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WiggleIt: tardive dyskinesia from TCAs and benzo rapid tapers


WiggleIt

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So sorry you're going through this, Wiggle. I do believe you will heal, in time. Unfortunately, nothing ever happens as quickly as we would like :( Praying for healing and peace.

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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  • Moderator Emeritus

Oh, God, I am now getting tongue zaps, as if eating weren't enough of a problem already.

**I'm not a doctor and don't give medical advice, merely 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
-4 years off: Huge improvements, incl. improved dystonia

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  • Moderator Emeritus

Please, please help me.

**I'm not a doctor and don't give medical advice, merely 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
-4 years off: Huge improvements, incl. improved dystonia

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I also got the tongue zaps. I'm sorry you're experiencing this. Think of it as your body adjusting and making its best to find balance again. 

-Effexor 150 mgs (2001-2009). Severe withdrawal symptoms during and after tapering for 6 months.  

-Pristiq 50 mg (2009-2012) Tapered over a year. Worst year of my life. 

-Prozac 20 mg (2012) Tapered over 6 moths to ease withdrawal. Still had severe WD symptoms. 

- (2012-2014) Doctor tried more than 20 medications for depression and WD, leaving me hypersensitive, and in protracted withdrawal. 

- Most debilitating symptoms during protracted withdrawal have been deep depression, anxiety, brain zaps, fatigue, akathisia, twitching, headaches and terrible PMS. 

-January 2015: Started Lamictal 12.5 mg, increased to 25 mg.- Bad reaction when updosed to 50 mg. Stopped. 

-February 2015: Doctor tried new antidepressant Brintellix - Horrible reaction. Discontinued completely. Severe AKATHISIA started.

-March 2015:  Started TMS therapy (Transcranial magnetic stimulation) for severe depression. Didn't work. 

-July 23-August 12: Had 10 ECT sessions which took away my protracted withdrawal symptoms including: akathisia, brain zaps, muscle twitches, fatigue and depression. Stopped medications. 

-September 2015: Experiencing bouts of depression again and muscle twitching. 

-March 2016: Started 20 mg Nortryptiline for depression. It helped. 

-August 2016: Slowly tapering Nortryptiline. 

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Wildflower0214

Oh, God, I am now getting tongue zaps, as if eating weren't enough of a problem already.

I've had these and lip zaps. They fade :)

2005-Zoloft bad reaction.....2006-Lexepro......2012-Upped Lexepro.......2013-Upped Lexepro......2/2014- Attempted Taper Lexepro...2/2014- Updosed Lexepro.......3/2014-Ativan.....5/2014- CT switch from Lexpro to Effexor.....

5/2014-7/2014-Tapered Ativan from 1mg to .25mg.....6/2014-Bad reaction to Effexor........7/2014- Rapid taper Effexor every other day......7/5/2014- Off Effexor.......7/2014-12/2014 - Ativan .25mg.......12/25/2014 -Taper Ativan by 4% due to paradoxical reaction .24mg...11/18/2015-Taper Ativan 1% CURRENTLY ON: .2376mg Ativan taken in 6 .0396mg doses.

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  • Moderator Emeritus

So I guess throat zaps will fade, too? Throat zaps started up right after tongue zaps, along with what feels like spasming all the way down as my liquid food goes down.

 

Oh, you are my girls.

 

I am in the emergency room. Breathing and swallowing got worse today than they have been in a while. I may have to switch back to thinner liquids for a while.

**I'm not a doctor and don't give medical advice, merely 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
-4 years off: Huge improvements, incl. improved dystonia

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Wildflower0214

So I guess throat zaps will fade, too? Throat zaps started up right after tongue zaps, along with what feels like spasming all the way down as my liquid food goes down.

 

Oh, you are my girls.

 

I am in the emergency room. Breathing and swallowing got worse today than they have been in a while. I may have to switch back to thinner liquids for a while.

It will all fade. I ended up in the emergency room so many times they knew me. Lol it will pass. I hope u don't have to wait to long. :(

 

This is a rough estimate, as I didn't keep count, but I would say Ive been there 10-12 times since last spring.

2005-Zoloft bad reaction.....2006-Lexepro......2012-Upped Lexepro.......2013-Upped Lexepro......2/2014- Attempted Taper Lexepro...2/2014- Updosed Lexepro.......3/2014-Ativan.....5/2014- CT switch from Lexpro to Effexor.....

5/2014-7/2014-Tapered Ativan from 1mg to .25mg.....6/2014-Bad reaction to Effexor........7/2014- Rapid taper Effexor every other day......7/5/2014- Off Effexor.......7/2014-12/2014 - Ativan .25mg.......12/25/2014 -Taper Ativan by 4% due to paradoxical reaction .24mg...11/18/2015-Taper Ativan 1% CURRENTLY ON: .2376mg Ativan taken in 6 .0396mg doses.

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  • Moderator Emeritus

Hi Wigglelt,

 

It's been a while since I corresponded with you as have been isolating a bit, needed a break as one can be completely absorbed by the WD process, and migrated here from Paxil Progress after it closed, and for which I felt some responsibility (read guilt), and which I''m now over and feeling much more comfortable here.

 

I noticed you again in the 'Introduction' section, and remembered that you believed you had tardive dyskenesia, just like me.

I also believe that I suffered some form of dystonia, where my right arm would involuntarily place itself behind my neck, I had no control over it.

 

I also had an involuntary movement of my right hand that had my hand constantly go to my lips and mouth. I had no control over that either. My right leg dragged behind me, and often as not I could barely drag myself around my flat (apartment). All of

the jerks, twitches, tingles, face muscles drooping like a bloodhound, and all of the other symptoms that Brassmonkey describes as WDNormal ere present and very frightening and like you thought I was a worst case scenario and that I would never recover.

 

Like you, I am in a conundrum (diferential diagnosis) in that when my psychiatrist switched me from Mirtazapine to Lexepro I got Serotonin Syndrome very, badly and thought I was going to die, and death didn't seem like too bad an option at that point. I had a seizure during sleep as woke up on the floor with a graze from by bedside table and a badly bitten tongue. It was hell on wheels. :angry:

 

I don't know whether the TD (which I now have control over) or the dystonia (gone now) were caused by having Serotonin Syndrome or the switch to Lexepro. In the end I gave up trying to work it out, and just believed everyone here that it would get

better, and it has........heaps better. :)

 

Now that I am down in the lower ranges of Mirtazapine I have noticed that the TD (tongue, lips, etc.) have reappeared, but not so nearly as bad as when I was acute. The dystonia, has disappeared.

 

I was also not measuring my cuts in the pills accurately enough :blush:, and am now having my pills compunded by the local pharmacist. Wish you lived in Australia, our health system seems so much better and more accessible. I pity the poor innocents who live in countries where life is cheap. :angry:

 

Just wanted to make contact Wigglelt as I can tell you are suffering and I remember it well, 18 months back.

 

I am not a religious person, just a simple humanist who cares about the world and its people's. I care that this is happening to you and wish that it were not, but them's the breaks in the big city, hey? No way 'round it but through it.

 

I cannot tell whether you, I or anyone else will completely recover, I just know that people do, and their stories are there to read.

 

I can say with certainty that I have improved markedly since when it was hell, and I use this as my guage in anticipating full recovery.

 

I read your posts from start to finish, and though I don't know what is happening for you today (see Rubik's cube) :unsure:, but overall your posts seem to indicate a slow but positive improvement, and we need to be grateful for small mercies, hey?

 

Thinking of you, and hoping that today Rubik is just a few turns away from coming up trumps.

 

No wigging out Wigglelt :wub:

 

As always ....... steeley

Steeley, you are sweet. As you can see turn of bad luck today.

**I'm not a doctor and don't give medical advice, merely 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
-4 years off: Huge improvements, incl. improved dystonia

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WI sorry you had to go to emerge, I hope you are okay. 

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

I also got the tongue zaps. I'm sorry you're experiencing this. Think of it as your body adjusting and making its best to find balance again.

Cdav, thanks. I just wrote you an email.

**I'm not a doctor and don't give medical advice, merely 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
-4 years off: Huge improvements, incl. improved dystonia

Link to post

Thank you Wiggle, I wrote you back. 

 

I'm sorry you had to go to the emergency room. Before I understood what was happening to me I was about to enter a psychiatric hospital several times, but thank God I didn't! 

 

All of this will fade, as JDM1984 said. 

-Effexor 150 mgs (2001-2009). Severe withdrawal symptoms during and after tapering for 6 months.  

-Pristiq 50 mg (2009-2012) Tapered over a year. Worst year of my life. 

-Prozac 20 mg (2012) Tapered over 6 moths to ease withdrawal. Still had severe WD symptoms. 

- (2012-2014) Doctor tried more than 20 medications for depression and WD, leaving me hypersensitive, and in protracted withdrawal. 

- Most debilitating symptoms during protracted withdrawal have been deep depression, anxiety, brain zaps, fatigue, akathisia, twitching, headaches and terrible PMS. 

-January 2015: Started Lamictal 12.5 mg, increased to 25 mg.- Bad reaction when updosed to 50 mg. Stopped. 

-February 2015: Doctor tried new antidepressant Brintellix - Horrible reaction. Discontinued completely. Severe AKATHISIA started.

-March 2015:  Started TMS therapy (Transcranial magnetic stimulation) for severe depression. Didn't work. 

-July 23-August 12: Had 10 ECT sessions which took away my protracted withdrawal symptoms including: akathisia, brain zaps, muscle twitches, fatigue and depression. Stopped medications. 

-September 2015: Experiencing bouts of depression again and muscle twitching. 

-March 2016: Started 20 mg Nortryptiline for depression. It helped. 

-August 2016: Slowly tapering Nortryptiline. 

Link to post
  • Moderator Emeritus

WI sorry you had to go to emerge, I hope you are okay.

I am terrified, but alive. Thank you, Sky.

**I'm not a doctor and don't give medical advice, merely 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
-4 years off: Huge improvements, incl. improved dystonia

Link to post
  • Moderator Emeritus

So many thanks to everybody who stopped by my thread to encourage me during this very bad wave. I am sorry I have not yet responded to each of you individually, or if I have not yet stopped by your thread to check on you. I promise I will catch up soon as I am a little stronger and lend back the support to all of you that you have to me.

**I'm not a doctor and don't give medical advice, merely 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
-4 years off: Huge improvements, incl. improved dystonia

Link to post

 

WI sorry you had to go to emerge, I hope you are okay.

I am terrified, but alive. Thank you, Sky.

 

 

I am glad you are still here, I was worried when I read you had to go to emerge.  I wish there was something I could do to make it stop for you.  It's more than anyone should have to deal with.  I hope things settle tonight and will be thinking of you, praying this lifts soon. 

 

And don't worry about getting back to people, I am sure it's understood that people can't always respond right away, your health is the most important thing.  Take all the time you need.

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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have you seen a doctor that might help ?

you should keep looking for safe ways to heal

''I''took paxil for 30 days (did`nt felt  a lot of side effects when ''I'' stopped it)

after two weeks I developed the worst headache I ever felt (some sort of permanent migraine, tinnitus..).

after a month of headaches a decided to take another pill to see.I took a pill because i was thinking that it  was may be withdrawal and it caused me a what my doctor called `some thing like serotonin syndrome`` which never improved and caused me severe muscle problems...

in retrospect I know that it was not a serotonin syndrome , my receptor were very stimulated and reacted in weird ways

 

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  • Moderator Emeritus

I have an upcoming appt with a neurologist and I think I may have just found a holistic psychiatrist today, but I need to call the office back tomorrow.

**I'm not a doctor and don't give medical advice, merely 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
-4 years off: Huge improvements, incl. improved dystonia

Link to post

Wiggle, hope you are a bit better today. So sorry you had to go to Emergency. Praying you can find some peace and a bit of a break soon. You so deserve it.

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)

Link to post

Hi Wiggle, Just wanted to say I'm thinking of you and crossing my fingers your night tonight is a relaxing one free of symptoms and worry. 

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.

 

Link to post
  • Moderator Emeritus

I just got off the phone with an old friend of mine who used to be a coke-head and a drunk for many, many years.  He's fine.  I didn't do anything wrong, and I'm now handicapped.

 

IT'S NOT F****** FAIR.  IT'S NOT FAIR.  I DIDN'T DO ANYTHING WRONG.

**I'm not a doctor and don't give medical advice, merely 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
-4 years off: Huge improvements, incl. improved dystonia

Link to post

I know WI, I've had that happen too. I didn't use street drugs and have met people who did who are infinitely better off. 

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.

 

Link to post

I think the pharmaceutical companies outstrip the ilicit drug market by a zillion to one. :angry:  

 

Hope you are feeling better Wigglelt  This has been a very tough time for you, and admire your courage even if you are scared s***less.  It is very scarey I know.

 

Keep batting Wigglelt, not feeling too good myself today.  What's a girl to do?  Feel like crying.

 

As always ....... steeley  .

Prescribed 30mg Mirtazapine approximately 10 years ago.  PTSD 

 

C/T 50% of dose - dreadful, hellish

Begin to reduce by 10% every 3-6 weeks

now:

5.11.14 4.50mg - going to wait a bit longer

Link to post
Wildflower0214

I wish I would have smoked pot and drank occasionally. I would be better off.

2005-Zoloft bad reaction.....2006-Lexepro......2012-Upped Lexepro.......2013-Upped Lexepro......2/2014- Attempted Taper Lexepro...2/2014- Updosed Lexepro.......3/2014-Ativan.....5/2014- CT switch from Lexpro to Effexor.....

5/2014-7/2014-Tapered Ativan from 1mg to .25mg.....6/2014-Bad reaction to Effexor........7/2014- Rapid taper Effexor every other day......7/5/2014- Off Effexor.......7/2014-12/2014 - Ativan .25mg.......12/25/2014 -Taper Ativan by 4% due to paradoxical reaction .24mg...11/18/2015-Taper Ativan 1% CURRENTLY ON: .2376mg Ativan taken in 6 .0396mg doses.

Link to post
Wildflower0214

Also, hard realization, but necessary.... Life is not fair. This is not fair. Nothing is. I have had grace throughout my life I never deserved. I don't deserve this. But, it is.

 

I sound like a downer. I'm sorry, I think I'm depressed. :(

 

It isn't fair Wiggle. I have come to a place where I don't expect fair. I expect miracles, struggling to endure, healing through brokenness, sanctification, trials, joy and pain. I expect the unfair. I expect grace abundant, enough to get me through the hardest times.

 

This may make no sense. I'm tired.

 

Thinking of u, and I empathize with your anger.

2005-Zoloft bad reaction.....2006-Lexepro......2012-Upped Lexepro.......2013-Upped Lexepro......2/2014- Attempted Taper Lexepro...2/2014- Updosed Lexepro.......3/2014-Ativan.....5/2014- CT switch from Lexpro to Effexor.....

5/2014-7/2014-Tapered Ativan from 1mg to .25mg.....6/2014-Bad reaction to Effexor........7/2014- Rapid taper Effexor every other day......7/5/2014- Off Effexor.......7/2014-12/2014 - Ativan .25mg.......12/25/2014 -Taper Ativan by 4% due to paradoxical reaction .24mg...11/18/2015-Taper Ativan 1% CURRENTLY ON: .2376mg Ativan taken in 6 .0396mg doses.

Link to post
  • Mentor

 

JDM I AM GRUMPY CAT! BAHAHAHA!

:P

 

Well so glad I have a supportive son, he had to take grumpy cat to the vet, grumpy cat apparently been in a fight, sorry for being off topic, just so grateful for having someone take a grumpy cat to vet for me!  Grumpy cat got a disgustingly sore ear.   Damnit $110 dollars later.....  hope i will be able to leave the house one day shortly!

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.

Link to post
  • Mentor

And hello Wigglet, I am sure your have written on my thread.  wishing you big hugs.  i also am angry, never smoked, did drugs, was convinced by my sister that there is a big difference between "self prescribed" ie illegal drugs, and those prescribed.  

Now i find out my drug effexor is number 2 on the most addictive list, and valium number 13.  Yes we been conned. But you sound so strong.  I havent had many of your symptoms, but I have had so, so many others.  I didn't know, but I been thru this WD thing about four times now......  never again..... never again.....this time no more drugs to cover withdrawals......(tried reinstating, but was too late)....   I know better now?  I hope.  Thanks to the lovely people here, fellow sufferers on this site. If it takes four years, so be it.  At least I have my financial brain back, the one I lost for ten years.

Anyway.... thankyou for writing on my thread and supporting me.

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.

Link to post

Wiggle--Definitely understand your frustration. Don't drink--never did--don't smoke or use any kind of drugs (never even tried pot). All I did was trust the doctor who suggested Zoloft for my Chronic Fatigue, and the three since who just kept prescribing it without telling me the truth.

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)

Link to post
  • Moderator Emeritus

My swallowing that had gotten SLIGHTLY better (so that I could eat scrambled egg and mashed avocado) has completely gotten worse again and I'm back to strictly all liquid. I wish I were f****** dead.

**I'm not a doctor and don't give medical advice, merely 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
-4 years off: Huge improvements, incl. improved dystonia

Link to post

I'm so sorry, sweetie. Try to hang in there. It will get better. Praying!!

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)

Link to post
  • Moderator Emeritus

All I want in the whole world is to be healthy again... to have a chance to work at the physical therapy for my original injury.

**I'm not a doctor and don't give medical advice, merely 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
-4 years off: Huge improvements, incl. improved dystonia

Link to post

What can I say Wigglelt except to hang in and hold blind faith.

 

There is no justice only poetic justice, and one day the poet will expose the pharmaceuticals.

 

I am so sorry this is happening to you. 

 

steeley

Prescribed 30mg Mirtazapine approximately 10 years ago.  PTSD 

 

C/T 50% of dose - dreadful, hellish

Begin to reduce by 10% every 3-6 weeks

now:

5.11.14 4.50mg - going to wait a bit longer

Link to post

WiggleIt, I'm so sorry about your swallowing wave coming back. 

 

Please don't wish you were dead. I know this feeling is almost impossible not not be felt. But you are very important to this world. You will be yourself again. Keep remembering the person you were before WD, because you will be that person again. Don't lose sight of that. 

 

Write down what recovery will be like, and read it every day. I'm doing that, and it really brings hope to visualise a better future. 

-Effexor 150 mgs (2001-2009). Severe withdrawal symptoms during and after tapering for 6 months.  

-Pristiq 50 mg (2009-2012) Tapered over a year. Worst year of my life. 

-Prozac 20 mg (2012) Tapered over 6 moths to ease withdrawal. Still had severe WD symptoms. 

- (2012-2014) Doctor tried more than 20 medications for depression and WD, leaving me hypersensitive, and in protracted withdrawal. 

- Most debilitating symptoms during protracted withdrawal have been deep depression, anxiety, brain zaps, fatigue, akathisia, twitching, headaches and terrible PMS. 

-January 2015: Started Lamictal 12.5 mg, increased to 25 mg.- Bad reaction when updosed to 50 mg. Stopped. 

-February 2015: Doctor tried new antidepressant Brintellix - Horrible reaction. Discontinued completely. Severe AKATHISIA started.

-March 2015:  Started TMS therapy (Transcranial magnetic stimulation) for severe depression. Didn't work. 

-July 23-August 12: Had 10 ECT sessions which took away my protracted withdrawal symptoms including: akathisia, brain zaps, muscle twitches, fatigue and depression. Stopped medications. 

-September 2015: Experiencing bouts of depression again and muscle twitching. 

-March 2016: Started 20 mg Nortryptiline for depression. It helped. 

-August 2016: Slowly tapering Nortryptiline. 

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  • Moderator Emeritus

I read something somewhere else on the site where one member speculated that it seems to take people with physical symptoms much, much longer to recover than people with psychological symptoms.

 

That really terrified me, because I am doing so poorly in terms of physical symptoms. Is this observation true that the other member made?

**I'm not a doctor and don't give medical advice, merely 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
-4 years off: Huge improvements, incl. improved dystonia

Link to post
Wildflower0214

I have not seen any evidence to prove this. Everyone seems to be different, and their rate of healing is different and involves many factors. I don't think there is a reason to believe that. How are u?

2005-Zoloft bad reaction.....2006-Lexepro......2012-Upped Lexepro.......2013-Upped Lexepro......2/2014- Attempted Taper Lexepro...2/2014- Updosed Lexepro.......3/2014-Ativan.....5/2014- CT switch from Lexpro to Effexor.....

5/2014-7/2014-Tapered Ativan from 1mg to .25mg.....6/2014-Bad reaction to Effexor........7/2014- Rapid taper Effexor every other day......7/5/2014- Off Effexor.......7/2014-12/2014 - Ativan .25mg.......12/25/2014 -Taper Ativan by 4% due to paradoxical reaction .24mg...11/18/2015-Taper Ativan 1% CURRENTLY ON: .2376mg Ativan taken in 6 .0396mg doses.

Link to post

I read something somewhere else on the site where one member speculated that it seems to take people with physical symptoms much, much longer to recover than people with psychological symptoms.

 

That really terrified me, because I am doing so poorly in terms of physical symptoms. Is this observation true that the other member made?

 

Hi WI, I responded on that thread but will put this here too.

 

I've known people who had issues such as are listed in that thread who recovered quickly.

 

For instance someone I know had zaps and they were gone in a month and they were fine.

 

Another person I know had a really severe dyskinesia reaction while on a drug and stopped the drug and it ended.

 

Keep in mind, if a person has a physical issue that is caused by a drug often doctors aren't going to say the drug is to blame.  So they are likely to go through the standard testing to eliminate other causes and some aren't going to realize a drug caused their problems so they aren't going to even bother looking for us.  If it clears up during that time there is no need for them to research further--and a doctor could likely just claim it was something else and that it went away so not to worry.  So point being we may not be that likely to get people here whose issues clear up quickly.

 

We are a biased sample, there is no way to draw a full rounded picture of what the drugs are doing from this site alone. 

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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I hope that makes sense, I am a bit spaced out at the moment.  And I hope your night is going okay. 

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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Wildflower0214

I'm just stopping by to tell you YOU ARE GOING TO GET BETTER!!!

 

And to share cake. :) ????

 

Also, I'm in a stage in WD where everything gets stuck in my head for days. Wiggle It is now officially the theme song of my thought life. Lol. It's a bit a bizarre situation when that song will be on replay, and then I get a random intrusive thought like..."I wonder what would happen if I pushed my shopping cart into that huge shampoo display?"

2005-Zoloft bad reaction.....2006-Lexepro......2012-Upped Lexepro.......2013-Upped Lexepro......2/2014- Attempted Taper Lexepro...2/2014- Updosed Lexepro.......3/2014-Ativan.....5/2014- CT switch from Lexpro to Effexor.....

5/2014-7/2014-Tapered Ativan from 1mg to .25mg.....6/2014-Bad reaction to Effexor........7/2014- Rapid taper Effexor every other day......7/5/2014- Off Effexor.......7/2014-12/2014 - Ativan .25mg.......12/25/2014 -Taper Ativan by 4% due to paradoxical reaction .24mg...11/18/2015-Taper Ativan 1% CURRENTLY ON: .2376mg Ativan taken in 6 .0396mg doses.

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  • ChessieCat changed the title to WiggleIt: tardive dyskinesia from TCAs and benzo rapid tapers

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