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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 18 of 18. This is the beginning of the thread.
Posted by Enigma on November 28, 2010, at 11:35:06
Suffering from fairly severe dyskinesia now, after consuming a whopping 2 beers last night. I was on several different atypical anti-psychotics earlier this year, one at a time, and most caused dyskinesia symptoms, so I had to stop taking each one (and try another, etc). I didn't think it was tardive as the symptoms went away after stopping each med. I haven't been on any med that causes dyskinesia for at least 4-6 months now.
I fear that I have tardive dyskinesia now, as I've been off all meds for 2+ months, and every so-many days, while trying to sleep, the symptoms return. After having 2 beers last night, I'm somewhat violently twitching, shaking, more like shivering, completely involuntarily, for the past 10 hours or so. Mostly my trunk (body), head, neck, arms, etc. Feels and looks like Parkinson's disease.
I'm out of Klonopin which is the only drug I've tried that stops the symptoms (temporarily), but tried to order more anyway. I guess my pharmacy will try to call my old doctors office for more, but I don't think they will comply, as I haven't seen that clown in over 6 months.
Does anything OTC help stop the symptoms? Any know of other meds that help?
I couldn't really sleep already, and this does not help, not to mention, I look like a freak now. I was supposed to hang out and drink with this "new" friend soon, and it looks like I'm going to have to cancel indefinitely now, thanks to this. The alcohol seems to have made the symptoms 10 times as bad. I only drank to try and help me sleep, as the last 2-3 sleeping pills (prescription) have failed. OTC sleeping pills have no effect on me either.
Anyone else suffering from this? Especially after discontinuing meds?
Posted by Phillipa on November 28, 2010, at 12:40:20
In reply to Now suffering from Dyskinesia, posted by Enigma on November 28, 2010, at 11:35:06
Enigma after you stopped meds? I don't get it? I'm so sorry. Phillipa
Posted by Christ_empowered on November 28, 2010, at 12:45:33
In reply to Now suffering from Dyskinesia, posted by Enigma on November 28, 2010, at 11:35:06
I had weird tics and occasional jerks after discontinuing a combo that included a full-dose atypical and some other meds that probably increased the movement disorder risk.
Anyway, the ticks went away..after a couple years. I've read that vitamin E in high doses can help with mild cases of TD that have developed within the past 5 years. More severe or longer lasting cases aren't generally helped as much. Withdrawal dyskinesia sometimes disappears on its own, although sometimes it actually gets worse before it gets better. I take a bunch of antioxidants plus niacinamide and a b-100 to help prevent TD, since I'm pretty much stuck with Abilify for the foreseeable future. So far, I've found that the mild EPS I had has gone away and the medication is easier to tolerate.
For sleep...maybe high doses of melatonin? I read one abstract where they used 10mgs/nightly in patients with TD and saw significant improvement in their symptoms. I think the patients were still taking neuroleptics.
Posted by Phillipa on November 28, 2010, at 12:46:58
In reply to Now suffering from Dyskinesia, posted by Enigma on November 28, 2010, at 11:35:06
Enigma found this and this list of meds that can cause tardive dyskenisia is horrifying to me. Also also lists antihistamines, antiemetics, SSRI's, Benzodiazapines, plus the MAOI's and other meds you would never suspect. Phillipa
http://www.brainandspinalcord.org/legal/tardive-dyskinesia/medications.html
Posted by Enigma on November 28, 2010, at 12:47:36
In reply to Re: Now suffering from Dyskinesia » Enigma, posted by Phillipa on November 28, 2010, at 12:40:20
> Enigma after you stopped meds? I don't get it? I'm so sorry. Phillipa
I don't get *anything* that's been happening to me in the past 6 months, so welcome to the club.
I've never been off of meds for this long (not in 10+ years), so I have no idea what to expect, but I'm pretty surprised that I'd have "after effects" as I call them, like side-effects, but these are side-effects that occur after stopping all meds. I had effexor withdrawal symptoms for 8 months after stopping that med, so I guess this shouldn't surprise me this much, especially with hard-core meds like MAOI's and AA's.
I have 2 fairly major "after effects" from Nardil and the atypical anti-psychotics, and 1 side-effect that didn't stop after discontinuing Nardil.
Now I'm extremely upset (to put it mildly) that I ever took almost any medication, for psych reasons, to begin with.
Posted by Phillipa on November 28, 2010, at 12:58:07
In reply to Re: Now suffering from Dyskinesia, posted by Enigma on November 28, 2010, at 12:47:36
Well as said don't believe everything you read on the internet but this site writes that Vita E and melatonin I think might help. This is very troubling information. Philllipa
Posted by Phillipa on November 28, 2010, at 13:00:19
In reply to Re: Now suffering from Dyskinesia » Enigma, posted by Phillipa on November 28, 2010, at 12:58:07
This is from google so why a user name? Just google meds for Tardive dyskenisia. Should appear. Hoping someone can give some valid suggestions for you. Phillipa
Posted by ed_uk2010 on November 28, 2010, at 13:00:19
In reply to Now suffering from Dyskinesia, posted by Enigma on November 28, 2010, at 11:35:06
>I fear that I have tardive dyskinesia now, as I've been off all meds for 2+ months, and every so-many days, while trying to sleep, the symptoms return. After having 2 beers last night, I'm somewhat violently twitching, shaking, more like shivering, completely involuntarily, for the past 10 hours or so. Mostly my trunk (body), head, neck, arms, etc. Feels and looks like Parkinson's disease.
First of all, this is not tardive dyskinesia. Your symptoms sound very unpleasant but completely unlike TD.
I think it would help to discuss this with your GP. I'm sorry that you've having such an awful time.
Take care
Posted by Enigma on November 28, 2010, at 16:07:46
In reply to Re: Now suffering from Dyskinesia » Enigma, posted by ed_uk2010 on November 28, 2010, at 13:00:19
> >I fear that I have tardive dyskinesia now, as I've been off all meds for 2+ months, and every so-many days, while trying to sleep, the symptoms return. After having 2 beers last night, I'm somewhat violently twitching, shaking, more like shivering, completely involuntarily, for the past 10 hours or so. Mostly my trunk (body), head, neck, arms, etc. Feels and looks like Parkinson's disease.
>
> First of all, this is not tardive dyskinesia. Your symptoms sound very unpleasant but completely unlike TD.
>
> I think it would help to discuss this with your GP. I'm sorry that you've having such an awful time.
>
> Take careHmm, I don't know about that. I was reading about TD and it's not just in the tongue and mouth, it can be anywhere in your body. They are involuntary movements just like the description of TD talks about. My doctors are clueless, and thus, aren't *my* doctors anymore, which is why I post questions here.
They first appeared when taking many different AA's, and that's a main problem with AA's in general. I can't take any of them.
Posted by Enigma on November 28, 2010, at 16:15:49
In reply to Re: Now suffering from Dyskinesia, posted by Phillipa on November 28, 2010, at 13:00:19
> This is from google so why a user name? Just google meds for Tardive dyskenisia. Should appear. Hoping someone can give some valid suggestions for you. Phillipa
Yeah, I already did that. I would rather hear about peoples' REAL symptoms, and solutions than "general information", about TD and meds that help it, any day.
I read about some meds that help before I posted, but again, I'd rather hear about real people that suffered from it and found a solution to it.
Does anyone else use this forum besides you and ed? :)
I did get one other response, and man, up to 2 years before it goes away? WTF did I do to myself? WTF did the doctors do to me?
I'm not sure how doctors are even legally allowed to prescribe drugs that they have no experience with (*at all*). Man, it's what I PAY them for - their knowledge, not their ability to write a script. Some of us are true victims of this horribly broken medical system. It's tough just to read about other people horror stories, let alone live through them yourself - if you want to call what I do, *living*. I don't.
Posted by Willful on November 28, 2010, at 16:50:33
In reply to Re: Now suffering from Dyskinesia, posted by Enigma on November 28, 2010, at 16:15:49
I haven't had any actual experience with it, but my pdoc discussed it with me.
First of all the symptoms generally get worse after you stop a med.
But it isn't tardive dyskinesia, as that takes time to develop. It shouldn't take too long to stop, as there is usually a relationship between how long the symptoms have persisted before the cessation of the drug, and the length of the aftereffect. This is not absolute, of course. But there's no reason to assume it will be two years...
It probably will be much less.. and should abate over time even before it stops entirely.
Willful
Posted by ed_uk2010 on November 28, 2010, at 17:23:33
In reply to Re: Now suffering from Dyskinesia, posted by Enigma on November 28, 2010, at 16:07:46
>it's not just in the tongue and mouth, it can be anywhere in your body
It can be, but the time course of your symptoms and the type of movements involved sound nothing like TD. I think you need to look for another cause.
Posted by Enigma on November 28, 2010, at 19:55:36
In reply to Re: Now suffering from Dyskinesia, posted by Willful on November 28, 2010, at 16:50:33
> I haven't had any actual experience with it, but my pdoc discussed it with me.
>
> First of all the symptoms generally get worse after you stop a med.
>
> But it isn't tardive dyskinesia, as that takes time to develop. It shouldn't take too long to stop, as there is usually a relationship between how long the symptoms have persisted before the cessation of the drug, and the length of the aftereffect. This is not absolute, of course. But there's no reason to assume it will be two years...
>
> It probably will be much less.. and should abate over time even before it stops entirely.
>
> WillfulThanks for the info. I wish *one* doctor I've had knew something about it, but they don't. Odd that it gets worse after you stop taking the med.
Mine went away after I stopped the meds, for months. Now it suddenly reappears. It's been happening only when I try to go to bed, for some reason. Then alcohol just seems to power it like a lightning bolt stuck it.
Posted by Enigma on November 28, 2010, at 19:57:38
In reply to Re: Now suffering from Dyskinesia, posted by ed_uk2010 on November 28, 2010, at 17:23:33
> >it's not just in the tongue and mouth, it can be anywhere in your body
>
> It can be, but the time course of your symptoms and the type of movements involved sound nothing like TD. I think you need to look for another cause.
>Again, I don't agree. These are the same symptoms I had when I was taking AA's. Not sure why you are saying they "sound nothing like TD". I just read about it again, on a different site. Sounds exactly like TD to me.
Posted by Enigma on November 28, 2010, at 20:09:20
In reply to Re: Now suffering from Dyskinesia, posted by Christ_empowered on November 28, 2010, at 12:45:33
Ok, thanks for the info. Melatonin does a number on me.. can't tolerate it. Gives me disturbing dreams and such. No thanks. I get enough of that when I'm awake.
> I had weird tics and occasional jerks after discontinuing a combo that included a full-dose atypical and some other meds that probably increased the movement disorder risk.
>
> Anyway, the ticks went away..after a couple years. I've read that vitamin E in high doses can help with mild cases of TD that have developed within the past 5 years. More severe or longer lasting cases aren't generally helped as much. Withdrawal dyskinesia sometimes disappears on its own, although sometimes it actually gets worse before it gets better. I take a bunch of antioxidants plus niacinamide and a b-100 to help prevent TD, since I'm pretty much stuck with Abilify for the foreseeable future. So far, I've found that the mild EPS I had has gone away and the medication is easier to tolerate.
>
> For sleep...maybe high doses of melatonin? I read one abstract where they used 10mgs/nightly in patients with TD and saw significant improvement in their symptoms. I think the patients were still taking neuroleptics.
Posted by FluffMama on November 28, 2010, at 22:42:26
In reply to Now suffering from Dyskinesia, posted by Enigma on November 28, 2010, at 11:35:06
> Suffering from fairly severe dyskinesia now, after consuming a whopping 2 beers last night. I was on several different atypical anti-psychotics earlier this year, one at a time, and most caused dyskinesia symptoms, so I had to stop taking each one (and try another, etc). I didn't think it was tardive as the symptoms went away after stopping each med. I haven't been on any med that causes dyskinesia for at least 4-6 months now.
>
> I fear that I have tardive dyskinesia now, as I've been off all meds for 2+ months, and every so-many days, while trying to sleep, the symptoms return. After having 2 beers last night, I'm somewhat violently twitching, shaking, more like shivering, completely involuntarily, for the past 10 hours or so. Mostly my trunk (body), head, neck, arms, etc. Feels and looks like Parkinson's disease.
>
> I'm out of Klonopin which is the only drug I've tried that stops the symptoms (temporarily), but tried to order more anyway. I guess my pharmacy will try to call my old doctors office for more, but I don't think they will comply, as I haven't seen that clown in over 6 months.
>
> Does anything OTC help stop the symptoms? Any know of other meds that help?
>
> I couldn't really sleep already, and this does not help, not to mention, I look like a freak now. I was supposed to hang out and drink with this "new" friend soon, and it looks like I'm going to have to cancel indefinitely now, thanks to this. The alcohol seems to have made the symptoms 10 times as bad. I only drank to try and help me sleep, as the last 2-3 sleeping pills (prescription) have failed. OTC sleeping pills have no effect on me either.
>
> Anyone else suffering from this? Especially after discontinuing meds?
>Hi there,
I am new to the Boards so I hope you won't mind me posting in response with such confidence, but you have nothing to worry about re: TD. Your symptoms are related to the agitation phase of the alcohol - yes, even just two drinks. I promise you that if you stay away from alcohol your symptoms will subside. I see this ALL THE TIME in alcohol/drug counseling - it is specific to alcohol however, not drugs. I know what TD is also, and it is different.
The closest thing I could find on the web to bring a bit of science to my confidence on this issue is located here:
http://www.well.com/user/woa/fsalphar.htm
Read this with a grain of salt since it is written to "scare straight" people with genuine alcoholism. But you do not have to be an alcoholic to get the agitation and involuntary body movements and shivering, especially if you are a sensitive individual.
In two weeks come back and post here - I promise you will be back to your normal self. If not, I'll leave the forum forever! That's how confident I am from seeing so many people with similar effects at the clinic where I work.
Posted by huxley on November 29, 2010, at 0:16:35
In reply to Re: Now suffering from Dyskinesia, posted by Enigma on November 28, 2010, at 20:09:20
Good luck finding a dr that can help you.
I get ticks and jerks cutting down from zyprexa and my dr denies it even causes TD.
Posted by ed_uk2010 on November 29, 2010, at 15:00:26
In reply to Re: Now suffering from Dyskinesia, posted by Enigma on November 28, 2010, at 19:57:38
>Again, I don't agree.
You don't have to :)
>Not sure why you are saying they "sound nothing like TD".
Because the symptoms you describe are not consistent with TD.
>every so-many days
TD symptoms occur every day.
>while trying to sleep
TD symptoms do not occur only whilst trying to sleep. They occur throughout the day, every day. Movements are highly repetitive and patients are not always aware of them. Lip smacking, tongue protusion, blinking, grimacing, and lip pursing are the most common. Other parts of the body can also be affected.
>violently twitching, shaking, more like shivering, completely involuntarily, for the past 10 hours or so.
This sounds highly atypical of TD. In cases of TD, dyskinesia occurs all day, but not during sleep. Twiching for 10 hours is not TD.
>Mostly my trunk (body), head, neck, arms, etc. Feels and looks like Parkinson's disease.
Parkinson's disease is characterised by rigidly, slowness of movement, tremor and a mask-like face. It is not at all like TD, but neither are the symptoms you describe!
Your symptoms sound extremely unpleasant. I am not trying to undermine your distress in any way. All I'm saying is that your symptoms are not suggestive of TD.
This is the end of the thread.
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