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


WiggleIt

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  • Moderator Emeritus

Good news!!!  

I no longer think I have lymphatic cancer.  My arm was swollen due to the awkward posture that my dystonia causes me.  It pinches up my shoulder and neck, which means the domino effect is that my arm swells.  My neuro physical therapist is helping me with light stretches to get the swelling down.  The problem with stretching is that it also makes the dystonia and myoclonus worse, so it's a VERY hard balance to find gentle stretches that will reduce the pinching, but won't worsen the dystonia.  Dystonic muscle pinch themselves up, and the more you try to stretch them, the worse they pinch up on the rebound, so ya gotta find the right balance.  Luckily, I caught the problem before it became severe.  My loved ones said I was wrong, that my arm wasn't swollen, but I told them it was, even though it was slight.  Well, when my PT tested it, it turned out I was right and it was a good thing we caught it now because we can hopefully avert anything serious from snowballing.  

Bad news!!!  
The stupid eczema on my hands and feet isn't clearing up as well as I thought it was.  I need to remember to wear rubber gloves in the shower so I don't spread it anywhere.

Bad news!!!

My hairline is receding worse and shape has become deformed and square (disturbing because I'm a woman).  Eyelashes are falling even out more, especially right side.  No regrowth.

Bad news!!!
Still suffering from recurrence of many neurological problems that I thought had abated, including dizziness.

Good news!!!
Brain fog generally better.  

 

Good news

Tinnitus generally better.   

*I'm not a doctor and don't give medical advice, just personal experience
**Off all meds since Nov. 2014. Mentally & emotionally recovered; physically not
-Dual cold turkeys off TCA & Ativan in Oct 2014. Prescribed from 2011-2014

-All meds were Rxed off-label for an autoimmune illness.  It was a MISDIAGNOSIS, but I did not find out until AFTER meds caused damage.  All med tapers/cold turkeys directed by doctors 

-Nortriptyline May 2012 - Dec 2013. Cold turkey off nortrip & cold switched to desipramine

-Desipramine Jan 2014 - Oct. 29, 2014 (rapid taper/cold turkey)

-Lorazepam 1 mg per night during 2011
-Lorazepam 1 mg per month in 2012 (or less)

-Lorazepam on & off, Dec 2013 through Aug 2014. Didn't exceed 3x a week

-Lorazepam again in Oct. 2014 to help get off of desipramine. Last dose lzpam was 1 mg, Nov. 2, 2014. Immediate paradoxical reactions to benzos after stopping TCAs 

-First muscle/dystonia side effects started on nortriptyline, but docs too stupid to figure it out. On desipramine, muscle tremors & rigidity worsened

-Two weeks after I got off all meds, I developed full-blown TD.  Tardive dystonia, dyskinesia, myoclonic jerks ALL over body, ribcage wiggles, facial tics, twitching tongue & fingers, tremors/twitches of arms, legs, cognitive impairment, throat muscles semi-paralyzed & unable to swallow solid food, brain zaps, ears ring, dizzy, everything looks too far away, insomnia, numbness & electric shocks everywhere when I try to fall asleep, jerk awake from sleep with big, gasping breaths, wake with terrors & tremors, severely depressed.  NO HISTORY OF DEPRESSION, EVER. Meds CREATED it.

-Month 7: hair falling out; no vision improvement; still tardive dystonia; facial & tongue tics returned
-Month 8: back to acute, incl. Grand Mal seizure-like episodes. New mental torment, PGAD, worse insomnia
-Month 9: tardive dystonia worse, dyskinesia returned. Unable to breathe well due to dystonia in stomach, chest, throat
-Month 13: Back to acute, brain zaps back, developed eczema & stomach problems. Left leg no longer works right due to dystonia, meaning both legs now damaged
-7 years off: Huge improvements, incl. improved dystonia

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  • Moderator Emeritus

14 Months off:

 

Brain zaps returned.  They had gone away completely for several months and returned out of the BLUE. 

*I'm not a doctor and don't give medical advice, just personal experience
**Off all meds since Nov. 2014. Mentally & emotionally recovered; physically not
-Dual cold turkeys off TCA & Ativan in Oct 2014. Prescribed from 2011-2014

-All meds were Rxed off-label for an autoimmune illness.  It was a MISDIAGNOSIS, but I did not find out until AFTER meds caused damage.  All med tapers/cold turkeys directed by doctors 

-Nortriptyline May 2012 - Dec 2013. Cold turkey off nortrip & cold switched to desipramine

-Desipramine Jan 2014 - Oct. 29, 2014 (rapid taper/cold turkey)

-Lorazepam 1 mg per night during 2011
-Lorazepam 1 mg per month in 2012 (or less)

-Lorazepam on & off, Dec 2013 through Aug 2014. Didn't exceed 3x a week

-Lorazepam again in Oct. 2014 to help get off of desipramine. Last dose lzpam was 1 mg, Nov. 2, 2014. Immediate paradoxical reactions to benzos after stopping TCAs 

-First muscle/dystonia side effects started on nortriptyline, but docs too stupid to figure it out. On desipramine, muscle tremors & rigidity worsened

-Two weeks after I got off all meds, I developed full-blown TD.  Tardive dystonia, dyskinesia, myoclonic jerks ALL over body, ribcage wiggles, facial tics, twitching tongue & fingers, tremors/twitches of arms, legs, cognitive impairment, throat muscles semi-paralyzed & unable to swallow solid food, brain zaps, ears ring, dizzy, everything looks too far away, insomnia, numbness & electric shocks everywhere when I try to fall asleep, jerk awake from sleep with big, gasping breaths, wake with terrors & tremors, severely depressed.  NO HISTORY OF DEPRESSION, EVER. Meds CREATED it.

-Month 7: hair falling out; no vision improvement; still tardive dystonia; facial & tongue tics returned
-Month 8: back to acute, incl. Grand Mal seizure-like episodes. New mental torment, PGAD, worse insomnia
-Month 9: tardive dystonia worse, dyskinesia returned. Unable to breathe well due to dystonia in stomach, chest, throat
-Month 13: Back to acute, brain zaps back, developed eczema & stomach problems. Left leg no longer works right due to dystonia, meaning both legs now damaged
-7 years off: Huge improvements, incl. improved dystonia

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(((Wiggle))) I somehow missed reading about your dinner party. That's awesome! Sounds like you've had quite a mix of good news and bad news. So sorry about your brain zaps returning. I have had several symptoms go away, only to return again. Seems they come and go... but will eventually be gone for good!!

 

XOXO

Zoloft 100 mg. daily for Chronic Fatigue Syndrome since Oct. 1994 / Synthroid 88 mcg. daily / Supplements: Neptune Krill Oil-1,000 mg. twice daily/Astaxanthin 10 mg. twice daily/Ubiquinol 100 mg. twice daily (These 3 have allowed me to discontinue (approved by doctor) bp meds I was on. Calcium Citrate 500 mg. daily/Vitamin D3 2,400 iu daily/K2 (MK7) 100 mcg daily (osteopenia and fam. hist. of severe osteoporosis). Stress B Complex (1/2 dose)/Quercetin (for allergies/asthma)/Magnesium (400 mg. oral glycinate and about 50 mg. magnesium chloride spray oil a day, divided throughout day).

Tapered Zoloft about 6 wks. Totally off since the end of July (25-29, 2014). 3 wks. vertigo at end of taper, then 3-4 wks. OK, followed by withdrawal symptoms increasing in severity (nausea, gastric disturbances, loss of appetite, insomnia, restlessness, jitters, anxiety, agitation--jumping out of my skin--possible akathisia?) Seem to have paradoxical reactions to everything new, even Vitamin C. Severity of akathisia comes and goes, but is constant to some degree. Hard to leave house, and cannot be home alone. (Retired)

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Wiggle.  You're such a fighter !  I so admire your spirit.  You will get through this, in time.

Hugs,

Ali

Many SSRI's and SSNRI's over 20 years. Zoloft for 7 years followed by Effexor, Lexapro, Prozac, Cymbalta, Celexa, Pristiq, Valdoxan, Mianserin and more - on and off. No tapering. Cold turkey off Valdoxan - end of May 2014

 

                                                  Psych Drug - free since May 2014
.
         

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Wiggle!  I am happy to hear you managed the dinner party!  And about the good news regarding your symptoms too. Sorry about the negative stuff though.

 

I read a while back that you write poetry, have you done any lately?  I hope you have been able to keep it up.  How bad is the remaining brain fog?

I am not a medical professional and nothing I say is a medical opinion or meant to be medical advice, please seek a competent and trusted medical professional to consult for all medical decisions.

 

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Hi Wiggle, I just happened on something that suggested avocado oil was good for eczema.  I haven't tried it yet but thought maybe you'd be interested.  Mine isn't very dry, it just looks like some redness, so I'm not quite sure if this will help me as it sounds like it is more aimed at making your skin less dry.  However, I may give it a try anyway.  I will post with the results if I do.

 

Thinking of you,

 

US

I am not a medical professional and nothing I say is a medical opinion or meant to be medical advice, please seek a competent and trusted medical professional to consult for all medical decisions.

 

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  • 4 weeks later...

I was researching pain by sternum area and came across you thread. Seems like you are in a better place now.

Did you ever have sternum pain checked? Do you think this wAs also wds?

Started Effexor August 2012 Sept'12-150mg=extreme anxiety Oct'12 cut half-75mg severe wds

Feb 2013 68.5mg. Mar'13- 65mg. Apr'13-59mg. May'13-57mg. June '13-52mg Aug'13 49.75mg.

Sep'13-48.75. Nov'13-47mg Dec'13-45..5mg

May 2014 42mg. Jun'14 40mg (depressive mood started). Aug'14 -40mg/ started brintellix 2.5mg

Oct '14 -39 Nov'14 36.89 Dec'14 34.45

Jan 2015- 31 Feb'15 29mg. Mar'15 26.72. Apr'15 24.48. May'15 22.31mg. Jun'15 20.30mg

Aug'15-18.89. Oct'15 16.96. Nov/16- 16.10. Dec/15- 15mg

Jan 2016-14.22. May'16 11.45. Aug'16-9.60. Sep/16- 8.88mg. Oct/16- 8.39mg. Nov/16- 8.13. Dec/16- 7.89

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  • 1 month later...
  • Moderator Emeritus

Hey everybody,

 

It's March 2016.

 

I'm sorry I haven't been around much. I think I've healed about as much as I'm going to, which is to say that I've been left significantly disabled by the medications and have not been able to return to a normal life. Sure, I've seen improvements, but they've plateaued, and some problems have even returned.

 

I'm now at 16 months off meds and my swallowing paralysis has returned. Those of you following my story will remember that for the first six months of withdrawal, my throat was significantly paralyzed and I could not swallow solid food at all and had to have an all-liquid diet for all of my meals. Around month 7 off meds, my swallowing slowly got better and I eventually recovered about 75% of my swallowing function, with only occasional episodes of food getting briefly stuck in my throat due to damaged muscles.

 

I'm heartbroken to report that now at month 16, my throat has seen an inexplicable recurrence of swallowing problems and various throat muscle problems. Yesterday and today, I've had to go back to soft foods and blended foods because I was choking so much on normal food.

 

I still have every medication-induced problem to some degree. Nothing has recovered 100%. My medication-induced movement disorder seems to have worsened a bit lately, and my walking has gotten more difficult lately.

 

Seems the pattern has gone from SEVERE to improvement to regression again, although not back into total severity. The throat is not AS severe as it was in the first six months of withdrawal, but it's pretty flaming bad. Let's not mince words.

 

I hope no newbies read my thread. Yes, mental and emotional hell has GREATLY, GREATLY improved, but I have been left a changed person, not for the better. And, in my case, we cannot forget or deny that I have been left significantly physically and neurologically crippled. That is NOT a metaphor. I still need a cane or walker to leave my house.

 

Going back to blended foods because of my throat damage... I can't express to you the depth of horror that is.

 

Plus, my hair loss and eyelash continues. They just... keep... falling... out.

 

I do see friends again, though, once, maybe twice, per month, and I see my extended family often. I still love with my parents who still bear a SIGNIFICANT workload caring for me in their old age.

 

All in all, things could be worse, and I should be grateful for what I do have, but NOTHING will ever make up for the life I lost. Nothing makes this situation okay, and--I'm sorry to have to say it--some people don't recover from what the meds did. This is, and should be, a place of hope for newcomers, so I hope they don't see what I have to say. I hope I'm in the minority of people who have ended up this severely disabled from pharmaceuticals, but even if I am a minority, that makes my story no less important.

 

I just don't want newbies to see it and get scared and assume they're going to have my same bad luck also.

 

That's all for now.

*I'm not a doctor and don't give medical advice, just personal experience
**Off all meds since Nov. 2014. Mentally & emotionally recovered; physically not
-Dual cold turkeys off TCA & Ativan in Oct 2014. Prescribed from 2011-2014

-All meds were Rxed off-label for an autoimmune illness.  It was a MISDIAGNOSIS, but I did not find out until AFTER meds caused damage.  All med tapers/cold turkeys directed by doctors 

-Nortriptyline May 2012 - Dec 2013. Cold turkey off nortrip & cold switched to desipramine

-Desipramine Jan 2014 - Oct. 29, 2014 (rapid taper/cold turkey)

-Lorazepam 1 mg per night during 2011
-Lorazepam 1 mg per month in 2012 (or less)

-Lorazepam on & off, Dec 2013 through Aug 2014. Didn't exceed 3x a week

-Lorazepam again in Oct. 2014 to help get off of desipramine. Last dose lzpam was 1 mg, Nov. 2, 2014. Immediate paradoxical reactions to benzos after stopping TCAs 

-First muscle/dystonia side effects started on nortriptyline, but docs too stupid to figure it out. On desipramine, muscle tremors & rigidity worsened

-Two weeks after I got off all meds, I developed full-blown TD.  Tardive dystonia, dyskinesia, myoclonic jerks ALL over body, ribcage wiggles, facial tics, twitching tongue & fingers, tremors/twitches of arms, legs, cognitive impairment, throat muscles semi-paralyzed & unable to swallow solid food, brain zaps, ears ring, dizzy, everything looks too far away, insomnia, numbness & electric shocks everywhere when I try to fall asleep, jerk awake from sleep with big, gasping breaths, wake with terrors & tremors, severely depressed.  NO HISTORY OF DEPRESSION, EVER. Meds CREATED it.

-Month 7: hair falling out; no vision improvement; still tardive dystonia; facial & tongue tics returned
-Month 8: back to acute, incl. Grand Mal seizure-like episodes. New mental torment, PGAD, worse insomnia
-Month 9: tardive dystonia worse, dyskinesia returned. Unable to breathe well due to dystonia in stomach, chest, throat
-Month 13: Back to acute, brain zaps back, developed eczema & stomach problems. Left leg no longer works right due to dystonia, meaning both legs now damaged
-7 years off: Huge improvements, incl. improved dystonia

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  • Moderator Emeritus

Also, there are so many of you here with whom I had personal contact and I would like to continue corresponding. Unfortunately, I have not cleaned out my messages in such a long time, so the inbox is full and I can't send or receive any right now until I take care of that!

 

But I don't mind corresponding on my thread or via text, for those pals with whom I exchanged phone numbers.

*I'm not a doctor and don't give medical advice, just personal experience
**Off all meds since Nov. 2014. Mentally & emotionally recovered; physically not
-Dual cold turkeys off TCA & Ativan in Oct 2014. Prescribed from 2011-2014

-All meds were Rxed off-label for an autoimmune illness.  It was a MISDIAGNOSIS, but I did not find out until AFTER meds caused damage.  All med tapers/cold turkeys directed by doctors 

-Nortriptyline May 2012 - Dec 2013. Cold turkey off nortrip & cold switched to desipramine

-Desipramine Jan 2014 - Oct. 29, 2014 (rapid taper/cold turkey)

-Lorazepam 1 mg per night during 2011
-Lorazepam 1 mg per month in 2012 (or less)

-Lorazepam on & off, Dec 2013 through Aug 2014. Didn't exceed 3x a week

-Lorazepam again in Oct. 2014 to help get off of desipramine. Last dose lzpam was 1 mg, Nov. 2, 2014. Immediate paradoxical reactions to benzos after stopping TCAs 

-First muscle/dystonia side effects started on nortriptyline, but docs too stupid to figure it out. On desipramine, muscle tremors & rigidity worsened

-Two weeks after I got off all meds, I developed full-blown TD.  Tardive dystonia, dyskinesia, myoclonic jerks ALL over body, ribcage wiggles, facial tics, twitching tongue & fingers, tremors/twitches of arms, legs, cognitive impairment, throat muscles semi-paralyzed & unable to swallow solid food, brain zaps, ears ring, dizzy, everything looks too far away, insomnia, numbness & electric shocks everywhere when I try to fall asleep, jerk awake from sleep with big, gasping breaths, wake with terrors & tremors, severely depressed.  NO HISTORY OF DEPRESSION, EVER. Meds CREATED it.

-Month 7: hair falling out; no vision improvement; still tardive dystonia; facial & tongue tics returned
-Month 8: back to acute, incl. Grand Mal seizure-like episodes. New mental torment, PGAD, worse insomnia
-Month 9: tardive dystonia worse, dyskinesia returned. Unable to breathe well due to dystonia in stomach, chest, throat
-Month 13: Back to acute, brain zaps back, developed eczema & stomach problems. Left leg no longer works right due to dystonia, meaning both legs now damaged
-7 years off: Huge improvements, incl. improved dystonia

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(((Wiggle))) I know things seem hopeless to you now, but at 16 months out, I can assure you that there is much more recovery to come. I am 20 months out, and I am far from recovered. I've seen very few who are recovered at any less than two years out, and many are not recovered for 3 years and even longer. I had one lady message me and tell me she was about ready to resume her normal activities. I said "that's great" and asked her how long she had been off. Her answer? 6 years! Now, I know that's a depressingly long time, but recovery is ongoing!!

 

XOXO

Zoloft 100 mg. daily for Chronic Fatigue Syndrome since Oct. 1994 / Synthroid 88 mcg. daily / Supplements: Neptune Krill Oil-1,000 mg. twice daily/Astaxanthin 10 mg. twice daily/Ubiquinol 100 mg. twice daily (These 3 have allowed me to discontinue (approved by doctor) bp meds I was on. Calcium Citrate 500 mg. daily/Vitamin D3 2,400 iu daily/K2 (MK7) 100 mcg daily (osteopenia and fam. hist. of severe osteoporosis). Stress B Complex (1/2 dose)/Quercetin (for allergies/asthma)/Magnesium (400 mg. oral glycinate and about 50 mg. magnesium chloride spray oil a day, divided throughout day).

Tapered Zoloft about 6 wks. Totally off since the end of July (25-29, 2014). 3 wks. vertigo at end of taper, then 3-4 wks. OK, followed by withdrawal symptoms increasing in severity (nausea, gastric disturbances, loss of appetite, insomnia, restlessness, jitters, anxiety, agitation--jumping out of my skin--possible akathisia?) Seem to have paradoxical reactions to everything new, even Vitamin C. Severity of akathisia comes and goes, but is constant to some degree. Hard to leave house, and cannot be home alone. (Retired)

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  • 2 months later...
  • Member

I'd love to hear from you again. I think of you a lot and send you good thoughts whenever you cross my mind. I have an address in my profile if you can't text.

What happened and how I arrived here: http://survivingantidepressants.org/index.php?/topic/4243-cymbaltawithdrawal5600-introduction/#entry50878

 

July 2016 I have decided to leave my story here at SA unfinished. I have left my contact information in my profile for anyone who wishes to talk to me. I have a posting history spanning nearly 4 years and 3000+ posts all over the site.

 

Thank you to all who participated in my recovery. I'll miss talking to you but know that I'll be cheering you on from the sidelines, suffering and rejoicing with you in spirit, as you go on in your journey.

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  • 1 month later...
  • Moderator Emeritus

20 months off:

 

Back to complete acute, with just as bad dystonic storms as I had in the beginning and MUCH WORSE insomnia. Worse feelings of internal electrocution.

 

This insomnia is scaring me. I'm sure it will kill me. I had some truly great days in mid-June.

 

Now I am physically worse than I was in acute. It actually feels like I'm suffering the acute onset of fibro or something.

 

Plus, the night-time wiggles and insomnia are back.

 

I'm afraid this insomnia will kill me. I truly am. I never suffered it the way others did and I did NOT expect to ever suffer from it like this.

 

My legs are exploding in painful pins and needles and I cannot imagine walking like this, although I am unable to walk at all currently anyway. I am bedridden worse than in original acute. I have a handicap portable toilet next to my bed bc I cannot make it to the bathroom.

 

My brain fog is nowhere near as bad as it was in original acute, but my physical symptoms are so much worse.

 

I now need to be wheeled in a wheelchair everywhere and I have stabbing muscle pains all over my whole body. That's why I think another level of damage got unlocked that is probably med-induced fibro.

 

How can I get some sleep???

*I'm not a doctor and don't give medical advice, just personal experience
**Off all meds since Nov. 2014. Mentally & emotionally recovered; physically not
-Dual cold turkeys off TCA & Ativan in Oct 2014. Prescribed from 2011-2014

-All meds were Rxed off-label for an autoimmune illness.  It was a MISDIAGNOSIS, but I did not find out until AFTER meds caused damage.  All med tapers/cold turkeys directed by doctors 

-Nortriptyline May 2012 - Dec 2013. Cold turkey off nortrip & cold switched to desipramine

-Desipramine Jan 2014 - Oct. 29, 2014 (rapid taper/cold turkey)

-Lorazepam 1 mg per night during 2011
-Lorazepam 1 mg per month in 2012 (or less)

-Lorazepam on & off, Dec 2013 through Aug 2014. Didn't exceed 3x a week

-Lorazepam again in Oct. 2014 to help get off of desipramine. Last dose lzpam was 1 mg, Nov. 2, 2014. Immediate paradoxical reactions to benzos after stopping TCAs 

-First muscle/dystonia side effects started on nortriptyline, but docs too stupid to figure it out. On desipramine, muscle tremors & rigidity worsened

-Two weeks after I got off all meds, I developed full-blown TD.  Tardive dystonia, dyskinesia, myoclonic jerks ALL over body, ribcage wiggles, facial tics, twitching tongue & fingers, tremors/twitches of arms, legs, cognitive impairment, throat muscles semi-paralyzed & unable to swallow solid food, brain zaps, ears ring, dizzy, everything looks too far away, insomnia, numbness & electric shocks everywhere when I try to fall asleep, jerk awake from sleep with big, gasping breaths, wake with terrors & tremors, severely depressed.  NO HISTORY OF DEPRESSION, EVER. Meds CREATED it.

-Month 7: hair falling out; no vision improvement; still tardive dystonia; facial & tongue tics returned
-Month 8: back to acute, incl. Grand Mal seizure-like episodes. New mental torment, PGAD, worse insomnia
-Month 9: tardive dystonia worse, dyskinesia returned. Unable to breathe well due to dystonia in stomach, chest, throat
-Month 13: Back to acute, brain zaps back, developed eczema & stomach problems. Left leg no longer works right due to dystonia, meaning both legs now damaged
-7 years off: Huge improvements, incl. improved dystonia

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  • Moderator Emeritus

Such severe dystonic storm that am in ER.

*I'm not a doctor and don't give medical advice, just personal experience
**Off all meds since Nov. 2014. Mentally & emotionally recovered; physically not
-Dual cold turkeys off TCA & Ativan in Oct 2014. Prescribed from 2011-2014

-All meds were Rxed off-label for an autoimmune illness.  It was a MISDIAGNOSIS, but I did not find out until AFTER meds caused damage.  All med tapers/cold turkeys directed by doctors 

-Nortriptyline May 2012 - Dec 2013. Cold turkey off nortrip & cold switched to desipramine

-Desipramine Jan 2014 - Oct. 29, 2014 (rapid taper/cold turkey)

-Lorazepam 1 mg per night during 2011
-Lorazepam 1 mg per month in 2012 (or less)

-Lorazepam on & off, Dec 2013 through Aug 2014. Didn't exceed 3x a week

-Lorazepam again in Oct. 2014 to help get off of desipramine. Last dose lzpam was 1 mg, Nov. 2, 2014. Immediate paradoxical reactions to benzos after stopping TCAs 

-First muscle/dystonia side effects started on nortriptyline, but docs too stupid to figure it out. On desipramine, muscle tremors & rigidity worsened

-Two weeks after I got off all meds, I developed full-blown TD.  Tardive dystonia, dyskinesia, myoclonic jerks ALL over body, ribcage wiggles, facial tics, twitching tongue & fingers, tremors/twitches of arms, legs, cognitive impairment, throat muscles semi-paralyzed & unable to swallow solid food, brain zaps, ears ring, dizzy, everything looks too far away, insomnia, numbness & electric shocks everywhere when I try to fall asleep, jerk awake from sleep with big, gasping breaths, wake with terrors & tremors, severely depressed.  NO HISTORY OF DEPRESSION, EVER. Meds CREATED it.

-Month 7: hair falling out; no vision improvement; still tardive dystonia; facial & tongue tics returned
-Month 8: back to acute, incl. Grand Mal seizure-like episodes. New mental torment, PGAD, worse insomnia
-Month 9: tardive dystonia worse, dyskinesia returned. Unable to breathe well due to dystonia in stomach, chest, throat
-Month 13: Back to acute, brain zaps back, developed eczema & stomach problems. Left leg no longer works right due to dystonia, meaning both legs now damaged
-7 years off: Huge improvements, incl. improved dystonia

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  • Administrator

Very sad to hear you're having such serious problems, WiggleIt. Can you see a neurologist in the hospital?

 

Have you discussed such as Keppra or lamotrigine (Lamictal) with any of your doctors?
 

WiggleIt, I would put the question of reinstatement aside. My impression is your nervous system is so sensitive, this would not be a good idea.
 
You mentioned a neurologist specializing in movement disorders. Is there any way you can see this doctor faster? Perhaps ask to be put on the waiting list in case of cancellations?
 
You might discuss a nervous system-calming drug such as lamotrigine at a very low dose. Read these topics
One theory of antidepressant withdrawal syndrome
dysautonomia
 
....

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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  • Moderator Emeritus

 

Very sad to hear you're having such serious problems, WiggleIt. Can you see a neurologist in the hospital?

 

Have you discussed such as Keppra or lamotrigine (Lamictal) with any of your doctors?

 

WiggleIt, I would put the question of reinstatement aside. My impression is your nervous system is so sensitive, this would not be a good idea.

 

You mentioned a neurologist specializing in movement disorders. Is there any way you can see this doctor faster? Perhaps ask to be put on the waiting list in case of cancellations?

 

You might discuss a nervous system-calming drug such as lamotrigine at a very low dose. Read these topics

One theory of antidepressant withdrawal syndrome

dysautonomia

 

....

Hi Alto....

 

No I did not discuss meds with any doctor. Despite several docs confirming the medication-induced movement disorder, the neurologists have all denied it.

 

I have body zaps and brain zaps again.

 

See, I was actually doing very well for a while. Even though I had stayed permanently damaged, I also had huge improvements. I was able to drive and go run one small errand a day. Not two, but one. But it was pretty amazing improvement. My dystonia was always present, but mild enough that it didn't make me suffer desperately.

 

This past week, I overused my ankles and wrists and developed bad tendinitis in both feet and wrists.

 

Then, my left side all of a sudden drooped and left leg started dragging. For the last 20 months, my left side has been rigid and my right side has been droopy. Now, both sides are droopy and my dystonia is awful, and even some wiggly dyskinesia-type movements came back, which had totally remitted for a long time.

 

Also, body zaps and brain zaps are backc with a lot of those zaps wing constant in the tendinitis-having feet.

 

I don't know if the tendinitis re-triggered the previously-under-control dystonia, and re-triggered the insomnia or what. I don't know if this will get better if I rehab my feet and hands, or if I'm screwed now.

 

Despite the permanent damage I always emphasized, I had made real strides. I wasn't happy that I was permanently damaged, but my life was bearable and even had days of joy. It's like you don't know what you've got til it's gone. I was upset bc I only had a few good hours a day and now I would give anything to have that back.

 

Altostrata, is it even possible for a change in muscle and tendon input to spur a neurological reaction like this? My physical therapists seem to think so.

 

Absolutely everything from acute has come back. The brain fog is not as bad, but I think the physical stuff is comparable, with the insomnia and nighttime dystonia actually being a shade worse.

 

The ER doc seemed to think that if I rehab the muscle/tendon injuries, then I have a shot of the dystonia flare calming down. I know this is not exactly your purview, but what do you think? Are we looking at correlation or causation?

 

I feel hopeless, but also hopeful. I've seen my body come back from the impossible. Did it recover? No. But it came out of hell. That counts for a lot.

 

Interestingly, the body zaps seem to be happening along the muscles and tendons that are overly tight and got overused. I'm worried about whether it's really rehab-able since some of that rigidity is chronic from the dystonia.

 

I've also been reading about complex regional pain syndrome, and this sounds like it. CRPS had shown to be rehab-able with early intervention.

 

What do you think, Alto? Should I be looking at pill intervention or neuromuscular movement intervention?

 

Have you ever come across anything like this before?

*I'm not a doctor and don't give medical advice, just personal experience
**Off all meds since Nov. 2014. Mentally & emotionally recovered; physically not
-Dual cold turkeys off TCA & Ativan in Oct 2014. Prescribed from 2011-2014

-All meds were Rxed off-label for an autoimmune illness.  It was a MISDIAGNOSIS, but I did not find out until AFTER meds caused damage.  All med tapers/cold turkeys directed by doctors 

-Nortriptyline May 2012 - Dec 2013. Cold turkey off nortrip & cold switched to desipramine

-Desipramine Jan 2014 - Oct. 29, 2014 (rapid taper/cold turkey)

-Lorazepam 1 mg per night during 2011
-Lorazepam 1 mg per month in 2012 (or less)

-Lorazepam on & off, Dec 2013 through Aug 2014. Didn't exceed 3x a week

-Lorazepam again in Oct. 2014 to help get off of desipramine. Last dose lzpam was 1 mg, Nov. 2, 2014. Immediate paradoxical reactions to benzos after stopping TCAs 

-First muscle/dystonia side effects started on nortriptyline, but docs too stupid to figure it out. On desipramine, muscle tremors & rigidity worsened

-Two weeks after I got off all meds, I developed full-blown TD.  Tardive dystonia, dyskinesia, myoclonic jerks ALL over body, ribcage wiggles, facial tics, twitching tongue & fingers, tremors/twitches of arms, legs, cognitive impairment, throat muscles semi-paralyzed & unable to swallow solid food, brain zaps, ears ring, dizzy, everything looks too far away, insomnia, numbness & electric shocks everywhere when I try to fall asleep, jerk awake from sleep with big, gasping breaths, wake with terrors & tremors, severely depressed.  NO HISTORY OF DEPRESSION, EVER. Meds CREATED it.

-Month 7: hair falling out; no vision improvement; still tardive dystonia; facial & tongue tics returned
-Month 8: back to acute, incl. Grand Mal seizure-like episodes. New mental torment, PGAD, worse insomnia
-Month 9: tardive dystonia worse, dyskinesia returned. Unable to breathe well due to dystonia in stomach, chest, throat
-Month 13: Back to acute, brain zaps back, developed eczema & stomach problems. Left leg no longer works right due to dystonia, meaning both legs now damaged
-7 years off: Huge improvements, incl. improved dystonia

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  • Moderator Emeritus

Body zaps no longer localized to injured limbs. Just had a zap up my vagus nerve and into my mouth.

*I'm not a doctor and don't give medical advice, just personal experience
**Off all meds since Nov. 2014. Mentally & emotionally recovered; physically not
-Dual cold turkeys off TCA & Ativan in Oct 2014. Prescribed from 2011-2014

-All meds were Rxed off-label for an autoimmune illness.  It was a MISDIAGNOSIS, but I did not find out until AFTER meds caused damage.  All med tapers/cold turkeys directed by doctors 

-Nortriptyline May 2012 - Dec 2013. Cold turkey off nortrip & cold switched to desipramine

-Desipramine Jan 2014 - Oct. 29, 2014 (rapid taper/cold turkey)

-Lorazepam 1 mg per night during 2011
-Lorazepam 1 mg per month in 2012 (or less)

-Lorazepam on & off, Dec 2013 through Aug 2014. Didn't exceed 3x a week

-Lorazepam again in Oct. 2014 to help get off of desipramine. Last dose lzpam was 1 mg, Nov. 2, 2014. Immediate paradoxical reactions to benzos after stopping TCAs 

-First muscle/dystonia side effects started on nortriptyline, but docs too stupid to figure it out. On desipramine, muscle tremors & rigidity worsened

-Two weeks after I got off all meds, I developed full-blown TD.  Tardive dystonia, dyskinesia, myoclonic jerks ALL over body, ribcage wiggles, facial tics, twitching tongue & fingers, tremors/twitches of arms, legs, cognitive impairment, throat muscles semi-paralyzed & unable to swallow solid food, brain zaps, ears ring, dizzy, everything looks too far away, insomnia, numbness & electric shocks everywhere when I try to fall asleep, jerk awake from sleep with big, gasping breaths, wake with terrors & tremors, severely depressed.  NO HISTORY OF DEPRESSION, EVER. Meds CREATED it.

-Month 7: hair falling out; no vision improvement; still tardive dystonia; facial & tongue tics returned
-Month 8: back to acute, incl. Grand Mal seizure-like episodes. New mental torment, PGAD, worse insomnia
-Month 9: tardive dystonia worse, dyskinesia returned. Unable to breathe well due to dystonia in stomach, chest, throat
-Month 13: Back to acute, brain zaps back, developed eczema & stomach problems. Left leg no longer works right due to dystonia, meaning both legs now damaged
-7 years off: Huge improvements, incl. improved dystonia

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  • Mentor

Hello Wigglett, and everyone on this thread. I also feel like it is time to catch up with friends, all about as far off the meds as me. Sorry you have falled back Wigglett.

You are such a fighter. All I know is, every month for me is different, in such subtle ways. I try to focus on the positive, even if it is tiny, and attempt to forget the other horrors.

 

It is Summer in USA, correct? I know my hair falls out every summer, I moult! Not eyelashes, though, I do not have many anyway, and being blonde, doesnt look like I have any.

 

My worst symptom at present, is inability to do anything, no motivation, no joy, nothing. Oh and an insane itch, my scalp is full of scabs! Inability to even shower.

 

So actually, I think I am doing well! I am grateful.

 

Hang in there Wigglett. I never thought I would cope with all this for a month, now it is 18 months, and I'm still here......

 

what you have gone through is unbelieveable, one very strong, inspirational person.

1992 Dothiepin 375mg 8 weeks, exhaustion/depression.  Serotonin syndrome, oh yes!  seizures . Fell pregnant, 3rd baby, Nitrous Oxide, 3 weeks mental hospital pp psychosis. zoloft tegretol.

Feb 1996 ct tegretol, tapered Zoloft 8 weeks. as (unexpectedly)  pregnant. Steven died after 3 days.(Zolft HLHS baby).  98 had run in with Paxil, 2 tablets, 3 weeks taper, survived.
2005..menopause? exhausted again. Zyprexa, mad in three days, fallout....  Seroquel, Effexor, tegretol,   and 8 years of self destruction. Failed taper.
Damn 1/4 valium... nuts again! .fallout, zoloft 100mg  seroquol 400mg mirtazapine 45 mg  tegretol 400mg.  Mid 14 3 month taper. Nov 14 CRASH.
Mid 15 ....   75mg  seroquel,  3 x 1800mg SJW  2 week window end of December followed by 6 week wave
5/2 68mg seroquel, 2.5 x 1800mg SJW::::20/2 61mg seroquel, 2.5 x  SJW::: 26/2 54mg seroquel, 2 x SJW::::21/3 43mg seroquel, 1 x 2700SJW :::: 23/4 36mg seroquel 1 x 1800 SJW
15/5 33mg seroquel, 1 x SJW::::   28/5 30mg seroquel, 1 x SJW::::;  18/6 25mg seroquel 1/2 SJW::::, 11/7 21mg seroquel 1/2 SJW::, 26/7 18mg seroquel 1/2 SJW:::, 9/8 12mg seroquel :::, 16/8 6mg seroquel ;;;;, 12/9 0 jump.

23/9  3mg.....,  27/9 0mg.  Reinstated, 6mg, then 12mg.............  LIGHTBULB MOMENT,  I have  MTHFR 2x mutations.  CFS and issues with MOULD in my home. So I left home, and working 150km away during week, loving it.

Oh was hard, panic attacks first week, gone now, along with the mould issues.

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  • Moderator Emeritus

Altostrata,

 

I checked with a fellow Dystonia person in my Dystonia support group who is on Lamictal and it does not control her movements.

 

Also, it has been 33 hours since I last slept. This has never happened to me. I have never suffered from insomnia like this. I know others here have and I do not know how to deal with it, but I am truly afraid that I'm going to die from this.

*I'm not a doctor and don't give medical advice, just personal experience
**Off all meds since Nov. 2014. Mentally & emotionally recovered; physically not
-Dual cold turkeys off TCA & Ativan in Oct 2014. Prescribed from 2011-2014

-All meds were Rxed off-label for an autoimmune illness.  It was a MISDIAGNOSIS, but I did not find out until AFTER meds caused damage.  All med tapers/cold turkeys directed by doctors 

-Nortriptyline May 2012 - Dec 2013. Cold turkey off nortrip & cold switched to desipramine

-Desipramine Jan 2014 - Oct. 29, 2014 (rapid taper/cold turkey)

-Lorazepam 1 mg per night during 2011
-Lorazepam 1 mg per month in 2012 (or less)

-Lorazepam on & off, Dec 2013 through Aug 2014. Didn't exceed 3x a week

-Lorazepam again in Oct. 2014 to help get off of desipramine. Last dose lzpam was 1 mg, Nov. 2, 2014. Immediate paradoxical reactions to benzos after stopping TCAs 

-First muscle/dystonia side effects started on nortriptyline, but docs too stupid to figure it out. On desipramine, muscle tremors & rigidity worsened

-Two weeks after I got off all meds, I developed full-blown TD.  Tardive dystonia, dyskinesia, myoclonic jerks ALL over body, ribcage wiggles, facial tics, twitching tongue & fingers, tremors/twitches of arms, legs, cognitive impairment, throat muscles semi-paralyzed & unable to swallow solid food, brain zaps, ears ring, dizzy, everything looks too far away, insomnia, numbness & electric shocks everywhere when I try to fall asleep, jerk awake from sleep with big, gasping breaths, wake with terrors & tremors, severely depressed.  NO HISTORY OF DEPRESSION, EVER. Meds CREATED it.

-Month 7: hair falling out; no vision improvement; still tardive dystonia; facial & tongue tics returned
-Month 8: back to acute, incl. Grand Mal seizure-like episodes. New mental torment, PGAD, worse insomnia
-Month 9: tardive dystonia worse, dyskinesia returned. Unable to breathe well due to dystonia in stomach, chest, throat
-Month 13: Back to acute, brain zaps back, developed eczema & stomach problems. Left leg no longer works right due to dystonia, meaning both legs now damaged
-7 years off: Huge improvements, incl. improved dystonia

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  • Moderator Emeritus

I have never gone over 24 hours without SOME KIND of sleep, never. Even if it has just been two hours.

*I'm not a doctor and don't give medical advice, just personal experience
**Off all meds since Nov. 2014. Mentally & emotionally recovered; physically not
-Dual cold turkeys off TCA & Ativan in Oct 2014. Prescribed from 2011-2014

-All meds were Rxed off-label for an autoimmune illness.  It was a MISDIAGNOSIS, but I did not find out until AFTER meds caused damage.  All med tapers/cold turkeys directed by doctors 

-Nortriptyline May 2012 - Dec 2013. Cold turkey off nortrip & cold switched to desipramine

-Desipramine Jan 2014 - Oct. 29, 2014 (rapid taper/cold turkey)

-Lorazepam 1 mg per night during 2011
-Lorazepam 1 mg per month in 2012 (or less)

-Lorazepam on & off, Dec 2013 through Aug 2014. Didn't exceed 3x a week

-Lorazepam again in Oct. 2014 to help get off of desipramine. Last dose lzpam was 1 mg, Nov. 2, 2014. Immediate paradoxical reactions to benzos after stopping TCAs 

-First muscle/dystonia side effects started on nortriptyline, but docs too stupid to figure it out. On desipramine, muscle tremors & rigidity worsened

-Two weeks after I got off all meds, I developed full-blown TD.  Tardive dystonia, dyskinesia, myoclonic jerks ALL over body, ribcage wiggles, facial tics, twitching tongue & fingers, tremors/twitches of arms, legs, cognitive impairment, throat muscles semi-paralyzed & unable to swallow solid food, brain zaps, ears ring, dizzy, everything looks too far away, insomnia, numbness & electric shocks everywhere when I try to fall asleep, jerk awake from sleep with big, gasping breaths, wake with terrors & tremors, severely depressed.  NO HISTORY OF DEPRESSION, EVER. Meds CREATED it.

-Month 7: hair falling out; no vision improvement; still tardive dystonia; facial & tongue tics returned
-Month 8: back to acute, incl. Grand Mal seizure-like episodes. New mental torment, PGAD, worse insomnia
-Month 9: tardive dystonia worse, dyskinesia returned. Unable to breathe well due to dystonia in stomach, chest, throat
-Month 13: Back to acute, brain zaps back, developed eczema & stomach problems. Left leg no longer works right due to dystonia, meaning both legs now damaged
-7 years off: Huge improvements, incl. improved dystonia

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  • Moderator Emeritus

Tardive dyskinesia and Dystonia now all over face and torso.

*I'm not a doctor and don't give medical advice, just personal experience
**Off all meds since Nov. 2014. Mentally & emotionally recovered; physically not
-Dual cold turkeys off TCA & Ativan in Oct 2014. Prescribed from 2011-2014

-All meds were Rxed off-label for an autoimmune illness.  It was a MISDIAGNOSIS, but I did not find out until AFTER meds caused damage.  All med tapers/cold turkeys directed by doctors 

-Nortriptyline May 2012 - Dec 2013. Cold turkey off nortrip & cold switched to desipramine

-Desipramine Jan 2014 - Oct. 29, 2014 (rapid taper/cold turkey)

-Lorazepam 1 mg per night during 2011
-Lorazepam 1 mg per month in 2012 (or less)

-Lorazepam on & off, Dec 2013 through Aug 2014. Didn't exceed 3x a week

-Lorazepam again in Oct. 2014 to help get off of desipramine. Last dose lzpam was 1 mg, Nov. 2, 2014. Immediate paradoxical reactions to benzos after stopping TCAs 

-First muscle/dystonia side effects started on nortriptyline, but docs too stupid to figure it out. On desipramine, muscle tremors & rigidity worsened

-Two weeks after I got off all meds, I developed full-blown TD.  Tardive dystonia, dyskinesia, myoclonic jerks ALL over body, ribcage wiggles, facial tics, twitching tongue & fingers, tremors/twitches of arms, legs, cognitive impairment, throat muscles semi-paralyzed & unable to swallow solid food, brain zaps, ears ring, dizzy, everything looks too far away, insomnia, numbness & electric shocks everywhere when I try to fall asleep, jerk awake from sleep with big, gasping breaths, wake with terrors & tremors, severely depressed.  NO HISTORY OF DEPRESSION, EVER. Meds CREATED it.

-Month 7: hair falling out; no vision improvement; still tardive dystonia; facial & tongue tics returned
-Month 8: back to acute, incl. Grand Mal seizure-like episodes. New mental torment, PGAD, worse insomnia
-Month 9: tardive dystonia worse, dyskinesia returned. Unable to breathe well due to dystonia in stomach, chest, throat
-Month 13: Back to acute, brain zaps back, developed eczema & stomach problems. Left leg no longer works right due to dystonia, meaning both legs now damaged
-7 years off: Huge improvements, incl. improved dystonia

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  • Moderator Emeritus

Hi Wigglelt, I am so sorry to see that you are in such a bad wave after improving so much.  I can imagine how devastating it is, especially with the insomnia, which is one of my struggles so I know how it feels not to sleep.  Try not to worry about it, worrying about sleep doesn't help insomnia it makes it worse. When you go to bed don't try to fall asleep, get comfy and resign yourself to just resting. Rest your body and focus on your breathing, how it feels, relaxing muscles. They will most likely jump around but try not to let it upset you. Even if you go through the whole night like this, it is netter than the anxiety and trying to fall asleep and failing badly. Your brain will sleep eventually, maybe for an hour or so and that will be an improvement on no sleep.  I have gone for several days without sleep but using this technique and shutting out light I do sleep for 2 or 3 hours now. Sometimes I get 2 x 2 hour sleeps and that is amazing. 

 

I really hope you turn a corner and start to feel better soon, you have coped so well with all this and will get through this period too. 

Mamma hugs Wigglelt

**I am not a medical professional, if in doubt please consult a doctor with withdrawal knowledge.

 

 

Different drugs occasionally (mostly benzos) 1976 - 1981 (no problem)

1993 - 2002 in and out of hospital. every type of drug + ECT. Staring with seroxat

2002  effexor. 

Tapered  March 2012 to March 2013, ending with 5 beads.

Withdrawal April 2013 . Reinstated 5 beads reduced to 4 beads May 2013

Restarted taper  Nov 2013  

OFF EFFEXOR Feb 2015    :D 

Tapered atenolol and omeprazole Dec 2013 - May 2014

 

Tapering tramadol, Feb 2015 100mg , March 2015 50mg  

 July 2017 30mg.  May 15 2018 25mg

Taking fish oil, magnesium, B12, folic acid, bilberry eyebright for eye pressure. 

 

My story http://survivingantidepressants.org/index.php?/topic/4199-hello-mammap-checking-in/page-33

 

Lesson learned, slow down taper at lower doses. Taper no more than 10% of CURRENT dose if possible

 

 

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  • Moderator Emeritus

Hi Wigglelt, I am so sorry to see that you are in such a bad wave after improving so much. I can imagine how devastating it is, especially with the insomnia, which is one of my struggles so I know how it feels not to sleep. Try not to worry about it, worrying about sleep doesn't help insomnia it makes it worse. When you go to bed don't try to fall asleep, get comfy and resign yourself to just resting. Rest your body and focus on your breathing, how it feels, relaxing muscles. They will most likely jump around but try not to let it upset you. Even if you go through the whole night like this, it is netter than the anxiety and trying to fall asleep and failing badly. Your brain will sleep eventually, maybe for an hour or so and that will be an improvement on no sleep. I have gone for several days without sleep but using this technique and shutting out light I do sleep for 2 or 3 hours now. Sometimes I get 2 x 2 hour sleeps and that is amazing.

 

I really hope you turn a corner and start to feel better soon, you have coped so well with all this and will get through this period too.

Mamma hugs Wigglelt

This is amazing, kind advice mama. I will try. How have you been feeling?

*I'm not a doctor and don't give medical advice, just personal experience
**Off all meds since Nov. 2014. Mentally & emotionally recovered; physically not
-Dual cold turkeys off TCA & Ativan in Oct 2014. Prescribed from 2011-2014

-All meds were Rxed off-label for an autoimmune illness.  It was a MISDIAGNOSIS, but I did not find out until AFTER meds caused damage.  All med tapers/cold turkeys directed by doctors 

-Nortriptyline May 2012 - Dec 2013. Cold turkey off nortrip & cold switched to desipramine

-Desipramine Jan 2014 - Oct. 29, 2014 (rapid taper/cold turkey)

-Lorazepam 1 mg per night during 2011
-Lorazepam 1 mg per month in 2012 (or less)

-Lorazepam on & off, Dec 2013 through Aug 2014. Didn't exceed 3x a week

-Lorazepam again in Oct. 2014 to help get off of desipramine. Last dose lzpam was 1 mg, Nov. 2, 2014. Immediate paradoxical reactions to benzos after stopping TCAs 

-First muscle/dystonia side effects started on nortriptyline, but docs too stupid to figure it out. On desipramine, muscle tremors & rigidity worsened

-Two weeks after I got off all meds, I developed full-blown TD.  Tardive dystonia, dyskinesia, myoclonic jerks ALL over body, ribcage wiggles, facial tics, twitching tongue & fingers, tremors/twitches of arms, legs, cognitive impairment, throat muscles semi-paralyzed & unable to swallow solid food, brain zaps, ears ring, dizzy, everything looks too far away, insomnia, numbness & electric shocks everywhere when I try to fall asleep, jerk awake from sleep with big, gasping breaths, wake with terrors & tremors, severely depressed.  NO HISTORY OF DEPRESSION, EVER. Meds CREATED it.

-Month 7: hair falling out; no vision improvement; still tardive dystonia; facial & tongue tics returned
-Month 8: back to acute, incl. Grand Mal seizure-like episodes. New mental torment, PGAD, worse insomnia
-Month 9: tardive dystonia worse, dyskinesia returned. Unable to breathe well due to dystonia in stomach, chest, throat
-Month 13: Back to acute, brain zaps back, developed eczema & stomach problems. Left leg no longer works right due to dystonia, meaning both legs now damaged
-7 years off: Huge improvements, incl. improved dystonia

Link to comment

Hi Wigglelt, I am so sorry to see that you are in such a bad wave after improving so much. I can imagine how devastating it is, especially with the insomnia, which is one of my struggles so I know how it feels not to sleep. Try not to worry about it, worrying about sleep doesn't help insomnia it makes it worse. When you go to bed don't try to fall asleep, get comfy and resign yourself to just resting. Rest your body and focus on your breathing, how it feels, relaxing muscles. They will most likely jump around but try not to let it upset you. Even if you go through the whole night like this, it is netter than the anxiety and trying to fall asleep and failing badly. Your brain will sleep eventually, maybe for an hour or so and that will be an improvement on no sleep. I have gone for several days without sleep but using this technique and shutting out light I do sleep for 2 or 3 hours now. Sometimes I get 2 x 2 hour sleeps and that is amazing.

 

I really hope you turn a corner and start to feel better soon, you have coped so well with all this and will get through this period too.

Mamma hugs Wigglelt

Lexapro: started in 2002 at 10 mgs.

Ambien: started as a as needed sleep aid in 2010.

Quit Lexapro cold turkey in June 20015 due to contributing to low sodium issues.

Restarted Lexapro in late November for a week (only 5 mgs) but quit due to dizziness side effects. Side effects worsened for 3 weeks until

12/24/15: Protracted WD hit, experienced extreme anxiety, insomnia lack of full concentration and social challenges.

Reinstated Lexapro on 1/1/16 at 5 mgs. Increased per Dr to 7.5 MG. Tapered off Lexapro in March 2016.

Started 50MG of Seroquel in late January 2016 for bedtime to help in eliminate Ambien. Tapered off both Seroquel and Ambien in March 2016.

2/14/16: Prescribed both Remeron (15 MG) and Temazapam (15 MG) for sleep. Also use Klonopin and Ambien again in place of Temazapam to avoid addiction. However I did take Temazapam 60 straight days

6/15/16: Stopped use of all benzo's and now use Belsomra 1-2 times a week. Still on 15 MG of Remeron

10/11/16: Off all psych medications

 

After kindling, trying to regain my strength suffering from severe mental and physical fatigue.

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I just posted something on this. I had an EEG done yesterday and they said I was asleep when they came bank into the room 45 minutes later. They could tell by the waves. I wasn't asleep but laying with my eyes closed. I felt very relaxed but didn't drift off. Apparently that is enough to qualify as sleep in the Neurolgists world

Lexapro: started in 2002 at 10 mgs.

Ambien: started as a as needed sleep aid in 2010.

Quit Lexapro cold turkey in June 20015 due to contributing to low sodium issues.

Restarted Lexapro in late November for a week (only 5 mgs) but quit due to dizziness side effects. Side effects worsened for 3 weeks until

12/24/15: Protracted WD hit, experienced extreme anxiety, insomnia lack of full concentration and social challenges.

Reinstated Lexapro on 1/1/16 at 5 mgs. Increased per Dr to 7.5 MG. Tapered off Lexapro in March 2016.

Started 50MG of Seroquel in late January 2016 for bedtime to help in eliminate Ambien. Tapered off both Seroquel and Ambien in March 2016.

2/14/16: Prescribed both Remeron (15 MG) and Temazapam (15 MG) for sleep. Also use Klonopin and Ambien again in place of Temazapam to avoid addiction. However I did take Temazapam 60 straight days

6/15/16: Stopped use of all benzo's and now use Belsomra 1-2 times a week. Still on 15 MG of Remeron

10/11/16: Off all psych medications

 

After kindling, trying to regain my strength suffering from severe mental and physical fatigue.

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  • Administrator

I am very sorry that you're experiencing this setback.

 

While asking people in forums can be a good way to get background information, because one person said lamotrigine did not help her does not mean a seizure drug might not help you.

 

My guess is the waves causing your muscle contractions are unregulated electrical impulses from your nervous system. The seizure drugs tend to reduce these signals, that's how they work.

 

A doctor does not have to agree your symptoms are iatrogenic to be consulted about possible use of these drugs. Be sure to take potential hypersensitivity into account when dosing.

 

Quite often, people come here with different kinds of muscle tightness and body pain (your situation is on the extreme end). All I can suggest is magnesium (sometimes magnesium oil or Epsom salts baths work better), acupuncture, chiropractic, and physical therapy.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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Sorry to read of your struggles Wigglet.

Wishing you strength..stay strong.

Thought for the day: Lets stand up, and let’s speak out , together. G Olsen

We have until the 14th. Feb 2018. 

URGENT REQUEST Please consider submitting  for the petition on Prescribed Drug Dependence and Withdrawal currently awaiting its third consideration at the Scottish Parliament. You don't even have to be from Scotland. By clicking on the link below you can read some of the previous submissions but be warned many of them are quite harrowing.

http://www.parliament.scot/GettingInvolved/Petitions/PE01651   

Please tell them about your problems taking and withdrawing from antidepressants and/or benzos.

Send by email to petitions@parliament.scot and quote PE01651 in the subject heading. Keep to a maximum of 3 sides of A4 and you can't name for legal reasons any doctor you have consulted. Tell them if you wish to remain anonymous. We need the numbers to help convince the committee members we are not isolated cases. You have until mid February. Thank you

Recovering paxil addict

None of the published articles shed light on what ssri's ... actually do or what their hazards might be. Healy 2013. 

This is so true, with anything you get on these drugs, dependance, tapering, withdrawal symptoms, side effects, just silent. And if there is something mentioned then their is a serious disconnect between what is said and reality! 

  "Every time I read of a multi-person shooting, I always presume that person had just started a SSRI or had just stopped."  Dr Mosher. Me too! 

Over two decades later, the number of antidepressant prescriptions a year is slightly more than the number of people in the Western world. Most (nine out of 10) prescriptions are for patients who faced difficulties on stopping, equating to about a tenth of the population. These patients are often advised to continue treatment because their difficulties indicate they need ongoing treatment, just as a person with diabetes needs insulin. Healy 2015

I believe the ssri era will soon stand as one of the most shameful in the history of medicine. Healy 2015

Let people help people ... in a natural, kind, non-addictive (and non-big pharma) way. J Broadley 2017

 

 

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  • Moderator Emeritus

Not to be stubborn, but because of the fact that meds caused my movement disorder, I honestly don't think I could put another one into my body, even with the potential of stopping the TD.

 

I am, however, happy to try the other methods suggested. I'll keep up with PT, will consider acupuncture, and will add Epsom salts to my routine.

 

I've found a potential class action lawsuit to join for people who have developed dystonia, dyskinesia, or akathisia from psych meds. When I am feeling a bit better, I will post the law firm's phone number in case anyone else here has TD from meds and lives in US to join this suit.

*I'm not a doctor and don't give medical advice, just personal experience
**Off all meds since Nov. 2014. Mentally & emotionally recovered; physically not
-Dual cold turkeys off TCA & Ativan in Oct 2014. Prescribed from 2011-2014

-All meds were Rxed off-label for an autoimmune illness.  It was a MISDIAGNOSIS, but I did not find out until AFTER meds caused damage.  All med tapers/cold turkeys directed by doctors 

-Nortriptyline May 2012 - Dec 2013. Cold turkey off nortrip & cold switched to desipramine

-Desipramine Jan 2014 - Oct. 29, 2014 (rapid taper/cold turkey)

-Lorazepam 1 mg per night during 2011
-Lorazepam 1 mg per month in 2012 (or less)

-Lorazepam on & off, Dec 2013 through Aug 2014. Didn't exceed 3x a week

-Lorazepam again in Oct. 2014 to help get off of desipramine. Last dose lzpam was 1 mg, Nov. 2, 2014. Immediate paradoxical reactions to benzos after stopping TCAs 

-First muscle/dystonia side effects started on nortriptyline, but docs too stupid to figure it out. On desipramine, muscle tremors & rigidity worsened

-Two weeks after I got off all meds, I developed full-blown TD.  Tardive dystonia, dyskinesia, myoclonic jerks ALL over body, ribcage wiggles, facial tics, twitching tongue & fingers, tremors/twitches of arms, legs, cognitive impairment, throat muscles semi-paralyzed & unable to swallow solid food, brain zaps, ears ring, dizzy, everything looks too far away, insomnia, numbness & electric shocks everywhere when I try to fall asleep, jerk awake from sleep with big, gasping breaths, wake with terrors & tremors, severely depressed.  NO HISTORY OF DEPRESSION, EVER. Meds CREATED it.

-Month 7: hair falling out; no vision improvement; still tardive dystonia; facial & tongue tics returned
-Month 8: back to acute, incl. Grand Mal seizure-like episodes. New mental torment, PGAD, worse insomnia
-Month 9: tardive dystonia worse, dyskinesia returned. Unable to breathe well due to dystonia in stomach, chest, throat
-Month 13: Back to acute, brain zaps back, developed eczema & stomach problems. Left leg no longer works right due to dystonia, meaning both legs now damaged
-7 years off: Huge improvements, incl. improved dystonia

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I just posted something on this. I had an EEG done yesterday and they said I was asleep when they came bank into the room 45 minutes later. They could tell by the waves. I wasn't asleep but laying with my eyes closed. I felt very relaxed but didn't drift off. Apparently that is enough to qualify as sleep in the Neurolgists world

Neurologists are so dumb.

*I'm not a doctor and don't give medical advice, just personal experience
**Off all meds since Nov. 2014. Mentally & emotionally recovered; physically not
-Dual cold turkeys off TCA & Ativan in Oct 2014. Prescribed from 2011-2014

-All meds were Rxed off-label for an autoimmune illness.  It was a MISDIAGNOSIS, but I did not find out until AFTER meds caused damage.  All med tapers/cold turkeys directed by doctors 

-Nortriptyline May 2012 - Dec 2013. Cold turkey off nortrip & cold switched to desipramine

-Desipramine Jan 2014 - Oct. 29, 2014 (rapid taper/cold turkey)

-Lorazepam 1 mg per night during 2011
-Lorazepam 1 mg per month in 2012 (or less)

-Lorazepam on & off, Dec 2013 through Aug 2014. Didn't exceed 3x a week

-Lorazepam again in Oct. 2014 to help get off of desipramine. Last dose lzpam was 1 mg, Nov. 2, 2014. Immediate paradoxical reactions to benzos after stopping TCAs 

-First muscle/dystonia side effects started on nortriptyline, but docs too stupid to figure it out. On desipramine, muscle tremors & rigidity worsened

-Two weeks after I got off all meds, I developed full-blown TD.  Tardive dystonia, dyskinesia, myoclonic jerks ALL over body, ribcage wiggles, facial tics, twitching tongue & fingers, tremors/twitches of arms, legs, cognitive impairment, throat muscles semi-paralyzed & unable to swallow solid food, brain zaps, ears ring, dizzy, everything looks too far away, insomnia, numbness & electric shocks everywhere when I try to fall asleep, jerk awake from sleep with big, gasping breaths, wake with terrors & tremors, severely depressed.  NO HISTORY OF DEPRESSION, EVER. Meds CREATED it.

-Month 7: hair falling out; no vision improvement; still tardive dystonia; facial & tongue tics returned
-Month 8: back to acute, incl. Grand Mal seizure-like episodes. New mental torment, PGAD, worse insomnia
-Month 9: tardive dystonia worse, dyskinesia returned. Unable to breathe well due to dystonia in stomach, chest, throat
-Month 13: Back to acute, brain zaps back, developed eczema & stomach problems. Left leg no longer works right due to dystonia, meaning both legs now damaged
-7 years off: Huge improvements, incl. improved dystonia

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If any others come to my thread, ESPECIALLY those with tardive dystonia, dyskinesia, or akathisia, then PLEASE read all the way through this.  I've contacted this lawyer and AM suing:

"Have you come down with a movement disorder from psych meds, whether they were prescribed to you on-label OR off-label? Did you come down with permanent or temporary dystonia or dyskinesia or akathisia or myoclonus from psych meds?
 

Please join me and others who are working with a law firm to hold the pharma companies accountable.
 

Call Grisham and Barnhardt at 434-293-2939. Ask to speak with partner attorneys Tyler or Addison, or with their assistant/paralegal Bethany.
 

Please, we need ALL the victims to come forward, no matter how long ago this happened to you!"

*I'm not a doctor and don't give medical advice, just personal experience
**Off all meds since Nov. 2014. Mentally & emotionally recovered; physically not
-Dual cold turkeys off TCA & Ativan in Oct 2014. Prescribed from 2011-2014

-All meds were Rxed off-label for an autoimmune illness.  It was a MISDIAGNOSIS, but I did not find out until AFTER meds caused damage.  All med tapers/cold turkeys directed by doctors 

-Nortriptyline May 2012 - Dec 2013. Cold turkey off nortrip & cold switched to desipramine

-Desipramine Jan 2014 - Oct. 29, 2014 (rapid taper/cold turkey)

-Lorazepam 1 mg per night during 2011
-Lorazepam 1 mg per month in 2012 (or less)

-Lorazepam on & off, Dec 2013 through Aug 2014. Didn't exceed 3x a week

-Lorazepam again in Oct. 2014 to help get off of desipramine. Last dose lzpam was 1 mg, Nov. 2, 2014. Immediate paradoxical reactions to benzos after stopping TCAs 

-First muscle/dystonia side effects started on nortriptyline, but docs too stupid to figure it out. On desipramine, muscle tremors & rigidity worsened

-Two weeks after I got off all meds, I developed full-blown TD.  Tardive dystonia, dyskinesia, myoclonic jerks ALL over body, ribcage wiggles, facial tics, twitching tongue & fingers, tremors/twitches of arms, legs, cognitive impairment, throat muscles semi-paralyzed & unable to swallow solid food, brain zaps, ears ring, dizzy, everything looks too far away, insomnia, numbness & electric shocks everywhere when I try to fall asleep, jerk awake from sleep with big, gasping breaths, wake with terrors & tremors, severely depressed.  NO HISTORY OF DEPRESSION, EVER. Meds CREATED it.

-Month 7: hair falling out; no vision improvement; still tardive dystonia; facial & tongue tics returned
-Month 8: back to acute, incl. Grand Mal seizure-like episodes. New mental torment, PGAD, worse insomnia
-Month 9: tardive dystonia worse, dyskinesia returned. Unable to breathe well due to dystonia in stomach, chest, throat
-Month 13: Back to acute, brain zaps back, developed eczema & stomach problems. Left leg no longer works right due to dystonia, meaning both legs now damaged
-7 years off: Huge improvements, incl. improved dystonia

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Great news.

i wish you every success Wigglelt.

 

Maybe you should do what they call in the TV world a roadblock.

ie put this info across every thread!!

 

Anyway hope you get more people to join you.

 

nz11

Thought for the day: Lets stand up, and let’s speak out , together. G Olsen

We have until the 14th. Feb 2018. 

URGENT REQUEST Please consider submitting  for the petition on Prescribed Drug Dependence and Withdrawal currently awaiting its third consideration at the Scottish Parliament. You don't even have to be from Scotland. By clicking on the link below you can read some of the previous submissions but be warned many of them are quite harrowing.

http://www.parliament.scot/GettingInvolved/Petitions/PE01651   

Please tell them about your problems taking and withdrawing from antidepressants and/or benzos.

Send by email to petitions@parliament.scot and quote PE01651 in the subject heading. Keep to a maximum of 3 sides of A4 and you can't name for legal reasons any doctor you have consulted. Tell them if you wish to remain anonymous. We need the numbers to help convince the committee members we are not isolated cases. You have until mid February. Thank you

Recovering paxil addict

None of the published articles shed light on what ssri's ... actually do or what their hazards might be. Healy 2013. 

This is so true, with anything you get on these drugs, dependance, tapering, withdrawal symptoms, side effects, just silent. And if there is something mentioned then their is a serious disconnect between what is said and reality! 

  "Every time I read of a multi-person shooting, I always presume that person had just started a SSRI or had just stopped."  Dr Mosher. Me too! 

Over two decades later, the number of antidepressant prescriptions a year is slightly more than the number of people in the Western world. Most (nine out of 10) prescriptions are for patients who faced difficulties on stopping, equating to about a tenth of the population. These patients are often advised to continue treatment because their difficulties indicate they need ongoing treatment, just as a person with diabetes needs insulin. Healy 2015

I believe the ssri era will soon stand as one of the most shameful in the history of medicine. Healy 2015

Let people help people ... in a natural, kind, non-addictive (and non-big pharma) way. J Broadley 2017

 

 

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Wow talk about a 'road block' at sa.... you sure did a massive one.

 

Great job.

Thought for the day: Lets stand up, and let’s speak out , together. G Olsen

We have until the 14th. Feb 2018. 

URGENT REQUEST Please consider submitting  for the petition on Prescribed Drug Dependence and Withdrawal currently awaiting its third consideration at the Scottish Parliament. You don't even have to be from Scotland. By clicking on the link below you can read some of the previous submissions but be warned many of them are quite harrowing.

http://www.parliament.scot/GettingInvolved/Petitions/PE01651   

Please tell them about your problems taking and withdrawing from antidepressants and/or benzos.

Send by email to petitions@parliament.scot and quote PE01651 in the subject heading. Keep to a maximum of 3 sides of A4 and you can't name for legal reasons any doctor you have consulted. Tell them if you wish to remain anonymous. We need the numbers to help convince the committee members we are not isolated cases. You have until mid February. Thank you

Recovering paxil addict

None of the published articles shed light on what ssri's ... actually do or what their hazards might be. Healy 2013. 

This is so true, with anything you get on these drugs, dependance, tapering, withdrawal symptoms, side effects, just silent. And if there is something mentioned then their is a serious disconnect between what is said and reality! 

  "Every time I read of a multi-person shooting, I always presume that person had just started a SSRI or had just stopped."  Dr Mosher. Me too! 

Over two decades later, the number of antidepressant prescriptions a year is slightly more than the number of people in the Western world. Most (nine out of 10) prescriptions are for patients who faced difficulties on stopping, equating to about a tenth of the population. These patients are often advised to continue treatment because their difficulties indicate they need ongoing treatment, just as a person with diabetes needs insulin. Healy 2015

I believe the ssri era will soon stand as one of the most shameful in the history of medicine. Healy 2015

Let people help people ... in a natural, kind, non-addictive (and non-big pharma) way. J Broadley 2017

 

 

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Wiggle I'm sorry to hear of your recent setback but just thrilled to hear of the lawsuit.  Are you sleeping better now?  I have gone whole nights without sleep as well, please don't worry too much, I know how hard it is but in the many years I've been around forums like this I've never once heard of anyone affected by drugs of any sort permanently losing their ability to get to sleep.

I am not a medical professional and nothing I say is a medical opinion or meant to be medical advice, please seek a competent and trusted medical professional to consult for all medical decisions.

 

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  • Moderator Emeritus

Hey Wiggleit - just want to let you know I'm thinking of you.

 

I hope that you are doing better and not posting (instead of the other possibilities)

 

Really, Alto took 8 years before she would say "yes, I'm recovered." Granted, you have suffered so much, it's not fair to compare, but you know what I mean.

 

Be patient and kind to yourself.  This is the clearest path to making peace with whatever you are given.  Oh, I don't deny you your anger, you have every right to that.  But save your anger for the ones who did this to you.  Be kind and gentle - and patient - with yourself.

 

I hope you see the sun today!

"Easy, easy - just go easy and you'll finish." - Hawaiian Kapuna

 

Holding is hard work, holding is a blessing. Give your brain time to heal before you try again.

 

My suggestions are not medical advice, you are in charge of your own medical choices.

 

A lifetime of being prescribed antidepressants that caused problems (30 years in total). At age 35 flipped to "bipolar," but was not diagnosed for 5 years. Started my journey in Midwest United States. Crossed the Pacific for love and hope; currently living in Australia.   CT Seroquel 25 mg some time in 2013.   Tapered Reboxetine 4 mg Oct 2013 to Sept 2014 = GONE (3 years on Reboxetine).     Tapered Lithium 900 to 475 MG (alternating with the SNRI) Jan 2014 - Nov 2014, tapered Lithium 475 mg Jan 2015 -  Feb 2016 = GONE (10 years  on Lithium).  Many mistakes in dry cutting dosages were made.


The tedious thread (my intro):  JanCarol ☼ Reboxetine first, then Lithium

The happy thread (my success story):  JanCarol - Undiagnosed  Off all bipolar drugs

My own blog:  https://shamanexplorations.com/shamans-blog/

 

 

I have been psych drug FREE since 1 Feb 2016!

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An update for my dear friends:

 

I am doing worse. The tardive dystonia/dyskinesia in my face has worsened. It's worse than it was after my original cold turkey.

 

In fact, most of the improvements I experienced slowly over the past two years are gone. I am back to being mostly bedridden in a dark, quiet room while my face and body tic and twitch for 90-98% of the day.

 

Vocabulary recall has become difficult again, and my speech has slowed down again.

 

The regression began happening at 20 months off. Then, it worsened EVEN MORE at 22 months off.

 

In case people are wondering, it's important to note that I do my best with a healthy diet. I don't smoke anything at all, don't drink at all, and don't touch caffeine at all. I do everything right to take care of myself, and my tardive dystonia and dyskinesia have been permanent. I think it's important to emphasize that, not so that people get discouraged, but so that a record exists of the brutal crime caused by these medications, so that people know permanent damage DOES occur.

 

My face twitches all the time and I obviously can't drive anymore, which was a skill I was SO happy I had regained. Now, it's gone again.

 

No recovery story here.

*I'm not a doctor and don't give medical advice, just personal experience
**Off all meds since Nov. 2014. Mentally & emotionally recovered; physically not
-Dual cold turkeys off TCA & Ativan in Oct 2014. Prescribed from 2011-2014

-All meds were Rxed off-label for an autoimmune illness.  It was a MISDIAGNOSIS, but I did not find out until AFTER meds caused damage.  All med tapers/cold turkeys directed by doctors 

-Nortriptyline May 2012 - Dec 2013. Cold turkey off nortrip & cold switched to desipramine

-Desipramine Jan 2014 - Oct. 29, 2014 (rapid taper/cold turkey)

-Lorazepam 1 mg per night during 2011
-Lorazepam 1 mg per month in 2012 (or less)

-Lorazepam on & off, Dec 2013 through Aug 2014. Didn't exceed 3x a week

-Lorazepam again in Oct. 2014 to help get off of desipramine. Last dose lzpam was 1 mg, Nov. 2, 2014. Immediate paradoxical reactions to benzos after stopping TCAs 

-First muscle/dystonia side effects started on nortriptyline, but docs too stupid to figure it out. On desipramine, muscle tremors & rigidity worsened

-Two weeks after I got off all meds, I developed full-blown TD.  Tardive dystonia, dyskinesia, myoclonic jerks ALL over body, ribcage wiggles, facial tics, twitching tongue & fingers, tremors/twitches of arms, legs, cognitive impairment, throat muscles semi-paralyzed & unable to swallow solid food, brain zaps, ears ring, dizzy, everything looks too far away, insomnia, numbness & electric shocks everywhere when I try to fall asleep, jerk awake from sleep with big, gasping breaths, wake with terrors & tremors, severely depressed.  NO HISTORY OF DEPRESSION, EVER. Meds CREATED it.

-Month 7: hair falling out; no vision improvement; still tardive dystonia; facial & tongue tics returned
-Month 8: back to acute, incl. Grand Mal seizure-like episodes. New mental torment, PGAD, worse insomnia
-Month 9: tardive dystonia worse, dyskinesia returned. Unable to breathe well due to dystonia in stomach, chest, throat
-Month 13: Back to acute, brain zaps back, developed eczema & stomach problems. Left leg no longer works right due to dystonia, meaning both legs now damaged
-7 years off: Huge improvements, incl. improved dystonia

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Sorry this has reappeared and/or worsened for you.  If you experienced an extended window without these symptoms, it is very likely that you will again. The CNS recovers in mysterious and often inconvenient ways.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.
1997-1999 Effexor; 2002-2005 Effexor XR 37.5 mg linear taper, dropping same #beads/week with bad results

Cymbalta 60 mg 2012 - 2015; 2016: 20 mg to 7 mg exact doses and dates in this post; 2017: 6.3 mg to  0.0 mg  Aug. 12; details here


scallywag's Introduction
Online spreadsheet for dose taper calculations and nz11's THE WORKS spreadsheet

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  • Moderator Emeritus

That's not how dystonia works. In every single Dystonia support group, in person AND online, Dystonia patients all get progressively worse with time. Even in the cases were remission has happened, even when the remission has lasted years, the dystonia always returns and usually worse. I've talked to people whose Dystonia has remitted for 14 years, for 20 years... only to return worse.

 

I think we need to stop propagating the myth that dystonia and dyskinesia are just a waiting game until they eventually heal. I realize we have people here who are looking for recovery and for hope, but we also face a larger problem that if we in our own community keep spreading the myth that medication-induced movement disorders all receiver, then we are misleading people and we are lying. All we're doing is helping the warnings about antidepressants to not be taken seriously.

 

I really hope no newbies see my thread, especially no newbies with TD.

 

Thank you for your sweet words and support, scallywag. I'm not trying to turn away your support. I'm simply addressing the reality that NOBODY wants to talk about, not even here on this site. Although, this site is a support group, so I understand the goals are different from, for example, Mad in America.

*I'm not a doctor and don't give medical advice, just personal experience
**Off all meds since Nov. 2014. Mentally & emotionally recovered; physically not
-Dual cold turkeys off TCA & Ativan in Oct 2014. Prescribed from 2011-2014

-All meds were Rxed off-label for an autoimmune illness.  It was a MISDIAGNOSIS, but I did not find out until AFTER meds caused damage.  All med tapers/cold turkeys directed by doctors 

-Nortriptyline May 2012 - Dec 2013. Cold turkey off nortrip & cold switched to desipramine

-Desipramine Jan 2014 - Oct. 29, 2014 (rapid taper/cold turkey)

-Lorazepam 1 mg per night during 2011
-Lorazepam 1 mg per month in 2012 (or less)

-Lorazepam on & off, Dec 2013 through Aug 2014. Didn't exceed 3x a week

-Lorazepam again in Oct. 2014 to help get off of desipramine. Last dose lzpam was 1 mg, Nov. 2, 2014. Immediate paradoxical reactions to benzos after stopping TCAs 

-First muscle/dystonia side effects started on nortriptyline, but docs too stupid to figure it out. On desipramine, muscle tremors & rigidity worsened

-Two weeks after I got off all meds, I developed full-blown TD.  Tardive dystonia, dyskinesia, myoclonic jerks ALL over body, ribcage wiggles, facial tics, twitching tongue & fingers, tremors/twitches of arms, legs, cognitive impairment, throat muscles semi-paralyzed & unable to swallow solid food, brain zaps, ears ring, dizzy, everything looks too far away, insomnia, numbness & electric shocks everywhere when I try to fall asleep, jerk awake from sleep with big, gasping breaths, wake with terrors & tremors, severely depressed.  NO HISTORY OF DEPRESSION, EVER. Meds CREATED it.

-Month 7: hair falling out; no vision improvement; still tardive dystonia; facial & tongue tics returned
-Month 8: back to acute, incl. Grand Mal seizure-like episodes. New mental torment, PGAD, worse insomnia
-Month 9: tardive dystonia worse, dyskinesia returned. Unable to breathe well due to dystonia in stomach, chest, throat
-Month 13: Back to acute, brain zaps back, developed eczema & stomach problems. Left leg no longer works right due to dystonia, meaning both legs now damaged
-7 years off: Huge improvements, incl. improved dystonia

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