7 years no diagnosis would welcome thoughts

Hello all. New to the forum! I find when I talk to anyone, including my doctors, about my symptoms, everyone thinks I'm crazy. Reading through some of your posts makes me feel like maybe I've found a home!

I have a 7 year history of symptoms. For 7 years I've had right ear pressure, fullness, muffledness, progressive high frequency hearing loss, tinnitus, hyperacusis and pain in and around my ear and my neck. My hearing losses have all been sudden losses of ~20db or so that mostly did not respond to steroids. Started at 8k and has progressed down to 3k. My 250-2k hearing is still normal. I do not have vertigo, but some general lightheadedness and dizziness if getting up too quickly. These symptoms are basically continuous on a daily basis, I rarely have a good day.

Up until this year, the only issue I've had with my left ear was some mild hearing loss at 6k and 8k. However, this year I now have similar symptoms to my right ear minus the hyperacusis. I've had 2 sudden hearing loss episodes at 4k and 3k. Today the pain and pressure in my left ear is awful. Interestingly, on any given day I will have symptoms on one side or the other....not both. My right ear feels ok today.

I have been to 5 ENTs including the university specialists, neurology, physical therapy x4, chiropractor x4, and acupuncture. I've had allergy testing (some mild allergies) and just did sleep apnea (severe). I've been evaluated for TMJ and given muscle relaxers.

My current ENT says I don't fit in any "box". We've discussed Menieres but ruled out bc of lack of low frequency loss and vertigo. Cochlear Hydrops but again I don't have low frequency loss. AIED, however he says that generally occurs in a matter of weeks and months not 7 years. His current recommendation is treat the sleep apnea, low sodium diet, continue on allergy meds, and treat hearing losses with Prednisone and hope it saves my hearing.

As I can tell from the threads, you all understand how debilitating these conditions can be on just trying to get through a day. I'd love to hear any thoughts on what I might be dealing with and what others have done to feel better. I've tried to summarize above but please ask any questions!

Thanks!
Mike

 

Thanks Donamo. Unfortunately I woke up this morning and the hearing loss is back in my left ear again. 4th time in the last 2 weeks, happened overnight. Very frustrating!
I've used my fitnesspal to track my eating for a couple years now. I also tried keto for about 6 weeks but stopped as I didn't feel like it was making a difference. To be fair though, while my net carbs were always under 30, it was more "dirty" keto eating some processed keto foods like tortillas and protein bars. I've tracked my symptoms on a weekly basis all this year as well. So far I haven't found any connections. It's been extremely frustrating.

I was thinking last night if I need to take a more extreme approach to my diet. Thinking carnivore and no processed food. I would think that is the best elimination diet and it may show if diet is involved at all.

My ENT did draw blood at my last visit to run a bunch of tests for autoimmune (lupus, Lyme etc) and other issues. We'll see if that shows anything new.

I forgot to list above that I've also started with a functional med Dr. We've done GI and mycotoxin tests that have showed issues with various things (high mercury and lead, some mold toxins). I just don't know how serious to take those findings, I am on various supplements to treat those things.

 

To be really honest with this group, as much as the pain/pressure/tinnitus suck, I could live with it IF my hearing was ok. I'm only 50, I worry all day everyday about what's going to happen. At my current loss rate I assume I'll be in hearing aids in the next few years, which I've come to grips with. But if it continues to progress like this I will be deaf in the next 15 years. The fear of the unknown is just crippling. Would love to hear how you all handle this on a daily basis. It makes me miserable, irritable, and short tempered. I don't like how I feel but I can't seem to get over it. As I tell my wife, you use your hearing 24x7 so it's a constant reminder of the problem!

 

Thanks Donamo. Unfortunately I'm an Android user, so that may be something else I have to change . I don't think the Samsung buds offer the hearing enhancement which is what I assume you are referring to with the air pods? Interesting that you find those work better than expensive hearing aids? I've been doing some research and considering the OTC Sony CRE C20s to try.....or going to see a professional.....thoughts?

I've been watching my diet and exercise for the past couple years. I feel like I do ok, but I can always look to improve. If I could find something that fixes this I would 100% commit to it!

Are you saying after going keto your hearing actually recovered some what? Are you willing to share more details about where you are at and how much it recovered? As I mentioned above, I'm still normal hearing 250-2k, then sloping down from around 30db at 3k to 55/60db at 8k. I recognize that many might think that's great and I understand that, however, the fact that I keep dropping 20db a year in progressive order at my age is frightening.

 

Thanks. When you went keto what other improvements did you notice? Any relief of pressure, tinnitus, earaches, sound sensitivity? It's certainly possible that keto could protect the hearing I have left, however, since it didn't relieve my other symptoms I just assumed it wasn't working. Tough to know, i'd probably have to keep it up 6-12 months to see if I have a another sudden hearing loss to know? One interesting experience was when I actually came off keto a few weeks ago I thought some of my symptoms were improving....until the sudden hearing loss!