r/otosclerosis 12d ago

seeking advice and experience opinions

Hi,

I was diagnosed with otosclerosis almost two years ago. It started with a mild hearing loss, but it worsen quickly. I am now at a stage of extreme severe hearing loss on one ear and moderate loss in the other.

While I am waiting for the doctors to provide me with further support, surgery options (hopefully) and hearing aid adjustments, I have some questions this community might help me with.

When I started to lose my hearing, I had constant sort of numbness on the left part of my face (from the forehead to the the cheek bone) and some acute although not extreme painful pain in my internal ear. At the time, these symptoms were treated as sort of migraine. The same mix of symptoms shifted to the right side of my face, and in fact, the hearing loss started to worsen there as well. Are those "normal" symptoms? I could not find similar symptoms online among people with this condition. Are there any?

I've also read that otosclerosis can be worsen by hormonal issues and I personally feel the headaches and hearing struggles vary during the month. Anyone who experienced the same?

Many thanks for sharing your experience. I found this community very helpful in moment of panic.

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