Sunday, February 23, 2014

Useless response from the NIMH

I thought that perhaps the NIMH might actually care what someone who really had a mental illness was interested in as a research topic. Or that at least that they would pretend to care.

I e-mailed them last week with a suggestion for a research topic. I stated that I have bipolar disorder and currently take Zyprexa. I will soon be getting to the  age at which I have to decide whether or not to go on hormone replacement therapy. I would really like to know if hormone replacement therapy would increase or decrease my chance of getting tardive dyskinesia, and there doesn't seem to be any published research on this.

So I think that this would be a really good research topic. More and more people are being prescribed antipsychotics. The population is aging. Older women are the most susceptible to tardive dyskinesia. I realize that this probably can't be done as a randomized controlled trial- it would take too long, you can't blind people for 10 years as to whether or not they are taking hormones or not, etc. But it must be possible to do some kind of retrospective study.

I got this long, very legalize type response. First, they cannot give me medical advice- I should talk to my psychiatrist or another health care professional. They cannot discuss the safety of drugs- that is the purview of the FDA. And they cannot influence the topics of mental health research outside of the peer review process- that would be seen as prejudicial. If I want to see my concern addressed by research, I need to contact a researcher who might be interested in doing that sort of research. They did give me a web site that could help me identify researchers.

Well, I did find 2 researchesr whom it might be worth contacting- but I am not holding up great hopes. I e-mailed one of them yesterday. He is not really looking at tardive dyskinesia, but rather the effects of atypical antipsychotics on older adults, primarily metabolic effects. The other researcher- the only one I could find who is actually working on tardive dyskinesia- doesn't seem to be studying it in human beings.

What I find disturbing is that there isn't research being done (at least that is funded by the NIMH) on preventing tardive dyskinesia in human beings. I would think that this would be a big priority. But I am just a mental patient.

1 comment:

Unknown said...

Government agencies are scared by mental illness. I once wrote to some official (senator, representive (doubtful b/c he's a jerk), President) about the need for healthcare and mental health reform and rather than pick up on a thing I said a computer scanned the word suicide which I had not even used in relation to me and sent my information to a crisis center to contact me to ensure I wasn't going to kill myself. While I understand the sentiment, sort of, it was humiliating and annoying b/c nobody listened to my real point after the computer saw that one word.

This isn't scientific but did give us answers before I tried hormonal treatment for menopause--I took some hormones. In my case I had the Mirena in which is just a teeny dose of progestin and it triggered terrible cycling and suicidal issues. After that when I had the hysterectomy even though normally I would have had my ovaries removed since they'd caused problems my dr. left them b/c she felt the change would be "catastrophic". She and my psychiatrist also decided easily that I can't do hormone replacement. So a few months of birth control pills may help you know how you react, not necessarily with TD (although I did immediately have akathesia after getting the Mirena and that's related to TD)but at least you get an idea what your body thinks of synthetic hormones. In my case we really knew since I can't even tolerate tiny doses of inhaled steroids or a minute dose of steroid in a transdermal gel on my foot without getting manic, but that accidental experiment gave us a lot of answers.

In my case I guess I just try to not worry about it. I've had EPS once on Geodon and akathesia 2 times severely and once less severely so I already know I am prone to movement disorders and may have a higher risk of TD as it is. But I'd rather have the most severe case of TD I've ever seen (and that's saying a lot since I worked with pysch patients who were treated with the really nasty early drugs and evil version of ECT, plus I had a patient with a progressive form of TD that was something like Huntington's but not, yet still SO awful) than not be on antipsychotics because I know what that feels like too.

I think that the long-term, unknown effects are scary, but I choose to do what I can to keep living the best I can as long as I can. After my recent toxicity my psychitrist told me that she had another patient who like me didn't tolerate ltihium extremely well but nothing else worked. He is young and about to start dialysis. I can tell she feels terrible about this but this was what he chose, knowing the potential risks and as his kidneys worsened, likely outcome. And now it is here. It's terrible but if it were me I'd do the same (except I wouldn't do dialysis) because you can't even know that you have 20 years but you do know that living tomorrow the best you can is important, however you can get there.

On the other hand you have the ability to do a lot more changing and lowering doses than I've ever had. Even when I was on a ranged dose of Seroquel I didn't get to go low very often. I think it is just so much more important for me than anything else, even Emsam which is really important too (yet I question at times how much it really does since I certainly am depressed enough).

Just Me Jen