Last week’s post on Montelukast Withdrawal Syndrome has attracted comments at a higher rate than any prior post in 7 years of RxISK posts.
It followed a post on Asthma causing Suicide and Homicide two weeks previously, which had links to the QuarterWatch 2015 report of adverse events in children fingering montelukast and suicidality as the second most common pediatric adverse event received by FDA.
It also in my case followed an intriguing consult some years ago from a young man who had been arrested and was likely to be charged in a case that would have ruined his life, which put me onto the QuarterWatch material and the growing online concerns about montelukast especially given to children.
This individual was hoping a drug he was on might explain what had happened – it didn’t. But the montelukast he was also on, but hadn’t fingered as a possible cause – who would think an asthma drug could cause behavioural changes, did explain what happened.
The extraordinary rate of and quality of the comments on last week’s post is worth noting. It would be great to be able to say “celebrate” as with the post about the European Medicines’ Agency and Post SSRI Sexual Dysfunction the previous week, but in the light of the lessons that seem to fall out of this scenario, celebration is not the right word.
The lessons are common to the problems that happen on fluoroquinolones (See Here), mefloquine, isotretinoin, finasteride, pretty well all antipsychotics, all serotonin reuptake inhibitors, dopamine agonists, as well as montelukast and related drugs.
Lessons
- Montelukast (last week) and PSSD (the week before) make it clear that withdrawal syndromes can last for months, years and maybe even longer.
- Based on opioids and alcohol lasting 2-3 weeks, industry have sold doctors a story that withdrawal lasts 2-3 weeks – is transient. And of course all of these drugs are mild in comparison to opioids. This is completely and utterly wrong. Getting off SSRIs or montelukast can be a lot more difficult that getting off opioids.
- In some cases the enduring aftereffects from these drugs may stem from irreparable damage as when fluoroquinolones rupture a tendon. In others the effects like PSSD or tardive dyskinesia may be better termed legacy effects rather than withdrawal but whatever they are called it is clear that effects can endure indefinitely.
- There is no doctor anywhere who has any training in how to handle the toxicities from montelukast, fluoroquinolones, mefloquine or most psychotropics.
- There is no evidence base for managing the toxicities both on and withdrawing from these drugs.
- Psychiatrists will gladly pump you or your child full of antidepressants, sedatives or antipsychotics – as several of the comments on last week’s post make clear – but there is no evidence that any of these drugs will help the anxiety or suicidality or behavioural changes that stem from montelukast or fluoroquinolones.
- The psychiatrists will simply not see the prior montelukast, fluoroquinolone, mefloquine, isotretinoin or finasteride event.
- There is no evidence base even for managing the toxicities linked to SSRIs or stemming from withdrawal from then. If some part of your physiology becomes unstable on these drugs it will often be impossible to put it right.
- In some cases pharmaceutical companies know what to do but can’t be seen to tell doctors – as when they quietly told doctors in the early 1990s to co-prescribe benzodiazepines with SSRIs while at the same time they were funding campaigns to paint the benzodiazepines as more dangerous than opioids.
- As a result people are being killed by doctors, mostly psychiatrists, putting them on drugs they typically use for patients who are anxious, suicidal or emotionally labile but which will only make many of these problems worse.
- If you’ve been damaged by Montelukast, or a fluoroquinolone or mefloquine, or even an SSRI, you want to get the doctor to produce the evidence that what s/he is proposing to do is going to help – its not enough for him to say this is what we give to people who are labile or suicidal, s/he needs to show you the evidence that whatever s/he is proposing has been shown to work when the damage has been caused by montelukast etc.
- In the case of children none of these drugs work even when the anxiety or suicidality is not caused by a prior drug.
- If any doctor ever does show you evidence that SSRIs or whatever work to put the problems caused by montelukast or fluoroquinolones or mefloquine right – either the toxicity on treatment or stemming from withdrawal, please post it here. There are thousands of people who would love to see it.
- You can show this post to any doctor you are attending and invite them to make direct contact with RxISK.
- Prescribing seems to damage brains. Laura Marotta’s post and the many penetrating comments that came after it show doctors unable to see what is in front of their eyes or hear what people tell them.
- PSSD sufferers have had exactly the same experience as these days pretty well everyone does who has a significant adverse effect on drugs – we will have a post on this soon. The act of prescribing it seems damages the brains of the doctors who write the scripts. Prescribing causes an agnosia, a typical feature of brain damage – in this case a venomagnosia – see Come back when you Have a Medical Degree.
Postscript
I get more and more requests for consults on withdrawal every week. I am afraid I leave many unanswered or answer some tersely.
There is a reason for this. Its stressful knowing that there is no answer for the problems many of these correspondents have. This is not a message anyone wants to hear. Better for them to think Healy is a creep who doesn’t answer emails than to think there is no answer, and better than taking money off people when if people haven’t found their own way off a drug there is little I or anyone else can do – other than tell them that, which is not something they are inclined to believe.
No-one easily accepts the fact that so many million people can be screwed over like this – of course there must be an answer out there.
This is a pressing issue. As several posts here recently on assisted dying have pointed out, the situation is getting worse – not better.
Even though there are millions of people in all developed countries in compromised states because of treatments they for most part should never have been given, nobody it seems wants to tackle the issues – neither mainstream nor academic media. One of the biggest culprits in all this is the BMJ, who are managing things rather like the way the catholic church have been managing child abuse issues.
tim says
“Lessons”.
I studied undergraduate and post graduate medicine for ten years.
During forty years of medical practice, I attended regular continuing medical education programs diligently.
The learning, relevant to my specialist field, and in differential diagnosis and disease management was invaluable.
Looking back now, I did not gain sufficient insight into, or understanding of, the Adverse Drug Reactions (ADRs) that were to devastate the life of our loved one, and our family.
We were aware of many of the toxicities of the drugs we prescribed, but
the concept that you could take a commonly prescribed, “safe and effective” drug and suffer changes in emotions, personality, mood and behaviour, (via AKATHISIA) that could cause a person to end their life, was extremely hard to conceptualise.
Perhaps this is because the Patient Information Leaflets (P.I.L) are so worded as to leave prescribers believing that such serious Neurotoxicity was in fact underlying or emergent psychiatric illness?
( A concept possibly reinforced by the term “Neuro-psychiatric toxicity”?)
I had no concept that such NEUROTOXICITY could be misdiagnosed as “Serious Mental Illness”, and that serial further ADR misdiagnosis would lead to repeated incarceration, and enforced drugging, with denial of subsequent, inevitable, “medication”- induced, irreversible injuries, to a previously healthy, always happy, enchanting young adult.
The concept that very serious, life changing ADRs could damage and disable weeks, months, and years after prescription drug withdrawal only became credible after I had watched it happen in-front of me – (over many months and years).
This personal experience now leads me to advocate that both professionals, and those for whom we prescribe, deserve that potential vulnerability to misunderstand and misdiagnose A.D.Rs is addressed in both undergraduate and post-graduate medical education.
Many of the situations addressed in this important post and the “Lessons” 1- 16 require a change in our belief systems, and in our trust of clinical trials and prescription drug regulation.
Perhaps we could start by revisiting the words of Sir William Osler.
“Listen to your patient he is telling you the diagnosis “.
We must also listen to parents, loved ones, flat sharers and carers.
Increased consultation time would be essential.
Few prescribers would fail to welcome longer consultation.
With regard to the additional tragedy of serial, irremovable Psychiatric” labels resulting from the misdiagnosis of ADRs, the words of a past president of the R.C.Psych. might merit regular “diagnosis’ review, accuracy-audit, and above all, correction?
“Any diagnosis that we make – you should not consider this as being an absolute certainty”.
Finally:
“Come back when you have a medical degree”.
I had a B.Sc. A medical degree. A Royal College Fellowship, and post-graduate specialist diplomas and accreditation.
My reported concerns of obvious and life-treatening ADRs to a psychotropic prescribing cascade of unnecessary, toxic drugs to “treat” denied, previous psychotropic ADRS were met with ridicule and contempt.
I believe that I had a high level of concern, and observation for ADRs myself.
I could only act on the information available.
At that time, the lessons above were not available to me.
Surely, more accurate, detailed, comprehensive information on those ADRS which so profoundly affect emotions, mood, feelings and behaviours is now required for patients and for prescribers?
Gillian says
Thank you Tim, it’s encouraging (although sadly rare) to see Doctors respond as you have.
annie says
Valuable words, Tim
You might like to listen to another doctor, who also has “lessons” to impart …
I hope others can be spared the hell I went through with depression pills, by an NHS psychiatrist who says coming off them left him suicidal
Dr Peter Gordon is an acclaimed psychiatrist at St John’s Hospital in West Lothian
Twenty years ago he tried Seroxat, a drug that had only recently been licensed
Unfortunately, he suffered devastating side-effects which caused him great pain
He now campaigns for openness about the dangers of antidepressant drugs
By Dr. Peter Gordon
1 July 2019
https://www.dailymail.co.uk/health/article-7202413/I-hope-spared-hell-went-depression-pills-says-NHS-psychiatrist.html
Like millions of Britons who’ve taken prescribed antidepressants, when I tried to stop taking the pills I suffered serious psychiatric symptoms. In fact, I felt so suicidal that I had to be admitted to hospital.
One thing marks me as different, though — I am a practising NHS psychiatrist. My experiences have led me to campaign for openness about the dangers antidepressant drugs can pose — in particular to patients who want to stop taking them.
I have also lobbied for my professional body, the Royal College of Psychiatrists (RCPsych), to become fully open about its links with the pharmaceutical industry. For I believe that the drug companies hold a perilous financial grip over the College.
You’d think that my colleagues would be generally sympathetic. However, I have been marginalised, ignored and vilified as a troublemaker — and a leading member of the RCPsych even wrote to my employer questioning my sanity.
tim says
Thank you Annie,
It takes great courage and commitment to speak truth to power.
Nina Kemp says
Please can you give me some advice? My 2 year old granddaughter was prescribed Montelukast 10 days ago for worsening Asthma. The improvement in her breathing was amazing. However, the whole family immediately noticed a change in her personality and today nursery said she was a different child( she only attends 2 monings a week so it’s taken longer for them to witness the changes). We thought she was sickening for Chicken Pox but I started to suspect it was the Montelukast. On discovering the dreadful side effects today and recognising some in Harper, I advised my daughter to stop giving her the drug immediately. Please can you put my mind at rest that she won’t have suffered permanent pyscological damage from this dangerous drug? Also, through your research, have you come across a successful ( natural) diet that helps in childhood asthma ( or could you direct me to someone who could advise) please? Regards Nina Kemp
Montelukast Support Group says
Hi Nina, I am sorry to hear that your grandchild experienced Montelukast adverse side effects. Since it has been about 5 weeks since the the last dose, I hope she is doing better. If she is still recovering, there is a FB support group for people who experienced negative side effects from Montelukast. As of this week, there are now more than 17,000 members, so your family is not alone.
Anibal says
Hi im suffering from montelukas, i have really bad anxiety, can’t stand still always need to move, and sleep problems too, i need help, can you tell me the link to Facebook support group please. And any advice that can help me.
lynne faraone says
Thank you,for last weeks and this weeks posts..your post this week gives us all much hope someone is listening,someone is trying to help us understand,what has happened to our children…years and years,we have been speaking out,crying out,begging for someone to listen,writing petitioning and attending fda meetings….nothing,they didn’t help…your two blogs are the biggest help we have been able to get…and for that ,i thank you,and thousands of parents and children ty
Tracy says
Thank you for the post and spreading awareness. At the time my son was suffering horrifically from just 3 weeks on montelukast, we were desperate to help him. There was never any thought from doctors and to address toxicity in his body. The option was to medicate him with antidepressants and antipsychotics. “Mental Illness/OCD” was treated. We kept asking, “How can a child have full-blown debilitating OCD that happens seemingly overnight?” The reluctance of the child psychiatrists NOT to consider the impact of a new drug with a listed neuropsychiatric warning is mind-boggling. I wish I had the knowledge and confidence to insist my son had been POISONED. But if there is no medical solution to montelukast toxicity—it doesn’t much matter. I hope this can change. Thank you again.
Dr. David Healy says
Tracy
There is no known pharmaceutical solution – the medical solution is to keep him drug free for as long as it takes to get him back to a normal state
David
Caitlen says
Wouldn’t it be better to taper off the drug and cut down to the 5 MG child dose and then move to every other day, etc until you don’t feel withdrawal. Obviously if you can’t take the drug as the effects are unbearable fine, but tapering I have found is best if possible. I have tried dozens of antidepressants which wreaked havoc on my life and am trying to go off montelukast now. Definitely scared to from all that I’ve read. I don’t even try to tell doctors they are wrong as they don’t listen anyway. I just taper myself as they don’t know how to tell you that. It’s not in their job description sadly. They want you ON the drugs, NOT off.
Dr. David Healy says
Every other day is usually not a good idea. Best is to find a compounding pharmacy who will make up 4 and 3 and 2 and 1 mg doses and taper slowly down through those. That’s the best principle but in practice this can vary if you have a doctor with experience of handling montelukast withdrawal which I don’t and likely almost no respiratory physicians do.
D
susanne says
Countless numbers of people have been given the confidence to resist accepting yet more medications and been given the evidence that that what they claim about drug harms is shared by thousands of others thanks to these two unigue blogs.
There’s a programme on Radio 4 tomorrow 2/7/19
Inside Health – on :- Deprescribing -‘In a new series Mark Porter GP explores the growing drive to deprescribe as evidence suggests over 1 million people now take 8 or more medicines a day…………’ They’ve biased the report on vaccines in a previous episode – let’s see what they do with this. Re-runs on BBC Sounds. The over-diagnosis crowd of GP establishment land might scew things……..
susanne says
I thought it was quite an open and honest (as far as I could tell) programme as far as it went – there are more episodes to come . It concentrated on the EDeN Deprescribing Network – on twitter @EDescribeN It is apparently in early stages and still needing a lot of research – decades after Tim you did your training we are possibly in a worse state?. They would benefit from the accounts provided by people who contribute to the blogs as the reality is a million miles away from the aim of the project for most. Even now it was shocking to hear spelt out in public how incredibly sloppy medical treatment is for so many of us.It seems as though doctors should neither be prescribing or deprescribing as their lack of skill or training has led to causing so much harm. So what should the role of a GP be? Should there be a specialist qualification before a GP can prescribe drugs at least?
The presenter Mark Porter encourages feedback for which he receives continuing education credits – Dr Mark Porter @drmarkporter . Maybe medics would do better if they received similar incentives to show how their drug reviews have been carried out according to the deprescribing principles of – ‘being a collaborative process to ensure safe and effective withdrawal of medicines that are no longer beneficial appropriate or wanted , guided by a person centred approach and shared decision making’. But isn’t that supposed to be happening already…hollow laughter. But respect to those who are trying to changing practice in parts of the UK and in Canada and Australia. Maybe relationships with drug companies are different there?
tim says
Susanne,
Decades after I trained, are we in a worse state?
After the fifty plus years during which I have studied and practiced medicine, I conceptualise that we need to face up to some unpalatable realities, and then celebrate the astonishing advances in medicine which have unfolded during this time.
Examples that still astonish me include the introduction of highly active anti-viral drugs, transplant surgery and the availability of joint replacement surgery.
My perception is that these, and other successes may have provided a “trust and belief system” in medicine which allowed the successful pharmaceutical marketing of classes of drugs with very serious acute, subacute, chronic and legacy toxicity syndromes.
Prescribers and patients have “trusted and believed” these to be “safe and efficient”.
I have seen the devastation of life, and quality of life, resulting from the denial and repeated misdiagnosis of psychotropic drugs. Both during use, and after cessation.
I find the refusal to even consider these ADRs by prescribers, and professional leaders as being in contradiction to the ethos of medical practice which I learned, and strove to deliver.
I felt that “Inside Health” may be a good start, but, from where are “Eden” and de-prescribing physicians going to receive reliable information?
Will they be able to incorporate the sincere and vital concerns recorded above?
I would personally wish I had experienced a debate about the vital lessons that Professor Healy defines above, in my final year at medical school.
I believe that such a final year debate is even more important now.
On-line, sincere communities such as RxISK are a vital resource for a collaboration between policy-makers, prescribers and patients.
Perhaps Inside Health might explore the contribution to be made by this informed and invaluable resource?
susanne says
Have tried writing to them before Tim and have sent copy of Rxisk again -if more people sent in it might make a difference – it is worth trying – maybe if loads of people responded to their twitter pages (above) that will be a more productive option
Gillian H says
Thank you so much RxISK for both your posts on this. It is much needed light at the end of a long dark tunnel for many of us. I will be showing this to my sons doctors. Thank you for taking the time to listen, respond & advocate, it’s it so appreciated
susanne says
Thanks Peter G. , one of the small band of psychiatrists who won’t be bullied into silence by the dirty tricks of the college of psychiatrists.
Currently there is an investigation going on into bullying and harrassment by BMA members, including by senior bma members. In April the BMA cttee attempted to set up an investigation into it’s conduct – to be led by themselves. The women who first spoke out were having none of it – now a female QC is running the show. (thebmj April 4 ‘Doctors alleging sexist behaviour at top of BMA critisize it’s formal conduct procedures’. But Beth McCarron Nash defended her BMA male colleagues saying ‘It paid for a nanny for my son….if it had not I would never have risen as high as i did within the organisation’. hmmmm. Strange that none of the women who have been promoting women’s roles in the organisation and who have chaired the GP cttees in the past few years hadn’t seemed to notice what is common knowlege amongs it’s members ,or have they kept silent too? Surely not. . More male GPs are also speaking up now the cat is out of the bag. Better late than never.
The college of psychiatrists needs to catch up Their conduct is disgraceful. Peter has taught them a lesson . The GPs have stirred things up. There needs to be a similar independant enquiry into why so many psychiatrists keep quiet about the things he was highlighting both about bad practice and the bullying culture in medicine. Peter chose to retire and the smear campaign against him has backfired.
mary H says
The comments last week and the post this week have really shaken me into realising that we may do well to change our website -“antidepressant withdrawal” – to simply “prescription withdrawal”. Although not strictly relevant to our posts, I feel the need to add one which pinpoints Montelukast and its problems and include David’s 16 points which spell out so clearly the need for ‘joined-up thinking’ if we are ever to tackle this mountain which we have been attempting to attack for so long.
We need to spread these posts far and wide, over and over again until we can finally and honestly say “I have done my utmost – to the point of being called obsessive !- to share with others the very real need for caution and common sense when accepting prescribed medications and their possible adverse reactions.”
Stitchy says
This sums up what I have no for awhile and have been practicing myself . First if you find yourself in this awful predicament You need to figure it out as fast as you can . Than you need to stay away from all Drs. Being polydrugged more will only make healing more difficult and the situation 100x worse . And usually in almost every case this is what will happen . Drs won’t and will not believe they are causing this much damage . The best way to heal is too pardon my French stay the fuck away from Drs . That’s your only chance .
susanne says
Stitch – if it’s possible I agree that’s the best option – David H advises Tracy to keep her child drug free for as long as it takes – where else would people get that sort of honesty ?. And Some will take that advice because there is enough information as well as trust – trust is the saddest loss for some of us especially when caring for others. years ago people used to cut medications or throw them away and still do rather than try to have a productive discussion with prescribers – the excuse for over prescribing , that people are ‘demanding’ more drugs is largely a cop out .Doctors have the prescription pad.
Carla says
If these meds cause harm, the public have a right to know.
The point I am trying to make is, it is not necessary to give out these meds if they induce severe medical maladies.
If you life depends on a med, then one has no choice however, there may still be safer alternatives?
Sometimes the remedy is worse than the disease.
That grim reaper, should be placed on many meds that cause HARM!
annie says
As the responses show most of the harmed were children with Montekulast. Parents of small children cannot stay away from doctors. The children need their inoculations (!), they need their asthma checks, they need to know that the health of their child is being cared for. Nobody wants a sick child. Parents worry.
I would imagine many of the Montekulast parents will be returning to their doctors with pages testimonies, showing their child (or adult) is not alone, and this sort of evidence can only help provide doctors with affirmations that perhaps they should think twice.
It would be a good piece of research to hear what the doctors say when confronted with Montekulast concerned parents. One would expect that any decent doctor would take on board such a strong evidence base as provided here.
Its the same with all the drugs brought up in these posts; this is not a question of people turning to the internet for information which is often scoffed at by doctors, but, parents presenting a professional profile of a drug that has too many incidences of harm, to be taken lightly?
I’d love to know what sort of feedback patents get when they return to their doctors with ample reasons for preferring not to use Montekulast because of severe behavioural problems, with a drug supposedly given in good faith?
Always, at the back of my mind, is a glaring hole in all these tv and radio programmes that don’t feature adverse events. As Tim points out, something like RxISK could be an excellent training resource.
Annie says
Thank you Tim it is so rare for a Dr to say they could do more……let alone apologise for their shortcomings, We patients get blamed or labelled for something beyond our control.
I did a 2 year taper of benzos just checking in with the Dr for repeat prescriptions, he clearly did not know how to help but,luckily I had found ‘The Ashton Manual’
It was a tough 2 years but nothing prepared me for when I jumped off. I was prepared that the tapering and withdrawal would affect my day to day living, but when I jumped off I was plunged into a hellish existence of severe insomnia, inner restlessness, depression agoraphobia and Suicidal idealisation.
When I eventually went to the Dr,i was referred to a psychiatrist who diagnosed GAD and ‘Clinical depression’ of course more meds were given to me, mirtazapine, effexor, pregablin, zopiclone and quetiapine. So off benzos and my body was raging yet the supposed Firefighters just add to the flames. In desperation I emailed a chief firefighter, a professed Expert who told me to seek help from others whose houses were on fire…..( the online community )
How did we get to a point where the medical profession has not trained anyone to help with ADRs, Withdrawals, protracted withdrawals permanent damage.?
Professor Heather Ashton, who will be 90 11th of May this year, got funding to work with over 300 benzo dependent patients, from observing and TALKING to her patients she was able to formulate something that could help…….Why can’t the medical profession do that now……..if the harms from benzos were accepted, why not the harms from other drugs?
susanne says
David
Is there flexibility in what professors/trainers/tutors psychiatrists GPs and other health professionals can formally teach students? For example I know there are components on Critical Psychiatry which don’t go far enough in many ways but would there be a problem with introducing Rxisk to students? There aren’t that many students who even attend ‘user’ led events , they leave training without realising the amount of work which goes on outside the curriculum.
Dr. David Healy says
At the moment there is no flexibility. Worse again, not a single doctor gets any training in how to recognize and adverse event. Added to that they think patients views of a drug’s effects are just not trustable – they don’t think those of us on a drug can distinguish between drug induced suicidality and depression linked suicidality or drug induced sexual dysfunction and depression induced dysfunction. Which of course means these things are never going to be recognized.
David
susanne says
Thank you David. Here’s a twist in the tale that doesn’t get mentioned by all those who write in ‘academic’ journals about suicide – which wouldn’t publish the truth anyway. Some people have such horrendous experiences of the way they have been treated ,and would be if made to encounter ‘health services’ ever again – that they commit suicide to avoid them. That is what happened to an old friend’s husband
Heather R says
That’s what happened to my son too. He died, mainly because his akathisia was so terrible and unbearable, but of course no one knew it was akathisia at the time, least of all him; he simply felt he had gone incurably mad. He was however highly intelligent and realised that the social workers and psychiatrist he spoke to when tentatively expressing his suicidal thoughts, as we are all, laughably, implored to do, didn’t have an inkling of an idea how to help him, rather instead resorting to ridicule and belittle him, so he decided death was the only option. He wanted to remove himself from a hopeless situation and in so doing give us, his ever loving parents, our lives back, free from battling to get help for him. There was of course no help out there. RoAccutane, (just like Montelukast, with such similar effects, btw), followed by Seroxat, followed by a whole plethora of others over 11 years on and off, ruined his life and his wonderful brain.
His dad and I, almost by default, have become core members of a Suicide Prevention Group and have the opportunity to speak at a Suicide Safer County Council, CCG, clinicians and many others’ convention this coming week. I’m planning our speech. It will cover the following: what happened to our son, what could have prevented his death, what change we want to see NOW to facilitate such change. There are 4 families in this, we are the only RoAccutaners. We are however all agreed that when as carers we tried to help,our young, we were out in the cold. There was no compassion for them or us. ‘If you want to kill yourself, there’s nothing we can do to stop you, you are free to do it’ was the mantra, to people suffering akathisia. I’m interested to know what readers of this blog might suggest as a way forward. It’s no good talking about banning all these drugs, that’s nonsense.
But how to cope when a loved one suffers anxiety expressed as a desire to die? My suggestion is: a three tier system in place.
1. Immediate compassionate response such as offered by the charity (independent of the NHS but with enlightened listening psychiatrists on its books if needed) SUICIDE CRISIS of Cheltenham, aiming to open other branches in other regions, results have been so good.
2. Patients and family, if h/she agrees, then offered day Centre care with trained staff for say 6 weeks, then graduating on to lower intensity day Centre.
3. At this more informal centre, mostly staffed by trained volunteers who genuinely love people and care about them (this qualification VITAL) where creativity and supportive companionship offered till patient feeling stronger again, but with option to come back on visits if suffering any occasional blips as their confidence grows and mental unwellness recedes. It goes without saying that akathisia be checked for, from the start, and medication use avoided where sensible and possible, tapering advice given and monitored.
I know this could have worked for our son. We’ve tested it over 2 years with an informal Therapy Centre and the results have been good. All we need is the CCGs to put money into these places so they can provide staffing at effective levels. They could fund this by prescribing less antidepressants etc? But how to make the NHS change policy and run with this whilst Pharma have them in an armlock….
Dr. David Healy says
Heather
I have a problem with this. Unless, someone diagnoses what’s happening as a toxic effect of a drug and this shapes what happens next, then all the Care is the world is not Care and is further going to imprison the person in trouble. Again and again I hear of situations where Carers in settings like you describe get sacked if they dare say I think this guys problems are being caused by his drugs
D
Nina Kemp says
Heather
So very sorry to hear of the traumatic time you’ve had over the years leading up to and since yiur son’s death. So pleased that you have channeled your grief into helping other families by raising awareness of the dreadful side effects of drugs like Montelukast. My 2 year old granddaughter was prescribed this dreadful drug 10 days ago and the side effects to her personality have been so extreme that it made me research the drug. Needless to say, we have stopped giving Harper this drug but we are now so very worried that there may be lasting damage to her developing brain. I appreciate your post is over 3 years old but would so appreciate any information you may have learned during your research and investigation please. I must add that I am a trained counselor for Cruse Bereavement, have dealt with several suicide cases and I am willing to support any of the parents in your group. Regards Nina
mary H says
I feel that there is, also, a fear of listening to alternative ideas within our communities in general – as if, by listening, they will be drawn to matters which they should not trust. Surely ALL sides of a story is worth listening to – aren’t we, as humans, capable of judging for ourselves? This was brought home to me recently in two separate incidents, both connected to your visit to our Open Meeting.
1. A local hospital pharmacist and her husband ( a trainee pharmacist) had been told about the meeting and were reminded about it a few days before the meeting. The husband had shown great interest in attending on your first visit ( but was not present), so I sure expected him to appear that night. There was no sign of either on the said night.
2. A mother whose daughter is studying medicine at present had shown an interest in the first meeting but had not attended. Just a few days before the second meeting I spoke to both mother and daughter. Daughter was very keen to attend and mum said they would both attend and thanked me for reminding them about it. They did not turn up.
Those two sets of people, to my mind, are the very type that we are not reaching. People who are connected to the medical world in some way and yet seem unable to come along with an open mind, willing to question the facts that you throw out ( if they feel the need). Unless we can engage the people who have such connections then it seems a very sorry state of affairs. Why can’t so many people in our community ( in particular here) feel pride in the fact that we are lucky enough to have your expertise on our doorstep?
susanne says
Mary Seriously it is their loss – nobody thinks it could happen to them – until it happens to them – then sadly they are not forwarned by such as your meetings. As a member of the public seeing your notices I would defintely be attracted to find out more but might have reservations and make wrong assumptions if they are held in a church . Just a thought.
mary H says
Thanks for your thoughts Susanne – the examples given are actually members of the said church! The hall is used by many local groups – it is the only one that we can afford!
annie says
Yesterday, RTV6 News in Indianapolis published this story about Heather McCarthy pushing for a black box warning on Levaquin, a fluoroquinolone antibiotic, that she claims caused her son Shea to take his own life. “Dr. Charles Bennett with the Southern Network on Adverse Reactions (SONAR), has been pushing the FDA to better warn the public about the psychiatric effects of the drugs.
On September 11, 2014, Bennett filed a petition with the FDA calling on the federal agency to change the drug labels to better warn patients of the risks.
On July 10, 2018, the FDA responded with a safety announcement in which it called for label changes on fluoroquinolones including more prominent and consistent warnings for mental health side effects.”
Know Your Drugs
https://www.theindychannel.com/news/call-6-investigators/mom-pushes-for-psychiatric-black-box-warning-on-antibiotic-after-purdue-students-death?fbclid=IwAR0UKARMCID1x54j89bADakuryDS01JfXkvMA9ShApYMqHa3B38ayxgDCKw
McCarthy said Shea tried to tell his doctors he believed Levaquin was to blame, but they didn’t believe him.
“So often, the medical professionals give that no credence,” said McCarthy. “He felt like it was messing it with his mind, and it was his impression it was coming from this drug.”
victoria latimer says
I am not a doctor. I am a person who took Singulair and stopped it over six years ago and I am still feeling as though I am brain damaged. My worst allergy symptoms in July of 2012 were tolerable. I would develop extreme hoarseness and iIt was hard to swallow at times but not painful. Ten months after starting generic Singulair, my sinusitis was slightly better but I felt like I was losing my mind and so did my boss and clients. I stopped taking it May 10, 2013. From there, my multitude of problems developed and magnified.
Six years later, on July 5, 2019, I have lost seven part time, relatively easy jobs. I had to leave the security of my paid for home because my husband didn’t understand and he became more verbally abusive. I have lived off of my IRA and some inheritance monies. It has been six years! I am fairly certain that I will never restore to the person I was before I took Singulair. My personality has changed in a negative way.
I work in mental health. I have worked as a prescreener for number of years, in the past. I would assess and decide whether mental health patients were at such risk as to require inpatient care to protect themselves and others in some cases against their will. Mostly, I saw suicidal persons.
Now, I think of suicide almost once a day. Never before a few years ago. Emotions are much more intense since taking Singulair. But I do not allow myself to go any further than the thought. I will not give up in that way.
Please help me. Before I run out of money. My goal and my focus is to sue Merck and anyone else discovered to know what they were doing. I believe they knew but there was too much money to be made around the world to not to push forward. I have no children and most of my former support system are distant now.. They do not understand. If I am able, I would love to be part of the trailblazer that proves evil does not prevail and that we the people will not tolerate their carelessness, their cutting corners
victoria latimer says
Greed is no excuse!! We must all unite and speak up. I am angry and I am ready to fight. I am supposedly Irish. I am a Taurus, and I don’t give up!! Just trying to cheer myself up. : )
annie says
Suing Merck!
Here’s what Lawyers and Settlements had to say …
Information from 2008/9, concerning the position with Singulair
Singulair Linked To Suicide
Singulair, a popular allergy medication which is used to treat stuffy nose, sneezing and other allergy symptoms including asthma, is being investigated by the FDA after reports of suicidal behavior in adults and children. The investigation was prompted by three or four suicides linked to Singulair, including a Florida teenager. Health Canada is also investigating the allergy medication.
See Readers comments, 2008-2016
https://www.lawyersandsettlements.com/lawsuit/singulair.html
Product Alert
FDA Investigates Possible Suicide Link With Montelukast (Singulair)
https://www.medpagetoday.com/productalert/prescriptions/8923
“will assess whether further investigation is warranted.”
annie says
Juan Gérvas
@JuanGrvas
Montelukast (Singulair and generics) side effects. Mental health side effects, including suicidal thoughts or actions. #montelukast (#Singulair y genéricos). Efectos adversos graves mentales, incluso suicidio.
Singulair (montelukast) and All Montelukast Generics: Strengthened Boxed Warning – Due to Restricting Use for Allergic Rhinitis
https://www.fda.gov/safety/medical-product-safety-information/singulair-montelukast-and-all-montelukast-generics-strengthened-boxed-warning-due-restricting-use
[Posted 03/04/2020]
AUDIENCE: Patient, Health Professional, Pharmacy, Allergy and Immunology
ISSUE: FDA is strengthening existing warnings about serious behavior and mood-related changes with montelukast (Singulair and generics), which is a prescription medicine for asthma and allergy. FDA is taking this action after a review of available information that led us to reevaluate the benefits and risks of montelukast use. Montelukast prescribing information already includes warnings about mental health side effects, including suicidal thoughts or actions; however, many health care professionals and patients/caregivers are not aware of the risk. We decided a stronger warning is needed after conducting an extensive review of available information and convening a panel of outside experts, and therefore determined that a Boxed Warning was appropriate.
Deirdre Doherty says
Ironically, the unaffected by treatments are even more vulnerable than the already affected – but no: it couldn’t possibly be all true.
“Consider a turkey that is fed every day. Every single feeding will firm up the bird’s belief that it is the general rule of life to be fed every day by friendly members of the human race “looking out for its best interests,” as a politician would say. On the afternoon of the Wednesday before Thanksgiving, something unexpected will happen to the turkey. It will incur a revision of belief.*”
– Nassim Nicholas Taleb
Katie B-T says
Regarding the postscript, I am extremely grateful for David Healy and RxISK for letting me know that there is no solution at the present time for complicated withdrawal. As I recall, it was a process in realizing my psychiatrist was making things worse and I had to stop listening to anything he or other doctors were saying. I wanted there to be an answer when I talked with Healy and Rxisk. But it has been invaluable to me to hear the truth. It is terrifying talking to doctors once I realized how they would recommend things that would keep hurting me. Having RxISK in my corner has helped me to push back against them and protect myself. I’m badly maimed but alive and I’ve been able to keep employment throughout. I can’t imagine the toll it does take to keep telling us there is nothing, but I just wanted to say thank you. There is hope in what RxISK is doing and that also counts for a lot.
susanne says
Thank you for a great illustration Deirdre ,I haven’t heard of Nassim Nicholas Teb before so will read more asap. What is so frustrating to say the least is that prescribers it seems don’t know enough about how to revise their thinking . Even if they are encouraged not to think outside the box and to stick to guidelines I would think that enough would start to say hang on we are not going along with this..We were once taught about Bayesian Theory which has iteself been revised (as theories should be) I think ,but at it’s very simplest says in the light of new information, revise inferences (or opinions). But surely someone shouldn’t need to be trained to spot an adverse effect when a person’s history shows only one new piece of evidence – a drug was introduced. consider and investigate the possibility not ignorantly rule it out when the best scouce of evidence is right next to them… The reason for the stubborness about not changing their opinion is illustrated by your Turkey analogy but Turkeys have no choice of course, human being should if shown options, not be treated like captive turkeys . If enough of us learn about the subtle control over the population by the prescribing of drugs for everything regardless of harms, the scource of ‘food ‘will be massively reduced – it’s become a case of turning us into geese as well as turkeys ,to be stuffed by ever more drugs, a medical version of foie gras to provide nice fat incomes for the few, ably assisted by medical colleges and the foot soldiers who prescribe and who should be resisting as conscientious objectors. We need to be cynical about the reason behind the publicity over over diagnosis and over prescribing remembering thelessons from tobacco sales and other addictive drugs as well. The few massively benefitted until the cost of their rewards was too much for the country to bear in medical treatments. I think We also need to be careful not to be fooled by a few success stories of public against drug companies although the campaigners are massively admirable to and respected, they can be used to give the impression of moral behaviour, while stuffing ever more geese behind the facade.. The number of comments on the blogs show knowledge and resistance is spreading – but the few who bolster discredited beliefs and practices are slobbering over a feast too good to give up. I am obviously not tarring all with the same brush – not that daft – but trying to understand how one group can know about the suffering they are causing and still get away with it in a so called democracy, It is a crime.
Deirdre Doherty says
Hi Susanne
Though a lot difficult for me to process or to retain (now), where I feel the same as you regarding the rest of your comment, I recommend also following Nassim Taleb: very no nonsense, provocative and also great with metaphors and analogies as a way in for the lay person….
His book and the analogy of ‘The Black Swan’ remind me of the necessary and profound change to our former belief systems when hugely impacted by unexpected ‘Black Swan’ adverse effects (at least to us and in our lives; to families as the secondary impacted, social impact).
(And how unlike some organisations or even patients impacted by highly traumatic events in a more ideal world we can’t harness ‘Anti-Fragility’ – “a property of systems that increase in capability to thrive as a result of stressors, shocks, volatility, noise, mistakes, faults, attacks, or failures”).
Last week Taleb got into an intellectual bitch-fest on Twitter with Steven Pinker (who, amongst other things believes there is less violence today than in previous generations) and Michael Shermer (who writes about why we believe the things we do) regarding anecdotes and data. At the same time, David Healy had post ‘What Happened to Science and To Us’.
Of course a lot above my head (but loving these intellectual loggerheads and the access) I put it to them all regarding what they all thought about the fact that in the 21st Century no-one can access the data for the most important thing in their lives: regarding their health and that of their families. And that we are dependent upon anecdotes as the plural of data. Taleb’s views on ‘Pharma’ however, are very clear.
Another intellectual argy bargy a few years by Sam Harris (a neuroscientist who also writes about ‘free will’ – or the illusion of free will in his view; also interesting in the context of psychiatry etc. generally) and Noam Chomsky regarding the role of ‘the moral significance of intention’ in harms caused (in this context by the US Government) is also worth a read.
My personal view is that the harms and damage caused by GSK (beyond Study 329 and Bribe to Prescribe being child abuse) at the very least met the Criminal Law requirements of ‘knowledge of wrongdoing’ and ‘intent’ and breaches of Human Rights and Children’s Rights. (And where, if a Judge or Jury could get akathisia, and imagine their own child befalling the absurd and horrendous fate of too many, no special treatment, for corrupt Pharmaceutical Companies who want the social rights of ‘personhood’. Prison.
http://www.critical-theory.com/sam-harris-awkwardly-debates-with-noam-chomsky/
Celina Williams says
Tell those wanting to taper off their Rx drugs there are support groups that can help. I was in PAWS (Protracted Acute Withdrawal Syndrome) (very bad place to be) because my doctor had me coming off WAY TOO FAST. I honestly didn’t know if I was going to make it. I was fortunate enough to be able to find a support group on facebook (of all places) that literally saved my life. It’s called Cymbalta Hurts Worse. When I joined the group 2 yrs ago there were around 9,000 members in the group. Today, there are almost 20,000. Think about that. This group is for only one brand of antidepressant (though all of them are the same) and there are 20,000 people who just happened to find that group. Think of how many others are out there. This is a travesty, and I would even go so far as to say genocide. Pig pHARMa needs to be stopped and prosecuted. Cymbalta is the antidepressant my doctors had me on for the last 18 years. I never should have been put on this Rx drug! Thanks to the support group and their excellent knowledge and experience I was finally able to begin a VERY SLOW taper. I’m currently around 2/3 of the way through my taper. This drug is a complete nightmare, and trying to get off of it is much worse. IF you do it the correct and safe way, it can be done. There are many support groups for various drugs on fb. Also Ann Blake-Tracy and Dr. Kelly Brogan are two excellent sources for help. You can also find them on fb. Please don’t ever try to cold turkey off any of these drugs!
Stewart says
I have had to come off Benzo’s, which, I can assure you, was no walk in the park. I have been taking Montelukust for a couple of years, and, in that time, have had two suicide attempts, both, thankfully, not succesful, i also suffer with severe insomnia since starting this medication and, I have mental health issues, to which I currently take Seretide.I used to be a happy, go lucky dude, but, can assure you, I am a former shell of what I used to be. The point is, a lot of the doctors are visited by drug reps, which get kick backs for that surgery using a certain drug. Unfortunately, when I was a kid, I was prescribed Ritalin in the early seventiies, I think that the damage was done at an early age by re wiyring my brain by giving me the equivelant of amphetamines, there is no money to be made in having a healthy patient lol, I know that I ought not to laugh about it, sadly, it is the truth.
Stewart
By the way, thanks for everyone sharing their heart wrenching stories, I pray that things become easier for you guys