I've been told that Chiari and high temperatures don't mix.
In the past, during hot, hot, hot Mississippi summers, I remember feeling like my body was weighted down in the heat, like sand bags were sitting on my shoulders daring me to make a move.
See-I don't know if that was a normal feeling, my normal wasn't everyone else's normal.
I kept hearing people say that heat made them worse, well, I've stayed out of the heat, so I didn't know for sure.
I'm one of those "seeing is believing" people.
You could call me hard-headed, but that would be kind of a joke since my head as a perforation in the back.
I set out to draw my own conclusions about the heat.
For me--it went like this:
I spent about 30 minutes out in the direct sunlight at a car show with my husband this past weekend.
I was fine, sipping water..no problem.
Suddenly, this pulsating started.
The back of my head, where my zipper is, was pounding.
I could feel every pulsation of CSF coursing through my constricted cranium.
An Olympic-sized Chiari headache ensued..and that is all I could think of. The headache, the pulsing.and a time or two I thought I might pass out.
Not wanting to be a poor sport, I said nothing to my husband.
I smiled, answered his questions and kept my eyes focused directly ahead of me.
I became afraid to turn my head, for fear vertigo may attack me.
I did not complain or even whimper.
After a few minutes, he looked at me and said, "It's time to go, you're fading fast".
I mustered up a little enthusiasm and said, "Oh no, we don't have to. " (all the while saying in my head, "Thank You, Jesus!")
We made our way to our car, got in, turned the A/C on and started to cool off.
Cooling off took a good 30-45 minutes.
Then I noticed a swollen spot on the back of my head, the pulsating was still in place and the swollen spot was super tender. I kept drinking water and wishing I had a Valium, or a Lortab, or even a razor blade..anything to end the pulsating and the headache. Then, Bob started asking questions. He needed directions to our next stop. Oh my gosh, really..I'm trying to not freak out here!
As I opened my mouth to speak, I realized it was very difficult to get my words out.
For an hour or two I felt like I was right back at my immediate post-op state.
My words continued to stack on top of each other and I slowly unstacked them and got them out. Why on Earth did the heat make it so difficult to speak?
We made the long trip back home (horrible traffic) and I eventually took some meds and my headache calmed down to a tolerable level.
I've not been pain free since, but I can live with it. As a matter of fact, I don't know the last time, if ever, that I've been 100% pain free. Pain is just a way of life for folks like me.
So..I've now contributed my time, energy and pain for the greater good.
Once and for all I've found the truth.
It is a proven fact: Chiari and heat do NOT mix.
Do not attempt this experiment at home and if it's hotter than 85 degrees, please proceed with caution.