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Go Ahead!! Tardive Dyskinesia, Tardive Psychosis, Tardive Dypshrenia, Tardive Dysmentia Recovery Continues

Aug 28, 2009 - 2 comments
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glycine

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Glutamate Antagonists

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tardive dyskinesia

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Tardive Akathesia

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Tardive Myoclonus

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Tardive Tourretism

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Tardive Psychosis

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Tardive Dysphrenia

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Tardive Dysmentia

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clonidine

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Flexaril

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Vimpat

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Tardive Dystonia

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Recovery

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Research



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Things have changed There's a traffic light on my corner. Its there because I wrote the city government. People have been quite thankful because there were multiple car accidents with fatalities before. I'm not sure if I'm allowed to photograph the local park (city regulations) but the gates around the park were strengthened. There won't be any more episodes of arson. But I won't tell the people who were thankful who is responsible for the traffic light. There is no need to boast or try to take credit. And I'll be moving onto other things. And any way its not "my" traffic light. Many city officials agreed it was a good idea and coordinated it. And one must not forget the people who constructed the traffic lights. Let's say it was a group effort. I just called it to their attention.
  Now let's talk about new treatments. Today I went to a poetry reading. I've built up a tolerance to the Flexaril and Clonidine and could hardly talk because of dysphagic choking spasms and was having off and on dystonic reactions. I said I would not be reading again until I could find better treatment. I was experiencing waves of dissociation, dysphoria and synathesia from tardive dysphrenia. People looked shocked and horrified. But when I look back the homeless man who was there who cycles on and off psychiatric treatment and could clearly benefit from it wasn't doing so well either as regards standard psychosis. His psychosis has had consequences where he ended up on the wrong side of the law. I'm glad I remained in treatment all these years (and remember what I take is psychiatric now, even if its in clinical study). But don't think it stops there. I entered the Access A Ride van and spoke with another person there who has multiple sclerosis. They were working on a documentary about their disability. I spoke with them about the non profit I coordinate. We traded website information. And once I took the ginkgo which boosts dopamine the dystonic spasms began to stop as well as the dissociation, dysphoria and tardive tourettism which together is tardive dysphrenia as well as the tardive psychosis and tardive dysmentia. The Vimpat is helpful but just needs an adjunct. I explained how I was working with the system regarding new treatment modalities as regards antipsychotics (glutamate antagonists, officially NMDA receptor modulates) and to identify, treat and prevent tardive psychosis, tardive dysphrenia and tardive dysmentia. My psychiatrist did believe the Vimpat was working on the tardive conditions (which he and my movement disorders specialist believe I meet the criteria for) and given one more month there will be a potential outreach for the case study. And perhaps a chance to provide testimony on a higher level. And a high level correspondence regarding my glycine recovery already returned. But of this I must preserve confidentiality. But just like all the people in my neighborhood will benefit from the traffic light, especially elderly people and people with disabilities, my mental recovery and neurological recovery if duplicated might very well as well but just like the traffic light I take things one step at a time..

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by rliz, Aug 28, 2009
Congratulations on making your community a safer place!  I'm sure everyone will appreciate your efforts even though you have chosen to remain anonymous.

I did a lot of internet research regarding glutamate antagonists (i.e. NMDA receptor modulates) and had found some interesting overlaps between schizophrenia, bipolar, migraine and glaucoma ( the last 3 among my personal "challenges").  My neurologist, who specializes in migraine and ALS, did not want to get involved in my psychiatric care and therefore would not prescribe what my psychiatrist considers to be "experimental" medication, although he was involved with the Canadian clinical trials for one of the medications which is now approved for use with ALS patients.

This is a bit frustrating to say the least because I cannot currently take any mood stabilizer due to possible vascular side effects.  I'm in a mixed state and/or cycling rapidly, and my recent outbursts have concerned my psychiatriast and frightened an acquaintance.  I'm mortified by my own behaviour but need to complete a series of medical tests before I'm even able to consider restarting a mood stabilizer.

Gritting my teeth would be an understatement, but I'm pretty tough (thank goodness!).  Given all that you and others have been through (myself to a lesser degree) as a result of psychiatric medications, I'm a great believer in risk versus benefit analysis.  You are an inspiration to me and many others, I'm sure.

Thanks for continuing to work on behalf of people with a variety of disabilities.

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by ILADVOCATE, Sep 07, 2009
Thanks. And the traffic light is functioning now and it continues to be easier for me as well as other people in the neighborhood. I would also hope to wrap up this phase of advocacy and have the case study published so that it can generate future recoveries but that decision remains in the hands of my providers and the research psychiatrists they speak to. Anyway, my psychiatrist last time I saw him was actively taking notes on a collage (a bit too disturbing to post here although not offensive by any means) that I had provided my own commentary on. He does read through my journal entries on Medhelp and stated that if the case study went through that he might ask that I print them out for him (that would not include anyone's responses) so he could understand and track my recovery as regards standard psychosis, mood stabilization and the understanding of the three as still yet clinically unknown neuropsychiatric aspects of tardive dyskinesia. In reading through my past journal entries, I can see the effect of the Vimpat on mood stabilization (though as a literal first responder in this regard, even if that's included in the case study it will take further controlled studies on a larger level to understand this in any manne)r. One thing I realized that was not really a "revelation" but did show my level of rapid cycling before is that I should remember that when I see my psychiatrist and neurologist that I am one of many consumers to them regardless of working to generate a case study so I have confined leaving messages (now done via TTY) to neccessities to allow others to be able to call. Its difficult being a "patient" and consumer advocate at the same time but I'm hoping to wrap up crucial aspects of that so I can concentrate on neurological recovery...

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