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

[Wildflower0214]

It does eventually... But... Eventually is a term not bound to a certain time frame... So, when? Who knows? It's not permanent, that is all know.

[WiggleIt]

10:52 PM - Wave of physical problems started and triggered anxiety.  It is now 11:46 PM and I am still in the wave.  I am trying to remember that I was recently in a window, but the way this goes is that you feel safe in the windows and trapped in the waves.  When you're in one, you forget that the other exists at all.

 

I know a one-hour wave doesn't sound like a big deal, but I am just trying to give a real-time update as I hang on for dear life.  I don't know when this will end… Will it be hours, days, weeks before I see a window again?

[bluebalu86]

"you feel safe in the windows and trapped in the waves" 

 

In my experience, that's exactly what happens. It's like you're in two different parallel universes. Try and hold on WiggleIt. That's all we can do. Hold on and try to distract and reassure ourselves. It will pass, it always does. But it's horrible while it lasts. Remember the good times. They will come again and will become more and more. 

[AliG]

     Hi WiggleIt, I've just been reading some of your thread.  You asked if anyone who had "brainzaps", had got over it, who had "cold turkeyed".   I had that and also "pins and needles" on the back of my head.   All gone , now.    After reading your thread , I think you have a lot of advantages.  The fact that you are young , and also that you were not on the drugs for more than ,  what - 3 - 4 yrs.  I hope I have that right.   I'm not meaning to minimize any of your trauma. I just want to say, I think there is a lot of hope, here.  I just wanted to say "hi" and wish you the best, in your recovery.  I think it is a "withdrawal" symptom, that we think we won't heal. The fact is, that we do . It just might take some time.   Sending positive thoughts your way,   Ali.

[WiggleIt]

Ali G, you are not minimizing anything, you are being encouraging, and I thank you for it!

[Frustrated]

Thanks for visiting my thread.  Your input is valuable to me.  I have so many issues I did not accept the bladder problem with open arms.  It is distressing to say the least.  I hope you are coping ok.

[Cdav]

I'm so sorry about the wave Wiggle. 

 

I understand completely what you say about the windows and waves. Like Bluebalu, they seem like two parallel universes. 

 

I always make the mistake of thinking that I'm finally healed during a window and get my hopes up and make commitments and plans, and then I get the waves and think I will be like that forever and just want to die, that is also a mistake. 

 

You've shown improvements, I do think there is a lot of hope for you. I know it's hard to see that during waves. 

[luv2knit]

(((Wiggle))) I agree there is hope, and I do believe you have shown improvement. I also agree that it is difficult to see that when you're in a wave. Everyone says to remember the windows, but that is so difficult, isn't it?!

[Petunia]

 I don't think "withdrawal" is a good term for this.  I've seen people have withdrawal from recreational substances and THIS is not it.  I also think "discontinuation  syndrome" is too benign.  The most accurate phrase is "tardive neurological damage," in my opinion.  

 

 

I agree with you Wiggle, withdrawal might be an accurate description for what happens right after someone stops taking a drug, but this sometimes long process of recovery is obviously something different. I'm wondering if you have read Rhi's plant trellis analogy. Here is a link to it if you haven't:

 

http://survivingantidepressants.org/index.php?/topic/6447-best-of-sa/?p=91582

[WiggleIt]

Six months and three weeks off meds: began experiencing bad hair loss this month. Bad. This is completely unexpected this far out. I've heard other people get it, but thought I had dodged a bullet. I'm completely wilted inside. Just one thing I wanted to hold onto, just one. And I always prided myself on my hair... My hair was known among my social circle for being gorgeous. And even though I've been too damaged by meds to style my hair, I thought at least I was losing it like other people were. I just can't with this pain anymore.

[AliG]

  Wiggle, I hear you. I thought I had "dodged the bullet", as well.  Now I'm noticing some thinning.  These "drugs" want to take everything, from us.  I haven't worked out whether they just "fry"  your thyroid (leading to hair loss.), or if they just "stuff" up your system so much that the "stress" of it all, causes your hair to fall out.  I liken it to "chemotherapy"!!!   I think it's the last assault as a woman, and I feel your pain. Having said that, I believe , given time , our "tresses", will return to their "former glory". (LOL). Like everything in withdrawal, it's just a matter of time.     Stay strong.

[luv2knit]

So sorry, Wiggle. My hair has always been really thick. A couple of months back, I absolutely had to manage to get it cut. When I went in, my hairdresser commented on how my hair had "thinned out":(

[bluebalu86]

My hair started falling out on Cipralex. That's why I wanted to stop taking it. When withdrawal started, I had a massive nervous breakdown from the suffering and chopped off all of my hair. Now it's really short and I look terrible, but I don't care that much. That's the least of my problems. 

[WiggleIt]

Six months and three weeks off meds: no improvement in vision.  The world looks like I am wearing glasses that are too strong.  Everything looks too sharp and too far away, like when you look in a rearview mirror and it says "Object in mirror are closer than they appear."

This is bullsh**.  It's all bullsh**.  I can't imagine the world looking this way for the rest of my life.  Has anyone recovered from visual problems like this? 

[WiggleIt]

Update:  I had a VERY bad stretch of a few hours today.  Checked my symptom calendar and it looks like it's been about a week since I had a day this bad.  

On a good note, I received a message from a man I like who I went on a few dates with before the meds screwed up my life.  Maybe someday I will find out if he and I actually have a shot, but I will have to go through much more recovery before I can see him again.

There are plenty of recovery stories out there, but there are also plenty of non-recovery stories out there for the severe cases like mine.  Obviously, I choose to focus on the good stories, but I wonder if someday I will have to face the music of the hard truth if I don't get well enough to live a normal life again.  

What do you guys think?

 

[luv2knit]

Stay positive! I hate that you had a rough day, but the fact that it's been a week since you had a day that bad is a good thing. I was in the same situation yesterday--very bad day, but last REALLY bad day was 8 days before!

 

Hang in there... You will heal!

[Wildflower0214]

Update: I had a VERY bad stretch of a few hours today. Checked my symptom calendar and it looks like it's been about a week since I had a day this bad.

 

On a good note, I received a message from a man I like who I went on a few dates with before the meds screwed up my life. Maybe someday I will find out if he and I actually have a shot, but I will have to go through much more recovery before I can see him again.

 

There are plenty of recovery stories out there, but there are also plenty of non-recovery stories out there for the severe cases like mine. Obviously, I choose to focus on the good stories, but I wonder if someday I will have to face the music of the hard truth if I don't get well enough to live a normal life again.

 

What do you guys think?

 

 

Honestly, I do not believe that. I believe everyone gets better, eventually. I don't believe those stories. And, the reason I don't, is because Alto and Rhi have probably the most experience actually communicating with people in WD. And, they both unanimously say that people eventually recover. The time it takes obviously varies from person to person.

 

Also, I don't believe people's horror stories because often, when they recover, they never come back to give their stories. Alto has mentioned she knows of quite a few people who have recovered from rough WD, and she has asked them numerous times to come here and post a recovery story, and they won't.

 

People do not want to discuss this stuff when they get better. Being on this site when I'm having better days is the last thing on my mind and I stay as far away from here as possible. And, I think you kinda do the same thing. I think this is the norm.

 

I don't even know if I will ever write a recovery story. I want to give people hope, but, I also want to move on. I don't know how much of my life I will devote to rehashing every horrifying detail of my recovery. I don't think I will do that. I don't think a lot of people do that. This is traumatizing. And, most people leave it in the past.

 

All of this makes it look like people don't recover sometimes, but they do. People recover from major brain injuries and all kinds of things thanks to neuroplasticity.

 

Also, I have seen a lot of people show up and claim they aren't healing and never got any better, but then you come to find out that while they were off the original drug for 2 years, during those two years they also tried other meds, or drink and smoke pot. I'm pretty sure the experimenting with 5 other AD during those two years probably affected their WD. But, many times, they fail to mention all of this until after they have scared the hell out of eveyone.

 

Anyways, what I am saying is you are gonna get better. Who knows how long it will take...probably longer than you would like. But, you will recover.

[Frustrated]

Wildflower is absolutely correct. If I was completely healed and felt good again I would be out and about living a life I haven't had for years. I would like to think I would post a success story to give others hope but who knows really. I am sure time will show you healing. I have to believe that.

[WiggleIt]

Wildflower and Frustrated: thank you.

Today's update: Major recurrence today of myoclonic jerks (while awake), dystonia (involuntary contortions of body), and inability to walk because legs jerked repeatedly out from under me and arms contorted so it looks like I'm having Grand Mal seizure.  It was bad enough to where I needed my walker again, which is discouraging because I had been able to get by with a cane for about two weeks.

Suffered recurrence of inability to speak/speech impediments again today—where I can barely think a coherent thought and, if I can, certainly cannot open my mouth to say it.  In those episodes, I have to use gestures to communicate.  It's been (I think) two weeks since I had an episode where I was semi-mute.  I say semi-mute, because I am usually able to say the word "Please" during these episodes.  Additionally, it bears repeating that these episodes are not prompted by anxiety.  The episodes are always preceded by a neurological, sensory, or physical stimulus that I USED to react to normally prior to being exposed to psychiatric medications.           

 

Now almost seven months off meds (tricyclic and benzo). Very discouraged about whether I will ever be able to recuperate motor function, or will always remain only partially able-bodied.

[LoveandLight]

Sorry you have to go through this. Hugs xxx

[WiggleIt]

Sun intolerance.  Was in the sun for 30 minutes today and skin flared red like a tomato, which is alarming as I am of Hispanic and Arabic descent and—prior to ever being on meds or suffering from protracted withdrawal—I used to lay out in the sun for 2-3 hours and would barely catch a tan.

[AliG]

 I'm so sorry that everything's so hard , at the moment. I do believe, it's temporary, and will improve over time.  My thoughts are with you.

[WiggleIt]

 I'm so sorry that everything's so hard , at the moment. I do believe, it's temporary, and will improve over time.  My thoughts are with you.

Thank you AliG, you are being such a kind support system for me.  I am sorry that I am not able to do much racing these days to stop by your thread, or my other friends' threads.  It seem to go in cycles.  For a while, I will be able to visit and comment a lot, and then there will be a while when I just can't handle it.

[WiggleIt]

Dystonia and myoclonic jerks still very bad.  

Does anybody know of any dystonia recoveries I could read about?

[AliG]

 Wiggle, you're going through so much. Don't even worry about "threads".   I'm sorry I can't help with the "dystonia".   (Google??)

[WiggleIt]

Terrible insomnia. Brain keeps clicking itself back awake as I begin to drift off. Myoclonic jerks throughout body waking me up. My body will begin to relax into sleep mode with the muscles beginning to relax, then they seize up.

[luv2knit]

(((Wiggle))) Sorry, I'm not getting around to threads much either. I think that is the case with many of us right now. The nervous does a lot of healing, over time. I can tell you that from my experience with TM. I can say that, at 10 months out, I have had bouts when my symptoms (especially akathisia) have seemed to be progressively worse. This has been going on since about month 4. Thought it was supposed to get better--not worse--but others have said the same, so I'm thinking perhaps this is nornal. Not sure it's really "windows and waves", because I don't really feel I'm following that pattern yet. Some have basically told me it's too soon. That is hard to hear, but perhaps it is true.

[WiggleIt]

luv2knit,

 

Thank you for reminding me about your experience with transverse myelitis.  It is exactly the kind of reminder I need right now.

[WiggleIt]

Dystonia bad 
 

Myoclonic jerks bad

Painful tingling and tremors on EVERY part of body: face, hands, ears, too many to name.

[luv2knit]

:( So sorry, Wiggle. The tremors actually returned, briefly, for me a week or so ago. I thought they were gone. I do still frequently get numbness/burning/tingling. At times, it is mostly extremities, but sometimes, even my face and ears burn.

[WiggleIt]

luv2knit,

My ears have also burned and felt painful pins and needles there on occasion.  I'm so sorry about your tremors  But I hope that since your body was alb to heal itself from transverse myelitis that it learns to heal itself from this, too.  

[WiggleIt]

I can't do it. I cannot live with tardive dystonia. I don't want to.

 

I haven't found one f*cking recovery story about it, but I HAVE found people saying they STILL have it after two years, five years, whenever.

 

I don't want to try and make a life with this. I don't want to learn to live with it.

[bluebalu86]

In April when I made a dramatic cut in my antipsychotic I developed sever twitching, jerking of muscles and myoclonic jerks along with a sense of psychological terror but only when trying to relax and fall asleep, not during the day. I also had jerking of muscles when trying to fall asleep on Velnafaxine and Citalopram but they stopped when I discontinued them. I guess my withdrawal will be similar to yours. 

 

WiggleIt you said before that you were having some decent days, do I remember correctly? 

[WiggleIt]

Decent, but still disabled.

[WiggleIt]

I've figured out why people don't come back and post recovery stories about medication-induced dystonia. Because there aren't any.

 

Those people aren't out enjoying their lives like normal and forgetting about the antidepressant support groups. They have joined different support groups for people with movement disorders.

 

I don't want to live like this. I'm done. I'm not going to harm myself, but I am sure as h*** done thinking I'm going to magically heal from what is obviously a permanent movement disorder.

 

It's over. I'm not going to fool myself into thinking about being out in the real world again. I will learn to make my life solely inside my home, with my family, and will continue denying visits from non-family.

[bluebalu86]

I think your situation will improve but will probably need more time. 7 months is still early. Are there any improvements, no matter how small?