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.   ;D

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 !!! ;D

Yo maz...thank you for that....definition of a professional: one who knows not but is willing to invest the time, effort, and sacrifice to LEARN!

We often bash the medical profession here...when afterall they are just folks like the rest of us...it's really the knowitalls that deserve the bashing.

About 10-15 yrs ago I had a similar experience with a pharmacist at a major hospital in Seattle.
She was intently interested in a condition she had no experience with so she could better provide service to her patients. I told her everything I could think of.... but realized later I had missed some really good stuff. From then on I determned to be ready "next time"...alas,it hasn't happened yet...but I'm ready..

Thanks for advocating  for the family......

Best

Jon

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.

Good doctors are like buses. You wait for ever for one to come along, and then three come at once.

jon - I'm seeing the same doctor for a follow up in 2 weeks time. I'm going to tell him he can give his other patient my name and number if she wants to talk. Don't know if he's allowed to do that, but if it happens I will bring her here.

Brian - No more cycles ? You never know, you may be right. I do hope so. Then she'll be apples.

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..  :-*

This doc I'm talking about is not a neuro, just a family GP, and THEY are the ones who often cause the biggest delay in getting help. Obviously they are every ones first port of call and will mess around for months, or even years with pain killers, anti epileptics, etc. So sure of themselves that they will find a cure eventually. They just don't realise - they just click off their screen when you've gone and go on to the next patient without another thought. But for us that delay is agonising, until eventually they give up and send you to someone more specialised.  I've lost count of the horrible drugs I took, and saw 4 GPs and 3 so called specialists before I finally got one who knew her stuff. So for an ordinary GP to be wising up could save years of pain for the next CHer that comes his way.

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. 

please go to the medication and treatment section and look for 123 pain free days and read it"s helped a lot of people.

Mark

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

The condition was originally named Horton's Cephalalgia after Dr. B.T Horton. His original paper describes the severity of the headaches as being able to take normal men and force them to attempt or complete suicide. From Horton's 1939 paper on cluster headache.

In some respect I feel lucky my hometown was Oxford
when the beast first raised his ugly head back in 1969,
and was diagnosed with this awful disease in 3 days at
the Radcliffe Infirmary.

Hoppy

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 am now educating my GP although he did call my CH diagnosis right away.  He just doesn't understand effective treatments.  He was surprised to hear that O2 could cut a CH short.

It was interesting to have my new neurologist say, after she read my headache diary, that she thought it was a travesty that GPs are not trained with regards to CH.

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"   ;D
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