Clusterheadaches.com Message Board (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
New Message Board Archives >> 2004 Posts >> Chronic are you?
(Message started by: don on Aug 1st, 2004, 12:16pm)

Title: Chronic are you?
Post by don on Aug 1st, 2004, 12:16pm
The term "chronic" gets thrown around a lot lately.

The new IHS diagnostic guidelines state less than one month of pain free time in one year.

Title: Re: Chronic are you?
Post by ClusterChuck on Aug 1st, 2004, 12:26pm
Hmmm ... Maybe I am not chronic?  In the past six plus years I think I MIGHT be able to put together ALMOST 30 days PF.  

Does that mean I am NOT chronic?  YEEEHAAAWWWW!!!!

Chuck

PS:  Wait a minute, I think it only comes up to 25 days in the past 6+ years, DAMN!

Title: Re: Chronic are you?
Post by kissmyglass on Aug 1st, 2004, 12:38pm
yup, still chronic...really sucks... >:(

Title: Re: Chronic are you?
Post by Becky on Aug 1st, 2004, 12:55pm
Shit 30 days in a year, WTF I don't remember the last day that I have been PF in the last 6+ years.

I am Chronic :'(

Title: Re: Chronic are you?
Post by BarbaraD on Aug 1st, 2004, 12:59pm
Pain FREE????? What's dat?

Geeze, I thought only reaching a 4-5 was PF. Maybe I'm Chronic -- ya think?

Chuck I got about a year on ya ...

Hugs BD

Title: Re: Chronic are you?
Post by fubar on Aug 1st, 2004, 1:56pm
I'm happy to report that NO, I am not chronic anymore.  What a blessing.  Wouldn't wish that hell on anybody.   In addition, I have gained a whole new appreciation for those who contemplate suicide, since before my 3 year chronic episode I thought you had to be insane to consider suicide.  I know better now.  I also know I am unable to commit that final act of selfishness, and for that knowledge I am truly thankful.

-Shawn

Title: Re: Chronic are you?
Post by Karla on Aug 1st, 2004, 2:55pm
After having no breaks for over 6 years and being chronic I can happily say that as of today It has been 5 months since my last ha!  I actually sat outside in the hot sun and enjoyed myself this afternoon.  5 months ago that would have been triggering very intense ch to the point where I would want to go to the er or off myself.  I thank God everyday for this change in routine.

Title: Re: Chronic are you?
Post by OneEyeBlind on Aug 1st, 2004, 3:03pm
Nope, I ain't chronic.  Heck I have only had one ungodly cycle that lasted 4 months.  Hoping that I am on the 99 year plan.  I feel for those that are chronic, headaches (yea, I only call them that cause I haven't had one in almost 1 1/2 years) SUCK.  

Title: Re: Chronic are you?
Post by forgetfulnot on Aug 1st, 2004, 3:03pm

on 08/01/04 at 12:16:43, don wrote:
The term "chronic" gets thrown around a lot lately.

The new IHS diagnostic guidelines state less than one month of pain free time in one year.


Would that be medicated, unmedicated or either one?

Lee

Title: Re: Chronic are you?
Post by judyw on Aug 1st, 2004, 3:10pm
Sadly there does seem to be a lot of chronics here, but what better place for us to be...where else can we come for the understanding and support, but here... ::)It also makes for a solid daily base for the episodics who come and go...We are also supported by the episodics who remain and continue their support to us and others who seem to show up on a too regular basis...Look at the Guestbook for all the postings who also seem to fit the Chronic group?  I for one am very proud of each and everyone of us...facing CH everyday, we continue to face life head on...are we not able to continue to smile and accomplish much in our lives... ;;D 143

Title: Re: Chronic are you?
Post by don on Aug 1st, 2004, 3:27pm
medicated or not. They took the med thing out of the equation.

Title: Re: Chronic are you?
Post by Roxy on Aug 1st, 2004, 5:19pm
awwwww hell, don.  I had 8 days a few months ago.  I thought I was halfway to being episodic.

I still think I'm just an episodic with long ass cycles.   :P


Title: Re: Chronic are you?
Post by Carl_D on Aug 1st, 2004, 6:44pm
Yup  chronicically chronic since 2/98.
A few 12-14 day breaks in 2001.
Went haywire again in 2002.
After many failed attempts, Imitrex finally worked for me upon trying it again August of 2003. Had no abortives until then, just rode th bastards out.
Just enjoyed 3 p/f days. That ended this morning.
ARRRRRRGH!

CD

Title: Re: Chronic are you?
Post by Jeepgun on Aug 1st, 2004, 7:37pm
I don't think I'll ever be chronic, because if that happens, I'll just shoot myself in the face. Fuck it.

Title: Re: Chronic are you?
Post by Carl_D on Aug 1st, 2004, 7:49pm
No you won't Jeep. You know why?
You're fucking stronger than this piece of shit beast in your head.
To end it due to CH is like going to war, being in battle, and saying, "I'll end it now before the enemy takes me over." When you might be at the brink of victory.

Never surrending to the ClusterBeast!!! Fight that fucker to the bitter end!

Besides, you're not fighting the war alone. We are ALL here with you fighting side by side.

War and Peace,
Carl D

Title: Re: Chronic are you?
Post by Jeepgun on Aug 1st, 2004, 8:25pm
*sigh* You're right, Carl. Dammit, though... I hate the fact that there is a such thing as cluster headaches, and hate it even more that there are people who are chronic and never get a break from the beast. That just tears me up... :(

Title: Re: Chronic are you?
Post by Prense on Aug 1st, 2004, 8:41pm
Chronic seems to really only matter for things like disability, treatment options or whatever.  Whether you meet the definition for chronic or not, CH still sucks.  It doesn't matter to me if someone calls themselves chronic or not...my pain's still the same.

Chris

Title: Re: Chronic are you?
Post by don on Aug 1st, 2004, 8:43pm

Quote:
Chronic seems to really only matter for things like disability, treatment options


Those reasons sound good enough for me.

Title: Re: Chronic are you?
Post by alleyoop on Aug 1st, 2004, 10:04pm
I was diagnosed chronic 5 yrs ago. If the beast gave me a two day break, I thought I was in heaven. I soon learned however to almost dread these small breaks because the beast always seemed to make me pay dearly for them. The lithium seemed to take some of the wind out of him, but he was still relentless even if somewhat weaker.

Then I found verapamil. I know it doesn't work for everyone, but for me it's been a God send, especially since I finally seem to have found the right dosage. But if there's one thing I've learned- it's to not get excited. I know it's no "majic bullet!" I had 26 days straight PF, but the beast has showed up the last three weekends hitting me hard 6-8 times a night just to let me know he's still around! At one point a few months ago, I even tried giving up meds altogether just to see what would happen. BIG MISTAKE!!

So, according to the IHS, I would not be classified as chronic anymore. All I know is without any meds, I get hit hard daily. With them and all of their side effects, life is closer to the way I remember it being before all of this started. So I will happily wear the tag "episodic" although it is a lie. But you'd better believe when that "majic bullet" does come along, I'll take it and happily call myself PAIN FREE!!!!

An epicodic in one long episode....................

...............................................................alley

Title: Re: Chronic are you?
Post by Tiannia on Aug 1st, 2004, 10:19pm
Yep - supposed to be chronic now. Started July 13 - got 12 pf days in Oct. Got 2 4 day breaks - one the end of Dec. Stopped on Christams Morning - now that really sucked to ride out a HA while my kids where trying to open presents. The other was end of Feb.  Soiince then so such luck.  But I am starting to get shadows now on the right side where I only had HA EVER on the left side. Not sure if the bastatrd is changing on me or if it is just cause I put in over 60 hours last week and work and it is just stress.

-Tia

Title: Re: Chronic are you?
Post by vig on Aug 1st, 2004, 10:21pm
unfortunately, the 30 days have to be continuous too.
Doh!

Title: Re: Chronic are you?
Post by 9erfan on Aug 1st, 2004, 10:27pm
Yep, chronic.  :-/  My last pain-free day was in February of 2001.  Oh well.

Title: Re: Chronic are you?
Post by UN_SOLVED on Aug 2nd, 2004, 1:12am

on 08/01/04 at 12:16:43, don wrote:
The term "chronic" gets thrown around a lot lately.

The new IHS diagnostic guidelines state less than one month of pain free time in one year.


Where is this new information located at??

Thanks,

Unsolved

NEVERMIND ... FOUND IT HERE http://216.25.100.131/ihscommon/guidelines/pdfs/ihc_II_main_no_print.pdf

Title: Re: Chronic are you?
Post by BobG on Aug 2nd, 2004, 3:21am

on 08/01/04 at 19:37:23, Jeepgun wrote:
I don't think I'll ever be chronic, because if that happens, I'll just shoot myself in the face. Fuck it.


Can I have your Jeep?

Just kidding.  ;) Now, no more talk like that.

Title: Re: Chronic are you?
Post by Cathi04 on Aug 2nd, 2004, 4:55am
FRANK!
That'll be about enough, now, y'hear?
T hink of it this way, what about the jeep? it would be horribly lonely, and who would take it out for exercise.. HMM???
Ya gotta THINK, Man!!
Cathi- who never wants to hear ya talk like that again-hear me?


Title: Re: Chronic are you?
Post by Prense on Aug 2nd, 2004, 8:29am

on 08/01/04 at 20:43:18, don wrote:
Those reasons sound good enough for me.


Sarcasm...


Where's the damn cat Don???

Chris

Title: Re: Chronic are you?
Post by Jeepgun on Aug 2nd, 2004, 8:30am
Sorry... I really wasn't trying to be grim or morbid. The truth of the matter is, I love life enough to hold it lightly, if that makes any sense. When it comes right down to it, I don't think I would kill myself. (already tried and failed at it, a few times.)

When I was waiting to get the results of my CAT scan and MRI, I was certain that they would find an orange-sized tumor in my head, or maybe cancer of the opthalmic nerve. I thought, "Well, if it's time to go, it's time to go." I would be okay with it. I've done everything I've wanted to do, gone everywhere I've wanted to go, said to everyone the things that I feel most deeply in my heart... I'm on good terms with my own mortality. No regrets. When death comes, I don't want to be surprised and frightened. Instead, I want to greet him as one greets an old friend, embrace him, and say, "My bags are packed. What took you so long?"

Anyway... Before this gets entirely too maudlin...

Title: Re: Chronic are you?
Post by thomas on Aug 2nd, 2004, 8:39am
Nope.  Not me.

Title: Re: Chronic are you?
Post by Gator on Aug 2nd, 2004, 9:43am
Nope, not chronic, yet.  It's only been going on 10 months now without a break.  

No preventatives work.  All I can do is abort with O2 and Zomig NS (usually) or ride it out.  

I know I am luckier than some who don't even have that much.

Gator

Title: Re: Chronic are you?
Post by Versilleus on Aug 5th, 2004, 3:18am
Yep, still am chronic. A month of pain-free? shit I only get a week. A month would be too much ! I wouldn't know what to do with myself:) Nothing like having my life destroyed by something I cannot see.

Paul

Title: Re: Chronic are you?
Post by ExPat_jac on Aug 5th, 2004, 3:29am

>>  I don't think I'll ever be chronic, because if that happens, I'll just shoot myself in the face. Fuck it.

Bullshit....

I don't think I'll ever be *normal pain free*, because if that happens, I'll just shoot myself in the face. Fuck it.

;;D

Hey...when you've lived with the beast THIS long...I don't know to tell the truth if I wouldn't feel something a kin to missing him where he to leave.....


NOT.....


Title: Re: Chronic are you?
Post by E-Double on Aug 5th, 2004, 8:02am
I'm a long way off and hopefully never get there so I won't reall worry about it but I gotta question.....


Can one be considered chronic if they don't meet the criteria for remission yet only have what we call mild hits??

Do they have to be full blown or just enough to annoy us? This is one thing I did not read in the (IHS)manual ;)

Just curious

Eric

Title: Re: Chronic are you?
Post by juvy on Aug 5th, 2004, 11:35am

on 08/01/04 at 19:37:23, Jeepgun wrote:
I don't think I'll ever be chronic, because if that happens, I'll just shoot myself in the face. Fuck it.


Don't even think it or I'll shoot your ass and your foot.
And don't think I can't hit you from here either!

*hugs*
Juvy

Title: Re: Chronic are you?
Post by ExPat_jac on Aug 6th, 2004, 2:54am

Juvy....

Just noticed your tag line...and country...

Boy...you *are* misplaced!  A Texan in the Netherlands?

(but than again, having spent time in both Texas and there, I'd take where you are....)

I wouldn't take here threat too much to heart Jeepgun

afterall...she's not in Texas anymore...a bit harder for her to get a riffle now  ;;D

ExPat_Jac

Title: Re: Chronic are you?
Post by Prense on Aug 6th, 2004, 12:46pm

on 08/05/04 at 08:02:59, E-Double wrote:
Can one be considered chronic if they don't meet the criteria for remission yet only have what
we
call mild hits??


PF, not "pain reduced"...

Title: Re: Chronic are you?
Post by synergy2120 on Aug 6th, 2004, 1:17pm
my partners definately chronic then - 4 days pain free in the past 3 years! Those 4 days were 2 weeks ago when marc was smoking really strong cannabis, dont know if it got rid of pain or if it was just coincedence - you never can tell with the beast.
Has anyone else tried cannabis? if so has it worked for you?

Title: Re: Chronic are you?
Post by E-Double on Aug 6th, 2004, 1:25pm

on 08/06/04 at 12:46:40, Prense wrote:
PF, not "pain reduced"...



Not being a wise guy here....

Think about those times that (I hope all have had)
you may just have "twinges"
For most this is just an annoyance and doesn't constitute pain per se'.
What if you just have those. The most mild of shadows you know something is there but it doesn't hurt.

There has to be NOTHING? not a neck twitch, slightest of pressure? slightest of anything?

Just curious b/c I was having a conversation last night with another "head" and was explaining how our definitions of pain differ from everyone else and that although he thought he was out of cycle the slightest twitches could mean that he is still in.

Thanks for the knowledge.

E

Title: Re: Chronic are you?
Post by synergy2120 on Aug 6th, 2004, 2:12pm
:-/ sorry everyone, ive just realised that this site doesnt tolerate drugs like cannabis, i dont like drugs like that either but i just wanted to know if anyone else had tried it - sorry if i have offended anyone. :'(

Title: Re: Chronic are you?
Post by AlienSpaceBabe on Aug 6th, 2004, 2:19pm
Was either chronic or episodic with really really long episodes.....

Seems the fire cured my CH tho   ::)  nothing other than shadows since that morning!

Title: Re: Chronic are you?
Post by Prense on Aug 6th, 2004, 5:01pm

on 08/06/04 at 13:25:17, E-Double wrote:
explaining how our definitions of pain differ from everyone else and that although he thought he was out of cycle the slightest twitches could mean that he is still in.


BINGO!

If you are in cycle or chronic, you will know it.  At least, that's how it is for me...

Chris

Title: Re: Chronic are you?
Post by alleyoop on Aug 6th, 2004, 11:56pm

on 08/06/04 at 17:01:29, Prense wrote:
BINGO!

If you are in cycle or chronic, you will know it.  At least, that's how it is for me...

Chris


Yea, me too Chris. What gets me is the IHS setting these arbitrary amounts of time (2 weeks, 30 days) that you have to go PF (with or without meds) to be considered episodic vs chronic. You can't convince me that someone who has been chronic for years and then because of a new med, goes 31 (or 61) days PF before the med quits doing it's majic, and then goes back to daily hits - isn't chronic! Unless he goes into an episodic pattern after that. I guess only time can tell. This disease is so insideous, it's really just a guessing game for anyone!

What do I know?.......I'just know when my head hurts!......

........................................alley [smiley=huh.gif]

Title: Re: Chronic are you?
Post by don on Aug 7th, 2004, 12:04am

Quote:
What gets me is the IHS setting these arbitrary amounts of time (2 weeks, 30 days) that you have to go PF (with or without meds) to be considered episodic vs chronic.


First off, I believe the IHS only publishes the criteria, it does not determine it.

Secondly,  There is a criteria so that Docs can properly treat. Nothing is carved in stone but the criteria will give a Doc a baseline to work from.

Title: Re: Chronic are you?
Post by Jeepgun on Aug 7th, 2004, 1:55pm

on 08/06/04 at 13:17:27, synergy2120 wrote:
my partners definately chronic then - 4 days pain free in the past 3 years! Those 4 days were 2 weeks ago when marc was smoking really strong cannabis, dont know if it got rid of pain or if it was just coincedence - you never can tell with the beast.
Has anyone else tried cannabis? if so has it worked for you?



I think it may help some people. For me, I've found that it is a "sensory intensifier." If I feel a little queasy, grass will magnify it and I'll be tossing my cookies all over the place. If I'm in physical pain, the pain is intensified. The thing that grass does very nicely for, is mental/emotional pain, but like drinking, it's only a temporary respite.

And I don't think you've offended anyone.

-Frank

Title: Re: Chronic are you?
Post by UN_SOLVED on Aug 7th, 2004, 6:28pm
SO.....

Can 1 go for 29 days PF and then have 1 single attack ... only to start over again .... for a year. Having a TOTAL of 12 HA's in 1 year.

You're still considered "Chronic" by IHS ???  WTF  ??? Does that sound right / logical ??

UNsolved



Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1!
YaBB © 2000-2003. All Rights Reserved.