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Endolymphatic Hydrops

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I have been diagnosed with endolymphatic hydrops and prescribed medication for three months for this and then will return to the consultant. I’ve had eye movement, hearing, balance tests, pressure tests and an . Has anyone had this condition? The metallic sound from my hearing aids (Phonak Sphere) as the brain is getting used to my hearing aids, together with the ear pressure is making life very difficult and causing me a great deal of stress. I don’t have vertigo but do feel lightheaded. To add to this joy, I also have TMJ disorder which isn’t helping the ear pressure and for which I will have separate treatment. Any comments are very welcome.

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Wow, I’m so sorry you’re experiencing this disorder! I’ve never read about endolymphatic hydrops until I looked it up because your post made me curious. It sounds frustrating at the very least. I hope your recovery is swift and complete!

Thank you for your reply and good wishes. It’s frustrating and exhausting and I’m now very reluctant to go outside unless I have to as the balance issues with this make me nervous about falling. Thanks again and hope that you are doing OK.

@Judi_L : If you don’t already use one, a cane or walker can help reduce the probability of falling while you’re battling this affliction. Indoors, many people just grab the furniture, doorframes, and walls. I don’t like having to change my route just because I need a cane, or straighten the pictures on the walls in the hallway after I bounce off them, so I use my cane indoors and out. Spinal stenosis did a number on the nerve roots for my right leg and foot, so better safe than sorry!

Thanks for your well-wishes to me, too. :grinning:

Hi. Yes, I have this and experience all the things you’re talking about. you should message me and we should talk. I can’t promise I’ll be of much help but at least we can chat about it together. You’ve probably realised already that it’s a rare condition with a lot of variables and not much is really known about it other than some of what it does to people. i can tell you some of the things that have helped me to manage it somewhat.

Hi, Thank you for your reply and I’m sorry to hear that you also have this. It would be really good to chat and see how you manage this condition - how do I get in touch with you?

In reply to @AttilaDaPun

Hi, Yes I’ve thought about a cane or a walker, except that I don’t want to be dependent on it. I’m so sorry to hear about the spinal stenosism - a rotten thing to happen. I’m OK at home and tread very carefully when I am out. I agree about not having to change your route because of the cane, and using the cane to straighten the pictures is perfect.

Take care,

Judi

Actually, I use the cane to avoid needing to straighten the pictures - sorry I wasn’t more clear about that! I do admit to using the handle to lift bags of groceries off the floor, while I steady myself against the counter.

Canes and walkers are often for temporary use. It’s variable upon the person using the device and what reason they’re using it. If a condition is temporary, so can the mobility aid be. And of course, a person can choose not to use one, as they see fit, if it’s not a matter of dispute with one’s physician.

I was glad to graduate back to the cane after using a walker following my lumbar spine reconstruction. If I’d refused the walker, my surgeon would have had some choice words! :grinning:

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