Hearing distortion in right ear, comes and goes, no help from ENTs. HELP!
About 10 years ago I had fullness in my right ear and was bit obsessed with finding an answer. I was able to hear my footsteps like a my ear drum was beating to the impact and I could hear my heartbeat. After seeing my primary and several ENTs, the last ditch effort was an ear tube. It made things worse for about a week, then it was back to that fullness. A year later I went in to get the tube checked. It was still there and that ENT took it out. A week later, that's when my hearing distortion episodes started.
Each episode is typically unique as to what happens when so I consistently sound insane every time I describe it. At first, my episodes were endless and I had no idea what to expect. I did originally get vertigo so the ENT diagnosed me with meniere's immediately. I went 6 years before another ENT said that was misdiagnosed.
It's been the pattern for the past 3 years that I go 6 months without any distortion, usually between February, March to August, September. When they start back up, I might get a day or so of good hearing before it comes back.
These are my symptoms and where I'm at a complete loss and really need some help. I'm going into full detail because doctors can't figure it out and they don't seem to take me seriously. I have constant tinnitus but it changes. I have my low pitch "good" tinnitus when my hearing is correct. That's my indicator of when episodes are coming on. When it wavers and goes away, I feel more fullness coming on and I'm guaranteed an episode. That tinnitus is replaced with a very faint and extremely high pitched tone accompanied by fullness that intensifies and dissipates throughout my episode. It almost sounds like I have my ear next to a tube TV playing static and feels heavy as if it's actually there. At the beginning of my episode, I can hear but it's very distorted. I have 2 pitches I hear in my right ear. It's every sound and most aggressively with my own voice, which is absolute torture. About midway and towards the hopeful end of my episode, the fullness and that static sound gets so aggressive that I can barely hear anything. The good news is that I can't hear well enough to hear the distortion unless it's loud enough, bad news is that when sounds are loud enough, it's painful and sounds like a broken speaker giving me a headache pain relievers don't help. I also get symptoms towards days 5 and 6 or my episodes of the beginning of a cold that will go away typically within a day.
This type of episode usually lasts a week or so and I know it sounds like I have it figured out but it doesn't always happen this way. I would hope for this pattern but if it doesn't follow it, I can't predict what will happen or how long it'll last. I do know when my hearing is about to come back to normal when my good tinnitus comes back.
There really doesn't seem to be any rhyme or reason to it but I have hunches that are continuously ignored by doctors. I have my theories about allergies, barometric pressure, and stress. A pinched vagus nerve was also a thought. I've looked at other threads and found some potential with acoustic neuroma. I have begged for a scan but I haven't had one does since these episodes started coming on. I've also asked about hearing aids but no conversation has come out of that. It's been an actual nightmare trying to get this figured out. I am at my wit's end and hoping I'm not completely alone.