Hello to all CH survivors my name is Brett MacDonald, I am 47 now and been dancing since I was 17 and this is my story. In the early years the Beast rarely showed himself, after the first dance it was about 2-3 years (give or take a year) between concerts. I never bothered to discuss them with a Doctor as in my 47 year I may have seen a Doctor 20-30 times? not exactly sure, I felt uncomfortable going to a Doctor with a simple thing as a headache, even if they were this debilitating, they have plenty of really patients and back then they were few and far between. It has only been within the last 7-10 years that they have had made more then 1 visit per year and grown in severity. It was 5 years ago when I was actually diagnosed as having CH, not by a family Doctor but by 2 emergency ward Doctors. This was during one of the most intense concerts (in which I had my first blackout) They performed countless tests including 2 separate CT scans, a Lumbar puncture, and many body fluid tests, the first energ Doctor was near the beginning of the dance the second was near the end, that one lasted almost 2 months. Both recommended I visit a family Doctor, so I did, twice, the first visit he did nothing, took him 10 minutes to find my file on his computer ??? just sent me home told me to get some rest. The second visit was almost the same, he did no tests, said the emerg had done them all, and also that I was to old to have these kinds of headaches, but if I wanted to start a daily diary of them it would be a good idea, sorry I have never gone back to see him. Since then I have made 5 more visits to the emerg for O2 and a injection, only when I can't tolerate the dance any more. Due to the distance between visits in my early years I did not pay much attention to the symptoms or warnings, but since "The Band" has been making yearly ( sometimes 2-4) comebacks I have paid more attention to them. It starts with the "Shadow" dancing which can last from a few weeks to aprox 8 months, at which time the Beast can make an appearance at any given time ( I have yet to find any consistency in them time of day wise, only in the seasonally sense Fall/Winter the worst but he has made a few appearances in the Spring and Summer only in the last few years) During these shadow moments my sensitivity to bright lights, sharp high pitched sounds and strong perfumes is increased, at times any of these can set the stage for a concert. It normally comes as a screaming intense pain spike aprox 5 minutes after I encounter the trigger, either behind the right eye, on the right side around the ear or jaw or through the top of my head, these spikes last from aprox. 30 sec to a few mins. That is my warning the Beast is at the back stage door waiting for his intro, unless I can block it the concert begins 2-3 hours long with a few encores on special occasions.
This has been my story, I know I have probably missed a few points, symptoms or other information but it was not easy for me to tell my story. For aprox. 20 years I have been alone no one to talk to who understood or even believed what I was trying to tell them. It was always the same response "Its a headache Everyone gets them take a pill and suck it up" or "Ignore him he's just looking for attention" so I learned to keep it to myself and became a loner,no friends and only seeing family at Christmas (if they were lucky). Please feel free to question or comment on my story I look forward to any you may have.
I would like to thank all who are or were involved in creating this wondrous and informational site :
Mr. Daren Johnson its creator
TODD for the CH guide for new visitors
Mr. Bob Kipple for the Kip Scale
lc bob for the interview with the Devil ( I love it gives a whole new meaning to the phrase "He/She is dancing to the tune of a different drummer)

Well we're damned glad you found us! I promise, no one here will ever tell you to shut up and take an aspirin. :)

Been an exciting couple of years around here for developing new ideas to help with CH, and perfecting some old friends.

Go to the meds section, and check out the post "123 pain free days and i think  know why."

A simple over the counter, daily regimen that's been bringing a lot of relief to board members.

Check out getting home oxygen. One of the biggest keys to making oxygen work effectively is starting it up at the irst sign of an attack. I can abort an attack in as little as 6 minutes with oxygen. If I had to drive to the ER to get oxygen, the beasty would already be too firmly entrenched for the oxygen to help me much. Oxygen has REALLY been a game changer for many on the board, it's all but eliminated other abortives for me.

I'm 51, like you been dancing since my early teens. Since finding this board, getting home oxygen, and establishing a good preventative regimen, for me that's lithium, I honestly can't recall my last KIP 10  attack.

welcome home.

Joe

Hey BreMac!

Another 30+ year dancer here.

As you can see from Joe's post there's a lotta stuff that we can hit this beast back with, and hit him hard.

There's a groundswell of CH'ers (including myself) going the non toxic route since it can be as effective or more effective than drugs.

That said, if you ever do go to a doctor again, ordinarily a headache specialist would be the only type who would have a clue.

You've probably noticed how wildly popular O2 is around here for aborting attacks. We're talking high flow 100% O2 as outlined in the oxygen info link to the left.

The D3 regimen has recently made a splash indeed - here's some condensed info about it:
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The cluserbster approach can be a more effective preventative than any drug, and it has sent many a CH'er into full remission. I think this Newsweek article and this video talk make a good introduction to cluserbusters:

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Me thinks you've suffered aplenty BreMac - I'm very hopeful that if you take the info here and go at it proactively you'll get the 'ol life back.  :)

Hi Brett,

Dancing nearly 20 years, man time flies at a glacial pace when we're having fun....  ;) I've had fun , this ain't it. Near as I can remember... ;) "Suck it up" LOL... OK, you tell em' to trade places for a little while, might change there attitude...

No one understands us but us. Wouldn't wish this on anyone... Insidious little aliment... ;)

Welcome aboard, great asset here. I'll help when and where I can...

Interesting group of folks... Bunch of tough son of a gun's to say the least. Welcome, ya' don't even need a partner. We dance to the beat of a different drum, mores the pity....

Oxygen... let me repeat myself... High flow Oxygen... plus research all possibilities. Different for all of us, the Beast is creative, I'll give him that. That's about all I like to give him, OH, yeah and I won't give in... F'em I'm here to stay.

All the best,

Baer

B.Baer wrote on Oct 19^th, 2011 at 12:41am:

"Suck it up" LOL...

Actually that works really, really well with CH when it's high flow rate oxygen you're sucking on!

Mike NZ wrote on Oct 19^th, 2011 at 1:57am:

B.Baer wrote on Oct 19th, 2011 at 12:41am: "Suck it up" LOL... Actually that works really, really well with CH when it's high flow rate oxygen you're sucking on!

;D Our new CH Motto..."suck it up!"

Joe

Thank you all very much ;D I have recieved alot of info on the O2 and vitamin D regimen it all sounds so wonderful  :). Now to try and convince this Doctor  :-/, or try and find one around here that has worked with or understands CH. I have only read a few other stories and comment but not noticed does the O2 shut that.... drummer up? He is worse then the Energizer Bunny  >:(, the last few years he's been banging in the back ground almost all year long. Sometimes I can ignore him for a few days but he Always finds the volume control  :(

Guiseppi wrote on Oct 19^th, 2011 at 8:49am:

;D Our new CH Motto..."suck it up!"

I like it.  ;D

Got CH? SUCK IT UP! ...at 15 LPM or higher

;D [b]"Suck it up" [b] as the new CH motto, after doing alot of reading on O2 and the benefits from it I agree  ;D

BreMac wrote on Oct 19^th, 2011 at 9:45am:

I have only read a few other stories and comment but not noticed does the O2 shut that.... drummer up? He is worse then the Energizer Bunny  >:(, the last few years he's been banging in the back ground almost all year long. Sometimes I can ignore him for a few days but he Always finds the volume control  :(

Ummm...if you mean what I think you mean, you are describing something we tend to call shadows...which we are convinced are little tiny beasts trying to grow up into something a bit more scary. OK, a lot more scary. The best advice I received here was to treat them like full blown hits...and make them go away. I use a 16oz Monster (Red Bull, 5 hr energry...) and high flow O2 to chase them away before they grow up. They are not as painful as a full on KIP 9 but they sure are annoying and if I try to ignore them, they can bring on a real and true migraine. So hit them hard with all you got and don't let encourage them. God bless. lance

Ya I been drinking Red Bulls alot. I still looking for a new Doc. mine is ....(Momma always told me if u aln't got nothin nice to say then don't say anything :) ) my last visit to him he informed me that I was to old to have those kinds of headaches so go home write down everything for the next 6-8 weeks then come back. Not once did he even look at me sat there watching his computer, Well sry when u r in the middle of a 8-10 kip week u realy don't wanna be told go home and come back in 2 months. For now I just make periodic trips to the ER.

Might be time to find a doctor that specializes in this kind ob pain.

Carole's right, it's really hard to beat a headache specialist neurologist. Still no guarantee you'll get a CH knowledgeable doctor, but vastly improves your odds.

Joe