Hello- I was first diagnosed with cluster headaches about 2 years ago. I went through hell when I first started getting them. The neurologist that I went to put me on oxygen 15psi (I think its psi) with a non-re breather mask. It seemed to work, however not all the time. Well its been 2 years since they went away and now they are back worse than ever. The oxygen does not seem to do a thing anymore. I know I am preaching to the choir, but its been hell the last week with 4-7 a day. I have an appointment this Wednesday with the neurologist. Is there anything that i should ask him to do for me when I go? Any help would be greatly appreciated. Thank you and God Bless.

Brian in Orange Park, Florida

Hey Brian, sorry you're getting slammed. Read the oxygen info link on the left, make sure you're using the correct set up...non re breather mask...and you're getting on it at the first sign of an attack.

Did your doc have you on any kind of preventative medications? Verapamil, lithium, depakote? A good prevent will reduce the number and intensity of your hits, helps ease up on the number of oxygen tanks you go through!!

Then ask the doc about stepping up to 25 LPM. many who have had 02 lose it's effectiveness have found relief again at higher flow rates. If he says no....check out e-bay for a high flow regulator.

Joe

Keeping my fingers crossed for you. Let us know how it goes.

Joe

Verapamil is a pretty standard first try prevent. What dose did he put you on? We tend to take it at higher doses then blood pressure patients use it at, some go as high as 960mg a day. This is one of the meds you DO NOT adjust dosing without working with your doc as it can cause dangerously low blood pressure. A great fist line prevent. 3 things about verapamil come to mind:

1: expect it to take 8-10 days to ramp up in your system and become an affective prevent.

2: It'll back up the old poop chute! Add lots of fiber to your diet to keep things moving along!

3: Sometimes it keeps little elvis from umm..."rising to the challenge" shall we say! You'll have lots in common with the guys on the Viagara commercials!

(WE aren't terribly shy about discussing the various body functions here!)

I've heard a little about the Amerge but haven't used it and don't know enough about it to help you. Hopefully somebody smarter then me will help you there!

Joe

And what about the oxygen? Did he prescribe a higher flow regulator?

Lottie 

Be ready to up the verapamil doseage if you don't get relief within 10-14 days. That's a fairly low doseage...although some get relief at that level. I know i sound like a broken record but it's important to stress that you don't increase the dose without working with the doc.

And watch your bag...if you're completely deflating it when you breathe, you need to step up to a higher flow regulator. My wife just snagged me one for $8 off of E-bay.

Joe