hmmm? loaded question ? I'll try anyway

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Posted by gary ( on January 01, 19100 at 18:57:19:

In Reply to: A Question. posted by drummer on January 01, 19100 at 15:53:00:

Hey Drum - quite a question !
not sure what you're up to old buddy -
but it's a good discussion root if nothing else
do me a favor,folks - if you're not going to read this slowly & carefully, don't read it at all -

I'm more than a little sick and tired of seeing people obviously "skim thru" different people's substantial posts and go off half-cocked, without a f'ing clue of what was actually said;
that happens WAY too much on CHMB, and is the root of most of the long "pissing contests" we get into which waste our time, CHMB space and make us look like complete morons to anybody checking this out for the first time

I KNOW this is politically incorrect - TOUGH
(by which I mean worrying more about HOW somebody says something than WHAT they say, as well as prounouncing there is a long list of sacred topics that are somehow not subject to being discussed unless it is in the postive)
Simply because I think THAT causes more problems than it solves also.
And I have EVERY bit as much right to that outlook, as the folks who think everything can be solved with lighthearted/softheaded platitudes, have to their personal delusion.
So why not just go away ?
This this board is FAR FAR too valuable to standby and cheerfully watch it continually deteriorate into a very shallow, contentious JrHi level gossip fest, which seems to be the fate of MOST internet discussion BBs IF people don't keep insisting they stay on course & maintain SOME standards of substance & focus

Saying that is my birthday present to myself.
I guess I am no no longer just a cranky SOB;
as of Xmas Day,I am now an offical old fart cranky SOB .
I've had episodic cluster headaches for 30 years, been absolutely diagnosed for 25, and have had them range from 1 month of very minor attacks to nearly 2 years of real intense head exploding #@#$^&*'s - - I am not an expert on cluster headache, but I AM an expert on my own case, and I have been seeking & sifting thru all the info I can get my hands on for the last 20 of those 30 years
this is what I come up with -
I see cluster headache as based in a permanent physical condition, primarily rooted in some exotic/unusual genetic combination and/or physical defect. I tend strongly toward the genetic aspect, simply because there is such a high level of standard features of the disease in people with all sorts of physical & health history. It seems to me if it were the result of a random physical defect/injury, we would not see the "classic" condition repeated so consistently, down to the tiniest details.
NOTE: We need to realize that the area of genetic determinism is a lot more complex than simply whether our parents or gradparents pased on some trait to us. That works for JrHi science, but not much further.

When this unknown susceptability establishing condition is present in an individual, and ONLY if it is present to begin with, then some as-yet undetermined aggravator(trigger) or a combination of more than one, CAN set up a condition in that individual which leads to a periodic sustained malfunction of the nervous system, in the areas that direct bodily chemical response to temporal stimuli (could be environmental conditions, injested material,psychosomatic effects such as anxiety, depression, etc.....or some combination thereof)

This periodic malfunction is what we call the "cluster" and DOES not require the severe attacks to be present or diagnosable (though without them it is very tricky to recognize unless you are VERY experienced)

I have come to see the entire cluster period as a continuous spell of illness, in which the attacks are repeated "spikes" in the problem. Think of a thunderstorm - the entire storm is large & continuous, with wind, rain, dark cloud cover, falling temperature etc (THAT is the cluster).
Within the storm there are repeated short violent events (lightning) THOSE are the attacks.

There can be a storm without lightning, or with very little, but there isn;t going to be lightning with it being in the storm.

Once in the period of malfunction (cluster), the body's neurochemistry system goes unstable in some manner, pretty certainly related to function of the trigeminal nerve cluster - and levels of controlling hormones (melatonin-> seratonin->testosterone, etc) range from extreme to extreme - this erratic stimulation provokes the individual, painful "attacks".

It is POSSIBLE that the attacks are actually a "misfiring" of the body's attempt to regulate (rebalance) itself.

I do NOT believe they are the result of any biological contaminant such as fungus, bacteria, virus etc.

I do NOT believe the presence of the overall condition OR the start/end of the cluster periods is related to any emotional factor BUT I DO believe that WHEN in a cluster, socalled "stress" and/or lack of regular sufficient rest CAN make the frequency and intensity of the attacks worse.

I have no problem with the classic oneisdedness-
in fact when I think it through it falls into this theory pretty well -
nothing is perfectly symmetrical in our bodies-
we have dominant hands, dominant eyes, slight differences in how we move our legs/feet when we walk, etc - - there is nothing odd in the idea that one side's trigeminal branching is more or less susceptible to the disturbance than the other

also nothing negating in the fact that on rare occasions people have the cluster on the "off side", but never switching back & forth in a given cluster - that would fit with the "attempt to autoregulate theory of the attacks - the stronger or weaker (whichever is the case) side will absorb the imbalance first, and the attack event will prevent the problem from "spreading"
to the other side, and it becomes selfperpetuating

Episodic vs Chronic

on this point I am a little less convinced of what I have learned -
at this point I am leaning toward the idea that there IS a chronic form that is different from the episodic(classic) form BUT the difference is very very slight biologically
(yeah, I know the EFFECT is very big from our individual outlooks - continuous attacks instead of periodic remissions, but that doesn't mean the basic biology which leads to episodic or chronic is a big difference, looked at in a model of the overall syndrome)

I feel now the standard defintion of chronic as being 12 months or more of attacks without a remisiion greater than 2 weeks, is inappropriately simple and doesn't recognize a VERY possible taxonomic difference between a "true" chronic and a very long episode.

I used to say I "went chronic" for nearly 2 years about 20 years ago BUT I now think that was just a long long episode
This is based on a lot of discussion with folks like Drummer who have ALSO really been working on building a knowledge base AND who are "truly" chronic - ie: year after year after year without a remission, but USUALLY at a slightly lesser rate/intensity of attack - when looked at over a long period

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