It's been a while since I was last here and posted. Probably almost 6 years.

I'm an episodice suffer and 5 1/2 weeks into my current full-blown cycle, though I started getting my shadows - or what I call "F-you" headaches about 2 weeks prior.

It usually takes me about a week or so to realize that it's a cluster cycle coming on - deny, deny, deny.

At any rate, I've been aborting with Relpax since mid-late September with a lot of success. Just a lot of pain (tenderness and "cluster-bruising") and exhaustion after.

I'm typically a daytime sufferer, but this cycle has been completely different. Late night, wake me out of a sleep, or first thing - as soon as I open my eyes, attacks. Only a handful have been my normal - 2 hrs after waking up - and they've been the worst.

Food seems to bring them on in the am unless I wait to eat until after an attack. And it aggravates the shadows in the evening.

I haven't had a drop to drink in 2 1/2 weeks. Got fed up a few weeks ago and mixed vicodin and Relpax with a margarita chaser only to remind myself how stupid that is.

I've pretty much given up on the vicodin to help with the shadows also. It's not helping so I haven't taken but two 1/2 tabs in the last week.

I've been to countless doctors in the course of the 15+ years that these have been as bad as they are including neurologists, pain management clinics etc. No more imitrex for me. Doesn't work any more and the Dr. doesn't want to prescribe the injections. I'm cool with that as long as the Relpax keeps working. I can abort an attack within 10-30 minutes. I just wonder if all that I am taking is just making this cycle last that much longer. 5 1/2 weeks is longer than typical. Most last 3-4 weeks, but I did go 8 weeks once... the year that they tried Prednisone, Depakote, Vicodin, you name it...

Anyway, I have yet to try O2, not for lack of wanting, but because I never have the opportunity to try to see if it will work for me. I am not getting hit during office hours and by the time I get to an ER, it'd either be almost over or so bad that I'd take something just to ease the pain. Any suggestions with that one?

Well, that's enough ranting for now. Sorry that I'm back here and that you're all here to read this. I know we're all going through this together which is somehow comforting, but I really wish that this site did not need to exist.

I'm just frustrated, angry and want my life back and I know you will all understand.

Thanks for reading...

~ Katie

Still not sure if I can get an Rx from the Dr. if I don't know if it will work. Does anyone know anything about trying welder's O2? I should be able to pick that up, I would think. I just don't know what I need to do as far as obtaining a regulator and using...

Katie C. wrote on Oct 26^th, 2010 at 12:26pm:

     You joined in September of 09.

               potter

@ Potter - I didn't realize that I has posted last year. I joined the old site back in '04

I'm afraid of the caffeine. I really try to limit my caffeine regularly so that I don't get those HA's too. Too much, I get a HA, too little, I get a HA. I suppose it's worth a try though, what the heck.

Hey, also, while I'm thinking about it, does anyone have a recommendation for what to do to get rid of the persistent ache and pain after a CH has passed? My scalp hurts, my forehead hurts, my whole right side generally feels like I smacked my head, the pain goes down my neck and into my upper shoulder. Advil, excedrin, vicodin, nothing takes the edge off and I know I'm just feeding the beast by taking this stuff. Any advice is appreciated. I've never found anything that really works, just lived with it for years until it finally subsides and I'm back to normal for another year. 

I'm so sick of this and I feel like I'm just complaining. You guys understand but I feel like that's all I ever talk about with friends and family. I know that they're concerned, but their first question to me lately is "how are you feeling?" Even when I try to lie, it's no use, they can see it in my face that it hurts.

Good to know. I've spent the last hour reading about the O2. If an E tank only lasts like 44 minutes, do you keep additional tanks on hand? How do refills of O2 work? I'm really interested and am seriously considering the welding O2 but my husband has reservations since we've never used it before. I wouldn't even know what kind of regulator to get with one. Ugh.

Joe,

Thanks again for the info. We have pretty decent insurance so I'm hoping that it works to get some extra tanks. Do you keep a portable, too? They look pretty small and I don't see how they would last long enough to abort an attack.

You'd think that after this many years, I would have figured this out already. I guess I just wasn't ready and was young and too vain to walk around with O2. Now, I could care less. If they have to see me at work with oxygen, it's a lot less scary than having to see me with the beast.

~ Katie

If you can, you should get medical O2, it will make it easier for you. But be sure your Dr. writes the Rx correctly. Print out the link below from one of the top Neurologists in the US, and take it to your Doctor.
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

If you end up wanting to use the welders O2 then do a search on this site to get the info you need. Use one of the search engines near the top of this page.

I abort 98% of my CH hits with high flow O2 25lpm+ and a O2pti mask available on this site at the CH.com store.

Good luck,  Don

For the first 25 or so years it was like clock work, 3 month cycles, spring and fall, 2 hits a day, morning and early evening.

Then I hit my mid 40's and they went all over the map, I've had remissions as long as 2 years, and cycles that went 8 months.

The only consistency has been lithium as my prevent, and oxygen as my abortive.

joe

Well, I think that the Red Bull just postponed the inevitible. Got hit a little after 9 a.m. but nothing that 40mg of Relpax couldn't beat in 10 minutes. I hate putting more of this stuff into my system. I'm going to try to see if the Dr. will just prescribe the O2. Don't know where else to turn.

For the "afterglow" headache, I usually use excedrin.

Katie C. wrote on Oct 28^th, 2010 at 7:53pm:

WOW.  That's the full monty.

        Potter

Katie that is fantastic news!! Potter's right, damn, they gave you the full broadside salvo there!!!

Joe