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"Coming Down" Lovaza Treating Moodswings and Tardive Dystonia: Tardive Psychosis, Tardive Dypshrenia, Tardive Dysmentia Recovery Continues

Oct 18, 2010 - 0 comments
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Tardive Dystonia

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Tardive Psychosis

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Tardive Dysmentia

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Tardive Dysphrenia

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Lovaza

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mood swings

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Experimental Mood Stabilizers

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psychosis

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glycine

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NMDA Receptor Modulates

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Tardive Myoclonus

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tardive dyskinesia

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Tardive Tourretism

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Recovery

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advocacy

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238999?1287454935
  Today was a better day than in a long time. My psychiatrist had prescribed me Lovaza as a mood stabilizer a few weeks ago. It also in augmenting the glycine, as a mood stabilizer just like any standard antipsychotic for a person with schizoaffective was working on standard psychosis. Psychosis along with standard mood swings that were effecting thought and judgment. Paranoia, grandiosity, inflated sense of self importance. However I didn't see my psychiatrist yet although I updated him by phone. I had followed up with a blood test (at his encouragement, this was facilitated so I could have this done as a person who is physically homebound at my apartment, my doctor set this up from the blood lab he is associated with). I saw my neurologist who is a movement disorders specialist. The Lovaza was treating tardive dystonia. This is a clinical first and one that was within potential since it is related to fish oil which has been shown to treat tardive dyskinesia is some studies. But there was something else I was there to tell him. The truth.
   In all these times before I had discussed physical symptoms and had explained what might be neuropsychiatric. I had failed to discuss what was obviously psychiatric. Withholding information is manipulative regardless. However this was a symptom in itself. This time I did things correctly. With that aside we then discussed what could be neuropsychiatric. The catatonia was classified as "atypical catatonia" and stated as neurological. I had recognized that the Lovaza was helping on psychotic thoughts. I could feel it. The world outside didn't appear in some way frightening and falling apart (there has been a tornado and they were clearing the trees afterwards, that had been highly dangerous but it had nothing to do with my physical symptoms such as dysphasia that could be unsafe for me at times . Linking the two was vague and tangential). I had experienced that help before with convential treatment. However there was another effect. I awakened out of a catatonic state. That I had not experienced before and although I could describe it at the time, I could not step out of it. With that treated the "death like" effect and the slowing down of space and time (also part of the tardive dysmentia which it is treating as well) responded began to clear. As well as the tardive dysphrenia, which is a very specific clinical criteria in study, meaning that tardive dyskinesia has spred to the limbic (emotional) system so that when I experienced emotional thoughts or memories it set off convulsions. That has began to mitigate as well. And standard issues such as returning to normal bedtime hours with rapid cycling not interfering. Please note all of these criteria and beneficial effects although noted with standard researchers until clinically documented is still tentative and even then would be a clinical finding not a fact.
   So with my neurotransmitters in touch with it each other it was time to be in touch with the outside world. To go back to seeing family. To see my remaining friends. And to make more. And to get back to advocacy and other issues that have meaning in my life. And to remember where I was until then being that fall and especially Halloween was the onset of a very frightening anniversary date (a standard term where an emotional of an unpleasant time creates flare up symptoms) of when this all started a few years ago. Well thanks to the treatment and follow up I received, the anniversary date has been cancelled. Its time to see what real life events will take its place and plan them...

Giving and Receiving, Tardive Psychosis, Tardive Dysphrenia, Tardive Dysmentia Recovery Progresses

Jul 17, 2010 - 1 comments
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Tardive Psychosis

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Tardive Dysphrenia

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Tardive Dysmentia

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treatment

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Tardive Dystonia

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Research

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dental caries

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filling

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dentist

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accommodation

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Vimpat

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catapres

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tardive dyskinesia

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Tardive Tourretism

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Tardive Myoclonus

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Schizoaffective disorder

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glycine



212859?1280929979
  This week an event occurred that otherwise would have been a minor follow up. My teeth were in pain as was my mouth. The obvious answer would be to go to the dentist who is nearby to my apartment.. The problem being that the dysphagia has proven treatment refractory at this point and I can't speak coherently without choking. At first I was at a loss. But then I remembered that there was one given. If I didn't go to the dentist things would only worsen. And that I had previously given the dentist a list of needs and accommodations (which he had entered into my case file). As I didn't have the communication device yet (that will be an Iphone) I would just have to write on pen and paper and have the dentist note things down I could not communicate coherently. He was very respectful in accommodating my needs (he cleaned my teeth only with hand tools for example) and said the documentation I had given him was helpful for him to understand this. And it was worth it as a cavity was noted that needed further follow up. I did however  explain to the dentist (in writing) that the reason I had not gone in a year and a half was due to the dysphagia and lack of accommodations. And that the reason that I might have accidentally scratched my teeth with the plaque scraper was because of the dystonic spasms affecting motions in my mouth, teeth and hands. The dentist treated me as a rational person with a physical disability which I appreciated. And I focused on what was needed but I did note I had a "neurological loss of cognition" (what they are defining as tardive dysmentia) and he wrote down a letter explaining the needed follow up which I will do when I have the Iphone. As much as I have discussed researchers, one must never forget the doctors one sees all the time that go out of their way to help you. They are just as important.
   The follow up with my neurologist was requested by my psychiatrist and at the appointment I discussed some standard issues like accommodations (that I require for the advanced tardive dystonia, some are in application and some in appeal). I focused on some standard issues such as side effects of medications (taken later in the day the Vimpat causing psychosis, this I monitor for) and on the first day of the application the Catapres causing some mood disruptions and low blood pressure (it is monitored at a 4 day titration because it has become less effective over the years). The criteria of tardive dysphrenia (a more clinically conclusive aspect of tardive psychosis) and tardive dysmentia is being understood (within standard clinical study) in me. The aspects of what appear to be catatonia from what they state may or may not be and are in discussion as to cause and etiology. But it was agreed that the videotape of the extreme convulsive activity I experienced (that was catatonic like) in reaction to a standard stimuli (a bird song) that was mitigated by ginkgo (under research to treat tardive) that we had mailed a dvd to them would potentially be discussed. And with my psychiatrist I discussed standard psychiatric issues and how there was a potential differentiation between those and the neuropsychiatric aspects of tardive (which do disrupt functioning on their own but I can discuss and analyze them as separate that's why they appear to be neurological). It should be noted that in not causing tardive dyskinesia, glycine and the NMDA receptor modulates antipsychotics would not cause unknown aspects of tardive dyskinesia under clinical study either.
   But my goal more and more is to focus on my own recovery. Thus as I have handed them the dvd I am "handing" them back those criteria for further understanding. Its now within the province of noted researchers. There was a family member whose life was saved by a researcher (decades ago). As a child they had some form of coronary dysfunction. They received an operation from a researcher in the field with what was then groundbreaking research. However, the chance for consumer to interact directly with researcher has not occurred before. But its time for me to continue with my recovery and as much as I trusted the dentist as regards my needs and accommodations, I trust the researchers to continue with the work they do to bring a further understanding of safer and more efficacious treatment modalities and their results will benefit countless others...

Continuing to Work With Providers and a Reminder About Personal Responsibility, Tardive Psychosis, Tardive Dysphrenia, Tardive Dysmentia Recovery Continues

Jun 23, 2010 - 0 comments
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Tardive Dysmentia

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Tardive Dysphrenia

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Tardive Psychosis

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Recovery

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Schizoaffective disorder

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glycine

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NMDA Receptor Modulates

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Vimpat

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Lucid dreams

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dream interpretation

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Self Awareness

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Tardive Tourretism

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Tardive Akathesia

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Tardive Myoclonus

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tardive d



205589?1277278145
  I had a dream a few days ago. There were many aspects of it but I'll stick to the most important one. I was in a pool (general primordial element) and there were geese. I was trying to take glycine (which is the antipsychotic agent I take under psychiatric supervision) but the geese were eating it and nipping me to take it away. At the end of the dream all the efforts I had made at my recovery were put to a halt and then the dream suddenly ended as I awoke with a jolt. What did it mean? Firstly dreams have direct physical aspects. The Catapres application had gotten loose and the tardive symptoms had returned so my face felt like it was being "bitten" (which of course woke me up). What was the second (and far more important one). Think about it. Geese don't "eat" glycine (or any standard treatment for that matter). The "geese" symbolized an aspect of me that were "taking away" my mental recovery. What were they? Its not "they". It was an aspect of myself. Perhaps mania and grandiosity. And perhaps just a standard sense that just because I was working to advocate for clinically complex criteria to be noted in me didn't mean I was more important than my psychiatrist's (or any other doctor's) consumers. And these weren't just any geese. They were the ones I remember as a kid that (this was an accidental experiment but one that went awry) had been fed by everyone. They stayed all winter. They were dependent on the bread people fed them (not particularly healthy for birds, they require a full diet). And they became aggressive and nipped at people if they weren't fed. I realized there was that side of me and the more I "fed it" the more self centered I would be, the less I would recover and the less I would help others as well. Perhaps in other aspects of my life as well.
  But there was clear reason at appointments I seemed potentially disruptive. The dysphagia and tic like spasms have disrupted my speech now so that I can't communicate verbally in a rational manner (although I can in writing). But I can communicate with assistive technology. My uncle found out about a working device that would speak what I would type (he found out about it originally for his daughter who due to her own disability is verbally unable to communicate). And my mom is directly looking into helping me find it (as well as other family members) and then I will follow up as well. The appointment that I cancelled will be rescheduled. I will be back and be able to communicate. And as well I will remind myself that I have given my testimony, my ideas and my input but if I have always said recovery is a two way street I have to listen as well. And give my providers the respect they deserve. And credit to the family members who worked to help me. Recovery is not just a series of criteria. Its how you approach and treat people as well. And for a moment I forgot that. And I am thankful the dream reminded me. And I will be sure always to keep that in mind.

"On a Different Note" Going to a Classical Music Concert, Tardive Psychosis, Tardive Dysphrenia, Tardive Dysmentia, A Day Out..

Jun 09, 2010 - 0 comments
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Tardive Dysphrenia

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Tardive Psychosis

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Tardive Dysmentia

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tardive dyskinesia

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Tardive Dystonia

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Tardive Akathesia

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Tardive Myoclonus

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glycine

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NMDA Receptor Modulates

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Research

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treatment

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Schizoaffective disorder

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Vimpat

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Ginkgo Biloba

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Tardive Tourretism



201644?1276144061
  Today I went with a close friend (with someone else nice enough to drive us because of my marked physical limitations, as well there was extreme rain) to a classical music concert. It was at a well known library. There was a church ensemble that was well known that was playing renaissance era music which included chamber music as well as Gregorian chants. I have always enjoyed classical music but have become more interested in early music which is a term for classical music of this time frame. What is also interesting is the history of it. Gregorian chants besides being of course religious music are known to have a direct calming effect. As well they (as the curator who introduced it himself said) have a whole history and have similar music that predates them that is part of the specific psalms that are an essential part of some of ceremonies of Judaism (though clearly different but there was some noted historical influence). I remember those specific recitations not only from the Passover ceremony I went as a child but as well the other day I was thinking about my elderly uncle. I hadn't seen him in a long time and my mother was driving him. He was (after speaking about it) singing a specific recitation for Yom Kippur (thus it being a holiday of fasting, it had a mournful quality, unlike those of Passover which are joyful). He stutters and has trouble communicating (unlike me, this is a disability he was born with, not an adverse side effect) but he can sing in the choir quite well at the synagogue (which is of interest because the area of the brain that processes direct speech is different from that which controls singing and prepared speeches which he recite very well).
   The friend I went with (who assisted me with some accommodations I needed) had gone to church and grown up with this music and of course found it very meaningful. I couldn't say that I myself did not find some meaning as well. I believe that the idea and concept of forgiveness is worthwhile as one aspect that helped me was to let go any sense of  anger about what was in reality an adverse side effect (and thus helped obtained better treatment). As well the idea of not self focusing and fixating on oneself as important, not as more than other people and of course having respect for others. That's important for all of my life but my mental and neurological recovery as well. For researchers my specific recovery is important but I am personally am not and do not seek to be. However part of this involves my mental recovery as well. Before I had the standard moodswings that many people do. Unlike the psychosis, these are still there but there is a separate mood disruption that they are tentatively categorizing as tardive dysphrenia. The tic like utterances that I had to suppress and the inability to comprehend things that I always could would have made a person who had not known me think I was less than rational has they seen me there. And there were set changes of mood disruption and dissociation. It is being understood as neurological (in standard clinical research). However unlike before what I am seeking is to regain my emotions. But in some way they have been disrupted and they are understanding how to treat them through me. But life is about balance. Jump ahead a century later than this music and you have well known composers such as Bach. His compositions on harpsichord were scientific (a title such as an "invention" should clue you in, it was the beginning of the age of scientific discovery). His organ works ("Toccata and Fugue in D Minor") were deeply religious. Neither conflicted. But they were also deeply emotional. Keeping emotions and their expression and logic in balance are part of recovery. So I could say I enjoyed the concert and defining how but my ability to "feel", that is experience and express this enjoyment is less than before. But with neurological recovery that is changing. And through some of the ideas that the music itself expressed and symbolized, I can gain a better understanding on how to think of my own life and my own place in the world. And as I seek to re-enter the world, with better physical treatment and supports and services, some of that understanding will help others. But as they said as the concert "save your applause for the end". But it won't be for me. It will be the researchers who dedicate their lives to newer, safer and innovative treatments whose promising results will benefit us all..