Good day all, first off, great website. I am a CH sufferer, have been since age 15 when they started. Fought through my "tension headaches" (according to my family doc) until i was 25. By this time, life was unbearable, Kipp scale 9/10 every night 6 or 7 times, it was hell. Found a specialist in Markham Ontario, met with him, he knew exactly what they were and informed me of my CH gift. After 8 months of limited to no success, i was offered permanent disability, as he could not understand how i managed to function on an hour or 2 of sleep a day. Well, thats not my style, so we continued fighting. Eventually (a couple of years) later, we found a med combo that helped, i have seen the drugs mentioned here, and they definately helped. It is amazing to finally see what other people have gone through, and know you are not alone. I hate to sound like a girl thingy, but reading some of the posts here, actually made me cry, because i know exactly what you feel. No-one understands what you feel, even my closest friends thought i was hiding something from them, that the pain cant actually be that bad. Until they watched be throw up for about 40 minutes straight one night and then fall to the floor exhausted (awake) but feeling near dead, it scared them senseless. So, i am currently 38 years old, i see a naturopath on a regular basis, and i am drug free. I have had 1 headache in the last 6 months, and it was a kipp7 at best and lasted 1/2 hr. I sleep through the night and have a wonderful life again. My reason for posting this is, i know what you are going through, please, be strong, and hopefully you will have the same fate as me and pull through it, feel free to email or ask any questions, i saw previously, that we dont want to make medical reccomendations but if your doc can research a reccomendation that what the hell. And by the way, for the 23 year i fought with CH, i never, i mean never took a narcotic, as the only ones that work, are so strong that my 6 foot 4 275lb bodywent nuts (fiarnol).(i lied i tried it once and no idea where i was)

Have you looked into oxygen?

             Potter

I tried oxygen, imitrex, ergomatine,verapamil, sando migraine etc, nothing really helped, it did mellow the pain with a combo of verapamil and sandomigraine taken twice daily, but it was stil 2-3 times a night awake, on the edge of the bed.

At what rate(lpm).

          Potter

I am sorry, i tried the oxygen way back when they first started, i was 18 i guess, i probably didnt have the right mask or anything, but i also saw no results from it, but i cant honestly tell you the rate, because i dont remember (20 years ago). At that point in my life women and partying were most important and CH slowed that process down, i guess being the optimist i am, it may have saved me from my self.

Hi Jon
And welcome!

Check out the O2 link on the left pane and get the up to date info...Just in case!

You are One tough SOB! (is it ok for a Brit to say that here?)

Respect

Gary

Batty wrote on Mar 3^rd, 2011 at 3:50pm:

Hi Jon And welcome! Check out the O2 link on the left pane and get the up to date info...Just in case! You are One tough SOB! (is it ok for a Brit to say that here?) Respect Gary

No Batty it's not, as a moderator I now have to lock you down! ;D

Welcome to the board Jon. When you get a second, read this link:

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

It gives details on how to correctly use 02. I'm hoping the beast doesn't ever make a return visit to you. Experience tells us otherwise, the beast gives us remissions for years at a time, and then loves to suprise us! Give the 02 link a read and save the information someplace. I went from 90-120 minute raging attacks, to 6-8 minute aborts just huffing 02. It's quite the miracle abortive for most.

Wishing you pain free times and peace.

Joe

i sure like to think i am tough, but a crier soon follows when the devils head is reared. i have never had anything for the pain, i just tried to deal with it. And as for you, i hope you are wrong and it never rears it's head again, but?

Question, does anyone else have the very urgent need for a bowel movement when they are in the throws of pain, every headache i got, 1-6 a night always game me some serious bowel movements, i know this is gross, but i found it unusual, and it did it everytime i had a cluster headache. I would think i cant be alone, but i have some weird shit wrong at times.Peaceful sleep all and take care.

Sorry for the repost, but in the comments for the remission, i never had it go away for 22years, it was a constant in my life, and was a thing i was used to, chronic sufferer, never a break for more than a week.so, i hope my recent remission is permanent, due to the fact that i never got one before.

JonBolan wrote on Mar 3^rd, 2011 at 7:03pm:

i sure like to think i am tough, but a crier soon follows when the devils head is reared. i have never had anything for the pain, i just tried to deal with it. And as for you, i hope you are wrong and it never rears it's head again, but? Question, does anyone else have the very urgent need for a bowel movement when they are in the throws of pain, every headache i got, 1-6 a night always game me some serious bowel movements, i know this is gross, but i found it unusual, and it did it everytime i had a cluster headache. I would think i cant be alone, but i have some weird shit wrong at times.Peaceful sleep all and take care.

Not gross at all! ;) It's common enough that it's been discussed several times on the board. I've seen several different theories about the why....I always felt it was similar to the nausea. Your body knows something bad is going on but doesn't know what. Its answer is to purge from all valves! But that's just my personal theory, no scientific work done on that yet.

And make no mistake, I sincerely hope I'm dead wrong and the bastard NEVER finds your address again. But do continue to educate yourself, extra knowledge is never a bad thing. :)

Joe

JonBolan,
I've never had to relieve myself but I do sometimes get a strong visceral (or gut) response.  It can come and go during my attack.  I've thought it too a way the body responds to pain via the "fight or flight" action of the Autonomic Nervous System (ANS).

The ANS is controlled by the Hypothalamus, which recent research has indicated as the source of the CH attacks.  When the body is severely threatened and the fight or especially the flight portion of the ANS is activated the body will "dump" excess "baggage"  :o (to put it pleasantly).  As one physiologist put it: when you're being chased by a Tiger,  what better way to instantly make yourself five pound lighter and make your escape!

Good point about dumping your baggage, unfortunately, generally i am trying to do both at once, thank god for the bathtub, but it does make sense that your body just tries to purge whatever may be causing the ill effect.