Weird one! Cervical collar causing dizziness , weird vision...?

[RecipeForDisaster]

I have been trying to wear a rigid Aspen Vista collar as recommended to me by a dysautonomia doctor. My chiropractor agreed - I probably have craniocervical instability. I have tried several heights and can tolerate them, neck and head wise.
 

When I have the collar on for maybe 15 minutes, I start to get weird symptoms like icy body parts, odd dizziness that does not feel like presyncope (vertigo, I guess), and weird vision impairment. I do have some of these symptoms when I try to turn my head or look straight up.

 

What the heck? I don’t even know which doctor should be interested, because one neurologist tested my blood flow during a head turn, and nothing changed on Doppler(but he had done a scary and painful biopsy right before that, and my BP was very high for me, so I don’t feel that was a good test). Now he is not interested. Most of my other doctors just brush it off. I am pretty sure it’s a sign of something! I can’t really wear a collar. I feel like it’s the front of the collar that I can’t tolerate, but who knows. I am NOT a person who can’t stand stuff touching my neck or tight clothing there. No problem. My HR does not slow in these times. So curious!!

[Jyoti]

I tried an Aspen too, @RecipeForDisasterand with similar results.  It really seemed like a great idea since we were all pretty sure that at least some of my worst symptoms were a result of CCI.  Turns out --upon more investigation--that I actually have rotational AAI and not CCI--so the collar makes even more sense because it prevents inadvertently rotating too far.  Can't rotate much at all, can you, in a hard collar?

But while it gave me a sense of security when I first put it on, after a while--maybe a half hour--I would always start to feel worse in a systemic way.  My vision got blurry, more dizziness, etc.   Someone --I think a chiropractor--suggested that it WAS the chin piece--that it forces more extension than my cervical situation could handle.  Since then I have learned that I have a fair amount of stenosis, so I wonder if the angle the collar imposed created pressure on cervical nerves.  

It sure sounds like something that could be happening for you.  Or similar.  I just stopped using mine.  I mean---what can we do but go with what works and discard that which does not?  Your neurologist may know a lot but can't crack this mystery (or isn't sufficiently interested) and frankly, this is a familiar response to something a doctor cannot unpick: go away, you are imagining things, don't waste my time.  It is unsettling to encounter, but we all know that there are vast realms that medicine does not yet understand and we have to honor what is clear evidence in our own bodies. 

 

[Pistol]

2 hours ago, RecipeForDisaster said:

I don’t even know which doctor should be interested,

@RecipeForDisaster - I would definitely bring this to the attention of your autonomic specialist, since he was the one who p-ordered the collar. 

[Guest KiminOrlando]

There is a good chance with craniocervical instability that it could be putting pressure on your brain stem somehow. I had a similar problem. Did they diagnose you with a standing MRI with flexion?

[RecipeForDisaster]

It’s a little complicated. His office is so bad that I had to put in a complaint against them, and they retaliated, and long story short... I had to fire one of my favorite doctors. I’m certain that if I bring it up to the other neurologists, they’ll say "geez just don’t wear it, then" like it’s something I do for enjoyment. I only care because I think it MEANS something!!! Come on, this must be a clue!
 

I am not diagnosed at all. No standing MRI because no one is really interested. Even the guy who ordered this - "just try a collar". 
 

Very interesting about the rotational vs. otherwise!!! I keep thinking I am NUTS and keep trying again and again. Maybe longer. Maybe shorter (shorter feels worse). Maybe tighter??? 
 

I have never had vertigo, but it feels more like that than my usual dizziness. This is almost like my eyes are rapidly moving. It’s hard to describe. I can go about half an hour myself. What do you do about AAI and how is it diagnosed?

[Abe]

Of all the symptoms that I have and still experienced, this is one I never thought someone else is experiencing.  It has caused me so much stress to the point that I have stopped driving.  Sometimes, the feeling is like every vehicle and objects around me are moving too fast for my eyes to focus on but then sometimes, its like I have lost control of my eyes and I can't intentionally focus on anything.  When I move my neck, I feel like I am going to pass out.  I didn't know anything about this until I watched a video on Craniocervical Instability. I guess I can assume but will want to know for sure if that is my problem.  Seriously, how many issues are we supposed to be dealing with as POTS patients?  It gets too much sometimes.

[RecipeForDisaster]

I know. It seems too unlikely! I really can’t shave under my arms or look upwards at a plane or whatever. 

[CDNPortGrl]

I have the same collar as you and I actually don’t really feel relief. It even bothers my jaw; however a cheap padded whiplash collar from the local drug mart gives me relief. 
 

I’m about to try prolotherapy to deal with my neck issues and see if that helps. Only a few places to my knowledge, do the surgery for CCI and the risks are still high. The one testimony I found online from a young guy, said his POTS went away when he had the surgery. My Flexion and extension x-rays don’t show any issues but it’s not as thorough as a standing MRI.