Hi all,
The reason I'm here is because I got to know someone. A someone who suffers from chronic cluster headache. That 'someone' turned out to be ehrm, kind of special.. so here I am, reading everything I can to inform myself. I am starting to get the picture just yet... I have witnessed several attacks, the worst one a few days ago. The full monty: screaming of how he can't handle it anymore, banging his head against the wall, slapping his head very hard, crying.  Obviously it hurts like hell to see and hear, but knowing it's only one 100000th of what he's going through... that helps a bit.
I would like to know where I can find a forum/thread that is specifically for/about supporters. Any suggestions would be very welcome. Ofcourse I want to help as well as I can, weather it's actual 'help'  or just being there, waiting for the thing to go away and then just hug him.
We already discussed this a bit, I guess we'll have to discover what works out best for both of us..
With every word I read about this subject, my respect and awe for you guys grows. I can't possibly imagine what it feels like to go through this hell, every bloody single day (episodic is bad enough, let alone chronic...). Hell yeah, the word respect does not even cover that!!
I hope to hear from you guys! Thanks  :)

-edit- oh, so there's a big supporter depeartment on this forum, just saw it. Oopsie.

Zoey,

Welcome to CH.com. Supporters are very important to us and we can't thank you enough for being there.

It is wonderfully selfless of you to inform yourself about this condition and it could be the best thing you can do for your friend.

To help us understand the situation, it will help if you can fill in a few details about the following:

How long has he been suffering CH?
Has he had a formal diagnosis from a qualified headache specialist?
What MEDS is he taking, both abortives and preventatives?
Does he use Oxygen?
Where in the world do you live?

Please talk to your friend and agree that he is happy to give us this information.

There is a whole world of support, experience, information and compassion here, so you've cone to the right place.

Looking forward to hearing from you and again, thank you for supporting.

Peter.

Zoeyi, we love you, and I promise that as a supporter you are very welcome here. Don't know how you do it because I wouldn't last moments in your shoes.

A firm diagnosis of which sort of headache is so very important, and we can help you heaps, but to help him the most you need to sit quietly with him when he's headache-free, hold hands, and ask him how best you can help.

I beg you not be offended if he says you mustn't come near him during an attack for many of us are like that (Touch me, I keel you!!!) while others appreciate having someone close.

Checking his medication would be good, we sometimes get a little fuzzy-headed, or simply running interference for him so he's bothered the least when things get crook. Keep up his ice packs (frozen peas are our friends) make sure the coffee is ready and simply never ever judge him because he's truly wrestling a monster.

I also thank you for supporting one of our ClusterMates because we'd be lost without people like you.

Thanks for your answers, i really appreciate that. I haven't had a chance to ask him yet if he's ok with sharing his information here.
But in the meantime there's lots of valuable information to be found here, which I am reading like crazy. More later on :)

It's important that we know: who told him that he has Cluster headache? If he has not seen a doc skilled with headache, the best help you can give now is to get him moving to find a good doc.

Cluster is not a simple disorder and there are many serious problems which appear to be Cluster but which are not headache.

If he is avoidig seeing a doc your best help is to encourage him to understand that he can't treat himself.
=======
LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
=====================================================================
WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.

=================================

Hi Zoeyi and welcome

Bob, Brian and Peter have already given good advice on the CH side of things.

What matters most is you being there for him in the way he wants you to be. We're all unique in our own ways with some just wanting to be alone to others wanting their supporter there and doing things.

The best time to discuss this is when he hasn't got a CH.

Do read up all you can about CH as knowledge is very powerful in dealing with it.

And do remember to look after yourself too, that is very, very important.

Thanks for your answers. He got diagnosed last year, but has been suffering the CH's for a long time already. Recently he's been in touch with a special chronic pain clinic. Doctors, psychiatrists etc. He's done loads of research on the topic already. At least they take him serious now, that must be a huge relief.
As for myself.. I'm new to all this. I have a hard time understanding what it all means exactly. The attacks are one thing, the mental part is a whole different story.
I am not completely sure yet how to handle the fact that this thing has such a severe impact on, well.... everything. It's not so much the attacks I find hard to deal with. He has no future vision for himself, because he can't look much further than half a day max. Let alone he can envision a future for two.
I certainly don't want to push anything. I can imagine it's quit something to give in to this thing called love, when you want to die at least five times a day...:/

Zoey,

Read this and get him to read it too. In particular the second part.

It's helping over 80% of us who are taking it. I mean life changing help.

Then come back with questions:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Peter.