I read that only about 4% of CH sufferers are over 50. Being 52 and just coming off cycle of 3 weeks with severe attacks every night, I'm wondering if I'm nearing the end of this crap. Are there any other over 50s out there that have seen declines or complete remissions? This was the first episode I've had in 2 years. Up untill now it has been a yearly affair. Just hoping for something positive about getting older.
Thanks

Hello Robert,

I was told a few years ago that I would eventually grow out of this.  I thought I did.  Six years remission and out of the blue.......whammo.  I'm 62.

However, I will say that this cycle was much easier than what I remember.

Good Luck To Ya
          JPC

Not sure what the actual percentages are but we got a lot of over 50'er's here. About to hit 49, and like you, I'm hoping to outgrow them! Some do, some don't, but we are the eternally optimistic bunch!

Joe

Hi Robert... I'm 53 and chronic. So far they seem to be getting worse each year. There is one huge difference between having them this year and when I first got them. I know what they are and I am armed with o2 and a great support group.

with warm regards,
Tony

Robert,
I am 54 and started getting CH's in my early 30's.
They are not nearly as severe and I do use any medications or oxygen. The length of the attack has dramatically reduced as well so I hope for your sake they decrease for you as well over time.
How I batlle them now is by breathing deep and consistant when I feel one coming on and if it doesn't abort I then use heat or cold applied to my sinus and neck area under my right ear.
Hang in there pal, I wish you the best.
Jim  

Hope that information is right. I am just about to make 58 and I have been yearly episodic for about 15 years. This cycle is 2nd time in 12 months.
Pain is the same (usually up to 8) but I know it better.
My best times so far in remission terms was my late teens, 20s, and most of my 30s.
It would be nice to think I've done my 'time' with clusters but one thing is for certain; unpredictability!

I hope there is a cure or safe treatment in the not too distant future and freedom from pain for us all.

Ellick.

Ellick wrote on Jan 22^nd, 2009 at 1:47pm:

I hope there is a cure or safe treatment in the not too distant future and freedom from pain for us all. Ellick.

I'll second that hope.

I'm WAAAY over 50 (shut up Chuckles!) and am chronic. I really don't think this bastard plays favorites with ages...

Hugs BD

Nope!  Not gonna make ANY comments about some of the old geezers that already answered this thread .... Nope ... Ain't agonna do it ...  Ain't even gonna comment on how BarbaraD was the one that instructed Eve to give Adam the apple ... Nope ... Won't do it ...

I am damn close to 60 ... my clusters have gotten worse since I hit 50 ...  The last few years have been the worst in all the 30 years I have been dealing with the beast ...

BUT, once I grow up, they should get better ...

Chuck

55 here and been chronic for about  12 years. My hits did get worse when I hit about 50, but now I understand how to use O2 and never have to endure the bad hits. (Maybe they didn't get worse, it could just be getting less tough!)

Marc

I am 49, this would be a great birthday gift. Hope it's true.

58 y/o here.

I was yearly until I hit 40 y/o then they jumped to every other year.  Last remission was over 3 years but the cycle lasted 5 months, up from 6 weeks in the past.

So, I get longer remissions and longer cycles.

I'm 55.  I've had episodic CH since I was 13.

As time has passed, the cycles (which remain about the same duration) have gotten farther and farther apart--from twice yearly, to once every three years.

Best,

George  

I'm 53 and still get 6 month long cycles. Still get Kip-10's but I have learned to abort many more than in the past.

My remissions have gotten shorter instead of longer. I hope that changes. Good luck to you.

Don

Thanks to all for the replys. Not what I wanted to hear but it's nice to know I'm not alone. I've had yearly episodes since I was about 30 but it took finally seeing a neurologist when I was 45 or so to diagnose properly. My first Imiterx injection was like gift from God. O2 helps but I need the right setup. I will see about getting a tank and the right mask before the beast returns. Looking back, I don't know how I made it through all those years dealing with this with no meds besides tylenol and antibiotics for a sinus infection. It's a miracle I didn't blow my brains out. Thank god I finally found a good doc and this website. God bless you all.
Robert

I was chronic for 31 years, went episodic for a short while and then the beast left almost two years ago.

Im 46 years old.....Go figure!

I had my first ever cycle about 1 ¹/₂ months before I turned 50 & then went 5 years without anything before getting another cycle & going chronic; I just turned 60, so if they go away with age then I'm going to have to live a long time to test out the theory.

I'm much like Chuck, I may have grown old I just never grew up. ;)

Cheers
Barry

Barry_T_Coles wrote on Jan 23^rd, 2009 at 10:06pm:

I may have grown old I just never grew up.

Barry, why on earth would we want to do that?

Although, one of these days, I suppose I should sit down and figure out what I am going to be, when I grow up ... ... ... ... NAH !!!  Got plenty of time to make that decision!

PeterPanChuck

Blue_eyes wrote on Jan 22^nd, 2009 at 5:53pm:

I am 49, this would be a great birthday gift. Hope it's true.

For my 50th birthday, I found the thread here about Testosterone therapy "Why don't we pay attention to this"....best birthday gift ever.....still i pray and keep my fingers crossed one day at a time!




Paul

Robert: Truly, there's no rhyme nor reason to this business. I'm 55 and, like some others, thought it was all behind me after going 4 years without a true cycle after maybe 20 years of regular ones. Then I got hit last May with the hardest and longest bout I can remember. My neurologist told me that age is not a factor, that he had other patients in their 60s and 70s still dealing with this shit... oh goodie.

Hang in there!
David

I'am 53 this year, still going strong, It'll make it 41 years.

Prof Goadsby, said he'd observed a 90year old having an attack !

Stay strong. Andrew.  

Add my hubby to the over 50 crowd, still clustering.  Mike is 51 and he's in cycle right now.  As many have said, remissions do get longer - Mike's longest was 3 years but this last one was only 9 months so...who friggin knows?

He handles them a lot better now, thanks to this board and the discovery of oxygen and zomig nasal spray (thanks, Jonny  :-*).  I think now that he knows what he's dealing with and it's not going to kill him, his "clustertude" is a lot more patient overall and THAT's been huge in survival.  This cycle started out quite mild but, exposure to mold and dust last week really caused things to escalate over the weekend for him.  

Sorry, not what you're wanting to hear, I know - we've all held out hope for 50 but...can't prove the theory here.  

edited to add:  Mike's first cluster cycle was established in his early 20's although he does remember a few rogue attacks prior to that, starting at age 8 and we think his father may have been a clusterhead, too, although never diagnosed.

andrewjb wrote on Jan 26^th, 2009 at 3:18pm:

I'am 53 this year, still going strong, It'll make it 41 years. Prof Goadsby, said he'd observed a 90year old having an attack ! Stay strong. Andrew.

Holy crap Andrew, they started when you were 12??  Are you chronic or episodic?

:), Episodic. Thankfuly, i guess. Andrew.

andrewjb wrote on Jan 26^th, 2009 at 3:42pm:

Thankfuly, i guess.

Ooo, I hear you there! ;)  So how long are your remissions and have they lengthened at all?

I like to think i'am in constant remission !, Except mid october for six weeks, give or take.

i started last january @ the age of 50....................my dad also started @ 50, he is 74 & still gets a cycle a year, with a year skipping here & there.....................

  I forget how much over 50 I am. But I'm chronic. The Topamax helps stave them off, and the O2 kills the ones that get through. I like to think they have become less intense over the years. But its hard to remember sometimes.
[smiley=smokin.gif]

Kirk wrote on Jan 30^th, 2009 at 4:19pm:

I forget how much over 50 I am.

There are some of us that KNOW how far you are over 50 ...

Let me just say you are WAY over 50 ...

Chuck, who is MUCH younger

Just Plain Carl wrote on Jan 22^nd, 2009 at 12:37pm:

Hello Robert, I was told a few years ago that I would eventually grow out of this.  I thought I did.  Six years remission and out of the blue.......whammo.  I'm 62. However, I will say that this cycle was much easier than what I remember. Good Luck To Ya           JPC

Except for the length of remission, mine was 8 years, JPC's message could have been written by me. This cluster started about 6 weeks ago. If history means anything this cluster should be over in a couple of more weeks.

I'll be 62 in March.  Is there such a thing as episodic chronic? . . . or chronic episodic?  This is a weird beast.

I'm a head-trauma CHer and my attacks didn't start until I hit my head (about 3" above my right eyebrow) 1/01 . . . ha's started . . . no relief til my wife found this site 13 months later.

I still fit the definition of chronic as I understand it (never more than two weeks PF without meds), but mostly PF last few months.  Last year, they ramped up in frequency/intensity just before xmas and continued through May, then slacked-up.  The year before, they ramped before Thanksgiving and continued on a regular basis through at least April.

It's almost February and the "bad" cycle hasn't started yet . . . couple of small hits, but no "dancing".  I'm ready and looking at 12 full "E" tanks (just swapped an empty last night).

I avoid my triggers and kill what hits I do get with the 02.  Very grateful not getting multiple daily hits (at this time anyway).

Wondering if there's any info re early-onset CH and head-trauma CHers (I think I read 16-20%) and remission.  

Whatever the reason, I'm very grateful for this mostly PF time.

 Be Safe,   PFDANs

   Richard