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Tardive distonia


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I want to address the veterans of the forum, those who have been here for many years. There are several people on the forum who have developed tardive dystonia due to benzodiazepines and other psychotropic drugs. Were there cases when these people got better or did they get cured?
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It is probably not tardive dystonia of caused by withdrawal rather than the drug.

 

It is more likely hyperexcitability that over time will lessen.

 

How long have you been off?

 

It can take a few years but there are also ppl who have the muscle stuff badly and it goes very quickly.

 

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I'm so sorry for your suffering, truly I am  :'(

It is weird that it started 4 months into WD...

but I'm not surprised it happened after you took another drug.

Maybe it's because you were already in WD, and then the Lyrica was just too strong on your sensitive system.

 

I will tell you that my nerve and muscle stuff was bad at the beginning of WD...but I tried to take valium (in ER) at exactly 4 months off, same thing....made it the nerve and muscle stuff WAY worse! I didn't even think it could get worse, but it did. The nerve pain was completely unbearable and I could not function at all.

 

There is "emergent tardive dyskinesia" that happens after rapid WD or med change and it is reversible.

 

I know how awful you feel and that it feels utterly hopeless. There was no one in the real world to tell me that it would go away. And I don't know you so I can't tell you that I know for sure it will. BUT I CAN tell you that I got better! And I can tell you that no matter what DO NOT give up.

Just keep going :smitten:

My heart aches for you because I know that it is beyond unbearable.

Now that I am through the worst of it, I can honestly say that I cannot actually believe how much pain and torture the body can endure. It's astounding.

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Both tardive dystonia and tardive dyskinesia necessarily affect the muscles of the face.

Is this what happened to me..?? -(obviously for those that know of my “bells palsy type” diagnosis a couple of yrs ago..??

 

***

Sorry Arnold53, im not really confident to add much to this topic..

-Just to say I dont think much of lyrica either.. :( I first started getting my comparatively lesser nerve issues in my limbs after that one.. (Asides the existing RLS and a few bits n pieces).. It was fire compared to gabapentin for me, though its hard to be definitive mid multi tapers.. -I blame them all..!!

 

Sending strength..

 

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I've already read everything on this topic. Unfortunately, I haven't found a single person with symptoms of dystonia (and this is a spasm of the face, neck and lower back) who would get better over time, even after years.

Sounds terrible.. :( 

It counts me out of that one then, its only my face that has half a mind of its own, if anyones at home even, that is..

Ill have to look it up before I waste everyones time more.. :(

 

 

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I got dystonia in my neck during acute...but mine was from antipsychotics they had given me in the facility.

My neck was sooooooo stiff and sooooo painful that I could not turn it, could not tilt it, and could not lean back or lie back on it, or even touch it for that matter ....it lasted about 4 months.

I don't have it anymore.

But all the nerve stuff came from benzos I believe.

 

The dystonia came on immediately after taking large doses of haladohl and zyprexa (both antipsychotics), but it was not permanent!

 

Arnold- did doctors give you a true dystonia diagnosis?

I mean, it really does have certain symptoms that are unmistakable.

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Awww man, I'm so sorry for pain!

How does your neurologist want to treat it?!

 

Also, though your are correct about tardive dystonia usually being permanent, I'm pretty sure it's not ALWAYS permanent.

I'm so sorry for you. I could not lay on my neck for like 4 months, so I know how that is  :'(

 

If I were you, this is what I would do:

I would consult multiple neurologists, and I would try and see one that is a neuro-muscular specialist as well. (Sadly, they usually take a long time to get into). You have to find one that is the type that is willing to research and is not afraid of a challenge.

Did they even try an anticholinergic? Not that I am recommending it, but that is usually the first thing they try for dystonia.

Sending you hugs :smitten:

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Arnold, I know other ppl with this who are starting to find things easing off at about 3 years off.

 

Lexsant on here had it constantly to start with and now it comes and goes.

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I'm so sorry for your suffering, truly I am  :'(

It is weird that it started 4 months into WD...

but I'm not surprised it happened after you took another drug.

Maybe it's because you were already in WD, and then the Lyrica was just too strong on your sensitive system.

 

I will tell you that my nerve and muscle stuff was bad at the beginning of WD...but I tried to take valium (in ER) at exactly 4 months off, same thing....made it the nerve and muscle stuff WAY worse! I didn't even think it could get worse, but it did. The nerve pain was completely unbearable and I could not function at all.

 

There is "emergent tardive dyskinesia" that happens after rapid WD or med change and it is reversible.

 

I know how awful you feel and that it feels utterly hopeless. There was no one in the real world to tell me that it would go away. And I don't know you so I can't tell you that I know for sure it will. BUT I CAN tell you that I got better! And I can tell you that no matter what DO NOT give up.

Just keep going :smitten:

My heart aches for you because I know that it is beyond unbearable.

Now that I am through the worst of it, I can honestly say that I cannot actually believe how much pain and torture the body can endure. It's astounding.

 

 

We’re you muscles so tight and contracted they bent spine into horrific contorted posture because so shortened it can’t  to full length?

Neck so tight at back that can’t retract chin and jaw joints so tight snaps shut if open jaw (teeth are nit clenched or touching).

Buttocks and shoulders and upper back etc like hard, fibrotic rubber?

 

 

MRI shows worsening degeneration in spine and jaw joints since this started.

 

When take current dose everything collapses - arches in feet, neck etc just collapses like no muscle tone but it is all still gripping on to hard to bones - like gristle at attachments - at all but without it everything is literally like hard rubber - like the texture of muscles has gone very wrong at a cellular level.

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I've already read everything on this topic. Unfortunately, I haven't found a single person with symptoms of dystonia (and this is a spasm of the face, neck and lower back) who would get better over time, even after years.

 

Dolphinator78 is considerably better I believe.

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Thanks to everyone who writes and supports me. According to my feelings, this is forever, especially since it has no windows even for a few seconds. It is continuous. And the more time passes, the more changes in the nerves and muscles. I see no reason to go to neurologists. They already prescribed me pregabalin, which killed me.
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I've already read everything on this topic. Unfortunately, I haven't found a single person with symptoms of dystonia (and this is a spasm of the face, neck and lower back) who would get better over time, even after years.

 

Dolphinator78 is considerably better I believe.

He had spasticity in the limbs, but not in the neck and face, which is somewhat different.

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Arnold - BTE were you ever on SSRIs or anti-nausea meds? I am aware of ppl who developed tardive dystonia from both of those classes of drugs.

I took SSRI very little a year ago. Maybe 2 weeks. Then I could not understand why I feel bad. Didn't know it was from benzo.

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Ajusta, Only the muscles of the neck and lower back on the right are tense. They are drawn to each other. The muscles of the neck are held together like cement. Pulls the face in different directions. It just rips apart. Pulls down by the ears, under the nose. This is something unimaginable that no one person will understand. I think the muscles are fibrosing from the continuous spasm and will never be the same. This is an irreversible process.
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I've already read everything on this topic. Unfortunately, I haven't found a single person with symptoms of dystonia (and this is a spasm of the face, neck and lower back) who would get better over time, even after years.

 

Dolphinator78 is considerably better I believe.

He had spasticity in the limbs, but not in the neck and face, which is somewhat different.

 

Told me had every muscle in body contracted.

 

I hope ppl are completely honest on here because of they aren’t they can cause ppl very real harm if they try to reassure ppl who have much more severe and serious symptoms going on that should have been treated urgently.

 

 

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I've already read everything on this topic. Unfortunately, I haven't found a single person with symptoms of dystonia (and this is a spasm of the face, neck and lower back) who would get better over time, even after years.

 

Dolphinator78 is considerably better I believe.

He had spasticity in the limbs, but not in the neck and face, which is somewhat different.

 

Told me had every muscle in body contracted.

 

I hope ppl are completely honest on here because of they aren’t they can cause ppl very real harm if they try to reassure ppl who have much more severe and serious symptoms going on that should have been treated urgently.

 

He did not write anything behind the neck and face. I read his story.

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Ajusta, Only the muscles of the neck and lower back on the right are tense. They are drawn to each other. The muscles of the neck are held together like cement. Pulls the face in different directions. It just rips apart. Pulls down by the ears, under the nose. This is something unimaginable that no one person will understand. I think the muscles are fibrosing from the continuous spasm and will never be the same. This is an irreversible process.

 

 

That is exactly what In have but with whole back, neck, buttocks, abs, face, head.

 

And yes, like extreme fibrosis - like all muscles turning to gristle.

 

Frequency Specific Microcurrent might help it but is very hard to find someone who can do it and you have to train to be able to buy a machine which are very expensive.

 

 

I am trying to find someone who can help me access it but no luck so far.

 

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I've already read everything on this topic. Unfortunately, I haven't found a single person with symptoms of dystonia (and this is a spasm of the face, neck and lower back) who would get better over time, even after years.

 

Dolphinator78 is considerably better I believe.

He had spasticity in the limbs, but not in the neck and face, which is somewhat different.

 

Told me had every muscle in body contracted.

 

I hope ppl are completely honest on here because of they aren’t they can cause ppl very real harm if they try to reassure ppl who have much more severe and serious symptoms going on that should have been treated urgently.

 

He did not write anything behind the neck and face. I read his story.

 

I messaged with them. Said all muscles contracted but took Flexeril for it.

After 18 months the muscles all just let go over a few days.

 

But I agree if have fibrosis may not be resolvable.

 

I am not able to take any meds now as have horrible reaction to everything but maybe something like Dantrolene could help you?

 

Or you could have a dopamine related dystonia that might respond to LevoDopa.

 

Have you also had extreme and sudden muscle wasting?

 

Also, before all of this were you hypermobile at all? Is your skin stretchy etc?

 

Some ppl with Ehlers Danlos get dystonia that responds to levodopa/carbidopa and I think WD can make such diseases 100 times worse.

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My problem is that no position I can get in that is bearable as dose gets lower so nowhere to go to wait it out In hope things ease.

 

That is why tried every possible med and reinstated twice.

 

There are several ppl on FB with this stuff from WD.

 

I can talk about it in more detail on there because apparently my symptoms are too triggering for ppl on here so I am not allowed to write about them anymore even though you are describing the same things and that is, apparently, not a problem.

 

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I do not even know how muscles can relax, which over a long time have turned into tight stretched ropes, especially in three days. It sounds like fantasy. The muscles undergo major changes and scar tissue appears.
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I feel exactly the same and see no way out but other ppl tell me it has happened to them.

 

Do you have big lumps of gristle in abdominal wall? Like hard lumps of rock that feel sharp?

 

 

My main concern is the areas of spine where vertebrae have been forced into wring position and can’t release. They were stuck before Benzos s after spinal surgery - after surgery there was big clunk in middle of spine and whole upper back, neck, shoulders, head went rigid.

That is why was in Benzos. None of it every resolved but the Bezos made it bearable to lie down with legs up but not been able to sit or stand long since 2001.

 

I have a lot of spinal degeneration.

 

You are most likely going to be ok.

 

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I have observed prolonged spasticity after strokes, and this is also brain damage, and I do not know of a single case where it went away. There may be little progress in the first few months only. And my acquaintances neurologists, too, say that spasticity, all involving brain damage, is constant.
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I have no lumps of cartilage. On my stomach and lower back, I feel spasmodic muscles, on which nerves are constantly beating ... it is very painful, even bakes, as if the strings were being pulled.

 

We have taken different drugs in different doses and the symptoms will vary.

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