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LV

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Remission and Age
Jan 27^th, 2010 at 6:36am

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

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Bob Johnson

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Re: Remission and Age
Reply #1 - Jan 27^th, 2010 at 7:18am

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!

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« Last Edit: Jan 27^th, 2010 at 9:39am by Bob Johnson »

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Bob P

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Re: Remission and Age
Reply #2 - Jan 27^th, 2010 at 7:49am

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.

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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron. "SHUT UP HUB!"

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anthony g CH.com Old Timer Offline I Love CH.com! Posts: 318 manhattan nyc Gender:	Re: Remission and Age Reply #3 - Jan 27^th, 2010 at 7:53am 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!
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seaworthy CH.com Hall of Famer Offline Posts: 706	Re: Remission and Age Reply #4 - Jan 27^th, 2010 at 8:20am 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.
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Chad CH.com Hall of Famer Offline Posts: 738 Emmaus, PA Gender:	Re: Remission and Age Reply #5 - Jan 27^th, 2010 at 8:22am 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.
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LV CH.com Newbie Offline I love YaBB 1G - SP1! Posts: 12 x0\|Sydney\|Australia\|\|0\|0\|NSW,New_South_Wales	Re: Remission and Age Reply #6 - 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
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NovellRed

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Re: Remission and Age
Reply #7 - Jan 27^th, 2010 at 4:40pm

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.

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burnt-toast CH.com Hall of Famer Offline Posts: 1751 economy\|USA\|PA Gender:	Re: Remission and Age Reply #8 - Jan 27^th, 2010 at 4:59pm 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)
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Chad

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Re: Remission and Age
Reply #9 - Jan 27^th, 2010 at 7:06pm

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)
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Rx = Medical Prescription
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

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When the PAIN starts, I FIGHT back!

Rivea Corymbosa seeds were my KO punch, now D3 is the front runner!

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Grandma_Sweet_Boy CH.com Alumnus Offline What Goes Around Comes Around! Posts: 4496 Georgetown,Ontario Gender:	Re: Remission and Age Reply #10 - 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!!
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seasonalboomer CH.com Hall of Famer Offline CH messes with my isness Posts: 2517 Charlotte, NC Gender:	Re: Remission and Age Reply #11 - Jan 27^th, 2010 at 7:50pm 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.
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bejeeber

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Re: Remission and Age
Reply #12 - Jan 27^th, 2010 at 8:05pm

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.

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« Last Edit: Jan 28^th, 2010 at 1:23am by bejeeber »

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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saxman CH.com Junior Offline I Love CH.com! Posts: 80 portland or Gender:	Re: Remission and Age Reply #13 - Jan 27^th, 2010 at 8:19pm 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.
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Revolvr

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Re: Remission and Age
Reply #14 - Jan 27^th, 2010 at 11:01pm

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.

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jon019

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Re: Remission and Age
Reply #15 - Jan 27^th, 2010 at 11:46pm

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....

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The LARGE print giveth....and the small print taketh away. Tom Waits

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George CH.com Moderator CH.com Alumnus Offline Black-Billed Magpie Posts: 8126 Boise, Idaho USA Gender:	Re: Remission and Age Reply #16 - Jan 28^th, 2010 at 12:10am 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
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bejeeber

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Re: Remission and Age
Reply #17 - Jan 28^th, 2010 at 1:19am

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.

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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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wip5150 CH.com Veteran Offline I have tired head Posts: 119 Naperville, IL Gender:	Re: Remission and Age Reply #18 - Jan 28^th, 2010 at 12:53pm 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.
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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: Remission and Age Reply #19 - Jan 28^th, 2010 at 1:36pm 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
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anthony g CH.com Old Timer Offline I Love CH.com! Posts: 318 manhattan nyc Gender:	Re: Remission and Age Reply #20 - Jan 28^th, 2010 at 1:52pm 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!
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Brew

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Re: Remission and Age
Reply #21 - Jan 28^th, 2010 at 2:25pm

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.

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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand

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BarbaraD CH.com Alumnus Offline Hugs to ya Posts: 8333 Douglasville, TX Gender:	Re: Remission and Age Reply #22 - Jan 28^th, 2010 at 4:05pm Me... I went CHRONIC in my old age.. go figure... Guess I'm just one of lucky ones....
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Grandma_Sweet_Boy

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Re: Remission and Age
Reply #23 - Jan 28^th, 2010 at 4:34pm

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

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.

Actually my bratty little friend Wink

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!

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Brew

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Re: Remission and Age
Reply #24 - Jan 28^th, 2010 at 4:38pm

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

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

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.

Actually my bratty little friend Wink

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.

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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand

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