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Blocked ears with Endolymphatic Hydrops

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Hello, I have ear pressure in both ears, and have been diagnosed with Endolymphatic Hydrops, which is driving me beyond reason and causing severe stress/anxiety. I have moderate hearing loss and have Phonak Spheres which I have been using for a long time. With these aids there is a constant echoing and there has not been any improvement after numerous tweaks. One audiologist tells me that each time the aids are adjusted, then the brain has to get used to them all over again. Another audiologist has said that it is because of the hydrops which is causing the echoing/hollow sound as if I at the bottom of the sea. As Phonaks are quite aggressively pushed where I go for audiology checks, I am beginning to wonder if the hydrops issue is ignored in favour of potential sales for Phonak hearing aids. I have had medication for hydrops which hasn’t worked and I’m having doubts and losing trust with this company. I am based in London.

Any thoughts?

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Have you seen a neurotologist or otologist for this condition? I don’t know a whole lot about this condition, but can relate to the blocked ears having dealt with Eustachian Tube Dysfunction and chronic otitis media for most of my life. Steroids were the only thing that gave/give me relief. I am currently dealing with a sudden hearing loss now but one thing that my neurotologist suggested was for me to consider being on a low dose steroid indefinitely. You might also consider steroid injections. Maybe if you can see a specialist and get your ear issue to settle down, the hearing aid might be more effective. Wishing you the best! I

Yes, I’ve been seeing an consultant who has diagnosed endolymphatic hydrops. He started me on betahistine tablets which haven’t worked.

I’m sorry to hear about the sudden hearing loss - are you having treatment for this? If so I hope that it is working.

All the very best

@Judi_L said:

which is driving me beyond reason and causing severe stress/anxiety

You might want to see someone about that.

Hydrops can absolutely cause some really weird echoy, distorted auditory perception and there’s nothing the hearing aid can really do about that. Mostly you have to try to program around it. It’s hard, for sure. Depending on word recognition, menieres/hydrops patients can become cochlear implant candidates at higher pure tone threshold levels than people might expect. It sounds like you probably aren’t at that point, though.

Absolutely it is going to be frustrating at times, but “driving me beyond reason” sounds like it might need some extra support from a mental health professional. We all need a bit of extra support sometimes. Anxiety medications can also be used as a temporary tool to get you out of a bad spot. I mean this with all compassion and hope that it is taken that way. Don’t ever wait to be kind to yourself and to take care of yourself, even in the face of cultural stigma against these sorts of professional supports. What you are experiencing IS unusually hard.

And if you haven’t really dug into the app, you might want to try to have a look at it. When you are struggling with weird and unpredictable auditory fluctuations it can be valuable to be able to make on-the-fly adjustments in volume and tone. Find the equalizer. With hydrops it is often the lower frequencies that get really bizarre and dropping those out will limit your hearing, yes, but might also limit the frustrating weirdness on bad days.

In reply to @phillygal

Yes, I am currently seeing an consultant who for the last six months has put me on Betahistine 3 x 16 tabs per day. They haven’t worked. Eustachian Tube Dysfunction has been ruled out. I won’t be seeing the ENT consultant for a few more weeks, so will see what he has to say although I’m not too keen on steroids. Thank you for your good wishes.

Hello Neville, Thank you for your post and for such sensitive advice. When I could see no improvement with tweaks etc, I wondered if the hydrops was at the bottom of this and what you say, makes perfect sense. I think that you’re right in that this will have to be programmed around. I’m not at the point where a cochlear implant might be an option, but at the moment I am deciding whether or not to continue with auditory processing training. I’m not really into counselling though. so perhaps I need to rethink. And yes, it is ‘unusually hard’. I kept hearing from my audiologist that the brain needs time to adjust etc but I think that the problem is more to do with the hydrops than anything else. Will have a go at the equaliser to see if that makes any difference.

Thank you again for such a thoughtful post.

Edited

I have eustachian tube dysfunction from birth–hence, the cholesteotoma that followed. I’ve used traditional aids for decades, but some years ago Kaiser approved me for a Bone Anchored Hearing Device, precisely because BTEs cant compensate for ET dysfunction. this style of aid uses vibrations from sound to connect directly through the mastoid bone with a functioning cochlear nerve, hence bypassing the drum, middle and inner ear. And my eustachian tubes! I chose the Osia by Cochlear and it’s a marvel! I don’t know if this sort of would work for you, but you might ask your and audi about this option. These are significantly easier to install than a cochlear implant. But the latter address a whole different set of conditions.

I still use my BTE aids for playing music. And, the still allows for normal hearing through the ears. It’s not either/or. Actually I can use both BTEs and the Osia at the same time, with the Osia turned down a bit.

The Osia delivers more volume than my BTE’s. Especially in the voice range.

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