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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> the definition for Chronic really sucks 
        
(Message started by: floridian on Aug 10^th, 2004, 9:11pm)

Title: the definition for Chronic really sucks
Post by floridian on Aug 10^th, 2004, 9:11pm

Quote:

Chronic is re-defined as "no more than 30 consecutive PF days" in a years time. Used to *be* 14 consecutive days.

That's the official definition - its arbitrary, and a year is too long. Clearly, the people that decided on 30/365 as the cut-off don't have clusters. If someone goes 300 days with a CH everyday, finds 31 days without pain, then starts up again, they sure as hell are not episodic. But the official diagnostic criteria says zero the clock, start over, maybe you can be considered chronic in another year. That's inadequate and inhumane.

Should a person have to wait a year or more before considering lithium or being eligible for disability benefits? A reasonable doc would see a pattern before a year, but lithium is generally reccomended for chronics, not episodics.

Proposal:

There should be atleast 3 classes: episodic, chronic, and indeterminate. If a person has clusters more than 3-4 months, they should be moved from episodic to indeterminate. The one year time period should be shortened.

The terms periodic and aperiodic should be used in the diagnosis. Periodicity could be annual or biannual, strong or weak, or absent.

Title: Re: the definition for Chronic really sucks
Post by E-Double on Aug 10^th, 2004, 9:19pm

Once again Floridian...http://smileys.smileycentral.com/cat/23/23_28_100.gif

It's so true!

Eric

Title: Re: the definition for Chronic really sucks
Post by UN_SOLVED on Aug 10^th, 2004, 9:27pm

on 08/10/04 at 21:11:03, floridian wrote:

That's the official definition - its arbitrary

I agree. By this definition...a person could go 29 days without a headache, then have 1 headache. This could happen every month for a year ... and they would be considered chronic (and only have a total of 12 HA's in a years time).

That's surely not the 'chronic' condition I'm in !!

Unsolved

Title: Re: the definition for Chronic really sucks
Post by Superpain on Aug 10^th, 2004, 9:51pm

I don't know... I kinda like being the chameleon... Being able to say I'm chronic and episodic at the same time. ::)

J/K

I agree. They are not adequate.

I guess I'm chronosodic. :)

Title: Re: the definition for Chronic really sucks
Post by don on Aug 10^th, 2004, 9:54pm

Quote:

indeterminate.

That sure as hell wont get anybody any benefits either.

Any Doctor worth his salt will treat accordingly. The chronic/episodic criteria is set up primarily so that Docs have a baseline for treatment. Gotta draw a line somewhere.

Also any Doc worth his salt will not dismiss someone as being episodic if only 29 days PF time is accomplished in a year.

Title: Re: the definition for Chronic really sucks
Post by alleyoop on Aug 10^th, 2004, 10:07pm

on 08/10/04 at 21:51:04, Superpain wrote:

I guess I'm chronosodic. :)

LMAO!!!

....................................alley [smiley=laugh.gif]

Title: Re: the definition for Chronic really sucks
Post by don on Aug 10^th, 2004, 10:09pm

Quote:

Being able to say I'm chronic and episodic at the same time.

Does that make you Bi ? 8)

Title: Re: the definition for Chronic really sucks
Post by UN_SOLVED on Aug 10^th, 2004, 10:21pm

on 08/10/04 at 21:54:03, don wrote:

Any Doctor worth his salt will treat accordingly.

Also any Doc worth his salt will not dismiss someone as being episodic if only 29 days PF time is accomplished in a year.

I agree.

Unsolved

Title: Re: the definition for Chronic really sucks
Post by Prense on Aug 10^th, 2004, 11:19pm

I meet the old requirement for chronic...

Wouldn't bother me a bit if folks called me episodic.

Lithium didn't do anything for me either. Still no preventative... Now, no insurance (or job, heh). Oh well, at least I was able to stock up on the trex.

Regardless of the label, this shit sucks...

Chris

Title: Re: the definition for Chronic really sucks
Post by manana on Aug 11^th, 2004, 10:51am

OK, I understand the "official" definition regarding the time frame for chronic CH sufferers but, what is the "official" definition regarding the word "headache" or "pain free"? I used to think a person didn't really suffer a cluster "headache" unless it was a full blown KIP 10. I used to think anything less was only the prelude to a "headache". Does anyone know the "official" definition for "headache"? Trust me, I know all the symptoms...but, I'm just curious if there is an "official" definition.

Title: Re: the definition for Chronic really sucks
Post by Prense on Aug 11^th, 2004, 11:09am

Headache, to me is exactly as it sounds...

To make pain level a deciding factor would be futile. Everyone's relation to pain will vary.

Your K-10 may very well be my K-7...then what?

Chris

Title: Re: the definition for Chronic really sucks
Post by E-Double on Aug 11^th, 2004, 11:23am

on 08/11/04 at 10:51:14, manana wrote:

I think I asked a very similar question on another thread...

It comes down to not having anything. Not a twinge, not a shadow, nothing.

The fact is that our definitions of "pain" is so different from that of the common world.

Think about it...
The mildest of shadows, what we call an annoyance might floor anyone who doesn't have CH.

I think if people without Ch would feel a "kip 1-3" they would run for the advil and just want to be left alone while we just feel a "pain in the ass annoyance" but life's pretty good because we're not gettting slammed.

Sucks but those seem to be the facts.
I'm far from Chronic and lucky enough to have only danced a few times the past week after a short 2 week break(very mild. it was nice but a tease) from nearly 2 months of hell, but it's damn uncomfortable.

So to answer your question... I don't know and I hope not to. Sorry guys!

Hang in there!

Eric

Title: Re: the definition for Chronic really sucks
Post by farmboy on Aug 11^th, 2004, 12:15pm

Well i am going to throw in my 2 cents worth.

I would think that if you got more than 1 headache everyday for say 20 days out of the month then get a break for say 3 days or so. then the next month you get 27 days with headaches and only a few days relief and this repeats itself for months on end i would think that would be chronic. if 3/4 of your days in a year are filled with headaches that would really mess up your life and make it hard to do anything.

chronic would in my mind be more than 14 days pain free per year . but some where in the range of say 1/4 of the days in a year with out a headache.

Title: Re: the definition for Chronic really sucks
Post by Superpain on Aug 11^th, 2004, 5:21pm

I say we are all chronic.
Except for Charlie... (hope that lasts)

You may get PF for a while but you've got a better chance of hitting the powerball than never having another cluster again.

chron·ic ( P ) Pronunciation Key (krnk)
adj.
Of long duration; continuing: chronic money problems.
Lasting for a long period of time or marked by frequent recurrence, as certain diseases: chronic colitis.
Subject to a habit or pattern of behavior for a long time: a chronic liar.

Most all of us are going to get hit the rest of our lives wether it be continually or cyclically, by definition we are all chronic. IHS don't mean shit to me....

Title: Re: the definition for Chronic really sucks
Post by BlueMeanie on Aug 11^th, 2004, 5:22pm

I agree Floridian, except Intermediate would have to be longer than 3-4 months as most my cycles are at least 12 weeks. My opinion Intermediate would have to be 6 months or more but doesn't qualify as chronic.

Title: Re: the definition for Chronic really sucks
Post by eddie on Aug 12^th, 2004, 11:21pm

365 days thats what mine has been in 2004
enough is enough no its not the rebound thing
i can go to my doc and get pain meds i choose
not to cause its just not worth it i dont need
a bandaid i have had a little relief with the prednisone
but did not get rid of the beast
i learn alot here so i can find the best thing for me
my heart goes out to all of you
there is some good people here
THANK EDDIE

Title: Re: the definition for Chronic really sucks
Post by BlueMeanie on Aug 13^th, 2004, 12:38am

on 08/12/04 at 23:21:49, eddie wrote:

Eddie,

You mean to say that you do not have any meds and have CH's for 365 days ? Whoa. Have you tried everything but nothing works or what. Sorry to read your post. PF Vibes heading your way.

Title: Re: the definition for Chronic really sucks
Post by Gator on Aug 13^th, 2004, 12:43am

on 08/11/04 at 12:15:53, farmboy wrote:

The 30 days are consecutive. 3 pf days a month is still chronic even though it adds up to more than 30 days in a year.

I haven't suffered as long as any of you, but I agree with Prense, this shit sucks.

I've had 10 months of this crap with no real break to speak of. I too have lost my job. The state employment office says I'm unemployable. Takes 3 - 4 months for a fucking Disability Claim to go through. I have no prevents that work. Only thing I can do is dance or abort. Since we changed to my wife's insurance, the fight to get Zomig NS is on again. At first the clown she talked to told her I could only get 6 per year. After I calmed down and peeled her off the ceiling I checked their website and Zomig NS is not even covered except by pre-certification and then only 6 per month. The neuro talked them into 12, but he is trying to get them to go for 30 per month with a letter of medical necessity. That's still 1/3 of what the neuro told me I could take and only covers 1/5 of the attacks I get. Luckily, not every attack is a K10, but there are a lot of damned 7's & 8's that I'd like to not have to suffer through. God I hate the insurance racket. I'd love to be able to give the people that deny the meds a good 2 - 3 hour K10 with no meds whatsoever. And then give them another K10 and let them abort. I bet there would be more approvals. I'd like to give the same thing to the dill holes that set the drug pricing. Maybe then we could afford the damned drugs the insurance companies deny us.

Sorry about the rant. Bottom line is 10 months of 3 - 5 hits (or more) per day. Unless something breaks soon, I'll fit the old chronic guidelines, too. Old, new, whatever - it all sucks, but at least they are giving more pf days and still can be considered chronic. That should help more people in their disability and assistance claims, I guess.

Gator

Title: Re: the definition for Chronic really sucks
Post by eddie on Aug 13^th, 2004, 1:15am

not everything tryptons dont work for me
but yes 2004 has been a bad yr for me
thats why im looking for all options
some meds i have not tried i do have
a list of different meds im not kidding
i started last yr at this time and they
just dont let up my tremiginal nerve
pulses alot im going back to the doc
tomorrow. i have been married only
2.5 years i waited along time to
find someone who loved me enough
to put up with it but here latley she
sleeps in the spare bedroom. im working
hard to find what works for me. i always
get this crap in the fall and they last till
about may but this yr just cant break the
cycle. fall around the corner when they start
i can take xanax and melintonin still
cant sleep but 2hrs and im back up
mine hit hardest at 2:00pm kip 8or 9
somtimes its a 10 . prednisone works
somtimes but not this yr im working
with my doc to figure out what works
for me. im just trying not to panic
im just reading everything i can but
that works on me after a while
I WILL NOT GIVE IN THANKS EDDIE