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How To Understand Your Treatment, Diagnosis and Work With Your Provider

Mar 12, 2009 - 0 comments
Tags:

Schizoaffective disorder

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glycine

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Glutamate Antagonists

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Research

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treatment

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tardive dyskinesia

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Tardive Psychosis

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Tardive Dysmentia

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Tardive Dysphrenia

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Tardive Dystonia

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clonidine

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advocacy



70377?1236891062
Although much of what I am undergoing and being treated is experimental, what I went through in working with providers could apply to you and sometimes does. Let me explain. If you have a psychiatric diagnosis and you go for help the first thing you want is medication. So why are they testing you with physical exams? Or asking you about your personal life? First of all, because of various side effects as well as benefits, they want to know if they are any underlying physical conditions. And to rule out that they are not the cause. So take any test your doctor or psychiatrist orders for you even if they are uncomfortable or difficult. Just like I did. Secondly, as for a talk therapist you are still human. Medication and talk therapy work together. If you have personal issues that cause flare ups of symptoms speak to your psychiatrist. But don't assume they will "medicate" it for you. You might need more medication. You might not. Its their judgment. But if a personal issue that's a heavy stressor is setting off symptoms, well stress can worsen any disability. Talk it over with your talk therapist. As for side effects and beneficial effects you'll recieve a handout. And if you want more information go the medication website.
   Don't look for any scary unknown side effects and assume you'll get them. But do report any changes in symptoms or any physical conditions to your psychiatrist and doctor. And realize that any illegal drugs and psychoactive substances that are not yet illegal will only mask your symptoms not treat them. Don't "blame" yourself if you take them. Do go off with them with the support of a recovery group and of course don't start them. Don't think of a goal as being "normal". Everyone is different. Think of recovery as a goal. You are your own person. You have your religion and culture. But if you have feelings that you are special, unique or different and have some powers other people don't, those feelings are not healthy. Speak to your psychiatrist about them. The end goal of recovery is to percieve the real world. Do ask about your treatment, good effects, side effects and exactly what's going on. And if known treatments don't work find out about what else is out there that's been identified and FDA approved and ask your psychiatrist and if they don't know give them cogent clinical information they can use to further look up and consider (and its still within their judgment, I was turned down for some medications in study myself, my provider still makes the decisions).
  Now let's take me. They had to rule out a lot first, temporal lobe epilepsy, ptsd, dissociative identity disorder, Wilson's Disease, inherited dystonia but then with the marked recovery from schizoaffective with glycine noted the psychiatric criteria were ruled out. And with a copper test for Wilson's Disease with a 24 hour urine sample, an EEG and MRI that ruled out temporal lobe epilepsy and a test for genetic dystonia then they knew what it wasn't. Well what was it? In medicine there's a saying "when you see hoof prints, think horses, not zebras". Correct. For me as well. I had some form of dystonia as a child but what it worsened into is unknown. Such as the phenonema of the "match girl". That is neurological. I know because I played an MP3 of someone reading that the other day and it set off dysphagic choking spams and full myoclonic spasms. I'd never do that again but I told my psychiatrist by letter what happenned (no TTY yet). As part of the case study it would make sense to have a PET scan to know excatly what it was that happenned. And right now they are offiically looking into the "unknowns" with the new potential being tardive dysphrenia because that does create dysphoria (thus "the Victorian era") and thus mood alterations are markedly different I got from agitated mixed states before recovery. The Clonidine treats that. The psychiatric elements are that I did have a traumatic childhood so it makes the fear of being lost and abandoned ever more prevelant but with the psychosis in remmission from glycine, the Clonidine patch treating the dysphoric mania/tardive psychotic depression/tardive dysphrenia (as well as standard moodswings) there is a psychological element. "Maternal abandonment". Well its rather scary your whole life having someone scream "I'm not speaking to you" after a minor conflict especially as a child. That person is now diagnosed with cyclothymia (mild bipolar) and they are learning not to do that because its "withdrawing emotional contact" which is a symptom and to avoid emotional trigger points for agitated mixed states. They are going to take medication and see a psychiatrist and because they already have a cholesterol problem (which they are on medication for) they are considering Lovaza which is FDA approved for anti-cholesterol purposes and an experimental mood stabilizer showing good results. This must be cleared with their endocrinologist and then their psychiatrist will consider it. Thus their physical and psychiatric disabilities will both be treated. So for both "knows" and "unknowns" its still the same process. The medical profession has its standards and they make coherent sense. But in knowning how they work and working with them more closely your recovery can only improve.

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