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  1. This may be short, as I just took my evening Clonazepam dose which seems to be the only thing that relaxes my neck muscles (eventually) so that I can stay asleep. It often takes effect by giving me thirty or so seconds of warning that I am about to drop off. So I apologize if I accidentally post gibberish; I don't always get enough notice to put the iThingy down and the random key presses that result might post or just erase all my hard work. But I found this website this evening: Dystonia Medical Research Foundation I wanted to share it because it is a very useful resource so far as I have made use of it. But also because reading the info there seems revelatory and I am too hyper to go to sleep without shouting from some rooftop or another first. I could go into great detail--and I might--but in essence the descriptions of many of the typical symptoms of secondary/tardive dystonia are reading like the solution to this giant puzzle I have been trying to solve for a year and a half and I am at once relieved and angered by the possibility that this could be what is going on with my face, eyes, jaw, neck, shoulders, and the occasional twitchy muscle lower to the ground than chest level. Jaw wants to clamp shut day and night: yes that could be dystonia! Eyes sensitive to light when eye and other muscles freaking out: yes that could be dystonia! Painful spasms that follow cyclical but still unpredictable patterns almost exclusively from the neck up: yes! That could be... Etc. Oh and the Inexplicable fatigue: involuntary muscle contractions are just as energy intensive as voluntary ones. Dystonia may make me feel as though I were working out 18-24 hours a day every single day! It would even explain my voracious appetite for protein, which is much like it was when I did work out regularly. The nausea that interferes with my current efforts to stay fed is still a mystery I guess, although I do want to investigate any relation between constant muscle activity and dehydration since it gets worse if I am without water for long and that aggravates any nausea trying to crop up at the time. The question nobody can answer is why a psychiatrist who took his patient off olanzapine after more than twelve years because that patient was beginning to twitch in a Tardive Dyskinesia sort of way would continue to insist that muscle spasms, pain, and fatigue that have not remitted since the drug was discontinued were "not the Zyprexa". I will concede that I may be fixated on this single etiology to the exclusion of other possibilities, but I still find it appalling that he suggested I get checked for mono when I mentioned fatigue (again) this last time around. So anyway. Please bear with the enthusiasm; it is true that there is no cure for tardive dystonia, but for once in what seems like a lifetime of trying to claim appropriate names for myself, I am very keen to find out if this is indeed a socially-recognizable one for the bulk of what currently ails me. I am vacationing in Seattle right now, but will be looking for a neurologist and/or movement disorder specialist when I return to San Francisco. In the meantime I will text this and a few other links to my MD and my therapist to see if they see me in these symptoms as well as I do. I am also going to take my shiny new Medicare card and go shopping for a different psychiatrist. Tardive Dystonia. I understand why I had never heard if it, but prescribing neuroleptics without having heard of it? I know: the propaganda is no respecter of educative rank, but it took only two google searches as to the current knowledge of tardive dyskinesia for me to come across it. Ok I think I might be sleepy enough to ignore the perpetual shrug that my shoulders find themselves fixed in. I hope that the link is helpful to someone else too.
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