![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 23 of 23. This is the beginning of the thread.
Posted by sk85 on January 15, 2012, at 7:15:30
Hi,
I have permanent tardive dystonia (cervical form, i.e neck muscles) from taking Prozac. At times it can be quite severe and disabling, and cause significant suffering to me and those around me.
I have also started getting botox injections for it, but because targeting the right muscles is a trial and error process, it has been at the moment rather unsuccesful and I need to wait 3-4 months till next appointment.
I'm interested if there are others out there with this kind of problem? What have you tried (medications, supplements etc) to allieviate it?
So far I've noticed minor improvements from coenzyme Q10, moderate intake of alcohol and perhaps very low dose benzodiazepines. Although they have mostly offered only modest help.
Much help appreciated.-Ikaros
Posted by SLS on January 15, 2012, at 8:44:12
In reply to Tardive (drug induced) dystonia, posted by sk85 on January 15, 2012, at 7:15:30
Hi.
I'm sure you know that you can sometimes use an atypical antipsychotic to reduce TD. Have you given it much thought? Seroquel comes to mind.
- Scott
Posted by Phillipa on January 15, 2012, at 10:12:59
In reply to Re: Tardive (drug induced) dystonia, posted by SLS on January 15, 2012, at 8:44:12
Why now is there such negative side effects from SSRI's? Half the people I know take them and don't have problems. Is it a small majority of people who do experience these severe problems? Phillipa
Posted by sk85 on January 15, 2012, at 15:25:57
In reply to Re: Tardive (drug induced) dystonia, posted by Phillipa on January 15, 2012, at 10:12:59
> Why now is there such negative side effects from SSRI's? Half the people I know take them and don't have problems. Is it a small majority of people who do experience these severe problems? Phillipa
I'm not entirely sure why I developed dystonia from an SSRI, I might have had a predisposition (already lowered dopamine). However there are numerous case reports of other people who ended up with a movement disorder just like myself after taking an SSRI. SSRIs supposedly lower dopamine in brain areas that control movement, and this lowering messes something up, so that the receptors become permanently oversensitive to dopamine and also the wiring of those particular neurons change, and this eventually results in a movement disorder.
Posted by sk85 on January 15, 2012, at 15:37:10
In reply to Re: Tardive (drug induced) dystonia, posted by SLS on January 15, 2012, at 8:44:12
> Hi.
>
> I'm sure you know that you can sometimes use an atypical antipsychotic to reduce TD. Have you given it much thought? Seroquel comes to mind.
>
>
> - ScottYeah, I've actually used Seroquel for this end and it did work...somewhat. I never went over 150 mg per day, because I felt that it was making me more and more emotionally blunted and dull (but it did take the edge off from the spastic attacks). Although I was battling depression at the time aswell and wasn't taking any ADs (for obvious reasons). So the dullness might have been caused by the mix of Seroquel and depression, as Seroquel on its own does little to help depression.
-Ikaros
Posted by poser938 on January 15, 2012, at 17:27:03
In reply to Re: Tardive (drug induced) dystonia, posted by sk85 on January 15, 2012, at 15:37:10
i have tardive dystonia in some muscles in myface from taking effexor. i havent found anything that helps yet, but am about to be trying rTMS. im hoping it will set something right in my brain again and get rid of this dystonia.
Posted by Phillipa on January 15, 2012, at 20:38:23
In reply to Re: Tardive (drug induced) dystonia, posted by sk85 on January 15, 2012, at 15:25:57
If dopamine is involved almost sounds like some sort of Parkinson's Disease? Phillipa
Posted by creepy on January 15, 2012, at 23:44:29
In reply to Tardive (drug induced) dystonia, posted by sk85 on January 15, 2012, at 7:15:30
Tardive, meaning you ceased the medication and its still an issue?
I got a lot of neck twitching and stiffness on prozac and I shrugged it off as anxiety since it wound me up pretty bad.
Posted by sk85 on January 16, 2012, at 10:35:53
In reply to Re: Tardive (drug induced) dystonia, posted by creepy on January 15, 2012, at 23:44:29
> Tardive, meaning you ceased the medication and its still an issue?
> I got a lot of neck twitching and stiffness on prozac and I shrugged it off as anxiety since it wound me up pretty bad.
>Yes, it's now already 2 years since I quit Prozac. I think it's permanent.
Posted by sk85 on January 16, 2012, at 10:41:50
In reply to Re: Tardive (drug induced) dystonia, posted by poser938 on January 15, 2012, at 17:27:03
> i have tardive dystonia in some muscles in myface from taking effexor. i havent found anything that helps yet, but am about to be trying rTMS. im hoping it will set something right in my brain again and get rid of this dystonia.
Have you tried baclofen? I'm wondering whether this could help.
But yes this condition seems to be one for which there is almost no medication...
Posted by Zyprexa on January 16, 2012, at 13:12:15
In reply to Re: Tardive (drug induced) dystonia, posted by sk85 on January 15, 2012, at 15:25:57
I take cogentin for TD.
Posted by sk85 on January 16, 2012, at 14:46:36
In reply to Re: Tardive (drug induced) dystonia, posted by Zyprexa on January 16, 2012, at 13:12:15
> I take cogentin for TD.
I've always had an impression that anticholinergics are effective only when treating acute EPS reactions (most notably when dopamine antagonists are first used), but aren't much use when the condition is tardive that is emerging late in the course of med taking.
Posted by Christ_empowered on January 16, 2012, at 15:48:47
In reply to Re: Tardive (drug induced) dystonia, posted by sk85 on January 16, 2012, at 14:46:36
I'm stuck on 30mgs/day Abilify for "Bipolar I" (read: I'm in between bipolar I and some kind of off beat psychotic disorder). I take loads of antioxidants to prevent TD. I used to get mild tremor (not bad enough to require meds) and stiff gait from the Abilify; a brief dose reduction and lots of antioxidants corrected the problem. In an ideal world, I could switch to a neuroleptic that didn't do this, but Abilify is the only AAP that I've been able to tolerate.
Now, for your situation, I'd say lots of natural form vitamin E (1600 IU, maybe), lots of vitamin C (think several grams--time-release=better absorption), lots of niacinamide (3+ grams daily, divided doses), manganese (I don't know the dosage for this one, sorry), b-100, possibly high dose b-6 (might hurt your stomach a bit, but several hundred mgs/day has helped with TD, akathisia, and other neuroleptic-induced problems...divide the doses).
Pretty much everything I've thrown out there I already take, except for the manganese and the extra B6 (I take 1 time-release b-100 daily). Taurine has been shown (in animals, mind you) to prevent TD and some other neuroleptic-induced problems when given with a neuroleptic. Its also kind of calming, although I don't notice a huge difference (I take 2 grams daily, all at once). I used to take 6 grams daily (2 doses of 3 grams). Doses of 4 grams have been used along with neuroleptics for mania and psychosis. If nothing else, its supposed to be good for your heart, and it seems to have made my hair thicken up. Plus, its cheap.
Good luck. This is a really bad situation you're in. I'm kind of surprised nobody mentioned antioxidants (at least high dose natural form E--that's pretty standard) for your movement disorder. Weird.
Posted by poser938 on January 16, 2012, at 16:17:28
In reply to Re: Tardive (drug induced) dystonia )) poser938, posted by sk85 on January 16, 2012, at 10:41:50
Baclofen? i guess that would work by decreasing the amount of dopamine hitting those receptors that had been "over-sensitized"? well i have tried seroquel and risperdal already, and it seems my dopamine is so messed up that i felt no effects from taking either of those. no emotions suppresion or anything. my plan is to try the rTMS and see what that does. and then after that i may try selegiline in hopes that, after possibly making the dystonia worse at first and then bringing the receptor sensitivity back to normal.
did you have any other effects from the prozac that occured at the same time that you started having dystonia? with me, my hair started falling out 3 times faster and food has a MUCH stronger effect on my emotions. i believe the same mechanism that caused my dystonia is causing these other problems too.
Posted by sk85 on January 17, 2012, at 13:04:00
In reply to antioxidants, posted by Christ_empowered on January 16, 2012, at 15:48:47
> I'm stuck on 30mgs/day Abilify for "Bipolar I" (read: I'm in between bipolar I and some kind of off beat psychotic disorder). I take loads of antioxidants to prevent TD. I used to get mild tremor (not bad enough to require meds) and stiff gait from the Abilify; a brief dose reduction and lots of antioxidants corrected the problem. In an ideal world, I could switch to a neuroleptic that didn't do this, but Abilify is the only AAP that I've been able to tolerate.
>
> Now, for your situation, I'd say lots of natural form vitamin E (1600 IU, maybe), lots of vitamin C (think several grams--time-release=better absorption), lots of niacinamide (3+ grams daily, divided doses), manganese (I don't know the dosage for this one, sorry), b-100, possibly high dose b-6 (might hurt your stomach a bit, but several hundred mgs/day has helped with TD, akathisia, and other neuroleptic-induced problems...divide the doses).
>
> Pretty much everything I've thrown out there I already take, except for the manganese and the extra B6 (I take 1 time-release b-100 daily). Taurine has been shown (in animals, mind you) to prevent TD and some other neuroleptic-induced problems when given with a neuroleptic. Its also kind of calming, although I don't notice a huge difference (I take 2 grams daily, all at once). I used to take 6 grams daily (2 doses of 3 grams). Doses of 4 grams have been used along with neuroleptics for mania and psychosis. If nothing else, its supposed to be good for your heart, and it seems to have made my hair thicken up. Plus, its cheap.
>
> Good luck. This is a really bad situation you're in. I'm kind of surprised nobody mentioned antioxidants (at least high dose natural form E--that's pretty standard) for your movement disorder. Weird.Thanks for your input. I have tried numerous antioxidants (though not really the ones you listed) which have shown benefit in tardive dyskinesia, those particulars being alpha-lipoic acid, manganese, ginkgo biloba and NAC (all have some form of studies backing them up in TD). However none of these have made any difference whatsoever to help with dystonia. I think they would help if the issue is oxidative stress and e.g haloperidol has shown to do this and this is one aspect that probably contributes to the developement of TD by typical antipsychotics.
It also seems that tardive dyskinesia and dystonia are different enough that the same medications that help one, don't help the other (amantadine helps dyskinesia, but makes dystonia worse).
But mostly I think my dystonia is just a result of messed up brain chemistry and wiring that Prozac managed to do in my case. In fact it seems very similar to levodopa induced dyskinesia in Parkinson's where its developement requires first depletion of dopamine (that being caused by the loss dopaminergic neurons), then the brain rewires itself due to this lack of normal dopamine, and then finally when dopamine is restored by the form of levodopa it displays abnormal response to it, thus manifesting as dyskinesia.
So long story short it shows good analogy to SSRI induced movement disorders where SSRIs first reduce dopamine, and then the brain rewires (and this is not just the upregulation of dopamine receptors but myriad of other receptor changes) itself to become hypersensitive to dopamine and once normal dopaminergic flow starts coming back, the abnormal response to it results.
By the way if you're wondering where I'm taking these theories, then I have done some personal research in this, as I happen to be a biochemist (although not a neurobiologist), but even after years of reading, there isn't really a good explanation to all of these pathological events that happen in the case of movement disorders.
So I'm left with the good old trial and error process to find something (or anything) that would somehow just work. I will look into high-dose b-vitamins, although I'm bit sceptical it would make a change, lets hope for the best.
Posted by sk85 on January 17, 2012, at 13:14:21
In reply to Re: Tardive (drug induced) dystonia )) poser938, posted by poser938 on January 16, 2012, at 16:17:28
>seroquel and risperdal already, and it seems my dopamine is so messed up that i felt no effects from taking either of those. no emotions suppresion or anything.
What dose Seroquel did you use?
>my plan is to try the rTMS and see what that does. and then after that i may try selegiline in hopes that, after possibly making the dystonia worse at first and then bringing the receptor sensitivity back to normal.
rTMS is certainly an interesting option. I've tried tyrosine and rhodiola (which acts as weak selegiline), and the result was that tyrosine kept making my dystonia worse (the more and longer I took it) and rhodiola was without much effect.
>
> did you have any other effects from the prozac that occured at the same time that you started having dystonia? with me, my hair started falling out 3 times faster and food has a MUCH stronger effect on my emotions. i believe the same mechanism that caused my dystonia is causing these other problems too.No, I can't really recall anything else wierd felt on Prozac. Just the gradual onset of spasms in my neck area. I was also bit restless on it maybe, but that might have been from the stress that the dystonia was bringing on.
Posted by poser938 on January 17, 2012, at 22:27:23
In reply to Re: Tardive (drug induced) dystonia )) poser938, posted by sk85 on January 17, 2012, at 13:14:21
150 mgs of seroquel
Posted by sk85 on January 18, 2012, at 7:41:21
In reply to Re: Tardive (drug induced) dystonia )) poser938, posted by poser938 on January 17, 2012, at 22:27:23
> 150 mgs of seroquel
Actually I forgot to add one thing.
Anafranil (clomipramine) over 75 mg made my dystonia worse for first few weeks, after which it almost disappeared COMPLETELY. However I was not able to take that because I got dangerously elevated heart rate from it and suffered other side-effects. Perhaps you can take it if all else seems to fail.
Posted by creepy on January 19, 2012, at 15:22:00
In reply to Re: Tardive (drug induced) dystonia )) poser938, posted by sk85 on January 18, 2012, at 7:41:21
Wonder if l-dopa would do anything for that?
Might be worth the 15$ to try.
Posted by sk85 on January 21, 2012, at 8:33:41
In reply to Re: Tardive (drug induced) dystonia )) poser938, posted by creepy on January 19, 2012, at 15:22:00
> Wonder if l-dopa would do anything for that?
> Might be worth the 15$ to try.I have wondered this myself, though from the logic that dystonia is a hypersensitivity to dopamine, you'd expect it to make it worse. Anyone tried it for dystonia/dyskinesia? What were the effects?
Posted by poser938 on January 21, 2012, at 13:40:21
In reply to Re: Tardive (drug induced) dystonia )) poser938, posted by sk85 on January 21, 2012, at 8:33:41
it just seems that your brain would become less sensitive to dopamine as you increase dopamine after a bit, wouldnt it?
Posted by Zyprexa on January 22, 2012, at 22:41:09
In reply to Re: Tardive (drug induced) dystonia, posted by sk85 on January 16, 2012, at 14:46:36
I've taken cogentin for 4 years. Last year I stoped it for a week and the shaky hands came back.
Posted by sk85 on March 8, 2012, at 13:56:10
In reply to Re: Tardive (drug induced) dystonia » sk85, posted by Zyprexa on January 22, 2012, at 22:41:09
Just reporting back to anyone else still having dystonia issues.
I went back on quetiapine 75 mg and it's having an effect on the dystonia after 1 week of taking it. It's still definately there, but it takes the edge off of it. Won't be planning to go on a higher dose, as my past experiments did not show much improvement above the 75 mg (although some reports suggest a higher dose for TD). Best of luck.-Ikaros
This is the end of the thread.
Psycho-Babble Medication | Extras | FAQ
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.org
Script revised: February 4, 2008
URL: http://www.dr-bob.org/cgi-bin/pb/mget.pl
Copyright 2006-17 Robert Hsiung.
Owned and operated by Dr. Bob LLC and not the University of Chicago.