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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> I'd just love to be episodic
        
(Message started by: notseinfeld on Oct 10^th, 2004, 12:19pm)

Title: I'd just love to be episodic
Post by notseinfeld on Oct 10^th, 2004, 12:19pm

At least then there'd be some comfort in knowing that there are other people that have it worse. As a bottom-of-the-barrel chronic there really doesn't seem to be anybody to pity.

Been running 12 straight days of 3 hour morning smackers from K2-K5. Gotta suck on the friggin 02 the second a photon hits my eyes when I open them long enough to summon the strength to get downstairs to make coffee. Once that's brewing, it's back upstairs in attempts to ameliorate the intensity of pain that grew in the coffee-making trip. I can hear that little guy at the end of its percolating performance and after finding the biggest mug possible (to avoid yet other 'uncovered' trips) I fill 'er up and play 'she loves me, she loves me not' with alternating sipping and sucking.

If the past is prologue I've got another 6 weeks of this continued hell before I return to the wonderful once every other day routine with lots of shadows in between. ( a rhyme!) So it seems that being chronic is like never leaving the woods; only vascillating between the dense and sparse tree lines. How the fuck do I get to the valley?

Lots of things I wouldn't like to come back as in this world should reincarnation be true: My galpal X's liver; a pair of Rosie O'Donnell's jeans; the mirror in Paula Jone's house; and anyone unfortunate enough to be on this particular website in viewing distance of my rants.

Thanks gang.

nots

Title: Re: I'd just love to be episodic
Post by nani on Oct 10^th, 2004, 1:30pm

Quote:

a pair of Rosie O'Donnell's jeans

WTF! Someday you may want to tell us what THAT'S about... I'm a chronic, too. I know what you're saying dude...but from what I see on this board, episodics may suffer from less overall HA hours but they seem to get higher kips. :-/I can count (on my two hands) the number of 7 and above in the four years of being chronic. (I can also count on my two hands the number of PF days in the last two years... :( ) I find Neurontin helpful in keeping my pain on the back burner while I go on livin my life.

Oh wait ... I thought it said you WOULD want to come back as...oops ::)

Title: Re: I'd just love to be episodic
Post by kimh on Oct 10^th, 2004, 2:46pm

Never say never and don't ever ASSUME ::)

I know of many chronic ch sufferers who have found a successful management program that has kept them pain free for longer that a lot of "episodics".... PLUS, chronic sufferers I've talked to do not get the "wave-like" symptoms associated with "episodics". This translates to less hits at lower kips over a longer period of time. I would never even attempt to weigh one against the other. Grass is always greener....till ya git there. :P

Title: Re: I'd just love to be episodic
Post by Jonny on Oct 10^th, 2004, 2:54pm

on 10/10/04 at 12:19:32, notseinfeld wrote:

At least then there'd be some comfort in knowing that there are other people that have it worse.

You would find comfort knowing others are in pain?

Thats fucking sad!!....really fucking sad.

Title: Re: I'd just love to be episodic
Post by nani on Oct 10^th, 2004, 4:00pm

Quote:

Thats fucking sad!!....really fucking sad.

Not as sad as if he had wanted to come back as Rosie O'Donnel's jeans... ;;D

Title: Re: I'd just love to be episodic
Post by E-Double on Oct 10^th, 2004, 4:07pm

I think it sucks period!! Episodic or Chronic just plain bites.

It is what it is!

Hope we all catch a break!

Eric

Title: Re: I'd just love to be episodic
Post by notseinfeld on Oct 10^th, 2004, 4:09pm

Eeek, guess that didn't come out right John. What I was driving at was kinda like self-dialogue wherin other folks have greater mountains to climb they need support, not whining. Was just having a mini-pity party feeling as if there was no one in the world who suffers worse and longer than me as I was taking short breaths between sentences. If you've read any of my other posts I hope it would be clear that I have all the empathy in the world for the people here and everywhere that suffer needlessly.

Nana, Kim---right on both counts. It is rare that I get a >5 Kip and frankly don't even know what the waves are. Like you're pointing out, indeed it could always be worse---sometime it just doesn't *feel* that way.

Title: Re: I'd just love to be episodic
Post by nani on Oct 10^th, 2004, 4:35pm

Nots - thanks for not addressing my little faux pas about whose ass you wanted to come back attached to... ::) Know what you're feeling... [smiley=hug.gif]

Title: Re: I'd just love to be episodic
Post by Kevin_M on Oct 10^th, 2004, 10:10pm

on 10/10/04 at 14:46:03, kimh wrote:

I would never even attempt to weigh one against the other. Grass is always greener....till ya git there. :P

;)

wiser words

Kevin M

Title: Re: I'd just love to be episodic
Post by alleyoop on Oct 10^th, 2004, 10:25pm

Hey nots,

How'd the date go? Manage to get through it without getting hit? What'd she say about the CH lit?

Sorry to hear you're getting hit so hard! If it helps(and I know it doesn't), so am I. Anywhere from 3-7 times a day. Maybe toward the holidays we'll both calm down a little. I'd still like to do coffee or (God forbid) drinks with you if we can work it out. Stay in touch.

Hope things turn around for you soon,

.................alley 8)

Title: Re: I'd just love to be episodic
Post by Jonny on Oct 10^th, 2004, 10:30pm

I hear ya, Nots dude

It all sucks!

................................jonny

Title: Re: I'd just love to be episodic
Post by thomas on Oct 11^th, 2004, 2:27pm

I'd love to just not get hit at all, myself.

Title: Re: I'd just love to be episodic
Post by Grandma_Sweet_Boy on Oct 11^th, 2004, 3:00pm

From your mouth to God's ear, Thomas - I expect we all feel like that! Well put.

Title: Re: I'd just love to be episodic
Post by K-9 on Oct 12^th, 2004, 3:06am

Hey nots, I'm chronic and I can relate, it seems like it would be better to find that valley.......but, I've been thinking about that lately and I've decided. I'm used to what I've got, and I don't want to suffer the anxiety of sitting around, watching the summer come to a close, having not been hit in months, almost forgetting what it feels like, then.........wham!!! The episodics wouldn't want to be us either. Jonny said it, "it all sucks." I totally understand especially when us chronics are going through a particularly dense cycle within a constant cycle, our relief isn't no pain, just less.

To quote Deepak Chopra, "Everything is as it should be."
I hope he's right!!! Hang in there!!!

Title: Re: I'd just love to be episodic
Post by sandie99 on Oct 12^th, 2004, 7:56am

You think it's fun being episodic? Well, I hope you'll never have to know what it's like to a episodic-turned chronic... :(

sandie99

Title: Re: I'd just love to be episodic
Post by ZAIRA on Oct 12^th, 2004, 3:13pm

And I'd just love to have a magic wand.
A fucking CCH sufferer from far away. ;;D

Be strong, Zaira

Title: Re: I'd just love to be episodic
Post by Guido on Oct 12^th, 2004, 6:26pm

All this time I thought the chronics had it worse (knowing that chronic or episodic have it bad) but to think the chronics don't have the fun of a kip8 - 10....I say that tongue in cheek. Like has been said, we, all of us share a debilitating syndrome. Glad and sad you all are here.
Guido

Title: Re: I'd just love to be episodic
Post by hotprestwich on Oct 12^th, 2004, 9:07pm

i had no idea chronics get hit by such a low kip is this true? all of mine are usually a kip 7-8

Title: Re: I'd just love to be episodic
Post by bobbio56 on Oct 12^th, 2004, 11:11pm

I am chronic with kip 7-8, as many as 6 per day. Currently ending a pred stretch. Working in Verap with lithium. Never had much success in the past, but need to try something. 120 mg Verap, seems a little low? O2, and lots of other therapies don't seem to work all that well. Have to pace Imitrex inject., like all of us.

To answer the original post, I just take 1 day at a time, and am VERY thankful for a supportive partner, and family. Not always supportive employers though. 8 years of this crap, chronic for last 3. I'm all ears, any suggestions I haven't thought of?

Many heartfelt thanks, Many PF days for y'all. Bobbio.

Title: Re: I'd just love to be episodic
Post by nani on Oct 13^th, 2004, 12:21am

I get hit daily with Dozens of k3-6 HAs. I don't get the nighttime HAs very often. I'm just coming off a six week period of k 6-9s.(get times like that once or twice a year) There are some days when I think I would trade for just an episode of 9's and months of PF time. Except those k9 days, then I'm glad I'm chronic :-/

Title: Re: I'd just love to be episodic
Post by taraann on Oct 13^th, 2004, 1:23am

Quote:

So it seems that being chronic is like never leaving the woods; only vascillating between the dense and sparse tree lines. How the fuck do I get to the valley?

Great analogy. Hang in there. Don't call it a pity party....call it venting. I think its healthy to do sometimes and NOTHING wrong with it.