Chiari Online Support Group

Hey everyone!

I’m 21, from Southern California and I was diagnosed when I was 8. I have lived with my Chiari pretty normally other than not being about to play on my friends trampoline and bounce in the jumpers my parents owned. My Chiari never really effected me and I was able to basically ignore it. It started getting worse when I was about 16. When I would laugh, cough or sit up from laying on my back I would get the most horrible pain in my head, become light headed, and feel like I was going to pass out. It was super scary the first time it happened but eventually I just learned to take deep breaths and that it would pass. The doctor said everything was looking normal and fine but that there might be a little pressure built up and that we could think about surgery but that he didn’t recommend it. I have been living as normal as possible knowing my limits and what triggers the headaches for a while now. Recently, I had a migraine in my shoulders and neck that had me out of work and when I went to urgent care the doctor said he thinks it’s related to my Chiari. Fast forward a week and now my Chiari is really acting up. Every time I stand up I get dizzy and light headed,and I can’t do a lot of walking a cause it also makes me feel dizzy. This has made me miss a lot of work and I can’t see my new neurologist for another 3 weeks. I am getting nervous that with all the problems I’ve been having that I will have to have surgery. My family tries to understand but they don’t really get the pain and the frustration that I’m going through. I thought I’d come on here to get some support and to give it to others who are going through similar things as me.

Hey
All the best …
I hope u get better and don’t need the surgery

1 Like