Hello all! I've got Ehlers Danlos syndrome hypermobility type, scoliosis and thoracic outlet syndrome. About two years ago I started noticing a lot of the time when I sneezed, strained, coughed, etc. I had this really severe pain in the back of my head... like a pressure building up then like someone slamming a huge nail into the back of my head.. sometimes it would be so severe I thought I was going throw up or pass out and had to hold onto my head until it slowly went away. Over the years it's slowly gotten worse... happened more often... and over the last couple months I started having a near constant headache at the back of my head. I also have tinnitus in both ears and I constantly hear this swooshing noise.. like listening to a shell. So, anyway... I went to the doctors with information on Chiari and he said it was rare, so doubtful I had it but the type of head pain I'm getting needs to be investigated immediately, so referred me to a neurologist to get an MRI. Is it rare? I mean, He could be right but I feel like it fits.
My main reason for coming here is I recently started getting a sharp pain when I move my eyes around (Sometimes just the one eye, other times both)... could this be related to the constant pressure at the back of my head? It's so painful.. I avoid moving my eyes as much as I can. It also hurts to put any pressure on the eye... like when applying eyeshadow. But the eye itself looks fine and other than the pain when moving it... feels fine. I'm not sure but it just seemed to come about at the same time. Does anyone here with Chiari get this?
Thanks for any advice! xx