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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> There may be hope...
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Message started by Bill Wheeler on Apr 25th, 2012 at 4:14pm

Title: There may be hope...
Post by Bill Wheeler on Apr 25th, 2012 at 4:14pm
Hi, my name is Bill and I just found this site. I suffered from CH starting at age 20. I would have episodes every July and December, each lasting approx 6 weeks. I would get 3 to 6 attacks per day, and they were always brutal. I was finally diagnosed with CH when I was 35 years old and prescribed Cafergot. All that did was make my legs ache but the CH's stll came so I gave up on that treatment. Suddenly at age 42 and for the next three years the episodes only came once a year in July. After the July episode at age 45 I went two years with no CH's. At age 47 in July I had another episode and this time I tried Oxygen which seemed to work really well. I then went four years until the next episode which was in July 1999. I had no Oxygen, but this episode only seemed to last about three weeks. Since my last CH in July 1999 I have not had another episode. I am currently 64.

A Doctor once told me that the CH's would decrease with age. I didn't believe him, but in my case I guess he was right.

I have nothing but sympathy for all that suffer and I hope you lose them like I have.

One thing I am curious about. When I was having an episode I always seemed to intuitively know when I was having the last headache of that episode. Has anyone else experienced this phenomenon?

Title: Re: There may be hope...
Post by Brew on Apr 25th, 2012 at 4:23pm
Sometimes they do.

Sometimes they don't.

Title: Re: There may be hope...
Post by Linda_Howell on Apr 25th, 2012 at 6:18pm
A friend of ours here still had them when he died in his 70's.  Others, like Charlie just had his stop at a certain point.  Hence Bill's..."sometimes they do and sometimes they don't."

One thing about this condition of ours, it never seems to have a concrete pattern to it.  Meds we take that work for a long time..stop working.  What works for some, doesn't for others.  I could go on with examples, but I think you get what I'm trying to convey.

Title: Re: There may be hope...
Post by Jimi on Apr 25th, 2012 at 11:35pm
Good Lord...I felt like I was reading about my story. I too started at age 20 and the first thing that I was put on was cafergot 4 years later. The rest of the story is about the same except I had my last one in 2000 and I am now 63. I am hoping we both are right and we are 2 of the lucky ones who have finally "outgrown them". :)

edit to add.....My last two cycles were both longer than normal with the last one lasting 6 months.

Title: Re: There may be hope...
Post by AussieBrian on Apr 26th, 2012 at 7:04am
Knowing instinctively it's the last one of a cycle, Bill?  I'm dinkum with you on that.  For me it's commonly a serious K8 or better but it sings, ever so sweetly, as my knees buckle. At the risk of offending against our standard of conduct, I'd honestly describe it as orgasmic but I  know it's my last attack and I can be a people again.

It's posts like yours that give us hope,old mate, and I look forward to sharing a beer with you.


Title: Re: There may be hope...
Post by Guiseppi on Apr 26th, 2012 at 9:53am
At the risk of offending against our standard of conduct, I'd honestly describe it as orgasmic

Don't make me lock you Brian! >:(

Welcome to the board Bill, I was told the same thing in my 20's, I MIGHT outgrow them. Just turned 52, had my last cycle almost 2 years ago. Crossing my fingers and hoping I've joined you and Jimi as "outgrowing" them. Unlike you and Brian, I'm the fade in fade out type, the headaches just keep getting milder and milder until I realize it's been a week or more since my last hit, then i know the cycle is done. Funny how different we all are.

Joe

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