But if you don’t try you’ll never know
They say clozapine is a last option medicine that it works when others fail
True but to try for how long for? I know this sounds so ignorant, but to wake up having wet the bed, to wake up feeling sedated, being constantly hungry, too tired to go to the gym. The possibility of feeling zombified and weight gain… I believe is far more unhealthy for me, than my current mental state
Well everybody is different. I take 300mg of clozapine. The risk of effecting your bone marrow is not that high. And they check your blood so if something does happen you can stop it. Also I am not sedated right now. If I remember right the sedation went away for me.
@Jake this is true but I am also a student. All the other medications make me mentally impaired… and they are not as powerful as clozapine… I just fear that I would have to pause life if I start it, until I become able to manage it
So you have tried all other apps
There is no quick fix you might have to take a month or two off
2 months? That is just simply not possible l…
What is your worst fear about taking clozapine? Effecting you school work?
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One idea is that you could take a couple of antipsychotics medicines then you won’t have to take a high dose of clozapine. I take abilify and clozapine together.
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My experience on Clozapine was overall not very positive. During the initial stages of treatment I got better but then a few months in a got worse but unable to communicate why. It is very sedating but also can make you just dull and zoned out. I was living what felt like beneath the surface. I gained over 100lbs and you can’t always diet or exercise and have the weight gain under control because it can impact your energy levels and metabolism very extremely. My libido was affected, my ability to think abstractly and create art in various forms was largely stripped away. I slept deeply an average of 15 hours a day and I think my house could have been on fire and I would have been able to sleep through it. I had bed wetting for the first few years on and off. During the entire course of treatment I had extreme night drooling. I covered my pillow with a crib liner and a towel which I changed every day. I was still experiencing hallucinations and delusions but since I was calmer than I’d been I didn’t know how bad they were at the time and I was glad to not be so agitated. I was zoned out so bad.
Clozapine is very good to some people but across the board most people will have extreme side effects. For some people they are tolerable and/or worth it as the price to pay from the drug’s benefit. Regardless, Clozapine is a big commitment. I know people who were promised it would be great and were very let down. I stopped it after ten years and adjusting to reality after that was a multi year process. It also can affect your digestion. I had ten years of chronic constipation. Don’t let anyone tell you it’s the gold standard and that you can try it and see if it helps. It should be treated as a last resort and even if you tolerate it well you can’t get around the regular blood tests and the sedation.
I know many stories of people who swear by it and I think it has the potential to be very helpful but also the potential to be a nightmare and therefore should be seen as a commitment. I wasn’t able to eat properly (metabolism effects were dramatic and a major part of this), exercise, or pursue creative pursuits like art or writing poetry while on it. Things that were amazing therapies before Clozapine were impossible on it. Case workers love to talk about it like it’s a wonder drug but they are often ill informed and don’t understand how intense the effects are while you just “give it a try.” I know of many people who’ve had docs/case managers etc ignorantly push it as a wonder drug before working with you to find an alternative drug or combo. Ask questions and go over your options and if you have other options I would encourage you to explore other drugs first.
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@Jake my worst fear is all the side effects and losing myself again
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Everything you described was exactly what I was afraid of. Thank you so much for such a detailed account. I think I am now more influenced to reject the medication now
@Jake and this does not make you mentally impaired?
It’s intense stuff and I had no warnings so I’m trying to pass on what knowledge I can. I have a giant memory gap from the whole ten years I took it. I lost my 20’s to that stuff. And the disease of course. I have almost no memories of the outside world. I remember a lot of the horrific stuff inside me. I would definitely explore other avenues first. Just the blood work and dispensing restrictions really tie you down. When I started it in 2001 it was the only thing on the market left to try other than typicals which I couldn’t tolerate. There are more options now but you will have to fight for them. If providers knew what these drugs were really like they wouldn’t rx them so haphazardly. Best of luck!
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@nodrugs I have tried 4 other antipsychotics, this was my last attempt. Are you currently on any other medication? I think I will just continue as I am… it is not ideal, the thoughts, delusions and beliefs shape my life, but in total honesty, I think I can manage them. I will just adapt. While I cannot do everything I want, I find that I am at peace now. I think that is the most important thing.
I have changed, I cannot be who I once was or live the life I once lived… I just need to teach myself how to accept that.
Taking into consideration, everything I have read both good and bad, I am convinced that I will not pursue the treatment with Clozapine. I will not take anymore medication “ No More Drugs”
Zombiefied seems not the right word, I just lost motivation to something even the simplest thing. When I am like that I take amytriptyline before sleep along with clozapine. The next morning I got better, I feels can move on to do something.
What antipsychotic that you already try? You mentioned 4 drug
@Chrisfrans I have tried, Olanzapine, Risperidone, Aripirizole and Quitapine. Clozapine would have been the 5th
You can stop it? Wow, how? Cold turkey? How many mg did you take?
You could try amisulpiride or sulpiride
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