Like many others, I had a difficult time finding a doctor who had experience with CH, and a doctor who knew squat about O2 therapy.  Fortunately, I was prepared this time.  So I take my prescription to the med supply place, and one rather matter-of-factly phones back to ask the tech to put together the stuff for cluster headaches.  Then it hit me - there are dozens of doctors in this town, most of which never have or never will meet any of us.  But there is only one oxygen store in town!  They will probably see any of us.  These guys probably know who the docs are who prescribe O2, the docs with some experience.  They have a lot of turnover, but there are some old-timers. 

So, are these folks allowed to tell us names of doctors familiar with the treatment?

You make a good point.  Many of the home oxygen therapy providers really do know what a cluster headache sufferer needs... 

Unfortunately, you'll never know unless you ask...  My suggestion is to ask to speak with the delivery guy.  He's the one that makes the actual contact with the home oxygen therapy user and delivers the needed supplies. 

The well intended gonks in the home oxygen therapy provider office who take your orders or field questions like this are unfortunately sitting under the gun of a government spy from CMS - Centers for Medicare and Medicaid Services who quotes scripture from the HIPAA Security Rules and coverage policy about things like this...

You guys nailed that one. The tech who delivered my o2 knew more than any of my docs. When he noticed the regulator they sent me was maxed at 8 LPM he went to his truck and got me a 15 LPM regulator. He knew. One thing I noticed this week is how hard o2 is to get the same day. I could find the welding tank if I was in a pinch, and even a regulator, but finding a local place to buy the any kind of mask is next to impossible in this day of web shopping. If we could find sources where a CH sufferer could call to get o2, a mask and a regulator in most major cities, we would be doing a real service. Any ideas where to start?

There were a lot of these stores in Ireland, but it is false advertising:
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But seriously, I think HIPAA prevents them from disclosing info about patients.  But does anything prevent them from discussing doctors?

GrandPotentate wrote on Jun 25^th, 2010 at 8:35am:

But seriously, I think HIPAA prevents them from disclosing info about patients.  But does anything prevent them from discussing doctors?

I'm not thinking that HIPAA prevents them from discussing doctors, but the problem comes if it gets out to the drs. that that o2 company's employees are discussing them... 

I mean, those durable medical supply stores depend on docs to direct patients to them - not always - sometimes it is insurance companies or the patients find the company themselves, but very often it is the doctor that gives the prescription for whatever, be it o2 or TED hose or a walker, and says 'Go to this and this place and get that filled.' 

If it gets back to the docs that this company is directing patients to a different doc, then that doc may just send his patients to a different durable medical supply store and the company loses...

Certainly, you can ask though.  Individual employees may not know (or care) about general company policy about discussing docs...   ;)