They’re baaack …
It has been a 22 month reprieve for me but as they have for 20 years an episode of Cluster Headaches again rules my daily life.
"Suicide headaches" was the earliest attempt to describe the severity of cluster headaches being able ‘to take normal men and force them to commit suicide’.
Women with cluster headaches describe the pain as worse than giving birth. Imagine giving birth above your eye without anesthetic 2 or 3 times a day, for eight weeks at a time.
Debilitating, disabling, and beyond any definition of pain they become your life for the duration of the episode.
Since my last episode I was surprised to discover the pioneering of videos related to Cluster Headaches on You Tube. This first video is a most creative attempt using the music video format to explain cluster headaches.
http://www.youtube.com/watch?v=dm1Xi1a39dk
This second is REALITY and takes guts to watch. It takes even more guts to leave a camera on and capture what happens as the hell from a cluster headache destroys you.
http://www.youtube.com/watch?v=LAf_QFmTPkw
I writhed as I watched knowing too many years of such attacks. To avoid waking anyone, I have learned to chew on towels and scream into pillows. IF God is in a merciful mood I black out at the peak of pain and awaken later on the floor. Sadly, rarely is God merciful.
Soon sleep deprivation is in a neck to neck race with pain. I live trying for brief cat naps.
Through two decades of episodes while spouse caregiving for Multiple Sclerosis and parenting a child through infant to adult, human empathy from others was inherent. Family sees pain and results in caring unspoken adjustments in their own needs and behaviors.
New to this episode is living with Autism in our home. From what I have observed of Autism there is no awareness of another, nor resulting empathy for anyone else.
The time ahead will certainly test Friedrich Nietzsche’s, “What does not destroy me, makes me stronger.”
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
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.
I suffered for years with headaches that were so piercing I would have blackout episodes. They told me I was suffering but they couldn't put a name to it. That looks and sounds exactly what I went through. Surprisingly I only have one occasionally (if I'm lucky only 1 episode a year) since I went Deaf. I always contributed it to the nerves going haywire in my ears causing the headaches. Now I wonder...(Hugs)Indigo
ReplyDelete(((Patrick))) I'm so sorry; they sound awful; I have typed reports with patients with cluster headaches but I had no idea the severity of them; they sound just right out horrible!!! I can only hope you find relief from them soon, but I'm sure you know the pattern of them.
ReplyDeleteI get you though with the concept of lack of empathy/sympathy from an autistic person in this situation. I had a wisdom tooth pulled years go before my daughter's diagnosis. When told that I wasn't feeling well, she said "I sure hope I don't have to help around the house for a long time". Gotta love them :)
hope you feel better soon!
betty
How you handle your full plate I will never know. Americans seem so unwell in the last 50 years---what gives?
ReplyDelete