Dystonia - Have You Ever Experienced this?

I had a movement disorder when on fluoxetine-plus-risperidon and also when on amitriptyline, but that was 'plain' dyskinesia.

However, I do have dystonia in my left hand/wrist, for over 7 years now. Not because of psych meds, but of something else.. probably conversion disorder, although I don't really fit that picture (conversion usually lessens or worsens with stress, mine only lessens when comatose or under general anesthesia). My wrist is bent sideways to about an 85-degree angle (so my pink and ulna are angled about 85 degrees - an angle that you can't really naturally make), my fingers are stretched, but I do have (some) movement in my thumb.
I had injections (BTXA - that's botox. Phenol is also possible) which helped a tiny bit, but not much. And a lot of PT, which didn't help much. I eventually quit the injections and also the PT.. chiropractor I'm seeing for my neck and back now also spends a few minutes on my wrist each session. Also had some plain muscle relaxants (diazepam) when it first developed, but that didn't do anything.

By the way, my drug-induced movement disorders went away after a while without the meds. With fluox-risper it was 3-4 weeks (don't remember exactly) and with amitriptyline, longer.. 6 or 8? After the ami side effects had gone away for the most part, I did keep experiencing episodes of involuntary movements for a while, but that would be an afternoon or something.
Those two 'episodes' went together with a lot of agitation, by the way.

Have you ever tried akineton? It helped me some after the ami.

Thanks so much for sharing!
I have never heard of akineton. I will look it up.

Movement disorders are so strange, the way the "contort" extremities, etc.
I find it very painful.

Thanks again.

WC

I have decreased Abilify to 2 mg. and have 95% less dystonia, with just dropping one dose. I also feel a major energy/mood drop.
It's a catch-22.

I will continue adjusting Abilify over time and observing the effects.
I have tried and re-tried most meds on the market and Abilify seems to help when others do not. We will see.

I don't want to get into "tardive dystonia" if I have not already. (I have been exposed to psych drugs for over 30 years. I fear the tardive dystonias/dyskinesias. Yet, I have a resistant depression.)


WC

The 8 mg drop in Abilify (overnight) was too much. I am suffering badly in other ways from it.
I am going back up, increasing the dose, and more slowly titrating downward. I am getting more dystonia as I again increase the dose; yet, I have got to do a slower taper.


WC

I hope you feel better soon, WC.

All AP's gave me dystonia at high or fairly high doses. I thought it would be permanent. I had twitching in my face, hands, random twitches in my face, and I had it pretty bad in the legs. Abilify was one of the ones that I was on. Discontinuing or significantly lowering these meds have made a difference. For a while, I honestly didn't think they'd ever go away. It seemed a new involuntary twitching or jerking would crop up out of nowhere, then it would just stay there. At the time, propranolol helped a bit in alleviating some of it. If it were to continue, my pdoc was thinking about Cogentin to help with that. Luckily, I am free of these symptoms today, which I am surprised to say. I still do stay on an AP, but not a high dose.

I am so sorry you're struggling. I hope with the slow titration, things will get easier over time. Please keep hope.

Thanks so much!
We'll see how this goes.

WC

A slower taper has been helpful.
At 4 mg, I am getting some mild dystonia.

I still have concerns about developing tardive dystonia and will be doing more research and discussing further with my pdoc when he is back in the office next week.


WC

Hey WC,

You are right to stay on top of this dystonia. I think the longer it is around the more likely it is to become permanent even in the absence of the drug that causes it. Ending up with tardive dyskinesia or tardive dystonia is a bad situation that I think is understated and under-appreciated in terms of the suffering by psychiatry and the general public. It is hard to explain just how upsetting these symptoms can become.

I also have weird neurological disturbances that have changed over time. It started out as a chronic , intense pain only on the right side of my body and eventually I found lyrica helped immensely with that. I never was able to get a consistent diagnosis even though I saw maybe half a dozen specialists here in Canada.

That was pre-existing prior to taking psychiatric medications. Then I developed some dyskinesia from meds but stopped taking those until the symptoms [mainly involuntary biting and jaw movements... very noticeable] finally went away. Now I can spot people with tardive symptoms straight away.

The downside is that i was hospitalized 5 times when I was not taking regular antipsychotics. I also have neuropathies from chemotherapy. I would like to feel good in my body again.

It's bad enough to have a deep fatigue but when you can't just relax into your body and feel good to feel alive in your body, well that is something I really miss.

Please let us know what you find out in your research and experience.

Thank you for your input!

It only makes sense that any drug causing dystonia will put me at a very high risk of tardive dystonia, imho. My pdoc agrees. We continue to sort this out. (I am glad you see the logic in this.)

I am sorry for your difficulties: the pain, the dyskinesias, the neuropathies, etc. I have neuropathies, too, and they are very bothersome.

It's important to realize the potential long-term/permanent dangers of meds and to make highly informed decisions.

Discussing permanent dystonias and permanent dyskinesias is rarely a popular topic. Often, people don't want to know much about these potentially life-changing issues. Many pdocs just brush off these topics, too, quietly crossing their fingers and hoping for the best, while not doing their best to protect their patients. Fully informed consent is critical; yet, rarely occurs.

It's scary to think about; yet, it's reality and we are better off making highly informed choices. Just my own opinion, again!

Thanks so much for your input, your sharing and your support!


WC