About a year ago I woke up to a severe bout of vertigo. First time in my life ever having it. They did a few tests, positional exercises etc. Nothing helped and they never came up with a positive diagnosis. They wrote it off as BPV and sent me on with my life. It went away on it's own after about 6 weeks.

Two weeks ago, I jump out of bed, am very nauseous, and fall down right away. I am having trouble keeping balance while walking. I always feel like I’m going to tip over to my left and fall. When I walk it feels like my brain is sloshing in my head and when I walk down stairs, it feels like my eyes are moving separately matching my feet instead of whatever I’m gazing at. I have fallen down a couple of time when I get a little too confident and don’t guard my walking. NO VERTIGO. I did have a very bad sinus infection at this time and also before the incident a year ago.

I went and got anti-biotics from my GP and was sent to the ear nose throat. The ear nose throat found vertical nystagmus, said that was indicative of CNS damage, not inner ear and off I went for an MRI.

I did also have some tingling in extremities and face etc. The MRI was negative. She did find partial hearing loss in left ear since my normal hearing test in January. 18 something loss she called it but it wasn’t percent she said. I also had trouble with some of the word distiguishing tests. I’m due back to Neurologist and a new ear nose throat in a week. I did not like the bed side of this one at all. That's a whole other story. Three different people told me to find a different one when they asked who I went to so I know I'm nuts in that regard anyway.

At this point I have, the hearing loss, ringing in ears, fullness in ear, sensation of fluid leaking in ears (sporadic), the dizziness without vertigo sensation, and sensation of an unsteady gait. I am VERY nauseous all the time. Meds help but don’t eliminate it. I have double vision in my left eye only. The second image is below and to the right of primary image and I only have this when I’m feeling totally exhausted. The tingling sensations are very mild now hardly aware at all but there. After a bad day of this stuff I am completely exhausted. I just slept 19 hours after the work week all the trips to Doctor’s yesterday.

Here is my real question/concern. When I roll over in bed at night with my eyes closed I get very nauseous and have the sensation that I am having vertigo just like I did a year ago. I can even “see” or “feel” what I perceive as horizontal nystagmus movement on my closed eyelids, BUT, when I open my eyes, no vertigo / no nystagmus sensation. When I walk or sit up I’m moving my whole body instead of my neck to look other directions to guard against the vertigo that I don’t have just like I did when I did have it. I cannot create vertigo in my vision no matter how hard I try, yet, I feel in my head just like I did when I had it. If I’m sitting up and close my eyes and tilt head to each side I swear I’m going to tip right out of the chair. Also lots of pain at base of skull top of neck but I’m writing that off to tension from guarding my movements so much.

Does anybody else experience this or know what I’m talking about. I feel like I have vertigo in my head but not in my eyes is maybe the best way to put it?

You're not crazy! :D

I can relate to some of your symptoms but not all of them. I'm sure others here will be able to come up with more info than me.

Some of what you describe does sound like BPPV although during the "acute phase" the nystagmus should be very visible when they do the tests. I've been diagnosed with it so far, and I do get a little of what you're talking about. After I've had a real BPPV attack, lying in bed with eyes closed, especially on the affected side, I sometimes feel like things are "shifting." Sort of like the beginning of the spinning type vertigo but that's how far it goes and it subsides immediately when I open my eyes.

Try to get referred to a specialist. Neurotologist would be the one you want to see. ENTs don't generally have any special training in vertigo/dizzy disorders. Also read up on this stuff. Educate yourself. Doctors don't know everything and sometimes don't care to dig deeper.

Good luck, keep us updated!


Edit: I just reread your last paragraph again. A year ago when you had this and went to the doctor, did they see any nystagmus at all? What kind of test did your ENT do that produced the vertical nystagmus? Did you feel vertigo when he did that test? Did he do the test where they have you turn your head to one side, then lie down quickly with your head hanging? If so, did that make you feel dizzy at all?

The part about when you close your eyes, you feel vertigo but not when you open them: usually your body, your vision, and your ears together determine where you are in space. When your ears are off, you rely more on your vision. Closing your eyes takes that away obviously. You can't focus on something to "counteract" the sensation you're getting from your ear that you're moving when in fact you're not.

...if that makes sense. I just took a nap, not fully awake yet. :)

Hi Bubbab,
BPV does not really go away, apparently. It recurs in a different form. In 2004I had the typical BPV where the room spun in a clockwise direction when I sat up or lied down. It went away in 6 weeks. I took Meclizine 3 times a day. Then in 2007, about 5 months ago, I had a recurrence. This time there was no spinning visual, but every time I tilted my head back or forward all the way I would have to hold on to something. This symptom went away after 2 weeks with the Meclizine Now, just the other day I noticed when I closed my eye I detected spinning in a clockwise direction, but when I opened my eyes it stopped. This only lasted 1 day, and I am fine now. I had gotten a shot at the dentist on the upper gum just over the front tooth and it numbed my nose and I think this was disorienting to the equilibrium. Perhaps the sinus is involved. If your symptoms persist perhaps you should try taking Meclizine. It's a stronger version of Dramamine. I have had tinnitis in the past after a middle ear infection and I know the full feeling in the ear you mentioned. I would hear this awful ticking sound and my ear became highly reactive to certain noises like running water or the crumpling of paper. The only thing that cured this awful symptom was Prednisone. This makes me think there was an inflamation of the tissue surrounding a nerve somewhere in the inner ear. Perhaps you should try Prednisone. Hope you are feeling better.

Lauren