When my happy, full-of-life, adventure-seeking 11-year-old son experienced severe, debilitating neuropsychiatric symptoms after stopping his asthma medication, I embarked on a journey in a desperate search for answers.
This journey has led me to one conclusion: there is a terrifying lack of awareness about the neuropsychiatric adverse events associated with the commonly prescribed asthma/allergy medication called montelukast sodium (Singulair) both during treatment but also after discontinuation.
After 9 months of significantly improved asthma symptoms, I stopped giving my son, Nicholas, montelukast because I discovered that the side effects included neuropsychiatric symptoms. I was hopeful this was the reason Nicholas had been experiencing mild bouts of unexplained sadness for the previous few weeks. Stop the medicine, stop his sadness. Easy enough, right? Little did I know, our worlds were about to be turned upside down.
Within days of discontinuation, Nicholas became so depressed he was no longer able to function: he could not eat, he could not sleep, he could barely go to school. He just cried for hours. Then the panic attacks started. For hours, Nicholas would get lost in his own world of screaming and thrashing with the only escape being sheer exhaustion and sleep. But sleep brought horrific nightmares. How such an innocent mind can create such terrifying dreams is beyond my comprehension and his descriptions will haunt me for the rest of my life. Even worse, Nicholas started to have hallucinations: both auditory and visual. I realized that I could not protect him from his own mind. I was powerless and it felt suffocating.
Terrified, we went to the emergency room for a psychological evaluation with the medication leaflet in hand showing the U.S. FDA-approved warning for all of the symptoms Nicholas was experiencing including anxiousness, depression, dream abnormalities, hallucinations, insomnia, irritability, and memory impairment. This warning also includes agitation, aggressive behavior or hostility, disorientation, dysphemia (stuttering) disturbance in attention, obsessive-compulsive symptoms, restlessness, somnambulism, suicidal thinking and behavior (including suicide), tic, and tremor.
After a thorough 7-hour evaluation, I expected the doctors to order diagnostic testing to determine a treatment plan that would reverse the effects of the medication. Distressingly, they did not think his symptoms were related to the medication. In fact, they explained that the medication would be cleared from the body within days of discontinuation and since Nicholas’ symptoms did not disappear upon discontinuation (negative dechallenge), they were confident the medication was not the culprit. Alternatively, they stated these horrific symptoms were induced by the stress of starting middle school and advised us to immediately initiate treatment with psychotropic medications.
Turns out we were not alone. Two organizations that have tirelessly been spreading awareness and advocating for drug labeling changes for montelukast for the past ten years, Parents United for Pharmaceutical Safety and Accountability and the Montelukast (Singulair) Side Effects Support and Discussion Group, connected me with over 6,800 members with eerily similar experiences with the neuropsychiatric side effects of montelukast.
Just like Nicholas, many report that their symptoms did not cease with drug cessation but rather emerged or intensified upon discontinuation from montelukast similar to “Post-Acute Withdrawal Syndrome”. Just like Nicholas, many report this terrifying experience lasted for weeks, months, or in some cases years. Just like Nicholas, many report symptoms may linger on an intermittent basis commonly described as a “rollercoaster of symptoms.”
Just like Nicholas, many report their doctors completely dismissed the possibility that protracted withdrawal symptoms could be induced by stopping an asthma/allergy medication. As a result, these children and adults have been admitted to psychiatric hospitals, initiated on psychotropic drugs, diagnosed with learning or development disorders, and terrorized by not knowing what happened to them and when or if they will recover. Story after story, just like Nicholas. But yet the medical community, at large, appears unaware of the risk for neuropsychiatric side effects, both during treatment as well as post-discontinuation.
It is alarming that even though the FDA added a warning for the neuropsychiatric side effects and sent correspondence directly to health professional organizations to alert them about the risk, the perception that this medication is safe remains strong and unwavering. The following doctor responses exemplify the general lack of understanding about the imputability, evolution, frequency, and severity of the neuropsychiatric side effects associated with montelukast both during treatment and post-discontinuation:
There is a video of Nicholas here – Change the Ending
The quest to change such deeply rooted perceptions is daunting. What will it take to see change?
Do we need to question the very foundation for the perceptions that this medication is safe:
Given the stakes, is this too much to ask?
This post focusses on montelukast – Singulair – but FDA warnings also apply to other drugs in the group such as zafirlukast – Accolate – pranlukast – Onon, as well as Zileuton – Zyflo.
Editorial Note: Laura Marotta got in touch after the last RxISK post on Montelukast. She had planned on writing for children but now writes to researchers, medical professionals, regulatory agencies, and parents to spread awareness about the neuropsychiatric adverse events associated with montelukast, both during and after treatment. Her hope is that Nicholas’ story will become part of someone else’s survival guide when faced with similar trauma. She encourages reporting all adverse drug events to the U.S. FDA.
The photo below is of Laura and her family. They live on Long Island.
i cannot express my gratitude for this blog taking on this drug,sometimes fighting for awareness is like banging your head against a wall.My son was prescribed this drug in 2004,after a respiratory scare that landed him in a pediatric ICU,as you can well imagine as a parent i was scared to death,and religiously made him take all his meds ,all the time.As time progressed his mental health deteriorated,we were direct to psychological care,more meds added,wellbutrin,celexa,lexapro,etc etc etc,nothing was working,we were still walking the line of mental illness.Now diagnosed with,school phobia,depression,anxiety,panic,as parents we were at a loss…..until one day when hearing from another mother,the puzzle piece fell in our lap,yes another mother,not one of the many many medical professionals we were seeing,and paying top dollar for,but another mother who had lived our nightmare to come out on the other side
Does the feelings ever go away
I am a 68 year old woman. I ran out of Montelukast. Within several days I begin to be so depressed, I could not stop crying. I couldn’t even have a conversation without crying. I went 8 days without this medication. Within 30 minutes after taking montelukast after no dose for 8 days, the crying stopped, and I felt so much better. I have had major surgery on both of my lungs, and I believe this medication gave me back my life, but I never expected a lung medication could have such harsh withdrawals. I have taken this medication approximately 30 years. Also, after three days of not taking the medicine my daily migraine headaches stopped. Once I returned to the montelukast, the daily migraine headaches began again. So I will be calling my physician to see how to handle this situation.
Any updates? I have just started this medication for 20 days and i am sensitive to anxiety issues and frankly all these stories are scaring me.
Listen I’m 27 years old and i took the meds last night for the first time in about a month and i feel like i have the flu my body hurts head hurts and my lungs 🫁 feel really bad
I took montelukast for about 4 years. It really helped my allergies and asthma. During that time I was also experiencing my OCD getting worse, and I needed more medication to help with that. I went to my PCP 2 months ago and told him I am always angry and I want off of my OCD meds due to other side effects. That’s when he told me about the side effects of the montelukast and that I might want to try discontinuing it as well. He felt it may have causeed the change in my mood and could have been what made the OCD worse. So here I am 2 months off both meds. I feel great other than my asthma feels worse than it did before taking montelukast. My mood swings have stopped, I do randomly cry and from what I read that might take time to go away. My OCD is better off of both meds, I am guessing this whole time the montelukast was making it worse. Has anyone ever developed a chronic cough after stopping this stuff? I feel like it made my asthma dependent on it and I really do not want to take it again. I went to my allergy and asthma doctor and everything is fine and under control. I just have this annoying cough that is causing me to wake up throughout the night and it gives me a headache from all the coughing.
I’m an ex coal miner been having breathlessness for 7 years + had 9 chest ex rays at least a dozen lung function test keep getting conflicting information for doctors, was taking it for 2 an a half years with minimal results no side effects that I’m aware of , I was told last week by a hospital doctor stop taking it they still can’t work out what the problem with my breathing problems are / asthma/ chronic bronchitis / pneumoconiosis / Emphysema,
Only had a couple of headaches in my 65 years , however stopped taking the drug montelukest 4 days Massive Headache
Have the headaches gone away?
Thank you for posting this. We have faced the same response from the U.K. medical profession concerning our daughter.
I am a 69 year old male from the UK and I’ve never been depressed in my life, a life I will add with many hardships. I began taking montelukast in September of last year. Over this period I have become anxious, feeling depressed and at times in despair, shaking, stuttering and problems with functioning in my normal way. I have developed complete mistrust of my partner and basically become nothing like myself. I have most of the symptoms relating to the side effects stated. I have other health issues and have been blaming them. However, I have been gradually getting more and more depressed, anxious, stuttering and my head just feels weird. I have stopped taking the medication as to me the correlation between my symptoms and the side effects of montelukast are just too similar to be ignored. I wouldn’t take this medicine again, even if someone had a gun to my head.
I wish everyone here well.
Can you let us know if things clear up after stopping. It can take some weeks to see any difference
I’m keeping a journal with daily entries. I’ll write weekly reports as to my wellbeing.
Really great to see that there is a person i the profession that takes this seriously ! I have offended several times since stating this medication and, have tried to take my life twice, plus, suffered from severe depression, to which the doctor put me on Sertraline, which, comes with it’s own problems.
It’s been a strange week since I stopped taking montelukast. There were times that my head felt like an echo chamber of my thoughts. There’s always some kind of headache that I’d describe more a feeling of my head being compressed. There are bad days and some better and sometimes it seems like some kind of really dark depression, that leaves after an hour or so and returns to the just feeling, weird and confused and paranoia. It’s quite difficult to explain because I’ve never felt like this before. I’m actually hoping that it is the montelukast and there’s a good chance of getting back to normal. Today doesn’t seem as bad, but then comes trusting it will become even better or its really long term with moments of peace. My best to everyone here.
Curious to see how this goes. My fiancé stopped taking it a little over a month ago. He’s a whole different person after having taken singulair. I’m hoping and praying his symptoms stop. He’s feeling extreme emptiness and apathy
I can only hope this is the beginning of the medical community recognizing the withdrawal effects of this drug and the possible long-term effects of this drug. Unfortunately the medical community seems to be completely uninformed about how common the side effects are and how many months or years it can take to recover. Doctors simply must stop telling people that the drug will be out of your system in a few days and you should feel better then. Both of my children took this drug for three years, and they have both now spent five years in recovery, both still having symptoms on the side effect list. Parents like myself can rarely find help from a doctor, as many doctors simply believe that once the drug “leaves the system,” all side effects go away. This simply isn’t the case. We desperately need more warnings on this drug, and families need help with how to recover from this drug. We simply do not know what this drug has done to our children.
So…what do you do? My daughter has psychiatric problems to begin with and was given singular about 3 years ago. It helps her congestion I THINK….however she did have pneumonia 1 1/2 years ago…she has asthma.
SO again… 🙂 Stopping can do all these bad things…I’m afraid to ask the doc for a change of meds. She has enough mental issues already. So…stay on it?
This sounds like benzo withdrawal…can be protracted (goes on forever). Google ASHTON MANUAL A doctor in the UK had a clinic to help people get off of benzos. It can take months or more. Some can never come off. So it sounds like singular has a protracted withdrawal issue. Horrible. Now what to do?
I was wondering the same thing… in fact after i saw the black box warning for this medicine and all the symptoms my son displays that match it 100%… my first thought was take him off ans stop it immedietly..
Now after reading this im wondering if i made the right choice… you would think stop the med stop the symptoms but if the symptoms are going to.continue anyway is stopping the medication a bad idea? I dont even know who to go to about this because his dr would say oh no he needs to stay on it the benefits outweigh the risks lets just put him on somethin else… again
I am in the same boat. I just found these things out and am now terrified since I flushed them all down the toilet. I’m so angry for thinking she’s just being a brat or blaming it on her watching things on her tablet. Please God wrap your arms around our children ❤️
What symptoms do they still experience.
IAM a 30 yr old mom.. taking montelukast sodium from past 2 to 3 yrs.. as I stop this medicine i first face breathing issues and also itching through out my body and irritability and hence I have given in to this time and again.. what do u think it can cause in adults?? Is there any same psychological issues with them too on withdrawal??
Our son is 36 years old. As far as we know, he started taking montelukast sodium in November 2020. He made comments occasionally, like: Why am I so paranoid? My dopamine level is low. Do you know ways to naturally increase dopamine? He started hearing voices and hallucinating, thinking people in helicopters were after him, and people were spying on him, etc. He started relating the way he felt and the way he was acting to the montelukast sodium so he quit taking it, He then started hearing voices and thought he was telepathic. All of this happened quickly and in a short period of time. Before we knew it, he was in jail with a minor infraction. He was let out, and rearrested within a week. Only this time with more serious charges. His evaluators are diagnosing him with schizophrenia and yet he’s 36 and never had any psychological disorders. We know he’s not schizophrenic. Yes, montelukast sodium has side affects in adults and even after ceasing the medication for some people.
Thank you for bringing awareness! It took several doctors before one acknowledged that Montelukast could be the cause of several negative side effects. One example, heart palpitations – they went completely away after discontinuation. However, the nightmare was not over. A new set of withdrawal symptoms began. Debilitating migraines, night terrors, dilated pupils (for weeks – not moments). We need answers on how to help someone recover after the side effects of this medication.
I am a 57-year-old woman who has had sinus problems my entire life. My sinuses never fully developed as a child and I thought maybe that I might have allergies so my doctor put me on Montelusk( Singular) And you’ll never believe what happened it helped all day for a while so then I really thought I had allergies and then after a while it only worked part of the day and I could never tell when I had a sinus problem, By the time I noticed what was going on the pandemic was in full force and my daughter wouldn’t even see me when my sinuses started really acting up no cough no fever no chills no loss of appetite none of the other signs that I might be infected with the pandemic but I can’t even get a doctors appointment until I go and get tested and as I’m trying to fill out the Things online to go get tested oh and by the way I have cataracts on both eyes. It makes it very hard to read things fast and then it said at no charge he could be tested so I didn’t know I needed my insurance information out at the time well here I am still not able to fill out the information because it stops and clears everything before I get finished and I can’t get my sinuses checked until I get a test done is that not sick or what I’ve never heard of a Dr. not treating you unless you miss treated them Or someone on their staff is that normal or what? I guess it’s another story like how you like them apples. You know the case of never trying the Apple but asking how the heck do you like them???? Really upset right now and don’t know what to do do you have any suggestions if so post them and I will read them thanks for listening. I will just sign off as T? Help me if you can and I will do the same for you if I can should I stop taking the Singulair now to see how I feel because I do have restless nights where I wake up every hour and I have terrible terrible nightmares but they didn’t start until my mother passed away so I don’t know at this point what to do can you help please?
It should say Covid test done or my doctor will not see me and her which part it has something about a cavity.
I just stopped cold turkey about a month ago with Montelukast and now have daily headaches. I took it for 5 years to help with my congestion and vertigo. I am hoping it will go away soon – any ideas for how long to remove from the system?
I am currently going through withdrawals with daily headaches. Do the headaches go away?
Hi how are you doing now? Were you able to withdraw the montelukast?
Thank you for this compelling and important post. I have no professional knowledge or experience of this drug.
I do have experience of the misdiagnosis of adverse drug reactions.
When I watch and rewatch the suffering captured in “Actual Footage of Nick”,
I find myself asking is this intense AKATHISIA???
I don’t know for sure, but it would seem a possibly relevant differential diagnosis.
Apparently, most families devastated by this life-threatening neurotoxicity have not heard of akathisia before their loved one is misdiagnosed as having a psychiatric condition.
Neither have many of their prescribing physicians, it would seem.
Although a physician myself, I had not heard this word until after acute, then prolonged, intense akathisia suddenly developed in our loved-one: – induced by SSRIs, ill-advisedly prescribed for normal exam stress.
Serial psychiatric misdiagnosis and inappropriate psychiatric incarceration then followed, entirely due to apparent ignorance of this devastating prescription drug induced condition.
Labels for life, resulting in destruction of quality of life.
The enforced, multiple, extended psychiatric drugging was to cause life changing injuries, exacerbated by the loss of all life’s vital opportunities in education, employment, relationships, hopes for marriage and childbearing.
Loss of a bright and promising future, societal rejection, social isolation and exile from society to protect against further psychiatric misdiagnosis and injury.
My medical training, and lifetime learning, did not prepare me for the accumulating legacy syndromes damaging different physiological systems months and years after cessation of all unnecessary psychotropic drugs.
It is comforting to see that Nick is an advocate for increased ADR awareness with his family.
“Serial psychiatric misdiagnosis and inappropriate psychiatric incarceration then followed, entirely due to apparent ignorance of this devastating prescription drug induced condition.
Labels for life, resulting in destruction of quality of life.”
To be fair, all psychiatric treatment are really just a result of ignoring an underlying cause. They misdiagnos everything in that regard.
Sad that this happened to you.
So being a doctor can you say how to find out if singular has protracted withdrawal? Is that the same as with benzos?
My daughter takes this…has mental issues already, has asthma, and the drug helps symptoms of that but mental effects can’t be determined…not really. She forgets so comparing before singular to now on it, she cannot.
If on singular, it is a concern…to continue and chance psychiatric problems to worsen or stop and chance the withdrawal? Not asking you that…but it is our question. I wish we had more statistics on this..how many stop it and do/do not have withdrawal? that would be a good question! for who though?
I wanted to clarify something in my last post. Our son started hearing voices before he stopped using MLS but it seemed to get worse after stopping.
My 15 year old daughter , I believe, has suffered neuropsychiatric side effects from Montelukast. She was prescribed it for an allergy to cats, since she begged me not to re-home our two elderly cats. It worked great for allergy symptoms, but during the course of the next two months, she began to complain of fatigue and generalized low mood. I took her to her PCP and he diagnosed her with depression and prescribed an anti depressant. It did absolutely nothing for her, so two months later, he increased the dose. Still, no change. She began to struggle in school, and then started having panic attacks. She begged me to home school. I said I thought it was better for her to be in school since I work and can’t be home with her. I started her with a therapist weekly. This did not seem to help either. She came to me and told me she was starting to have suicidal thoughts. We both agreed that maybe she should receive in-patient treatment at a psychiatric facility. She was afraid because she didn’t know why she was thinking and feeling this way. She went through intensive individual and group therapy and was put on new medications. Still, nothing helped. She was hospitalized again one month after her release. It was then that someone from an online community asked me if my daughter was on any other medications besides psychotropics. I replied “Singulair.” I was directed to some resources and did a lot of research on my own, and I was astonished at the number of children who have had the same issues as my daughter who also had been taking Montelukast. I immediately took her off it, and she has been better than she’s been in a long time. It’s been two months since she took her last dose. She is still on anti depressants and a mood stabilizer, and still going through therapy to help her deal with the anxiety. I am hoping her depression and anxiety will be reversible after she has been off the drug for awhile. Her doctor never once mentioned that her depression could be a side effect of this drug that she just started taking.
Hello- read your experience with the drug montelukast. I want to get off the drug also. Did you have an alternative med. to take you took your family member off of it? Should I ween off of it? I was concerned about getting an asthma attack doing it cold turkey and what would I take then? I’m hoping I can just get by on using my rescue inhaler. I have tried a steroid, but didn’t like the side effects. I’m so sorry about what your family has experienced. In reading all the blogs many were taken off of it immediatly but U didn’t read anything about what they used in place of it. Thank you for reading this and I would really appreciate it if you could give me some information.
We would not have known that my grandson’s OCD was caused by Montelukast without the Facebook group Montelukast side effects and discussion group. The prescribing doctor had no idea about the side effects and was totally dismissive.
montelukast should be a last resort for allergies/asthma. it helped my son for some time, then he slowly started to change into a ticking, depressed, angry and hyperactive version of himself. we did not link it to the medication until it was too late. several doctors told us to stop immediately and he worsened for 7 weeks after. After he stopped taking it, he tried to get out of a moving vehicle and attacked his sister with rage. Doctor after doctor dismissed us when we brought up the medicine. he now is left with a chronic illness (autoimmune disease and encephalitis) although mug improved is just not the same person he once was. integrative medicine seems to be helping him heal but it has been almost 2 years of trying to recover from this pharmaceutical induced brain injury. Thank you for publishing this article and helping to spread awareness.
This article is great and vital on spreading the awareness of what horrible, neuropsychiatric side effects that can be caused by Montelukast. The medication side effects have been devastating to our son and family. When we decided to stop the medication, we were told we should see positive changes right away and his behavior would improve. Instead, exactly the opposite happened. The same symptoms my son was having while taking Montelukast, actually intensified when we stopped it. The doctors denied that this was caused by Montelukast since they thought the medication was out of his system. It was so obvious that it was all related because it was the exact same symptoms, but so much worse. All of this was scary and horribly devastating and there was nowhere to turn to for help. It is literally one of the worst feelings a parent could have. Thankfully, I found other stories and this confirmed our instincts. However, it has been a long road because not only are you desperately trying to help your child and bring them back, but you are fighting a system that doesn’t believe that the symptoms are caused by the medication. The FDA must do something about this. Children’s mental health is being affected by Montelukast and many people have no idea that it’s from the medication. It’s scary to think of how many other children are being affected and the parents and doctors aren’t connecting it. If we can change this from happening to other children, we must do that. These side effects are debilitating and no child should have to experience them.
My son (who was five years old at the time) had a suicide attempt during Singulair (Montelukast) withdrawal. It was a devastating time for our family. We have two Montelukast affected children how ever one was far more effected than the other. We stopped the medication in our most affected son cold turkey (abruptly) which resulted in the suicide attempt and long term side effects. With our other son we asked our Dr to support us in tapering him off. As a result he bounced back more quickly, had a mild withdrawal in comparison and has fewer long term side effects. It may have been a coincidence as he was on Singulair for 6 months less than our other son.
It is vital that Government’s across the globe investigate the intense withdrawal period and long term side effects experienced by so many of the members of the Montelukast (Singulair) Side Effects Support and Discussion Group. Having talked with thousands of Montelukast affected families, I’m confident that this medication requires a black box warning and increased education of the medical community.
I got an email today that there IS a black box warning NOW…but what about those on it afraid to stop because of withdrawal? We need statistics…how many titrate slowly and have an easier time…etc etc
Wow. How do we get that info?
I would like to know the same thing. I was prescribed it age 10 for allergic rhinitis and am now 23, and have experienced anxiety for many years. I would like to come off it asap it possible but am not sure the safest way to do so.
Hi Vanessa. I am seeking advice on how to wean myself off Montelukast and I’m just wondering how did you wean your son off this awful medication?
My son was on this drug for 7 days. 7 terrifying days. First, the bed wetting. Then the baby voice and isolation. He became hypersensitive to things that made him upset. By day 4 he would climb in my lap and not want to look at anyone, just snuggle as if he was so sad. On day 6, he cried over his tight socks and the difficulty getting his right socks on, just right, made him want to kill himself. He told us, through tears that the trouble with the socks, made him want to kill himself. We were terrified. All of the other symptoms were now connected. I stayed up crying and researching. When I stumbled upon the support group, I learned of the struggle to get the black box warning. I also learned of the 2014 Pediatric Advisory Committee Meeting and its horrors. We stopped immediately. He is still sensitive to emotional situations and gets weird tingling in his limbs sometimes but he is much better. Those 7 days, I will forever regret.
Thank you for sharing your story. If you don’t mind me asking, is your son better now since he was only on the medication for seven days? I am asking because the same thing has happened to my daughter, and she was also on it for roughly seven days. She has stopped the medication for about a week and a half but still complaining of the same symptoms. Thank you in advance.
Like many others, our GP didn’t connect my son’s mental health & behaviour issues with his taking Montelukast. He was referred to CAMHS who also made no connection, in fact couldn’t understand why he wasn’t improving with their help. I found out by accident after him taking it for over 2 years. The GP’s response to us was ‘and Montelukast caused all that?’ as though he didn’t really believe us. Although he’s 3 years off, he still suffers severe anxiety which has had a very negative effect on his teenage years so far. It’s so encouraging to read this article, hoping for more awareness of side effects. If we’d been warned, my son could have stopped taking it much earlier or not taken it in the first place.
My 7 year old threatened to kill him self daily while on this drug. It was horrifying. He had no control of his anger or emotions. Once off, he slowly returned to normal and at 9 very rarely has outbursts of this nature.
This drug gave me vivid nightmares….and I literally never dream. And horrible mood swings.
My son started threatening to kill himself in Descriptive ways starting at age 6. He attempted too many times to count. He was hearing voices, throwing classroom furniture and begging to stay home and hide in his room. He started on this drug to Combat his asthma at age two and symptoms started right away. We thought though he was going through terrible twos. It wasn’t until at age three he had serious outbursts and was diagnosed adhd. Meds for that didn’t help. They labeled him a troubled child and stated parental issues were causing this. Then they stated the death of his Grandfather triggered his outbursts. I have two older children who exhibit no issues, were patented the same way and are not and have never been on Singulair. They have had no problems with anything like this. My son spent three months In a live in mental hospital at age 6-7, where I was told they would remove all drugs and start over for assistance. When asked about singulair due to his asthma, I was told it was a dangerous drug for him. We had so much going With him to keep him from self harm, I failed to question why until I found the support group regarding this drug and found the other families with same stories. He is now 13 still dealing with the effects of his choices while in the drug and loss of his entire childhood. He feels guilty for all that he did and suffers depression and anger towards the drug and those who put him on it. He no longer is suicidal and he is trying to return to normal life. He will never attend a typical school as the anxiety he is left with is too great. This drug is forever stealing childhood and futures from too many children. It needs to stop.
people….so I guess you can not stop this drug?
I’m sorry you’ve gone through this horrible time. God be with us!
Sadly, my child also suffered severe neuropsychiatric side effects from Singulair. We were never told this was a possibility and it took me 8 months and almost losing my son to figure it out. There are much safer AND more effective therapies on the market. This drug should be the last resort for treatment and the U.S. FDA needs to hold the pharmaceutical company accountable to make the appropriate label changes and add a black box warning to protect others. Too many have been lost or irreparably harmed by this medication that not only treats the lungs, but gets into the brain. Thank you for bringing awareness to the terrible and life destroying side effects of this drug.
I have suffered from so many symptoms of this awful drug. I’m thankful mine have not lasted as long as some, but it’s terrible.
How long did it take you to get over it in 27 years old now been taking it about 4 months or so it’s got me feeling like I’m dieing headaches palpatations sick at my stomach tingling tremor I just feel horable. Help please any kind of info let me know thanks.
That’s how I feel rn. I’ve only been off montelukast for 5 days or so. I couldn’t figure out what was wrong. I haven’t missed any of my other medicines: citalopram, bupropion, birth control and lisinopril.
I figured out it is the montelukast that I haven’t taken in a couple days. Can’t believe a allergy medicine the doctor prescribed me for recurring sinus infections. I ended up going vegan and have been sinus infection free for over a year.
I decided to stop montelukast but I’m not feeling so hot: nausea, stomach feels different, bm looser, headache, congested, nasal drip, tired, feel kind of sad.
This is not cool at all. I just don’t know if I should continue without it or take it again?
I want to take one to end the feelings I’m having but not sure if I should go back on it and have to feel like that again. Any tips?
Thank you for bringing awareness to this drug and the side effects. My son was 2 when he was prescribed this drug for his asthma. He was a very happy and fun boy. He slowly started to become depressed and would ask about dying and how could he die. It was heart breaking. Even more heartbreaking is that a connection was never made to this drug. Then came the night terrors, sleepless night, leg aches, stomachaches, and aggressive behavior. He would routinely hit himself in the face and scream. He would shout and kick out of the blue. He cried all the time. We had recently moved and we attributed it all to the move. It was not until 4 years later and his teacher saw he was on this drug and had notice some of his behavior was similar to what her son had experienced on this drug. I consulted his doctor and was told his issues were not from this drug but if I wanted to take him off, I could. I weened him off slowly. That was 2 years ago and my son still has some issues from time to time. But, he is back to being a happy, fun loving boy. I will never forgive myself for not reading up on this drug before giving it to my child. I was told it would help my child with his asthma and help him breath and that was all I cared about at the time. Something needs to be done to help parents make a more informed decision about putting this drug in their child.
When you say you tapered slowly.. how slowly? Over a few days or weeks and how much? I have an almost 4 year old that has been on this for the last 2 years. He was sick with a tummy virus and was off for 5 days. I noticed him having “tics” – blinking his eyes a lot while playing and his head would jerk to the side.. almost like he needed to refocus his eyes. After I started the med back, the head jerks stopped but he still complains at times his eyes bother him and he can’t make them stop, and he will cry. This is very little it happens but My heart breaks to watch this. His doctor said he’s never seen singular cause the issue but he does consider this “tics” and he will grow out of it but to watch and if worsens will re-evaluate but to continue the singular.( He was on singular bc he would get so sick from allergies he would end up with chest congestion and pneumonia. ) I just want him off the med. He also as a 1 year old could not tolerate Budesonide and Zyrtec due to psychosis behaviors. He would bang his head on his crib. i just want to take him off without causing permanent issues. Any help is appreciated!
My daughter has been having tics and random breakdowns from little situations. First, it was a hard blink, then a throat clearing, now like a blink & eyeroll up. This is the only medication she’s on so I dug deeper into it, and found all of these reactions! I hope she recovers. I feel horrible and heartbroken.
Hi Ronda, I am so sorry to hear about what you went through with your son but it makes me happy that you say he’s back to being happy and loving and gives me hope for my son. He’s a very loving and sweet boy, currently under this horrible medication but I’ve been noticing mild depression symptoms and recently found out about all these side effects and I want for him to completely stop taking it but don’t want to do it abruptly. How did you wean off your son? You mention slowly, how slowly? Please help me, I am so so scared of what can happen to my son
Our 20 month old son was on Montelukast for 4 months before experiencing intensified crying episodes, horrible nightmares, extreme anxiety at bedtime and overall distress. It was heartbreaking. I had remembered seeing the potential side effects before giving him the med and my search led me to the Facebook support group which was so helpful. One of the pediatricians in our practice agreed it could be the medicine- but his primary doctor never really agreed. We saw improvements within a few months but he continues to be sensitive to certain corticosteroids and anything with a lot of artificial coloring. It is so terrifying that these side effects are even a possibility for something so commonly prescribed to such young children. I know it is rare to experience side effects and the drug can help some- but I wish I had known more about the potential before giving it to my son because I would have chosen not to give it to him. Those nights holding him while he was terrified and couldn’t stop screaming will haunt me forever!
My daughter suffered severe side effects and nurosphyciatric side effects they came on gradually over 12 months. We saw the changes in our little girl who is only 4 and didn’t realize that it was the montelukas and the doctor dismissed what was happening, if it wasnt for a friend posting about her own son and his side effects I would have been none the wiser. Since stopping montelukas she suffered relapses of the side effects and because I am now aware I have been able to help her through it. it has taken 5 weeks and she seems to be back to her normal happy vibrant self.
I was never sick, didn’t have depression.
In spring I got a sinus infection and everything changed, by October 2010 my family was planning what to do if I died, Rotor rutter surgery was done on my sinuses. I was hospitalized over Christmas holidays, and given a nurse by my insurance company, she suggested that I have allergy testing. Spring 2011, I started allergy shots, singulair and remained on advair that started while in hospital.
Asthma was still not under control with multiple hospital visits each year, advair was changed to simbacort, and I remained on singular and weekly allergy shots.
In August 2013, I received my Xolair injection, this was a game changer for the asthma.
I remained on xolair, sibacort, allergy shots and singulair.
Then singulair went generic, and I changed.
I couldn’t focus on my job, carrying out any simple task was almost impossible, I became combative and argumentative about everything. My friends were keeping away from me, my family avoided me as much as possible.
I started to think about driving my car off of bridges, cliffs or into walls, in front of trucks or trains, and I had to cross a bridge 2 times a day, train tracks 2 times a day.
Just out of nowhere, what would happen if I drove off the bridge.
I ran into issues with my insurance company, prescriptions running out and not being able to stay on task enough to get it all together to refill my medications, so decided to kill myself and be done with it. Made a plan, set a date, and started to get ready. I had an appointment with my pulmonologist that I would be charged for if I missed it, he questioned me about my meds, and I told him I wasn’t going to take anything anymore, no reason to. That I was working on my plan to die. He contacted my general practitioner and they put me on antidepressants, they didn’t work. During the 30 days of the antidepressants, my friend, a chemist did some research on all my meds, side effects and had a talk with me about the suicidal symptoms of singulair.
Over 2 years now, and not often, but it still happens, I have a flash of thought that I should drive on the train tracks. Now I know that I really don’t want to die, and that is just the drug damage talking, but I go the long way around town in order to avoid those trains now.
I’m so sorry you went through this. Once I took flagyl and forgot….I took a small drink of liquor. THE NEXT DAY I was in the same place you were on singular.
How can one talk to a chemist? PERHAPS they can say how to get off this safely.
This drug has such intense ongoing effects that doctors do not acknowledge. These effects last years not a few days as they advise. The pieces clicked into place after I found a support group for others suffering from the damaging effects of Montelukast. More research into the neuropsychiatric side effects, better warning labels and better physician education would be great. This drug should not be prescribed to children.
Severe sleep and behavior disorders in a toddler. 4 months after stopping, issues still not resolved. A toddler with insomnia is a horrible thing. ☹️
Our experience was very much like Nicholas’. We had no idea what prompted the night and day change in our previously happy, smart, energetic ten year old son. We didn’t recognize the withdrawn, anxious and severely depressed child who could barely leave the couch. He could not attend school and was paranoid, suffering insomnia, loss of appetite and lost all interest in his hobbies and activities. If not for Laura sharing Nicholas’ story and the happenstance of seeing it, I am not sure if Ben would be with us today. Thankfully this drug only stole a year of our lives, for so many others it has been far worse.
My daughter went from being a great sleeper, beautiful and kind to a sleep deprived monster being on this drug. It was mood altering for her and she was only on it for a few weeks when she was 2.5 yrs old. She went from a beautiful kind little girl to angry and nasty which hasn’t changed back even tho she hasn’t had any of this drug for 5yrs now :'(
My son was on this drug for 4 months during a bad winter & while amazing for his allergies & asthma it was not so great for his mental health my happy boy turned into a very sad & angry boy!
My daughter was given this drug May 2018 for asthma and hay fever.She was really suffering at the time and I was so pleased to be given something that could help.
Little things crept in slowly but I just put it down to being a teenager at first she started not to sleep,became very anxious,shaking and agitated.
I didn’t make the connection until the January of the following year .
I was horrified that no body had told me and these side affects even though I mentioned her not sleeping at her asthma reviews.
I removed her from the drug straight away and are still suffering side affects now.
Her legs shake ,she can’t sit still ,has found going to school almost impossible,depressed withdrawn and at times suicidal.
I found a group with other mums suffering with the same things it was as though they were writing about our lives .
Heart broken is how I’m feeling and how on earth can this be aloud to be given without warning to our children .
The storm that is Singular completely blindsided myself and my family. My young daughter was prescribed this at 2yrs of age and spent 4 long years taking this medication daily. OCD, anxiety, night terrors, bed wetting, seperation anxiety, extreme fight or flight, rage and aggression took over her life.
As a mother with a newborn and a toddler suffering these horrendous side affects I was on struggle street. Isolated by her behaviour. I was well and truely at my wits ends as to how i was going to survive parenting this child who was so difficult. My love for her, and my fight for her to ‘get better’ lead me down many paths, diet, discipline, routine changes, therapy and almost more medication. Singular was never on my agenda (insert mothers guilt here).
If it were not for the ‘Montelukast (singular it) side effects support & discussion’ Facebook page and their tireless efforts at raising awareness I would never have heard about the side affects of this drug. A news article on my Facebook feed connecting this drug to side affects was the ‘penny drop moment’ I had been looking for! 12 months on and my little girl is coming forward in leaps and bounds. we still have our days, but the light at the end of the tunnel is bright.
Awareness is key.
My son was prescribed Montelukast in 2015 aged just 2, instead of an inhaled steroid. I didn’t know there were already concerns about it or I’d never have let him take it. He had night terrors, huge rages, and before we took him off it age 4 he’d started saying he hated himself and wanted to “not exist”. He’s been off it now for nearly 2 years but I think it fundamentally affected his brain at a sensitive time.
My 3 year old daughter was put onto this drug after her hospital admissions failed to reduce and she was being prescribed prednisone too often. I started to notice my normally joyful daughter becoming more and more aggressive, violent, going into emotional tantrums that i couldn’t get her out of, whereas I could before. Her behaviour became very heightened and almost anxious.
I reported this to my respiratory consultant and asthma nurse who shrugged it off as “just her age”. I knew this wasn’t my daughter. I just knew it was more than that. I took the decision to remove this medication from her and within 2 weeks I started to see my lovely little girl again.
More needs to be done to ACKNOWLEDGE that this may not work for everyone and to warn parents clearly about what side effects to look out for. And certainly not to make us feel like we’re delusional.
This drug has stolen several years of my daughters life and continues to do so, even after being off it 9 months.
More needs to be done to highlight its negative side effects, more awareness within the medical profession and lastly, the right support to build someone back up again.
It’s the same story over and over again – people who can contribute so much to the ‘evidence’ around conditions are fobbed off, humiliated, lied to and so on. The MHRA certainly has it’s share of ‘pinochio’s’.
Another example to what everyone is saying here about the response when reporting symptoms is the scandal of the MHRA sitting on evidence that breast implants cause illnesses, including cancers. Again another exposure by ‘Dispatches’ involving MHRA This time ‘Britain’s Breast Implant Scandal’ Channel 4 June 24 2019.
Access to all C4 programme videos(have just found out) is usually via Annie’s links, but also can be accessed via registering with – All4. eg google All4 Dispatches first,.
John Richardson as the person responsible for devices was put up as spokesperson who defended MHRA’s lack of warning on UK information provided for women when in America there is already a warning by the regulator under Risks and Complications re Breast Implant Illness. He was implicated in the Vaginal Mesh scandal and is resigning in October.
Ian Hudson the CEO is also resigning in October .
My sweet son, who we called smiley because he was so happy and always smiling, suffered an adverse effect from Singulair. But adverse effect makes it sound like it was a one time thing and then life moved on, that’s not the truth of the matter. Singulair isn’t just a one day one or week withdrawal, it is months and years of your loved one suffering from the effects of this toxic drug. Paralyzing anxiety, depression, self harm, suicidal thoughts. My son feared I was dead every time I had to get in the car and leave him, he would call me crying, his big brothers would find him curled in a ball sobbing. The once outgoing kid, 3 yrs later, still has to see a counselor, still has anxiety episodes, and still skin picks. This is just a small window of our struggle to overcome the effects of singulair on my son. I regret, deeply with all of my heart, ever giving this to my son for chronic sinus infections. I would never push my son in front of a bus to fix a broken leg and yet, giving my son this drug for sinus infections, has completely runover who he is at his core. It has changed him. I pray every day that he will one day be the young man he should have been, and not the one overcoming the horror that is singulair.
My 2 year old son went on Montelukast for his asthma in 2012. He had some adverse effects but we didn’t recognise them at the time as we thought it could be his age. He started to not sleep well having been a brilliant sleeper upto that point, he had night terrors and became obsessive about things. More concerning was his sudden irrational fears, he wouldn’t like the change of coloured tiles on the floor and no longer enjoyed the pool he’d been swimming in weekly for the past 2 years as he feared the filters. He came off Montelukast due to his asthma improving.
Aged 7 years we put him back onto Montelukast, due to asthma problems. We slowly saw a decline in his mental health to such an extent that we sought help from our local GP. He was suffering from extreme anxiety, would no longer sleep in his room or be in any room by himself, we even needed to be with him as he sat on the Loo! He suffered insomnia so despite now having to share our bed he still wouldn’t sleep for most of the night. He was scared to tell us that he was hearing voices and suffering from hallucinations as well as having to do things in balance (OCD). This is what prompted us to seek medical help.
We had a long wait for appointments and we are still waiting for some. Thankfully at our annual allergy appointment I asked for advice about our sons psychological problems in a desperate hope to get some answers. He couldn’t help but the Professor at the Evelina hospital London asked us about his asthma and we explained that it was doing well as he was still on Montelukast to which he explained that he no longer prescribed that drug due to the side effects similar to what my son was suffering. We took him off the drug straight away having been on it this time for 10 months.
It was such an eye opener for us as we now understood the reasons for his behaviour change at 2yrs and these all occurred within a week or 2 of starting Montelukast.
It is 7 months post Montelukast and we are so pleased to have our son coming back. We still can’t believe the difference, only yesterday we smiled as we heard our son go upstairs to read in his own room all by himself or close the bathroom door behind him. He is sleeping much better too and concentration levels are improving.
He till has some anxieties that we deal with but now we are concentrating on him catching up with his peers at school because this has been a tough year for him and his attendance at school has been poor despite winning awards for 100% attendance awards previously.
We are desperate for more awareness to the effects people suffer from this drug in the hope that no one will have to suffer like so many others have.
The posts about this drug are so supportive. The NHS however is not with regards to helping with side effects and actually even explaining what I could be feeling.
My story started in January when I had a month long flare of “allergies” still undiagnosed. I was prescribed this at the end of January after already being on a lot of antihistamines and steroids, none of kept my allergies at bay. This was the only drug that worked! However.. this is when I started to get a lot of other symptoms.
In the coming months I experienced nightmares, muscle spasms and excessive sweating then the mental health issues came. I have a multitude of other conditions and have had these since birth. I have always been positive and upbeat. Now I experience bad thoughts, depression, anxiety and PTSD. I understand what I went through was traumatic but my state of mental health did not match my usual way of dealing with things. I have EDS and have had some pretty bad experiences of dislocations and other things. I had my tonsils out when I was 20 and was woken up drowning in my own blood. None of my other more traumatic life experiences have made me feel mentally unstable. Introduce this drug and my mind feels broken! I understand that I cannot stop taking these due to my anaphalaxis episodes and allergies HOWEVER I do feel that more information for patients and drug support should be given. If someone knows this is coming, they can be prepared and understand why they are feeling this way.
Although I have been on Singulair on and off for at least 40 years, cromolyn sodium has been my go-to drug for allergies for decades, both as a nasal spray (Nasal Crom) and as an inhaler (Intal). The latter was withdrawn from the market with the “reasoning” that it had a propellant that was destroying the ozone safety net above the earth. Have since found out that (Merck?) bought it from Pfizer. I believe there was an implication that (Merck?) was more interested in selling corticosteroids. I am opposed to corticosteroids since they suppress immunity. Nasal Crom is still on the market, thank goodness.
Now that I have read about the neuropsychiatric effects of Singulair, it gives me a clue to my really blue periods. Despite this being my spring allergy season, I am backing off, using the pattern of taking each successive dose at longer and longer intervals (April 1, April 3, April 6, April 10, April 15, April 21, April 28, May 6, May 16, which I believe will be my last day). Thank goodness Covid-19 makes it acceptable to wear masks!! I have heard that there is a company that still produces cromolyn sodium fluid that can be used in (sold separately) inhalers. Hope that is still true. I had found the company’s website, but lost it again.
As a dear friend of mine says, “Love and light to all!”
Myra, You give me a glimmer of hope with your reply. I too have been taking Montelukast for many years, suffering with severe allergies. It’s just been within the last year, 2020 and Covid-19 that my severe effects have cropped up. I have weaned myself off the corticosteroid, QVAR; and down to 12 pills of Lexapro, now taking every 6 days in Dec, every 7 days in Jan, until gone.
Stumbling on this website, I find that the culprit all along could be the Montelukast Sodium. My coughing is so severe, I sometimes wretch and throw up anything on my stomach. The Restless Leg Syndrome (take pramipexole for this), excessive irritability, inability to concentrate on anything! is driving me over the edge!
I will research the Nasal Crom and cromolyn sodium fluid to see if they are a viable solution to my dilemma. Thank you SO much. Blessings!
It as been about 10 years now since my son recovered from the debilitating side effects from Singular. He started this medication when he was around 9 years old, at 10 he was given an adult dose (I was unaware the increased dose was more than a child should have been prescribed). That’s when he started hallucinating, being afraid to leave my side, believing we (his parents) were poisoning him, feeling generally terrified about everything, OCD, and suffering from night terrors. At times the symptoms would seem to come and go. He took this medication on and off on an as needed basis, so in retrospect I guess I should have figured out the cause a lot earlier, however when he was prescribed the medication I grilled his pediatrician on possible side effects and the overall safety of the drug. I was assured there were NO side effects and that this drug was very safe. It was not. It forever changed not only our son but our entire family. His anxiety got so bad that by 8th grade he couldn’t attend school without me being there with him. I think he was around that age when he made the connection, there was a new warning on the label of the medication bottle stating something about psychological effects… that started my research which led me to a courageous group of woman who helped school me on what was happening. None of the doctors we went to for help said his symptoms could be from this drug.. Once he stopped it took about 1 1/2 years to really see and believe he could recover. At 24 he still suffers from anxiety, although it isn’t debilitating it is still there. Almost every day I read about a new case of this drug harming another family and it breaks my heart.
Thankyou for sharing Barbara, my son still hasn’t exited the tunnel & your story gives me hope. I doubt my son will ever be free of the anxiety this drug caused, he was put on 10mg at age 11 because he was big for his age, but will hold on to the fact that there’s life ahead, even with the anxiety.
My son was 6 at the time when he had a persistent cough that I could not get rid of. His doctor prescribed Singulair because she said it has helped with her allergy kids. He was on it for 30 days and the cough went away but right at the end he started telling me he didn’t want to be alive anymore and that we didn’t love him. He was crying and throwing screaming tantrums which he had never done. I contacted the school to see if something was going on. Nothing! Then my friend, Mari, shared a video of a kid screaming on FB and he was on Singulair. I started researching and found out about the black box warming that I was not told about. I also found a very supportive FB Montelukast group that I have been following since then. He has recovered back to his sweet self but it is an experience I will never forget!
I’m so scared. My son has virus induced asthma. My husband took him in to his pediatrician and mentioned his allergies/ coughing. She prescribed montelukast/ singular. It has been a little over 30 days and he has a cold, so I go to set up an appointment and look into his current meds and see this warning. I am petrified. I asked the doctor today why they would ever put him on this. She looked at me like I was crazy. Said we can stop. He has a fever, ear pain, nightmares, scared to sleep without me. He just turned six. I’m so worried we have caused irreversible damage. I’m scared for him to withdraw and I hate myself for not looking into it sooner. SHAME ON THESE DOCTORS AND PROVIDERS. NOBODY TOLD US A THING AT ALL. NOT THE PHARMACY OR PEDIATRICIAN. I AM SO ANGRY. I hope my son is spared as he has only taken it for less than 35 days.
My seven year old son Dylan Was on Montelukast from the age of 3 for his asthma, which he was hospitalised for on many occasion over the years.
He grew very hyperactive and OCD but as the years went on he also grew
Couldn’t sit still/ shaking
It was only by chance we came across someone else’s sons story in an article five weeks ago, that we actually made the connection.
We took him off the drug immediately and the first week the change was huge.
The nightmares and hallucinations that had taken over his life had completely stopped and the anger disappeared but then this past week the Ocd and hyperactive behaviour has all come back but much worse than before.
I do believe this is an affect of coming off the drug and definitely needs more awareness made.
Thankyou for sharing your story. This just breaks our hearts so many families are going through this.
Same with ours. All if these stores are literally my life since 2017. I want to cry at the thought of not knowing the damage sooner. We are living a nightmare. Not only did we live the side effects and stopped taking it once we found out, now we are dealing with long term effects popping up. OCD, anxiety, Tics and not sitting still. All stuff his doctor made me sound so crazy for. Said I shouldn’t listen to internet moms blah blah blah. I hope our children can heal from this
It was an article like this that saved my daughters life in January of 2019.
My daughter Kat was prescribed Montelukast in June of 2018 when she complained to our GP of worsening allergies and asthma. Singulair was a name that I knew and I didn’t even bother to research it. It’s been used for years and if our doctor said it was going to help, I trusted her.
By September of 2018 my bright, funny, kind daughter was suicidal. She managed to go to the first 14 days of school and then was not able to attend. We placed her into an intensive outpatient program to get her more help for her depression. Every obstacle she faced, we lovingly worked through. Therapy, medicines, relaxation techniques, music therapy, a cpap machine, coping techniques, nutritional supplements like zinc, vitamin D, and magnesium. We left no stone unturned for our child.
After a few days at the IOP, we moved her into an inpatient program. Over the next 4 months, our daughter spent 65 days in inpatient programs and another 47 in outpatient programs, in addition to her twice weekly therapy sessions with her regular psychologist.
We were at our wits end. How could she not be improving at least a little? We adored this child. We spent almost $200,000 on treatments for her. We followed all of the professional recommendations given. We had a peace-filled home. There was no trauma. She had friends who loved her. She had pets to care for. We took wonderful vacations.
Meanwhile, we continued to give her a Singulair pill each day.
In late January 2019, I ran across an article on my Facebook page about the neuropsychiatric side effects of Montelukast. My heart dropped. Had I been poisoning my child?
We called the GP and asked and also found a group online for people who have experienced the side effects of Montelukast. Our doctor called back three days later to say that it was “highly unlikely” that Singulair was the cause of my child’s depression or anxiety.
The online group was instrumental in helping me help my child. We began to wean her off of the drug and found a pulmonologist to treat her asthma. When new side effects popped up during the withdrawal period. According to the doctor, because the half life of the drug was something like 8 hours, she should have been feeling like her old self again the next day. Not even close.
It took 12 weeks to start seeing her personality shine through. Six months later, She is still in therapy at least twice a week, still on medications for depression and anxiety, we are still loving her intensely. It is becoming less and less of a struggle to get her to do normal teenage things.
I am heartbroken that Montelukast stole almost a year of her life.
Both my children have suffered terrible adverse side effects from Singulair/ Montelukast. Side effects included violent nightmares so vivid of people stabbing them or them stabbing others, and driving off a cliff. They suffered from TICS even being diagnosed with Tourette’s syndrome (medicine induced), OCD, Asthma (medicine induced) Anger, rages, pins and needles in their legs, paleness, social withdrawal, aggressive behavior, upset stomach, stomach pain, anxiousness, insomnia, restlessness, twitches, speech delay, weight gain, panic attacks, constant hunger, talking in their sleep, sleep walking, headaches, excessive nose dryness, muscle leg cramps, frequent urination, forced urination, blood pressure abnormalities, numberous times getting bronchitis and pneumonia. They became hypersensitive to artificial sweeteners, preservatives, dyes even after stopping the medicine (they became hypersensitive to the ingredients of Singulair/ Montelukast). Thank you for your help spreading the awareness of the horrific side effects of this medicine. This medicine has robbed my children of their childhood. Parents need to have a warning of the side effects BEFORE giving this to their children.
Our daughter’s montelukast side effects have been horrific and we are under no doubt whatsoever that the drug is to blame because the timeline of her starting and stopping the medication is in total synch with changes in her behaviour.
Unfortunately we only realised the link when it was almost too late when our daughter presented this spring with suicidal ideation and self harm.
When she started her treatment in 2013 we had no idea of the existence of the side effects. To our shame we never looked at the leaflet. We weren’t looking for them and so we didn’t find them.
Her academic performance suffered after starting but we didn’t put two and two together until she had a total breakdown this year. The most terrible effects coincided with her stopping taking the meds for a few days. We have learned that sudden stoppages can be devastating.
My wife started to look for clues and found the Facebook group on montelukast side effects.
In recent weeks we have discovered notes in her bedroom dating back to her start on the drug that were extremely sinister, talking of sharp objects such as knives and needles. Samples of her creative writing that we found was dark and laced with murder and depravity. We didn’t notice that at the time because she had handed this work in to a teacher.
Thank you so much for this article.
My son was on Montelukast/singular for two years from the age of seven until nine. He suffered nosebleeds, stomach problems, bedwetting, And even worse he began to have night terrors and terrible nightmares, severe anxiety, depression, OCD like behaviors, sensory issues, his handwriting got worse, his relationships with other kids suffered, he developed a constant need to bite or chew on things, and developed an eye rolling tic. The effects didn’t all show up at once. They were gradual and built up over time. His doctor didn’t think the medication was the issue. We thought about psychiatric help. After stopping the medication most of the issues dissipated however some lingering effects are still there including some anxiety and sadness that are worse if he hasn’t slept well or has eaten too much junk food. He never had any if these issues before.
our son was on this for 2 years and played havoc with his emotions and behaviour. 1 year off still experiencing night terrors but getting better
My 9 year old daughter was prescribed Montelukast after two severe asthma attacks that took place within one week. She had previously been stable for a year but we were told that this was the best medication for uncontrolled asthma. No mention was made of potential side effects and after two weeks she started complaining of terrible headaches and nightmares, anxiety and feelings of uncontrollable sadness. She became very irritable, tearful, aggressive and completely unstable. She would be up until midnight sobbing that she could not sleep and described absolutely horrific, bloody nightmares. Had I not looked up physical side effects (she was also spitting up mucus) and realised that her behaviour fitted the psychological side effects too, I would not have made the connection with Montelukast as it had not crossed our minds that a medication prescribed for respiratory issues could have neuro-psychological side effects. The support group I found on Facebook was an absolute savior and we stopped the medication immediately. The withdrawal symptoms were alarming for a few days but we are lucky in that she has completely recovered.
I am very grateful to the parental community I found online and to their extensive research and advice, and warmth. It is absolutely crucial that medical practitioners should be made aware of the potential side effects of this widely prescribed medication. In the UK, the national guidelines shared with all medical practitioners have not been updated since 2016 and do not reflect recent studies and the severity of some of the side effects, not to mention the fact that these side effects are described as extremely rare, which is known not to be the case. In the last two months I have researched these side effects for articles which have appeared in the Mail on Sunday in the UK and have come across pediatricians, respiratory and allergy consultants who agree that whilst Montelukast can save lives, it is also now known to be extremely dangerous for a large number of patients and warnings should be issued much more clearly.
My son began taking Montelukast nightly in 2016. After he began taking this med he suffered from worsening asthma, headaches, irritability, sleeplessness and a constant shaking of his leg. The most traumatic side effect experienced was the loss of his life. On May 6, 2017, my son died by suicide. It wasn’t until 7 1/2 months after his death that the link to the side effects was made to Montelukast. We were never given a warning or told of the possible severe side effects. His name is Izaiah and he was just 17 years old. He had goals of becoming a missionary and going into the medical field. He was class president and had a 4.41 GPA. This was not my boy who took his life it was the medication that took his life from him.
I am so very sorry about your loss. I’ll pray for you. There has been extreme losses of many sorts told here….is it time for a lawsuit? It’s not about money but about bringing attention to this problem.
It’s so wonderful of you to share with others to help others….maybe someone who hasn’t gotten on this med will see it. thank you for that.
Dear Dru, How horrible that you have had to suffer such a great loss. My heart goes out to you. I myself have been suffering for years, not knowing which medication is causing all my issues, restless leg syndrome, trouble concentrating, persistent coughing, extreme irritability, and the list goes on. This tragedy must not go unnoticed by the medical associations/ creators of this drug/ ALL physicians!
They MUST know what is happening to our young children and adults alike and the devastation it is causing in their lives and the families who love them.
Please know you are remembered in my prayers and our Lord knows your suffering.
I am so sorry for your loss and will be praying for your family. I can’t even imagine something this horrific. We just got a daughter off of this medication she was on it for 6 months and becoming very depressed and suicidal. I started to research this drug and found out how dangerous it is, nobody told me. God bless you and your family.
My twelve-year-old son suffered severely in 2016 from just three weeks of using montelukast for seasonal allergies. This prescription was written and handed off without a hint of a warning—just the suggestion that it should do wonders for my son’s congestion and itchy eyes. This pill turned his life upside down—it affected our entire family. He experienced intense anxiety and obsessive thoughts that lasted months, long after he stopped the medication. Symptoms worsened, despite doctors telling us that he would be fine once the drug was “out of his system.” This drug can be very dangerous for some children any my only hope is that the medical community becomes more aware and parents are advised of the potential HORRIFIC side effects. I would never have had my son take something with such a warning for seasonal allergies.
I’ve never read anything like it – child after child suffering the horrors of a medication that should have given them the chance of life without the irritating, and often dangerous, symptoms of allergies and asthma only to face far worse outcomes as a result of taking the tablets.
The young age of many of the children whose stories are recorded here is extremely concerning. In fact, the thought that such young children NEED such a strong medication in order to breathe freely is frightening. That the air that we breathe, the food that we eat, the water that we drink etc….……have come together to cause such a huge number of affected humans is a frightening thought. Adding a substance to the mix which can assault a child in such a way is beyond disgusting. Refusing to admit that this medication causes the side effects is beyond the pale.
How many more instances will we need to hear about before the medical world wakes up to what it is doing? We often see an advert for money to provide ‘clean water’ for children in faraway lands – it’s about time that our communities woke up to the realisation that OUR OWN COUNTRY can be more dangerous for many youngsters than the ‘dirty water’ shown in the hope of melting our hearts. Of course EVERY child should have clean water to drink but, as important, surely, is the safety of medications prescribed for our own children.
My son was taking montelukast 5mg for nearly two years through asthma.
At first I put his side effects down to him having asthma because I was never told to look out for any side effects and was told the drug was safe.
Nearly staght away he started with night terriers, his anxiety became 100x worse, depression kicked in, suicidal threats, couldn’t sleep, face and leg twitching, throat clicking, worried, being called into school asking if anything has changed because of unusual behaviour (why I didn’t think of the tablet?) Sounds silly but he would start talking weird to the wall and have very uncontrollable giddy hight and very sad lows.
Although this was VERY upsetting NOTHING compared us for what happen when stopping.
5 days after stopping one of my son’s eyes rolled up into his head causing server doulde vision. Took him to ANE to be told to prepare for the worse (this was now over 1 tear ago) after an MRI they have found a lesion on his brain (brain tumour/damage there not sure) he still continues to have repeated scans and eye test. This has affected all the family as you can imagine and I’m 1000% convinced it’s because of montelukast and would not want another child to go through this. My son is under the eye hospital, Christies, asthma hospital, new children’s hospital and is seeing a neurological councillor all because of montelukast. He also still has a lot of side effects, I’ll just had I did wonders for his asthma.
My daughters story is so similar to this one. She took Singulair/Montelukast for about 7 years. Looking back, there were all kinds of random side effects going on that we never associated with the medication. She tended to sleepwalk sometimes, and complained about her legs hurting really bad when she went to bed at night. I noticed an increase in anxiety and hyperactivity after she went on, but her doctor chalked it up to “normal preschool development”. She was mostly ok from then on, but after a dosage increase, we actually noticed her allergy symptoms increasing, and a push for more medications. Although I increased her medications if she caught an illness, she was only on Montelukast the vast majority of the year.
Once she turned 10, everything started going downhill. We noticed she would start fighting us over things like dinner choices but then kick and scream and have tantrum-like behavior for literally hours over it. Afterwards she would tell us she was such a bad kid that we could not possibly love her. I remember at that point saying to my husband something is not right, this is not normal. She also lost interest in activities she normally enjoyed.
Maybe 2 months after we started getting concerned, she told us she kept hearing voices in her head that revolved around death. She then began crying almost nonstop for several days while I dig into everything. The only medication she was on was Singulair, so I googled for side effects and lo and behold, so much of what was going on with her sounded like side effects of this drug (which doctors continually denied).
I wound up taking her off and her allergist again told me there was no way it was the medicine and that she must be going through other issues. I said too bad, I’m pulling her off anyway. She almost immediately said she was feeling much better, but then after about a week, her withdrawal symptoms started and she was worse than ever, but now with an incessant cough. I was able to get rid of the cough with a week of Qvar, but the 2 months that followed were absolute HELL mentally. She had night terrors constantly at night and would beg for help from everyone. She would have angry outbursts every day and scream and cry for 2 hours at a time. Nothing I did could stop them. I had to put her in counseling, where I was treated like it was my fault for not disciplining her enough. What? NO. Anyone would tell you I’m hands on with my kids and nip any real problems in the bud. This was different. This was sheer terror, rage, and feeling impending doom 24/7. She was convinced she would never feel better and honestly, I wondered myself. But after 2 months, she started rebounding rather quickly. By 4 months after stopping, I mostly had my kid back, honestly a different kid than I’d ever known. She was happy, hanging out with friends all the time, active, and any time she got upset, it was brief and mild.
The withdrawals from this are very real and last a lot longer than the 24 hours doctors tell you that it takes for the drug to leave your system. I would hesitate to EVER put a child in this drug.
My daughter was born at 24 weeks gestation and at 2 years old was put on montelukast. The day the pulmonologist prescribed this medication I questioned why she needed it, he replied that he is diagnosing her with reactive airway disease. I really didn’t feel she had any issues that required this medication. Within the next two days my daughter became aggressive, refused to go to sleep, would stay up for hours started biting. Before I knew it she developed a cough and oxygen levels started to drop. Our pediatrician diagnosed her with croup and sent us on our way. A few days after we were being told to rush her to the hospital for stridor. While in the hospital my girl developed pneumonia. I told the doctor’s at the hospital to discontinue montelukast because my mommy gut said so. They agreed to stop but I would need to start her up on the medication once we brought her back to a healthy baseline.
Fast forward to a week later. Dr orders were to start montelukast again. My daughter with speech delay started to bang her head on the walls, the headboard to her bed, the bites became harder and pinching and scratching. Sleepless nights went into sleepless days. I prayed that she was able to talk to tell me what she was feeling. I immediately called our pulm who was out of the country and no help but left a message then called our ped who told me it was typical two year old behaviour. I argued and said that this isn’t my happy outgoing two year old. This is when I found the montelukast side effect support group where I was educated on all side effects. I immediately stopped montelukast. The very next day I received a message from our pulm office to discontinue meds and to bring my daughter in asap and it wasn’t untill this appointment that our Dr said that these were possible side effects. Well why didn’t he discuss this with me prior, why didn’t he tell me what to look out for? Answers I still haven’t received.
Here we are 7 months later. My daughter has been cleared from the pulmonologists with no health issues and absolutely no reason for any meds besides albuterol if needed. She has sensory issues but is back to her happy self. Giving hugs and kisses and saying I love you.
Thank you for bringing this topic to light some more. Doctors and nurses really need to discuss side effects of all meds when prescribing, especially montelukast and to let us know what to watch out for. Also should never be given to a child or adult that is non verbal because we have no idea what they are going through. It’s difficult enough for children and adults to tell others how they feel as is.
In 2017, my oldest son was 22 years old. He had suffered from seasonal allergies throughout his teenaged years and over the counter medicines provided only temporary relief. He was set to graduate college that year, so in February of 2017 he went to see his GP for some help until he could get allergy testing that summer after graduation. He was prescribed Singulair (Montelukast). I was so happy he was getting relief – he had just 6 weeks to graduation and wanted to finish strong without constantly being “stopped up”. I had heard of Singulair – my husband had taken it for about 2 years – and we never had any reason to question its safety. It had been around forever and we had even heard it had been considered for release as an over the counter medicine.
I gave it not one thought.
Not one thought.
Until my son took his life – after 12 days on the medication.
And the truth is – I still gave it no thought even after that. As we combed through every nook and cranny, over and over we were asked, “Had he taken any new medication? Anything that would affect him?” “No!” I cried. “Just an allergy med change. Nothing major.”
Nick did not suffer from depression. His grades were great. He was an honors student. He did not have any kind of mental illness. He was graduating from college. He had plans for the future — ironically in the medical field. He had normal stress – no more or less than any other 22 year old. He had terrific support and was close to his family. Healthy in every way. Just bad allergies.
Just bad allergies…
I cannot undo what has been done. How I wish I could. But I can – and will – tell his story. I, and everyone who knew him, remain convinced Nick suffered from the devastating and so-called “rare” effects of this drug. If I can make a difference, if I can help someone else – I will. Over and over the medical community scoffs at what people say they feel as a result of taking this drug. We need to do better. We can do better. We MUST do better. Our children are worth it. We must follow the red flags where they lead us and investigate, research, and ask the hard questions. We cannot be afraid to do what is right even if it’s not popular. Lives depend on it.
My son has/is suffering the effects of this drug. But that is nothing compared to what you and yours have suffered. I’m so sorry. Thank you for telling your story so well
I am going to be brief ,my son took Singulair(Montelukast) for 17 days ,he ended up taking his own life after suffering very badly for all those days.
It was in 2007 ,summer was starting and so was football camp.
My son Cody Miller needed allergy relief, so when he went for his sports physical ,my husband mentioned his allergy prescription for Allegra needed to be refilled.The doctor that saw him , it was not his usual doctor ,he gave a prescription for Singulair.
My husband didn’t fill it and talked to me about it when he got home,I called and disputed it ,I wanted the Allegra,it had worked for years and that was how I viewed it.
Now that being said ,Cody had seasonal allergies no asthma!!The doctor worked to convince me by saying ,(little to no side effects)
I filled it and read the Patient medication information , there were no worries there, no mention of any Neuropsychiatric side effects ,but that was what I was witnessing when my son started suffering.I watched my son melt down slowly and we really couldn’t understand what was happening ,then he had a bad day at a fun Park he worked at,he came home and hanged himself, he was just 15!!This child went from a normal child to an anxiety ridden mess,this is the saddest part.
The prescription was suppose to clearly say depression ,anxiety and possible suicidal ideations were a side effect ,but it didn’t.
I couldn’t save Cody ,but I could help to fight to get the language and warnings changed.That is a condensed version of what we suffered, the loss is to much for us ,but this is my small contribution to thank Laura for her hard work.
So many of us have suffered due to this drug, but obviously no one more then you and your family. Your story breaks my heart every time I read about it. The strength that you are somehow able to show, just by telling Cody’s story is amazing. I know it gives me and my family strength in telling our stories by seeing you be able to tell yours. I only wish I could give you more then a Thank you.
My son started this aged 2. All was well and his asthma was well controlled.
However slowly, but not immediately, he changed.
We thought it was ‘terrible twos’ and had no link to the medicine as it didnt start immediately he started taking it.
It treated his asthma really well. No more hospital visits.
However gradually his behaviour got worse and worse. Completely refusing to go to school. He started having massive meltdowns, debilitating anxiety (meaning he couldn’t do any extracurricular activities), aggression (hitting and kicking teachers at school, his parents and sister), separation anxiety, chewing his clothes constantly and awful night terrors. As well as depression and other effects.
We went through mental health services from our GP. No-one reviewed his medication.
Eventually I found the link to montelukast but this was 5 long stress-filled years later.
Withdrawal was long six weeks of deeper misery as the anger and anxiety worsened. But gradually we saw improvements.
This medication ruined his happy childish carefree years.
And the effects are still there more than two years later. In particular his anxiety and anger management. We think it has changed his developing brain permanently.
If anyone in our healthcare cycle had checked on side effects, during the repeat prescriptions for nearly 5 years, we might have been saved from some of this nightmare. And if we knew the side effects were relatively common (>12% say recent studies) then we might have realised ourselves what damage this drug was doing.
Truly appreciate this article by Laura Marotta and the comments shared by many others.
My story is also related to the horrible side effects of montelukast/ singulair, and later the withdrawal symptoms after leaving it.
Our son – now 20 – was prescribed Montelukast- first Singulair and later its variants- since he was around 10 years old. The doctors told us “it is safe”! And we would not have known otherwise till he went to the university in 2017 and struggled with several problems like insomnia, anxiety, low motivation, etc. The problems became acute and finally he was diagnosed with Major Depressive Disorder in September 2018. At that time, trying to understand what was causing this- he only researched and found out about the adverse effects of montelukast. Since then he has got complete health checkups also done- and sadly enough the prolonged use of this medicine has had a negative impact on various other body functions- liver function, heart palpitations…
Please raise awareness -Doctors MUST inform the patients and families about this. The medicine does not carry the black box warning in many countries like India, Thailand, and other developing countries- please help!
Thank you so much for this post. Laura you are awesome! You have put so much time and energy into making sure people are aware. Thank you! My son was on Singulair from 1.5 yrs until 5 yrs old. We suffered terribly because of this medication. It stole who my little boy would become. He had horrible aggressive melt downs, anger issues, adhd, odd, sensory issues, bladder issues, seizures and so much more. He is 13 yrs old now. It has been a very long road to recovery. He still deals with some autism like issues and seizures have not completely stopped! I feel this Med has altered my son forever. I would do anything to make sure this doesn’t happen to any other family!
‘Enough is Enough!’
Spread the word and create an awareness that is second to none.
POWER TO THE PEOPLE.
My niece was on this drug for three months at the age of three to help keep her croup under control during winter. I lived with her and her father during this time and after the first dose she became manic, talking a hundred miles an hour, practically bouncing of the walls. It was like she had no control over herself. I stated my concerns to her father and grandmother but sadly they wanted to keep her on it. It wasn’t long before she started saying things like ‘I just want to die!’ and ‘That’s it I just want to kill myself!’ She was three years old! No one ever spoke like that around her and I was heartbroken to hear her talking like this. We also noticed that her right eye began to turn. Winter ended and I was finally listened too and she was taken of montekulast. She is now six years old and has never spoken about suicide again but she has to wear glasses and an eye patch for three hours a day.
At a different time I had two of my young cousins put on montekulast ages 5 and 6. They started talking about getting knives out of the drawers in the middle of the night and killing my Aunty, plus tell kids at school they would do similar things to them. My Aunty took them back to the doctor (the same one that put my neice on this drug) and the doctor encouraged her to take them off this medication as they had been getting a lot of complaints about side effects.
I see in a support group for victims of these side effects babies not even a year old being put on this drug suffering night terrors, becoming enraged, head butting etc and it breaks my heart!!! This drug is dangerous and should be banned!!!!
My daughter took this for 8 months she became a mess,suicidal thoughts, aggression, anxiety, depression, ocd, tics. She would sleep with a knife under her pillow and shower with a bathing suit on while standing on a stool. It has taken a year to get over the withdrawal symptoms and she has lost about a year of her life. The Drs did not identify the problem, she was just another crazy teenage girl.
Thank you Laura Marotta and all those who have shared their stories here. There is a dire need for raising awareness for the possibility of withdrawal after stopping Singulair. I remember thinking this was something unique to my child when we took my son off Singulair cold turkey eight years ago. Within days of stopping we saw an abrupt appearance of severe symptoms (hallucinations, panic attacks, heart palpitations, severe fatigue, difficulty falling asleep, and akathisia (the inability to stay still) which lasted several weeks before subsiding. There had been milder side effects (night terrors, anxiety, fears) while on Singulair but coming off abruptly caused these to escalate. The multiple doctors we consulted insisted it had nothing to do with the medication or going off Singulair. But after countless tests – nothing else resulted as the cause. The doctors could offer no guidance because there was nothing in the medical literature back then to recognize this. This prompted myself and other parents to gather testimonials from hundreds of parents which we submitted to the FDA Pediatric Advisory Committee in 2017. We now know that they are reviewing the information and we hope that this withdrawal effect will be investigated and recognized. We must spare those affected from being dismissed when withdrawal occurs and to help them recover from an adverse reaction as quickly as possible to minimize and/or eliminate the possibility of long term effects. Thank you.
My story is remarkably similar. My son was a happy, well adjusted little boy when he has a severe response to Singulair (psychotic breakdown at 6 years old including suicidal ideation, self loathing, depression, aggression etc) which worsened dramatically for months after ceasing the medication.
Whilst he has made huge improvements, he still is not completely recovered.
Thank you for sharing your story and getting this information out there. It’s amazing how many people I meet who are prescribed Singulair and have no idea of the side effects.
The following a the letter I sent to the FDA. At 19, my daughter still lives with side effects, both primary and secondary.
August 23, 2014
To Whom It May Concern:
I am writing to make you aware of what my family and I have been through for several years due to your negligence in effectively testing Singulair. My daughter was prescribed Singulair for her asthma at the age of 6.5. She was already taking Claritin, Benedryl, Flovent, Flonase, and Albuterol. My husband and I questioned the amount of allergy/asthma medications on several occasions. We were assured by various doctors that these medications were safe individually, as well as together.
Shortly after taking Singulair, she worried excessively, and started seeing a therapist. She continued to see her for the next 3 years. The worry and self-esteem issues increased. She had small tantrums and developed several tics. By last spring, she dropped out of dancing, swimming, Girl Scouts, and Hebrew School. She became anxious and paranoid around kids at school. Anytime she had to speak or perform in class, she would panic. She wasn’t sleeping well and put on extra weight. She roamed the house in the middle of the night looking for food, which became a safety issue.
In May 2009, she was put on a low dose of Zoloft and diagnosed with generalized anxiety disorder. She still had many symptoms. Over the summer the Zoloft was increased to 50mg, then in Oct the Zoloft was increased to 75mg. At this point, her behavior was uncharacteristic of her. She was getting into trouble in school, could not focus in school, and complete assignments. She was more paranoid. She ate excessively. (She always did well in school, academically. She was always quiet and was never a behavior problem.) Then at home she began to have major outbursts. She became extremely aggressive, and angry. She refused to go to school. She continued to wake up in the middle of the night, eating.
It was affecting our daily lives, including our then 5 year old daughter, who was frightened of her sister. With all of these uncharacteristic behaviors we questioned, why all of a sudden. Her doctors thought that maybe this was the start of a more serious mental illness. The psychiatrist and therapist thought she should be evaluated in a hospital and in school, and would benefit from attending a therapeutic day program. We began researching schools. We knew this just wasn’t our daughter and something was wrong. Soon after, I had come across information about Singulair, its side effects, post-market research, and studies. We consulted with her pediatrician, who was also unaware of these side effect changes, and agreed that she should stop taking it.
Singulair caused her to be excessively anxious and at times depressed, tantrums, and develop various tics. Then unnecessarily adding Zoloft caused her behavior to spiral out of control. Our lives were turned upside down. In addition to the cost of the years of co-pays for dr. visits and medication, my husband and I have missed many days of work, and our daughter has missed many days of school, and numerous assignments are incomplete.
She is now 14 and has been off Singulair for 4 years. Since she has been off Singulair, her behavior has been much better. She is not angry, aggressive, and was much more focused in school. She began picking up the pieces of strained friendships. However, we still deal with issues of anxiety and self-esteem which still triggers motor tics. Recently she has been diagnosed with PCOS (polycystic ovarian syndrome) and is pre-diabetic. This summer she has suffered from endometriosis due to the pcos. I often wonder if Singulair caused this hormonal imbalance, as it has so many other horrific side effects??
Unfortunately, there are many stories like this. Children suffer needlessly because they were not accurately informed of Singulair’s dangerous and possibly life-threatening side effects. It seems that a lot of these situations could have been avoided if patients were notified when the additional warnings were put into the consumer information. Patients taking Singulair before the post-market studies, would never know about these changes, or think to look for these changes if patients were not made aware of them by their healthcare facility/provider or pharmacist. It is heartbreaking to see your child suffer so much and for so long, when it all could have been avoided.
Thank you for your time,
My grandson experienced severe psychological damage as a result of this medication. Anxiety, depression, rage and many many times saying that he wished he was dead. Horrific nightmares occurred almost nightly. When my daughter discovered the cause was montelukast she stopped giving it to him immediately. The symptoms were actually worse for about 6 weeks but then very slowly he began to improve. After 3 years he is almost fully recovered but he does have the occasional dark times. Unnecessary damage was done to my grandson and I will never forgive the medical fraternity for not recognising or admitting the real risk of this medication.
Thank you Laura for sharing your story.
It was only by chance a year ago – that I came across any info about the adverse affects of this drug.
An article on Facebook during a sleepless night at 5 am about a family in Australia who had lost their daughter. It sent a shock through my body as a I read and recognized all of the adverse effects – we were in the middle of life threatening crisis caused by montelukast.
We were living it. It is a medical nightmare.
That article saved our family member’s life and we were able to stop this drug.
Your story will save the lives of so many people who are completely unaware that a medicine for allergies could end someone’s life by suicide and be the cause of so many other serious life changing neurological problems.
This drug is responsible for so much ‘misdiagnosis’ due of lack of lack of awareness
and often often dismissive attitude of medical community.
Thank you Laura and big hugs from our family to yours.
Our paediatrician prescribed this medication for our daughter (1.5 years old) after 4 admissions to the hospital. He said it was not approved for use under 2 years, so to cut the dose in half. When asked about the side effects, he stated a small number of patients develop emotional/behavioural changes, so taking the drug is our choice. I appreciate him for being well informed on the drug and presenting the information up front to us as parents. With a history of mental health in the family, we decided not to add this medication at this time. It breaks my heart to know other parents aren’t being given the same upfront information by their trusted doctors. Health care providers and parents/caregivers need to be a team in promoting health. I hope that this blog can open up a further dialogue in the medical community, after all, health is all encompassing. It does no benefit to treat the asthma if the child is unable to cope with basic life functions such as developing relationships, going to school and sleeping restfully.
As a 60 year old I took Montelukast twice. 10mg once and the paediatric dose of 5 mg once. Each time on day 5, I woke feeling like I was emotionally dead. It is quite difficult to actually verbalise so I feel for all the parents out there who have have been prescribed this medication for their children. From my short experience I can see how easily it can lead to suicide.
It’s scary and quite unacceptable that it’s taking the pharmaceutical industry, government bodies and MSD in particular so long to recognise the neuropsychiatric side effects of this horrid medication especially as this information has been known for many years.
Thankyou to all who bring awareness to the awful side effects that can happen.
My beautiful youngest child was given singulair to help with her asthma. She had atopic dermatitis starting a 3 months old. Weeping sores on her body. The dr warned us that she would most likely develop asthma, which she did, starting in middle school.
She had it controlled with inhaler. Entering high school her allergies made her asthma flare up. She was missing days of school so dr. pescribed singulair at the end of her junior year.She was depressed that summer but we didnt know about the side effects.
She stopped singulair mid fall as her asthma symptoms improved because allergens were lowered.
At the beginning of February the next year, the dr said to start taking singulair to ward of symptoms of seasonal allergies. At this time she became extremely depressed, not sleeping, withdrawing from us. We sent her to therapist, met with school counselors and teachers, her grades were excellent but her behavior was troubling. We still didnt not make the connection. 6 weeks later our beautiful child that had many great plans for her life, including graduation trip to Europe and becoming red cross disaster relief worker, on the night of her senior prom, told her friends to go to prom without her she would catch up with them. She took her life after they dropped her off thinking they’d see her later.
This drug pushed her depression to the breaking point. After her death we went through all her medications. Her father found the bottle of singulair and not knowing what it was, looked it up online and found the devastating side effects listed. We filed report to FDA, our dr filed also.
Her name is Sara Hozen, she died May 2017
This drug has stolen so much, please please black box it. Make the drs tell of side effects and have the patients or guardians sign a letter stating they have been informed.
My son was 2 when he was put on this drug. For 2 years we struggled with the nightmares and aggression,bed wetting,sadness,hallucinations,the list goes on and on…it was only by chance I Googled the medication and there it was in black and white.. everything my poor son had been going through.. I broke my heart for him 😞 The GP totally dismissed us and said there are no side effects to Singulair and then proceeded to tell me that my son should never have been put on the drug in the first place as he didnt have asthma !!! Furious is not the word 😡 But finally a story has been done in the UK about Singulair in the Daily Mail for a few of us parents and slowly the word is getting out there…this drug is damaging our kids and something needs to be done about it !!!
I read the DAILY MAIL article. They were correct UNTIL the end when they warned not to come off of singular suddenly AS ASTHMA SYMPTOMS MAY GET WORSE. NO MENTION OF WITHDRAWAL! The truth needs to be in the news. And not just in the UK.
Hi. My 10 year old son has been on singular on and off since he was about 2 yearly old. Last year, he was struggling with tons of anxiety and irrational fears about death. There was also bed wetting, ice behaviors where he would check his pulse several times a day and facial tics of opening his mouth as if he was going to yawn. He saw a therapist for 3 months and worked through it but still struggles with some minor anxiety and shyness. He had his last dose yesterday. I just learned of the black box warning today and feel
Horrible that I didn’t know. How do I start to wean him off this medication or can I just stop it?
My daughter was on montelukast from age two age five. After stopping and restarting for an allergy test, her anxiety was so bad she wouldn’t leave the house. She withdrew from all sorts of things she had loved in the past. I didn’t connect it to Montelukast because she had taken it for so long. But after I reached out to a therapist, she told me to look into the side effects. We stopped the drug a week later and immediately saw her meltdowns decrease. But the anxiety is harder to “fix”. It’s been 8 months and we are still working through the anxiety. I’ve reached out to several doctors of varying fields and only one understood, a naturopath. It was nice to have someone validate my concerns but beyond that, there were no answers. Just different paths and different tests that might possibly lead to answers but more than likely, just more paths and more tests. I try not to be angry about the past and the childhood this drug stole from my daughter but if I could go back and refuse this drug, I’d do it without question.
This drug has changed my son (possibly forever). He is nearly 4 years since his severe breakdown. Depression, suicidal thoughts, self loathing (inability to even look at pictures of himself) and alot of aggression. These side effects are still bubbling away under the surface.
He was 6 when this drug started affecting him. Six. To see and hear your sweet little boy change so drastically was heartbreaking. The effect it had and still has on my son and the rest of the family is something no family should go through.
Thank you for this article. So many of us are dealing with these side effects but Hopefully the article will help prevent other children and families from going through this.
It’s tragic to see just how many have been affected adversely by taking Montelukast.
My son started taking this for exercise induced asthma has a 15 year old. A very keen cyclist It worked well for him.
After 2 years he was brought off it. That’s when the issues started.
Overnight he went from a happy confident young man, a grade A student and an extremely accomplished cyclist to an anxious panic stricken child. Needing constant company and support, unable to function as ‘normal’ and without the confidence to compete in the sport he loves.
My twin sons have been on Montelukast (Singulair) from age three to 13. This drug has caused one of my twins severe anxiety and the other aggression as well as stomach issues, bleeding and depression. Once off the medication the aggression and emotional outburst continue to resolved in one of my sons. However, my other son, is still dealing with the anxiety, the thoughts plague him throughout the day . This anxiety is harder to deal with. It has been months and we are still dealing with it. We have reached out to the pediatrician, a therapist and a naturopath.
It breaks my heart that my son is dealing with this because we gave him a medicine to help with his asthma and now he has a broken spirit and his personality has totally changed. I want my sweet, funny, and loving boy back. All I can say is parents should have been told that this drug had these life altering changes.
Laura, thank you going to bat for our children. Wonderful article! God bless you and your family. It is wonderful to have someone validate what we as a family is going through.
I wish I had seen an article like this before I began taking Singulair. I wish my doctor would have mentioned the possibility of neuropsychotropic side effects when she prescribed it. All my doctor said about Singulair was that it would work wonders for my asthma. And it did. But I would choose to suffer through the wheezing and shortness of breath any day over the debilitating anxiety symptoms I began to experience 5 months after starting the drug. A year later, my symptoms are much improved, but I believe that this medication has fundamentally changed something in my brain, and I may always suffer the effects to some degree. And if it could do this kind of damage to my adult brain, what kind of catastrophic damage is it doing to the young, developing brain? There are so many stories just like mine and just like the author of this article. It is my hope that the FDA will listen and take the actions needed to protect countless more from this unnecessary suffering.
This drug was prescribed to my 11 year old son, we were never warned of the side effects the drug could have. After he experienced horrible anxiety, depression, headaches, stomachaches. Changed vision. The doctor still did not suspect the Montelukast. After stopping the medicine cold turkey and 7 months later, we finally have our son back to normal stricter prescribing information MUST be added, so that parents are aware. There are too many kids hurting because of the neglect of the pharmaceutical companies!!
Thank you, Laura, for your excellent article. All parents should be aware of the possible effects this drug could cause for their children.
My grandson was prescribed monelukast ar 4 yrs old and took it for a bout a year. He went from being a bright, happy, lively boy to one who was severely depressed (frequent 2-3 hour heart-breaking sobbing jags), having daily rages, throwing and breaking glassware, insomnia, paranoid, nosebleeds, leg pains, and looking forward to death. I had to hide scissors and knives because he was always eyeing them and saying that he wanted to hurt me. I couldn’t turn my back on him because he would hit me when he had a chance.
His doctor dismissed the behavior as typical for his age, and said not to worry unless he started hallucinating.
His parents finally weaned him off of it to see if he improved and within a few weeks he was himself again, thank goodness. There are some residual effects. His memory is not as sharp as it once had been. He still gets occasional leg pains. But the depression, rage and violence is totally gone.
Awareness is a patients right. Thank you for your work to bring awareness.
My daughter was on this medication for an allergy at the age of 14. She took it for several months. We were not warned of the potential side effects. Within a couple of months, this medication snuck severe anxiety and depression, auditory hallucinations, stomach pain, headaches, visual changes into her previously uneventful, happy life. It changed all of us. It took us another month or so to figure it out on our own that the drastic change in her was due to this medication. When we had asked her pediatrician, she had told her just to change the time of day she was taking it. Coming off of it took 7-8 weeks to return to 80% normal. She received counseling for months to overcome the awful thoughts that were put into her head and required constant supervision from her father and I, as we were worried for her life. She has had bouts of anxiety creeping back at times, and we do believe this is a lingering effect of this medication. She was not an anxious child, always happy go lucky. Montelukast, caused a huge hole in the beginning of her high school career and affected her grades. While she graduated this May with honors, her GPA was lower due to the struggle her freshman year. We have been advocating and educating about this medication since. This medication Needs a Blackbox Warning. Education concerning the long withdrawal potential needs to be researched, as well as permanent effects that are staying with many of our children on this medication.
How can something as tragic as these accounts, slip under the radar?
I feel very sad for the people who have had to come to terms, with what this medication has done to their loved ones.
Sadly, if one is unable to make the connection, it can easily be mistaken for behavioural/emotional issues.
If there is a common distressing pattern occurring, surely, one would think that it is immediately taken off the market or have a box warning placed on it!
Where is the ‘due care’, when many know about the harm that this medication induces?
How long does it take before drastic changes are made to make people aware of these adverse side effects?
I totally agree with Mary H.
Refusing to admit that this medication causes the side effects is beyond the pale
Another 11 year old sufferer here. We actually heard the acute psychological effect beforehand. The problem is the onset of the symptom comes at you fast, like all hell broke loose, and no cure for reversal. He has been confined in home for about 1 year due to anxiety and hallucination. What is your take on this if you are the parents? Would you ever give you child this medicine if you’ve known the dire consequence? In the meantime, you are constantly bombarded with skeptics from the health caregivers. Enough is enough!!
I had a similar experience after being prescribed Singulair after a respiratory issue sent me to the ICU back in 2004. The first side effects I can remember were hallucinations. Immediately upon waking up, I would be incredibly groggy, and I would see tarantula-sized spiders. They would be on the walls, crawling towards me, and sometimes even crawling on me for a few moments, but then I would blink and they would be gone. These made up a majority of what I saw, but some other things I would hallucinate were human-like shadow figures and holes in my clothes. Luckily, this side effect died down after about 2 months on Singulair.
Quickly, I became more and more secluded. I stopped leaving the house because of panic attacks, which affected my schooling and my friendships. My friends stopped asking to see me because I would always say no, and I no longer could attend school because I would spend my mornings sobbing uncontrollably and begging my mom not to send me. This, of course, led to me being pulled out of public school in the 7th grade and starting a home schooling program.
I became irritable, anxious, and depressed. I had no clue what was wrong with me. I would stay up all night long and sleep all day. Things that I used to think were fun weren’t fun to me anymore, and I sat around for years feeling like I was broken and I wouldn’t have a normal life. Even showers and general hygiene became hurdles for me.
My parents were desperate for answers. We tried sleep studies, anti-depressants, therapy, drug trials. I saw multitudes of doctors, and none of them had the right answer. One even told me and my parents that it was because I was a teenager, and he even handed me a book, “Chicken Soup for the Teenage Soul”. I’ll never forget how he told me to toughen up and keep my chin up high as he put his hand under my chin and forced me to look him in the eye.
It wasn’t until one day, years later, we were watching television and saw a news report about woman who’s son committed suicide. They were blaming it on Singulair. I immediately stopped taking it and started my recovery process, which took about a year from what I can remember.
I spent years alone and inside, lost almost all of my childhood friends, sacrificed my early education, and battled crippling depression and anxiety, but after stopping Singulair I went back to my old self.
My son was prescribed Singulair when he was 4 years old because he had an allergy induced asthma attack. We were told to give it to him as needed and that there were no side effects. He took it on and off for almost two years. The last time he took it was when he really started experiencing side effects. He would cry at the littlest things, have extreme anxiety especially at school, hand washing OCD, tell me at bedtime he couldn’t stop the bad thoughts, nervous chewing of his shirt collars, hyperactivity, bedwetting and daytime frequency, stomach pains, dizziness, and throwing up in the middle of the night. At the time it was all happening we had no idea what what going on, all we knew was he was changing and was not himself. That’s the scary part is some of these things are labeled as ‘typical’ childhood behavior but it’s to an extreme no one can understand unless they have lived it. When we finally figured out it was Singulair we stopped immediately. It has been almost 2 years now since he’s been off and we still have bed wetting issues, some anxiety, and he will obsessively pick at his fingers in certain situations. Things just don’t go away after the last pill is taken. More warnings need to be given and anyone taking this needs to be constantly monitored as side effects can happen at any time.
So much suffering and unnecessary loss on this page! My daughter sleepwalked and had horrific night terrors while taking this medication when she was 2 years old. She was on it for less than 2 weeks, and as soon as she stopped those symptoms disappeared… but she suffered from anxiety and OCD for 6 years afterwards. A friend of mine gave it to her 8-year-old son – within days he was telling her he “didn’t want to be alive anymore”. She stopped the meds, he was fine. We were the lucky ones.
Posting this makes me feel very angry and sad, My daughter started to take Montelukast when she was 13 ( she is now 21). she has suffered so badly with the side effects that she made a suicide attempt and ended up in a hospital for two quite lengthly stays – just at exam times. She completely lost her teens and the ability to go to university. Throughout this time and until 3 weeks ago she was taking this medication and no one ever mentioned the side effects ( believe me – she has seen some doctors and therapists) . I cannot believe that this was never mentioned before. After seeing a newspaper article she read – she said that this must be the reason for all of her problems and she has since stopped taking it . If we were made aware of the side effects at the time of the first prescription – we could have put two and two together and would not have put her through the painful last few years . In her words not mine – she could be a completely different person and her journey would have taken a different path.
I would advise anyone to think long and hard about taking this medication. If we only knew then what is being reported now. We just hope that we can get our daughter back to the adult that she was turning into before she took this awful stuff.
It’s so lovely to see awareness of this drug getting out there! Thank you! My 9 year old daughter was prescribed this drug nearly 2 years ago. No warning of side effects from the doctor. She had side effects within 48 hours. Nightmares, paranoia, bad thoughts about herself, worthlessness and many more things. They crept up slowly but by 2 weeks I researched montelukast and found the amazing Facebook group which unfortunately has thousands of members. I stopped the montelukast and things still got worse for my poor daughter. So bad in fact that she tried to commit suicide a couple of times. The local doctors weren’t convinced and hadn’t even heard of any side effects. Luckily we were in a position to seek help privately and after meeting up with a psychiatrist for a while, then a year of seeing a psychologist she has nearly been put back together. We still use coping techniques and know what the triggers are so it can still be a battle, but it feels like now we are winning. This was a 7 year old happy go lucky girl who loved school, her friends and her life . Now we have a 9 year old who missed lots of school, still struggles with the dynamics of friendships while she controls her anxiety (that she never had before) but she is alive and that we are grateful for.
This boy’s story is very similar to ours, my 2 years old daughter started taking Singulair (Montelukast) for allergies for 6 months and started showing signs of behavior issues I didn’t link to the medicine… just thought it was “terrible twos” as a first time mother…she would have manic episodes, rage, demonic like behavior, in a daze, dilated pupils, uncontrollably crying were just a few which would started immediately after I would give it to her at bath time 2 hours long until she would fall asleep from exhaustion there was not controlling or comforting her. I started to notice the behavior would occur after I would give her the Montelukast as they became more frequent so I looked up the side effects and sure enough I found there were adverse reactions and immediately stopped it! I said that it that’s what’s the cause if it all! The episodes stopped immediately so I thought it would just end everything… but here we are 6 months later and slowly started seeing similar behavioral episodes occur with other medications OTC and Rx that would trigger the episodes along with sugar and foods with additives and artificial dyes and sweeteners. I was at a loss on how to prevent it…avoiding trigger foods I would notice, kept a journal so I could figure it out and I even just this last visit with pediatrician asked to prescribe antibiotics in capsule form to avoid the liquid additives…I was doing everything in my power to avoid the episodes! It seemed over time the episodes were getting worse with new issues hallucinations, night terrors, complaining her body hurt at her joints, physically could not get up off the floor. I have been tirelessly trying to find the reason for it all until I came across this boys story by the grace of God that linked me to a support group: Montelukast (Singulair) Side Effects Support and Discussion Group, where I finally found the exact same stories and my eyes were opened to so much more than I could ever get help from our pediatrician who was unaware of adverse behavioral side effects and much worse they don’t seem to go away after discontinuing! I have no idea the extent of damage to my daughter’s brain as clearly this asthma/allergy medicine affects severely in children and adults and the need for awareness with the medical professionals. This medication needs proper warning labels so doctors and patients can be made aware and so monitoring can be done to avoid all of this unknown of this medicine! We need answers as to why and how this drug affects the brain and is causing these adverse side effects and what treatment there is to fully recover from the damage. Because so much is unknown no one can get any treatment or help from medical professionals. Our only help right now is from each other’s experiences from the support group.
My son suffered at the hands of this drug for over three years. It held back his early intellectual and social development and made life very difficult for the whole family. Seeing him unhappy all the time and constant meltdowns over the slightest thing was hard to take. No doctors, psychs or paediatricians ever suggested what he was going through could be linked to Montelukast. We eventually made the connection ourselves and took him off it immediately. There was an almost instant improvement but It has been a long road since then and still doctors do not believe you when you speak about these side effects.
When I took polyethline glycol (miralax) for 9 months for chronic constipation, I got a burning bladder for 3 months. Doctors looked at me like I was crazy…no way could that cause it. So I found on Yahoo a group called MIRALAX and like here…see the suffering! Both groups need a group lawsuit! Writing to the FDA etc doesn’t seem to work. It hasn’t for Miralax. Maybe it will for Montelukast? I’m so BURNED about the suffering from these meds! NO med should have severe withdrawal symptoms! the stories help people share and ‘get it out’ there but action seems to go with this situation as the next step. I wish I was an attorney! I’d take it!
Thank you so much for your article! I started this medication 20 years ago while I was in college. I’m not sure when the side effects actually began, I think around year 3-4. I became severely depressed, had suicidal thoughts, depression and anxiety.
Just last year, my PCP wanted me to see a psychiatrist (I’d already been working with a psychologist on and off for many years). The Psychiastrist looked at all my medicines and asked, “do you hear voices”. That was not one of my symptoms, but led us into the Singulair discussion. I decided to stop using it and saw my PCP for a steroid inhaler. After doing my own research, I read about weaning. So, I decided to go from 10mg to 7.5mg. Within 3 days I was more depressed than I had been in that 20 years. The fourth day, I was suffering withdrawal type symptoms- anxiety, nausea, shaking, anxiety, not wanting to live (like that) and almost took myself to the hospital. Instead, I went back on Montelukast at the 10mg and decided to wait until Jan 2019 to wean much slower.
I’m now completely off (took around 6 months) and feel much better. I’m still on depression, anxiety and sleep meds. I’m hoping to someday be off of those, but that is unknown. Currently, it is wonderful to want to LIVE each day!
I hope this article and all of these comments are seen and read. Warnings need to be relayed to doctors, pharmacists and patients. My husband was recently almost put on this for a cough he had! When my husband said that wasn’t a good idea (regarding the neuropsychiatric side effects), the doctor said, “none of that is proven”. This was in May of 2019!!!!!!!!
This drug has not only affected children’s lives, but adults as well.
There is no question that this drug affects adults also – and perhaps just as often as children. The difficulties children have stem in part from expressing it and being dependent on their parents who of course aren’t feeling the problem themselves.
There is no good reason to believe that any of the antidepressants or sleeping pills or other meds that may be given for problems caused by montelukast and related drugs will work for these problems – there is not a single scrap of research pointing to any benefit in these cases – just as there is nothing pointing to a benefit in the case of anyone with fluoroquinolone or isotretinoin or finasteride toxicity – in all these cases there has to be a worry that the pills doctors turn to may make the original problem worse. If you’ve been poisoned its probably a better bet to steer clear of further poisons
At 13 My child showed neuropsychiatric side effects within a year of starting which continued but were severely and immediately intensified after stopping 5 days and restarting, aged 17. She was awarded numerous academic scholarships for her linguistic skills but notably we saw a sudden failure in maths and science subjects after starting this drug whereas previously she had performed well above average and loved physics. After the rechallenge period the side effects are self mutilation, daily suicide ideation, recurring visions, depression, leg pain, OCD, tic, memory loss, concentration problems, rage, anxiety, stubbornness. One tic is the bouncing left leg. The other is linguistic; multisyllabic words in any language plague her until she has used alternate left and right hands and feet to beat out the rhythm of the syllables.
My son was on Singulair for 6 years. After needing a nubuluzed frequently, it was a releif. The meds keot his breathing problems at bay. I was not made aware of the side effects but looking back now, my son developed a tic, became disinterested, spontanious crying, night terrors, anxiety and suicial thoughts and behavior. His counselor did not believe me when I discovered the Singulair link but, I started weaning him off right awat! His sypmtoms got worse before they got better. It has been a year and I do see a lot of improvement and no mire symptoms. I just don’t know if he has been so dulled by this drug that he will ever be whole again.
Singulair gave me drug-induced-lupus, among other diagnoses and symptoms. After being on Singulair for ~18 months, I developed extreme thirst, and thus I was sent to an endocrinologist for diabetes testing. I started the Singulair in early 2002; the thirst started in late 2003. I had a highly positive ANA (autoimmune indicator), which sent me to a rheumatologist. Other symptoms/diagnoses evolved over time: chest pain (dx: costochondroitis), joint pain, kidney inflammation & pain, night urination, short period cycles, cold hands & feet, lichen sclerosis, two miscarriages, arthritis in my throat (cricoarytenoid joint), tentative ankylosing spondylitis, tentative Sjogren’s. At the time, I didn’t feel that my mental health was affected (I was physically ill; it wasn’t emotional – that was my interpretation), but I was crying on the phone most evenings to my friend and/or fiance, and I was very quick to anger.
The rheumatologist tested my blood every 3-4 months. I finally tested positive for lupus about 18 months after the first positive ANA (& initial symptom of extreme thirst), in 2004. I was put on Plaquenil, which caused the side effect of tinnitus. I sought out alternative treatments for the tinnitus and had a 6-month course of weekly acupuncture & Chinese herbs in the first half of 2006. I moved in June 2006 which ended the acupuncture treatment. At the end of that treatment, I felt very good, and many of my symptoms had resolved or at least lessened. Upon the move, I also stopped taking the singulair upon the move (with a “weaning” that involved skipping/taking pills over several weeks) and sought out a new rheumatologist, who took 11 vials of blood & found no evidence of lupus or ANA in December, 2006. In December, I also got pregnant for a 3rd time and successfully carried that pregnancy to term (and a subsequent successful pregnancy in 2012, at the age of 41). For years, I thought that acupuncture/herbs had cured my lupus, and while they did resolve many of my symptoms, I feel that the timing of stopping singulair upon my move is too coincidental to not consider that the singulair caused my lupus all along. My current interpretation is that the acupuncture & herbs helped with healing (“detox” is a word that some use; I do not) and helped me to avoid the withdrawal that so many others experience when they stop taking Singulair. I took name-brand Singulair, as montelukast was not off patent until 2012, 6 years after I stopped taking the drug. I had excellent adherence; I refilled the prescription every month from 2002-2006. I verified this in 2016, when I first made the connection between my lupus and Singulair timing.
Symptoms that remain include mild cricoarytenoid arthritis (clicks when I swallow but no pain), mild and intermittent costochondritis (may be gone/unnoticeable for weeks), and the tinnitus caused by the Plaquenil (bothersome almost all the time, with significant variation; I stopped/weaned from the plaquenil in 2006 when I moved, too, because the lupus symptoms had been helped by the acupuncture).
Reference for singulair-lupus connection: https://www.fda.gov/media/90925/download
References for plaquenil-tinnitus connection:
Thank you for your efforts to draw attention to the risks of taking montelukast. I can remember the day when my wife called me to tell me about my son’s visit to his allergist. She left there that day with a handful of scripts, one of which was for montelukast. I remember feeling that it seemed like a lot of medication for a boy with seasonal allergies, but we trusted our doctor. There was NO warning to be on the lookout for any psychiatric side effects. If we had any indication of these risks, we would have ripped up the script for montelukast on the spot. Instead, my 12 yr old son went through HELL over the next year, including being hospitalized for 10 days. Thankfully, he has recovered, but the scars from this awful time in our lives are still there for everyone in our family. Doctors have a duty to inform parents and their patients of potentially horrific side effects from taking montelukast. I’m tired of hearing “it’s extremely rare” or “it hasn’t been proven” or even worse “maybe your son had underlying conditions”. My perfectly happy and healthy 12 year old son’s life was turned upside down from taking this medicine for 3 weeks. It’s not rare when it’s happening to your family. Thank you again for shining a light on this serious issue.
My daughter was prescribed this drug and was changed. She suffered from HORRIFIC mood swings, to the point where she would hit, punch, bite, kick and do anything to hurt me. When looking in her eyes during one of these episodes (which would happen until 3/4 weeks AFTER she stopped her 10 day dose) I noticed that she was blank..as in she wasnt herself.
She has now been off it for about 4 months and she still occasionally has violent episodes.
This drug should NOT be prescribed anymore, for us the side effects were horrible.
Our experience is very similar in ways. We discontinued using Singulair a year ago, but still my son struggles. He has since been diagnosed with PANS, ARFID, Alopecia Areata, Social Anxiety, general anxiety, and OCD. He has been physically sick on and off for the last year. He has gotten better but we still have so much work to do.
This drug stole my son’s childhood away and has broken my family. This kind of pain is unimaginable. We just want our family back to how it was.
Our 15 year old daughter was prescribed Montelukast. We were not aware of any side effects at the time. She had no real issues for the first year taking it. However, she did become more anxious a couple of months before her GCSEs which we thought was normal. But the anxiety grew and she felt awkward socially and started with insomnia and having suicidal thoughts. She started seeing CAMHS Psycologist but our daughter didn’t feel any sessions were helping. So we found a private one that does imagery which did help a bit. I started researching on the internet about side effects of her medication. The only medication that specified having neurological side effects was Montelukast. I also found the Facebook group of side effects of Montelukast roughly the same time. We asked her allergy consultant if she could come off it and it was agreed as our daughter is allergic to pollen. Three days after coming off Montelukast her anxiety went through the roof. Her suicidal thoughts escalated and she was constantly low. We took her to A&E hospital twice so that she could see a psychiatrist as the Psycologist and us felt things were getting out of hand. It took two more weeks to see a psychiatrist who prescribed her with a low dose SSRI. A year and a half later now 18 we are trying to reduce the SSRI to see if she can wean herself off it. We hope that she won’t be reliant on the antidepressant for life. We feel Montelukast made her final GCSE year more difficult and the first 6 months of A levels unbearable. We would like doctors to inform patients properly about the side effects as well as having regular appointments to check for side effects.
My son (4-6years old at the time) also sadly suffered horrific side effects from Singulair. They started gradually & because no one had warned us & there was no leaflet given it took a long time to put two & two together. My son suffered extreme anxiety daily, it took hours to get him to sleep then when he slept he would experience frightening hallucinations & nightmares that we couldn’t wake him from. He would have hour long extreme melt downs for very little reason, he would hit & hurt himself & say he should be dead. He would regularly talk about running in front of a bus & killing himself. There were many more less extreme side effects he experienced that I could add to the list. Finally through finding a support group I found the information I needed to piece things together. I found sadly hundreds upon (now thousands) of people sharing their very similar (often times identical) experience. Sure enough research showed that these are all documented possible side effects. I took my son back to the paediatrician who had prescribed the med along with the information I had found only to be met with a dismissive response unfortunately. It was thankfully our GP who helped us in regards to coming off the med. withdrawal was nothing but a nightmare for weeks & months. Things intensified before they slowly, slowly, slowly started to improve. It was constantly 1 step forward, 2 or 3 steps back for a long time. After maybe three years I started to feel like I had my boy back. There are still minor setbacks that happen occasionally usually triggered by something he eats or drinks. Most recently he had a major setback from an increase in dose of another medication he is on. No family, let alone a young child should have to unnecessarily go through this heartache & worse we shouldn’t have to be struggling through recovery without medical help because doctors choose to ignore & dismiss our concerns. I spoke to 3 of my sons specialist’s about the side effects my son was having & each of them dismissed it & were obviously uncomfortable about me bring the subject up (even though I had documents to back it up) Why is that? I have to say that I am so thankful to the support group that I found at the time. A group of people via social media that have been amazing at supporting now thousands going through the same thing. Their dedication to supporting, tirelessly researching, advocating & speaking out has been was has helped so many survive this nightmare.
It is great to see awareness of the side effects getting the attention needed. My 6 year old wanted to die because he felt he was no good. He couldn’t remember the alphabet, he had a swollen face, loss of appetite, loss of ability to concentrate, pins and needles down his spine , horrific night terrors, anxiety plus a few other symptoms. The specialists were puzzled as he took the tablets seasonally and they said no way could they be related to the symptoms. Psychologists, paediatricians, mri’s, allergy tests, blood works all negative. It took years to recover from. Still has attention issues and low self esteem but better than it was after a lot of work. Keep spreading the word.
My son had enough neuropsychiatric sode effects co-occuring that he met the criteria for autism whilenon singulair, and without intervention he no longer met the criteria after a month of the medication. He had “extreme OCD tendencies” only on the medication. He had violent night terrors. He was recommended to take a break from therapy, because it couldn’t benefit him at the time. My son almost died (other mothers sons did die). He had to be taken out of state to get treatment. We finally moved him across the country to avoid his symptoms after 3 years on singulair when it was determined he NEVER had asthma. He had a low immune system susceptible to pneumonia due to not developing a response to his infant pneumococcal vaccine. I remember the day my son tried to tell me he was feeling a feeling he had never felt before at 5 years old…it was happiness (about a week of singulair). When he stopped singulair he never hurt himself or others after that night. I watched my baby count his “good days” out loud. The doctors say he was an extreme case. His reaction is unlikely…but not impossible. Possible enough that he hid from the world trapped in his little body for 3 years, and he remembers it ALL.
My daughter went from being a happy child aged 16 to a child experiencing hallucinations, agitation, depression, suicidal ideation, suicidality, anxiety, loss of identity, aggression and extreme temper tantrums. She has had to leave school and was repeatedly admitted into psychiatric institutions after suicide attempts. Over the last 6 weeks she has come off and is gradually returning to normal.
It is hard to accept that this drug has no warnings in the UK and is so widely prescribed. I was unaware that a respiratory drug could cause such horrendous side effects. Multiple doctors have failed to spot or ignored her worsening neuropsychiatric side effects and there is almost a collusion with the drug company.
Our son was placed on this drug at 18 months old for constant night time cough and multiple emergency department visits due to shortness of breath. He experienced aggression, horrible biting, night time waking, bed wetting amongst other side effects. as he got older (4 years old) he was able to describe horrible dreams he’d been having, a man that he said was real with a white face that would watch him at night (hallucination), his aggression increased when he started school and experienced some bullying leading to a negative school experience. This is when we finally put the pieces together and decided that the benefits no longer over ruled the risk and stopped the medication. Our son just turned 5 and has been off Singulair now for 6 months. after the first month I heard him giggle and realized we hadn’t heard that beautiful laugh in such a long time and knew we made the right decision.
My daughter experienced horrible nightmares for months screaming no,no,no 3-4 times a night. I finally started researching as that was the only medication she took and found others with the same. I immediately took her off of it, who would ever think you couldn’t discontinue an allergy medicine cold turkey. That was the beginning of our nightmare. Within days of stopping she was so sad, anxious. She would tell me she couldn’t leave the house. She would cry and tell me she didn’t know what was wrong with her! Her case was mild compared to many but as a mom when your 7 year old can’t leave the house and is scared of everything it’s heartbreaking and you feel like someone robbed your child and you from happiness. If not taken off the market at least people should be made aware of the possible things to look for so the proper precautions can be taken! It’s not worth one life let alone the many it’s taken!
Our son had only 2 doses of montelukast recently, after the second dose he got aggressive and so angry he would head butt the wall and it wouldn’t phase him at all, he was having suicidal thoughts and still 2 weeks later still tells us he hate his life and doesn’t want to be here, he had vivid nightmare which he believed were real and would see thing (hallucinations) and wouldn’t go back to sleep our sensitive, caring thoughtful 6 year old has been tainted by this stuff, this stuff should not be on the shelves.
7 years ago I decided to go off of Singulair (at age 40). I had been on it for about 1.5 years for my asthma/allergies.While on it I was also being treated for depression and was taking Wellbutrin. About a week after I stopped taking Singulair my husband surprised me with a vacation. While there I totally fell apart! I became anxious and couldn’t stop sobbing. I could barely leave my hotel room. I lost my appetite and had a terrible headache. It took me about 6 days to START to feel better. Recently my son’s allergiest recommended he go on Singulair to which I said, “Absolutely not!” She seemed surprised that I was so against him taking it and when I explained why she did admit that some people who are predisposed to anxiety/depression could experience adverse effects.
My son David was on this drug for two years from the age of two. At age 4 he was an emotional wreck. He couldn’t stand music or loud noises. The slightest thing could trip him into a mega tantrum. We’d asked gps for help and he was being assessed for his aggressive behaviour at nursery when, by chance, we came across a Facebook group talking about the side effects. We went through the list and were horrified. We weaned him off over a couple of weeks. The first month’s was pretty bad with some awful tantrums (worse than “normal”) but there were occasions when he was better. He started wetting the bed. Gradually the good days got better and the bad times didn’t last quite do long. Nine months after stopping he was so much happier. Nearly back to himself. He continued wetting the bed regularly for another three years. There are very occasional times when he gets upset now, but he gluten and dairy free and this helps a lot. Of our four kids (David is a twin and has two older siblings) he is the one who gets depressed the most, but usually if he’s eaten something he shouldn’t have.
My son had severe anxiety and insomnia on montelukast. We were not warned by any of his doctors about side effects. It took me two years to make the link. Warning labels are urgently required to stop other children suffering like my son did.
Our then 2 year old son had a series of night terrors while on Singulair. As a premie, this was standard prescription. The risks were never described to us and had we had more information, we would not have used Singulair.
I was placed on Singulair for TEN years! Soon after starting, I began feeling severe irritability and anger. I began to daydream uncontrollably. At first, as I was in my forties, the doctors thought it was the onset of menopause. They put me on birth control pills, as my PMS weeks were horrible with wild emotional swings. It was PMS on steroids! The hormone treatments stopped the wild swings, but did nothing for the daydreaming. Then they put me on Abilify to treat “maladaptive daydreaming.” It helped, but I started having heart arrhythmias. Finally, I started reading up on Singulair and could check off many of the neurological symptoms that started within days of taking it. I’m angry that no one warned me of these side effects and now that I’ve been off of both Abilify and Singulair since November and January 2019 respectively, I’m discovering the damage Singulair did.
My emotions are dampened. Daydreaming is much less but so is my focus, creativity, and general cognitive function. I now have several autoimmune disorders, resulting in dry eyes/ dry mouth (Sjogren’s Syndrome) and apparently rheumatoid arthritis. I have times of muscle and joint pain and fatigue. I’m hoping some of this will clear up as more time passes, especially my cognitive function. But after TEN years of a neurologically and possibly physiologically damaging drug at my age, I may never fully recover. People must be warned about this and other similar drugs!
I’m so glad I stumbled across this site!! I was looking up reasons for why my eyes have suddenly gotten very red and my vision very blurry. I’m also going to a neurologist for a battery of testing for MS, Lupus, Rheumatoid Arthritis, etc. When I first started taking Montelukast I had horrible violent dreams, I developed horrible road rage, I was so angry all the time and cussing all the time (which I never do). I quit taking it after 2 weeks. I talked to the pharmacist and my PCP and they both said that the drug was very safe, had relatively no side effects and that it was very important that I keep taking it. I started taking it again a few months ago. Then I started having the red blurry eyes, problems with my knees, I became extremely tired all the time, my cognitive function decreased tremendously, etc. After finding this page last night I realized that all of these symptoms started after I started taking the drug again. I just went to the eye doctor yesterday and was diagnosed with extremely dry eyes, cataracts, etc and they ordered 2 pairs of glasses for me. I had to pay $825.00 out of pocket. Now, I have to go back and try to explain to her that I need my eyes checked all over again because I think the prescription is going to be wrong as even though my eyes are still red right now, the bluriness is somewhat better. I’m probably going to have to pay out of pocket all over again OMG.
Years ago my son was put on singulair for allergy induced asthma. The doctor had tried several inhalers and allergy meds before putting him on this. It was a fairly new drug st the time. Doc said little to no side affects. I’m very anxious and skeptical of medications to begin with let alone new medications (from my own past experiences). We agreed to try it. My sweet, happy, goofy little boy turned into the devil child within days! It was aweful! He was too young to tell me how he felt in the inside but it was very clear to us how it was affecting him mentally. Such anger, tantrums, yelling, etc. it was a jeckle and Hyde experience! I immediately took him off the medication.
My sister in-law was not so lucky with her son. He was on it longer and had horrible thoughts, thoughts of harming himself and others . He ended up having to be put in a hospital for a while. Heartbreaking for his parents and the rest of the family.
This drug is nasty and should be taken off the market and the maker should be sued! Retribution should be given to those families that were affected – families like my Sister in-law. This experience has forever changed her son.
3 months after having my baby I broke out in a terrible case of hives – it happened every single day for weeks. I was told to start taking Montolukast every night. Hives got much better but I randomly developed what I thought was postpartum depression. Long story short, now (a year later) – I recently went on a trip and forgot the pills. No pills, no hives, and immediately felt mentally better. I realized the Montolukast was making me depressed so I decided to research and found all of these great comments. So the scary side effects I am feeling….extremely tired, headache, and tingles in my face!!!!!! I am hoping this is just part of withdrawal. Has anyone else had these tingly face feelings as a result of abruptly stopping?
The doctor prescribed to my two years old child so after 43 days perceived involuntary movements legs and neck several times while he is awake. Thank you for alerting us. This medicine should be extinguished.
My beautiful happy amazing 9 year old son has only been on this drug for 3 months and the difference in him already. About a month ago i started to notice he was getting cross quickly, crying over little things and had a real aversion to noise, especially other children making noise. It would tip him over the edge big time. I would watch him and think where the heck is this coming from. It got worse around the same time as going back to school after summer holidays. Because he is dyslexic i assumed he was struggling with learning. The teachers would tell me he is crying in class up to 3 times a day – he would cry about everything before & after school. I kept him off school all week and things blew up at school when i said i was keeping him home until he got the support he needed in class. Head Teacher was not impressed and its gotten a little ugly for me now. Then last night it twigged about his meds. He is on the tablet and inhaler which has similar side effects. He has always had separation anxiety but finally joined after school clubs and we were making progress. Fast forward to this week …. he wont leave my side, even while washing up he will cling to me. Goes from beimg really hyper crazy (which is how he woukd behave when over tired) to with a flick of a switch he will be very sad, withdrawn, curl up in a ball and just lay there. He doesnt understand why he behaves like this. Says he is sad all the time, angry, but doesnt know why. But now we do. What makes it worse is he was prescribed them even with anxiety which should never have happened in the first place!! He is tired out constantly and gets irritated very easily and at times has a short attention span. He is certainly not himself and my heart is broken. I am seeing his GP tomorrow. I had thought that after a couple of days the side effects would go – please, please, please make them go.
To all of you out there going through this and much much more – my heart goes out to you, and my support and love is with you. Xx
Thank you so much for this article. I’m an adult taking montelucast. I have started to have most of the mental symptoms you have described. Confusion, disorientation and anxiety became so intense that I have started looking for the causes. I was suspecting that it might be it as it does mention that it might affect your dreams. If it affects your dreams than it for sure must affect your brain. My search has led me to this article. I hope it’s not to late.
I to am an adult taking this prescription. I’ve been for over a yr. I was NEVER told to take this at night and it’s not on my prescription lable. So I take it around 8-8:30 am with my other meds. Out of curiosity I looked this one up. I’m completely BLOWN AWAY right now reading all these stories. Now I understand why I feel the way I do after a bit of taking it. I get irritated easily, that can lead me to be MEAN, than emotional, I too can cry easily, I have SEVER memory loss, from things that happened a day ago or whenever. I get so upset with myself when people use the word ‘Remember’ because it’s just a complete blank. Sometimes I’m sharp but for the most part others wonder why I’m like this. I want to sleep in the afternoon and can sleep for hours. My personal life is a JOKE. I can’t plan anything because of above feelings and or I’m just to depressed to care. This morning I took this stupid pill but now I’ll understand why I feel these symptoms. I was prescribed this for allergies. When ida been better off just taking a Benadryl. I don’t understand why we are not informed the RISK by the Dr we’re SUPPOSED to be able to TRUST.
Thank you to everyone for writing your stories. I am confident enough in myself still that I look forward to knowing hopefully I will be able to get back to who I was before taking this. I hope my story will benefit someone as all yours have me.I
Sincerely Bonnie ❤
I’ve been taking singulair since June 2019 and thanks to this site have stopped taking it today, just hoping my side effects from taking it will go away. Over the summer I started having horrible pain in my calves at bed time. Then, I began having symptoms of restless leg syndrome (buzzing in legs and uncontrollable urge to move them). I sometimes start itching like crazy when I lay down and I feel like I’m going to loose my mind because I’m so tired but can’t sleep because of these symptoms (or when I finally do fall asleep they wake me back up). I’m grateful to have found this web site so I can be off this awful medication and hopefully return to feeling normal.
Watching this video bought tears to my eyes. Nobody, especially a child, should ever have to go through something like this! I am a 77 y/o male who has suffered from asthma since age 5, and also suffered with depression since childhood. In those early years, clinical depression was not diagnosed as such, and doctors simply called it a “nervous breakdown”. There were almost no remedies for asthma attacks, and doctors simply injected me with adrenaline. As I grew older, I started using Epinefrin, then various other drugs that were definitely mood changers. My friends did not want to be around me when I took those! I suffered several severe depressive episodes in high school and university, and no one took notice. I finally had one in my fifties that almost ended my life, and I was finally put on Welbutrin. That was over 20 years and my depression was under control, until I started taking Montelukast about a year ago. The adverse symptoms began gradually until a few months ago when I started getting more frequent depressive episodes. My GP told me to stop taking Montelukast which I did a few days ago. Although it is still too soon to feel the effects, I am hoping this will do the trick. I suspect Montelukast affects adults as well as children, and I am so grateful to the Marotta family, especially Nicolas, for making us aware of the dangers! Sorry for the long winded comment!
Our 15 year old has been experiencing severe anxiety, insomnia and psychiatric symptoms ever since she started taking Singulair 2.5 years ago. We took her off the medication as soon as we realized what was happening, but the symptoms continued even after stopping the medication. We are angry that we were never told about the risks, and fear that she will never recover and return to the happy, healthy child she once was.
My son, Eli is 8 years old. He was prescribed Singulair at around 4 years old for allergy induced asthma/reactive airway disease. We live in the Central Valley of California and it is common for kids to have several respiratory issues due to the poor air quality. He had been seeing his PCP since birth and she is someone that I absolutely trusted with his care. When she prescribed this medication, there were no discussions about possible side effects. It wasn’t until 4 years later, after having him take the meds regularly, that my boyfriend was prescribed the same drug for his adult-onset allergies. He told me that they could cause him to be suicidal or have depression. That’s when the alarms went off. For four years, my sweet son suffered. It started with his listlessness. He would go from being excited and happy, to complete silence and withdrawal from conversation. I would beg him to tell me what was wrong and to talk to me. This transitioned into severe aggression. Hitting, cursing, yelling. Then came the comments about suicide and self loathing. The self-harm by way of hitting, pulling his own hair, etc. I decided to have him start seeing a psychologist. I was adamant about not wanting him on medication yet for depression. As an adult who has taken anti-depressants, I know what it can be like. His therapist is wonderful and I think the only thing that has saved him from his symptoms worsening. He’s never taking this drug again. I am a wreck because I feel like I caused this. I never suspected that his allergy medicine was what could be causing all of this. I was never given any warning by anyone and even when I went to his PCP about his mental health, looking for guidance to counseling, she said nothing. She never related the two. To me, that’s negligence. It can’t be ignored. I only hope that his issues aren’t permanent. It’s a scary feeling to have, but at least I know now that we aren’t alone and that we can try to stop it.
I just want to thank you! We also have a son Nicolas who is 11 yrs of age and suffers severe sinusitis since a very young age. Today he was prescribed this medication and tonight he had his first and last ever dose!! I did say to the Dr that I was looking into seeing a nutritionist and naturopath to see if they both could help him and he lectured me on their lack of study at university compared to himself and to trust him as he prescribed this medication. I demanded a blood test for my son as he does have auto immune problems and with those results I will be heading to those that can help him the natural way. Thank you all again your voices and stories have saved my son. Regards all the way from Australia
I was prescribed this by my doctor, but didn’t take it, and every time I return with the same symptoms because I want to fix what is wrong with me NOT take random awful drugs for the symptoms, he berates me for not taking it like I’m the douchebag. And now I read this. -_-
Doctors are poison-pushing scum and healthcare is broken.
I have taken this drug off and on, over a few ears. maybe 7, no insurance so in some cases would forget to renew or couldn’t afford, it I thought I had no symptomes, and attributed some of things in life to bad job, bad living situation, etc. 7 years ago was depressed, son a teen treating me bad, got a bad flu and had a huge panic attack, and got anxiety and couldn’t sleep. can’t remember if I was on or off the drung. I never really noticed any symtoms on, but 7 years later, after feeling better and asthma better i moved to a county that was not great for asthma. so went back on motelukast, I can’t tell you how long off, again money and only clinic doctors. It seemd to help but not as well in this county, but again, bad job, bad living situation, my lady I rent from is hard to deal with, got a huge panic attack again, anxiety shaking ever sinse and insomonia again but not as bad as before. Anxiety high with virus shut down and forgot to take pills on a regular basis but now been taking every night, to help my lungs. not really working. but afraid of the virus as well?? so regular for about a month with shut down? it’s depressing anyway, but last few days very sad, and I keep having negative bad thoughs for quite awhile, again lock down, virus? I have no car lost with low paid temp job. So never prescribed until an adult. QUESTIONS: is this more in children? or adults suffer too? I have looked for bad side affects for this drug but never seen anything until I looked up if I take at Night will be hard to sleep and found this Can I withdraw from this? AT 65 years old in a now virus world I worry about evrything. 7 years ago I was able to get out of the panic attacks and anxiety and sleep issues, when I finally moved my son and I out of the house renting rooms back then it was better, slept pretty good. Just wish I could remember if on it or off it then? but in any case i have been off for months at a time and no really bad symtoms unless it was the times of the panick attack but so many other factors.
so what do we do for asthma then? I have enviromental allergies and asthma from an over active thyroid untreated for too long, racing heart, and my lungs never the same. I have been off and on this drug but not on a regular basis due to no insurance no regualor doctors and moving due to job changes, so thank goodness for that, but now been back on for about a month or more and doesn’t help my lungs anyway, I may nowe believe my panic attacks and anxiety could be related but not sure 7 years ago and now last December. I’d like to just get off it now, 10mg, but need to wean. but what do you do for asthma then, as it did seem to help. I do need to move back t Orange County, healthier but Southern Calif is plagued with heavy particulate weather, no good. I have seen some food and natural healing. I had searched in the past for side affects never saw anything, read the pamphlets as i have tons of allergies some sent me to the hospital, latex, ibuprofen some foods. I hope I see responses, as I am alone in lock down and panic and axiety is here due to virus and job loss, don’t want to add to it with wearning but only been back on for a wee bit so maybe a good time to do so. unfortunatley no doctors.
I may start allergy shots. For me it sounds a better alternative than long term medication of any kind. Started Montelukast last year for sinus pain. It seemed to take the edge off. I have year round allergies with little relief of standard allergy medications.
However, for over a month now I’ve had a low grade fever and mild wheezing. Tested for COVID which was negative. Chest x-ray and a few lab panels all negative. In searching for possible reasons for long term low grade I found it may be an adverse effect with Montelukast. Stopped taking last week and fever is going down. May be a coincidence, but I doubt any physician will or can assist me in making it conclusive. In process of testing for COVID antibody.
Horribly vivid nightmares since stopping Montelukast so starting researching and found this blog. I would rather ride these withdraws out then ever start taking the med again. They’ve got to end at some point and I would rather try to manage these knowing there is a better chance of there being an end to all of this than to be subject to adverse affects and possible worse withdraws later.
I’m looking into allergy shots. It may take months or years to get relief, but I would rather manage that. I have my inhaler for acute attacks if needed. For me, this seems safer. Netty pot, lots of water, antihistamine and anti-inflammatory foods and occasional acute sinus meds will be my new norm.
I’m going through the same thing, can you please tell me how it’s working for you?
I quit taking the singular. Cannot sleep. When I do its night mares tossing and turning. I am so depressed for no reason. It never stopped my asthma attacks. They aren’t any worse after quitting.
My mum 84yrs old was taking Mintelukast last year for about 6 months. She finished her treatment (mild rhinitis) last March. But after a few months that she started with the medication she started to had hallucinations. The doctor said that is not the montelukast side effect that is her age (dementia senil) but her mind still bright and remember everything from today yesterday, tomorrow etc.. and her conversations are 100% normal.
My question is how can I see any improvement if she took her last tablet of montelukast about 9 March 2020
My son had been on Montelukast 4mg for at least three years. There is a known family history of psychiatric issues. His pediatrician and asthma specialist was well aware of the family history and I had asked several times if his asthma medicine was part of his current issues. He has had rage tantrums, night sweats, nose bleeds that flow like rivers, bruises easy, separation anxiety, refuses to go asleep alone or even during the day, he had night sweats, irritability, nightmares, sleep talking/walking, bad breath even though he brushes twice a day, concentration issues, hyperactivity, and more. He has experienced ODD, combined ADHD, and anxiety symptoms. We tried a stimulant medication for ADHD and stopped very quickly due to it exaggerating the anger issues to a predictable two hour rage tantrum about three hours in. After tirelessly researching about the new ADHD diagnosis I remembered I had seen this on Facebook two years ago and dismissed it quickly after the doctor brushed off my concerns.
About three weeks ago we took him off the Montelukast. I was scared due to the fear of his asthma symptoms coming back. They have not and possibly even improved since. It makes me wonder if he had asthma in the first place. I feel like a terrible parent thinking I might have overlooked all this putting my trust in the medical system. I would be pleasantly surprised if this was all because of the medicine.
Being true to myself though I have only tried to be the best dad as I can and help him as much as I can. Possibly the doctors have failed us, or the drug company hid information only time will tell. As of now his symptoms have improved! Its only been a few weeks. Concernedly the third night of not taking the medicine he went to the bathroom and begged and pleaded for his asthma medicine like if it where an opiate and he needed his fix. He has not been as irritable. I have tested going into different rooms and leaving him alone. It is taking longer for him to worry about me not being there. His breath has not been smelling. The best thing is that he seems to becoming more present when I am talking with him. There are still symptoms present although the timeline is still unknown or questionable. I have had a heck of a time trying to find information on this issue. I will update this as time goes on and share what has improved or has not. I defiantly feel like I have a duty to help as well if this were the root cause of his issues.
Can anyone tell me what they are doing to help heal their children of the long term side effects? I think we can all agree that there are some. I am trying to help my son who has taken this since kindergarten and we are just now connecting dots to this medication now at age 8, 3rd grade. His school work and motivation is suffering. His last pill was in August when we finally realized what it was doing because he now could tell us what he was going through. It’s been 2 months off and we are noticing tics and hyperness along with other behaviors like bedwetting hes never not had a dry night and I now feel like singulair is to blame. All the other side effects nose bleeds, hallucinations, nite terrors etc. Seem to have gone away. I hope for good. I am trying to eliminate as much sugar out of his diet and add more protein. I’ve added a great multivitamin with omega. I am trying to keep him active and in the right track. School is still very much a hassle. Have any of you thought about finding another pediatrician?? Our dismissed our worries and I’m not sure I want to continue the relationship. Thanks for any input.
Hi, my daughter was prescribed this drug in 2009 at age 3 and suddenly taken off it mid 2019, age 14
10 years of her child development under this drug, I though i had a difficult child.
The ped took her off it and prescribed another asthma preventative as Singular was no longer working. Then it started, but like diesel train, slow to start then very powerful and fast! Its been 17 months!!
Not wanting to go to school
scared of people and social interaction
More intense anxiety
More intense sleepless nights
NO appetite, embarrassed to eat
More aggression of her everyday responses (strange outbursts)
NO empathy whatsoever
Delusional and not communicating effectively
Then the psychotic violent episodes where we had to restrain her physically for 10-15 mins. I thought i had to call the police!!
Reached out for help to my GP and he referred to a psychologist.
Alerted my Ped who hasnt said anything
No GP or medical associates has mentioned side effects of this drug
Parent now researching this drug,
how long will the side effects last?
Has it had any permanent damage to her?
Will she ever be a “normal child” She was 3 years old
It hasn’t been researched enough??
I have been taking Montelukast for approximately 1 year. I stopped this medication yesterday after learning about the black box warning no one told me about. I suffer from anxiety to begin with but over the last year my symptoms have gotten worse. I thought I was headed for a mental break down until I learned about the warnings. I have had memory loss, confusion, depression, joint and back pain, I’ve developed eczema on my scalp (which my doctor wasn’t sure why), itching, hives. I would go to bed and night and think if I didn’t wake up it would be ok because I’m tired of feeling like crap every day. Just knowing that all this is probable side effects of the medicine have given me great relief that I’m not crazy. I’m hoping that all these symptoms will start to disappear now that I’ve stopped this medication.
Keep us posted on whether the problems clear up
Wow doctors can be so stupid sometimes. Sorry if that offends anyone but it’s true. How can they say that just because it’s out of your system it no longer has effects? Then I guess all these crack heads running around would be back to their normal selves. I used to have a best friend who gave into crack and he really changed, even though he would get clean for a few months, he was never the same again. Maybe Montelukast is just as bad. Personally, I was wary after reading on the label that it could cause fear. I’m like super scared of the dark and was prescribed to take it at night but thankfully it did not affect me in that way. For me, it’s just not working as well as it used to. At first it worked like a charm, I was able to sleep 8 full hours but now I wake up every morning around 3 or 4 AM wheezing and I have to use the nebulizer. I really wish it would work again.
I started taking Montelukast a year and an half ago for allergies, after a year i asked my doctor that I was feeling better and that If i could stop taking it, she said, “this pill wont harm you is safe, i recommended taking it for life” , I am 32 years old taking a pill for life seems like to much … I saw a documentary about how doctors get commission for prescribing pills , you can check here openpaymentsdata.cms.gov and creeped me out so i decided to stop taking the pill ,I was suddenly experiencing pain in my joints and muscles, malaise and very tired… my pain was severe i couldnt even sleep confortable , i felt my brain was not thinking right, my brain was foggy, i felt confuse , very hard to concentrate, one night i woke up having tremors, next day i had a tick on my eye that wont leave me…..i wasn’t my self at all…after 2 weeks everything was fine also i started repeating my self “i am so happy” constantly, i was feeling a weird sense of happiness … nothing really change in my life everything was the same in general…. i am feeling much better !
I have been prescribed montelukast for my asthma. And the Doctors always get onto me for not taking it daily. I always took it when my asthma flares up. But little by little, I’ve noticed I’ve had some anxiety issues. Never did I think it was the pill. When I went for my check ups I always found it odd my Doctor would give me a chart. The chart was, are your depressed 1-5 5 being the highest. Are you anxious 1-5 etc etc. Being December asthma peeps go through all sorts of dilemmas. So daily I take my medicine. But recently I have had overwhelming anxiety, stress, hyperventilating at night. I’m anxious and nervous. Always that thought am I going to have a heart attack? September i thought I was having a heart attack after 2 trips to the ER. 1 heart monitor 1 specialist i have a healthy heart. I asked the doc what is it then? Stress and anxiety? Yes….. well hell. Stopped with the Montelukast. Unknowingly anxiety and stress stopped for October and November. Thought I had kicked it. December as I said earlier came allergies with started my regiment. And now last 2 weeks been utter hell. Anxiety, stress, difficulty breathing. Constantly checking my pulse worry the end is near only to find others with the same symptoms. Thankful for this blog. Dr. Is going to get a piece of my mind. Will update soon. 12-25-21
I don’t think that I can thank you enough for creating this blog!!!!
I have been taking Montelukast for at least two years. My anxiety and my sleep (none of which I had before) have been a mess! My spouse and I have had to sleep in separate rooms because of my talking, thrashing, moaning, hallucinations, and wandering. I blamed it on Ambien and stopped taking it. My doc gave me another med for my anxiety, which would not have been there but for the montelukast!
My intention is to stop taking this today. Keep a good thought, please.
It looks like this is harder to discontinue for kids than for adults. That makes sense to me, their brains are still developing. My brain, (age 64 and married for almost 30 years) might be full- even though the neurons are still firing…sometimes 😉
Please tell Nicholas that I like his work boots and that he is a brave young man that is helping SO MANY! To his Mom and family: Bless You for turning this into a positive experience/outcome. Nicholas is SO LUCKY!!! And so are we!
I will report back about the withdrawal. (01/15/2022)
Wow. Thank you so much for the wealth of great information. I’m going to save this page so I can refer back to it. You’ve done a massive amount of research on the topic based on your information. I’m sorry to hear about you’re son and hope he’s doing better and finding a solution. Ive gotten lucky so far and have not had any neurological effects.
Thanks again. Take care.
I was prescribed Montelukast in 2020 for seasonal allergies. My Dr’s only warning was “if you start feeling like you’re having a bad life” stop taking the meds. I really didn’t think much of it. I was recently widowed at the time and was already having a pretty “bad life”. My seasonal allergies subsided and I continued taking well into 2021 but then I started having terrible suicidal thoughts, crying all the time, thinking about driving my truck off the road. Not enjoying life and completely isolating myself from the world which was easy to do because of Covid. Until one day I was driving home from picking up groceries and I just could not handle being alive, then it suddenly dawned on me the one and only thing my Dr said and a lightbulb went off. I never took another pill and destroyed all the ones I had left. It has been over a year now since I took my last dose of Montelukast and although I’m not having suicidal thoughts any longer I still don’t feel like myself. Has anyone else experienced these side effects long term?
My son who is 5 just started this medication a month ago I was hesitant from reading the side effects etc… the first night he took it was awful he was up most the night crying/hallucinating. Then every night since has been fine his asthma issues have improved. So last night my husband forgot to give him his meds and he was up all night screaming and crying I didn’t think anything at first then again tonight I was out and my husband has bedtime duty and I reminded him to give my son his meds tonight and of course he forgot so an hour ago my son wakes screaming I go in his in mumbling I can’t make any sense of what he is trying to say he won’t stop crying he’s angry and sweaty and it dawned on me that this was from not having the medication …. I got him to take it ans started googling and found this page and now I’m a mess I don’t want to keep giving it to him if it’s causing all these serious issues but what do I do? It helps and I know his ped will act like I’m just being a worrier and will tell me he needs it. Help!
This is the latest reply , being 2022. Do not take this drug. I was given a box of 28 x 10 mg pills , 1 to be taken before bed . I’m a grown man But didn’t question the chest nurse who prescribed these pills for copd/ asthma maybe ? Seen her twice and no absolute diagnosis ?. Anyway , a week into these toxic pills and I’m stopping ! The headaches, the agg, the anxiety , nightmares, I’m stopping , hope my body returns to normal as I’ve only too a week’s worth. Buckle up , looks like I might be I got a tough ride , 7 days ! Toxic , poorly trained prescribing nurse . Don’t touch !
How did you wean off Montelukast? Looking for advice from anyone? Also how long does the withdrawal last? Thank you.
My 16 year old was prescribed this when he was 5/ 6 (in around 2010) to help ease a cough at night. He has asthma for which he takes the appropriate inhalers and this tablet has helped with what it was given to do. My 7 year old also takes it for the same reason and it helps him too. Today a friend told me about the side effects her daughter experienced starting this and so she stopped giving it to her. I am now really worried about the effects this might have on both my sons? My youngest seems okay and doesn’t suffer any side effects, maybe only bad dreams now and then, but couldn’t that be age related? We’ve not noticed anything worrying before now in either boys. After reading this, I’m linking behaviours in my older son, for example some anxiety and mood swings, his hands shake slightly and he rocks his feet constantly. Now I want to take them both off of it, what do I do?
Take them off it if they are okay?
I wouldn’t say my sons symptoms (if related) are severe. Neither boys seem mentally affected, will they suffer more not taking it? Neither of them have asthma attacks, but they are both extremely weezy and suffer from typical asthma and allergy symptoms. I’m so annoyed and scared that I let them take it without looking into it but also I’m worried I’m being paranoid in comparison to everybody above and about the medical profession since COVID came along and made me start to research and question everything we’re taught and told? Why didn’t I research this before! Help, help, help.
My son is 10-years old. We just moved across the country after living in once town for most of his life. It has been a hard adjustment for both of us. My son’s mental health seems to be worsening and, at first, I just chocked it up to all these big changes and prepubescence. Something told me to look up the side effects of Montelukast. He’s been taking this for allergies for 5 to 6 years. I asked his previous pediatrician if it was safe for him to take long-term and also if he only had seasonal allergies and no asthma, wheezing, etc. His doctor assured me it was safe. I have noticed problems with his behavior for a long time now. Being a single parent is tough and all I want is for my only child to be happy and healthy. Something told me to look up the long-term side effects of this medication. I was shocked and concerned. I have scheduled an appointment in our new town with a new pediatrician. Thank you for sharing your story and bringing more light and clarity to the concerns surrounding this medication.
I am completely shocked to find out that even nowadays this issue is not solved. The post-marketing studies should be mandatory.
I found on the FDA’s website a letter dated 2022 calling for well-designed studies specifically targeting neuropsychiatric side effects, to understand how Montelukast affects the brain.
I am 55yrs old and have Secondary Addison’s Disease. I am just learning of it. I have severe allergies & COPD, as peripheral illnesses of Addison’s (Adrenal Gland Insufficiency). I was prescribed Montelukast probably 6 months ago. I recognize some of the symptoms(depression, weakness) in myself. I blamed it on Addison’s, as I do everything. American doctors claim this is a new disease, which has many unknown peripheral illnesses. Because I take a handful of pills each morning & night, I developed liver damage(NALD), and had to start metering my medications. I was forced to look up all of my medications in order to know which ones I can meter, which ones I can quit taking, and which ones I can reduce the doseage. Some medications, I will be on for life. Some of my medications are for comfort ( i.e. Omeprozole – to control indigestion). Anyway, I stumbled across this discussion group, decided to share. Some of my many symptoms are due to the Cure rather than the illness. I mentioned this site to my primary physician, now that it’s mentioned on the FDA website. Maybe she will research it and warn her patients. I need to discontinue taking Montelukast. Any suggestions on safely discontinuing it would be appreciated. As my plans are to quit cold turkey as of now.
Just like the Atrial Septal Defect, it takes a lot of convincing to make something believable.
Sometimes many deaths occur before the medical society holds something as truth. In medical school, we watched a movie about the many adversities of a young surgeon correctly diagnosing & surgically correcting a baby born with an Atrial Septal Defect(whole in the heart)(aka. Blue Baby). The surgery took place at Johns Hopkins University.
Hey! I’ve been on Montelukast for 15 years. I was diagnosed with a panic disorder about 14 years ago. I didn’t think my asthma medicine could have an impact on my mental health but after researching it I had all the signs a lot of others had while taking this medication. I quite cold turkey a week and a half ago and I feel so nervous. I’ve been having intense dreams, higher blood pressure than normal, fatigue, depression, loss of confidence, random anxious moments and feeling extremely helpless. I’m just wondering when will I feel normal again? Are these withdrawal symptoms? If so, has anybody else experienced these? Will it ever go away?
I’m typing this comment and I should be getting dressed for work, but I can’t.
I was on this med for over 10 years and it’s ruined my life.
But I’m just realizing it.
36 year old black female.
I was so happy. So full of life.
Now, I’m depressed, sick, angry.
I’m experiencing all of the side effects. I don’t know what to do,
I stopped the meds 2 months ago and now getting out of bed is s chore to me.
This medicine ruined my daughter’s first part of her life and she is still dealing with many physical and mental effects from this drug. It is sad to see that this drug is still out there.
Thanks for sharing informative article.
Thank you for for sharing your son story. Thanks to you, we realized how dangerous this drug is. My 10-year-old son has been taking this medicine for a week (only 7 tablets) and we can already see that something bad is happening to him. He starts crying, says he is of little worth, that he is a poor in school, talks about declining values, etc.
My son is a sensitive boy and this drug seems to highlight his fears, weaknesses, etc. It has never been like this before, i.e. his behavior. My wife went to school today and the teacher says that he is a student who has no problems with education that he is normal like most of kids.
In addition, we noted his irritability, nervousness when we ask something, etc. Within a week, the son had 2 episodes of breakdown and crying – it was strange and never like this before. It’s scary, so we’re stopping the drug.