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New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Does it have a life of its own
(Message started by: Sisyphus on Nov 16th, 2004, 11:35pm)

Title: Does it have a life of its own
Post by Sisyphus on Nov 16th, 2004, 11:35pm
I just wonder if any of you feel this sometimes. Whenever I have done anything that is remotely successful in stopping an attack it seems that the pain waits, regroups and finds a way back with a really viscious response. It's almost as though it says, "hey look, you have to have this and if you try and avoid it I am going to really give it to you". I am currently using the sumatriptan injections (one left) and when I run out I am really dreading what is going to happen. I'll deal with it, I always have, but I'm sure you know that feeling of "oh no, not again" as it kicks in. It must be me making a bit of a meal of it but do any of you get that sneaking suspicion its got a life of its own? Jack.

Title: Re: Does it have a life of its own
Post by marcelonyc on Nov 16th, 2004, 11:43pm
You know I suspect lots of things when it comes to this beast. It's hard to rationalize this kind of pain. it really feels humanly impossible to experience that awful grind. Yet we do. And to try to explain it to others only sounds like fiction. I play all kinds of games with myself during an episode, until i am in tears during an attack. Followed by that dizzy dopey smile and giidiness I get when I know that the attack is on it's way out?? The term moodswings does not even cut it. It's like psychotic disorder.

Title: Re: Does it have a life of its own
Post by Sisyphus on Nov 16th, 2004, 11:51pm
yeah its a strange one marcel, the games i try and play to keep from focusing on the pain. That is my key move, to try not to mentally grab hold of the pain but to direct my consciousness elsewhere. Not a great strategy I know, and in the face of this thing it only works for moments before I am sucked in. It's strange, but as it wears on, after the days become weeks, as my strength withers until I am just moving from one exhaustion to the next, that's when I am vulnerable to all sorts of ideas about this condition. Like you though, the absolute relief in feeling it pass makes Disney's Goofey look like Einstein next to my face. jack.

Title: Re: Does it have a life of its own
Post by Ronny on Nov 17th, 2004, 3:20am
Hi,

It sure does have a life of its own, whenever you think you got him by the balls, "it" tries something completely different.


    Ronny.

Title: Re: Does it have a life of its own
Post by Testy1 on Nov 17th, 2004, 4:31am
Absolutely. The thing is alive and concious and extremely malevolent!  ;;D
I personify the thing. "All right you bastard! You know you're going to lose, you know you're going to be gone in a bit so why not just give up and go away now?"

I don't think it actually helps the pain but it does make me feel a bit better. It also makes me look like a lunatic but so what? The thing that really helps me bear it the most is remembering that it is just pain. I'm not going to drop dead, there are no mysterious tumors growing etc.

Regards

Jack

Title: Re: Does it have a life of its own
Post by Tetris-addict on Nov 17th, 2004, 8:24am
Tell me about it.

I had no zomig for 3 years, and never got hit terribly bad

then I set up an appointment with a doct for a "just in case" prescription....

It tormented me the entire week before the appoinment,
and even showed up to impress the doctor.

The minute the pharmacy passed the pack of pills
to me, it ran away...
for two whole weeks....whew.

Now of course it's back but at low levels, thank god.

Of course I am still hording the med for a really big attack....lol...makes no sense...but ahh well.
Living to the fullest....despite the monster.

[smiley=laugh.gif]

Title: sed to Re: Does it have a life of its own
Post by survivor13 on Nov 17th, 2004, 8:35am
i've had alot of success with the cold wet rag tech., (see my post at treatments) but you must act quickly. i have my brain now programmed, when i'm sleeping, at the first warning, i sit up grab the wrag and turn at AC up. i used to try to stay asleep, but 90% of the time you'll have 30 mins to 1 hr. of hell.

Title: Re: Does it have a life of its own
Post by Mac_Muz on Nov 17th, 2004, 8:50am
Yeah I'ld say so... You make a change and it makes a change. My first came on around 6 pm, so I would go take a nap to avoid it, but then it moved to 7:30pm and so I quit with the nap, and it changed to 10 pm, So I went to bed at 9.. Then it stopped, as a trick, and came right back at 11 pm when I went to bed..

Man I'ld just lay down and close my eyes and that sting would start. I'ld get up swear out loud and get dressed headin for my shop, and that welders O2 tank, and sit a breath....

The more over tired I got, the nore I hated it. The more depressed I got the harder I worked at going to WAR with it...

As suddenly as it came it went...

So I end up here, and since it was my first and only bout, which lasted a mere 8 weeks, more than a few consider me crazy for my tude'.

That is fine by me, after all I am me, and they are they.. What works for them is fine by me, and I hope that idea works the other way around.

I have been in hell before and I will be again, and I son't mean clusterhead hell in this particular instance, so I tend to take things pretty much head on.

A CH is just a nasty thing to deal with, like many other nasty things to deal with except they really hurt.

before I knew what a Ch was, and ever knew other suffered from it, I had the same tude', but wondered what the hell was wrong with me.

The fact that finding out others had it too, just hardened me more to the fight. I came here and said that bit and many laughed at me. As you will likely see the laughing will start again too! Damned if I care, and besides everyone needs a good laught anyway.


I understand that some folks will be nearly crushed, while that there are others like Johnny and Super pain who are not crushed, but are not quite as angery as I get..

I am angery with the demon, and I don't call it the same name as most.. Now I don't go balistic and smash stuff either, it is all a head game to beat back the pain and take back the controll.

There will be those who say it can't be done.. They might be correct for all I know, but that won't stop me from trying. As far as I am concerned the demon is still with me, but hidding, and waiting for me to allow my guard down..

I had the idea Summer / Fall would be the return as this began in Winter / Spring, so I guess I get to wait a bit more.

Often times I get that familar sting. got it right now, but I don't think about it much, and for a long time now it doesn't do more than that. I know what it means though, and that damned demon is just droppin a calling card....

It won't matter to me if you don't do what I do.. What I believe is only that, but being beaten is something I never was very good at.

So have a laugh if it suits ya's.. I gotta drive my post count up anyway... LOL (as if I care)  Mac

Title: Re: Does it have a life of its own
Post by Ruth on Nov 17th, 2004, 8:53am
yep, and it doesn't give a hoot about the life it is messing up!

Title: Re: Does it have a life of its own
Post by nani on Nov 17th, 2004, 9:27am
Mine lives in one of the empty spaces in my head and sits at the bar laughing at me. It takes great pleasure at keeping me guessing when it will come back to torture me again. It's a sadistic little mofo...and it lives off of my contempt of it.  >:(

Title: Re: Does it have a life of its own
Post by Sisyphus on Nov 17th, 2004, 9:40am
Mac_Muz, you are way out there but you know, I think I understand where you are at. Only think mind you, wouldn't be so arrogant as to say know. The thing is, when I started this question off I wimped out a bit because the word I don't use but the feeling I have is definitely demon. Once again, don't get me wrong, me, I am absolutely straight down the non-religious line, Darwin, Physics and little upright walking evolved chimpanzees who like to think they are more special than they really are is my absolute truth. But with this I have a deep gut feeling that somewhere out there is something real nasty that gets a real kick out of causing me as much pain as possible. Now on your war approach, it's not my way. What I believe, and each to their path here with respect to each others individuality, what I believe is that if I go aggressive against this it absolutely loves it. That doesn't mean lying down and that doesn't mean no combat, it just means that I have to prove, attack by attack, that I am stronger, better and harder than it can ever be. I work not to give it so much as teaspoon of anger because i think it eats that for breakfast and demands more. I starve the f...er. It's difficult and I don't win every engagement but over 34 years it aint won no superbowls against me.
Just wanted to say this to you and thanks for your words. I cannot believe that anyone would laugh at what you say, if they do it says something about them absolutely nothing about you as a person. Breath easy, Regards, Jack Adams, London.

Title: Re: Does it have a life of its own
Post by Mac_Muz on Nov 17th, 2004, 10:16am
lawyer huh? "Jack Adams & London" Me too "McKay Concord & Johnson"

Just a wee joke Sir... You have over here in New England or Yankeeland William McKay Cleveland aka Mac

Damned if that pond ain't salty..

You think about right as I see it. I said I don't smash stuff.. I lurk seeking that demon and wait, just like it waits. The anger smolders with in like a fire waiting. It waits for me and i wait for it. You're correct Sir, it feeds off me and then I feed of it.

I won't say I like this type of pain, but it sure does build character. I can face it, but don't always have that strength. I try real hard however.

Being in the Uk you should know the term sniper by heart... This demon is a sniper to me... I see the sniper taking aim at my head even.. I can close my eyes and there it is almost hidden, but not quite. On occasion I like to see it miss that shot, and it does...

It is a single demon we each have and thankfully not a army of demons... When it is 0ne on 0ne I do rather well.. Of course then, they say I am wacked...

This demon is not all far from it, that makes me what I am. I have no intent to allow it any more that it can take, and take it does. I well understand what it wants and it wants my life, but not my soul. It wants controll, and while I do admitt loosing battles I will not surrender and loose that war..

Most folks laugh at my attitude as some form of saying I can not controll, and so therfore must suffer along and play that game. I refuse to play the game the way this demon wants me to, so let it feed, as i take that right back and that pain causes me to grow, and to know myself better and better each day.

I do what ever I need to do, and that can begin with woodland skills and move up into modern times.

I make stone age weapons, and I deal in stone age medicines, but also I am a modern man, with history and experimental tech to seek and find the old ways..

That's appears at first glance to be nuts... But then look at what modern doctors are trying these days with ages old shrooms, which I do not do..... yet..

Can man think to controll what goes on in his/her mind; thereby controll chemical release on demand, or are we helpless to the whim of so-called modern science?

Yeah ... I am way out there make no doubt....  Mac

Title: Re: Does it have a life of its own
Post by sandie99 on Nov 17th, 2004, 11:40am
Well, my CH has life of its own, absolutely. I'm just concerned that it's having much more fun that I am...


Wishing PFdays,
sandie



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