So back in late August I saw a geneticist, one of the best in the world, and she diagnosed me with Elhers Danlos Syndrome type 3, POTS, mast cell activation disorder and after getting imaging back in mid September, a Chiari Malformation of 3.5mm.(I know a technical Chari is 5mm or something?) but my symptoms have been really bad for about 6 or 7 months now. Before then I was getting migraines every so often(maybe 5 times a month?) but in June I started noticing that I couldn't write(I'm a writer) without misplacing numbers and letters. Then by late July/early August it was enough to affect my reading and reading comprehension as well(almost like dyslexia which I've never had in the past). At the same time(in early September) my migraines increased in severity and frequency and by the end of the month I was having severe migraines every single day. In October I developed problems with dexterity(mostly aligning things to put them away, like putting something on a hook or whatever) and I also developed a problem with choking and gagging on my food. It's not everyday but it's frequent enough that it's a problem. It seems to be worse on days where my tachycardia is worse which in turn makes me nauseated. It's happening I'd say maybe 3 days out of the week? I had an endoscopy to rule out other causes of the gagging and stuff and it came back normal. So I'm scared it could be neurological. And in December I developed periodic ringing in my ears and more concerning to me pain at the base of my skull and down my neck that won't let up. Because of my Ehlers Danlos I do PT, and medical massage but it isn't helping the neck pain. I'm just concerned about all of it because of how rapidly it has come on? Like I'd give anything to go back to June where I was only having some writing problems and the occasional migraines. I have a neurologist but he doesn't seem to know about any of my conditions. My primary Doctor is more concerned but I'm having trouble getting in to see the neurologist(s). I'm seeing one at UVA and one in Maryland that my geneticist wants me to see but the Maryland appointment isn't until April and UVA has yet to even give me an appointment(even tho my PCP wanted me seen ASAP back in November). So now I'm just in waiting and suffering so bad every day. I don't know what else to do. My migraine medicine has caffeine and agitates my heart rate, I take a beta blocker at night and I don't have enough pain medicine to be taking it every day for headaches especially when it can't get rid of it. Have you guys had similar symptoms due to Chiari? What do you guys do when it gets unbearable(it has been the last few days, my brain feels like it's trying to explode through my eye.) I don't have a reliable Neuro anything to call and my PCPs office never gives him my messages. I feel so lost and I don't know how much longer I can deal with this pain. ☹