Hello everyone. I am new to your site, and VERY excited to have discovered this. I have spent a few hours reading posts prior to my introduction and must say, I feel overwhelmed with emotions. There are a few people on here I would really like to talk too-
I am new to the message/forum stuff so please excuse any lack of savvy, and don't want to come off as some social misfit or eager beaver, so feel free to slow my roll when need be.

I'll give a short history for now, and will try not to be invasive or rude with future posts. I have been a chronic sufferer since Aug. 1993, and diagnosed 5 years ago. I am pretty familiar with every RX and unconventional treatment I have run across on CH sites so far. I put the brakes on a 2 year ride of Sumatriptan injections about a month ago and not using anything for the moment. The Imitrex aborts my attacks within minutes, but "The Beast" knows whats up. Knowing to return 4-6 hours later with some payback.

I am 36yrs. old, working-class hero, married with 2 children and so friggin excited about this forum I can't stand it.

Thank you-I look forward to conversing with fellow 'clusterheads'.

Welcome!
Where are you as to O2?

Took the O2 ride 4-5 years ago. Was something along the lines of 10 litres for ten minutes. Can't remember specifics, but remember it did not work. I made a big mistake by never keeping some sort of log or record of my treatments. Medical records are vauge and not really helpfull. I am afraid I can't offer much to ANYONE as far as tech. data for treatment goes. Only one relief out of all the meds I have taken= Imitrex 4-6 mg Statdose. If you can call it relief, that's a whole 'nother topic.

Talk about my experiences (side effects, changes in patterns,ect..) is all I really have to offer other than how this disease has affected my life personally, and I am DYING to speak with someone who shares this with me. There are a few statements I have read throughout the past few days that have triggered a relief so overwhelming, that I started to cry uncontrolably. I Have never met anyone with the same thing I got, and when I read these statements, I KNOW, it is the excact same thing. It struck a chord I never knew I had.

Sorry for rambling and the spelling.

Here was the one that hit me like a friggin train wreck-

My right eye felt like I took a couple punches, and my right nostril was starting to leak. I got out of bed, and went downstairs, all the while, this pressure in the right side of my brain kept building and building. My right eyelid was beginning to swell shut. I was squinting and it was tearing. I kept looking at the tears coming out of my eyes, convinced there was blood pouring out. I dropped to the floor and pressed my hands so hard against my temples that I thought I was gonna crush my skull, it wasn't helping. I got up and well, I went insane. It's the only thing I think I can describe it.... stark raving lunatic insane!

I was pacing from room to room, crying, flinging myself to the floor, getting back up again... holding my head, squeezing my temples, I looked up to the MAN above and literally begged him, that I would do anything, ANYTHING, just make this madness stop. He wasn't in that morning, and I suffered. I wanted to die, just simply that, I wanted death to take me as I just could not deal with this excruciating, horrible, horrible pain. I was chewing Tylenol like tic tacs.. screw swallowing, I was chewing them into a paste... 10 minutes passed, then 20, then 30... I swear my brain was cooked. I mean, the entire right side was numb from my forehead to behind my right ear. I was rocking myself in this chair wimpering like a lost little boy, and then, as suddenly as it started... it was gone.

I was SO freakin exhausted, I couldn't find the strength to climb back up the stairs so I slept in the chair for 2 whole hours when the madness started all over again. I could not belive this shitty ordeal was starting once again! Who the hell did I piss off to bring this upon myself? I would not wish this on MY WORST ENEMY! By 6am, I was wasted. I mean, I had nothing left in the tank, I just didn't give a rats ass anymore. I just couldn't believe it was finally over, or was it?

I was fine the entire day, a little worse for wear I will admit, but no headache... until about 2am the next morning, and the morning after that when it all started over again. Here I sit at 1am in the morning on the fourth night. I am terrified to go to sleep. It's like a freakin' Freddy Kruger movie where everyone is fighting to stay awake, cuz they know what's comin' a knockin' once you fall asleep. Whomever said "You have nothing to fear, but fear itself" never had these kind of headaches. I don't fear much, but I tell you... I sure the hell fear what's gonna happen in the next few hours."

- Jeff

Jeff- We are practically related. I'll get that quote thing figured out so sorry. I have alot of penned up S@#t that I have had NOBODY to relate with about, then I find Jeff. And others too- How crazy a few paragraphs can offer so much relief that I was weeping like a child! The gods are crazy man...

Welcome to the board! About the only way you can offend us  is to show up here and promise us a cure for only $29.95...and you just happen to be selling just the cure! ;)

Yeah that "Holy $hit I think I'm gonna cry is a common reaction too. To hang out with a bunch of people,....who you don't have to try and explain an unexplainable pain to...it's pretty cool. Read the oxygen info link on the left. In the old days they were prescribing it at 7-10 LPM using rebreather masks and it did not work. 02 therapy requires your lungs get only 02, no outside air, no exhaled air. Tis requires a high flow regulator...at LEAST 15 LPM, and a decent Non Re Breather mask. I can abort in 6-8 minutes using oxygen, I'm 49 years old, 31 with CH. Please take a look at it, used correclty it's having a phenomenal success rate...no med hangover either!

Damn glad you found us, pull up  a seat and get comfy and start reading like crazy!

Joe

Thanks dude. I never realized there was so much info on the web about clusters. Holey moley. First time I heard the word "cluster" was 5yrs. ago, right around the time our computer took a dump, just got a new one 'bout a month ago and abracadabra... We don't use the PC for much, and wouldn't have bought this one if not for my 9 yr. old daughter.

As for the o2, I'm going to the Ryan Headache Clinic down in St. Louis next month, will ask/tell my Doc update me on some O2. Please forgive me if I never sound too enthused about advice on meds. It's not bravado or being rude, It's just been a long ride brother.

I have calmed down a bit from that last post, the fact that there ARE people just like me has pretty much sunk in. The crying part is embarrassing a bit, but hey, It feels good crying for some other reason than pain and misery. I want to talk with someone eventually. Someone like " Jeff " or that Chuck guy having an attack on YouTube, or you Joe. I mean on the phone or in person, nothing against the virtual world, but I have been keeping my ears perked up for almost 16 years for one peep outta someone like me and I finally scored a touchdown dammit! New score== Mike 1 - The Beast somewhere around 6,000.

Thanks again. P.S. was just out in Temecula for visit, hadn't been in there in 10 years...That place got HUGE!  Texas Little's baby :)

Welcome to Clusterville Mac

You're around St. Louis? Well have we got a deal for you! A BUNCH of us are decending upon St. Louis next month (about the 22nd to be exact) at the Crown Plaza Hotel for a few days... Now if you wanna meet some Classic Clusterheads up close and personal - that's the place to be (aww come on - we don't bite -- some of us have been meeting for 10 years or so and I've yet to meet an axe murderer :)).

Go to the OUCH website on the left and read all about the convention. It's an experience and you'll never be the same. This MB is wonderful, but meeting other Clusterheads face to face is an experience no one has yet be able to explain (and we've tried).

Check your PMs - my phone line is open 24/7. If I happen to be out leave a message on the machine and I'll call you back. (I'm older than dirt and harmless, but am chronic so I DO understand - trust me). Sometimes human contact helps.

Again welcome to Clusterville. Sorry you had to find us, but you're in the best place you can be....

Hugs BD :-*

BarbaraD wrote on Jun 14^th, 2009 at 6:56am:

I've yet to meet an axe murderer

That is not quite true ... It is just that most of us leave our axe murdering equipment at home when we go to these gatherings ... LOL!

As that cantankerous, ornery, old broad, Barbara says, get to the convention in St Louis!  You get to meet a lot of sickos interesting people there!  You even get to meet  Barbara ... (I feel sorry you, for having to meet the old battle axe ... But there will be others there to protect you ...)

BTW, we tease and harass each other, but you will not find a more supportive group than this gang of misfits.  I have been going to these conventions and local gatherings for the past six years, and I wouldn't miss one for anything!

Barb sent you her number.  Give her a call.  She is a bit ditzy (as old broads can get) but she is a decent phone call ...

I will send you a PM with my phone number too.  At least if you call me, you will talk to a sane individual.  (I am the only sane one on this site, BTW)

ALSO, do NOT be embarrassed about crying during a hit, or even once you found this site.  It is a VERY common reaction.  And this beast is one of the few things that can make a big strong, strapping, he-man, fall to his knees and cry like a baby.  Most of us have.

I am glad you found us, and I would be happy to talk to you!

Chuck, of YouTube fame

OMG. Chuck, I was not expecting this.
My wife called me in last night around 6, " Mike, you gotta see this, LOOK! it's you! This guy is just like you! " Once you started the "croppie flop" and the "please gods" I started to lose it..I couldn't watch it. She scrolled down at other videos and I could still hear you. She's heard that for the last ten years, and knows it well...But for me, dude, I don't know how to explain it,. I'm gonna call you today Chuck. Wait till wife hears about this, lol, she will want your autograph.

Good lord Mac -- don't encourge the old goat by asking for his autograph -- we'll never be able to live with him!!! ::) ::) And for goodness sakes don't let him send you the photo of him in his pink thong.... Trust me YOU ARE NOT READY FOR THAT!

Hugs BD :-*

Don't feel unmanly about crying when you found the site!  I promise you when you first meet another clusterhead in person you will cry, and they probably will too!  Then on Sunday when you leave the convention you will cry again.  How do I know?  I haven't made a convention yet, but have gotten to three meet and greets.  The first one I drove three hours for 45 minuste with these crazy and wonderful people.  Thomas was the first one I met, and I thought he was going to break my ribs with the hug he gave me.  He was crying, and I was crying, and my wife was looking at me like she couldn't believe what was happening to me!  I cried most of the way home that afternoon, and everytime i logged on and saw the pics people posted of the gathering, and every time I looked at the pics I took tht day.  

I had to miss the next three years get togethers due to work, but refused to miss the last two years meets.  Guess what, I cried again.  There is just a bond whe you meet someone else that UNDERSTANDS what you are going through, that will share their oxygen, trex, or just their love if you get hit while with them.  They don't look at you like youjust grew a third eye, and if you want to just sit and ride out a lower level hit like I did, because I just didn't want to miss any of the time I had with them, they will just leave you alone, or offer ice, etc., but they will ACCEPT you for who you are.

Looking forward to meeting you in St Louis.

Jerry