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New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> new member, long time sufferer
(Message started by: Jimbo64 on Feb 23rd, 2004, 6:10am)

Title: new member, long time sufferer
Post by Jimbo64 on Feb 23rd, 2004, 6:10am
I registered here back in 02, I think I posted about my first headache, but not sure.

Anyway, just felt like rambling for a while about my thoughts as I deal with a headache. This one I can live with, its not a "head bangers ball" here yet.

I read one persons thoughts on barometric pressure, I feel the same way. My cycle is worst during fall/winter time, and really seems worse now that I live in Michigan where we have real seasons. When I lived in California I had less of the k5-k6 stuff, most headaches went straight to the k8-k10 monsters.

The weather changes have been crazy this year, and so have my headaches. Seems like there is a slight connection, although I do get em at random times throughout the year as well.

My headaches seem to hit different than the norm, since mine dont always go past a 5 or 6. and I'd swear I know when they will get better or worse.

Mine are on the left, and I'm left handed, I"ve wondered over the years if thats why.

I do know one thing, starting a new health care plan, and that means a new doctor, which means a new set of headaches! This new doctor says he knows about them, but we shall see in 2 weeks.

Well, thanks for letting me bend your ears,

Keep the faith...

Jimbo

Title: Re: new member, long time sufferer
Post by rob_d on Feb 23rd, 2004, 9:59am
I agree Jimbo- I have had CH at all times during the year but I am sure they are most prevelant during a heavy snowfall. (I live in Toronto.)

I have been very lucky this cycle- it has been 1 month now and only 1 full blown k9- the rest have been 5's and only 6 or 7 where I have to be alone.

I am inclined to hope the worst is over, but we all know there is no rhyme nor reason with these monsters.

Title: Re: new member, long time sufferer
Post by thomas on Feb 23rd, 2004, 4:14pm

on 02/23/04 at 06:10:41, Jimbo64 wrote:
Mine are on the left, and I'm left handed, I"ve wondered over the years if thats why.

That's not it.......... but hey, welcome back ;;D

Title: Re: new member, long time sufferer
Post by stuey on Feb 24th, 2004, 3:46pm
Welcome again, but I'm right handed and get hit on the left side, so that definitely aint it.  Stuey

Title: Re: new member, long time sufferer
Post by Charlie on Feb 24th, 2004, 5:41pm
Welcome back aboard. No to right or left-handedness but yes to weather......at least to some degree. Pressure, times of year and all that.

Lots of good ideas here and keep looking around.

Here are a couple links that may be helpful. The first being a technique that worked for me:

http://www.netsync.net/~charlies/

This one is a letter written by a fellow cluster headache sufferer that is the best of its kind to help explain these attacks to families, friends and employers. Its author encourages copying. It’s well worth it:

"http://www.ouch-uk.org/ch/note_colleagues.cfm"

Good luck and let us know how you're getting along.

Charlie






Title: Re: new member, long time sufferer
Post by Belle on Feb 24th, 2004, 6:22pm
Hey there and welcome to the site again.  I agree with the season thing too and I as well get them at other times but  my first cycle hit when I went on a family trip to Florida in December.  Freezing temps here and nice hot days there.  The cycle ended when I came back to the snow.  Sorry to see that you had to come back but I hope you'll stay and let us know how things are going.

Belle
::)

Title: Re: new member, long time sufferer
Post by Jimbo64 on Feb 25th, 2004, 11:14am
I guess I should tell a little more about myself.

I'm 39 now, and I got my first headache when I was 22. Pain wasnt something new to me, I'd been hit by a car when I was a kid, and regularly crashed on my BMX bicycle. finally shattering my collar bone, and going thru some serious pain for months while they minipulated bone parts back into place.

So when that first cluster headache hit, (K10) I truly thought I was going to die. I'd been married about 2 months, and my 7 year old, brand new step daughter was the only one there with me.

She called 911 (which was still fairly new, and not real smooth working with the large size of LA) they said someone would be there soon. She then called my wife, who made it home in about 5 minutes I'd guess, and we were at Ceders ER in less than 10 minutes.

Ten minutes or so after arriving there, the headache vanished, almost as fast as it arrived, and I think at that moment, for the first time I saw the fragility of life. Because I truly felt like I was going to die. But anyway, after the wonderful trip thru the donut, and getting to see pretty pictures of my brain, I was told I wouldnt die of an anurism (SP?) that it was most likely a migraine. I was given a miniature manilla envelope with 4 tylenol with codein, and instructed to see my family doctor.

My family doctor gave me the whole run down on migraines, and since my mother suffered from them, I knew they could last for long periods of time. At that moment I felt lost, I knew my headache only lasted 1/2 an hour or so, and couldnt imagine how anyone could deal with that level of pain for extended lengths of time.

Needless to say my next headache hit within 72 hours of the first, and again only lasted about 20 minutes or so. After 2 weeks of this random attack on my brain, I realized I wasnt going to die, just suffer alot. At that time I worked for myself, so it didnt have a drastic effect on my job, but it turn me into a home body for a while.

I'm the oldest of 7 kids, in a tight knit family, so when my younger brother told me his best friends dad wanted to meet with me, (A brain surgeon) I jumped at the chance. He was the first to mention "Cluster headaches" to me. I was then put in touch with a doctor at UCLA Med Center, who ultimately diagnosed my headaches as clusters. The clincher for him was the way I described the pain. I told him it felt like a steel spike had been driven thru my upper left eyelid and out the back of my head.

Still to this day that steel spike image lives in my head, although now, its chrome, smooth and shiny like a mirror, and razor sharp on the tip.

About two months after my first headache, they vanished. about 8 months later, after moving south to San Marcos California, they hit again, and the beast then showed me more of his nasty little tricks. (K1-K8)
Again they vanished 2 months later. but this time they waited almost 2 years before they struck again. By that time I had moved to Michigan.

Thats when I learned just how hard this condition could be. They came at random times thruout the year, never waiting longer than a month or so, before punishing me again. Thats when I first tried Imitrex(SP?). but after weighing the limited amounts you could use in a set amount of time, and the side effects I had, I gave up on it, and chose to look for other options. (Other than the walks, the trips to the basement to beat on old bags of clothes, and banging my head on the cinderblock walls) Oxygen works if I catch it soon enough, but havent been able to afford it in over a year.

In closing, I'll say this, for the first time since that first headache, I feel ok telling my story. Anywhere else this would seem like a plea for pity, and we know that isnt the case. I just learned early on that everyone you tell about your CH's, has had a headache worse then yours. (Uh huh, ya sure, tell me some more fairy tales)

So again, thanks for a great site.

C-ya, Jimbo.



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