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Who's been a Beast Warrior the longest? (Read 6002 times)
thebbz
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Re: Who's been a Beast Warrior the longest?
Reply #25 - Sep 4th, 2008 at 11:48am
 
Well it's pretty obvious that CH doesn't go away after a few years, or even 29 years.
Demon bastard.
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Re: Who's been a Beast Warrior the longest?
Reply #26 - Sep 4th, 2008 at 3:22pm
 
My first was about a year before I had my first child.  My oldest is 8.  I hate that his age is how I remember my ch timeframe.  Back then episodic.  Been chronic for quite a few years now.

Nothing wrong with this question in my book, no question is stupid remember?  Courisity is ok.

Speakin of kids... off to the bus stop!
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Re: Who's been a Beast Warrior the longest?
Reply #27 - Sep 4th, 2008 at 6:02pm
 
MPMIII wrote on Sep 4th, 2008 at 11:37am:
A very depressing thread considering I am only 3 years into the club.



I know what you mean.  I prefer to take in my CH pain one hit at a time instead of thinking of the cumulative pain of 30 or 40 years.  that's just too much to handle in one thought!

I had my first CH in 1990.  Holy heck, that's 18 years!
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Re: Who's been a Beast Warrior the longest?
Reply #28 - Sep 5th, 2008 at 8:38am
 
My biggest fear is for my last 2 children.  I have 4, as my bride had 2 young boys when we married.  My last 2 are 24 and 22, a girl and boy, {or woman and man} respectively.  I've accepted my role as a "temporary" residence of the vermin.  I can remember watching my dad, like back in 1960, injecting himself with morphine, trying to control the beast.  I have a letter from a Doctor from 1950, when they were trying to get him back in the Army for Korea, stating he had "Histamine Headaches" that were debilitating.  As far as I know, they say the beast is not genetic, but I don't believe it.  When I was in nursing school, in '87, they said cancer wasn't genetic.  Yeah, right.
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Re: Who's been a Beast Warrior the longest?
Reply #29 - Sep 6th, 2008 at 1:38pm
 
MPMIII wrote on Sep 4th, 2008 at 11:37am:
A very depressing thread considering I am only 3 years into the club.






I can see where the thought of years, even decades of living with the beast can be depressing.

But, look at these folks.....some are chronic, some episodic, but they all have one thing in common

They are survivors and WARRIORS!  Despite their CH, they live their lives to the fullest and are here trying to help the rest of us live our lives as well.

God bless them all.

Sandy
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Re: Who's been a Beast Warrior the longest?
Reply #30 - Sep 6th, 2008 at 4:12pm
 
Sandy_C wrote on Sep 6th, 2008 at 1:38pm:
MPMIII wrote on Sep 4th, 2008 at 11:37am:
A very depressing thread considering I am only 3 years into the club.






I can see where the thought of years, even decades of living with the beast can be depressing.

But, look at these folks.....some are chronic, some episodic, but they all have one thing in common

They are survivors and WARRIORS!  Despite their CH, they live their lives to the fullest and are here trying to help the rest of us live our lives as well.

God bless them all.

Sandy


Well said Sandy.

Thats the value of a thread like this. No matter how hard or how often we adapt and just live life to the very best of abilities.
Never let the demons run it for you. Its your life

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Re: Who's been a Beast Warrior the longest?
Reply #31 - Sep 6th, 2008 at 9:08pm
 
Tara Ann wrote on Sep 4th, 2008 at 3:22pm:

Nothing wrong with this question in my book, no question is stupid remember?  Courisity is ok.


Amen to that Tara Ann!  One thing about the longevity of some of us, their experiences educate many, and many more to come.

I'm 23 years into it, 9 years misdiagnosed .... but starting to question all the teen years of headaches that my parents took me to the doctor for!

Lie about my age?  nope. I'm 45, and its been the last two years I've really learned to live in spite of ch.

Oh, and about that genetic thing: my grandfather on my mother's side had debilitating headaches....  Papa was hopelessly addicted to chocolate.   My only known trigger?   chocolate (scares the shit out of me to even taste it now) 

Keep asking questions, jj. The day you stop askin  is the day you stop learning!  Welcome!!!!

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Re: Who's been a Beast Warrior the longest?
Reply #32 - Sep 6th, 2008 at 9:16pm
 
Quote:
They are survivors and WARRIORS!  Despite their CH, they live their lives to the fullest and are here trying to help the rest of us live our lives as well.


I am with Sandy on this and then some. I think having Ch actually makes my life better than those people who do not as it really helps me keep things in perspective sometimes.

Lots of people I know get rattled to the point of worry at/ about the smallest of things that might not even be true.

If anything, a good, hard CH cycle makes me take the rest of the world's BS with a grain of salt.

Also I beleive that people who have hurt more have the potential of a deeper happiness. I envision the happy / pain scale as a slider with the far left representing the worst feelings ever, and the far right representing the best feelings ever, and a state of neutral feelings or boredom directly in the middle.

So when I experience my next bout of "worst pain ever" (no matter where it comes from) it will push the left end of the line further left, marking my growing experience in pain. But this also makes the total line longer as well. Since we all know that "everything is relative" the middle of the line is still the middle of the line (but a new spot, more to the left) and that means the length of the good feeling side of the line just got lengthed too!

I suppose that sounds totally insane but it has worked for me.
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Rolomatic
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Re: Who's been a Beast Warrior the longest?
Reply #33 - Sep 6th, 2008 at 9:34pm
 
Worst? Who knows.

The worst indignity I had to experience was when they (the doctors) sent me to one of those chronic pain clinics. Not only was I out of my element (and mind with pain) but I was wading in a big hot tub with elderly folks that had hip replacements!

I understand their pain but it seems no one in the main stream medical community understands mine/ours CH pain and what it does to our lives.

Until some senator gets our ill, we will be doomed to our own devices.

PF to all!

Rolo…….
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Re: Who's been a Beast Warrior the longest?
Reply #34 - Sep 7th, 2008 at 8:54pm
 
superhawk2300 wrote on Sep 6th, 2008 at 9:16pm:
Quote:
They are survivors and WARRIORS!  Despite their CH, they live their lives to the fullest and are here trying to help the rest of us live our lives as well.


I am with Sandy on this and then some. I think having Ch actually makes my life better than those people who do not as it really helps me keep things in perspective sometimes.

Lots of people I know get rattled to the point of worry at/ about the smallest of things that might not even be true.

If anything, a good, hard CH cycle makes me take the rest of the world's BS with a grain of salt.

Also I beleive that people who have hurt more have the potential of a deeper happiness. I envision the happy / pain scale as a slider with the far left representing the worst feelings ever, and the far right representing the best feelings ever, and a state of neutral feelings or boredom directly in the middle.

So when I experience my next bout of "worst pain ever" (no matter where it comes from) it will push the left end of the line further left, marking my growing experience in pain. But this also makes the total line longer as well. Since we all know that "everything is relative" the middle of the line is still the middle of the line (but a new spot, more to the left) and that means the length of the good feeling side of the line just got lengthed too!

I suppose that sounds totally insane but it has worked for me.


That is a really great post!  I also really liked Sandy C's post, too.  Superhawk, what I like about your post is your viewpoint about pain and happiness.  A friend of mine who is a medical student has always said that misery and happiness balance out, so for all the misery he's been through, he hopes there's someone out there who is really really happy.  And I used to think about that a lot, but now your post tonight is literally changing the way I think about that!  The way he views it means that you're doomed to be miserable or lucky to be happy, but you can't really be both - at least not where you spend the majority of your time.  (ie. May be happy sometimes, but generally miserable or may sometimes be sad, but generally happy...)

But reading your post - I really like how you put that for all the pain we experience, we will know more happiness as well.  I've thought about that in terms of emotion - I know that I can get very emotional about things, and that means that while I get upset easily or depressed easily, I also get very happy easily, excited easily, and so on.  Being emotional means I experience all emotions to a pretty full extent.  But my boyfriend is more middle of the line.  Sure he doesn't get overly depressed or sad most of the time, but he also doesn't feel the level of happiness or excitement about things either!  I almost feel sorry for him - even though I'm glad he doesn't feel deeply sad about things, but he misses out on the extreme joy too.  (He may completely disagree with what I'm saying, but this is just what I've observed about him - he rarely shows the excitement I do over something, which has taken me time to get used to.  We are moving in together next Saturday to a new apartment, and when we saw the apartment the other day, I was about to jump up and down - I was SOOOOOoooo excited!!  Not just about the apartment, but also about this start of our lives together!  He was more like, "Yeah this place is nice.  I think it'll be fine."  So I might say, "But aren't you excited???"  And he'll say, "Yeah, I guess so."  Instead of getting hurt and wondering if the thought of our living together doesn't make him as excited as it makes me, I just realize that he generally doesn't get that emotional about things.  His saying that he likes the place and talking about it positively is a great thing!) /digression done!

But anyway - it's a continuum.  I really like the thought that for the amount of pain we, as CH'ers, know and experience, we also can go that much farther in experiencing joy and happiness.  We know what it is like to be in such severe pain, so the moments without the pain are that much sweeter.  More appreciated.

As horrible as CH and pain are, in some ways they are also a gift.  We might never have opened our eyes so far or realized the strength in ourselves or the joy in those PF moments, and so on.

Anyways - I just liked your post so much that I had to comment!

With regards to the original topic, I have been suffering from CH for 5 years.  Problem is, I have suffered from various headache types since a very young age (earliest I can remember is age 8, but I don't know if I experienced headaches before that).  In January 2001, I got a chronic migraine that has never gone away, and when the CH's started in 2003, it took me awhile to figure out that that severest pain that came and went was a different beast.  It was only actually with the help of some people (BillyJ comes to mind, in particular) in an old chat room closely related to this board (Thanks Mast and Elaine!) that I was able to get it sorted.  At the time, I knew that my one diagnosis wasn't explaining the severe headaches that seemed to come at various times throughout the day, but I didn't know how to effectively get across the message of two headache types to my headache specialist.  My former neurologist (HA specialist) had moved out of the country in 9/03, and I saw my current neuro (at same clinic) in 11/03, and when I first described the CH pain, he said, "There's no point in trying to treat or abort those headaches."  This because I wasn't really separating the two types well in explaining them, and he thought I was describing part of the chronic migraine.  By a hospital stay in 12/03, I knew better to separate out the headaches (ie. one makes me sleep, the other makes me pace/rock; and so on), and I could then tell him based on tracking those severe attacks that they came at the exact same intervals every day (5pm, 7pm, 9pm, 11pm, 2am, 4am).  It was then that he diagnosed me with CH.

I cannot pinpoint the exact time they started.  I had a figure skating accident in March (I think?) of that year, and at the time had a concussion and neck sprain.  In the months after that, I began to notice what at first seemed like shorter lasting severe headaches that came many times a day (20-40 at first even!), but then by the fall had come and were lasting longer periods of time....45-60 minutes usually.  So I think that's really when the CH started.

What always struck me as odd was that I was already seeing a headache specialist and still didn't get an accurate diagnosis right away.  Granted, I only went a couple months without sleeping more than a couple hours a night rather than the years that some people went, but it was long enough.

I truly believe that looking at the amount of years that some here have suffered and yet are still carrying on living life just goes to show that it IS possible to have a fulfilling life in spite of CH.  You just take it day by day, hit by hit, and enjoy all the PF moments you get.  (Or, at least in my case, reduced pain moments I get - since I'm never without some form of head pain.  But hey, I know now to be very happy when my pain drops to a lower level!)

And Charlie has been without CH hits for a number of years now, right?  One of my dad's best friends got CH when he was in law school and was chronic from day one for nine years straight until one day they up and went away.  They weren't so savvy with the med knowledge of CH back then, and his dentist told him the only change he could detect was that his saliva seemed different.  For years, he attributed that as the reason they were gone.  When I was trying to sort my headaches apart, I spoke with him, and he said hearing me talk about CH made him truly remember the pain for the first time in years.  He has not had a CH since 1980, I believe! 

They CAN go away - you never know when one day you'll wake up, and they'll be gone.  If that's not a reason to keep on living and keep on having hope, then I don't know what is!  Prepare for the worst, but hope for the best - that's my motto when it comes to living with chronic pain.

Sorry for the long post!  /rambling done!

Hugz,
Carrie Smiley
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Re: Who's been a Beast Warrior the longest?
Reply #35 - Sep 8th, 2008 at 7:06am
 
Episodic 38 years.

Been 3 years since my last cycle.  Maybe I'm just too old for the sucker!
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Re: Who's been a Beast Warrior the longest?
Reply #36 - Sep 8th, 2008 at 12:03pm
 
Sure, I will play along.  Mine started 15 years ago after suffering a pretty bad concussion in a car accident on interstate 15 in 1993.  Although, I was misdiagnosed until my wife figured it out in 2001, and was not properly diagnosed by a "good doctor" (the first doc I mentioned it to was an ignoramus) until the end of 2002.  I find it interesting how common it is for people to go on with out a proper diagnosis.  I remeber reading a post on here not too long ago from a newbie that had been misdiagnosed for 40 years.  That is simply amazing to go on that long with out proper meds or prevents.  Maybe that should be the next question:  Who has battled the beast the longest while going undiagnosed?

Thomas
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Re: Who's been a Beast Warrior the longest?
Reply #37 - Sep 8th, 2008 at 12:56pm
 
There are many good responses here!  Thanks for the input.

I was blessed to be diagnosed on my first cluster attack by a family practice doctor!  That was in April, 1987, so I lose by a long shot.  I've had migraines off and on since I was about 5 and only rarely suffer from them now.

Back in the era before triptans, I was searching for the "holy grail" of a cure -- and had no life to speak of.  I sought out the "experts" in the field of headaches, even traveled abroad to see a couple of them.

Once I was able to use O2 and Imitrex, I settled into a mode where I lived life to the fullest extent possible between attacks.  I kept the O2 and Imitrex close by, avoided my known triggers (alcohol, gasoline vapors, flashing/flickering lights) as much as possible.

I can understand, and become miserable during a CH, and take a little while to bounce back from a really bad one, but the effects of the headaches no longer are a major influence on the rest of my life.

I've been chronic from the first hit....

Wishing you all well,

Ray
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Re: Who's been a Beast Warrior the longest?
Reply #38 - Sep 8th, 2008 at 8:21pm
 
30 years, began when I was 18.....quick do the math, he's not quite 50 yet!!!! Grin I skipped my fall cycle so I am now officially announcing I have out grown them and will immediately sell my regulator, get all those ugly E-Tanks outta my garage, flush all those pills and be done with all of you! Bye! Wink

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Re: Who's been a Beast Warrior the longest?
Reply #39 - Sep 9th, 2008 at 5:21pm
 
reminds me of my favorite definition of "Relative"

3 seconds with your hand on a red-hot pan seems like an eternity

3 hours with your hands on a red-hot woman seems like 3 seconds
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Re: Who's been a Beast Warrior the longest?
Reply #40 - Sep 9th, 2008 at 6:22pm
 
26 total years here
82-99 Episodic spring and fall only
then 99-present chronic
PLEASE NOTE had two years pain free time "dates unknow"
Terry
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Re: Who's been a Beast Warrior the longest?
Reply #41 - Sep 10th, 2008 at 8:27pm
 
Let's see.....................61 now, clusters started at (about) 26 so that would be ........borrow 10 from the six, 11-6=5, 5-2=3....
that would make it about 35 years for me.

But hey, who counting?
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Re: Who's been a Beast Warrior the longest?
Reply #42 - Sep 10th, 2008 at 8:44pm
 


    21 years.  Chronic the whole time.
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Hurt people.....hurt people.   Think about it.
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