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        Cluster Headache Help and Support >> Cluster Headache Specific >> Asking for answers to DaCluster's question
        
(Message started by: Dragnlance on Feb 14^th, 2006, 11:00pm)

Title: Asking for answers to DaCluster's question
Post by Dragnlance on Feb 14^th, 2006, 11:00pm

Hey All,
Dacluster hit me with a question, and I am curious as well...
Looking for your feedback.

Quote:

I seem to fall into both catagories, Chronic and Sporatic. Have you ever heard of this before?
D!

Thanks all!!

Dragn

Title: My aRe: Asking for answers to DaCluster's question
Post by BobG on Feb 15^th, 2006, 6:35am

My answer is no. You are either chronic or episodic.

Chronic is a measure of time. One year without a 30 day break with or without meds. Chronics may have some periods during that 365 days when the attacks are worse than others.

Episodic may have clusters for weeks or months each year, or every other year, or every 2 or 3 years. But they don’t have the one year time span.

Title: Re: Asking for answers to DaCluster's question
Post by vig on Feb 15^th, 2006, 6:51am

it's not so black and white.
I started episodic...
four episodes per year....
about 2 months long...
sometimes they blur into each other and sometimes the month or so is clean...

I get both definitions

Title: Re: Asking for answers to DaCluster's question
Post by E-Double on Feb 15^th, 2006, 7:46am

There are chronics who have cycles within cycles......
periods of high and low activity.

We spoke about that @ last years OUCH convention.....

how about Epi-chronic or Chronisodic ;)

Title: Re: Asking for answers to DaCluster's question
Post by Dragnlance on Feb 15^th, 2006, 8:47am

Quote:

how about Epi-chronic or Chronisodic

Chronisodic!!! [smiley=crackup.gif]

I LOVE IT!!

Title: Re: Asking for answers to DaCluster's question
Post by MJ on Feb 15^th, 2006, 10:58am

Not sure what is meant by sporadic.

But you can be both chronic and episodic.

In my case its called variable episodic but you wont find that term in general CH literature.

Cycles for me have last anywhere from 4 months to 3 years.
The cycles can come at any time they choose and go away for varying lengths of time.
Allways having silent CH out of cycle and Bam attacks..

Now closing in on 6 months in cycle. (Controlled now)

First few years were as predictable as an episodic can be with annual cycles. Then they were not.

Title: Re: Asking for answers to DaCluster's question
Post by Lizzie2 on Feb 15^th, 2006, 11:06am

Didn't read the thread, but one other kinda random way of looking at it is that a person could be an episodic - yet be referring to the fact that they suffer from a chronic condition. To an extent, we're all "chronic" based on the fact that CH is a condition that is experienced for years, with no definitive cure. But most people aren't chronic as defined by the IHS criteria - which is what's referred to with the "30 days pain free", etc guidelines.

What I'm saying is probably not what the person meant, but it was just a random thought that hit me when people refer to conditions as chronic.

For me, I'm chronic in that I don't have 30 days off from CH, but I agree with what Eric wrote in that some times of year are worse for me than other times...which seems like almost mini cycles within the chronic-ness.

Heh I'm probably not making much sense....since I've been awake for about 19 straight hours now - most of which was somewhat stressful, I think I'm gonna lie down now! haha

Title: Re: Asking for answers to DaCluster's question
Post by FramCire on Feb 15^th, 2006, 11:09am

My doctor wrote "Chronic Cluster Headaches" as my diagnosis when I was reffered to the headache specialist I see. However, I am not chronic unless the pain from my disk problem count against PF days. I have only had 1 or 2 PF days over the last 18 months, but most of it was the disk problem.

Anyway, I thought it was interesting that my doctor mislabeled me as chronic.

Title: Re: Asking for answers to DaCluster's question
Post by Chonas on Feb 15^th, 2006, 12:38pm

Francire, what is a disk problem?, why does it cause headaches?. Thanks.

Title: Re: Asking for answers to DaCluster's question
Post by Dragnlance on Feb 15^th, 2006, 3:21pm

Quote:

For me, I'm chronic in that I don't have 30 days off from CH, but I agree with what Eric wrote in that some times of year are worse for me than other times...which seems like almost mini cycles within the chronic-ness.

Hey Lizz, I understand perfectly because you and Eric described my condition to a tee. This year is getting off to a good start as I now have had 2 1/2 days pain free. I also am going into one of those mini cycles you describe, where the monster digs deeper into the brain than normal. I suspect I will see a let up in this in late May or early June.
Last year I had 27 full pain free days. Whoo Hoo!, maybe I hit 30 this year!

hope abounds! lol

Dragn

Title: Re: Asking for answers to DaCluster's question
Post by FramCire on Feb 15^th, 2006, 3:26pm

on 02/15/06 at 12:38:36, Chonas wrote:

Francire, what is a disk problem?, why does it cause headaches?. Thanks.

I had 2 disks in my neck that needed to be replaced (w/fusion) and the pain started the day after my cycle ended and my 1st PF day from the neck surgery another cycle started. It is strange to me that the only CH pain free time I had, was when I was in pain from my disks and then surgery.

So technically, I have had 1 PF day in the lact 18 months or so, but most of it was not CH. Sorry if I confused anyone with the way I worded it. I am episodic not chronic.

Title: Re: Asking for answers to DaCluster's question
Post by sandie99 on Feb 16^th, 2006, 4:19pm

I was episodic first, then ch decided to torture me on daily basis and turned chronic. But I do admit that I didn't want to say that out loud myself... I pretended that I was a episodic with one terribly long cycle until my neuro said the word chronic.

Best wishes & PF days to all,
Sanna

Title: Re: Asking for answers to DaCluster's question
Post by BarbaraD on Feb 17^th, 2006, 8:18am

I'm chronic, but have periods of "easy" times then I hit the "high" cycles, so chronics have episodes within the chronic cycles if that makes sense.

to me, the "easy" or PF times are the times I don't go over a 5 for days or weeks at a time. Then I'll have weeks or months that I hit the big ones - just like I was having an episode.

I think after a few years a chronic sufferer just learns to deal with it and doesn't think about it as much (at least that's where I am). When they hit they hit and you deal with it.

Hugs BD

Title: Re: Asking for answers to DaCluster's question
Post by Dragnlance on Feb 17^th, 2006, 8:23am

Quote:

I think after a few years a chronic sufferer just learns to deal with it and doesn't think about it as much (at least that's where I am). When they hit they hit and you deal with it

Bingo!!!

Title: Re: Asking for answers to DaCluster's question
Post by FramCire on Feb 17^th, 2006, 3:26pm

on 02/16/06 at 16:19:09, sandie99 wrote:

I'm on week 14 of this cycle and for some reason I have it in my head that I am going to be chronic. This has actually helped me deal with it much better. If this cycle ends and I go PF for a while, I will be thrilled, but for now coming to grips with being chronic has helped me out quite a bit despite the fact that I am not chronic.

I think prepping myself for the worst and realizing I can handle it has made things easier for me. I am living life more and trying to return to normal instaed of waiting for this cycle to end.

Question for chronics: have you had a medical condition that has stopped the HAs for a while and then returned when it was over?

Title: Re: Asking for answers to DaCluster's question
Post by Dragnlance on Feb 17^th, 2006, 3:53pm

Quote:

Question for chronics: have you had a medical condition that has stopped the HAs for a while and then returned when it was over?

Never.

Been hit by a car, hit by a truck, (bicycles are automatic targets for the drivers here) Crushed my foot... nothing changed, usually had a major hit along with the other pains to make me good and miserable

Title: Re: Asking for answers to DaCluster's question
Post by E-Double on Feb 17^th, 2006, 4:14pm

on 02/17/06 at 15:26:42, FramCire wrote:

I am living life more and trying to return to normal instaed of waiting for this cycle to end.

Good 4 you!!!!!!!

It is what it is my friend!

Title: Re: Asking for answers to DaCluster's question
Post by Sandy_C on Feb 17^th, 2006, 5:16pm

on 02/17/06 at 15:26:42, FramCire wrote:

I think prepping myself for the worst and realizing I can handle it has made things easier for me. I am living life more and trying to return to normal instaed of waiting for this cycle to end.

Thank you. You have just said the words that I (and maybe a lot of others) need to hear. Especially "realizing I can handle it". I have to live my life and in cycle, or out of it, and I am. Your words are words to live by. Thanks again.

Sandy

Title: Re: Asking for answers to DaCluster's question
Post by Roxy on Feb 17^th, 2006, 6:12pm

Chronic and sporadic?

Maybe for some. But in my world, chronic is 4-6 hits a day. Chronic high cycle is 12-15 a day. Neither seem very sporadic to me. Easy is a different matter.....that is a state of mind. Like anything else in life, it is only as difficult as you make it.

Rox