I have Ehlers Danlos Syndrome Type 3 (Hypermobile) and just recently was dx. I am 26. When I was 13 I had an episode of vertigo that lasted just seconds but dropped me to the floor. Ever since that day I continued to have random episodes of vertigo and/or ataxia like symptoms (disequilibrium... couldn't walk straight). The episodes came maybe once every 3-6 months for most of HS. So I could work around it. (Dr. told me it was stress caused) During college my episodes got worse and more frequent. Besides just ataxia I also had slow processing, slurred speech, saying wrong words, and it lasted sometimes from 1 min to an hour with disequilibrium lasting until the next day. Fast forward a few years I am married, I have a 1 year old son... I started having my episodes almost daily. Plus now my knees were buckling and sometimes my legs felt so weak I couldn't walk (when I wasn't in an episode I had full muscle strength). Also I started feeling this weird sensation in the back of my head. Sometimes I feel like I am going to pass out black (rarely)... most times my body feels like it is losing control and I am awake but collapsing. It is a terrifying experience. I have been to The Chiari Institute in NY and was not given a dx of Chiari because I don't have headaches. My cerebral tonsils are low lying (1-2 mm herniation) and I have a very mild CSF blockage. Dr. Kula referred me to Dr. Francomano for EDS. She confirmed that dx but could not explain my neurological symptoms. I do not show any neurological problems when I'm evaluated in the Dr. Office except that I can't hold my balance with my eyes closed. Can anyone relate to this? I'm not sure where else to go for answers... Tilt table was negative for POTS No heart problems, no seizures, no strokes, no ms... Only possibility that is still on the table is Episodic Ataxia. Which I have to get a genetic test for and the lab that my neuro had me call doesn't test for it... lol Another idea I have from reading these forums is Gluten Ataxia... very new idea to me, but I'm totally up for going GF if I get my life back. Can anyone relate to these issues/offer advice or insight? Any Drs you'd recommend seeing? Thanks so much!!