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Can You Grow Out Of Your Cluster Headaches (Read 15042 times)
Superirish25
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Can You Grow Out Of Your Cluster Headaches
Jan 17th, 2015 at 10:00pm
 
I have been getting clusters since I was 19 (20 years ago). I have one person I personally know who actually also has suffered from Clusters and he is 45 years old. He said when he was about 42 he had his last cycle and has not had one since. Can people grow out of a cycle as they get older?
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AussieBrian
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Re: Can You Grow Out Of Your Cluster Headaches
Reply #1 - Jan 17th, 2015 at 10:45pm
 
I reckon I have done, old mate, and my cycles are now so short and easy I should really think about deleting my profile here at ch.com.

Mind you, even if we're completely wrong about growing out of it, it's such a beautiful thought and dream that gives us hope.

Let's all hope together.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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Hoppy
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Re: Can You Grow Out Of Your Cluster Headaches
Reply #2 - Jan 17th, 2015 at 11:17pm
 
Superirish 25 wrote,
I have one person I personally know who actually also has suffered from Clusters and he is 45 years old. He said when he was about 42 he had his last cycle and has not had one since

Long breaks between episodes is quite common.
I've read of folk going 7yrs, and longer, then
for no rhyme or reason the  Smiley rears his ugly head.

Personally, I don't think you ever grow out of them

Hoppy
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« Last Edit: Jan 18th, 2015 at 12:07am by Hoppy »  
 
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jon019
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Re: Can You Grow Out Of Your Cluster Headaches
Reply #3 - Jan 18th, 2015 at 1:59am
 
AussieBrian wrote on Jan 17th, 2015 at 10:45pm:
I reckon I have done, old mate, and my cycles are now so short and easy I should really think about....
having another beer
. deleting my profile here at ch.com.

Mind you, even if we're completely wrong about growing out of it, it's such a beautiful thought and dream that gives us hope.

Let's all hope together.


There...fixed it for ya....you can check out...but ya can never leave...this is FAMILY!
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Hoppy
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Re: Can You Grow Out Of Your Cluster Headaches
Reply #4 - Jan 18th, 2015 at 2:32am
 
Smiley Smiley

Hoppy agrees.
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« Last Edit: Jan 18th, 2015 at 2:34am by Hoppy »  
 
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maz
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Re: Can You Grow Out Of Your Cluster Headaches
Reply #5 - Jan 18th, 2015 at 4:56am
 
Me too. You must never leave us Brian.

I grew into mine. Didn't start till I was 57.
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« Last Edit: Jan 18th, 2015 at 4:58am by maz »  
 
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AussieBrian
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Re: Can You Grow Out Of Your Cluster Headaches
Reply #6 - Jan 18th, 2015 at 5:24am
 
I never meant it like that, dinkum, and now I'm completely embarrassed.

My hope, my faith and my true belief is that we really do grow out of it.

A wonderful future for us all and a dream we can cling to.

Let's simply share a dream to make it come true.
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« Last Edit: Jan 18th, 2015 at 5:28am by AussieBrian »  

My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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Bob P
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Re: Can You Grow Out Of Your Cluster Headaches
Reply #7 - Jan 18th, 2015 at 7:40am
 
Had my last cycle at age 54, 10 years ago.  It was my longest cycle at 5 months, 3 to 8 attacks/day.  Went out with great fanfare!!!!
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Hoppy
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Re: Can You Grow Out Of Your Cluster Headaches
Reply #8 - Jan 18th, 2015 at 9:46pm
 
G'day Bob,
I was wondering, have you been taking a preventative
for the past 10yrs ?

Hoppy.
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Bob P
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Re: Can You Grow Out Of Your Cluster Headaches
Reply #9 - Jan 19th, 2015 at 7:08am
 
Not taking any medication.  I started ch at age 20.  Would get a cycle every 8-9 months, last 4-6 weeks with 2-3 attacks/day.  At age 40 the remission periods started to get longer but so did the cycle when they came.  At age 54, after a 2 1/2 year remission, that long cycle hit and that was the end of them.  I'm confident I'll never have another.
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Hoppy
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Re: Can You Grow Out Of Your Cluster Headaches
Reply #10 - Jan 19th, 2015 at 6:23pm
 
Did you make any life style changes since your last cycle ?

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Stymie
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Re: Can You Grow Out Of Your Cluster Headaches
Reply #11 - Jan 20th, 2015 at 4:52am
 
I hope one can grow out of them.  I am 46 and have been episodic since 21 but generally speaking with time the remissions get longer and the pain/frequency less severe (though the cycles themselves lasting longer).  I've just had a 3.5 year remission, a record for me.  But the beast is back a-knocking.

I like what AussieBrian said.  A nice thought.  Personally I feel that the flavour of the condition is changing over time with me, and the edge is coming off a bit.  Whether this is the improved treatment, management or psychological or something else, who knows.  It wouldnt totally shock me if they just stopped completely, but I've never seriously entertained the thought (good thing too as I'd be quite disappointed right now...)


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Bob P
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Re: Can You Grow Out Of Your Cluster Headaches
Reply #12 - Jan 20th, 2015 at 8:05am
 
Quote:
Did you make any life style changes since your last cycle ?

I completely stopped drinking alcohol at age 40, that's when my remissions started to lengthen.  I retired at age 58 1/2 but I don't think my stress level has gone down because since then I have moved twice, sold the family home and built a new one.
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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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Dennis
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Re: Can You Grow Out Of Your Cluster Headaches
Reply #13 - Jan 20th, 2015 at 12:08pm
 
I'm hoping that I have outgrown them.  They started at age 16; and like Bob, I got longer cluster cycles and remission periods during my 40s.  Also like Bob, I quit drinking alcohol entirely, at age 44.

Last attack in 2009.  I'm 54 now, and take no preventives.  Haven't thrown away the triptans, and still have 20 cylinders of O2 standing by, just in case.

Dennis
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Hoppy
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Re: Can You Grow Out Of Your Cluster Headaches
Reply #14 - Jan 20th, 2015 at 6:48pm
 
G'day Bob,
Again it would seem alcohol plays a major part as a trigger  in most of us myself included. Maybe those of you who drink alcoholic drinks should try to avoid them, like Bob and Dennis did, to see if that keeps the Smiley at
bay for you.

Cheers, Hoppy.
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« Last Edit: Jan 20th, 2015 at 7:15pm by Hoppy »  
 
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mabus
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Re: Can You Grow Out Of Your Cluster Headaches
Reply #15 - Jan 21st, 2015 at 12:31am
 
I sure hope to grow out of them some day.  I'm 54 and started getting cycles at 24, so 3 decades of them  Angry

I can say that the severity has diminished in the last 10 years, and the remissions are longer.  I just came back into cycle, it's been2 years I think, and so far nothing over a 5.  And that is a whole lot better than it used to be.  And alcohol doesn't seem to be the automatic trigger it usually is...

Good luck!
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Stymie
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Re: Can You Grow Out Of Your Cluster Headaches
Reply #16 - Jan 22nd, 2015 at 12:41am
 
Really nice to read some of these positive experiences.  10 years ago I asked a similar question and was told I will have it all my life.  Regardless, they also seem to get easier and longer remissions for many (most?) with time. 

Perhaps some minor comfort for the younger, recently diagnosed sufferers. 

Would be an interesting scientific study (if some clinical researchers are reading this).  Factoring in lifestyle, climate, therapy history, use of psychedelics etc etc. 

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shooky
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Re: Can You Grow Out Of Your Cluster Headaches
Reply #17 - Jan 23rd, 2015 at 7:57pm
 
It is a known phenomenon that some CHers go into complete remission when they get older.

As for me - I'm 43 now, living with the beast since I was 11, during which I was chronic, episodic and also had periods of years in which I had few attacks or none. In the past decade my remissions suddenly became shorter and my cycles got longer 2-3 weeks, than 4-5 and my last cycle (9/2014) was 9 weeks long.

Completely stopped drinking alcohol in 2010. Hardly made a noticeable change.

On the other hand, my headaches and cycles are more manageable now. After mastering my triggers and the use of triptans, O2, energy drinks etc. and with a little help from the D3 Regimen, even my 9-week cycle was relatively easy to survive.

I do believe complete remission is possible, though.
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Superirish25
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Re: Can You Grow Out Of Your Cluster Headaches
Reply #18 - Jan 25th, 2015 at 2:53pm
 
Thanks for the feedback on this topic, gives me some hope!
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Batch
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Re: Can You Grow Out Of Your Cluster Headaches
Reply #19 - Jan 26th, 2015 at 11:38am
 
I'm 70 and the beast still jumps ugly on me if I stop the vitamin D3 for a week...

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Re: Can You Grow Out Of Your Cluster Headaches
Reply #20 - Jan 26th, 2015 at 4:59pm
 
Hey Batch, Have you been able to drink alcohol the whole time you have been doing the D3 Regimem? Or if you drink will it still trigger some sport of pain?

Cheers.
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BobG
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Re: Can You Grow Out Of Your Cluster Headaches
Reply #21 - Jan 26th, 2015 at 9:00pm
 
I sure hope to out grow these attacks. After 40 years of episodic and chronic I'm getting darn sick of them.


Hey Batch, how'd you get a picture of my first wife?
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Hoppy
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Re: Can You Grow Out Of Your Cluster Headaches
Reply #22 - Jan 26th, 2015 at 9:20pm
 
My last cycle ended January 2013, age 69, no episodes
since then, and I put it all down to the vitamin D remedy,
and to answer your  Questioning EL, for me, I've been
drinking alcohol for the past two years with not sight
nor sound of the  Smiley prior to that, alcohol
was one of my main triggers.

Cheers, Hoppy.
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The Big Operator
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Re: Can You Grow Out Of Your Cluster Headaches
Reply #23 - Jan 28th, 2015 at 8:49pm
 
I'm a doctor new to web site and I think you all are nuts until my six weeks of hell begins each year. I think of the verse "If your eye offends thee, pluck it out." I'm down with that. As a surgeon, I think I can maybe pull it off at home. I wonder if anyone at work would notice the next morning.
Thanks and I look forward to battling the demon with you.
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AussieBrian
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Re: Can You Grow Out Of Your Cluster Headaches
Reply #24 - Jan 28th, 2015 at 10:58pm
 
The Big Operator wrote on Jan 28th, 2015 at 8:49pm:
...new to web site and I think you all are nuts...

Of course we're nuts, and this is the biggest unfenced lunatic asylum outside of Capitol Hill!

Do you as a doctor believe any sane person could continue living with this dread disease?

Of course not, so welcome home, and tell us how we can help.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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