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How to Work with Your Provider Responsibly, Take Medications as Prescribed While Understanding Benefits and Side Effects

May 23, 2009 - 2 comments
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Recovery

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Tardive Dystonia

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responsibility

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Research

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Tardive Psychosis

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Tardive Dysphrenia

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Tardive Dysmentia

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Schizoaffective disorder

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glycine

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Glutamate Antagonists

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side effects

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treatment



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There are a lot of "unknowns" in me but there is one "known quantity". I have to work very closely with my psychopharmocologist and neurologist (who is a movement disorders specialist). That doesn't make me different from you. Actually it makes me quite the same. But "responsibility" (a term I prefer to "compliance" as it means taking the medications because you know why they help you rather than just taking them out of fear and not understanding why you need them, some psychiatrists have stated they are now uneasy with this term) applies to everyone. And not just psychiatric but physical disabilities as well. For example saying "I'll do okay on less" is certainly no good but "I'm not feeling well. I'll take one more" isn't either unless that are your provider's exact instructions as written on the prescription label. Or if you speak to them and they advise you.
   Well the other muscle relexant wasn't working so there was a call to my neurologist's assistant (he's away for Memorial Day weekend, doctors are entitled to vacations too). He prescribed Dantrolene. Well I read the full side effect profile. One concern (for many common muscle relexants) was damage to the liver. As this is an older muscle relexant (the newer ones having been tried) the risk is worse. What is the responsible thing to do? Get a blood test every month as directed. And don't take more than I need. Well as this is controlling life threatening dystonic and dysphagic spasms the "need" is there but the directions on the prescription vial state "up to 4 times a day". I will increase it under their guidance. And no more than that amount. Under looking under "adverse side effects" I had noted "feelings of suffocation". "Adverse side effects" are rare. Every medication has them. Including asprin. And natural remedies that "appear safe" haven't been tested for them. So they are "unknown". I am taking ginkgo under supervision for tardive dyskinesia. But that can increase bleeding. Its being monitored. On the other hand my grandmother took it years ago "because its supposed to be good for memory". Studies aren't bearing that out. And she did get increased bruising. And the cranberry pills I took years ago on her suggestion for urinary concerns caused kidney stones. "Natural" does not equal safe. She has since stopped natural remedies. And I only take natural remedies my providers supervise and approve. Now what just happenned? Well I had some bizzare, dissociative hallucinations that were figures approaching me. I thought at first the medication was causing psychosis (that can happen from these medications, at rare times) but as "one of them grabbed me" and my head went back and I started choking I knew it was that adverse side effect that I read about it. I was glad I had informed myself. But the medication is working on the dystonic spasms so the question is should it be stopped.
  What should I do? Well the question is "what did I do". Call my psychiatrist and ask him to be in touch with my neurologist. And if there are concerns that worsen I'll call my neurologist's assistant but rememember there are many "unknowns". They might not know but my neurologist will as to whether it worsened something that was there (tardive dysphrenia) caused it on its own or just isn't working yet (I've had these neurological changes together and its the last day of the Clonidine patch, when they are at their worst, tomorrow they'll be better). So am I scared? No. What do I intend to do? What my providers tell me to. So although there are a lot of "unknowns" including an unknown recovery from schizoaffective disorder, treatments that are in research and becoming known to science and unknown neurological disabilities there is one "known quantity". My provider's knowledge and guidance. So that's why with any medication or disability, being responsible and working with your provider is always the best idea...

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by paranoid_cataclysm, May 23, 2009
I never knew and never would have thought that spasms could be life threatening.  I think a lot of people are scared of the "unkowns" because that's just what fear stems from is the unknown.  I just love it when people come up with a mob intellect and shoot down new medications because they had some negative side effects and totally ignore the positive which every medication has.  I say new as in medications that have only been around for 50 years or less I think, I can't remember exactly how long medications like antipsychotics have been around but I know stuff in that field is still stupidly stigmatized because it's new information and people are always so scared of new things and ideas.

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by ILADVOCATE, May 23, 2009
Thanks. Ultimately everything is a learning process. I can't say this is the right decision for everyone but as new medications came out I was always the first to ask to be placed on them starting with the atypical antipsychotics and Lamictal the year they were FDA approved. What I am on now is a compound that is in Phase II FDA clinical study (google "Dr. Javitt, glycine"). That compound most likely will not become a medication but that class of medications (glutamate antagonists, technically NMDA receptor modulators) is one of three groups of antipsychotics in Phase II FDA study that are showing very promising results. I cannot post clinical studies of course but those two search phrases might find you some interesting results in PubMed. Research moves at a slow and methodical pace because it takes a while to find the right medication in any given class. This one is quite promising though. Since these new classes of antipsychotics do not even work in that area of the brain, tardive dyskinesia may well in the coming generations be a thing of the past.
  All of my (and much can't be publicly posted) advocacy has been working with the system for newer and safer treatments to be developed. Even before I got started with this there were some people who had concerns about ECT but I knew people with suicidal depression whom it literally saved their lives. But now Trans Cranial Magnetic Stimulation is an FDA approved option and has a more favorable long term side effect profile as regards memory loss. The same applies to any treatment modalities in general. As newer, safer treatments become available I tend to speak of them but I am very pro-treatment and always have been. Even as regards the variants of tardive dyskinesia I have I am working the system to find treatments that will help it. For example, although its too new for me to join a clinical study for Trans Cranial Magnetic Stimulation is being studied for tardive dyskinesia and if nothing else helps it once they understand it better as for tardive dyskinesia (its already FDA approved for depression) I would consider undergoing it. I asked my neurologist and he is interested as well for me. For a full list of psychiatric medications in development google "psychmeds123".  

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