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Looking for advice on AP reduction

Looking for advice on AP reduction

Postby GettingOffAP » Aug 31, 2016 4:17 am

Hi Everyone!

I'm in the process of going off 40mg of Zeldox (I think it is called Geodon in the US). I'm on that medication because I was psychotic many years ago. Through a lot of internet searching and luck, I've been able to find a controversial psychiatrist in my country that is willing to help me come off this disabling thing called medication. I've now spent two months on reducing the dose down to 20mg, and so far I've had very few problems. There's just been some dizziness, nausea, brain fog and some strange neurological feelings I can't explain. My psychiatrist tells me his experience is that it is not so difficult and dangerous to get off the first half of the dose, but getting off the second half is. He could be right, but the reason I'm really worried is that about three years ago, I stopped taking 10mg of Abilify pretty adruptly. After I did that, I was fine for about five months, and then very suddenly I got a whole host of pretty serious problems. One day I just couldn't eat or sleep, and I became floridly psychotic over night. I'm really scared this will happen again now. My psychiatrist think I'll be fine, and I can talk about the psychotic experiences I've had with him without being judged, which helps, but I'm still scared I'm not going off Geodon slow enough. Does anyone have any advice on how to taper off antipsychotics and avoid becoming psychotic?
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Re: Looking for advice on AP reduction

Postby CryAngerNow » Aug 31, 2016 11:20 am

There's a booklet called something like "Coming off Medications" that is offered on the homepage of Icarus or somewhere I think. There's also videos by Will Hall called "Coming off Medications" that could be helpful.

My feeling is "avoiding being psychotic" after all those years on the drug... Come off the drug extremely slowly, don't be afraid to keep going back. .5 mg per lowering and wait until you're able to cope with what comes, then lowering again. Thing is, if you do not have a replacement way of dealing with whatever comes, someone or your fear of the psychotic state is going to bring fear, so accepting and allowing feelings that come and having safe people to be with through them was vital to me. People who aren't going to keep me in the "I'm psychotic" because I'm feeling this way at this moment. That's not support, and having believed this in myself didn't help of course.

Diet, listening to your body, exercise, meditation, nature, support in your decision... All important so I've heard. I've practiced a few of them, not consistently. But been med free for 5 years now. I just had a belief that I wasn't going to allow psychiatry or family SAY what I am and what I HAVE to do. I don't know what the medications for 20 years did to my brain chemistry. I still wonder and sometimes get angry, maybe even psychotic (humor).

I was altered for some time, but it passed, sometimes it comes again, but it passes, kind of like an acid flashback.

Oh, and SLEEP is VERY IMPORTANT. 6-8 hours regularly. Definitely a huge cause of psychotic episodes.

But, then again, no surprise, anyone would experience the same.
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Re: Looking for advice on AP reduction

Postby GettingOffAP » Sep 01, 2016 12:01 am

Hi AngerCryNow,

Thank you so much for a very helpful reply. The thing that worries me is that it is so seemingly easy for me to reduce the dose now, but I`m scared of some sort of rapid onset super sensitivity psychoses sometime into the future. But yes sure, spending months or maybe even years to ween myself off, is definitely a safer approach than cold turkey.

You bring up such a good point in not being afraid of psychosis. Well, psychosis in itself isn`t that scary, I`ve been through it before sort of, but it brings with it so many negative consequences. It frightens the people around me, and I`m scared I´ll get caught up in the mental health system again. There`s really harsh punishments for being psychotic there. Anyway, I got the impression that you have dealt with some psychosis after getting off medication, and then got over it again. While you were in psychosis, did you manage to understand that it had to do with getting off the medication? I`m afraid that I`ll all the sudden be so far gone and think that what I`m experiencing has nothing to do with medication. Well, I guess I`m lucky in that I`ve found this therapist, who is really critical of the mental health system, and who I feel safe talking about everything with. Right now, we`re in the process of interpreting, and finding meaning in the psychotic experiences I`ve had, which really helps. In psychiatry, psychosis is just looked upon as meaningless expressions of disease it seems like, and it is of course dangerous to talk about there.

I`ve managed to turn my family against the mental health system too, and although they are afraid of psychosis, we work on going through what to do if it happens, so that I will never ever end up in psychiatry again. I`m wondering, how did you interact with your family while you were psychotic? I could really use some advice on that because my experience is that everyone turn against me, and I turn against everyone when I am psychotic. I`ve asked my Mom to not judge me and not be afraid if it happens, but she doesn`t really seem to understand what else to do.

I`m really sorry you had to be on medication for 20 years. That makes psychiatry a really big part of your destiny, and that must be tough to bare. But life is hard on a lot of people I think, in many different cruel ways. It also seems like the most beautiful, rich and meaningful lives are those with a lot of hardship in them. Unfortunately. I got Chronic Fatigue Syndrome when I was 17. That`s now 17 years ago, and mostly the reason I ended up psychotic 7 years ago. For the most part I try to enjoy life as it is in this condition, and I find meaning in things most people may not pay much attention to, but sometimes I`m almost shocked by sorrow and grief too. Hopefully, there`s a deeper meaning and more.

My best
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Re: Looking for advice on AP reduction

Postby Tempulgate » Sep 01, 2016 2:22 pm

Hello CryAngerNow and GettingOffAP and All the Rest,

I am SO happy to find your posts and you have helped me realize that I am not alone in this super- bizarre moment of coming off of psych meds after 18 years. And I don't want to fortify your fears, though I understand them well. I will tell you that for me, for the last few months, the mania and psychosis, to use their terms, have been do-able. The not sleeping is difficult, but I have found some herbs, and roots to be helpful, if anyone would like to know.

I have to pull it together to go to an appointment with a social worker...long story, I am in the justice system now. Trying to see it as insider information to help others with MH differences to avoid my situation and just be more informed.

Thanks again. Take good care today. All the best, T
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Re: Looking for advice on AP reduction

Postby CryAngerNow » Sep 01, 2016 6:09 pm

Hello,

I have had psychosis even after coming off of medications for a couple years. I did not and do not have the support of family in this state or when I'm not in this state. They want me to be back on medications when I have extreme emotions, even if it's about grief or financial insecurity, meaning in life insecurity, isolation, lack of consistency in relationships...etc...

I know my triggers pretty well and am having moments of mindfulness when they come, so some practice.

I think it's AWESOME that you have family that has your back as well as your therapist. I understand the fear when in psychosis though, and I think it's valid fear, with what it brings personally and to those you love. Maybe your therapist can walk you through this or have a plan set up by you?

I still battle with the victimization I have felt with psychiatry. I'm going to a DBT class in 3 weeks at the Hospital that has kept me victimized and I am scared of how I will be triggered going there once a week. I hope it's manageable anxiety. Will see.

I'm glad what I had to say is of some help. Finding a way through my extreme states without psychiatry and without medications has helped me find moments of empowerment and different solutions, or maybe I'm more sensitive in what I NEED to survive through these states. Beyond all else I simply try not to be self-destructive or do harm to others. Though, this is a matter of interpretation I suppose. Because the critical and mean voices and beliefs have had a lot of power for a lot of years. I am grateful I can cry and feel my fear with a couple safe people and that it does pass. And through getting through without MORE damage I am hopeful, at moments, that I can continue to empower myself. Still, I acknowledge my deep fears...
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Re: Looking for advice on AP reduction

Postby GettingOffAP » Sep 02, 2016 5:00 am

Hi Tempulgate,

Yes, it certainly feels bizarre and illegal almost to come off these horrific drugs. I´ve had Chronic Fatigue Syndrom for many years, and being on neuroleptics have made that illness a lot worse. I`m mostly bedridden now, and I can`t even live on my own. I have to live with family. Becoming this exhausted happened while I was in psychiatry, but they didn`t pay any attention to it there. Actually, they didn`t even want to hear about it, and some claimed that I lacked insight into my `negative symptoms`. I have the feeling that one of the reasons psychiatric patients die early, is that their somatic illnesses are not taken seriously.

I`m glad you can handle what comes up in this process of coming off, but it most suck to see a social worker now. I bet you have a lot of `training` in how to act in front of such people. I know I do. I have acquired a `completely normal and happy` persona that I put on in front of mental health workers. Luckly, I`m out of that system, and the therapist I`m seeing now is more worried that I`m not angry enough at everything that has happened to me.

My best

Hi CryAngerNow,

Ok, I guess I misunderstood. That sucks! It`s totally frustrating to be an adult, and having people boss you around, thinking they understand your life better than you do. I`ve been there. I became very compliant, and a `good patient` for some years, thinking that the only way to gain any respect from those around me was to admit that my mind was seriously flawed and sick. I`m so glad I finally found the critics of psychiatry though, and some good books against psychiatry. That armed me with some really good arguments that my family just could not beat.

Yes, my therapist is good, and he has walked others through the process of coming of medication. He won`t be scared of my psychosis, so that`s good. However, if it hits, I don`t know how mindful I´ll be. My therapist also helps me understand why I became psychotic the way I did, and that is really empowering. These experiences had so many important things to make me aware of, and I see now that I had them for a reason.

Oh, it sounds tough what you are going through. I`m really glad to hear that you at least have a couple of people you can talk to, and you sound really strong and determined to manage too. I haven`t heard voices, but my psychotic world is brutal too. I`m normally pretty naive, and I only see the good in people, but boy, when I`m psychotic, the another side of humanity comes forth. The world becomes an ice cold place, and I literally feel people sometimes are out to torture me to death. I guess it all means that I need to realize that people are complex, and that they have many sides. Bad ones too. I`m also learning to see exactly how people around hurt me in my daily life. I see now that I have the tendency to fall into certain unhealthy patterns.

My best
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