Sharing the trial and error learned lessons of a MS spouse caregiver / carer about family, home care, and transition to the care facility era from 23 years of living with Multiple Sclerosis as a family ... a ‘warts and all’ picture of living with MS.
Preparing for my recent yearly physical I needed to review my notes and records from my Spring episode of ClusterHeadaches.
During an episode (when not actually writhing through a cluster headache) I find myself meticulously recording times, duration, intensity, medications, frankly just about anything looking for patterns or clues.
The older you get the more often you find yourself looking at a new face instead of your previous medical guru. When cluster headaches ARE your medical history for 20 years this is never a good thing.
My first question was “What do you know about clusterheadaches?” The answer was so scarily uniformed, the rest of the physical blurred.
To decades ago when I first entered these circles of hell, information was nowhere to be found. Of course a large part of that had to do with misdiagnosis.
Years were wasted with misdiagnosis and treatment for sinus headaches, TMJ, allergies, and too much doubt while I screamed into a pillow in our cellar trying not to wake or worry Patti struggling with MS and our sleeping daughter.
I was even told that people in pain sometimes exaggerate their pain. Tolerance varies between people. WTF!!!
Finally a change in insurance carriers necessitated a change in primary care physician and I stumbled into not only a physician who believed my descriptions of pain but was willing to work with me to find a solution. Together we discovered cluster headaches.
Zomig finally appeared in 1997. As far as I am concerned Cluster Headache history should be divided by this date, BZ / AZ.
In retrospect Zomig was slow to take affect but who cared the point was finally something could tame the beast eating my brains.
Lost in 1997, I was interrupted by “Mr. Leer, did you hear me?” … “No, I was having a daymare!”
Why doesn't medical knowledge seem to improve? Why do people suffer needlessly? Next patient …