a couple of us here have treatment resistant voices and have been offered clozapine. r any of u on it and how bad were the side effects at what dose? i am worried that i’ll get fatter and sleep 14 hours a day. whats been ur experience
Just wanted to chime in here and say I went to a voice hearing group just before Christmas and met a man who had heard voices for 30 years. He tried drugs and they didn’t work, then finally tried Clozapine and within 2 or 3 weeks his voices were gone.
.;/wow! that gives me hope. within two or three weeks would b a low dose too so not as many side effects. still a bit worried though. i’ll c how u fare and then i’ll think some more. lol…sorry to make u my guinea pig 
Yeah, there is hope. I heard a statistic that for treatment resistment folks, roughly 67% (or two-thirds) respond to Clozapine. So there’s a 2 in 3 chance of success. It’s kind of like playing the roulette wheel at the casino. I hope I’m in luck.
Thanks for the info on lower doses being more effective. I can’t be sure my psychiatrist would know this.
I personally don’t care about the sleep effects, but weight is a worry. I do exercise a lot, and I can control my calories, so I reckon weight gain shouldn’t be too bad.
So yeah, I will let you know. I have seen you in the past this year on the boards, and am pretty surprised that you haven’t tried clozapine yet. But maybe on your own timing, etc…
i really hope it works for u. unfortunately i have to worry about the sleep effects as i have children to take care of and pets to feed and exercise. my husband died last december so i am all they have left. so i cant just go to bed. that was one of the main reasons i turned it down, because of the kids. if things get bad i’ll c how long it lasts and if it lasts longer than 3 months i’ll try it but at a low dose. xxx
I’ve been on Clozapine for probably around 2 years?
I forget what dose I was on at first, probably like 100-200. The drooling was pretty bad before and they gave me an inhaler like spray to stop it. Sometimes I would wake up in the middle of the night with a mouth full of saliva! Was kinda annoying but stuck it out and I don’t even need the spray anymore because the drooling stopped.
I used to get really bad akathisia! Like unbearable. The trick to avoiding this is to eat a good, hearty dinner or else you’ll feel restless and anxious for no reason! I’ve only gained 4 pounds since I started taking Clozapine, but because of this, I’m worried I might gain more.
As well, if you try to up your dose too much, in my experience it increases the chance for akathisia. Cloneazepam or Lorazepam can help this but not entirely. My GP has told me that it’s very rare for Clozapine to cause akathisia so you might not even encounter that.
At first, I was really turned off of clozapine because I hated the idea of all those blood tests, but once you get used to it, it’s not such a big deal. Plus the longer you’ve been on it, the fewer tests you have to get.
On the plus side, it has really helped me get my sleeping schedule back on track (from doing all nighters for university for years), and it takes no longer than 15 minutes to actually fall asleep.
When I wake up I hear no voices and have no OCD intrusive thoughts, which is the good thing. I think it’s because the meds are still working in my system from a nighttime dose of 325mg. The voices start up for me around 2:30pm and go on into the night until I sleep.
Recently I asked my doctor about splitting my dose up during the day to possibly help my daytime symptoms? He recommended I start at 100mg every morning but this was way too much than my body was ready for. I got so fatigued and weighed down in the daytime, so I took it upon myself to take 50mg for a week instead.
Right now I’ve worked my way up to taking 75mg in the daytime and luckily I’m not zombified by that anymore. Working my way up to the 100mg.
Anyway, to me, the important parts for taking clozapine have been increasing in very small increments (25mg), having a big enough dinner (or enough to eat throughout the day) and patience.
Apparently though, clozapine could be a pretty difficult med to taper off I’ve heard, because of how it helps with sleep.
Anyway, sorry for the long and late post! Hopefully someone will find this useful if not you.
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HI. Clozapine isn’t that bad. I started clozapine even though I wasn’t treatment resistant. I wanted to get rid of negative symptoms and clozapine helped with that(not entirely,but it helped). I started with low dosage and gradually , the dosage was increased . I have been on it for 4 years and I haven’t gained weight a lot and I sleep 9 hours a day . Best of luck.