Chiari Online Support Group

Vertigo and Neck Sensitivity

#1

Hi all,
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?

Neck Sensitivity
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?

Vertigo
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.

#2

To answer your question, no, it’s not veritgo, exactly. Vertigo is the symptom, not the condition. Several different conditions can cause vertigo, including migraine – as I sit here writing this I have a migraine that’s giving me vertigo that’s exactly as you describe. Although I’m not a medical professional it seems to make sense that if a migraine can cause vertigo than a chiari-related headache/pressure could do so as well. It’s all rooted in pressure in the head.

BPPV is often associated with a minor to severe blow to your head. Less common causes of BPPV include disorders that damage your inner ear or, rarely, damage that occurs during ear surgery or during prolonged positioning on your back, such as in a dentist chair.

azurelle

#3

Welcome to the site. Hope that you find lots of information for your situation. Get a binder, take notes…

To help you out with that, I would suggest that you read a previous post of mine as a response under the posting “MRI - Why is my CHiari ignored” Hopefully, it will help you figure out different specialists’ roles and abilities. Perhaps your neurologist does have the ability to read the actual MRI images in horizontal and sagittal views, but probably not.

Also keep in mind that the occipital dura is innervated but a small portion of the vertebral artery that can be compromised by those low-lying tonsils descending into the foramen magnum. You’ll need to brush up on anatomy or talk to your local anatomist! Basically, the dura (thick layer of connective tissue that envelops the brain) is ischemic - lacks blood. Not having enough blood sends distress signals to your brain that are perceived as pain. Think about sitting on your feet too long.

(I have posted previously that it is the occiput nerve that gets ischemic but this is not correct - i have Chiari brain. I forget things!)

Unfortunately, our brain is not wired to receive distressed signals from the brain’s dural tissue and perceives it as pain. This is where our fine and complex brain’s confuse us and the medical people treating us. Our brain does not know what to do with this dural pain as it makes no sense to it. When the brain has confusing information it makes the situation big and painful so that we deal with it, but we do not know what to do.

Surgery can address the ischemic or lack of blood situation but our brain needs help with neck sensitivity thing. I had the same thing before surgery that did subside for a number of years but also came back after surgery. I did the helpful treatment after surgery as I did not about it before. i see no reason why you could not try it now to help with your neck sensitivity. I can now wear scarves, hats, and collared shirts. Success!

What I did was an exercises programme called “graded motor imagery”. It is an app designed by the Neuro-Orthopedic Institute. It costs $10 for the neck app. This exercise programme helps to normalize the brain’s relationship with a body part that has gone wonky - AKA Chiari.

The end portion of the treatment needs to be different for Chiari sensitivity. If you get to the end I can help you out or even get you started as the directions are not terribly clear.

In regards to your dizziness, I suggest that you read the posting “Dizziness and Chiari” under “Newbies Guide to CHiari”.

Good luck with your research and finding and doing the help that you need.

#4

For what it’s worth, I had decompression surgery from Chiari and had a large syrinx. I didn’t experience either of the symptoms you are describing. I know it’s nice to have a label for what you’re experiencing but try not to make it something it’s not. (I’m not a doctor, just sharing my experience) Praying for healing for you! Hang in there, I hope you get some answers soon.