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duchartin
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« on: Nov 29th, 2003, 7:26am »
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Hello everybody,
 
I'm (sadly) a new member of the club and would like to ask some questions to the "experienced" ones. My profile: 39 years old belgian, smoke 1 pack a day (& not willing to stop), daily drinker (half a bottle of red wine & some more beers during the week-end), and, as an atheist, I try to get the best part of each moment of my life because death will be the end, no doubt about that.
 
At first, I was relieved when the neurologist told me I was a clusterhead. I thought I was going to die in the next 3 months before knowing that (brain tumor or something like that...). So, until now, I only had one cycle of 5 weeks (september-october 2003). I have no idea when the next is to come. I'm much more worried now that I found this site. I understand that this is only a beginning.
 
My questions:
 
does the pain worsen with each cycle (I place myself on the 7 lvl of the kip scale at the peak of the pain)?
 
naively, I thought, through what the doc said, that Imitrex was the solution to all the forthcoming problems, but obviously, I'm over optimistic, isn't it?
 
during the cycle, I remember that the only other time I was the struck "out of schedule" was when I absorbed any quantity of alcohol. Is alcohol a recognized trigger?
 
Thanks to exist, because you are right: nobody take it too seriously round here, not even me. Now I do.
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mikeyd
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Re: newcomer
« Reply #1 on: Nov 29th, 2003, 7:36am »
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Welcome to the family!

Yep, alcohol is a trigger for most  of us. One thing we all know is that while it might feel like we are dying...these headaches WON'T kill us without some outside help....lol  laugh
Lots of reading about this, if you type alcohol in the search window you should come up with a few million results....lmao
Enjoy your stay at the Clusterhead hotel!
Once again welcome, you will find a lot of great people here!
PF wishes for yah!
Mikeyd
« Last Edit: Nov 29th, 2003, 7:37am by mikeyd » IP Logged

Waging war with the beast is tiresome & painful but never boring ;-D
BlueMeanie
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Re: newcomer
« Reply #2 on: Nov 29th, 2003, 7:53am »
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Sorry that you're here, but Welcome Aboard !
 
If there is anything at all that most agree with is Alcohol.
 
I strongly urge you to refrain from it when in cycle.
 
Imitrex & O2 for fast relief. Read up on all the preventive meds. There are a ton of them to try.
 
Cannot find any pattern whatsoever: severity, length of time, how often, medication, etc. Anybodys guess.
 
The BEAST just seams to hit when it feels like it.
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Paigelle
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Re: newcomer
« Reply #3 on: Nov 29th, 2003, 7:54am »
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Alcohol is the one thing we can just about all agree on that is a BIG trigger.  Welcome!
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BarbaraD
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Re: newcomer
« Reply #4 on: Nov 29th, 2003, 8:11am »
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Beer is the only alcohol that triggers mine. But I'm not a big drinker anyhow, so when I'm on cafegot, I don't drink. Other times I do if I want one. It's never seemed to matter one way or the other with me. Just as long as I stay away from beer - haven't had one in about 12 years.  
 
smoking doesn't seem to make any difference in mine either.  
 
In fact nothing seems to matter - they just hit and hit and hit.  
 
Enjoy the pain free time and don't dwell on the next cycle.  
 
Hugs BD
 
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jadedgazer
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Re: newcomer
« Reply #5 on: Nov 29th, 2003, 8:19am »
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Welcome aboard, sorry you had to find us. You will find a wealth of information and support here. Search the archives, check out the OUCH webiste, and hang around...this is a wonderful place to learn and lean on in times of need. Give supoort when you can, in return.
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Jackie S.
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Re: newcomer
« Reply #6 on: Nov 29th, 2003, 8:42am »
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hi duchartin
 
Glad ya found us, but the pain sucks, doesn't it?
 
First off I have to say...   Belgium has the BEST beer in the world.  I love Hoegaarden, Leffe Blonde, Kriek, Gueuze, Stella Artois...    sheeeesh!... I LOVE ALL OF THEM!
 
Sorry you won't be able to enjoy them for a while.  For episodics, alcohol is probably the most common trigger.
 
You mention cigarettes.  That topic isn't as one-sided.  For me, they seem to be a trigger.  For many, not at all.
 
I'll try to answer some of your questions from my own personal experience.  Undoubtedly, others will disagree.
 
For me, the pain level hasn't got consistently worse or lighter (for lack of a better word).  Some cycles are worse than others, but I haven't been able to see any trend.
 
Imitrex seems to be the "abortive of choice" around here.  Myself, I've been med-free for 6+ yrs and find that while the pain is more intense at the time, my cycles have got shorter and shorter.  This has been discussed a few times here and I am, in no way, telling you that med-free is the way to go.  I think of it as a personal preference.
 
And again, alcohol is a trigger for MOST episodics.
 
I hope that this helps to answer some of your questions.  The others will be by soon to welcome you.
 
On the left are a number of buttons.  There's enough reading there to keep you busy for a LONG time.  I suggest that you get started.   LOL
 
If you have any more questions, just speak up.
 
Welcome to our nightmare.  I hope your stay is a short, relatively painless one.
 
grant
 
« Last Edit: Nov 29th, 2003, 8:43am by brain_cramps » IP Logged
duchartin
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Re: newcomer
« Reply #7 on: Nov 29th, 2003, 9:34am »
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Thanks to all of you ! If I don't trust my brain anymore, I rediscover my heart ("never walk alone"Wink !
 
Geee... to stop drinking beer, for a belgian, is a bit like quitting pasti for an italian ! Unthinkable...
 
I deeply, SINCERELY, send all my vibes to the "chronics", I cannot understand how you cope with the bastard on a daily base !
 
to Grant: HOW do you know all those ??? By the way, I'm hooked on Leffe, the best money can buy !
 
You all gave me more help in 3 hours than the medics in 3 months. Love you all. And I hope that I will, in return, be able to help some people sometimes.
 
I FEEL GREAT !
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Re: newcomer
« Reply #8 on: Nov 29th, 2003, 9:59am »
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Duchartin, Welcome to the House of Pain. Everything you would ever want to know about CH can be found here.
 
I absolutely quit drinking because of my CH's.
I believe my tolerance level for CH has gotten lower as i've gotten older. I used to could just tough it out. I find that very hard to do now. Maybe they are worse, I don't know.
I find Imitrex to be a lifesaver when i need to attend some kind of public function, but the aftereffects stink, ie...Rebounds from hell!
 
Patrick  Smiley
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Prense
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Re: newcomer
« Reply #9 on: Nov 29th, 2003, 10:42am »
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Welcome aboard!
 
Absolutely, alcohol is a major trigger for an attack for me.  Not all alcohol...I have not gotten up the nerve to experiment with many different types, but beer, wine and rum cause an attack for me about 80% of the time.  I have drank mixed drinks with vodka and not been hit yet (knock on wood), but not enough to rule it out as a trigger yet.
 
There has been some conversation floating around saying Imitrex is responsible for causing longer cycles for episodics and also increased attack frequency...even though it works for killing an attack.  As for me, it doesn't increase frequency, and I cannot answer the longer cycle question from experience...I am chronic.
 
Regards!
Chris
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duchartin
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Re: newcomer
« Reply #10 on: Nov 29th, 2003, 11:06am »
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but the aftereffects stink, ie...Rebounds from hell!
 
Aftereffects ? Does everybody have them, or is this also a question of individuals ?
 
thanks, again & again.
 
PS: I'm a lousy PC-user, forgive me.
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Prense
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Re: newcomer
« Reply #11 on: Nov 29th, 2003, 11:16am »
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[quote author=duchartin link=board=general;num=1070110934;start=0#10 date=11/29/03 at 11:06:01Aftereffects ? Does everybody have them, or is this also a question of individuals ? [/quote]
 
Seems to be an individual response.  However, there seems to be a large number that gets increased frequency and/or longer cycles.
 
Hope you don't!
 
Chris
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Re: newcomer
« Reply #12 on: Nov 29th, 2003, 1:44pm »
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on Nov 29th, 2003, 11:16am, Prense wrote:
Seems to be an individual response.  However, there seems to be a large number that gets increased frequency and/or longer cycles.

I'm still unsure about the rebound/frequency of using Imitrex. I say that because my last cycle 8 months ago only lasted 7 weeks and all I used was Imitrex. This cycle is 12 weeks so far and still only using Imitrex.  
 
Can't see the doc for 3 weeks, but if these don't end, i'm gonna get some O2. Was gonna wait until next cycle to go back to O2, but thought this cycle would be over by now.
 
From all I read, you got to just keep mixing it up. The BEAST will figue you out otherwise !!!!
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thomas
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Re: newcomer
« Reply #13 on: Nov 29th, 2003, 1:51pm »
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Welcome aboard.  The pain changes on it's own whim.  Sometimes worse, sometimes not as bad.  The beast does whatever it damn well pleases.  I've come to the conclusion, that as far as I am concerned, the longer the cycle the worse the pain - whether the pain is really worse, or I'm just worn out - I don't know.
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Mark C
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Re: newcomer
« Reply #14 on: Nov 29th, 2003, 8:13pm »
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Alcohol is absolutly a trigger, just like nitro-glycerine for me. Read as much as possible, here is a great place to start. Sorry you need us but glad you found us.
PFDAN's
« Last Edit: Nov 29th, 2003, 8:16pm by Mark C » IP Logged


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Charlie
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Re: newcomer
« Reply #15 on: Nov 29th, 2003, 8:51pm »
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Welcome to the fold, Duchartin. Feel free to rant, rave, and of course contribute and ask questions.  For me, alcohol was not a trigger but I drank very little.  
 
I too, thought I was going to die. I think we all have that experience. Learning what this horror was didn't make it any easier.  I will tell you that I have been pain free for 12 years after 22 years of dealing with it.  Other than the possibility of age, (57) I have no idea why the long remission.  
 
The board members smoke at twice the national average but there is no definite proof that it is a trigger. I smoked too but the timing is all wrong. The headaches lasted 11 years after I quit in 1980. It does save me nearly $3,000 a year though.
 
Stick around and read all you can. These people know what they're doing.  
 
Charlie
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Re: newcomer
« Reply #16 on: Nov 30th, 2003, 6:45am »
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Welcome aboard! Smiley
 
I'm sorry that you have CH, it's a nasty beast to have.. Sad
But I am glad that you found us, because this place is a blessing to have!  Smiley
They say that every dark cloud has a silverlining and with CH, it's Ch.com.
 
Alcohol is a trigger and what I have read, many clusterheads also smoke. But in my case, I didn't drink that much before CH (and meds made me sober) and I have never smoked, but here I am... Wink
If it's any conselation, according to what I have read, quitting smoking has very little affect on the pain nor the CH cycle.
 
 
Best wishes & PFdays,
sandie99  
 
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Re: newcomer
« Reply #17 on: Nov 30th, 2003, 4:48pm »
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Of the bazillion or so triggers people list here I will bet a months pay that alcohol is the one most common amongst sufferers.
 
Followed closely by discussions of religion or politics.
 
 
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Re: newcomer
« Reply #18 on: Nov 30th, 2003, 5:02pm »
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Welcome to the Nut House... Grin
 
Cathy
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