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"Awakening" Recovery From Tardive Psychosis, Tardive Dysphrenia and Tardive Dysmentia Continues

Apr 24, 2009 03:51PM - 5 comments
Tags:

glycine

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Rhodiola

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Piracetam

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Schizoaffective disorder

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Glutamate Antagonists

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tardive dyskinesia

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Tardive Dystonia

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Tardive Akathesia

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Tardive Psychosis

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Tardive Dysmentia

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Tardive Dysphrenia

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Tardive Myoclonus

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recovery

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Research

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advocacy



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  I "woke up" today. But not in the sense that I got out of bed. I am speaking of the it in the sense of the book "Awakenings" (a clinical study by the reknowned neurologist Dr. Oliver Sacks). Now why do I say that? Because with the Zofran gone the tardive psychosis, tardive dysphrenia and tardive dysmentia had returned. The person who visited to evaluate me for a home attendant could see I could hardly physically communciate. And they were informed (and please note this is from physical pain and they would not be carried out, I would not be posting here if I did have them, I'd speak to my psychiatrist) that I had suicidal ideations. They could see I was mentally rational as I explained but the tardive tourreticism and psychomoter agitation did unnerve them. That's partially why I am homebound. I do not want other people to see it either. And it unnerved me as well. To say the least.
  But in speaking to the movement disorders specialist I see I asked about other treatments. As of now there aren't any identified medications I haven't tried. But I did remember (and this came from his research not mine and also is being used in standard clinical studies) my psychopharmocologist had let me try Piracetam in the past. As usual in reading this understand any study medication is an unknown quantity. And one not to be tried on your own. And much of what you see on the web is blatant misinformation. Now with that aside I asked permission and kept the dosage lower than before (1 pill). Well interestingly enough the dissociation lifted. The communication disorder and loss of cognition began to improve. Why gingko, rhodiola and Piracetam? Because they adjust dopamine levels. But of course anything that boosts dopamine is not going to be good for schizoaffective. That's why I must report back to them and use care. But just as when I had to the glycine titrated (under my psychopharmocologist's close supervision) I looked back and said "this is what its like not to experience psychosis" now I can say that with the Parkinsonism lifting I can (as I did with the Zofran) say that I stepped out of a world of unreality that was psychotic, depressive and filled with obessions of death. But one entirely differently from schizoaffective. But in the meantime I had (note this was not in the journal entries as its confidential) detailed it in methodical case study fashion as I was instructed to do with the glycine. I can't remember it now and I hope not to experience again. But as they look over my briefings (which will be incorporated into a published case study which can only be considered a tentative finding since its just one person) I can say I accomplished something positive out of this and the benefits will be for others not myself but the point is not to look back at an accomplishment or self focus but to keep looking ahead. And that's the way research aways progresses. In this case as I always say so you can have the mental recovery I did without the neurological disabilities. And for those who may have the neurological disabilities I do to be treated. I thank those who have worked with me and I know their efforts may very well enable this. On a large scale.

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by LetaB, Apr 24, 2009 06:18PM
So, in a nutshell, what is it you are most trying to say here? I am in the depths of my own little hell and just can't bring my withered brain to focus deeply enough to arrive at any complete comprehension. The time line here seems to confuse me too. Can you simplify?


by ILADVOCATE, Apr 24, 2009 06:41PM
Well tardive dyskinesia is a long term side effect of all antipsychotics except for Clozaril as well as some other medications. Tardive psychosis, tardive dysphrenia and tardive dysmentia are still in study in me. They are rare variants of it that affect the mental processes. Anyway, they are far from criteria and except for the (standard clinical) study on myself there is a lot of misinformation on these terms online. Anyway, the medications and treatments helped on them and the experience was a lot like the Parkinsonism depicted in the book and movie "Awakenings". As I've stated in previous entries though the new generation of antipsychotics the glutamate antagonists will never cause tardive dyskinesia or diabetes and have a fuller recovery rate. Its my specific recovery but due to some advocacy I've done on a large scale (I would not be able to publicly identify it but there will be an article in a mental health consumer newspaper I could post a link to soon, I know the case study itself would not be allowed to be posted here) I am advocating for these treatments to be fast tracked through studies. I would never want someone to act without their provider's consent but these new antipsychotics will be FDA approved in a certain amount of time and available for everyone and I am pushing for there to be more research so its sooner rather than later. The neurological criteria I am under study for are still in debate and discussion but my hopes are if other people are found to experience them then they could be treated as well..

by ILADVOCATE, Apr 24, 2009 06:46PM
Well as regards what everyone can do when people are experiencing things at their worst one way to bring yourself out of it is through helping others. Its not just selfless. It takes away a lot of the negativity of the experience. Even before my current recovery when I was at the psychiatric hospital a few times I met friends there and one time came back to do a presentation on various ways to transition back to work. Then I was part of a presentation at the same hospital recently (having nothing to do with staying there, I haven't had the need of a psych. hospital in years) on the new treatments and after that was identified that's how I got a referral to the movement disorders specialist who has been of great help and now I am working with him. Someone if a person finds means to reach out to others they recieve a positive response back in a real world sense. Perhaps that explains it better.

by PenelopeAnn, Apr 25, 2009 06:00PM
I am, the word . . . it's gone. But there. Inspired! that you can look at this from the point of view that you express here, if I'm following it correctly. You described 'awakening' "I stepped out of a world of unreality that was psychotic, depressive and filled with obessions of death"

When you are in that unreality, are you ever aware that you are in an unreality? When my moods are off to a certain degree, if it is just the mood alone, no psychosis, no mixed, then I am aware that I am experiencing something that is related to the disorder and can act accordingly. When the moods are mixed, rapid cycling, or involve psychosis, I lose that insight. I don't know I was in an 'unreality' until it is over and I suddenly become aware of the bad decisions I've made and the mess I find myself in. I was wondering if it was like that for you? Did you know you were in an unreality before you came out? A hint?

by ILADVOCATE, Apr 25, 2009 06:15PM
Well that is complex as what I am describing is neurological so there is self awareness at the time I wrote. It is a medical condition under study but before they came to unknown criteria they had to rule out epilepsy as it is seizure like. Clinically it is related to Parkinson's Disease but from a different cause. Parkinson's has depression, psychosis and dementia entirely seperate from any other form so what treats that will treat me in general. And it does tend to feel the same. I am "aware" of these feelings whereas before recovery from schizoaffective disorder in a psychotic state I would not be. I have written self documentation for the case study while experiencing dissociation. It is seperate from any psychiatric criteria and is neurological. That much they can state for sure.
As for standard moodswings I can't deny I have those as well. The medication I take Catapres is in patch application and on the last day of it there is some form of rapid cycling. Self awareness is hard to achieve on your own. As treatments advance (such as the next generation antipsychotics I discuss) it will improve for everyone. The main thing people can do in the meantime is not just to keep track of their moodswings but other people's reactions. Its good to note how other people are responding. If someone is manic or psychotic other people will note it and its good to learn to pick up social cues. For some people in addition to talk therapy cognitive behavioral therapy can work as well. I found as I recovered the best thing to do was learn from others and their responses and then from standard social cues how to respond back.

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