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

[mammaP]

I'm glad that you have found your miracle Wiggleit.   You are going to get better 

[Frustrated]

What you believe makes a HUGE difference to the brain.  That is why placebos work in alot of cases.  If you truly believe that you are healing then you are.  Good for you.  I need to follow your advice as hard as it sometimes is.

[Altostrata]

Acceptance can help you move forward instead of adding fear in a spiral of suffering.
 
From my very brief reading, I've found osteopathic manual manipulation may be helpful in dystonia. For example, see http://digital.turn-page.com/i/164739-september-2013/29Osteopathic training is based in understanding bone structure, musculature, and nerves.
 
Most osteopaths (D.O.s) practice medicine like M.D.s, but some still do the fundamental manual manipulation. In my experience, manual manipulation is very gentle. They hardly touch you. I found it quite remarkable.
 
Some D.O.s go into neurology, orthopedics, and physical therapy. Perhaps you can find such a person near you, a D.O. who practices manual manipulation, this could be helpful, one muscle group at a time.
 
There is a osteopathy college in Parker, CO http://www.rvu.edu/aboutCOM.asp
 
D.O. professional organization Colorado Springs Osteopathic Foundation

 

Find a DO - American Osteopathic Association

 

D.O.s in Colorado http://cf-prd10.osteopathic.org/finddo/dir_search_results.cfm?check_all=on&tFirstName=&tLastName=&tCity=&tState=CO&tZip=(click on the Specialty heading to sort, look for neuromuscular medicine, osteo manipulative therapy etc.)

[WiggleIt]

I have been thrown back into acute and just had a full-blown episode of writhing and contortions on the floor that look like Grand Mal seizures.

Thank you, Alto for the links.  Since it is my brain and basal ganglia that are sending out these horrible signals, how will it help to have the manual manipulation?  Will it be like neuro retraining?  

[WiggleIt]

My dad pulled together some contacts based on osteopathy and neuromuscular retraining. Thanks for the lead.

[WiggleIt]

What is wrong with me? I have facial tics, tongue twitches, paralyzed throat muscles, whole body dystonia, akathisia, and things that look like Grand Mal seizures. Body zaps, brain zaps.

 

Please, Lord, help me.

 

I have these horrible rushes where I feel like I'm high, very high on something VERY bad.

 

My mouth has scrunched and twisted, and my tongue... I can't even tell you all what is happening to my tongue.

 

PLEASE does ANYBODY recover from a place THIS BAD after doing a dual CT? It wasn't my fault. I just didn't find help about microtapers on time and now I CAN'T go back on anything because it will just make it worse.

 

Please, Lord, I never would have hurt myself this way on purpose. Please help me, Lord. Please help me beat every bad odd out there that says I'm stuck this way forever with dystonia. Please help me NOT end up like the women in my pelvic pain groups who report Dystonia and myoclonus two, three, five years off meds.

 

Dear Lord... You have the power to make miracles. You can do anything, God.

[Frustrated]

PLEASE GOD PLACE A HEALING HAND ON WIGGLELT AND PERFORM A MIRACLE TODAY!  Help her to begin healing from this torture and restore her body to a highly functioning state again.  Lord please place healing hands upon all who are on this forum and help all of us to heal and return to highly functioning states of good health so that we can enjoy what time we have left on this Earth.  I vow not to waste any second chance that you see fit to give me, and I am sure Wigglelt will not waste her second chance either.  AMEN!

[Altostrata]

Let the osteopath explain to you how his or her treatment might help.

[Pugknows]

Dear God, please help this child of Yours. She is suffering beyond what she, or any human being, can take. Please step in now, God, and end her pain. Show her Your light, Lord. Let her know she will heal soon. Send her messages. She needs to hear Your voice in the darkness. This is all too much for her to bear dear God. Please help this child.

[bluebalu86]

Thinking about you WiggleIt. Don't abandon hope. I'm also praying for relief and healing for you. Wish you only the best. 

[Flowers]

Sending healing thoughts Wigglett.

 

I so hope you feel better soon.

 

Love from Flowers xxx

[WiggleIt]

Horrible insomnia. Searing pain in head.

 

Please, God, take me. I've talked to the dystima boards. This is for life along with all the details about all my neuro symptoms.

 

I haven't slept.

 

I wish I were dead.

[WiggleIt]

Even my face is having jerks that wake me out of sleep.

 

This isn't withdrawal. This is permanent neuro damage and I bet I was genetically predisposed but my parents won't pay for the genetic testing. There is research about dystonia and genetic predisposition for which people might be most vulnerable. Anyway, it might not even matter because Healy says these meds are known to alter gene expression, so even if I had been born with healthy genes, they've been destroyed.

 

Please, Lord, if you are not going to heal me, then take me.

 

I cannot live like this. I cannot learn to live well like this.

[Skylarblue75]

WiggleIt, you are in my thoughts and prayers. Please Lord place your healing hands on this women and restore her!

[WiggleIt]

Thank you all for being so nice to me.

 

I cannot tell you how bad it is. Still not found any tardive Dystonia remission stories.

 

It's as bad right now as it was in beginning, plus addition of akathisia in fingers and feet. Not the pacing kind you all describe, but where my fingers just keep wiggling.

 

Sleeping is terrifying. Surges of electricity and myoclonic jerks go through my body and I am unable to fall asleep. Maybe I would not mind the insomnia if not for the electrical pain and jerks that come with it.

[WiggleIt]

Episodes last night and tonight of fish-like flopping all over the place. I refer to them as waking seizures. Sometimes they come with piercing head pain. Terrifying. Semi-catatonic episodes returned where only able to say mmm or speak in short, childish sentences.

[Flowers]

All this must be dreadful for you Wigglett.

 

Don't know what to say except I am thinking of you and hope you get a break soon.

 

No one deserves to feel like this.

 

Love from Flowers xxx

[Cdav]

Even my face is having jerks that wake me out of sleep.

 

This isn't withdrawal. This is permanent neuro damage and I bet I was genetically predisposed but my parents won't pay for the genetic testing. There is research about dystonia and genetic predisposition for which people might be most vulnerable. Anyway, it might not even matter because Healy says these meds are known to alter gene expression, so even if I had been born with healthy genes, they've been destroyed.

 

Please, Lord, if you are not going to heal me, then take me.

 

I cannot live like this. I cannot learn to live well like this.

 

I feel so much for what you're going through Wiggle. I also think that way a lot, if I'm not going to heal, best thing would be for God to let us rest in peace. But I'm still hopeful. I miss who I used to be. This past week I've had suicidal akathisia and depression and myoclonic jerks all over, mouth, legs, arms, back, spinal chord. I haven't been able to come into the forums too much out of fear of reading how people are still suffering. I can't even imagine the severity of your symptoms and I think God will somehow make it up to you for having to go through this nightmare. 

 

 

Praying.

 

Sending you a big hug. 

[WiggleIt]

Developed painful PGAD. The orgasm nearly killed me from overstimulation of whole entire nervous system.

 

Insomnia.

 

Cortisol rushes when trying to sleep unbearable. UNBEARABLE. Whole body vibrating constantly.

 

Bladder pain plus PGAD plus inability to urinate. I think the PGAD makes it hard to pee. This is NOTHING like the original pelvic pain for which I was put on the tricyclics and I know that what I feel now is BECAUSE of the tricyclics, since others on this site have described the same, and they do NOT have a history of pelvic/bladder pain.

 

I wish I had continued to fight against the doctors about using tricyclics. I refused them for 1.5 years until the doctors convinced me to take them. By the time I found out I could have pelvic physical therapy, the TCAs had ruined the rest of my body and caused worse bladder problems than I ever had originally.

 

I am certain that the cortisol rushes and body heat and tremors that keep me awake are going to kill me.

 

Please, I know that I am dying. I can feel how dangerous my body's reactions are and I think I am going to die from some kind of complication.

 

My own body's nervous system is going to kill me because it doesn't know what to do anymore.

 

It is impossible that this is not going to kill me, especially as I try to fall asleep and all hell breaks loose. Those are the moments I know death is trying to take me.

[WiggleIt]

The PGAD happens as my body is trying to shut down for sleep. As I drift, a terrible, painful rush creeps up from my genitals upward into my body.

 

It is also accompanied by pins and needles spreading upward from my genitals up higher into my body. It is a surge of unwanted arousal plus pins and needles, starting down there and flaring up my chest as I try to sleep. Terrorizing me awake as I try to sleep.

 

I can't even imagine how this sounds to people who are healthy... It must sound like insanity to an outsider because they don't have the context to understand autonomic nervous system and neurological dysregulation/damage in causing the problems we are all describing.

 

How, how can these medications be legal? How can society allow pharma and doctors to treat the mental health population this way? And how can we allow them to spread these chemical disabilities to the chronic pain population, the new victims who are being placed on psych meds?

[WiggleIt]

Alto and cymbaltawithdrawal...

 

Please remind me that I am too unstable to reinstate. I don't even have access to my pills anymore, so I wouldn't be able to anyway, but I please need someone to hold my hand.

[Petunia]

I'm sorry you are having symptoms of PGAD now Wiggle. I'm not Alto or CW, but I don't think anyone would advise reinstatement. Its been over 8 months and no one could predict if it would make you better or worse.

 

Have you been able to get any sleep? Do what you can to stay calm.

 

I've read of several members who developed PGAD temporarily through their withdrawal process, but then it went away. This may not last long.

[WiggleIt]

Petunia, it's hurting my whole body.  The PGAD isn't JUST in the genitals.  It's like being mid-climax all the time with NO release, plus there's actual pain and genital zaps.

[AliG]

 I'm so sorry for your pain, WiggleIt.  Please just know that  you have all of our support, and prayers.

[Martina23]

Wiggelt, when it is the worst (PGAD), you may try lidocain before sleeping, it is like anesteticum on genitals

[AliG]

 Not sure about more , Drugs, Wiggleit. .  Stay calm.

[Cdav]

Wiggle, you're not going to die. I know if feels that way when your nervous system is torturing your body and mind. I've felt I'm going to die many many many times. Fear makes it worse and we imagine that we will die (and also may want to die just to get relief). I'm sorry about the new symptoms you're having. I know you don't want to take any medications, but maybe a micro dose of Lamictal like Alto did may help? 

 

Hugs and Prayers. I know it's terrifying, and it's 24/7 but you're going to survive this. 

[WiggleIt]

I have thought about that, but I don't know how to go about doing that, or even how to find a knowledgeable doctor.  I have a neuro appointment next week.

Also, I'm not sure when Alto started using Lamictal.  Or was it lamotrigine?  Or are they the same thing?

And I'm SO destabilized that I don't even know if it's advisable.  All the doctors already kindled me out of their own ignorance, and I don't want to be the victim of another kindling.

I am just resigned to knowing that I will stay handicapped to a large degree for the rest of my life.  I see how people end up years later from severe cases like mine, and their recoveries are not complete.  Nowhere near it.

[cymbaltawithdrawal5600]

Alto took lamictal (the trade name for lamotrigine) for a very specific reason that does not apply in your case.

 

This is just my opinion but I don't think it is a good idea to ever recommend people on this board take additional drugs trying to 'help' them. Drugs are the problem, not the solution.

 

WI is so destabilized right now her system is not likely to tolerate any sort of drug intervention. The only 'cure' is time and I seem to be the only one thinking that recovery is possible.

[luv2knit]

I also think recovery is possible. Please hang in there, Wiggle! Do not give up!

[bluebalu86]

I also think recovery is possible and I think WiggleIt will recover, even though she's lost hope.

[WiggleIt]

Alto took lamictal (the trade name for lamotrigine) for a very specific reason that does not apply in your case.

 

This is just my opinion but I don't think it is a good idea to ever recommend people on this board take additional drugs trying to 'help' them. Drugs are the problem, not the solution.

 

WI is so destabilized right now her system is not likely to tolerate any sort of drug intervention. The only 'cure' is time and I seem to be the only one thinking that recovery is possible.

You and my parents.  I've just not seen any movement disorder cases as severe as mine recover.  Improve a little, yes.  Recover, no.  And the only other person who I've met as severe as me is now over ten years off meds and not recovered.  Better, yes.  Recovered, no.    

 

I'm so overstimulated that even my own laughter sets off myoclonic jerks in my whole body.  I WANT to do joyful things, but my own body won't let me because the stimulus sends me convulsing.

[cymbaltawithdrawal5600]

I am not going to entertain this kind of thinking anymore. What does Alto say to those who persist in such a vein?

 

I read your links, you did not understand what you were reading. It is impossible for you to contact everyone on the planet who has had this condition so you have no idea who has recovered and who has not.

 

If the Dalai Lama, the Pope, and Elvis each visited you and told you that you would recover you would fight with them too.

 

It will happen in spite of what you think. Thinking of other things (it is called DISTRACTION) until things improve is the way to go but you are free to do this any way you want.

 

This means a lot to me that you start trying to see what we are saying. Don't pull an Iggy here.

 

You are very sick, concentrate on what you can do to recover, not wait to be convinced you will before you even try.

 

Sorry for the tough love.

[Cdav]

Wiggle, I probably shouldn't have adviced lamictal like cymbaltawithdrawal said. It's something that helped Alto a litte bit, so I thought about it. But yes, probably the best thing to do is wait, and yes, stop filling your mind with other people's non-recovery stories. I know you're afraid. I know neurologists don't know anything. I just went with one, he has no clue, he doesn't understand withdrawal at all, most doctor don't understand this or acknowledge it can last so long. I broke into tears when I asked the neuro if he had had a case like mine, he said he hadn't. But there is proof here that many people get damaged by drugs that help other people. I don't know if we are a minority, and that makes it very hard because we might compare ourselves with other people that didn't have any trouble coming off drugs or staying on drugs (some people I know do feel much better and have a better quality of life on the drugs, I used to feel great on Pristiq until withdrawal). 

 

I'm not completely antidrugs, I would be dead now if it wasn't for clonazepam for the extreme akathisia I have chronically. I know there are a lot of drugs and also supplements (ex. Vitamin E) to treat TD. 

 

But it's probably best to just keep hanging in there, one day at a time and do not fill your head with scary stories. I know your own story is scary, but there are people that are far worse. 

 

Don't lose hope, I know it's hard not to. 

[Faithbarelysurviving]

Tardive dyskenisia , dystonia and niacin , manganese

http://orthomolecular.org/library/jom/1976/pdf/1976-v05n01-p004.pdf

 

http://www.alternativementalhealth.com/nutritional-treatment-of-tardive-dyskinesia/

[WiggleIt]

I will look at these links!! Thank you!!!