Hi all,
I originally came on board in May, 2006 looking for info into CH. This is a very good site! Since that time, I've been seen by four neuros.
I've had all sorts of preventive meds that were doing me morre harm than good, so I gave up on that as something I wanted to continue on. All I had were the CH (bad enough - huh!?), add to that the side affects of the meds - NOT! That neuro just gave up on me, as did the next for the same reason. Then I went to see a neuro in Century City. She put me on O2, but she prescribed a low flow rate (7-10 lpm). I read that one should use 15, which I tried. This seemed to work very well, but my cycle was rather light (only 5 hits for the whole cycle; I usually get that many in a single day), so I wasn't all that sure. I recently hooked up with the VA, and the neuro prescribed 7-10 lpm (what's with that?). When I got my equipment, I didn't immediately check it in detail (my bad, I know!) Then I got hit up pretty bad. I noticed that my regulator only went to 8 lpm, and that I had not a single non-rebreather mask other than one I saved from the past. When I contacted the supplier, they said that I needed to get in touch with the Pulmonary Dept. After a lot of hassling, I got a consult with them for May 1, 2009, so that I can get set up with the right flow rate/mask - Protocol calls for a mininum flow of 15 lpm for a non-rebreather mask; lower flow rate could cause the reservoir to collapse!
Sorry for the long blah, blah!
COMMENT: I hear a good number of folks saying that they experience kip 10's. I too once made such claims, but I've come to think otherwise. I can only remember having 2 kip 10's in my entire life. The first in 1968, where I punched out windows, broke down the door, took out 5 MP'S (this was on base, and I was into martial arts), got loose from the stretcher while in the ambulance and nearly caused the ambulance to have an accident before getting me to the ER. They treated me with demeral, but it didn't really work. The clusters stopped only to resurface in 2003. Again, I was hit with a kip that year, and I was sent to the ER after backing my boss into a wall and telling her where to go and what tod do once she got there. She nearly died! Don't get me wrong, my hits are bad enough, but then again, I can withstand a lot of pain, so I just wonder. Kip 10's are REALLY BAD, folks!!
OK, that's all!  

YUP!!  Kip 10's are very rare, AND unique!  30 years of clusters, and only a handful of KIP 10's in all those years ...

You know, you don't NEED to get the regulator and mask from your supplier.  Many get the regulators on eBay, and then buy the special mask, designed for cluster headache sufferers, over there,
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behind the tab, on the left side of your screen: CH.com store.  It is WELL worth the money!

Welcome back, but sorry that you have to be!

Chuck

I remember you Ted! Damned sorry the beast found you again. Between E-Bay and the store Chuck mentions you should be able to get all set up. Welcome home it's great to have you back.

joe

Hey Joe, Chuck! Yeah, I'm back, and a bit wiser. You guys are right of course - I could get the mask and regulator elsewhere, but it's a matter of principle - i.e. taking issue with the VA. One Dept. going against the other leaving me to be the ping pong ball. Oh, and they weren't about to inform me! But as Bugs Bunny says "He don't know me too well do he." Well, persistance paid off. I now know why they canceled the neuro's req. and why they want to consult with me. May 1, 2009 is D Day!

Wishing you luck,........that's a beauracracy that moves at a snails pace! Don'y let up on em. ;)

Joe

Welcome home Ted.

I realize the VA can be a PITA at times, but I've found (after years of dealing with them) that a complaint letter with a copy sent to a congressman does a whole lot of good at getting something done in a big hurry. Might try that if foot stomping don't work.  :) Sometimes they just need to have things 'splained to them....

And 10's are no fun, but thank goodness they are rare.

But for goodness sakes - go armed with MORE information about CH than you need and explain it to the neuro you see. Most of them don't handle that many CH cases and don't keep up with the latest treatments. If you can't work with the one assigned to you WRITE a letter demanding a NEW neuro and state your reasons - that you suffer from CH and need someone who knows something about them or will listen and learn. And I'm dead serious about copying your congressman with everything you mail to the VA. They really gets antsy when a Congressman "inquires" about anything. It gets put in your file and you get a whole lot better treatment.

Hope you're PF soon...

Hugs BD