[Lauru]

I have this jerking and weird shaking of my legs. My pdoc thinks it might be tardive dyskinesia starting. I would rather be dead than have that, it scares the hell out of me. I told him that. He is now weaning me off Remeron and abilify. Abilify may be the culprit he thinks. The Remeron taking me off and lowering Seroquel so I am not so sleepy mornings. Lowering Lithium due to hand tremors

Basically, I'm scared shitless that I will get sick again, and end up in the hospital or lose my job. or worse. But I can't get that illness, tardive dyskinesia. My life would end, I wouldn't be able to work, and everyone who saw me would know there is something wrong with me.

I am just wondering if anyone has had tardive dyskinesia and what happened. And has anyone come off of abilify? How was it?

[Travelinglady]

I did start to have mouth twitching, etc. Not the full-blown thing, but enough that my pdoc started to worry and took me off stuff.

Abilify can definitely be a culprit. I think somebody at PC developed TD after being on it. I was on it for just a bit, and I don't recall any issues with going off.

I seem to think that Seroquel is an anti-psychotic and thus potentially a cause of TD, too, but I wouldn't swear in court without more checking....

[Travelinglady]

I checked. Yes, Seoquel can cause TD.

Remeron is an anti-depressant, so you're safe there, I think.

I do NOT like Abilify!

[sunrise]

I think both Seroquel and Abilify carry a risk for TD. The risk is low compared to some other antipsychotics, but it sounds like you may be one of the unlucky ones to have that response to one of these meds. Hope you can figure out which med it is so you can get the problem to stop. It's really good that you have caught this early. Good luck.

[crab76]

I'm trying to come off Abilify right now. It's hard because my symptoms keep coming back. I was only on 2.5mg. Went down to 2, then 1mg. But my mood crashed big time when I went to 1mg. So now I'm at 2 again.

So my advice is to go slow. Is your Dr going to put u on something to replace it? U may be ok if you do that. I didn't.

I got a twitch in my face and it scared me so bad. I know it's the abilify. But the twitch hasn't gotten any worse. Thank goodness. Abilify also makes me gain weight so I gotta get off.

I've had some leg twitching and hand spasms, mainly my thumb will jerk and I will drop whatever I'm holding. I told my pdoc and he wasn't interested. Now I've been off all meds for several months now and it's still there I guess it was due to something else.

I stopped both Abilify 10mg and Escitalopram 10mg cold turkey at the same time and it wasn't too bad. Obviously I wouldn't recommend just stopping your meds, especially without pdoc approval, but I did it and it was bearable. Nowhere near as bad as some of the other stuff I've come off of over the years! I just felt 'not right' but it was very non-specific and definitely nothing that interfered with day-to-day activities or anything.

Anyway, I wish you good luck Lauru

*Willow*

[greylove]

I was on Abilify briefly and developed the classic symptoms of TD. The leg twitching, the movement of the indez finger of the right hand (described as "playing the piano") and the tongue and jaw motion. It's rare. My pdoc had never seen it and I had to diagnose myself. I fit all the risk factors. I didn't notice any special effects coming off of Abilify. I was put on Seroquel and I take Lamictal. The hand and motion disappeared. The tongue and jaw movements are still there. Not terribly visible to anyone else......but intensely bothersome to me.

yup. abilify.
arms that had lives of their own...really...they would twitch and flail..first slightly & then it got worse...i had difficulty swallowing..

scared the crap out of me...i fought to get off of it. i was so very overmedicated at that point. it took a while but they went away...

at first they gave me meds to combat the side effects..i was like "no more drugs to cover the other drugs."

everything stopped (well at least those side effects) when the ability was stopped.

hate it. will NEVER take it again. EVER

[Lauru]

Originally Posted by WeepingWillow23

I've had some leg twitching and hand spasms, mainly my thumb will jerk and I will drop whatever I'm holding. I told my pdoc and he wasn't interested. Now I've been off all meds for several months now and it's still there I guess it was due to something else.

I stopped both Abilify 10mg and Escitalopram 10mg cold turkey at the same time and it wasn't too bad. Obviously I wouldn't recommend just stopping your meds, especially without pdoc approval, but I did it and it was bearable. Nowhere near as bad as some of the other stuff I've come off of over the years! I just felt 'not right' but it was very non-specific and definitely nothing that interfered with day-to-day activities or anything.

Anyway, I wish you good luck Lauru

*Willow*

I was told by my pdoc that once you get TD symptoms, after stopping the med altogether, you have to wait 6-12 months before the TD will get better, if it ever gets better. For some people it doesn't.

[Lauru]

Thanks all for your responses. I am so terrified right now. I can't get anything visible to others, I wouldn't be able to work and i wouldn't feel like having a social life because others could see. I am so scared, so scared

mine went away much quicker than that...so take what they said with a grain of salt...sometimes the dr's go with the worst case scenario just to cover their butts. & mine went totally away.

[kaliope]

I got TD from haldol. tongue and jaw movement. it was very obvious. my boss even called me in to question me stating it appeared i was on meth. the haldol worked so great i didnt want to get off it so i took the extra meds to counteract the TD. I took Artane in the morning, and since that wired me, I took benedryl at night. I just went off the haldol about a month ago. i had read that TD stays around awhile after you get off the med as well so i mentioned that concern to pdoc. he seemed sorta clueless about it so told me to stay on the artane for another week. well i had over a months worth of it left so im taking it until its gone. i have cut the benedryl out and so far no signs of td. hope it stays that way when i run out of artane.

[Lauru]

I am really obsessively worried about this. I am starting to feel sui* I am safe and am not doing anything, but my thoughts are going there. I wish someone could help me.

Originally Posted by Lauru

I am really obsessively worried about this. I am starting to feel sui* I am safe and am not doing anything, but my thoughts are going there. I wish someone could help me.

I understand that you are scared Lauru, but you are focussing on worst-case-scenario here and that's what is freaking you out. In your opening post, you said you had jerking and shaking of your legs - has anyone else noticed it and commented on it?

I doubt I had/have TD, but no-one ever noticed my legs twitching or my thumb jerking, though they did notice me drop/spill things from time to time. I told my family what it was and now we joke about my dodgy thumbs! Everyone else just thought I was a tad clumsy, not that there was anything 'wrong' with me, or that I was 'crazy' or anything. The average person has no idea what TD is and would not attribute a bit of shaking or twitching to anti-psychotic use. I can understand if you had very obvious facial movements, but most other things can be brushed off if people notice. Like sometimes people twitch with a cold shiver (here we have the expression that someone walked over your grave, don't know if you have that in the States?). When I had to move my legs because the twitching (not noticeable to anyone else) was driving me nuts, I just said that my legs had gone to sleep - no big deal.

I know you are scared Lauru, but you have to distract yourself from going to that scary place. The likelihood is that the symptoms you are currently experiencing WILL GO AWAY COMPLETELY. Keep that in mind and tell yourself it over and over when you feel yourself starting to freak out again. You will be okay Lauru

Take care,

*Willow*

[Lauru]

Originally Posted by WeepingWillow23

I understand that you are scared Lauru, but you are focussing on worst-case-scenario here and that's what is freaking you out. In your opening post, you said you had jerking and shaking of your legs - has anyone else noticed it and commented on it?

I doubt I had/have TD, but no-one ever noticed my legs twitching or my thumb jerking, though they did notice me drop/spill things from time to time. I told my family what it was and now we joke about my dodgy thumbs! Everyone else just thought I was a tad clumsy, not that there was anything 'wrong' with me, or that I was 'crazy' or anything. The average person has no idea what TD is and would not attribute a bit of shaking or twitching to anti-psychotic use. I can understand if you had very obvious facial movements, but most other things can be brushed off if people notice. Like sometimes people twitch with a cold shiver (here we have the expression that someone walked over your grave, don't know if you have that in the States?). When I had to move my legs because the twitching (not noticeable to anyone else) was driving me nuts, I just said that my legs had gone to sleep - no big deal.

I know you are scared Lauru, but you have to distract yourself from going to that scary place. The likelihood is that the symptoms you are currently experiencing WILL GO AWAY COMPLETELY. Keep that in mind and tell yourself it over and over when you feel yourself starting to freak out again. You will be okay Lauru

Take care,

*Willow*

thanks Willow. My legs are very noticeable to others, sometimes the whole couch shakes when I am sitting on it at night from my leg jerking and shaking hard. It really scared my SO, she wanted to know what was wrong. She was very concerned. The twitching in my face she hasn't really noticed yet, but now my eyelid is twitching uncontrollably. I don't know what to make of this, I really don't. I just know I want it to stop. I can't be handicapped by this. I have come too far and gotten so much better, for this to happen to me. It would erase all of my hard work. God this just sucks royally!! I wish I didn't have to put up with all this **** all the time. I'm sick of it.

[Moose72]

Hey stranger! I was on abilify and got TD and it went away when I stopped the meds.