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Head/neck jerking Tourettes, Seizures, or Dystonia?
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Head/neck jerking Tourettes, Seizures, or Dystonia?

My 16 year old daughter has a history of epilepsy - partial complex and petit mal seizures, plus a brain injury at birth and one at 8 years old.  Her last 3 EEG's have been normal. She currently takes Lamictal 50 mgs BID and Zonegram 100 mg for seizures, plus Focalin for ADD.  Two months ago she messed up her meds and accidently took 25 migs Lamictal BID instead of 50.  About 3 weeks later she started what looked like tics at first - neck and head jerking - and they worsened.  Then they began to look more like partial seizures - since they became more forceful, rapid, and were always to the right side.  When we discovered the medication error, we immediately put her back on Lamictal 50 mg BID, and added Clonipin, .5 or 1.0 mg to help with the head jerking.  It has helped only a little, but at least she isn't being woken up from sleep with the jerking anymore
However, the head jerking during daytime continues, and she now has a lot of neck pain, and now it is looking more like dystonia. It gets worse with fatigue and stress.  She can't stop it, but holding her neck or head stops the movement, but not the twitching of the muscles.  We can't figure this out, and the neurologist hasn't yet seen here because he is triple-booked for weeks to come and can't fit her in any sooner. (we live in a small town)  She is having increased emotional lability because of this. She is also slightly obsessive compulsive and tends towards depression, but not severe.
Does this sound more like Tourettes, Seizures, or Dystonia to you?

Thank you,

Barbara
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Avatar m tn
Hi

I've had cervical dystonia permanently since august 2006 (onsets which subsided in 1997 and 2002) with jerking movements in the neck, pain and tension. The first doctor I saw mentioned Tourettes as stress and fatigue worsened the situation, but he (subject to y contradicting oppinion also) refered me to e neurologist. It took 6 months to get a diagnose by a german senior doctor. I now receive Botox injections every 3 month and take some Diazepam (Valium, Stesolid) which help me a lot. Your daughters symptoms sounds a lot like mine, and I would mention dystonia if the neurologist doesnt bring it up.

As for epilepsy in combination with dystonia I don't know, getting the right medication for both is complex and a matter for neurologists. My late father had epilepsy grand mal but didn't have dystonia, and neither epilepsy nor dystonia is genetically transferred.

May God bless you, and I pray that He will guide you to a good neurologist who might find a way.. there is certainly hope, and by now great support groups also for dystonia.
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