I am a 20+ year sufferer of the episodic type of CH. I had not had an episode for 18 months until two nights ago. Yes, they are back with a vengence.

I was trying to explain what I go through nightly to a co-worker and stumbled upon your site and immediately registered. I think it will be nice to have a place to talk to people who really understand how I feel.

howard

Hi Howard,

If you stick around, read and ask questions, I think that like so many of us, you'll find this to be more than just a place to talk to people who really understand how you feel, you'll learn about ways to take action to beat this beast back.

Ways that doctors have been too slow to catch onto yet.

One good example would be the newer, much more effective approach for O2 use, outlined at the oxygen info link on the left of this page.

Welcome to the nut house Howard, I gave up a long time ago trying to explain to others what they were like....always felt like they thought I was trying to exaggerate. Now I just hang out here and whine.....people here actually get it!

When you have  a second, let us know what you use as prevents and aborts. The strength of this board is the thousands of years of real time experience dealing with the beast. Maybe you'll throw a new tool our way, maybe we can make some suggestions to take back to your doc.

Just finishing an 8 month cycle that came on after a 2.5 year remission....had almost convinced myself I was cured! They end and you do get through them. So glad you found us, welcome home.

Joe

May I add my welcomes to the distinguished list CH vets already welcoming you? Rare company indeed, my friend. As to explaining this beast, the letter to colleagues and employers at the top of this posting board is worth checking out. In the meantime, start huffin' O2! Blessings. lance

Hello and welcome Howard

I too find the brain freeze description a good way of describing a ch hit as Donna said most people have experienced this and can relate to it,

I explain that it is similar to brain freeze but about 8 times more painful and lasting from 1/2 - 2 hours and can happen several times a day . The usual reaction is a wince and oooo followed by not a little disbelief , but I think the message kinda gets through.

Have you tried energy drinks like Red bull or anything with caffeine and taurine in it . they can reduce the pain of an attack or even stop one if you chug a can at the first sign of an attack.

good luck and God bless

Nigel

Thank you all for your welcome wishes. I have been exploring the site more thorouhly today. I read in someone's post that Red Bull is helpful as an abortive. Plan on stocking up tonight.

Howard

Greetings Howard,
                          I'm also a newbie but have been watching all this wonderful info on these boards for years, definitely should have signed up years ago! My hubby has been suffering in silence for 25 years with this condition and I seem to be repetitively trying to explain to friends and doctors the severity of his pain with not much luck unfortunately. Just the other day I found a printable letter to friends and colleagues of cluster headache sufferers on the ouch-us.org site. I have given it to friends and the receptionist staff at the doctors with awesome results, now that they truly understand what pain level we are talking about their attitudes have changed dramatically. Check it out if you can its the best description  and so easy to just hand it over without those doubtful questions from  people that are ignorant or uneducated to what your going through! I'm still learning but I think the link is:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or then click on colleagues letter.  Goodluck!
                                    Regards Shell

Thanks for the link Shell. I gave it to my assitant and I think he is beginning to get it. I also used the "brain freeze" example. He cringed with that one.

Tried red bull last night for the first time. i think It did help decrease the severity.

Howard