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Cluster Headache Help and Support >> Cluster Headache Specific >> Chronic vs Episodic
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Message started by jlcalbre on Feb 19th, 2010 at 10:10am

Title: Chronic vs Episodic
Post by jlcalbre on Feb 19th, 2010 at 10:10am
After finding this board and learing more in the last month than I have in the last 13 years, I have been thinking a lot about the patterns of my headaches and my experiences with them.  I have always considered myself episodic and not chronic, meaning I would only have periods of headaches a once or twice a year.  I have been on daily preventatives since I was diagnosed whether I was in cycle or not.  On a number of occasions over the years, when I had been many, many months without a headache, I tried to get off my preventative meds.  Without fail, I would almost instantly begin to have headaches which would subside once I started back on the meds.

As I am now in an "episode" that is 10 weeks and counting, which is by far the longest ever (they usually don't go past 2 weeks), I have come to a realization that maybe I am a actually chronic sufferer whose headaches are mostly controlled by preventatives and who sometimes has episodes where my headaches just can't be controlled by anything.

Does that conclusion make sense to anyone?  Has anyone moved from episodic to chronic or vice versa?

Title: Re: Chronic vs Episodic
Post by Bob_Johnson on Feb 19th, 2010 at 12:04pm
By the strict definition of "episodic" you are episodic.

That you have found a way to keep our "friend" at bay is something to appreciate. I've known several folks who stay on their preventives 100% for this very reason.

Frankly, there is so much unknown about CH that I'm personally content to just know how to stay in control of the present.....

Title: Re: Chronic vs Episodic
Post by seaworthy on Feb 19th, 2010 at 4:04pm
IHS Diagnostic Criteria:

Chronic

Attacks recur over >1 year without remission periods or with remission periods lasting <1 month

I believe the 1 month window was changed to 14 days

Title: Re: Chronic vs Episodic
Post by jlcalbre on Feb 19th, 2010 at 4:39pm
I guess my thought is, is it truly a remission period when it is only kept at bay by medication?  My repeated experience is that when I stop taking a daily med, the headaches immediately start back and seem to immediately stop when I resume the meds.  That would indicate to me that I am not truly in remission.  The mechanism of the headache (whatever that is) is still there, I have just found a medication that is keeping it in check.  I could probably take Imitrex every 8 hours for the rest of my life and never have another headache again (and probably a heart attack in the process), but that doesn't mean I'm truly in remission. 

A true remission period, to me, would be a period in which that mechanism went dormant and was inactive on it's own, not as the result of an outside force, such as meds.

In the end I guess it doesn't really matter one way or the other.  As Bob said, controlling the present can be enough.  This is just some Friday afternoon contemplation!

Title: Re: Chronic vs Episodic
Post by Val_ on Feb 19th, 2010 at 5:25pm

jlcalbre wrote on Feb 19th, 2010 at 4:39pm:
I guess my thought is, is it truly a remission period when it is only kept at bay by medication?  My repeated experience is that when I stop taking a daily med, the headaches immediately start back and seem to immediately stop when I resume the meds.  That would indicate to me that I am not truly in remission.

A thought to add to your contemplation -
Remission is Remission!!!  Not having headaches - be it with meds or not, is a GReaT thing!!  I will take those times when I get them and be glad for them, even though they are sporadic throughout my days. 
Think about it though - you have times when your CH breaks through your "normal" preventative regimen - this baseline med level keeps you where you need to be chemically in your head to be in remission. ;)
I am chronic, and no preventative med has Yet proven to stop my headaches - only abortive O2 per headache - between 60-75% of the time... depends on how fast I can get to it, of course.   :P 
Anyway, you have the right overall attitude, as Bob suggests - live in the now.  Do what you can as they come!

Val

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