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Tardive dyskinesia or involuntary movements

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UnfoldingSky

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.         

 

Hi WiggleIt, it is atrocious what you have been through. I read your signature and this post and it was all I could do not to start crying.  I am so very sorry you've been put through this and glad that I was able to provide you with recovery stories.

 

I stopped into your thread (I am pretty spaced out right now due to little sleep so haven't yet commented) and noted that mammaP also had TD issues which she said cleared up too, more reason to be hopeful.  She said in her case she didn't even know what it was, I will bet that is the case for many others out there for whom it cleared up.  So I would think there are many more recovery stories than are being noted here (Alto in the OP also said many people have recovered from it.) 

 

Also reading your post made me wonder if maybe mine wasn't a bit more severe than I understood.  How frequently do you get movements if I might ask?  Mine were intermittent too, but I've had some bad ones at points.  Maybe it would be better to say I had moderate TD. 

 

Oh and for me it was at its worst right around the time I became drug free.  Seeing as though you haven't been drug free long I wonder if things won't start looking up then.  Let us hope.

 

I very much wish you a good appointment, I had the MRIs done several times, they never found anything.  Well apparently I still have a brain but you take my meaning.  Like you I would think if they said it was something else that would be a pretty big coincidence. 

 

Re the sleep issues you will find if you look around in the symptoms thread that many others have had sleeping difficulties since being harmed by drugs.  Also sounds like you have a number of other withdrawal issues which many here have had.    I had the terror and zaps, both are gone now, and have had serious issues with cognitive impairment.  In my case caused by many different drugs and reactions and withdrawals, mine was a pretty severe and extreme situation so as not to make anyone here think that this will happen to everyone, but even then I have recovered quite a lot and still have seen improvements recently.

 

So as awful as things might look at present there is reason to believe in recovery.

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UnfoldingSky

Also, thought I should put this here, some anti-emetic drugs (drugs for nausea) also can cause TD.  Just an FYI to be careful everyone if ever you are offered any of the heavy duty ones, particularly if you have had TD issues might be best to steer clear of them if at all possible.

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WiggleIt

Hello again UnfoldingSky,

 

Your responses continue to be a source of hope and inspiration for me.  Just today, I spoke with someone in my pelvic pain support group who ALSO had movements and slowed speech from meds and now, years later, she sounds zippy and wonderful on the phone and is coping with her pain through natural methods.  It is also my goal to take care of my pelvic pain through natural methods only.  Can you BELIEVE they put me on goddamn psych drugs for something that has a chance of recovering with physical therapy?

 

I have movements every day, ranging from jerks every couple of minutes to finger twitching.  The big wiggles happen all over if I get too excited, or too sad, or too scared, or if I push my body too much.  But I need to focus on the fact that they WILL go away.  And I need to remain strong that I am making the right decision in refusing any other meds, and even to refuse supplements.  Some others have expressed success with supplements, but my body is so sensitive that I think food and water are all I should allow into myself.  I just don't want to take any risks, and there are some on here who have said they got sensitive, even to supplements. 

 

Thank you for telling me about the nausea drugs.  I will make sure to stay away from them.  I was given some nausea drugs earlier this year, but I only took 2-4 pills total and have not touched them since March.  I do hope that there was no damage caused.  I am even going to force myself NOT to take any Ibuprofen during my next period.  It will be soooo hard, especially with my pelvic pain, but I must be strong and keep my body clean.   

 

Thank you also for what you said about your issues being worse when you became drug free, because it shows you really understand what's up.  That has also happened to me, so I think you are probably right that I will get better the LONGER I am drug free.  When I tell the docs that the problems got worse off the meds, they all say that "shouldn't" happen.  I can't, for the life of me, understand where they are getting their information.  "Shouldn't" happen versus IS happening are very different things and it is a relief to me that you understand the difference, and that you also understand how the body can react acutely when it gets further away from the drugs.

 

I am heartbroken to hear about your cognitive impairment.  Just so angry that they did that to you.  But you say you are STILL seeing improvements, and that is so hopeful!!!  In fact, from your own evidence, you are just going to keep getting better and better, too!  

 

I am severely cognitively impaired, too.  My family says it's not that bad, but I feel that it is.  It's just so hard for others to know what we are going through.  even when we manage to pull together our words for others, we still know inside ourselves that we are only functioning at half-mast.

 

Got to admit, I'm a little scared with what you said about the cognitive impairment (I'm SUPER pissed about all the meds they pumped into you), but I must do the work of focusing on everything good that you said, and I hope that YOU keep focusing on all the good also.

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UnfoldingSky

Hi WiggleIt, sorry, I didn't mean to make you afraid, my situation involved tons of drugs that cause it, and is quite complicated, but even then the improvements I have seen are quite substantial.  My situation is really unusual and many drugs i took i both had issues with and are known to cause memory problems/cog issues, one for instance, a beta-blocker, had a listed advere effect of reversible amnesia.  So please don't take away from this that it will be as bad for you--even then still, with all the stuff the drugs did i have recovered a LOT and as I said still do see improvements so there is no reason for me to write myself off, nor do I feel then there is reason you should either, especially with considerably less time on drugs.

 

And I've had the supplement sensitivities, they did improve dramatically.  Now I can tolerate many things I couldn't before and some actually are helping.

 

I'll respond to the rest of your post in a bit, have to go eat, just wanted to clear that up first.

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WiggleIt

Thanks, UnfoldingSky.  You are truly an incredible, positive person.  You are focused on all the right stuff.

 

Have a good meal and resound again when you have a free moment!  No rush.  

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UnfoldingSky

Hi again WiggleIt,

Argh, it makes me so angry what they did to you.  It is absurd and ridiculous that they give drugs like this for pain, just like so many other ridiculous reasons they use drugs (another one that is very disturbing is antipsychotics for sleep, eek) especially when there are other remedies to be had.  It's one thing I could rant on about at length, don't even get me started.

 

I am so happy to hear though that you found yet another success story.  Seems we are accruing them at a good clip.

 

And as I said above, I had the sensitivities as well, another problem some people can get in withdrawal, but they do clear up.  You are so fresh off drugs that it's not a big surprise you'd have that going on at present.   Keep up the faith that it will improve though.  Also re the nausea drugs, some of them don't cause TD, I just wanted to put up that warning there as every so often I read of someone being prescribed one that does having no idea they can cause it.  Even then though and even if you already have TD symptoms I am not sure that they would have necessarily made things worse if you happened to take one that does.   And re the Ibuprofen it may be that you can tolerate it, I honestly don't know much about that as I don't take it--if you feel it helps with other problems you might ask others here about their experiences.  Some people are able to tolerate certain drugs. 

 

And what the heck is with them saying TD "shouldn't" be happening, if it's a listed adverse effect it certainly can happen...ARGH. 

 

I hear you re others not understanding too, it can be very hard to appreciate this struggle when so much of it isn't outwardly visible.  But again I have to say that the cog stuff does improve as well, for me it has quite dramatically.  I don't think I worded my post above properly when I first mentioned it, I am very sorry about that, on re-reading it it didn't come across as I meant it to--my point in mentioning it wasn't to scare you but that I have managed to recover a huge amount on this front and still see improvements and as mine was unusually severe it says to me that there is hope for others too.  Plus from time to time now too I also come across stories of healing methods used for cog issues caused by other things, and now that I can take supplements again there is hope that possibly some of these things might help.  So as healing occurs there may be avenues opening up for you that were closed earlier. Some of what I have read about healing from other causes of cog issues  is truly amazing, just when I'd thought I'd heard of everything I found a story about a different health problem that causes severe cog issues where the person apparently recovered completely.  And I know several people who have managed really amazing recoveries from very severe health problems of various kinds, basically miracle stories, so know that so much more is possible where healing is concerned than many people have been led to believe.  So please, please don't write yourself off and please don't think you won't get better.   

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WiggleIt

UnfoldingSky,

 

I totally understand what you were trying to say about the cognitive issues.  You know how it is at this point: there can be a billion stories of hope, but my mind gloms onto the one bad thing, no matter how positively worded.

 

I think one of the big things freaking me out right now is that I can find success stories, but I can't find tricyclic success stories of tardive dyskenisia recovery.  But I did read an awesome post on one of the other threads here that there are tons of success stories, and we shouldn't get discouraged, even when the details are different.  But my mind keeps wanting that one story with all the details being exactly like mine and recovering.

 

There is just SO much on here about SSRI and AP recovery, but I can't find anything about TCAs and TDs.  

 

But I won't write myself off.  And I can say that I owe a lot of that to your support.

 

Were you always hopeful, or did you learn that skill in the process of recovery?

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UnfoldingSky

Also I skipped part of your post, not sure what happened there, in reading it I'd probably say my issues were moderate then.  I have had most of the TD symptoms you list, though not as often as you seem to get them.  And some you didn't list either.  Now it's just the odd twitch, not even worth mentioning. 

 

And I recall reading somewhere years ago about a woman who developed the lip issue, had it badly for a while, again from ADs, and it did die down.  She was very concerned it wouldn't ever leave and if I recall had taken ADs for quite a long time.

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UnfoldingSky

Also I skipped part of your post, not sure what happened there, in reading it I'd probably say my issues were moderate then.  I have had most of the TD symptoms you list, though not as often as you seem to get them.  And some you didn't list either.  Now it's just the odd twitch, not even worth mentioning. 

 

And I recall reading somewhere years ago about a woman who developed the lip issue, had it badly for a while, again from ADs, and it did die down.  She was very concerned it wouldn't ever leave and if I recall had taken ADs for quite a long time.

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UnfoldingSky

UnfoldingSky,

 

I totally understand what you were trying to say about the cognitive issues.  You know how it is at this point: there can be a billion stories of hope, but my mind gloms onto the one bad thing, no matter how positively worded.

 

I think one of the big things freaking me out right now is that I can find success stories, but I can't find tricyclic success stories of tardive dyskenisia recovery.  But I did read an awesome post on one of the other threads here that there are tons of success stories, and we shouldn't get discouraged, even when the details are different.  But my mind keeps wanting that one story with all the details being exactly like mine and recovering.

 

There is just SO much on here about SSRI and AP recovery, but I can't find anything about TCAs and TDs.  

 

But I won't write myself off.  And I can say that I owe a lot of that to your support.

 

Were you always hopeful, or did you learn that skill in the process of recovery?

 

 

Hi WiggleIt,

 

Hi WiggleIt, I suspect it is going to be hard for you to find particular stories about TCAs and TD, because TCAs were most commonly used back before the net was popular so success stories will likely be hard to find online.  I would guess the closest you will get then are the SSRI stories.  However I've often read they think SSRIs are more dangerous than the older ones (not sure how they rank that) so that people are recovering from TD caused by them suggests it is even more likely for you.

 

Also I have to say sorry again, re the cog issues comment. I need to be more careful in what I write, I don't want to make you more afraid. I do understand about the fear. 

 

As to whether I was always hopeful, I actually am a bit strange. On the one hand I was among the most pessimistic people you could meet.  When the drug issues I had got to be serious I thought my life was over.  You'd have had a hard time convincing me otherwise.  I used to read online and would think I was worse off than just about everyone I read about, but over time I came to  find out many people had actually recovered from really severe stuff they either just didn't often mention it, or they left and never came back once they did get better.  This stuff can be so difficult to revisit once you are recovered that I can understand why that would be, but at the same time it painted a very distorted picture of just what would happen.  It took me quite a while to finally get this, one day someone online casually mentioned they'd recovered from a severe effect of a drug I had which I thought would be permanent (has cleared up completely) and I had not the slightest idea from reading their posts that they ever had it, thought they had had a way easier time of withdrawal than I had.  So that really tipped me off that there were people whom for whatever reason weren't saying much about the awful stuff they'd recovered from (maybe this person didn't want to scare those who wouldn't get it.)  So it was helpful realizing that, but still what with withdrawal really ratcheting up the fear and the altered mindstates it can cause I still wasn't very optimistic at the beginning.

 

On the other hand both before this happened and while I was learning about what had happened and looking for solutions over time I accrued so many stories of healing from all sorts of situations that some small part of me tends to believe very deep down even when in a very bad frame of mind that a person has the potential to recover from many more problems than is popularly believed.  Even if they are severe and even if they are even life-threatening.  Even problems they say are incurable.

 

One reason is, someone I know suffered a severe head injury once that he was not expected to survive, and not only did he do that but he recovered to such an extent that his brain scans come back fine now and before that they showed obvious signs of trauma.  He wasn't even expected to live through the night after they found him, and was in a coma for a while too afterward, yet if you met him you'd be hard-pressed to even believe it happened.   I know of or have spoken to other people with amazing healing stories too, he's not the only one. So they can counterbalance the fear.

 

So I guess after a while you kind of learn to not let any one negative story really be the last word.  It can affect you but situations do change. Sometimes down the road you also find out something you read was wrong, too (some well meaning doctors sometimes make very alarmist pronouncements for instance about the dangers of drugs, intending to keep people away from them and over time I've  found out some of them weren't correct) and as I've seen that happen I have kind of trained myself to not be too attached to those stories and to keep looking for positive stories.  And that is not to minimize at all what any person is going through any given time or to say it was easy either. 

 

And that story of the man who recovered after many months from severe TD really did help too as in his case he actually had tried to take his life because of it and then it went away.  Imagine if he had succeeded.

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WiggleIt

I read this post when you first write it, but took some time to respond.  I apologize for my delay.  For whatever reason, the wisdom you have shared in this post is sinking in with me more today.  I thank you.

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UnfoldingSky

No worries, glad to be of help.

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Cdav

Hello, I hadn't seen your replies Unfolding Sky and WiggleIt. 

 

Thank you both for the good wishes. My irritability and anger are gone for now. This was happening because of some changes the doctor was making on meds (supposedly to help me with withdrawal). I tried the antispychotic and an anticonvulsant he put me on (to try to help WD sypmtoms, but it made everything much WORSE!. I got horrible horrible symptoms of akathisia, twitching, anger, etc… 

 

So I decided to stop with those new meds, and I feel much better. I learned the hard way not to throw in more meds, and just be patient. 

 

I'm in a window right now after a long time of wavy days, so this gives me a lot hope. Twitiching has almost disappeared completely. I know it might come back, but this makes me understand all the horrible symptoms and suffering will eventually subside. 

 

I had stopped fish oil due to the severe agitation, but I introduced it again 2 days ago and I'm tolerating it well. 

 

WiggleIt, I'm sorry for what your going through. But like Unfoldking Sky said, even if our altered states of mind and symptoms make us think that this will last forever, it won't. I think hopelessness is an unavoidable part of withdrawal, and in my case, hope has been learned and mostly it has come during windows, even if they last an hour our less. You will notice windows when your symptoms improve. Maybe you could give Vitamin E a try? A high dose. And see if it helps? As long as you tolerate it. 

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UnfoldingSky

Hello, I hadn't seen your replies Unfolding Sky and WiggleIt. 

 

Thank you both for the good wishes. My irritability and anger are gone for now. This was happening because of some changes the doctor was making on meds (supposedly to help me with withdrawal). I tried the antispychotic and an anticonvulsant he put me on (to try to help WD sypmtoms, but it made everything much WORSE!. I got horrible horrible symptoms of akathisia, twitching, anger, etc… 

 

So I decided to stop with those new meds, and I feel much better. I learned the hard way not to throw in more meds, and just be patient. 

 

I'm in a window right now after a long time of wavy days, so this gives me a lot hope. Twitiching has almost disappeared completely. I know it might come back, but this makes me understand all the horrible symptoms and suffering will eventually subside. 

 

I had stopped fish oil due to the severe agitation, but I introduced it again 2 days ago and I'm tolerating it well. 

 

WiggleIt, I'm sorry for what your going through. But like Unfoldking Sky said, even if our altered states of mind and symptoms make us think that this will last forever, it won't. I think hopelessness is an unavoidable part of withdrawal, and in my case, hope has been learned and mostly it has come during windows, even if they last an hour our less. You will notice windows when your symptoms improve. Maybe you could give Vitamin E a try? A high dose. And see if it helps? As long as you tolerate it. 

 

Hi Cdav, sorry to hear the AP didn't work out though glad things are improving.  I had a hard time with an AP causing akathisia too.  I hope your window continues!

 

It's interesting that you now can tolerate fish oil, I coudn't in severe withdrawal, it makes me wonder if maybe I could now, as now I can stand many other things I couldn't back then. 

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Cdav

Unfolding Sky, thank you for your good wishes.  

 
Unfortunately, my window closed a bit 2 days ago. And right now I'm feeling a lot of twitching again. This twitching is a little painful and seems to go together with very uncomfortable sensations in my head (pressure, pulling, burning feelings). The twitching is happening mostly in my arms, hands and back. It is really frustrating to be going through this again. 
 
Another symptom I'm having is some kind of uncomfortable feeling in my jaw which also causes a tremor on it. I read earlier today on one of your posts (I don't remember exactly where) that you used to have some problems with your jaw? I've had really bad jaw tremors since I had a bad reaction to prozac and now they come back whenever I have waves (This time it wasn't as severe as before). What were your jaw symptoms exactly? Do you think this might be TD? 

 

 

 

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Jojool

I have developed what I think is TD.  My tongue constantly moves, I twist my jaw and clamp down on my teeth.  I am ruining my bite, teeth are loose and moving!  I am so scared that this will be permanent.  I truly believe it is because of Abilify.  I was on Abilify for almost 2 years, tried to get off of it 4 times with horrific anxiety when tapering.  It was the worst anxiety of my life.  I never had any anxiety issues before taking Abilify. 

 

I finally tapered off and quit this devil's drug about 2 months ago.  It was difficult, but I was determined to get off of it.  About 2 weeks post quitting Abilify, I started developing these strange symptoms with my mouth.  It has gotten to the point where I find it difficult to talk! 

 

I'm still on 3 other anti-depressants, but have been on them for years without significant side effects.  (Wellbutrin, Lexapro, Effexor).  My plan is to get off the Effexor in the next few months.  Don't know when or if I'll get off the wellbutrin or Lexapro. 

 

Any info on TD cures, help, anything...would be so helpful to me.  I'm a mess, worried about my life with this disabling problem!  Help!!!

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WiggleIt

Jojool,

 

I am NO expert in this by any means, but I am suffering some of your same symptoms, and more.  You can read about it in my signature below.  I am two months off desipramine and Ativan.  My tardive dyskinesia symptoms were severe a few weeks ago, now they are sub-severe, so there has been a little improvement.  

 

Of the people that I have talked to who have had this problem clear up, they have told me that time and excellent nutrition are going to be my best bets.  While I do have some degree of involuntary movement every day still, there is less overall.  The jerks are just a bit smaller, just a little less often.  The jaw is not quite as clamped shut and is just slightly more mobile than it used to be.  My tongue is just a little less twitchy.

It's still no picnic, but the fact that I am a little bit better gives me hope that I will KEEP getting better.  Time, rest, and nutrition.  I do not want to try any other medication to "correct" the problem because it is crystal clear that meds caused the problem.  I'm not going to seek a solution in the very thing that made me sick in the first place.

Please don't lose hope.  I won't.  

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Jojool

Thank you Wiggleit.  I am praying that it gets better.  But....I need to get off of the Effexor next, and from what I've read, it can do the same thing, if not more.  And, the withdrawals from that are horrific too.  Why aren't the doctors TELLING people about these problems before the person takes the drug?  Isn't the Doctor's creed to "do no harm"???  At least let us be informed about the possible withdrawal aspects of these drugs so we can make an informed decision.  Maybe for some, the side effects are worth it.  I never asked to be put on these drugs, I just wanted help with my depression.  Drugs were the first choice for both my regular Dr and my Psych docs. 

 

I wish they had to endure even a day of what we have to go through. 

 

I hope you are well...and thank you for the encouragement.

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WiggleIt

I truly wish I could give you an answer as to why the docs don't warn us. Maybe they don't know. Maybe they only know what the drug companies tell them. Maybe the FDA info is inaccurate. Maybe it is a combination of all of those factors that lead to a perfect storm of keeping patients in the dark.

 

I work very hard on a daily basis not to get caught up in my anger at the doctors, because I believe that negativity will interfere with my recovery. Whenever I feel myself start to go into an internal tirade against my old doctors, I pray to God to lead me to the light. And it works. It's HARD, but it eventually works to get me into a more positive spiritual and mental place.

 

I am NOT trying to shove religion down your throat... Just letting you know what works for me. After half my life spent as an athiest, I've returned to God and I believe we can get through this together. My parents and God are my biggest comfort and help now.

 

I also meditate everyday. I visualize myself healed and breathe deeply while I do so. I believe it is helping. Again, it's hard, but we get good at the things we practice. If we practice painting, we get better at that... Same with music, or sports, or writing. So if we practice good thoughts, we can get better at staying in a good mental place. So that's what I'm really working on and it seems to be helping me. Yes, I have dips and roadblocks, but I gently urge myself to look for the light, and I ask God to help me get there.

 

Also, there are stories of complete recovery out there, including from tardive dyskinesia. The timeline is different for all of us, but from what I have seen and read and heard, it seems that those who are patient with themselves do all heal with time.

 

Like I said before, let's BOTH not give up!!

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WiggleIt

I truly wish I could give you an answer as to why the docs don't warn us. Maybe they don't know. Maybe they only know what the drug companies tell them. Maybe the FDA info is inaccurate. Maybe it is a combination of all of those factors that lead to a perfect storm of keeping patients in the dark.

 

I work very hard on a daily basis not to get caught up in my anger at the doctors, because I believe that negativity will interfere with my recovery. Whenever I feel myself start to go into an internal tirade against my old doctors, I pray to God to lead me to the light. And it works. It's HARD, but it eventually works to get me into a more positive spiritual and mental place.

 

I am NOT trying to shove religion down your throat... Just letting you know what works for me. After half my life spent as an athiest, I've returned to God and I believe we can get through this together. My parents and God are my biggest comfort and help now.

 

I also meditate everyday. I visualize myself healed and breathe deeply while I do so. I believe it is helping. Again, it's hard, but we get good at the things we practice. If we practice painting, we get better at that... Same with music, or sports, or writing. So if we practice good thoughts, we can get better at staying in a good mental place. So that's what I'm really working on and it seems to be helping me. Yes, I have dips and roadblocks, but I gently urge myself to look for the light, and I ask God to help me get there.

 

Also, there are stories of complete recovery out there, including from tardive dyskinesia. The timeline is different for all of us, but from what I have seen and read and heard, it seems that those who are patient with themselves do all heal with time.

 

Like I said before, let's BOTH not give up!!

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UnfoldingSky

 

Unfolding Sky, thank you for your good wishes.  

 
Unfortunately, my window closed a bit 2 days ago. And right now I'm feeling a lot of twitching again. This twitching is a little painful and seems to go together with very uncomfortable sensations in my head (pressure, pulling, burning feelings). The twitching is happening mostly in my arms, hands and back. It is really frustrating to be going through this again. 
 
Another symptom I'm having is some kind of uncomfortable feeling in my jaw which also causes a tremor on it. I read earlier today on one of your posts (I don't remember exactly where) that you used to have some problems with your jaw? I've had really bad jaw tremors since I had a bad reaction to prozac and now they come back whenever I have waves (This time it wasn't as severe as before). What were your jaw symptoms exactly? Do you think this might be TD? 

 

 

 

 

 

Hi Cdav, sorry to hear your window started to close, hope it managed to re-open a bit for the holidays.  It is good to hear though that you had some improvements in severity of symptoms in a wave, sounds like there is some healing happening even if things aren't great at the moment.

 

About the tremors, I couldn't say if that was TD or not, I am not sure if tremors are part of it.  Maybe Alto can answer that?

 

My jaw issue was a distinct movement, my jaw on rare occasion would move sideways.  I also had a painful feeling in my jaw, like it was tight, and I was worried about opening it too far as it felt like it would get stuck if I did.

 

I still could eat and everything, so it wasn't that bad, but it was a little worrying.  I did open it far sometimes too and it didn't get stuck.  Doctor had no idea what to tell me about it moving, though did say he thought my range of motion on one side was decreased. It hasn't moved since I had it looked at, which was a while ago, so this has improved.  

 

I am not sure if I would still have the decreased range of motion now either.

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UnfoldingSky

I have developed what I think is TD.  My tongue constantly moves, I twist my jaw and clamp down on my teeth.  I am ruining my bite, teeth are loose and moving!  I am so scared that this will be permanent.  I truly believe it is because of Abilify.  I was on Abilify for almost 2 years, tried to get off of it 4 times with horrific anxiety when tapering.  It was the worst anxiety of my life.  I never had any anxiety issues before taking Abilify. 

 

I finally tapered off and quit this devil's drug about 2 months ago.  It was difficult, but I was determined to get off of it.  About 2 weeks post quitting Abilify, I started developing these strange symptoms with my mouth.  It has gotten to the point where I find it difficult to talk! 

 

I'm still on 3 other anti-depressants, but have been on them for years without significant side effects.  (Wellbutrin, Lexapro, Effexor).  My plan is to get off the Effexor in the next few months.  Don't know when or if I'll get off the wellbutrin or Lexapro. 

 

Any info on TD cures, help, anything...would be so helpful to me.  I'm a mess, worried about my life with this disabling problem!  Help!!!

 

Hi Jojool and welcome to the site.  I am sorry for what you are going through.

 

I was concerned your post might be buried in this thread, so wanted to ask if you could put up a thread in the Intro section.  That way the mods can help you sort out what to do with regards to your situation.

 

Also if you could, please put up a drug history signature, it would be helpful to know how you tapered the Abilify.

 

And there are stories of people recovering from TD, even severe TD, it seems time is a big healer in this. Please don't lose heart. 

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ikam

What I hear there are a lot of symptoms that are threatening, but they heal with time...so there is hope for me as well...

I need to, learn to stop panicking, as this gets my symptoms worse. I run yesterday to emergency and just got another prescription.

I understand, the doctors are not taught about the consequences of new generation meds. But I still wish that I was at least told not to take any triptans...

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Blackstar

TCAs are still used, especially at in patient facilities and more severe cases of treatment resistant depression that haven't 'responded' to ssris and new atypicals. If that doesn't work they'll move to MAOIs (hypertensive crisis, anyone?), and finally ECT.

 

Our family doctor gave my mother good old amitriptyline for some intestinal pain she was having. It's supposed to relax muscles so I see his logic but once I told her it was a tca she said f this, and never took one. I don't blame her.

 

But back to the topic of TD, I started to show some signs while on zyprexa. I think that was actually the tipping point when I said that's enough.

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UnfoldingSky

Hi ikam, sorry no one answered you.  I hope you aren't having TD issues too?

 

 

Hi Blackstar, sorry to hear you were affected by Zyprexa too.  Did the TD issues go for you once you stopped the drug? 

 

It's awful that they give so many people drugs and/or ECT for "treatment-resistant depression".  I am convinced that is the new term for "we messed you up with SSRIs". 

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WiggleIt

TCAs have me messed up badly. Constant involuntary jerks and twitches and wiggling and flopping all over the place.

 

They were given to me for pain.

 

I fear I will never get better. My jerking is severe. My face scrunchy. I used to be so pretty.

 

TCAs are the devil. So glad your mom said no. So sad I thought my docs knew best.

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LAPeep

I guess it is good to hear others have had abnormal muscle movements, sad though it is, from antidepressants. My psychiatrist and her highly esteemed supervisor have said Sertraline could NOT cause the upper lip twitching or pursing I have, like the lip wants to pull upward, which incidentally gets less frequent when I lowered the dose but came back strongly when I had to go back up from 12.5 mg to 14 due to mood crashing....so I have developed the habit of pressing my lips together to stop the sensation.

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Blackstar

Sorry I haven't replied.. I didn't realize people had replied.  Yes the TD issues went away after I stopped zyprexa. 

 

I don't know.. ECT is weird in that they don't really know why or how it works.  I am convinced that part of the reason it is effective is that it erases some memory, so people who get the treatment may not remember how badly they felt before.

 

Yeah I can't picture my mom being able to take a tca very well, she tried zoloft once and quit after 3 days.  

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legan

Hey .

 

Sometimes after eating i lose my control of left hand for a while . It happened three times . Is this TD ?

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Prohealer

i have this now months into withdrawal. pretty fed up and hope it goes away.

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lanah

I have these weird sensations in my jaw, like suddenly the nerves contract, I am very scared. Is there a distinctive test to know wether you have TD or not? My psychiatrist told me a few months back it would probably just be withdrawal from my benzo. But it has gotten way worse right now so I'm in doubt. Should I trust the psychiatrist or are they guessing as much as I am?

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lanah

I have jerks all the time now :( i don't know how to handle them. I'm planning a microtaper from my antipsychotic, but it will still take me a year i think :( i'm so scared. 

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music321

Thanks.  I'm having issues with this right now.

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Evie

During my course of taking Cymbalta and Adderall for 8 yrs. I had developed the urge of making strange mouth movements for the last year or so.  No doctor had any idea what the cause was. It isn't a tic, just an urge to move my jaw and or lips!  I have managed to recently wean myself off of both drugs. It's been about 2 months now and I still have these symptoms. Has anyone else experienced this at all?


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gardenlady

I'm nearing the end of a benzo taper and am having episodes of tardive dyskinesia (TD) that started in 2014 when a psychiatrist poly drugged me with Seroquel and Trazadone because she was clueless that I was in benzo withdrawal for 2 mg clonazepan she prescribed for insomnia.  I rapid tapered of the clonazepam when I realized it was equivalent to 40 mg valium. The TD started when I took Trazadone & Seroquel during benzo withdrawal, although I was on them only for a few months.   I've had it episodically since then and would like to know if it's something that ever goes away.  Anxiety and extreme emotional distress triggers it and, of course, when we are in benzo and/or AD withdrawal, we are in a constant state of PTSD and so are prone to conditions like TD that are triggered by stress.  

 

It's a horrific condition and I'd like to know if there is a treatment for it.  And, I'd like to hear of others' experiences with it.  There was someone on this forum awhile back named Wiglet (I think)  who had a terrible time with it and it never did resolve, even years after being off of the offending meds.  Other than that, I can't find much about this condition on this forum.  I'd appreciate any help the moderators could provide.  Thanks!

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