Hi my brother has been a chronic sufferer for about 10 years now, and is awaiting surgery. About a year ago he started getting v severe tremors in his arms, usually one arm at a time although it cam travel across to other arm at any time. Tremors can last for any time ranging up to an hour and can happen many times a day. Bad enough, but in the last month his head is now being affected too. Doctors are concerned and baffled. has anyone else suffered similar effects ? Please we are desperate.

Thanks for reply. The surgery is to try to prevent clusters by cutting a nerve in the brain at the back of the eye. Only one surgeon i,m told in the uk does this and it is very expensive so funding is  a problem. It does also I believe carry some risk .

I appreciate what you are saying, and will definatley pass on all that is said including the name of the website. Any alternative treatment is worth trying. I am grateful for your advice and opinions.
Like I said I hope he will speak to fellow sufferers himself to get info first hand so to speak.
many thanks

Thank you jerry for your comments, it would indeed be helpful to hear from anyone that has had surgery.
It is very hard to describe the tremors, if his arm is on a table it literally bangs so hard he has to cushion the noise and if you hold the arm banging you can see it travel across the shoulder and the other arm starts. Any manual work with his arms even lifting can start it off. Crazy eh !
I cant stress enough how helpful it is to hear from others who understand CH. Thankyou  Chris

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Thank you Brew very interesting, and Linda appreciate your comments, my brother has been reading all the messages and like myself finds them beneficial and v interesting.
I am gradually working my way thru topics on this site and its wealth of info. Its a great site thank you all !

Thanks for the clarification.  My tremors are not nearly that severe, and I seriously doubt his are connect to the CH.  Course, I'm not a doc and don't even play one on the internet, so please take our advice with caution.  All we can share is what we experience and have learned over years of dealing with the beast.

I'm glad you clarified the surgery.  The fitting of electrodes to the nerves sounds at least somewhat like ONSI.  There are a couple on here who have had some success with it.  I hpe you will address the question as to ONSI and see what info you will come up with from it.  Also, do a search on previous posts concerning ONSI.

I don't know if the convention in July would be an option to you or not.  If at all possible I think it would be very helpful.  We will be having two of the premier Neurologists who deal with CH speaking, and one of them will be addressing ONSI specifically with a young lady who has had the implant done there to speak about it as well.  Check out OUCH for more information.  I hope it will be a possiblility for you.

Jerry