Hi    I am nearly 50 years of age. I have suffered from CH since age 20.   I have generally had 6 months cycles but seem to have moved to 2 year cycles.  Currently in a shadow period which has not yet moved into CH proper. The shadow period has been the longest ever - about 4 weeks now. Am on verapamil

Any thoughts- vague hope
whether any knows of any cases where :
CH declines with age
and whether there are any cases where it disappears completely

I've never seen a medical study which attempted to link age and CH re. decline with the years. Rarely, a passing comment about people aging out.

My experience has been shorter cycles starting about age 50s and now stopped at 73. The last attack was 3-yrs ago and the "cycle" stopped before I could get the Rx filled for an abortive.

Not sure this is an advantage, however, given that, with age, the flow of new stuff coming down the road at you increases!

I was in 8 to 9 month remissions for the first 20 years of CH.  At age 40 the remissions went to 2 years and got 3 months longer each cycle.  I am now 59 y/o and have been CH free for almost 5 years.  I do, at times, get sinus like headaches and pain in the back of my neck on the cluster side but no full blown clusters.
Enjoy the ride.

I had my first cluster cycle at age 38 and never had another until this past december which was 11 yrs later so there u go!! UNPREDICTABLE is what i say! :-/

I started with 1 or 2 cycles a year when I was 17 YO. I an 52 now and I have had 1 cycle in the last 6 years.

With the way this beast morphs, I can't rely on any expectations that my remission will increase as I get older.  My cycles have gotten shorter though and I still link that to the use of LSA.

Thanks so much for your replies.  New to the acronyms

Chad what is LSA and Bob J  what is Rx

LV,
Unpredictable for sure. I got my first cluster when I was 24.  I am now 56
Was chronic for many years. I changed to episodic for a few years, back to chronic for a few years before returning to episodic about 10 years ago.
I do think that they have gotten easier as I have gotten older. My theory is that the older I get the less flexible the veins and arteries are. The less flexible the veins the less the nerves wrapped around them get stretched and pulled during an attack. This theory is based only on hope. I have no supporting science to back it up, but it gives me something to fool myself with.

I've seen a few posts on this before. 

Unfortunately someone forget to fill my CH in on the rules.

Over 50 and still living with my constant but unwanted companion.

burnt-toast
(Tom)   

LV wrote on Jan 27^th, 2010 at 4:05pm:

Thanks so much for your replies.  New to the acronyms Chad what is LSA and Bob J  what is Rx

LSA = Lysergic Acid Amide (just read the link)
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Rx = Medical Prescription
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I too have found age making a difference.  Suffered two cycles a year from age 20 - dropped down to one a year - and now at age 67 have been in remission for 3 years in March.  Had an issue with a couple of hits last year but nothing that was not bearable.  Lord, there has to be some benefit, aside from pensions, to getting older!!

My dad aged out of his CH. He was late fifties when the beast left him. He never saw the beast again till his last months of cancer treatment.

I first started getting them 30 years ago at around age 21, having an episode every year.

Gradually the time between episodes started increasing, with a 7 year remission between my last bouts.

From what I've seen people report here so far, this appears to be a fairly common pattern.

[Edit] I should probably mention though that 5 years into that 7 year remission I had all the warning signs of an episode coming on, such as waking up with strong shadows. I took some RC seeds and all symptoms immediately stopped, then didn't return for 2 more years.

almost 59 cycles every year except last year. the year before I got 2 in 1 yr and then one ear off. back to visit this year.

I've had them for over 20 years and I'm approaching 50. Used to get them once or twice a year. As I get older I get longer remission between episodes. Had an episode in 2000, then in 2004, and now in 2010 - the longest remission I ever had.

On the down side, the episodes have been longer and more frustrating when I do get them. In 2004 I had 208 CH events over 3 months, peaking at more than 10 a day for a few weeks. This time I'm trying some new things that may be working, but a bit early to tell yet.

NovellRed wrote on Jan 27^th, 2010 at 4:40pm:

My theory is that the older I get the less flexible the veins and arteries are. The less flexible the veins the less the nerves wrapped around them get stretched and pulled during an attack. This theory is based only on hope. I have no supporting science to back it up, but it gives me something to fool myself with.

Same theory here....episodic...now chronic....NEVER thought I would wish for advancing age...NOW for several reasons....

Started at age 13.  Two cycles a year for twenty years, then one a year for ten years.  The last four cycles have each been three years apart.  I've always been episodic.

I'm 56 now.  Are they finished?  Maybe.  But I'm not betting on it.

Best,

George

Revolvr wrote on Jan 27^th, 2010 at 11:01pm:

On the down side, the episodes have been longer and more frustrating when I do get them.

Yep that has been my experience also even as my episodes are fewer and farther between.

Started at age 19 and got them annually.  Then, when I was about 29, I had a cycle every 18 months or so.  Now, at 40, I seem to have a two year remission between cycles.  I do find that my cycles seem to be a bit longer and the pain during the peak is more intense. 

LV,

You mentioned that you are on Verapamil.  I have had cycles where I have started the Verap before the cycle actually began.  I was able to get through the entire cycle with ONLY shadows.  Could this be what you are experiencing?

Jeannie

interesting because about the verap i am on it too and in cycle now (towards the end) but still on verap still having shadows which i hear is common yes? so maybe has something to do with it! just my 2 cents!

Grandma_Sweet_Boy wrote on Jan 27^th, 2010 at 7:49pm:

I too have found age making a difference.  Suffered two cycles a year from age 20 - dropped down to one a year - and now at age 67 have been in remission for 3 years in March.  Had an issue with a couple of hits last year but nothing that was not bearable.  Lord, there has to be some benefit, aside from pensions, to getting older!!

So that's why you never come to gatherings anymore. Guilt!

We forgive you. Just get your fannie down to Atlanta this summer.

Me... I went CHRONIC in my old age.. go figure... Guess I'm just one of lucky ones....  >:(

Brew wrote on Jan 28^th, 2010 at 2:25pm:

Grandma_Sweet_Boy wrote on Jan 27th, 2010 at 7:49pm: I too have found age making a difference.  Suffered two cycles a year from age 20 - dropped down to one a year - and now at age 67 have been in remission for 3 years in March.  Had an issue with a couple of hits last year but nothing that was not bearable.  Lord, there has to be some benefit, aside from pensions, to getting older!! So that's why you never come to gatherings anymore. Guilt! We forgive you. Just get your fannie down to Atlanta this summer.

Actually my bratty little friend  ;) I'm working on exactly that!  There are some people that I really want to see again and new folks that I want to meet!

Grandma_Sweet_Boy wrote on Jan 28^th, 2010 at 4:34pm:

Brew wrote on Jan 28th, 2010 at 2:25pm: Grandma_Sweet_Boy wrote on Jan 27th, 2010 at 7:49pm: I too have found age making a difference.  Suffered two cycles a year from age 20 - dropped down to one a year - and now at age 67 have been in remission for 3 years in March.  Had an issue with a couple of hits last year but nothing that was not bearable.  Lord, there has to be some benefit, aside from pensions, to getting older!! So that's why you never come to gatherings anymore. Guilt! We forgive you. Just get your fannie down to Atlanta this summer. Actually my bratty little friend  ;) I'm working on exactly that!  There are some people that I really want to see again and new folks that I want to meet!

Good. Get busy.

Quote:

almost 59 cycles every year

I suck at math but isn't that 59 six day cycles back to back ?

?????????????

I'm thinking missing comma...right saxman?

Started at age 29, with annual cycles, ~30 days in cycle.  Within a few years remissions became 21 months, still ~30 days in cycle, for about 15 years.  Now in my 50s I was looking forward to 'aging out'.  Next cycle came after 23 months (longer remission), which felt like the right direction.  Then another cycle started 3 months later. 

Go figure.  This one's an odd cycle too - 5 days of hits, 5 days off, more hits, then verapamil took control.

Fox

I've been suffering CH's for 30 yrs since I was 11 yrs old following a closed head injury.  My average remission is every other year, however have gone 4 years without a CH.   

For those who are episodic, what is the longest remission period you were without CH's?

A little depressing to hear from most of you that CH seems to return

One thing that has worked for me in this cycle has been Verap
but when there is a hint of the shadow ----I have knocked off the shadow or hint of CH with immediate dose of paracematil and very strong anti-inflams taken at the same time and downed with a caffeine tablet to increase uptake of the medication  of the paracemetol and anti inflams

whats a comma?

com⋅ma
  /ˈkɒmə/[kom-uh]

–noun
1.      the sign (,), a mark of punctuation used for indicating a division in a sentence, as in setting off a word, phrase, or clause, esp. when such a division is accompanied by a slight pause or is to be noted in order to give order to the sequential elements of the sentence. It is also used to separate items in a list, to mark off thousands in numerals, to separate types or levels of information in bibliographic and other data, and, in Europe, as a decimal point.

saxman wrote on Jan 27^th, 2010 at 8:19pm:

almost 59 cycles every year except last year.

thusly:

almost 59, cycles every year except.....

almost 59 cycles every year except......

Two ENTIRELY different meanings 8-)

good,  now there is something to be excited about turning forty .  Now i dont feel so depressed.

hahaha
christine :D :D