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. :(

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.

I sure long for that age, until then, fight the good fight.

Don

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.

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

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 : (

1 year PF expecting a cycle anytime, but praying that 50 is the year (next year for me)

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

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! ;)

Joe

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.

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. :)

Ditto Jimi's experience.  My last cycle was 5 months long.  That was at age 54, 6 years ago.

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

You'd think I'd have better things to do.

Yeah George, I'd be looking for a hobby! ;D

Joe

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  >:(

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

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

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

Linda, echoing what Joe said, hope you have a good neuro appt today - let us know how it goes.

Christy

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

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. :(

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

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???

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. >:(

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. ;)

Joe

Thank you Joe.

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...

Started mine at age 34 took 2+ years for me to get diagnosed.  I'm currently 46 and I've been chronic since CH day 1.

My experience matches that of several others who have posted in this thread:  Longer periods of remission, but longer cycles, too.

Got my first one at 15; turned 51 this year.  Last cycle to date ended in May, 2010. 

To those new to the site and to clusters:  Don't give in or give up.  There are preventive strategies that can work, and abortive treatments, too.  See a good neurologist who knows about CH.

Dennis

JustNotRight wrote on Jul 31^st, 2011 at 4:44pm:

Started mine at age 34 took 2+ years for me to get diagnosed.  I'm currently 46 and I've been chronic since CH day 1.

I had my second cycle back in dec 09 at 49 and had not had a normal feeling right side (cluster side) of my head since. I am now 51 and was treated for hermicraina continua after my cycle back in dec 09 that lasted 4 months or so but now the indomethicin stopped working and back to cluster diagnosis. So the beast once again is different for all of us!! Guess u could say I am "chronic" since day 1 even if I  dont get the major headbanger's
PFW'S all
Anthony

55 here. Started at 40, went chronic at 48. Currently as bad as ever. Never thought I'd be in such a rush to see 70.

Welcome to the board Strat! I'm 51, not sure how big a rush I am to het 70, but I hear ya! ;)

Joe

Thanks very much Joe.