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WiggleIt: tardive dyskinesia from TCAs and benzo rapid tapers


WiggleIt

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Sky, you have no idea how much I love you. Sometimes I feel like you are an angel here just to comfort me. Your kindness is always ready when I most desolate. I hope I am well enough someday to comfort you if you need it.

 

Thanks WI, just trying to help out, actually you just cheered me up, I had a bad couple of days and this post made me feel better.  And don't worry you will be well again!  :)

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

Diaphragm contacting weirdly today, making breathing scary.  

**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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So sorry to read this WI, I hope your night gets better. 

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

*contracting*

 

Nothing life-threatening, right? Feels like the muscles are involuntarily contracting inward, making breathing feel shallow.

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

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

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

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

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

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

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

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

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

-Month 7: hair falling out; no vision improvement; still tardive dystonia; facial & tongue tics returned
-Month 8: back to acute, incl. Grand Mal seizure-like episodes. New mental torment, PGAD, worse insomnia
-Month 9: tardive dystonia worse, dyskinesia returned. Unable to breathe well due to dystonia in stomach, chest, throat
-Month 13: Back to acute, brain zaps back, developed eczema & stomach problems. Left leg no longer works right due to dystonia, meaning both legs now damaged
-4 years off: Huge improvements, incl. improved dystonia

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  • Moderator Emeritus

Had a good cognitive and mood window today, so really hoping my body doesn't kill me in my sleep from lack of breath. It hasn't happened yet, but there is always the fear.

 

Otherwise, not a bad day.

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

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

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

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

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

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

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

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

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

-Month 7: hair falling out; no vision improvement; still tardive dystonia; facial & tongue tics returned
-Month 8: back to acute, incl. Grand Mal seizure-like episodes. New mental torment, PGAD, worse insomnia
-Month 9: tardive dystonia worse, dyskinesia returned. Unable to breathe well due to dystonia in stomach, chest, throat
-Month 13: Back to acute, brain zaps back, developed eczema & stomach problems. Left leg no longer works right due to dystonia, meaning both legs now damaged
-4 years off: Huge improvements, incl. improved dystonia

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  • Moderator Emeritus

Spoke too soon. Something in my brain felt literally like it physically snapped, as if my brain were a bone that broke, then my symptoms ramped up, severe headache included. More face scrunching than usual.

**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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Oh, no! So sorry, Wiggle--try to hang in there! Praying this passes 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)

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  • Moderator Emeritus

What a terrible, horrible, no good, very bad day. To think I had woken up ready to have a nice one.

**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

It's been a while since I viciously hated myself, but today I do.

**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

I keep trying to redirect, but people keep messing it up and I can't keep beating on, boat against the current, being borne back ceaselessly into the worst.

**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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Don't hate yourself WI you didn't cause this situation.  It's not you. 

 

I had people recently undoing my re-directing too.  So frustrating.  But every day is a new day, please don't give up. 

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

Well, I'm starting to feel a little better. What an awful wave. I will be so proud of myself when I relearn not to let external forces send me into a wave. Never, ever, ever happened to me before meds. I believe I can relearn emotional coping skills eventually. Before meds, I had oodles of coping skills, so I know I can get them back.

 

I just hope the same happens for my physical symptoms.

**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

You can relearn. They will come back. I try to redirect too and my mother generally throws me off. She doesn't mean to. But, it makes me crazy.

 

How's the swallowing?

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

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

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  • Moderator Emeritus

The swallowing is still terrible! I could barely get down scrambled eggs and chicken salad today.

 

I used to be SUCH an eater. It was kind of a joke among me and my friends because I would eat piles and piles of food, as much as the guys would eat!

**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

Book I ordered came in the mail today... "The Brain That Changes Itself." It's all about neuroplasticity and stories of brain recovery from various injury and disabilities. Maybe a hopeful beacon about how our brains can heal themselves AND our bodies of the antidepressant damage!

**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

All the exclamation points feel compensatory for the false joy I am attempting to exude.

**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

Hang in there, Wiggle. It will get better... For all of us... It has to!

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

I am hopeful to make today a good day, to be gentle with myself and others around 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

I hope your day is going well WI.  I had that same book given to me early in withdrawal but never did read it, let me know if it's any good.

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

Book I ordered came in the mail today... "The Brain That Changes Itself." It's all about neuroplasticity and stories of brain recovery from various injury and disabilities. Maybe a hopeful beacon about how our brains can heal themselves AND our bodies of the antidepressant damage!

I read that book too and it is very encouraging.  Lots of different kinds of brain injury or dysfunction and how the brain works around the problems to establish functioning. 

1971-81  Valium 5mg c/t PAWS     1992- through now Zoloft 25mg    2003-05 Valium 12mg Slow Taper Off

2013 Afrin Exposure to CNS    2013 O/D Val 230mg    2013 Doxepin 50mg Clonidine 2mg Zoloft 25mg

3/15/16  Doxepin 49mg Micro Tapering  Zoloft 24.3mg Holding taper

3/15/16 Clonidine mg 0.1 1/2 -    Decreasing incrementally. 

10/9/16  Doxepin 48.9  Zoloft 24.3  Clonidine  01.10  Continuing micro taper on Doxepin.

11/16/16 Doxepin 48mg  Zoloft 24.3mg  Clonidine 1.30mg

5/4/17  Doxepin 45mg  Zoloft 24mg  Clonidine 1.20mg   Micro taper of Doxepin, Clonidine

01/13/19  Doxepin 45mg   Zoloft 21mg   Will start Micro taper of Doxepin 2/19

 

 

Link to post
  • Moderator Emeritus

I hope your day is going well WI. I had that same book given to me early in withdrawal but never did read it, let me know if it's any good.

Love it so far. Very hopeful! It seems that if we gently keep exercising our brains and bodies PLUS give ourselves excellent nutrition, we truly have a chance!!!

**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

What if I can only eat the same 15 foods Ive been eating for three months 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.

Link to post
  • Moderator Emeritus

What if I can only eat the same 15 foods Ive been eating for three months lol. :(

As long as they are healthy foods, I think you are doing fine. Besides, you have been able to slowly add foods, so I know you won't be stuck on only fifteen foods forever. :)

**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

 

What if I can only eat the same 15 foods Ive been eating for three months lol. :(

As long as they are healthy foods, I think you are doing fine. Besides, you have been able to slowly add foods, so I know you won't be stuck on only fifteen foods forever. :)

You are right. It takes about a month to add a food. :) im working on green beans. :)

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

Green beans are SO good for you!!! That is great news!!!

**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

Green beans are SO good for you!!! That is great news!!!

Lol. Yes, good news. Bad news, I can't sleep. Awake with nasty tickle nerve ending sensations. :( I hope you rest well

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

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

Link to post

 

I hope your day is going well WI. I had that same book given to me early in withdrawal but never did read it, let me know if it's any good.

Love it so far. Very hopeful! It seems that if we gently keep exercising our brains and bodies PLUS give ourselves excellent nutrition, we truly have a chance!!!

 

 

Good to hear!  :)

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

What if I can only eat the same 15 foods Ive been eating for three months lol. :(

 

JDM I am partly recovered and I had  food and supplement sensitivities in the beginning of severe withdrawal.  My diet was pretty limited back then, I had quite a list of things I couldn't tolerate. It does improve though, now I can handle almost anything.  

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
Wildflower0214

 

 

What if I can only eat the same 15 foods Ive been eating for three months lol. :(

JDM I am partly recovered and I had food and supplement sensitivities in the beginning of severe withdrawal. My diet was pretty limited back then, I had quite a list of things I couldn't tolerate. It does improve though, now I can handle almost anything.

Well, that is good to hear. Because, I can't tolerate most everything. And, before this all happened I was totally fine. Never had problems with supplements or food. And, my food intolerance seems to be extreme compared to most people on here, so it concerned me a bit.

 

Thx for the encouragement. :)

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

 

Green beans are SO good for you!!! That is great news!!!

Lol. Yes, good news. Bad news, I can't sleep. Awake with nasty tickle nerve ending sensations. :( I hope you rest well

 

 

Oh, no, did you finally get some sleep?  I had such a hard time falling asleep, but finally, somehow, drifted off.  Before these meds, I used to love sleep!  I just can't believe that these meds have turned everything pleasurable into a nightmare, from sleeping to eating.

**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

 

 

What if I can only eat the same 15 foods Ive been eating for three months lol. :(

JDM I am partly recovered and I had food and supplement sensitivities in the beginning of severe withdrawal. My diet was pretty limited back then, I had quite a list of things I couldn't tolerate. It does improve though, now I can handle almost anything.

Well, that is good to hear. Because, I can't tolerate most everything. And, before this all happened I was totally fine. Never had problems with supplements or food. And, my food intolerance seems to be extreme compared to most people on here, so it concerned me a bit.

 

Thx for the encouragement. :)

 

 

Sky is one of my personal heroes and has overcome 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

 

 

 

 

What if I can only eat the same 15 foods Ive been eating for three months lol. :(

JDM I am partly recovered and I had food and supplement sensitivities in the beginning of severe withdrawal. My diet was pretty limited back then, I had quite a list of things I couldn't tolerate. It does improve though, now I can handle almost anything.
Well, that is good to hear. Because, I can't tolerate most everything. And, before this all happened I was totally fine. Never had problems with supplements or food. And, my food intolerance seems to be extreme compared to most people on here, so it concerned me a bit.

 

Thx for the encouragement. :)

Sky is one of my personal heroes and has overcome so much :)

:) we all have a hero. WestCoast is mine. It is very helpful to have someone to look up to in this situation.

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

On my way to brain MRI.

 

Feeling new problems with my body everyday underscores the damage these medications did and how they have worsened and complicated my original health problems. If I has been prescribed appropriate physical therapy immediately after being injured, I don't know how much I would have recuperated, but I DO know that my body was overall less disabled, so my chances used to be better than they are now.

 

The muscle weakness and neurological disconnection have severely exacerbated my original injury to the point where I don't know if it's rehabilitatable anymore, and nobody else knows, either. My physical therapists are kind enough to keep working with me, but I can now see the new uncertainty in their eyes and voices.

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

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

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

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

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

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

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

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

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

-Month 7: hair falling out; no vision improvement; still tardive dystonia; facial & tongue tics returned
-Month 8: back to acute, incl. Grand Mal seizure-like episodes. New mental torment, PGAD, worse insomnia
-Month 9: tardive dystonia worse, dyskinesia returned. Unable to breathe well due to dystonia in stomach, chest, throat
-Month 13: Back to acute, brain zaps back, developed eczema & stomach problems. Left leg no longer works right due to dystonia, meaning both legs now damaged
-4 years off: Huge improvements, incl. improved dystonia

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  • Moderator Emeritus

Just tried to go to Target with my parents. Ended up jerking all over the place and had to be wheeled out.

 

To think I used to be an athlete and college professor. Now, I look like a disabled, autistic person that people avoid looking at in public out of pity.

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

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

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

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

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

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

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

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

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

-Month 7: hair falling out; no vision improvement; still tardive dystonia; facial & tongue tics returned
-Month 8: back to acute, incl. Grand Mal seizure-like episodes. New mental torment, PGAD, worse insomnia
-Month 9: tardive dystonia worse, dyskinesia returned. Unable to breathe well due to dystonia in stomach, chest, throat
-Month 13: Back to acute, brain zaps back, developed eczema & stomach problems. Left leg no longer works right due to dystonia, meaning both legs now damaged
-4 years off: Huge improvements, incl. improved dystonia

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  • Moderator Emeritus

A runner, can you imagine?! Now I get pushed around in a wheelchair/walker while I cry.

**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 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          

Prescribed 30mg Mirtazapine approximately 10 years ago.  PTSD 

 

C/T 50% of dose - dreadful, hellish

Begin to reduce by 10% every 3-6 weeks

now:

5.11.14 4.50mg - going to wait a bit longer

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

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