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Kim P

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Clinton MA

HI everyone
Sep 17^th, 2009 at 12:57am

Hi Everyone...

I have been visiting your site for a few years and finally thought I would register. Every time I am in a cycle this place provides me some sort of relief and breaks my heart all at once.

In a week, I will reach 20 years living through this hell. And in 10 days I turn 33...so I barely remember life before. What a lovely 13 birthday present!

I have been fortunate to meet a couple of people in life that have suffered with this pain and they are both free of it now. Have many of you heard that they just go away some day?

I am still waiting for the day I don't feel like I have to restart my life every 9-15 months...

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Racer1_NC

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Re: HI everyone
Reply #1 - Sep 17^th, 2009 at 1:16am

Welcome Kim.....

Yes.....for some they do just go away.

What meds have you tried? What works for you? What doesn't?

As for restarting life after a cycle.....around here, we tend to prefer not letting CH get in the way of life. Wink

You'll see a lot of O2 tanks at our gatherings.....take care of business......then back to what we were doing.

Glad you decided to register.....stick around....most of us aren't so bad. Grin

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“We see what we believe, not the other way around." — Varga

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McGee

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Re: HI everyone
Reply #2 - Sep 17^th, 2009 at 1:31am

Hi Kim P welcome to the asylum.
ive heard from others that they get a long period of PF times, lasting years, and one or two have said that as they got older that the attacks where not as often. i work on the theory be prepared for anything and enjoy the PF times.

wishing you and all of us ooodles and ooodles of PF days

mark (the optimist)

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Kim P

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Clinton MA

Re: HI everyone
Reply #3 - Sep 17^th, 2009 at 1:40am

What haven't I tried...when I was 15 or 16 my mom took me to the hospital after I tried to shove a screwdriver in my eye. They gave me demarol (sp) or something and all I remember was I still had a headache but I was too drugged to pace the floors or even rock...which was the only comfort I knew. That was the last time I let them give me a narcotic.

I use imitrex injectible, but I am fairly stingy with it and usual just ride it out. I have had troubles with most of the preventatives such as excessive weight loss and in once case my gums and skin started splitting and I was bleeding from nose (depakote).

I couldn't agree more about not letting it get in the way of life (although I will admit I am in what I usually call pity-party phase..but that passes). As long as I have a pair of sun glasses to keep people from staring, I go to work parties, school functions...

But as a working mother of 2, living on three hours sleep if I am lucky...things start to slip and then I have to put my perfectly organized lifestyle back together. Perhaps it wont seem so bad when I get to phase 5 - acceptance!

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Racer1_NC CH.com Moderator CH.com Alumnus Offline "Well, let's go see." Posts: 4417 Lewisville, NC Gender:	Re: HI everyone Reply #4 - Sep 17^th, 2009 at 1:43am Read about O2...you'll find a wealth of info by clicking on the link on the left side of this page. Many of us, including myself prefer high flow O2 as our primary abortive. Of course check with your doctor before starting or stopping any meds.
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: HI everyone Reply #5 - Sep 17^th, 2009 at 1:59am Welcome to the board, glad you decided to poke your head in! I'm almost 50, 30 plus years of CH, still hoping they'll just up and leave me! Do read the oxygen info, cheap, effective, fast....but do read the link as it must be used correctly to be effective. Joe
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Iddy CH.com Alumnus Offline Smile Posts: 486 Toronto,Canada Gender:	Re: HI everyone Reply #6 - Sep 17^th, 2009 at 5:02am Hi Kim, welcome aboard. What took you so long! All the best. Iddy
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Marc Ex Member Gender:	Re: HI everyone Reply #7 - Sep 17^th, 2009 at 9:24am Oxygen
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Kim P

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Clinton MA

Re: HI everyone
Reply #8 - Sep 17^th, 2009 at 7:53pm

I have to admit what took me so long was denial. Every year I come up with a new self-diagnosis of an underlying condition. And every year my neurologist gives me a sad little laugh and shake of the head and repeats that I have cluster headaches. I ran out of conditions and accepted the truth...

It is actually hysterical in retrospect. (At one point I was convinced I was actually a man...you should have seen the nuero's face at that one!)

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bejeeber

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Re: HI everyone
Reply #9 - Sep 18^th, 2009 at 1:06am

Hey Kim,

Well I know form personal experience that for some especially lucky types the cycles can come around much less often as the decades fling by.

After 29 years with CH my cycles have been getting so much farther apart that it was 7.5 years between the last cycle and this one (!!!!). Shocked

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Lafougere CH.com Newbie Offline Cluster busting enthusiast Posts: 7 Brussels, Belgium Gender:	Re: HI everyone Reply #10 - Sep 18^th, 2009 at 5:45am Kim P wrote on Sep 17^th, 2009 at 7:53pm: At one point I was convinced I was actually a man...you should have seen the nuero's face at that one) I'm also celebrating my twentieth year of CH this year. I'm lucky however as they only started at age 14 We're nearly CH twins
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