u/Forsaken-Power-1157

Hi!

I’m a 33yo mom who was very surprised to be diagnosed with significant & progressive hearing loss. no family history, no virus, no headphone usage, no injury. My hearing is just going away 🤷🏼‍♀️

Right now I’m on the border of moderate to severe, with both ears having nearly identical loss. when I say I was surprised, I mean it was like he slapped me on the face unprovoked. STUNNED. I was living in a land of delulu (my favorite Gen Z word 😂) Now that I know, it obviously explains a lot. He said, very casually, that it will just get worse forever & I may eventually qualify for implants. He said there is no predictable speed or pattern of loss. I’m wearing HAs now & finally feel use to them.

What I’m wanting to know is: for those in a similar boat, how quickly did your hearing deteriorate? How close are you to being profoundly deaf? Are you learning ASL? Did you get a cochlear implant? what’s your long term plan to cope with your loss/ diagnosis?

My 11yo has been symptomatic for 4+ years and just recently diagnosed. We’re well accustomed to symptom management, but just starting out the official journey. Our cardiologist told us some people outgrow it, I’d love to hear those stories. It feels like it’s already taken so much of her childhood 💔

We’ve been doggedly pursuing answers for my daughters health for years. It’s been a lot of heartache & perseverance. Cardiologist says dysautonomia

Here’s the series of events over 4-5 years. All symptoms were present the whole time.

⚪️High eye pressure —> optometry is stumped

⚪️Uncontrolled blood sugar —> diagnosed with both hyper & hypo glycemic. endocrine is stumped

⚪️ can’t gain weight + stomach pain + light headed —> endocrine is stumped again

⚪️debilitating week long migraines + fatigue—> neurology is stumped

⚪️ geneticist specializing in microbiology thinks it’s glycogen storage disorder or mitochondria problems —> it’s not, but during clinical exam she discovers my daughter’s heart is quite tachycardic. Refers to cardiology

⚪️ I go back to review appt notes for the past year. She was tachycardic in all of them & nobody caught it 💔😭

⚪️cardiologist says dysautonomia of some kind, possibly POTS or IST. Wants us to go to Mayo. HR even at sleep is never below 115.

It really does all fit when nothing else has thus far. Until the geneticist, nobody thought the symptoms were related to eachother, which baffled me. Because of the blood sugar problems we have already been addressing symptom management through lifestyle. Thanks to that, her bloodwork (outside of blood sugar) has been beautiful, PTL. Still miserable, exhausted, extremely heat & exercise intolerant, & migraine prone. A long road behind, a longer one ahead.

We are in central Kansas. Our cardiologist doesnt think KC has good options for dysautonomia. Anybody had luck somewhere closer/ different than Mayo?? Open to it, but in theory couldn’t a good dr closer help just as much? Or if you loved it, I’d love to know that too! I would also LOVE to hear about a functional med who specializes in dysautonomia.

Open to other resource info too. My brain will catch up soon but it hasn’t yet. It’s been a rough few months— my dad died 5 weeks after cancer diagnosis & I was diagnosed with significant hearing loss. Still, the hardest thing of all is watching your babies suffer. Thankful for the help & care 🩵