Hi,
I've had CH for 15 years now. Every time I'm in cycle I read the forums here. I decided to register and place this post in order to give a word of encouragement to those who have just started to be effected by this terrible condition.

Treatments have never done much for me. That's the bad news. The good news is that as the years have gone by the severity of my condition has progressively eased. Ten years ago I'd have 2 episodes each year that lasted around 8 weeks. A terrible headache every day (night) lasting 1 1/2 hours or more. Some were so bad that tears would squirt from my left eye and that area would always be sore as if I'd been punched in the eye. The pain made me frantic.

For the past 6 years I go 18-24 months between episodes. They last 4-6 weeks.  I have some PF days. Most headaches are 3/4 of an hour or less. More importantly, I have significantly fewer monster attacks.

Twelve years ago I thought my life was ruined. Now I'm reasonably happy. When I'm in-cycle I just kinda lie low for a month. One last thing...don't expect anyone except those you're VERY close with to understand. Before my first CH I could not have fathomed pain this acute. Things are better for me now.
Steve

SteveinVT wrote on Oct 24^th, 2010 at 11:14pm:

Hi, I've had CH for 15 years now. Every time I'm in cycle I read the forums here. I decided to register and place this post in order to give a word of encouragement to those who have just started to be effected by this terrible condition. Treatments have never done much for me. That's the bad news. The good news is that as the years have gone by the severity of my condition has progressively eased. Ten years ago I'd have 2 episodes each year that lasted around 8 weeks. A terrible headache every day (night) lasting 1 1/2 hours or more. Some were so bad that tears would squirt from my left eye and that area would always be sore as if I'd been punched in the eye. The pain made me frantic. For the past 6 years I go 18-24 months between episodes. They last 4-6 weeks.  I have some PF days. Most headaches are 3/4 of an hour or less. More importantly, I have significantly fewer monster attacks. Twelve years ago I thought my life was ruined. Now I'm reasonably happy. When I'm in-cycle I just kinda lie low for a month. One last thing...don't expect anyone except those you're VERY close with to understand. Before my first CH I could not have fathomed pain this acute. Things are better for me now. Steve

Not much to go on Steve.

            Potter

SteveinVT wrote on Oct 24^th, 2010 at 11:14pm:

Treatments have never done much for me. That's the bad news. The good news is that as the years have gone by the severity of my condition has progressively eased.

Well, if what you say is true, that is good news for you! And many do experience a remission just as rapid as is the onset of CHs. But not everyone. And you still have them, you're just "handling" the pain. We want to manage the attacks better than that which is why we encourage the use of good abortives and preventatives. Just curious...what have you tried that hasn't worked? Blessings. lance

What they just said! ;)

Like you, as I've gotten older, the intensity of the beast has seemed to lessen. Although I'm not sure if that's because the pain is less, I am better at handling it, or my treatment regimen has just made it easier to handle! The reason we perk up when people mention that traditional meds don't work, is we've read so many horror stories about how badly the meds were prescribed:

02 at too low a flow rate, using re breather masks or even worse, nasal canulas. Verapamil used at pathetically low doses, imtrex given in its oral form, and the list goes on!! :D

Then there are the non traditional treatments found on Clusterbusters.com which have given life and hope back to many!

All that being said, really glad you've joined the board! Hope the beast loses your address permanently.

Joe