I am soooo glad I am here.  I have had about all of these things I can take!  I had my first cluster in 1986 while in the Navy.  I thought I was having a stroke.  I lived with them for the duration of my enlistment and for a few years after.  Finally sought some help and diagnosed with TMJ.  The procedure was to saw my jaw in half, extend it and all would be well.  I passed on that.  Later I read that many who did that procedure became worse.
Finally had "enough" again and saw my new doctor.  As bad as it sounds, I was happy to hear he had them also and they were called cluster headaches.  Now I was getting somewhere!!  Well, kind of.  Tried the oxygen thing and it helped, but more often than not, as soon as the oxygen was removed, the pain came back.  Did the percocet thing which helped but WAY to easy to get hooked.  Found myself taking one to "prevent" a cluster rather than help with the pain.  Not good.  
I am a firefighter and you can imagine what it's like fighting a fire with a full blown cluster going on.  Happened more than once.  I tried to hide it for some reason but that did not last long.
Tapping my head, tilting my head straight back, standing in the snow in shorts, drinking ice water, sinus flushing (that HURTS) are just some of the things I have done.  For the most part, I can get the pain to let up in about 20 to 30 minutes instead of the 45 plus it used to take.
They were always on the right side, but the last 3 years they have moved to the left side.  Maybe no brain cells left on the right side!  They were seasonal, growing from one every other day till they hit one every 2 to 3 hours, then slacked off again.  I could set my watch by them, which leads to MORE stress as you all know.  The quiet times between bouts were a God send.
Bad thing is now there is no "quiet" time.  For the last three years they have been constant with an occasional day off.  I apparently have entered into the "chronic" stage.  Yea for me!!  All I know is that I am TIRED of these things controlling my life and tired of seeing the look on the ones I love when I have one.
I thank you guys for letting me vent!!!  I was just coming off one when I found this site, and being able to write about it helps.

Hi LT Bill,

Welcome to the site and vent away my friend. Sorry to hear you have gone chronic, just when you think this shit can't get any worse.. What lpm were you using with the 02..? I know some folks around here are now using a flow rate of 25 as anything under did not offer them any relief. Maybe it's worth having another go at the oxygen.


Lefty..!

Welcome aboard Lt.

Glad you found us and wish you had loong ago.  Not saying we have all the answers, but you will find many of them available here.  

Glad you learned to get off of the percocet!  Went that route myself, and had a time getting away from it.  

May I also suggest you look into oxygen again.  Check out the oxygen info button on the left in yellow.  There have been some advances in its use that have made it a lot more effective.  Along with that, take a look at the O2ptimask available through the CH.com store (also on the left).  It was developed for us by Linde, and is far superior to the old non-rebreather mask.  I find my HA will return if I quit with the O2 to soon.  Perhaps that was your issue.

Feel free to ask questions!  That is why we are here.

Jerry

Im glad you found this site, although sorry for the reason. I am also new to the site but a long time CH, I hope the site will help you as it has me. You bring up a point I have often thought about (the jobs we do and dealing with CH), I am in construction, if I get an attack I can close my office door and deal with it in private or if bad enough leave the office and maybe a little road rage. I cant imagine how Fire, Police, Military, Surgeons, Pilots etc who cant leave their post to deal with this shit, Don't mean to leave anyone out or down play any of our misery with the work we do just an observation. I tried a couple of years in the early 80's to become a Police Officer but for every 2 positions open there were tons of applicants so I was not successful. Soon afterwards I started getting the CLUSTERS. I often wonder what if I had gotten selected. Please share your thoughts
byrnie

   welcome to the maelstrom LtBill. My first CH was also in the service, May - 69 Marines. Always April thru June, which worked out well in civilian life. As I just went into the family business of distant waters fishing. And I can take that time of year off if I choose. I became cronic in March of 2000, but by then I had my prevents and O2 lined out, so life is manageable if not easy.
   For O2 I use a OptiMask2 @ 25 LPM. For preventatives 100 Mg Topamax (Dopeymax) a day keeps the worst of them away, with the occasional bad one getting through. There are a whole range of preventative out there that you and your Doc can try until you find the right one for you. I have medical issues that keep me from using my favorite ones. Since you were a Squid in 86, you should be young enough to take a lot of the good stuff like Verapamil and Lithium. Not like geezers who have serious health issues like Chuck, Svenn and me.
   Stick around lets discuss this shall we. Let me know your mind.
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