Hello everyone,
I am a 15 year old female who has had motor tics since I was 2. I started having chronic motor and vocal tics in grade 5 and have been diagnosed with Tourette's Syndrome this year. In this 6 (ish) months, I have had "flare ups" or episodes that look a lot like dystonic symptoms. They are by no means chronic, as I only get them with very high stress/anxiety levels. They happen in my hands, back, arms, and sometimes legs and face. Most of the time they last a few days where it will be locked in a vey uncomfortable and unnatural position or it will go away after my massage therapist spends some time on it! I also had a(n) episode or reaction this winter, I have no idea what it was, niether does any doctor I see including specialists, er doctors, psychiatrists, and neurologists. I was convulsing and rock ard everywhere and not respondng. My tongue was stuck out and my eyes were rolled up and I remember NONE of this. I am wondering, does this sound like anything anyone has ever experienced before? I've had tests done to confirm it is not a type of seizure. Is it maybe just severe Tourette's? Dystonic tics? Dystonia? Something else I'm unaware of? Any opinions would be great! Also, I'm on a very low dose of Clomipramine for anxiety/depression but it doesn't seem to have an effect on it.
Thanks!
Emma

Hi Emma and welcome

What you describe does not sound like typical TS tics to me, even complex ones? but as the spectrum of symptoms in the syndrome can be so individually varied, that it is always a possibility.

What other testing has been done apart from the seizure checks?

I agree with Chemar... that this sounds very extreme.

There are dystonias, but a neurologist would have to evaluate that.

There are also electrolyte imbalances, that can cause tetany.

This happens where there is too much or too little of calcium and or magnesium. But ER doctors would have found that, I would think.

Do you have photos of these times, you can show new doctors?

I'd go to a endocrinologist and get evaluated for parathyroid disorders. These are pretty complicated, and not routine with most doctors.

Some people do react to antidepressants with exaggerated responses in the neck, mouth and tongue area that resemble tics. (they resemble tardive dyskinesia normally caused by certain drugs). I'd discuss this with your doctor, and be very careful of drugs that involve neurotransmitters in the brain.

Have you used any other drugs? Reglan, or any antinausea drugs (Compazine or Phenergan), or drugs like Abilify, or Risperdal, Seroquel, Haldol, etc?

This sounds rather extreme to me, and you should be able to find a specialist to address it.

Dear Emma.

Sorry you're dealing with all of this without answers.

Are you seeing a Neurologist? Who's prescribed the Clomipramine? How long have you been on it and have these sustained movements begun since you started it?

I have heard of people having prolonged tics, dystonic tics, but not for days as you describe. Tics, typically are less prolonged.

This is old, but describes dystonic tics in patients with TS.

PubMed[Dystonic Tics in patients with Tourette's syndrome

Mov Disord. 1991;6(3):248-52.


Have you looked into the Dyskinesias?
http://www.wemove.org/pdys/pdys.html

http://www.wemove.org/pdys/pdys_cc.html

http://www.wemove.org/pdys/pdys_dia.html

Edited to add:

Emma, who were you with when this happened and described this back to you? Did it only happen only once? Never again?