Jump to content

WiggleIt: tardive dyskinesia from TCAs and benzo rapid tapers


WiggleIt

Recommended Posts

  • Moderator Emeritus

Stupid jerks and wiggles again today.  Not quite as bad as usual, but still d*mn bad.  And face scrunching.  F*ck 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
  • Replies 843
  • Created
  • Last Reply

Top Posters In This Topic

  • WiggleIt

    323

  • Wildflower0214

    65

  • Pugknows

    64

  • luv2knit

    63

Top Posters In This Topic

At the moment I am 5.5 years out of my initial negative reaction. The acute phase lasted for 3.5 years, with waves and windows from the start. I cannot even remember how it was when it got better and better. I still have symptoms and they can even be very bad for some hours after I did something wrong.

 

So if someone experiences a recurrence of symptoms after feeling good (recovered, how do we define that state in the first place?) for quite a time, I think that the wave will not be as bad and long as previous waves. Though I guess it always depends on why this wave occured in the first place. Out of the blue or maybe because induced by medication?

 

So I would not be too afraid of any wave that far out, the chances are not that high and if it comes, you already know how it feels and that it won't last forever (or better, be quite short).

End of 2008: Remeron 15mg for around 2 months. Unorthodox taper, no problems.
End of August 2009: Lexapro 10mg for only 4 days. Panic attack after 3 pills. Severe gastro problems in the morning for 3 days after last pill. 2 weeks later strong w/d symptoms set in.

Acute WD lasted around 3.5 years. I am feeling much better today, 5.5 years out, but still have some symptoms left.

Link to post

I'm so sorry, Wiggle :(

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

I second your f*ck this! And pray for everything to calm down for you, Wiggles. Hugs.

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
UnfoldingSky

Oh Wiggle, this sucks so bad for you..Makes me angry you can't get a long break.  Praying this latest wave passes.

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'm not seeing 100% recovery for people as severe as me, not on this site and not on benzobuddies.  Straight up not seeing it for people with physical symptoms this severe.  I think pax80 is the ONLY one, but they haven't said whether they wiggled and jerked.  I know they couldn't walk or eat, which I can't, either, but if they didn't wiggle or jerk, then it means they weren't as bad as me.

 

When I first saw another member post something like this, I didn't want to believe it was true, but the more recovery stories I look through, the more I see that physical symptoms this severe only recover partially at best, even five plus years out.

**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 on benzobuddies too (Sofa King Done). I hardly go on there because it's too impersonal and people don't really reach out to others that much. I've read almost every success story on that site and there were lots of people worse off than you who made a full recovery. They had strokes, brain scar tissue from seizures, many illnesses and diseases during withdrawal and eventually recovered. I will try to find them for you, okay? We are all going through some kind of alternate hell right now that is different than the normal sh*tty we've gotten used to. Maybe we're about to turn a 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

((((Wiggle)))) We are all going to recover from this BS.

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
Wildflower0214

Wiggle....I really do think you will recover and there are a lot of stories out there. You will recover.

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
  • Moderator Emeritus

((((Wiggle)))) I'm on benzobuddies too (Sofa King Done). I hardly go on there because it's too impersonal and people don't really reach out to others that much. I've read almost every success story on that site and there were lots of people worse off than you who made a full recovery. They had strokes, brain scar tissue from seizures, many illnesses and diseases during withdrawal and eventually recovered. I will try to find them for you, okay? We are all going through some kind of alternate hell right now that is different than the normal sh*tty we've gotten used to. Maybe we're about to turn a corner.

I agree that it's a less personal site on benzobuddies.org. I will look for you next time I am on there. I kept the same name, even though you're not supposed to.

 

Thank you for being willing to look through those recovery stories. I've looked through a bunch, but they all sounded like partial recoveries 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
  • Moderator Emeritus

Wiggle....I really do think you will recover and there are a lot of stories out there. You will recover.

Thank you, JDM/Wildflower. I wish I knew why you believed in me so much.

**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

Btw...had to change my name. My psych doc looks at this site as case study material. His whole practice is tapering people off of this stuff. And there was just enough info for him to have possibly figured out who I was. And I'd prefer that not happen. :)

 

I believe in you because you are resilient, stubborn as a donkey, and because you have faith in God. I truly believe you will make a full recovery. I don't think you will ever be the same person you once were ever again. But, I think in time you will be grateful for the person who you will have become because of this.

 

I'm not in the habit of blowing smoke up people's behinds. It's just not my style. I have a firm anticipation of your improvement. I'm not just trying to make you feel better. I believe it.

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

You will get there, Wiggle. I guess I have a different viewpoint, because I try not to read too much--even the recovery stories. There's just not that much I can relate to, because my situation is different than most. The support is priceless, though.

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

(((((Wiggle))))) March is the month we all lift our baselines. I feel it. Exhaustion, followed by despair, followed by worsening of symptoms, followed by improvement. I see a pattern.

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

Praying to God for all of us that this is the truth He wants us to see.

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

I pray you are right, Pug.

 

Thinking of you, Wiggle.

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

Hoping you're feeling better Wiggle. I agree with luv2knit, try not to compare yourself to other people's recovery or lack of recovery. The support we can get from here is what will help us survive and make it to recovery. 

-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
UnfoldingSky

I'm not seeing 100% recovery for people as severe as me, not on this site and not on benzobuddies.  Straight up not seeing it for people with physical symptoms this severe.  I think pax80 is the ONLY one, but they haven't said whether they wiggled and jerked.  I know they couldn't walk or eat, which I can't, either, but if they didn't wiggle or jerk, then it means they weren't as bad as me.

 

When I first saw another member post something like this, I didn't want to believe it was true, but the more recovery stories I look through, the more I see that physical symptoms this severe only recover partially at best, even five plus years out.

 

Wiggle, there was a case I think I told you about that I read, about a guy who had TD issues as severe as yours, who had it for months then abruptly it stopped.  He had constant jerking too.

 

So please don't count yourself out of recovery. I know many people in my life off-line who are miracle stories, survivors of various problems--including a woman who was told five times she would die of cancer and every time she beat it. 

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

How are you doing Wiggle? 

-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

Stopping by to say hello, Wiggle.

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
UnfoldingSky

Hope you are having a window Wiggle, I miss you.

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

Can somebody please tell me why there is something wrong with my stomach?  Food going down my esophagus feels wrong, gets stuck.  Still can't swallow.  And there is something wrong when the food hits my stomach.  It feels like it's a foreign object that shouldn't be inside my stomach, like foreign objects that shouldn't be going down my esophagus.

Please help me.  

 

I'm sorry I haven't been around for anybody else lately.  I just can't.

It feels like physical poison when food is going down and when it's hitting my stomach.   

**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

Hi Wiggle, I'm glad you wrote, and I'm sorry about your eating problems. 

 

I really don't know what causes that exactly, but it's probably due to the TD. I read on a forum about a person with a similar problem (I think), who takes rhodiola and it helps. 

 

Here's the link

 

http://www.medhelp.org/posts/Neurology/Rhodiola-For-Tardive-Dyskinesia-Any-Suggestions/show/735663

 

Sorry you're having a tough time. I really wish you could get a break from all of 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. 

Link to post
Wildflower0214

Can somebody please tell me why there is something wrong with my stomach? Food going down my esophagus feels wrong, gets stuck. Still can't swallow. And there is something wrong when the food hits my stomach. It feels like it's a foreign object that shouldn't be inside my stomach, like foreign objects that shouldn't be going down my esophagus.

 

Please help me.

 

I'm sorry I haven't been around for anybody else lately. I just can't.

 

It feels like physical poison when food is going down and when it's hitting my stomach.

When it hits your stomach, do you mean like at the end of your esophogus kinda feeling? I know this sounds stupid, but I'm trying to figure out where you are speaking about. I have had food get stuck and then it seemed to sit at the entrance to my stomach and made me uncomfortable and it burned. So, I think I have had a form of what you are talking about.

 

I'm so sorry. I wish this would stop. Are you still drinking from the straw? Or are you trying to introduce solid foods?

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
UnfoldingSky

Wiggle, I'm so glad that you posted, I was worried about you.  I wish you weren't suffering so.

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 have issues with my stomach and sometimes with swallowing and where food doesn't feel like it is going down properly. I am sorry you are suffering. I hope it gets figured out.

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.

Link to post

Wiggle, thinking of you. Hope you see some relief soon.

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

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          

 

Hi Steeley,

 

Sorry it's been a while since I've written back, but I remember that you said you had some form of tardive dystonia.  I've got that, too, but I didn't really realize it until now, even though my ER diagnosis said "dystonia" on it.  I'm off all meds now and still have dystonia.  

**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

Hey there. I'm sorry I've been from silent. I'm struggling. I hope you are ok...hangin in there.

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
  • Moderator Emeritus

Ugh, seriously, if people can work, go to school, and walk and swallow and exercise during their withdrawal, then I wish they would stop whining.

 

If your symptoms aren't bad enough to halt your life 100%, then count your blessings.

**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

Ugh, seriously, if people can work, go to school, and walk and swallow and exercise during their withdrawal, then I wish they would stop whining.

 

If your symptoms aren't bad enough to halt your life 100%, then count your blessings.

**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

Ugh, seriously, if people can work, go to school, and walk and swallow and exercise during their withdrawal, then I wish they would stop whining.

If your symptoms aren't bad enough to halt your life 100%, then count your blessings.

Agreed! I hope you are able to do some of those things too soon.

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.

Link to post

Sorry things are so rough right now, Wiggle. I'm finding it hard to keep up with everyone right now, but wishing you well. XOXO

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

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

Link to post

((((WiggleIt)))) I agree with everything you said. I couldn't hold down a job or any amount of food to save my soul. And exercise? Fuggedaboudit.

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

You're right Wiggle. I was once in that place, during acute withdrawal on 2013 from several meds, life was 100% halted for about 6 months. Things have improved a lot and sometimes  I forget about that, I still suffer and somedays are completely halted but it does get better and I have my windows and waves. It doesn't matter if your case is severe, you will get windows, and you will notice improvements, and you will heal. 

-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

You guys are the best.

 

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

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...

Important Information

Terms of Use Privacy Policy