Last year at the beginning of Fall, I had a bout of headaches that landed me in the ER 4 or 5 times.  They tried Topomax and while on a hunting trip I almost decided to commit suicide.  I decided that while I could not control my thoughts, I could control my actions.  So, I got my gear together, called a friend and asked him to stay on the phone with me until I get home safe.  I got off of Topomax the next day.

I still struggled with headaches for a few months, mostly treating with narcotics and Imitrex. 

They went away by spring.

Here we are and it's fall again.  I was in the ER 5 times and hospitalized for a week, got out of the hospital and was back in the ER the following day in more pain that I can imagine.

Since then I have found this site and have learned that there is a cycle to this madness.  Here is what I have learned.

My headaches spike at 9am and 4pm daily.  I am ready for them and have a Redbull or a Cafegort on hand.  I always have a headache during my season and Motrin and 1/2 of a Vicodin (5/325) will usually manage it for me. 

My spikes are still occurring but with less severity.  Each day it decreases by about 10% now.  It's 10:30 and I have taken only a Cafegort and am functional.  This is the best I've been in three weeks. 

I have learned so much from y'all.  Thank you all so much for your support. 

I am still working on getting O2 set up, I have an apt. with the Nuro at the VA in November. As of now I don’t see a problem with that happening. 

Like I said, I still have a headache and it's more nagging but I don’t feel like there is a demon in my brain stomping around and pulling on the back of my eyes...

This group gave me hope, and hope is a dangerous thing in the hands of a driven man.  Thank you...

And you've just nibbled the crust of what's available now to deal with CH. Continue to read, read, read. Knowledge is your most powerful weapon against the beast. Even when you find an effective regimen, keep reading. You always want a plan B and plan C!

Glad you're finding relief...wait'll you get oxygen. You'll discover why many of us preach 02 with the fervor of an old time revival minister. Imagine feeling an attack starting, and 6 minutes later being completely pain free, with no side effects. That's oxygen.

Joe

Hey Pat - that sounds like a good friend you have there who stayed on the phone with you during that critcal time.

We hate to see someone getting hit so hard, what with your ER visits, hospitalizations, etc.

I predict the info and advice you'll gain here will revolutionize your CH experience as it has mine. Revolutionize as in enabling you to prevent and abort attacks much more successfully and routinely.

Many of us do require the high flow/non rebreather style O2 for max effectiveness, so if haven't done so already, you might want to check into ordering a regulator and mask that will allow this, as outlined  in the oxygen info link.

Glad you found us and we were able to give you hope.  That is what we are here for. 

It sounds like your cycle is winding down.  Please let me suggest that you stay around for a while and do some serious reading even if the cycle ends.  Then you will be prepared for the next one which may or may not come on schedule.  Many times people will find us and then want to forget about CH when the cycle ends, but when it hits the next time they aren't ready and come back in a panic.  It is very hard to get caught up when the pain is so bad.  It's much better to be prepared ahead of time.

Just my $.02

Jerry

Jerry,

That is good advice man...  I will stick around and I will be more prepared if and when they return, on schedule or not. 

Oh, and Semper Fi...  (I just noticed that your the
"Proud Father of two U.S. Marines"...)

And since it sounds like you've been to the ER like over a dozen times now, you'll probably be one of the first to testify that the ER is little to no help for CH patients. Like Jerry said, read and get prepared. You at home with an O2 tank, maybe another abortive, and a preventative plan you've worked out ahead of time with your neurologist at the VA will be scads cheaper and light years more effective than an ER staff that looks at you like you're a drug seeker.

Brew,

Actually, I'm one of the lucky ones.  The VA ER Staff is really quite accomodating.  I try to never go there but when they see me they know it's for a reason.  I am treated quite well by them. 

They saved my life a while back, literally.  When I lost my job two years ago I went into the VA to get registered for benefits.  Three weks later they found a bloodclot eight inches from my heart.  In my uppr left arm, clost to my arm pit.  Then and ever since they have done right by me. 

As for the headaches, I am hopeful that my Neuro visit will get me pushed on to a headache specialist.  Once that happens, I really think that things will get better.  It's just a matter of geting from here to there...  That's the painful part... Literally...

Meanwhile, I will continue to read and learn and hopefully be better prepared for the next cycle. 

Obviously, you guys are a huge part of that...