Posted by Debbie (188.8.131.52) on November 23, 1999 at 07:22:18:
I am 56 years old going on 80. Not linked to the net
personally for financial reasons. Daughter located your
website. I have never come accross another head banger
in my 35 years (12 as a chronic sufferer) of CH, so you
can imagine the relief when my daughter presented me
with volumes of hard copies of info from your site. Like
most of your head bangers I too have had to study volumes of
literature re CH acquired by my daughter from the medical
library from UCT. I had found that GPs and neuros are
clueless in this area. The two shrinks I have consulted
have at least had the good grace to listen without
I used to suffer from migranes and thought that there could be
no pain to equal them. Then one morning at around 1:30 I
was awakened by a pain on the right side of my head which
was so violent that I thought I must have a brain tumor.
I did the mandatory head banging, pacing, writhing on the ground, etc
for the 45 duration. As with the other poor nut crackers
on your web site, I was diagnosed as suffering from migrane (having
formally been a sufferer I protested - on deaf ears of course).
I was prescribed all of the "ots - cafergot, dixitrot,
etc" no improvement. (this was during 1965 - 1968)
I was then told I had an astigmatism and was prescribed
specs. I could now bang the old nut with specs on - an
intellectual looking head banger. A visit to another
optomitrist revealed that I did not have astigmatism: just
an expensive pair of specs which I could use to amuse
my friends (after removing the lenses). Great fun at
parties!!! Only I never get invited. Why?? mmm
Next was the sinus trip. After drilling and strip-mining
in my nasal cavaties for some time, they finally decided
that this was a non-economically viable mine. Back to the
migrane trip. Finally in 1968 a GP (who must have paid
attention in med school when diagnosing of the blatent signs was
of CH was on the menu) said CH! my son, my the Lord have
mercy on your soul!!
I was treated with Benzo's (lexitan), syndols (high paracetamol, low codine)
and deseryl, all on advise of a neuro. Helped a bit on condition
that I used between 50/60 syndols and 10x the benzo's
prescribed per attack. Goodbye liver! I was then
guinea-pigged with the migrane aids again and after that with inderal,
oxygen and finally lithium. I was on lithium for 18 months. I
became a zombie who banged his head daily. Not good
enough to qualify for a west-end solo gig. I was finally
told to scrap the lithium. I was then required to take
alcohol (no, not the fun way) by means of injections into
the trigeminal nerve ganglia (below the frontal lobe of the brain)
No intoxication but no relief either. I have not had a
drink for 25 years but smoke 40 per day.
After attempting a few more of the known aids of the 60's and
early 70's, my GP was obliged to hand me over to a shrink and a
neuro to take their turns at helping me. Catscans, exhyphon rays
and MRIs revealed nothing. There was a brain there - it just
wasnt installed upside down or what ever they expected to find)
More oxygen (still no joy). then told of new miracle aid "imetrix".
Expensive little two packs (fortunately covered by my med scheme)
unfortunately had no effect after taking 12ml daily for
two months. Back to head banging, reducing furniture to
kindling, etc. Have been prescibed prednisone, prednisolone,
tricyclics, monomaine, oxidaise inhibitors (tegretol) and all
of the other standard concoctions used by your other poor souls (the
brand names are different here in S.A but I managed to find out most
local names from my pharmacist) Yup! back to head banging.
Do I qualify as an officer as the Stubborn Crew yet?
Lost my job as a state auditor inspector (try working with 60 syndols and 50x 10ml
valium for breakfast); my first wife, my band (I was lead vocalist and
bassist - they could no longer put up with my "party trick"); my house, my
car. I lucked out by getting custody of my 15 year daughter. She had never
seen me without CH so she was a hardened little trooper. I now receive a
disability grant and live in a converted garage with my second wife (who suffers
from M.S and osteoporosis)/we call it the cripple club.
Shrink agreed to dispense with prophylactic aids in favour of pain
reduction. Was on 25mg morphine for couple of months. It cut the
pain and cracked some cycles. This was much better. Only
problem constipation. Was switched to pethidine hydrochloride (
100mg) in two ml amps (I.M.I - intreveneously in extreme/emergency
cases). This is where I am at present. This is the only way
of taking a few days off each month and the 30 amps monthly is truly
a God-send. For the rest, I simply surf the ocean of pain and wait
for my next allocated day of freedom. During my 12+ years chronic phase
I have had one remission (1991/1992) of 19 months. I have subsequently
suffered at least 2/3 x 2/4 hours attacks EVERY SINGLE DAY except those
days I choose to take off with the aid of my blessed pethedine.
I have had at least 6 CHs which have exceeded 5 hours AT PEAK! Is this
some kind of record? Ic bob, your "symphony for a devil" was nothing short
of pure genius. It really says it all! Dont get a big head, larger auditorium
for the beast to play in (better accoustics). My heartfelt thanks for your website.
Hope to God you're Y2K compliant.
Hope you havent fallen asleep. thats all for now.
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