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

[WiggleIt]

My life is a complete piece of sh** because of what those b*st*rd doctors did to me with these poison medications.

 

I HATE THEM, I HATE THEM, I HATE THEM. They are murderers and life-takers, and I'm being punished for their sins.

[WiggleIt]

I'm so unable to do even the smallest tasks. What if I'm incapable of caring after myself again?

[bluebalu86]

I know, I'm the same way. Can't do anything. I stay in bed with my laptop all day long. I can go on walks if my mom comes with me, but can't go out on my own - feel too surreal and brain damaged and totally not myself, as if I've had a stroke. It sucks so bad. I hate doctors and meds and what they did to me. Sometimes I wish they could take a taste of their own "medicine" and suffer the way I'm suffering to see what they're doing to people. But they are just ignorant and clueless... if they knew how damaging this is, they wouldn't do it. They just don't realise. 

[WiggleIt]

Bad night. Only slept one hour then brain snapped awake. Agonizing needles an crawling sensations on head, chest, back.

 

Sorry for typo.

 

Please, Lord, heal me. I know you've already made miracles in my life and it is selfish to ask for more, but I don't know where else to turn. I so much want to life a good life.

 

Please let there be healing at the end of this road, healing that I can still enjoy while here on Earth. I know there will be peace with you in heaven. Please allow me some here, too. I promise I will not waste it. I'll know how precious it is.

[Frustrated]

Bad night. Only slept one hour then brain snapped awake. Agonizing needles an crawling sensations on head, chest, back.

 

Sorry for typo.

 

Please, Lord, heal me. I know you've already made miracles in my life and it is selfish to ask for more, but I don't know where else to turn. I so much want to life a good life.

 

Please let there be healing at the end of this road, healing that I can still enjoy while here on Earth. I know there will be peace with you in heaven. Please allow me some here, too. I promise I will not waste it. I'll know how precious it is.

I pray this everyday.  I just want to enjoy some of my life with my kids before I die.  Give them a mom they should have.   I am so sorry you suffer so much.  It is a tragedy.  All these doctors should be put on these meds for a year then taken off cold turkey.  Maybe when they are suffering they will show a little compassion for the rest of us since they are to blame.

[Martina23]

I pray this also, at least that I can enjoy my children. I love them very much. I do not want to have intrusive thoughts when I approach them. I want to have for them only an open heart and kisses which they deserve so much.

 

Frustrated, we are not the guilty ones, sadly we are only the victims of our money-orientated society.

[Frustrated]

Absolutely Martina.  I agree 100%.  It is always about how much money is to be made.

[luv2knit]

Sounds awesome, Wiggle! Best of luck to you!

[WiggleIt]

Last night was wretched, but I managed to finally get four solid hours of sleep, for which I am grateful.  I hate to be so negative on these posts, but I am really am trying quite hard to heal when you guys don't see me here online.

 

When I am offline, I read, and talk to may family, and sometimes on the phone to a few close friends, and watch TV.  I walk a bit around my house for the few steps that I can and I handwrite in my journal, so that I don't lose that skill to tremors and such.  I always eat well, although I still can't swallow very much and sometimes foods seem to make me sick to my stomach.

 

Sometimes when I'm offline I'm in a wave, but sometimes when I'm offline, I'm working as hard as I can to clean my windows.

 

I know I post a lot of angry, desperate, scared and scary, hopeless things.  But there are many moments of hope I have that I don't trumpet here in my page.  I guess I just want you all to know that I'm not a horrible person all the time.  It's just so hard to show any other side of ourselves in the throes of neurological psych med damage.  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.  

 

    

[WiggleIt]

I just noticed that the two recovery stories I like the most, because they are SO severe in suffering and SO complete in recovering, are by men.  I've read that men recover from this more easily.  Is there any truth to that?

Lossleader and Pax80 are the stories I'm talking about.    

[Frustrated]

Perhaps it is just a coincidence that they are both men. At least I will choose to believe that lol. And you are not a horrible person. You are doing your best in a horrid situation and if you are not feeling happy that is understandable. I am never in a happy state. I just try to put on a smile for my kids.

[Skylarblue75]

Just a drop by to see how your doing? And I think women do get slammed harder with this crap, maybe I'm wrong.

Hugs and prayers

[Laura1981]

Hi Wigglelt,

 

I just came across your thread and I just wanted to send you a big hug.

 

I admire your strength coping with all of this, trying to heal and I share your frustration at the ignorant doctors who play god and screw up our lives.  I'm sure you will heal! I wish you a lot of strength! I subscribed to your thread and I can't wait getting that "I'm better" message in a while.

 

Best, Laura

[WiggleIt]

My dear friends—and new friend!—,

 

A  decent window happened on Tuesday, April 28, 2015.  Nothing was completely gone, but many were reduced in severity.  I'm feeling a but superstitious, so I don't want to report too many details in case I jinx anything, but I wanted to let you know.
 

Your support is astounding. 

[WiggleIt]

There is a new thing I have noticed in the past few days, but I don't know how extensively I need to worry about it: having more trouble with spelling than usual.  I have to pause A LOT before I can string together the correct spelling of words that have never given me a day's trouble.

Although my speech has improved SO much (so, so much), I experienced enough trouble with it overall that the tiny nagging fear of losing my ability to communicate still sticks in my head at times, so if I'm not whipping out seamless spelling as if I were still standing in front my English comp students, I can't help but get a little freaked.

[direstraits]

hi,wiggleit,

           I know you've been having ahellish journey but am so glad to read you're finally seeing some improvements!

 

this is fantastic news-so happy for you!

[luv2knit]

Wiggle--A window?! How awesome is that?! You are going to heal. We all are. It just takes more time than we would like.

[WiggleIt]

Body zaps returned

Brain zaps returned

Were gone for two weeks

Now returned

They wone me up after only two hours' sleep

Going from head to toes and forcing my hands and toes to curl up

My brain feels as if being electrocuted

 

Am convinced this will never end

Am convinced this will kill me

Will never be fully healed

Will only ever live life to enjoy half a day of semi-peace here and there

Will never be well enough to have life again

 

Please help me

 

New things past 24 hours:

A small handful of all-natural potato chips, very salty

Half a butter croissant

(I was very proud to chew and swallow these, but did they hurt me?)

[WiggleIt]

Has anybody healed from having brain zaps and body zaps this far out? Someone who did not reinstate?

[Wildflower0214]

I think you will get better because you were healthy before. I don't even know why I am posting this, as being on here in a public way now induces panic and fear of being traumatized yet again.

 

But, in any case, you were very healthy before, you will be again. But, unlike some other people who like to spout blind optimism, I will say that I think it may take a while for you to be 100%. I'm not a fan of unfounded optimism. I think it sets one up for discouragement and then despair. I find it more useful in this process to accept that it may be some time before I am totally better... Instead of going on and on about how I'm going to be the exception to the rule and be recovered in two months. Because, that simply isn't reasonable.

 

There is reason for hope. For you, and for all of us. We just have to stay alive long enough to heal.

[Wildflower0214]

In answer to your question.....ya, the food could have made your symptoms worse.

[Flowers]

So sorry you are suffering Wigglett.

 

it must have been so nice for you to be able to eat something solid. What a shame that this might be having an adverse effect on you.

 

i find that my body craves sugar and if I give in to it I pay for it the next day with muscle spasms and pain. Who knows what is going on inside our bodies that can also affect the mind.

 

Hope you manage to get over the worst of this soon.

 

Love from Flowers xxx

[Pugknows]

WiggleIt, you're going to be okay. Just get through one more day. You'll heal eventually. Try not to ramp up thinking that you're worse. You're not worse. You're not fully recovered either. You were able to swallow. That's awesome. Keep swallowing and you've already beaten down a symptom. Eat all day. Whatever you can shove in you. Soft foods, pastas, oatmeal, anything you can swallow. One symptom at a time. Keep fighting!

[WiggleIt]

Yesterday, I was able to stand up in the shower for part of the time, instead of having to sit in the shower chair the whole time.

 

Today, my parents and I tried to go into a small toy store, but had to leave in just under ten minutes. Too many colors, noise, lights, and people moving around overloaded my nervous system and aggravated the myoclonic jerks and pins and needles all over my body. It was horrible.

 

Then, we tried to go to dinner at my aunt's house and it was the same disaster. Had to leave after about twenty minutes when the noisy chatter and lights completely overwhelmed my nervous system. I even had in earplugs and was wearing sunglasses, and still couldn't handle it.

 

It was a failure. A profound, devastating, soul-crushing failure.

 

Plus, there's a new person on here whose page I just saw who is a year off meds and doing terribly.

 

So tired of the delusion that I'm better, just to have the physical symptoms derail me into complete disability at the slightest attempt to do something normal.

[Pugknows]

Oh WiggleIt. I'm so sorry you feel down about your ventures out into the world. I react the same way when I have to go to the store. Otherworldly is the only way to describe it. I race home to pace my backyard and smoke and then lay down. Constant stinking reminder that we're in a smelly sh*thole of an existence right now.

 

It's temporary. Everyone tells us. We can't see it, so we have to BELIEVE it. Okay, sweetheart? KEEP THE FAITH THAT THIS IS TEMPORARY.

[Cdav]

Hi Wiggle, 

 

I'm sorry about your bad experience going out. I'm sure it had to be heartbreaking. But don't forget the improvements you have made. Unfortunately this can take a long time. i've been battling with this fact myself very much, and only causing more distress to myself. You used to rarely have any windows, and now you're had them! So you're on the right track. 

[WiggleIt]

Thanks, Cdav.  I've been wondering about you.  You've been gone so long!

[WiggleIt]

I swear to f***ing gawd, I better be able to listen heavy metal music again someday without getting overstimulated.  Hard rock was a HUGE part of my life.

[WiggleIt]

Severe ear pain has developed. Please tell me if you have recovered from this.

[UnfoldingSky]

Sorry to read you are being overstimulated Wiggle.  I had that too in a really bad way, it does eventually go away.  I couldn't handle busy environments, light, noise, even having family over was too much, too many people talking at once and I couldn't follow what was going on.  And I had severe issues with music intolerance, oh boy, for a time there was exactly one recorded CD I could tolerate and then some live accoustic music, the rest of it did weird things to me.

 

So this isn't unusual for withdrawal at all and while it's atrocious to put up with it does diminish and goes away eventually.  Now I can tolerate tons of music I wouldn't have been able to in the severe phase.  You will get there too! I know it doesn't seem like it right now, but you will. 

 

Thinking of you,

 

US

[UnfoldingSky]

Oh and about the ear pain, I don't know if this is what you are having but, I would get pain that seemed to relate to my jaw, which I had issues with.  Hasn't happened in a long time. 

[WiggleIt]

Sky, I have missed you so much and hadn't seen you around these parts in SO long!!!  I'm so happy to hear from you!!!  Your encouragement is invaluable as always, and I hope you are doing well—better than well; I hope you are doing amazingly! 

[WiggleIt]

I had some decent days, so I was off this site for a while.  Plus, I found some new groups via social media and have asked some questions there.

I'm having some decent days.  The decent days are never 100% clear, but they happen more often than they used to.  That being said, the bad days still throw me for a loop.  Something physical that I'll think has improved will come back, which then causes me to worry that I will never recover.     

Trying to reintroduce soft solid foods and having weird CNS reactions when I do.  There is a thread on this site about eating being an activating activity that ramps up physical symptoms, and I certainly am suffering from that, despite eating mostly healthy foods.  Even the soft veggies are causing physical reactions all over the rest of my body: head crawlies, jerks, short of breath, etc.  Will pray that this improves.

Yes, I am a little better.  Not better enough, but better.  

 

[bluebalu86]

Oh WiggleIt, I'm so happy to read that you're doing a little better. I was wondering what's going on with you because you stopped writing for a while. I'm so glad you're having some windows now. So so happy for you. You will get much more of them in the future. 

[luv2knit]

(((Wiggle)) I have had a few decent days here and there too. It almost seems to make it worse (for me) when everything comes crashing down again Hopefully very soon the windows will get better and longer, and the waves shorter and less intense.

[WiggleIt]

Eating food is ramping up my symptoms and I'm eating REALLY healthily.  Please help.  Please SOMEBODY tell me that this goes away.