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        Cluster Headache Help and Support >> Cluster Headache Specific >> Supporter looking for answers from sufferers
        
(Message started by: the_watcher on Feb 13^th, 2007, 8:25pm)

Title: Supporter looking for answers from sufferers
Post by the_watcher on Feb 13^th, 2007, 8:25pm

I'm new to this board, but an old hand at being a supporter (40 years). I am looking for some insight from you the sufferers. Do any of you consistently do things knowing they will trigger headeaches (ie..smoke, eat certain foods, etc.)? If you do, can you explain to me why you do things that you know will cause you horrific pain? I am not being ugly; just want to understand. Looking for a way to understand....my husband isn't giving me an answer. Really important to me.

Title: Re: Supporter looking for answers from sufferers
Post by E-Double on Feb 13^th, 2007, 8:30pm

read the reply on the supporters board.

Title: Re: Supporter looking for answers from sufferers
Post by Brewcrew on Feb 13^th, 2007, 9:19pm

The only thing that triggers a hit for me in cycle is alcohol. I've more or less stopped drinking, even out of cycle.

Quote:

can you explain to me why you do things that you know will cause you horrific pain? I am not being ugly; just want to understand. Looking for a way to understand....my husband isn't giving me an answer. Really important to me.

If you figure this one out, you should give yourself a Ph.D. and hang a shingle. I guaran-damn-tee you will make millions and millions of dollars.

Do not take out your frustration on your husband. He doesn't know the answer to this either.

You are looking for an answer that, to this point in time, does not exist.

Title: Re: Supporter looking for answers from sufferers
Post by Guiseppi on Feb 13^th, 2007, 9:40pm

For me it's because I get so angry with the beast I decide he can't run my life and I'll do something stupid like having a drink. Just to show the beast it can't win. It can make my head hurt, but it can't ever win. For me, that's really important. 47 year old, 29 year sufferer. I know it's not logical but I hope it helps you understand. And bless you for being a supporter, honestly we do know how hard it is on you.

Guiseppi

Title: Re: Supporter looking for answers from sufferers
Post by Turts on Feb 13^th, 2007, 10:48pm

Hi the_watcher

firstly, welcome to the board, and i hope you can stick around for a while.

secondly, Im with Guiseppi, i do eat/drink/(smoke, if thats your thing, ;;D ) things that could trigger a hit. And i do this it seems to spite the beast.

as you would seen on other posts, we speak about Clusterheadaches in the third person, the beast, the demon etc in an attempt to distance ourselves from it. As it cant be apart of us, that would be too depressing, it has to be seen as a third party that is attacking us or we would go insane knowing that its actually our bodies do this to ourselves.

and naturally, like any enemy or competitor we do things to annoy and spite them, to show that they dont/cant/wont control our lives and what we do with it.

sorry long winded,

so tonight, i will be going home, crackin open a beer and making a toast-

here i am, come and get me, im not changing my life because of you!

just my perspective

Turts

Title: Re: Supporter looking for answers from sufferers
Post by Guiseppi on Feb 13^th, 2007, 11:06pm

I never realized how we all use the third person...that's interesting!

Guiseppi

Title: Re: Supporter looking for answers from sufferers
Post by Ob1kanobee on Feb 13^th, 2007, 11:15pm

I think it is just human nature to take for granted things that were given to us for free, like our health. If it is alcohol you are reffering to, maybe alcoholism is part of the problem? Some of it could be habit.

I suspect that most of the ones with CH would do this if they had a good abort that worked for them like Imitrex or Oxygen. I mean hey, swig down a few beers or so and if I get hit, I'll just jab myself with some Imitrex.

In my opinion, if you don't have an abort method that works for you like the ones mentioned, I don't know why anyone would do something that would trigger the beast.

Does your husband have an abort method or drug that he uses that works well?

Just thinking out loud here......

Title: Re: Supporter looking for answers from sufferers
Post by georgej on Feb 14^th, 2007, 12:51am

I'm a forty-year clusterhead myself, an episodic.

You don't say whether he's episodic or chronic, so I don't know how much is defiance of the beast on his part, or how much is simply...."to hell with it". I know, as an episodic, that there are certain things I cannot consume in cycle. For me, it's alcohol. Can't touch it during a cycle without triggering a headache, so I don't. Tobacco doesn't affect me either way, and I don't have any food triggers. The only other things that trigger me are the seasons and REM sleep. Can't do anything about those.

Just speculating, but I would guess that for chronics, the defiance or "to hell with it" factor might carry more weight--after all, as an episodic, I know that the cycle will end, and I'll be able to have a beer later on. Just not now. Chronics don't have that luxury. CH is woven into the fabric of all their days. I suppose they might be more inclined to say--"to hell with it--I'm going to do it anyway."

FWIW.

Best wishes,

George

Title: Re: Supporter looking for answers from sufferers
Post by burnt-toast on Feb 14^th, 2007, 5:15am

Alcohol is a trigger that I've learned to avoid but have to admit that on very very rare occasions I try to sneek in a beer. I usually won't get to finish even one and know what the result is going to be but try anyway. These lapses in judgement become reminders of why alcohol is to be avoided. Each eminder last about 6 months or so before I get brave or maybe that's stupid enough to try again. :-/

I am fortuante that cigarettes and foods are not triggers for me.

Strong finishes (non-water based) paints, stains, polyurathene and being outdoors in temps. below about 15 degrees are also triggers but I can't easily avoid these and just deal with the results.

Tom

Title: Re: Supporter looking for answers from sufferers
Post by chewy on Feb 14^th, 2007, 6:51am

Depends.

If I'm out of cycle I dont think about triggers and just lead a normal life enjoying whatever I enjoy.

In cycle its a differant story. I avoid everything that is, or could possibly be, a trigger

Title: Re: Supporter looking for answers from sufferers
Post by the_watcher on Feb 14^th, 2007, 6:52pm

Thanks ya'll for the insight. My husband is episodic and will avoid beer like the plague during a cycle, but not other things that he knows will give him a headache. Example, one time he just had to have some steak sauce (whatever it is, just a little won't hurt according to him). Within 20 minutes he was in hell. Still wants stuff just because he can't seem to control his urges. Some background on him; he really needs to be studied. He's an eating machine. He can eat anything in any amount (ie big bag of M &M's) and never gain weight. He's all muscle. So he has never had to deprive himself of foods for weight reasons. I've told him it a good thing he was born a man, cause he could never have handled being a woman and being deprived for reason of weight gain or pregnancy, etc.

Anyway everybody knows how exhausting it is to go to that place where your whole being is focused on this: don't think, don't move. That black hole. Everybody knows how much it takes out of you to just be there in that state, to get away. My husband learned long ago to not dance with the beast; it will only make it worse for him. He loses control if he dances and we are off the the emergency room if I can get someone to help me get him off the floor. Who else knows where that place is?

Title: Re: Supporter looking for answers from sufferers
Post by georgej on Feb 15^th, 2007, 12:41am

on 02/14/07 at 18:52:34, the_watcher wrote:

Anyway everybody knows how exhausting it is to go to that place where your whole being is focused on this: don't think, don't move. That black hole. Everybody knows how much it takes out of you to just be there in that state, to get away. My husband learned long ago to not dance with the beast; it will only make it worse for him. He loses control if he dances and we are off the the emergency room if I can get someone to help me get him off the floor. Who else knows where that place is?

Interesting how a lot of us long-timers learn to cope with a hit in similar ways. I almost never "dance" anymore. I learned that while it may not make the pain worse, my reactions could sure make the whole experience worse.

It's not easy to learn not to fight (I think it's a natural physiological reaction to unrelenting pain) but it's worth it. Learning to handle a hit is as valuable as any medication.

That said, if the thing ramps up to an 8 or above--forget it. I dance.

Best,

George

Title: Re: Supporter looking for answers from sufferers
Post by Spoticus on Feb 15^th, 2007, 7:11am

I have only had the two cycles so far, the first lasted just under 3 months, the second was a bit under a month. The second one really really messed with me though, I had back to back hits for 16 days before i collapsed from exhaustion. So anyway on to the point. Between the first two cycles, after some time I went back to living my life normally. Almost actually forgot about CH, then out of the blue it was back and I guess I had to truly accept I had them.

So while personally I haven't really found anything that triggers them reliably in cycle (exercise does, but once exhaustion starts to kick in who is really active mid cycle anyway?). However pretty much everyone seems to agree alcohol can trigger them, so I have stopped drinking completely now. I am interested to see if there is any noticeable difference between cycles.

While I rarely drank anyway, I am a mid 20s Aussie male. And I must say it does suck not sharing a cold beer with your mates while you watch the cricket, or getting on the piss for a birthday party etc. Frankly it feels borderline unAustralian :-/ Mainly I guess its the weird looks I get from people that know I used to drink, but don't know about my CH. And I certainly don't try and explain it to every other person I know.

Really though thats all very trivial compared to having to go through another CH cycle, which is exactly why I am giving it a go.

Anyway, just wanted to thank you for being a supporter for such a long time. You must have a very fortunate sufferer :)

Title: Re: Supporter looking for answers from sufferers
Post by the_watcher on Feb 15^th, 2007, 7:12pm

Hey,
It really is hard to read about everyone's experiences with the beast. I have gotten to the point that it is so hard to even read about it in books. I just get so tense. Kinda like that old saying "someone walking on your grave" and I don't even have the headaches. It's hard to be on the outside looking in and being helpless to fix anything. I have had migraines (not recently) so I kind of have a small idea. Not a real comparison though. Jeez, I'm getting support feelings for ya'll. I guess that make's us one big family.....

Georgj, so how long have you had ch? Anybody out there think they have outgrown them? Jeez, just how long does this hell have to go on? 40 years ought to be paying his dues long enough!!

Title: Re: Supporter looking for answers from sufferers
Post by chucknot on Feb 16^th, 2007, 1:06am

Yeah what a conundrum; on the good side it won't kill you and on the bad side it won't kill you. Not to be negative or trite...but.

It is so great that it you are here on this site. My wife found this site as well. And here you are trying to learn how to cope and help. You do not think so, but that is remarkable. And if that is remarkable then necessarily sso are you. There is no smilie bowing with their hat off...so here it is. Hats off to you.

Title: Re: Supporter looking for answers from sufferers
Post by thebbz on Feb 16^th, 2007, 2:43pm

[smiley=bow.gif] [smiley=bow.gif]

Title: Re: Supporter looking for answers from sufferers
Post by Mattrf on Feb 16^th, 2007, 2:57pm

on 02/16/07 at 01:06:28, chucknot wrote:

I have to agree, I have tried to get my wife to come here and get support for herself and learn but she says that it is just too hard to watch me and readying all the stories would just make her have a harder time with it. Guess everyone deals in their own way, don’t get me wrong she is a great supporter and I do not know what I would do without her she just won’t come here is all and I am not going to try and make her. Your being her is a huge thing so my hat is also off to you.

Matt

Title: Re: Supporter looking for answers from sufferers
Post by the_watcher on Feb 16^th, 2007, 7:21pm

Aw shucks ya'll. Thanks! THBBZ, you the man. Purple is my favorite color.

Title: Re: Supporter looking for answers from sufferers
Post by the_watcher on Feb 16^th, 2007, 10:06pm

I have lurked around the edges of this board for years, reading, but never "jumping in". I didn't know what I was missing. The "outside world" doesn't have a clue what it's like when I say my husband's headaches are back. It's just so nice to be able to vent with people that know exactly I'm talking about. Cause the outside world looks at you and they don't really care; or they want to bring up how bad their hangnail was for them. Yeah, must have been a real b**ch for you..... Did I say that; somebody slap my hand!

Title: Re: Supporter looking for answers from sufferers
Post by chucknot on Feb 17^th, 2007, 12:14am

[smiley=bow.gif]

Well, I stand corrected...and I like that smilie a lot...sort of how I think my boss should greet me in the morning.

Title: Re: Supporter looking for answers from sufferers
Post by seasonalboomer on Feb 17^th, 2007, 5:57am

hey watchie, thanks for being a supporter.

nothing worse than when someone states the obvious so plainly as you did in your opener on this thread ;)

But, I'll jump in with the crowd that says to hell with the beast controlling my life.

My most consistent trigger, when in cycle, is overheating from exercise (in my case running). But this condition won't make me stop. So I plan my running as to the length of time and distance that gets me home within 5 minutes of when things should start happening and then grab a can of red bull from the fridge and bee-line to my O2 closet. 10 minutes later I emerge, hydrated, oxygenated and ready for a shower.

Mind you, if I didn't have an effective abort like O2 I would not tempt the beast and I'd be watching TV and laying around through my whole cycle -- trying not to do anything thatwould hint at a headache.

As for alcohol. It used to be an automatic for me when I was in cycle. Doesn't seem to be doing it as bad the last couple of cycles. But again, if I don't have access to O2 or imitrex, I ain't drinking.

I agree with those that almost feel as though that since they have to deal with CH, they will not let it control more of their life and doing the things they love to do (even if that is drinking beer).

But you have to own the behavior as a sufferer. If you're in cycle and you're going to a family wedding and you leave the O2 at home and drive 2 hours to a wedding and choose to start drinking. It's our own damn fault if we're regretting the behavior and ruining the event for ourself and our supporter.

scott

Title: Re: Supporter looking for answers from sufferers
Post by clusterwife on Feb 20^th, 2007, 11:41am

The human brain stives for more. We are not a content species. More is better, less is worse. So, if one drink is good, another has to be better. If we didn't do what we aren't supposed to do, we'd be perfect. So, through this, we procrastinate, eat/smoke/do the wrong/bad things that get us into trouble. Instead of focusing on the bad karma, look at the bright side! We are ALIVE! Leah.

Title: Re: Supporter looking for answers from sufferers
Post by Brewcrew on Feb 20^th, 2007, 4:51pm

on 02/20/07 at 11:41:30, clusterwife wrote:

The human brain stives (sic) for more. We are not a content species. More is better, less is worse. So, if one drink is good, another has to be better.

Huh?

I am very content. I almost always derive pleasure from a first drink, and almost always regret having a second.

Best not to make general statements that are all-inclusive. They're almost always untrue.