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Tardive dyskinesia or involuntary movements

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Altostrata

Tardive dyskinesia may occur as a psychiatric drug withdrawal symptom.

 

It means drug-related involuntary movements, such as facial tics, tongue movements, twitching, or other movements.

 

All antipsychotics have a possible adverse effect of tardive dyskinesia. Tardive dyskinesia may occur while you're taking the drug or after you go off it ("tardive" means "delayed").

 

TD also occurs more rarely as an adverse effect from antidepressants and antidepressant withdrawal.

 

There is no defined treatment for TD, although doctors will experiment with various drugs though to correct the "chemical imbalance" responsible for this condition. (It is thought to be related to dopamine dysregulation.)

 

For many people, TD symptoms go away on their own. We have people here who developed TD in withdrawal whose TD symptoms eventually went away.

 

Here is the US National Institutes of Health page on tardive dyskinesia http://www.ninds.nih.gov/disorders/tardive/tardive.htm

 

What is Tardive Dyskinesia?

 

Tardive dyskinesia is a neurological syndrome caused by the long-term use of neuroleptic drugs. Neuroleptic drugs are generally prescribed for psychiatric disorders, as well as for some gastrointestinal and neurological disorders. Tardive dyskinesia is characterized by repetitive, involuntary, purposeless movements. Features of the disorder may include grimacing, tongue protrusion, lip smacking, puckering and pursing, and rapid eye blinking. Rapid movements of the arms, legs, and trunk may also occur. Involuntary movements of the fingers may be present.

Is there any treatment?

 

Treatment is highly individualized. The first step is generally to stop or minimize the use of the neuroleptic drug, but this can be done only under close supervision of the physician.. However, for patients with a severe underlying condition this may not be a feasible option. Replacing the neuroleptic drug with substitute drugs may help some individuals. The only approved drug treatment for tardive dyskenesia is tetrabenazine, which is usually effective but can have side effects that need to be discussed prior to starting therapy. Other drugs such as benzodiazepines, clozapine, or botulinum toxin injections also may be tried.

 

What is the prognosis?

 

Symptoms of tardive dyskinesia may remain long after discontinuation of neuroleptic drugs. In many cases, the symptoms stop spontaneously, but in some cases they may persist indefinitely.

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hippopotamus

I've been doing some reading about this and would like to share some of the info I came across.

 

There seems to be quite a lot of evidence that links the development of TD to cognitive decline: http://www.mindfreedom.org/kb/psychiatric-drugs/antipsychotics/neuroleptic-brain-damage/mosher-bibliography

 

As for the treatment / prevention of TD, there is evidence (though not conclusive) that vitamin-supplementation may be helpful. Ideally, you want to start with the supplementation before you've developed any symptoms of TD, so you may be able to prevent it from happening altogether.

 

See for some info:

 

http://www.tardivedyskinesia.com/tardive-dyskinesia/nutrition.php

 

 

http://www.alternativementalhealth.com/articles/td.htm

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hippopotamus

I dont know how any of this relates to withdrawal... from what I've read, when suffering from withdrawal-symptoms, people may become hyper-sensitive to food-supplements.

 

But for people who are on high doses of antipsychtics, I think it's only sensible to at least consider taking some supplementation.

 

I wonder what Alto's thoughts are about this subject.

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Altostrata

People are maintained on neuroleptics despite the appearance of tardive dyskinesia. I think this is a crime against humanity and indicates something bad is happening to the nervous system that may become permanent.

 

On the other hand, tardive dyskinesia sometimes appears and goes away when you're off the medication, or appears as a withdrawal symptom and goes away. My belief is this means the nervous system has repaired itself.

 

As for cognitive damage, neuroleptics in general are associated with this, not just tardive dyskinesia, and I think they should be used very, very rarely -- much less frequently than they are now -- and not for long periods of time.

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RebelMaven

I dont know how any of this relates to withdrawal... from what I've read, when suffering from withdrawal-symptoms, people may become hyper-sensitive to food-supplements.

 

I had tardive dyskinesia on fluoxetine.  It stopped when I tapered off.  I had to reinstate the fluoxetine and the TD is back with a vengeance.  I have become so hypersensitized to so many things that I am terrified to try anything anymore.  I was in major depressive disorder for 9 months and then in October I drank one Pepsi and it flipped me to hypomanic almost instantly and I am still getting more and more manic.  It's nice to be somewhat functional again but I'm paralyzed when it comes to trying anything that might help because I have very serious paradoxical reactions, I can flip between high and low dramatically rather rapidly and also most meds take about six months to take effect in me and then they hit me like a freight train.

 

Such a paradox. :unsure:

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Altostrata

If you got tardive dyskinesia from taking Prozac again, that is a big red flag that it is harmful for you.

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RebelMaven

I have no doubt all the drugs I am taking are harming me.  That was whay motivated me so highly to gett off of them all so rapidly last year.  But I had to reinstate because I screwed up and tapered off too many fast as we all know now.  That in itself and the damage it could have caused could have changed the whole biochemical scenario and may be why a lot of things are different this time.  Some worse, some better.

 

This whole taper, crash, reinstate is h*ll.  I realize if I had done it correctly the first time things might not be so bad.  So if anyone wants to comment on this please go to my thread and do so.  I desperately need assistance and I am pressured for time due the fact that the window of time I will be coherent, functional, and not too high or low thus affecting my receptivity to advice and instruction may be short.

 

http://survivingantidepressants.org/index.php?/topic/2605-rebelmaven-gabapentin-neurontin-withdrawal-taper/page-12

 

Thanks so much.

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rapunzel2

I just read about tarditive dyskinesia from Mad in America, the article is here http://www.madinamerica.com/2014/02/neuroleptics-tardive-dyskinesia-children/

 

I clicked the youtube links and they were OMG like the scariest things I've seen. I have somehow imagined that TD is like very small movements (movements of tongue etc). I have never realized it can be such an awful debiliating state!! this got me really scared, because I'm still taking seroquel 40mg. and I have been taking seroquel 50mg for about 3 years in total, I think.

 

so my question is - from what dose the TD becomes a threat? I don't trust other sources, because usually they tell that small dose like this is not a problem at all, but I'm suspicious. 

 

It also made me realize how toxic this drug is and I'm considering moving on with decreasing this, instead of prozac, which is giving me more side effects and trouble at the moment. 

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Altostrata

Tardive dyskinesia is a serious side effect of Seroquel and other antipsychotics.

 

We know Seroquel is dangerous. It's a tough call to decide which to taper first.

 

What are your symptoms from Prozac?

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rapunzel2

extreme tiredness and hypersomnia, which disables me from basically living the life. 

 

but my main question is about TD and from what doses it may be a problem with seroquel? cause I know that people take it in amounts up to 1000mg. 40-50mg seems harmless compared to that, but is it really?

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Altostrata

No, it is not harmless at 40mg.

 

Seroquel is often prescribed as a sleeping pill (a horrible idea, but they do it anyway). Is it possible Seroquel is causing your extreme tiredness and hypersomnia? Those are common side effects of Seroquel.

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UnfoldingSky

Bumping this thread.

 

I am looking for possible solutions for TD as I may have a mild case of it, which may be acting up at the moment.

 

Also, TD can also sometimes be caused by benzodiazepines as well if what I read was correct.

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UnfoldingSky

I have just lost the link for where I read this but I just read that sardines contain a nutrient that apparently when isolated was thought to be helpful for TD. 

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UnfoldingSky

Just found the link, in case anyone else is interested:

 

http://www.bajar.com.au/congnetive_mood_&_smart_supplement.html

 

"DMAE exerts favorable effects on those chronic Dyskinesias (including Tardive Dyskinesia) that occur as a result of long periods of use of Major Tranquilizers."

 

I don't know if this works and you have to read the entire part re DMAE as further down it lists some unpleasant "side" effects. 

 

If anyone has tried this please post.  Also it says DMAE is in some fish and sardines contain it in large quantities. 

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Dracony

I'm also scared of Tardive Dyskinesia :( .I find it strange that the farmacist says there is only less than a 1% chance of getting it and researcher say that 20% of anti-psychotic users get it.

 

Either way, I was one of the very very rare patients to get it after just two weeks on Risperidone (= atypical anti-psychotic) and I was young (24) when it happened. My mouth was pursing uncontrollably and it was so embarrassing... Then I've had to take the same medicine again 3 times 3 months and once my mouth twitched very slightly as if it was about to purse.

 

Now I wonder:

1) If anyone has had Tardive Dyskinesia and it came back again: did you get the exact same tics????? Or does it get worse????

2) Does transient Tardive Dyskinesia become permanent????? I hope not.....

 

Thanks in advance..... 

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UnfoldingSky

Hi Dracony,

 

Sorry to hear of your experiences.  I think the rate of TD is much higher than they told you, that 1% sounds like nonsense to me.  Although the other figure sounds a bit high--is that Breggin's figure?

 

I have had TD symptons which I feel were caused by  several drugs, in my case Celexa and Zyprexa.  I only took Zyprexa for maybe a month and a half. 

 

Lately I have barely had any symptoms, over time it seems to be dying down.  I have done some things to help it go away, though I can't be sure they did actually help.

 

From what I have read it is possible for it to just go away on its own, as long as you don't take anything that causes it.

 

Also I read of a case where someone got it from short term Zyprexa use, in their case it was severe, and after seventeen months it just stopped.

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UnfoldingSky

Also, I used to get the lip issue too, haven't had it for at least a few years. 

 

And I don't know if this will be reassuring since he only took the drug that harmed him for a day but a friend of mine was given what must have been an old "antipsychotic" years ago, wound up with a severe dyskinesia reaction, and after the drug was stopped it never came back.  That was over two decades ago.

He even later took psych drugs briefly too, some that can cause it and didn't have a recurrence.

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UnfoldingSky

One more point, the very few symptoms I have on occasion now are quite rare and so mild you wouldn't even know it was happening if you met me.  I only ever get the odd twitch now and they are not obvious.  I have also found that stress can really exacerbate things--however, this past summer when under stress I still only very rarely had symptoms.  It has arrived at a point where I have managed at times to even forget I ever had them. 

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UnfoldingSky

Just recalled another possible case, there was a woman I read of who had mild TD symptoms on starting an AP, during AD withdrawal, stopped the drug and so far as I recall the problem cleared up.

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Cdav

My mom has been on an antipsychotic (sulpiride) for about six years. She developed tardive dyskenesia about a year ago, but she wasn't aware of it. I was the one who noticed her lips twitching constantly. I told her she should come off the antipsychotic but she doesn't want to, she's afraid she'll start hearing voices and losing touch with reality again, which was the reason she was put on the AP. 

 

So the doctor gave her a high dose of Vitamin E 2000 mg. And this seems to lessen her mouth/lips twitching a lot. But if she stops taking the Vitamin E, the dyskenisia shows up again since she's still on the AP. The doctor said this is the only thing that doctors have seen to help Tardive Dyskenisia. 

 

I worry about these side effects on my mom but she has decided to stay on her meds indefinitely because she says she feels much better on them. Unfortunately this is not my case, since I started with my WD syndrome from antidepressants. I'm also taking a high dose of Vitamin E because the doctor believes it might help me also with my WD symptoms. 

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UnfoldingSky

Sorry about your Mom Cdav.  That is an awful predicament to be in.

 

Forgive me as I am spaced out at the moment so maybe misunderstood what you wrote, but, are you having TD symptoms too?

 

Do you feel the vit. E is helping your withdrawal at all?

I was so sensitive to supplements early on that the majority were off-limits to me, even fish oil.  I never tried vit. E though.  Wondering if it might help now as now I can tolerate some herbs again and some supplements.

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UnfoldingSky

Also, Dracony, if you stopped having symptoms once the drug was withdrawn and have been okay for a while I would hazard a guess it would be okay to conclude it isn't going to return. 

 

In the case of my friend who had a dyskinesia while on drug it was very severe and it still never returned, even later when given drugs of the same class.  (Although I'm not recommending you go take something else, I have no idea what that might do.)
 

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Cdav

Hi UnfoldingSk. I'm not sure if what I have is TD because I don't have the mouth twitching thing. But I do have constant muscle twitches all over my body  (I don't know if that could be TD).  I can't really see a difference with the vitamin E, since I'm still on low doses of drugs that help my WD symptoms. It's hard to tell.

 

It does work for my mom, though. Because after a couple of weeks of taking Vitamin E her mouth twitching lessens or disappears. But she's not suffering from WD syndrome, so maybe it is different. 

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UnfoldingSky

Sorry to hear you have the twitching.

If it's any consolation though I've had it too and over time it has more or less resolved, it only happens very rarely now.  Not sure if yours is TD, as I had the lip issues, and other clear signs of TD, but even that is resolving...So hopefully yours will eventually as well. 

 

Also I read your sig and am surprised you have a doctor who acknowledges protracted withdrawal--not to wind this way off topic but is this more acknowledged in Mexico?  In Canada they don't seem to have a clue about it.

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UnfoldingSky

Oh, I can't believe I forgot this, but, someone else I know personally had the mouth issue, it was mild and over time it has resolved.

 

They did a fairly fast taper off several drugs, and had had a reaction to an SSRI, which was severish though not the worst the drugs can offer (ie no akathisia, for instance--basically caused mania.)  They'd been on the drug that caused the reaction for a while (years I believe.)

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Cdav

I really hope my twitching resolves, along with so many other symptoms. 

 

 

I don't think withdrawal syndrome is acknowledge at all in Mexico. Actually, my doctor learned about protracted withdrawal because of me, his only case with this problem. He says he has had other patients that have withdrawal symptoms from antidepressants for 3 months tops. I'm his only patient who's had such a severe and protracted withdrawal. So later on after a lot of trial and error with so many meds, and a lot of damage too, he finally understood what was happening to me. I have been really angry at him because he has hurt with so many meds, (unintentionally obviously), but when I've tried to look for other doctors here in my city or even in other cities in my country, they are completely clueless about withdrawal. So I decided to stay with him, because now he's helping me a lot, he has done research about this. We both know there' no magic bullet now, but he's been able to control my brain zaps and akathisia now, so I'm thankful for that. 

 

But, yes, it's rare for psychiatrists to understand and acknowledge withdrawal, and even rarer to know how to treat it. 

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UnfoldingSky

Hi Cdav, sounds like it's not much better there then.  Sorry to hear your doctor harmed you with more drugs, happened to me too when I reacted to a drug. 

 

I honestly suspect though that there are more of us seeing these doctors than they realize, that people just don't know they are being harmed, thinking they are "mentally ill" instead.  If only there was some easy way to let the world know about protracted withdrawal.

 

Anyway hope your symptoms do improve, from reading your sig sounds like you've been through too much already.

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Cdav

Thank you for your good wishes UnfoldingSky. 

 

Yes, probably there are many more like us, but most people will think they're "naturally" mentally ill and trust their doctors. I did that for a long time, and it really harmed me. 

 

Right now I'm not sure I should trust my doctor any more even though he acknowledges protracted withdrawal. I've been having terrible irritability and uncontrollable anger outburts, and he says it could be withdrawal or maybe just a "normal" manic-like episode. So he wants to throw in a mood stabiliser and an antipsychotic. Now I'm in tears, because I thought he was supposed to help me come off drugs, not give me more and possibly cause more damage. 

 

I really don't know what to do. This is so confusing and soul-crushing. 

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WiggleIt

I am new here and looking for success stories about TD recovery from antidepressants.  I don't totally know how to use this site yet, so I may not be posting in the right place.

Please, please tell me this tardive dyskenisia will go away.  The docs gave me low dose antidepressants for 2.5 years for chronic pain.

 

I read something scary on a general TD info page here that said "many" cases go away, but "some" may persist indefinitely.

 

Mine is manifesting severely.

 

    

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WiggleIt

Addendum to my original message: I was on tricyclic antidepressants.  As soon as I noticed my tongue twitching and neck muscles twitching while on the damn drug, I did a rapid taper off.  I was only on 30 mg of desipramine.

 

Please, success stories about recovering from TCA-induced tardive dyskinesia would be amazing.  I know it is rare, but I have it and am scared.  I talked to one pharmacist and one psychiatrist who have said that they can't find any cases of permanent damage from TCAs.  But I really need to hear from those who have recovered.  It is so much more reassuring than textbook quotations. 

 

As long as I know there is a chance to recover, I can keep moving forward.

 

I am SO angry at the doctors for doing this to me.     

 

I am new here and looking for success stories about TD recovery from antidepressants.  I don't totally know how to use this site yet, so I may not be posting in the right place.

Please, please tell me this tardive dyskenisia will go away.  The docs gave me low dose antidepressants for 2.5 years for chronic pain.

 

I read something scary on a general TD info page here that said "many" cases go away, but "some" may persist indefinitely.

 

Mine is manifesting severely.

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UnfoldingSky

Thank you for your good wishes UnfoldingSky. 

 

Yes, probably there are many more like us, but most people will think they're "naturally" mentally ill and trust their doctors. I did that for a long time, and it really harmed me. 

 

Right now I'm not sure I should trust my doctor any more even though he acknowledges protracted withdrawal. I've been having terrible irritability and uncontrollable anger outburts, and he says it could be withdrawal or maybe just a "normal" manic-like episode. So he wants to throw in a mood stabiliser and an antipsychotic. Now I'm in tears, because I thought he was supposed to help me come off drugs, not give me more and possibly cause more damage. 

 

I really don't know what to do. This is so confusing and soul-crushing. 

 

Hi Cdav,

 

I had the anger and irritability as well.  It's pretty common in severe withdrawal.  In the severe acute phase of withdrawal I became someone I barely recognized.  The anger does go away but it's so hard to deal with in the meantime.  I feel for you. 

 

Are you able to tolerate fish oil?  I wasn't, but took to eating more salmon than I normally would for the Omega 3 content.  I found it helped a little with anger.  I took APs, off label for agitation and they didn't help. 

 

Just know it's not you and it will get better. 

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UnfoldingSky

 

Addendum to my original message: I was on tricyclic antidepressants.  As soon as I noticed my tongue twitching and neck muscles twitching while on the damn drug, I did a rapid taper off.  I was only on 30 mg of desipramine.

 

Please, success stories about recovering from TCA-induced tardive dyskinesia would be amazing.  I know it is rare, but I have it and am scared.  I talked to one pharmacist and one psychiatrist who have said that they can't find any cases of permanent damage from TCAs.  But I really need to hear from those who have recovered.  It is so much more reassuring than textbook quotations. 

 

As long as I know there is a chance to recover, I can keep moving forward.

 

I am SO angry at the doctors for doing this to me.     

 

I am new here and looking for success stories about TD recovery from antidepressants.  I don't totally know how to use this site yet, so I may not be posting in the right place.

 

Please, please tell me this tardive dyskenisia will go away.  The docs gave me low dose antidepressants for 2.5 years for chronic pain.

 

I read something scary on a general TD info page here that said "many" cases go away, but "some" may persist indefinitely.

 

Mine is manifesting severely.

 

 

Hi WiggleIt, and welcome to the site.  What awful circumstances to bring you here.

 

I am not sure how many people here have taken TCAs, given that they don't much use them anymore for depression.  However at least a few of us have developed TD symptoms from various drugs.  As I mentioned above I've read of severe TD going away completely, so I would not lose hope.  Also I suspect that some of the cases that they say are permanent are said to be thus because the person is maintained on the causative drug, it isn't very often that doctors will help a person off antipsychotics and most cases you read of were caused by such.  So truly how are we to know how permanent it really is?

 

Also, keep in mind, doctors can't have tried every conceivable remedy for this, they are pretty limited in what they will try plus often seem to like to try remedies that can make things worse.  I have found a few things which I believe have helped me, you never know what you might find that might help.   While my case was not severe I had some pretty disturbing symptoms, and over time they have died down so much I often forget I had them.  I feel that mine were caused by ADs and APs.

 

So please don't lose hope.

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WiggleIt

Oh, UnfoldingSky, thank you!!!  I read Aria's story and it made me so happy.  Also, your words made me happy, too, that you've read about severe TD going  away.  I've got it all: the ribcage wiggles, face twitch, tongue twitch, twitchy fingers.  It's not present all the time, though.  I have like one big episode per day of whole body wiggles.  I try to hold my face still and I try to keep my lips from puckering. 

 

I am going to a neurologist who specializes in movement disorder to rule out potential causes.  If we find nothing wrong in MRI, then we will know that the TCAs caused this.  I am so scared in every way.

 

I think there's a pretty slim chance that there would be another cause for these symptoms besides the meds.  That would be a GIANT coincidence, but the safe thing to do is rule things out.

 

Haven't gotten any REM sleep in over 24 hours.  Usually, I can get at least 2-3 hours, but I have NOT been able to fall asleep.  Too many muscle tremors and I keep jerking awake from sleep with big, gasping breaths.         

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WiggleIt

Also, UnfoldingSky, you are right that TCAs are not used much for depression anymore.  Mine were prescribed for chronic pelvic pain after sustaining a muscular injury that affected my pelvic muscles.  After I noticed the side effects of muscle tremors, I decided I wanted to get off the meds and give physical therapy a fair shake for my pain.

 

I'm sorry that I can't figure out how to get my facts onto the bottom of my signature!  

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WiggleIt

Hi Cdav, I'm so sorry for what you are going through.  

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