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WiggleIt: tardive dyskinesia from TCAs and benzo rapid tapers


WiggleIt

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Dear, Wiggle--I am praying for comfort and peace for you right now. I know you are scared. Try to breathe and trust God. He is the one who will see us through this.

 

Everyone is different. I have the akathisia and did not get brain zaps. I have a friend on the Zoloft FB page who went off two weeks before I did who has nothing but brain zaps. I don't know, but I would think it very unlikely you would have TD and akathisia. As far as things getting worse--I too am scared when things seem to be getting worse, but I am trying to remind myself that it is all part of the windows and waves pattern of recovery. Your brain is healing, even during the waves. We are all here with you... and so is God!! Hang in there!

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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I do not want to die, but I do not want to live like this.  Is this cruel joke really life?  I was put here to live only a short part of my life in joy, the rest of it in disabled misery, then death?  

**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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Okay, I just spent some time on benzobuddies.org reading recovery stories and I feel a little better and a little more hopeful.  There is a bigger collection of success stories over there than here, and since I'm clearly getting slammed by double withdrawal from tricyclics and benzos, I related to a lot of stuff over there.

 

Plus, I saw some things addressed there that haven't been addressed here.  Like, lots more people over there with myoclonic jerks, but several reports of jerks fading over time.

 

Still would love to know when my face-jerks will go away.

 

Also, people over there describing bladder pain and bladder urgency that also resolved.  Yay!

**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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Found more people on BB with myoclonic jerks. Some recovered, some not.

 

One person specifically stated that once they stopped worrying about their jerking, it abated.

 

I hope The Lord can guide me to this place of healing.

**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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Hey WI, our journeys through this WD process seem very similar, ie. how we got started on psyche drugs, the emotional and psychological fears and torment, what we are doing to give ourselves hope (benzo buddies success stories). We seem to get so exhausted with the groundhog day grind of relentless symptoms, we think we'll never recover and are currently feeling the way we'll always feel. We keep forgetting that we never had these symptoms before WD. So we have to hold onto the logic that we WILL eventually recover from them. Hope and pray you get relief today. Keep your faith in God that He is healing all of us.

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

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

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

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

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

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

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

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

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

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

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Wiggle, I initially experienced bladder pain and urgency, and that is one thing that has almost completely cleared up for me. I would have to run to the bathroom every 5 minutes, but would not be able to go. I drink quite a bit of water anyway, but tried to drink even more, and this seemed to help for me. I still have similar issues with bowels, and it is annoying, but since I am actually going at least once a day, I try not to worry, and just hope it will eventually resolve.

 

The myoclonic jerks are not unique to withdrawal. I had these in my legs in the beginning of my Transverse Myelitis. Initially, they would occur if I just touched my toe down to the floor. They got gradually better over time, but would still happen when I was especially stressed as long as several years out. I know--not exactly what you want to hear, but the point is, they happened less and less, and at a point when I would have thought they would be permanent, they finally did go away completely. (If you have not heard my story about this, I was completely paralyzed initially, so this probably took longer for me.)

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

Hey WI, our journeys through this WD process seem very similar, ie. how we got started on psyche drugs, the emotional and psychological fears and torment, what we are doing to give ourselves hope (benzo buddies success stories). We seem to get so exhausted with the groundhog day grind of relentless symptoms, we think we'll never recover and are currently feeling the way we'll always feel. We keep forgetting that we never had these symptoms before WD. So we have to hold onto the logic that we WILL eventually recover from them. Hope and pray you get relief today. Keep your faith in God that He is healing all of us.

Thank you so much, Pug. You are an amazing person.

**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 initially experienced bladder pain and urgency, and that is one thing that has almost completely cleared up for me. I would have to run to the bathroom every 5 minutes, but would not be able to go. I drink quite a bit of water anyway, but tried to drink even more, and this seemed to help for me. I still have similar issues with bowels, and it is annoying, but since I am actually going at least once a day, I try not to worry, and just hope it will eventually resolve.

 

The myoclonic jerks are not unique to withdrawal. I had these in my legs in the beginning of my Transverse Myelitis. Initially, they would occur if I just touched my toe down to the floor. They got gradually better over time, but would still happen when I was especially stressed as long as several years out. I know--not exactly what you want to hear, but the point is, they happened less and less, and at a point when I would have thought they would be permanent, they finally did go away completely. (If you have not heard my story about this, I was completely paralyzed initially, so this probably took longer for me.)

Knit, your words are hopeful. I am familiar with story, but it slipped my mind about the transverse myelitis. It is good to know the bladder pain is greatly improved, and also excellent to know the jerks eventually cleared. I will wait years, as long as it resolves. I may not wait gracefully, but I will wait.

 

I finally got to sleep last night after telling God that I will accept whatever he hands me.

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

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

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

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

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

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

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

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

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

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

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Not quite as bad as it sounds. The worst for me was probably the first year. It took both of my parents in two separate nursing homes at the same time and dying 5 years later to stress me enough to bring it back temporarily.

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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Hi Wiggle. 

 

I've also had the same thought and feeling about just being put in this life to enjoy a few years and the rest of them would only be misery. But this is absolutely not true. For me it's been a very long and painful journey but there has been improvement. Our minds are very powerful and if we feed them each day with ideas about never recovering (or getting new symptoms that we don't have right now), it is less likely that we will recover. I think we need to tell ourselves each day that we will get our health back, even if it feels like we won't. 

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

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

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

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

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

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

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

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

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

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

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

-August 2016: Slowly tapering Nortryptiline. 

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((((Wiggle)))) We are gonna make it through all this. When I go to bed at night, I actually look forward to waking up the next day to see if I'm "there" yet. So far, nope. But one day I will.

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

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

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

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

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

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

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

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

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

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

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  • Moderator Emeritus

Whine whine whine

 

Sad sad sad

 

Scared scared scared

 

Feels like my right leg is getting twitchier than usual. So much for being grateful that I was not getting too much RLS...maybe if I say the rosary until I fall asleep...

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

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

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

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

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

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

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

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

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

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

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Wildflower0214

I had the jerks for a long time Wiggle. I also had sensations from hell, which up until recently went away.

 

I really really believe you will be alright, but unfortunately, I think many of us are going to be hanging around this forum a lot longer than we would like.

 

I'm 30, and I dont really expect this to end until I'm 35... I figure then, I will at least be somewhat functional and relatively sane.

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

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

Link to post
Wildflower0214

The thing that frightens me is that I have no family except my parents who are 67 and 69. I really have no one but them. I have friends, but I can't move in with them while I'm nuts. And, I would never want to impose on them. Most of them have small children and are married.

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

Oh, JDM, I have the exact same situation with parents the same age, so I worry as they age and I get sick.

**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 am turning into the type of person whose threads are I pleasant to read. I realize after joining benzobuddies.org and reading about cases there that I am definitely in double to triple withdrawal.

 

I also realize that I am not likely to heal 100% based on my medication history and cold turkeys. I am not likely to be grateful for a partial recovery, but I will simply live handicapped for the rest of my life because I will have no other choice.

 

I also know now that I am likely to develop food intolerance and multiple chemical sensitivity years later. So, it's just going to be a **** life piled on top of more ****.

 

Also, seems like plenty of people get worse the further they get from their cold turkeys, so I also have that waiting for me.

 

I don't wish I were dead, but I can't say I'm grateful for this life, either. There are people in it I love and am grateful for, but I know that this is a bad life and I know that I am less than half of what I used to be and that I will never accomplish my life goals. That's just all there is to it and I'm tired of fooling myself.

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

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

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

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

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

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

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

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

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

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

Link to post

((((WI)))) I can hear how defeated you feel right now. You've been reading other people's stories that are bringing you down. I've done that. Still do it. You are projecting their situations onto yourself. There is no evidence, anecdotal or otherwise, that CT dooms you to permanent damage. Don't let your imagination destroy your hope. These are WD emotions. You will heal 100%. How you come off these drugs has nothing to do with forecasting your recovery. Read the threads of those who are tapering. Every time they make a small drop in dosage, they have symptom problems. The drugs are out of your system and you are healing. You will recover from this. You are not doomed.

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

What symptoms are you dealing with right now?

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

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

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

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

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

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

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

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

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

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

Link to post

WiggleIt, just wanted to say that I had the jerking awake from sleep with gasping breaths, and pounding heart, usually at 1:15am, for many months. It started in March 2013 and I think it had gradually stopped happening by fall of 2013. All my physical symptoms, which included hands and feet cramping up painfully, are gone now expect in occasional mild manifestations. So it does seem that things can get better, but it takes a long time.

2009: Cancer hospital said I had adjustment disorder because I thought they were doing it wrong. Their headshrinker prescribed Effexor, and my life set on a new course. I didn't know what was ahead, like a passenger on Disneyland's Matterhorn, smiling and waving as it climbs...clink, clink, clink.

2010: Post surgical accidental Effexor discontinuation by nurses, masked by intravenous Dilaudid. (The car is balanced at the top of the track.) I get home, pop a Vicodin, and ...

Whooosh...down, down, down, down, down...goes the trajectory of my life, up goes my mood and tendency to think everything is a good idea.
2012: After the bipolar jig was up, now a walking bag of unrelated symptoms, I went crazy on Daytrana (the Ritalin skin patch by Noven), because ADHD was a perfect fit for a bag of unrelated symptoms. I was prescribed Effexor for the nervousness of it, and things got neurological. An EEG showed enough activity to warrant an epilepsy diagnosis rather than non-epileptic ("psychogenic") seizures.

:o 2013-2014: Quit everything and got worse. I probably went through DAWS: dopamine agonist withdrawal syndrome. I drank to not feel, but I felt a lot: dread, fear, regret, grief: an utter sense of total loss of everything worth breathing about, for almost two years.

I was not suicidal but I wanted to be dead, at least dead to the experience of my own brain and body.

2015: I  began to recover after adding virgin coconut oil and organic grass-fed fed butter to a cup of instant coffee in the morning.

I did it hoping for mental acuity and better memory. After ten days of that, I was much better, mood-wise. Approximately neutral.

And, I experienced drowsiness. I could sleep. Not exactly happy, I did 30 days on Wellbutrin, because it had done me no harm in the past. 

I don't have the DAWS mood or state of mind. It never feel like doing anything if it means standing up.

In fact, I don't especially like moving. I'm a brain with a beanbag body.   :unsure:

Link to post
  • Moderator Emeritus

I found something to be truly grateful for: I did not die coming off of lorazepam, and I could have. God must have been there.

**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

Wiggle. I have a CT from the worst AD, Effexor. I am also stuck on Ativan. :(

 

I still have to taper it. I really do think you will get better. But, like I said, I think we are gonna be here a long while.

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'm grateful you're here on SA supporting yourself and others. Your story should never happen to anyone. And you weren't even on the meds for psychiatric reasons.

2009: Cancer hospital said I had adjustment disorder because I thought they were doing it wrong. Their headshrinker prescribed Effexor, and my life set on a new course. I didn't know what was ahead, like a passenger on Disneyland's Matterhorn, smiling and waving as it climbs...clink, clink, clink.

2010: Post surgical accidental Effexor discontinuation by nurses, masked by intravenous Dilaudid. (The car is balanced at the top of the track.) I get home, pop a Vicodin, and ...

Whooosh...down, down, down, down, down...goes the trajectory of my life, up goes my mood and tendency to think everything is a good idea.
2012: After the bipolar jig was up, now a walking bag of unrelated symptoms, I went crazy on Daytrana (the Ritalin skin patch by Noven), because ADHD was a perfect fit for a bag of unrelated symptoms. I was prescribed Effexor for the nervousness of it, and things got neurological. An EEG showed enough activity to warrant an epilepsy diagnosis rather than non-epileptic ("psychogenic") seizures.

:o 2013-2014: Quit everything and got worse. I probably went through DAWS: dopamine agonist withdrawal syndrome. I drank to not feel, but I felt a lot: dread, fear, regret, grief: an utter sense of total loss of everything worth breathing about, for almost two years.

I was not suicidal but I wanted to be dead, at least dead to the experience of my own brain and body.

2015: I  began to recover after adding virgin coconut oil and organic grass-fed fed butter to a cup of instant coffee in the morning.

I did it hoping for mental acuity and better memory. After ten days of that, I was much better, mood-wise. Approximately neutral.

And, I experienced drowsiness. I could sleep. Not exactly happy, I did 30 days on Wellbutrin, because it had done me no harm in the past. 

I don't have the DAWS mood or state of mind. It never feel like doing anything if it means standing up.

In fact, I don't especially like moving. I'm a brain with a beanbag body.   :unsure:

Link to post

((Wiggle)). I don't think there is any reason to think you will not eventually heal completely. There are many on multiple drugs who have healed. If cold turkey is the issue, then that means I will not heal either, because I was basically cold turkey. I'm not ready to give up yet. So sorry you're feeling so defeated, but I honestly think it is the withdrawal talking.

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

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

Link to post

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

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

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

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

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

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

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

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

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

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

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

Link to post
  • Moderator Emeritus

I'm grateful you're here on SA supporting yourself and others. Your story should never happen to anyone. And you weren't even on the meds for psychiatric reasons.

 

Thank you, that's very sweet.  Nothing should have happened to ANYONE here.  I think mental health issues are epidemically overdiagnosed and I would hazard to bet that probably only 1% of people out there have true schizophrenia or psychosis that is severe enough to possibly justify medication.

 

I feel like the people here who I have met who talk about the psychiatric reasons they were put on meds all seem like wonderful people who were suffering from things that could have been helped with enough time, patience, and support from resources OTHER than medication.   

**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 don't think there is any reason to think you will not eventually heal completely. There are many on multiple drugs who have healed. If cold turkey is the issue, then that means I will not heal either, because I was basically cold turkey. I'm not ready to give up yet. So sorry you're feeling so defeated, but I honestly think it is the withdrawal talking.

 

Thanks, Knit.  If it's the withdrawal talking, I can learn to control it.  It's the physical and cognitive symptoms that I have no control over if they don't repair themselves.

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

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

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

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

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

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

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

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

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

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

Link to post

 

I'm grateful you're here on SA supporting yourself and others. Your story should never happen to anyone. And you weren't even on the meds for psychiatric reasons.

 

Thank you, that's very sweet.  Nothing should have happened to ANYONE here.  I think mental health issues are epidemically overdiagnosed and I would hazard to bet that probably only 1% of people out there have true schizophrenia or psychosis that is severe enough to possibly justify medication.

 

I feel like the people here who I have met who talk about the psychiatric reasons they were put on meds all seem like wonderful people who were suffering from things that could have been helped with enough time, patience, and support from resources OTHER than medication.   

 

I soooo agree. If I had known about magnesium years ago I could have avoided a world of drugs.

Prozac 1999-2009 quit semi cold turkey.

 

2012 Placed on Seroquel 25 mg, Tranxene (Clorezepate) 3.75 mg 3x a day, Remeron 30 mg for anxiety/akathesia.

 

Weaned off Seroquel and Tranxene .to Remeron 15 Mg.

In May 2014 tried quitting Remeron at its lowest dose. Had severe withdrawals.Reinstated Remeron at 30 mg by doctor. August 5 2014 entered hospital. Doctor pulled the Remeron and bridged it to Pamelor (Nortriptyline) 40mg and Zyprexa 2.5mg.After removing the Remeron all my bad symptoms went away and I am stable.

 

9/11/14 - 7.5 mg tranxene, 40mg Pamelor, Zyprexa 2.5mg

12/29/14 -  20mg Pamelor, 1/6/15,  7/31/15 3.5mg, 8/10/15 3.2 mg, 9/15/15 2.2mg, 10/15/15 1.8mg

(Feb 2016 - 1.4mg Pamelor only -  OFF OF TRANXENE AND ZYPREXA SINCE DEC 2014 BENZO FREE Since 2014. Nortrityline (Pamelor) .8mg Aug 2016

March 2017 DRUG FREE

Link to post
  • Moderator Emeritus

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

 

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

 

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

**I'm 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

Also, Wiggle, a lot of people do impove a lot, but they come back and because they aren't completely healed, they say that nothing ever got better. But, then you go to the beginning of their thread and they were obviously suffering quite a lot, and then you look at where they are now and they are working part time...!!

And you're like.... Huh? Working part time is a lot different than complete insomnia and thrashing in misery on the floor. But, somehow they miss this. So, some people are just not telling the full story.

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

 

 

I'm grateful you're here on SA supporting yourself and others. Your story should never happen to anyone. And you weren't even on the meds for psychiatric reasons.

 

Thank you, that's very sweet.  Nothing should have happened to ANYONE here.  I think mental health issues are epidemically overdiagnosed and I would hazard to bet that probably only 1% of people out there have true schizophrenia or psychosis that is severe enough to possibly justify medication.

 

I feel like the people here who I have met who talk about the psychiatric reasons they were put on meds all seem like wonderful people who were suffering from things that could have been helped with enough time, patience, and support from resources OTHER than medication.   

 

I soooo agree. If I had known about magnesium years ago I could have avoided a world of drugs.

 

 

Chicken, can you remind me your original reason for being put on meds?

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

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

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

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

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

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

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

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

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

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

Link to post
Wildflower0214

 

 

 

 

 

 

I'm grateful you're here on SA supporting yourself and others. Your story should never happen to anyone. And you weren't even on the meds for psychiatric reasons.

Thank you, that's very sweet. Nothing should have happened to ANYONE here. I think mental health issues are epidemically overdiagnosed and I would hazard to bet that probably only 1% of people out there have true schizophrenia or psychosis that is severe enough to possibly justify medication.

 

I feel like the people here who I have met who talk about the psychiatric reasons they were put on meds all seem like wonderful people who were suffering from things that could have been helped with enough time, patience, and support from resources OTHER than medication.

I soooo agree. If I had known about magnesium years ago I could have avoided a world of drugs.

Chicken, can you remind me your original reason for being put on meds?

Ya, I needed a good trauma therapist and my hormone imbalance corrected.

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'm grateful you're here on SA supporting yourself and others. Your story should never happen to anyone. And you weren't even on the meds for psychiatric reasons.

 

Thank you, that's very sweet.  Nothing should have happened to ANYONE here.  I think mental health issues are epidemically overdiagnosed and I would hazard to bet that probably only 1% of people out there have true schizophrenia or psychosis that is severe enough to possibly justify medication.

 

I feel like the people here who I have met who talk about the psychiatric reasons they were put on meds all seem like wonderful people who were suffering from things that could have been helped with enough time, patience, and support from resources OTHER than medication.   

 

I soooo agree. If I had known about magnesium years ago I could have avoided a world of drugs.

 

 

Chicken, can you remind me your original reason for being put on meds?

 

I was put on them for anxiety. Some of my anxiety was pretty bad, even without meds. Magnesium helped so much when I went through my Cipro/Remeron event, leading me to believe that it would have helped all along without meds.

Prozac 1999-2009 quit semi cold turkey.

 

2012 Placed on Seroquel 25 mg, Tranxene (Clorezepate) 3.75 mg 3x a day, Remeron 30 mg for anxiety/akathesia.

 

Weaned off Seroquel and Tranxene .to Remeron 15 Mg.

In May 2014 tried quitting Remeron at its lowest dose. Had severe withdrawals.Reinstated Remeron at 30 mg by doctor. August 5 2014 entered hospital. Doctor pulled the Remeron and bridged it to Pamelor (Nortriptyline) 40mg and Zyprexa 2.5mg.After removing the Remeron all my bad symptoms went away and I am stable.

 

9/11/14 - 7.5 mg tranxene, 40mg Pamelor, Zyprexa 2.5mg

12/29/14 -  20mg Pamelor, 1/6/15,  7/31/15 3.5mg, 8/10/15 3.2 mg, 9/15/15 2.2mg, 10/15/15 1.8mg

(Feb 2016 - 1.4mg Pamelor only -  OFF OF TRANXENE AND ZYPREXA SINCE DEC 2014 BENZO FREE Since 2014. Nortrityline (Pamelor) .8mg Aug 2016

March 2017 DRUG FREE

Link to post
  • Moderator Emeritus

Not quite as bad as it sounds. The worst for me was probably the first year. It took both of my parents in two separate nursing homes at the same time and dying 5 years later to stress me enough to bring it back temporarily.

 

Knit, does it ever come back anymore at high times of stress?  I am stunned and scared that it was still able to happen five years later.    

**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'm grateful you're here on SA supporting yourself and others. Your story should never happen to anyone. And you weren't even on the meds for psychiatric reasons.

 

Thank you, that's very sweet.  Nothing should have happened to ANYONE here.  I think mental health issues are epidemically overdiagnosed and I would hazard to bet that probably only 1% of people out there have true schizophrenia or psychosis that is severe enough to possibly justify medication.

 

I feel like the people here who I have met who talk about the psychiatric reasons they were put on meds all seem like wonderful people who were suffering from things that could have been helped with enough time, patience, and support from resources OTHER than medication.   

 

I soooo agree. If I had known about magnesium years ago I could have avoided a world of drugs.

 

 

Chicken, can you remind me your original reason for being put on meds?

 

I was put on them for anxiety. Some of my anxiety was pretty bad, even without meds. Magnesium helped so much when I went through my Cipro/Remeron event, leading me to believe that it would have helped all along without meds.

 

 

Wow...

**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

 

 

Not quite as bad as it sounds. The worst for me was probably the first year. It took both of my parents in two separate nursing homes at the same time and dying 5 years later to stress me enough to bring it back temporarily.

Knit, does it ever come back anymore at high times of stress? I am stunned and scared that it was still able to happen five years later.

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

No, it does not come back. Even withdrawal has not brought it back. I have had tremors, but these are mainly in my upper body, and not the same.

 

I also had considerable nerve damage, which I still have deficits from, but I also continued to see improvements in that area for well over 5 years. The common thought with that is you see whatever improvement you're going to see in two years--not true--not even close.

 

((Hugs))

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

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