Well I have had neuro symptoms for about 7 years now, however the hearing issues only just started last April.
I do have trigeminal neuralgia on my left side, possibly right side now, so originally I (and the ER doc) thought my hearing issues were related to that. I had just moved here to SW FL, so I didn't have a neuro here yet. I am now at Mayo Jacksonville... Here is what happened:
-April two episodes of sponataneous hearing loss, lasted about 30 mins, only in left ear. Like a switched was flipped off then back on. FREAKY!
-Since then I get a numb sensation in my inner ear, sometimes pain, which I thought was genicualte neuralgia but mayo doc said it didn't seem like it. Along with this my hemifacial spasm may or may not flare on that side which results in my cheek "snarling", amusing, huh? haha
-In August I had a consult with ENT. Auditory MRI didn't show acoustic neuromas. Went to an audiologist- hearing report was withing normal limits.
-Just this last novemeber I woke up with the sound of a train in both ears, bouncing between ears, then focused in left ear. it lasted 5 days. During this time if I bent my head down or side to side it took a few seconds for my eyes to catch up and I got SOOOO dizzy. Not spinning so much but more like I was swaying. I did trip sideways a few times. As the train sound calmed down I had high pitched ring for a day then nothing. Thankfully my PRN valium and benadryl mix helped some(similar concoction to typical vertigo med).
So, in Jan I had a BAER (brainstem auditory evoked potential). Have you had one yet? I saw my electronic records at Mayo and it says my results were abnormal. That my waves 1 were slow and wave 3-5 were fused bilaterally. From what I can read online this usually points towards plaques at the brainstem level creating sensioneural hearing loss. Structurally my hearing is intact, but neurologically it is wearing down. I see the mayo neuro monday for full report.
Welcome to the Hearing Loss community. I am sorry you are going through so much but happy to meet you.
I wonder... Have you had a brain MRI within the last year? I see that you have had an MRI of your auditory nerves, but wondering about your brain. The BAER results point to central pathology (central auditory processing issues).
yes, I had an MRI w/contrast and a CT w/contrast within the last three months. I do have a history of nospecific hyperintense foci spots on my white matter- subcortical and periventricular. In the past this has been blamed on my migraines, yet now that I am at Mayo it has been labeled as "possible MS". I get final reports monday. I do have several other CNS issues.
This BAER happened to be one test I am unfamiliar with- and also read that it is not always likely to be related to MS but its own disease process. I am not sure I am explaining it correctly. I hope that made sense.
I have looked up both meneires and tinnitus- I feel like a combo, little of each in my mix of issues. I will relay what the doc says monday. Thanks for your answer!
Your MRI does sound consist with the possibility of MS. MS can cause central pathology of the auditory system, which would cause BAER results like yours. Other things could, as well. Auditory dysfunction in MS is extremely under-researched and poorly understood. Many MS specialists do not know enough about it. But auditory dysfunction has been repeated documented in MSers.
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