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WiggleIt: tardive dyskinesia from TCAs and benzo rapid tapers


WiggleIt

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Hi Y'all!  Wow, I don't even know where to begin....

I've been super reticent on here and very absent from the whole site because, frankly, I've had a terrible past two years.  None of it has been directly WD-related, although I have to acknowledge that the permanent physical side effects of the psych meds have made it more challenging for me to heal from normal things, the way I used to heal normally before psych meds.

The skin disorder is still present on my face.  I've been wearing flu masks for two years to cover it up; ironically, now EVERYONE is wearing face masks because of COVID-19.  The face skin disorder was most likely not an effect of psych meds, but it's possible that the psych meds made me a little more vulnerable to developing it.  Most people in my skin disorder support group do not have psych meds or psych med WD in their history; we all do share a common risk factor, but it's not psych meds.  So... that's that.  My face skins may be stuck this way forever, and that's just that.  Who knows, though?  Maybe I'll get a miracle.  After all, I never thought I'd heal as much as I did from psych meds, but I did.  So... maybe someday I'll have a normal face again.  

I really couldn't sit at a desk to type for the majority of 2019, which is why I was just gone from SA.  My ruptured disk and sciatica were so intense that I could not physically do it.  I never ended up getting the steroid injection into my back, simply due to my intense fear that I might have an adverse reaction.  I think you all know how delicate our bodies remain, even after we recover from WD, and the fear of the unknown with news meds can be very intense.  Because of the lack of injection, my back improvement has taken a solid yea, and it's still not totally 100%.  The sciatica still flares if I'm not careful, but I'm no longer immobile from it.  Nobody in my life could believe that I was just white-knuckling it through that kind of pain, but... I did.  It's been a long road.  Every time I thought my back had turned a corner... BLAM.  I ended up laying on the floor again immobilized.  That hasn't happened in about two months, though, so... here's hoping!  And it's a really good sign that I can sit at my desk without flaring up again within 15 minutes.

Had I been a normal person without WD in my medical background, I'd have just gotten the steroid injection and been done with it.  I do feel I made the right decision for my body by not getting it at that point.  If things ever get worse again, I may have to reconsider—but, for now, I'm going to hope things just get better.  I'm not anti-medicine; I simply now know that I have to be careful about which medicines I take, why, and when—especially as a WD survivor. 

Okay, I'm going to try to answer back some of the individual questions that y'all have asked me.  Hoping to help with some modding again, but I currently can't, as one of my elderly parents is quite ill.  It's my turn to help them the way they helped me in my time of medical need during WD.  Until I can make sure my parent is better, I won't be able to concentrate on much else. 



 

Edited by WiggleIt

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

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

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

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

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

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

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

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

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

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

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  • Moderator Emeritus
On 2/4/2020 at 6:28 PM, Melissa5000 said:

Hello Wigglelt how are you?

 

How is your back pain now? 

 

Maybe by now you are allowed to start modest movement or low key exercise?

I can recommend the book Healing back pain by doctor John E Sarno. You can also find him on you tube. He died unfortunatelly. But I learned a lot from his books.

 

I have acne. I treat it with tea tree oil or CBD skin oil. I read it can help with many other skin problems too. Did you try these? 

 

Once in withdrawal I had a bad skin dissease I never had before.Pityriasis lichenoides chronica.  It was a very bad looking one with big  red dots on my belly, butt and upper legs. It shows up in autumn and winter. When I slowed down my taper it did not come back,  only a tiny bit for 2 months in the next winter. This year it was not there anymore in winter. The dermatologist said I would possibly have the dissease for ever as it was a chronic one! But it improved and now it has gone! In withdrawal our immunesytem  does not work at its best. So it is still quite possible your EC infection on your lips will heal when you are further out. Keep the faith! 

 

I wish you lots of healing! You have gone through so many. You are so brave! You are a big inspiration for me! 



Hi Melissa5000,

Thank you for asking!!!  I just wrote an update.  I've had a couple of months without a back flare, so I'm hoping that pattern continues on a good uphill :) 

Thank you SO much for your inspiring words about your skin <3 I am thrilled you imporoved, and I'll keep you in mind as hope and inspiration.

Love,
Wiggle

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

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

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

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

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

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

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

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

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

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

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  • Moderator Emeritus
On 10/27/2019 at 2:26 AM, composter said:

Hey WiggleIt, just came across your thread. Your support for others is very palpable, and I hope you have been treating yourself with the same kindness and patience. Totally fine to step away from the site to focu on your on well-being.

 

The pain sounds awful. And for the staph infection on the lips, I’m sure you’ve tried so many things at this point. If I could gently suggest something: ff the top of my head, I wonder if you’ve tried Manuka honey? Manuka honey in particular has very potent antibacterial activity, and has been proven  in some clinical trials to treat skin infections just as well, if not better than ABs (I believe staph included). It’s a thought, if you wanted to look into it and consider trying it. You can usually find it at Whole Foods and sometimes Trader Joe’s.


Hi composter,

Thank you so much for the Manuka tip!  I love the stuff and do use it internally and externally.  Sadly, it has made no difference on the skin disorder, but it's so nourishing overall that I do use it as a consistent part of my inner and outer nutrition.  Thank you <3 

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

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

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

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

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

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

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

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

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

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

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  • Moderator Emeritus
On 4/1/2020 at 12:09 PM, Leo1983 said:

@WiggleIt

 

Hi,

I see in 2018 you state your Anhedonia eventually healed. How long did that take?

 

Keep Safe

 

Regards

 

Leo

 


Hi Leo1983,

Okay, I will be honest that I don't totally remember, but it was looooong.  I actually kept very detailed symptom diaries, but I am unable to look that info up at exactly this moment.  Goodness, for it to heal 100% took well more than a year for NO remnants of anhedonia to ever come back.  My mental/emotional side effects took years to heal completely.  Years.  It was windows and waves... and then... all windows in my heart and mind again eventually.

I am so sorry that I do not have my notes handy right now to look up the exact timeline for you, but please do know that it got better and better and better... and then I was me again.  Just WOW!  Good "wow," I mean :)

**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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  • Administrator

So good to see you again, WiggleIt. As ever, your fortitude is extraordinary.

 

Are you doing exercise for your back? I've had to do them for years to avoid sciatica.

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
5 hours ago, Altostrata said:

So good to see you again, WiggleIt. As ever, your fortitude is extraordinary.

 

Are you doing exercise for your back? I've had to do them for years to avoid sciatica.

 
Hi Alto!  Yes, I am able to do exercises for my back!  I was in such severe shape that I was not able to start the PT for my sciatica until late into 2019; I tried earlier, but the therapist told me I was in too bad of shape to even tackle the basics.  After waiting a long while, I was finally able to re-engage with PT :)

Yeesh on everything, right?  LOL.

**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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  • Administrator

Yeeesh is right! Glad you're doing better.

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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JackieDecides
On 4/21/2020 at 4:42 PM, WiggleIt said:

After waiting a long while, I was finally able to re-engage with PT

 

I'm so glad! nice to see you, WiggleIt! 

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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JackieDecides
On 4/21/2020 at 4:36 AM, WiggleIt said:

Hoping to help with some modding again, but I currently can't, as one of my elderly parents is quite ill.  It's my turn to help them the way they helped me in my time of medical need during WD.  Until I can make sure my parent is better, I won't be able to concentrate on much else. 

 

everyone understands that, I'm sure. big hugs to 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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Melissa5000

Hello Wigglelt! Good to hear from you again! 

 

Nice that you help your parents now. 

 

I am happy for you that your back is improving! 

2019 2.1 mg amitriptyline ,15th july 2.1 mg, 22-7 2.09 mg, 29-7 2.08 mg, 5-8 2.09 mg , 7-8 2.1 mg . 2020 Holding at 2.1 mg

2019 125 mg lyrica, 15th july 124,5 mg, 22-7 124 mg, 29-7 123,5 mg, 4-8 124 mg 2020 holding at 124 mg

2015 january building up my medication to 450 mg lyrica and 50 mg amitriptyline for face ache after a rootcanal treatment at the dentist. 2016 february start tapering lyrica from 450 mg to 200 mg 2016 october tapered 25 mg amitriptyline to 25 mg 2017 tapered lyrica from 200 mg to 100 mg 2017 september tapered my last tablet of 25 mg amitriptyline to zero  (horrible muscle pain started) 2018 february tapered lyrica from 100 mg to 75 mg (my muscle pain got worse and I have a lot of nervepain in my arms and legs, sometimes all over musclepain and nerve pain and burning pain) 2018 may reinstated 25 mg lyrica. My current dose is 100 mg lyrica. My pain is still very bad but a little less intense, my mood improved. 2018 since 22th may updose amitriptyline.  9 beads. 2018 june updosing lyrica. 2018 16 th june 125 mg lyrica and 9 beads amitriptyline ( 2mg) Now I'm doing a long hold. I can't taper anymore. Too much pain. I hope to stabilize and improve while holding. I'm trying graded activity to get rid of my pain. 2019 1 jan. Lyrica 125 mg (holding) 2019 1 jan. Amitriptyline tapering from 9 beads to 8 beads (1 jan. 2019),  8,5 beads (5 jan 19), 9 beads (16 jan 19) tapper attempt failed

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  • Moderator Emeritus

My PT offices are currently closed, but I had a good session today at home by myself.  My back had a mini-flare two nights ago, but nowhere near the immobilization that it used to cause!  I rested it yesterday and did gentle PT today.

My parent is still fighting their infection, but is slowly improving.  Fingers crossed they keep getting better and better!  There is a 20% relapse rate in elderly folks for this particular infection, but I'm praying my parent does not relapse at all.

I hope you're all doing well!  Thank you for all your support <3 Looking so forward to better times ahead soon and to help out again.  

Edited by WiggleIt

**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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  • 1 month later...

Hi @WiggleIt -- Out of curiosity, did you hair/eyelashes/eyebrows ever grow back? Thanks :)

PRN = as needed; WDR = withdrawal reaction; ADR = adverse reaction

2007: Started BC pills  2008: Prozac 0 --> 80 mg  2010: Tapered Prozac 80 --> 0 mg  2015: LSD/shrooms/MDMA once; Xanax 0.25 mg PRN; Prozac 0 --> 40 mg; Lamictal 0 --> 150 mg  2018: Tapered Prozac 40 --> 0 mg (WDR); Klonopin 0.125 mg PRN  2019: DC'd BC pills (WDR); Klonopin 0.125 mg PRN; tapered Lamictal 150 --> 35 mg (WDR); Trileptal 0 --> 4 mg 

2020: Jan: one BC pill (ADR + hormonal effects); Apr-Jun: curcumin cream daily + Elidel cream PRN (ADR + hormonal effects); Jul: 100 IU vitamin D (ADR); Oct: started melatonin 0.375 mg; Nov: acupuncture treatment (ADR + hormonal effects)

Current medications: Lamictal 35 mg, Trileptal 4 mg, melatonin 0.375 mg 

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  • 3 months later...
JackieDecides

@WiggleIt I came to see how you are doing and you having posted for awhile. Thinking about you and hope things are OK. ❤️

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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  • 3 months later...
  • Moderator Emeritus
On 6/18/2020 at 6:47 PM, Emma7855 said:

Hi @WiggleIt -- Out of curiosity, did you hair/eyelashes/eyebrows ever grow back? Thanks :)


 

Hi Emma7855,

 

Yes, they did! My hairline is a little thinner than in my youth and so are my lashes, but they DID come back after WD, which I had lost hope about for a long time. It was terrifying to watch chunks of eyelashes and eyebrows fall out, but it eventually stabilized. I believe it got better because of a couple of simple dietary changes. I had been trying to follow those very strict autoimmune protocol diets that tell you to chop out dairy, chop out dairy, and chop out soy. Based on what I observed in my own body, that was absolutely the wrong thing for me to do.
 

I bolstered my iron intake by adding organic, unsulfured blackstrap molasses to my diet. I also re-incorporated whole milk and re-incorporated soy milk. I tried to get as much sunshine as I could. Those things seemed to make a big difference for me to get my hair back! Also, I used castor oil on my brows. Like I said, my hairline is maybe a tiny bit thinner than when I was in my 20s, but I’m middle-age now, and I can tell you for sure that my hair and browse and lashes are way better than during withdrawal. I haven’t seen an actual chunk fall out in years.

 

I completely believe that auto immune protocol diets help people. There are simply too many stories out there for everybody to be lying. But I also have come to believe that people have to listen to their own individual bodies. For me, cutting out soy and cutting out dairy made my hair loss worse, so I just did my best to think back on when my hair was great and thick and healthy, and that’s what led me to decide to add back soy and whole milk. Plus, I knew from blood test that I was a little bit low on iron, and I knew from withdrawal sensitivity that I didn’t do well with iron supplements. That’s why I ended up using Blackstrap Molasses, a natural source of iron. 
 

I decided to use castor oil because I’d read so many good things about it, but it was just way too thick to use near my eyes. It was also so sick that it seemed to break the hair on my head off at the hairline, so that’s why I just stuck to using it on my eyebrows.

 

oh, and I also used Rosemary oil mixed with ha ha but oil on my scalp about once a week! I found some medical journal articles that said that rosemary oil can stimulate follicles and tiny blood vessels in the scalp, which can promote hair growth. It was a natural, so I figured I’d give it a shot. 40 drops of jojoba oil to 10 drops of rosemary oil mixed in a jar. Massage it into my roots and scalp, left it on for 45 minutes, then Cham puRosemary oil mixed with ha ha but oil on my scalp about once a week! I found some medical journal articles that said that rosemary oil can stimulate follicles and tiny blood vessels in the scalp, which can promote hair growth. It was a natural, so I figured I’d give it a shot. 40 drops of jojoba oil to 10 drops of rosemary oil mixed in a jar. Massaged it into my roots and scalp, left it on for 45 minutes, then shampooed it out.

 

The oils I was using helped with regrowth, but hair would still fall out until I reincorporated soy, whole milk, and added Blackstrap Molasses. It seems that regrowth was stimulated by oils, but the internal stability that prevented hair from falling out again was where the small dietary adjustments were key.
 

listen to your body, always. It often tells you where you need to go. If I had kept on following the auto immune protocol diet without dairy or soy, then who knows how much worse my withdrawal-triggered hair loss would have gotten. I’m so happy that diet works for other people; it just didn’t happen to be the ticket for me.

Edited by WiggleIt

**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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  • 4 weeks later...

If you don’t mind, if it does not cause ptsd.. can you tell me what your tongue twitches were like? Small hot spots? Frequency? Did your tongue feel strange? What was the twitch like? I am having issues with tongue twitching since doing a poorly thought out prozac bridge even though I am at a low dose. I want off it for many reasons but mostly this reason, but also feel I need to taper extremely slowly due to already feeling withdrawal and severe depression after a less than ten percent decrease.  I too have pelvic and bladder issues which I feel got slightly worse since starting the prizac 6 months ago. You can post it in my thread so

i don’t hijack yours. I am so happy you for you to have gotten better. I still have a long road of tapering and then healing. And I can’t stabilize in the stupid Prozac . It’s not the med that gave me withdrawal , it’s the one I switched to to fix the withdrawal which has not helped and now giving me td type symptoms. But another med change is scary and risky too as well as a fast taper so feel stuck. 


2000-2017Paxil 40 mg and Zoloft usually 100 mg most these years

2018-1.5 year pooped out reinstatement of Zoloft 100.

feb 2020 lexapro 10 mg but developed tinnitus and palls. taperoff lex in June

9/22/20: dropped 2.5 mg lexapro to 0 and started 10 mg Prozac Akathisia and insomnia and worse depression began after dropping to 2.5 (be4 starting Prozac) .

 9/20:  6 weeks intermittent but consistent Ativan and klonopin
10/22/20: last dose of klon

and dropped to 8 mg prozac

12-19-20: decreased Prozac to 7.4 
1-5-21: 7.68 prozac with adv effects so  1-7-21: back to 7.4 1-18/21: 7.2 and 1/25/21: 6.95 2/1: 6.8

 

 

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