I am a 62 year old CH user.  I have been in remission for about 6 years until 2 weeks ago.  I first contracted the headaches when I was about 20.
Currently using Prednisone and Verapamil. Doesn't seem to be working as well as I remember.
Six years ago my doctor told me that it was common that CH sufferers grew out of their affliction.  There might be some truth to that.  We will see after I get over this bout.
Well, thats enough wining on my part.  I just wanted to say Hi and my heart goes out to all of you.
Hang in there.
                                    Just Plain Carl

Hey Carl,

Don't quite know what a CH user is, but I've been afflicted for about 23 years now and only correctly Dx in the last 4-5 i can't recall right now just when.  

There is alot of information to left side bar to read up on and one of the tools you want on your arsonal is O2!

There are other methods we use to battle but that is information for later once you get a real good abortive like O2 on your side.

There is NO such thing as whining round here for someone in cycle, so go ahead and let us have all you got.  You'll feel better by getting it out anyway.

Welcome Home.

    Welcome Carl. I have been pain free for 9 years and am getting close to 60. I asked Prof. Goadsby in July if it were true that many DO outgrow them. He said that in his experience, no we do not. He had many patients over 60 and one that is 92. He DID say that they change as you get older. Times between cycles get longer and longer but also that when the cycle does come, it usually lasts longer than it used to. And that was indeed my story.
     Not what I wanted to heart, but what you gonna do? I just enjoy my pain free time and try not to look ahead at what may or may not happen.
    Read all you can on oxygen and how to use it. It was a miracle to me.

Hello, just plain Carl.  

   Tell us more about yourself.   What have you tried?  What has worked, or not worked?  You have stumbled upon a "family" here and are now part of us.  Anything we can do to help, just ask.   Between us all we probably have thousands of years of experience.   None of us are Doctors...but we do know a lot.   ;)


Linda

Thanks Redd And Jimi
(CH user)   just my term for Cluster Headache episodes
I had an idea once regarding a book "Cluster Headaches, A Users Guide"  
I tried the oxygen several years ago with negative results.  I will try again if my current scripts don't do the trick.
I am still the forever optimist.  THE LAST HEADACHE WAS THE LAST HEADACHE.


Hi Linda
My first episode was misdiagnosed by a neurologist and resulted in several visits to various doctors and dentists, resulting in two needlesly extracted teeth.  I was going for the third and the dentist got me to go back to the neurologist. (same one)  After a big appology he finally got it right. All this took around 6 years or so before I was treated.  I really can't remember all the different meds I had tried. (there were several)  Lithium, Cafergot, Inderal, Imatrex Suppositories (not fun and didn't work), and lastly Prednisone and Verapamil.  The last two seem to do the trick. However, this time the meds don't seem to be kicking in as fast. Just started taking them 4 days ago and still can't seem to sleep more than an hour at a time. At least the episodes are short (15-20min at about a 3 level) I've only had 2 or three in the 10 range in the last two weeks lasting 45 min to 1 hour.  But like I said previously, the last one was the last one.

As for me, I will be 62 Oct. 12th. Married with 4 daughters (probably where the headaches come from), and 4 grandchildren.

Are you a sufferer as well?

Well, thanks for listening to me ramble on.  It's about time to hit the sack and hope for the best.
                                  Carl

Just Plain Carl wrote on Sep 30^th, 2008 at 10:49pm:

I tried the oxygen several years ago with negative results.  I will try again if my current scripts don't do the trick.

Most people for whom oxygen didn't work didn't use it properly and/or didn't have the proper equipment to administer it. You have to have the right regulator (up to 25 liters per minute) and the right mask (only a NON-rebreather will do).

Read up on it by clicking the yellow link to the left and see if you can't give it another try.

And welcome, JPC.

Brew is correct, and alot of reserech has been done in regard to the correct use of O2 for treatment of CH.

Too many Doc.'s have "played it close to the vest".   15 lpm or higher, up to 25+ lpm is a good ratio for our needs to shut down the vascular inflamation.  Again it doesn't work for everyone.  No meds or methods do, but this is the optimum for potential sucess.  This is successful for 70+% of sufferers.  So your chances are very good if used this way.

Any questions please ask.  We are professional sufferers, not doctors.  But we can help you help yourself.  

Redd wrote on Sep 30^th, 2008 at 11:34pm:

We are professional sufferers...

I don't know, Pegg. In my 47+ years on this earth, I've never made plug nickel suffering. ;D

CRAP!
half an hour sleep is the best I can get

Going to try the Melatonin tomorrow.  Hope it works

guess I'll watch another stupid late night movie

Hi Carl and welcome. Please ask your doc about getting a script for o2, it is my #1 abortive, with no side effects. Get on the o2 at the very first sign of an on coming hit. 100% o2 at at least 15 lpm with a non-rebreather mask. Try and stay on it for a few extra minutes after you have stopped the hit.

I also take Verapamil as a prevent, and opted not to do a prednisone taper this time around as I find it makes my body feel like crap.

Read all you can to your left and print off the o2 info and take to your doc. Being educated this round has helped me big time.

Sorry you had to find us, but you are with your new family now, so pull up a chair and again welcome to your new home.

 Barry :)

Yeah thanks Barry,
I plan on doing just that.
However, I'm fine throughout the day. I am getting an attack within 1/2hr to 45min after falling asleep.  It's pretty much full blown at that point.  I am able to walk it off in prox 1/2hr.  I don't know if it would be any quicker relief with the oxygen at that point.  sure worth a try though. thanks.
                           JPC