scales are personal tools, not universal ratings

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Posted by gary ( on January 16, 2000 at 14:21:51:

In Reply to: Pain on the Scales. posted by drummer on January 16, 2000 at 10:23:24:

Bob G posted earlier:
"One person's 3 may be another person's 7. One person may be awakened at the 4 level and others can sleep through someone else's 5. I think Kip meant by a 10 is it's time to go. Outta here. Good Bye! Those people are no longer with us. I like to think they are in a pain-free place now. I've never had a 10, maybe a 9+ but never a 10. As you can see, I'm still here and plan to be for a long time to come."

I developed my own scale years ago
its only purpose is to help me manage my clusters

it takes YEARS of experience for the scale to mean anything, or to be really useful, simply because it takes that long for any individual to get a reasonable idea of how his own case tends to behave

now, I keep a list of attacks, by # and time/day -
that in turn tells me how the pattern is going
(amazing how we can't accurately carry that in our heads)
and I plan my medications & activities accordingly
a #1 is what I call a precursor - I perceive symptoms that an attack is imminent

a #2 hurts for a short time and fades away

a #3 is fairly sharp hot pain, lasts 20 minutes or so - depending on my rest & fitness at the time, I might be able to work through it at simple reptitive tasks, or play a simple attention consuming computer game, to distract me until it's over;
I could make brief verbal exchanges, but certainly not engage in a conversation

a #4 builds within 10 minutes or so to an intense burning pain that pretty much precludes ANY other activity but pretty well managed pacing and mental diversion techniques, but only lasts maybe 1/2 an hour altogether

#5 is a longer #4

#6 is widerspread, or even more intense pain, or both- but fairly short: maybe 20 minutes of the really bad level - I can pace and count & recite, but only with great concentration, or stop counting without realizing it;
is impossible to talk to anybody, even one or two words;

#7 is a #6 that lasts a long time;

#8 is both even MORE intense pain AND long duration (at this stage the intensity & duration seem to feed off each other)
this level is on the border of hysteria, if I can still pace, I fall etc; can't count or recite - only mental control possibe is keening (sort of a semicontrolled moaning)

#9 is the single worst attack event I have ever had - a combination of both the most intense pain sensation and the longest duration -
undescribable physical pain sensation; panic, hysteria, falling, hands & knees, screaming, an hour or more of the worst pain stage
(my most recent 9 was about 10 years ago)

AND there is always only 1 #9, when worse attacks have happened, they define the new #9, and the others slide back to 8s)

this is how I survive the 8s & 9s !
you get through them by understanding it's OK, because it could always be worse

as far as observable symptoms go:

at about a 4 I get flushed, maybe nostril clogs, tears run

around a 6 my eye is real puffy & red, attack area is quite inflamed,

an 8 usually has face looking like I'd been hit in the facew with a baseball bat, blood vessels distended, etc

NONE of us can compare our pain objectively because its severity depends as much on how we process the pain perception, as it does on the actual physical sensation

the MAGIC in learning to deal with the pain is discovering you CAN avoid the 8s & 9s, and bring the running average of the others in a cluster down a couple "points"

which to me is a roaring triumph
think of one person picking up a hot iron frypan by the uncovered handle: screams, throws it across the room and jumps around hollering
(my exwife)
and another person grabs the same pan the same way, says "oh shit - shit - shit -shit " in a tense level voice until they get it safely set back down, & then jump to the sink & run the cold water on their hand
(drummer & me)

{and there ARE some people who would just look at their hand & the pan until smoke curled up from their fingers and say "hmmmmm?"
I get away from people like that ASAP, and don't come back!!!)

in the frypan fiasco:
the first person's 7 or 8 is the second person's 2 or 3 - -
because it ALSO depends on past experience, and - quite frankly - "practice" at getting thru pain

( for reference tho:
we heat with wood stoves, and cook with cast iron, so I get burnt a lot-
for me - leaning a hand on the hot woodstove, or picking up the hot frypan in a full barehand grip,
is an overall experience (intensity x duration)about equal to a 3 CH attack -
so for anyone NOT familiar with CH:
imagine burning yourself that way 2 or 3 times a day, for weeks on end, and calling it a "mild" CH session

frankly, from some of the posts I read,
like where people claim they are "typing their way thru a #10, so excuse their speling" -

if that's their 10,
then my 6s or 7s would kill them on the spot,
just plain dead
from massive systemic shock

but then my mother always used to say, when she saw us boys doing something really dumb and then staring at our wound/burn whatever, saying "wow":

"no brain, no pain"

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