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Wellbutrinsucks: adverse reaction gone wrong

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WiggleIt
On 2/14/2019 at 7:40 AM, Wellbutrinsucks said:

This twitching this is crazy though. I haven’t really heard of anybody having it as long as I have. I just want it to go away, and for it to go away now. I’d be fine if it wasn’t for this one major thing.


I assure that I had it as long as you, and I also assure you that I'm worlds better now.

Did you read the post on the TD thread where I asked if you'd tried heat?  As I wrote to you more, I am remembering other things I did during recovery.  One of those things (in addition to a heating pad) was buying a shower chair and just sitting under the warm running water.  That really helped my muscles.  At one point, I did buy magnesium cream, but I never ended up using it, and I'm glad I didn't.  Maybe magnesium would have helped, but the "less is more" approach ended up working in my case. 

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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WiggleIt

I noticed that Alto somewhere suggested you try cognitive behavorial therapy.  I didn't exactly end up doing CBT, but I did find a psych doc to talk to who took a non-pharma approach with me and who educated himself about psych med damage.  He helped me talk through the trauma of what happened to me.  I was pretty burned out on doctors and had no idea if I would end up having to walk away from this psych doc if he tried to push meds at me, but he never did.  He talked to me, he talked to my folks, and he revisited research about the harms of psych meds.  I suspect that having me as a patient was a bit of a learning curve for him and also a memory-jogger of things he'd learned in med school.  I was happy and lucky that he was willing to have me as a patient solely in a talk therapy capacity.

If there's a way that you could find a doc or talk therapist who knows about adverse psych med reactions, it may help to talk in person.  It certainly helped me, but I did have to call about 20 psych docs before I found one who wasn't a drug-pushing, denial-imbued, hubristic quack.  (Oops, did I say that out loud?!)


**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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Wellbutrinsucks

@WiggleIt I haven’t seen that post but I’ll go check it out. I have a new doctor who specializes in Functional and Integrative Medicine and she hasn’t denied anything but I guess she want to see what I’m allergic to or if I’m missing any genes, as she acknowledged that genetically something might be off since someone else could take that combo and be fine. I know you have to be cautious with all these health professionals but so far she’s been okay. 

 

I’ve been thinking about seeing an integrative psychiatrist to see if that would help. It’s funny because I recounted what happened to a psych nurse practitioner and she said I should sue as she’d never prescribe my meds together. She seems to be much more cautious about giving those meds out than others are. And lol at the last part. Unfortunately most doctors can’t admit when they’re wrong and don’t know something and just push pills and unsubstantiated diagnoses. 


March 2016: Strattera

June 2016: Nothing

October 2016-April 2017:Wellbutrin SR

Mid-March 2017-March 2017 Adderall (9 days)

April 2017: Wellbutrin and Ritalin (7 days)

Mid-April to mid-June: nothing 

early June 2017: Wellbutrin XL

mid-June 2017: Wellbutrin XL, Adderall, and Hydrochlorothiazide (blood pressure); took for two days

Late August: Allegra for two days, then Propranolol

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WiggleIt
5 hours ago, Wellbutrinsucks said:

@WiggleIt I haven’t seen that post but I’ll go check it out. I have a new doctor who specializes in Functional and Integrative Medicine and she hasn’t denied anything but I guess she want to see what I’m allergic to or if I’m missing any genes, as she acknowledged that genetically something might be off since someone else could take that combo and be fine. I know you have to be cautious with all these health professionals but so far she’s been okay. 

 

I’ve been thinking about seeing an integrative psychiatrist to see if that would help. It’s funny because I recounted what happened to a psych nurse practitioner and she said I should sue as she’d never prescribe my meds together. She seems to be much more cautious about giving those meds out than others are. And lol at the last part. Unfortunately most doctors can’t admit when they’re wrong and don’t know something and just push pills and unsubstantiated diagnoses. 


I'm sure your functional doc means well, but anything she comes back with regarding genes might add more confusion to the mix.  Everyone has genetic mutations, including healthy people, and those genetic mutations (in my opinion) are very rarely enough to explain what the meds have done to us.  I do have one recovered friend who is eyeballs-deep in genetic info, and she swears by it—so, who knows, maybe she's right and I'm wrong!  I don't deny that possibility.

However, I tend to be wary of the current genetic testing available to the public for a few reasons:

1.) The affordable genetic testing companies, such as 23andMe, are selling that information to pharmaceutical companies.  I value my medical privacy too much to feel comfortable with that.

2.) Genetic testing that's done through labs with doctors (and not through places like 23andMe) is prohibitively expensive.

3.) The few genetic tests that I did pony up for through my doctor all came back within the range of normalcy and confirmed there was nothing wrong with me.  The meds damaged me, plain and simple, and I also know others who've had normal genetic results who ended up with psych med damage anyway.

4.) There are plenty of genetic mutations that are nonetheless within the spectrum of normalcy, so there's no need getting worked up over common genetic mutations that really don't affect anything.

So those are my reasons not to get hung up on the gene component, but—as I said above—my recovered friend is super into the gene piece of the puzzle and she considers herself fully recovered, so I have to remain open-minded that she's right and I'm wrong.

Ultimately, the decision is up to you, but it can't hurt to know the pros and cons so you can make the best decision possible.  I definitely believe in functional medicine and have watched western medicine trends follow in some functional medical trend over the years, for sure.  But I still like to be cautious with my pocketbook and privacy.  If I were rich, I'd have paid for a bunch of genetic tests already, but I cannot bring myself to go the cheaper route of the gene companies who sell their results.

I did see an integrative psychia for a few appointments, and I learned a lot about how the meds affect the body.  That was very useful.  

Do be advised that most of these docs will try to push supplements at you.  They're not doing it just to try to make money off you or anything; it's just that even the best holistic and integrative psychiatrists can really underestimate how sensitive a body is during WD, so they think they're going to help.

What I do think would be a good idea is to get tested for vitamin and mineral deficiencies.  That won't break the bank, and it will give you an idea if any supplements are actually necessary in your case.  I think it's important not to add unnecessary logs on the fire in WD, so my advice tends to be not to take something unless you've got a verifiable deficiency.

I should also add that I have a friend who is a genetic researcher (like she actually works in labs studying genes) and she also advises against the mass-marketed gene tests due to privacy reasons.  


  

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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Wellbutrinsucks

I’m hoping that all this leads to someone actually treating me given my symptoms. I’ve read several times of people who’ve taken Wellbutrin and gotten muscle twitches have seen seen them resolved with a certain med and at this point I think I’d like to try it.


March 2016: Strattera

June 2016: Nothing

October 2016-April 2017:Wellbutrin SR

Mid-March 2017-March 2017 Adderall (9 days)

April 2017: Wellbutrin and Ritalin (7 days)

Mid-April to mid-June: nothing 

early June 2017: Wellbutrin XL

mid-June 2017: Wellbutrin XL, Adderall, and Hydrochlorothiazide (blood pressure); took for two days

Late August: Allegra for two days, then Propranolol

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WiggleIt

Any med that can control twitches can also worsen them.  When you get right down to it, all those meds are targeting the brain.  I've belonged to several movement support groups over the years and have seen movements both helped and worsened by meds.  There's no way to predict which camp you'll fall into, but the decision needs to be yours and you need to do your research thoroughly.  

I think you should also join support groups on Facebook that are specific for people with movements.  You'll find people in those groups whose movement were triggered by meds, by you'll also find people whose movements are genetic, or were caused by an accident or a brain injury.  You'll find people whose movements have been helped by meds, and people whose movements were worsened by meds.

Off the top of my head, some support groups you can look for on FB are as follows:

-Neuronauts
-Dystonia is Disorder Not Disease
-Generalized Dystonia Support Forum
-The Silence of Dystonia Forum
-FND Hope US/Canada

I know that you don't necessary have what I was diagnosed with, which is Dystonia, but you may get some leads if you join those groups and ask questions.  You may get leads about additional groups to join that do align with your specific movements.  So I'd say to take a chance and join and ask questions there, too.

Myoclonus (myoclonic jerks) is another possible thing you could look up to see if you feel your twitches match that description.  Either way, I think you should talk to additional people and additional movement-based support groups as you decide whether or not you want to try another pill.

I had jerks, wiggles, dystonia, limb posturing, facial twitches, etc. for WELL over a year.  It's not my place to tell you how to approach treating your twitches.  I'm happy to tell you all the knowledge I've learned over the years, and you can use it to do more research to help your decision.

Botox is sometimes used to treat movements, literally to freeze the muscles.  Botox injections are given, then re-administered when they wear off.  A needle will be inserted into your muscles prior to the injection; this needle measures the muscle tension, and helps doctors determine where to inject, and how much.  Botox can work great, but finding the right dosage can take time, which means your muscle might get too unresponsive from a Botox injection and be unable to move until it wears off.    

You might also be offered Artane, which can control movements. The chief complaint I've heard about Artane is short-term memory loss.

You might also be offered Benadryl, which I've been told is best in small doses, 5-10 mgs, as a rescue med if there is a bad movement episode.  High dosages or regular, longterm usage can exacerbate movements down the line.

Some docs will offer benzos to people who have movements.  Obviously, I think that's a terrible idea.

In my own journey, I had dystonic movements, dyskinesia movements, and myoclonic jerks.  They were in every part of my body for years, and I had to wait years before they got better.  Nobody looking at me now would have any CLUE my body ever had movements.  If I'm not careful, my movements flare up, but I know mostly how to avoid that, so I appear very normal to anybody looking at me.

Let me know if any of this was helpful and if you have more questions.  I stayed off meds, and that was the right decision for me.  I also had daily help from my family to survive.  

(BTW, when I use the word "movement," I'm not saying you have a movement disorder.  It was just the most general, easy description I could think of to encompass your twitches and all my rainbow of movements.)

   

Edited by WiggleIt
Added a comma!

**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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Farout

Hi, just poking my head in to say that adverse reactions are a nightmare. It sounds like you were on quite a cocktail when you had yours.  You will heal.  It does take time.

 

I couldn’t cope with magnesium supplements for a long time either - far too activating for me.  Epsom salts baths worked quite well though. 

 

I had shocking back pain, sciatica & tendinitis in my post AR recovery.  I agree that some stretches and light exercise might help, along with physiotherapy, if you can access it.


March 2003 took two sartroline tablets after a traumatic incident and had a reaction so stopped.  I am not sure now whether what I had for the next 18 months was WD after the reaction or the emotional fallout from the traumatic event.  Some of it was very similar to WD in hindsight.  

 

February 2014 - Took five pristiq (50mg) tablets and three Ativan and had a severe reaction.
Extreme withdrawal symptoms for three weeks compounded by visit to naturopath -

One week later took 900mg St John's Wort x 3 daily for six weeks - more negative effects and suspected serotonin syndrome - before tapering over three weeks. Last tablet late May 2014.

Waves and windows cycle of recovery with longer windows and manageable waves.

May 2015 - already in a mild wave, following a usual pattern, I took clarithromicin and amoxicillin for two weeks for a sinus infection which I also seem to have had quite a reaction to.

 

February 2016 - Feeling much better.  I still have waves and windows but they are manageable.  I'm largely enjoying life again.

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Wellbutrinsucks

@WiggleIt improves implies that they’re still there and are potentially still a problem, which obviously scares me because I don’t just want improvement, I want them gone.

 

I don’t want to have to worry about this problem as the career I’m going in requires me to sit and study and use my hands for different things, all of which is next to impossible if I continue to have the problems I do now. 

 

@Farout I’m skeptical on stretching because I’ve tried it before and it didn’t work. I don’t think my twitching has anything to do with tension or anything like that, so that’s why I’m not enthusiastic about trying them again. 

 

The type of muscle twitching I get is the kind normal people get every once in a while, but just exacerbated on a daily basis. I feel I need to say that since people tend to define twitching differently.

 

 


March 2016: Strattera

June 2016: Nothing

October 2016-April 2017:Wellbutrin SR

Mid-March 2017-March 2017 Adderall (9 days)

April 2017: Wellbutrin and Ritalin (7 days)

Mid-April to mid-June: nothing 

early June 2017: Wellbutrin XL

mid-June 2017: Wellbutrin XL, Adderall, and Hydrochlorothiazide (blood pressure); took for two days

Late August: Allegra for two days, then Propranolol

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Wellbutrinsucks

And I forgot to mention that I’ve had a lot of blood work done and they’ve tested me for the most common vitamin and mineral deficiencies. I’ve been taking a multivitamin since this all happened so I don’t think any of my issues have to do with any deficiencies. They also keep testing my thyroid and those tests come back normal too.

 

In regards to genetic testing, my background is in the life sciences and I firmly believe that genetic differences are the reasons why different people react differently to medications. It’s why the pharmacogenomics field has grown and I think there’s a lot of potential there. I trust that my doctor will be able to tell me if a significant genetic difference exists and what that means for me generally. 

 

I do think a lot of my issues are genetic given many differences me and my sibling have in regards to autoimmune disorders and other stuff, so I’m not as skeptical as some may be. Like I’ve said before, I just want these issues resolved so I can move on. This twitching has become a complete nightmare and no amount of CBT or “acceptance” will change that.


March 2016: Strattera

June 2016: Nothing

October 2016-April 2017:Wellbutrin SR

Mid-March 2017-March 2017 Adderall (9 days)

April 2017: Wellbutrin and Ritalin (7 days)

Mid-April to mid-June: nothing 

early June 2017: Wellbutrin XL

mid-June 2017: Wellbutrin XL, Adderall, and Hydrochlorothiazide (blood pressure); took for two days

Late August: Allegra for two days, then Propranolol

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WiggleIt
22 hours ago, WiggleIt said:

Nobody looking at me now would have any CLUE my body ever had movements.  
   


Don't forget that my comments also included THAT ^^ piece of information.


**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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WiggleIt

People on SA have certainly had twitching as long as you—and longer—and then it's resolved.  I know this is scary, I know it probably more than anyone here.  I do still have hope for you, though.  

Please keep me posted, and I'll follow here to see how you are doing and what you decide.  Please do consider the resources I suggested <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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WiggleIt

Stretching was a bad idea for me for years.  It would ALWAYS set off my twitching.

But now, four years later, I can stretch and it actually helps and doesn't flare anything.


**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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Wellbutrinsucks

I’ll definitely keep you updated @WiggleIt


March 2016: Strattera

June 2016: Nothing

October 2016-April 2017:Wellbutrin SR

Mid-March 2017-March 2017 Adderall (9 days)

April 2017: Wellbutrin and Ritalin (7 days)

Mid-April to mid-June: nothing 

early June 2017: Wellbutrin XL

mid-June 2017: Wellbutrin XL, Adderall, and Hydrochlorothiazide (blood pressure); took for two days

Late August: Allegra for two days, then Propranolol

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WiggleIt

Sounds good :)  I'll be right here rooting for you.


**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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riverwithdrawal
On 8/25/2018 at 2:42 AM, Songbird said:

Hi Wellbutrinsucks, welcome to SA.  I'm sorry to hear that you have had such a bad time with adverse reactions to meds.  Unfortunately, as you've discovered, many doctors are clueless about it.

 

Please create a signature containing a summary of your med history, including all drugs, doses and dates (starting and stopping).  Your signature appears below every post you make, and helps us see your situation easily without having to read from the top every time.   You could look at my signature for an example.  Instructions for creating your signature are here: Please put your withdrawal history in your signature.  You can edit your signature here: edit your signature in Account Settings.

 

To answer your question, I don't think there is much that can be done to treat symptoms from adverse reactions.  When people take other meds to try to treat symptoms, it usually doesn't work and often makes things worse.  The best treatments seem to be time, patience, a healthy lifestyle, and non-med coping skills. 

 

As your system seems to be extremely sensitive to meds, you may need to avoid all meds (even OTC) as much as possible.  Do you know what was in the allergy meds you reacted to?  It's also a good idea to be very gentle with your system.  Avoid caffeine and alcohol, and try to reduce stress in your life as much as you can.

 

Please post all your updates and questions about your situation here in your introduction topic, and we will try to help you as best we can.

 

 

Songbird...that was a beautiful and compassionate way of saying 'hello'.  I really feel for Wellbutrinsucks!  I'm beginning my taper off of Wellbutrin which I have taken for 20 years.  Wellbutrin, welcome to the site and if I can help you in any way, I most certainly will. 


River's 20-year Drug History (1999 - 2018 Wellbutrin):

Dec 2018 -  300 mg SR Wellbutrin tablet once per day.  Started tapering process by replacing the 300 mg SR dosage with 150 mg SR, taken twice a day, having a 12-hour window between dosages.  Initial holding period was 30 days.

Jan 2019 - Replaced the sustain release form of Wellbutrin with immediate release. 150 mg IR Wellbutrin twice a day with a 12-hour window between dosages. Holding period was ten days. Start decreasing dosage: 150 mg IR (mornings) + 138 mg IR(evenings) with a  12-hour window, hold for ten days. 

Feb 2019 - Start decreasing dosage: 125 mg IR (mornings) + 125 mg IR(evenings) with a 12-hour window, hold until symptoms abate.  

 

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riverwithdrawal

 

When I was on 300mg Wellbutrin SR (daily), after seven years, during a period in my life where I was under tremendous stress, didn't eat properly and was dehydrated most of the time, I developed tremors and restless leg syndrome and leg cramps. I was so dehydrated at times that when I had to go to the ER for a diverticulitis attack, it took the ER nurse two hours to get an IV into my veins. Since December 2018, I have been tapering my medication. As of today, I'm on 113mg Wellbutrin (Immediate Release) taken in the morning and evening, which is 226mg. During this time, I have added the following in my dietary routine:

 

  1. I drink 16 oz of water before eating. I try to drink a total of 70 oz of water per day, not including any other drinks I may consume.  I am 140 lbs.  I drink 0.5 oz for each pound I weigh.  Dehydration is only one potential cause of muscle cramps, but it’s one worth considering if you are experiencing cramps. Changes in the electrolytes, such as sodium and potassium, can lead to muscle cramping as well.
  2. An hour after drinking my water, I take my medication with my breakfast. For breakfast, I have usually had a large bowl of fruit. And take my supplements: my probiotics (high dosage), Salmon oil, Fish Oil ( a combo of several types of fish oils), flax seed oil - all in pill form. And, I take a multi-purpose digestive aid tablet.
  3. 30-minutes afterward, I heat up a cup of almond milk (unsweetened) and place a peppermint tea bag in it. After the tea bag has seeped, I flavor the tea with maple syrup, add acacia powder (pre-biotics), cocoa powder, flaxseed oil, coconut oil, and cocoa butter. Actually, It tastes pretty good. I notice that with this amount of oil in my diet, I don't need a stool softener. I also notice that my leg cramps, restless leg jumping, and tremors have disappeared and I don't have bad mood swings as I did before. Before bedtime, I drink another cup of this cocktail but I omit the cocoa powder.
  4.  Lunch and Dinner I take a multivitamin, multi-mineral, Vitamin C, extra Potassium and Vitamin D.  I am on an Auto Immune Diet. 
  5. One hour after I take my evening medication, I take a BCAA, with l carnitine, l asparagine, magnesium, potassium, Vitamin C and turmeric. I notice I get a restful sleep with this combination. I believe the magnesium works better with protein. I don't know why, but, for me it does.

 

These also might be helpful to others - these steps help me:

  1. Yoga and meditation have helped me overcome the feeling of "being lost" and unsure about myself. 
  2. I read the scriptures daily and try to have a 'relationship' with God.

 

When I follow this routine, in addition to the above benefits,  I stop craving sweets and chocolate, I don't get hungry much and I feel calm and have a sense of well being.  

 

The neuroprotective effects of cocoa flavanol and its influence on cognitive performance

Spotlight on Asparagine and Its Benefits

Branched-Chain Amino Acids as New Biomarkers of Major Depression - A Novel Neurobiology of Mood Disorder

Probiotics and the Vagus Nerve – a New Frontier for Psychiatric Conditions

The Gut-Brain Axis: The Missing Link in Depression

The Underlying Factor Behind Your Anxiety And Depression

 


River's 20-year Drug History (1999 - 2018 Wellbutrin):

Dec 2018 -  300 mg SR Wellbutrin tablet once per day.  Started tapering process by replacing the 300 mg SR dosage with 150 mg SR, taken twice a day, having a 12-hour window between dosages.  Initial holding period was 30 days.

Jan 2019 - Replaced the sustain release form of Wellbutrin with immediate release. 150 mg IR Wellbutrin twice a day with a 12-hour window between dosages. Holding period was ten days. Start decreasing dosage: 150 mg IR (mornings) + 138 mg IR(evenings) with a  12-hour window, hold for ten days. 

Feb 2019 - Start decreasing dosage: 125 mg IR (mornings) + 125 mg IR(evenings) with a 12-hour window, hold until symptoms abate.  

 

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Wellbutrinsucks

Thanks @WiggleIt, I appreciate it and @riverwithdrawal that’s great that your diet has helped those issues disappear. Maybe I’ll try Vitamin D3; I was deficient in it last year. Also, has anyone heard of the Psychopharmacology Institute? I believe they’re based in Britain and they send emails about different psych meds and their potential issues in different conditions. They seem to be astute and realize the different issues that can arise on psych meds. I hope this can be useful to someone.

 

https://psychopharmacologyinstitute.com/


March 2016: Strattera

June 2016: Nothing

October 2016-April 2017:Wellbutrin SR

Mid-March 2017-March 2017 Adderall (9 days)

April 2017: Wellbutrin and Ritalin (7 days)

Mid-April to mid-June: nothing 

early June 2017: Wellbutrin XL

mid-June 2017: Wellbutrin XL, Adderall, and Hydrochlorothiazide (blood pressure); took for two days

Late August: Allegra for two days, then Propranolol

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Wellbutrinsucks

Do these issues actually resolve in anyone? Of all the symptoms I’ve had, the twitching and jerks have continued to get worse. First it was just in my legs/thighs, then it went to my arms, now it’s in my face. Since that stupid B12 shot, I have whole limbs that jerk while I fall asleep, and all of this has occurred or worsened since December. So my questions still stands: do people actually resolve these issues, and by resolve I mean no longer have them? I’m not just looking for improvement, I want them gone and looking through others’ threads suggest to me that the vast majority of people with these issues only see “improvement” and not a complete resolution. 


March 2016: Strattera

June 2016: Nothing

October 2016-April 2017:Wellbutrin SR

Mid-March 2017-March 2017 Adderall (9 days)

April 2017: Wellbutrin and Ritalin (7 days)

Mid-April to mid-June: nothing 

early June 2017: Wellbutrin XL

mid-June 2017: Wellbutrin XL, Adderall, and Hydrochlorothiazide (blood pressure); took for two days

Late August: Allegra for two days, then Propranolol

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Gridley

Check out the success stories of Pug, Hudgens and Happy2Heal.  I don't know if all their issues have resolved but many certainly have.  Same with Altostrata.


Gridley Introduction

 

Lexapro 20 mg since 2004.  Begin Brassmonkey Slide Taper Jan. 2017.   

End 2017 year 1 of taper at 9.25mg 

End 2018 year 2 of taper at 4.1mg

End 2019 year 3 of taper at 1.0mg  

Oct. 30, 2020  Jump to zero from 0.025mg.  Current dose: 0.000mg

3 year, 10 month taper is 100% complete.

 

Lorazepam 1 mg 1986-1991 CT, resumed a few months later. CT 2000.  1 mg 2011-2016.  Sept, 2016 increased to 0.5 X 3 in split dose. Sept. 2019 increased to 0.625 X 3 after crossover to new brand

 

Imipramine 75 mg daily since 1986.  Jan. 2016 began every 3-weeks 10% taper, down to 15mg.  Aug 2016, discovered SA, updosed to 25mg and holding.  Taper is 66% complete.  

  

Supplements: omega, vitamins E and D3, magnesium glycinate, probiotic, melatonin .3mg


I am not a medical professional and this is not medical advice, but simply information based on my own experience, as well as other members who have survived these drugs.

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Wellbutrinsucks

With the issues I’m talking about specifically? Many people have seen different symptoms resolve, but have they seen twitching or jerking actually resolve? 


March 2016: Strattera

June 2016: Nothing

October 2016-April 2017:Wellbutrin SR

Mid-March 2017-March 2017 Adderall (9 days)

April 2017: Wellbutrin and Ritalin (7 days)

Mid-April to mid-June: nothing 

early June 2017: Wellbutrin XL

mid-June 2017: Wellbutrin XL, Adderall, and Hydrochlorothiazide (blood pressure); took for two days

Late August: Allegra for two days, then Propranolol

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Gridley
5 minutes ago, Wellbutrinsucks said:

 

With the issues I’m talking about specifically? Many people have seen different symptoms resolve, but have they seen twitching or jerking actually resolve? 

 

 

I've brought your question to the attention of the other moderators.


Gridley Introduction

 

Lexapro 20 mg since 2004.  Begin Brassmonkey Slide Taper Jan. 2017.   

End 2017 year 1 of taper at 9.25mg 

End 2018 year 2 of taper at 4.1mg

End 2019 year 3 of taper at 1.0mg  

Oct. 30, 2020  Jump to zero from 0.025mg.  Current dose: 0.000mg

3 year, 10 month taper is 100% complete.

 

Lorazepam 1 mg 1986-1991 CT, resumed a few months later. CT 2000.  1 mg 2011-2016.  Sept, 2016 increased to 0.5 X 3 in split dose. Sept. 2019 increased to 0.625 X 3 after crossover to new brand

 

Imipramine 75 mg daily since 1986.  Jan. 2016 began every 3-weeks 10% taper, down to 15mg.  Aug 2016, discovered SA, updosed to 25mg and holding.  Taper is 66% complete.  

  

Supplements: omega, vitamins E and D3, magnesium glycinate, probiotic, melatonin .3mg


I am not a medical professional and this is not medical advice, but simply information based on my own experience, as well as other members who have survived these drugs.

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Altostrata

Wellbutrinsucks, think carefully: Have you developed a habit of mind that leads to health anxiety? See Health anxiety, hypochondria, and obsession with symptoms

 

On 2/15/2019 at 10:27 AM, Altostrata said:

 

Please stop this, this thinking is based on nothing. There have been people with much more severe symptom patterns over much longer periods of time with no intermissions at all.

 

Perhaps Cognitive Behavior Therapy might help your persistent negative rumination?

 

The variability in your symptoms indicates your nervous system has periods of relative stability. This is a good sign.

 

If you haven't instituted a regimen of daily stretching and at least a half-hour of other gentle exercise in favor of worrying, you're working against yourself. Do you sit at the computer a lot? This could be contributing greatly to your symptoms. Please get stretching right away.

 

How many cases of recovery would convince you that you, personally, are not doomed? If you saw some cases, would you be saying, "But that person wasn't taking Wellbutrin" or "But that person isn't exactly like me."

 

You cannot even try gentle stretching regularly over some weeks? If you're sedentary, that could help quite a bit. How about physical therapy, would you do that? Strongly recommend your seeking an osteopath (D.O., equivalent to an M.D.) who specializes in neuromusculoskeletal medicine, rehabilitation medicine, etc. for evaluation and referral to physical therapy. If you can find an osteopath for osteopathic manual therapy, I would do that.

 

The way doctors would treat you is.....with more psychiatric drugs. If you don't want that, you'll have to be more committed to self-care and non-drug treatments.


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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Wellbutrinsucks

Health anxiety is something I definitely worried about in the beginning as I didn’t know I was in withdrawal and got tested for MS. I then started to believe that if I didn’t have MS that I had another worse neurological condition. That has calmed down somewhat, but I still end up accidentally reading or seeing something on tv that makes me think about the same few conditions that I thought I could have. It’s akin to intrusive thoughts to a degree. 

 

At first I would look at people’s stories and try to apply them to me as I think everyone has at some point. However, I look at my particular situation and see how long certain symptoms have lasted and it’s unnerving, especially since my most concerning symptom has lasted the longest and is the most unpredictable and I never thought, again like so many here, that my worst symptom would last so long and be this severe. I just want to move on so I can go back to school and do the same things my classmates are doing. It’s really hard to be okay or calm or whatever when you’re stuck in this stupid withdrawal nonsense and there’s nothing you can really do about it. It really, really sucks.

 

I can stretch, in fact I was prescribed stretching last year when I went to check out why I was still having twitching with a musculoskeletal doctor. It’s really hard to sit still while your legs are twitching and you’re supposed to be in grad school and studying. But I didn’t find that it worked, so I’m very skeptical to try things that haven’t worked. 

 

I’m actually very familiar with osteopathic medicine (have a friend in school for it and I myself am interested in the healthcare field) and am trying to find a DO who actually practices OMM therapy since there aren’t many in my state that do. Hopefully I get an appointment soon so I can take it from there.

 

I’m just so frustrated as I can’t even sleep in my bed anymore since I twitch so much when I do. I have to sleep on a couch at awkward angles and have to spend most of day on my feet with my bad ankle since I can’t stand the buzzing and twitching throughout the day. I just want this hell to be over with so I can move on with my life. I just feel like I’m too young to feel this distraught and hopeless since I just want to go back to school.


March 2016: Strattera

June 2016: Nothing

October 2016-April 2017:Wellbutrin SR

Mid-March 2017-March 2017 Adderall (9 days)

April 2017: Wellbutrin and Ritalin (7 days)

Mid-April to mid-June: nothing 

early June 2017: Wellbutrin XL

mid-June 2017: Wellbutrin XL, Adderall, and Hydrochlorothiazide (blood pressure); took for two days

Late August: Allegra for two days, then Propranolol

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WiggleIt

I no longer have any twitching at all in my face.  I was desperate when my face twitched, and I went through a phase where my face unexpectedly worsened for a long time.  It was so bad that it actually scared a couple of doctors.  I don't like to think about it or talk about it or remember it.  But it happened, and it did completely resolve.

I do know two other people with body jerking/twitching through a non-SA support group, and those two people completely resolved.  As far as I know they've never belonged to SA at all, otherwise I'd point you to their threads.

Have I told you about neurological physical therapy?  That's what helped me so much.  You absolutely should look into it, and I also think you need to stop messing around with supplements.  Neurological physical therapy is used for people with tremors, and I think it would be better suited to your scenario than a DO would (sorry, @Altostrata, not trying to shade your suggestion).  A DO using OMM techniques might set off more jerking by manipulating the muscles, whereas a neuro PT will get you to engage in gentle, neuro-based movements to get your brain and muscles communicating effectively with each other again:   

http://www.neuropt.org/consumer-info/what-is-a-neurologic-physical-therapist

I'm not discounting a DO; just feel that a neuro PT would be first to try before a DO.


    

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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WiggleIt
On 2/17/2019 at 11:07 PM, WiggleIt said:

Stretching was a bad idea for me for years.  It would ALWAYS set off my twitching.

But now, four years later, I can stretch and it actually helps and doesn't flare anything.


And don't forget that I wrote this in your thread above ^^ :) 

As you improve, you will be able reincorporate things that you didn't used to be able to do, like stretching.  And a neurological physical therapist can help you pace yourself and gauge if, when, or how much you should be trying things.  When my neuro PT would give me homework (a.k.a. little exercises to practice at home), I always had to do way less than what was assigned, but then slowly worked my way up.

I also had to sleep upright for years, years, years, and am now back to sleeping totally horizontally.

 

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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Wellbutrinsucks

I’ll look into neuro PT @WiggleIt. I’m just so frustrated with this whole process as I miss being in school and I miss being on my own. I hate that this happened and that I had to move back home. I just think of all that I’ve lost and I don’t feel like I have anything to look forward to. I resent all this because I worked too freaking hard to have an unpredictable condition that the healthcare field is completely ignorant to. Their incompetence amazes me.


March 2016: Strattera

June 2016: Nothing

October 2016-April 2017:Wellbutrin SR

Mid-March 2017-March 2017 Adderall (9 days)

April 2017: Wellbutrin and Ritalin (7 days)

Mid-April to mid-June: nothing 

early June 2017: Wellbutrin XL

mid-June 2017: Wellbutrin XL, Adderall, and Hydrochlorothiazide (blood pressure); took for two days

Late August: Allegra for two days, then Propranolol

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Altostrata

Sedentariness causes a lot of musculoskeletal problems among our members, particularly with the neural hypersensitization involved in withdrawal syndrome. Stretching can go a long way towards changing muscle behavior. Like everything else, it might take time to show improvement.

 

Evening is typically when these muscle spasms are more pronounced. I had "restless legs" for months in early withdrawal symptom. Even now, 15 years later, I know when I have been sitting too much, I can get painful leg cramps and spasms in my feet at night. Stretching legs is essential to keeping the muscles in good working order.

 

Acupuncture may help, too. One way or the other, unless you want to be a drug guinea pig, you will have to accept your situation, manage it as best you can, and not let it rule your life.


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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WiggleIt
5 hours ago, Wellbutrinsucks said:

I’ll look into neuro PT @WiggleIt. I’m just so frustrated with this whole process as I miss being in school and I miss being on my own. I hate that this happened and that I had to move back home. I just think of all that I’ve lost and I don’t feel like I have anything to look forward to. I resent all this because I worked too freaking hard to have an unpredictable condition that the healthcare field is completely ignorant to. Their incompetence amazes me.


I feel you, I really do.  But I do think home is the best place to recover, and must say that neuro PT was a total game-changer for 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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Wellbutrinsucks

I’m just so frustrated because being at home means things are pushed back yet another year and now the jerks are returning again. I don’t see how time is going to fix these issues and I really don’t want to be in the same position this time next year.


March 2016: Strattera

June 2016: Nothing

October 2016-April 2017:Wellbutrin SR

Mid-March 2017-March 2017 Adderall (9 days)

April 2017: Wellbutrin and Ritalin (7 days)

Mid-April to mid-June: nothing 

early June 2017: Wellbutrin XL

mid-June 2017: Wellbutrin XL, Adderall, and Hydrochlorothiazide (blood pressure); took for two days

Late August: Allegra for two days, then Propranolol

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Altostrata

If you don't stay at home, would you be going to school or working? What about your condition is keeping you from doing that?

 

How is the physical therapy coming?


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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Wellbutrinsucks

Right now, if I weren’t at home I’d be working and then applying to go back to school. The sleep inconsistencies and the twitching keep me from going to sleep at a regular hour. I usually can’t fall asleep until 6 or so in the morning because of these problems. Now the jerking I had over a year ago is back more frequently so now I have the hypnic jerks, limbs jerking, teeth clenching, and of course the muscle twitching. How do people usually feel months before they’re consider themselves “out of withdrawal” because this is horrible.

 

I haven’t started physical therapy yet but I do have another doctor’s appointment next week. The DO center/school is bit far from me but I do plan to make an appointment in a few weeks.


March 2016: Strattera

June 2016: Nothing

October 2016-April 2017:Wellbutrin SR

Mid-March 2017-March 2017 Adderall (9 days)

April 2017: Wellbutrin and Ritalin (7 days)

Mid-April to mid-June: nothing 

early June 2017: Wellbutrin XL

mid-June 2017: Wellbutrin XL, Adderall, and Hydrochlorothiazide (blood pressure); took for two days

Late August: Allegra for two days, then Propranolol

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Altostrata

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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WiggleIt
9 hours ago, Wellbutrinsucks said:

Now the jerking I had over a year ago is back more frequently so now I have the hypnic jerks, limbs jerking, teeth clenching, and of course the muscle twitching.


Sorry if I'm being repetitive with these questions, but when you say the jerking has returned:

1.) Is it visible and involuntary while you are awake?

2.) Does it happen visibly while you are awake and trying to sit still?

3.) Does it happen visible while you are awake and trying to walk or use your hands, etc.?

4.) Is the muscle twitching an internal sensation only, or is it visible?

5.) Have you looked at videos of people with myoclonic jerks, and do your jerks/twitches look like theirs? (Be forewarned that viewing these videos could be scary and upsetting.)

6.) Are you eventually able to fall asleep, even despite the hypnic jerks?

The only point of reference I have is my own body, so I'm really striving to understand as much as I can about your body, so please do bear with my questions.

This video gave me SO MUCH hope when my movements were at their worst, and it inspired me to dig and dig until I found a neuro physical therapist to work with.  I really hope your upcoming appointment goes well!  
 


 


**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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Wellbutrinsucks
10 hours ago, WiggleIt said:


Sorry if I'm being repetitive with these questions, but when you say the jerking has returned:

1.) Is it visible and involuntary while you are awake?

 

The jerking doesn’t happen when I’m awake, only when I’m falling asleep.

2.) Does it happen visibly while you are awake and trying to sit still?

 

Jerking doesn’t happen while I’m awake or sitting still, but muscle twitching still occurs while I’m awake and sitting still. And when I say twitching, I mean the normal muscle twitching we all get a couple times a year but mine is everyday and much more frequent.

3.) Does it happen visible while you are awake and trying to walk or use your hands, etc.?

 

Nope, I’m normal while in motion for the most part. 

4.) Is the muscle twitching an internal sensation only, or is it visible?

 

The twitching is both internal and external. They are mostly internal so people can’t see them, but the worse ones are the ones people can see.

5.) Have you looked at videos of people with myoclonic jerks, and do your jerks/twitches look like theirs? (Be forewarned that viewing these videos could be scary and upsetting.)

 

Yeah I already have a ton of anxiety from this whole withdrawal thing that if I look at something it’ll freak me out way more than I need to be. One of my doctors did show me a video. I know what myoclonic jerks are and I had them for several weeks when withdrawal first happened in 2017, and now they are coming back more regularly. The jerks are like having one arm or leg move as you’re falling asleep. I’ve also had the “head and foot drop” thing come back that I had for about a month or so in late 2017 and mostly disappeared in 2018. 

6.) Are you eventually able to fall asleep, even despite the hypnic jerks?

 

Yeah I can eventually get back to sleep for now, but the jerks have become more frequent so now it is harder to get and stay asleep. When this first happened in December 2017, I would twitch and jerk that I literally couldn’t sleep and had to go to the ER because I felt like I was gonna die. Luckily they gave me a short course of Ativan, and later I was put on Zoloft for about 6 weeks, which allowed me to sleep so I could finish the rest of my semester.

The only point of reference I have is my own body, so I'm really striving to understand as much as I can about your body, so please do bear withquestions.

This video gave me SO MUCH hope when my movements were at their worst, and it inspired me to dig and dig until I found a neuro physical therapist to work with.  I really hope your upcoming appointment goes well!  

 

 

(Note:  responses to questions are in blue in the above quote)

 

I also haven’t really done any exercise (something I know I need to change) and my knees are getting bad (I had to stand at a temporary job in retail). I guess I could talk to the DO or a PT about different exercises to do.

 

 

Edited by ChessieCat
coloured responses

March 2016: Strattera

June 2016: Nothing

October 2016-April 2017:Wellbutrin SR

Mid-March 2017-March 2017 Adderall (9 days)

April 2017: Wellbutrin and Ritalin (7 days)

Mid-April to mid-June: nothing 

early June 2017: Wellbutrin XL

mid-June 2017: Wellbutrin XL, Adderall, and Hydrochlorothiazide (blood pressure); took for two days

Late August: Allegra for two days, then Propranolol

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Wellbutrinsucks

I’m starting to believe that maybe I’m a really slow metabolizer of Wellbutrin and/or Adderall, and maybe that’s what has led me to have all these problems. Wellbutrin is also fat-soluble, and makes me believe that I possibly still have by-products of these drugs in my system, and could be why I’ve been having all these problems. My system is so destabilized and this twitching and jerking changes all the time; I don’t have any windows. I still remember that day in May last year when my thigh twitched once and has thrust me into this nightmare I haven’t been able to get out of. I just really want to be well again. 

 

This link explains the different type of metabolizers and how that can cause serious side effects in different people taking the same antidepressant: https://genesight.com/fast-slow-or-in-between-how-your-genes-affect-medication-success/

 

I know pharmacogenomics is no where near perfect, but I do believe it’s the future and will be used more extensively to pinpoint the medications that are most likely to cause side effects in different people. 


March 2016: Strattera

June 2016: Nothing

October 2016-April 2017:Wellbutrin SR

Mid-March 2017-March 2017 Adderall (9 days)

April 2017: Wellbutrin and Ritalin (7 days)

Mid-April to mid-June: nothing 

early June 2017: Wellbutrin XL

mid-June 2017: Wellbutrin XL, Adderall, and Hydrochlorothiazide (blood pressure); took for two days

Late August: Allegra for two days, then Propranolol

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Link to post
Altostrata

You need to exercise and stop overthinking your symptoms. Being a slow metabolizer would  not result in those symptoms. Not getting enough exercise would, though.

 

We have discussions of slow metabolizer, pharmacogenetics, etc. in our Symptoms and Self-Care forum. We have hashed out just about anything you can think of.

 

Please get started on exercising and stop Googling your symptoms. There are YouTube videos from physical therapists and chiropractors for restless legs exercises. You can start with those.


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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