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johlar
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Age
« on: Apr 30th, 2007, 9:07pm »
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I started having attacks when I was 22. They occurred twice a year for the next 30 years. They began getting more infrequent obver the next couple of years (52 to 54). Since age 55  I've been CH free for the last 3 years.
 
Does anyone know if this is a common occurence. Has anyone experienced them reoccurring after a 3 year hiatus?
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Re: Age
« Reply #1 on: Apr 30th, 2007, 9:36pm »
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Welcome to the board, first of all.   Smiley
 
I've been episodic for forty years.  Started when I was thirteen.  I'm 53 now.
 
For the first twenty years, my cycles were six months apart, regular as a clock.  They're farther apart now--the last three cycles have had three years in between.  So yes--unfortunately, they certainly can come back after three years.
 
I suppose the good news is that they don't kick me around twice a year now.  Perhaps one day we'll actually outgrow them, eh?
 
There are some older members here who haven't had a cycle in more than ten years.  Maybe growing older does have some perks.  We'll see.
 
Again, welcome.  
 
Best wishes,
 
George
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Re: Age
« Reply #2 on: May 1st, 2007, 12:50am »
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Welcome aboard!
 
There are those that appear to have "outgrown" them.  I was looking forward to turning 50, as I was told that they would start to leave at that age.  I am now in my LATE 50's and they are worse than they ever were, in 28 years of fighting the beast.
 
I also hate to say it, but people HAVE come back after several years pain free.  I even went 5 years without a cycle (back when I was episodic).
 
BUT, with any luck, you will never get another attack.  I pray that you don't!
 
Good luck!
 
Chuck
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Re: Age
« Reply #3 on: May 1st, 2007, 9:38am »
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Morning:
I don't know if age has all that much to do with it. I know they seem to be less frequent with age but they don't seem to go away. I'm 72 and have had them since my 20s. I'm in a cycle now but it is not as bad as it could be. I only get them in the evening which has never happened before and they seem to be done by about 10;30-11;00. I've been using O2 to abort them but sometimes I feel that it only spreads them out. Last evening I got one about 8:00 and didn't use the O2, it was about a 6, lasted 45mins, and that was it. With the O2 I probably would have had about 4 minor ones. It sure is a strange condition...................Vern
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Re: Age
« Reply #4 on: May 1st, 2007, 11:34am »
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It sure is a strange condition...................Vern
 
And that simple statement says it all! There is so little rhyme or reason to anything related to these things. I was told when in my 20'3 and 30's I would probably outgrow them. The elders on this board have pointed out that may not be the case! The only constant is the board.
 
Guiseppi
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Re: Age
« Reply #5 on: May 1st, 2007, 1:18pm »
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My attacks started at about age 26. I'm now 60. Have'nt has a 'true' cluster for about 7 years. Just a lot of shadows each year. Out-grow them? Heck, I don't know. Probably won't until I die.
 
on Apr 30th, 2007, 9:36pm, George_J wrote:
 Maybe growing older does have some perks.  We'll see.
George

Yep! On my 60th birthday I duct taped my left blinker in the ON position.
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Re: Age
« Reply #6 on: May 1st, 2007, 1:27pm »
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Hi
 
I started with these when I was 14 and I'm now 54.
For the first 10 years they lasted a month, twice a year, but only occurred every other day for 2 hours when in cycle. For the second 10 years they got alot worse, cycles lasting 3 months with a 4-6 hour headache every day. During the 90's though they seemed to ease off slightly, still coming once a year and lasting for a 6 week cycle, but the pain was less severe, the runny nose and teary eye went away and they went back to 1 every 2 days lasting around 1.1/2 hours. Bear in mind that at this stage I still did not know what they were. It was not till the late 90's that I was diagnosed and started going on the meds. Since then, although the remission can now be up to 2 years, when in cycle the headaches are vicious and occurring multiple times a day - something that was unheard of before the meds.
It just makes me wonder sometimes if, at 54, I am making them worse and prolonging them by trying to control them.
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Re: Age
« Reply #7 on: May 1st, 2007, 1:50pm »
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Started with clusters at age 17 had them every May-Aug before formal meds.  Once on the meds I settled down to 6 weeks but there was never a firm month that they would start.  
 
Since 1990 I have skipped some cycles 90,91,93,95,98,2002,2007 so you can see as best as I can remember I have skipped cycles.  
 
My last cycle was on July 4th 2002 I didn't get this cycle until Feb 24th but lasted 6 weeks.  This last cycle I have had some strong shadows that are coming and going still after my cycle has ended but I'm not on any meds and I don't need to hit the O2 so I'm hoping I am done for at least another 5 yrs. I am 44 yrs old.
 
Good Luck what I find is if your not getting them many can get caught up with worrying about when the next cycle will hit me included.
 
Sami
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Re: Age
« Reply #8 on: May 1st, 2007, 2:14pm »
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on May 1st, 2007, 11:34am, Guiseppi wrote:
It sure is a strange condition...................Vern
 
 ..The only constant is the board.
 
Guiseppi

 
Oh, no, other constant it's that CH's hurt like hell!!!! that never change
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Re: Age
« Reply #9 on: May 4th, 2007, 1:14pm »
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I think its strange that this started almost exactly the same time as my 21st birthday!  I don't drink either so alcohol wasn't the reason.  
I read somewhere on this board or the OUCH site or somewhere else (sorry I forget where) that there is some sort of a trend that is diffferent with males and females...men tend to start in their teens, women either in their early 20s or 40s, and both groups begin to subside by mid 50s.  But thats just a generalization...averages.  I remember the logic with females was some theory about being at the beginning and ending of the peak reproductive times....not sure if I buy it I think it could be more lifestyle changes that happen during those years or something...who knows...its too confusing trying to figure this stuff out!
Lisa
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Re: Age
« Reply #10 on: May 4th, 2007, 1:39pm »
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I started at 15 and am now 37.  Misdiagnosed as migraine until I was 30.  Most docs I have seen hint that it can stop later in life.  Probably just positive thinking.  One doc I saw thought it had to do with people going through their changes.  He was convinced that men as well as women go through changes in their 40's-60's.  Sort of a male menopause.  I wasn't completely convinced but he put up a good arguement.
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Re: Age
« Reply #11 on: May 4th, 2007, 1:50pm »
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He was convinced that men as well as women go through changes in their 40's-60's.  Sort of a male menopause.  
 
Nothing would make my wife happier then if I started doing the hot flashy thing with her!!!! Although if it meant headaches go bye bye.....hmmmm
 
Guiseppi
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Re: Age
« Reply #12 on: May 4th, 2007, 2:28pm »
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I had this discussion with my neuro last time I saw him. He said the CH is something that mostly effects the middle aged, especially men, but  a lot of people who post here say the HAs started in their 20s or even teens and there seems to be a fair number of women sufferers compared to men. It could be that Internet users tend to be younger and that more are on this board than the general CH population.
I started getting them in my late 40s and am 58 now with no sign of them going away, although the cycles and pain free periods have become longer.
         Rich
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Re: Age
« Reply #13 on: May 4th, 2007, 5:00pm »
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but  a lot of people who post here say the HAs started in their 20s or even teens and there seems to be a fair number of women sufferers compared to men. It could be that Internet users tend to be younger and that more are on this board than the general CH population.
 
An excellent point, I'm no statistics junkie but I wonder if that has an affect on our stats. If not for my wife being a computer person I might never have heard of this place?  
 
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Re: Age
« Reply #14 on: May 4th, 2007, 10:32pm »
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For me, there is an age factor. Too many stories to not at least acknowlege something.  
 
I was 23 when mine started and I was 45 when they began to lessen and for the last 16 years, I have had nothing at all that resembles a CH hit. I've been very lucky.  
 
Here is something that worked for me:
 
 
      Dr. Wright’s Circulatory Technique:
 
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
 
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
 
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
 
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.  
 
Charlie  
 
 
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Re: Age
« Reply #15 on: May 5th, 2007, 2:45pm »
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I either haven't gotten enough sleep lately or I am just crazy
 
I just sat here at the computer trying to will blood into my arm so hard that I got light headed - or I am just tired and imagined it (which I suppose the later is true)
 
I think I am going to have to study more on this, because my daughter said my face got all red, so I guess that means I sent the blood the wrong way.   now that I think about it, I don't think I was breathing.  crap - have to try that again
 
I am very interested in this technique
 
 
 
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Re: Age
« Reply #16 on: May 5th, 2007, 2:58pm »
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Started at 12....was chronic for 31 years....PF for 14 months and then they came back.
 
I would say im episodic now, id rather be chronic believe it or not!
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Re: Age
« Reply #17 on: May 5th, 2007, 5:25pm »
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on May 5th, 2007, 2:45pm, Erika wrote:
I either haven't gotten enough sleep lately or I am just crazy
 
I just sat here at the computer trying to will blood into my arm so hard that I got light headed - or I am just tired and imagined it (which I suppose the later is true)
 
I think I am going to have to study more on this, because my daughter said my face got all red, so I guess that means I sent the blood the wrong way.   now that I think about it, I don't think I was breathing.  crap - have to try that again
 
I am very interested in this technique
 
 
 

 
 
I'm getting a little off-topic here, but...
 
 Smiley  
 
You're not crazy, Erika.  It was easier for Charlie to learn than it was for me--took me quite some time.    
 
I think what you may be doing is tensing while you're trying to redirect the blood flow.  If you're holding your breath until your face turns red, that very well may be the case.    Wink
 
Relax the muscles in your arms instead, and relax also the muscles in your shoulders, back, and neck.  It's a bit hard to describe, but it's more like "allowing" the blood to flow where you want it go--not forcing it to redirect.
 
Correct me if I'm mistaken in what I'm saying, Charlie, or if you have anything to add.
 
Best wishes,
 
George
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Ah! The foreigners put on such airs
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And their harlequin eyes.
The pain they inspire
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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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Re: Age
« Reply #18 on: May 9th, 2007, 1:27pm »
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I found that if I feel one coming on I'm all tensed up. I found that if I totally relax my head and body (starting with the head) I excape a full blown hit. Also, doing the neck swival excercise seems to help allot. So far so good. Everybody is a bit different.
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Re: Age
« Reply #19 on: May 21st, 2007, 11:27pm »
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on May 1st, 2007, 2:14pm, Rosybabe wrote:

 
Oh, no, other constant it's that CH's hurt like hell!!!! that never change

I hear that. hammer.
 
 
 
Dave
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Re: Age
« Reply #20 on: May 30th, 2007, 4:42am »
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on May 5th, 2007, 2:58pm, Jonny wrote:

I would say im episodic now, id rather be chronic believe it or not!

 
I totally get that. Back in my chronic days I knew how to function; the pain came, the pain went, the pain come. Being episodic is... just different. It is bit harder to know when you'll be getting hit, it's still new to me I suppose. Having said that, I don't wish to be chronic again. I just kew bit better what to do back then.
 
Sanna  
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Re: Age
« Reply #21 on: May 30th, 2007, 9:54am »
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on May 30th, 2007, 4:42am, sandie99 wrote:

 
I totally get that. Back in my chronic days I knew how to function; the pain came, the pain went, the pain come. Being episodic is... just different. It is bit harder to know when you'll be getting hit, it's still new to me I suppose. Having said that, I don't wish to be chronic again. I just kew bit better what to do back then.
 
Sanna  

sucks being chronic but I cope alot better now than when I was eipisodic.  I don't "lose it' as easy if you know what I mean.  I stay calmer till a higher pain level and stuff.  wow I just have a way of putting things into words this am Roll Eyes
 
My grandpa outgrew them.  Started in his 20's and I have no clue how old he was when they stopped but I dont remember him having them.  I was estimating 50-60's but under further thought I am thinking maybe he stopped with clusters when he was in his 40's (i was very close to my grandpa and spent alot of time with him and NEVER witnessed an attack) so I had to be awful young when he stopped getting them.
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Re: Age
« Reply #22 on: Jun 1st, 2007, 3:14am »
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I was 50 when I had my first round with the beast; had a 5 year break & went chronic & been that way ever since, now 58.
 
It sure is one strange beast.
 
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Re: Age
« Reply #23 on: Jun 7th, 2007, 2:44pm »
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Mine started at age 27 in 1995.  I am now 37, so have had them for 12 years.  It was not until 2001 when I was properly diagnosed.  Prior to that I was told I had migraines and put on midrin (didnt do crap of course)  Put on respair (sinus med made them worse.)  Checked for deveated septum, the list goes on...  Anyway, when they first started it was about every 6 months they came.  They then slowly started to spread to about 9 months.  The last episode before this one was about 18 months and the time before that about 1 year.  So it seems that they are slowly becoming less frequent...  I pray every time that it will be the last.  Maybe I will be one of the lucky ones when I hit the 50's...
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Re: Age
« Reply #24 on: Jun 7th, 2007, 4:57pm »
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I started with CH around age 57 and am 65 now.  In all that time I've tried all the major meds.  Either the headaches are slowly burning themselves out, or I eventually settled into a medication regimen (320 verapamil, 600 lithium, one cafergot, O2 as needed) that works.  My cycle coincides almost exactly with fall and winter (Sept. 20 -- March 20).  My advice is be positive and assume your headaches are on the way out.
 
Michael
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