Hello … it’s me again. Trying to use my near death experience a few weeks ago to help others who live with Chiari each day. I also hope those who love them will recognize how very serious Chiari is and that each day is a fragile gift. My wish is you’ll bear with me as I move my way through the steps it takes for me to rebound from this last Chiari attack. My story is but one from a thousand …
This drawing is my attempt to diagram my Chiari headache from yesterday. Many Chiarians live with a ‘small’ headache every day … in the 3 to 5 range.
My headache yesterday was an 8+ by the time I went to bed. These headaches almost always begin on one side – though after a few hours the pain radiates all over. Yesterday’s was on my right side. It started at the base of my skull and the occipital area. The pain ‘rolls’ forward and up, enveloping my ear, jaw, sinuses and lands behind my eye. It feels like my head is in an ever tightening vice – forcefully holding my head in place as someone jabs a red hot rod up and through the top of my spine, into my brain and out my eye socket.
Sounds, lights, smells and movement become unbearable and over whelm my senses causing me to be dizzy, nauseous, disoriented and agitated. The pain radiates down into my neck and shoulders — sharp, throbbing and constant. I – we – never know when they are coming, why they come or how long they will stay. Coughing, laughing, straining can all exacerbate these headaches or make the pain worse.
Early on, I was given every medication and combination of medications you can imagine. Some to be taken daily in an attempt to ward off a headache, and others to be taken at the onset of a headache – but none of them worked. I received monthly full body IV Lidocaine infusions in an attempt to ward them off — did not work. One doctor tried to talk me into an implanted morphine pump – no thank you. I was given dozens of other modalities to use, experimental treatments, suggestions for supplements, diets, exercise, taught meditation, visualization and relaxation, tai chi and yoga, sent to therapy, EFT, CBT and on and on … some help ease the pain but nothing stops the headaches from coming or makes them go away.
It is believed our Chiari headaches are due to swelling of the cerebellum which in turn compresses the brain stem, this combined pressure can impinge or block spinal fluid flow to the brain, spinal cord and central nervous system – WhaLa — headache.
The decompression surgery we undergo is supposed to stabilize the area and help ease this domino effect. However, I have learned these last 15 years there are many things I do that can upset this delicate balance resulting in a one of these miserable headaches.
I truly believe the great majority of Chiarians have the same high tolerance for pain I do — which causes them to push through and power on through pain that would drop another human to their knees. I am sharing again in hopes I can shore up my fellow Warriors. To help them realize how brave, strong and courageous they truly are – I long for them to continue the fight until the answers come. To not let the ‘dark days’ diminish their light – and for those who love them to please … please … help them keep their flame lit.
[Just a little insight into my pain tolerance: I have given birth to my children “naturally – the old fashioned way” – vaginal births, no drugs or medications. I found a focal point to stare at and breathed through the contractions, all the while telling myself this was a temporary discomfort and would soon pass. I never once cried out in pain. So, keeping that in mind – I consider my labor and delivery – at it’s peak – to have been a 7-8 on the pain scale.]
Copyright © 2016 Brenda L. Surin. All Rights Reserved.