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WiggleIt: Tardive dyskinesia & dystonia from TCAs/nortriptyline/desipramine; rapid taper & benzo trouble, too


WiggleIt

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Happy New Year, @WiggleIt    I hope things are going well with you. 

Currently taking Ramapril (blood pressure) 5 mg twice a day

Omeprazole 10 mg AM and 20 mg PM  (the taper has gone nowhere after the first cut)

Famotidine   once a day (and I still needs tums sometimes)

magnesium 200 mg at night

as of yesterday 2 fish oil capsules "EPA-DHA 1000"

 

off Lexapro as of 5/2018  - last dose had been 5 mg every other day for a couple years

 

highest dose had been 20 mg at which point I was diagnosed with Bipolar II, which went away when I cut the lexapro down to 15 mg. 

 

I spent years on Paxil before Lexapro (can't remember dose), briefly on Effexor and Abilify and others I have forgotten. in fact, when I was diagnoses with BPII I was put on all kinds of things which made me feel so bad I stopped them cold turkey within maybe 3 or 4 weeks, thank goodness. since then I've known these pills were terrible and I weaned down the Lexapro with zero help or support over I'm not sure how many years. 

 

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  • 2 weeks later...
  • Moderator Emeritus

Hi Wigglelt, 

 

I was just wondering how you’re doing? Did you go on the low histamine diet, or is that a future goal? Sending hugs🤗

Been on APs, benzos, ADs and opiates, for chronic pain. Had Akathisia in the past that made me suicidal. Still on Seroquel. 2019:➡️ March10=7.25mg ✔️ April17=7.0✔️ June5=6.75✔️ July14=6.50✔️ Aug28=6.25✔️ Oct10=6.20  ✔️ Oct21=6.0✔️ Dec16=5.80 ✔️ 2020➡️ Jan 21=5.60 ✔️ April2=5.40 ✔️ May29=5.20 ✔️ Aug14= 5.0 ✔️Sep29=4.80✔️2021➡️ Jan31=4.60 mg✔️ April24=4.40mg✔️Jul17=4.30mg ✔️ Aug 28=4.20 ✔️ Oct 11=4.15✔️Nov1=4.10 ✔️ Nov21= 4.05✔️ Dec13= 4mg ✔️2022 ➡️ Jan8=3.95✔️ Jan31=3.90✔️ March2=3.85 ✔️ April4=3.80 ✔️ June16=3.75✔️ July26=3.70✔️ Sep2=3.65✔️ Oct21=3.60 ✔️ Dec8=3.55✔️2023➡️ Jan 26=3.50✔️ March 17=3.45✔️ June12=3.40✔️ July30=3.35✔️ Sep14=3.30✔️ Oct31=3.25✔️This is NOT medical advice.Consult your doctor.

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On 12/31/2018 at 1:21 AM, Wishes19 said:

Hi Wiggleit,

 

I’m sure you and your doctors have thought of this already — and maybe you’ve looked into this — but when I hear about skin and hair stuff together, vitamin deficiencies come to mind. B7 (Biotin) deficiency can cause cheilitis and alopecia together, and I believe that zinc, B2, B3, and iron deficiencies can as well.

 

Since you mentioned having difficulty eating prior to the cheilitis, I wonder if dietary changes you had to undergo could have led to a micronutrient deficiency....stranger things have happened!

 

I’ve followed your progress along for a few years. I am struck by the positivity and humor that come out in your writings, despite all you’ve been through. You are such a bada**.  I am sorry you’ve been through these ordeals. I hope 2019 brings a good butt-whippin’ to all this stuff.

 

 

 

 


Hi Wishes!  Thank you so much for the feedback.  Yes, I've had my serum blood and micronutrient blood cell exams to check for vitamin deficiencies, and stuff is popping up pretty okay with vitamins and minerals.  It's much better now than it was years ago when I was in acute WD.  Because I've had such bad luck with supplements, I just had to address things dietarily over the years, but, apparently, I haven't done too terrible of a job, because I've actually raised some levels since acute WD!

My iron is still a bummer, though, and I cannot take iron supplements because those slam me back into waves.  Not long waves (like, just a few hours), but holy heck is that NOT anything I ever want to experience again.  I eat meat and use blackstrap molasses and just hope for the best.  And I have an army of false eyelashes and glue ready to go if I ever need them.  

I had a massive chunk of lashes fall out and stay bald for a good month, then they just decided to grow back, thank God.  They're not as awesome or thick as they used to be, but at least they came back!

Also, my cheilitis seems to be taking a turn for the better, but I'm kind of afraid to jinx myself by talking about it.  I'm really hoping I can post a positive update about that sooner rather than later!  

It's a relief to hear that I sometimes manage to be funny on here :)  I hope so!  I just love this forum.  I can't imagine my life without it!  

*I'm not a doctor and don't give medical advice, just 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
-7 years off: Huge improvements, incl. improved dystonia

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On 1/1/2019 at 7:38 AM, JackieDecides said:

Happy New Year, @WiggleIt    I hope things are going well with you. 

 

Hi JackieDecides!

Sorry for the radio silence!  Between the holidays and a winter bug that loves me too much to leave my face, I've been offline for a while.  I hope your New Year is wonderful so far!

*I'm not a doctor and don't give medical advice, just 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
-7 years off: Huge improvements, incl. improved dystonia

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Hi Wigglelt:

 

I finally answered your PM in January. I never got notice that you had written me. I apologize for that.

 

How is the weather where you are in Colorado? We got a snowstorm a couple of weeks ago. The 1st one since before Christmas, and now we are going to be in the 60’s this weekend.

 

I would love to have some snow. It’s not summer yet lol...

 

Anyway, answer me when you get time.

 

Hope you are doing better 😊

 

Take care,

Frogie xx

PREVIOUS medications and discontinuations: Have been on medications since 1996. 

 Valium, Gabapentin, Lamictal, Prilosec and Zantac from 2000 to 2015 with a fast taper by a psychiatrist.

 Liquid Lexapro Nov, 2016 to 31-March, 2019 Lexapro free!!! (total Lexapro taper was 4 years-started with pill form)

---CURRENT MEDICATIONS:Supplements:Milk Thistle, Metamucil, Magnesium Citrate, Vitamin D3, Levothyroxine 25mcg, Vitamin C, Krill oil.

Xanax 1mg 3x day June, 2000 to 19-September, 2020 Went from .150 grams (average weight of 1 Xanax) 3x day to .003 grams 3x day. April 1, 2021 went back on 1mg a day. Started tapering May 19, 2023. July 28, 2023-approximately .87mg. Dr. fast tapered me at the end and realized he messed up. Prescribe it again and I am doing "slower than a turtle" taper.

19-September, 2020 Xanax free!!! (total Xanax taper was 15-1/2 months-1-June, 2019-19-September, 2020)

I am not a medical professional.

The suggestions I make are based on personal experience.

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My SA peeps!  I have some REALLY happy news, which is that I'm one of the new mods on this site now!  It's a recent development, and I'm taking a few days to orient myself to the duties.  Please bear with me during this week as I figure out this new step.
 

Also... I hope to have a happy update about yet another bit of progress that I've been having physically!  I don't want to jinx it by blowing the lid off the news too soon, but there has been major improvement over the past month on one of the physical roadblocks I've been dealing with!  

*I'm not a doctor and don't give medical advice, just 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
-7 years off: Huge improvements, incl. improved dystonia

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:)💕💐

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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  • Moderator Emeritus

Hi Wigglelt, 

 

I’m glad you’ve had improvements. Look forward to hearing about them. Welcome to the mod squad.😃💚

Been on APs, benzos, ADs and opiates, for chronic pain. Had Akathisia in the past that made me suicidal. Still on Seroquel. 2019:➡️ March10=7.25mg ✔️ April17=7.0✔️ June5=6.75✔️ July14=6.50✔️ Aug28=6.25✔️ Oct10=6.20  ✔️ Oct21=6.0✔️ Dec16=5.80 ✔️ 2020➡️ Jan 21=5.60 ✔️ April2=5.40 ✔️ May29=5.20 ✔️ Aug14= 5.0 ✔️Sep29=4.80✔️2021➡️ Jan31=4.60 mg✔️ April24=4.40mg✔️Jul17=4.30mg ✔️ Aug 28=4.20 ✔️ Oct 11=4.15✔️Nov1=4.10 ✔️ Nov21= 4.05✔️ Dec13= 4mg ✔️2022 ➡️ Jan8=3.95✔️ Jan31=3.90✔️ March2=3.85 ✔️ April4=3.80 ✔️ June16=3.75✔️ July26=3.70✔️ Sep2=3.65✔️ Oct21=3.60 ✔️ Dec8=3.55✔️2023➡️ Jan 26=3.50✔️ March 17=3.45✔️ June12=3.40✔️ July30=3.35✔️ Sep14=3.30✔️ Oct31=3.25✔️This is NOT medical advice.Consult your doctor.

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❤️❤️❤️❤️

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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4 hours ago, WiggleIt said:

I'm one of the new mods on this site now

 

Congrats!  You deserve it!

 

4 hours ago, WiggleIt said:

I hope to have a happy update about yet another bit of progress that I've been having physically

 

Can't wait to hear ...

 

All the best.

PAST

Gabapentin:  about 6 months in 2015, 300-900 mg, cold turkeyed Sept 2015 (at same time dc'd Klonopin)

Klonopin: June 2014- Sept 2015; 1mg tapered over 6 mths, dc'd at 0.25mg, withdrawal hellish (perhaps because of concurrent dc of gabapentin)

Mirtazepine: Jumped off at 2.4 mg. (stable in 8 months).

Seroquel:  June 14 - July 24, 2016, 25 mg alternate nights; smaller doses for shorter periods. Total use about 3 months 

Lamictal: March 19, 2018 - 1 mg; March 23 - 1.25 mg; April 6 - 2mg. Discontinued at 2 mgJuly 1, 2018 due to Steven Johnson Syndrome.

 

CURRENT

Supplements: Vit D, turmeric

Naturethroid: 65 mcg for hypothyroidism

Trazodone: Oct 2015 - June 2016; 75 mg tapered over 2 mths, intense w/d after 3 weeks. Reinstatement: 07/25/16 - 25 mg; updosed 08/03/16 - 50 mg;  10/01/16-  62mg; 03/24/17 dropped to 50 mg (stable in 2.5 months)

                           Current psych meds: Trazodone 50 mg

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5 hours ago, WiggleIt said:

My SA peeps!  I have some REALLY happy news, which is that I'm one of the new mods on this site now!  It's a recent development, and I'm taking a few days to orient myself to the duties.  Please bear with me during this week as I figure out this new step.
 

Also... I hope to have a happy update about yet another bit of progress that I've been having physically!  I don't want to jinx it by blowing the lid off the news too soon, but there has been major improvement over the past month on one of the physical roadblocks I've been dealing with!  

 

Hi Wigglelt, Congratulations on becoming a mod and for your good physical news as well.    Best wishes to you

G.

  

Hydrochlorothiazide 25 mg, Multi vit., Calcium, D3,  Magnesium, Fish Oil, Melatonin,  Ambien 3.3 mg 1 or 2X/mo.  Benadryl-seldom, .......2002 - eliminated alcohol

2002- Paxil - 20 mg (3 WD attempts: 2005, 2008, 2010)

2011 - 30 mg 

2018 - 40 mg- Sept to Nov} {Dec - 37.5}

Jan 2, 2019 - 35 mg

Jan 11 -  33.75 mg

Jan 28 - 32.5 mg

Feb 4 -  33.75 mg 

Mar 4 - 32 mg

Mar 30 - 30 mg

 

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14 hours ago, WiggleIt said:

there has been major improvement over the past month on one of the physical roadblocks I've been dealing with!  

 

oh, boy!!! 😊

Currently taking Ramapril (blood pressure) 5 mg twice a day

Omeprazole 10 mg AM and 20 mg PM  (the taper has gone nowhere after the first cut)

Famotidine   once a day (and I still needs tums sometimes)

magnesium 200 mg at night

as of yesterday 2 fish oil capsules "EPA-DHA 1000"

 

off Lexapro as of 5/2018  - last dose had been 5 mg every other day for a couple years

 

highest dose had been 20 mg at which point I was diagnosed with Bipolar II, which went away when I cut the lexapro down to 15 mg. 

 

I spent years on Paxil before Lexapro (can't remember dose), briefly on Effexor and Abilify and others I have forgotten. in fact, when I was diagnoses with BPII I was put on all kinds of things which made me feel so bad I stopped them cold turkey within maybe 3 or 4 weeks, thank goodness. since then I've known these pills were terrible and I weaned down the Lexapro with zero help or support over I'm not sure how many years. 

 

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  • ChessieCat changed the title to WiggleIt: Tardive Dyskinesia from TCAs and benzo rapid tapers

That’s fantastic news WiggleIt!! 

 

Congratulations on your modship. You’re going to be great!! 

 

And so happy to hear about your physical improvements as well.

 

Best wishes, and may things continue to improve for you 🙏🏻

 

Started on Effexor 75 immediate release 1/2015. Took it once a day, which was the way the doctor prescribed it.  

Stopped Effexor after taking it for 4 months; fast taper over 3-4 weeks;  5/2015-6/2015

Daily "brain zaps" and other neurological symptoms  (vertigo, dizziness, headaches, ticking in left ear) without improvement since stopping Effexor, starting early 6/2015

Brain zaps and other neurological changes for about 16 months, then decided to go back on Effexor, 9/2016

Symptoms disappeared on Effexor 112.5 mg (I ramped up from 37.5 to see what would work)

Slow taper back down.  Brain zaps recurred especially below 75 mg.  

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14 minutes ago, xyz said:

she should update her signature.

replace  "4 years off, never fully healed"  with "4 years off, healing each day" kinda thing

 

* NO LONGER ACTIVE on SA *

MISSION ACCOMPLISHED:  (6 year taper)      0mg Pristiq  on 13th November 2021

ADs since ~1992:  25+ years - 1 unknown, Prozac (muscle weakness), Zoloft; citalopram (pooped out) CTed (very sick for 2.5 wks a few months after); Pristiq:  50mg 2012, 100mg beg 2013 (Serotonin Toxicity)  Tapering from Oct 2015 - 13 Nov 2021   LAST DOSE 0.0025mg

Post 0 updates start here    My tapering program     My Intro (goes to tapering graph)

 VIDEO:   Antidepressant Withdrawal Syndrome and its Management

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On 2/6/2019 at 3:22 AM, ChessieCat said:

 

 

Eerie timing for you to say I should update my sig, because I just did about a split second before I saw your comment! YES!!

Edited by WiggleIt

*I'm not a doctor and don't give medical advice, just 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
-7 years off: Huge improvements, incl. improved dystonia

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  • 2 weeks later...
  • Moderator Emeritus

I will be back modding around the site this weekend!  Had two doc appointments this past week and was too burned out to be helpful.  Hope everyone is hanging in here.

*I'm not a doctor and don't give medical advice, just 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
-7 years off: Huge improvements, incl. improved dystonia

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  • Moderator Emeritus

Hi Wigglelt, 

 

I hope all went well with your doctors appointments💚

Been on APs, benzos, ADs and opiates, for chronic pain. Had Akathisia in the past that made me suicidal. Still on Seroquel. 2019:➡️ March10=7.25mg ✔️ April17=7.0✔️ June5=6.75✔️ July14=6.50✔️ Aug28=6.25✔️ Oct10=6.20  ✔️ Oct21=6.0✔️ Dec16=5.80 ✔️ 2020➡️ Jan 21=5.60 ✔️ April2=5.40 ✔️ May29=5.20 ✔️ Aug14= 5.0 ✔️Sep29=4.80✔️2021➡️ Jan31=4.60 mg✔️ April24=4.40mg✔️Jul17=4.30mg ✔️ Aug 28=4.20 ✔️ Oct 11=4.15✔️Nov1=4.10 ✔️ Nov21= 4.05✔️ Dec13= 4mg ✔️2022 ➡️ Jan8=3.95✔️ Jan31=3.90✔️ March2=3.85 ✔️ April4=3.80 ✔️ June16=3.75✔️ July26=3.70✔️ Sep2=3.65✔️ Oct21=3.60 ✔️ Dec8=3.55✔️2023➡️ Jan 26=3.50✔️ March 17=3.45✔️ June12=3.40✔️ July30=3.35✔️ Sep14=3.30✔️ Oct31=3.25✔️This is NOT medical advice.Consult your doctor.

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4 hours ago, WiggleIt said:

Had two doc appointments this past week and was too burned out to be helpful.

 

I hope you are feeling better. 🤗

Currently taking Ramapril (blood pressure) 5 mg twice a day

Omeprazole 10 mg AM and 20 mg PM  (the taper has gone nowhere after the first cut)

Famotidine   once a day (and I still needs tums sometimes)

magnesium 200 mg at night

as of yesterday 2 fish oil capsules "EPA-DHA 1000"

 

off Lexapro as of 5/2018  - last dose had been 5 mg every other day for a couple years

 

highest dose had been 20 mg at which point I was diagnosed with Bipolar II, which went away when I cut the lexapro down to 15 mg. 

 

I spent years on Paxil before Lexapro (can't remember dose), briefly on Effexor and Abilify and others I have forgotten. in fact, when I was diagnoses with BPII I was put on all kinds of things which made me feel so bad I stopped them cold turkey within maybe 3 or 4 weeks, thank goodness. since then I've known these pills were terrible and I weaned down the Lexapro with zero help or support over I'm not sure how many years. 

 

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Hi Wigglet your recovery is inspiring. Did you have akathisia?

2009-2010 Citalopram 20mg CT no problems

 

Sertaline 2010- 6monnths

 

2011- 2017 June 2017- Citalopram 20mg CT

 

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  • Moderator Emeritus
On 2/23/2019 at 6:09 AM, JackieDecides said:

 

I hope you are feeling better. 🤗


Thanks!  I am, but I feel super-guilty for not logging in sooner to help out around the site.  I pushed myself (not in a bad way) recently, and definitely needed some R and R!

Also had to add an additional doc appt bc of of some unexpected technical trouble with my TRTs (the reverse hearing aids I use for my tinnitus).  

*I'm not a doctor and don't give medical advice, just 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
-7 years off: Huge improvements, incl. improved dystonia

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  • Moderator Emeritus
On 2/28/2019 at 2:45 AM, jonnypeters1234567 said:

Hi Wigglet your recovery is inspiring. Did you have akathisia?


Hi jonnypeters!

I suffered bouts of aka, but not chronic aka.  It's been YEARS since I experienced any aka :)

*I'm not a doctor and don't give medical advice, just 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
-7 years off: Huge improvements, incl. improved dystonia

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  • Moderator Emeritus
On 2/23/2019 at 2:32 AM, Carmie said:

Hi Wigglelt, 

 

I hope all went well with your doctors appointments💚


Thank you, Carmie!  No bad news, just maintenance stuff :)

 

*I'm not a doctor and don't give medical advice, just 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
-7 years off: Huge improvements, incl. improved dystonia

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Hey Wiggleit,

 

Have followed your story a bit and you have truly been through it and so pleased that you seem to be significantly better.

 

Not sure where you put yourself at in recovery but I hope a full recovery isn’t far away for you. 

 

Take care.

20mg Lexapro 2007

10mg Lexapro 2012

Started tapering approx (October 2017) 12 months ago  from 10mg to 9mg then 8 then 7 then 6 then 5 then 4 then 3.

Held for approx 4 to 6 weeks min on each reduction.

Hit severe symptoms (started 7th Nov) after dropping to 3mg. Dropped to 3mg approx 22nd October.

Back to 4mg (7th November) and stabilising. Current symptoms started 23rd November 2018

Used diazepam (2018) 10mg 10th Nov, 5mg 11th Nov, 2.5mg 12 Nov, 2mg 13th Nov.

Used diazepam 10mg 24th Nov, 7.5 25th Nov and 5mg 26th November 2018

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6 hours ago, WiggleIt said:

but I feel super-guilty for not logging in sooner to help out around the site

You know what's true for others is also true for you, what would you tell a poster who said that? You would say you can only do what you can do.

Take care of yourself I'm glad to see you back ♥️

Currently taking Ramapril (blood pressure) 5 mg twice a day

Omeprazole 10 mg AM and 20 mg PM  (the taper has gone nowhere after the first cut)

Famotidine   once a day (and I still needs tums sometimes)

magnesium 200 mg at night

as of yesterday 2 fish oil capsules "EPA-DHA 1000"

 

off Lexapro as of 5/2018  - last dose had been 5 mg every other day for a couple years

 

highest dose had been 20 mg at which point I was diagnosed with Bipolar II, which went away when I cut the lexapro down to 15 mg. 

 

I spent years on Paxil before Lexapro (can't remember dose), briefly on Effexor and Abilify and others I have forgotten. in fact, when I was diagnoses with BPII I was put on all kinds of things which made me feel so bad I stopped them cold turkey within maybe 3 or 4 weeks, thank goodness. since then I've known these pills were terrible and I weaned down the Lexapro with zero help or support over I'm not sure how many years. 

 

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  • Moderator Emeritus

WE ARE FINALLY BEING HEARD!!!  The New York Times published an article stating that antidepressant withdrawal is REAL and that safe tapering might take months or years:

https://www.nytimes.com/2019/03/05/health/depression-withdrawal-drugs.html?smid=fb-nytimes&smtyp=cur&fbclid=IwAR1HOBgxTD54vvf-0aiDDkWapx9dZN2FPvZwP4bWMVmHlFg9QGruOUpDAMo

Also, Psychiatric Times medical journal admitted that ONLINE SUPPORT GROUPS KNOW MORE THAN DOCTORS DO about ADs and AD WD:

https://www.psychiatrictimes.com/article/online-communities-drug-withdrawal-what-can-we-learn?fbclid=IwAR3ibCyV9zdT57fTEwDXFq5ySnWcL91rn6mH9ekWGDQDdpm3WY-G3LlLBO4

*I'm not a doctor and don't give medical advice, just 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
-7 years off: Huge improvements, incl. improved dystonia

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  • Moderator
4 hours ago, WiggleIt said:

WE ARE FINALLY BEING HEARD!!!  The New York Times published an article stating that antidepressant withdrawal is REAL and that safe tapering might take months or years:

https://www.nytimes.com/2019/03/05/health/depression-withdrawal-drugs.html?smid=fb-nytimes&smtyp=cur&fbclid=IwAR1HOBgxTD54vvf-0aiDDkWapx9dZN2FPvZwP4bWMVmHlFg9QGruOUpDAMo

Also, Psychiatric Times medical journal admitted that ONLINE SUPPORT GROUPS KNOW MORE THAN DOCTORS DO about ADs and AD WD:

https://www.psychiatrictimes.com/article/online-communities-drug-withdrawal-what-can-we-learn?fbclid=IwAR3ibCyV9zdT57fTEwDXFq5ySnWcL91rn6mH9ekWGDQDdpm3WY-G3LlLBO4

That’s awesome, about time!

PREVIOUS medications and discontinuations: Have been on medications since 1996. 

 Valium, Gabapentin, Lamictal, Prilosec and Zantac from 2000 to 2015 with a fast taper by a psychiatrist.

 Liquid Lexapro Nov, 2016 to 31-March, 2019 Lexapro free!!! (total Lexapro taper was 4 years-started with pill form)

---CURRENT MEDICATIONS:Supplements:Milk Thistle, Metamucil, Magnesium Citrate, Vitamin D3, Levothyroxine 25mcg, Vitamin C, Krill oil.

Xanax 1mg 3x day June, 2000 to 19-September, 2020 Went from .150 grams (average weight of 1 Xanax) 3x day to .003 grams 3x day. April 1, 2021 went back on 1mg a day. Started tapering May 19, 2023. July 28, 2023-approximately .87mg. Dr. fast tapered me at the end and realized he messed up. Prescribe it again and I am doing "slower than a turtle" taper.

19-September, 2020 Xanax free!!! (total Xanax taper was 15-1/2 months-1-June, 2019-19-September, 2020)

I am not a medical professional.

The suggestions I make are based on personal experience.

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17 hours ago, WiggleIt said:

WE ARE FINALLY BEING HEARD!!!  The New York Times published an article stating that antidepressant withdrawal is REAL and that safe tapering might take months or years:

 

 

That is wonderful news WiggleIt.   Thanks for sharing it.  BTW.... How are you feeling now?   Better? So-So? Good?   Let me know.  I am interested in your progress.

G.

  

Hydrochlorothiazide 25 mg, Multi vit., Calcium, D3,  Magnesium, Fish Oil, Melatonin,  Ambien 3.3 mg 1 or 2X/mo.  Benadryl-seldom, .......2002 - eliminated alcohol

2002- Paxil - 20 mg (3 WD attempts: 2005, 2008, 2010)

2011 - 30 mg 

2018 - 40 mg- Sept to Nov} {Dec - 37.5}

Jan 2, 2019 - 35 mg

Jan 11 -  33.75 mg

Jan 28 - 32.5 mg

Feb 4 -  33.75 mg 

Mar 4 - 32 mg

Mar 30 - 30 mg

 

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Hi Wigglet?

 

can you describe what it mentally felt like when you had your dyskenisia reaction. I don't mean the feeling because it was happening. But did it feel like akathisia in a way? I get a build of akathisia that builds and builds and then my arm goes really weak and floppy and starts spasming. Was it like that?

 

thanks

2009-2010 Citalopram 20mg CT no problems

 

Sertaline 2010- 6monnths

 

2011- 2017 June 2017- Citalopram 20mg CT

 

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  • Moderator Emeritus

Hi Wigglelt, 

 

Yes, That article in the New York Times was great, it’s nice to be heard. Thanks for sharing the article from the Psychiatric Times too, I hadn’t seen that one. Let’s hope this gets the ball rolling.

 

Hope you’ve been doing okay, sending hugs🤗

Been on APs, benzos, ADs and opiates, for chronic pain. Had Akathisia in the past that made me suicidal. Still on Seroquel. 2019:➡️ March10=7.25mg ✔️ April17=7.0✔️ June5=6.75✔️ July14=6.50✔️ Aug28=6.25✔️ Oct10=6.20  ✔️ Oct21=6.0✔️ Dec16=5.80 ✔️ 2020➡️ Jan 21=5.60 ✔️ April2=5.40 ✔️ May29=5.20 ✔️ Aug14= 5.0 ✔️Sep29=4.80✔️2021➡️ Jan31=4.60 mg✔️ April24=4.40mg✔️Jul17=4.30mg ✔️ Aug 28=4.20 ✔️ Oct 11=4.15✔️Nov1=4.10 ✔️ Nov21= 4.05✔️ Dec13= 4mg ✔️2022 ➡️ Jan8=3.95✔️ Jan31=3.90✔️ March2=3.85 ✔️ April4=3.80 ✔️ June16=3.75✔️ July26=3.70✔️ Sep2=3.65✔️ Oct21=3.60 ✔️ Dec8=3.55✔️2023➡️ Jan 26=3.50✔️ March 17=3.45✔️ June12=3.40✔️ July30=3.35✔️ Sep14=3.30✔️ Oct31=3.25✔️This is NOT medical advice.Consult your doctor.

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  • 3 weeks later...

Hey Wiggle how are you?  I heard you are now a mod, congrats!  Sorry I didn't answer you a few months back..I  was meaning to get back to you then had some problems come up.

Have you watched the new Anne of Green Gables show?  My Mom and I watched some of it, the photography was amazing..though they did wander away from some of the original stories at points.

 

Hope you are doing well,

 

US

 

 

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

Hi Wigglelt, 

 

Just popping around to say I’m thinking of you and sending you some hugs🤗

Been on APs, benzos, ADs and opiates, for chronic pain. Had Akathisia in the past that made me suicidal. Still on Seroquel. 2019:➡️ March10=7.25mg ✔️ April17=7.0✔️ June5=6.75✔️ July14=6.50✔️ Aug28=6.25✔️ Oct10=6.20  ✔️ Oct21=6.0✔️ Dec16=5.80 ✔️ 2020➡️ Jan 21=5.60 ✔️ April2=5.40 ✔️ May29=5.20 ✔️ Aug14= 5.0 ✔️Sep29=4.80✔️2021➡️ Jan31=4.60 mg✔️ April24=4.40mg✔️Jul17=4.30mg ✔️ Aug 28=4.20 ✔️ Oct 11=4.15✔️Nov1=4.10 ✔️ Nov21= 4.05✔️ Dec13= 4mg ✔️2022 ➡️ Jan8=3.95✔️ Jan31=3.90✔️ March2=3.85 ✔️ April4=3.80 ✔️ June16=3.75✔️ July26=3.70✔️ Sep2=3.65✔️ Oct21=3.60 ✔️ Dec8=3.55✔️2023➡️ Jan 26=3.50✔️ March 17=3.45✔️ June12=3.40✔️ July30=3.35✔️ Sep14=3.30✔️ Oct31=3.25✔️This is NOT medical advice.Consult your doctor.

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Hi wiggelt.

 

Are your issues mainly physical now?

 

Have you recovered from alot of the mental stuff?

 

Hope your ok.

 

Leo

May 2016 - Aug 2016 - Prozac 20mg

 

March 2017 - June 2017 - Sertraline 100mg. Horrific withdrawal 5 m onths.

 

July 2017 - Aug 2017 - Mirtazapine 15mg. Horrific.

 

August 2017 - December 2017 Fluoxetine 10mg for 2 weeks ghen Escitalopram 20mg for 12 weeks. Never felt normal since this. Or baseline.

 

March 2018 - June 2018 - Escitalopram 5mg for 12 weeks. Stopped and here i am full of symptoms i never had.

 

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  • 2 weeks later...
  • Moderator Emeritus

Many apologies for not being able to support members currently.  I'm dealing with a heavy load right now.  In fact, I need a hand.

Can someone please help me and let me know about different experiences with antibiotics?  I'm dealing with a staph infection, a supposedly minor one, but this is not the time to mess about with home remedies.  I know to stay away from fluoroquinolones.

Can anyone tell me about experiences with azithromycin or erithromycin?  Or Keflex?

Any help appreciated.  Of course, I'm worried about flaring dystonia and cognitive decline.   

*I'm not a doctor and don't give medical advice, just 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
-7 years off: Huge improvements, incl. improved dystonia

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Hi:

 

 I’m allergic to anything to do with penicillin. Keflex is in the penicillin family.

 

I know people have problems with z-packs, but all through my taper I never had a problem. It’s synthetic erythromycin.

 

Just my input.

 

Hope you are ok.

 

Take care,

 Frogie xx

PREVIOUS medications and discontinuations: Have been on medications since 1996. 

 Valium, Gabapentin, Lamictal, Prilosec and Zantac from 2000 to 2015 with a fast taper by a psychiatrist.

 Liquid Lexapro Nov, 2016 to 31-March, 2019 Lexapro free!!! (total Lexapro taper was 4 years-started with pill form)

---CURRENT MEDICATIONS:Supplements:Milk Thistle, Metamucil, Magnesium Citrate, Vitamin D3, Levothyroxine 25mcg, Vitamin C, Krill oil.

Xanax 1mg 3x day June, 2000 to 19-September, 2020 Went from .150 grams (average weight of 1 Xanax) 3x day to .003 grams 3x day. April 1, 2021 went back on 1mg a day. Started tapering May 19, 2023. July 28, 2023-approximately .87mg. Dr. fast tapered me at the end and realized he messed up. Prescribe it again and I am doing "slower than a turtle" taper.

19-September, 2020 Xanax free!!! (total Xanax taper was 15-1/2 months-1-June, 2019-19-September, 2020)

I am not a medical professional.

The suggestions I make are based on personal experience.

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WiggelIt,   Please take this staph infection seriously.    Take recommended antibiotics immediately and do what is prescribed to cure it.  

 

  

Hydrochlorothiazide 25 mg, Multi vit., Calcium, D3,  Magnesium, Fish Oil, Melatonin,  Ambien 3.3 mg 1 or 2X/mo.  Benadryl-seldom, .......2002 - eliminated alcohol

2002- Paxil - 20 mg (3 WD attempts: 2005, 2008, 2010)

2011 - 30 mg 

2018 - 40 mg- Sept to Nov} {Dec - 37.5}

Jan 2, 2019 - 35 mg

Jan 11 -  33.75 mg

Jan 28 - 32.5 mg

Feb 4 -  33.75 mg 

Mar 4 - 32 mg

Mar 30 - 30 mg

 

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On 4/16/2019 at 4:02 PM, WiggleIt said:

I'm dealing with a heavy load right now.

 

I'm sorry to hear about the infection, I hope you can get whatever you need to take care of it. I don't know what affects it will have on you but I know you can deal with it. wishing you all the best and hope to hear good news soon. 🤗

Currently taking Ramapril (blood pressure) 5 mg twice a day

Omeprazole 10 mg AM and 20 mg PM  (the taper has gone nowhere after the first cut)

Famotidine   once a day (and I still needs tums sometimes)

magnesium 200 mg at night

as of yesterday 2 fish oil capsules "EPA-DHA 1000"

 

off Lexapro as of 5/2018  - last dose had been 5 mg every other day for a couple years

 

highest dose had been 20 mg at which point I was diagnosed with Bipolar II, which went away when I cut the lexapro down to 15 mg. 

 

I spent years on Paxil before Lexapro (can't remember dose), briefly on Effexor and Abilify and others I have forgotten. in fact, when I was diagnoses with BPII I was put on all kinds of things which made me feel so bad I stopped them cold turkey within maybe 3 or 4 weeks, thank goodness. since then I've known these pills were terrible and I weaned down the Lexapro with zero help or support over I'm not sure how many years. 

 

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