I have been dealing with major dizziness and balance issues with increased tinnitus and hearing difficulties in my left ear for 18 months now. And so far, doctors have proved not helpful at all. Sorry that this is a rather long rant!
About 4 years ago, my audiologist's nurse practitioner noticed that I had some increased hearing loss in my left ear. She mentioned that it might be caused by an acoustic neuroma, and suggested an MRI with contrast. I declined at the time. I have had major hearing loss and tinnitus for 50 years now, so I didn't take it very seriously. And I wasn't thrilled about taking the gadolinium contrast. My mistake!
Starting in January of last year, I suddenly couldn't do any activities that involved moving my head around for more than an hour or so without becoming very dizzy and nauseous and exhausted for the rest of the day. That lasted 3 months before slowly fading away, but it left me with chronic fatigue since then. Can't do even light activities for more than 3 hours a day (with lots of breaks), sometimes much less. I continue to have intermittent flare-ups of dizziness or vertigo. The tinnitus in my left ear has becume worse, and I have much more difficulty understanding speech on my left side. The pandemic started just as I wanted to finally see a doctor about it, which put me off again for a while as I was at high risk.
Finally went back in June to get my hearing tested (nurse practitioner was no longer in that practice). It was such a struggle to hear the sounds during the test, especially through the tinnitus noise. My brain was really exhausted when we finished. When the technician spoke to me through the speakers at the end, I found her voice extremely painful. She said that was very abnormal, and she wanted me to see an ENT while I was there.
Ugh! He nearly stormed into the room, and told me that my painful hearing was just an emotional reaction. (Say what?!?) When I explained that I was dealing with chronic dizziness with increased tinnitus and difficulty understanding speech, he waved my last 3 years of hearing tests in my face and said that my hearing is stable and please stop coming in so often! He didn't examine me in any way and told me I needed to see a neurologist, as I wasn't dealing with any inner ear problem. (He totally ignored that fact that I had lost 16% of speech perception in my left ear since the previous year.)
It took 6 months to see the neurologist. She barely examined me at all, and said it wasn't a central nervous system problem and I needed to back to see an ENT. I was not thrilled with the idea, and just kept on coping the best I could. I finally talked with my family doctor again last month and we decided I should try vestibular therapy PT.
So I've been doing that for the last month. My physical therapist did more balance tests with me than any of my doctors. If we put my feet together, cross my arms over my chest, and close my eyes - I fall over instantly. At first suspected possible BPPV, but the usual maneuvers haven't helped at all. Noticed nystagmus when I turn my head to the left. Says it looks like I may have more than one source of my dizziness, but my inner ear is likely one. She also commented how bad my hearing was on the left side.
But 3 days ago, I suddenly developed 24/7 nonstop dizziness - so bad that I can't drive, climb a ladder, or do any activities that involved moving my head around. I feel sick all the time. Had another brief episode of extreme hearing sensitivity to a normal sound. Can't even watch my fish swimming around in my little pond. Can't hold long conversations, as my brain gets exhausted very quickly. So, I finally absolutely need to follow up on this!
I'm going to ask my family doctor to refer me to Duke ENT specialists in North Carolina, about 3 hours away. We have no good specialists nearby. But it will take at least a month to get in there, if she approves. Meanwhile, it would take 3 weeks to see a different local ENT. I'm hoping that my PC can try to get me in sooner.
Question: I hate taking the gadolinium contrast, with its potential health issues, but I realize that it may be necessary for this. I just want to really minimize how often I have to take it. Should I wait to have an MRI done through Duke, or is it OK to have it done locally by a regular center that doesn't specialize in potential AN issues? I don't want to have to have it redone if it's not done right the first time.
Also, any suggestions on how to cope with such severe nonstop dizziness?
Thanks!
