The last post outlined the horrors of dopamine agonist withdrawal syndrome (DAWS). This week’s features the equally grim horror of dopamine antagonist withdrawal syndrome (DAAWS). The dopamine antagonists include the antipsychotic, anti-nausea, anti-itch and other groups of drugs.
The antipsychotics were the first of the modern psychotropic drugs to be linked to severe withdrawal, but even so few doctors today are aware that there can cause dependence and withdrawal or how bad the problems can be. These drugs are linked to one of the most severe examples of tolerance and dependence leading to a debilitating legacy effect – tardive dyskinesia. My first brush with the fact that dopamine antagonists can cause withdrawal came when Carole came to see me in 1996.
Carole’s story
In the early 1970s, Carole, a 36 year old woman with no history of mental illness suffered a psychotic breakdown in stressful circumstances that would have led anyone to breakdown. The stress was discounted. She was diagnosed as having a paranoid psychosis, hospitalized for two weeks and treated with Stelazine (trifluoperazine) 10mg tds and an anticholinergic drug. Her Stelazine was reduced on discharged to 5mg tds and after 6 months to 5mg per day. Her doctor, however, having decided she had schizophrenia, decided to keep her on treatment indefinitely.
A return of the illness or something else…?
Despite being on a treatment that would slow her up and demotivate her, she went back to university, got a PhD degree and became a researcher. She complained of lethargy, weight gain and dysphoria and after 16 months when these complaints seemed to be falling on deaf ears, she stopped treatment. But stopping led to nausea, stiffness, pain, headaches and acute anxiety. When she restarted Stelazine, these symptoms cleared up immediately. Her doctor left her with the impression that these were all signs of her illness coming back.
Twenty years later a second effort at withdrawal had the same outcome. A year after this she came to me still on Stelazine and an anticholinergic. I thought stopping her anticholinergic might be a problem. It wasn’t but stopping her Stelazine even by reducing 1mg every two weeks produced stiffness and headaches and then nausea, anxiety, tremor, hyperalgesia – pain on brushing her hair for instance, anxiety especially around her heart, mood instability, a sensitivity to emotional and physical stress, disturbed sleep and concentration.
She was simply not able to get off and stay off treatment. We finally opted to keep her on a low dose of Stemetil – but this anti-nausea agent is really just another antipsychotic.
Held back by the meds
A few years later she developed breast cancer. There was no history of this in the family. But antipsychotic drugs increase breast size and stimulate activity that seems likely to increase the risk of breast cancer. The greatest tragedy was that this was a high-flying woman who ended up living life carrying an enormous weight on her back. She achieved a lot but could have achieved so much more if not held back by her meds. For others the problems can be worse in that the single best way to relieve the dysphoria that antipsychotics cause is red wine and being hooked to these drugs can in this way lead to alcoholism.
In some cases of withdrawal, antipsychotics can trigger a neuroleptic malignant syndrome that can be managed by benzodiazepines. This is particularly likely to be the case if every step down in the withdrawal taper produces very marked anxiety and possible confusion or disorientation. In this case, it is worth trying high doses of benzodiazepines after each step down to smooth the taper.
Symptoms on stopping – antipsychotics
The Table below gives some sense of the Symptoms on Stopping these drugs.
A few points to note. Some of these drugs like amisulpiride and sulpiride are available in Europe only and this is why they come up with zero values across the board. Some of the older drugs such as perphenazine shows as having lower withdrawal problems than Zyprexa (olanzapine) or Seroquel (quetiapine). It likely is better than either of these two newer drugs when it comes to withdrawal problems but the main reason they show up as worse is that the data here is based on FDA data from 2004 and perphenazine, trifluoperazine, chlorpromazine and older drugs were being used much less by then.
The Clozapine group of drugs that includes Zyprexa and Seroquel are noted as having some of the worse withdrawal problems. We are missing data on Clozapine at the moment but will add that data and others in due course. Lilly may have received marketing authorization to claim Zyrexa was useful in the maintenance treatment of Bipolar Disorders largely on the basis that it causes withdrawal problems and not stopping leads to an impression it is providing some help in maintaining wellbeing when in fact the drug is the problem that the drug is often treating.
Quite strikingly the relatively recently released Paliperidone (Invega) comes with significant dependence and withdrawal problems. The haloperidol group of drugs of which Paliperidone and Risperidone and Ziprasidone are included all have problems.
The missing data may give the impression that DAAWS is not as common as withdrawal from benzodiazepines, mood stabilizers or antidepressants but it is in fact every bit as bad. In addition to tardive dyskinesia, these drugs produce a well recognized tardive dysthymia and tardive akathisia along with the kinds of stress intolerance, temperature dysregulation and other problems that Carole had. See the RxISK Guide: Antipsychotics.
| Drug | SOS | Abuse | Addiction | Dependence | Intoxication |
|---|---|---|---|---|---|
| Amisulpiride | 0 | 0 | 0 | 0 | 0 |
| Aripiprazole Abilify | 114 | 61 | 27 | 13 | 670 |
| Chlorpromazine | 30 | 9 | 2 | 1 | 78 |
| Flupenthixol | 0 | 0 | 0 | 0 | 0 |
| Haloperidol | 94 | 49 | 29 | 18 | 322 |
| Iloperidone | 2 | 0 | 0 | 0 | 12 |
| Molindone | 0 | 0 | 0 | 0 | 2 |
| Olanzapine Zyprexa | 283 | 161 | 157 | 86 | 972 |
| Paliperidone Invega | 35 | 41 | 13 | 13 | 359 |
| Pericyazine | 0 | 0 | 0 | 0 | 0 |
| Perphenazine | 4 | 1 | 1 | 1 | 8 |
| Quetiapine Seroquel | 809 | 367 | 253 | 211 | 1600 |
| Risperidone Risperdal | 253 | 164 | 113 | 48 | 965 |
| Sulpiride | 0 | 0 | 0 | 0 | 0 |
| Tetrabenazine | 5 | 5 | 0 | 1 | 27 |
| Trifluoperazine | 21 | 1 | 4 | 3 | 7 |
| Ziprasidone Geodon | 199 | 42 | 128 | 110 | 389 |
| Zopetine | 0 | 0 | 0 | 0 | 0 |
| Clozapine |
David Healy says
Prog Neuropsychopharmacol Biol Psychiatry. 2007 Oct 1;31(7):1500-3. Epub 2007 Jul 13.
Olanzapine withdrawal/discontinuation-induced hyperthermia in rats.
Goudie AJ, Cole JC, Sumnall HR.
Source
School of Psychology, University of Liverpool, Eleanor Rathbone Building, Bedford Street North, Liverpool, L69 7ZA, UK. ajg@liverpool.ac.uk
Abstract
In female rats olanzapine (4 mg/kg b.i.d., i.p.) induced acute hypothermia, followed by very rapid full tolerance. With more prolonged treatment (over > 10 days) the hypothermic effect of olanzapine was reinstated. Subsequent withdrawal after 18 days of treatment induced very rapid onset (within 1 day) hyperthermia, which was time limited, dissipating completely over 3-4 days. These findings are similar to previous findings with clozapine [Goudie A Smith J Robertson A Cavanagh C (1999). Clozapine as a drug of dependence. Psychopharmacology; 142: 369-374.]. Although the mechanism(s) involved in the secondary hypothermic effect of olanzapine are, at present, unclear; the withdrawal hyperthermia observed represents the first report of a clear discontinuation effect of olanzapine. Such discontinuation effects are probably observed with many antipsychotic drugs. Since they have been suggested to facilitate relapse to psychosis and to interfere with subsequent clinical responses to antipsychotics, they merit further detailed analysis in both clinical and preclinical studies.
ASweet says
I recently kicked a first choice combination of clozapine, lamictal, and then zoloft. I fell into NMS and rebound psychosis but I had to stop because I was already very sick. Withdrawal could not be abated initially in a psych ward with Zyprexa, Haldol, Ativan, and other drugs. Finally i was discharged while still withdrawing. Then i ended up in a psych hospital and convinced them to stick with 400mg of Seroquel. I am a 3.7 student but clozapine screwed me up so bad that i could only go to school full time and not even hold down a job (in the end i was sleeping 9 hours a day at least and taking my meds 10-11 hours before i woke up just to function during the day). My doctors ignored the significant weight gain and constant headaches and chills, the severe mental dampening and all that goes with it and i lost 9 years to this stuff. Even now my head is clear and I am losing the 90 excess pounds i gained but i feel very sick every day. I have had my blood checked for hep and aids and negatives so I don’t know what else to think other than i am probably going to die from this stuff. Not that anyone really cares it seems. I fight to work everyday but the withdrawal has to be done right and I never had hallucinations except from withdrawal and amphetamines and hallucinogens, from which i have been clean from almost a decade. I don’t think people understand what this is like and I honestly don’t fear death anymore. Not to be cynical but i do need help and now. Just food for thought.
RizzyCat says
How are you doing now? Do you think exercise can help? Thanks ….I do hope you are feeling better!
Christopher says
I’m in kinda the same place. Off clozapine a month, can’t sleep, it’s really bad. They gave me Imovayn to sleep, but I can’t do this forever, either. I’m scared of life right now! I hope you get help
Mark says
Hi , I know how you feel . I came off Olanzipine ten years ago and I never slept for several months with the worse withdrawals I have ever experienced and lost a significant part of my life to these drugs . I relapsed 4 years after and they put me on Quetiapine and again I’ve lost a huge part of My life . I gained so much weight and lost the only lady I ever loved due to lack of sex drive which didn’t happen on Olanzipine . I tapered the Quetiapine down to just 25ml from 375 ml and things were going great until I stopped the 25ml and the withdrawals were so bad I had to go back on the 25ml , but I’m not going to lose anymore of my life to these awful drugs which the psychiatrists don’t care about as long as they give a script to say “ they’re helping “ they know the dangers and will not listen .
We lose so much of life and miss out on so much that it has to be said these drugs should be stopped as they ruin a lot more lives than they help .
So now I’m on 25ml Quetiapine and can’t get a lower dose here in the UK , I’m going to have to stop and accept the withdrawals and hope that it doesn’t lady several months and another seven to recover . We need more help that’s given and we should not have to fight with services to get such help for the withdrawals. I’m now 49 and lost 20 years and I do not have youth on my side this time around and I’m so dreading it , but I do know that once through and off the meds and free that there are better days where you can eat , enjoy the sun , talk to others without being afraid and with some help from sleep aids some natural sleep, but it’s a long time coming when it’s a 24hour day with nothing but despair and pain .
I wish everyone here all the luck in the world, all the hope and all the very best life can give as you all deserve it as you too have lost a lot of years , I hope you get those years back . Take care and good luck , from Mark .
Jacob says
Hey
I was like you. I make my back story that the government paid me to do an 8000 hour apprenticeship in market research which I applied directly to curing my personal schizophrenia. I made great gains but we are going to have a hard life. The antipsychotics cause 10-25% brain loss in monkeys after 3 years, and in all seriousness will likely have a similar effect on us. The concepts metabolic correction and neurogenesis can give you a second shot at life but it sounds like you have more energy than I do. I sleep 10-18 hours a day. I agree I’m schizophrenic but when I make a solid case that the disease is cureable, my care team gets passive aggressive and dismisses me. I get 30 mintues with a shrink every 9 months or so, to explain a 15 hour PHD’s thesis history. He discredits me and insinuates if I want to cure the disease I have to go to school like everyone else and become a doctor. He attends pharmaceutical conferences with the rest of the staff.
Adria says
Are you still taking olanzapine? I’m not sure what to do after 1.5 years of taking it in now at 2.5 mg and I feel like it’s doing more harm except for ability to sleep.
Sam says
How do you cure it? Do you have any info to share?
David Healy says
Laz Go commented on this post on Facebook.
Laz wrote: “I have tried 4 times in the past 4 years to come off olanzapine, I simply cannot do it, I reduce slowly and when I get to the low dose 2.5mg olanzapine I experience terrible problems.”
Reply:
Can be very difficult. The current recommendation is use a benzodiazepine possibly with an anticholinergic to help and taper the last bit very slowly
lisa says
Hi
I tried and finally succeeded..
I researched and came up wth this:
– didn’t sleep for 2-3 months knew it would b tough
I engaged an acupuncturist and had this x 2 weekly to help with anxiety and severe insomnia
I reduce to tiny bits of powder, then wen t cold turkey, needed pamadene for severe head aches, drank so much water…my brain wanted it so bad…..everntuall after months the craving went- i did this looking after my 2 kids, and keep a psychopathic x away… can do it …u can b free to please email me if you need support it was absolutely awful and I wouldn’t wish it on anyone my friend who was a psychologist said many people just cannot do it…it is highly addictive…..you are worth it please please try till you do…dont worry about not making it the first time…i had about 20 attempts Lisa
Bobbie Lynn Wungnema says
Lisa can you help me with this. iv been off of zyprexa for 52 days still not feeling real good.went cold turkey from 2.5 no one to help me with morning is the hardest how long can this take
Jasmine says
I thought I could do this. I thought it wouldn’t be so bad. I thought maybe a month of misery, and it would all be over with. However, these posts have me feeling hopeless. I have to fight in court for my son back, and I need to be mentally competent to do so. I went from 15 mg to 10 mg for 10 days, then down to 5 mg for 10 days before I couldn’t handle the unreasonably extreme amount of anxiety. I couldn’t leave my bed, let alone my house. So, I went back up to 7.5 mg, and it’s helped a small amount. My doctor won’t prescribe me any benzodiazepines to help me through this, because she said her practice doesn’t condone the use of them. I have a small amount of Klonopin left from an old prescription, but not enough to make it through months of this. I don’t mind vomiting, nausea, dizziness, even depression, but how long does the anxiety stay this immobilizing?
Bobbie wungnema says
Jasmine I know how you feel have been going through withdrawal symptoms for 72 days now feel so alone. I have to take .5mg of kalonapin just to get around and have been suffering so much. Not enough info on this drug that helps. Let me know how you are doing. I take slot of supplements to help some work but not well. Anxiety in the morning is off the charts feel so psychotic most days email me if you want maybe I can help you
Pedro Vieira says
Jasmine, I’ve been through the same. There’s a science behind tapering, you need to read enough information before you start doing it correctly. Doing it wrong can leave you various months with horrible withdrawal effects.
You’re simply tapering too quickly, a 50% redution over a period of 10 days is too much. Typically people react well to a 10% reduction every month but you might need to go even slower or you could be able to go faster, it varies from person to person but 10% every month is a good start.
Read the information here: http://survivingantidepressants.org
it’s a really good site for people going through this, also don’t rely on your doctor for this.
Chris Schneider says
i find with a lot of drugs i had to withdrawl from. (benzos are the worst for me) reduce 10% of your dose every 2 weeks.
Christopher says
I felt the same, thought it would only last a little while, for me it’s the insomnia, I tapered off Clozapine for about 7-8 months, down to crumbs, and I have had next to no sleep now for almost a months. These posts have left me feeling hopeless too! I walk around in parks at night a lot, just to try to exhaust myself. Thank god for my friend, and my kitty! FB has helped too. I’m drinking a lot now, more than usual. Mornings are the WORST! My anxiety comes from having auditory hallucinations recurring, though I’m not psychotic. It’s very frightening, though, I thought I was the only one you’re not alone Jasmine! I hope you get this. We’ve made it this far!
Russ says
Hi Lisa-Icold turkey seroquel 300mg in may after 3 weeks i reistated100 mg tapered down to 37.5 now.I also will be tapering zoloft 50mg later.im having bad anxiety can ya help out with some guideance.
Russ
Karlene says
Lisa, i am 41 days off Invega needing support. Did you feel shortness of breath?
Christopher says
Yes>>>Go to metal heath today or pun in Withdraw from Invega. I been off in since June and have meany side effects>>It’s hell>>> take Alvan 1gm it helps>>good luck
Kat says
I am on my nineth month since my last dose of invega after being at 12mg daily for nearly 12 years due to misdiagnosis. I know now that I tapered down waaaay too fast, but despite the awful withdrawal symptoms, I’ll never look back. It took about 120 days before I saw improvement, and that only happened because my appointments kept getting pushed back. The worst part was probably the last week of that period where my room mate actually had to talk me down from doing something stupid, but afterward it was like coming back from the dead. It was scary. I thought that I was having a psychotic break because it was such a drastic change, like flipping a light switch. Shortly afterwards I was diagnosed with severe sleep apnea, which they now believe started way back when I started showing “symptoms of mental illness” in my mid teens. The best way to describe being on invega is like there was a wall of ice between me and the world that gradually got thicker and thicker until I could no longer reach out or function. I repeatedly spoke about how I felt like the medicine was “making me retarded” for lack of a more eloquent way of putting it at the time. My memory, intelligence, language ability, cognitive function, hell, my entire personality faded from existence until I was nothing more than a husk. My husband confessed after I “came back” that based on the increasingly rapid decline he saw in me over the past two years, he was convinced that any day he’d come home to find me dead, that he had no choice but to watch the love of his life waste away before his eyes and be okay with that because the kids still needed him, and that a part of him died each day with me. By the time my Dr agreed that seeing how I did without the invega might be worthwhile, I was almost completely nonverbal; I didn’t even have an internal dialogue anymore, I simply existed and nothing more. The two worst things currently are my anxiety and pain, in part due to the PTSD unveiled by all these drastic changes in my life. I’m just living a day at a time, trying to heal from years of self neglect at this point. I’m hoping that by next summer things will be even better. Good luck, friends.
Kat says
I should add that my “taper” took me from 12mg of invega daily to zero in only a month. It’s been rough, but I’m totally convinced that doing so has saved my life. I’ve lost enough years of my life to this madness, and while I’ve read that you can experience withdrawals for as long as a year after your final dose, I think I would’ve lost my mind trying to do it slowly and gently. I can handle life being harder for a shorter time better than feeling like the misery will never end. We all know what kind of dark places that can lead is into.
Patricia says
Hi, we’re you on the injectable or pill form?
Nichole says
Wondering what withdrawals you experienced and any tips to overcome them
Johanna says
Ever since reading that women with “serious mental illness” in the US have three times the average rate of breast cancer, I have looked in vain for someone researching the link to antipsychotic drugs. I think this problem is largely undetected and unreported in the US, based on the figures in RxISK’s database.
Since about 1/3 of drug reports to FDA come from outside the US, when I see a side effect for which more than half the reports are from other countries I take it as a sign US medicine may be asleep at the wheel. Check out these figures for risperidone: 384 reports of “hyper-prolactinemia” of which only 77 are from the US; 389 for “blood prolactin increased” with only 137 from the US; and of the 104 cases of breast cancer reported with a possible link to risperidone, only 16 reports are American (20 are from the UK and 16 from Germany). Yet when it comes to effects that can be detected without a doctor’s help, the picture is different: of 28 reports of “breast enlargement” 20 are American, and 102 out of 143 reports of “gynecomastia” (female-type breasts on a male) are from the US. Something is out of whack here. Given the spread of these drugs — some doctors locally are blithely giving out Risperdal for simple insomnia! — this could account for a not-so-small slice of the growing breast cancer epidemic in this country.
Sally Macgregor says
OLANZAPINE WITHDRAWAL EXPERIENCE
I was prescribed 20 mg daily of olanzapine in 2001, as a mood stabilizer. I had followed the familiar path of diagnosis; depression, severe depression, treatment-resistant depression (eventually ending up with a bipolar 11 label). I was on other medication too – but I’m sticking with olanzapine for this story, as it was the drug I was on for by far the longest, and the events described are specifically related to coming off olanzapine, and what happened thereafter.
I had a couple of goes coming off too quickly, and suffered horrific withdrawal symptoms; headache, agitation, anxiety, insomnia, nausea and vomiting, and feeling appallingly ill. I am vomit phobic, so the sickness drove me back on to the drug, and the symptoms went away.
By 2010, after 9 years on olanzapine I had hypertension, high cholesterol, diabetes, trouble with my body temperature, was seriously tachycardic, and weighed 16 stone. (I was 8.5 stone when I first became ill in 1998). In 2010 I was diagnosed with endometrial cancer, which is linked to obesity; (womens’ fat excretes an enzyme which predisposes one to gynaecological cancer). My surgeon advised me to “get off the stuff before it kills you, Sally”. With the help of my husband Rob and therapist Mary I tried again. I could find no information about how to do it anywhere, apart from vague advice not to go too quickly.
The withdrawal symptom I was most terrified of was nausea/vomiting. In view of this we decided that we would go incredibly slowly, and that Rob would make the drops in dose without me knowing, to avoid anxiety induced nausea. This was possible, as I was taking other medication for indigestion and high cholesterol. Rob gave it me in a pot, and provided I just took it without looking too closely I didn’t notice olanzapine tablet changes in colour or size. We also decided that he wouldn’t tell me when he started the tapering.
He actually made the first drop in July 2010. In December 2012 we made the last drop from 2.5mg to nil. It had taken 18 months. At 2.5 mg I noticed a significant difference; the moronic lethargy had gone and I was moving around, speaking, engaging in life – too many changes in feelings and personality to note here. But no obvious physical symptoms during the withdrawal. We thought we’d done it, the sun had come out in my brain and a new life was beginning.
It wasn’t that simple. From February 2012 the following events happened;
I noticed subtle difficulties with balance, a sense of instability/rocking. Difficulty going upstairs and negotiating my way round furniture. Crossing the road, and turning my head quickly were troublesome.
I went stone deaf in my left ear. I guess this was sudden, as I noticed it when putting the phone to that ear and not being able to hear anything. I assumed it was my daughter’s phone at the time!
Eating was difficult, or, rather, the mechanics of eating were hard. Lifting food to my mouth, talking and eating. Friends remarked that I never ate anything.
4. I had a sense of running downhill and not being able to stop, mentally.
5. I became increasingly short tempered. Small irritations provoked disproportionate responses. I fell out with all my closest friends at some point from this moment onwards.
Losing my temper so spectacularly all the time has nearly cost me my marriage. as well as my dearest friends.
6. My speech was becoming odd – although words poured out, and words came back to me that I hadn’t used for years (“prescient, torpid, metonym”) they came out in bursts – almost staccato. I also swore fluently and inventively – and frequently. I joked that I must have developed Tourette’s (I had no idea that Tourette’s is linked to dopamine).
7. I’ve always had an active sense of humour, even when deeply depressed I could crack a joke. Now it became hyperactive; everything struck me as funny. Reading a comic writer like Bill Bryson was almost painful, I laughed too hard and long.
8. I was feeling generally unwell. I thought I must have a urine infection. Apparently I didn’t, although a small amount of blood was found in my urine.
9. My balance deteriorated. Eventually in March 2012 I collapsed in London, was admitted to St Thomas’s and had an MRI scan. There was no new damage (it was thought I must have had a stroke) but the scan revealed old damage; a hole in the front right temporal lobe of my skull, with surrounding scar tissue. Also two infarcts in the caudate and cerebellum. I had no idea that I had had strokes. For some reason, which to this day I do not understand, the neurologists both at St Thomas’s and later in Portsmouth where I live did not attribute the, by this time severe, balance problems to the cerebellar stroke. They persisted in their diagnosis of a vestibular problem with my ears despite the fact that I had no nausea, sense of spinning, vertigo or dizziness. It was just that the world rocked up and down, backwards and forwards violently when I sat up, stood up or moved my head. Leaning against a wall, it felt as though the wall was pushing me forwards and back. If I closed my eyes, I fell over.
10. Whilst in St Thomas’s I experienced the first bout of acute unwellness. It was so intense that I had a sense I might die. I had no pain, anywhere. I wasn’t nauseous. It baffled the medics, and continued to do so. The closest I can come, is the descriptions people have given when withdrawing from venlafaxine.
11. I also developed severe hyperacusis – I seemed to be able to hear everything, all at once. The filtering mechanism of the ear which perceives some sounds as faint and other closer ones more loudly had gone. In subsequent visits to A&E in Portsmouth, lying in my bay, I could hear, crystal clear, conversations at the far end of the room. Sudden, loud sounds made me jump out of my skin – a dropped fork, a sudden cough.
12. From April 2012 onwards I had a number of admissions to hospital in Portsmouth. These happened when I had episodes of severe unwellness, slurred speech and increased loss of balance. Twice I lost control of my bladder. In July I had another episode of dangerously spiking blood pressure and tachycardia. This led to exhaustive tests to determine whether I had a recognised neurological disorder – MS, Lyme’s disease, even AIDS. All came back clear. I also had some (very unpleasant) tests on my vestibular system – again, it proved entirely normal.
13. Cardio tests did reveal intermittent atrial fibrillation which may have caused the strokes. Olanzapine is implicated in strokes, and cardio-vascular disease. I was put on warfarin.
14. Every time I raised the issue of whether I could be suffering an acute withdrawal/discontinuation syndrome from olanzapine it was roundly dismissed. I gave up mentioning it in the end. “Psychological overlay” was a frequently used phrase. In the end I gave up reading any letters from medics or the hospital, and threw them in the bin. Functional Neurological Symptoms were also diagnosed. i.e neurological symptoms that do not fit known symptom criteria and must therefore derive from “psychological overlay”. It’s a sexy topic among neurologists in the UK and is assuming the status of BPD in psychiatry. I considered it seriously, as I knew I could dissociate traumatic events. But due consideration led me to rejection of the theory. There was so much else happening; hearing, balance, unwellness, appalling temperature dysregulation, continual thirst, severe insomnia, horrific nightmares which could propel me out of bed, arms flailing, clumsiness, toes on my right foot that moved continuously and a sensation in my leg of worms crawling under the skin, daily bouts of acute fatigue that wiped me out. All this did not fit the FNS criteria. I thought maybe I had ME for a while, but again, what I was experiencing didn’t fit. Because I got no help, or affirmation that olanzapine could be the cause, I did a lot of searching for myself. I had to, but it was very lonely.
Now, 18 months after finally discontinuing the olanzapine, some things are settling; my blood sugar returned promptly to normal, and has remained there ever since. My blood pressure has also settled, and my heart rate has gone down to the upper end of normal. After intensive neuro physio, I am managing the balance better – although the imbalance is still there, and worsens when I’m tired, I am learning to cope. The hyperacusis is also settling although some distortion remains.
What I am left with:
Acute bouts of unwellness when I feel I am going to die, every 7 – 10 days.
Daily struggle with severe fatigue
Insomnia
temperature dysregulation, especially at night
involuntary twitching of right shoulder and hand
“moving toes and painful leg syndrome” diagnosed by a neurophysiologist
tingling, painful hands, especially the left.
severe short temper and irritation – flying off the handle
Inability to walk more than a few yards
Continuing balance problems
Hearing distortion, triggered by certain voices – usually female – and telephone dialling tones, and the TV.
Blurred vision, especially after using the computer, or concentrating while painting
Skin problems – diagnosed as acne
Rapid sensory overload when in busy environments such as shops, stations, etc.
In many ways my life is more restricted than when I was dulled with the drugs. Even worse, I am more aware of the limitations, and am deeply frustrated by them. I have a profound sense that my life may not last very long, despite an urgent feeling of wanting to live, and the richness of life.
Betsy says
Sally, I’m so curious. How are you doing now. I’m going through a similar experience after taking Domperidone (dopamine antagonist/antiemetic) for 2 yrs. It is absolutely horrible. This has been going on for 6 months now. The first 4 months were very hard, but seemed to get about 85% better. Then, at about 5 months out I got hit with these symptoms again. My doctors can’t figure anything out and completely dismiss that this was caused by stopping Domperidone use cold turkey. Oh, how I long to feel normal again.
Sally Macgregor says
I am so sorry Betsy – I have only just picked up your reply today, and hope you will look at the site again soon. To find someone else going through a similar experience is wonderful, although I am terribly sorry for the hell you have been suffering. I am just about to write an update, which I will post in a day or so. In the meantime, hang on in there….your experience of being dismissed by the medics is so familiar. Despite a close and loving family and many friends I have never felt so alone as during the past months of continuing withdrawal/discontinuation. Very best wishes
Betsy says
Sally, so curious as to how you are doing now. Would love to hear an update.
Best wishes to you!
concernedHusband says
my wife is suffering after a year of insomnia and anxiety from stopping domperidone. Did anyone find any method for help?
Rubyro says
Anyone who is suffering from Domperidone withdrawal – I was on it for a year for breastfeeding, have been tapering off it for a year now, am down to 6.5mg per day and going very slowly. My symptoms are manageable now – I’ve had phases of very bad withdrawal before I figured out how to taper. I am on the surviving antidepressants forum under my username if you’d like to connect.
Cengiz savran says
Hi
My name is Cengiz and I am writing from Denmark and I have read your story on xrisk.org. And i was wondering how your progress on coming of the olanzapine is and if you are still experiencing the withdrawal symptoms
I too am trying to get of the zyprexa I have been taking it for 11 months now Currently I am on a dosage of 5 mg. I started with 5 mg but upped my dose to 15 mg but that was only for 3 months. Now I’m down to 5 mg again. Right now I don’t know if I am experiencing withdrawal symptoms. I freeze a lot, fever like symptoms, insomnia, stomach cramps etc etc
I am so afraid of this medication because I know it is a dangerous drug. I am afraid that It has caused brain damage.
I know that you are not a doctor but it is nice to speak with someone who has tried the hell herself
I have tried to come of the drug 6 times but unsuccessful maybe because I did it to fast. This time I will do it on a slower pace. Maybe we are talking months
I hope you can answer back because I desperately need to someone who has been there
Best regards
Cengiz
Cengiz says
So sad to hear your story. I hope that you are doing better now. I too am trying to withdraw from olanzapine. I’ve tried 6 times before without success. This time I will go very slowly.
I’ve been on 5 mg Zyprexa for 11 months now and it is a very hard drug to withdraw from. I was wondering how you are now and are you feeling better. Right now I have tapered it to 4,3 mg and will continue with that for a month and then I will go down to 3,75
Please write back so I can hear how you are doing
Best regards
Cengiz
Anne says
Thank you for sharing your story. My son has been on the same meds and his weight has gone up and up. We have tried to get him off Olaz but the side effects are terrible. I wish there was a short way.
Jonathan says
Hi Sally,
I’m contacting you because you are one of the few people I’ve found online who has mentioned being on an antipsychotic for over 10 years and who went off it. I was on it for about 12 years, and about four months ago finished a taper that lasted about three months. The initial month was tough, but I expected all of the wild emotions, sick feelings and sleep issues. My real problems began a few months after stopping. What is surprising me and troubling me the most is what I would call cognitive symptoms, or brain fog. I have had tons of memory issues, getting confused and overwhelmed, major trouble concentrating and even getting a little lost walking around sometimes. Did you go through any of this weird stuff? If so, how long did it last? I would be curious to hear about your withdrawal over the longer term. Most people seem to focus on the first few weeks….It looks like you had a lot of issues over the long term too.
Thanks,
Jonathan
Kristine says
Hi Sally I read your post numerous times,I to am suffering from olanzapine withdrawal and I also went halfway off quetiapine,still on 23.5 mgs and mirtazapine 30 mgs,I went off zyprexa cold turkey last spring without giving it much thought,I took as a prn very frequently for about 6-8 months,I don’t understand why I am suffering so much,the dizziness is horrible,I’m balance is horrible,the depression is awful,this is worse than benzo wd,and I went off benzo cold turkey 9 years ago and suffered horribly,I think these recent wd just added to the misery,I didn’t know any thing about zyprexa wd and quetiapine wd,how am I going to get off the rest? How r u doing now? R u getting better? Where can I find support online? There’s support for benzo wd but not antipsychotic wd.
Adam says
I stopped seroquel or tapered when I got a ear infection in October and I hear frquencys in my head , doctor says my hearing is fine and ear looks ok , it switch’s to the ear I not had a infection in so now I’m trying to think it was the seroquel I get head aches and sometimes sinus ones its so wierd
Lisa says
Sally, Oh my goodness I am so sorry to hear about your suffering! I just started tapering off Olanzapine and I am scared to death! I am filled with so much grief hearing your story and knowing that there are so many of us who are trapped by these pills and are suffering! I would love to hear how you are doing!! I am trying to go very slow with this taper but I seem to go thru hell everytime I try to reduce! I am looking for some hope right now! I pray you are doing better and that I am able to make it through this hell!
Robert says
been of seroquel 2 and a half years after being on it for 14 years one hell of a experince, might even kill you who knows, recommend admitting yourself somewhere to do it taking yourself of it can be dangerous
Ricky says
Did it make you emotionally blunt? Did you suffer muscle spasms, cramps, immune dysfunction, things like that?
Jonathan says
Hi Robert,
I’m contacting you because you are one of the few people I’ve found online who has mentioned being on Seroquel for over 10 years and who went off it. I was on it for about 12 years, and about four months ago finished a taper that lasted about three months. The initial month was tough, but I expected all of the wild emotions, sick feelings and sleep issues. My real problems began a few months after stopping. What is surprising me and troubling me the most is what I would call cognitive symptoms, or brain fog. I have had tons of memory issues, getting confused and overwhelmed, major trouble concentrating and even getting a little lost walking around sometimes. Did you go through any of this weird stuff? If so, how long did it last? I would be curious to hear about your withdrawal over the longer term. Most people seem to focus on the first few weeks….
Thanks,
Jonathan
Ash says
like Sally I was given olanzipine to take (15mg) plus mood stabilisers at the same time for about 4 1/2 weeks. I want to say something not just about how detrimental these drugs have been to my health but also the inappropriate advocation of them.
In my particular case I went to the hospital with the intention to ask an expert if they had an idea of why I felt well given I’d had a case of the blues for 4 years prior and now felt a sense of understanding and compassion for living things and people. I kinda knew why but wanted another oppinion however what I got was a diagnosis of mania within 5min without any regard to my circumstances. a security guard blocked the doorway and my ego was backed into a corner with doubt and claims about me that were not true. Even having said I was going home I was told no 3 times, I felt the only thing to do was to be submissive seeing as the door was blocked by a man about 3 times my size and they weren’t going to let me leave I’d have had to scramble over him and I didn’t think the situation called for that. At first I was told only 2 days and they’d check me over and that it was in my best interest.I eventually agreed but once in there they didn’t check anything, instead It was 3 to 5 days before I saw my first dr and psychiatrist where I was given an ultimatum, lithium or olanzapine. Still No advice or help was given or any looking into the circumstances of why I came to them in the first place. I was told you can’t leave until we (the dr and the psychiatrist) decide you’re better which they backed up with talk about a legal sectioning act or something. being naive I allowed the psychiatrist to convince me that olanzapine was the medication with the least side effects and that it would make me “normal”, (though I’d had no troubles to fix, didn’t believe in medication for help, nor had I harmed anyone or put myself in danger which I would never do. I also had clear insight into my behaviour and thoughts and had mentioned I didn’t want meds). This is why I’m scared for people and myself. at the unit in coffs harbour hospital they were forceful, it just didn’t feel right. it felt more like subjective based power tripping or something else. I nor anyone else would have much chance against the labels and intimidation tactics that are used. Especially if we come seeking for answers, well I did and I got stuck in there for 2 months and went through the definition of hell.
For lack of a better phrase the drugs have caused me some form of permentent mental retardation. Persistence has kept me going and so it will for a few more years. I have a good diet regular exercise and knowledge of how my own thoughts effect my emotions and even having come a long way i still feel disconnected from life, people and music over a year later. Something is certainly missing, it may come back with time who really knows but this olanzapine or moodstablizers did nothing to help me and everything to destroy me.
What it was like on the drugs:
2 weeks on the meds I was in a vegetable state of mind body and emotion. I wasn’t able to interact with most people except others on zyprexa. i lost ability to perform acts of self expression creativity or cooperative play. I was suppressed physically/emotionally and spiritually. Impaired ability to think clearly. was very slow, not just in movement and thought but I noticed that everything was going to fast to me. when I counted out to 10 for example at what to me was my normal speed the clock would show 15 to 18 seconds had gone by. I also had sleep paralasys on a regular basis and nightmares whenever this happened. full of senseless torturing of helpless people, I hate to say it coz I’m a non believer but they were full of what religious people would call demons and no less scary then the definition. I heard from other patients these type of nightmares are common side effects of some of the meds and I think it’s worth noting. my body felt heavy like gravity was increased or my will to move my body was impaired, found I needed to support myself against something if I could manage to get out of bed. I couldn’t tell what was going on most of the time, it was like I wasn’t all there. My awareness was extremely narrow as in sights and sounds took a while to comprehend. the dr would ask me each week if I was depressed and every week I would say I don’t know and I literally didn’t. I had lost touch with my feelings and ability to describe what was happening. I don’t care about the symptoms on the drugs it’s the not recovering and also not a single person in the world would want to put themselves to hrough anything like that yet it is marketed as a good treatment.
the long term effects did not come from withdrawal for me, when I came off them I stayed in a vegetable state for another month. After 6 months I was no longer suffering in a state of termoil just hating how retarded I was. after a year I have all the same symptoms excluding the nightmares and the heaviness just to a lesser extent. still have trouble interacting with others on their level coz I can’t seem to understand the basic levels of connection. people often ask me if I’m ok, beats me what they see but all I know is I’m not all here. Basically I just never came back out of that state, if it was 10/10 before for the symptoms it’s 3/10. The problem for me is my ability to overcome it, it seems only time will heal and it is but my disconnection from seeing the beautiful in the world and really being with people when they talk to me is the big factor. These are the things that make us feel alive. There is so much more I could say but I won’t. Thanks for giving me an oppurtunity to share my experience
Karen Reid says
Hello,I just read your story and I feel so bad u went through all you did.I too have a daughter who is 11 days out of being off the zyprexia and she has currently the problems with coming off it.I see u wrote this years back and so now I was wondering how you are doing known did you get back yourself and if so how long did it take? Thank you so much ! Karen Reid
BROOKE KRAMER says
Geodon has practically murdered me. I had clinical Lyme Disease and was depressed about it. I went to Abbott Northwestern Hospital and was placed on this drug for eight days and showed signs of poisoning with trouble walking and seeing and speaking. I went to four ERs over the course of 48 hours and instead of getting med help was sent 400 miles away to a mental health institute out of state. Six weeks later, I am numb and buzz all over including deep in my body. Have trouble sensing pressure. have issues with clear eyesight and focusing and pupils don’;t dilate in light. I have temperature regulation problems and urinate too often and have buring in my bowels and most of my body vibrates at night. I have psycho dreams every night and am very very very ill. I feel I may lose my otherwise previously very bright mind and am eager for revenge before dying.
Michael says
I was put on Seroquel to help ease the rebound insomnia from Z-Drug withdrawal. My Pdoc said to go up to 300mg if I wanted, but I would only go to 75mg. It still didn’t even let me sleep more than 1hr at a time for 5 weeks (rebound insomnia from Zopiclone can be awful).
I started to notice some stiffness after being at 75mg for two months, so I decided to taper off. However during the taper the stiffness only intensified. I’ve been off for 6 days and I’m still so rigid. It’s really taking a toll on me. This drug should most definitely NOT be prescribed as a sleep aid! I just hope this gets better soon.
Marsha Seaton says
For the past 20 years I have been on every antidepressant antipsychotic for 12 years benzodiazepines for 18 years. I cannot describe the horrors I have been through. But now I am tapering slowly (10%) of the current dose each drop. These drugs almost and may yet kill me. All that I can do is continue to taper and take one minute hour day at a time. Maybe I will survive.
samantha says
Dr Healy,
I am tapering off abilify, and have been experiencing terrible muscle contractions, my brain just seems to freeze and paralyse and my memory is affected. I don’t know if I have TD but no doctor seems to be bothered to find out despite trying time and time again to go to my doctor with the same symptoms. Is there anything I can do to come off the last 3ml. I just seem to be increasing the dosage. I am just worried I may never recover.
S.
julianne says
My son has been exp withdrawal symptoms before changing meds and stopping. I give him raw coconut oil and NAC, Vitamin D 4000diu, light therapy at home and find aromatherapy eases anxiety and aids sleep. The medication needs to be v slowly tapered and if you don’t feel able to discontinue,its prob wise to remain on your safest low dose. That’s typically 2.5 mg. I’d try supplement with nutrition if you can afford to. Yoga is good to learn breathing for panic,anxiety.
Elizabeth says
My partner has been on a variety of meds for his severe depression. Effexor 150 mg for depression with 5mg of Olanzipine. He was prescribed Haldol as the Olanzipine was making his so tired all the time and has been taking them together. He was at 4 mg and early Jan they dropped him down to 2 mg as he was sleeping at work, could not stay awake. 3 weeks later the side effects of dyskinesia were present so dr said to stop Haldol all together. Hoping the dyskinesia goes away but now he is having severe dizziness which is causing problems with work. Is this from the sudden drop in Haldol? Dr. said to drop the Effexor down as that may help with the dizziness but sounds more like a guess. Anything that can be done to help the dizziness? Feeling like this is from dropping Haldol. Any way to help when you have to stop suddendly? Honestly, the side effects of these meds are worse than the original depression. Thanks in advance.
Carsten Agger says
My son was treated with 5mg Zyprexa for about two years, after which he was briefly changed to an SSRI inhibitor, since the new psychiatrist thought he shouldn’t be on olanzapine the rest of his life.
This was a nice thought, but the change produced serious anxiety attacks, and my son did not want the new medication. He was shortly committed to the hospital, where he was treated with olanzapine, which he now also did not want. I should mention that my son is a high-functioning autist and one of his problems is that he doesn’t get the concept of “consequences”. If he doesn’t want the medication, he won’t understand why he should taper.
So after some rough months he was hospitalized and stabilized for ~3 weeks on 15 mg olanzapine. Some weeks ago, he was released and at once stopped taking the drugs. At first, he got anxiety attacks, wanted to be committed, but changed his mind and in the end remained outside. After 8 days he started developing symptoms of catatonia, severe motor difficulty and drooling. This has improved, and he has been briefly able to use a computer (e.g.), but he seems to get extremely tired whenever he tries to do some of these things. Later, the motor problems more or less disappeared, and instead he took to sleeping a lot, interrupted by eating (which is good, because the first week after the cold turkey he slept and ate very little).
I’m praying, fearing bad brain damage and yet I’m swearing that if I have my way, he’ll never ever get back on that horrible drug again.
But this raises an important question: How many of the alleged beneficiaries of drugs like Zyprexa are actually unable to take their medication regularly or unable to understand the consequences of going cold turkey, and how can the doctors even dream of prescribing these drugs in such situations? I don’t quite get it.
Karen says
My daughter sounds very similar to your sons case.How is he doing now? I have had your same concerns and thoughts. Thanks !!
E says
My doc told me to ct off 2.5 mg of zyprexa that i was taking for about a year and a half..i also cted off of 7.5 mg zipiclone and low doses of ativan taken just as needed..its been a couple years now and im still not healed although i do see improvements…will i be ok?
Kristin says
I was diagnosed as bi polar and was tested out on many drugs most anti psychotics. Risperidone being my biggest challenge. I am almost off it now completely but only tapered .25 mg every few months. It’s been one hardest things I ever did. I have gained over 100 pounds, had urinary incontinence, vision problems, breast issues , no menstruation for years, anxiety, trouble regulating body temperature especially at night. Withdrawal symptoms are in sane and make me so mean and agitated. I also am on geodan 160mg and thats my next battle to get off. I am angry dr perscribed these meds to me. I was a healthy young beautiful woman who had so much going on just some depression and mania mainly from being abused by a violent man I left. Now im over 300 pounds and sad lonely, ashamed more depressed with mental fog so severe and trouble speaking sentences without messing up my words, and insomnia and heart rhythm issues from anxiety. I have been to emergency unit over ten times for heart related issues from the meds having ekg and all sorts of tests. Dr never want to take accountability for the meds. They seriously have no clue how hard they have made my life and many others. These death drugs are ruining lives. Im.sure for some they help but for most they hurt. Im terrified to get off geodan adter my experience with risperidone. Any advice please
Randy says
I started tapering off Geodon over a month ago with my Psychiatrist’s help. He dropped me from 160mg daily to 80mg daily and when I told him about the withdrawal effects I had from this drop he started me on a much slower taper.
My withdrawal symptoms include: tight jaw muscles, stomach cramping, headache and terrible anxiety at times. You may or may not experience withdrawal symptoms, but it’s important, in my view, to taper off this medication slowly and let your body and mind stabilize before dropping to the next lower dose.
charlie says
anybody that successfully came off clopixol depot(zuclopenthixol deconaete-maintance treatment) advise please
Kimberly L NEWSOM says
I have been on the invega injections for approx 8 months I have gained ao much weight I would like to stop taking the injections has anyone came off Invega and if so how severe was the withdrawals
Peter Mather says
Hi Kimberly,
I would recommend a slow taper. My experience is that you can step down from 100 to 75 to 50 over about 6 months, but with the step to 50 some symptoms come back a little, then after a month or two they go away (for me). From Invega injections then you may need to switch to either paliperidone pills or risperidone pills. That switch to pills is tricky as its hard to figure out the equivalent dose to the injections. From invega dose of 50 (about 1.5 to 2 mg of risperdal pill) the going off the meds completely gets rough (for me at least). I found that tapering to nothing gets very difficult at low doses, and withdrawal psychosis can easily kick in after about a month or 2 of being fully withdrawn. Invega stays in the body for about 4 months after the last dose, and has a half life of between 30 to 45 days 1 month after the last dose. Nowadays for people on the drug for more than a few years the pros are recommending very slow tapers over years rather than months. The reason is it is so hard to avoid all the withdrawal side effects, especially the psychosis which lands you in hospital again on another treatment order and a higher dose. I wish you the very best with this difficult situation.
Kristine O'Donnell says
I was on the Invega shots for five months I believe. But, I went off of them cold turkey.. I tapered down from 150mg of Effexor once or twice a day to 75 mg once or twice a day and quit the Effexor then cold turkey. Also was prescribed Clonopin 1mg 4Xday that the Doctor had discontinued abruptly while I was hospitalized without giving me another anxiety medication until I begged for some Ativan which they also only gave me for two days and D.C.’s even though I deal with extreme anxiety and PTSD. Was abused and experiencing 24hr trauma.
Kendra Garza says
Hi there,
My name is Kendra. We’re you able to come off invega sustenna?
Jade says
I’m so sorry to hear all of your stories! It outstanded me how little my psychiatrist actually knew when I finally got to see one.
I was suffering from severe anxiety about being psychotic and health plus major panic attacks, after being put on citalopram (SSRI) that worsened my symptoms I was told I had psychosis and was put on Olanzapine 5mg. For the first few days I was completely zoned out and all I did was sleep, as I was so zoned out I did feel better. However, after this short period I just felt so empty and blank and all of my symptoms returned just as bad. I carried on taking it for 6 months with upped dosage just praying it would start working, it never did. I was unable to cry and unable to express my emotions like I was able to before. I also gained around 5 stone and was left very unhappy with myself. I’ve finally decided to come off of olanzapine as nothing seems to be working, I’ve been suffering with extreme insomnia, anxiety, tremors and loss of appetite. I’m 6 days free of olanzapine and have been feeling very depressed with a lot of crying spells, maybe the changing in my moods? I’m able to feel more though so that makes me happy.
My partner was also put on olanzapine 10mg for paranoid schizophrenia and experiences severe memory loss, bad dreams where he wakes up and screams, disorientation, severe weight gain, spells of making no sense (will say something that makes no sense and then won’t remember saying it). Many people have commented that he just doesn’t seem himself, he seems more empty. He states that he still has paranoid thoughts and often feels suicidal. However, his mental state in regards to paranoia is a lot better after starting olanzapine… But it really changes how you are as a person.
Valerie says
Hello
I am a french woman and I am writing from France. I am taking a neuroleptic Solian and have no information here in France about it and unfortunatly not in USA too because it isn’t sell in USA. I was just sad ans depressed becaus eof my job and a psychiatrist gave me Prozac and Lysanxia twenty years ago. I swallowed them for one year then decided to stop them in on day? I didn’t know it was so dangerous to do it. Two weeks later I became paranoiac and I was told I was schizophrenic. They gave me Haldol, Risperdal then Solian for 20 years and now I ust understand the drugs were my problems, has Dr Breggin says. I am so scare about the side effects of this products and don’t know what I can do to avoid hell. I haveno courage to go through tthe storm and I am looking for a helping Hand. Here, psychiatrists say that if you want to stop medication, it means that you are ill again and don’t want you to stop. Doctors are as dangerous as the medication ! I will start the whithdrawal soon but I am so scare I can have damage brain.
Ed says
I was on Zyprexa 2.5mg for about 6 weeks, then started cutting in half, then in 1/4, then down to about 1/8 for last 4 days. Haven’t taken any for 4 days. I sweat like crazy at night but mercifully get ion the first plug of about 5 hours sleep. I can’t drag myself from the bed or couch – and I just started a new job last week.
Hoping I can fake it through the day tomorrow and the rest of the week – really need the work.
My History: Had a manic episode, first in life, at age 56 about 9 months ago. Taking lithium 450 twice a day. Trying to keep it to JUST lithium. I want my life and mind back.
Star says
I am just wondering how are those ppl who mentioned they suffered withdrawal symptoms doing after all these years?
I am going through this now. Stopped a dopamine antagonist (antiemetic) cold turkey 9 months ago (I only had that Med for 3 months). Now I am still having waves of nausea, poor appetite, intolerance to stress…
May I know how long would these last? When do u guys really start feeling better (I mean at least able to get on life , though may be limited in some way or another?)
Anne says
I took Zoloft for 20yrs abilify6yrs xanex 10yrs and decided to taper over a 3yr period very slow and steady and then finish the last dose march17,2016 first month was easy just a little anxiety then the big issue I woke up but could not see the room was pitch black I called out to my husband and explained it to him he rushed me to the hospital all test cam back normal so then pins and needles seemed to stab me all over my body ,and crying spells random and the feeling of death stayed with me for months I would fall randomly when I was standing then one day what seemed like a seizure hit me and I fell my husband called the ambulance when they got there I felt ok so I refuse to go to the hospital and decided to make appointment with neurologist he did test everything normal after 8months and all the illinesses I decided to go back on meds don’t have the time to withdraw and live sick I realize I am disable from the drugs but I cant stay ill from withdrawing I have to work
mike says
I just quit geodon 80 mg cold turkey after being on it for 6 months, now its day 30 being of it, i did not have any withdrawal just a bit of head ache on left side, prior to geodon i was on Risperidon 2mg for 4 months and abilify 15 mg for 1 month.
I have some problem with sleeping, i feel like i am not sleeping at all but i do sleep very lightly, and wake up 3-4 times each night. I hope my sleep will came back so i can sleep non stop for 6-7 hours.
mike says
An update,
I had lost weight while on geodon for 6 months and not eating at all only slices of bread 2 on morning 2 to evening.
I was down to 158 pounds, I suspect that geodon also lowered my testosterone levels I was losing muscle too and becoming weaker. So when I quit geodon on 1 of august 2017, I had rebounded effect of testosterone and started putting on weight very fast I went from 158 pounds in early august 2017 up to 195 pounds on new years eve of 2017, of course eating pizza once a week didn’t help.
on 3 of January 2018 I started going to the gym and started working out rigorously and at the moment I am down to179 pounds but still to much for my feet to handle.
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mike says
An update 1 year and 1 month after quiting geodon cold turkey.
My weight lost went on and on, i was out walking and running for hours. My rekord is running for 3 hours 6 min, 43 kilometers.
1 of may 2018 i hit 130 pounds, then i quit my diet on 1300 kcal a day after being on it since januari 2018 and started eating more kcal a day, and now days i weigh 140 lbs but have a body like a body builder now instead of the fat one.
I work out in the gym 5-7 days a week, now eating 4000 kcal a day, have started to bycycle to work and back 44 min trip. aswell running in the woods, to prevent weight gain.
I feel very very well, Can’t belive that i was on Antipsychotics medication for almost a year and manged to quit by myself. Anyone on medication i hope starts to exercise to get well instead of using pills. Can’t belive that i took the pils?!!
My sleep patterns are now slowly returing after 13 months without any pills in my body.I dont use caffeine either, I use 2 glas of milk and a banana before bedtime.
I sleep some days up to 8 hours(usually 6 hours workdays) but not nonstop i have to go up to bathroom 2-3 times a night.
Sorry for bad spelling, Feel free to ask any questions.
Angela says
I was on mood stabalizers, antidepressants and antianxiety drugs. I decided to quit all simultaneously and hoard them with the intention of overdosing to finally end all the madness in my head. I’m about a week into not having any medications and im having trouble forming sentances, I have decreased appetite and I’m lethargic. When im awake my mind feels less surpressed but when Im asleep i have terrible vivid nightmares about death. I am also a little more twitchy and paranoid.
Kristin says
UPDATE:
So i am off Risperidone over a year now and im starting to taper off Geodon. This is the hardest thing I have ever done. I have lowered my 80 mg 2 times a day to 60mg 2 times a day and just that 20 mg is severe side effects. I have been to ER multiple times, and i feel sick every day for hours daily and nightly. I get nausea so bad and i cant keep anything down. I have found a perscription to zofran to combat the nausea. I have bidy temp issues and i get really hot then really cold. I feel like I have fever at times, and I have tacycardia and severe anxiety. I get muscle stiffness and I will not move postures for long amounts of time, like im holding my breath in suspense. I cant physically move though. My throat swells up and I cant swallow when it gets close to the time to take my meds. My doctor told me there was no side effects in discontinuing Geodon and wanted to taper me off in 1 month, When i got down to 40mg 2 times a day i got violently ill and my heart felt as if it would explode and the chest pain, I couldnt walk across the room without my heart pounding in my ears and chest, I was worried I was developing a heart condition, I felt chills and had vomiting, I developed severe agoraphobia And could not go into public places. I am having the worst time coming off this and im worried i am going to be stuck on this for life. I need some advice on how to get through this. I dont want to give into this drug and continue using it. Any help
Britton says
Hi Kristin. I a just beginning a taper off 40 mg of geodon. I am scared to death. Was hoping we could chat.
Veronica says
My son was given Risperidone 2mg after he became psychotic with marijuana and try to end his life, after a few months on this he did not want to eat or drink and stop talking he ended in the ICU they say it was Catatonia then he was given sypreza 40 at the mental hospital and discharge after 4 months to another mental hospital this one was a state hospital because he still was not taking he was discharge to the new hospital with 15 sypreza the Doctor said his blood count had gone down to 800 very low took him of the pills for a few days and became Catatonic again or neuroleptic malignan syndrome in the ER and hospital for 11 days it took 3 years to get him off the state hospital, discharge over medicated with lots of side effects now we are lowering the medication but the haloperidol injection from 300 to 100, 50 less every two months keeps giving him Akathisia he is restless the whole day paces and talks to himself the anger has gone down much with the medication going down the insomnia is being treated with Lorazepam 1 mg some times I had to give him 2 mg to sleep doctor does not want to go lower than 100 haloperidol decanoate inj a month because of a court rogers order that was force at the hospital but I will fight to get him off this garbage once and for all with the help of Larazepam (Ativan) 1m I could do it also haloperidol has not help at all or with the vomiting every day; please never give antipsychotics to your children it makes them much worse even for schizophrenia his motor skills are weak he makes lots of spills of drinks in the kitchen also very disorganize and needs help finding his CDS and books, can’t play his musical instruments well anymore could not finish high school he could not concentrate or sit still for 15 minutes Truly a sad story that will end well when he gets his life back out of this misery medications.
terry says
Hi so sorry to hear about your son, im 24 had a similar experiance perscribed antipshycotics for three years then began a taper of 25 % every 12 weeks withrawal im off totally three months im a lot more energetic talkative laughing a lot but do still have the odd rough patch that lasts a couple of hours to a couple of days im doing great now and hope to be totally free from withdrawals in 3-5 months .. wishing you all the best
Pat Bray says
I took 5 mg. olanzapine for 20 years. Withdrew cold turkey July of 2016 and have been having severe allergic symptoms among other symptoms ever since (almost 2 years): body itching all over, stinging and tearing eyes, insomnia, fatigue, asthma, cough, severe dental problems (root canals and fillings). An allergist tested me and found no allergies – concluded it was probably drug withdrawal symptoms. I have seen no reports of allergic withdrawal symptoms. Has anyone else had them?
Mike says
Yes I am stopping 7.5 zyprexa cold turkey and I itch all over my body. I took zyprexa for 7 years. It’s been two weeks since I’ve quit and All I do is itch all over.
Ahmad says
Hi
I am curious to know how are you doing?
I’ve been on zyprexa for 5 years currently 5mg thinking of stopping.
I’m currently doing fine, just battling weight gain and loads of sleep (9-15h a day)
Main reason why I want to quit is to reduce my sleeping hours.
Cyndi says
I am the mother of an adult child that is mentally handicapped and has paranoid schizophrenia. It has seemed impossible to find a medication that controlled the voices and aggression that she didn’t end up with some extreme reaction to.
Seroquel=mania and shoplifting
geodon=non stop vomitting and inability to stay still
zyprexa= throat closing and stops breathing
gabapentin=rash
saphris= suppressed her bone marrow and she had almost no white blood cells, had psychotic break after almost a year on it and tried to kill us, ended up in mental hospital.
riperdal= chest pain, fainting, blood pressure dropping suddenly
paxil= super depressed and interacted with the risperdal
She is now on haldol, lithium, hydroxazine, and prazosin. She was doing so much better and like usual then she wasn’t. I don’t know if it is the haldol, the other ones have been here a long time and don’t seem to have any issues. She has a difficult time explaining to me how she feels. I don’t know if some of this is still withdrawal from the risperdal which what everyone here is posting makes me think, except she seems to be getting worse. We switched to the shot because we discovered she has an aborbancy problem.
She complains of not being able to feel her body. She has pain everywhere all the time, numbness sometimes. She feels faint and sometimes can no longer stand up and falls to the ground. She is lethargic and seems very unhappy.
I don’t know how to help her. I want her to be able to have some joy in life, and take her to do fun things. I take her to doctor after doctor, hospital after hospital. No one is helping. The haldol does keep her from hurting us though, but I don’t want to make her sick, if this is what is making her sick. She was ripped of the risperdal about 3 or 4 months ago. Could she still be having withdrawal symptoms doing all of this and it has nothing to do with the haldol?
Sue says
Hello, I’m sorry to hear these stories. I was a professor with a good job, and then I was put on various meds due to a diagnosis of bipolar disorder 20 years ago. I had a seizure, which I think was due to the combination of so many meds. My neurologist told me I was on too many meds. For the last two years I was on Latuda. However, I clenched my jaw constantly, couldn’t sleep well, felt in a fog all day, and gained a lot of weight. The worst from this drug was severe anxiety. I couldn’t keep a job and I was agitated. I tapered and then quit my Latuda. My regular doctor said I should tell my psych doc, so I called and left a message, and no one called back concerned. I assume my doc may be mad that I quit. However, I did tell her constantly about the horrible side effects: the worst was feeling like I was crawling out if my skin for hours after taking it. I was never forewarned about the side effects or withdrawal side effects before taking it. I’m now over two months out, and most mornings I awake with severe anxiety, so much so, that I cannot leave my bed. I cannot eat and feel nauseated. Some days are wasted in bed, but I keep telling myself it will pass. Some days, I feel good like I used to before I began taking drugs. My moods are no different than they were when I was on the med. We’ll see how it goes. It is the hardest thing I’ve ever done, but reading these stories makes me realize we are all dealing with some serious drugs here, and I don’t feel my doctor was honest about the effects.
Ellen says
Over twenty years ago after switching psychiatrists, the new psych doctor didn’t like stelazine I was on, just didn’t like the drug. I had been on it for several years and begged him not to take me off it for I knew it would cause me trouble, but he did anyway. Put me on resperdol which made me so sick like having severe flu. He finally decided I was right and decided to put me back on the stelazine. Too late. The damage was already done and to this day in september 2019 still dealing with what the sudden withdrawal of the stelazine did to me. I could feel the chemistry in my brain changing, and change it did. Any memory that dealt with feeling/emotions was gone, also gone was the ability to feel emotion. I can’t even feel the change when Christmas comes now and every year since. I am very religious and can’t even feel the holy ghost, the savior’s love or any sense of Heavenly Father. Yet, still suffer because I also can’t get any doctor or clergy to believe me that a withdrawal from a drug could do this, I KNOW I’m right, some even say they’ve never heard of such a thing. Life is a living hell without this ability to “feel.” I am just existing, breathing in and out. This is just one part of my life story but it feels like the biggest part. I’ve heard constant voices since being a toddler, have complex PTSD due to severe sexual, physical, emotional and mental abuse, have misophonia, aspergers, dissociative disorder, schizzoid affective disorder, BD 1, borderline personality disorder, SLE lupus, I have a very highly sensitive system and I feel like I have to fight with people because no one believes anything I say that’s happened to me, because not everything is written in a medical book, and if it’s not written in a medical book, then it’s bogus, not true, all in my head, etc. These are the things so called professionals have said to me, and if I can muster up any courage I say: “You need to think outside the box with me.” Oh, here’s another one no one has heard of that happens to me: My stomach is so sensitive that all I have to do is smell something bad and my system reacts as if I’ve eaten it and I develop real food poisoning or high fevers, etc. Now, mostly I stay away from doctors and also keep my mouth shut. I just suffer alone and in silence, like I have since the day I was born. I have zero family, no close friends and wonder daily, “Why was I even born or I wish I had not been born at all.” I believe there are great doctors and places that could really help me but unfortunately I am also dirt poor with very bad public medical insurance and just cannot afford it. For at least the last 12 years about halfway through each month I run out of money and food, and I just hate being hungry but it’s just another thing that I don’t speak up about because as some people say: “Poor people like you are lazy and you brought this on yourself or Why don’t you do something about it?” Back to the deadness I can’t feel or think of how to fix it, so I just continue to be abused by life and people. If I could fix just one thing about my body it would to be able to fix the chemistry in my brain so I could feel some emotion if only just a little bit. Sorry about the rant but honestly no one knows who I am, it’s just all true every last word.
Dr. David Healy says
Grim. Its probably no consolation but there are no doctors anywhere – good or bad – who can help with the problem you describe. None of us know what is going on or what to do to put it right
D
Patricia says
Has anyone withdrawn from Invega trinza (the long acting injectable)? My doctor says it slowly excretes itself out of the body so I don’t need to taper or anything. I would just like to hear about the experience that anyone who has come off of it has had.
I have had a complete loss of emotions because of this drug. Has anyone else experienced this? How long after discontinuing did the emotions come back?
Gary Duncan says
I was prescribed olanzapine to help me sleep……I did not know it was an anti psychotic…… the Dr. That prescribed it passed away and my new Dr told me to get off it. I was on it for over a year.
I tapered for 6 weeks from 5mg a day to 2.5mg every 2 days…then stopped. After about a week the withdrawals started and for the past 5 weeks I’ve had hellish withdrawals… nausea, insomnia, lack of appetite and feeling bloody terrible. I take anti nausea meds which help sometimes but I don’t know how long I can cope with these withdrawal symptoms before I have to revert to olanzapine….. trying very very hard. Every now and then I get a couple of good days then the symptoms return.
Gay Sullivan says
I would love to hear a success story for coming off Zyprexa, I m trying to help my son, doctor doesn’t want to know .
Liver decease, type2 high blood pressure, from Zyprexa and Depicote
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Weaned him slowly off 10 ml , Zyprexa it’s been 4 weeks off the poison now, no sleep, voices in his head, no eye contact .
So scared for him .
Fabulous site pleased to have found you.
Thank you X
Meg says
I’m trying to come off abilify maintena 300ml and I dont know how to do it. I’ve completely lost my personality and memory and have become impulsive and can no longer have proper sleep. On top of this I feel really depressed and the doctors and nurses attribute this to depression to schizophrenia which they offered me an anti depressant but I said no since I dont want any more side affects. I’m beggining to feel like life is not worth living like this. Before I was an artist now I can barely do no art. I have lack of motivation too which they say is a symptom of schizophrenia but I think is just a symptom of this horrible med I’m on since I was never like this before. I’m scared to ask the doctor again because they just say that I’m repeating myself it makes me really frustrated because I do not want to get brain damage from these toxins.