This isn't really a question, but more of a semi-funny story that I figured I'd share..
I finally get into see a guy at Columbia (not the really famous Chiari guy, Feldstein, but still - someone on his 'team'). This guy is shaking his head at me while I"m going through the list of symptoms.. totally unimpressed. I explained I have had the headaches off and on, but had the absolute worst one of my life over last weekend (lasted the full three days, I could barely move) so much so that I was considering going to the hospital bc the pain was more intense than anything I'd ever felt... and he's like "yup, sounds like a chiari headache" - that's it. He was more concerned with whether I could still walk (!) and said he didn't recommend any further MRIs.. which is different from what I"ve heard on here. I also thought it was funny that he told me to 'try to avoid doing things that I know aggravate the chiari' - after I've told him that simply being upright seems to bring on my symptoms, and they are constant... all day, every day, since May - but I should avoid doing what, sitting up?! I felt like he was nuts but am going back for a more comprehensive consult as he got called out for emergency surgery on a 5 year old.
A little disappointed over all, but I'm sure many of you are sadly, used to this or have experienced it too.
I've noticed my right foot dragging sometimes when I get up to walk.. not all the time, and before I was attributing it to my clumsiness or whatever... I constantly make excuses to myself like I'm getting old, etc. - but I'm not yet 30. I'm not sure if the foot dragging and me missing the walls (this happpened on thanksgiving last - I go to lean on a wall and fall into it, having misjudged how far I am from it or something.. my family is used to me being a total clutz so I don't think it surprises them either. How would I know if these are Chiari symptoms!?
The doc also mentioned Topamax as a possibility for the headaches.
If anyone has anything to share.. I would love to hear it. I feel like I'm going absolutely insane. One minute I feel like I'm reacting appropriately to something life changing.. the next I feel like maybe I'm exaggerating.. then my head starts to pound.. this is ridiculous!
Nicole