Recovery From Tardive Psychosis Continues/What The Experience is Like

Today was Yom Kippur but I ate. I am Jewish but a non believer but I'm not here to discuss that. What I did do was think about what I did wrong but then refocus on what I could do right to correct it. Feelings of negativity never help a person in recovery regardless of religion. One thing I did wrong was to put down my mother for her "acting out" which was from having bipolar. It took a year to talk her down but she agreed to see a psychiatrist and now I must support her recovery. And why I bring this up was because one of the "personas" disppeared. The one I use as a tag of "the little match girl". There was a component of feeling abandoned by my mother. That part was mental. But although dissociative identity disorder is psychiatric I'm not diagnosed with that. When you have schizoaffective you can develop dissociation but you don't recover from that and then develop dissociative identity disorder. My psychopharmocologist agreed but we didn't know what it was until the concept of tardive psychosis was discussed. Given that the dissociation occured during episodes of motor activity from the tardive conditions that was a clue right there. And that Zofran which is being studied as an adjunct for schizophrenia but not used on psychosis treated it because its used to treat psychosis from Parkinsons'. Thus "tardive psychosis" which has been a theory since 1978. Why a "theory"? Because its hard to tell tardive psychosis or "supersensitivity psychosis" from "treatment refractory schizophrenia". And because once identified it would have to be noted as a long term side effect and as soon as researchers noted it, the anti-psychiatry crowd picked it up and used it to tell people to stop treatment which is the wrong thing to say. But I know what its like. I have it. It just hasn't been named yet officially. But its going to a research neurologist so that will change. And its no reason to "anti-medication" because Clozaril can't cause tardive dyskinesia and obviously wouldn't cause tardive psychosis and because new anti-psychotics such as the glutamate antagonists including glycine which I've noted as "making a recovery as good as any FDA approved anti-psychotic or better" by my psychopharmocologist will be released and I am personally advocating for them and researchers are hard at work of course. And my study is in the process of being written up. As for what current anti-psychotics can do in the way of side effects long term and short term and recovery rates my psychopharmocologist has said "psychiatry is unsatisfied with them and clearly better ones are being identified" and "glutamate antagonists are the topic of discussion within psychiatry". But just like Salversan was thought to be a "magic bullet" for syphillis it wasn't. It was derived from arsenic and was toxic and didn't cure advanced cases. But once Penicilin came out it was replaced. But before Penicilin people were thankful it was around as before that "cures" like mercury were used which barely helped. So was Thorazine a "magic bullet"? Well my psychiatrist and many would say "no". But they thought so at the time. And all antipsychotics are derived from how it depleted dopamine. That's the problem. When you reduce dopamine transmission you also reduce it in helpful areas of the brain. That's why people get tardive dyskinesia which is clinically similar to Parkinson's and in me as bad as it, except thankfully it won't progress but if I were on a conventional anti-psychotic except for Clozaril (which I couldn't tolerate) it would. And when tardive dyskinesia extends to the area of the brain processing thought and emotions, that is the frontal cortex you have tardive psychosis. But what does tardive psychosis feel like. If you read the book "Awakenings" you'll find out what psychosis from Parkinson's is like. That's a good start. I lose a sense of space and time and the world appears like its flying around me. I lose my sex drive which is not based in that area as dopamine boosting medications bring it up. I lose my ability to enjoy life or have happinness based around myself. There is a loss of my masculine identity and adulthood. Thus "the little match girl". Thus "tardive psychotic depression" which my psychiatrist is looking up in a clincial research book. I'm not sure whether its always dissociative but the psychosis from Parkinsons' can be. When I go through it there will be full psychotic change of a girl in the Victorian era accompanied but a whole perceptual change (the painting by Joseph Cornell looks markedly similar) and the way I speak "she was so weak and frail", "that is horrid", "her mother was a mad woman" are how someone would speak from that era. During tardive akathesia and psychomoter agiation I would "become" the little match girl and look down. My hand would be in a fist (as she was holding matches) which was autonomic. That was clearly neurological but once temporal lobe epilepsy was ruled out with an EEG test "tardive psychosis" began to seem more and more realistic as a possibility. Or "Iris" from Taxi Driver. That happenned yesterday as I fell to the floor (tardive myoclonus) started vocalizing (tardive tourretticism) and compulsively said (tardive psychosis) "Sport I don't like what I'm doing" during a period of guilt and regret over some issues. But as for "guilt and regret". They don't help anyone. But "forgiveness" does. In 1996 I was prescribed Zyprexa with a typical antipsychotic for paranoid thoughts except in reality the Zyprexa (in me) was causing medication enduced phobia and I needed to be transferred to another anti-psychotic. The two together created tardive dyskinesia. And in 1997 I called it to the attention of the psychiatrist I had at the time that I had tardive dyskinesia because I had eyebrow raising and facial tics typical early warning signs. And he shouted at me "you do not have tardive dyskinesia!". I still get dissociative hallucinations of that. I felt terrifired as it progressed to nocturnal spasms in 1998 that got mislabelled as "insomnia" (probably tardive myooclonus) and despite a good recovery on Seroquel hallucinations of screaming children which was probably the beginnings of tardive psychosis. And then in 2002 the Risperdal didn't "kick out". The antipsychotic stopped working from "supersensivity psychosis" aka tardive psychosis. That's what my psychopharmocologist and I can identify in looking back. But if anyone is reading this its essential to stay in treatment. And to know that tardive psychosis is still a theory. So I'm posting this not only for the researchers and consumers who will read it but providers as well. So they learn once identified how to tell it apart from "treatment refractory schizophrenia" and of course the person would be switched to Clozaril or better yet newer non dopaminergic based anti-psychotics once they are released. And in me Zofran can treat it so that's worth considering. But as for the "story" of the little match girl. Its over. But unlike readers of a sad children's story there's no time to cry. Yes I am mostly homebound and this has severely impacted on my life. But as for the end "and no one imagined what beautiful things she had seen". They know now. They are listening. We are working together. And the write of the story itself Hans Christian Anderson didn't have a happy life as I've written but Kirkegard whom he had a personal revilry did and in reading his works it doesn't take a "leap of faith" to believe my recovery is true. And if you are experiencing this read this. You can be helped too. And if you want to join the advocacy campaign to get the new anti-psychotics out you are a valued member. But a new "story" is being written and this one by medical science, and there's no time for self pity. I've got consumers to help of my own and that's going to get in the way of that. And this isn't a "one person show". Its a "group effort". As soon as the studies are published you'll hear about them too. And you can call them to the attention of your provider. And if you can read this on the internet listen to me, not some anti-psychiatry group. They are taking away the reality of your disability. They are taking away your recovery. And deny you that. Why would you be against treatment? Its the long term side effects that concern people. Of course once identified they should be named and told to people. Disclosure for any medication is neccessary. But needn't worry. Tardive dyskinesia and tardive psychosis can be identified and treatment. And the glutamate antagonists won't cause it and promote a full recovery. And this came from a consumer advocate not a spokesperson on behalf of anyone. But I don't speak on behalf of myself only. This recovery is for everyone. And there are no "happy endings" because there are no guarantees unless we advocate together. So put your voice in and if we all add a word here and there things are going to work out alright. You'll have the mental recovery I have without the neurological disorders. And isn't that what you wanted, I wanted and now the psychiatrists I am working with wanted all along? I can give an affirmative yes.