I had my follow up with neuro Friday and I told him I'm still having what I call the "flippity eye" attacks going on. He said next time it happens have someone look at my eyes and describe what they're doing. If I'm by myself try and video it happening because he's never heard of such a thing. Let me explain what happens... A couple times a month, out of the blue I get an "attack" that has me hanging on for dear life. What I'm seeing is my left eye is fixed but my right eye can't focus on anything, it seems to be looking around randomly. He asks me what I see and is it possible it only seems as if my left eye is fixed. Truth be told I'm so scared and freaked when it happens, I just start to cry and close my eyes. It only lasts three minutes or so at the most. Then I get nauseous and have to sleep. He thinks what I think is happening isn't really happening. He left it at that and said try to have someone view your eyes when it happens. In trying to google everything that it could be I came upon Vertigo and Nystagmus. Between my ENT and this Neuro I've got the vertigo/dizziness and nausea mostly under control as long as I move slowly, no quick turns and take my meds but this one thing just won't stop. I wouldn't worry about it so much if I knew what it was. Lots of tests with both docs, balance, MRI's, etc. No answers for this one. My ENT has said possible Menieres and sent me to this neuro for evaluation. Does this sound familiar to anyone? I see videos of what Nystagmus looks like from the outside, but what does it look like to the person it's happening to?
Hi There, I think you are correct to worry some. It doesn't sound severe, but best to take care of yourself and not listen to "every" doc. If one or more are not meeting your needs, perhaps another opinion? There are many causes for your symptoms. For me, the nausea came on with dizziness and the "odd eye" feeling. The eye didn't move a lot tho. All of us are different. Being tired goes with the dizzies, very common. I couldn't move my head at all without feeling horribly off. Each eye tried to see different things, if that makes sense. Time really helped. Wishing you good luck and feeling better.
Thanks for the reply. That makes perfect sense and that's how I described it to him. My left eye is looking straight ahead while my right eye is jerking around looking at everything. He kind of threw the ball back in my court by telling me to document it. I can't imagine trying to find the record button on my phone when this is going on. I told my family next time it starts again, make me open my eyes to witness what's going on. The neuro wanted to put me on anti seizure meds but not until I'm sure what's going on. I'm on so many meds now that I'm amazed I haven't had a bad interaction. I guess I'll just take it from here and try to document it. He's a specialist in migraine and ms and I was referred by my ENT who specializes in menieres so I thought I was in good hands with him. We shall see...
i used to get nystagmus during my vertigo attacks, where my eyes would dart back and forth. It was very nerve racking. The room never spun on me, i just got extremely dizzy and my eyes would move back and forth. Trisha
I have nystagmus during my imbalance/vertigo episodes. But I do not realize/feel it. I was neurogically examined in ER once during an episode and that's when they finally realized my episodes had origin in inner ear.
So if you are having Nystagmus, your eyes are moving around but you don't realize it? Your vision doesn't change?
Sorry if I was ambiguous. My nystagmus during episodes may be of low intensity. Only a neurologist was able to see it if he/she moves his index finger horizontally and vertically and I am supposed to follow the tip of the finger with my eyes. Then, during the eye movement, there are some slight jerks in the direction opposite to the eye movement. But I do not realize those. I think this is called positional nystagmus, happening while the eyes are moving. From your description, I would call your symptom a spontaneous nystagmus which occur while eyes are still. There is a test I took many times, called VideoNystagmoGraphy (VNG). I am put a pair of goggles with infrared camera on. The goggles windows are shot so I am in a dark. The PC software follows eye movement and records small, fast jerks. Please note that normal involuntary sloe eyes movement are not nystagmus. Almost every time I have "some" spontaneous nystagmus ever since I started taking this test from time to time.