First off, I am NOT diagnosed with Chiari, but I do have a cervical stenosis diagnosis. I have life-limiting symptoms and I have read about Chiari for years and just keep coming back to it for some reason.
Let me give my history. 15 years ago my left ear began ringing, and none of the tests really showed anything. No tumor. Then 10 years ago I gave up driving because my eyes would not stay focused on the road. It's like they kept wanting to "move". Plus, driving at 55 MPH was way too much stimuli coming at me too fast to pay attention to driving. Also during that time, I noticed that while driving, if I had to glance at my kids in the back seat, then when I looked back forward, I would see stars. I didn't feel dizzy or anything, so I just kind of ignored it and learned not to turn my neck very much.
Around 6-7 years ago, I went through a time where rolling over in bed my neck would give a loud "pop" noise, which I had never had before. I didn't notice any direct effects from it, just thought I was getting old(at 45) and the old bones were wearing out.
Then, 6 years ago I began getting lightheaded with standing. I had a time-limit of about 10 minutes, and then the heart racing would be too much so I would sit. I went to doctors who diagnosed it basically as orthostatic intolerance(later as POTS). As the years have gone by, I mostly now stay at home, as I can't drive and can't stand long enough to shop. Over the last few years I have become extremely heat intolerant, sensitive to noise, sensitive to light, and sensitive to touch(a "pat" on my back actually hurts me).
Now, when I do try and walk, what my eyes see is kind of like trying to walk and look through a camera at the same time. My whole visual field "jumps" with my steps. I find that I just end up looking at the ground when I walk.
Another problem, for example, is when I shower. I cannot tilt my head up to rinse my hair or face, as that just brings on the lightheadedness and unsteadiness(same with closing eyes to rinse face).
The thing that makes me wonder about Chiari is, I have to sit kind of slumpy. I absolutely cannot sit up in a straightback chair, as it makes my heart race and all the same symptoms I get from standing. I wonder if, as I sit all slumpy, that that angle is better for my neck and skull. Does that make any sense? It is like having my neck straight or extended is not good for me.
I don't have any headaches, but constantly changing head pressure from the whole beginning. It's odd, I had to do a test a few weeks ago where I had to blow really hard for 15 seconds, and do it 3 times. Of course, I felt awful afterwards, all lightheaded, eyes pounding, etc. and when I was done and went to leave, I kept tripping over my feet. The nurse asked if I was okay, and I was like yea, I don't know why I am doing that. After reading about Chiari, I see where any forceful pressure can aggravate bodily things.
Can anyone relate? I am so tired of not having anyone know why I am like this.