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IWantToHeal

Dystonia / Dyskinesia

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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.

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Ryguy
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. 

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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. 

 

 

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Ryguy
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 

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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.

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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.

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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.

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UnfoldingSky

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

 

 

 

 

 

 

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Armorall

Yogagirl has a success story that covers dyskinesia. 

 

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Ryguy

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. 

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Ryguy
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

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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!

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Ryguy
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 

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Ryguy
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? 

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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. 

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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. 

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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.

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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.

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