So this is a first for me all the way around.  Can't say that I have ever posted to any message board in my life so here goes.  I have been an eposodic CH since I was 17 (1997) and had my first attack.  I rolled around in the floor of my parents living room off and on for two days before my mom decided it was time to go to the hospital.  They gave me an injection of Demerol I believe and everything went back to normal.

A couple years later when I was in college "The Demon" showed up again.  I like "The Demon" much better than what I used to call it which I will not repeat here.  My doctor at the time, a real know it all, ordered up some tests and basically dismissed it as typical migraines attributed to me drinking alcohol and staying up too late.  Needless to say I suffered through some cycles without any knowledge or treatment of what I actually had.  Mostly self medicated by whatever I could get from somebody else.

After I graduated and got married, I started seeing a family friend of my wife's who was a doctor.  The first attack I had when I was married my wife picked up the phone and called this family friend.  The next day she diagnosed me with CH.  She has prescribed different meds over the years including Imitrex (using shots now), Relpax, Maxalt, and Predisone.  A combination of Imitrex and a steroid seem to work for me, but I cannot stand the way they make my heart feel.

The reason I am on here now is I am in a cycle for the first time in a couple of years and this time we discussed using the O2 to abort the attacks.  So I started researching on my own and here I am.  I was so excited when I found this site and fellow people who understand my pain.  Sorry, I don't mean that I am excited the rest of you suffer in pain as well.  It is just so difficult to explain to people who don't know what you are talking about.  The only people who truely understand my pain are my mom, dad and wife who have witnessed me at 2 am rolling in the floor and beating myself in the head.  Just hoping I can avoid one tonight!

Welcome to the board, read this:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Everything you will need to know to talk to your doc. HOW you use 02 is critical to its success, nasal canulas, re breather masks, low flow rates, all guarantees of failure. In a nutshell:

A Non Re Breather Mask, a minimum flow of 15 LPM, preferable 25 or better, get on it at the first sign of an attack.

Also, discuss with your doc a prevent besides the steroid, bad mojo if used long term. Verapamil is a common first line prevent, effective for many, but at doses higher then most GP's are used to, some going as high as 960 mg a day to get relief.

Also, look into energy drinks, rock star, red bull, any containing the combo of caffiene and taurine, chugged at the first sign of a hit many can abort or at least reduce an attack. If you do go on the veraamil, limit yourself to one energy drink a day, taurine and verapamil don't play well together!

Then start reading like crazy, an educated CH'er hurts a lot less!

Joe

Hey Dustin,

Glad to see you got the excellent advice right off the bat!  :)

Since you're currently using imitrex injections I'll just add one more thing for now - attacks can be aborted with 1/2 to 1/3 the usual dosage, lessening the side effect risk. Here are the details on how to do this: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Dustin wrote on Jan 19^th, 2011 at 10:07pm:

I was so excited when I found this site and fellow people who understand my pain.  Sorry, I don't mean that I am excited the rest of you suffer in pain as well.  It is just so difficult to explain to people who don't know what you are talking about.

I know exactly what you mean.  Felt the same way when I found this place.  We all did :)

Welcome! 

You won't regret Oxygen therapy. 

-Dennis-

Hi Dustin...welcome to your new family  :)  I know exactly how you feel, I too had never posted to a message board or been in a chat room until I came here last summer and it was a life changer.  The people here really care about each other and are here to help you.  You will get more information here on how to fight this battle than anywhere else in my opinion.

Read, read, read all you can and ask questions.  You'll get a variety of options because what works for some does not always work for all.  But with knowledge and the help of a good headache specialist, you'll get the weapons you need to fight "the demon".

Please send your supporters this way too.  I've been my hubby's supporter for over 20 years.  Your wife will be able to connect to others who can help her help you.  Hang tough, you've come to right place.