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Cluster Headache Help and Support >> Cluster Headache Specific >> epichronic
(Message started by: chopmyheadoff on Oct 18th, 2006, 4:57am)

Title: epichronic
Post by chopmyheadoff on Oct 18th, 2006, 4:57am
Some of you lads and lasses dont half get battered.
iv just been reading a few comments from different posts from people who get hit every 2 hours, 10 a day etc etc etc.

Jesus - this must be real hell.

Im chronic , iv been virtually pain free for 3 months now thanks to a top neuro, verapamil and the odd shot of imigran.

But for the 7 years when i was undiagnosed i very rarely had more than one a day.

i was kind of epichronic !!! - i would get episodes but with only a week or so break inbetween them.

how you cope with that many hits a day is beyond me - just thought id pass on my respect , my empathy and my pain free wishes !

Title: Re: epichronic
Post by bothofus on Oct 18th, 2006, 5:01am
Hey chop, was wondering where ya been.  Hadn't seen ya on the boards for a few days.

I agree with ya about the many people getting numerous hits.  My heart goes out to 'em.

For now it's just me and my shadows.

Carl

Title: Re: epichronic
Post by JeffB on Oct 18th, 2006, 6:09pm
Nice post Chop.

Title: Re: epichronic
Post by georgej on Oct 18th, 2006, 6:27pm
I'm one of the lucky ones, and I know it.

Nice post, chop.

PF wishes to you,

George

Title: Re: epichronic
Post by alchemy on Oct 18th, 2006, 6:31pm
Thanks for the post Chop, it comes at a good time

Title: Re: epichronic
Post by HeadhurtinMama on Oct 18th, 2006, 8:29pm
[smiley=hug.gif]  Chop, this post was just what I needed this week.

Bridget

Title: Re: epichronic
Post by winshots on Oct 20th, 2006, 11:03am
You are sooooo right Chop...

My CH is episodic, and sometimes it skips a season.
I must be the lucky one here.
I sure as hell know how it feels, but to have to live with this Every Single Day... I cannot imagine.

Makes me cry, makes me pray, makes me want to scream, but that doesn't help.
Maybe my good vibes to you can.

Love ya...

Title: Re: epichronic
Post by sailpappy on Oct 21st, 2006, 3:50am
;;D Thanks Chop,
       As I sit here after my final attempt at sleep and having had my 4th hit since midnight, well your post is a nice change on the board!
       I think the only redeeming quality having severe chronic attacks is no down time to become complacent. it just keeps going so its just part of life.
       If I had to face a new episode each year I think it might make me more insane than being chronic does!
                                                            Pappy

Title: Re: epichronic
Post by Barry_T_Coles on Oct 21st, 2006, 9:11pm
Thanks Chop

I’ve got to agree with Pappy.

on 10/21/06 at 03:50:50, sailpappy wrote:
;;D Thanks Chop,
       As I sit here after my final attempt at sleep and having had my 4th hit since midnight, well your post is a nice change on the board!
       I think the only redeeming quality having severe chronic attacks is no down time to become complacent. it just keeps going so its just part of life.
       If I had to face a new episode each year I think it might make me more insane than being chronic does!
                                                            Pappy

When I went chronic after a heavy cycle in 2004 I initially thought a death sentence would have been better; but you soon come to terms with it and accept it as part of your life, its there so deal with it.
I’ve been trialing Taurine for the last 6 months and getting some reasonable breaks but i am always aware that at any time it’s going to hit me regardless.
It’s better to have 95% of a life than none; and there are too many good people around us to give up.

Kind Regards
Barry

Title: Re: epichronic
Post by chopmyheadoff on Oct 23rd, 2006, 2:41am

on 10/21/06 at 03:50:50, sailpappy wrote:

       If I had to face a new episode each year I think it might make me more insane than being chronic does!
                                                            Pappy


I agree with you there bro - the suspense would be horrible !!  :(

Title: Re: epichronic
Post by LeLimey on Oct 23rd, 2006, 3:57am
I think most of us who are chronic fear being episodic more purely because of that dread of when it will come back. We have talked of this before here and the verdict always remains the same. Both types of sufferers can't imagine how the other group cope!

Title: Re: epichronic
Post by SophiaK on Oct 23rd, 2006, 11:41am
I am in the 10th month of every 2 to 3 hours having a hit. I'm in one as I speak. It hurts like hell, this one started as a  severe sweat then boom!  I'm not happy and sometimes it's so damn difficult to try and be optimistic.  I would like to start something without having to stop and get the ice pack or heating pad. Got stop now.

Title: Re: epichronic
Post by paul2006 on Oct 23rd, 2006, 2:20pm
Thanks Mr Chop  8)

Gotta agree with Pappy too...

It's the extra 4 hits in a leap year that P me off  ;;D ;;D ;;D ;;D ;;D

Title: Re: epichronic
Post by Charlotte on Oct 23rd, 2006, 3:24pm
I, too, am in one as we speak, but the meds have made it bearable.  Still get the peripheral stuff, sweating, hot, frenetic activity,getting pounded, but lighter pain.  Doesn't hurt like hell, only hurts like shit shit shit.

Like Barry said, you adjust.  

Charlotte


Title: Re: epichronic
Post by BarbaraD on Oct 23rd, 2006, 4:41pm
Right now I'm in my "epichronic" high cycle. Getting hit more than normal and not enjoying it at all. I'm about ready for the weather to change and STAY cold.

I think (as others have said) we just get used to being chronic and learn to accept it as a way of life.

The other night my son came over and I was just getting over a hit and not in a great frame of mind. I told him I was hurting like hell and getting hit more than I liked. He looked at me and said, "What's for supper?" So I got supper on the table and kept my gripes to myself for the rest of the evening.

Hugs BD

Title: Re: epichronic
Post by Barry_T_Coles on Oct 23rd, 2006, 10:17pm

on 10/23/06 at 16:41:04, BarbaraD wrote:
"What's for supper?" So I got supper on the table and kept my gripes to myself for the rest of the evening.

Hugs BD


[smiley=hug.gif]

Title: Re: epichronic
Post by Charlotte on Oct 23rd, 2006, 10:36pm
"What's for supper" - my husband now cooks dinner more often than I do, and my 17 year old takes a couple of turns during the week.  

About 11 years ago, I was worse off than I am now and I wanted to kill everyone who asked me what's for dinner.  I believe I said something like, "There's enough food in this house that no one has an excuse to be hungry."   And they all adjusted.

So many ways this keeps us from being there.

Charlotte

Title: Re: epichronic
Post by chopmyheadoff on Oct 24th, 2006, 3:12am
Sophiak and Charlotte - hope you got over your hits ok girls x x x

@Paul 2006 - PMSL  ;;D

Title: Re: epichronic
Post by SophiaK on Oct 24th, 2006, 10:48am
Thank you Chop.
I sometimes wonder if the anger isn't really being let down  by myself.
I want to accomplish a number of things that I enjoy and get sidelined by my head pain. The days go by so fast I sometimes feel like I'm treading water.
Then there's the 'feeling sorry for me' I'm not one to admit to that and realizing I maybe doing it is not a thing I would like about me.
Thanks for listening my friends, I'll get through it, it's just a bad time right now. Over 10 months of daily head pain every 2 to 3 hours, each lasting 25 to 50 minutes doesn't leave much time in between to do allot. Getting a hit in the supermarket is the worst.
I appreciate your support.
SophiaK

Title: Re: epichronic
Post by Charlotte on Oct 24th, 2006, 1:38pm
yes, thanks.  today has been better, milder.  No biggies, so far.

I've been using neurontin differently than recommended - 6 (100 mg) a day spaced to match some of the hits rather than 300 mg 3 times a day.  Right now, I am glad I was using kudzu when I tried both the Indocin and the neurontin because before week 3 on the verapamil escalation, they didn't cut it alone.  It seeems to be a combo thing that works.

c

Title: Re: epichronic
Post by Linda_Howell on Oct 24th, 2006, 2:25pm



Quote:
The other night my son came over and I was just getting over a hit and not in a great frame of mind. I told him I was hurting like hell and getting hit more than I liked. He looked at me and said, "What's for supper?" So I got supper on the table and kept my gripes to myself for the rest of the evening.  


  I'd have made him walk funny.   >:(

Title: Re: epichronic
Post by BarbaraD on Oct 24th, 2006, 5:00pm
The thought crossed my mind Linda ;)

But it just goes to show you -- OTHERS do NOT understand what we go thru... After all, it's just one of Mom's "little" headaches ::)

Hugs BD

Title: Re: epichronic
Post by lskilly on Oct 24th, 2006, 5:31pm
The only way I have ever been is chroic.  10 +years  the first round going on six months this time after an eight year break. I have even learned to control my temper and just grin and say someone said these go away when you turn 70. Only 3 1/2 more years to go.

After typing this over seveal time I think I will just not post anymore when I am in a 10+

Later

Skilly

Title: Re: epichronic
Post by Linda_Howell on Oct 24th, 2006, 7:14pm


  O.K..........I want to meet the person who can type with a Kip 10.   :-X

Title: Re: epichronic
Post by chopmyheadoff on Oct 25th, 2006, 2:42am

on 10/24/06 at 19:14:31, Linda_Howell wrote:
  O.K..........I want to meet the person who can type with a Kip 10.   :-X



[smiley=JAW_DROP.gif]

me too

Title: Re: epichronic
Post by georgej on Oct 25th, 2006, 3:43am

on 10/25/06 at 02:42:46, chopmyheadoff wrote:
[smiley=JAW_DROP.gif]

me too


Or look at a computer screen.  It would make my head explode. :o



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