‘m getting really concerned about some long-term effects of the many medications used over the past 35 years to treat depression (diagnosed) that was really Bipolar I. Primarily I’m concerned about the fact that I was given Trilafon for about 13 years in gradually increasing doses to control “agitation”. I ended up by 2001 at 16mg to 28mg daily in 2004 and 2005. My psych MD began to wonder if I was bipolar in the late 1990’s but didn’t want to “label me” with a bipolar diagnosis.

By 2001 I had begun to develop TD, but every time we tried to lower the Trilafon I’d have an episode of severe agitation and over-activity and the Trilafon would have to be increased to a higher level than ever to control it. At some point (2003?) he added Seroquel to the mix, which already included 6 other pysch meds. In 2004 I made a serious suicide attempt, was hospitalized three times in quick succession as I continued to feel suicidal. Finally, the third hospitalization gave me a bipolar diagnosis and increased the Seroquel as a mood stabilizer.

What I didn’t know until last year was that Seroquel can also cause TD. In 2006 I was hospitalized so I could do a “medication holiday” (suggested by my therapist) to discontinue all 8 meds I’d been on and start over. Abilify, which they tried first, made me want to crawl out of my skin and I was hospitalized again so they could try something else. Neurontin seemed to work, but I still had severe depression and developed mouth sores which continue to this day (I’d love to know why). Finally I changed psych MDs and the new one tried Seroquel and Lamictal in combination and Lexapro for the depression

Mostly the combination has worked well except that we had to add Wellbutrin to the mix to control the depression. When the TD increased suddenly and severely last Oct, the MD pulled me off the Seroquel. Unfortunately I had a hypomanic episode with paranoia within a few weeks and I had to go back onto the Seroquel to control it. The TD seemed to subside until early April when it suddenly reappeared much worse than ever. Now we don’t know if it’s TD and meds-induced or a meds-induced neurological disorder such as dystonia, parkinsonism, or hyperkinesia.

I have trembling, raised body heat, loss of balance, involuntary movements of tongue, hands, arms, feet (especially toes), and legs, making faces I can’t control, muscles spasms that stretch my hands until I’ve developed tendonitis in my elbow, “claw hands”, and speech difficulties. Not all symptoms occur at the same time, episodes last from 15 minutes to hours but none of the new movements are constant. (The subtle tongue movements that I developed years ago are constant and appear to be permanent.)

If anyone out there has heard of TD-like symptoms that come and go like this, could they please reply to this topic? I have a number of other medical conditions that also require medications I can’t discontinue, but all of those MDs insist the symptoms can’t be from anything they’re giving me. My psych MD and the neurologist are stumped and I’m getting desperate. thanks for reading all this!