We have often commented here how little training doctors get with regards to CH. This afternoon I had to see a doctor (not CH related) and he dealt with my problem quickly, then kept me 20 minutes asking about cluster headaches, because he'd seen my notes.

He said he has another lady who has been diagnosed and her neuro had passed the case over to him to treat, and he didn't know what to do for her. He told me he had no training whatsoever in this condition, and thought (like most people do) that it's a headache. He had been looking forward all day to my appointment, so he could get an "expert opinion".

I told him as much as I know, and that I'd learned most of it from this site.  Maybe he'll come along and have a look.  I even told him how to fill in the 02 order form. He wrote everything down and said he would do some research.

He thanked me for the info, and I thanked him for asking. I don't mean to be smug, but I'm feeling quite pleased with myself, that I may have directly helped someone else. Maybe she should have come straight to me in the first place and cut out the middle man.   

I don't think he fully grasped the severity of the pain, but at least he's now aware, and researching. I should go to the doctors more often !!!

Helping a doctor to learn is helping another ClusterHead back to a life worth living.

I just spent an hour with the neurologist I wish I'd met 35 years ago and was able to steer him towards looking into the anti-inflammatory regimen. It might help someone down the track.

He also asked if I'd like any prescriptions and laughed uproariously when I told him no need as I'm not going to have any more cycles.

All in all, time well spent.

I have a great neuro who "asks" questions every time I go in and treats lots of CH patients. He has this site to give to them (and a lot have come here) AND my name and phone to number with my permission to give it to them for support. Several have called.

My old doc (retired now) has been known to call me and ask me about a patient and the "type" of headaches they were having. He admitted it didn't know much about them, but after he described them, I usually told him to refer them to my neuro (which he did).

But like you said - good docs (those who actually WANT to learn something about headaches) are few and far between... we can only hope to find a few of them.. 

I'm a 63 year old male in Oklahoma city.  Episodic Clusters, looking for neuro in metro area familiar with CH.  Used O2 and imitrex to break cycle before.  This cycle is different, used generic sumatriptan 100, caused a lot of rebound heachaches.  Right now I have constant 3 on the kip scale across forehead.

Way to go, Maz! I'm proud of ya!

My Neuro is not a HA specialist, and he knows it, so we get along fine. He is my wife's MS doc, but he was willing to prescribe O2 for me, and let me write the script with his signature. Since then I see him periodically for my CIDP and he always follows up on the CH, asking questions, often bringing in one of his students or residents so they can learn about CH. He told me his job, since he doesn't know about the disease, is to keep me from hurting myself, so he keeps a close eye on my Vit D3 numbers (which are in the "potentially toxic" range to get relief). When I asked him about 5 MeO DALT he turned on his computer and looked it up on the spot and did some research for a few minutes before saying, "Looks good to me. Let me know how it works. I have another patient I may refer to it." Most docs won't even think about recommending something not FDA approved, but he is more concerned with treating his patient.

I'm well known to bash bad doctors, but Dr. McCoyd is indeed one in a million.

Jerry

That's great Maz.  I also had a doctor I educated.  Right after I got hit right in his office with a KIP 8.  After my embarrassment went away, I came to realize it couldn't have happened at a better time.

  I sure wish all doctors were willing to learn as yours and mine were.

I might have already mentioned this, but my doctor was a "unwilling supervisor" of me being on the regime.
She now takes the regime for her migraines !!
I was her first CH patient, so I guess we've both learned along the way (3 years now).   She often comments to me, "I'm looking forward to when I get my second CH patient"   
Ive been in her rooms when Ive been shadowing really bad, she noted that my blood pressure went sky high at the time, So she has a BIG file on me, or maybe more to the fact on CH, maybe because she suffers from migraines, I don't know, BUT I haven't needed to go back to my nuerologist in those 3 years.
Its so important to have that understanding and relationship with either your neuro or doctor, preferably your doctor, as they are much less expensive   

colin