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David H

Do C.H. go away with age?

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I started getting C.H. when I was 17 years old. My doctor told me that since I started getting them at an early age that they should be gone by the time I was 40. I am 41 now and they are as bad as ever. Has anyones gone away with age?

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They are known to go away with age for some CH'ers, but I think 40 was seriously optimistic on your doctor's part.

Just from observing the reports of other CH'ers on the message boards, my impression is that an episodic CH'er such as yourself (and myself) who started getting them fairly young may stand the best chance of burnout.....?

Meantime lots of us here aren't waiting around! The busting methods can send us into remission and potentially even keep us there.  8-)

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Your doctor is blowing sunshine up your butt with a soda straw. There are no rules, and there is no way to know. I got them at the same age you did and its going on 41 years now. It is a very individualistic syndrome and it presents differently in everyone.

Now that I have thoroughly depressed you, be of good cheer.

Jeebs is right; if there is any one place you stand a chance of keeping your friend caged, this is it.

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Ya I got told that too... actually my neuro followed up by saying "he had CH patients, he had elderly patients, but he didn't have any elderly CH patients"... I followed up by saying "I hope that doesn't mean they all eventually killed themselves". He didn't think it was funny.

It maybe true, but what seems universal is everyone is different. I think they use the very real possibility of it happening to give us the strength to go on. This web site works much better for that.

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I will apologize for Bonkers. He ia a smart ass.

.....bonkers, you are a smart ass 8-)

I hope this shit goes away with age. The Neuro  that first diagnosed me said "you may outgrow them".

I think he had a straw, and I felt pressure in my ass :)

Dan

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I think for every 'rule' I've read that defines a cluster headache, I either know someone who has clusters and defies that rule, or I myself defy it.

Alcohol is a trigger - not for me, and one or two others I know.

Clusters make you agitated, and you can't sit still. Not always, sometimes it does, but quit often I like to not move a muscle so I can focus on managing the pain.

I read one place that clusters always happen on the same side of the face, and the opposite nose and eye waters. Not true for me, clusters hit both sides of my face, sometimes the back of my neck, etc. And the same side of the cluster waters.

Clusters are suppose to last 15 minutes - 3 hours. Some of mine are 1-2 minutes, 5 minutes, 10 minutes... etc.

I think there are about 2 rules most of us can agree on that are true for clusters.

1. They are unique, to one degree or another for everyone, with the distinction being extreme pain.

2. As soon as you figure out the rules of your clusters, the demon changes the rules.

Renée

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Ya I got told that too... actually my neuro followed up by saying "he had CH patients, he had elderly patients, but he didn't have any elderly CH patients"... I followed up by saying "I hope that doesn't mean they all eventually killed themselves". He didn't think it was funny.

LOL ;D I imagine the neuro's face... It's funny and I don't know how to word it... With such poor data reasoning that neuro did, we can get to any theory... comes a time they fly down south... hmmm could it be: comes a time they find clusterbusters.com and the neuros never anymore hear about them.

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mine started at about 17 years old, kept coming and going as they do,  getting more and more intense each cluster, at about 45 years of age i was prescribed imigran injections brilliant back to work in 3 minutes. Problem was i got used to them and was in my most prolific cluster, on the worst day i injected 18 times, after that my attacks abated gradually over a few weeks , apart from mild "I'm still here" individual pains lasting seconds, I've been free since , I'm now 54 years old.

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mine started at about 17 years old, kept coming and going as they do,  getting more and more intense each cluster, at about 45 years of age i was prescribed imigran injections brilliant back to work in 3 minutes. Problem was i got used to them and was in my most prolific cluster, on the worst day i injected 18 times, after that my attacks abated gradually over a few weeks , apart from mild "I'm still here" individual pains lasting seconds, I've been free since , I'm now 54 years old. 

I hope you and all sufferers get your cures.

P.S my Dad suffered until the age of 50

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18 years old, they started (I'm 42 now).  Eposodic and would have from 1 to 3 cluster periods each year...  Got worse every year...

Then I found Clusterbusters.  Only one real full blown attack in the last two years since my first bust.!!!  That one was my own fault for not dosing when I should have.

Jeff

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In 2002 the Swedish headache expert Karl Ekbom reportet about his experience with 554 CH patients during the years 1963 – 1997. Source: Ekbom K, Svensson DA, Träff H, Waldenlind E.: Age at onset and sex ratio in cluster headache: observations over three decades. Cephalalgia. 2002 Mar; 22(2): 94-100. http://www.ncbi.nlm.nih.gov/pubmed/11972575

The same year he wrote in another paper: „… In our experience few patients continue to get cluster headache beyond the age of 65 to 70, and the remission periods tend to become longer during the last decade. Chronic cluster headache may become episodic before ending.” Source: Ekbom K, Hardebo JE.: Cluster headache: aetiology, diagnosis and management. Drugs. 2002; 62(1): 61-9. http://www.ncbi.nlm.nih.gov/pubmed/11790156 - (Quoted from the full text of this paper.)

Best wishes for an earlier permanent remission!

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„… In our experience few patients continue to get cluster headache beyond the age of 65 to 70, and the remission periods tend to become longer during the last decade. Chronic cluster headache may become episodic before ending.” 

Kewl!!!  That could be what's happening to me. :) :)

Thanks cluster. :)

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After my new doc laughed off every non traditional method I brought up ( especially o2), I asked her what I should do then.

She told me I would grow out of them. !?!?!?!  I've been waiting 20 years to grow out of them and at 36 they are now chronic.  I hope they eventually go away, but they are getting worse, not better.  I did not swear, punch, kick or scream, but I now know where not to go for help.

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....my new doc laughed off every non traditional method I brought up ( especially o2), I asked her what I should do then.

She told me I would grow out of them. !?!?!?!

YOW you're new doc sure sounds like a horrific jerk.  >:( :(

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