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   Author  Topic: how long are your episodes  (Read 1638 times)
macklessdaddy
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how long are your episodes
« on: Nov 14th, 2005, 7:17pm »
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HI everybody im new to the forum so hopefully im posting in the right section   ,my ch usually last about 7 to 10 days usually once a year but this time is after a 3 year hiatus,so how long does your episodes last,also i cant work when i have ch ,how do you guys work with such pain
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Re: how long are your episodes
« Reply #1 on: Nov 14th, 2005, 7:31pm »
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Mine lasted 30 straight years until last year....the fuckers just went away...Go figure.
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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.

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Re: how long are your episodes
« Reply #2 on: Nov 14th, 2005, 7:34pm »
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The first decade consisted of 2 brief cycles lasting approximately 1 month.
 
This past cycle is 20 months and going strong.
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Re: how long are your episodes
« Reply #3 on: Nov 14th, 2005, 7:37pm »
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now correct me if im wrong but when you say 30 years do you mean everyday you have these damn things ,holy spit I better stop complaining then
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Re: how long are your episodes
« Reply #4 on: Nov 14th, 2005, 7:42pm »
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on Nov 14th, 2005, 7:37pm, macklessdaddy wrote:
now correct me if im wrong but when you say 30 years do you mean everyday you have these damn things ,holy spit I better stop complaining then

 
That's pretty much what he meant brother.
 
One attack is too much!!
 
I'm in a 20 month cycle yet I have gone 3 days (dare I say) without a full blown cluster. Shhhhhhh don't tell Wink It's the first time in a LONG while since I've gon CH free. We shall see.
 
Don't worry about "complaining"
 
We all have to deal with this CHit and some have short cycles while others are chronic and each "suffers" and lives in their own way.
 
We are here to learn from, support, and teach eachother.
 
Period!
 
Welcome to the show!
 
E
 
edited so that the department of education does not revoke my certification laugh
« Last Edit: Nov 14th, 2005, 7:43pm by E-Double » IP Logged

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Re: how long are your episodes
« Reply #5 on: Nov 14th, 2005, 7:43pm »
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on Nov 14th, 2005, 7:37pm, macklessdaddy wrote:
now correct me if im wrong but when you say 30 years do you mean everyday you have these damn things ,holy spit I better stop complaining then

 
No, sometimes I would be pain free for 3/4 days....I even went 7 days pain free once.
 
Having chronic CH has an advantage.....you never fear that the pain is coming......cause its always there Grin
 
Pain is pain, Bro.....you feel it just like everyone else and you have a right to complain....thats why we are here!!
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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.

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Re: how long are your episodes
« Reply #6 on: Nov 14th, 2005, 7:45pm »
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on Nov 14th, 2005, 7:43pm, Jonny wrote:

 
Having chronic CH has an advantage.....you never fear that the pain is coming......cause its always there Grin

That's my favorite part Grin
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Re: how long are your episodes
« Reply #7 on: Nov 14th, 2005, 7:47pm »
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For the first twenty or so years that I had them, an episode would show up once a year for 4-5 weeks, in the spring or fall.  For the last six years, there has been more time between--more like 18 to 24 months.
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Jonny
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Re: how long are your episodes
« Reply #8 on: Nov 14th, 2005, 7:52pm »
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on Nov 14th, 2005, 7:47pm, pattik wrote:
For the first twenty or so years that I had them, an episode would show up once a year for 4-5 weeks, in the spring or fall.  For the last six years, there has been more time between--more like 18 to 24 months.

 
Hey EX2, shes one that fears the arrival.....LOL Grin
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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.

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Re: how long are your episodes
« Reply #9 on: Nov 14th, 2005, 8:05pm »
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on Nov 14th, 2005, 7:52pm, Jonny wrote:

 
Hey EX2, shes one that fears the arrival.....LOL Grin

 youbetcha! Grin
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Re: how long are your episodes
« Reply #10 on: Nov 14th, 2005, 8:10pm »
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it progressed from 2 episodes a year, about a month long eaCH...
 
to 4 episodes a year, about 2 months long eaCH...
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Jonny
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Re: how long are your episodes
« Reply #11 on: Nov 14th, 2005, 8:11pm »
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on Nov 14th, 2005, 8:05pm, pattik wrote:

 youbetcha! Grin

 
I now join those ranks, babe....after so much time PF I am in fear like you read about that this shit will return like a frieght train.
 
Its not a good feeling....one that I never had before Shocked
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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


macklessdaddy
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Re: how long are your episodes
« Reply #12 on: Nov 14th, 2005, 8:23pm »
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wow this is some deep CHit  , i pray for you all  but i got a question  WHY US DAMNIT, WHAT DID I DO TO DESERVE THIS
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Re: how long are your episodes
« Reply #13 on: Nov 14th, 2005, 8:27pm »
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on Nov 14th, 2005, 8:23pm, macklessdaddy wrote:
wow this is some deep CHit  , i pray for you all  but i got a question  WHY US DAMNIT, WHAT DID I DO TO DESERVE THIS

 
I stopped asking that a long time ago.......Learn how to manage your pain the best you can and get on with your life, thats all you can do and this is the best place to do it!!
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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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Re: how long are your episodes
« Reply #14 on: Nov 14th, 2005, 8:29pm »
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Jonny,
 
You know...there is also the possibility you may enter the ranks of Charlie....
 
I'll tip the glass with you in Milwaukee Bro..(but no beer for this gal...)
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Re: how long are your episodes
« Reply #15 on: Nov 14th, 2005, 8:31pm »
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I keep asking myself the same question!
 
As for me, CHA's for about 11 years now - started late in life at the age of around 40.  So far one episode every 3-4 years lasting about 12 weeks each time
 
My last episode was much more tolerable and shorter in terms of intensity and duration thanks to high-dose Verapamil and a Prednisone Taper.  Sure took a long time to wean off the Verap, though.
 
My sincere hope is that my episodes stay as far apart as they are.  I can't even think about one a year, let alone the chronic thing.
 
Kris
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Re: how long are your episodes
« Reply #16 on: Nov 14th, 2005, 9:00pm »
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My clusters last from 1 to 4 months, and for the last 4 years or so they have all started in October. My episodes last from 15 minutes to 3 hours. I have 1-3 a day.
 
How do I deal with the pain at work? I have been really lucky not to have more than a k6 at work this year. For the bad ones I take a long washroom break and sit in the stall until it becomes less severe.
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Re: how long are your episodes
« Reply #17 on: Nov 14th, 2005, 9:02pm »
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on Nov 14th, 2005, 8:23pm, macklessdaddy wrote:
wow this is some deep CHit  , i pray for you all  but i got a question  WHY US DAMNIT, WHAT DID I DO TO DESERVE THIS

 
You are obviously one of the righteous folks that satan is trying to overtake
 
or........
 
You have forgotten to wear your tinfoil hat like most of us have learned.
 
Seriously though, you were probably a real CHitty kid....
 
J/k
 
We're born with them dude.
It's just a matter of time until they surface.
 
Be well and stop questioning it!
 
E
 
on Nov 14th, 2005, 7:52pm, Jonny wrote:

 
Hey EX2, shes one that fears the arrival.....LOL Grin

 
Sounds like a teaser to a thriller.
 
Fear the arrival!!!!!!!! Shocked
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Space in-between them
Gonna take a breath and try again.
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Re: how long are your episodes
« Reply #18 on: Nov 14th, 2005, 9:14pm »
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Mine are normally 6 weeks, but so far this year they've lasted about 10 or so.  They seem to be getting better (knock on wood), just shadowing a bit here and there.  So, maybe they're over.....don't tell anyone!
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Re: how long are your episodes
« Reply #19 on: Nov 14th, 2005, 10:48pm »
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Shortest was 8 weeks. Longest was 18 weeks. Once or twice a year. 2-4 times a day.  
 
Lucky for me I'm in my longest remission ever in 29 years. Almost 2 years if it last a little longer.  Shocked
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Re: how long are your episodes
« Reply #20 on: Nov 14th, 2005, 11:05pm »
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I too have had CH for 30 years only episodic. Cycles last 4 months to 3 years. Unlike jonny though I got lots of breaks between cycles
My cycles seem to come whenever but had a nice 1.5 year break, just started a new cycle a few weeks ago
 
It s at the start of acycle that its hardest to work. but you settle in after a bit and just learn that you gotta get up and go as soon as the pain subsides or your gonna be miserable. (convincing myself here)
 Theres allways pain free moments for most to make the most of dont waste them.
However now and then you have to blow off part of a day like today.
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Re: how long are your episodes
« Reply #21 on: Nov 14th, 2005, 11:10pm »
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on Nov 14th, 2005, 8:11pm, Jonny wrote:

Its not a good feeling....one that I never had before Shocked

 
No, it's not a good feeling.  But now I just keep myself armed and  
dangerous ready with an arsenal of a great regulator, masx, kudzu, melatonin, etc,etc,etc... Cool
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Re: how long are your episodes
« Reply #22 on: Nov 14th, 2005, 11:12pm »
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Episodic, every 3 years like clockwork for 60 days, except for last yer, and maybe this year. Next year too. I suck at this for a Beta Tester.
 
on Nov 14th, 2005, 8:23pm, macklessdaddy wrote:
WHAT DID I DO TO DESERVE THIS

How the hell should we know?  
You _obviously_ sinned grievously in this, or a past life. That's the only explanation I can think of. Lick Spittle from the Boot of God, read everything you can, pay attention to the few nuggets of wisdom randomly interspersed, and you might come out ahead of the game.
 
Cure or curse. The letter "s" makes the difference.
You figure that one out.  
 
Too deep for me.
RJ
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Re: how long are your episodes
« Reply #23 on: Nov 15th, 2005, 1:38pm »
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I cycle usually once per year, for 6-8 weeks. The last cycle lasted 12 weeks, and came after 3 years PF time. No idea when the next one will come, nor how long it will last. All I know is that it WILL come, so I make the best of life while I'm PF.
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Re: how long are your episodes
« Reply #24 on: Nov 15th, 2005, 3:40pm »
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I'm episodic, cycles lasting anywhere from 9 weeks to 16 weeks, but happening every 1-1/2 to 2 years, so I do enjoy quite a bit of pain free time.  
 
And, you didn't do anything to deserve it.  You were born with a broken hypothalmus, just like the rest of us.  
 
As far as being able to work while in cycle, I've never missed one day of work - maybe have had to take a few "breaks" during the day lasting from 15 to 30 minutes, but have never, ever said I could not work.  Unless you are in CONSTANT pain, 24/7, a cluster hit should not prevent you from going to work, unless it's a fear that you will get a hit while at work.  I always carry my arms against this beast, and I keep some necessities in my workplace.  The most important thing to keep your job is to tell your employer what is going on with you, and that if you get hit, you will need a little time until the hit passes.  If he doesn't really believe you, let him witness a full blown hit - it was embarrasing, but it worked for me.  The hit doesn't last all day long, unless, as I said above, you are in pain 24/7. In that case, it probably is not CH.
 
Just my  twocents
 
Sandy
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