Hello. I was hospitalized in 2010 after experiencing a psychotic break which landed me in the psychiatric hospital for 8 weeks. After the doctors trying so many medications, I was finally put on clozapine and left with lithium and a few other drugs. We slowly decreased some of the other meds and for about 8 years I was on clozapine and lithium. I never experienced another psychotic break and I never had any symptoms of schizophrenia after the hospital. Over the years it was a major question of what my diagnosis actually was and if schizophrenia was even the correct diagnosis, requiring the clozapine. For a long time I was on 175mg nightly of clozapine and 450mg lithium. My psychiatrist and myself decided to try reducing the clozapine slowly and see what would happen. From March 2018-November 2018 we gradually reduced the clozapine to nothing. I did not experience any psychotic symptoms.
However after finishing, I was unable to sleep. Severe insomnia has been extremely difficult and scary and my anxiety has increased. I am on a low dose of Trazodone to help me sleep but it’s stoll not great. I used to sleep 9-10 hours on clozapine and now I’m lucky if I get 6 with intermittent awakenings. Does anyone know how long this insomnia will last and if long term damage has been done from the years of clozapine? I feel off but I am not delusional, hallucinating or hearing anything. In fact I haven’t had any symptoms ever like that. To this day I still wonder what caused my psychosis but it was truly a one time, long horrible experience in my life that ended me up on this antipsychotic.
Maybe someone here has experienced that too but I’m not sure. Welcome to the forum.
Hey, welcome to the forum. It’s nice to meet you!
Now, do you remember if any insomnia preceded your psychotic break? If your answer is yes, you should call your pdoc asap, and I mean ASAP. Deterioration can happen quickly. If not, I think you should still tell your pdoc, but it’s likely not that urgent. Maybe your pdoc can give you something stronger for sleep? Insomnia is not fun, I know that firsthand. My hope for you is that you can get this sorted so that you can finally live a “normal” life. Good luck!
Yes. I did not sleep for about 3 days prior to my psychotic break…I started to feel completely out of my mind and had my roommate take me to the hospital where they transferred me to a psychiatric hospital. However with this insomnia, although I am feeling exhausted and anxious, I am not having the same racing thoughts and delusional thinking that happened when I first had my psychotic break.
I went off clozapine about 6 months ago. The symptoms should last around 2 months with residual symptoms another month after that (at least it did for me). Sounds like you are not finding it too hard like I did, when I came off the first nights I did not get any sleep for 4 days. I was prescribed diazepam which sorted my sleeping patterns out mostly. It is just a case of riding it out.
I am seeing my psychiatrist every few weeks about this to try and figure out what to do. My options were to go back on clozapine (which would then require bloodwork every week for 6 months when before it was only monthly), going on a different antipsychotic with less regulations like the bloodwork (zyprexa Or seroquel). We went with trying Trazodone. I have been able to sleep like I said about 6 hours but with several awakenings and never feeling fully rested. I don’t want to go back to clozapine for several reasons including the potency of the drug, the fact that I was able to lose 40 pounds after gaining while on it over the years, and the long term damage to my body if I truly don’t need it. However because it was so sedating for that long of a time my body heavily relied on it for that sedated sleep…
Ok sleep is very very important. I will die at a young age from insomnia. Wait, wait, I’ve has this over 20 years. But no, if you don’t sleep, it causes 99.9% of people serious problems. Do whatever your treatment team recommends. Get some sleep for free while ya are at it
I am able to get through the day but at almost some point of every day my mind goes into this weird brain fog. I can still hold a conversation, I realize it’s happening, and I try to ignore it the best I can to continue about my day and complete my jobs. But this is not something I ever had when we were gradually decreasing clozapine and so I am pretty sure it is related to not taking it and mixed in with my not so great sleeping pattern…
I am surprised that Trazodone 50mg doesn’t seem to keep me asleep for much longer than an hour or so.
I have decreased before and had no problem. Coming off it was terrible though. I had to stop my self from driving because I was just not in the right state of mind. Felt like I had been poisoned.
Do you suggest I go back to a low dose of it or just try to wait it out? I miss my sleep and I miss feeling normal but I truly am conflicted because if I was misdiagnosed and I do not truly need this strong medication, i don’t know if I should resort back to it…
I know it is hard but my advice is to wait it out.
Thank you. I appreciate you taking the time to respond.
I truly want to wait it out but when I don’t sleep well my mind is all over the place, which can trick me into thinking negatively.
I just left a message with my psychiatrist asking if I should increase the trazodone for now to help sedate me for sleep.
Ugh, I miss those days of sleeping 10 solid hours but that also came with waking up in a heavily sedated state which required time to even get my body out of bed and starting up the day.
Yeah you were on heavy brain pills for 8 years. Its going to take a while to get back to normal. There is severe side effects coming off these things. Sleep at all costs.
Have you tried Mirtazapine? It’s an antidepressant that can be very sedative & with good effects on sleep. I found it to be even more sleep-promoting than Quetiapine & about the same as Olanzapine. There is also Mianserin, which is almost the same as Mirtazapine.
For me Mirtazapine was much more sedating than Quetiapine, which was more sedating than Olanzapine, I’m not sure that Olanzapine even effects my sleep all that much.
What I found with Mirtazapine is that it hits faster than both Quetiapine & Olanzapine, but the tolerance builds faster: yet Mirtazapine would still put me to sleep every night without problem. Quetiapine & Olanzapine won’t really after a while & they take much more work to get a good prime on the sleep.
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