Menieres, ETD, or Both?

I recently came across your board. I am grateful to all who are sharing their knowledge and experience here. I am trying to make sense of an ongoing problem with my ear and hope I might find some help here.

I am trying to determine if Meniere’s is part of what I have.

An ENT recently told me she thinks I have Meniere’s and Migraines. The previous ENT thought I had Eustachian Tube Dysfunction (ETD) and Fluctuating Hearing Loss. I find that when I read about ETD it makes more sense with my experience because I have difficulty with altitude changes and because all my ear problems seem to stem from the stuffed ear. However, the current ENT points out that ETD does not explain my hearing loss (which fluctuates between mild-moderate and moderate). Nor does ETD explain the occasional vertigo/dizziness/nausea, however I am starting to think the migraines explain that—exacerbated by eyestrain as I am in my late 40s and having increasing presbyopia (difficulty reading things close up).

My primary question is:

Is the fullness of the ear feeling and experience different for people with Meniere’s than it is for people with ETD? I am so attuned to how stuffed my ear feels, what makes it more stuffed, and if/how I can clear it--I'm guessing that understanding any differences in those experiences for people with Menieres and with ETD would help me understand if I have one or both of those conditions. I haven't been able to find the answer to that question.


Below is more detail about my situation for anyone who cares to read and might notice some pattern, and also as an introduction. At the end I list treatments that have helped me.

Trying to make an extremely long story short...

My left ear got stuffed after a cold in mid-December of 2011 and didn’t clear for weeks. In January loud, alarm-like tinnitus started. Now my tinnitus is usually more of a white noise—though it changes often. I don’t believe these changes are random.

In the summer of 2012, a visit to an audiologist showed that I had only very mild hearing loss in the affected ear. Last summer and fall’s (2013) tests showed it fluctuating between mild-moderate and moderate.

I had a vertigo spell at the end of December 2011. I have had them on and off since. They usually last between maybe 30 and 90 minutes. I recently learned the Epley Maneuver. That stops the vertigo (spinning), but not the dizziness and nausea.

Altitude changes, really seem to get my ear clogged, which sets everything off. I was almost better in the spring of 2012 but then made a plane trip across the country. I think my tinnitus has not stopped since then. I believe the combo of altitude, noise on the plane, seasonal allergies, and possibly the stress of the whole experience all contributed. I have had other recurrences after altitude changes, even just driving in hills above 500 ft. So I avoid altitude change, which is extremely limiting.

I have had allergies and mild asthma (hay fever, mold) all my life and multiple chemical sensitivity since young adulthood.

I notice that when my left ear clears there is post-nasal drip on that side.

I went off gluten and cow dairy early in all this and believe those things helped. My diet is already low salt. I notice that when I eat things with sugar my ear stuffs up. That has gotten much worse lately, which is really disappointing, because I don’t have a lot of desserts, but I like a little, and now even a little cause problems.

I had an MRI done to rule out a tumor. All looked normal.

My dizziness seems to be aggravated by eyestrain. I’m in my late 40s and getting presbyopia. I have new glasses and hope that will help, though I am having to make the transition slowly.

My ear is more stuffed when my jaw is tight/sore.

My stuffed ear is aggravated by noise, and I often find noise uncomfortable.


Things I have tried that I believe have helped: dietary changes, breathing steam, hot compresses, avoiding sleeping on affected side, sudafed (though I stopped that because it made my heart race), nettle, quercetin, clear-ease enzymes, classical homeopathy (only thing that really shifts my tinnitus), shoulder and jaw massage, bite plate, avoiding allergens/chemicals I’m sensitive to, avoiding altitude, ear plugs that slow pressure change (strongly prefer Alpine FlyFit over EarPlanes), caffeinated tea in moderation, staying well hydrated, saline nasal spray, a course of antibiotics (though I suspect an inactive ingredient), acupressure wrist band, Epley maneuver.

 

Thank you very much for your response, June. I somehow had not come across the term "cochlear hydrops" before. I just looked it up, and see that it is definitely something good for me to know about. It is great to hear your hopeful story.

I had started to suspect that I might have both Menieres (or now perhaps cochlear hydrops) and ETD, along with the migraines. The new ENT does think that's possible.

I'm fortunate that I don't get pain on descent from altitude. What happens for me is that my ear clogs up and is more difficult, if not impossible, to clear for a day or two afterwards, or more. This can occur simply from a drop of about 500 ft in a car. The pressure-slowing ear plugs help.

I will definitely keep reading!

 

Thank you, Baloo. That is so kind of you to register so you could post here. I just went and looked and certainly am glad to know about perilymph fistula. All this info is confusing, but I think I am moving forward, and that is a good thing. Good wishes to you.