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Severe Head Jerking


Chrissy
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Hi. This is Chrissy's mom, Debby. We had a couple of very scary days! All of a sudden, our of nowhere, Chrissy started having head jerking movements accompanied by a loud sniff, sniff sound. If you ever saw the movie on Lifetime about the boy with Tourette Syndrome who went on to become a school teacher, it looked exactly like that (except instead of his vocal outbursts, hers was a sniffing sound). It kept getting worse and more frequent that we had to take her to the emergency room. We were actually out of town at the time. Ever since Chrissy had her pit surgery in April 2010, she hardly ever sleeps. She will go days without sleeping. I read the various posts about tremors and was wondering if that is the same thing as what I am describing. She has never had this happen before. Any feed back would be very much appreciated! She tried taking one of my husbands lunesta tablets one night and it did not help her sleep at all. I am sure going days without sleep is not good! Thank you for your time and comments! Debby

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Debby-

What did the ER doc dx it as?

I have what the specialists term an unusual presentation of cervical dystonia (aka spasmodic torticullis). I have had one round of botox so far. As long as I stay reclined or in bed a good portion of the day, it is not too bad. If I am upright too long, the spasms will definitely hit and lack of sleep is definitely a contributor. When I was working full time and going to grad school my head would bounce around incredibly during night classes. I really am not sure and don't think the docs are either as to what is going on but I hate being a ceiling inspector.

I hope your daughter's issue was an isolated event. I agree that addressing her sleep problem is a good idea.

noreen

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Hi Debby,

I'm sorry to say that right now I have the same problem unfortunately. Mine started with blepharospasm in my left eye and continued downwards. I have multiple different types now including the head jerking. I don't make any sound but it's quite annoying. I have one where my head locks back and I cannot speak. That one is a bit scary and makes my son very nervous. I'm trying to get into the Dystonia specialist but they are not being cooperative. I also have tremors but this is so different and just started recently. I was diagnosed with mild sleep apnea in 2004 and they are having me go back to the sleep clinic. Just another symptom to add to the list. Mine is definitely worse when I use my arms a lot throughout the day. When I go to rest it starts and is worst when I am sitting and upright. Good luck!

Elizabeth

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