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Has anyone successfully stopped Clozapine without going onto a different medication?

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Joethejo

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Has anyone successfully stopped Clozapine without going onto a different medication?

About a month and a half ago I successfully reduced and stopped my Clozapine without replacing it with another antipsychotic medication but I must say that the withdrawal effects: nightmares, insomnia and physical pain above one ear were extreme. The nightmares have now gone but the insmonia and pain remain although not in the extreme state. I have talked to my old psychicatric team and they, although helpful with this matter are not due to the fact that I'm the only person they know who has managed to come off Clozapine in this fashion successfully.

A bit of background; I was on Clozapine for about 17 years, I think the max dose I was on was 575mg but I'm not sure due to the level of that dose and the other sedating antipsychotic I was on at the time. It took me about 2 years to reduce and stop the Clozapine; this was done after it was realised that I did not infact suffer from schizophrenia but in fact menstral psychosis which is now in permanent remission.
So I was wondering has anyone else done what I have done and whether we could compare notes?

Futher to this I will also be stopping Aripriprazole and Citalopram in the same fashion but not at the same time. Has anyone got any infomation on what to expect when stopping these meds?
 
coldwater00

coldwater00

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About a month and a half ago I successfully reduced and stopped my Clozapine without replacing it with another antipsychotic medication but I must say that the withdrawal effects: nightmares, insomnia and physical pain above one ear were extreme. The nightmares have now gone but the insmonia and pain remain although not in the extreme state. I have talked to my old psychicatric team and they, although helpful with this matter are not due to the fact that I'm the only person they know who has managed to come off Clozapine in this fashion successfully.

A bit of background; I was on Clozapine for about 17 years, I think the max dose I was on was 575mg but I'm not sure due to the level of that dose and the other sedating antipsychotic I was on at the time. It took me about 2 years to reduce and stop the Clozapine; this was done after it was realised that I did not infact suffer from schizophrenia but in fact menstral psychosis which is now in permanent remission.
So I was wondering has anyone else done what I have done and whether we could compare notes?

Futher to this I will also be stopping Aripriprazole and Citalopram in the same fashion but not at the same time. Has anyone got any infomation on what to expect when stopping these meds?
Well done on stopping it after all that time.

I was on 350mg for about 8 months and stopped it cold turkey - I got the insomnia and nightmares but I wouldn't say it was anywhere near as hard as coming off other drugs. I was put onto Risperidone afterwards, which I refused to take for a while and then was later forced. I am now not taking any medication.

Be aware that because you were on clozapine for so long, the Aripiprazole you are taking may be masking some of the withdrawal effects you might otherwise experience after such a length of time. I would be very careful about your reduction of the Aripiprazole... In fact, I'd be wary about stopping that one altogether after such a long time on neuroleptics and 17 years on a high dose, high potency antipsychotic like clozapine. Your brain will have adjusted to being medicated and you may well become severely ill if you stop the Aripiprazole too quickly (if at all).
 
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servantpompey

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I am stable and doing reasonably well on my medication.

Have been on several anti psychotics over the years in combination with anti anxiety tablets.

IMO, if people are stable on their medications, I simply cannot understand why people think that it is a great achievement to come off them. As if this is now their major goal in life.

I take a high dose now, queitapine 800mg and venlafaxine 225mg, but I am able to get about and live a reasonable life.

I am aware a few days without them and I would become massively unstable.

I religiously take the doses I am given, because I am aware consultants will have a much better knowledge of what controls my symptoms than I could at time.

In effect, what I am saying is I am aware I have a brain condition that absolutely requires medication for the best life for me possible.

I agree with the advice on here that if you come off meds without substantial supervised professional support, you can in some instances be putting your life in danger.

Me personally I would strongly advise against.

If you think clozapine is no good for you, ask to be switched to another anti psychotic. That is your right to do that.

I switched from risperidone to quetiapine and was much better for myself personally. From knowing others, it can be very random, which is the ideal for us dependent on our own biology etc.

The most important thing in my ideas is remaining stable and if improvements can be made, maybe enquire about change in anti psychotic but definitely not elimination.

You have been on clozapine for 17 years, I feel it could be incredibly damaging for yourself to come off yourself. Believe me, speaking from experience. I would hate for you to become massively unwell, because of this, which can be a very high probability, if you take the actions you are considering.

But most definitely hope all can be sorted in the correct and safest way for yourself.:hug1:
 
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Joethejo

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Thanks guys but I would just like to add that I have done this with the full and absolute blessing of my psychiatrist as I said, and I know everyone says this, but I was misdiagnosised my problems were hormonal. I know I'm in for a very rough ride coming off the remaining antipsychotic but I really don't see the point of taking something that is potentially harmful for a condition that I was misdiagnosised with. But I would ask how long did the insomnia last @coldwater00?
 
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christiaan

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I stopped taking clozapine 3 months after being on it for 6 years.Its not gonna be fun this for me is no fun be prepared.It is getting better for me slowly i have noticed several small changes in the way my brain operates my body is diffrint too.

Good luck getting of clozapine sucks.3 months in a feel great somedays just remember this is a long term process you need to be patient.I myself have run out of patience.10 months ago I decided to quit clozapine been of it for 3 months so far to go.It sucks
 
Gajolene

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I would suggest having a loved one, or close friend you can confide in and trust to watch over you in the event things start happening that you may not realize yourself are happening and in the event that you become dangerously symptomatic during the coming off process. CMHT can't be around enough to really know what your going through with weekly visits unless your in a hospital environment during this time.
Would really appreciate it if you keep us upated on your withdrawl process, not something we see here very often.
 
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christiaan

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I would suggest having a loved one, or close friend you can confide in and trust to watch over you in the event things start happening that you may not realize yourself are happening and in the event that you become dangerously symptomatic during the coming off process. CMHT can't be around enough to really know what your going through with weekly visits unless your in a hospital environment during this time.
Would really appreciate it if you keep us upated on your withdrawl process, not something we see here very often.
Yes please do and know you are not alone I am going through the exact same thing expect I am 3 months of clozapine and have no support nobody knows I am doing this.
 
Gajolene

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Christiaan is there no one you can trust to help you through this with your decision to come off and what is the worst that could happen if you do?. I worry...only because I've seen it many times with my sons and always led to unstable relapse and involuntary admissions in their cases of scitzoaffective and delusional/disorganized scitzophrenia.
 
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christiaan

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i dont know I was hospitilzed for 2 days then put on drugs.No everybody would just put pressure on me to take clozapine because thats what the doctor said I should do.They will make things worse.

Worse case sceneria is I do relapse if I was sick to begin with but even if that happens I decided its still better then being on clozapine a lot better.I seen what the drug did to my brain after 6 years and they expect me to take it for the rest of my life.They will need a court order

I'll be fine just need time for my brain to adjust doing good really just had 2 nights of really bad sleep I am hoping to catch 5 hours desent sleep tonight and feel a lot better tomorrow.Sleep patterns are highly irregular this was not the first change in my sleep patterns I quess my brain is hard at work
 
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Joethejo

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Well I got a good nights sleep last night, not what I used to call good but good by current standards. I think I should explain my great motivation for finally stopping the Clozapine: I start university on Monday and really do not want to be under a CMHT here and as you are probably aware you need to be under one if you are prescribed this medication. I was fully discharged by my old psychiatrist of 14 years after it transpired that my problems were hormonal not schizophrenia atr all even though I had been 100% complient with all the medication I had been placed on, I don't think I ever missed a dose.
As I'm in a new area I have registered with a new GP, who has, unfortunately freaked out at the fact that I am on the remaining bits of psychiatric medication and on my own up here, so has reffered me to the local CMHT. This was exactly what I didn't want and neither myself or any of the old CMHT team feels/felt I needed; bear in mind that this CMHT knows me better than anyone I was with them for 21 years apart from when I was locked away in a different part of the country.
So to conclude mentally I feel good but the physical symptoms are tiresome, hopefully the uni course will tire me out enough for me to get proper rest each night as the strange thing is I'm not sleeping during the day and not really getting that tired. I suppose it could be my brain waking up from all those years of being sedated.
I will however keep in touch with you guys here and blet you know how things are going. :)
 
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christiaan

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Well I got a good nights sleep last night, not what I used to call good but good by current standards. I think I should explain my great motivation for finally stopping the Clozapine: I start university on Monday and really do not want to be under a CMHT here and as you are probably aware you need to be under one if you are prescribed this medication. I was fully discharged by my old psychiatrist of 14 years after it transpired that my problems were hormonal not schizophrenia atr all even though I had been 100% complient with all the medication I had been placed on, I don't think I ever missed a dose.
As I'm in a new area I have registered with a new GP, who has, unfortunately freaked out at the fact that I am on the remaining bits of psychiatric medication and on my own up here, so has reffered me to the local CMHT. This was exactly what I didn't want and neither myself or any of the old CMHT team feels/felt I needed; bear in mind that this CMHT knows me better than anyone I was with them for 21 years apart from when I was locked away in a different part of the country.
So to conclude mentally I feel good but the physical symptoms are tiresome, hopefully the uni course will tire me out enough for me to get proper rest each night as the strange thing is I'm not sleeping during the day and not really getting that tired. I suppose it could be my brain waking up from all those years of being sedated.
I will however keep in touch with you guys here and blet you know how things are going. :)
so did I fell alseep for 5 hours first but lucily feel sort of alseep again.However after 2 days of barely sleeping I am still exhausted hopefully I will catch at least 5 hours tonight should be feeling pretty good considering my condition tomorrow.Night time for soem reason thats when ia m at my worse nothing to do but wait for the dull hours to pass so I can finally go to sleep
 
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Joethejo

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I got the best night sleep I have had in ages last night actually stayed in bed till 8am .:) but the pain this afternoon is bad and I'm feeling a little flat but I reckon the mood is to be expected, I have nothing to do and no one to talk to till Sunday. I think I need to go and find someone somewhere to talk to else I'm going to start to feel isolated which is not good for anyones mental health.
 
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Joethejo

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Morning guys and although I am aware of the time 6.30am I think the insmonia might be passing. I think this is the 3rd prehaps 4th night where I managed to stay in bed all night and get back to sleep quickly when I woke up. This is I feel an improvement prehaps soon I might be able to sleep through the night again without waking; I can only hope.
Unfortunately the pain is not as good. I am very adverse to taking any chemicals, although I do have to take some: aripriprazole, citalopram and omeprazole, I think the clozapine did my stomach in years ago soon after I first started it. However with this pain I'm having to take painkillers, paracetamol, and for me to take pain killers the pain is bad.
Right thats the physical side of things onto the mental/emotional stuff. Last night I helped out with a local charity for the first time and will hopefully be helping them out on a regular basis, it was a very humbling and heartwarming experience. I really hope that I have time during the uni timetable to make a regular commitment.
Also people should be moving in today, I woujld hope else it looks like I might have the student house to myself for the year which would be both good and bad and the course starts tomorrow. So looking forward to it.
Anyway time to sign off and grab a shower. Thanks for all your support and the hugs. I hope Christiaan is ok. Catch you all soon.
 
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