WiggleIt: Tardive dyskinesia & dystonia from TCAs/nortriptyline/desipramine; rapid taper & benzo trouble, too

[bluebalu86]

WiggleIt

 

You don't know that. Like you said, TD induced from TCA and benzo is a rare condition. You don't know what will happen, and besides you are a unique individual with a unique body chemistry. You don't know if you won't recover. It's not a fact. Try to make the best out of your life as it is right now, but don't abandon hope. 7 months is early on, you don't know what will happen in a year. 

[Pugknows]

Hey ((((WiggleIt)))). I know you're down in the dumps. We're both the same time off. It's really tough to endure this amount of suffering for this many months and keep hope alive. Believe me. I get it. I'm here for you.

 

I'm grateful my anal spasms have temporarily moved to my bellybutton. Still painful, but can't fart out the spasm. TMI, I know, but thought I'd give you hope that some symptoms can change, maybe not in nature, but in location. Is this an example of my brain trying to fix something?

 

Your dystonia is not permanent. It will go away in time. Maybe it will move to a new location. Like France.

[WiggleIt]

WiggleIt

 

You don't know that. Like you said, TD induced from TCA and benzo is a rare condition. You don't know what will happen, and besides you are a unique individual with a unique body chemistry. You don't know if you won't recover. It's not a fact. Try to make the best out of your life as it is right now, but don't abandon hope. 7 months is early on, you don't know what will happen in a year. 

Thank you, Blue.  I feel so guilty when you read my thread because you are still new and I don't mean to scare you.

[WiggleIt]

Hey ((((WiggleIt)))). I know you're down in the dumps. We're both the same time off. It's really tough to endure this amount of suffering for this many months and keep hope alive. Believe me. I get it. I'm here for you.

 

I'm grateful my anal spasms have temporarily moved to my bellybutton. Still painful, but can't fart out the spasm. TMI, I know, but thought I'd give you hope that some symptoms can change, maybe not in nature, but in location. Is this an example of my brain trying to fix something?

 

Your dystonia is not permanent. It will go away in time. Maybe it will move to a new location. Like France.

OMG, I get anal spasms, too!  And butthole zaps.

[Pugknows]

Aren't we the life of the party? Put lampshades on our heads and they'd call us the entertainment.

[WiggleIt]

Facial scrunches have returned. Lips twitch. Eyes close involuntarily.

 

Huge body jerks waking me from sleep. Brain keeps clicking itself awake from sleep.

[WiggleIt]

PLEASE, please. Please...

 

Has anybody recovered from dystonia?

 

Has anybody recovered from facial tics?

 

Please help me, somebody. Please. I can't live with this dystonia and or the facial tics.

 

I've seen ONE recovery about facial tics and that person tapered slowly and I didn't and I have lost hope.

 

I've seen ZERO recoveries about dystonia.

[bluebalu86]

 

WiggleIt

 

You don't know that. Like you said, TD induced from TCA and benzo is a rare condition. You don't know what will happen, and besides you are a unique individual with a unique body chemistry. You don't know if you won't recover. It's not a fact. Try to make the best out of your life as it is right now, but don't abandon hope. 7 months is early on, you don't know what will happen in a year. 

Thank you, Blue.  I feel so guilty when you read my thread because you are still new and I don't mean to scare you.

 

 

There's nothing to feel guilty about WiggleIt. We deal with what we're facing. I think my withdrawal will be very similar to yours because it seems that muscle twitches and tics are my primary symptom too. But I also get psychological torment along with the tics. Each time I spasm terror overwhelms me. It happens when I am relaxed and trying to sleep mostly, but I guess it will transfer during the day too when I advance with my tapering.

[Pugknows]

((((WiggleIt)))) You're going to be okay. We are early in WD. We need time to heal. Love, Pug

[WiggleIt]

I have joined several dystonia support groups and have found zero cases of people who have recovered from medication-induced dystonia.  

Plus, I am a member of many chronic pain support groups and have encountered people there who developed tardive dystonia after tricyclic antidepressants and none of them have recovered from the dystonia, either.

Plus, I found a new antidepressant support group and found people there with tardive dystonia who have not recovered, either.  

Literally zero people have recovered from what I have.  Also, it's a myth that it is only caused by neuroleptics.  I'm running into plenty of people who have developed it from other stuff.

Now I know that I will be disabled the rest of my life.  I guess it's better than hoping for a miracle like some fool. 

[Pugknows]

Sweetheart, you are going to recover. I promise you. There is no permanent damage in your brain, no matter how many support groups you join, or how many internet sites you visit, or how many horror stories you read. You and I are going to HEAL from all this in TIME. We are in the early stages of this WD nightmare.

 

Don't give up on yourself and your ability to heal so soon. After a couple of years, if you're still this bad off (and you won't be) THEN you can throw in the towel and you and I will buy matching wheelchairs, which we will decorate with sparklers and toilet paper. We will be a rolling fire hazard.

[WiggleIt]

I've read lots of akathisia recovery stories, Pug, so I know you will heal.  I've read zero medication-induced dystonia recoveries.  Plenty of people with medication-induced dystonia years out from the drugs.  I've heard all kinds of amazing psych med recoveries and none of them contain dystonia recovery.

I asked Alto and she didn't know of any. 

[Altostrata]

Please remember that people who are participating in Web support forums are those who have prolonged issues. The people who recovered have no reason to look for a forum and post.

 

Have you see this site? https://www.dystonia-foundation.org/what-is-dystonia/forms-of-dystonia/secondary-dystonia/more-on-secondary-dystonia

 

It seems most research looks at disease-caused dystonias rather than iatrogenic dystonias http://www.nlm.nih.gov/medlineplus/dystonia.html

[Altostrata]

Without much searching, I am finding reports of recovery. Googling "dystonia recovery":

 

http://musicians-focal-dystonia.com/role-models-recovery-musicians-focal-dystonia/

 

https://www.facebook.com/pages/Musicians-Focal-Dystonia-Recovery-is-Possible/124664920903885

 

http://www.davidvining.net/narrative.html

 

full recovery from dystonia http://curefordystonia.com/tag/full-recovery-from-dystonia/

 

http://www.ipsen.co.uk/ipsen_dystonia.php
 

The progress of dystonia is unpredictable. The severity of symptoms can vary from day to day, and while there often is an element of overall progression, it is difficult to estimate how long this will last. Typically, a focal dystonia will progress very gradually over a five-year period, and then progress no further. Symptoms in all dystonic conditions can vary.

 

For some people, their dystonia may sometimes improve or disappear altogether for no apparent reason. The likelihood of a total remission of symptoms has been estimated as somewhere between one-in-ten and one-in-twenty. In some cases, the dystonia may eventually return, but in others it will disappear completely.

 

 

There is a difference between "there is no cure" and "there is no recovery." "There is no cure" means medicine hasn't found treatments that reliably eliminate the symptoms. "Recovery" can take place in other ways.

 

From a very brief review of what I found on the Web, in primary (disease-caused) dystonia, "spontaneous" recovery occurs about 10% of the time -- as reported by doctors.

 

Acupuncture, chiropractic, and physical therapy can help -- to what extent have you explored these, WiggleIt?

[Petunia]

 I've read zero medication-induced dystonia recoveries.  Plenty of people with medication-induced dystonia years out from the drugs. 

 

I found this study of recovery from neuroleptic induced TD where medication was reduced or stopped for periods of time.

 

Tardive dyskinesia: two-year recovery.

Results - in over half the patients (56%) the TD was either not present or was markedly reduced. Patients under 40 years of age did much better. In 76% of this younger group the TD was completely gone or was markedly reduced.

 

http://www.researchgate.net/publication/17075727_Tardive_dyskinesia_two-year_recovery

[WiggleIt]

Without much searching, I am finding reports of recovery. Googling "dystonia recovery":

 

http://musicians-focal-dystonia.com/role-models-recovery-musicians-focal-dystonia/

 

https://www.facebook.com/pages/Musicians-Focal-Dystonia-Recovery-is-Possible/124664920903885

 

http://www.davidvining.net/narrative.html

 

full recovery from dystonia http://curefordystonia.com/tag/full-recovery-from-dystonia/

 

http://www.ipsen.co.uk/ipsen_dystonia.php

 

The progress of dystonia is unpredictable. The severity of symptoms can vary from day to day, and while there often is an element of overall progression, it is difficult to estimate how long this will last. Typically, a focal dystonia will progress very gradually over a five-year period, and then progress no further. Symptoms in all dystonic conditions can vary.

 

For some people, their dystonia may sometimes improve or disappear altogether for no apparent reason. The likelihood of a total remission of symptoms has been estimated as somewhere between one-in-ten and one-in-twenty. In some cases, the dystonia may eventually return, but in others it will disappear completely.

 

There is a difference between "there is no cure" and "there is no recovery." "There is no cure" means medicine hasn't found treatments that reliably eliminate the symptoms. "Recovery" can take place in other ways.

 

From a very brief review of what I found on the Web, in primary (disease-caused) dystonia, "spontaneous" recovery occurs about 10% of the time -- as reported by doctors.

 

Acupuncture, chiropractic, and physical therapy can help -- to what extent have you explored these, WiggleIt?

Thank you, Alto, as you know I've lost all hope, thank you for searching. I had already seen all but one of these links. There is a lot about Musician's dystonia recovery, but medication-induced dystonia recovery is what I'm not finding and that's why I'm freaking.

 

Bc of the dystonia, myoclonic jerks, and hypersensitivity, I cannot do acupuncture or massage as they flare up contortions and wiggles. Same with chiro. I've tried them.

 

I go to neuro physical therapy every week. I have not improved much. I start swallowing therapy for my tongue and throat next week.

[WiggleIt]

I've found one PubMed article saying 14% of tardive dystonia cases in one study.

 

http://www.ncbi.nlm.nih.gov/m/pubmed/9827766/?i=2&from=/1677236/related

 

All other PubMed studies I found show 0% recovery for tardive dystonia, and higher chance of spontaneous remission with tardive dyskinesia.

[luv2knit]

(((Wiggle))) Those who have recovered are out there living their lives--not sitting around on the internet talking about it. Sometimes I think we would be better off if we did not have the capability of researching this. I was not supposed to walk again--should not have ever gotten out of a wheelchair (with TM), but I didn't know that. Sometimes "knowledge" is not a good thing. Hang in there, Wiggle. I believe you will get better--and if God says you will get better, you WILL get better! The research doesn't mean a thing.

[WiggleIt]

I am having insomnia. I think I am having akathisia.

 

I am also having these terrible head rushes accompanied by a feeling of being "high," but a bad, terrifying high with a strange breathing pattern. Please, please help me.

 

It is as bad as month one. Internal shaking that never ceases.

 

I have seen people on hallucinogenic drugs having bad trips look like this.

[WiggleIt]

Body jerks waking me out of sleep. Have not slept in over 24 hours.

[WiggleIt]

Pins and needles in feet so bad it's hard to walk. They usually abate after a few minutes, but they are not abating.

[Skyler]

Pins and needles in feet so bad it's hard to walk. They usually abate after a few minutes, but they are not abating.

 

Hi Wiggle... I'm mostly in the benzo section, but do follow your posts. I'm so dreadfully sorry this is happening to you.  I've had myoclonic jerks and what were then called hypnic jerks at the onset of sleep.  The the hypnic jerks started after I got off ADs (took them for 3 months and came within a hair of having a grand mal seizure, so I had to stop abruptly) many years ago, and were the reason I ended up on Klonopin, which 20 years on I had to taper.  Ugh... this stuff is DREADFUL.  Every time I would fall asleep, my legs would jerk and wake me up.  Sometimes the jerks were so severe I'd get the illusion of of being airborne right off the bed.. Sleep was a real problem because I'd jerk most every time I started to drift off. I also had myoclonus for many years for which I took Dilantin.  Not as severe as what you describe, but I do kind of understand what happens when your body moves abruptly.  My thoughts are with you...

 

Skyler

 

PS..  I don't know how long the hypnic jerks actually lasted (NOT twenty years) because they would get retriggered every time I tried to go off the K... I did not realize the K was then causing the same reaction.  Oh what a tangled mess these drugs cause!  Thing is, they did stop because I no longer have them.  The myoclonus went on for 30+ years.. but then the cause was idiosyncratic and not caused by a drug.  I just know what myoclonus can feel like.

[Altostrata]

Unless it's caused by a diagnosable disease, I think the origin of most dystonia is mysterious -- as is true with dysautonomias.

 

14% recovery is not zero.

 

There is no way to predict what may happen for you. No doctor can predict it, you won't find any papers about people exactly like you. From what I've seen scanning the dystonia Web sites, complementary medicine is often recommended.

 

If I were you, I'd find the top dystonia expert in your area and see what that relationship can do for you.

[WiggleIt]

Alto, yes, I am still trying to find a neuro who can help. It's so hard.

[WiggleIt]

Thank you all who have commented. I can't respond back individually, but please know I read all your responses. I'm actually printing out and highlighting some of the things you guys said.

[WiggleIt]

I think there was a miracle tonight.

[Petunia]

  ....details?

[bluebalu86]

What happened ? 

[luv2knit]

God is still in the healing business! Do share when you are ready!

[Frustrated]

OMG I could use a good miracle!  Thank the Lord!

[Martina23]

I would also need a miracle, but I dont believe on miracles!

[WiggleIt]

The miracle was that I'm going to change my attitude.  

I was basically cold-turkeyed off two meds that I'd been on for years.  Now, I have movement disorders all over my body: face, tongue, lips, arms, legs, hips, feet.  They are disabling, but I watched some vids on YouTube and saw drug-induced tardive dyskinesia & tardive dystonia cases WAY worse than mine.  And I broke down in grateful tears to God, because I have reason to hope.

[Petunia]

I like your miracle Wiggle and I'm happy that you've been able to find some acceptance. Its so true that we can always find someone who is worse off than ourselves if we look. Being grateful for the good things in our lives and remaining hopeful, creates a calmer sort of energy in our body, which ultimately will help with healing.

 

I believe you are going to get better.

[Martina23]

And i thought already that all your dystonia disappeared over night ....

[AliG]

 I believe in miracles.  Acceptance and gratitude, perform miracles. I'm so glad you have had an "Aha" Moment.   I hope you can keep this momentum going.    I also believe you are going to get better.

[luv2knit]

Attitude makes a HUGE difference, no matter what the circumstance! I do believe you are going to get better--and I love your new attitude. ((Hugs))