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sacolucci

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Posts: 1
Reply with quote  #1 
About 7 months ago, I awoke in the middle of the night very disorientated. The room was not spinning but I was very uneasy inside and dizzy.

The next morning, I felt "off" with a large amount of brain fog. I was extremely dizzy looking to the right or tilting my head to the right. I then suffered from a lot of migraines and later realized, I had BPPV. Although no one diagnosed me with the dix-hallpike, I did have spinning when I did the Epley Maneuver and it last for about 5-10 seconds. 

I managed to stop the spinning by repeatedly performing the Epley but am left with off-balance sensation. I also have a hard time looking left or right because I can get extreme dizzy sensations. I have been checked by neurologists and three ENTs who can't find any nytagmus anymore and don't know why I am still dizzy. 

Over this time, I have developed Hypercusis and a faint tinnitus which make me worry something else is going on. Also, have some faint aural fullness. The tests I have had are: 

MRI Brain = normal 
CT Scan head = normal 
X-RAY spine = normal 
Blood tests = normal 
Balance testing = normal 
Meniere's Test = normal 
Hearing Test = normal 

The bursts of dizziness are so unpredictable and I am stumped and so is everyone else. They can no longer find any nystagmus to say that this is BPPV. It doesn't quite fit the labyrinthitis bill because I didn't have severe vertigo fofr 1-3 days and it was positional.  Does anyone have any idea what this could be?

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EDogg

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Posts: 174
Reply with quote  #2 
Sacolucci,

So sorry to hear about your suffering with this. It sounds like you have been very proactive and had many consultations and tests performed, which is helpful in ruling out a lot of different causes. I am assuming you have seen an ear specialist ENT (neuro-otologist), not just general ENTs at this point. If not, you might want to pursue their input. General ENTs seem to often know very little about hyperacusis, or tinnitus for that matter. You might also consider consulting an audiologist who specializes in T&H (again not a generalist).

Does your dizziness seem to be provoked by sounds? There is a subtype of hyperacusis called vestibular hyperacusis, which causes dizziness, nausea, headaches, etc.. with exposure to sound, and sometimes can share symptoms (overlap)with cochlear hyperacusis. A savvy neuro-otologist or audiologist might be able to address this, if pertinent in your case.

Hoping you are able to find some answers!
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