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

[WiggleIt]

What is wrong with the back of my head? Why does it feel like it's missing and melting all at the same time?

 

I though I was better. Tried to leave house with folks. Everything was too bright and too loud and I got jerky and my head feels like it isn't there in the back, but also like it's overloaded with information. It's not numb, though. It's the same way my legs feel like they're not attached to my body, but they are. It's that feeling with my head.

[WiggleIt]

I just tinkled on myself, which, in terms of withdrawal effects, has got to be the easiest thing I've put up with during this whole disgusting hell on earth.

[Freedom15]

Hi wiggleit sorry to hear your still continuing on in you CT madness. I send positive vibes to you and really hope you get some relief soon. Have any off your symptoms Carmed at all yet ?

[luv2knit]

Praying you get a break soon, Wiggle! Hang in there!

[WiggleIt]

Major anhedonia and hatred of everyone and everything have set in.  This is not rage, mind you.  I don't see why people complain about anhedonia so much.  Sure, it's awful, but at least it's not physical problems.  If I weren't still suffering so badly physically, this anhedonia would be a piece of cake.

Oh, boo hoo, so you don't feel anything, or else you feel really bad?  Self-pitying babies.  If I didn't have myoclonic jerks, dystonia, or swallowing trouble, and if ALL I had to deal with was anhedonia and hatred, I could kick their butt and heal myself.  But there's no damn way to cure the physical damage from these meds.  It's the physical problems that cause the emotional ones, so if you don't have physical problems getting in your way, then stop being a baby.

My whole life, I've been overly sympathetic and understanding of people, and that was stupid.  Nobody to whom I ever extended empathy ever deserved it and they were all a bunch of "poor me" whiny babies with NOTHING wrong in their lives, except that they didn't know how to get out of their own way.

It's April 2015 now and I've been off meds for five months and six days.  Lost all hope of physical symptoms disappearing, since I've never seen anybody as bad as me recover completely physically.    

[Cdav]

I'm so sorry you're still experiencing all the horrible physical symptoms. I do think you will recover, but it might take a much longer time. I do still believe medication can help some physical symptoms, but I know you don't want to go that way. 

 

I get how you would prefer anhedonia from all your distressing physical symptoms. But believe me, the emotional symptoms of withdrawal, the anxiety, depression, horrible thoughts, panic attacks can sometimes feel physically torturing too. 

 

I feel for you, because you have the physical symptoms and the emotional symptoms as a result. You've been really brave enduring this for 5 months. I think you need to give it more time. Many of us have been through this for years, with the physical and emotional symptoms. Maybe not as bad as yours, but still we have seen improvements. You will too, I'm sure. 

[WiggleIt]

Cdav, I've turned into a completely wretched person. Listen to how cruel I am. I never had a cruel bone in my body before.

 

I would rather die then let anyone put medication in my body again.

[Frustrated]

I don't think you are cruel Wigglelt, I think you are upset and frustrated.  I understand everything you said about people who don't suffer physical ailements.  If you have ever visited my thread than you know that I suffer terrible muscle pain and issues in my legs, back, neck, arms, and chest.  I also have swallowing issues but mine seem to come and go.  I wake up everyday in pain and weak, and sometimes just walking to the kitchen seems a chore.  It is frustrating when you hear people talking about how badly they are suffering with seemingly minor issues like not feeling anything.  I wish somedays that I couldn't feel anything so I could have a break.  Please don't beat yourself up.  It is very hard for someone to understand chronic physical pain and impairment unless they feel it everyday.  Those people probably do think they are suffering because they don't know how much worse it could get.  You do.  I hope you find some healing soon and get a break from your suffering.

[luv2knit]

(((Wiggle))) Don't really know what to say, but I am wishing you healing, and keeping you in my prayers.

[Cdav]

Wiggle, you're not a wretched person. I'm sorry if what I said made you feel like that, I've just been going through very painful emotional symptoms. I know the physical and emotional symptoms can make us feel and act like people we are not. This is the most disheartening thing of all of this situation, losing our personalities. 

 

But I'm sure beneath all those spiderwebs and thorns of horrible physical symptoms, and the anger and horrible thoughts, you are still you and you are a very good person. We are still the people we were before withdrawal, whatever we are like right now is not our true selves. Don't feel guilty about feeling angry or even if you feel like other's problems are stupid, or any other feeling. All of this is normal for someone going through WD. 

 

Just earlier today I had a bout of anxiety and akathisia and I can't help feel but suicidal and scream and try to blame myself and everyone for this. It's a horrible ride to be in right now, but it will pass. 

 

Just remember you are a good person, WD can make us think otherwise. 

 

Keep hanging in there, please Wiggle. It will be worth it when you go back to being yourself. 

[JanCarol]

Oh Wiggleit, I just took the time to get to know you through your thread.  Hi! 

 

It makes me red faced and angry what was done to you, here "try this" - making you a big lab rat.  Maybe they want to dissect you at the end of the experiment?  They've shown more caring and consideration to their lab rats.  All this as a way to say:  I'm sorry for what you are going through.  I'm a little extra angry, too, because I was put on tricyclics a lot, too, as I refused SSRI's - there but for the grace of God, go I.  It could have been me wiggling and thrashing from those d#m^ drugs.

 

You are still in early stages of your WD.  It's soooooo too early to tell what you will be in a year, 3 years time.  I know that doesn't help you right NOW, but maybe if you get a peek at the horizon, you can be patient with yourself and your horrible symptoms.

 

I will tell you this though:  looking for recovery stories is not a strategy for finding others who have healed.  Alto has begged the people she knows - who have healed - to write a recovery story here.  But they are too busy living their lives to come here and write about it.  People who are fine, who are okay, who "get away with it," tend to fly away and live their lives in places other than SA and the internet.

 

I'll be realistic too, I'm not a good "coddler" (you have lots of those here on your thread, such warm support here!).  Yes, some people still have **some** symptoms 3 years, 5 years on.  But nearly every one I've talked to - wouldn't trade those symptoms and go back on the drugs.  They appreciate the clarity, the freedom of mind, the brightness that they have achieved in their long road from withdrawal.  They feel they have come back to themselves, and wouldn't trade it for the world, in spite of continuing symptoms.  And many believe that those, too, will fade over time.

 

To be fair, I don't envy you your wiggle disorder (I would almost call it a seizure disorder).  I'm glad you have your parents to help you function.  But to be fair, I don't envy people their neuro-fear, neuro-anger, anxiety, deep suicidal depressions, either.  At least you have a physical thing that people can see.  Those others - people look at them and think they are fine - so they have the denial of their condition, as an additional stress.  I can't say which is worse.  I have sympathy for all of you, and empathy (I have felt it too) for so many of you.

 

I am duly impressed that you have connected your wigglesodes with strong emotions.  That bears watching.  It may be emotion + cortisol = wiggling.  I notice you say you had a more intense day after some Ritz crackers.  That makes me so sad - you finally swallowed some food, and maybe it hurt you?

 

Ritz crackers would have inflammatory properties in the wheat, and in the oils used to make them.  So many foods can trigger us.  When I first came here and heard this, I was like "pooh-pooh, food is food" but I have ended up on a wheat free, dairy free, and a few-other-things free diet to control my symptoms and mood.  I can't say I have had huge changes before choosing to avoid these foods - but I sure am a lot less sick than I was before.

 

And with you able to eat so little, I'm almost afraid to tell you about it.  The thought of restricting even more sounds appalling.     Maybe think of it as finding foods that help you?

 

So maybe pay attention to what you eat, and when.  What you feel, and when.  And see if either or both of those link up to when you wiggle?  Maybe you can find that certain foods, or moods, are more triggering than others - and that will give you some measure of control over your physical trouble.

 

You are a kind and gentle soul - I hear your anger and frustration, and I'm charmed that you have got so many supporters who hear and understand you for who you are.  

[justwanttobefree]

Wow WiggleIt. I don't even know what to say. You have my deepest empathy - you have suffered worse than anyone ever should have to. I have no doubt that you will recover, 4-6 months seems to be the norm on here for the tsunami waves. Keep fighting, you are going to make it!!

[Pugknows]

((((WI)))) I know you are suffering so much, sweetheart. We are the same time off the meds and it's hell on burnt toast right now. Let's keep hanging onto each other one more day at a time.

[WiggleIt]

Cdav, I'm sorry. I feel like I owe you an apology. I think I was not very nice last time I was on my thread. I'm sorry.

 

JanCarol, justwantto, and Pug: thank you.

 

I'm just so scared that these myoclonic jerks and dystonia will last forever. On benzobuddies, it seems like most people with these movement problems clear up in months 4-6 and mine are still so damn severe.

 

Has anyone seen Wildflowers lately? I really need to reach out to so many others.

[WiggleIt]

Severe anxiety attack where the world looks fake, like claymation, along with brain zaps and hysterical fear and running around, unable to sit still plus Big Wiggles and severe myoclonic jerks and dystonia and brain zaps.

 

This attack was as bad as my most severe early attacks. Why is this happening to me again?

 

Also, brain zaps are back. They seem to return with every menstrual cycle.

[LoveandLight]

I'm so sorry it is so awful xx

[Pugknows]

Hang on, WiggleIt. When you're feeling the worst, you're doing the most healing. Love and hugs to you, Pug.

[WiggleIt]

I just saw a new person join on here from tricyclic damage, like me, but I cannot comment on their thread. I have no hope to offer them. None to offer anyone.

 

I was having some windows and my waves had gone from level 10 horror to about level 9. But now I am back to level 10 horror.

 

The cognitive progress I had made has also regressed.

[WiggleIt]

I was sub-acute for a blessed muddy window, now acute again. What a waste of a life. I had so much potential.

[Pugknows]

You're potential is still there, WiggleIt. You will get through this. Hugs.

[Pugknows]

Have you done anything differently?

[Pugknows]

I'm really ramped up for no apparent reason.

[Frustrated]

Oh you poor sweet dear.  I am so sorry that you suffer so much.  I will include you in my prayers.  It does feel like such a waste of life to constantly suffer.

[WiggleIt]

I was at the end of my menstrual cycle and I got a massage, so it was two different things. I don't know if one caused the acute wave, or the other, or both.

 

Thank you guys for checking on me.

[ang]

Hi Wigglett.......   hope you are feeling better.    I am into about 5th month of hell....   But gave up everything 9 months ago....   AND I CAN NOW SEE HOPE.

 

I dont know what happened, but I am sure my brain is healing......   I still dont do much, but a difference, somewhere, i can feel it, and now I have hope.

It will happen, every little bit helps.

 

Hugs xxx  All my suffering is emotional, so I guess I am lucky that I dont have all the horrific body things, I went thru those, they stopped.

[WiggleIt]

Ang, thank you. I guess I just get so sad because everybody else who has physical problems, it seems like their physical problems have stopped by around six months, but I am at six months and mine are still BAD.

 

Plus, there is a lot of other stuff that worries me, too. Things that I don't even want to describe because they are so scary. Things that are nothing at all like the person I was before medication.

[Frustrated]

I am nine and a half months out and still have physical symptoms. You are not alone there.

[luv2knit]

Wiggle, I still have constant akathisia at 9 months out. In fact, it has been worse than ever the last week or so. Praying you get some relief soon.

[Altostrata]

It was probably your hormonal cycle that triggered the wave, WiggleIt, nothing you've done.

 

Hang in there, we're all rooting for you.

[WiggleIt]

Thanks, guys, Alto and everyone. I try not to be such a sad sack, but the physical and neurological handicaps are just so much. I'm so disabled.

 

I really love the person I was before being rendered disabled by meds.

 

I have so many wonderful memories of who I was, things I did. I worked my whole life to become someone I liked, and I really did like myself. I won't know how to remake myself, how to love my life if I have to accept myoclonus and dystonia in it, if I have to give up everything that made me me. Because right now, 95% of the person I worked to become is gone.

[WiggleIt]

I just don't know who I'm going to be if I can never leave my house again because of myoclonus and dystonia and light sensitivity and sound sensitivity. Who will I be locked in my room the rest of my life?

[bluebalu86]

Hi WiggleIt

 

I'm struggling greatly at the moment too, I also have tics, twitching and muscle jerks, and would just like to say that I'm sending lots of hugs and kisses from Bulgaria your way and I believe you will recover and be the old you that you invested in and like so much, if you only hold on and get through this hell of a crisis. It's a nightmare, it really is, but you're not alone in this hard journey. I am with you and my prayers go out to you. Try to take it one day at a time and believe things will get easier and better in time. The brain heals, the body heals. God created us that way.  

[WiggleIt]

Bluebalu... I'm so sorry you are having these problems, too. You sound like you have an incredible soul and I thank you for your kindness.

[WiggleIt]

I am not doing much commenting on anybody's threads these days, but I am absolutely following and reading what you, my new crew of friends, are all enduring. I don't have a lot of advice, I don't have any advice actually, since I don't know what I'm doing either. But I am following your stories.

 

Currently, i'm wondering if I ever again in my life will be able to attend a live concert or a night. I loved dancing and I love concerts. I'm so light-sensitive and sound sensitive now that I cannot imagine being in the bright, flashing, noisy settings that used to enjoy.

 

I guess I'm getting ahead of myself with that, though. First on the agenda is being able to walk more than 20 feet without jerking or having my body contort into a weird position.

 

I've started seeing a physical therapist who works with narrow rehabilitation. That means it's the type of place who work with people with strokes and Parkinson's. Basically, my theory is if the medications retrained our bodies to have on natural movements, maybe we can gently retrain them to have normal movements. People with structural brain damage from the stroke have learned to read build new pathways, so maybe our pathways can be rewired. After all, we do not have structural damage. But the medications have depleted us of normal supply of things our bodies had before meds and have possibly rewired motor control functions in our brains. Hopefully, me and my neuro physical therapist can rewire that stuff back to normal (my "normal," since everybody's normal is different). Manner of physical therapist is fantastic. She is not sure how the exposure to medications may affect our work together, but she has helped people at rehabilitate who has presented with these types of symptoms. We just don't know if organic presentation of these movements symptoms is easier to rehabilitate them chemically induced presentation. She is smart and kind and encouraging, and she is also educating herself about discontinuation syndrome. Can you believe it? A medical care provider who is going to research something she is unfamiliar with, instead of telling me it doesn't exist.

 

At a layperson level, I'm learning about how the medications may change motor function in the basal ganglia, and about GABA in the body, and about the role of serotonin and dopamine in muscle movement and basal ganglion motor control. My grasp of these concepts is quite general and abstract, but neuroplasticity research and knowledge in how incredibly healthy I was born are things I'm trying to focus on to aid my recovery.

 

Obviously, I'm having a good moment right now. Last time I posted an update I was in terrible, terrible, terrible shape because I had the recurrence of acute problems. I'm trying, though. I'm trying and I'm praying. And I have the best family in the world. Even when I am at my worst, there is no shortage of family members hugging me and telling me that they KNOW I will recover 100%.

[bluebalu86]

Hi WiggleIt

 

That sounds great. Much luck with your new therapist. I believe the body and the brain have the ability to heal naturally with time and I hope that your new therapy helps in that process. I have a lot of twitching and muscle jerking myself and will look into the possibility of physical therapy. Your therapist sounds like a fantastic professional, I'm glad you found her. And I'm glad you have your family. I have my mom and she's great even though she worries a lot about me. She is supporting me and helping me through this. I'm with you and hope for the best for all of us. 

[Frustrated]

Oh Wigglelt I am so glad your family remains behind you. You are lucky there. I hope the therapy does some good for you. I continue to have muscle problems and if you succeed it will give me hope as well. I pray for you and wish you only loveliness and healing.