Discontinued Antipsychotics - Struggling through withdrawal and re-entering society

Medications
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Hi. I was a not very active member of this forum around 1999-2001, and I just joined again.

I am having a rough time, but for a very different reason than I ever have. I have childhood-onset schizoaffective disorder. I’ve gone through horrible, severe psychosis as well as depression. As a kid I was started on medication at age 11. I didn’t start antipsychotics until age 15. I turned 31 this year. I have had miserable side effects from all 10 I have taken. At age 18 Haldol gave me NMS. I had amnesia for around 8 days, when I came out of it I had been put on Clozaril. It helped the first few weeks but then I gradually deteriorated. I am very prone to dystonia which has controlled a large portion of my day to day life since I was 17. I was more symptomatic on Clozaril than anything, couldn’t work, couldn’t go to school, couldn’t function period. I had a great doctor though, until he retired in 2010. Since then I have been shifted between 6 doctors.

I successfully discontinued Clozaril (after 10 years) in early 2012 and have since been on Latuda. I am trying to keep this short so I won’t get into specifics - but the dystonia caused by Latuda got to be so controlling that I couldn’t function well. I have not had any symptoms since I got off Clozaril. I have discontinued Latuda in the last three weeks. I tapered down for 5 months but the final jump off was a bit faster than I would have liked - it just couldn’t work any other way.

I have had a miserable withdrawal. I can’t find anyone who can relate. I don’t know what’s in store for me. I am graduating from school in 3 weeks. Getting off Clozari gave me my life back. I can be creative again, I went back to school. I am having trouble finding a doctor who can manage the discontinuation syndrome. The latest one is on maternity leave. No one seems to want to. They just want me to take pills.

I am finally capable of working, I have a degree. I don’t have friends where I live, I have no one to talk to. I’ve been alone in this fight for most of the time. I am reaching out because I can’t do this alone. I am not interested in another antipsychotic. I’m finding a lot of people not being sensitive to the reason my family still supports me financially. I’m actively looking to change that, but it’s a process. I don’t know if anyone can relate.

4 Likes
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Other then meds have you tried therapy? Are also some 12 steps programs like Grow which is an adaptation of AA’s program to mental illness which is also free. Depends where you are though as Grow only started to spread over seas but one of the more successful programs from Australia.

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Hi. Thanks for replying. I’m in therapy with a really good therapist I’ve worked with for a long time. I’m really interested in some programs/groups, just haven’t found a lot in my area.

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Definitely ask your tdoc (therapist) if you haven’t yet. They tend to know about local programs and such. That may suit you.

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are you psychotic? i read somewhere that only 1/3 of schizophrenics take meds there whole life. i had a lot of the same issues you had with the meds it was such a struggle knowing you couldnt think use your own brain. they need to do more research on the brain damage that this medicines cause so that next generation medicines will be an improvement instead of just disregarding what we say about finding it hard to live with these side effects.

i am a month off risperdal and got dystonia in my nasal passages, forehead and ears. im lucky i dont have to live in embarassment but it still a lot to not be able to control your body its like water torture and taps away at your conciousness.

i hope you can find joy in life, it sucks that our system is so dog eat dog and those with issues need to suffer, for instwnce with disability.

does the dystonia get better off the medicines? im holding on to shreds of hope mine can still go away because these medicines can linger in the system for months. i got off medicines just fine so far with no psychosis but mine was adderall induced albeit at a low mg.

how long did your withdrawal past? im hoping my issues are still withdrawal or hormones that need to be reset, maybe even brain size that needs to reset to its previous state.

schizophrenics are lucky in some ways like we dont have to have 50,000 dollar facial reconstruction surgeries or have expensive devices implant in us, we just need to takea pill.

unfortunate thing about schizophrenia is medical industry just discounts all side effects as rare, doctors say it could go away in time which in my case definitely didnt and the drunken state we are in with some of these medicines should not be considered normal, they need to keep striving this is flintstones era cures for psychosis in my opinion.

granted i did benefit from the antipsychotic but i remember the state of mind i was in on those drugs was completely disabling. in fsct it replaced my paranoia with hallucinations for the first three months.

did your dystonia subside? i hear some say it does thats what im praying for keeping a positive thought out for. i cant see myself living to fifty with dystonia as it robs me of all joy in life even worse than my depression i had before psychosis did. the movements pierce the top of my conciousness and when i go to relax in bed im still stressed becaue it just keeps pushing and going and pushing on my face muscles it pushes itself to the forefront of my conciousness.

i hope to god you get better my friend.

medicines need lean six sigma when they do research. they say 5% of people in certain studies getting a side effect makes it rare. if they were to use the same math in the airline industry and 5% of all planes crashes to the ground noone would ride in a plane. i can imagine an airline industry doing what drug companies do, downplaying serious side effects like brain tumors from risperdal. tarditive dyskinesia, etc. its misrepresented, and my doctors didnt even tshare with me some of these risks! i didnt know i had tarditive dyskinesia til my second time reporting it to my doctor.

a 1-5% chance of winning the lottery is high. im so surprised psychiatrists prescribe this medicine for depression or aspergers syndrome. those psychiatrists who do should be in jail

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Glad you returned! You probably already know this is a very supportive site.
it sounds like you have had a rough time-but are doing much better. I hope in your job or school,you will be able to find some good people. Don`t feel bad about the family support. I have to semi-support my son…He is unable to work.
Please come back often. There are good people here too!