The Unbearable Heaviness of Psychiatric Drug Withdrawal

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Last week Matt Samet posted about a setback he’s recently had. The withdrawal ugliness which had largely abated came crashing back after several years of wellness. I made some comments about that in a post that linked to his.

What I didn’t say is that I’ve had my own setback recently too. Setbacks for me remain routine and normal . . . they are part of the excruciatingly non-linear process of recovery. I’ve not yet experienced anything resembling full functionality, but I do have periods of time where I start to imagine what that might be like again as I’m able to do a bit more than usual. So, these setbacks, while becoming less intense in many ways are always hugely discouraging still.

This setback was triggered by a commonly used topical (over the counter) medicine, so yes, another drug reaction. It’s hard not to beat myself up for even thinking I might tolerate it. And I really didn’t expect this to happen, but our skins absorb stuff as efficiently as when we ingest through our mouths and I know this. Anyway, I learn more and more about how to take care of myself.

One of the things I’ve always liked about reading Matt Samet’s work is his gift for description in his prose. Describing to the uninitiated the utter hell realms of protracted psychiatric drug withdrawal is very difficult. I find myself at a loss even when coming up with some rather creative metaphors which I’ve done many times. When I read Matt’s expressions I always think, “oh, good, he makes it at least vaguely conceivable to those who’ve never gone through it.” One of the worst things about these acute and disabling symptoms is the utter sense of alienation they create in those of us experiencing them.

Here are a couple of tastes of his prose describing such.

First from his first  post on Mad in America, The Other Side:

At my darkest hours, I certainly lacked all faith. Sleeping two hours a night, vibrating constantly like a half-busted refrigerator, barely able to converse or make eye contact, sweating, sheathed in muscular rigidity, panicking, too weak and fatigued to exercise, too distracted to read even a simple magazine article, I remember thinking the pain would never end.

And more recently as he writes about the setback he’s experiencing:

I’ve come to believe that the big issue with med withdrawal is that it causes a light-years-beyond-“discomfort”, horror-movie overexcitation that won’t, not for one instant, let you forget your existence. Your second-to-second reality comprises a seemingly unending hell with no pause button, only the occasional relief of sleep. You are in so much pain on every possible level that you simply cannot escape yourself, and so the pain looms larger like for it.

In the withdrawal/healing state, the symptoms are often so strong, and the fear, racing, obsessive, and tortured thoughts, and inner torment so great, that you are unable to enter that frictionless state — aka plain old life — in which you are simply acting, moving freely about the world as need and desire dictate without the ball-and-chain of dread-infused self-awareness dragging you into the abyss.

Without being so persistently aware of your existence that you also can’t stop from ruminating about its antithesis, death.

Distraction helps a little, but only for so long. I often felt like my very shadow was chasing me, leaving nowhere to run. As soon as I paused, even for a microsecond, the withdrawal storm was back on me like pack of snarling dogs. Worse yet, insomnia and fatigue had sapped my energy stores, yet if I tried to “rest” because I simply could not take another step, the symptoms crowded in to fill the stillness. I felt like a shark that must always keep swimming, or it will drown. The experience was in every sense an existential trap.

You look at other people not tormented as you are and wonder how they live so casually, so fluently. What secret do they know that I don’t? Their world seems alien, a realm of the gods and superheroes, a paradise unobtainable. Just to go grocery shopping or throw a Frisbee in the park or smile at a child would take more energy and courage than you could ever imagine conjuring. Occasionally, you hit one of those rare windows of calm, and you can, in the contrast, see how withdrawal has warped your picture of the world. Then, discouragingly, the symptoms return to push you back into a terrified and frenzied thought-storm.

Oh shit, not this again. (read more)

Yes, oh shit.

Anyway . . . this is in large part why my social media hiatus hasn’t been as complete as it would have been otherwise. I had been successfully moving back into the world a bit. I’m still more functional than I’ve been at other setback points, but I need the distraction the internet affords at times like these when the various pains and sensations are once again screaming within me. I’m not nearly as involved in all the things I’ve done online for the last several years but I’m around more than I was the first week or so when I was feeling a lot better. My notifications remain turned OFF and I’ve not re-subscribed to the multiple news and information outlets and I’m not responding to most comments etc, but I’m around more than I said I would be.

I know that my trajectory continues in a positive direction so I’m largely okay, but yeah, it sucks too.

Below I’ve put below a list of some of the posts I’ve written from the trenches. When the symptoms were at their most acute and chronic too. That is really why protracted withdrawal issues are so horrible. The symptoms are both acute and chronic. An unremitting hell.

I can say that it’s all mellowed hugely over the years I’ve been ill. It may be taking a long time but the direction is undeniably one that moves towards healing. I remain optimistic. Truly and deeply optimistic.

More similar posts can be found here: Monica/Gianna, healing documented

And then from Dr. David Healy’s site: Monica’s story: the aftermath of polypsychopharmacology 

For information on how to more safely withdraw and lower the chances of such illness see: Psychiatric drug withdrawal and protracted withdrawal syndrome round-up

For more of Matt Samet’s lovely prose read his book:

On Amazon: Death Grip: A Climber’s Escape from Benzo Madness

And for Kindle: Death Grip: A Climber’s Escape from Benzo Madness

(Thanks to Beyond Meds, where this post appeared today)

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Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

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27 COMMENTS

  1. I can really identify with this and your symptoms I am a year out (With one minor set back in July where I had to reinstate on a small dose for a couple weeks, that messed me up.) Getting off Benzos has been one of my greatest battles. What remains? Extreme noise sensitivity- mainly when falling asleep. I have to have cotton in my ears. Hypnic jerks mainly when falling asleep. (I took Klonopin at night for the most part so that is when I struggle the most.) I get muscle spasms and twitches, however they have subsided quite a bit.

    The worst symptom is by far heart palpitations. I had a complete cardio work up and told me “We found nothing wrong.” I have been on a 30 heart monitor which is picking up PVC’s but I am told they are benign. I am sorry but they still scare me! These pvc’s started five months out. They are very much related to digestion. I went in and had an endoscopy and was told there was nothing significant that would cause pvc’s. I am at my wits end. I know if I went back on benzos they would subside but I want more than anything to work through this.

    I wish I would have learned techniques to deal with my panic disorder that did not involve drugs. I was too young when I went on them and just oblivious to what it was doing to my body. mind and spirit.

    I cringe when anyone tells me they are on a benzo. I cringe at the amount of people that are and have no clue what it is doing to them. Even small amounts.

    I guess all we do is keep fighting…. thanks for sharing. It helps to know I am not alone in this struggle.

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  2. Your story is so courageous. I’m sorry for all that you’re enduring, and I’m happy that you are optimistic. I believe everything heals, in time.

    The day after I finished tapering from nine meds, it felt as though my blood were on fire, and this lasted for about 48 hours. I knew it was the withdrawal, so I rode this out, crying continuously from the excruciating pain. Whenever I attempted to go outside, it felt as though I had a billion needles sticking me all over my body. I felt allergic to air.

    My body felt tortured for a few weeks more, and then it began to subside, as I kept telling myself it would. I had nasty waves of withdrawal for a couple of years. I worked hard to regenerate affected organs with herbs and to build my energy with Qi Gong and Tai Chi. Acupuncture was also very helpful. Eventually, the symptoms subsided. I did a lot of spiritual work, also, to discover new perspectives from which to navigate my life and create my experience. This is what healed my mind. The body heals itself, if we let it.

    Thank you for all that you share about your process, and continued best wishes on your healing journey.

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  3. I was trying to find a way to respond to you privately but could not find and email address so I am posting again in regards to the heart palpitations/pvcs. I wanted to share more about my experience with them. As I said in a previous post they started about five months out. I was actually feeling very good when they started. It seemed very random. They could not pick them up on ekgs so I eventually ended up on holter monitors. I am on a 30 day one right now as a matter of fact.

    This is what I have found. Any hint of anxiety sets them off. It as if my central nervous system is “Ultra” sensitive. Any of the issues before getting on Benzos is heightened with protracted withdrawal. Basically everything I was running from on the drug is back with a vengeance. Also, if I focus on the pvc’s they come on strong. It as if I am powering them at times. Food… again everything is so sensitive. Spicy foods, alcohol are big no no’s. Pizza is the worst. I did not have any pvc’s for three days. I over indulged on pizza and the next morning my pvc’s were out of control. If I eat too much it also triggers them. I have to eat small meals. It feels like trapped gas is the cause. I also believe in the vagus nerve theory. That is gets sensitive and causes the heart issues. Maybe the benzo suppressed this nerve and coming off it has thrown it totally off? There has to be a connection.

    For awhile Zantac helped me. If I took one in the morning the PVC’s would subside. I have noticed it does not work as much, but it still does on occasion. Also, tums. The strangest thing is my GI found no irritation or excessive acid.

    Lastly, I have severe muscle tension. Especially in my upper back and neck. I have read others accounts that the vagus nerve (Which effects the heart) can get irritated from muscle tension and some have found massage, chiropractic adjustments and physical therapy helpful.

    I really wish I knew why this was happening. We may never get a definitive reason.

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    • the heart palpitations are a very typical (if also very horrible) symptom of psychiatric drug withdrawal…it happens a lot with both benzo and antidepressant withdrawal and likely is also associated with other classes too (we simply see so many 1000s of benzo and AD cases…so it’s very clear in these instances)

      it’s part of the foundational autonomic nervous system dysfunction these drugs trigger. Healing from it, in my opinion, means many different things for different people…but generally includes all manner of holistic care…diet, meditation, exercise…etc etc…

      I’ve written about this foundational aspect here:
      Autonomic nervous system dysfunction, protracted psych drug withdrawal, CFS, Fibromyalgia and why I still limit engagement on the internet http://beyondmeds.com/2013/07/24/ans-and-interaction/

      and here: Protracted psychiatric drug withdrawal syndrome, chronic illness, CFS, Fibromyalgia. Yeah, they all have things in common.http://beyondmeds.com/2013/07/08/psych-drug-withdrawal-cfs-fibromyalgia/

      mine used to keep me up for days and cause such pain that I would scream…I was afraid of the neighbors calling the cops…it’s much much less now.

      when it was dangerously out of control I sometimes (very carefully) used beta blockers to help quiet it…I haven’t needed anything like that for a couple of years now…but it’s one of the ugliest and most awful things I’ve had to deal with (among a list of far too many ugly things!)

      hang in there…it does pass.

      I find epsom salt baths and yoga both very helpful…

      Here is a yoga bit: Yoga back bends: feels yummy on the autonomic nervous systemhttp://beyondmeds.com/2013/07/20/yoga-back-bends/

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  4. I want to thank everyone else for their comments…for those already made and for those to come.

    I cannot engage in comments much…it’s too exhausting so it’s likely I won’t be making many more here. I greatly appreciate all participation and I know that many of you can offer each other support so please do that.

    thank you so much for fighting this battle with me and everyone here at Mad in America.

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    • Monica Cassini,

      I’m a survivor and on my way to health, here’s my story, any suggestions or thoughts? Histamine was the absolute key for me btw.

      This is my experience, all the experiences on here and the internet led me to figuring out how to save my life, so here’s a thank you. I’m recovering and healing at last.

      This website was key as well.

      http://beyondmeds.com/2013/01/07/histamine-intolerance/

      This site is from a desparate researcher as well, and they were spot on in my case.

      Note: I am wondering is an autonomic nervous system thing, but this may be the same cause that this histamine withdrawal occurs in some and not others. which may be the reason we got on meds meant for a different illness? (this is what I’m finding, do your own research and talk to very trusted physicians, all kinds… 😉 ) This seems to be unknown, but my doctor has changed my diagnosis to Substance Induced Mental Illness now. Take all this with a grain of salt and do your own research being done, but this is what helped me stay alive and start the healing for good.

      I’ve been going through this. The only way I’ve survived was when I discovered the Histamine connection. Then antihistamines were the poison I thought would help. They ended up helping at first, but then depleting probably all of my diamene oxidase (DAO). I discovered that for me I probably (I’m not a doctor but this proved to be my case) should never take any medicine with antihistamine properties, especially high level ones. I have to take some psychotropic meds to sleep, but they are low level histamines, and my body is okay with that as long as I get some sleep. It has to get out of my system and I in no way want withdrawals or dependency, so I need to find a better solution sometimes soon. Low Histamine diet and getting out of stressful things is the hugest answers I’ve found so far.

      http://chronichives.com/useful-information/histamine-restricted-diet/

      Best diet I’ve found but test All things before eating large quantities, your body knows what’s good, listen to it.

      Vitamin C is supposed to help a lot. folic acid is bad? Anyway, I am on my way back to health now and detoxing my body. Low histamine is a special diet but looks a lot like a detox diet. Plenty to eat, but still very restrictive. Its better than what my body considers poison, but a little interesting as my body removes toxins and calms down my excited histamine receptors. I need my DAO back too, so I ordered DAOsin DAO enzyme supplement, which I’ll get tomorrow thank goodness. They need that at health stores for sure. I suspect that most are suffering from this rebound effect I describe. Insomnia, hyperactivity, talkativeness, energy, I have a GI thing probably related to the histamine (it is lots better on healthy low histamine foods) and hot flashes etc. I was almost gone yesterday when I discovered this. So I am basically allergic to all high histamine foods and all antihistamines to one degree or another are my poison. Misdiagnosed at 15 with bipolar. I think I have a radically disregulated autonomic nervous system. Causes many symptoms, even mental effects, I had deep deep depression around puberty (significant?) before I had an anti depressant and ended up in a crazy insane kind of situation for so long. I graduated college etc through the love of God and my family, but mostly flat emotions and anxiety were my experience on antipsychotics, they were treating something that was an autonomic nervous system thing, not a psychiatric thing. Needed a neurologist, not a psychiatrist… Holy Crap.

      http://beyondmeds.com/2013/01/07/histamine-intolerance/

      http://www.mindbodygreen.com/0-11175/everything-you-need-to-know-about-histamine-intolerance.html

      And this website helped a lot to see my same story written by the author and all the commentors…

      I am fairly certain that this histamine thing happens mostly to those who are in this situation. I’m not a doctor, but I sure became an expert in neurology by myself in the middle of the night a lot of crazy energetic desperate nights. Every doctor should make sure that someone doesn’t have any form of dysautonomia or nervous system issues before any meds are given for the wrong thing and they have to fight to escape like me and lots of us.

      This is my story, I’ll post back later with updates, but I am sooo much better and my body is much more happy. Until then, stay calm and remember we’re all in this together. I don’t know that my situation is the common ailment, but here’s what I found.

      I need to see a neurologist soon to make certain, but it all adds up perfectly. My psychiatrist has agreed with all my findings, but obviously doesn’t know it all or have the research to make conclusions about this condition.

      good luck,
      nocnock

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      • not sure but it seems you aren’t aware that I’m the author of Beyond Meds…those posts you shared on histamine were written by me…am I right…you didn’t make the connection? anyway…thank you and I’m glad you’re finding your way back to health and well-being.

        This article was written in October of last year. I’m doing much better now…I wrote this during a setback…that happened after I found the histamine link…histamine is just a piece of the puzzle (an important piece) but…not the be all end all…not for me anyway…though perhaps it is for some.

        take care…may your health continue to improve.

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        • I did not notice, that was seredipitous. You’re “research” saved my life not two days ago and i am so much better, maybe 50% instead of 1%… I discovered in the nick of time. I don’t know if i was cautious enough about what i posted. But I wanted to tell my story because incredible people like you helped me so much, but do i need to modify anything in your opinion? Adding in that i tapered my zyprexa for 5 months might help. Antihistamines are very bad for me, but everyone? I just dont have enough info yet. I qaited until i dramatically improved to post anything. But I’m no doctor. Although my psychiatrist says I’m a true doctor and scientist for all these findings… I don’t know if this withdrawal is specific to what you were thinking (have you confirmed?) was a more severe autonomic disregulation, but everything fits for me. I’d love more info about what helped you. My body is detoxing and I’m learning all i can and seeing trusted naturopaths, psychiatrists, GI doctors and my primart care doc all of whom are on my same page even if all the research isn’t there… I’m trying to figure out sleep the most. Hopefully stopping the adivan and trazadone which have only been used a couple times. This ia a very interesting thing, and tragic too. I lost more than ten years to this… But its looking way up.

          Nocnock

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  5. I appreciate the response. I just dug a little deeper into your blog and read that you purposefully have it set up for no correspondence. I totally understand. I will look into the histamine connection as I have often wondered about food intolerance. Keep up the fight and much appreciate to you and your openness with your journey.

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  6. Keep a logbook during withdrawal and re-read it from time to time.

    “To see what is in front of one’s nose needs a constant struggle. One thing that helps toward it is to keep a diary, or, at any rate, to keep some kind of record of one’s opinions about important events. Otherwise, when some particularly absurd belief is exploded by events, one may simply forget that one ever held it.” George Orwell: ‘In Front of Your Nose’ First published: Tribune. — GB, London. — March 22, 1946.

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  7. A million thanks to all the people braving the uncharted waters of psychiatric drug withdrawal and sharing their stories. It takes incredible courage to face the dragons in the deep.

    Your stories have been a warning and a guide to me. I may be one of the fortunate few who have learned from your stories just in time to avoid some of the worst withdrawal pain.

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  8. Thank you so much. I can definitely relate, especially to the pain/sensitivity/fibromyalgia aspect. I normally wouldn’t even consider such a thing, but at 2 months out from going off of klonopin (just 6 months for sleep, actually 6 months because I couldn’t get off of it easily OR deal with withdrawals at that time) I can definitely relate. It is quite depressing, and I hope it goes away soon. I am in such intense muscle spasm that I can barely function. My mood is usually good, but no one can manage to fix the problem and I was such a healthy and active person before that I can’t do what I once did, even a few months ago. Frankly, I was told I had these conditions (fibromyalgia) before, and it wasn’t pretty, but I managed to turn off the fight-or-flight response that I believe was responsible for it and went on to live a very healthy life. Now, I’m back in that chronic sensitivity phase and it scares me half to death! I can’t help but wonder, however irrational it is, whether or not this has tripped that response again and I will once again be crippled by it longer term.

    In any case, I was just trying to get a month’s worth of sleep, and it has bought me disability once again, after my life had become one of athletics. It’s hard to not get a it upset about that. I’m just looking for hope that it is not permanent.

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  9. The worst hell I ever lived was Zyprexa withdrawal. They told me “its safe and non-addictive”.

    The term “non-addictive” has nothing to do with the amount of hellish withdrawals some of these drugs produce.

    Zyprexa withdrawal was worse than Xanax withdrawal by far, ya I just said worse than the multi milligram a day Xanax withdrawal I endured a few weeks before I once again trusted psychiatry and took Zyprexa for sleep and was told “don’t worry… its safe”.

    This was before I learned to look up these things online.

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    • yes i was on zyprexia and the withdrawels were absolutely hellish. i was not told anything when i was prescribed them they just gave me them. i got off them and went down to seroquel as i read an article called 5 easy steps to getting of zyprexia. it said the zyprexia worked on 17 receptors and seroquel worked on only 7. then to go onto haldol which worked on 2 receptors. the seroquel side affect are almost as bad as the zyprexia withdrawels, yes a bit of an exageration there but the sides from seroquel are horendous. i had pains in my tongue and face and could not lie down on the pillow and even my lips were sore. however i have been reading a lot of this page and was reading about hystamine. thats the receptors that seroquel work on. also i have been eating a lot of currys lately and i have read that they can cause problems.iv got one in the fridge it was for tonights meal. but i wont be having it now. love this site. it has helped me so much. i feel like crying when i read some of the posts and i identify with them and im so glad im not alone in what im feeling. i’v just managed to cut down a quarter of a 25mg seroquel. so im glad about that.i will stick with this for a few weeks then cut down another quarter. im on 50mg i was on 100mg so im getting there so but sure and painfully. god bless everyone and good luck love robinaxxx

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  10. Psych drug withdrawal is tough, at least I found it so, but fulfilling too.

    I managed to stop neuroleptic drugs, I had three “failed” attempts where I had to go back on the drug in question and this was hard to deal with as I was having problems on the drug. It took me ages to come off the drug, eighteen months perhaps.

    I was fine for a period of two years and then became acutely psychotic (it was right out of the blue) and had a short spell in hospital and back on a neuroleptic, this time Zeprexa and clonazepam. When I got out I managed to stop the drugs, first the clonazepam and then Zeprexa. That was over five years ago and I feel pretty good now, totally drug free, and work full time.

    Everyone stopping or reducing psych drugs takes an individual path. People can manage without psych drugs, and do well.

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  11. I am having a difficult time tapering off Lorazepam. A year ago, I rapidly tapered off Sertraline, because it was too activating for me. Now trying to taper Lorazepam, I find myself in deep trouble. My BP has become unstable, my head has tremendous pressure, my heart beats are scarry, my breathing labored. I am debilitated 🙁
    I tapered a tiny amount, and all hell broke loose. Depression and crying all day, plus the symptoms mentioned above.
    I have been holding for 7 weeks now, with no relief in symptoms.
    What to do? No doctor I have been to, has been able to help ..Their solution is another drug .
    Does anyone have a suggestion as to how to proceed? I would appreciated very much ..This suffering is unbearable. Thank you.

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    • Have you been to any of the online support groups like benzo buddies? I don’t want to give any medical advice because I’m not a doctor. But I can tell you that it will pass. Also something very important to remember is a lot of our withdrawal symptoms are exacerbated by our fear of withdrawal. When I ruminated on my symptoms they remained and got much worse. Try to think back to your success and focus on that and know that you will get through this too!

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  12. Thank you so much for the encouragement justajem ..I appreciate your thoughts very much.
    I will follow your suggestion to not ruminate.I hope that I can overcome this ..Today, I am going through a horrid wave ..It has taken my legs from under me ..:(
    If you have any more suggestions please tell me ..
    What did you taper from? And how are you feeling?
    Sending you thoughts of well being, and thank you again, for your support.
    Chloe

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    • I am doing pretty well. I did a short taper from Klonopin. I was on it for about 15 years. Hang in there it will get better. I cannot stress enough how important a positive attitude is throughout this journey. Our minds are very powerful. And we can really make things harder on ourselves!

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  13. Hi justajem,
    Thank you once again for your encouragement ..
    I appreciate you taking the time to respond. I am happy that you got to the other side.
    My situation seems dire ..I am holding a cut, a tiny cut for 8 weeks now, and it seems that instead of symptoms settling down as time passes, new symptoms appear to make my condition unbearable. Most symptoms are concentrated in my head, and they are so hard ..My BP has become unstable, and my breathing labored, among other symptoms. I try to be optimistic, but I fall in to despair 🙁 I do not know what to do ..hold longer in hopes of stabilizing, or proceed with a cut ..
    Thank you again justajem ..Be well ..

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  14. Dear Monica,
    I really appreciate your own website and I have searched it for thoughts about several conditions and how they can be healed by using holistic treatments. It’s excellent information. I also read your testimony on how you got roped into psychiatric treatment while using drugs, supposedly both hard and soft. You also mention difficult events in your background, something that many authors are now writing about, particularly in childhood (Adverse Childhood Experiences.)

    Although not everyone goes into psychosis from drug use and a few people come out of unscathed, isn’t it best to warn people that drug use (including marijuana) may rope you into the mental health system for a very long time? It doesn’t seem that we are appropriately warning people of this potential, particularly if they begin before the brain stops developing, age 25. A friend of mine’s son went into a psychotic break from pot that lasted 10 weeks. He starting using recreationally at age 19 and then he used it for pain. She said he never would have tried it if knew that it could trigger the bipolar label/disorder. Why not warn people?
    This young man became psychotic with using marijuana only one time. http://www.psychiatrist.com/PCC/article/Pages/2017/v19n01/16l01993.aspx

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