Soooo...got a definite diagnosis of CH. (OH JOY!!!) Have seen the Neurologist 3 times since...visit one he got to witness a headache in person. :o That'll teach them to listen to me when I say NO 10:00 APPOINTMENT!!! GRRR!! Visit 2 I got the injection in the neck. No improvement. Visit 3 and injection try again. (Along with another headache in his exam room-you'd think they'd learn! For "brain" Docs they aren't all that swift!!) So Thurs I am not leaving without a rx for Oxygen. I told hubby that if he tries to dismiss me I am grabbing him by the "jewels" and not letting go until he realizes what PAIN is!! (and Yes, I am serious)
I have soooo much info to take him with a little sticky note on top that says RX OXYGEN or else I'm camping in your waiting room until you do!!  >:(

USMCWIFE,
If you get no results from the "jewel" squeeze I'd suggest going the welding Oxygen approach.  There's a good number of members on this board who've gone that route from all the frustration of their doc or insurance not wanting to "play ball"  ;D

I went the prescription O2 route this past cycle, and after my experience I decided to get  myself set up with my own mask, and regulator.  So, all I'll need next cycle (which I hope never comes) is to buy or lease a tank.

If you do go that route, I've been told not to tell the welding supply company what you plan on doing with it, instead say you want to learn to weld. My wife is a glass bead maker and she uses O2 like mad, so I guess you could tell them you are learning lampworking or bead making.

As far as any questions on the purity of the Oxygen, the rep. from Praxair told me that it's the same Oxygen they use to fill the tanks used in the hospitals; and that they pull a vacuum on the tank before each refill.

Hopes this helps!
-Gary

Don't get arrested for assault.

How did they treat your attack in the office?  lance

URAH!!!

Now you know...  Having a diagnosis of CH is actually half the battle.  Learning how to control the beast is the other half.  Check your PM inbox.

Please keep us posted.

Semper Fi

V/R, Batch

Wow... I tell you what.... I never realized how difficult a time some people have with just getting a diagnosis...  When I started looking for help I got the diagnosis and treatment right away (minus the o2).  (Really wish I would have gotten that too but hey.)  I am so sorry you have had so much trouble.  I can not imagine going through life  knowing what I have, suffering with it and having anyone with the power to help neglecting to.

Stay Strong.

like Batch said it's half the battle.  Unfortunately the other half is much tougher for some to fight.  I look at it this way. No one knows but us what its like to live with this.. I pity every one else who knows nothing of the pain of CH because they don't know how to enjoy the sweetness of a truly healthy active pain free life.
I think some of the most optimistic, helping and genuinely caring people you will need in this battle you will find right here. 

Sean