Reply to CJagan - Headaches

January 19, 2001

I too suffer the same headache problems, in the AM, and during the

day. It is the worst in the AM. I do not believe it is a circulation

problem, at least not blood circulation. After several complaints to

my neurologist, he finally referred me to a headache specialist. I

described my headache to him as a " low-grade / spinal tap " type of

headache. He suspected a low CSF (spinal fluid) pressure. He

measured mine with a lumbar puncture, and it confirmed that I had one

of the lowest spinal fluid pressures he had ever measured.

I have also noticed over a period of time, reviewing all of your " non-

social " e-mails, that many of us have, or have had, cervical spine

problems. It is my position (only my opinion) that this contributes

to the " toxic stress " that seems to afflict all of us.

Apparently, spinal fluid does not circulate as well in the prone

position. He suspected a spinal fluid leak, and I underwent

a " cisternogram " (definitely one of my LEAST favorite tests) which

did not show any leaks (he stated that the test result did not mean

that there WAS NOT a leak). I have tried sleeping in a sitting

position, propped up with pillowd and cushions, but I

can't get a good night's sleep that way.

Your mention of " morning coffee " is what triggered my response to

you. His treatment for my condition was caffein! He had me take

Excedrin (which has a high amount of caffein) and No-Doze.

Apparently, caffein has some enhancing effects on spinal fluid;

making it more efficient. Most people with PLS apparently stay away

from coffee (caffein) because it can aggravate the spasticity.

Currently, I manage my condition with caffein and small doses of

valium.

His next suggestion, in my case, was to try a " blood patch " , to find

and cure the " suspected " leak. He moved away at that point, and I

have not been able to find someone willing to do one. I will be

going on disability soon, and when I have more time, I plan to pursue

this. I will let you know how it turns out.

The doctor's name is RAMADAN. I can't recall his first name, but if

you search Medline (PubMed) under his name and " headache "

or " caffein " , he has written several articles on treatment of low

spinal fluid pressure with caffein.

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