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New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> How many of us are women in the 40s
(Message started by: ellenjoanne2003 on Jul 17th, 2005, 12:33am)

Title: How many of us are women in the 40s
Post by ellenjoanne2003 on Jul 17th, 2005, 12:33am
I have a question.  From what I've read, and what my doctor told me.  Most cluster headache sufferers are men.  Those of us who are women, typically don't begin to suffer from cluster headaches, until they are in their 60s.

I'm a 41 year old woman, and I've suffered from cluster headaches for the past 5 1/2 years.  What are the percentages for women who suffer from these at my age (I first got them at age 36)?  Also, are there any in this group, or am I just an oddity?

Ellen

Title: Re: How many of us are women in the 40s
Post by Kevin_M on Jul 17th, 2005, 1:03am

on 07/17/05 at 00:33:44, ellenjoanne2003 wrote:
I have a question.  From what I've read, and what my doctor told me.  Most cluster headache sufferers are men.  Those of us who are women, typically don't begin to suffer from cluster headaches, until they are in their 60s.

You'll find that the men thing is old information, and the "not until the 60's" well contradicted on this board.


Quote:
I'm a 41 year old woman, and I've suffered from cluster headaches for the past 5 1/2 years.  What are the percentages for women who suffer from these at my age (I first got them at age 36)?  Also, are there any in this group, or am I just an oddity?

Oddity having clusters, yes.  On this board, no.  
 Don't be surprised at the variety of ages that CH affects women, or anyone.  When it comes, it comes, no age requirement.

Glad you're more prepared now.  Welcome.  Pull up a chair.


Kevin M



Title: Re: How many of us are women in the 40s
Post by RichardN on Jul 17th, 2005, 1:10am
Hi Ellenjoanne and Welcome

 Boy are you getting ready to meet some other "oddities" . . . . that's my guess anyway.  It's my guess that as doctors become more familiar with CH and more women are (properly) diagnosed, the percentage will come closer to 50/50.  

  Came close to walking out of a doctor's office a 15 mos ago (NOT a ha specialist) when after seeing cluster headaches on my chart replied, "oh, it's very rare for men to have clusters" . . . . . that's the only time I've heard THAT.  He has proved to be excellent in his specialty, and will know a lot more about clusters before I leave his care.

  Be Safe,   PFDANs


       Richard

Title: Re: How many of us are women in the 40s
Post by don on Jul 17th, 2005, 7:39am
Only on week ends.

Title: Re: How many of us are women in the 40s
Post by Kim Y. on Jul 17th, 2005, 1:49pm
27 yof :-/ & might be chronic, 8 mo. now. :'(

Title: Re: How many of us are women in the 40s
Post by GlendaB on Jul 17th, 2005, 4:27pm
42 yof, had clusters since I was 16.  

Title: Re: How many of us are women in the 40s
Post by Kiwiinoz58 on Jul 17th, 2005, 4:44pm
Methinks noone here is an oddity because none of us follows any "rules" soooooo we all fit in real well ;;D  
I'm female, 58, had classic migrains since 14 yrs old and got the first CH 15 mths ago.
Cheers,
Jacqs

Title: Re: How many of us are women in the 40s
Post by Kris_in_SJ on Jul 17th, 2005, 9:00pm
Hi Ellen,

Welcome to the family!  Things are a little quiet this weekend because of the big cluster convention.  Otherwise, you'd probably get a long earful of great histories and advice.

I can tell you, that I never had a headache in my life (except those minor tension things) until I turned 41.  

That's when I had my first cycle.  I was convinced I had a brain tumor, but went 10 weeks without a diagnosis from my opthamologist, neurologist and GP.  I was PF for 4 years when the second cycle hit at the age of 45.  Once again ... GP to neurologist ... MRI, CAT Scans all negative.  The magic answer and the ultimate diagnosis came from my headache diary and an immediate, positive response from Imitriex injections.  The neurologist called them "premenopausal cluster migraines."  My own research uncovered the fact that there is NO SUCH THING!  I had Cluster Headache Syndrome!

I guess I was so happy to have a diagnosis, I had no idea I should be upset by having cluster syndrome.

3 more PF years and I got hit with my third cycle last year.  However, I had been reading and researching and convinced my GP to work with me.  High dose Verapamil, a Prednisone taper and Trex injections kept my cycle to a bearable 6 weeks.  I'm still reading, collecting info on standard and alternative treatments and will be ready to face the next cycle when it comes.

This is a very long way to say .... "Yes - women do get clusters, and Yes - they can start in your 40's.

This is a great place to learn and receive support - as well as give it.  Please PM or email anytime you need to.  The light is always on.

Hugs,

Kris  

Title: Re: How many of us are women in the 40s
Post by ellenjoanne2003 on Jul 28th, 2005, 10:37pm
Thanks for the kind words.  :)  I don't feel so alone now.  I'm sorry I took so long to reply, I've been kind of busy.

My last major attack was on the night of July 4 (a kip 10 that lasted for 3 hours, and made me cry like a baby).  I saw my doctor (a board certified headache specialist, who has treated other cluster sufferers) on July 7.  The Melatonin, and Verapamil really made a difference.  I have only had 3 or 4 minor attacks (about kip 5 or less), that easily controllable with over the counter migraine pain relievers.  The nice thing, is that I haven't had any  attacks at night (don't you just love the way they wake you up out of a sound sleep?).  The last attack was about 1 1/2 weeks ago.  I think I'm done with this episode (it lasted about 5 weeks).  I hope I don't have to deal with my usual November episode since I had one this summer (which was the case,when I last had a summertime episode [in 2000]).

Hugs,
Ellen

Title: Re: How many of us are women in the 40s
Post by kimmeesue on Jul 29th, 2005, 2:50am
47 yo female...first episode age 25...lasted three months.  Didn't return for15 years then remained episodic for about 4 years...have been chronic for three years now.
You are most definitely not alone.
Kim

Title: Re: How many of us are women in the 40s
Post by brainfreeze on Jul 29th, 2005, 1:27pm
I'm 43 and was diagnosed when I was 27.  It was chronic for 1 year and now is episodic.  I heard about the men/women ratio thing too.  And it took some time to convince my neuro I am a women with these.  Now he just shakes his head in utter disbelief.

Title: Re: How many of us are women in the 40s
Post by Sandy_C on Jul 29th, 2005, 3:14pm
Im 59 year old female with first Ch bout in 1999, at the ripe old age of  54.  I think I could be classified as one of those "oddities".   :-/

Title: Re: How many of us are women in the 40s
Post by Kirk on Jul 30th, 2005, 2:56am
None of the wonderful supportive women I have met on this board in the last six years are oddities.
Pretty damned weired sometimes but not any odder than the rest of us [smiley=smokin.gif]
Please stick around they are wonderfull help. [smiley=smug.gif]

Title: Re: How many of us are women in the 40s
Post by Smurf on Aug 15th, 2005, 5:04pm
[/b]
on 07/17/05 at 13:49:10, Kim Y. wrote:
27 yof :-/ & might be chronic, 8 mo. now. :'(

Hey Kim,
I'm 43 and the CH's started when I was 23. About 15 years ago, I did have one dr say it was [b]
[/i]IMPOSSIBLE[i] for me to have clusters, because I was a woman (I laughed at her, told her she shouldn't be a dr and walked out without paying the bill).

Just the other day, my NEW neuro said it was rare for women, but I was one of the minority.  I told him to brush up on his info and to check this site out (if he knows what a computer is)  I DO also suffer migraines once in a while, but I can usually stop them ahead of time because I get the "aura" or squiggly vision.  Migraines are way different - yes they hurt - but they are waaaaay different than CH).  I'd take a 3-day migraine over a cluster cycle anyday, but that's just me knowing how they both feel.  So, in summation:

BS on the over 60 crap.
BS on the men more than women crap.  My Mom is 72 and has had these all her adult life, as did her Dad.  I think it is more genetic than anything.  I heard mostly Western European and Americans (because a lot of us came from Western Europeans).  I, for example, am 100% Irish descent.

P.S.  I've never had children, and had to have a histerectemy last year because of fibroid tumors - Thank God I don't have those cramps with the clusters like I use to - wow that was bad!!!!
Sorry so long - had to vent a little I guess - whew feel better.
Smurf

Title: Re: How many of us are women in the 40s
Post by Sandy_C on Aug 15th, 2005, 6:52pm
59 year old female, first cluster episode at 53.  Go figure.   :-/

Title: Re: How many of us are women in the 40s
Post by Robyn on Aug 20th, 2005, 4:44am
:-/  I am 43 and have been getting episodic CH for about 10 years.   I have learn't not to worry to much about statistics.  My daughter has a disability and we were told that 5% of children suffer from it and 1% of that 5% are girls.  My daughter just reckons that our ancestors gave us bad genes.  We have decided that we are not statistics we are just us!! :D

Title: Re: How many of us are women in the 40s
Post by Kiwiinoz58 on Aug 20th, 2005, 6:51pm
I'm 58, joined the CH ranks 18 months ago and was chronic straight up.
"We are not alone" is the truest statement, just look at all of us  oddities on here ;;D
Cheers,
Jacqs

Title: Re: How many of us are women in the 40s
Post by nani on Aug 20th, 2005, 7:32pm
My first episode was at age 16 (2 weeks post-partum). Episodic until age 42 (entering peri-menopause). Have been chronic since (5years). I have no idea whether hormone fluctuations were of any influence.  [smiley=huh.gif]
I know that I'm hypothalmically (sp?) impaired.  :-/

Title: Re: How many of us are women in the 40s
Post by Redd715 on Aug 21st, 2005, 11:04am
40 yof

chronic since this began at least 15 years ago or longer.

odd?  I guess some would say yeah to that [smiley=laugh.gif] [smiley=laugh.gif]



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