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WiggleIt: tardive dyskinesia from TCAs and benzo rapid tapers


WiggleIt

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Did my reply not post? No, it does not come back now. Not even in withdrawal. I have had tremors with WD, but not the same.

 

((Hugs))

 

Ah... Ok. Yes, my first response did post. I wasn't seeing 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)

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  • Moderator Emeritus

Oh, Knit! Do you have any idea what your responses mean to me???!!! Oh, I love you!

**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

 

 

((((WI)))) I'm CT also. If you and Luv are screwed, then I am too. We are just discouraged and exhausted. Our outlook is bleak because this misery goes on all day and bleeds into the next day. Nobody can tell us how long we have to endure this, so we automatically jump to the worst case scenario: FOREVER! But it will end. One day we will wake up and something will have lifted, or maybe our baseline will have been raised. Maybe it will happen right after a bad wave that brought us to our knees and we thought we couldn't go on another day. The very next day could be the day it happens for all of us. You've got to just push through every day and not buy into the "cr*p" some people post on their blogs. Just because you are honest, it doesn't mean they are, or some people intentionally or unintentionally leave certain facts out of their posts, like other things they are taking, for instance. Don't believe everything you read. Some people seem to have a flair for the dramatic and are insensitive about saying things that might put a nice person like you in the pit of despair. I'm here to tell you that we are ALL going to HEAL 100%, regardless of our ages, or how long we were on the drugs, or the dosages we were on, or how we quit the drugs, or whether we're still on something and tapering. God is with us because we are TRYING. We aren't out driving around high, being a danger to ourselves and others. We are down on our knees begging Him to help us and He's listening. As a matter of fact He's helping us now. We just can't see it because we're still so miserable in our weakened state. Someday God's going to help our bodies take a giant last leap forward and this nightmare will be OVER.

Pug, I am worried that I am becoming one of those people who is so negative that nobody will want to read my posts anymore. I worry that I am turning into one of the types of cases who scares others.

 

I would never, ever want to hurt others by talking about my own despair. I just don't know what to do with my own despair. And I sure as hell don't know what to do when the Big Wiggles happen. They happened yesterday.

I'm sure my thread scares the crap out of most people.. But, I can't help that. And, I try to tell the good with the bad. I list improvements every couple of months. If I can't dump my emotions here, where can I? Don't you worry about it. Just keep talking and documenting. No one has to read if they don't want to.

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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Oh, Knit! Do you have any idea what your responses mean to me???!!! Oh, I love you!

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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Yep--pretty good idea! Love you too!

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))). I don't find you to be negative at all. I have a lot in common with your emotional state, looking for answers, searching for hope. I'm especially where you are right now. We are probably at a similar spot in the recovery process and our emotions are getting the better of us. Maybe we're closer to the end than we think.

January 2012 - Prescribed 900mg gabapentin and 30mg Norco for lower lumber spinal stenosis pain.

September 2013 - Spinal fusion surgery, 6 levels. Hospital ramped up meds 1500mg gabapentin, 100mg Norco, 80mg Oxycontin, 25mg Fentanyl patch.

January 2014 - Sever nausea daily and with back pain every 4 hours. 2 trips to ER. First endoscopy found ulcer. Treated with Sucralfate and PPI. Second endo in May found no ulcers. Doctors said it was the opiates causing the nausea. CT'd Oxycontin, Fentanyl patch.

July 2014 - Lost 48 lbs. due to not eating because of severe nausea. GP prescribed Prozac 20mg and Ativan 2mg prn. Tried for 4 days, quit. Two week followup GP said keep taking Prozac. 4 days, quit again. Ativan taken rarely prn for anxiety and appetite.

August 2014 - Went to detox. Off opiates. Still nauseous, helmet head, drugged feeling. Doctor CT'd gabapentin. Ended up in ER. Found 2 gallstones. Gabapentin reinstated at 900mg. Tried botched up and down taper to get off Gabapentin. No tapering advice from doctor. Said to just CT again.

September 2014 - Coded on table during gallbladder surgery. Developed liver biloma due to CPR by doctor. Had bile bulb inserted for 2 wks to drain.

October 2014 - Gallbladder removed. Still nauseous, 3am cortisol surging, drugged helmet head, vertigo, breathlessness, whooshing head, heart palps.

November 8th, 2014 - CT'd gabapentin suggested by family and 4 different doctors. Was told no withdrawal is associated with gabapentin. Have been in hell ever since. No windows, just one big tsunami every day with same symptoms for 4 months.

December 26, 2014 - Found SA. At least I know I'm not insane. My family thinks I'm doing this to myself. Akathesia has become unbearable.

March 10, 2015 - In absolute daily hell with no relief. Currently taking magnesium 200mg before bedtime.

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  • Moderator Emeritus

Mental and emotional window yesterday and so far today. Physical symptoms moderate. Jerks mild to moderate, no wiggles.

**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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Yayyyyy! WI!

January 2012 - Prescribed 900mg gabapentin and 30mg Norco for lower lumber spinal stenosis pain.

September 2013 - Spinal fusion surgery, 6 levels. Hospital ramped up meds 1500mg gabapentin, 100mg Norco, 80mg Oxycontin, 25mg Fentanyl patch.

January 2014 - Sever nausea daily and with back pain every 4 hours. 2 trips to ER. First endoscopy found ulcer. Treated with Sucralfate and PPI. Second endo in May found no ulcers. Doctors said it was the opiates causing the nausea. CT'd Oxycontin, Fentanyl patch.

July 2014 - Lost 48 lbs. due to not eating because of severe nausea. GP prescribed Prozac 20mg and Ativan 2mg prn. Tried for 4 days, quit. Two week followup GP said keep taking Prozac. 4 days, quit again. Ativan taken rarely prn for anxiety and appetite.

August 2014 - Went to detox. Off opiates. Still nauseous, helmet head, drugged feeling. Doctor CT'd gabapentin. Ended up in ER. Found 2 gallstones. Gabapentin reinstated at 900mg. Tried botched up and down taper to get off Gabapentin. No tapering advice from doctor. Said to just CT again.

September 2014 - Coded on table during gallbladder surgery. Developed liver biloma due to CPR by doctor. Had bile bulb inserted for 2 wks to drain.

October 2014 - Gallbladder removed. Still nauseous, 3am cortisol surging, drugged helmet head, vertigo, breathlessness, whooshing head, heart palps.

November 8th, 2014 - CT'd gabapentin suggested by family and 4 different doctors. Was told no withdrawal is associated with gabapentin. Have been in hell ever since. No windows, just one big tsunami every day with same symptoms for 4 months.

December 26, 2014 - Found SA. At least I know I'm not insane. My family thinks I'm doing this to myself. Akathesia has become unbearable.

March 10, 2015 - In absolute daily hell with no relief. Currently taking magnesium 200mg before bedtime.

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Wildflower0214

Yay! No Wiggles! Whoop!

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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Eeeeeeeeehaaaaaaaaw! Progress is great!

2002-put on amitryptiline for fibromyalgia. 10mg.2004-stopped abruptly. Didn't think it helped.2006 approx.-put on Paxil for mild anxiety 20 mg.2007 upped to 40 mg. not sure why.2011- tapered from 40 to 10. went nuts and went back to 20mg2014- tapered from 20mg to 0 from April to The end of June.current meds- Metformin(type 2 diabetic) and low dose aspirin.Take multi vitamin and vit b12, vit. D and magnesium. 5 months off Paxil. Still suffering.recently added 1.2mg of Paxil to alleviate withdrawals.(Nov 30)Dropped to .9mg because having symptoms from reinstatement.(dec 23)<p>taper to .76mg-.8mg (Feb 3) approx. weight .010 to about .008-.009 on scale.
.6mg (march 19th.) .5mg(April 19th)
.4mg(April 27th)
.2 (June 27th)

0mg.  done taper at beginning of August.

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Wildflower0214

Is that the noise a donkey makes? Eeehawww? That's what I heard, a loud donkey. Lol

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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Yay!!

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

Is that the noise a donkey makes? Eeehawww? That's what I heard, a loud donkey. Lol

Haha I was thinking more of a cowboy eehaw but your version is comical!

2002-put on amitryptiline for fibromyalgia. 10mg.2004-stopped abruptly. Didn't think it helped.2006 approx.-put on Paxil for mild anxiety 20 mg.2007 upped to 40 mg. not sure why.2011- tapered from 40 to 10. went nuts and went back to 20mg2014- tapered from 20mg to 0 from April to The end of June.current meds- Metformin(type 2 diabetic) and low dose aspirin.Take multi vitamin and vit b12, vit. D and magnesium. 5 months off Paxil. Still suffering.recently added 1.2mg of Paxil to alleviate withdrawals.(Nov 30)Dropped to .9mg because having symptoms from reinstatement.(dec 23)<p>taper to .76mg-.8mg (Feb 3) approx. weight .010 to about .008-.009 on scale.
.6mg (march 19th.) .5mg(April 19th)
.4mg(April 27th)
.2 (June 27th)

0mg.  done taper at beginning of August.

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Just want to add here that I had mycologic jerks severely night and day for 6 months from abrupt withdrawal from an SSRI. Then they slowly got better. And I mean s-l--o-w-l-y. Now, 10 years later (I think), I get them randomly and pretty mildly. They are just a nuisance. At the time they were happening, I was just figuring out how old my kids would need to be before I could kill myself. I think that was the sleep deprivation talking. Decent sleep is one of the keys to getting better. If you can't sleep, then rest as much as possible. Time is healer. You will get better. Your life and plans are not over. They are just on hold for a bit. The brain has an amazing ability to heal.

started Xanax in 2014 (summer?)

finished trazodone taper in March

started tapering Xanax in March

max dosage was 2mg

down to 1.5mg divided into 4 fairly even doses

trying dividing X into 6 doses

using liquid form of X

 

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WI, I am so glad to hear you are having a window!  Crossing my fingers it continues indefinitely!

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

It didn't.  Jerks, wiggles, and dystonia still happening with extreme emotion, such as anger, fear, and even with extreme emotional relief.

**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'm so sorry :( ugh. *****. I hope it gets better really really soon.

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

WI, it'll pass. Praying for you.

January 2012 - Prescribed 900mg gabapentin and 30mg Norco for lower lumber spinal stenosis pain.

September 2013 - Spinal fusion surgery, 6 levels. Hospital ramped up meds 1500mg gabapentin, 100mg Norco, 80mg Oxycontin, 25mg Fentanyl patch.

January 2014 - Sever nausea daily and with back pain every 4 hours. 2 trips to ER. First endoscopy found ulcer. Treated with Sucralfate and PPI. Second endo in May found no ulcers. Doctors said it was the opiates causing the nausea. CT'd Oxycontin, Fentanyl patch.

July 2014 - Lost 48 lbs. due to not eating because of severe nausea. GP prescribed Prozac 20mg and Ativan 2mg prn. Tried for 4 days, quit. Two week followup GP said keep taking Prozac. 4 days, quit again. Ativan taken rarely prn for anxiety and appetite.

August 2014 - Went to detox. Off opiates. Still nauseous, helmet head, drugged feeling. Doctor CT'd gabapentin. Ended up in ER. Found 2 gallstones. Gabapentin reinstated at 900mg. Tried botched up and down taper to get off Gabapentin. No tapering advice from doctor. Said to just CT again.

September 2014 - Coded on table during gallbladder surgery. Developed liver biloma due to CPR by doctor. Had bile bulb inserted for 2 wks to drain.

October 2014 - Gallbladder removed. Still nauseous, 3am cortisol surging, drugged helmet head, vertigo, breathlessness, whooshing head, heart palps.

November 8th, 2014 - CT'd gabapentin suggested by family and 4 different doctors. Was told no withdrawal is associated with gabapentin. Have been in hell ever since. No windows, just one big tsunami every day with same symptoms for 4 months.

December 26, 2014 - Found SA. At least I know I'm not insane. My family thinks I'm doing this to myself. Akathesia has become unbearable.

March 10, 2015 - In absolute daily hell with no relief. Currently taking magnesium 200mg before bedtime.

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  • Moderator Emeritus

I had a wiggle recurrence today when I had a feeling of intense emotional relief.  WHY?  WHY?  I used to feel relief, anger, AND fear without wiggling, without my arms curling up.  I used to FEEL.  And now if I feel something, I jerk and wiggle.

 

I want to be ABLE to feel fear and relief and anger without my body doing things involuntarily.  PLEASE PLEASE you guys.  PLEASE.  I can only hold still when I am perfectly calm.  How can I live a life without emotions, because my nervous system has become too damaged to recognize them?  PLEASE HELP ME YOU GUYS.

 

WHY AM I NOT BETTER?

**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)))) I'm feeling the same way right now. I'm scared. This isn't the normal sh**ty. This is sky high acute WD sh**ty. We need to hold onto each other right now. Just pray. It's gonna pass. God please help us now!

January 2012 - Prescribed 900mg gabapentin and 30mg Norco for lower lumber spinal stenosis pain.

September 2013 - Spinal fusion surgery, 6 levels. Hospital ramped up meds 1500mg gabapentin, 100mg Norco, 80mg Oxycontin, 25mg Fentanyl patch.

January 2014 - Sever nausea daily and with back pain every 4 hours. 2 trips to ER. First endoscopy found ulcer. Treated with Sucralfate and PPI. Second endo in May found no ulcers. Doctors said it was the opiates causing the nausea. CT'd Oxycontin, Fentanyl patch.

July 2014 - Lost 48 lbs. due to not eating because of severe nausea. GP prescribed Prozac 20mg and Ativan 2mg prn. Tried for 4 days, quit. Two week followup GP said keep taking Prozac. 4 days, quit again. Ativan taken rarely prn for anxiety and appetite.

August 2014 - Went to detox. Off opiates. Still nauseous, helmet head, drugged feeling. Doctor CT'd gabapentin. Ended up in ER. Found 2 gallstones. Gabapentin reinstated at 900mg. Tried botched up and down taper to get off Gabapentin. No tapering advice from doctor. Said to just CT again.

September 2014 - Coded on table during gallbladder surgery. Developed liver biloma due to CPR by doctor. Had bile bulb inserted for 2 wks to drain.

October 2014 - Gallbladder removed. Still nauseous, 3am cortisol surging, drugged helmet head, vertigo, breathlessness, whooshing head, heart palps.

November 8th, 2014 - CT'd gabapentin suggested by family and 4 different doctors. Was told no withdrawal is associated with gabapentin. Have been in hell ever since. No windows, just one big tsunami every day with same symptoms for 4 months.

December 26, 2014 - Found SA. At least I know I'm not insane. My family thinks I'm doing this to myself. Akathesia has become unbearable.

March 10, 2015 - In absolute daily hell with no relief. Currently taking magnesium 200mg before bedtime.

Link to post

Wiggle, when we feel this bad, a better day is around the corner.

January 2012 - Prescribed 900mg gabapentin and 30mg Norco for lower lumber spinal stenosis pain.

September 2013 - Spinal fusion surgery, 6 levels. Hospital ramped up meds 1500mg gabapentin, 100mg Norco, 80mg Oxycontin, 25mg Fentanyl patch.

January 2014 - Sever nausea daily and with back pain every 4 hours. 2 trips to ER. First endoscopy found ulcer. Treated with Sucralfate and PPI. Second endo in May found no ulcers. Doctors said it was the opiates causing the nausea. CT'd Oxycontin, Fentanyl patch.

July 2014 - Lost 48 lbs. due to not eating because of severe nausea. GP prescribed Prozac 20mg and Ativan 2mg prn. Tried for 4 days, quit. Two week followup GP said keep taking Prozac. 4 days, quit again. Ativan taken rarely prn for anxiety and appetite.

August 2014 - Went to detox. Off opiates. Still nauseous, helmet head, drugged feeling. Doctor CT'd gabapentin. Ended up in ER. Found 2 gallstones. Gabapentin reinstated at 900mg. Tried botched up and down taper to get off Gabapentin. No tapering advice from doctor. Said to just CT again.

September 2014 - Coded on table during gallbladder surgery. Developed liver biloma due to CPR by doctor. Had bile bulb inserted for 2 wks to drain.

October 2014 - Gallbladder removed. Still nauseous, 3am cortisol surging, drugged helmet head, vertigo, breathlessness, whooshing head, heart palps.

November 8th, 2014 - CT'd gabapentin suggested by family and 4 different doctors. Was told no withdrawal is associated with gabapentin. Have been in hell ever since. No windows, just one big tsunami every day with same symptoms for 4 months.

December 26, 2014 - Found SA. At least I know I'm not insane. My family thinks I'm doing this to myself. Akathesia has become unbearable.

March 10, 2015 - In absolute daily hell with no relief. Currently taking magnesium 200mg before bedtime.

Link to post
  • Moderator Emeritus

The thing that surprises me most is that the jerks and wiggles happen with ANY extreme emotion, whether joy, love, relief, fear, or anger. It happens even if my mind wanders too much. Things settle down to about 90% (?) if I remain totally calm and emotionless.

 

I can't even allow myself to laugh too deeply, like not a deep belly laugh, or it will set off jerks and wiggles. For 31 years of my life, I laughed, got scared, felt other feelings and never wiggled or jerked.

 

Please, I am so scared. Please, please, I need to be reminded of who recovered from this.

**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

Just want to add here that I had mycologic jerks severely night and day for 6 months from abrupt withdrawal from an SSRI. Then they slowly got better. And I mean s-l--o-w-l-y. Now, 10 years later (I think), I get them randomly and pretty mildly. They are just a nuisance. At the time they were happening, I was just figuring out how old my kids would need to be before I could kill myself. I think that was the sleep deprivation talking. Decent sleep is one of the keys to getting better. If you can't sleep, then rest as much as possible. Time is healer. You will get better. Your life and plans are not over. They are just on hold for a bit. The brain has an amazing ability to heal.

Did your ribcage ever wiggle?

**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, I'm so sorry. You will be able to feel emotions again without these drastic responses. It just will take time--something we're all sick of hearing. Continued prayers!

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

Knit, I was over on your thread and saw you were having a rough night. I wrote to you, but it looks like it didn't post

**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))) When I get emotionally stressed, all my symptoms ramp up. Viscous circle.

January 2012 - Prescribed 900mg gabapentin and 30mg Norco for lower lumber spinal stenosis pain.

September 2013 - Spinal fusion surgery, 6 levels. Hospital ramped up meds 1500mg gabapentin, 100mg Norco, 80mg Oxycontin, 25mg Fentanyl patch.

January 2014 - Sever nausea daily and with back pain every 4 hours. 2 trips to ER. First endoscopy found ulcer. Treated with Sucralfate and PPI. Second endo in May found no ulcers. Doctors said it was the opiates causing the nausea. CT'd Oxycontin, Fentanyl patch.

July 2014 - Lost 48 lbs. due to not eating because of severe nausea. GP prescribed Prozac 20mg and Ativan 2mg prn. Tried for 4 days, quit. Two week followup GP said keep taking Prozac. 4 days, quit again. Ativan taken rarely prn for anxiety and appetite.

August 2014 - Went to detox. Off opiates. Still nauseous, helmet head, drugged feeling. Doctor CT'd gabapentin. Ended up in ER. Found 2 gallstones. Gabapentin reinstated at 900mg. Tried botched up and down taper to get off Gabapentin. No tapering advice from doctor. Said to just CT again.

September 2014 - Coded on table during gallbladder surgery. Developed liver biloma due to CPR by doctor. Had bile bulb inserted for 2 wks to drain.

October 2014 - Gallbladder removed. Still nauseous, 3am cortisol surging, drugged helmet head, vertigo, breathlessness, whooshing head, heart palps.

November 8th, 2014 - CT'd gabapentin suggested by family and 4 different doctors. Was told no withdrawal is associated with gabapentin. Have been in hell ever since. No windows, just one big tsunami every day with same symptoms for 4 months.

December 26, 2014 - Found SA. At least I know I'm not insane. My family thinks I'm doing this to myself. Akathesia has become unbearable.

March 10, 2015 - In absolute daily hell with no relief. Currently taking magnesium 200mg before bedtime.

Link to post

Thanks, Wiggle. Yeah, rough night, rough morning. Never ends, does it?! Appreciate the support!

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

WI, so sorry to read your window evaporated.  Do you ever need a break. 

 

Do you do any kind of relaxation techniques?  Just thinking since right now staying as calm as possible seems to be helpful for movement problems maybe guided relaxation videos or something along those lines might be something to try. 

 

I pray you get some kind of reprieve one way or another and a big one too!

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

Hi Wiggle, checking in. 

 

I'm glad you had a window. That is an very good sign! 

 

And I'm sorry your window has closed. I can't offer you much help right now. I'm back into a full wave because I tried a new antidepressant in the hopes of feeling less depressed, and I cause a lot of harm to myself. I'm also having big myoclonic jerks when trying to sleep. Lots of involuntary movements along with anxiety and akathisia. I also think our emotions make the physical symptoms worse, mind and body are connected. 

 

I am extremely angry. I just can't believe there isn't a faster cure for all of us. It's really hard for me to accept that right now. I hate waiting and suffering. Sorry for being so negative on your thread. I'm having a hard time too. 

 

All we have left to do is pray and hope for a miracle. 

 

Praying for you and all of us going through this. 

-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

*post and two replies moved from symptoms section

 

Hey Pals,

 

I'm in a partial window right now and find myself wondering—with far less terror than usual—about the recurrence of problems 2-3 years after recovery.  Seems like that happens to decent batch of people, where they are excited and hep pay to be healed, yet get floored again to varying degrees after about two years. 

 

Can anybody in this situation speak to the experience, intensity, and duration of waves that appear again after a presumed recovery that has appeared lengthy?  Looking in particular for how to handle recurrence of physical symptoms, such as akathisia, tremors, jerks, limping, etc.  I'd like to know what I should be prepared for, how to handle, etc.

Edited by Petunia
added note

**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

Emotional window yesterday.  Emotional window today.

 

Partial cognitive windows yesterday and today; still have brain fog that I wish would lift, but I challenged myself to read a few pages of postmodern literature.  My reading comprehension level is probably about ten years lower than what it used to be, and I don't remember what I read, but I'm hoping I can find a way to re-train myself into comprehension and retention, and will try to come up with some techniques for that to apply during my small windows.

 

Yesterday and today, I was able to walk a little more than usual, maybe five laps up and down the hallway, instead of the usual two.  I was also able to go downstairs and visit my family today.  Usually, I am too jerky to leave my bed.

 

I still fear the onset of new symptoms, like the dreaded akathisia, and the worsening of wiggles and jerks.  After all, look at what I wrote just a few days ago.  But I'm grateful for a couple of days of less suffering and hope that God allows me to be one of his miracles.      

**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

This sounds wonderful, Wiggles! So happy for you! I watch game shows on TV--not because I particularly like them, but because they're one thing I can tolerate. I think the ones I can participate in help to challenge my brain. In the beginning, my brain would actually literally hurt. Now, I actually can sometimes come up with correct answers.

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

((((Wiggles)))) Praying you have windows.

January 2012 - Prescribed 900mg gabapentin and 30mg Norco for lower lumber spinal stenosis pain.

September 2013 - Spinal fusion surgery, 6 levels. Hospital ramped up meds 1500mg gabapentin, 100mg Norco, 80mg Oxycontin, 25mg Fentanyl patch.

January 2014 - Sever nausea daily and with back pain every 4 hours. 2 trips to ER. First endoscopy found ulcer. Treated with Sucralfate and PPI. Second endo in May found no ulcers. Doctors said it was the opiates causing the nausea. CT'd Oxycontin, Fentanyl patch.

July 2014 - Lost 48 lbs. due to not eating because of severe nausea. GP prescribed Prozac 20mg and Ativan 2mg prn. Tried for 4 days, quit. Two week followup GP said keep taking Prozac. 4 days, quit again. Ativan taken rarely prn for anxiety and appetite.

August 2014 - Went to detox. Off opiates. Still nauseous, helmet head, drugged feeling. Doctor CT'd gabapentin. Ended up in ER. Found 2 gallstones. Gabapentin reinstated at 900mg. Tried botched up and down taper to get off Gabapentin. No tapering advice from doctor. Said to just CT again.

September 2014 - Coded on table during gallbladder surgery. Developed liver biloma due to CPR by doctor. Had bile bulb inserted for 2 wks to drain.

October 2014 - Gallbladder removed. Still nauseous, 3am cortisol surging, drugged helmet head, vertigo, breathlessness, whooshing head, heart palps.

November 8th, 2014 - CT'd gabapentin suggested by family and 4 different doctors. Was told no withdrawal is associated with gabapentin. Have been in hell ever since. No windows, just one big tsunami every day with same symptoms for 4 months.

December 26, 2014 - Found SA. At least I know I'm not insane. My family thinks I'm doing this to myself. Akathesia has become unbearable.

March 10, 2015 - In absolute daily hell with no relief. Currently taking magnesium 200mg before bedtime.

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wow!  wonderful that you caught a bit of a break.

2002-put on amitryptiline for fibromyalgia. 10mg.2004-stopped abruptly. Didn't think it helped.2006 approx.-put on Paxil for mild anxiety 20 mg.2007 upped to 40 mg. not sure why.2011- tapered from 40 to 10. went nuts and went back to 20mg2014- tapered from 20mg to 0 from April to The end of June.current meds- Metformin(type 2 diabetic) and low dose aspirin.Take multi vitamin and vit b12, vit. D and magnesium. 5 months off Paxil. Still suffering.recently added 1.2mg of Paxil to alleviate withdrawals.(Nov 30)Dropped to .9mg because having symptoms from reinstatement.(dec 23)<p>taper to .76mg-.8mg (Feb 3) approx. weight .010 to about .008-.009 on scale.
.6mg (march 19th.) .5mg(April 19th)
.4mg(April 27th)
.2 (June 27th)

0mg.  done taper at beginning of August.

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Wiggle, I'm so happy that you're having these windows, you surely deserve them. 

 

Try to enjoy these moments and not think about things that have not happened yet. I know it's hard.

 

The reading is a great sign. I also feel like my cognitive abilities have dropped and I haven't been able to read properly in months, but sometimes I try to even if I can't concentrate very well. 

 

We have to keep trying. I took a music ear training lesson today (I try to take it once a week) today with my akathisia and everything, it was torture, but I survived, and my teacher knows about my condition and says that I still am doing very well on my learning. So I guess we have to keep using our brains and re-training them, like you said. 

 

I really hope your windows keep coming. 

-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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Who do you know whose withdrawal symptoms returned after 2 years of being OK post taper?

Sept 12th 1992-began taking Imipramine (50mgs) for panic attacks.

Stopped Imipramine after 4 months (cold turkey).

7 months later experienced "mysterious" bad flu-like symptoms, although, without upper respiratory problems or fever. Because of this and a day of panic attacks, was put on Prozac (20mgs?) for 2 months and then, when that didn't work-was put back on  Imipramine,  plus Xanax 1 mg (4Xdaily)-October 1993.

March 1999-switched from Imipramine (50mgs) to Celexa.

2008-switched to Pristiq for 3 months, then back to Effexor XR (after bad reaction to the Pristiq).

Sept 1st 2010-Switched from Effexor XR (75mgs) to Effexor Generic (solid form) in preparation for taper.

Nov 15th 2010-Began tapering from 75mgs Effexor Generic.

January 13th 2014-.06mgs

April 17th 2014-      .03mgs

May 11th 2014-       .02mgs

Ended taper October 31st 2014

Oct 4th 2015-11 months post taper and completely back to normal!

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

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