Withdrawal Research Forum: Relief at Last?

Print Friendly, PDF & Email
October 7, 2015 | 32 Comments

Comments

  1. Sounds like this guy has a VERY mild version of discontinuation syndrome, and still has symptoms from it…so I cant see his drug being a miracle cure

  2. In April 2002, aged 22, I was put on 30mg daily of Seroxat. My behaviour changed completely within a few days. I don’t remember much at all of the time I was on it. I do know that at the end of the first month I had a massive rage attack and drove my car through the local psych. unit front doors in a desperate attempt to get help. I also know that at the end of the second month I had another similar attack. Luckily my parents managed to hold me until police and paramedics took me away. At the end of the third month I again had a similar reaction. Again the police and paramedics helped me as I tried to jump out of my bedroom window. By this time I had voices telling me to hurt others or hurt myself. That night my mum came to the unit and described how my behaviour had been and I explained about the voices for the first time. Two young psychiatrists took me off Seroxat. I had two days of 10mg. then nothing. Cold turkey was nothing compared to being on Seroxat although I did cut my wrists during that time.
    The voices stayed. I was put on lots of different antipsychotics and the old type of antidepressants from then on. I am now on Quetiapine and Depakote.
    Throughout the time since the Seroxat days I have the voices with the same message. Sometimes they stay under control but every now and then they become much louder. When this happens I can’t sleep, can’t eat, can’t relax. I am irritable and completely exhausted. I feel like my brain is fried. I usually end up in the unit where the medication will be adjusted or changed. I am always being told that I am unusual because reducing the dose usually works better for me than increasing it.
    When I have the better spells I am always very tired, have joint and muscle aches, cannot stay asleep, cannot stay in bed, have a poor appetite, cannot concentrate very well, feel as if my head is full of cotton wool, have panic attacks and often have a low mood.
    I feel as if Seroxat killed me really. The person I am now is nothing like the person I used to be. I completed Health and Social Care Level 3 although on Seroxat. My plan had been to be a social worker. Seroxat ruined my plan. I am now unable to work physically and mentally.
    I’m not sure how many of the problems I have now are due to Seroxat and how many are due to all the other medications I’ve been on since but I do know for sure that the voices came with Seroxat and are still here. No medication seems to change that.
    Recently I was advised to join a Hearing Voices Group so that I can learn to accept the voices instead of fighting against them. I have found this group really helpful. I am usually very shy of talking about my feelings but there they could hardly shut me up. I think it was because we were sharing the same experiences.
    That night the voices were quite loud but I coped with them without panic. I hope that this improvement continues. The only thing that has helped me before is a course on Coping Skills but that only helped when the voices were fairly quiet. I really feel that this new group might help me to move on.

  3. This story strikes a chord with me. Cardiac issues are literally life threatening or potentially so if misunderstood. When no one understands and when no one will attribute what you are going through to a drug you have taken – you have a problem. The fear you feel when you experience symptoms which are then medicated with drugs which cause more problems is difficult to describe. Most people are able to trust their doctors in situations when their heart is at risk.
    However, due to physicians not recognising, reporting or acknowledging the cardiac implications of withdrawal syndromes those of us who experience such symptoms are put at risk. The risks are both physical and psychological. The physical ones come from drug interactions and treatment interactions, but being unable to trust someone as important as your cardiologist is even harder.
    Trying to tell him/her that you are experiencing something which medical science dismisses as a concept ( a withdrawal syndrome) when they already have you pinned as a mental health patient, leads to an impasse, trivialisation and denial of the symptoms you report which are caused by their actions and treatments.
    I feel for this woman and unfortunately, know how she feels. This is important research. Please show your support for it.

  4. Interesting. After 5 years of Paxil withdrawal syndrome, I developed lone atrial fibrillation at age 59.

    As withdrawal syndrome made me hypersensitive to neuroactive drugs, I was unable to take any of the drugs used to control atrial fibrillation. I endured violent bouts of atrial fibrillation, lasting 4-6 hours or more, every few weeks for almost 3 years.

    Then, the bouts got worse. In June 2013, I opted for an radiofrequency catheter ablation — fortunately, I live near a world-class ablation center (San Francisco).

    The ablation was successful, I haven’t had a bout since. Again, because of prolonged withdrawal syndrome, my nervous system was fragile and recovery from the procedure was slow, taking about 6 months.

    Nine years after going off Paxil, my nervous system is stable — no more sleeplessness or surges of “anxiety” or other strange feelings — but still hypersensitive to drugs. As I’m 65 now, I’ve developed other health problems that may or may not be related to prolonged withdrawal syndrome, which destroyed my career and took nearly a decade from my life.

  5. SSRIs certainly screw you up in a multitude of ways and rob you of your life. My experience is that the withdrawal effects increase in intensity and complexity over a considerable period of time – years – you just have to hang on in there, clinging to the planet by your fingernails as all kind of hell goes on. Even after many years you can never forget what it did; the memory of it is always there, there is always the gap between life before SSRIs, the insanity whilst on SSRIs, the hell of recovery and the “how the hell did I get here, who am I now and what am I now supposed to do now” stage of final recovery.

    A lot of what I suffered/suffer I know is down to SSRIs, because my symptoms mirror those of so many other SSRI victims. I wonder if the rare type of lymphoma which developed in me during my SSRI days is connected with their use, or whether the lymphoma is a completely separate issue? I have found no data which suggests an increased incidence of lymphoma in SSRI users, but one never knows…

  6. I guess everyone knows my story. Just wanted to share again in the hopes of some treatment options becoming available in the future.
    Took SSRIs for 4 years. Stopped by tapering by skipping doses that took 6 weeks. I tried reinstating but with an SNRI but had a severe adverse reaction. 38 months completely drug free i am still in acute withdrawal dealing with over 60 withdrawal symptoms on a daily basis with no let up or improvements. Im 26 turning 27 this year.
    My symptom list and drug history can be found here and permission is given to use this info for your study.
    I would appreciate any feedback or recommendations
    http://www.iwontgiveuphope.weebly.com
    Scroll down to the bottom for the symptoms list

  7. Boy – I made an appointment with my GP this morning because this summer has brought me an appalling resurgence of withdrawal symptoms (from olanzapine mainly I guess) which have been increasingly hard to tolerate. So much so that I couldn’t write an update to my story (Sally’s Story/ Back in Olanzapine Waters) because I thought it would be just too catastrophically depressing to read..I made the appointment before reading this, because I discovered I had hypertrophic myocardiopathy a few weeks back and wanted to talk about it a bit more. Not with any great hopes of getting sensible advice, given that I prised the info out of the GP by asking firmly what he meant by saying that a recent ECG showed that ‘your heart is working a bit hard.’

    How would the Rxisk team advise me to raise the issue of DA’s experiences?
    I have intermittent A Fib but it’s nowhere near bad enough for him to prescribe either drug (I think Multaq can only be prescribed once all other avenues have been explored? Which suggests it’s either very poky or expensive or both?)
    And it won’t be easy as well, because I’ve spent the past 3 years vociferously refusing to take warfarin/pradaxa and being bolshie about medication generally.
    I’d be an exceptionally willing guinea pig to support this line of enquiry but what’s my best strategy for explaining/getting the GP on board? Any suggestions at all gratefully received..

  8. I wish I could give you some good advice as to how to get your GP on board…but I’ve had no success myself! Unfortunately, in my experience, the medical profession do not support withdrawal syndromes as a concept. We need this research to prove that they DO exist and that our suffering has been genuine. Future sufferers need to be taken seriously.

    In all that I have been through with SSRI withdrawal, not being supported or believed, and indeed being invalidated and dismissed, has been the most difficult thing to deal with.

    We need to change this and the only way is to speak up collectively and provide the evidence which the medical profession are presented with, but choose to ignore and under-report.

  9. I was on a cocktail of psych meds for 15 years before finally getting off of them in 2010 after a very slow taper. About a year before I finished my taper, I started developing mysterious narcoleptic like sleep attacks after dinner no matter how little or how much I ate. To date, the problem has not been solved in spite of consulting with several doctors and trying several remedies on my own.

    Obviously, I can’t prove this was related to being on psych meds but it just seems like something totally messed up my circadian rhythm system that I have not been able to recover from. Psych meds are known to do this so I don’t think I am totally off base although again, I can’t offer definite proof.

    Thanks for this site, Dr. Healy.

  10. Thanks so much for the most needed research to save thousands lives that are suffering the incredible torture and more that comes by the crisis in medical industry and practice. This is nothing less than a god rescue.

  11. Thank you so much for planning research on protracted withdrawal. It’s badly, badly needed.

    I can’t wait for the day when I can hand your research paper to my ignorant doctors and say “Here is what I told you from day 1 since my adverse reaction. Written in a scientific paper”.

    If there’s any way we can help with the research, let us know. IT skills? Help finding participants?

  12. Hi David

    If you are thinking that the multaq is something that helps in protracted w/d and this thins the blood would taking an aspirin help the ones of us that cannot get multaq from the doctors.

    thanks, Christine

  13. I am a 22 year old guy who was prescribed prozac in 2014 for anxiety and excessive worrying about everything, after 2 periods of prozac of 4 months each one, I became emotionally numb.

    Before prozac I was someone highly sensitive with deep feelings and empathy and now I have problems to care about anything, it’s like my personality has been erased to create a new one that I hate.

    I have read that ssri changes the personality of those who take it, well that happened to me and I hate my new personality every second of my life now.

    I also lost my interest for girls, my sexuality has been erased too.

    I stopped prozac almost 4 months ago and I have noticed slow reversal of the changes that prozac made on me, but the reversal is still maybe a 5-10%…

    I was not aware this was possible and I naively believed prozac was going to cure my anxiety with no side effects… now I miss my anxiety, it was part of my personality.

  14. I got a sore hand from using the key board too much doctor said i had a chemical imbalance and it was a matter of finding the right medicine for me was given amitriptline, nortriptyline, venlafaxine and clonaxepam . I was assured it would heal my sore hand.
    I had no idea of the nature of these medicines.

    Being fanatical about living a healthy life i asked if these where addictive i was told NO they werent i asked any side effects i was told No just a dry mouth.

    When taking ven. i complained of nerve twitching and obscene fatigue and was told to double the dose. I CT the ven. and (not told anything about need for tapering ) then exhibited uncharacteristic tearfulness and anxiety type panic symptoms.

    Then i made a big mistake i presented to the doctor and said there is something wrong with me but i dont know what.
    No questions or discussion whatsoever and was given a script for paroxetine. i had no idea of the nature of this drug and again asked is it addictive and was told NO i asked any side effects and was told NO.

    The rest is history an addiction for many years and 3 years of hell getting off. No human should have to suffer what i suffered daily for that time. I am 5 years drug free and left unemployed and very damaged. No one can hold down a job and go through this.

    I also look forward to your study in this area.
    My voice strength has been ruined i would like to know if that will recover as well as other parts.

  15. PCNG,

    I would be very careful about telling people there is no recovery. As one who hates what I call “optimistic BS”, I think at the same time, we can’t be telling people there is no recovery at all from these meds.

    Theon, being only 4 months out, you still have alot of recovering to do from psych meds so please don’t give up. Seeing some reversals of the damage, although small, is definitely a good sign and in my opinion bodes well for you. Please don’t lose the faith.

    By the way, I didn’t psych meds could wipe out my personality either but they sure did. It was scary how little I cared about issues that I should have cared about. You hit the nail on the head with your comments.

    • Compsports

      I know what you mean and I understand your comment, but I know for me (six and a half years in recovery) and for many others truly affected, there seems to be no complete recovery. Although victims may eventually recover from some of the damage and symptoms, e.g. the brain zaps eventually stop, there is still the recovery involved in trying to rebuild a life and a mind that has been ruined not just by the pill taking, but by the pill withdrawal process as well. Even though I am six and a half years free of the poisons, I am, inter alia, left with the most devastating physical symptom of all and with that gone, my life rebuilding possibilities are severely impaired.

  16. Anything that calms the nervous system or the heart more directly can help with some of the dysregulation and pain and hyper vigilance that often marks withdrawal. The thing is what that might be can differ greatly from person to person. I did use pharmaceuticals the first two years in micro doses (off and on) to do just that. I tried a large variety and they all worked briefly…helped me get through some of the worst nightmarish months and years of this stuff…but because of extreme hyper-sensitivity they did not remain an option…and they actually ended up aggravating the dysregulation.

    I now use a variety of nervine herbs that I rotate. I do DIY exercises to stimulate the vagus nerve too. That’s very helpful actually. I’ve come up with dozens of ways to help strengthen and slowly regulate the nervous system. It’s an ongoing adventure.

    With herbs there are literally hundreds of possibilities. Herbs are lovely and they are gentle and they seem to slowly heal the system over time too…along with all the other exercises and practices. Unfortunately I didn’t tolerate them either for the first several years. And of course after the first 2 years pharmaceuticals ceased to be an option even when using micro-doses…

    This story seems pretty idiosyncratic to this individual which is the way it goes with protracted withdrawal…we find our own way…with the support of others who get that.

  17. I took Paxil for nearly 10 years and although I discontinued very slowly over the course of 2 years, I was slammed with terrible Long Term Withdrawal. I was very sick for 3 years and had to give up my career as a result. I experienced crippling fatigue, muscle/joint pain, terrible digestion problems/pain, headaches, dizziness/vertigo, electric zaps in my face, confusion, difficulty concentrating, impaired memory, heart palpitations, restless leg syndrome, and difficulty sleeping. I found that all my symptoms would get worse if I were exposed to stress. I have been drug free since March 2009, but I have never been the same since. I was diagnosed with Fibromyalgia in 2011 and even to this day I suffer from chronic pain and headaches (something I never had prior to this prescription drug debacle). To this day, I feel my Fibro has actually been CAUSED by 10 years of Paxil use, followed by cessation of the drug. Clearly the serotonin manipulation from Paxil has done something to alter my brain/body.

  18. I hope this information goes mainstream soon because everyday these pills are getting handed out like candy. More and more people are being harmed without any warning. Most doctors are flat out ignorant and uneducated about what they are prescribing. I for one have had my life come to a complete standstill unable to work, exercise or even have any piece of my mind due to unimaginable physical and mental symptoms. 2 weeks I was told of any withdrawal symptoms. Gee thanks Doc! Instead of helping me you basically lit me on fire than kicked me in the groin! Its the same story for all of us. Get abused by medicine than return to your doctor for help and be told that your crazy. Amazing Healthcare system we pay into. Truly torturous and criminal what is happening. The only good thing that will ever come out of suffering this bad, is that once you feel good again you will live life like never before.

  19. Glad to see the medical community shine a light on this.

    I only recently found out about protracted withdrawal after googling “relapse after coming off antidepressants” and stumbled across an online forum (survivingantidepressants.org) that opened up my eyes to what I was really suffering from. I started experiencing anxiety, panic attacks, insomnia, and eventual return of “depression” after tapering off Effexor, which I was on for just over 3 years. I had no idea that 2-3 months after taking my last pill, I would experience worse symptoms than I ever did before. I feared my depression was returning again but the symptoms felt new, namely the anxiety, stress, and severe insomnia (no sleep or 1-2 hours sleep daily). I experienced heart palpitations and have an irregular heartbeat sometimes. I only recently discovered that psychiatric medication also affects your heart rate.

    After trying a flurry of new and old psychiatric meds, I’ve reinstated Effexor at a low dose just so I can function a little. I’m also seeing a therapist regularly and an acupuncturist to help with the side effects and monitor/treat my heart rate throughout this process. I hope to be able to come off it completely in the future with a much slower taper.

  20. I took nitrazepam for 40 years for myoclonic epilepsy. I also took antidepressants for almost 40 years (tricyclics, MAOIs, SSRIs, SNRIs), most recently effexor for 15 years. Tapered off 5 mg nitrazepam for three months. Six months delayed reaction before going into acute withdrawal. Two years bedridden. Loss of sensations from the waist down, partly incontinent, cognitive functions terrible. Could hardly lift head off the pillow. At 18 months off, I was able to sit up without head supported by pillows or cushions. At 24 months off, I could walk for short distances outside. At 30 months my cognitive functions were good but physical functioning deteriorated. At 32 months I remain in bed waiting for physical functioning to returen. At about one year I realised I was no longer depressed. I could feel my emotions, I did not feel alone as I had done for 40 years. I have had no anxiety, no depression despite the terrible physical symptoms I have endured (head pressure, nerve pain, brain squeezes). At no time did a doctor realise nitrazepam was making me ill. I no longer have myoclonic epilepsy the reason for the drug in the first place. I tapered off effexor 225 mg during the past two years and had no adverse reaction at all. All my symptoms have been caused by benzodiazepine withdrawal. My GP and psychiatrist said it could not possibly be benzo withdrawal because of the six month time delay before acute symptoms set in. I have lost four decades of my life to that drug. I am so very angry.

  21. Hope says:
    Hello Fiona I just want to reply by saying you are the most courageous person I have read about so far and I want to say congradulations for Doing what you have done it takes a lot of strength and courage to do this and you are truly amazing and I can understand the absolute anger you have but try not to hang on to it too long. However you are justified in feeling this way that they have use you this way. I know the feeling that you think you are truly crazy when you are not. We only have one life to live and we want to live, love, and laugh this is our true right, not to be stuck in a hazed drug out feeling . Shame on the health system for failing you and thousands of other poor unsuspecting people out there what a shitty thing to do. I too have been mislead for 22 years that I could have been happy healthy and just be myself that was lovely,kind ,natural, and so called normal. All of this because of a loss of a child and a marriage which was not going to work anyway. But loosing custody of my first child as well because of these bloody drugs shame on these so called professionals for hurting us this way. I do have 3 great kids they are older now and my last one a girl is ready to go off to collage soon. We live on a beautiful lake and I am truly grateful for my life more and more each day. It’s been hell getting off these drugs and was on 20 mg pill for 22 years but still has done damage to my sex life, relationships,love life, because it truely ruins the great love you have for others, and cuts off feelings, these are horrible drugs. We are suppost to feel our feeling in life it is what makes us human for god sake, without that what are we. I am not downplaying loosing my second child but I should have been able to grieve for that child naturally and had someone to help me through the process not be drugged for it. I was a very sensative young women with a lot of heart and feeling, I am a redhead with freckles and believed in living a natural lifestyle, I never was addicted to any substance or would I even think of it. I would not even take birth control because I felt it was a bad drug. I was convinced by a professional that what I was takeing was not addictive and would help me what a crock of shit I was fed and by the time I was well on my way I had difficulty getting off, all the time not feeling right and truly thinking I was a nut case. God when I was younger I was scared of anyone that seemed remotely nuts I would steer clear of these people not knowing I would become one. How ironic is that. I hope that one day everyone stuck and damaged from these drugs are compensated financially for the damages done and for all the money the so called professionals are making off us. They don’t know a dam thing about what this is doing to people’s minds. But anyone on them do first hand. There is hope for people after all it is my name and I beleive we can get through this and live a better life, we need to live as well as we can because we cannot go back no matter how much we would love to. So good luck and love to every one out there and do not loose hope. Thanks for listening

Leave a Reply