Hearing loss + Tinnitus + Musical Hallucinations - oh my!

Posted by jeindc @jeindc, Dec 2 1:41pm

Fully vaccinated at the time my spouse brought COVID home from a mandatory in-office, multi-day work team-building which involved meals, usually on the two days in-office after two years of WFH at desk alone, together. During the events, spouse was one of few masked except to eat.

Within a day at home, sick. Took paxlovid. I then tested positive 2 days later and had severe allergic reaction to paxlovid. My 10 days of positive were the usual aches, pains, fever, misery.

THEN in order of symptoms:
-rash on right thigh and ankle, horrific blisters on bottoms of heels. Went to ER - diagnosed w/ cellulitis (I knew it wasn't) - topical med. Got worse and back to ER and told not cellulitis but no name and never was lab work done.
-phlegm when eating anything (persists).
-mouth rash inside lower inside of right jaw and on inner cheek (persists).
-rash on upper back and each arm (persists)
-ingrown toenail (which may not be related except I'd not had one - fingers or toes - ever in 77 years of life!) that became infected.
-tinnitus and musical hallucinations;
-severe hearing loss.

During COVID lock down we watched lost of BritBox, Acorn, Netflix. I needed captions for accents but not for news or other. Then the tinnitus began - annoying - and then it felt like my head were in a bucket of water. ENT visit 1.5 years in and severe hearing loss. I don't now nor have I ever gone to loud concerts or play music on headphones at more than a normal sound. I'm not exposed to construction or other noise. There is no other explanation for the hearing loss.

In the 19 months since contracting COVID, I've seen more specialists for EACH thing than the total docs in my entire life. Scheduled to see an infectious disease doctor end of Dec.

I know there is no 'cure'; some say it will all lessen in time. It's not and the hearing loss and the ENT who said the phlegm was sinus issues - not - meds didn't help and I know myself! - are, with the mouth and leg rash, the worst of it all.

When does our quality of life become a concern? Hearing aids require lots of time for fitting and lots of money for good ones for those of us still working. Discouraged.

Thanks for any insights and "me toos" because it just is stunning that some of us got 'hit' with the whole deal.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

Laughing .. again. Thanks. And you're right - we must because this all is so absurd, right? Today, I made an appointment with Costco for another hearing test and fitting hearing aids. A number of friends (and Consumer Reports as I remember) said they were best on price. I'm also seeing an infectious disease specialist before the year ends to see if they have any ideas. There are now more blood and other tests to see if the virus still lives in those of us with LC. If there is, I guess I could be part of a trial but from what I've read, still no treatment.

So .. merry and happy and ho ho ho - and to me happy Hanukkah - we'll light candles and eat latkes and pray for a miracle like the oil lasting for 8 nights, treatment for COVID.

My immense gratitude to you, @covidstinks2023 !

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@jeindc

Laughing .. again. Thanks. And you're right - we must because this all is so absurd, right? Today, I made an appointment with Costco for another hearing test and fitting hearing aids. A number of friends (and Consumer Reports as I remember) said they were best on price. I'm also seeing an infectious disease specialist before the year ends to see if they have any ideas. There are now more blood and other tests to see if the virus still lives in those of us with LC. If there is, I guess I could be part of a trial but from what I've read, still no treatment.

So .. merry and happy and ho ho ho - and to me happy Hanukkah - we'll light candles and eat latkes and pray for a miracle like the oil lasting for 8 nights, treatment for COVID.

My immense gratitude to you, @covidstinks2023 !

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jeindc, Costco has great hearing aids I have been told with better prices.

I am honored beyond words to help you in any way possible. Hugs & Prayers to you...

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@dloos

My experience has been the same as others. Hearing is muffled, eyes blurry, digestion messed up. Just treating symptoms with a variety of doctors. Nobody really knows what to do for me.
I am three years into this, and I guess somewhat “resigned” to my situation, but I feel three years have been stolen from me. My life is no longer normal in any way.

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I can certainly relate - we (fiance with LC)have been to so many doctors and tried so many things….. just resigned to the sad fact it may be the normal now - close to four years / have another “ 6 month checking “ with long COVID doctor tomorrow ( via zoom ) and I have no idea what we will even talk about ! Not looking forward to it -plus I contracted COVID before Thanksgiving and unwittingly passed it on to him - so this only put him back - I’m sorry for your frustration and dismay

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