HI,

  As I read thru some of the posts here I've noticed that many are frustrated or even PISSSED OFF by their Doctor's lack of knowledge about CHs. Believe me I shared the same frustration... At my "Headache Wellness Center" I swear that the Docs were just throwing darts at a board to determine what drug to put me on next.
  After much research here is what I have discovered. About one in every 10,000 people are afflicted with CH. If you calculate that there are 300 million peole in the US. That works out to be only 30,000 people in the US with CHs. ( I assume that other countries have about the same ratio). With only 30,000 people in the country with this condition, There is no University or Pharma. company that is going to spend millions of dollars, to find a cure, with this few potential customers. It's simple economics.... What this means is that if we want help, we must do it ourselves. Forums like this are an excellent start.
    I was at a point where I had 5 Docs ( my GP and 4 specialists). I could tell that my Headache specialists were frustrated as well. The fact is they just dont understand the condition. The meds that they give us are meds for migraine headaches not CH. This is just as close as they can get so that is what they do. In my case, at least, I give them credit for trying.
    Once I had dismissed my specialists, I determined that I must work closely with my GP.  I have been seeing him for 20 years ( I am only 1 year chronic CH) and had a very good relationship with him. I brought him literature on CH and discussed my thoughts. He did the tests that I felt that I needed and prescribed the meds that I felt I needed. For the last 3 or, so months, I have revisited the living. No, I'm not 100% pain free . Maybe 70%-80% but considering where I was 9 months ago I feel I'm on top of the world.
  The moral of this story, If I may, find a Doc that you trust and that trusts you. Educate said Doc and work with him/her. I feel extreemly lucky to have a GP that I have known for so long.
  One tip I would like to pass on, something that I did, is to document everything. I kept a small notebook in which I wrote down everything that I ate and when I ate it , every headache that I had its intensity and the time that it occured and how long it lasted. I did this for over 3 months. This allowed me to recognize patterns and identify foods that triggered attacks.

   I hope that this did not come off as some kind of lecture. I just wanted to pass on my thoughts from my own experience.

Jim

     

Just an excellent compilation of what this board preaches. Educate yourself, then partner with an open minded doctor and plan your attack. We say it a lot but it always bears repeating, sitting down in front of a doctor and saying "fix me" is a recipe for many painful nights and days. Good post.

Guiseppi

Congratulations! You get a gold star.

The secret is doing a lot of the leg work for your doc. Unfortunately, many cannot find such a doc. Which is really quite sad.

Welcome, by the way.

Welcome and that was a great second post I tried to say what you said in one of my post but it didn't come off the same way.  I love my GP and think I can get more results with him than going through him and several differant specailists,  the doctors dont want to change things other doctors started.  IMHO If you can find a good GP and educate yourself I think you can get the best results.    Phil

Excellent post Jim!  I couldn't agree with you more...

Welcome to the nut house...

-Dennis-

 A Neurologist at one of our annual conventions told us that Dr.s get exactly 5 hours of training in headaches in Medical school.

        5 HOURS!!!!!  and that is for ALL headaches.  Migraine, tension, sinus and cluster.

The problem as Brew stated is that so many of them...even when we bring information to them about Cluster headaces, are NOT even willing to learn, will not listen and so many won't give out scripts for oxygen, forcing so many to go the welders 02 route.  They have no problem with loading us up with narcotics though.

I was lucky as you are to have a GP that I have known for years and who has said to me..."linda, you klnow more about CH than I do and I will defer to your knowledge in what you want to try.  You and I are in the minority.

All that you have said above is something we have all known and preached about for years now.  Please consider joining OUCH.  It is through numbers and people like all of us..who will make the break-throughs needed.

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Oh, yes...and welcome.  ;D  Linda Howell

Jim,
Thank you, this gives better understanding to why we have no Dx code and many of the misconceptions in the Medical field and the insurance idiots. We're all Migraine people to them unless we can teach them otherwise. Some you just cannot, I've found.

I knew we were rare but when I look at that number it really sinks in. It does seem that more non CH people have heard of it but to them it is still a headache.               Thanks again,    Don

Just one time I'd like to win the lottery with the same odds. I think we all deserve it.

Jim