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Distinguished member
Oct 17, 2008
Hi folks. My first post here after lurking for a few days.

I'll try to be brief because I have no diagnosis and a specialist appointment in November.

First, the most bothersome sypmtom of (whatever is happening) over the past few months has been a tightening or spasming of my head muscles, like a rope is tied to one of muscles and someone is pulling on it. This can also happens in other parts of my head/face and neck, etc. I have an occasional throat or tongue twitch. When it is particuarly bad it can move into my pecs, etc. It is worse farther into the day as I become tired, and it more noticeable sitting still than when active. So the question, has anyone experienced this and has anything been effective at controlling it? It is so distracting.

Second, I have had twitches and minor cramps in the rest of my body for several years. Recently they have become worse, particularly the day after strenuous activity. At times my whole leg will begin twitching, then my foot will draw down until stiff and many leg muscles will contract. Or my shoulder will begin the same process, and pretty soon my bicep will begin contracting and the arm will draw slightly. The strange thing is they start involuntarily but I can voluntarily stop it by just relaxing the affected part. AND they won't do it while I'm exercising. Are these cramps or spasms, and what has helped?

I'm trying my best not to diagnose myself, but along with some other symptoms I won't go into I am obviously concerned.

I am sure someone can shed some light on these symptoms. Thanks so much.

p.s. I am taking 1.5 350mg Soma's per day and 1.5 .5mg Klonopin per day. They have helped with the above symptoms for actually about 3 years, but now only briefly (2-3 hours).
Hi ktmj,
It was very interesting to read your description of the feeling in your head. I posted a previous thread about my husband where he described it as something lifting up his brain and then suddenly dropping it back down. They sound very similar. He mentioned this to the ALS clinic via phone, and his doctor upped his Elavil. The nurse said Doc talked about him having another brain MRI, but have not heard back from them yet. Be sure to tell the doctor about this at your November appt.
Thanks strikeout for your response,

That's not exactly the same feeling for me but it is very distracting because it goes almost all day, especially afternoon on. My spasm, or cramp, can be in almost any head muscle. Sometimes my nose feels like it is being pulled straight down or to the side.

Has anyone else experienced head/face/jaw spasms or cramps?
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