hi so i have been diagnosed with schizoaffective bipolar type since around april 2024 during freshman yr of college. put on many different antipsychotics (aripiprazole → olanzapine → risperidone → paliperidone → haloperidol → lurasidone → quetiapine → back to olanzapine and more) with minimal/no improvement on all + some bad side effects generally. biggest psychotic issues are persistent visual hallucinations with some occasional auditory ones, social paranoia, grandiosity, erotomanic thinking, idea of reference, negative symptoms. some of the meds would dull some things but the hallucinations stay particularly strong. trigger warning suicide suicidal ideation/attempts are an issue, can sometime be very violent gruesome plans/ attempts
right now on escitalopram 10 mg, lithium 1800 mg, ziprasidone 60 mg. at least ziprasidone made me realize i was actually not doing well at all this semester despite absolutely conviced i was 100% fine while having F in every class and withdrew from semester on the deadline. anyways my current dr is saying i can do ziprasidone now but maybe switch to cobenfy and if that doesnt work clozapine during next visit later this month. i can afford cobenfy (free with coupon somehow). ziprasidone hasn’t done very much for the symptoms so far been on for around a month now.
what they said about clozapine made me scared of some of the side effects, monitoring, etc. i don’t feel sick enough to need it and to maybe just stop all the meds and see what happens and confirm illness. but idk what to do, does anyone have advice on if clozapine is worth it? to complicate it my dr thinks maybe i have personality traits that are intensifying things like the paranoia and impulsive/erratic behavior, so i feel very lost. i want insight from people who actually live with this. thank you sorry for long read
Clozapine is different for different people. Some people are like horses with it and can take the load and they don’t have any problems with the fuc king side effects.
Other people are sensitive to it and gain a lot of weight.
There’s also drooling at night when you’re asleep.
I personally had retroactive ejaculation on it, which means that I could no longer orgasm.
Which ultimately was unacceptable for me so I stopped taking the drug
Welcome @fractal . I have never been on Clozapine so I will leave it to those that have. I know its kind of known as the last thing to try when nothing else works, though.
I also should note that , while our members can share experiences with you, we are not doctors and cant give you medical advice. You should weigh your doctors advice seriously in your decision.
Also, as Freelunch mentioned, people are different and they react differently to AP’s.
For example, I’m on Abilify Maintaina, which pretty much eliminates positive symptoms(the pills worked equally well) for me but for some people , like you for example, it doesnt do much.
I know that clozapine can cause some unpleasant side effects but untreated psychosis just makes life so scary and unliveable that this really makes clozapine worth a shot. I was on 600 mg clozapine 30 years ago and it really took away any trace of psychosis. I’ll recommend it for you to end your suffering. Clozapine is really a valuable meds for hard thirst psychosis.
Most side effects of clozapine mostly happens when the dose is more than 300 mg. And most psychosis can be treated below 300 mg so I don’t really think that you will experience much side effects on clozapine.. But should you experience constalp0ation use Mirilax. Should you experience hyper salvia then there are drops for that. If you eat healthy and exercise you’ll not experience weight gain. Lastly I wish for you that clozapine will end your suffering dear friend.
Hi @fractal. I’m glad you are here; it sounds like you found the right place.
I also have schizoaffective disorder, bipolar type, but I’ve had it for maybe 16 years now. I know how easy it is to give up and just stop your meds, but this is a common issue with schizophrenics. The problem is that you’ll eventually relapse and go into psychosis. I think most, if not all, of us have been there. Believe it or not, they will likely eventually find a medication or combination of medications that works for you.
I have taken both Cobenfy and clozapine. With clozapine, I didn’t notice anything, but I didn’t get far into the treatment because my WBC dropped, and I had to be pulled off of it. I did struggle getting out of the house to do all the blood work they wanted, but I admittedly struggle to get out of the house at all. As for Cobenfy, it made me sick to my stomach for weeks. I called my practitioner and told her that I just couldn’t deal with the side affects. Since it had been happening for a while, she agreed it would be best to get off of it. However, I think Cobenfy could have really helped me.
ETA: For what it’s worth, my current med combo is quetiapine, depakote, and diazepam.
It works wonders for me aside from the massive weight gain and hypersilivation. There is ECT to consider after Clozapine as the last line of defence as I have heard from one of my old psychiatrists.
I took clozapine in 2004 but side effects made me stop after a few months. I was drooling heavily, wet my bed once even (thank goodness I was in hospital that time) sleeping 16 hours a day and feeling sedated the rest of my waking hours. I forgot the dosage I was on, it was so long ago when my schizoaffective just began.
I’m currently on 350mg clozapine and it works really well for psychosis in me, but it caused me to gain weight and, at one point, have qtc prolongation. It isn’t helping with my current depression and I’m having ECT treatments to help with that for the next 3 weeks. I’ve been on Cobenfy but the GI side effects were terrible and I had to come off it. But everybody’s experience with sza is different and individual, so what works well for one may not work for another. The illness sucks but you CAN live a fulfilling and positive life…it may not be the life you set out to live, but things can still be good. As you can see on this site, many people live very full lives while battling the illness…and it’s good that you are being proactive with your treatment team. Good luck with your treatment!
Clozaril is the only meds that helps me and that I take at night to go to sleep . Sorry you have bad side effects. I had bad side effects from Olanzapine.
You could try to take high dose niacinamide(vitamin B3) as a adjunctive add-on to your AP regiment.
Abraham Hoffer was a doctor that did orthomolecular medicine back in the 1950’s and claimed psychiatric patients responded well to it, although later research has debunked his theory apparently.
But it’s very low risk to try compared to clozapine. It can impair the liver at very high dosages, and you might get non malignant flushing of the skin depending on what type of niacinamide you use. Maybe google it and read up on it.
Anyways it might be worth a try before doing other things considering comparative risk.
It’s not a stand alone treatment in any way, I only recommend it as a possible complement therapy that might work well together with antipsychotics.
I have used it myself in the past together with olanzapine and it did seem to quiet down the mind substantially. But I have never had visual hallucinations, so I don’t know if it would help against that.
. Sorry you have bad side effects. I had bad side effects from Olanzapine.