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.

Sorry. Never a tremor here.

What's the surgery for?

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 .

You will find almost everybody on this website in agreement that surgery for CH is a last resort. That means that you've tried every other treatment first.

Have you checked out clusterbusters.com?

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

Please have him think again about the surgery and do some checking with others who have had it done.  Those that I am familiar with who have had a similar surgery have had very poor results.  Not only did they have the loss of the nerve on the side of the face, but the HA's simply changed sides. 

I am also chronic, so I can definitely understand where he is coming from.  There are a number of other alternatives he should try first.  If surgery is the final route please check out ONSI.  Personally I would find it to be preferrable to cutting the nerve.

As to the tremors, I will periodically get them in my hand on the CH side when being hit hard, but have not had them travel to the other side.  I've noticed no lasting probs with it, just the irritation while it is going  on.

Jerry

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

Sorry I owe you both an appology, surgery is not to cut nerve but to fit electrodes to it and fit a device like a pace maker that hopefully will stimulate the nerve and prevent pains.

Check out this thread:

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Chris, I've been chronic now for 23 years.  I, personally would never have any kind of invasive surgery as I can somewhat control them with pure oxygen, Imitrex once and awhile and ice packs, energy drinks etc.

I am not up on all the different surgical techniques these days, but I have heard that in some cases cutting a nerve on one side or doing anything to the side affected simply makes them switch sides.   This beast is very clever.

I have never had tremors like you described and with the exception of Jerry...have never heard of anyone else who has either.

Please DO have your brother come to this site and talk to us.  We'll be more than happy to give him our collective experiences as well as all the support in the world.  That's what we're here for and that is what makes this site so great.  We ALL know 1st.-hand what he's going through and no long explanations on how this pain feels or how it's affected his life, is necessary.

Linda

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 !

Quote:

my brother has been reading all the messages and like myself finds them beneficial and v interesting.

Good!   welcome,  brother of Crissy(since we don't know your name)   This place is for both of you.  Please ask questions, tell us anything you want to tell us and vent all you want.  If you read here at any length...you will see we all do this to a certain point. 

I've been chronic now for 23 years.  Tell us about you!

          we're listening.


Linda   

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