Tardive dyskinesia, dyskinesia, dystonia, extrapyramidal, or involuntary movements

[Altostrata]

People love those weighted blankets, they've become quite the thing.

 

On 2/14/2019 at 6:48 AM, Wellbutrinsucks said:

This is so distressing; twitching doesn’t seem to last this long in most people. 

 

I have no idea how you can make that generalization. Having no grounds for it,  you might look into whether having this symptom, or any symptom, matches a belief about yourself, e.g. that you are irredeemably flawed. If so, I strongly suggest you seek psychotherapy for this, getting it cleared out and re-writing your script will make your whole life so much better, not to mention this difficult period while you're waiting for recovery.

 

Wellbutrinsucks, please put further musings about your symptoms and updates in your Introductions topic.

[IWantToHeal]

Anyone have dystonia or dyskinesia and has recovered from it?

Or anyone have any stories they would like to share about their dystonia / dyskinesia?

 

Mine is lip smacking, lip licking, eye widening, eyebrow raising, neck twisting to the right and back. Carpal tunnel in the wrist and weird finger movements as if playing a guitar. It started while I was on Sertraline, I didn't think much of it as I was so drug drunk. It hasn't stopped 5 months after taking it. I'm a bit worried to say the least.

[Guest]

On 1/29/2020 at 5:16 AM, IWantToHeal said:

Anyone have dystonia or dyskinesia and has recovered from it?

Or anyone have any stories they would like to share about their dystonia / dyskinesia?

 

Mine is lip smacking, lip licking, eye widening, eyebrow raising, neck twisting to the right and back. Carpal tunnel in the wrist and weird finger movements as if playing a guitar. It started while I was on Sertraline, I didn't think much of it as I was so drug drunk. It hasn't stopped 5 months after taking it. I'm a bit worried to say the least.

I have major dyskinesia . Blinking, bruxism, rolling eyes, moving eyebrows, moving head. I look psychotic 24/7 . I also get head pressure and electric jolts and i scrunch my face and nose a lot. My teeth have worn down from the grinding too. 

[IWantToHeal]

@RyguyIt’s a tragedy that people like yourself have been affected this badly from a supposedly “safe” drug. Yours sounds a bit worse than mine is currently. Did it improve with time at all?
 

Has anyone actually recovered from this? I can’t find a single story online where someone’s made a full recovery from the drug induced dystonia. The literature on Google seems to say that this issue is permanent.

 

I am holding out hope that I will heal from this, it’s better for my sanity that way. But it’s actually quite painful, my jaw is so tense and locked all the time and my eyes are watery and sensitive to light. That’s not even to mention the self consciousness factor and how it affects self esteem. 

 

 

[Guest]

7 hours ago, IWantToHeal said:

@RyguyIt’s a tragedy that people like yourself have been affected this badly from a supposedly “safe” drug. Yours sounds a bit worse than mine is currently. Did it improve with time at all?
 

Has anyone actually recovered from this? I can’t find a single story online where someone’s made a full recovery from the drug induced dystonia. The literature on Google seems to say that this issue is permanent.

 

I am holding out hope that I will heal from this, it’s better for my sanity that way. But it’s actually quite painful, my jaw is so tense and locked all the time and my eyes are watery and sensitive to light. That’s not even to mention the self consciousness factor and how it affects self esteem. 

 

 

I didnt have it for the first few years of my withdrawal it kicked in year 3 and im on my 7th year. Havent worked for years. Ive never read its permanent, but withdrawal can apparently last for a decade in some people . Ive never read anything being permanent to be honest, i dont want to even think in that direction, not healthy for my spirit. I have hope. The dyskensia is not even my issue really, these drugs caused permanent scarring on my skin, thats what really gets to me. But hey im still alive and ive watched my cousin and three friends commit suicide in withdrawal, so i keep battling it, wont stop until i win 

[direstraits]

Hi Ryguy,

don't see many on here in long term protracted WD.

I've been off for over 5 years and still have some pretty awful days.

you're a lot younger than me so that;s in your favor.

sorry to hear about your cousin and friends...so sad.

hang in there...we'll get there one day.

[icequeen]

I still have horrible dystonia in my whole body. My entire back is locked up in a permanent spasm that never eases up and my face is rigid and mask like. Locked jaw, stiff tongue etc etc. The uppger body spasm makes it very hard to breathe so I spend most of my time in bed reading. I have been off Zoloft for 16 years now. No improvement.

[RedRobin123]

I have been off Abilify for almost 3 years and I have tartive diskinasia and strange burping in my throat. It feels like air bubbles that burst out. I have 20 to 25 in a minute. I have no social life at all. I have been to every kind of specialist that there is. No one seems to be able to help. Anyone out there that has had this problem and found help please post.

[UnfoldingSky]

I had a mild case of tardive dyskinesia and I recovered. 

 

 

 

 

 

 

[Armorall]

Yogagirl has a success story that covers dyskinesia. 

 

[Guest]

thanks all for the replies. ice queen seems to be dealing with permanent problems. i hope to God that resolves itself eventually and that it doesn't happen to me, I'm on my 7th year of withdrawal so im not sure at this point. hope everyone gets better. i cant believe this has become my life to be honest....still hasn't processed yet. 

[Guest]

On 2/6/2020 at 12:32 PM, icequeen said:

I still have horrible dystonia in my whole body. My entire back is locked up in a permanent spasm that never eases up and my face is rigid and mask like. Locked jaw, stiff tongue etc etc. The uppger body spasm makes it very hard to breathe so I spend most of my time in bed reading. I have been off Zoloft for 16 years now. No improvement.

16 years with no improvement? is dyskinesia your only symptoms or are there others? this is absolutely terrifying....do you work? what have you tried to do to cure it in terms of seeing specialists.....man i hope big pharma pays for what they've done in the next life

[icequeen]

Ryguy, I have seen three neurologists who could do nothing. They could see that I have hyperreflexia and spastc muscles but as soon as doctors suspect drug damage they want nothing to do with it. I have been given hearing aids for the hearing loss caused by the withdrawal tinnitus that I still have. And no, I don’t work. I am so dizzy, weak and short of breath that I’m lucky if I make it to the supermarket one block from here. The spasms and dizziness gets worse with every step. I’m in a lot of pain and am very traumatized. I still see the GP now and then to get inhalers so I get some air. Tried to reinstate a couple of times with unacceptable reactions. Thanks for asking and caring about me!

[Guest]

15 hours ago, icequeen said:

Ryguy, I have seen three neurologists who could do nothing. They could see that I have hyperreflexia and spastc muscles but as soon as doctors suspect drug damage they want nothing to do with it. I have been given hearing aids for the hearing loss caused by the withdrawal tinnitus that I still have. And no, I don’t work. I am so dizzy, weak and short of breath that I’m lucky if I make it to the supermarket one block from here. The spasms and dizziness gets worse with every step. I’m in a lot of pain and am very traumatized. I still see the GP now and then to get inhalers so I get some air. Tried to reinstate a couple of times with unacceptable reactions. Thanks for asking and caring about me!

Whats scaring Me is im realizing a lot of people have permanent issues...i thought the website was supposed to bring hope that this will pass ...even if it takes years....man i feel lost now 

[Guest]

1 hour ago, Ryguy said:

Whats scaring Me is im realizing a lot of people have permanent issues...i thought the website was supposed to bring hope that this will pass ...even if it takes years....man i feel lost now 

Im sorry to hear whats happened to you. It sounds tragic. However i have hope progress may even come in your case, but may take longer than others. Theres no guessing with these things. What things do you look forward to? What helps you cope? 

[icequeen]

Ryguy, coping is very hard. The dystonia is of course very disabling but there is another problem that is even worse. I stop breathing all the time. It is as if the drive to breathe just isn’t there. It drives me insane.  To answer your question I don’t look forward to anything - I just try to get through the next hour. I try to remember days when things were even worse  and my limbs were waving uncontrollably and I couldn’t get as much as one hour of sleep per night. I have no hope of full recovery, I am too old to heal this kind of severe damage. I just hope I can keep holding on to my mental sanity. 

[jadealexro]

Anyone get diagnosed with tardive dystonia after stopping an anti-depressant? I took Paxil for years. A week after I went completely off it, my head started tremoring. That has continued for 8 years. I finally saw a neurologist last year, who diagnosed me with Cervical Dystonia. It seems timing wise that Paxil, or going off it, caused the dystonia. 

[jadealexro]

I have had tremors for about 9 years now, and they have not gone away. Botox helps for about 6 weeks, and then they return when it starts to wear off. I am trying lots of natural remedies, which I believe if done persistently will lessen the tremors. They have not always been as dramatic. However, I am considering medication as well.

[gdsequoia]

Things that have helped me significantly in the battle with dystonia:
- I quit coffee. Even decaf. Also, reduced all kinds of sugar super much. Including honey, chocolate, fruits.
- I switched my neuroleptic from amisulpride to aripiprazole. The other option my doc offered me was to switch it to quetiapine.
- Sad as that might be, I quit my job

 

Hope this helps.

[Aember]

On 2/9/2020 at 4:41 PM, RedRobin123 said:

I have been off Abilify for almost 3 years and I have tartive diskinasia and strange burping in my throat. It feels like air bubbles that burst out. I have 20 to 25 in a minute. I have no social life at all. I have been to every kind of specialist that there is. No one seems to be able to help. Anyone out there that has had this problem and found help please post.

I have this problem! It's your esophagus spasming. Mine was initiated by a massive dose of Zoloft and 5mg olanzapine. I took Vitamin C, D and Lion's Mane Mushroom. Work on distracting your brain when it happens. Look up neuroplasticity by Norman Doidge. Keep training your brain.

[ChessieCat]

@Aember

 

3 minutes ago, Aember said:

Best advice is to take Vitamin C, D and Lion's Mane Mushroom.

 

Please do not make recommendations.  It is okay to say what you took but not to advice others to take them.  What worked for you might make somebody else worse.

[ChessieCat]

Aember, thank you for editing your post to state what you took instead of suggesting others take the same thing.

[RedRobin123]

On 5/22/2020 at 3:16 PM, jadealexro said:

I have had tremors for about 9 years now, and they have not gone away. Botox helps for about 6 weeks, and then they return when it starts to wear off. I am trying lots of natural remedies, which I believe if done persistently will lessen the tremors. They have not always been as dramatic. However, I am considering medication as well.

They have medication to help with Tardive Dyskinesia but they are so expensive that the average person cannot afford them even with insurance. I would have to pay 900. a month. I cannot get any assistance because my insurance is a government plan. I think that the makers of these antipsychotic drugs should be held responsible for the damage they have done to so many. 

[RedRobin123]

15 hours ago, Aember said:

I have this problem! It's your esophagus spasming. Mine was initiated by a massive dose of Zoloft and 5mg olanzapine. I took Vitamin C, D and Lion's Mane Mushroom. Work on distracting your brain when it happens. Look up neuroplasticity by Norman Doidge. Keep training your brain.

Thank you for your response. I was beginning to think that I was the only one with this problem. It is terrible. I hope that you improve and I will look up Norman Doidge

[Kelmo137]

On 2/6/2013 at 1:35 PM, Altostrata said:

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

 

i have this condition from a advsre reation to my geodon. my doctor is incredibly incompitent. these symptoms started around 8 years ago including dystonia. and his only solution was more drugs. they did nothing. he wasnt very interested in hearing my complaints. the research says if this side affect occurs stopping the med is needed asap. im on an old med from the 50s and the lists of side effects are long and very dangerous. my doctor was supposed to monitor me and check my blood and liver enzymes every year and he never once said anything. the three times i tapered before with no success these TD symptoms went away immediatley. hoping the same happens when im ready to taper again.  

[Kelmo137]

On 11/27/2014 at 11:37 AM, Dracony said:

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..... 

people often laugh at me bc my whole facial features tick. people dont know i actually have drug damage but i still find it rude to to make fun of me. plus it causes so much pain in my neck.it comes and goes. ill get flares that last a week. im getting reading to taper once i read every piece of info i can and it should go away

[Kelmo137]

On 2/4/2020 at 4:05 AM, Ryguy said:

I have major dyskinesia . Blinking

On 1/29/2020 at 8:16 AM, IWantToHeal said:

Anyone have dystonia or dyskinesia and has recovered from it?

Or anyone have any stories they would like to share about their dystonia / dyskinesia?

 

Mine is lip smacking, lip licking, eye widening, eyebrow raising, neck twisting to the right and back. Carpal tunnel in the wrist and weird finger movements as if playing a guitar. It started while I was on Sertraline, I didn't think much of it as I was so drug drunk. It hasn't stopped 5 months after taking it. I'm a bit worried to say the least.

, bruxism, rolling eyes, moving eyebrows, moving head. I look psychotic 24/7 . I also get head pressure and electric jolts and i scrunch my face and nose a lot. My teeth have worn down from the grinding too. 

i have the same thing from geodon. it started a few years after i started this med. i call them ticks. it took me years to realize what it was. my doctor had no concern except to write me more meds to stop the ticks. i was naive and took them but no surprise it did nothing. then i began to have excruciating neck pain out of nowhere. i couldnt even explain the pain bc when doctors gave me a list on types of pain it wasnt any of them. now i realizes it feels sore times 1000. i get flares that last a few days to a week where im bed ridden and so depressed because i saw multiple doctors in 5 years and sought help all over and none of them could be bothered to figure it out. i was never examined. they said my MRI showed nothing so to them that meant i was crazy and or a drug seeker. it was a double whammy of disabling pain and inhumane treatment by the doctors. i did find out that my MRI did show bone spurs and wasnt curved with some arthritis .im still not 100 percent sure whats wrong with me. i have no idea if dystonia can be tested if the cause is from side effects of meds. i took the natural route and take kratom for the pain and my pain is gone but the ticks and jerks are still there. now that i know whats wrong with me no thanks to medicine i refuse to go back to doctors bc now i have anxiety issues around them for the abuse they did to me. im still not at the point where im ready to start weening of this posion. thats a step too big and scary to deal with now

 

[Guest]

Dyskinesia

 

What exactly is the difference between dyskinesia and severe compulsions..im 10 years out and my tardive dyskinesia/compulsions are worse then ever...

 

Edited November 4, 2020 by Guest
added topic title

[ChessieCat]

Similar topic merged and topic amended to reflect merged topics

[ChessieCat]

2 hours ago, Ryguy said:

severe compulsions

 

Please describe what you mean by this.

[ChessieCat]

https://www.medicalnewstoday.com/articles/319744

 

Dyskinesia is defined as abnormal, uncontrollable, involuntary movements. There are many different types of dyskinesia with symptoms that range from minor tics to full-body movements.

 

https://www.medicalnewstoday.com/articles/320175

 

Tardive dyskinesia is a side effect of certain medications that causes unintended muscle movements, usually in the face. These movements are jerky, stiff, and cannot be controlled.

 

https://www.medicalnewstoday.com/articles/171354

 

Dystonia is a range of movement disorders that involve involuntary movements and extended muscle contractions. There may be twisting body movements, tremor, and unusual or awkward postures.

[Guest]

13 minutes ago, ChessieCat said:

 

Please describe what you mean by this.

Cosntant blinking and sniffling facial tics etc...its like severe stresss that makes me have compulsions, almost tourettes like, never had until past few years 

[ChessieCat]

If you look at the information I posted you will see that all of them state involuntary.  Blinking and sniffling might be habits and not necessarily involuntary, or possibly stress induced or due to an allergy.  Tics may be stress induced. 

 

I've just listened to the audio book Carrying the Fire by Michael Collins about the Apollo 11 moon landing.  He stated that at some point he had tics in both eyes but after they successfully completed whatever task it was they were doing the tics disappeared.

 

When I was growing up I would always sniff badly the day after going swimming in chlorinated pool water.

[DaBro]

On 2/10/2020 at 1:54 AM, UnfoldingSky said:

I had a mild case of tardive dyskinesia and I recovered. 

 

 

 

 

 

 

I’m 26 months out and developed TD 4 months ago. It tends to be minor lasting 5-15 minutes and either happens last thing at night or first thing in the morning. I’m hoping it will pass, especially as it feels like the latest in a long line of symptoms. 

 

How did it come and go for you?

[Jay78]

After tapering from 400mg to 100mg of seroquel I have developed jerky movements of the legs, nothing too pronounced and they last for about half an hour. 

[Altostrata]

WiggleIt recovered from dystonia.