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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> When are we Chronic?
        
(Message started by: Jasmyn on Nov 27^th, 2005, 1:18pm)

Title: When are we Chronic?
Post by Jasmyn on Nov 27^th, 2005, 1:18pm

Quote:

For chronic sufferers, however, the cyclical pattern is absent and the attacks persist throughout the year. The intensity of each attack varies randomly. Remission for chronic sufferers for longer than a 14 day period is very rare, more usually, only a few days at a time.

Shiver me timbers and raise me as a flag but answer me this: “When do you know you’re chronic?" [smiley=huh.gif]

I’m episodic, been so for the last 14 years, now in my 15th year some things besides my body are changing. ::) Since Aug 2004 I’m somehow in a period, on and off.
Started with the normal cycle that seems to get longer after each passing year, then when I started tapering my meds after the cycle, the shadows and hits were back but not as frequent or severe as in cycle.

So not off meds, get another cycle, taper but get shadows and hits. Went one whole week without a shadow or a hit… BANG he’s back! You’ll remember the last cycle I sat awhile without meds and nearly fell further off my rocker. ;) Went to hospital had all the bloody tests done again, got higher dose of Verap and some Pred, thought I went out of cycle.

Started tapering again with same results. One glass of wine, Oooo! and I believe in my glass of red wine before bed time, can’t be consumed during cycle but the other day as I thought I’m out of cycle (a whole week again without shad/hits) I drank the whole bottle… ;;D no hit but a great hangover the next morning. Now I’m back to shadowing and have to up my meds again.

??????

Episodic dream of chronic denial

Title: Re: When are we Chronic?
Post by MJ on Nov 27^th, 2005, 2:03pm

Jasmyn.

Denial is what I do everytime the cycle ends.

The cycles for me have entered the chronic stage with zero days off but only for a few years. Even if you only can get 10 days off at a time, Just deny it. Thats why the doc and I termed the phrase "Variable episodic".

Maybe switch your red wine to something else, who knows.

Your qoute above holds true but you see it leaves a little wiggle room.
Someone here once said they dont believe in a distinction between the two.

Sharing your dream of chronic denial.

MJ

Title: Re: When are we Chronic?
Post by BobG on Nov 27^th, 2005, 2:16pm

Chronic is the time period of one year without a 14 30 day pain free break, with or without meds.

If you go 11 months of (almost) daily attacks and then get ~~2 weeks~~ 30 days pain free and then the attacks come back you have to start counting again. Sucks, huh?

Title: Re: When are we Chronic?
Post by Jasmyn on Nov 27^th, 2005, 2:38pm

CH to me is very confusing.

What works now may not work anymore the next time around and then again in a few years time.

Cycles are sometimes linked to season and sometimes not, some to altitude or atmospheric pressure. Cycles are changing the older you get, one way or the other.

More and more people get combination HA's and variations on CH.

Now I just wonder who sets this rule that you're chronic after exactly 1 year? Is this set in stone and proven or just a guideline?

Bob it seems silly to believe that in exactly 1 year you count yourself chronic and then when you have a break of 2 weeks exactly (not 13 days, not even 12) you start all over being episodic untill the next 1 year.

[smiley=huh.gif]

Title: Re: When are we Chronic?
Post by BobG on Nov 27^th, 2005, 3:09pm

on 11/27/05 at 14:38:53, Jasmyn wrote:

Bob it seems silly to believe that in exactly 1 year you count yourself chronic

I don't know who or why that rule was made.
I think you're right, it is silly. With fatigue syndrome it is 6 months to be chronic but with pain syndrome (not CH pain) it is 3 months to chronic.

Title: Re: When are we Chronic?
Post by chewy on Nov 27^th, 2005, 3:43pm

Quote:

Chronic is the time period of one year without a 14 day pain free break,

Thats been changed to 30 days.

Quote:

Now I just wonder who sets this rule that you're chronic after exactly 1 year? Is this set in stone and proven or just a guideline?

The IHS. Doctors need some sort of baseline/guideline to treat a patient appropriately. What is appropriate treatment for an episodic will not neccesarily be appropriate for a chronic.

Title: Re: When are we Chronic?
Post by BarbaraD on Nov 27^th, 2005, 3:57pm

And then there's the cycles within cycles. Or high cycle/low cycle - no wonder we're confused. To me only having a 3-4 is a pain free day, but I've been chronic since 97 and don't remember what "out of cycle" was like.

I quit worrying about it years ago and just take things one day at a time and try to be as "normal" as the old head allows me to be.

Hugs BD

Title: Re: When are we Chronic?
Post by Dave_Emond on Nov 28^th, 2005, 1:29am

on 11/27/05 at 15:57:53, BarbaraD wrote:

Exactly Barb! For me it's been since 2000, and yes ...
3-4 attacks per day/night is a blessing. Cycles within cycles are very regular as well. Mid-January through Mid-April and the month of September I go up to a minimum of 8 attacks to 10 per day/night (at which time day and night have lost any meaning.)
Do you get "breaks from shadows"? Shadows never end for me, there are lower and higher levels of the shadows ... but never completely gone.

Jasymn;
Stay in denial! When I felt myself going from episodic to chronic, I sure wasted a lot of time consumed in worry when if I look back, I should have cherished every pain free day and enjoyed them. I have no memory of what a pain free day would even feel like anymore. Just in case ... don't ever waste a PF day!
Hoping for the best for ya,
Dave

Title: Re: When are we Chronic?
Post by Jasmyn on Nov 28^th, 2005, 2:15am

on 11/27/05 at 15:57:53, BarbaraD wrote:

And then there's the cycles within cycles. Or high cycle/low cycle - no wonder we're confused.
Hugs BD

and Dave wrote:

Quote:

Cycles within cycles are very regular as well.

then shouldn't this be revised in the "cluster traits" section?

Quote:

For chronic sufferers, however, the cyclical pattern is absent and the attacks persist throughout the year. The intensity of each attack varies randomly.

Dave you are right on with this one:

Quote:

Stay in denial!

I'm going to do like MJ and like you said, stay in denial. :) I think it is my right as CH sometimes don't give us many choices. Well, I'm taking my right to choose and bugger the beast!

MJ you and your doc have just created the best phrase, that should be added here, for those who choose to walk away from the word "Chronic" or does not fall into either of the categories and are confused, concussed and hopeful.

Update should read:
3 categories of CH exist -

Episodic
Variable Episodic (where the year and 14 day rule is not accepted or applied)
and Chronic (where cycles happen within cycles)

;;D

Title: Re: When are we Chronic?
Post by Dave_Emond on Nov 28^th, 2005, 6:36am

Dave wrote Quote:
Quote:

Cycles within cycles are very regular as well.

Jas Quote:

Quote:

then shouldn't this be revised in the "cluster traits" section?

And:

Quote:

Quote:For chronic sufferers, however, the cyclical pattern is absent and the attacks persist throughout the year. The intensity of each attack varies randomly.

Possibly Jas, but I think we're still learning on this area. The whole disscussion about Chronics with "cycles within cycles" is something we've only been noticing and recognizing pretty much over the last couple years.
I can say this though and doubt (?) that anyone would disagree ... when you're Chronic ... you KNOW you are Chronic. The tough part is trying to answer someone who asks, "Am I going Chronic?" I can't say I've ever heard a definitive answer that could say, "Yes" or "No" to that specific of a question. Sorry to say and as weak as it is, I could only say ... "time will tell." (Hate that answer!)
I don't know that I can buy into any of the medical fields catorgizing days of PF time to determine who is Chronic and who is not. Crap ... they still call Clusters ... "headaches!" What the #$%@! do they know?
Some Chronics have reported PF periods, Barb or I obviously don't experience this. But, then again, some are helped with meds or alternatives where some of us are not.
Makes me want to almost ask a "poll" type question to Chronics: Do ALL Chronics have these "cycles" within being Chronic where the levels of pain and attacks rise at certain time periods throughout the year?
Of course my answer is "Yes."
Then ... I almost have to wonder about Chronics who may get maybe up to 14 days or so if it isn't pure torture to head right back into the everyday attacks and pain?
Some might remember LCBob ... I was Episodic when I first met him in Las Vegas. He said he preferred being Chronic to Episodic ... I about fell out of my chair (and actually leaned over and told him I thought he was out of his mind). Ya know ... I still do ;)
His reasoning was it excluded all the worry and stress waiting for that next cycle. Give me a choice and I'll glady go back to Episodic ... no hesitation there!
Sorry Jas ... I shouldn't even be up right now, but there will be no sleep tonight. So, I may have rambled on and even made things more confusing, I hope not.
I think we just still have so much to learn, and it's going to come from US ... not the doctors "codes" if you know what I'm trying to get across?
Still stay in that denial that you'll ever be Chronic, take every PF day as a blessing and as hard as it is to do over saying ... try not to stress about it.
About all I can offer at this point,
May you have MANY, MANY PF days/nights ahead!
Take care,
Dave

Title: Re: When are we Chronic?
Post by Jasmyn on Nov 28^th, 2005, 9:05am

on 11/28/05 at 06:36:41, Dave_Emond wrote:

Dave wrote Quote:

I don't know that I can buy into any of the medical fields catorgizing days of PF time to determine who is Chronic and who is not. Crap ... they still call Clusters ... "headaches!" What the #$%@! do they know? (Right with you on this one, I'll stick with Cluster Condition CC)

Some Chronics have reported PF periods, Barb or I obviously don't experience this. But, then again, some are helped with meds or alternatives where some of us are not. (That is what makes me wonder because as soon as I get off the meds I'm in cylce? Are you then Chronic when you can't go without your meds? - no I'm not addicted to mine ;;D)

Makes me want to almost ask a "poll" type question to Chronics: Do ALL Chronics have these "cycles" within being Chronic where the levels of pain and attacks rise at certain time periods throughout the year?
Of course my answer is "Yes." (Isn't it time it becomes a poll question under the "cluster quiz"?)

I think we just still have so much to learn, and it's going to come from US ... not the doctors "codes" if you know what I'm trying to get across? (Precisely why I ask these questions to people with the experience)

Still stay in that denial that you'll ever be Chronic, take every PF day as a blessing and as hard as it is to do over saying ... try not to stress about it. (I'm gonna hang on to this "denial" until someone comes up with a cure ;))
About all I can offer at this point, (Thanks Dave that even through your battles you find the time to advise)
May you have MANY, MANY PF days/nights ahead!
Take care,
Dave

Dave there is nothing more in this world, not even world peace, that I wish more for, that pain did not exist - I think that in itself will solve the world peace problem :)

Wishing you and Annette much better days and indefinite pain free times.

Hugs Jas

Title: Re: When are we Chronic?
Post by MJ on Nov 28^th, 2005, 11:45am

Jasmyn I,m glad you started this thread.

So little information really exists on the variations in Cluster headache, how one is affected versus another.

It seems that most if not all info is allways grouped into a one size fits all situation.
As I have read through these pages I find that to be so untrue. I understand the need for the medical community to have a basis to work from, but if you see the multiple medications alone that do and do not work for a diverse group like us. You begin to understand just how much is speculation.
The chronic statement is outdated as we see from just Barb and Dave as each of them have variations from the statement.

Though the similarities of CH are astounding, the variations are even more so.

This disease is very definately a customer driven affliction as far as knowledge is concerned. Research can really only be done by and for the customer (sufferer). The info like you opened up to question will be recognized at some point I hope in the scientific community.
As I have searched through the net on CH allways the generalized info seems to come from sites like this. It is people like Floridian, Pinkfloyd et.al. who publish and help to get this out. This site has become a reference of choice for many researchers and medical personell.

Each and every question regarding CH and the responses no matter how trivial some may seem at times are what is important to our affliction.

I found that a lot of quality questions and answers have been brought up in the past pages, but those questioners have moved on in their possible denial like me, of CH. Denial is how I deal and I wonder if the old statement of clusters going away with age isnt more due to this than anything else.
However when you are chronic denial is an impossibility.

Dave I can certainly relate to your statement
"at wich time day and night have lost any meaning"

Oooops I rambled again, and of course it has nothing to do with the question you asked. Just the way it ended up. All I really started out to say was that last statement.

Title: Re: When are we Chronic?
Post by Jonny on Nov 28^th, 2005, 5:37pm

on 11/27/05 at 15:43:31, chewy wrote:

Thats been changed to 30 days.

You forgot to mention that they changed the meds thing, now, it dont matter if your on meds or not.

Title: Re: When are we Chronic?
Post by mynm156 on Nov 28^th, 2005, 5:41pm

I Knew that something was different when I went Chronic. it wasnt the same. Yes I waited my year and that was now almost two years ago.

Title: Re: When are we Chronic?
Post by Jasmyn on Nov 29^th, 2005, 12:33pm

I'm NOT doing this Chronic thing!

I REFUSE!

I still need to have some say concerning this CH condition.

I HATE YOU BEAST!

Title: Re: When are we Chronic?
Post by E-Double on Nov 29^th, 2005, 12:47pm

You are considered chronic if your cycle extends longer than 1 yr, with or without medication and do not have a break that lasts 30days consecutively.

I honestly agree with the statement above.......

It's easier not dealing with the dread of will it come back or questioning when it will end.

I sure as hell would like it to end but my anxiety level has dropped significantly.
I definitely deal with bouts where I feel incompasitated yet they are far less than when I wished for an ending cycle ALL THE TIME.

Life's good!!
Exhausting but good!

:-*

Title: Re: When are we Chronic?
Post by chewy on Nov 30^th, 2005, 4:51am

Is it 30 days consecutive or 30 days collectively?

Title: Re: When are we Chronic?
Post by E-Double on Nov 30^th, 2005, 7:04am

on 11/30/05 at 04:51:21, chewy wrote:

Is it 30 days consecutive or 30 days collectively?

consecutive

Title: Re: When are we Chronic?
Post by Melissa on Nov 30^th, 2005, 7:35am

Jas, I'm not chronic, but just wanted to say, wouldn't it be better not to label it, but just deal with living with it? For a lot of episodics (I've been guilty in the past), they become very frightened of becoming chronic, but the very label of "chronic" can send one off just as much as the horrid anticipation of getting an attack. :-/

For everyone else, an honest question here, is the treatment really all that different between an episodic and a chronic?

mel

Title: Re: When are we Chronic?
Post by BarbaraD on Nov 30^th, 2005, 11:12am

on 11/30/05 at 07:35:54, Melissa wrote:

Thank you Mel. That's what I was trying to get across. Quit worrying about it and just deal with it. I know I know -- we tend to worry about the unknown, but we (right now) can't do a damned thing about whether we're chronic or episodic so why spend useless hours worrying about whether we're going chronic.? If it happens - it happens and then you deal with it.

NO, if I had my druthers, I'd go back to being episodic, but I can't, so I deal with the lemons I have now. As I said before, a day with only a 3-4 Kip is PF to me and I can go on about my normal business. When I get hit with anything higher than that, I take meds and deal with it. I'll be damned if they're going to ruin my life!

If anything, get your attitude in gear and decide that these things are NOT going to ruin your life. Yes, they hurt, YES, they make you want to run away and hide (if you let them), and YES, we'd all be better off if we didn't have them, BUT WE DO! There are going to be times we can't do what we'd like to do, but that's just the way it is.

End of rant.... Sorry folks, but we should just be thankful for the PF times that we do have. It's taken years for me to get that thru my thick head. Most of you guys are a lot younger than me -- hopefully it won't take you as long as it has me.

Hugs BD

Title: Re: When are we Chronic?
Post by Bob P on Nov 30^th, 2005, 1:22pm

Here's our classification:

http://www.pahlow.net/temp/diagnosis.doc

Title: Re: When are we Chronic?
Post by Jasmyn on Dec 1^st, 2005, 2:23am

Thanks Mel and Barb for the perspective and Bob for the info.