Tardive Dyskinesia Update and Good News

As it turned out, my Tardive Dyskinesia was getting worse and worse, bad enough so that people were noticing.  My tongue was making my jaw move to the point that people assumed that my teeth were chattering, and said, “Gee, you look very cold!” or something to that effect.  Or they gave me strange looks on the bus.  Perhaps, also, the TD was getting into my jaw, but of this I am uncertain.

Well, Dr. P and I decided finally that it was time to lower the Thorazine.  Because of insurance (jeepers!) I am only allowed the 200 mg size of Thorazine, and I can’t cut them in half, so I am taking 400/600 every other day.  It’s working out okay, but I suspect it’s too soon to really draw any definite conclusions.

However, the good news is this:  The TD has nearly stopped.  Whereas previously, it went on all day long, just about all  of the time, now it is happening rarely, and not as violently as to make my jaw move at all.  In fact, I got no TD on Saturday until around 7pm.  I phoned everyone I had on my speed dial and told them the good news!  I was so excited!  The sad part was that most people haven’t a clue of the magnitude of this event, but I couldn’t contain myself.  I was bubbling over with joy.

Here are my previous blog articles on the growing problem I was having:

http://juliemadblogger.wordpress.com/2008/10/03/tardive-dyskinesia/

http://juliemadblogger.wordpress.com/2009/06/14/thorazine-update/

Contained in these articles are links to further information on TD.  Here’s another You-Tube I found:

I will not be able to raise the Thorazine back to the previous dose of 600.  Bringing the dose back up will worsen the TD.  It so happens that this is the tendency with many patients.  So this has been a decision I have made based on the fact that I have been stable for a long time.

I have been hoping to get off Thorazine entirely.

One problem I have noticed is that I have an increased sensitivity to caffeine.  I can drink tea but a strong cup of coffee jazzes me up, and makes me uncomfortable.  This is simply something to take note of.  If I have to drop coffee altogether, I will be very sad.  But I do like tea.

4 thoughts on “Tardive Dyskinesia Update and Good News”

  1. Julie;

    First of all, as a fellow mental health consumer (I was dual-diagnosed with schizophrenia and bipolar disorder when I was 17 and beginning Grade 12) I can completely understand the kind of joy you’ve felt by realizing what, all of a sudden, your meds _weren’t_ doing to you. I’ve never had to remove my Paxil (paroxetine, my main antidepressant) or my Zyprexa (olanzapine, my main atypical antipsychotic) from my regimen, although I will admit with the regular exercise and diet changes I’ve managed to stick to for the last three and a half years, my psychiatrist and I were able to knock down my Paxil from 60mg to 40mg with no ill effects.

    That in and of itself was very heartening; I doubt I’ll ever be free of meds, but that smack-in-the-face realization that ‘Damn, I can do this! I can get better!’, and it’s not been the first, was something that made me want to let the people I care about know, quickly and happily.

    I’ve never been on thorazine myself, but I do know how good the positive steps have been for me with my illnesses and my medication and exercise, however long they’ve been in coming or the effort in getting there. Cheers to you, chum, and cheers to us both!

    -ABS.

    1. Thanks! Yes, I actually got off all psych meds. I realized I never had any psych illness at all and never needed psych meds to begin with! What happened was that I went to them for assistance with my eating disorder and got roped into “help” for depression, which led to “help” for bipolar. Somehow, they decided I heard voices. I went along with this but I never heard them. I lied. I had no clue what to say when they asked me, “What do the voices say?” so I made up stuff. Then of course I went back to the old people who said, “We don’t believe you hear voices.” I had no clue what to do. I appealed to the one shrink who happened to be a drunkard. He felt sorry for me, I suppose, and went along with the voices story. I have no clue what he really believed. Truth was, I didn’t want to go back to my mean, manipulative roommate. I wanted to stay in the hospital. Not that it was much better but, you know, the lesser of two evils. Besides, the shower was warm in the hospital, and at home, it was unbearably cold.

      Then, my roommate left. I pretended to be sad, but really, I was thrilled! There were a few more yucky roommates till I realized I was done with that nonsense. My former roommate realized…she retaliated by spreading nasty gossip about me all around town, so I had to move after that. I did just that, picked up and moved away from the baloney. It wouldn’t be the first, nor the last time…..Anyway, you survive, right? Julie and Puzzle

      1. Julie;

        I’m glad you made it to that point (not being on psychiatric medication) when it turned out you didn’t need them at all! Thorazine is a very powerful sedative, and I’m sorry there was a mistaken (hopefully not intentional) identification of a mental illness you didn’t have. I know a lot more about olanzapine (my antipsychotic) and paroxetine (my antidepressant) now than I did years ago, and it’s nothing to joke about to think another body who didn’t need that neurochemical therapy might have been on either. I mean, they both work well for me, but to take them without having a medical need would be a very bad idea.

        I’m very sorry your roommate was such an unpleasant and unkind person. I’ve been fortunate to live with my mother but in a very large house, so I have a fair bit of privacy. And she’s not going to be gossiping about me behind my back. My current psychiatrist has proven time and again he’s someone I can trust, and I’m sorry the doctors who treated you somehow leaped from your eating disorder to bipolar treatment! Some ‘treating’. That you got out of that and back into a decent equilibrium I’m very happy to know, and I suspect you’re feeling better that you’re not being mistreated for a full-blown mental illness you didn’t have in the first place.

        I hope our talk and mutual listening has helped you to even out some of the bumps in your psychological road. It’s a pleasure to make your acquaintance, and my best to you and yours from me and mine!

        -Abs.

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