sorry about that


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Posted by mmark on November 17, 1998 at 12:23:07:

In Reply to: Re: only cluster sufferers please! no friends of sufferers! posted by annom. on November 17, 1998 at 11:03:02:

i'm sorry about my outburst,

this is no excuse, but,
its not like
i am only suffering sometimes;
from wake up to sleep, i feel as though someone
has taken a bat to my head
and when the evenings roll around,
my head hurts, a dull but v. powerful constant
pain so strong it frightens me, with an accomp
preassure so powerful i worry that the
front end of my face is going to explode right off
i am frightened when i wake up in the mornings
i don't know how some of you ch people
managed to even get married or have any kind of
life, because i am just walking zombie like
through these last 9 1/2 weeks

then, i get told by some neurologist that
i have vascular headaches/CH's which is a totally
dead end diagnosis, and very convenient
too (!) because nobody knows how they are caused
nobody knows how to deal with them either

now, when i want to check out for myself
whether my symptoms are really cluster headaches
(and i've seen plenty of postings describing
them as sinus similar pain (except excrutiating,
and i can easily identify w/that)),
i get people who
want to tell me how there friends feel.

i was not looking for sympathy -- i was coming to
check the facts...and i think that of all people
ch people would realize the frustration that
is aroused within when you try to get some 'real'
help, and don't get it. i mean, friends and
relatives can identify with the sufferer,
but -- can they say, yes, i can
VERIFY your symptoms because they are like mine.

and i would advise anybody who has been diagnosed
'suspiciously' as cluster headaches because
this diagnosis is an easy way for some doctors
to avoid looking carefully for some other,
cureable, perhaps slightly hidden, cause.

thanks to all who have helped proper, esp Tim,
who, although telling me to 'lose the attitude'
was kind enuf to understand my frustration...


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