Right before my life turned 180

Thursday, February 16, 2012

Go see live band you say?

So as many of you know, Dystonia, for me has a few "triggers" that can make it much worse. Changes in temp., not enough sleep, walking too far, etc. But often times we discover the "new" triggers as we go about life. We found out a few years ago that watching a live band makes my whole body spasm (it's the bass). BUT THIS WAS before DBS (Brain Surgery)! Now granted, i rested before the show and i did sit the whole time... but it didn't cause full body spasms, just my jaw. So now I know to up the settings on my DBS stimulators and we can rock!! The recovery time of getting dressed, the car ride, 3 bands, the cold, and being up and out till one a.m. was 3 days. So in other words, to get back to low pain and low spasms I had to sleep and rest for 3 days after. But it was so much fun and so good to be out of the house!!!

1 comment:

  1. Hi Amy, I recently experienced an acute dystonic reaction after being prescribed some nausea medication and it was the most horrible thing I've ever experienced in my life. The pain in my jaw and face, the inability to control my movements, being unable to talk or swallow properly... I also had no idea what was going on so I was completely terrified. Fortunately for me I was able to be given an injection at my local hospital to help reverse my reaction to the nausea medication and I was almost completely back to normal after 3-4 hours. When I arrived home, and after a long sleep, I began researching dystonia and was horrified to discover that some people, like yourself, battle with this daily - not just a temporary reaction like myself. Your videos have made me cry a river of tears, for you and your husband and others also battling dystonia every day. My heart goes out to you and I hope that there are new breakthroughs in neurological science/medicine in this area in the very near future. Wishing you all the best, Betty


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