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swhitmanp
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newbies first post
« on: Feb 21st, 2008, 3:19pm » |
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Hi my name is Steve, I am 47 and have suffered cluster headaches for about 15 years.
I take Verapamil dailyand oxygen and Excedrin migraine at onset of headaches.
I took the survey on this site which asks what medications members have tried and their effectiveness but was wondering if any surveys have been done here on the age ranges of cluster headache sufferers on this site?
The reason I ask is that I remember reading in a forum at some other site a while back that several people had written in about friends and family members of cluster patients whos headaches suddenly disappeared after they reached a certain age in their life.
Has anyone else heard of these stories?
It certainly would be something to look forward to in old age! 
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echo
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Re: newbies first post
« Reply #1 on: Feb 21st, 2008, 3:30pm » |
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Sorry that you suffer from these little jewels. Glad you found the site.
There are a few folks that appear to have the severity and frequency of CH tapper off after they cross over the middle age line. I was hopeful of that happening for me, but it has not.
I don't know if mine were worse in my 20s and 30s or that I've just gotten used to them now that I'm in my 50's.
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
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LeLimey
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Re: newbies first post
« Reply #2 on: Feb 21st, 2008, 3:43pm » |
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Hi Steve it's nice to meet you 
I think we've all heard those stories and there are certainly people here who have been hit free for quite a while (like Jimi but he's older'n dirt!)
At the end of the day it's better to live with it than consider the options! I hope you get some pain free time soon but welcome to the best place there is for clusterheads.
Excedrin isnt going to help you too much. It's the wrong sort of painkiller. CH hurts because the blood vessels in your noggin dilate and squish everything else. What we need are vaso constrictors to reduce them again. Have you tried any triptans?
Have a look at info here about coffee and energy drinks like red bull. A lot of us find those extremely helpful home remedies.
Look after yourself!
Helen
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Guiseppi
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Re: newbies first post
« Reply #3 on: Feb 21st, 2008, 3:57pm » |
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I'm almost 48, I was hoping for the "grow out of em" to happen to me. Then Sail Pappy, who is older then the ocean, broke it to me that age alone wasn't the answer! 
Like Helen said, I HOPE every cycle is the last one, but each time the beast returns I sigh, get back on my lithium, check the oxygen and imitrex stock, and get ready to do battle. Live your life bewteen the hits!
Glad you found us, welcome to your second family.
Guiseppi
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AussieBrian
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Re: newbies first post
« Reply #4 on: Feb 21st, 2008, 4:00pm » |
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It may well be nothing more than a rotten, filthy rumour with no basis in fact at all - but that won't stop me believing it.
It gives me hope.
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seasonalboomer
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Re: newbies first post
« Reply #5 on: Feb 21st, 2008, 4:16pm » |
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My dad seemed to age out of his in his late 50's after he retired.
He got one last round a few months before he passed away just as a parting gift I guess.
So I don't know which part of what I just said is gloomier:
-"his late 50s'"
-"before he passed away"
-"as a parting gift"
He had a great run with nothing for about 6 or 7 years before then though - -and he had, in his day, cycles that were of a greater length than his hiatus's.
Hang in there.
Scott
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swhitmanp
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Re: newbies first post
« Reply #6 on: Feb 21st, 2008, 4:29pm » |
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Thank you for the warm welcomes
I realize that the only incredient in the Excedrine that is helping me is the caffein and you are correct in the fact that I should probably switch to coffee or energy drinks as it is I`m sure better for my stomach.
I used to think that Imitrex was such a godsend until I realized the rebound headaches were just as predictable to come each time I used it and my insurance only covers about 4 shots each twenty days or so.
I did however read the tip on this site about cutting the dose and think this might be worth trying.
Glad to know I`m not alone in this battle.
Thanks, Steve
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Jimi
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Re: newbies first post
« Reply #7 on: Feb 21st, 2008, 4:32pm » |
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Welcome to the board Steve. I suffered clusters for over 30 years. They did change as I got older. Longer and longer in between time. I had my last cycle in 2000. It lasted longer than any other. 6 mos in fact but that has been my last one. DJ's last one was about the same time. Charlie has us all beat. I can't remember how long. I am thinking about 10 years or more. So keep coping but keep hoping. 
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BarbaraD
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Re: newbies first post
« Reply #8 on: Feb 21st, 2008, 5:19pm » |
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Steve about the Excedrin -- if taken too often they will cause rebound headaches. It's ok ever once in a while (I take 3 with a cup of coffee or an energy drink in an emergency, but can't take them more than a couple of times before I get a rebound).
Have you tried ergotomine (Cafergot). It doesn't seem to have the "bad" effects of Imitrex. I keep it as a "standby" in case the O2, energy drinks, or coffee doesn't work. It's an OLD vaso-constrictor, but I like it a lot better than the trex's.
I'm older than dirt and am chronic, but am looking forward to these things stopping any day now....  Several people have had it happen..... Maybe if Linda H and I would quit lying about our ages...... oh well....
Hugs BD
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Jimi
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Re: newbies first post
« Reply #9 on: Feb 21st, 2008, 5:33pm » |
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I agree Barb. You don't hear much about Cafergot anymore. But the suppositories worked well for me all these years. When I added 02, the cafergot seemed to hold off the next one for a few hours. You me and BobP. But like a lot of other things, newer is not always better. 
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I am convinced that life is 10% what happens to me and 90% how I react to it.
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Bob P
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Re: newbies first post
« Reply #10 on: Feb 21st, 2008, 6:01pm » |
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The old farts, takin' the old medications (yep, that includes you too Joe).
Mine are getting farther apart as I get older also. Last remission was 3 yr 3 mo. long but the episode lasted 5 months when it came (longest ever). Maybe, like Jimi, it was the last one for a while (hope so, I have to start building the retirement house this Fall).
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Guiseppi
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Re: newbies first post
« Reply #11 on: Feb 21st, 2008, 6:04pm » |
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I see you already mentioned oxygen. If I use only oxygen, the headache returns in 10-20 minutes. I've tried staying on the 02 10-20 minutes after the pain is gone, still the same result, head ache returns.
Now I pop 1-2 oral cafergot, I try and guage the intensity of the oncoming attack, then start the oxygen. The 02 knocks it down in 8-10 minutes, the cafergot buys me up to 12 hours. The only real side effect for me is the "coffee jitters." It's kept me awake all night a time or two. Using that combo I've all but eliminated the need for imitrex injections. (Although they stay in my pocket or glove box just in case!)
Might be worth a try. Cafergot is very cheap so if you don't have prescription coverage it's a great alternative to try.
Guiseppi
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Jimi
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Re: newbies first post
« Reply #12 on: Feb 21st, 2008, 6:16pm » |
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Thats exactly the way it worked for me too. If I didn't know better, I would think that you and I have a lot in common.
edited to add: Of course you are the new and improved version. 
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I am convinced that life is 10% what happens to me and 90% how I react to it.
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chewy
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I'm one of those stories. Sort of.
My CH started when I was around 18. 2 to 3 cyles per year. 2-3 month cycles. I'm now 50 and haven't had a full blown cycle in about 5 years.
I still get the occasional hits, shadows and mini cycles but nothing close to the extent I had for 25 years or so.
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Guiseppi
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Re: newbies first post
« Reply #14 on: Feb 21st, 2008, 6:52pm » |
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edited to add: Of course you are the new and improved version.
Can't wait to get home and tell the queen she's married to the "new and improved" version! That's sure to put a twinkle in her eye.
To Bob for the old fart crack!
Guiseppi
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kcopelin
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Re: newbies first post
« Reply #15 on: Feb 21st, 2008, 7:07pm » |
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Well I sure hope I grow outta these started in 1981 episodic every couple of years-with more time off for having babies-, turned chronic Feb 2005.
Menopuase is past....that didn't help. Arthritis has set in ...that didn't do it. got bi-focals-no help. Cholesterol is up- no help for CH there. No, in my case growing older just means...well...growing older.
now, where did I put the telephone? 
welcome to your new home,
many of us are quite sane, some are normal, all are related by shared pain.
kathy
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BlueMeanie
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Re: newbies first post
« Reply #16 on: Feb 21st, 2008, 7:27pm » |
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on Feb 21st, 2008, 6:01pm, Bob P wrote:| Last remission was 3 yr 3 mo. long but the episode lasted 5 months when it came (longest ever). |
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That's how it seems to be for me. That longer between cycles, the longer the cycles last. Yes some do get very long periods. So far I'm one of the lucky ones this time around. I've had a couple of older gentlemen tell me theirs ended all together, but alot of people say they have clusters. Not sure if they actually did have Clusters though. I guess you really just never know.
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Jonny
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Re: newbies first post
« Reply #17 on: Feb 21st, 2008, 8:31pm » |
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23 years chronic no meds, no diagnosis......31 years total chronic.....14 months PF......6 weeks of hits.....one year PF.....more hits......I guess I went episodic.
Im running out of Zomig NS, so if you got extra let me know (But, dont tell Chewy, he might call the cops on you!)
Hang in there, Steve....you got family that knows now!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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George_J
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Re: newbies first post
« Reply #18 on: Feb 21st, 2008, 9:35pm » |
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Welcome, Steve.
By all indications, I'm one of those whose CH is fading as well.
I started with CH at the age of 13. I'm 54 now. I've always been episodic, with cycles that last 6-8 weeks. For twenty years, I cycled twice a year, spring and fall. For the next ten, I cycled once a year. My last three cycles have each been three years apart. The last one ended in the spring of 2006.
A typical cycle is still 6-8 weeks long. So it appears that they're becoming less frequent--without increasing in duration.
I'm not ready to say that I'm out of the woods yet, though. Who knows, eh?
People here have speculated (without much evidence, sadly) that CH as a condition may have a natural lifespan. Here's hoping that it does, and that its lifespan does not exceed my own.
Best wishes, and again--welcome.
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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swhitmanp
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Re: newbies first post
« Reply #19 on: Feb 21st, 2008, 9:41pm » |
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As if the clusters weren`t enough I am going in this monday for hip replacement surgery and my doctor won`t prescribe the cafergot because of the avascular necrosis I am having in my hip joint.
I guess I`m damned to a life of coffee and late night television.
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Jonny
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Re: newbies first post
« Reply #20 on: Feb 21st, 2008, 9:45pm » |
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on Feb 21st, 2008, 9:41pm, swhitmanp wrote:
I guess I`m damned to a life of coffee and late night television. |
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Sounds good to me....as long as I dont have to work....LOL 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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swhitmanp
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Re: newbies first post
« Reply #21 on: Feb 21st, 2008, 9:52pm » |
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yOU`RE A RIOT JONNY... CHEWY WARNED ME ABOUT YOU!
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Linda_Howell
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Re: newbies first post
« Reply #22 on: Feb 22nd, 2008, 12:06am » |
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I see you are in Knights Landing, California.
Where abouts is that?
Linda who's lived in Calif. all her life.
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imnotbub
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Re: newbies first post
« Reply #23 on: Feb 22nd, 2008, 12:20am » |
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I was a one episode a year guy until two or three years ago, and then "poof". Nothing since. ( I know I just jinxed myself but what the hell.) I just turned fifty so let's see if the demon has retired.
Steve 
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swhitmanp
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Re: newbies first post
« Reply #24 on: Feb 22nd, 2008, 12:36am » |
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Knights Landing, CA is about 35 miles northwest of Sacramento and is on the Sacramento River.
Born and raised in Woodland
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