Posted by iladvocate on November 7, 2008, at 3:20:22
In reply to Re: i have tardive psychosis and dyskinesia » iladvocate, posted by yxibow on October 17, 2008, at 19:15:50
> > I have been identified as having tardive psychosis. Its still not an official criteria but my psychopharmocologist has sent a tentative request for a consult by the neurologist Oliver Sacks for a consultation and if not another neurologist who is a researcher will field it. I did an entry on Wikipedia on it and my psychiatrist supports it. I am being treated with Zofran and it is highly effective. If someone has tardive dyskinesia and tardive psychosis, Clozaril won't worsen it. I already posted I am fully recovered with glycine "as good as any FDA approved anti-psychotic or better" according to my psychopharmocologist. As for tardive psychosis, Zofran is generally used for nauseau from chemotherapy but is off label for tardive dyskinesia and psychosis from Parkinsons' and as an adjunct for schizophrenia. Please let's stay factual and focus on what could be done instead of what went wrong. I don't say this out of lack of sympathy but because I have the most advanced form of tardive that is known, tardive myoclonus and respiratory convulsions and the Zofran helped it, 8 mg. 3 x a day. And the natural remedy rhodiola as identified by Dr. Richard Brown of Columbia University has been of great help as well but ask your psychiatrist first for interactions and no more than 2 pills a day as in raising dopamine it could bring on psychosis as Parkinsons's medications do and in raising serotonin it can bring on elation in dosages above two pills. Try GNC Herbal Supplement 340 mg. one pill at first, then raise it to two if needed. But remember I didn't find out about these treatments by accident. I advocated to get on them and I am advocating within the system to change it and I testified at Hillside Hopsital which first developed Clozaril in the United States and they are researching glutamate antagonists according to the director of psychiatry there. I do advocacy as a voluntarily position as board president of a non profit. We all want the proper treatment and it will be available. Let's look ahead and push forward instead of looking back. That's the best way.
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> That's about the only thing I agree with -- living in the Here and Now. Living in the future though misses the present.
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> I am sure you are in a lot of pain, and I commend you for advocacy about your condition, but both treatments you mention are open label, very investigative options.
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> Furthermore, Tardive psychosis has not even been classified as a condition and there is, naturally so skepticism in the medical community about it.
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> If you happen to gain help from an agent, so much the better, but remember that this is your body and it isn't necessarily a sure fire thing.
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> The only treatment that was tested, and I'm not clear it was a double blind trial, for TD, was tetrabenazine, and it was a small trial at Baylor College.
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> Today it is now available as an orphan drug, and yes, it has been tried on TD -- but it carries a tremendous risk, one that it can develop Tardive symptoms itself although not nearly like Reserpine, but the other thing is that if it works, the patient can be left with not a temporary but a fairly permanent pseudoparkinsonism.
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> The other thing, and you're free to do it, but I wouldn't ever mention one doctor's name online, its violating your privacy.
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> Having said that, he's not without scrutiny and controversy himself.
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> I do hope you find what you're looking for -- the rare and not so rare results of neuroleptic treatment as I can attest, having some sort of unidentified stiffness tardive symptom, which varies, from taking Zyprexa for a month, and an oral tic from 6 years of Seroquel, are unfortunately a part of what neuroleptics can do.
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> I still take Seroquel and the idea is to get off it and the Valium I take, both which gave me a real sense of feeling different than I do now, is on my mind -- but there is not a lot I can do to shift things currently because it would reduce my functionality in life (this is a completely off label for an orphan disorder of no known etiology).
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> I guess the point I'm making is I look at research too, but that's what it is at the present unfortunately, unless you happen to get on the research track, which can help and hurt you, there's absolutely no guarantees, it hasn't been tested on 1000+ people.
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> So it is the Here and Now and living your life -- something that I still have to grapple with because its not one I recognize. Its something I often hide from because I remember, distantly, a quite a different person. The intelligence is there, its just trapped by memory loss and a complex of issues that are too hard to describe.
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> -- tidings
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> Jay
Actually what you are speaking about is akathesia a temporary movement disorder. What I have is tardive dyskinesia, in all its extreme variants to the point where I have respiratory convulsions and choking spasms from dysphagia and myoclonic (full body) spasms. It is so severe I am homebound. I require a home attendant. This is a very real risk that everyone must face though usually it doesn't advance to this point but its not unheard of. I could not tolerate Clozaril. If I took any other anti-psychotic it would worsen the tardive dyskinesia and as of now if I didn't take all the medications I did for tardive dyskinesia I would die. I had two near death experiences, one from choking spasms and one from tardive dystonic spasms in my back before I saw my neurologist. Glycine does not cause these long term effects (I already did a thread on that) and my recovery has been identified as "as good as any FDA approved anti-psychotics or better" by my psychopharmocologist. In 5 years of research on glycine there were no long term harmful effects. He also will be sending me to a research neurologist (Oliver Sacks was indeed contacted but not responded to) as regards the Zofran for tardive dyskinesia and what is being identified as tardive psychosis. Zofran is used for tardive dyskinesia in studies already and shown to be effective and for psychosis from Parkinson's. I can't name the providers involved as that's confidential but anyone who is a provider on this site can contact me and I'll confirm that all this information is factual. I can further say that as regards my recovery from the glycine, the rhodiola as a natural remedy for tardive dyskinesia and Zofran for tardive psychosis as a study criteria, I wrote a letter from the agency I am board president of to the director of the American Psychiatric Association with my psychopharmocologist co-signing today and we both expect responses. I testified at a major psychiatric hospital. The glutamate inhibitor antipsychotics will replace the standard dopaminergic agents but its a matter of getting them through the studies, tardive psychosis will take more research to confirm but Zofran is clearly helpful and I am at the forefront of advocacy. And my provider approves these postings and once the case studies are published links will be made available.
poster:iladvocate
thread:852899
URL: http://www.dr-bob.org/babble/20081106/msgs/861259.html