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

[WiggleIt]

Stupid jerks and wiggles again today.  Not quite as bad as usual, but still d*mn bad.  And face scrunching.  F*ck this.

[Maybe]

At the moment I am 5.5 years out of my initial negative reaction. The acute phase lasted for 3.5 years, with waves and windows from the start. I cannot even remember how it was when it got better and better. I still have symptoms and they can even be very bad for some hours after I did something wrong.

 

So if someone experiences a recurrence of symptoms after feeling good (recovered, how do we define that state in the first place?) for quite a time, I think that the wave will not be as bad and long as previous waves. Though I guess it always depends on why this wave occured in the first place. Out of the blue or maybe because induced by medication?

 

So I would not be too afraid of any wave that far out, the chances are not that high and if it comes, you already know how it feels and that it won't last forever (or better, be quite short).

[luv2knit]

I'm so sorry, Wiggle

[Pugknows]

I second your f*ck this! And pray for everything to calm down for you, Wiggles. Hugs.

[UnfoldingSky]

Oh Wiggle, this sucks so bad for you..Makes me angry you can't get a long break.  Praying this latest wave passes.

[WiggleIt]

I'm not seeing 100% recovery for people as severe as me, not on this site and not on benzobuddies.  Straight up not seeing it for people with physical symptoms this severe.  I think pax80 is the ONLY one, but they haven't said whether they wiggled and jerked.  I know they couldn't walk or eat, which I can't, either, but if they didn't wiggle or jerk, then it means they weren't as bad as me.

 

When I first saw another member post something like this, I didn't want to believe it was true, but the more recovery stories I look through, the more I see that physical symptoms this severe only recover partially at best, even five plus years out.

[Pugknows]

((((Wiggle)))) I'm on benzobuddies too (Sofa King Done). I hardly go on there because it's too impersonal and people don't really reach out to others that much. I've read almost every success story on that site and there were lots of people worse off than you who made a full recovery. They had strokes, brain scar tissue from seizures, many illnesses and diseases during withdrawal and eventually recovered. I will try to find them for you, okay? We are all going through some kind of alternate hell right now that is different than the normal sh*tty we've gotten used to. Maybe we're about to turn a corner.

[Pugknows]

((((Wiggle)))) We are all going to recover from this BS.

[Wildflower0214]

Wiggle....I really do think you will recover and there are a lot of stories out there. You will recover.

[WiggleIt]

((((Wiggle)))) I'm on benzobuddies too (Sofa King Done). I hardly go on there because it's too impersonal and people don't really reach out to others that much. I've read almost every success story on that site and there were lots of people worse off than you who made a full recovery. They had strokes, brain scar tissue from seizures, many illnesses and diseases during withdrawal and eventually recovered. I will try to find them for you, okay? We are all going through some kind of alternate hell right now that is different than the normal sh*tty we've gotten used to. Maybe we're about to turn a corner.

I agree that it's a less personal site on benzobuddies.org. I will look for you next time I am on there. I kept the same name, even though you're not supposed to.

 

Thank you for being willing to look through those recovery stories. I've looked through a bunch, but they all sounded like partial recoveries to me

[WiggleIt]

Wiggle....I really do think you will recover and there are a lot of stories out there. You will recover.

Thank you, JDM/Wildflower. I wish I knew why you believed in me so much.

[Wildflower0214]

Btw...had to change my name. My psych doc looks at this site as case study material. His whole practice is tapering people off of this stuff. And there was just enough info for him to have possibly figured out who I was. And I'd prefer that not happen.

 

I believe in you because you are resilient, stubborn as a donkey, and because you have faith in God. I truly believe you will make a full recovery. I don't think you will ever be the same person you once were ever again. But, I think in time you will be grateful for the person who you will have become because of this.

 

I'm not in the habit of blowing smoke up people's behinds. It's just not my style. I have a firm anticipation of your improvement. I'm not just trying to make you feel better. I believe it.

[luv2knit]

You will get there, Wiggle. I guess I have a different viewpoint, because I try not to read too much--even the recovery stories. There's just not that much I can relate to, because my situation is different than most. The support is priceless, though.

[Pugknows]

(((((Wiggle))))) March is the month we all lift our baselines. I feel it. Exhaustion, followed by despair, followed by worsening of symptoms, followed by improvement. I see a pattern.

[Pugknows]

Praying to God for all of us that this is the truth He wants us to see.

[luv2knit]

I pray you are right, Pug.

 

Thinking of you, Wiggle.

[Cdav]

Hoping you're feeling better Wiggle. I agree with luv2knit, try not to compare yourself to other people's recovery or lack of recovery. The support we can get from here is what will help us survive and make it to recovery. 

[UnfoldingSky]

I'm not seeing 100% recovery for people as severe as me, not on this site and not on benzobuddies.  Straight up not seeing it for people with physical symptoms this severe.  I think pax80 is the ONLY one, but they haven't said whether they wiggled and jerked.  I know they couldn't walk or eat, which I can't, either, but if they didn't wiggle or jerk, then it means they weren't as bad as me.

 

When I first saw another member post something like this, I didn't want to believe it was true, but the more recovery stories I look through, the more I see that physical symptoms this severe only recover partially at best, even five plus years out.

 

Wiggle, there was a case I think I told you about that I read, about a guy who had TD issues as severe as yours, who had it for months then abruptly it stopped.  He had constant jerking too.

 

So please don't count yourself out of recovery. I know many people in my life off-line who are miracle stories, survivors of various problems--including a woman who was told five times she would die of cancer and every time she beat it. 

[Cdav]

How are you doing Wiggle? 

[luv2knit]

Stopping by to say hello, Wiggle.

[UnfoldingSky]

Hope you are having a window Wiggle, I miss you.

[WiggleIt]

Can somebody please tell me why there is something wrong with my stomach?  Food going down my esophagus feels wrong, gets stuck.  Still can't swallow.  And there is something wrong when the food hits my stomach.  It feels like it's a foreign object that shouldn't be inside my stomach, like foreign objects that shouldn't be going down my esophagus.

Please help me.  

 

I'm sorry I haven't been around for anybody else lately.  I just can't.

It feels like physical poison when food is going down and when it's hitting my stomach.   

[Cdav]

Hi Wiggle, I'm glad you wrote, and I'm sorry about your eating problems. 

 

I really don't know what causes that exactly, but it's probably due to the TD. I read on a forum about a person with a similar problem (I think), who takes rhodiola and it helps. 

 

Here's the link

 

http://www.medhelp.org/posts/Neurology/Rhodiola-For-Tardive-Dyskinesia-Any-Suggestions/show/735663

 

Sorry you're having a tough time. I really wish you could get a break from all of this. 

[Wildflower0214]

Can somebody please tell me why there is something wrong with my stomach? Food going down my esophagus feels wrong, gets stuck. Still can't swallow. And there is something wrong when the food hits my stomach. It feels like it's a foreign object that shouldn't be inside my stomach, like foreign objects that shouldn't be going down my esophagus.

 

Please help me.

 

I'm sorry I haven't been around for anybody else lately. I just can't.

 

It feels like physical poison when food is going down and when it's hitting my stomach.

When it hits your stomach, do you mean like at the end of your esophogus kinda feeling? I know this sounds stupid, but I'm trying to figure out where you are speaking about. I have had food get stuck and then it seemed to sit at the entrance to my stomach and made me uncomfortable and it burned. So, I think I have had a form of what you are talking about.

 

I'm so sorry. I wish this would stop. Are you still drinking from the straw? Or are you trying to introduce solid foods?

[UnfoldingSky]

Wiggle, I'm so glad that you posted, I was worried about you.  I wish you weren't suffering so.

[Frustrated]

I have issues with my stomach and sometimes with swallowing and where food doesn't feel like it is going down properly. I am sorry you are suffering. I hope it gets figured out.

[luv2knit]

Wiggle, thinking of you. Hope you see some relief soon.

[WiggleIt]

Hi Wigglelt,

 

It's been a while since I corresponded with you as have been isolating a bit, needed a break as one can be completely absorbed by the WD process, and migrated here from Paxil Progress after it closed, and for which I felt some responsibility (read guilt), and which I''m now over and feeling much more comfortable here. 

 

I noticed you again in the 'Introduction' section, and remembered that you believed you had tardive dyskenesia, just like me. 

I also believe that I suffered some form of dystonia, where my right arm would involuntarily place itself behind my neck, I had no control over it. 

 

I also had an involuntary movement of my right hand that had my hand constantly go to my lips and mouth.  I had no control over that either.  My right leg dragged behind me, and often as not I could barely drag myself around my flat (apartment).  All of

the jerks, twitches, tingles, face muscles drooping like a bloodhound, and all of the other symptoms that Brassmonkey describes as WDNormal ere present and very frightening and like you thought I was a worst case scenario and that I would never recover.

 

Like you, I am in a conundrum (diferential diagnosis) in that when my psychiatrist switched me from Mirtazapine to Lexepro I got Serotonin Syndrome very, badly and thought I was going to die, and death didn't seem like too bad an option at that point.  I had a seizure during sleep as woke up on the floor with a graze from by bedside table and a badly bitten tongue.  It was hell on wheels.

 

I don't know whether the TD (which I now have control over) or the dystonia (gone now) were caused by having Serotonin Syndrome or the switch to Lexepro.  In  the end I gave up trying to work it out, and just believed everyone here that it would get

better, and it has........heaps better.

 

Now that I am down in the lower ranges of Mirtazapine I have noticed that the TD (tongue, lips, etc.) have reappeared, but not so nearly as bad as when I was acute.  The dystonia, has disappeared.

 

I was also not measuring my cuts in the pills accurately enough , and am now having my pills compunded by the local pharmacist.  Wish you lived in Australia, our health system seems so much better and more accessible.  I pity the poor innocents who live in countries where life is cheap.

 

Just wanted to make contact Wigglelt as I can tell you are suffering and I remember it well, 18 months back.

 

I am not a religious person, just a simple humanist who cares about the world and its people's.  I care that this is happening to you and wish that it were not, but them's the breaks in the big city, hey?  No way 'round it but through it.

 

I cannot tell whether you, I or anyone else will completely recover, I just know that people do, and their stories are there to read. 

 

I can say with certainty that I have improved markedly since when it was hell, and I use this as my guage in anticipating full recovery.

 

I read your posts from start to finish, and though I don't know what is happening for you today (see Rubik's cube) , but overall your posts seem to indicate a slow but positive improvement, and we need to be grateful for small mercies, hey?

 

Thinking of you, and hoping that today Rubik is just a few turns away from coming up trumps.

 

No wigging out Wigglelt

 

As always ....... steeley          

 

Hi Steeley,

 

Sorry it's been a while since I've written back, but I remember that you said you had some form of tardive dystonia.  I've got that, too, but I didn't really realize it until now, even though my ER diagnosis said "dystonia" on it.  I'm off all meds now and still have dystonia.  

[Wildflower0214]

Hey there. I'm sorry I've been from silent. I'm struggling. I hope you are ok...hangin in there.

[WiggleIt]

Ugh, seriously, if people can work, go to school, and walk and swallow and exercise during their withdrawal, then I wish they would stop whining.

 

If your symptoms aren't bad enough to halt your life 100%, then count your blessings.

[WiggleIt]

Ugh, seriously, if people can work, go to school, and walk and swallow and exercise during their withdrawal, then I wish they would stop whining.

 

If your symptoms aren't bad enough to halt your life 100%, then count your blessings.

[Frustrated]

Ugh, seriously, if people can work, go to school, and walk and swallow and exercise during their withdrawal, then I wish they would stop whining.

If your symptoms aren't bad enough to halt your life 100%, then count your blessings.

Agreed! I hope you are able to do some of those things too soon.

[luv2knit]

Sorry things are so rough right now, Wiggle. I'm finding it hard to keep up with everyone right now, but wishing you well. XOXO

[Pugknows]

((((WiggleIt)))) I agree with everything you said. I couldn't hold down a job or any amount of food to save my soul. And exercise? Fuggedaboudit.

[Cdav]

You're right Wiggle. I was once in that place, during acute withdrawal on 2013 from several meds, life was 100% halted for about 6 months. Things have improved a lot and sometimes  I forget about that, I still suffer and somedays are completely halted but it does get better and I have my windows and waves. It doesn't matter if your case is severe, you will get windows, and you will notice improvements, and you will heal. 

[WiggleIt]

You guys are the best.

 

Will my vision get better?