First time here...I'm 51 and have had ch for 20+ years.  Suffered with some super dumb doctors(Oxymoron?) but finally went to a headache Doctor and it was awesome. 

I am in an episode now that has lasted 5 weeks...that is quite long for me.  Just got O2 delivered this morning and have used it 4 times today for 20 minutes a pop.  I have it set at 15 lpm and at this rate I could use an entire "H" bottle in a week.  I hope they will subside.  But...does this sound excessive? 

I have read all over this site today...incredible but also great to hear how similar ath the cluster folks experiences are.

Wish I could get on O2. No Dr's want to precribe to me. I'am have insurance with a clinc. Soon this should change and I will be on Medicare. And receive real treatment. I have seen so many Dr's that just don't care. Wish I could be on a talk show to tell how serious this is. ( cluster haedaches) most DR's think I need to see a crazy Doc. Being a self pasy I can't afford this goiung to doctor to doctor that understands the importanance in this.

Tamara wrote on Aug 31^st, 2009 at 11:01pm:

Have you heard about using welder's oxygen? It's the same stuff, and a much cheaper alternative for those with crappy or no insurance. Requires a little work on your part (going to a welder's supply house, getting a regulator and couplings that render it useful for us, etc.).

I don't use it, but hopefully someone will come along who can point you in the right direction.

  Okay . . . for those who have docs not familiar with CH or treatment of same.

  Copy the "Cluster traits" (link on left), "Cluster Quiz" (also on left), "the kip scale" (left also) . . . take a yellow marker and mark all the traits that match your symptoms.

  If you don't already have one . . . start a headache journal today, list the time, duration, pain level (use the Kip scale) and take this with you to your next doc appt.

  Copy the 02 info (on the left), plus the plainboard site and others that list symptoms, treatments for CH.

  And take all of this with you when you see your doc.  That's what I did after a week of my wife finding this site and the day after what still ranks as the worst attack I've ever had.  He wanted to up the dosage of Atenelol (sp?), which at that time wasn't even listed in the medical info as a treatment for CH.  NO!  "This is what I have and THIS is what I want (Verapamil, 02, Imitrex).  I was loud, somewhat aggressive (to the point that the nurse had me sign a paper she had written up promising not to be loud or hostile in the future the next time I had and appt . . . her idea, not the docs).  He relented on the Verapamil and 02 (4 lpm with nasal canulae . . . didn't care . . had the script, then got a higher flowrate regulator and non-rebreather mask).   Within 3 weeks, had my first PF day in over a year.  Due to some heart issues he (correctly) denied the Trex, and future test did show I has some artery blockage and high cholesterol . . . so Trex is out for me.

  Several months later he left for another practice and on my last visit with him, he gave back all those copies of info and said, "guess we'll have to blame it (success) on the Verapamil"

  Point being, if you don't have a doc that understands CH, you're going to have to educate him/her to help them help you or find another doc.

  If that doesn't work, I would consider triggering an attack in his office (slam down a beer or two a few minutes before your walk in)  At the very least, you won't be sitting in the waiting room for very long . . . if they're going to refuse to treat your pain, they should at least be forced to observe it and realize it's not "just" a headache.

  Radical? Maybe.  But they're not the ones living in fear of the next attack.

    Be Safe,

      PFDANs

        Richard