Going on 3 Years — Tinnitus Worse as Ever with Added Symptoms

This June, it will be 3 years since my ear issues started. I feel like I'm not any closer to finding the cause of my issues even after many visits to multiple ENTs, neurologists and audiologists. It all started one morning when I woke up with ear fullness and numbness on the left side of my face. I had a severe cold/flu during this period. The cold/flu went away but the fullness persisted for several weeks. By the time my ENT appointment came up, it had already started improving, ENT said it was labyrinthitis (even I had no vertigo or dizziness) The fullness went away and my hearing was back but I was left with tinnitus and hyperacusis. Had multiple hearing tests which all came back normal. Even though my hearing was back in my affected ear, I could distinctively hear differences in tone and frequency between my left and right ear.

Fast forward a year after this and the tinnitus moved to my head. I could no longer distinguish the screeching noise from my affected ear. The tinnitus was everywhere. This is also when I began having episodes of severe tinnitus that included headache and difficulty concentrating and brain fog. It usually lasted a day and it was back to my normal baseline. This would happen maybe once every couple of weeks.

Fast forward two years after the onset of tinnitus and these episodes of severe tinnitus that engulfed my head became more in frequency. I would have them weekly and they would last a couple of days. This is also when I began experiencing this drunk unsteadiness feeling and like I was on a boat. Visual movements in my peripheral visual caused this strange sensation. Walking in warehouses that had tall shelving felt like the shelves were collapsing on top of me.

Fast forward to present. These "episodes" are now almost constant. I may have one or two "good" days where I'm not feeling like this. In addition to these symptoms, my memory has suffered as well. I had two cases where I couldn't remember my own cell phone number, names of coworkers and important future dates. My perception of time has also been affected. Long periods of time seem short to me. For example if there's an event one month from now, It seems like the date approaches in a week even though a month has passed. I've also developed sleep problems on top of it.

My recent diagnosis from my neurologist was migraines. I was on betablockers and it seemed to lessen these episodes for a while but it seems like the effects of the drug wore off and I was only left with the side-effects so I stopped. I have another appointment in a few weeks so I'll see what he says.

There are distinctively two stages when it comes to my symptoms. My "normal" stage where I have virtually none of the debilitating symptoms. The only symptom I have is a faint hissing in my affected ear. No brain fog, no difficulty concentrating, no visual disturbances, no hyperacusis etc.

The "episode" stage is when all the symptoms begin and it does NOT come on gradually. If I'm awake, I feel this jolt of electricity type of feeling in my head that comes with fleeting tinnitus which physically shakes me. The best way I can describe this is zapping my brain with a cattle prod. As soon as this happens, my head becomes engulfed with severe tinnitus that I can actually "feel" if that makes any sense. It includes this dull headache where it feels like the pain is moving around in my head. After a few hours, the brain fog, fatigue, unsteadiness, drunk feeling, lack of interest, anxiety, depression, feeling of impending doom set in. I can't concentrate on anything, even checking my email on my phone is a difficult task. All I want to do is lay back in my chair and have my eyes roll back. While I'm having these episodes, I get insomnia. I just don't feel tired. Eventually I fall asleep and wake up like I haven't slept at all. The symptoms are all there upon waking up. After 3 or 4 days, just like it started, it stops. The headache is gone, Tinnitus back to "normal", crystal clear thinking, anxiety, depression feelings completely gone. I have this awesome euphoric feeling like I've just been through a battle and came out alive. This can last one day to a couple of weeks before the same cycle continues.

I believe whatever damaged my inner ear is causing neurological episodes of abnormal brain activity which is causing all of these symptoms to come and go. I have not found a trigger yet. In fact, I believe there is no external trigger for me. I have tested periods of "good" days by drinking coffee, drinking alcohol, eating sugar, carbs, salt and nothing changes. During these episodes, I have tried fasting, drinking lots of fluids, cutting salt, coffee, alcohol etc to no avail. Besides the hearing tests and extensive inner ear function tests, I've had a head MRI and all came back clear.

Sorry for the long post but I want to see if anyone has suggestions or experiences similar symptoms. This has completely changed my life and I'm worried about my future employment and ability to support and provide for my family.

 

I'm really sorry you're going through this much suffering. Has Meniere's been ruled out?

 

Thanks for the kind words. I think so. Between the MRI and no fluctuating hearing loss, no aural fullness besides the initial condition three years ago and no vertigo. Maybe it’s some rare form of Meniere’s? By the way I get the shocking feeling in my head and bilateral tinnitus with no emphasis on the affected ear rules it out for me. I believe it’s a neurological problem more closely related to epilepsy/migraines.

 

Have you looked into Lyme or been tested for it? The numbness and memory stuff could definitely be part of that. I would be tested for it using a reputable lab (IGeneX in California is gold standard).