I am so glad that I found this group. Reading many of your posts and comments have helped me significantly over the past few months. I have a few questions about two “unusual” symptoms and their possible relation to Chiari.
For backstory, I am an 18-year-old patient with Ehlers-Danlos Syndrome (hypermobility) and several related comorbidities (MCAS, possible POTS, Raynauds, etc.) I have been seeing my neurologist for two years for chronic motor tics and chronic migraines. I really loved her and trusted her judgment until recently, when she reviewed the brain & cervical MRI (supine) she ordered because of the “new” characteristics of my headaches. The MRI (and a different cervical one from 2015) revealed “mild tonsillar ectopia”. My neurologist is insisting that it’s too minor of a herniation to cause any of my symptoms and that a CINE or upright MRI wouldn’t be necessary. She has defaulted my diagnosis to Occipital Neuralgia. Of course, I do not want Chiari, but from what I have read, I really feel like my symptoms match, and I certainly don’t want to ignore these “low-lying tonsils” if they could cause even more problems. So, assuming that the size of the herniation doesn’t correlate with symptom severity (as I have read), I was wondering if either of these symptoms sounds like “Chiari issues” to you guys?
for lack of a better word, this “sensitivity” began about a year and a half ago. At first, I couldn’t wear scarves because the extra weight & stuffiness from them would cause a headache. Now, even the slight touch of a light necklace, a jacket collar, or a lanyard is enough to set me off. I feel like I won’t be able to get through this cold winter because I have to choose between warmth or a debilitating headache. The headaches start in the base of my skull where my head & neck meet, often travel up to one or both eyes and down to my shoulder(s), causing severe pounding & pressure like someone is drumming in my head. They drain me and make me sensitive to noise & light. Has anyone experienced the neck being so sensitive to light touch? Could it be Chiari, or is it a neck instability issue?
I don’t quite know if it is vertigo for sure, but it’s happened twice now this month. Two weeks ago, I woke up and felt immediately off-balance. The room wasn’t spinning, but the inside of my head felt like I was on a carousel. Bending down, reaching up, or laying down would immediately set it off. The only position I could be in was keeping my head and eyes straight ahead (either sitting or standing, though I do lose my balance and fall back a bit). And, even when I’m not dizzy, I still feel almost foggy behind my eyes and at the base of my skull. I went to my PCP, and she cleaned my ears, checked for infection, and then said it was likely Benign Paroxsymal Positional Vertigo. It went away after a few days on its own, so I figured it was just an episode, but I woke up feeling the same way today. My cardiologist thinks it is just dizziness from POTS, but this is a completely different sensation than when I stand up and feel light-headed. Is this what “vertigo” really is? Could this be Chiari related?
Thank you in advance, and thanks for welcoming me to the site! I look forward to being a part of it and wish you all well in your own health pursuits.