Overview | Model | Ion Channels | Memory | C-Fibers & Touch | Mysteries
Half a century of problems: Time to get serious
The problems that people can have stopping psychotropic drugs have been recognized since the 1950s. There is no agreement as to just what happens, or how to tackle what’s involved. Some of the symptoms that some people experience on stopping antidepressants, benzodiazepines, dopamine agonists or antipsychotics are puzzling.
These withdrawal symptoms can often be severe, even with a slow taper over many months with a liquid version of the drug. There can also be long-term problems after stopping – anything from cognitive difficulties to sexual dysfunction.
In this section, we put forward a new model of what might be going on in terms of the underlying physiology.
The first part – Complex Withdrawal Model – takes a brief look at the history of psychotropic drug withdrawal and outlines the main hypothesis that is being proposed.
We also provide a number of other articles which give additional details and act as a starting point for those who want to help research these issues.
What you can do for us
We need your help to explore this model. We don’t have the answers, but we hope you will help us search for them.
We think there is an overlap between protracted withdrawal and Post-SSRI Sexual Dysfunction (PSSD), and that researching one may help the other.
You might be a withdrawal sufferer yourself, or you could be someone who hasn’t experienced these issues personally but might have important information – anyone from a hairdresser to a scientist.
Hairdressers? Lots of people from outside conventional medicine can help – beauticians, massage therapists, lifestyle coaches, people with a background in herbal medicine or complementary medicine. For example, hairdressers have been noticing for years that hair extensions or color doesn’t take in people on antidepressants, without getting into speculation about why.
A key component to the model is the effect of psychotropic drugs on the nerves that among other things serve our sense of touch. All kinds of people may right now be noticing the effects of these drugs in a way that could shed light on what goes wrong and how to put it right.
And this is what’s needed. Observations. We do not need complementary theories about boosting serotonin or detoxification, most of which have been captured by the pharmaceutical industry anyway.
Pharmacologists and physiologists can help also, but compared with twenty or forty years ago, pharmacologists and physiologists have been marginalized within universities and are thin on the ground.
There is a huge amount of evidence lurking “out there” that can shed light on aspects of the model. Much of what is involved though is also new and no one can be an expert in all the elements.
We hope that the abilities of everyone reading these pages and considering the different components of the problem from a variety of different perspectives, will advance our understanding.
Comments can be added below. Tell us about your observations, ideas, research efforts and anything that might help to provide insight into the issues.
Tools & resources for withdrawal
RxISK has a number of tools and resources to help inform and support those experiencing withdrawal problems, or for those who are about to start a drug and are concerned that it might be difficult to stop at the end of their treatment.
In Drug Search, you can input the name of a drug and see details of side effects that have been reported to the FDA.
Anyone experiencing withdrawal problems, PSSD or any other side effects can complete a RxISK Report. This asks a set of structured questions and provides you with a score to help work out whether your problems are linked to stopping a medication. You will receive a free report that you can take to your doctor or pharmacist.
Guides & Papers
We have a number of guides from RxISK’s Medical Team covering the issue of dependence and withdrawal in Guides & Papers.
Our blog has featured a number of articles about drug dependence and withdrawal. Click to filter for withdrawal-related posts.
This is going to sound profoundly strange but something has been gnawing at my mind lately. In fact, I just journaled about it a few days ago, then I see it written in the article Complex Withdrawal Model. I was poly drugged for over 30 years, clean now. I refuse to believe that I’m ‘clinically depressed’ and in need of antidepressants. They have done enough severe cognitive damage. But I too, live only in today. I’m unable to plan for my future or even see it. I can’t even see into next week. And it’s not because I don’t want to. I’ve been recording my thoughts and behaviors trying desperately to figure out why my days are only filled with taking care of my desires and needs: salt, sugar, coffee and cigarettes and nothing more. My entire life seems centered around all of these things when I know better, I’m not a stupid person. I no longer socialize, I lost the ability when I began taking Klonopin mixed with other psychiatric drugs over a decade ago and never relearned it. Then I watched one of Dr. David Eagleman’s ‘The Brain’ documentaries where he talked about this very thing. He said what separates man from animal is our ability to plan. Planning ahead. But what happens when our capacity to do this is diminished? I’ve read all the literature that benzo’s not only have a direct relation to cause Dementia but that while taking them our brains do not create new memories. Our memories are the very core of who we are as human beings, is it not? I would love some kind of research performed in this area of brain impairment, too. Because, if this is the case, this is truly horrifying.
Hey, Sandra, I’d like to respond. From 1974-75, until 1994, I was given over 50 different psych drugs, and that was hell. 3 major, near-fatal hospitalzations. In 1994, I went on clonazepam(Klonopin), and started “tapering off” immediately…. I got to where I usually didn’t need any, and didn’t take it most days, but would take 1 or maybe 2, when I needed it. They were .5mg / 1/2mg….3-4 years ago, the Docs. at the local hospital started taking me off abruptly, then putting me back on!
“Salt sugar, coffee, cigarettes”? Hey, I can relate! Don’t mess with my coffee & cigarettes! Now, I roll my own cigarettes, with filters, natural tobacco, and a hand roller. It’s MUCH cheaper, and I have a sense of empowerment. I can do it myself! I have to limit myself to 1 cup of caffeine coffee, but I use raw sugar or honey, and cinnamon. YUMMY!
My “salt&sugar” was mostly “comfort foods”, and “convenience foods”.
So when I can, I try to eat an orange or some other fruit. Baby steps.
As for the “planning” you talk about, I feel like I’m “lost in the moment”, which is ALMOST like “living in the moment”, but not quite! I’ve known for a long time how truly dangerous psych drugs are, but I didn’t know so many other folks have suffered so badly. I’ve been very much a “lone wolf” for a lot of years. Sure, got lots of “friends” in town, but also can look at it like I have no real friends. Many of my friends are either dead, or very disabled from psych drugs. More than myself. I hope you see this reply, and reply back. Last year, I found “madinamerica”.com, and some other online sites, like “beyondmeds” , where others like us go to share. If I’d known THEN, what i know NOW, I would have been more diligent about tapering off benzos! Benadryl doesn’t help much, but it’s better than nothing! I wish we could *talk*, I feel like we could relate. Be happy! ~Bill
This reply comes very late, but you described EXACTLY the way I’ve felt since tapered off of Pristiq in 2010-11 (yearlong taper). I’ve tried to describe it, but usually end up attributing it to having no career (disabled in 2001 by dystonia pain likely caused by Zoloft), no remaining family, all pets have died, no sense of home anywhere, etc.
I have a few brain MRIs that show SIGNIFICANT cerebral atrophy and ischemic white matter disease, referred to as “a dementing process” by neurologist. Cause unknown, but I have my theories. I’m 56. The first MRI showing this pattern was in 2012.
I can remember, but I can’t SEE, feel, or anticipate any future. Only doom. It’s like a black abyss. I occasionally get a sudden urge to take a shower or a quick walk and have to do it IMMEDIATELY because the impetus and motivation are gone in a flash. It usually comes later in the day. Otherwise, I’ve gone weeks without bathing or even thinking of it. I was previously a very well groomed, meticulous person and was chided for never having a hair out of place.
I don’t drink much coffee and don’t smoke, but can imagine that both might offer some stimulation or emotional energy. For a few years after being on SS/NRIs for 15+ years, Vyvanse helped me feel IMMENSELY. I’m only throwing that in as an FYI and not a suggestion.
I would greatly appreciate any input from others feeling this way. It’s a living hell.
Thank you. I wish you well.
I recently was weened off of clonzapam over around a two month period. Was taking .2mg I twice a day as needed for three years. There were numerous days where I would take it one day and maybe not take it until 3 days later. After three years I was told I needed to get off because my pain management doctor stated there was a new law passed for pain management doctors that they could not prescribe pain medication to people who are on a benzo. I have Rheumatoid Arthritis so I can stop my pain medication. I had three months to get off. I was immediately taking off my .2mg and Taking .1 of Clonzapam for 15 days and then 1/2 of .1mg clonzapam every other day. I started having burning in the skin. Every where the skin burned my muscles started to drop and I have this loss of elisticity in my skin and this scaled skin and looks like some type of skin problem every it burns from the inside. My neurologist thinks I am having some type of reaction to coming off of the clonzapam. He put me on phenobarbital every other night and I am taking clonidine three times a day and neurotin. I can’t think straight. My memory is completely gone and I can’t form sentences correctly and my speech is impaired. My head is dizzy. I have eye spasms in my eyelids. Sometimes I can’t even lift my eyelids. I am scared that my skin will not come back as if this is something that is attacking my colligen and my muscles.please if anyone has had this happen to them any information you can provide. I just don’t know where to go from here. I have been off of it for a month and nothing is changing.
I was on Klonopin twice a day and 1 mg. Of Xanax 4 times a day along with the other meds. I was on they dropped the Xanax fast and now the Klonopin they have dropped off they have tried other meds..to fill in for them and I seem to have every side effect that there is. Now I have norphethy with the burning ,itching , spark (electric shock feeling) in my feet and hands it feels like I have bugs crawling on me at times I am not sure what to do they will not let the office I go to prescribe it much longer I don’t know if this is the same you are having or not . I also have a odd feeling with my top lip and teeth and the left side of my head I can’t describe the feeling I have in my head other than when I touch it to me it make a noise like thumping a melon to see if it is ripe or not and can think of any other way to describe it right now my sleeping habits are a mess and I have tried to change them with out any luck also I have noticed agitation is bad and things like typing on the phone that make that type on noise is bothersome and hitting the keys can be as well do to the lack of feeling in my fingers tips. I could go on and on I am not sure this is the same as others are having or not it started with tingling in my feet and now it is from my waste down the palms of my hands get very itchy at times I wish I would have know this before I started taking it . Again I am not sure it is the meds. Decreased I have been tested and in the hospital for this and all the test came back OK.
Was put on klonopin and taken off too many times … possibly 4x … but as you say, it’s hard to remember. I was taken off fast each time and each time landed me in the psych ward months later. I couldn’t take what happened next so would go to Dr and was told I had been taken off klonopin way too fast and was reinstated. That no longer worked for me or is an option for me now. I am suffering from severe anxiety and muscle spasms of my right face and jaw. I am certainly depressed and sometimes feel like I cannot do this anymore. Just want you to know I truly understand and hope to hear from you.
Hi Tasha! I am going through all the withdrawal symptoms plus a couple symptoms I haven’t heard anyone else mention. I’m in my faith month of cold turkey from taking Xanax, 1-2 bars per day. That’s 2-4
mgs. per day! I am now going through the worst part, I believe. I feel heavy all the time. It’s hard to vocalize my thoughts, though I find myself talking to no one in particular. Also, the itchiness is driving me crazy! And my fingers curl into my hands as well as my hands curling. I’ve seen dementia patients with these and wonder “Do they have dementia? Or is it withdrawal symptoms appearing like or leading to dementia(Alzheimer’s disease)? The floaty feeling I have on top of this is truly hard to describe. I pray to someday get over this, but as I am now 65 yrs old, I wonder at times if I’ll have these symptoms until I get the only one true relief…. Death. Sorry. Being a bit dramatic, yet the depression I feel is very real. Hard to be optimistic.
Hi Tasha, I can relate. I weaned myself off klonopin over a 2 month period. I know it was too quick. It’s been close to five months since being off them. I also have a problem with my elasticity in my skin and I believe my collagen. I literally aged over night about 10 years in my face. I have other difficulties such as always feeling very physically stressed. Very foggy headed, cognitive decline. Etc. Can you please contact me at firstname.lastname@example.org. I hope you are healing.
Me!! A month off Ativan and all of the burning in skin and bloodshot eyes and heavy eyelids. I’m fact, I just googled bloodshot eyes and eyelid heaviness, and it pulled up this website. I just read the comments and ALL of this. I’ve been mostly on a benzo for 15 years. I stopped more abruptly than I should have, but I was done. They’d ruined my life long enough. I read an article that suggested joining a site called benzo buddies. I understand the sugar, salt, coffee, cigarettes. Jesus, I literally wrote that on a schedule at some point when trying to come back to life. The memory and confusion. It’s been around. I hear after getting off them, you should be 80% better in 6 months to a year. I can only hope. I’ve also been mostly on antipsychotics for the same length of time. I hope things get easier. My skin looks terrible too. I relate to everything!! I’ve never had my face look so terrible. And… I never could see much into the future, but I’m journaling and trying to plan. Also, I don’t have friends. I am a lone wolf. Nobody can understand this crap. I’m done trying to explain. I’ve also had many life saving surgeries and learned a decade ago that most people are selfish aholes that don’t want to associate with sick people because it forces them to confront their mortality. Anyway, I’m curious to see how many of you are doing now!!
Bebe, THANK YOU for bravely stating your symptoms. I can VERY much relate: “I’ve gone weeks without bathing or even thinking of it.” WHY is this happening?? There’s part of my brain that fully understands how/ why to maintain proper hygiene (bathing, washing hands, brushing teeth). Then there’s some sort of blockage in my brain that cannot connect the NEED with the ACTION. I can and do go VERY long without bathing or brushing my teeth. I’m disgusted by myself but cannot figure out why I have become unable to maintain hygiene. Again, I go back to what you said, “I’ve gone weeks without bathing or even thinking of it.”…..”Or even thinking about it”. YES. Exactly. I desperately NEED to get my daily life back on track but cannot figure out where exactly the issue is occurring.
OMG! This is so weird but I am in withdrawal now (First week down) from Pristiq. I was only on it for a few months after previously being on effexor. I kept telling my doctor I feel like a passenger in my own body, we both thought it was depression so my dosage kept getting upped. But then it would get worse, however when we started decreasing my dosage and adding in Vyvanse instead, I started feeling like my old self again. I had motivation to do things, I didn’t want to just sleep all the time. I’m now in withdrawal and experiencing some pretty odd withdrawal symptoms that lead me to this page. How crazy though that you have such a similar story. Also FYI my therapist said she has had a lot of her clients say they had the same feelings while on pristiq. Makes me worry for others on the drug, because I was struggling and my husband kept telling me constantly he was worried about me. That I looked like I wasn’t present in my own life 90% of the time. I worry there are others feeling the same way….
Well that was very interesting to listen to what you had to say about *KLONOPIN*
When I returned home from VIETNAM IN 1969 I NOTICED I COULDN’T HANDLE IT VERY WELL AS TO SAY MY GUILT TRIP STARTED ME TRYING AN ASSORTMENT OF DRUGS! I GUESS I WAS THE *DRUGSTORE COWBOY*I’M SORRY BUT I’M TIRED NOW BUT WOULD LOVE TO CONTINUE SOON??
I would like to share some weird phenomena and signs/symptoms observed during the course of my protracted SSRI withdrawal period which has lasted almost 12 years without much improvement.
Immediately during the four month tapering period and after:
– Hair turned lighter as if I had put bleach in it which I never did. I also noted that it couldn’t be dyed – it simply wouldn’t absorb hair dye and was also very difficult to dry with a dryer.
– A glue-like substance oozing from my fingertips, chest area, under my feet and on my face. It caused intense irritation (redness, pain, burning, itching. It later dried and turned into a more rubber-like substance which is still there. The skin is now very tight, rubbery and thick and doesn’t absorb creams or lotions. When I went for a massage, thinking it would feel good for my contracted muscles, the massage therapist said I had strange skin on my back and said that “it feels like dried silicone” (which by the way is what I myself have associated it with). i still have the rubber-like skin and haven’t seen any improvement in twelve years.
– very short of breath and coughing up little pieces of what seems to be the same rubbery substance that is in my skin.
– Very fast-growing fingernails and eye lashes.
. Loss of balance which is getting progressively worse. I sometimes just suddenly fall over (always to the left)
– Muscle contracture on left hand. Fingers curled up towards the palm of the hand.
– Tight, stiff, twitiching and vibrating muscles all over but unlike many other withdrawal sufferers I’ve had next to no or at least very little pain.
– Right ear hearing loss, left ear impaired hearing.
– Right eye staring upwards, also noted by optician and doctor. Problems closing my right eye.
Strange phenomenon: When I lie down, the muscles slowly start to relax starting from the shoulders moving downwards) and after about half an hour, I am almost symptom free except for the tight, strange skin.
Thank you for continuing to fight for awareness and for making an attempt to find an explanation if not a solution to our problems.
Here is just one of my thoughts in response to your many good points.
Tegretol is an inducer of the CYP 3A4 enzyme. Tegretol will increase the clearance of Valium and many other drugs. Increased clearance causes increased withdrawal symptoms. These can approach a C/T in degree. Yet Tegretol is prescribed to manage the risk of convulsions caused by some drug withdrawal protocols. This is only one example of the error.
For goodness’ sake why can’t a prescriber look up these things before writing the script? And why do the prominent experts ignore the most essential task in any withdrawal? That is identifying inducers and inhibitors of the drug to be tapered. A taper is not a taper when these enzymes are ignored. I will not name people, but these experts are causing the protracted withdrawal that they declare to have no known cause? One such writer said that symptoms wax and wane for no reason. Yes, that is correct, “for no reason”.
We can do better, and today independent people are doing it. The devastating fact is that today we can trash the old nonsense and create better withdrawal experiences while still not having a clue to what to do for those already off the drugs and still in the throes of withdrawal.Open discussion and idea sharing have had a far more beneficial result than looking for cures in the traditional places.
So many of us feel acutely for you. Many will continue the quest for valid response to the scourge. The time has come to avoid protocol and start reasoning.
Hi J.Hill, Wow you are absolutely spot on!!
I agree with everything you just wrote. The only problem is your response may have been written in Greek. 99% of the people using this forum are not medical professionals. If your true intent is to be of help to somebody on this forum, then for God’s sake, use layman’s terms so everybody can understand what it is you are trying to convey.
Some of what you describe reminds me of an autoimmune disorder called scleroderma. I haven’t heard of it in conjunction with psychiatric drugs, though. FYI I’m not a doctor or anything like that.
Scleroderma is exactly what I was thinking, too.
Sounds like some kind of change to your connective tissue. Hair, skin, even eyes have collagen matrix.
Do some research on fascia.
Forgive me if I’m on the wrong track here…
Many years ago, I read about symptoms that sound almost identical to yours in connection with burst or leaking silicone breast implants. As these descriptions became more plentiful in the media, other stories emerged about women who’d have their implants removed but were dogged by the symptoms for a long time afterwards.
Fortunately there were also stories about seemingly miraculous health recovery after the removal of implants.
Personally, I have Aspergers (a condition that MAY be connected with hiccups in chromosome 22 (DiGeorge Syndrome or something similar)) – My hair is “funny” in that it is very fine but heavy and refuses to hold a curl, there is a LOT of it and it takes a long time to dry – every hair dresser I’ve ever been to had commented on this. – My nails are also very thin and brittle and I used to take a vitamin complex to make them slightly better. I stopped taking the vitamins and my nails actually improved.
Have you seen a doctor about this changes? It sounds a bit like scleroderma which is an autoimmune disease.
I can’t believe you described what I experienced with the rubbery substance that ‘dried’ on your skin which you could not get off!! You describe it exactly as it happened to me. I had quit klonopin cold turkey and was given an antibiotic for small intestinal bacteria overgrowth. When it all came to pass I was having major trouble with disorientation and delusions and when that stuff dried I tried to scrape it off and accidentally cut myself. Someone saw me doing it and called adult protective services and the next thing I know I am being forced to go to the psych ward where I earned many diagnoses because I described exactly what happened! They said I had somatic disorder (thinking you have an infection when it isn’t provable). I took the antibiotic with me to show them what I reacted to and asked them to call the doctor who wrote the script but they would not. They also said I was bipolar which I’ve never been but I did have extreme highs while I was there which dampened down to my normal composure at the end of my stay. At that time I refused to take any of their psych meds which caused them to retain me for the maximum of fifteen days. I felt unfairly committed and got my lawyer to get me out on day 13. Since that happened I have not heard of one other person wh9 had the same frightening experience so I’m extremely glad I read your post. It was absolutely unreal and my skin looked and felt like silicone but I have none in my body. I thought I was going to die because my skin could not breathe. The color is hard to forget because it’s exactly the same as a plastic doll. It’s five years later and happy to report that it has resolved, however a doctor reinstated me on klonopin and they detoxed me in five days. Now, once again, I feel like I am a walking zombie and have just returned from another psych stay in which I told the doctors that they needed to pass on the horror they see as a result of these drugs. First they blame the patient for taking what has been prescribed but it’s an injustice, in my opinion, to even go there. I lead a good life, was high functioning and extremely productive and well educated. Now at 63 I am living in an assisted living facility because I am so impaired at many levels. The weakness and dizziness make it almost impossible to do anything along with depression and anxiety. I hope somehow you read this post so you know you are not alone.
Well put Agneta! Experiencing all the symptoms described except the silicone or glue substance. My hair is falling out and what’s remaining is turning white.
The heavy, yet floaty feeling I have is beyond description. The tinnitus or ringing in my ears is overwhelming as if I have a bee hive in my skull. Legs and feet feel fuzzy. And yes, the curling of my fingers is
quite disconcerting. With the loss of balance in the mix, one would look at me and think I have dementia!
Maybe I do? Now, anyways.
You ever seen are been checked for scleroderma? I also have been a Klonopin user for 30 years. I have been through hell. Abruptly withdrawel. I have been accused of faking symptoms with I couldn’t quit spasms all over body. I was judged. Put in jail. U name it. I ha e for the last two years been trying too function. I was abruptly stopped off every med I was on. I was in jail for I’m serious that my neighbors said I was threatening then. Oh my God not true. I yelled at that because I could hear them screaming real horrible at there kids and I asked them to stop. I proceed to get in my shower and the police are at my door with a gun. Can you believe that. My neighbors lied and said I threatened there kids. Bullshit. Anyways I am arguing that it’s not true. I was neglected my meds. I was in complete psychotic break from reality I do not remember anything except pain. I didn’t j ow why I was there. I couldn’t even get up. I guess I just layed there rocking. They never did anything and I suffered 4 months in there. I was to I’ll to function in court. I had visits but I could not function. I am know 2 years later still trying to function. No have memory lapse my skin is tough. I had to literally try to sit up straight. My muscles are definitely so tense.. I had to constantly lay down the first year. I didn’t know the president’s name.bi didn’t understand how to do simple things. I struggle with neck pain. I felt like I have no muscle strength. I am not able to exercise really because I literally have stayed in my bedroom where I rent a room. I layed down and rocked me. Itching. I can’t do anything it seems. The Dr has done tests but I’ve been hospitalized for heart rythem problems. I can’t seem to find any energy. I stare at my t.v. I am not with anyone. All my supposed friends deserted me. I have all these symptoms and I am still not getting heard. I went through such bad psychotic episode and non stop seizures in jail and I was innocent. I’m trying to sue. . Dang skin irritations and so much more. I have no desire to be around anyone. I am trying to get better but I haven’t had much result. I’m so sorry but I can relate to every single one of all of your guys symptom’s
Have just read through the ‘topics’ section with great interest. I find that the majority of the withdrawal problems that are described there fit so easily into a picture of ‘dyslexia’. It will be very interesting to see how things develop here – who knows, maybe a spin-off will be a better understanding of dyslexia and other Specific Difficulties too! For years, I have wondered if the dyslexics among us could be more susceptible to adverse reactions to certain drugs. I’m sure that would make an interesting research project if only I were younger!
Good luck with this new addition to the Rxisk site.
Mary, what a novel thought! Just like PANS, now recognized by the US Government is believed to be linked to strep…I sincerely believe it is the polyethylene-glycol found in the top three anti-biotics used to treat the strep infection, not to mention liquid Tylenol, liquid ibuprofen and liquid Benadryl, almost all brands contain PEG. We are seeing tons of glycol allergies in youngsters, but rarely diagnosed. Polyethylene glycol is a CYP metabolized drugs. So…about 10% of the population are not able to metabolize these PEG drugs. Even more interesting is the fact that PEG is in about 80% of medications in miniscule amounts, used as an emollient, an excipient, all extended release drugs contain PEG. If you take several medications, your PEG levels increase…
I’ve haven’t seen a solid reference to back it up, but I’ve read in a couple of places that Asperger’s syndrome and antidepressants are a bad combination, associated with violence.
I was given Zoloft along with Ambien and Xanax to try to help with Xanax withdrawal. I have been told by two psychiatrists that the original Xanax withdrawal was caused by my GP overdosing me and not giving me any guidance on tapering Xanax. Both drugs that I had withdrawal problems from Xanax and Zoloft were originally only taken for a little over a month. However, I didn’t take Xanax every day and roughly took about twenty-five 1 mg pills over a six week period. I was not abusing the prescription since the prescription said to take 1 mg of Xanax every 8 hours as needed. While in withdrawal from Xanax, I took 50 mg of Zoloft every day as prescribed for thirty-two days. There were no positive effects with Zoloft. However, I had an overly alert (caffeinated) feeling somewhat like drinking one cup of coffee to much. I also had a strange sensation that felt like static electricity between my eyes on my forehead. Both drugs caused problems early on but were much worse when completely withdrawn.
The overall experience has been filled with misdiagnoses and additional drugging of other antidepressants and anticonvulsants such as Celexa, Trazodone ,Topamax and Neuronton. I have also had several MRI’s, EEG’s and a MRA with no evidence that any else is causing my symptoms. I have seen three Neurologist and two Psychiatrists among a list of other specialists and MDs. My GP has diagnosed me with withdrawal, my Psychiatrist has diagnosed me with Neurotoxic effect from the Zoloft and my Neurologist has diagnosed me with Neuralgia 729.2 Neuralgia, Neuritis and Radiculitis, unspecified. I have been clean from all prescription drugs for just over a year. I had over 14 symptoms but in this post, I will only concentrate on what Legacy effects I am still suffering from 3 years after being taken off of Zoloft by my GP without tapering.
The first symptom that I have is what I call an electric headache which is a burning, pressure and shocking sensation that is very painful. The electrical headache is like having a bunch of low voltage shocks throughout my head. At times, I would even call it mushroom head because my head was getting shocked by so many strains of electricity it actually felt bigger and like a mushroom. The shocking feeling is constant and really never stops. When these shocks are not painful it feels like something is crawling on my head and similar to your foot falling asleep. Other times it’s like my brain is kind of vibrating (maybe that’s why some individuals us the term “Brain Shivers”).
Other times, I will get a shock that is independent of the others and feels like someone is stabbing me with an ice pick through the head and eyes. This type of shock seems to be associated with quick eye movement. The pain will very throughout the day but always gets worse later in the day, closer to bedtime and especially when I close my eyes. Light touch of the head doesn’t seem to increase the pain and actually may help but a massage of the head actually increases or stir-up the pain. The shocks seem to be stimulating the muscle or skin tissue from inside the head and or body causing the pain. The only thing that seems to help a little with the pain is lots of sleep, watching what I eat and reducing my activity level.
Ice packs on my head at night do seem to help with the pain. However, the less sleep I get and the more active I am, actually creates more pain. Activities like driving and reading for a long time creates worse pain. Therefore, the pain gets worse, the more my brain is stimulated. The low voltage shocks will concentrate in different areas (end of nose, back of the throat, forehead between eyes and in the eyes, front part of the head and then the top of the head). Once they concentrate in these areas it’s more of a higher voltage shock feeling with severe burning pain and pressure/muscle contraction (at times the pain is so bad I can only explain it like acid is being poured into my head). I have also felt the sensation on the back of my neck and a couple times in my chest area.
The second symptom that I have is that my eyes are extremely dry and sore. I am also seeing floaters in my eyes of which my right eye is mostly effected. It’s almost as though the voltage/shocking is hitting my Retina or Optic Nerve. I started seeing the floaters after seeing arcs and flashes of light several times in the beginning of withdrawal from Zoloft. These flashes and lights where only evident when I had my eyes closed while trying to fall asleep. The floater in my right eye seems to change shapes. The shape will look like a C or backwards C, then other times it looks like an L, 7, a squiggly line or somewhat of a ball shape. I have been seeing an Ophthalmologist for what he calls an allergic reaction in my eyes (inflammation). However, an allergic reaction to what he doesn’t know. He has been treating me with various medications but primarily a medication called Cromolyn Sodium eye drops. When I told him about the floater, to my surprise he asked me if I had seen flashes of light and I said yes. The Ophthalmologist was concerned because he said that seeing flashing lights is a sign of a retinal tear. He did check my eyes and I didn’t have any signs of a retinal tear.
The third symptom is tinnitus. I personally hear three distinct sounds which are all high pitched, though some are louder than the others. The sound is like different sizes of glass jingling around in your head but with a much higher pitched sound. However, once in a while one of my ears will ring louder and make a high pitched bong type noise (I have heard this individually in both ears). The louder bong sound in that individual ear actually stops minutes later. Also, at times I only have ringing in my right or left ear. Other times for a brief second it seems like I go deaf and don’t hear anything at all and then quickly my hearing and the tinnitus comes back.
The fourth symptom is insomnia. Though the insomnia has gotten better over time I am still having a hard time falling a sleep and staying a sleep. It takes me about an hour or two to fall a sleep and I drift in and out of sleep all night long. Sometimes I don’t sleep at all and other times I sleep in shifts.
The fifth symptom is a light restless feeling along with jerking sensations. My psychiatrist believes this may be a light version of akathisia. However, these sensation have improved over time. The jerking is only a couple times a day now down from once every twenty to thirty minutes while resting or trying to fall a sleep. The restless feeling has also subsided to less than once a week.
I have recently taken a DNA test and my Comprehensive Parmacogenetic Report stated that I am a Rapid Metabolizer CYP2C19 *1/*17 and a Poor Metabolizer CYP3A5 *3/*3B. There is a red flag for CYP2C19 which states, consistent with a significant increase in CYP2C19 activity. Potential risk for side effects or loss of efficacy with drug substrates. CYP3A5 states, consistent with a poor CYP3A5 activity. This phenotype is the most common in the general population. Caution is advised when prescribing narrow therapeutic index drugs. Alternative drugs or dose adjustment may be required if CYP3A inhibitors or inducers are co-prescribed. Zoloft is a yellow caution sign on the report and an Evidence Level 2 drug for me that says use with caution. Celexa is red flagged on the report and is an Evidence Level 1 drug for me that says consider alternatives.
My story is a very complex one so I have left out a lot of detail to focus on the Legacy effects. I would be happy to discuss the other symptoms I had for roughly six to ten months if anyone is interested. However, I am mainly interested in discussing research that has to do with or explain these symptoms and any positive information in regards to withdrawal recovery. I feel like I have looked just about everywhere for a cure to these symptoms and the only real help to recovery seems to come with time. My Neurologist has promoted several drugs Amitriptyline, Tegretol, Gabitril and Lyrica of which I have not taken due to my Psychiatrist explaining to me that I may be sensitive to other drugs because of my adverse reaction and withdrawal.
I wanted to cry when I read your story because it is so similar to mine. I had an adverse reaction to Effexor. I was on it for only 5 days, suffered horrendously for weeks, tried to stop the suffering with Zoloft, but that only made me worse.
I have all the head symptoms you describe and a huge variety of other symptoms. Initially I was so sick that I thought I was going to die.
I also did a pharmacogenomic test. I am a CYP2C19 *17/*17 Ultrarapid metabolizer. I have heard this kind of horror adverse raction a couple of times now from Ultrarapid metabolizers.
I bet this is somehow related.
Sorry to hear you are going through these symptoms as well. Can you explain your head symptoms in more detail and if anything increases or decreases these symptoms?
As Laura, I am now going through withdrawals from Effexor. Even though I am titrating slowing, I feel as if I am not in my body and this drug has been the worst thing I have ever been on. I could not function at all !
After being on so many different medications for 40 plus years, I some times feel as if I have no choices but the price I pay for having to be
medicated is phenomenal.
Now in my 50’s , the medications are not working as they should and I have become resistant to the therapies of some of the medications.
This Effexor withdrawal has to be the worst thing that I have gone through.
Peg – I would go very slow with the taper. Though Celexa may have helped my psychiatric symptoms from Zoloft Withdrawal it was very difficult to taper once on it. The Psychiatrist tapered me for about a year. I had a GP tell me I could taper a little quicker and I started to get very agitated and I soon realized I had to go back to the schedule that the Psychiatrist recommended.
More information on my eye symptoms: Some of what I call floaters look similar to single celled organisms with snow in them (as viewing them under a microscope). My vision is also somewhat grainy in low light.
On Oct. 29th I went back to my Ophthalmologist and he looked at my eyes, telling me that there doesn’t seem to be any improvement with the inflammation so he put me on Fluorometholone Ophthalmic Suspension, USP) 0.1% one drop twice a day in both eyes.
After reading some posts on the Complex Withdrawal portion of the Rxisk website and viewing the class on youtube called Bioelectricity Introduction to the Nervous System taught by Pedro P. Irazoqui, I asked my Ophthalmologist if he thought it would be reasonable to do an ERG test on me. He was actually pretty surprised that I asked him about it so he asked me why. I explained what I had read and he said yes lets do it. So on Oct. 31st my Ophthalmologist among other tests did an Electroretinography (ERG) and a Visual Evoked Potentials (VEP). My understanding is that the two tests measure the electrical activity of the brain in response to stimulation of specific sensory nerve pathways. The tests are able to detect the slowing of electrical conduction caused by damaged myelin along these pathways.
The VEP test shows:
Amplitude Low Contrast 12.2
Amplitude High Contrast 15.1
Latency Low Contrast 132.8
Latency High Contrast 112.3.
Amplitude Low Contrast 8.6
Amplitude High Contrast 13.1
Latency Low Contrast 124.0
Latency High Contrast 112.3.
*The Ophthalmologist has remarks at Latency Low Contrast, which are Right Eye Delayed.
After the tests the Ophthalmologist asked me if my right eye had worse visual problems than the left and I said yes. I also told him that my Neurologist said that the shocking, burning and pressure pain I am describing in my head is similar to those that have MS. The Ophthalmologist said I do have damage and he believes that I have optic nerve toxicity. If this is correct, I think this could prove that my withdrawal maybe some sort of Neurotoxicity. What is really interesting is that the Ophthalmologist said that these tests can show damage that a neurological examination or even the patient would not notice. If this is true, even if you do not have visual problems similar to mine the test could still show damage.
What did he say about recovery from optic nerve damage?
I wanted to update everyone on my eye symptoms and diagnoses: My eye symptoms are still the same but the FML (Fluorometholone Ophthalmic Suspension) did help with the dry and sore eyes (inflammation) while I was on it. However, once I stopped the medication after two weeks those symptoms came right back. My Ophthalmologist had given me a referral to a Neuro-Ophthalmologist which I saw last week. The Neuro-Ophthalmologist really didn’t have anything to offer me except that I didn’t have Glaucoma and that I should see their headache specialist for the shocking, burning and pressure headaches. I spoke with my Ophthalmologist today and he clarified what he told me at our last appointment. He said that his educated guess (as I would put it) is that there is Myelin damage because the VEP shows that there is an electrical problem with my eyes primarily with my right eye.
The Ophthalmologist didn’t really talk about recovery since SSRI Withdrawal is new to him. He is a compassionate Doctor that actually listens to me. He says however, that I am teaching him. My understanding there’s not really a recovery per say (other than stop taking the drug) the test just says that something is wrong even if you don’t have any symptoms it will show that something is wrong. Doctors use these tests combined with other tests to help them in the diagnosis of a variety of pathologies (MS, Glaucoma, Toxicity …et cetera). I had an MRI which did not show any lesions which probably rules out MS and I had an image taken of my optic nerves which was run through a data base which probably rules out Glaucoma. If I would have had these tests while I was on the medication or just after the symptoms started, I would have had baseline data which I could have compared to another test in the future. At that time of toxicity, the electrical activity of the brain in response to stimulation of specific sensory nerve pathways would have been more delayed compared to today since I am no longer on the medication. Simply, at the time of toxicity there would have been a spike but we don’t have that information to compare so that’s why I use the phrase that my Ophthalmologist is giving me an educated guess that there is demyelination of the Optic Nerves. However, we now have a baseline to compare to future tests.
I had cataracts in both of my eyes at an early age and had to have surgery because I could not see a thing. My Opthomolgist stated
that the cataracts were a result of ” Topamax” which I had been on
only 3 years for cluster migraine head aches.
The funny thing is that neither my General Practioner or Psychiatrist
would agree with this , though my Opthomolgist showed me a new report that stated the facts .
I also was diagnosed with kidney disease at the same time.
Since stopping the ” Topamax ” and being better educated on what to do for my kidneys, my kidney function is almost back to normal function. It took my eye Dr. to help me realize the effects of these medications, G.P and Psyc. still saying ” no” that they do not cause these problems….I think the facts speak for themselves .
I got this from a fellow-worker who was a nurse. Her ophthalmologist told her that a rough benzo withdrawal tends to weaken small blood vessels. It was not taking the benzo but tapering it that damaged.
I had no known risk factors for retinal tear, but it happened to me. It bled too much to clearly see the tear. It was sealed by LASER three hours after vision began to fail. Today In have a scar. At first it was a black dot in the visual field. Three months later, my brain had adjusted the visual input so that I no longer “saw” the blank spot.
It had a decent ending, but when a LASER is used in the eye, complications can occur. Bottom line: I can see. Without quick treatment, this would not have been the case.
Now there was a klonopin victim who did the four semesters to be a Mental Health Counselor. She was a cyclist. She had a stroke while riding her bike. It left her 50% blind. About a year later she was cycling again. She had an “accident”. The police reported that she appeared not to have seen a pedestrian, hit him, traveled about 20 feet more, and fell over to the ground. The news reported that “she died of her injuries”. Did she?
Did she really have another stroke, continue to move while blinded, and die of a stroke? Was that stroke caused by weakened small blood vessels caused by her seven horrific Klonopin withdrawals in detox?
Does a bike-rider die of injuries from falling over while barely coasting?
Peg – it seems that most doctors don’t want to veer from the herd. I had a Neurologist tell me that side effects are overstated. It’s bizarre at best how I have been treated by several of my doctors. However, when it comes to Topamax I was only on it for several months (about six months after my withdrawal) and I don’t remember having any problems with it. My Neurologist thought it might help with the shocking, burning and pressure headaches. This was my first Neurologist and to give her credit she did tell me that the drug could cause increased eye pressure.
J.Hill – my Xanax withdrawal was bad but not as bad as the Zoloft withdrawal. I literally went from the frying pan into the fire. However, what is interesting is that in my first MRI the Neurologist found what the Neurosurgeon called “Undeveloped Blood Vessels” which he said would not cause the pain I am feeling nor the tinnitus. He advised that I come back in six months and have another MRI. That MRI didn’t show any changes so he recommended I come back a year later to get another MRI which I should be scheduling soon. When I go back to see him I am going to bring my VEP and ERG test to see if there is any relationship to what they found.
So I went back to get my yearly MRI for what the Neurosurgeon calls “Undeveloped Blood Vessels” which is possibly a Cavernoma. The Neurosurgeon knows about my Xanax withdrawal and Zoloft withdrawal. In fact, he told me about three years ago to read The Anatomy of an Epidemic. He said that he has seen others with similar problems from withdrawal of these drugs. He also said that basically medicine has not caught up with this problem. He explained to me that his belief is that this withdrawal is not an anatomy problem but a functional problem. He explained it to me as an orchestra playing music where several of the musicians were playing out of sync. In this example the neurons are these musicians where some of the are out of sync. Thus, the firing of the neurons need to synchronize. He told me that I needed to go to the Brain Treatment Center. They use MeRT-Magnetic e-Resonance Therapy. I don’t know much about it yet but MRT is a procedure that pulses energy from magnetic coils into the cortex to realign and synchronize the firing of neurons in each patient’s brain depending on the condition.
MeRT-Magnetic e-Resonance Therapy did not help and did not make me feel good at all. I would not try it again. I took another VEP and ERG test via my Ophthalmologist which the VEP looked worse than the last test. I really wish I could find a doctor that could really explain these tests results to me. My Ophthalmologist stated that there is no damage to the optic nerve but that it’s a functional problem. I also went to another Neuro-Ophthalmologist at the request of my new Neurologist that is a headache specialist and the Neuro-Ophthalmologist said that the problems that I am experiencing are not in the eye itself but in the brain. I am so sensitive to medication now I can’t even take antibiotics without problems. I have listened to at least seven books on these topics, read all kinds of papers on these problems, watched all kinds of youtube videos on these problems, I am in groups and on websites that speak to these problems, I have a great psychiatrist trying to see me through these problems but there is no information on how to survive this financially. Doctors that create these problems can’t help you and will probably hurt you worse with their solutions. I have even heard of doctors making claims about their patients, that they can work even though these victims can barely function causing them to lose their disability insurance. I have seen others that have paid their disability premiums for years but the insurance company looks for every loophole possible to deny them there well deserved benefits. You can’t even get a lawyer to take your malpractice case even though it is obvious that the doctor created the problem. If you are lucky enough to find someone to take your case by the time you are mentally able to find that someone the Statute of Limitations is up. Someone needs to write a book on how to survive this financially.
Hi, I know your post is old but you have described the head pains I’ve been having for the last month. I took zoloft for less than a month and these symptoms started while I was on it, increasing when I stopped. My email is email@example.com I would love to chat and am curious to see if you’ve made a recovery.
This thread is a little old but I wonder if you have found relief from your conditions. I have similar head,eye, and tinnitus symptoms
Hi Jerry! i know its been a long time. I hope you are well. Just wanted to find out if your symptoms have disappeared and when you felt improvement.
Migraine at its start can cause a bright light in the shape of a letter C in your right eye, which slowly grows as the headache gets worse, then disappears. (no drug involved)
I wanted to add an observation about a feature of withdrawal that is, for me anyway, one of the most distressing. I have only seen it specifically discussed on Surviving Antidepressants (SA) and want to make a request that this new forum bring it up and discuss the possible biological mechanics around it.
Someone in the SA forums dubbed the phenomenon “neuro emotions”. This is an oft-reported symptom from both benzo and SSRI withdrawal. In the broadest terms, it is a clearly over-exaggerated emotional response to negative thoughts, so exaggerated that one’s rational mind clearly understands there is a physical component driving it.
I’ll give an example as I’ve experienced it: the other day, I was making spaghetti sauce for dinner and accidentally opened up the wrong can of diced tomatoes. Upon realizing this, I immediately felt a profound sense of both failure and impending doom, as if this minor error represented some final failing of my self-worth and that, as a result, some horrible end will befall me. This was an instantaneous reaction to this discovery. It had a kernal of truth – as we all feel a negative response when we make mistakes – but the disproportionate cascading emotional reaction was so patently disproportionate to the actual severity of the “error” that my frontal lobes/rational self knew it could not possibly represent how I really felt about the situation.
As I experience this repeatedly, I notice that it is directly part of the brain associated with immediate reactivity. I often experience similar responses to presentation of unexpected events/change (regardless of whether they are positive or negative). I especially experience this whenever I think of something in the future that I have to remember to do – regardless of how insignificant the task. I suddenly feel like shrinking into a ball and conceding that I am unable to do this basic chore. However, re-running the thought after that reaction usually produces a less intense response. And it almost never prevents me from doing whatever task it was. As the sympathetic nervous system regulates the fight/flight response – our immediate responses to threats in our environment – the symptom must be associated with the biology of that part of our nervous system.
I believe the sympathetic nervous system has, in its natural state, “chemical sentries” that tamp down responses to non threatening changes in the environment – that enable us to distinguish between actual menace and benign change. Whatever chemical apparatus is involved with that defense mechanism is seriously jeopardized by what ever disregulation is occurring in withdrawal.
Because of the immediacy of the reaction and the way emotions can make us BELIEVE in the reality of our experiences, the demoralizing aspect of this symptom can at times be very overwhelming. Using CBT type methods of analyzing and recognizing the irrationality of the response has limited utility for me as the emotions are still coursing through my body and mind and the rationalizing thoughts do little to calm the response at first. (I’ve used CBT methods before withdrawal to an overreaction and found myself far more capable of “calming down.”)
However, the fact that it was given a name and that others on the board responded with profound identification to this symptom did help immensely – as it provided much-needed sense of validation. What could further help in enduring this psychologically traumatizing symptom, is more exploration of the brain chemistry associated with this (dis) response and ideas for what could potentially aid in mitigatig the severity of the oftentimes overwhelming immediate reaction.
Thanks for your consideration on this topic.
Greg, thanks for bringing this up. I’m on SA as well and am thankful to have learned about neuro-emotions, since I have experienced exactly what you described. I also tend to be mildly agoraphobic, preferring to stay indoors rather than go outside to do activities that are actually normally pleasurable for me. I can’t pinpoint what the fear is, though; it’s just that I am more comfortable and “safe” indoors.
I have NEVER been one to have agoraphobia, before or during the 19 years I as on pysch drugs!
I should note that I went through protracted Effexor WD last year, not realizing it because the onset was so slow, and have since ended up on Remeron, which ultimately did nothing for me, and ultimately back on Effexor. Though I had been off Effexor for 10 months or more (can’t remember when I actually came off, memory is bad!), within one hour of taking that first reinstatement dose I felt 1000% better a sure sign of dependency! What is scary is that after all that time I was still do dependent that I responded like a junkie getting a hit of heroin!
The Remeron helped initially but then pooped out quickly and went up to 37.5 mg within a month out of desperation for relief. Probably too quickly for my system to adapt, but regardless, I think the Effexor WD trumped any benefit the Remeron could offer aside from sleep!
I’m very late to this discussion. Also on SA and Healing’s thread on Neuro Emotions still hits home 8 years after a yearlong taper off of Pristiq (after decades of polydrugging).
Recently, there’s been a tremendous amount of focus on the Vagus Nerve and its role is the Autonomic Nervous System and trying to reset or heal it to help the sympathetic (fight-flight-freeze) and parasympathetic (rest/digest) balance. I searched on “Vagus Nerve and antidepressant withdrawal” and it brought this thread up and I’m slowly reading through.
Serotonin appears to be critical to the Vagus Nerve function and I’m wondering if this huge “Wandering Nerve” may be a key to the bizarre, body-wide withdrawal effects.
I may be far behind obvious research and knowledge and, if so, I apologize.
I have significant cerebral atrophy and ischemic white matter disease (“a dementing process” ongoing) of undetermined etiology, though I have no doubt there’s connection to the drugs. I’m currently 56 and brain MRI in 2012 showed it first.
I’ll continue to read….
I hope you are feeling better since your last posting.
I ran into problems many others are also already discussing online, in regards to the psychiatric drugs.
Along with many children (Whitaker, 2010), I had the common withdrawal effects of an antidepressant (in my case given for smoking cessation, not depression) DSM-IV-TR misdiagnosed as “bipolar.” My withdrawal symptoms were almost identical to those which are very, very common, despite all my doctors swearing up and down that my withdrawal symptoms could never, ever be the result of their drugs.
I’ll take from Wiki’s antidepressant discontinuation syndrome site to point out just how very common these antidepressant withdrawal symptoms are. My personal antidepressant withdrawal symptoms, that were misdiagnosed as “bipolar,” were:
“flu-like symptoms …, sleep disturbances (… [powerful dreams]. nightmares,…). Sensory and movement disturbances have also been reported, … electric-shock-like experiences in the brain, often described by sufferers as ‘brain zaps.’ Mood disturbances such as … agitation are also reported, as are cognitive disturbances such as confusion and hyperarousal.” (My “hyperarousal” related to disgust at 9.11.2001, a recent at the time, and real “attack,” however.) I also dealt with weight loss and an unusual increase in libido, although that may have been due specifically to Wellbutrin’s claimed “happy, horny, skinny drug” effects.
It is truly a disservice to humanity to have a medical community that either denies knowledge, or has no knowledge, about the drugs they coerce and force upon others. Since my antidepressant discontinuation syndrome symptoms were misdiagnosed as “bipolar,” this means I also have information on withdrawal symptoms of the “bipolar” drugs.
Although, prior to discussing those withdrawal symptoms, I’d like to point out the flaw in the psychiatric logic of trying to “cure” the adverse effects of antidepressants by upgrading to “bipolar” diagnoses and drugs, especially since such behavior is now considered appropriate in the DSM5.
The problem with trying to “cure” the adverse effects of the antidepressants by adding the “bipolar” drugs, the neuroleptics, is that when these two drug classes are combined, they are medically known to cause a toxidrome called anticholinergic intoxication syndrome. Here is some information on that syndrome from drugs.com:
“Agents with anticholinergic properties (e.g., sedating antihistamines; antispasmodics; neuroleptics; phenothiazines; skeletal muscle relaxants; tricyclic antidepressants; disopyramide) may have additive effects when used in combination. Excessive parasympatholytic effects may result in … the anticholinergic intoxication syndrome … Central symptoms may include memory loss, disorientation, incoherence, hallucinations, psychosis, delirium, hyperactivity, twitching or jerking movements, stereotypy, and seizures.”
This points out that adding a neuroleptic to an antidepressant (and in my case, to antidepressant withdrawal symptoms) can actually cause “psychosis” and “hallucinations.” Symptoms which almost every doctor / psychiatrist will automatically assume to be positive symptoms of “schizophrenia” or “bipolar,” rather than the completely iatrogenic anticholinergic toxidrome.
Withdrawal from the “bipolar” drugs, I found, does result in what’s being called a drug withdrawal induced “manic psychosis.” About 6 months after being withdrawn from the “bipolar” drugs, I became quite “manic.” I’d wake up and dance for an hour or two, then go for long bike rides, and car rides, or garden for hours on end. I also managed a complete renovation of my home during my drug withdrawal induced mania. I had an extremely overactive libido as well. I lost about 10 pounds. In my particular case the “psychosis” was similar to an awakening to my dreams or subconscious thoughts, mixed with a mid-life reflection on all the people I’d known in my life. I was lucky, my so called “psychosis” / awakening was actually a really cool, super serendipitous, lyrical libretto love story type of awakening to the concept of the “collective unconscious.” But I do know for many, a drug withdrawal induced manic psychosis can be a very bad experience, too. But neuroleptic withdrawal induced “manic psychosis” is not a bad experience for all people, unless of course, it results in a repressive, violent, dehumanizing, massive forced drugging hospitalization.
I am very grateful you are trying to capture truthful information on drug withdrawal, and do so hope the medical community will wake up and learn they have been, and still are being, given a lot of misinformation by the pharmaceutical industry, the APA, and even within their medical journals.
The new site is very encouraging and states all the things that we, Di, Ruth and Me, had and are going through. In 2010 my potassium was 5.4 and I was told to cut out potassium foods which are high, which I did and its now down to 4.4 Early in w/d I ate a banana and it made me so dizzy I had to lay down for hours til the effect passed. A couple of months ago Di ate banana and she was really ill after so it seems that your bit on bananas and potassium is very relevant to us. Many thanks for your continued help – See more at: http://wp.rxisk.org/tracking-down-the-cause-of-withdrawal-and-pssd/#sthash.FPXEMwzE.dpuf
Well – here goes. Not something I’ve told any medic.
I took a bunch of antidepressants (all sorts, from tricyclics to venlafaxine) between 1998 and 2003. Plus temazepam and then diazepam – now on clonazepam (1mg) and 3.25mg zopiclone. Also had lithium for a while in the early 2000s, a short burst of carbamazapine, and lamotragine for about a year, in the mid 2000s. Some hefty doses of chlorpromazine from 2000-2001. Olanzapine was my main drug, taken at 20mg for 11 years from 2001 till 2012. I tapered off very slowly (details in the Sally’s story/Back in Olanzapine Waters).
So, I can’t link what follows to any particular class of psychotropic as I’ve had ’em all.
I initially assumed the death of my libido was due to depression and as it happens felt too ill to care. Then I assumed it was the drugs. But, shortly after finishing the olanzapine taper – it kind of came back. Huge surprise – but then it rapidly turned into something else: an appalling persistent genital/clitoral arousal which was as far from pleasurable as it’s possible to imagine. Nothing whatsoever to do with desire, just the worst kind of sensation ever. Googled the symptoms and came across PGAD. Exceptionally rare in women, apparently – but only I guess because there will be many women like me who would sooner die than discuss it with any doc and have it dismissed or misinterpreted. And clitoral priapism is somewhat less obvious than in the penis. So, tried to manage it by avoiding any heat in the relevant area, which triggered it, as did sitting in the car, tight jeans or the cat sitting on my lap. When driven to distraction – used a pack of frozen peas, or ice, wrapped in a tea towel for as long as it took to dampen things down. I assumed it was a vascular/nerve problem connected to the drugs.
Now here’s a thing: an orgasm for me will often temporarily relieve some of the persisting legacy effects, especially feeling ill, imbalance, bad temper, fatigue. Possibly something to do with a dopamine ‘rush’? But – about 24 hours later, post-orgasm – all those legacy problems are horribly exacerbated, sometimes for several days – up to a week. Particularly the balance problems and fatigue. Something to do with the effect on the cerebellum?
Thank you for posting this Sally. I have experienced something very similar post Escitalopram withdrawal. I thought it was due to the Mirena coil!
I too was not unduly affected by sexual side effects. My libido was affected whilst taking the drug and achieving orgasm required far more stimulation than should be necessary which resulted in bladder infections.
A late effect for me in withdrawal, but not an unpleasant one, was that I would experience an intense rush of warmth (blood flow to the genitals) and a feeling of arousal which would alarmingly and quickly mount to orgasm (not always) and then quickly dissipate. I still get it now, 7 years on, but it’s weaker.
It doesn’t come on “appropriately”. I could be driving, shopping, otherwise occupied – not even thinking about sex at all and wham! It’s definitely abnormal as I do not get aroused in Sainsbury’s usually when choosing potatoes or even courgettes for that matter! It’s also so fast. In a matter of less than a minute, aroused, feeling of warmth and blood flowing to the tissues, feeling of imminent climax, then it goes.
I’ve never reported it because it’s not unpleasant! I did tell my therapist, and he looked so bemused I decided to keep quiet about it after that. I’m glad you shared though. I thought it might be part of the menopause!
Sounds like a form of peripheral neuropathy. You’ll just have to wait it out and hope that the neurons that connect to your genitalia heal over time. Most PSSD is a form of neuropathy, damaged neurons.
I just read on this site about PGAD – is this what I’m experiencing?
I’d really like to know. The symptoms are not giving me a bad time as they’re inappropriate but not unpleasant…but I need to know if I’m still affected by this drug after 8 years.
Is this how PGAD manifests?
This is probably on a continuum with PGAD. You fortunately don’t have the full-blown thing. But is what you have an after-effect of antidepressant you were on – I would say yes it is.
There is another aspect to this – do people who take an SSRI ever go back to normal sexually? A colleague of mine put it like something like this in connection to PSSD but the same likely applies to PGAD also:
1. Lots of people talk about suffering from a whole variety of legacy effects, but they say nothing about PSSD or claim that they don’t have it. It seems unrealistic to me that they can have an array of ongoing symptoms, yet their sexual function has apparently completely recovered and is in exactly the same state as before they took the drug. Is it possible? – yes. Is it likely? – no.
2. There’s almost always a caveat with claims that people returned to normal. It goes like this – “It took a few months for my sexual function to return to normal, but now it’s fine and sex is great again, and I don’t have any lasting effects from the drugs. Sex isn’t quite the same as before, but that’s because:
a) I’m not as fit and healthy as I used to be
b) I’m a smoker
c) My life priorities have changed
d) I’m still on a journey of spiritual healing and recovery
e) Something else
Several months ago RxISK had comments from a guy who claimed recovery from PSSD was possible. A couple of months later, he was back on the forum saying that sex just wasn’t the same as it used to be and that he’d perhaps been trying to convince himself that the situation was better than it actually was.
3. If someone couldn’t orgasm on an SSRI, and now they can after stopping the drug, I think it’s easy for people to think they’ve recovered. Typically, sexual dysfunction is usually thought of as “erectile dysfunction” for men, and “lack of desire” for women. But PSSD is more complex and so I think it’s more difficult for people to realise that things aren’t the same as they used to be.
4. I recently came across a magazine article on the web. It was a woman talking about how she’d rediscovered her sexual function after coming off antidepressants. She was absolutely thrilled that everything was back to normal and referred to once again enjoying “mind-blowing orgasms”. Oh well, I thought – no hint of PSSD there. Then, towards the end of the article, she casually said that she could no longer orgasm from masturbation, which is something she could do before the drugs.
let’s begin this effort.
Good luck to us
Regarding that PSSD and withdrawal syndrome is caused by dysfunction of Ion channels,I found this research group which can help us. http://www.ionchannels.dkf.unibe.ch/
Someone who is more experienced on Ion channels could contact them for help.
In early w/d I would get a lot more dizzy spells than I do now, still get them. I used to eat a packet of crisps and felt a lot better. On reading I found that it was the salt. I did try putting salt on my tongue and then rinsing my mouth out and for about 4 days I felt so much better, then found that I was needing to do it more each day to get the same effect, so stopped doing it.
It never made all the symptoms go away but it made everything more bearable.
I am not sure if this is of any use,hypoxia regenerates damaged peripheral nerves
Master Gene Orchestrates Regeneration of Damaged Peripheral Nerves (OCTOBER 30, 2015)
Food for thought:Calcium channels,antioxidants,high-intensity exercise
http://www.medicalnewstoday.com/releases/301920.php (3 November 2015)
Im not going to post the whole story as many on here probably know my name but I’ve suffered tremendously since stopping 8 yrs use of 30mg Lexapro. My GP and Therapist had me taper in 2-3 months. They wanted me to taper faster but I stayed at 20mg for abit. When I hit 5mg my body went into shock. I had pain and discomfort through the roof in my stomach. My doctors failed to connect the dots and I suffered. I tried to work through the pain but I was experiencing too many side effects. Akasthisia, Pain, weakness, malaise, vivid dreams, activating thoughts, insomnia among many others it eventually wore me out and I crashed after 5 months of trying to hold down my Job that I loved so much. I was even more let down when my doctor’s told me its all in my head and that I don’t qualify for short term disability. In the last year ive been robbed of everything I love. I cant work, exercise or enjoy life yet and I am getting zero income. I switched doctors with no better results. My story is very similar to many and Im sure every day new people are finding themselves in the same predicament. The good news is that after a year things are slowly but surely improving. From the support of the forum surviving antidepressants I have read stories of others who have gone through hell but are back to normal and have regained there life. This took tremendous patience and time usually within 2 yrs but sometimes 3, 4,5 years later but I am hopeful and determined to get mine back aswell . Its a terrifying experience for anyone because the majority of us are told these symptoms don’t exist. Its like being in the Twilight Zone. Pharma companies have blood on their hands and ignorant uneducated doctor’s continue to compound this problem. Its a scary world we live in. Making a trip to a psychiatrist office could be the most dangerous thing you could do.
Goodluck RXISK team and I hope one day the future generations can be saved from this terrifying experience.
My withdrawal effects came in cycles over many months. Many have been difficult to understand and explain. They included the following:
Symptoms following a 2 week taper of Escitalopram 10mg:
– highly volatile mood (tears, tantrums and tiaras – the works!)
– intense anxiety leading to paranoia
– rages which came out of nowhere
– erratic driving
– feeling like I’d lost my mind and was out of control
– suicidal ideation (not present before)
– dissociation (felt like I was outside my body)
– cardiac rhythm disturbances (bradycardia, skipped beats, conduction issues)
– paraesthesia (tingling, sensations of a dead arm from elbow to hand, numbness, burning mainly in extremities – hands and feet. This has persisted and is intermittent 7 years later.
– severely restless legs for years
– a feeling of internal shakiness and tremor (not anxiety)
– dream disturbances preventing continuous sleep. Whizzing, flashing images going through my brain which I couldn’t process. This went on for years and only stopped 2 years ago
– brain zaps and feelings of brain paralysis (very brief). These went on for years. Last brain zap about a year ago.
Jaw & facial nerves/muscles:
– muscles under my chin knotting up, preventing swallowing (intermittent)
– a lack of saliva (intermittent)
– involuntary tooth grinding
– sinuses swelling when upset and blocking nose completely
– nerves in nose twitchy
– jaw stiffness
Drug reactions & reactions to invasive procedures
– leg stiffness preventing walking
– inability to co-ordinate limbs when walking
– jerking limbs
Dietary & gastro-intestinal:
– reaction to the BHF diet (felt very unwell and unable to tolerate the reduction in fat and calories)
– feelings of blood sugar clearing from my system too fast and intense hunger/shakiness
– nerves in nose still twitchy and sinuses still swell excessively
– intermittent finger numbness at the tips – with cold and stress
– intermittent toe numbness with burning feelings and tingling (not severe)
– cardiac issues – bradycardia
These are already on file with you David, but I wanted to participate.
My previous post relates to 10 mg Escitalopram and later doses of 10mg Citalopram. Sorry forgot to mention.
I have just read that gentamicin is an “inhibitor” . … not sure what this means?
Whilst I took this drug for ear infections my psychiatric symptoms were increased. They stopped when I stopped taking it. Not sure if this is relevant?
The other drug I took which seemed to help was a calcium channel blocker whilst in hospital. I forget which one, but I was placed on it for a very short time. I remember feeling a little better, but couldn’t be completely certain as I was on other several other heart drugs at the time and they were being substituted and changed around.
I mention in case it is relevant.
This is exactly the kind of comment that is relevant. We need others to comment in the same way and then someone needs to spot the common thread if there is one
there is some evidence that SSRI withdrawal has to do with epigenetic changes and/or mitochondrial dysfunction.
Also,there is a research that says even peripheral neuropathy may have to do with mitochondrial dysfunction. http://mitochondrialdiseasenews.com/2015/09/30/study-reports-peripheral-neuropathy-associated-mitochondrial-dysfunction/
Also,there is research that says that most epigenetic changes with cocaine addiction happen during withdrawal. http://health-innovations.org/2015/05/28/study-shows-most-epigenetic-changes-happen-in-cocaine-addiction-during-the-periods-of-withdrawal/
More info on this article
Also there is research that shows that illness of Gulf war veterans are due to use of nerve-agent pills due to mitochondrial dysfunction:
Two treatments which were respectively helpful / not helpful:
Helpful : ADDAction tried an electrical stimulation device which they use in drug addiction on me. I don’t have it’s name, but tiny electrodes were attached to my earlobes. It was strangely calming and helpful and I felt much better after treatment although this was transient and not permanent.
Unhelpful: Colonic irrigation for bowel standstill during withdrawal. This was not just constipation. Everything stopped. No gurgles, movement, nothing. The treatment affected my autonomic nervous system and vagus nerve which were already sensitised by SSRI withdrawal. Symptoms: nausea, dizziness, blood pressure dips, light headedness.
Maybe there is some link regarding mitochondrial dysfunction and epigenetic changes i.e. mitochondria may mailfunction due to epigenetic changes to their DNA and not due to DNA mutations.These epigenetic changes can be reversed with glycine supplements.The following research proves that,however the epigenetic changes to mitochondria DNA on this research has to do with aging and not with drug side-effects.Maybe its the same,maybe not.
Deeper Grasp of Chemotherapy-Induced Peripheral Neuropathy
http://www.medscape.com/viewarticle/854398#vp_1 (There are 2 pages)
” …investigators from Indiana University showed that changes in the brain — specifically, changes in cerebral perfusion and gray matter — seen on MRI scans were correlated with symptoms of peripheral neuropathy in women with breast cancer treated with chemotherapy.”
Thank you David, that makes sense.
Orgasm was occasional and just about possible – if disappointing – on SSRIs but off them it is now possible for me. It is not what it was and lacks the fireworks but I suspect those reasons are complex as you describe and may be age, menopause, relationship and/or sensitivity related. I don’t think there’s a definite correlation between cause and effect for me because my level of desire has been dampened by the “trauma” of protracted withdrawal and I can’t discount the effect of this.
The inappropriate “PGAD” spectrum feelings – have arisen since stopping an SSRI – Citalopram. I’ve stopped SSRIs over the years several times and have had many symptoms, but this is a new “symptom” and not one which I attributed to SSRIs. It has puzzled me, but it hasn’t been something I would report as it’s not severe and it’s effect is fleeting. Looking back it started when I finally stopped Citalopram and it has persisted, in waves, since 2012 with no symptoms for months at a time. I’ve recently been through some prolonged stress and I have experienced these “mini arousals” repeatedly and weakly over the last month after a long time with no symptoms. They are bizarre
The other factor at play for me is a Mirena Coil which obviously releases hormones steadily and locally. This was implanted about a year before I started having symptoms.
I assumed that this was the cause.
Account of Food Intolerances & Bowel Disturbances:
Bowel during SSRI treatment
Distended painful stomach, excessive flatulence, constipation.
Bowel in Withdrawal:
Bowel standstill (complete standstill – no gurgles, movement, nothing). Very slow recovery over many months and halted again on further courses of SSRIs. Still reliant on extra fibre and lots of water.
Food Intolerance in Withdrawal
Reaction to the BHF diet and the severe reduction in fat which this diet involves. I could not understand my reaction as I had dieted a lot pre-SSRIs and had never had a reaction to low fat diets. Felt very unwell, weak and nauseous despite a healthy intake of calories and food choices (apart from saturated fats). Had to report it to cardiac nurse and come off the diet who pronounced it impossible.
I found this article highly interesting how and why drug withdrawal happens and how to reverse side-effects. It has to do with cocaine withdrawal, but authors say this might be the case for all drugs. This is very interesting since is has to do also with SSRIs. There is a drug used (RG108) that reversed, maybe “cured” addiction.
“According to researchers from McGill University and Bar Ilan University, the genes found in your brain, specifically in the nucleus accumbens, may be reprogrammed following cocaine withdrawal and perhaps withdrawal from drug use in general”
“…and the nucleus accumbens is a well-known area of the brain linked to motivation, reward, and pleasure.”
SSRI have as side-effects lack of motivation, reward and pleasure.
Here are the links:
Thanks for posting this. I think the pleasure component of cocaine and related addictions is different to the addiction to SSRIs and benzos which becomes one of avoiding dysphoria rather than seeking pleasure.
Re: Sensory Disturbances
Auditory – I developed tinnitus / ringing in my ears during withdrawal.
Smell – My nose (nerves) and sinuses (swelling) were affected in withdrawal, but not my sense of smell.
Vision – I developed blurred vision and this went on for a very long time, but has since cleared up. I was also aware of “black spots / floaters” which seem to be very commonly reported. The blurring was intermittent rather than constant. Over a 7 year period the blurring reduced and has now stopped and so have the “floaters” which were prolific. The “floaters” appeared whilst I was taking the drug and continued in withdrawal. The blurring did not start until I stopped the drug.
The article on this site links the blurring to antipsychotics. It seems to be happening with SSRIs too. Maybe others could confirm this? I am now in my 50’s. The “floaters” and “blurring” have cleared up so they are not ageing related. I didn’t have any of the severe eye issues reported.
Touch – Tingling and sensitivity in extremities during withdrawal, fortunately no extreme pain. Legacy effect? fingertips now very sensitive to temperature – particularly cold. They become completely numb even indoors. The numbness also seems to come on with stress. Toes became tingly in very late withdrawal (after many years) and then intermittently numb too.
Taste – I don’t remember any taste disturbances.
It’s now been over 2 years since my last SSRI, and over 1 year since the adderall. It’s been about 18 months since I severely exacerbated my symptoms by smoking cannabis. I have not fully recovered, but I am slowly regaining my ability to function.
I still have the following symptoms:
1. anhedonia – Don’t really feel any emotions at all, mostly just a vague tingling and burning and numb feeling in the frontal lobe section of my brain. For example, someone could literally shoot my pet dog right in front of me, and I might not even move a little bit. It’s more of a pathological nerve damage sort of anhedonia than a depression anhedonia that one might experience in a very deep depression. When I try to force myself to feel emotions, I just get a vague burning sensation and a feeling that there’s just a bunch of cotton in my brain.
2. Depersonalization/derealization – This symptom was getting much better back before I smoked the marijuana, but after smoking it got like 3X worse than it ever had been before. MANY of the symptoms that I’m experiencing can basically be categorized under the umbrella of DP/DR, and it makes me wonder if a certain fraction of all patients are just severely depersonalized. For example, if one goes to a dpselfhelp.com forum and searches for tingling numbness, brain fog, parathesia, brain zaps, discoordination, etc, you find that many of these symptoms also occur in these people who have never taken and withdrew from an SSRI. Not sure what that means, and I’ve tried to address the DP/DR by doing emotional exercises, etc, but nothing really seemed to make a difference.
3. Trigeminal nerve problems, extreme eye pain, occasional eye spasms, light sensitivity, difficulty reading, tingling and burning all throughout my entire face, and clenching of the jaw. I whittled away part of my lower teeth over the last 9 months of extreme grinding just from the pressure in my trigeminal nerve pulling my jaws together. I also have visual snow, but this has gotten better with time and is now bearable (the marijuana made it absolutely scary, bright flashes of light everywhere with electrical lightning strikes of light occurring throughout the night). I sometimes get involuntary twitching of my face, and this occurs simultaneously with a sharp soulwrenching pain in the back of my eyes.
4. Tingling and numbness and burning in my limbs, and most parts of my body. Before I smoked the marijuana this symptom had mostly gone away to a “sort of noticeable” state, but smoking the pot exacerbated this one the most and I couldn’t feel my entire body – I couldn’t feel clothes on my body, and felt 100% detached from my limbs. For about 6 months I was in extreme danger of hurting myself if I were to, say try cutting carrots with a sharp knife and not being coordinated enough to prevent chopping off one of my fingers. This symptom has gotten much better, but it’s still quite bad. This symptom also flares up from time to time to the point where I still can’t really feel my limbs as well as I could before. But at least I know they’re there now. I’ve seen this symptom described before as parasthesia.
5. Migraine like headaches. I went to a hospital ER back in November and got diagnosed with “atypical migranes” after describing all of the symptoms to them that I’m describing here. I don’t buy that diagnosis – I think this is related to trigeminal nerve difficulties. This symptom has gotten better and continues to improve, but its painfully slow. It’s tough to parse apart the migraines from the trigeminal nerve issues.
6. Sexual dysfunction – numbness of the genitalia, and numbness feeling in my brain when I try to visualize anything. It’s like I got a lidocane shot into my nerves down there.
7. Memory issues, difficulty thinking, difficulty visualizing problems, difficulty using my imagination: This is probably the single symptom that is preventing me from holding down any sort of competitive job. It feels like I’ve been lobotomized, that’s the best way I can describe it – as if the nerves inside of my frontal lobe and cerebral cortex have been infused with a constant dose of lidocane. It feels as if my memories still exist, but I can’t access them because my nerves are all numbed out.
Overall, many of these symptoms are improving with time. I have found that supplementation of fish oil with a multivitamin has been very helpful in slowly improving these symptoms. I try my best to exercise, but fatigue makes this challenging. I eat a very good diet.
3 Final points before we part:
1. One point I’d like to leave any readers of my story with as a take home message is the critical importance of having money throughout withdrawal. It’s imperative that people understand that the most important factor that will determine whether or not you will survive psych med withdrawal/nerve damage/adverse reactions is having enough money or income or support from family members so that you can stay where you live, purchase food, and pay your bills. If the money runs out, this condition can become extremely dangerous and possibly lead to the loss of everything. I need not elaborate on the details, the implications seem obvious to me. The money does numerous things to help us heal, including 1) provide a good diet, 2) shelter, the 3) means of communication with others, 4) allows us to see alternative practitioners and consult with doctors – and 4) ultimately it lowers the stress of the whole experience. Not a great deal of money is required, I’d imagine 2-4k USD a month minimum, preferably more than that – one needs good diet, shelter, transportation, and some extra cash to pay for contingency related issues (such as accidents, etc).
This condition does heal with time, but it may take many years for that to happen – so it’s imperative to find a source of income to survive for 6 months to 5 years until we are able to work a job on our own, and support ourselves. Please do not underestimate the importance of money (and a responsible way to manage the money!) to survive withdrawal/nerve damage/adverse reaction.
2. A second and I think EXTREMELY important point I’d like to get across to readers is that even after healing from much of the withdrawal symptoms, the condition may never fully go away. The damage will be lingering in a sub-acute, non-noticable fashion. Experimenting with drugs, supplements, or leading an extremely stressful lifestyle will cause symptoms to return. I would imagine that situations such as general anesthesia, or other similar medical interventions could prove to be extremely dangerous for those of us who have been damaged by psych meds. Please be very careful. In my case, the cannabis caused my symptoms to get exponentially WORSE 9 months after healing back to a functional state. The assumption that after we heal we are “back to normal” is, from my experience incorrect. Do not underestimate the longevity of the damage to the CNS and PNS – the damage is long term – even if the symptoms do melt away.
3. Finally, and most optimistically:
There’s a large number of anecdotal success stories for people who have suffered from similar conditions located here on this website, I strongly encourage people to read these stories found here:
From glancing at these recovery stories one can see that recovery seems to take between 6 months and 5+ years – the majority of recovery appears to happen around the 2-3 year mark.
Good luck! We all need it!
I find your entire post interesting. First, I would like to comment on the importance of having money to survive Withdrawal. What I find odd is that in reality it is very difficult for those that are suffering from Withdrawal to find the money that they need and deserve.
The doctors don’t know or don’t want to believe that they and the medications are causing the harm. So, for those suffering from Withdrawal, that previously planned financially, by purchasing Short-term and Long-term Disability Insurance in reality are not truly protected financially because these same doctors need to certify this disability. How is the doctor going to certify disability if they don’t believe that they and the medications caused the harm? However, If you find a doctor that will certify disability what do they certify disability for (a physical or psychiatric disability)? Furthermore, Insurance companies will look to any loophole they can find to discredit this disability by saying that it is a nervous condition limiting the payment to two years.
It is very difficult for an individual that is suffering from Withdrawal to find a lawyer that will take on such a case to sue the pharmaceutical company or the mislead doctor. If this was an injury resulting from a disabling car accident caused by the same doctor lawyers would be flocking to your rescue with promises of this needed money for health care and long-term survival.
Financial Planners teach that we should save three to six months of living expenses for short-term needs and life’s surprises. They teach us to have Short-term and Long-term Disability Insurance to protect our income. However, with reality setting in how do those that have done the right Financial Planning (let alone the one’s that haven’t) financially survive Withdrawal that can last six months, five years or more?
I would be interested in discussing and collaborating with others on how to financially survive Withdrawal and Neurotoxicity.
Started to taper from Lexapro September 2015 after being on it for almost 15 years. Also taking Depakote and Adderall. I’ve been more tired, confused and emotional than before I started the withdrawal.
I was extremely lethargic, unmotivated and disorganized before beginning the taper. I had worked full time and participated in many activities before getting on any of these drugs and I wanted to find my way back to the person I was. As long as I’ve been on the meds, no amount of strenuous exercise or dietary changes seemed to relieve the relentless apathy. I started the taper because I had to do something. I couldn’t live the way I was anymore.
I also need to mention that I have Cerebral Palsy. It’s very mild. My speech is somewhat slurred. I have minor balance problems and my fine motor skills are slightly impaired. This does serve to add an extra layer in regarding withdrawal symptoms vs original symptoms vs symptoms of aging with CP.
I need help.
PSSD has had a big impact in my life after 1 year and 3 months of suffering their symptons and I just can´t manage anymore.
I can´t work, socialize or study. I´m too down and feel too anxious. I don´t sleep properly and my parents push me to the psychiatrist all the time. I have an appointment next week and I´m scared as he doesn´t believe about the condition and for sure he will put me on drugs again.
The first year after quiting, escitalopram erased my old anxiety but after this year all of a sudden anxiety and depression are hitting me too hard, and I have huge sleep problems waking up in the middle of the night with obssesive thoughts about PSSD.
I don´t think I can continue living like this.
I beg for advise: I need to know if there is a medicine that can help me to cope with depression but don´t worse my PSSD symptons or my chances of recovery. Can you please help me with this?
I would love to know how things stand legally. I was put on Effexor for bullying and work stress, with no warning whatsoever of the side effects. I was a fully functioning worker who enjoyed life except for the bullying.
Now I’ve been disabled with withdrawal for almost a year. I almost died.
I would love to sue my doctor . Many of the dangers (withdrawal seizures etc) were actually listed in the information for doctors that the pharmaceutical companies provide.
My doctor didn’t bother to tell me anything. The pharmacy didn’t bother to give me the leaflet. It didn’t even occur to me that the drug could be potentially dangerous, so I took them.
I wish there was some justice done for doctor’s negligent prescribing and lack of informed consent.
Thank you for engaging in this important effort of promoting research on protracted withdrawal, and for listening and believing in the life experiences of those of us who have suffered from this.
I would like to call your attention to a symptom that is very common, but rarely reported in the literature: SSRI-induced apathy. From everything I’ve read and my own experiences, this appears to be a dose-dependent side effect, but it is also very common in protracted withdrawal. To make things more complicated, for many people it becomes long term effect that can last for years after they are off the meds.
This is different than the numbing of emotion and anhedonia described here. It is related to motivation and initiative and akin to a “paralysis of will.” Even the smallest tasks take an enormous effort to be initiated.
Unlike depression, in which behavioral methods can increase motivation, pushing oneself to do positive things does not increase motivation. At times, it decreases it because it’s demoralizing to realize how hard one has to push or how tired one feels afterwards, and how pushing yourself to do it today does not result in it becoming any easier tomorrow.
It’s a very disabling symptom and I hope more attention and research will be dedicated to it.
Thanks for this – the distinctions between apathy, depersonalization,emotional numbing and anhedonia are all important.
What you describe is exactly what happened to me while taking olanzapine. I had the will, but not the way. Just couldn’t MAKE myself do the thing I actually, somewhere in my mind, really wanted to do – almost as though there was a missing connection somewhere. More a kind of frozen capacity to carry out an act – however small. Which I think is different to apathy – where you simply can’t be bothered to do anything – but there is no better word to describe it. As usual, trying to find the language to describe such complicated mental/physical states is impossibly hard – we need a whole new vocabulary. Preferably not using obscure Latin or Greek based terms (like akathisia) which no lay person understands…come to think of it – very few medics know what it is either.
Just found this in British Journal of General Practice, re SSRI related eye problems. It was a surprise as I hadn’t realised there is a well established link between sudden loss of vision and the SSRIS.
I believe there is a some evidence that points to deficits in the Caudate Nuclues in PSSD; According to wiki:
The caudate nucleus has been implicated in responses to visual beauty, and has been suggested as one of the “neural correlates of romantic love”.
Approach-attachment behavior and affect are also controlled by the caudate nucleus. Cats with bilateral removal of the caudate nuclei persistently approached and followed objects, attempting to contact the target, while exhibiting a friendly disposition by the elicitation of treading of the forelimbs and purring. The magnitude of the behavioral responses was correlated to the extent of the removal of the nuclei. Reports of human patients with selective damage to the caudate nucleus show unilateral caudate damage resulting in loss of drive, obsessive-compulsive disorder, stimulus-bound perseverative behavior, and hyperactivity. Most of these deficits can be classified as relating to approach-attachment behaviors, from approaching a target to romantic love.
In addition, the caudate Nucleus is associated with OCD. Many people with PSSD including myself have OCD which has become less intrusive since acquiring PSSD. This is consistent with the idea that functioning of the Caudete Nucleus may be impaired in some cases of PSSD.
Finally, I have read that damage to the caudate nuclues is associated with the apathy and emotional flatness that occurs in symptoms of Huntington’s disease. Apathy and emtional flatness are also commonly associated with PSSD
I dont think you are in the right road as reagards the “peripheral neuropathy therory”. The problem has to do with damaged receptors but we can’t find -unfortunately-the way to fix them.
It strikes me, reading all the posts (some new since I last looked) that a pattern of extremes emerges in protracted withdrawal: some people experience serious and ongoing genital numbness and loss of libido – some, like me, the opposite. Some people endure emotional numbing/apathy/disinterest – others (again, like me) serious emotional storms that descend suddenly, blow everyone and everything in my path away – then disappear. I wonder if this connects to the paradoxical effects well noted while taking antidepressants or antipsychotics? What is supposed to calm you down makes you violent, or instead of cheering you up – makes you suicidally depressed. Sleeping pills (particularly zopiclone in my case) that give you unsettled sleep and early waking. I noticed when I used to go on massive benzo binges (actually ODs – sometimes 100 x 20mg temazepams at a go) that far from knocking me out for days – I was awake for maybe 24/48 hours. Then I would kind of sleep it off. There seems to be a huge spectrum of experiences – which I guess makes drawing up a helpful, straightforward guide to protracted withdrawal much more complicated? Plus of course identifying what helps people get through. …
I have experienced withdrawals since starting medications many years ago. Some were very mysterious, and I recovered and others took a long time: It is possible that the diagnosis of my bipolar disorder may have been a result of Valium withdrawal, but I don’t really know. Here they are chronologically:
1. VALIUM– withdrawal leading to severe anxiety, cognitive disability, psychosis, depression;
2. CLONAZEPAM–one month withdrawal leading to cluster headaches, seizures, anxiety;
3.XANAX– after taking it for something like a year without discontinuation; anxiety, insomnia, panic attacks (paradoxically taken for panic attacks)
4. LITHIUM– a pharmaceutical mistake where the dose may have been too low, or the drug itself was old; I felt so well after 6 months as if I had never had bipolar disorder. Surprisingly, when I started to feel a bit manic, I re-dosed with a new Lithium dose from my old pharmacy and this led to severe “motor psychosis” where I had to walk as much as I could to get over this paradoxical anti-withdrawal.
5. LITHIUM– Lithium is a benign drug for many of my 35 years of taking it when I sometimes skip one (of the 3x per day). I really don’t feel anything. This time something strange happened. I forgot to take Li #1 of the day and #2 gave me a month and a half of withdrawals which I have described as the AXE headache in the past. I can only guess that my blood lithium had gone low from a previous missing a lithium and with this forgetting one again, i sufferred pretty serious withdrawals. I am OK now, but I was frightened that I would not recover. I also had trouble remembering, and a fuzzy cognitive state, as well as loss of balance. The headache was worse as it was a continuous migraine headache.
p.s. Before taking lithium I was given imipramine which fortunately made me break out in a rash and made me feel rather sick so it had to be discontinued. That was in the beginning of bipolar disorder treatment. This is just a note. Drugs are very mysterious, and as my husband says, psychopharmacology is the Black Arts. 🙂
The previous complex withdrawal website requested information on drugs which have helped or made protracted withdrawal worse. This post is relevant to the peripheral / autonomic neuropathy theory proposed on the previous web site and the drug nitrofurantoin..
I took this drug recently for a bladder infection. I had no current protracted withdrawal symptoms but was going through some cardiac treatment changes.
I was prescribed the drug in a divided dose four times a day. I had taken Escitalopram / Citalopram for many years and had stopped taking it in 2012 . I had autonomic nervous system effects from stopping the drug of a cardiac nature as well as all manner of withdrawal effects which were long lasting but which had abated well before starting nitrofurantoin.
One of the late withdrawal effects was tingling and numbness in my big toe. It came and went, and affected other toes too at times on both feet and also my thumb and two fingers next to it on my hands. The toe symptoms came on at night mainly. I had experienced arm and hand tingling, numbness during the height of withdrawal but it had been episodic and there were no lasting effects other than the occasional hand/toe tingling / numbness. I did nothing as the symptoms were not bothersome.
After taking Nitrofurantoin over 7 days in February. I quickly developed the symptoms associated with long term use – persistent cold, short of breath (mild), heavy chest. This eventually developed into a mild chest infection which became apparent when I was able to exercise again. I struggled with energy, standing, moving around for several weeks afterwards. I was unsure if it was a drug reaction or a cardiac cause. It eventually improved.
However, since taking the drug, the toe symptoms (peripheral neuropathy?) have returned and worsened. There are now occasional stabbing pains (mild but stronger than tingling) and further numbness. The symptoms are more frequent and not just confined to night time anymore.
A kidney function test has come back as normal (tested for a cardiac cause) and a thyroid test was also normal.
I read on the NHS website that this drug is associated with neuropathy after long term use. I used it for 7 days.
My question is : Could protracted withdrawal and previous antidepressant use be the cause of this more severe than usual reaction to this drug?…and could the increase in numbness and pain be associated with protracted withdrawal and your associated peripheral neuropathy investigations?.
Thank you SO much for this website. I very much agree with the sensory neuropathy theory. I have nerve damage in my pelvis, bladder, butt, hands, and feet from the SSRI taper and gabapentin taper. I am only 35–age 32 when this started and had NO neuropathic issues before the tapers. As for solutions I wish that I could say that some type of treatment has helped. I have gotten temporary relief (few hours) from some of the pudential nerve blocks but the results have been mixed. I hope that sometime in my lifetime we will make some headway on both prevention (stop putting people on the meds) and understanding what to do and why when people have adverse reactions. It would also help the emotional trauma of this all to get some indication from the medical profession that this is a very serious problem.
I am happy to offer some comments regarding coming off venlafaxine 150mg extended release caps (effexor) and my recent experience with starting duloxetine 60mg.
2 years ago I had an original prescription of fluoxetine for depression which was causing massive fatigue (wasn’t able to stay awake for more than about 3-4 hours at a stretch!). I saw a nurse prescriber who tried me first on 75mg venlafaxine then upped to 150mg, which initially, I must admit was brilliant and totally turned my life around.
Coming off venlafaxine after the two years was unsuccessful. It no longer offered remedy for my depressive symptoms and I was starting to feel confused and as if life was passing me by. However, when I attempted to taper off the drug even in minuscule amounts I suffered from a debilitating headache. When I attempted to half the dose or reduce it by 75% I felt like I had the flu. If I missed a dose completely, after about 24-48 hours I would feel so ill I was confined to bed. Within 4 hours of taking a quick release tablet of 75mg venlafaxine, I was able to function again and get on with my day.
My dr has now prescribed me duloxetine 60mg in combination with zopiclone 3.75mg which I switched on to overnight from venlafaxine with only a mild daily headache for about the first fortnight. The zopiclone is to remedy insomnia I was experiencing on venlafaxine.
This to me has been a good option as I have not suffered from the terrible withdrawal pains normally associated from discontinuing venlafaxine (effexor) and no brain zaps. However, I have noticed my moods have been very up and down (often over the course of one day), and I have noticed an increased desire for alcohol on duloxetine.
I have also noticed I have had a much heavier period (but no painful cramps),
increased aggression and lack of patience, motivation
However all in all I would say that I am feeling much better than when on venlafaxine. More positive, a little bit more energy.
I would like to add to my above post that one of the main reasons I chose to come off venlafaxine, and it appears I am still suffering from this!, was memory problems.
Prior to taking venlafaxine I had a pretty healthily functioning memory- and I believe my brain was working much better. For instance, my average weighted grade on my degree was 92.00 for the year prior to commencing venlafaxine and for the first year on venlafaxine it lowered to 68.00. For the second year of my degree on venlafaxine (this year) my grade is 58.00. So it seems my brain has just slowed down completely, become lazy. I function poorly in exams and despite lots of revision cannot withhold information the way that I used to.
However a factor which complicates this observation is that I did have a baby 16 months ago, which of course upsets your sleep and memory greatly!
I am in my twenties btw.
A lot of people have babies and don’t lose their memories… on effexor I could not find my way around was constantly lost… some other memory brain functions were extreme… I think it is the effexor.. to taper off get help from survivingantidepressants.org
A friend told me that when she was on Prozac she got weepy except on days when she’d had an egg for breakfast (she knew if she didn’t have the egg she would feel badly). I thought this was interesting and maybe the sort of clue Rxisk was looking for. Interesting in the least!
During the horrific protracted withdrawal i suffered after 16 years of prozac the only thing that would calm me down slightly was ” spoonfuls of Benilyn cough medicine.
Hi! You guys are a source of comfort. I’ve been on Fluvoxamine for 21 years. Got off Feb. – March 2015. The last 2 years I had a few severe tremor episodes. The docs didn’t know what it was. Then 2/15/15 I spent 8 hours in the ER with head tremors only to be told they didn’t know what it was. My GP next day said it was Luvox. Over 6 weeks he dc’d it. For 1-1/2 weeks I was fine and it all came back. Next he said Parkinsons or Parkinsonism. I said send me to a major med center. Saw a local D.O. acting in the neuro practice here. She was dumbfounded. Waited 3-1/2 :months to get in at a major med center. Wont tell you where cuz I don’t have good things to say. The doc there basically told me it was all in my head after a clear MRI and neuro tests. Depression set in and returning home the Battle of the Bulge began! No MD would or does believe this is SSRI related. The GP is so so about it. I’ll never go see another neuro doc. They think they are gods!
All this time many things have happened: tremors in the upper part of my body move around; feeling sick periodically; 2 falls; unstable gait; rubber legs; blurred vision; nystagmus; eye jerking; a short time of nocturnal hallucinations when falling asleep; heart palpitations. 6 months out things improved to less symptoms. Now 8 months out G.I. is affected and tremors growing worse again. I now know what I believe is true. I AM NOT NUTS! This is a withdrawal problem. You figure the brain is one of the most complex systems of the body. I’ve had OCD since age 14: been on Luvox 21 years, was on Triptans, Vicodin, and Phenergan for 16 years regulated for migraines. A brain is pretty complex stuff. It’s no small wonder something didn’t happen sooner! I had to prove to my GP that this was SSRI related. He’s still not convinced cuz the neuro doc isnt. My mainstay is my faith and my psychologist and my brother.
I’m working out of depression and focusing a day at a time now. I Sure hope somebody can solve this for us or at least prevent anybody else from it.
Hi. This is still me. I’m deeply grateful for this website. I’m 9 months into withdrawal as I said from those drugs. I got my medical records the other day and am horrified at the judgemental nontruths of my neurologist whom I promptly fired! I live one day at a time now with unmedicated Ocd. Depression, tremors are waning, and am trying to regain self confidence. Where in the name of Heaven did neurology go so wrong? I am amazed at all your stories here and on Dr. Healy other sites. You are my heros. Thank you for your bravery. It gives me strength.
[clumsy English warning]
As for antidepressants and neurofunctions, I swear I can hear my brain crying… I’ve been taking sertraline for half a year, then I withdraw it, was ok for a year, the ended up with paroxetine for six years straight. As I tried to drop the treatment in spring this year, first thing I noticed was that everything around me became way more lively, more interesting than before. Life itself turned to be more vivid. I also noticed personality changes – I quickly changed from mean b**ch who constantly looked down on people, seeing them as a nuisance to caring, kind and nice person. I’ve regained ability of love someone. Then, after about a month withdrawal symptoms kicked in… unbearable nervousness and depression so deep I almost tried to kill myself. Getting back on paroxetine gave me this one day of running around in circles (I couldn’t sit still, I’ve felt uncomfortable in my own body) and suicide thoughts (it was like someone was screaming: kill yourself, kill yourself, kill yourself, kill, kill, kill! right into my ear). This stuff still haunts me in my sleep. So I also had a history with Clonazepam, Xanax and trazodone to manage.
Right now, I’m dropping again. I’ve dropped trazodone from 75 mg to 25 mg, paroxetine from 40 mg to 35 mg. I’m still struggling with b**chy personality, feelings loss and ultimate feeling of boredom. Nothing interests me anymore for too long. Plus, my memory and cognitive functions are mess. It all got a bit better after paroxetine drop, but still…almost makes wanne rush tapering. Almost.
Reading about hair and skin problem gives me some answers. It may be not serious, but I noticed my facial skin looks slightly artificial and my hair are like arid hay, despite careful conditioning. I haven’t tried to dye my hair ever since therapy… I can only tell they still react to herbs (I’m using camomile to brew to accent my blonde).
This is different. GI seems to be the latest SSRI withdrawal problem. Already have had tremor, eye problems, palpitations. GI is mimicking Celiac, but not sure if that’s it as GP leaving and new doc on board. I guess my brain is one mess of short circuiting. If there’s more serotonin in the gut than the brain, it makes sense but can anyone tell me how long this goes on? I can eat about 9 foods: oatmeal, blueberries, Greek yogurt plain nonfat, almonds, meat, fish, carrots, broccoli limited, and brown rice. Not very exciting. Upper GI shows hiatal hernia I’ve known about and reflux. The latter was totally at bay before withdrawal. Another chapter….
I have been here before not sure when due to brain fog ect.
9 years + withdrawal from various ADs
Now MCS which presents and shaking jerking unable to walk or think when exposed to chemicals this could be pumping gas shampoo hair febreze perfume all types of cleaners insecticides the list is actually endless.
Symptoms changed and bounced around for 9 years one thing would improved only to be replaced by a different symptom. Other drugs I took I am sure caused more harm and prolonged the damage some where taken with the last AD… duel SAs at the same time effexor and celexa lipitor pushed me over the edge to some ad avelox sealed the deal.
Further treatment for infections with other quinolone drugs caused further damage continual wd…. increase in symptoms and worse functionality.
I had a severe adverse reaction to prozac 26 years ago followed by what I now know was a wd reaction lasting years which I believe caused me to be dx with chronic fatigue/fibromyalgia. I think this was caused at least in part by mitochondria damage… but am open to further understanding.
I have had PSSD for many years now think the protracted withdrawal and pssd link are a serious path worth pursuing.
I have looked at other drugs that are known to cause MCS chronic fatigue… like issues… hair loss drugs… floxed comes to mind.
I react to most drugs now have had anaphylactic reaction to a non quinolone antibiotic… my body brain is broken. I feel there will be a link found some common denominator with all these drugs… it could be something genetic it could be something else. It could be once compromised by one others will cause more damage it could be liver damage causing the brain to be left unprotected.
There are a couple of ideas as to what is causing mcs reaction one is that the blood brain barrier has been compromised by drugs that cause it… all ssri drugs have to cross the barrier long term use may be damaging this barrier and at some point it can’t keep out perfume… bam you can’t walk.
The other idea is the ability to detox drugs is genetically or other wise compromised and detoxing may heal you if you can tolerate the detox.
I am not sure if either is correct…
Living in Canada there is no treatment for mcs that I have found that is not a two year wait list. A movement disorder clinic is also a two year wait list… treatment with one doctor who does detox is expensive and also has a two year wait list…
So it would seem I have two years to do what I can to avoid chemicals and try to heal myself from whatever I can find to help me. A lot can happen in two years good and bad. We will see.
There is a new fb site no I am not a member but have noticed it has a couple interesting medical ideas may be worth a look for anyone interested.
Hi, I thought I would share an interested experience I have had. 5 and half years ago I discontinued 10mg of citalopram after being on it for 5 months. I had a really bad withdrawal and still have lasting symptoms to this day. One of the symptoms is sexual dysfunction. I don’t have complete sexual dysfunction as I did in the first several years but it is certainly not normal. I still have weak erections and ejaculations and a lack of feeling in my penis.
I also have some undiagnosed condition which is causing symptoms of hypercalcemia (bone pain, increased thirst / urinating, constipation, kidney pain) upon taking Vitamin D. If I take vitamin D these symptoms appear and increase as I increase the dosage. If I stop vitamin D they go away. I have also experienced them by exposing my skin to a UVB lamp. I believe it could be hyperparathyroidism but I’m not sure.
The interesting thing is that when I get these symptoms of hypercalcemia, I also get improvements in withdrawal symptoms. I have felt hypersexual when I have taken vitamin D, with significant increases in sex drive and sensitivity. This is very unusual for me because I have had a very low sex drive for years and then when I get these effects it is like someone flipped a switch in my brain. It is a very abrupt and noticeable change. I also get improvements in some of the other lasting withdrawal symptoms that I have.
I believe what may be happening is that the hyperparathyroidism (or similar condition) is raising blood levels of active vitamin D (calcitriol) above normal. This is then causing the bone pain etc. but it also has an effect on neurotransmitters. Vitamin D has been shown to increase levels of tryptophan hydroxylase in the brain. This is the rate limiting enzyme for the production of serotonin. Essentially the more active vitamin D, the more serotonin.
I think an interesting experiment for people suffering from PSSD and other long lasting withdrawal symptoms would be to take calcitriol and see if it had any effect. If it does work for some people then it might be a clue to the underlying mechanism of protracted withdrawal problems.
Most descriptions of withdrawing from psychotropic meds include something for which there is no proper vocabulary: just a vague stab at describing the indescribable as ‘flu-like symptoms’. I’ve had flu a couple of times in my life and remember severe aching in my joints, a pounding headache and the shivers of a high temperature but the intensely ‘unwell’ feelings I experienced post-olanzapine were about as much like flu as period cramps are like childbirth. On a scale of one to ten, the intense feeling of ‘unwellness’ that accompanied my delayed reaction to coming off olanzapine was off the scale – a solid 15. So bad I thought I was going to die, each and every time it hit.
I’d felt off colour ever since popping the last little 2.5mg pill of olanzapine but attributed it to some kind of UTI. When, three months later, I was blasted by a sudden reaction that sent my BP and heart rate soaring, made me fall over every time I tried to stand, caused my speech to slur and my hearing to malfunction I didn’t immediately experience ‘unwellness’. That happened a couple of days later. It was like a lightening bolt: suddenly I felt so ill I thought I was going to die, quite soon. As I was in hospital at the time, thanks to the other stuff, the BP and vertigo, I had the undivided attention of several medics. They, perfectly understandably, tried to pin down what might be happening. Did I have a pain anywhere? No. Did I feel sick? No. Could I hear them? Yes, mostly…and so on. They ran through the various stroke and heart attack tests but all I could say was ‘I feel ill’. The sensation of imminent death lasted maybe 40 minutes to an hour then began to lift. Till the next time.
This fascinates me, partly because it still happens, although never so badly that I end up in hospital and I have ways of managing. Sometimes nothing works, in which case I go to bed and sweat it out. ‘It’ usually lasts for a couple of hours in total and I’m a bit shaky afterwards, but basically alright. I know I’m not going to die (now) but the episodes are still one of the most unpleasant experiences I’ve ever encountered and I’ve never found a way of rapidly bringing them to an end.
I was on venlafaxine for about three years from 2000 to 2003. A big dose – 450mg – although not as big as some people. I was also taking olanzapine and zopiclone at the time. I made a unilateral decision to stop the venlafaxine, once I decided that it might have something to do with my relentless self-harm (it did). I pretty much just stopped taking it after a month of reducing the dose, then missing days then just stopping. I had an uncomfortable couple of weeks, which I would describe as feeling ‘fluey’ but took ibuprofen (plus the olanzapine and zopiclone) and it passed. I read about the intense ‘unwellness’ that many people endure after stopping venlafaxine, and the descriptions come close to what I experienced, post-olanzapine: ‘so ill I thought I was going to die’ or ‘like flu only much, much worse’. Someone I know, a medic, who’d been swapped from venlafaxine to some other AD told me that a week or so later he was in the middle of running a clinic when, again, like a lightning bolt – he felt ‘so ill I thought I was having some kind of heart attack without the normal symptoms’. His reaction was much worse than mine, although very like mine after coming off olanzapine.
The symptom doesn’t seem to attract much attention, although it’s noted by everyone interested in, and studying withdrawal. Possibly because it is so extraordinarily hard to describe and fits no known symptom. (Vomiting is ghastly but we have no problem understanding what it is to feel sick, or in describing the unpleasant process of throwing up). So – I would really like to throw out a request to anyone who has endured the horror of ‘flu-like’ symptoms. Am I in a minority, finding them one of the worst and most acute of withdrawal physical symptoms? Do they always happen? If other people have had similar experiences, can we find a better way of describing them so they don’t just get lost in one vague, inaccurate category. Does anyone have any idea what causes ‘flu-like symptoms’? Which neural or metabolic pathways are misfiring? Is it dopamine or serotonin related? Something to do with glucose levels? Why is venlafaxine particularly implicated – and the antipsychotics?
Sticking this in here – an article from the New Yorker on rare/interesting diseases. It’s long, and is describing a rare syndrome called “Lesch-Nyhan” which involves extreme self harm: although the article suggests it may be due to a glitch in the genes, basically the cause is unknown. It caught my eye because of the paragraph below: dopamine dysfunction. Which led me to speculate how much of complex withdrawal is closely linked to dopamine, as well as serotonin? And whether the SSRIs affect dopamine function more than the tri-cyclics – hence the dramatic rise in violently impulsive self harm? The antipsychotics certainly mess with dopamine..and maybe venlafaxine too? I can’t answer any of those questions because I’m not a scientist but tossing this in anyway
‘In 1973, a researcher named George Breese, at the University of North Carolina School of Medicine, was working with rats that modelled Parkinson’s disease. He was treating newborn rats with compounds that changed the dopamine levels in their brains, when, to his surprise, the rats started chewing off their paws. He had inadvertently created a rat with Lesch-Nyhan symptoms. “I’ll not go further into the details of what the rats were doing. They weren’t biting their mouth tissues, the way human patients do,” Breese told me. If he gave the self-injuring rats another compound, they stopped biting their paws—that is, he found a way to reverse the symptoms. “We treated the rat the moment we saw the animal make the first pinprick injury to its paws,” he said. The compound, however, has never been approved for use on humans.
should have added – when I was in the middle of self harming on a grand scale – I could never ever understand why I was compelled to hurt myself. It was a compulsion, completely irresistible – to the extent that whenever I was away from home I would seek out anything that I could cut myself with (sharp pieces of metal/glass etc). It is very hard to explain but something entirely different from the despair of ‘I can’t go on’. Just an overriding urge to hurt myself. The thinking then and maybe now was that self-harm (including suicide attempts) was either ‘attention seeking behaviour’ or, more compassionately, that the act of cutting released endorphins in the brain which gave temporary relief from overwhelming mental distress – depression or anxiety. The latter may be an element but completely fails to address the peculiar compulsion involved. Which also had a strange element of addiction –
Would it be possible to start and ‘ear’ section about hearing loss and distortions connected to drugs – and withdrawal?
This thought has been sparked by my experience this morning. Went to a local garden centre, early, as I thought (correctly) it wouldn’t be busy. It’s recently undergone a huge re-fit – enormous warehouses full of garden equipment and a big covered area outside for the plants. I’ve been before – and the background muzak has always been a nuisance – but this morning was something else.
It was actually very interesting – but acutely uncomfortable. The garden centre was very empty, so nothing to do with too many people and too much movement. Within minutes my co-ordination had gone, and my balance, and speech became slurry. My heart rate hit the roof too – maybe because I felt so discombobulated, but on the other hand I wasn’t panicking. So – anxious, but not an acute panic attack.
I identified possible triggers: the huge covered space was echoey. The staff used walkie-talkies to communicate and the sharp bursts of static sound from those were really uncomfortable. In the loos – a Dyson hand drier. I know from experience that they are a disaster for me – very efficient at quick-drying hands but impossibly noisy.
I’ve had hearing problems for years, probably associated with the drugs and possibly with one of three strokes. (They are a confounding factor but I’m certain my hearing ‘issues’ are mostly drug-related). I have one-sided hearing loss (which gives everyone serious difficulties with identifying the source of a sound and coping with several different conversations going on at once – at a party, for instance). But what appears to trigger an acute reaction in me is any ‘echoey’ environment, and any kind of processed sound. This includes: mobile phones, landlines, tannoys, walkie-talkies, YouTube on the computer – or, worse, on my mobile. The TV and radio. If I listen to the latter – and music – through good quality headphones I don’t have a problem. Electronic pings – microwaves or our damn washing machine, which relentlessly beeps at the end of its cycle. It seems to also be connected to the pitch of a sound – it can be triggered by women’s voices in particular.
When I was coping with an acute delayed withdrawal from olanzapine in 2012 I was tortured with hyperacusis – a super sensitivity to noise. I eventually managed by purchasing an extremely expensive pair of acoustic noise-cancelling headphones, which really helped, but to be honest they aren’t discreet and walking round with a gigantic pair of black headphones on isn’t always possible (because you look like a bit of a dick, especially at a party).
The consequence of a bad experience like today is always deranged balance for a week or so, a feeling of pressure in my ears, and exacerbated tinnitus. Plus the fatigue. It all fits the criteria for Meniere’s disease, minus the acute vertigo and vomiting.
I wonder how this relates to the ‘brain zaps’ which have been documented for years, and which so many people suffer from when withdrawing from ADs? I had them too, post-olanzapine. They always happened when I was dropping off to sleep – and were like a very brief, double-burst of static, somewhere behind my ears.
I know some antibiotics are renowned for oto-toxicity. My husband was given a poky quinolone of some sort to treat an acute kidney infection last year. He complained about his ears feeling bunged up – and since then has been noticeably deaf.
Is there any work going on around the effects of psychotropics and other drugs on hearing? I’d be really interested to see an ‘ear’ section on Rxisk. If I had to pinpoint one thing that gives me the most grief overall – it’s my bloody ears: unilateral deafness and distortions and sensitivity to sounds. Tinnitus, but that’s not really a serious problem for me, as listening to my whistling head is positively relaxing by comparison.
This is a great idea. One of the first wonder drugs in the 1940s was streptomycin – which causes hearing loss that was mostly unilateral. Unfortunately we don’t have enough personnel or funds to make this happen right now but perhaps in the future.
I can’t believe what I’ve just read. As regular readers will no doubt know, I suffer from hearing loss due to recurring middle ear infections in my early years ( from 2 years old to my teenage years). Mine and Sally’s type of ‘ear problems’ – balance, vertigo, tinnitus etc. are very similar. My shock came in reading David’s comment about Streptomycin. I was on a ‘mycin’ quite regularly during those early years. Can’t remember the prefix but definitely not a strep. Wonder if the ‘mycin’ is the cause of unilateral hearing loss? I haven’t ever considered that my medication, not the ear infections, were the cause of my hearing loss. How interesting!
it may not have been the mycin but all mycins can cause hearing problems
Back again. Withdrawal has taken new turns. My eyes. Glaucoma, asigmatism, severe myopia have all been there. From day one and exacerbated are eyelid tremors bigtime, double vision if I read > 20 minutes a day, nocturnal involuntary eye movement and geometric figures with eyes closed upon waking. An opthalmic specialist gave me a prism lens for my right eye which helps because my eyes are compensating each other. It’s not perfect, but at least I can tolerate the reading at 20 minutes and my eyes aren’t as painful. Depression is something I fight everyday what I call successfully. No more psyche meds for this girl. Nadda! GI is still a mess with the latest severe gut wrenching episodes along the diaphragm. Of course, CT scan came clear. I think it’s like somebody keeps messing with the circuit breaker or supplying it with only enough electricity to zap things. I’m moving out of state. NorCal is bad medicine. Off to Wisconsin to be near family and they want to start in medicine from ground zero, complete physical. My GP here is the nicest doc but perplexed. I simply looked for someone similar. Gonna miss him. Only doc who believed in me besides my therapist.
Finally somewhere I can read others suffering what I have instead of being looked at blankly by doctors when I tell them of all I’ve been through. All I’ve wanted was to find someone else this has happened to my theory and perhaps and explanation. Many aspects to my story but I will stick to what caused it all.
20mg Escitalipram for 3 years, stopped no taper, went into full SSRi withdrawal, crying then rage, agitation like nothing else, pacing and not being able to stop, brain zaps, clawing at my skin because of pain. The pain is what I want to focus on, depression they say can be physically painful and let me tell you this physical pain has never left me whilst some other withdrawal effects have gone.
It feels like my nerve endings are on fire, I must be occupied at all times and can quell it kind of but when it flares, it is literally like my body is on fire, like my blood is acid. My theory is that the Escitalipram withdrawal has effected signalling in my brain to my nerve endings. Has anyone else felt physical pain like this? It’s so hard to put into words, it’s mainly in my chest yet not, the pain has not stopped since going into SSRi withdrawal, what could of been done? What receptor sites are envolved in pain and thus could Escitalipram of done this? Thank you.
Hi Hannah , I can relate to your story , I to have had this feeling , my body burns all the time , you some it up perfect by saying it feels like acid is my blood , my brain burns , I have been taken off 6 meds in the space of 12 months all c/t , it has left me with severe suicidel depression and physical burning of the body that’s with me all the time , I get no relief at night terrible insomnia so I don’t even get a break when sleeping , I am 8 months of all meds but have been suffering for 4 years now after pooping out on venalaxafine and then the doctors throwing meds at me trying to treat the symptoms only to make things worse , it’s a torturous hell , what annoys me is that there is so much talk about what’s going on to us , more and more doctors are coming round to the fact that these drugs have harmed us like dr David Healy . But for us that are suffering these horrendous effects I don’t see what is being done , where are all the scientist , doctors medical breakthroughs to help us . Who is looking into finding a cure or at least something to alleviate our suffering , I don’t know how much more my body and brain can take , RxISK has done a remarkable job getting the message out , but now it’s out where are the people trying to fix it
Glad to know I’m not alone, every time I look more and more information seems to be coming forward, i hear more people experiencing things just like us and that simply do not seem to go away, what I don’t hear is a fix or solution or doctors going hang on there something wrong with these SSris. Withdrawal and DS are huge and varied problems but rampant with SSris. Why wasn’t this observe with Tricyclic antidepressants? It’s going to be 7 years for me in January I am battle worn. I hope you are hanging on strong Terrry, you are not alone and keep safe at this time of year.
Coffee : depletes your whole body of nutrients, specially B vitamins and minerals, zinc, iron, magnesium, potassium, and other micronutrients.
Tobacco: wrecks your body and mind top to down, hair, skin, organs, the whole system. we all had a grandfather who smoked until his 90’s, sure, but mental illness is profundly connected to tobacco, drugs and drinking. Some people dont feel it, but tobacco is associated to a lot of mental troubles.
Salt: salt depletes acetylcholine, a neurotransmitter, also nitric oxide, ramp up your adrenaline and adrenal exhaustion. Dont go for the hype that salt or sea salt has minerals that help you, even sea salt is 98% Sodium chloride.
Sugar: depletes your body and absorption of Magnesium, B vits, selenium.
Alchool: tons of problems.
To me these are the main problems of todays society. Add a sedentary lifestyle, less sunshine, less physical activity, social comparison by social networks and nickel intolerance/bioaccumulation. ( some foods, cookware, smoking etc)
But, start by avoiding the toxics, Salt, Sugar, coffee, smoking, antinutrient foods.
and yes, you may eat a pizza here and there.
In my experience people on psychotropics smoke so heavily to offset side effects – and may continue to smoke to manage ongoing legacy effects. Ditto booze – it offsets severe akathisia, hence so many people finding they have a sudden alcohol problem after starting on antidepressants. Coffee counteracts the acute lethargy caused by antipsychotics. Salt makes food taste nicer. A modest amount of sugar/carbs is crucial to a healthy diet. And tolerance around different lifestyles and awareness of the huge battles many people have just getting through the day is surely the most important thing.
I’ve been involved with horses for many years and they are never diagnosed with “depression” without looking at environment, Endocrine dysfunction, nutrition, etc. Small animals are frequently treated with “puppy Prozac” and do suffer horrendous withdrawal.
I recently researched this subject for a doctor studying physician suicides and hit on quite a bit of information pointing to low cortisol and oxytocin as markers of depressogenic behaviors due to prolonged stress. Not a surprise on cortisol and stress, but oxytocin was interesting. It seems that looking at this in reverse might inform in some way.
Correlation between yawning and spontaneous orgasm is a bizarre combination of treatment w SSRIs. I’d heard of both, but not simultaneous.
I have been struggling with opiate withdrawals for some time now. And have been noticing many strange symptoms. When my dose was higher, I even noticed impairment in my hearing, it was like as soon as it was at its most effective(3 hours after taking), my ears would fill with a sort of blood rushing sound and just pulse in reaction to the slightest noise or my movement. Very strange…. my hair has gotten Significantly lighter, and will not take dye at all(very annoying lol), of course my appetite is all over the place, and I have terrible stomach cramping. In fact I have cramping all over! And the cramps or stretching seem uncontrollable. Once I get stuck stretching I kind of contort and shake, and for a few seconds get stuck sometimes so badly I have given myself pulled muscles!! I feel like I do get restless legs, but this morning for the first time experience the ‘vibrating nerves’ and literally thought my phone was ringing! Of course all of this along with the joint pain I’ve been feeling is quite sucky for lack of a better word lol. Also, get these chills out of nowhere not where I’m cold, just when you get that muscle spasm/shake go up your spine or your body? Sometimes it will happen repeatedly. Sometimes my jaw will shake uncontrollably when I’m not cold. Sometimes ALL of me will shake! Also the uncontrollable and constant yawning. And the occasional endless sneezing fits.. Sorry ah, this is all quite difficult to describe. But strange sexual dysfunction for sure, extreme sensitivity before daily dose, and desensitization after. Anyway, despite all of this I am still truckin’ away! The doctors want me to take it very slow. 1 mg a week. 44 weeks to go. It’s hard to imagine this process taking a little over a year total, but I am fighting the urge to rush through it as quickly as possible, as that would make functioning in everyday life quite impossible. By the sound, I guess Ill Be blessed if these symptoms ever go away. Good luck to you all. I pray you all find comfort and relief somehow, god bless.
This thread is a godsend. I was on a low dose of Zoloft (100mg) for about two years. Everything was fine, my bf and I had an oops moment and I took the morning after pill. Within two weeks my body completely changed. At first I started feeling like I was going to faint and felt completely out of sorts. This eventually stopped. I then started to get horrible digestive issues. Extreme bloating, constipation, excessive burping, and horrible water retention. I then started having memory problems, depth perception problems (it was impossible to go down more than 10 stairs it would all start to look like one level and then I would get panicked), and vision problems. My memory problems would be that something would be in front of my let’s say a bowl or a book and I couldn’t recall the word. I’ve been fit as a fiddle my whole entire life. It was terrifying. Eventually I decided to taper off of Zoloft bc my gastro-intestinal issues were so severe and I had tried every probiotic under the sun. This was 6 months ago.
My withdraw symptoms were flu like for about two weeks then that subsided. My bloating feeling went away sometimes (but would return periodically) which was amazing but my water retention did not. I also gained over 30 pounds within a 3 month period and I’ve been an athlete all my life who eats clean & exercises regularly. Here is a list of my current withdrawal symptoms: Restless sleep (2 months ago)
Extreme fatigue after waking
Frequent urination just like when I was ON Zoloft -3 times a night -small amounts of pee
Unable to build muscle
No sex drive-my vagina is dead
Numbness and tingling in limbs
Extremely dry skin
Extreme water retention
Malaise -could be from current health problems
Agoraphobia like appréhension to go outside
Mood changes with PMS
Swollen/tender breasts two weeks before period
Incapable of losing weight -don’t gain it but don’t lose it, it’s as though my body is frozen. I have stayed at 155 pounds for 9 months and I workout like a BEAST
Extreme lack of blood sugar regulation-I get lightheaded and jittery after I eat a full meal. Almost to the point of nauseousness.
I have had every hormone test under the sun, have had my thyroid checked twice, all tests are normal. My gyno is baffled and then she tried to put me on Paxil and I was floored. These doctors are not geniuses. They’re the mechanics of the body and a lot of times mechanics are shitty.
Bc my weight has been such a point of contention she put me on diet pills. I’m on day two and ALL of my water retention, bloat, and inflammation are gone. My bf is shocked how different I look. Even though my hormones measure as normal the way my brain is responding to them are not. I truly believe the morning after pill had a severe reaction to the Zoloft and my poor brain doesn’t know what to do. Had I known that Zoloft would cause these type of severe reactions I NEVER would have taken zoloft. It’s so upsetting and soul crushing. I feel like I’ve lost a whole entire year of my life. Because what we are going through is so extreme practitioners are quick to say it’s psycho-somatic. Are they forgetting that we were on medication that literally changed our brain chemistry?!?
It was so comforting reading your comments. We are not alone. This is real. We have to keep advocating for ourselves and stick to our very real truths. We can ignite change within this awful money hungry industry.
I have to add that I gained the 30 pounds while I was still on Zoloft after I had taken the morning after pill.
Oh, I can totally relate. Two years on venlafaxine, discontinued due to the hypertensive effect it had (apparently my dr did not see this coming). Nausea passed, brain zaps passed. But gained also around 10 kg in few months, without changing diet or training habits. And no matter what I do or how little I eat, the bloating :/ I don’t know what to do.
I took Zoloft for 15 years and it worked like a dream for my anxiety and depression. I had no side effects (although now I realize I might have had/have PSSD because I just didn’t have orgasms like I used to after I had a hysterectomy, and also at the same time or close to when I started taking Zoloft–I assumed it was the hysterectomy. Orgasms are still possible for me to achieve, but seem to fade before final climax). I never realized this could be a symptom of Zoloft withdrawl. While that is inconvenient, it is really not a severe problem. Another withdrawl symptom I have bothers me a lot. Right after slowly tapering off the Zoloft due to my insurance company no longer covering it, I started to have a creepy crawly feeling in my toes. I didn’t think much about it until it slowly progressed up my legs to eventually, over the last 15 years, to my trunk, neck, head, arms, fingers, and now my entire body. It used to be just at night, and accompanied by the urge to move my legs, so I was diagnosed with restless leg syndrome. I have seen many doctors over the years, all to no avail. Although I feel fortunate that my symptoms are not painful at all like some other people above, I have been continuously seeking a cure. My GP says I have damage to my nervous system but absolutely refuses to believe that zoloft withdrawl had anything to do with it. My creepy crawly feelings are now similar to tremors, but they are inside my body, not outside nor visible. And they are now worse in the morning when I wake up but occur all day and every day, some days worse than others. An MRI of my brain shows holes in the white matter and myelin sheath damage but not of an MS TYPE.
So my questions is this…since withdrawl from sertraline may have caused my problem, will it help at all to start taking it again?? I am desparate to find a cure.
Hi, I was on Topiramate 25mg a day for only 12 days. I stopped taking it and on the second day of withdrawal I began getting extreme muscle pains. The 4th day I got burning sensation headaches and the muscle pains kind of went away. Does anyone have any idea if this will go away. I’m extremely tired and frustrated.
The withdrawal I am experiencing are worse that the feelings I endured before taking this poison. I have zero interest in life most days. I cry everyday. I wake up feeling fight or flight until about 6pm. I lost my job. I feel brain dead. What the big pharma has done to us is totally planned and commits is to more meds and more counseling and more and more. We were tricked into becoming addicts to a a brain chemical that has no real research behind it.
My reading around sites for anhedonia/PSSD has given me the impression that there are more people with Tourette’s/ADHD/OCD than you would expect in the general population. These conditions are known to co-occur.
It’s true that people with these conditions may have been treated with SSRIs/antipsychotics and therefore now have these awful side-effects, but my impression is that there are more with these conditions than you’d expect (I’ll see if I can come back with some evidence – I want to get my thoughts on here now).
I read some research suggesting pssd was more likely in families with ADHD (I’ll try to find it).
Tourette’s is a problem with dopamine signalling and there may be an immune/autoimmune component.
I am emerging from 6 days of utter hell. My Drs office sent my cymbalta refill to mail order, after my explaining that I was completely out. The original refill arrived today. Every snafu that could happen did. That’s not the point, here. I knew from a past experience, one missed dose made me emotional, two almost a basket case. I had no idea that day 3, 4, and 5 would become so very bad. I had weird dreams, to add to the listed side effects I experienced. There was irritability to the point of extreme hostile anger. Yesterday as I contemplated an old expired, ativan bottle of pills, there was that curious thought that if one made me feel better, wouldn’t two be even better? or three? I consider that a suicidal thought.
I have been on cymbalta more than five years, after abruptly stopping HRT, with a subsequent bombardment of all the hormonal issues. I am most definitely going to taper off the cymbalta.
I am blessed in many ways, my husband was here to run to the different places trying to help( Dr. , 3 pharmacies, etc. I suspect there are people with less support who may be unexplained suicide or overdoses, from withdrawals like mine. Cymbalta’s disclaimers aren’t strong enough. I came here trying to find a place to register my reaction. Thank you!