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gardengal

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Age
Jul 21^st, 2011 at 9:59am

I've heard a few mention that clusters eventually go away with age. Is that true? Is there a cut off? I usually go 8 weeks. This time after 8 weeks I had a week of pain free, but got hit out of the blue, didn't have that "pressure" feeling in my head I ususally have the entire cycle, last Sunday and every night since. It's getting worse with age. I have been having bad regular migraine in between too. Totally different. Sad

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Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: Age Reply #1 - Jul 21^st, 2011 at 10:07am Two different time period and events here: There is a soft agreement that our total life time experience of Cluster seems to end around the 70s. But no hard science--just an educated guess. This is different from, how long does an individual's cycle last? Here then range is broad running from a few days to the chronic's experience.
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Skyhawk5 CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1320 Ypsilanti, Mi. USA Gender:	Re: Age Reply #2 - Jul 21^st, 2011 at 9:43pm I sure long for that age, until then, fight the good fight. Don
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leftyjones

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Re: Age
Reply #3 - Jul 23^rd, 2011 at 8:53pm

Hi, I'm new here. I don't know about 70, the last time I did any reading on the subject, admittedly many many years ago, it seemed like it was supposed to be about the age of 50. It was 51 for me, that was ten years ago. I've been free of them since that time.

I was thinking about this the other day, how much this has affected my life. I don't recall exactly when they started as a child. I remember banging my head on the floor about the age of 10-11. A friend of mine was over, thought it was pretty funny.

The worst part was never the pain. I got used to that. The worst part was the exhaustion from lack of sleep. How much of my social isolation and lack of social skills is the result of having this problem I don't really know. I suspect quite a bit.

I think of myself as being about ten years old because the first 51 years of my life was really only half a life.

I never tried immitrex or oxygen. The only way I could ever get any relief was to soak a washcloth in ice-water and apply that to my right eye.

I thought I would leave this post to let you know that likely it will come to an end at some point. I think life is wonderful, I always thought that but now I can see what I was missing. Everyone has a narrative, some story they tell about themselves to themselves in private. My story about myself is that I am a survivor. Hope this helps a little.

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Batch

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Re: Age
Reply #4 - Jul 24^th, 2011 at 3:06am

The most definitive data on age of cluster headache sufferers comes from the CH Survey 1134 of us took in 2008.

The age data follows:

[5] What is your current age? Respondents: 1134

Age          #        %
<20          7 0.62 %
21-30    137 12.08 %
31-40    311 27.43 %
41-50    384 33.86 %
51-60    238 20.99 %
≥61          57 5.03 %

Total Responses 1134 100.00 %

We didn't slice the data fine enough or structure the questions to determine who was the oldest codger with CH... but the above numbers provide the best available age profile...

Take care,

V/R, Batch

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« Last Edit: Jul 24^th, 2011 at 3:09am by Batch »

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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Wendy1

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Re: Age
Reply #5 - Jul 24^th, 2011 at 6:32am

For me (having started ch about age 18) the only thing I have noticed in the past few yrs is the time between cycles... seems the older I get the longer the it is... I went 4 yrs (longest ever) between cycles. I would like them gone forever, but 4 yrs was quite a stretch for me... but it's here again, and I feel as though it was yesterday that I had them : (

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allnight9 CH.com Newbie Offline Posts: 14 x1\|pekin\|USA\|usa\|354\|138\|IL,Illinois Gender:	Re: Age Reply #6 - Jul 25^th, 2011 at 3:06am 1 year PF expecting a cycle anytime, but praying that 50 is the year (next year for me)
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wimsey1 CH.com Alumnus Offline I Love CH.com! Posts: 2457 MA Gender:	Re: Age Reply #7 - Jul 25^th, 2011 at 8:19am I think any year can be the magic year, but IU haven't come ti it yet. 35 years and going strong. And I became chronic to boot. I had also read somewhere, somewhen that these were rare after 55 or so. Well that just makes me a mitey rare bird I suppose. Still we can always pray that this be the year! Blessings. lance
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Guiseppi

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Re: Age
Reply #8 - Jul 25^th, 2011 at 9:04am

Batch's survey has provided a wealth of information for the CH archives....BUT.....(oh you knew there'd be a butt!!!)......my concern with the numbers of older people being so low....how much of that is the fact that age group is not as internet savvy as the 30-50 year olds? I have friends on the board who suddenly stopped getting CH in their 30's, early 50's and then some still going strong in their 60's!

The following is a line from Desiderata, which echoes the advice Bob usually gives on this topic:

Nurture strength of spirit to shield you in sudden misfortune.
But do not distress yourself with dark imaginings.
Many fears are born of fatigue and loneliness.

A fancy poetic way of saying worrying don't accomplish diddly, just makes your tummy hurt in addition to your head! Wink

Joe

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bejeeber

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Re: Age
Reply #9 - Jul 25^th, 2011 at 8:59pm

Wendy1 wrote on Jul 24^th, 2011 at 6:32am:

.... seems the older I get the longer the it is... I went 4 yrs (longest ever) between cycles.... (

The remissions becoming longer and longer appears to be quite common (but not guaranteed), and this has been the case with me at age 52 with 30+ years of CH.

Unfortunately the episodes themselves can become longer too. Mine started out at 1 month duration, now they last 2.5 months. Still a plenty fair trade for those nice lucky long remissions.

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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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Jimi CH.com Moderator CH.com Alumnus Offline Don't feed the moderators Posts: 4925 Madisonville, KY Gender:	Re: Age Reply #10 - Jul 25^th, 2011 at 11:09pm Mine followed that route as well. Remissions got longer and longer but cycles got longer as well. My last cycle lasted 6 mos and I was afraid I was going chronic. Then they stopped and that was 11 years ago. Still in remission after 31 years of clusters.
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Bob P CH.com Hall of Famer Offline Shut up Bob! Posts: 4573 Clio,California Gender:	Re: Age Reply #11 - Jul 26^th, 2011 at 7:32am Ditto Jimi's experience. My last cycle was 5 months long. That was at age 54, 6 years ago.
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George CH.com Moderator CH.com Alumnus Offline Black-Billed Magpie Posts: 8126 Boise, Idaho USA Gender:	Re: Age Reply #12 - Jul 26^th, 2011 at 8:56am The cycles have gotten farther apart as I've gotten older--from twice a year, to three years between on average. Still about the same in duration and intensity, however. 45 years and counting. You'd think I'd have better things to do. Best, George
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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: Age Reply #13 - Jul 26^th, 2011 at 9:01am You'd think I'd have better things to do. Yeah George, I'd be looking for a hobby! Joe
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dr.hetch CH.com Newbie Offline I love YaBB 1G - SP1! Posts: 4 x0\|Cairo\|Egypt\|\|0\|0\| Gender:	Re: Age Reply #14 - Jul 27^th, 2011 at 2:05am I am going to be 52 next month and i have a cycle that started 5 weeks ago , it is still strong and i experience about 3 attacks a day
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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: Age Reply #15 - Jul 27^th, 2011 at 7:26am Welcome to the board Hetch! Are you a medical doctor? Do you have an effective treatment regimen for your CH? Do you have oxygen? Glad you found us, hope you catch a short go round this cycle. Joe
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Granny Arizona

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Re: Age
Reply #16 - Jul 28^th, 2011 at 1:42am

My cluster headaches didn't start until I was about 69. I read that will happen with women especially... and you are more likely to go chronic if you get them later in life... I'll die with them. If not FROM them. I have an appointment with the Neuro first time tomorrow. I sent him my history and my HA diary... Wish me luck = I'm very nervous and suffering through a #8 tonight... afraid to go to bed

Love you all
Linda

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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: Age Reply #17 - Jul 28^th, 2011 at 9:00am Linda, I'm so hoping you have a GOOD experience with your neuro. Don't be afraid to let them know you've done research and know a little bit about them. Crossing our collective fingers! Joe
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QnHeartMM CH.com Sponsor Offline I AM a Phoenix! Posts: 1783 San Diego, CA Gender:	Re: Age Reply #18 - Jul 28^th, 2011 at 2:45pm Linda, echoing what Joe said, hope you have a good neuro appt today - let us know how it goes. Christy
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Barry_T_Coles CH.com Alumnus Offline Posts: 2073 Karratha\|,West_Australia Gender:	Re: Age Reply #19 - Jul 29^th, 2011 at 2:17am Like Linda mine didn't start till late in life. My first episode was just before I turned 50 & then had a five year break before they come back & then went chronic & been that way since, now 62 & not looking like loosing the sods. Cheers Barry
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anthony g

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Re: Age
Reply #20 - Jul 29^th, 2011 at 6:26am

gardengal wrote on Jul 21^st, 2011 at 9:59am:

I've heard a few mention that clusters eventually go away with age. Is that true? Is there a cut off? I usually go 8 weeks. This time after 8 weeks I had a week of pain free, but got hit out of the blue, didn't have that "pressure" feeling in my head I ususally have the entire cycle, last Sunday and every night since. It's getting worse with age. I have been having bad regular migraine in between too. Totally different. Sad

I have had pressure on my right side of my head (cluster side) evre since my cyle back in late Dec 09. It was my 3rd cycle ever I am 51 now. I had 11yrs between cyles before that.. I now have not had a "normal" feeling head since dec 09. I also get migraines in between so just to show the beast is so different from person to person.
blessing
Anthony

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Kenoman29

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Re: Age
Reply #21 - Jul 29^th, 2011 at 9:56am

I got my first CH at the age of 39. For 16 years they were more irratation than anything else. The imitrex spray worked fine and my cycle only lasted 2 weeks....once when going into spring, and once when going into fall.

I turned 55 in Sept. 2010, and then in Feb 2011 all hell broke loose. I got the full flat out attacks! The horrible agony, sleepless nights, you name it. Why after 16 years it went from mild to HELL I still dont know. My recent episode lasted from Feb. 20th to June 20th. The for 5 weeks I felt pretty damn good. Now, 2 days ago, the pressure in the eye, bridge of the nose, back of the head has come back. Needing the O2 again as well, with imitrex tabs and verapamil. All I got was a lousy 5 week break. Hoping maybe this episode wont be too bad. But only getting a 5 week break, does that mean I'm chronic???

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Guiseppi

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Re: Age
Reply #22 - Jul 29^th, 2011 at 10:38am

Maybe....or beasty is just morphing again. Gotta be his most annoying trait, just when you feel like you're in control and have it somewhat managed, he turns the tables on you. Angry

Dr. Goadsby spoke at the OUCH convention, they're still talking about changing the terminolgy from chronic and episodic to something different, and changing what the criteria is for each. I wouldn't sweat the chronic yet, just stay ready to put beasty in his place. Wink

Joe

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Kenoman29 CH.com Junior Offline I Love CH.com! Posts: 28	Re: Age Reply #23 - Jul 30^th, 2011 at 9:06am Thank you Joe.
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biscohead

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Re: Age
Reply #24 - Jul 31^st, 2011 at 11:10am

I am 35 years old...started getting CH when I was 19. At first...it was every 1.5 years between cycles. Then 2. And now, I have come back into my cycle 3 years since my last one. The pain seems to get worse with time...and the cycle seems to last a bit longer, but the fact that the time between cycles is increasing is the one thing that keeps me going through this. Hoping next time it's 4 years...then 5 years...then 6 years...and then I'll be 50 and hopefully done with this affliction. Until then...good luck all and hoping for more PF posts than the other kind...

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