9 years almost 10 with clusters and a lifetime of migraines handed down to me by my mother, thanks Ma.
The past few months, the pain does not go away at all and I am sick all day & night.
The super attacks are worse than ever and I am now broke not able to afford my injections anymore because they went from $154.00 to $400.00 for 5 bottles.
I am scared to death of not having a shot when I need it but, it is coming and coming quick.
Before I got signed on here, I did a little reading and see there are people that have it much worse than me, I can't imagine that because I am on the verge of giving up.
The tears don't stop flowing anymore, I feel like a scared little kid and I am 48 years old.
Now that I am in the site, I will go read around and see what I find.
Thanks for being here.

Welcome to the board...when you get a chance, give us a rundown of how you are dealing with your attacks, what you use for a prevent and abortive. Maybe we can make some suggestions to help with this cycle.

Joe

If you were breathing oxygen thru your nose you were probably using nasal canulas which are worthless for CH. For oxygen to abort an attack, your lungs must get 100% pure oxygen, no outside air, no exhaled air, so nasal canulas, re breather masks, low flow rates, all are recipes for failure. The vast majority of people who try oxygen correctly, get relief in minutes. Please, even if it has not helped you in the past, read the oxygen info link on the left and give it a shot.

You haven't mentioned a prevent, a med you take daily while in cycle to reduce how many hits you get. I use lithium at 1200 mg a day it blocks 60-70% of my attacks. Verapamil is a common first line prevent and Topomax also has a loyal following.

Have you tried energy drinks, Rock Star, Red Bull, any containing the combo of caffeine and taurine, chugged at the first sign of an attack many can abort or really reduce an attack.

Lastly.........look at   clusterbusters.com    treatments outside of the medical mainstream that have proven effective for many of our members.

Hang in there.....all of us are on your side and will help you any way we can.

Joe

My nose has nothing to do with the way I breathe O2.
I use a mouthpiece.  Most people I find who says it doesn't work, probably gave up on it too quick due to low flow rates, incorrect breathing techniques and impatience. 

Fitz, try the O2 again.  Chances are, it does work for you.  We are here to help with any questions or advice on using it.  I STRONGLY encourage it because the sumatriptan is only going to cause "rebound" headaches which is something you don't want.

All the best!
Chad

What flow rates have you tried? Do you use a non-rebreather mask? Since you can't breathe through your nose, have you tried the mouthpiece adapter on a non-rebreather apparatus? Have you tried hyperventilating with demand valve?

There are many specific questions you have not answered - other than that you gave up on O2.

One more question: You don't really blame your mother for something that is purely a genetic twist of fate, do you?

You have much to read and learn about using O2 to abort a clusterheadache attack. Start here:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

The idea is to super-saturate your blood with O2. This takes a few minutes breathing nothing but pure O2 (using a nasal cannula mixes a lot of room air with the O2). Hyperventilating is a must, therefore you need to be at a flow rate at or above 25 liters per minute.

It's all there at that link. It appears as though it hasn't worked for you because you weren't doing it right. Not your fault - nobody taught you. Now you need to read and learn and git 'er dun.

Fitzpatrick wrote on Sep 14^th, 2010 at 2:57pm:
I don't have a silly little nose piece, I have a mouthpiece with a bag called a "non-rebreather" mask.  I just use the mouthpiece rather than the mask.  You still haven't answered anybodies question regarding flow rate.  That's huge if you want results.  Take Brew's advice and read the O2 info to your left column.  I suspect you are using the wrong kind of mask set up and a low flow rate.  I never even tried O2 until I got instructions here.  A lot of doctors don't realize you need high flow rates and a non-rebreather mask for O2 to be effective.

Give it another shot, I swear it will probably work.

Chad

No question it can seem a little  over whelming! The good news is you won't find a more comprehensive collection of info on CH anywhere. Keep reading, knowledge is power with the beast.

Joe

Apria delivered the O2 today with 2 different size bottles, one big bottle about 4' tall and 4 portable bottles but, they did not get me the non rebreather mask like it said to do on the damned prescription.
So I am waiting impatiently for them to bring it here now.
I have not taken any Imitrex pills today but, I did do two 3mg shots and my head is still killing me in waves.
I have to detox myself from the pills, it is not easy to do but, I kicked a gram and a half a day heroin habit and stopped drinking alcohol 10 years ago so I can get off of these pills too.

Quote:


Please tell me you did NOT use all of these at once or all in one day????  Please tell us that.

The pills are generally useless for us with CH.  They take far too long to work.  They are made specifically for Migrainers, not us.  Also...hyperventillating with the silly little nose cannulas is a waste of time and effort.  You will need a regualtor that goes to at least 25 LPM.  They can be bought on E-bay.

I understand that reading the links as well as all the posts here can seem daunting...do it.  Start with the links to the left of here.  Ask questions here and we will all try to help you.  Remember no question is stupid.!!!!      That is what this site exists for.

Linda

edit to add:  You local supplier should be able to give you the proper non-rebreather mask but if not send me your address in a PM (up above) and I will send you one.

Ray,  The non-rebreather will be in tomorrows mail. 

In the meantime PLEASE stop taking that much Imitrex.  We don't want you to have a heart attack before we even get to know you.   

Guiseppi wrote on Sep 14^th, 2010 at 12:38pm:

I have tried a lot of preventive meds finding out that I am allergic to Predinzone breaking out all over my whole body head to toe and Lithium gives me tremors so bad I can't hold a drink.
I never heard of Verapamil and will take that to my doctor the next time I am going. Topomax did not work.
I can't drink energy drinks anymore, caffiene does not agree with my system. I only drink water, nothing else crosses my lips.
Everything is poison or toxic in one way or another, so I will stay with water.

Potter wrote on Sep 17^th, 2010 at 1:05pm:

That's why I don't eat any kind of seafood, it is disgusting.
My water is highly filtered or pure spring water, I even shower in filtered water because the water in Los Angeles is a toxic yellow out of the tap and smells like Clorox, shit or both.