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

[Faithbarelysurviving]

You are welcome. I also suffer from dystonia I think among many other things...

Please try to find a doctor of alternative medicine/orthomolecular before trying anything.

 

Iniversity of Michigan

http://www.uofmhealth.org/health-library/hn-1278003

 

All the links:

https://www.google.ca/search?q=arsenie+boca&ie=UTF-8&oe=UTF-8&hl=en&client=safari&redir_esc=&ei=iXtMTdXmFoSdlgefx-wW&gws_rd=ssl#hl=en&q=niacin+in+the+treatment+of+tardive+dyskinesia

[WiggleIt]

Neuro appointment tomorrow to see if he can refer me to a dystonia person.

[AliG]

 Good luck, Wiggle. I hope it goes well.

[Wildflower0214]

Prayers, friend.

 

Xo

[WiggleIt]

The general neuro referred me to a specialized dystonia neuro.  Hopefully, the next steps will be for the dystonia neuro to get me to the specialized dystonia PT and to the specialized dystonia osteopath.

Also, I have been sharing my story in my chronic pain community because all those people have been given the same meds and—guess what?  ALL sorts of people are now coming forward with the SAME problems and saying that they thought they were the only one it was happening to.  They all thought they were alone, and it turns out it's happening to ALL of us.

All the mental health patents AND the chronic pain patients are being made to suffer.  Specifically, all the chronic pain patients are coming down with dystonia because we've all been given tricyclics, which is what the doctors like to give for chronic pain.  So, all these people have been battling their dystonia alone!  What's even worse is that the doctors had told them they don't know why they got dystonia, but we've ALL been given tricyclics!  With that evidence, there's no WAY it's a coincidence that we're all coming down with dystonia… We've all been put on TCAs, and now we've all got dystonia… seems pretty clear what the cause of our dystonia is.

[Wildflower0214]

Doctors have got to be some of the biggest idiots on the planet.

 

So prideful!!!!!! How do they get away with this crap?

[luv2knit]

(((Wiggle))) Hopefully you're on the right road to getting help! How sad that you've found so many others along the way

[Cdav]

Wiggle, 

 

Good to know you're getting to get some help! I really hope you start feeling better and seeing improvements. 

[UnfoldingSky]

Hi Wiggle,

 

Just catching up. Sorry I posted and ran a while back, I had to go off-line all of a sudden for a while.  I've been thinking of you though, wondering how you were.

 

I am glad to hear you got the referral and truly hope they will help. Are they getting you in fairly soon or will you have to wait?

 

Also, that is so scary about all of the other people.  Though I wouldn't wish it on anyone at least you know you are far from alone.  I wonder if you guys could maybe get something done about this, now that you realize there's a whole group of you?  Given that the drugs were given for pain then surely you might be taken more seriously than the rest of us are.  Although of course the priority is getting better.

[Cdav]

Wiggle, how are you? Hope you're okay. 

 

I wanted to ask you when you say you have symptoms of dystonia, what are they? I have many muscle spasms and myoclonic jerks all over my body all day long and mostly lying down, but I don't know if they are dystonia or just twitches. From what I've read dystonia is much more sever and it causes whole body contortions. Do you have this? Maybe you've already mentioned it, but my mind right now is really scattered to remember. 

 

Hope you're healing.  

[bluebalu86]

Cdav, I'm the same as you. I have muscle twitching and jerking and myoclonic jerks mostly when lying down and relaxing or trying to sleep, but during the day as well. They prevent me from being able to fall asleep. Not sure what exactly they are. When I cut the Flupentixol I also had a feeling of intense dread every time I got a myoclonic jerk. 

 

WiggleIt, how are you dear? 

[luv2knit]

Wiggle, just stopping by to wish you well. Please check your messages (I have sent you two). I found some encouraging news about the dystonia that you may or may not know about.

 

XOXO

[bluebalu86]

Hey WiggleIt, how are you doing? Just wanted to stop by to check on you, you haven't posted in a while. Hope it means you're having better days.

Hugs

[cymbaltawithdrawal5600]

Hi Wiggle,

 

Just wondering how you are doing, haven't seen you posting much lately and I hope it is because you are finally getting some relief from your symptoms.

 

Let us now if you are ok.

[WiggleIt]

I have not posted for a while because I do not have relief from symptoms.  

The tardive dystonia has worsened and the dyskinesia has returned.  

Straight up, here's the deal: none of the recovery stories out there include whole-body tardive dystonia like mine.  When I have probed moderators for more info about TDD (tardive dystonia AND dyskinesia), they have been kind, but ultimately unable to help because this severity of movement disorder is out of their league, and there are no recovery stories about it.  There are SOME dyskinesia recoveries, but not dystonia.  I've educated myself with medical journals, and the neurological damage that occurs from medication-induced dystonia is FAR less recoverable than dyskinesia.      

The dystonia is so bad that I am unable to sleep because of whole body convulsions and contortions.  I have a dystonic seizure, a.k.a. dystonic storm (wholes body severe contortions), every time I lay horizontally and try to sleep.  Sometimes they happen once a week.  Sometimes they happen every day, which has been the pattern lately.

I can no longer breathe comfortably due to the intense muscle spasms in my diaphragm and stomach; these spasms suddenly fold my body forward and knock the breathe out of me, same is if someone punched me in the stomach.  They happen mostly when i try to lay down to sleep, but sometimes when upright.

For those of you who don't know, dystonia involves a neurophysical inability to relax or unclench muscles because your brain can't send the correct signals anymore.  So when my body tries to relax to sleep, I have convulsions instead and am unable to stop convulsing to fall asleep.  Obviously, I'm now suffering insomnia because of this.  Serious insomnia.  

My diet is healthy and I haven't added anything weird to the mix.  Also, I can't take MMJ for the convulsions.  I'm allergic.

Please don't say to me "Oh, everybody thinks their withdrawal is the worst," because dystonia is NOT the same as protracted withdrawal that gets discussed here.  It is phenomenally more severe.  I have videos of myself that I can't post because they would reveal my face, and I still value my privacy.  

I have joined online support groups for people with dystonia.  Many of those people have medication-induced dystonia.  Guess how many have recovered or gone into remission?  NONE.  Actually, one has, but hers didn't sound constant like mine; hers sounded like it would come and go in episodes.  Mine is CONSTANT, ranging from mild to severe, but never gone completely.

I am so sick of people saying that it's common to think I'm a worst case scenario.  The people who say that are people who NEVER had it this bad.  They reveal the symptoms they had and dystonia is NOT on that list, which means they have NO idea what they're talking about.

Movement disorders ARE the worst case scenario and are not recoverable in the same way that other protracted withdrawal cases are.  That said, please do not suggest that I'm exaggerating or scared.  I've done my homework and have learned the clear differences between the TDD cases of psych meds versus non-TDD cases.  

It gives people false hope to say that when people disappear from here it's because they've gotten better and don't want to look back.  It's sweet that you were all hoping that I've been out enjoying my life again, but here's the big reveal: I haven't been.  My movement disorder got worse for no discernible reason.

The reason people leave this site might be because they end up like me: in support groups for people with permanent TD.  At some point, it gets frustrating to stay in support groups for people in withdrawal whose physical symptoms are basically laughable and whose emotional symptoms always eventually do improve.  Of course, I'm happy for those people, but their stories don't help at all, neither their advice, despite how truly kind and caring they are.             

[luv2knit]

Wiggle, I am sooo sorry things have gotten so much worse for you. It is good to hear from you again. I am glad you have joined other groups and are getting support somewhere!

 

I know for me, when I drop off, it can either be because I am doing a LITTLE better (what everyone hopes for), or just the opposite! Praying you will continue to find support, and that your symptoms will ease in time.

 

XOXO

[WiggleIt]

Hi Wiggle,

 

Just catching up. Sorry I posted and ran a while back, I had to go off-line all of a sudden for a while.  I've been thinking of you though, wondering how you were.

 

I am glad to hear you got the referral and truly hope they will help. Are they getting you in fairly soon or will you have to wait?

 

Also, that is so scary about all of the other people.  Though I wouldn't wish it on anyone at least you know you are far from alone.  I wonder if you guys could maybe get something done about this, now that you realize there's a whole group of you?  Given that the drugs were given for pain then surely you might be taken more seriously than the rest of us are.  Although of course the priority is getting better.

Thank you.  I am trying to get a lawyer to care, but, so far, nobody does.

[WiggleIt]

Wiggle, how are you? Hope you're okay. 

 

I wanted to ask you when you say you have symptoms of dystonia, what are they? I have many muscle spasms and myoclonic jerks all over my body all day long and mostly lying down, but I don't know if they are dystonia or just twitches. From what I've read dystonia is much more sever and it causes whole body contortions. Do you have this? Maybe you've already mentioned it, but my mind right now is really scattered to remember. 

 

Hope you're healing.  

I have jerks all day, and they get worse when I lay down.

 

I also have the whole body severe contortions.  Those also get worse when I lay down.   

[WiggleIt]

Hey WiggleIt, how are you doing? Just wanted to stop by to check on you, you haven't posted in a while. Hope it means you're having better days.

Hugs

Sorry that the news isn't better.

[WiggleIt]

Hi Wiggle,

 

Just wondering how you are doing, haven't seen you posting much lately and I hope it is because you are finally getting some relief from your symptoms.

 

Let us now if you are ok.

Hi CW,

 

I so wish I could be giving you good news.  Thanks for the time you've taken with me.

[AliG]

 Wiggle, I'm so sorry.  I hope things improve for you, very soon.  We care about you.  Please keep in touch.   Hugs.   Ali.

[Wildflower0214]

Hey there,

 

I am sorry you have had such a hard time. And I'm sorry that you are in the situation you are in. And I'm sorry that all I can do is say Im sorry. I had really hoped that you had gotten better.

 

I don't know what to say, Sometimes there are just no words. Sometimes, I find it more comforting when people actually understand that trying to give me a Pollyanna view of where I am only makes it worse, and it would be more helpful to me for them to just to acknowlege the severity of the situation.

 

I want you to know, I hear you and I believe you. I wish there was more to say. Well, there is. I care about you.

[Wildflower0214]

Also, a man in England just got awarded a settlement for rapid detox from a benzo. He is a co-founder of the Council for Evidence Based Psychistry. Granted, he is an earl...a member of British aristocracy. I'm sure this at least helped his case. But, his case does set a precedent.

 

When I think about it, Im not sure it would be worth the energy to go to court, but at the same time...., it might be.

 

 

Something to think about....

[WiggleIt]

Thank you, Ali and Wildflower. Saying that your sorry are actually the perfect words. Thank you.

 

I am angry beyond belief and am absolutely pursuing legal action. I hope someone takes my case. If they don't, I'll find a way to get my story out.

[Wildflower0214]

http://cepuk.org/2015/07/18/rapid-withdrawal-misprescribing-benzodiazepine-leads-1-35m-settlement-luke-montagu-cep-co-founder/

 

Here is the link to the story about the settlement I referenced above.

[WiggleIt]

I think it's really cruel for people online to propagate the myth that people disappear from these sites because they get better when that's not true. It might be true in some cases, but not in most. All you have to do is look at the sheer numbers of damaged stories versus recovered ones.

 

There's no way that thousands of recovered people are running around NOT shouting from the rooftops. That would be as if someone recovered from AIDS and kept it to themselves. It's simply not human nature.

 

It was naive and misinformed to jump to the conclusion that I was gone because I was better.

[Altostrata]

I am sorry you are having such difficulty, WiggleIt.

 

However, your assumptions about why people may or may not continue posting have no basis.

 

There are many reasons why they might not return, and not having any further need for the support this site offers is one of them.

[WiggleIt]

Thank you, Alto. You and CW have been incredibly kind and gone out of your way a lot to support me.

 

I'm sorry I don't have happier content to post.

[cymbaltawithdrawal5600]

Thanks Wiggle. But our words of concern and the fact that many of us looked up your thread and posted them (not an easy task  with the amount of posts here) might have been missed by you. It is our HOPE that people are better and having a good life when they stop posting here, not our certainty and a foregone conclusion made into a belief that that is always the reason when someone goes MIA from here.

 

This place is about hope and support. We're just people (though there may be a few docs and lawyers and Indian chiefs in our midst) who are struggling and it goes without saying that we want to support our own in any way we can EXCEPT when it comes to confirming someone's belief that they are doomed to a life of no recovery. I draw the line at that and I am sure many others do too. Mods keep an eye on every topic and if a member goes on on on (and in the topics of others and in other parts of the site) in a doom and gloom way they are restricted in the gentlest (but firmest) way possible from continuing to do this. Why? Not because that 'reality' may not be true for the person but because constant repetition is like an insidious virus that can affect the good will of the site and its members. Your condition may take many years to improve (likely) OR you may wake up one fine morning, a gene flips in its expression that day and causes a cascading effect throughout your body and all of a sudden your movements become coordinated and normal (equally likely) OR gradually, over time, the crapstorm of misguided electrical impulses becomes a fine symphony of  movement, looking for all the world like nothing was ever amiss. Again, equally likely.

 

PP wanted to shove the ugliness of protracted wd under the rug because its leader had no understanding or patience for it. It is not like that here. So if you are not well, then you are not well and we understand that. But we like to know how you are doing and you help the struggle of everyone when you keep in touch. It makes us feel good to show concern for others and when others show us concern too we feel good and our healing is boosted. (I can imagine those 2 ladies upthread were thrilled when you told them:

 

 

Saying that your sorry are actually the perfect words. Thank you.

 

How could they not be?)

 

You know that old saying "it ain't over till the fat lady sings?" Well, she hasn't sung yet and until she does, nothing is certain in this world for anyone. I prefer 'hope' myself, though with the way things are going for me I will have to rely on the hope of others because I have none of my own right now.

 

(My apologies to fat ladies everywhere, it's just a saying. Who made that one up anyway?)

[WiggleIt]

<3

[WiggleIt]

Still in month 9 off meds.  

 

Update:

 

-Insides of eyebrows falling out in bald patches, worse in right eyebrow

 

-Right side of body worsened jerks and dystonia

 

-Right eyelids have developed dystonia that forcibly jerks my right eye shut and I have to concentrate to open it slowly again

 

-Developed acid reflux

 

-Food still sticks in throat, but has now started to vomit itself back up into my mouth.  Sometimes this comes from throat vomiting back up, sometimes from down lower, such as stomach or esophagus.  Not huge vomit, but I'm sure you all know the feeling when you throw up in your mouth a little bit and then it goes back down.  Well, that's what I've developed throughout month 9

 

-Temper still on a hair trigger, ready to lash verbal vitriol at anyone for any reason.  I had the complete opposite personality throughout my life before medication exposure

[WiggleIt]

Still in month 9 off meds.

 

Update on new medication-induced symptom:

 

Receding hairline, which is INCREDIBLY upsetting as a woman. My hair on my head has been falling from the roots (as mentioned above) and eyebrows coming out in patches, but it wasn't until recently that I noticed my hairline receding and my widow's peak balding.

[LoveandLight]

The temper is horrible and traumatising, wigglet..for me anyway.

 

When I went on them at 17 I never got angry really, not for little things..now I'm angry at everyone, I swear in my head at people that walk past, I get fits of rage..it's just horrible. I feel like I've had a personality transplant.

[Pugknows]

WiggleIt,

 

My heart aches for you. I am so horrified by the severity of your symptoms and I know how bravely you've been battling this withdrawal beast.

 

We CT'd at the same time. I've invisibly had my arm around you since I read your first post on this forum. I've wept for you many many times.

 

I refuse to give into the withdrawal voices that tell you this is permanent. I know the extreme nature of your suffering tells you otherwise. It's understandable.

 

Have the doctors you've gone to told you these symptoms are permanent? Keep in mind that even the most intelligent and educated neurologists in the world have only studied 5% of the brain! They don't have any greater credibility than the clerk who bags your groceries at the supermarket.

 

Nobody knows the extent to which the brain can heal from damage. Miraculous recoveries from severe brain trauma have been reported worldwide. Please believe you will eventually shed these debilitating symptoms because hope that this is temporary is going to keep you fighting the battles you face every day.

 

I am not suffering like you, but I'm in my own hell too, and I'm alone. The anxiety and mental torture is inescapable for me. I pant and breathe and cry and moan and pray and distract and pace and smoke all day like a mad woman on crack.

 

I lose hope all the time. That's when things get REALLY ugly. We just can't get sucked down into the hopelessness hole because crawling out of it is like clawing through quicksand, gasping for air to get to the top.

 

Please hang in here with me, WiggleIt. We are entering month 10 from CT WD. We are going to recover from this. Okay, maybe a couple of years from now, but we are going to heal.

 

The extreme nature of your pain and suffering is other-worldly. God is other-worldly too. Pray hard, sweetheart. He's your best bet. It's hard to keep the faith, I know, when suffering as badly as you are. It must be impossible for you to not feel abandoned by God. But God didn't do this to you and, believe it or not, He is suffering right alongside you. Put yourself in God's hands. What do you have to lose?

 

I love you WiggleIt. I'm praying for you right now. Pug

[WiggleIt]

August 1, 2015 - Entering month 10 off of psych meds

-Meds were prescribed off-label (means not for mental health).  Psych meds were prescribed for pain that doctors misdiagnosed.  They told me I had a chronic, incurable physical condition and would have to be on meds for the rest of my life.  It turned out to be a pulled muscle.  For those new to this thread, I want them to read this info right away, so that they know that the bad effects of these medications are REAL, and are NOT "all in their heads."

-Hair loss getting MUCH worse.  Coming out from the roots in handfuls.
 

-Hair loss on right side of body is worse than on left. 
 

-Hair on right side of head is much thinner than left side of head
 

-Right side of hairline is more deformed than the left side
 

-Right forearm has visibly lost more hair than left forearm.  There's a semi-bald spot on right forearm
 

-Right eyebrow has more bald spots than left eyebrow

-Right leg also has more bald spots and thinner hair than left leg
 

-For those who have been following my thread, you'll remember that the right side of my body is also the one that the medications left weaker (like what happens to stroke victims)
 

-Right leg still drags, but I've ordered a pink walker so I feel less ugly if I go out in public.  I used to use my dad's walker, but it was dark blue and too big.  Now, going into month 10 and realizing that I STILL am not able to walk again, so my folks and I finally broke down and spent the $200 to get me a walker of my own.

-My swallowing has improved.  Starting to do some solid foods again in small bites on some days

-Brain fog has improved.  Still have unexpected, upsetting episodes of brain fog, but it is no longer 24 hours a day nor 7 days a week

-Stabbing pain in eyeballs is new, especially in right eye

-Right eye jerks itself closed involuntarily.  Not too bad during the day, but the right eye tics and jerks are very bad upon sleeping and waking 

-Light sensitivity has improved a bit

-Sound sensitivity has improved a bit  

[luv2knit]

Are you right-handed? I am left-handed, and with my TM, the left side was affected more. Apparently that was common.

 

It is good that your light sensitivity and sound sensitivity have improved a bit!

 

XOXO