Mar 02, 2009
People ask me about my disability. Onsite and off. I do confirm that I am under clinical study for all the criteria I discuss but people want to know more specifics. And if people look up many of these terms online they will find misinformation. Blatant misinformation. And here's a good quote: "The great enemy of the truth is very often not the lie, deliberate, contrived and dishonest, but the myth, persistent, persuasive and unrealistic". J.F.K.
I will correct the anti-psychiatry myths before you read them and fall for them. Anyone can correct the myth "schizophrenia doesn't exist". People know they need medication. But do they know why? Or what is going on? The more you understand how medication helps you the better you'll do. I know that I first started hearing voices (auditory hallucinations) at age 13 at the direct onset of puberty. I was at my grandparent's house and woke up after my first nocturnal emmission. I mention that because the day before I did not have psychotic thoughts. The next day "the house was filled with death". I thought my grandparents were "on the brink of death". Well its 20 years later and they are still around. I had become psychotic. Those were delusions. Both of those are "positive symptoms", not as in good but as in something that shouldn't be there that is. Of course as the study on me is published it will take further research to determine if puberty can trigger the onset of schizophrenia in someone with those genetic tendencies. But my social functioning declined (negative symptoms) and I lost my friends and I couldn't really get tests or papers done in school as well as before (cognitive symptoms). Then at age 18, I had a full psychotic break. I needed antipsychotics. The older generation of antipsychotics like Haldol worked somewhat on the psychotic thoughts but they didn't help the negative symptoms. Once I started the atypicals such as Seroquel (which do help negative symptoms) I was better able to relate to people but some symptoms remained. Glycine provided a near complete remmission. As I've posted genetic studies show that people with schizophrenia are lacking in glutamate transmission. Glycine and the glutamate antagonists help restore it. Of course its more complex than that as I am fully aware and the researchers certainly know far more than me. I don't have the knowledge of a clinician and I never claimed to. But I am "recovered as well as on any FDA approved antipsychotics or better". That was named by my psychopharmocologist to the director of the hospital that researched Clozaril in the U.S. and developed it. That's a fact. How other people will do depends on their own biochemistry. We'll see as glycine is incorporated as a treatment and more importantly the glutamate antagonists are realized as FDA approved antipsychotics after they complete the studies.
Let's take the anti-psychiatry myth "madness is a precious gift". Or "madness is a dangerous gift". Actually untreated psychosis can be dangerous. And people experiencing magical thinking do think they have special powers. I did before recovery. Mania isn't "fun". It only seems that way. You lose control. Its terrifying. And hypomania leads to mania. But no one wants to feel "overmedicated". Well its a fact that the new generation of antipsychotics don't have the cognitive blunting or sedation that makes current antipsychotics difficult to tolerate for some people. That's a fact. Studies bear it out.
Now let's move on to the two "controversial" criteria I am under study for. "Tardive psychosis" and "tardive dysmentia". How did they become "myths"? They were studied by psychiatry but hard to pin down. And of course it was diffucult because before the invention of Clozaril all antipsychotics could cause tardive dyskinesia. And potentially tardive psychosis and tardive dysmentia. Not much research generally is done on long term side effects when there are no options. Now Clozaril is an option because it does not cause tardive dyskinesia. And more importantly because Clozaril can have some unpleasent side effects of its own (although its quite helpful for many people) such as blood dyscreias which require weekly blood monitoring and is less used for that reason, the glutamate antagonists which have none of these side effects will be a very good option once they are medications. But sadly, people who were anti-psychiatry picked up on these what could be called factually "hypothetical criteria" and made "myths" out of them. I live with them and it was very hard to have them understood because they are all over anti-psychiatry sites. They misuse my disabilities to tell people not to take medication. And never discussed treating them. So I'll present the facts as know. The theory of tardive psychosis states that it worsens the primary psychosis. Makes sense. The psychosis with a dissociative depression I experienced before anti-Parkinsonian medication is a lot like what I experienced before recovery at my grandparent's house at the onset of schizoaffective disorder. Dysmentia (or dementia) can be part of untreated schizophrenia. And movement disorders occured before psychiatric medication existed. Such as catatonia. So there were rare instances of antipsychotics worsening what was already there. The hypothetical studies correlate with what they area understanding in me. People know what tardive dyskinesia is. But they understand it. They don't live in fear of it. So the other criteria shouldn't be used for fear mongering as well. They should however be a valid reason to research new treatment modalities that won't cause it. And I wouldn't speak against fellow consumers but if you are out there speaking out against psychiatry, instead advocate for new treatments. If you could recover as I have you would feel better. And if you are concerned about tardive psychosis and tardive dysmentia then ask that they be identified and treated. I saw on an anti-psychiatry site this quote "people with tardive dysmentia don't testify. For a reason". That's a specious assumption right there. I am under clinical study for tardive dysmentia and have conducted testimony to help advocate for new treatments for a very valid reason. Why shouldn't I? And more importantly last night someone was asking me what tardive psychosis and tardive dysmentia are like. Well I was experiencing them while e-mailing them. I couldn't get papers organized. I was talking to myself. But it wasn't from schizoaffective disorder. I had lost the perception of space and time. And was undergoing psychosis and dissociation from tardive psychosis. I could see the papers in front of me but just couldn't understand how to put them together to organize them. And was in a state of psychomoter agitation which is psychotic. But its neurological in origin in me. But when I applied the Clonidine patch before going to bed it stopped all that. Completely. Alpha blockers such as Clonidine increase cognition in animals in studies. So it is treatable. The movement disorders specialist who is studying me is very satisfied with the results. But remember before this "frightens" you, all medications (including asprin) have rare side effects and I had movement disorders as a child (akathesia, dystonia) so I was more at risk. So I just corrected the myths you'll read. Feel comfortable taking your medication but if you've tried all current antipsychotics and can't recover you could ask your psychiatrist about glycine which as I've said before must only be taken under a psychiatrist's care. But more importantly here's one fact that you do need to know. The glutamate antagonists will be realized as antipsychotics in the coming years. You will be on them. You will make a stronger recovery than you have now. There's a good amount of research before all this happens but I am advocating so that more companies become interested in researching these. So forget what you read on anti-psychiatry sites about "big pharma" and the like. And sites that take my disability and encourage lawsuits. All of this wastes money that could be used to research new treatment modalities. I will discuss other treatment modalities than glutamate antagonists eventually but right now they are only panning out as adjuncts (additional) antipsychotic agents. But the glutamate antagonists are showing very promising results as primary (stand alone) antipsychotics. So regardless of what you and your provider discuss as current options if you aren't doing well say to yourself "I will recover. There will be a medication for me". And that as happens is not a myth but a fact with growing clinical evidence to prove it...