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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> Do they ever end at some point in life?
        
(Message started by: calebgg on Jan 5^th, 2005, 7:41am)

Title: Do they ever end at some point in life?
Post by calebgg on Jan 5^th, 2005, 7:41am

I read that CH usually affects 20-40 year olds. I got my first at 26, nine years later still get them about once a year. They seem to stop as randomly as they started. That said, is there ever a time when they stop altogether? Are there any people out there that had them for a few years only? A decade or so? Do you know anything specific that led to the end of the episodes altogether? A new job, retirement, marriage, divorce, a new partner, new children? Any medical treatment?
I found that specific life changes often triggered my episodes. In fact, my first episode occurred after I broke up with my girlfriend of 4 years, my second when I was contemplating quitting my job of 7 years. etc. The episodes are usually triggered by moments of great stress - when I have to make a life changing decision, or am faced by a potential life changing decision that I do not necessarily want to make at that time.
Please let me know if you've been an episodic sufferer, and have had a period of remission for longer than 2 years - and if you think you might be in 'permanent remission.' And if you think you're in permament remission, do you have any idea on what caused it? (My longest period of remission was 3.5 years between my first and second episode. Since my second episode, I seem to get them every one to two years.)
Thanks,
Calebgg

Title: Re: Do they ever end at some point in life?
Post by dagger on Jan 5^th, 2005, 9:06am

I posed this same question on the board and most response indicated that they don't quit. However, my brother hasn't had an episode for over ten years and was told by his neurologist that they often go away as one ages. I was in remission for 5 years until the beast returned. This time I am in week 12 of a cycle, the longest one ever! Usually they last around six weeks. I am really hoping that this will end forever!! Good luck - dagger

Title: Re: Do they ever end at some point in life?
Post by Filbert on Jan 5^th, 2005, 9:31am

From the OUCH uk info leaflet

" An encouraging piece of information for sufferers is that a substantial proportion of them can expect longer pain-free periods as they age. "

Written by Dr Manjit Matharu who used to be a research registrar to Prof. Goadsby.

Hope is a great thing!

Filbert.

Title: Re: Do they ever end at some point in life?
Post by nani on Jan 5^th, 2005, 9:48am

Welcome cale...I had my first at age 16...31 years later and for the last 4 years I've been chronic. Never give up hope, though....this thing's got a mind of it's own.

Title: Re: Do they ever end at some point in life?
Post by Bob P on Jan 5^th, 2005, 10:07am

For the first 20 years of my cluster life I would start a 4-6 week cluster period every 8 or 9 months.

When I turned 40 y/o the remission periods jumped to 2 years in length and every new remission gets a few months longer. It's now been 3 years since the end of my last cluster. I'm hoping I've hit that magical age where they stop.

Title: Re: Do they ever end at some point in life?
Post by BobG on Jan 5^th, 2005, 12:07pm

I'm 57 now. Clusters started at about age 27. One (sometimes two) cycles a year that lasted 8-10 weeks.

95% of my attacks were nighttime.

As I got into my 40's the clusters started skipping years. I haven't had a "true" cluster for about 5 years now.

For the last 3 or 4 years I have been having clusters of shadows that last 8-10 weeks. 95% of them in the daytime.

There are people here old than me that are still having clusters.

Out grow them? Beats me.

Title: Re: Do they ever end at some point in life?
Post by RollTide87 on Jan 5^th, 2005, 1:16pm

I started at age 20 with 1 to 2 cyles per year, then as the years went on, 1 cycle per year at about 16 weeks for the cycle. I am now 39 years old and have one cycle every other year that lasts app. 16 weeks. I am currently in cycle. They usually start in November.

Title: Re: Do they ever end at some point in life?
Post by floridian on Jan 5^th, 2005, 2:23pm

The beast is mysterious and unpredictable. There is hope, but there is also uncertainty.

I have been in remission for just over two years in the sense that I have not had the severe incapacitating headaches. But every summer I still notice my body doing weird things during the period when my clusters used to arrive. So I have not been cured by any stretch, but things have gone from bad to tolerable (knock on wood).

Title: Re: Do they ever end at some point in life?
Post by EvertBoer on Jan 5^th, 2005, 6:40pm

I'm 55 now. Started episodes at age 19. For the first 20 years or so had an episode every year lasting 5-8 weeks. When I hit my 40's, I started skipping a year or 2 between episodes. Currently, the remission period is about 5 years. The episodes are lasting longer, but the HA's are easier to abort.

Title: Re: Do they ever end at some point in life?
Post by bobbio56 on Jan 5^th, 2005, 8:08pm

I'm 48, chronic last 2 years. Previous to going chronic I had a 1 1/2 yr break. Thought the bastards were gone. Oops.
Now, they're more intense than ever and every day. I hope I can write soon that they lessen with age.
I am convinced that there is a certain stress component involved, although I'm sure it varies by individual.
I just treat them as the enemy and fight like hell. It heplps to consider them as an outsider with their own personality.
My girlfriend is convinced I'm nuts, but loves me anyway. They're so exact in timing that she knows when to stay in 1 room. Best of luck, PFD!

Title: Re: Do they ever end at some point in life?
Post by the_old_man on Jan 5^th, 2005, 10:59pm

Mine started in my early thirties. I'm in year 27. I have 2 cycles per year lasting about 6 weeks. They hit only at night and I get three hits. I just went 18 months pf and thought it was over. In late October they came back. I'm now in week 10 and they are more intense than ever. I've had 2 pf days since this cycle started. I'm 60. How old do you have to get before they start to ease up? Maybe it's because I look so good for my age that the beast thinks I'm younger than I really am and he keeps hitting me.

The Old Man

Title: Re: Do they ever end at some point in life?
Post by calebgg on Jan 6^th, 2005, 3:40am

Thanks for all your responses. It is encouraging to read your posts. And I appreciate the support. My remissions seem to be getting a bit longer... I am hopeful. Hope helps. I am in the middle of a cycle now... I usually get mine in the day (occassionally awoken from sleep by one). I thnk my cycle is going down... had 1 monday, three Tuesday, four Wednesday... and so far none Thursday... I just went on Prednisone yesterday, hope it helps... --Caleb

Title: Re: Do they ever end at some point in life?
Post by Bob P on Jan 6^th, 2005, 9:47am

Caleb,
Prednisone stops my attacks dead in their tracks. They usually return as I taper off the pred. Your painfree day is likely due to the pred.

Quote:

For the last 3 or 4 years I have been having clusters of shadows that last 8-10 weeks. 95% of them in the daytime.

I was just telling some clusterbuds the other day that I thought I was having silent attacks. For the past 6 weeks I've been getting a tingling/swollen feeling in the area of my cluster pain. It's been happening at the times of day that I normally would have attacks. Sometimes my schnoz would run or clog along with this.

I figure I've finally smoked enough cigars to turn my arteries to concrete.

Title: Re: Do they ever end at some point in life?
Post by Jimi on Jan 6^th, 2005, 11:37pm

My story is very similiar to BobP's. Mine changed at 40 as well. I went 3 years between them in the 90's. The cycle however was 6 mos. In 2000 I had another cycle that went 6 mos also. That has been my last one. It has been 4 years. I used to have them every year prior to that.

Title: Re: Do they ever end at some point in life?
Post by Kris_in_SJ on Jan 7^th, 2005, 8:29pm

I guess I'm the proverbial "fly in the ointment." Mine didn't start until the tender age of 41. Never had a headache of ANY kind before that.

Then, again, I'm a woman and "women don't get clusters."

Fact is, the Beast is unpredictable. Luckily, my cycles are pretty far apart (3-5 years) and what I've learned here on the board will help me with all future cycles - whether they get closer or farther apart - or hopefully disappear altogether!

PF Wishes to All,

Kris

Title: Re: Do they ever end at some point in life?
Post by Sophie on Jan 7^th, 2005, 9:41pm

I never had allergies, sinus problems or headaches until I started menopause---which I had a very easy time---no severe hot flashes or night sweats.
But I started getting some strange headaches and got treated for sinus---went to chiro---all the usual stuff. Lot's of OTC sinus drugs.
This was 10-12 years ago.
As time went on the headaches became worse and more frequent and I could no longer deal with it without
help-----soooooo 2 years ago my Dr. gave me a name for the pain "Cluster". I got the usual batch of drugs, along with the side effects. About the same time I found this web site and realized "you are not alone".
So, now I'm 61 and preparing for the next cycle with info from cluster/buster----and hoping for the best.
I never felt like I needed hormones, but maybe that might of helped----I'm not going to try them now---putting all my hope in the natural prevent.
Anyway, the point is I don't quite fit the 30 something male profile. I do have hazel eyes (joke).
So like someone else wrote before it's not predictable.
Sophie :)

Title: Re: Do they ever end at some point in life?
Post by aggiegran on Jan 7^th, 2005, 11:48pm

:All I can tell you is I'm 65 started having them at 50, and my episodes last longer, and have more in a 24 hr period....so not only do I fit the age group I don't fit the gender.....What the heck? I keep thinking someone somewhere will find an answer, before they kill me....Good luck to ya, Hope you have lots of PF days ahead!!!! Ann

Title: Re: Do they ever end at some point in life?
Post by ccbiggsoo7 on Jan 14^th, 2005, 2:48pm

Neuro told me clusters usually get better with age, but he currently is seeing a 76 year old with clusters. Chances are better for improvement w/ age but lets just hope you are one of the lucky ones.

Title: Re: Do they ever end at some point in life?
Post by sandie99 on Jan 15^th, 2005, 6:00am

I have met 4 neuros so far.
One of them said that I'll be living with CH for the rest of my life.
Another said there's a chance that once I'm over 40 things get easier. I'm 24 now...

So, who knows? God, I do hope they'll end in some point... You know, before death... ;;D