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Hearing loss + Tinnitus + Musical Hallucinations - oh my!
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.
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I’m so sorry for your suffering, it’s very frightening and frustrating to go through so much and not get any definitive answers for all of it. I don’t think you could have done anything better than what you’ve already done, I’ve read so many horror stories from people who’ve been through hell because of covid and then they want us to believe that’s just another virus, no big deal. I think we’re living in denial if this is what they think, I’m still shocked when I got to busy places or medical offices and clinics and no one is wearing masks, I still wear a mask when I’m around people, covid changed my life in many ways and I don’t want another episode of this unknown disease, until they get better information about it I suggest we continue to live defensively, I sincerely hope you will start to see some progress soon and don’t give up hope.
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1 ReactionThank you, @frouke - here is one of the few places others understand and empathize and sympathize. People say things like "you must not have been vaccinated" or "I got COVID and I'm fine." There is no understanding or even great care.
The long COVID "specialist" I saw was a crock. Affiliated w/ a major medical center, he wanted to know why I wanted to know if it were long COVID! I said "peace of mind" so I'm not chasing something and should be looking at other things like, oh I don't know, a brain tumor!
The tinnitus and hearing loss are a huge impediment to life. Going to try to get hearing aids soon tho' it's holidays and difficult to get anywhere!
Thank you for kindness. If we all went on strike maybe we'd be noticed.
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2 ReactionsMy 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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1 ReactionJeindc,
I' so sorry for everything you are going through! That sounds terrible! It must be very hard on you.
What you need to do now is pray and pray hard! It looks like all you've got left is God. But that's all any of us have anyway. God is there for you and will heal you. Just tell him everything that's going on and how you want it resolved. After all, God made you and he can fix you! It states in the Bible to ask and it shall be given to you.
I will say a prayer for you.
PML
jeindc, Bless you and praying for you to get better.
My tinnitus worsened after my 2nd round of COVID and I got hearing Aids last year and even though they are an adjustment, it's worth it.
My right ear has a high pitched sound and the left ear sounds like Morse code!! The hearing aids tune out 90% of this.
I had the thick mucus in the back of my throat for 2 years with slimy saliva. It has finally gotten better. I take Children's Zyrtec liquid 2.5 ml at night (I'm sensitive to so many meds) and this has helped. I went to 4 doctors about this mucus and none of them knew what it was. I had to scrape my tongue every morning to get the slime off and I keep my mouth extremely clean. I rarely get choked on this at night anymore....., nothing like the onset.
I also was put on NAC 100 mg (over the counter...I only can tolerate 25 mg) for this and it helped tremendously. I have long COVID and the children's Zyrtec and the NAC were prescribed for Long COVID by a Integrative Medicine Doctor.....I do think they have helped. You have to be so careful with antihistamines as they can be TOO drying. I did the IV infusions for Long COVID but I couldn't tolerate them. Please ask your doctor about these before trying.
I believe COVID attacks greatly where you are already weak. I already had immune system issues, sinus issues, allergies, prone to bronchitis, acid reflux, tinnitus/hearing loss, joint pain and fatigue from Fibromyalgia/FMS....all of these worsened with COVID. I still have to take at least one nap a day to function. I was taking at least 4 a day right after my first bout of COVID. I had to get my heart checked due to my heart rate staying at 136 lying down. My heart was fine and the heart rate in 3 months came back down to normal. I still battle brain fog from COVID...it is better though and I am grateful.
Praying you get better. I empathize with all of you. COVID after affects can be most brutal. Blessings & Prayers to all....
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1 Reaction@dloos this has "only" been 20 months for me and worsening symptoms what seems like daily. How you've managed for 3 years is beyond me. I am so frustrated as I read more and realize the newer symptoms are no doubt still long covid symptoms, I become more and more discouraged. I have, not til the end of Dec., an infectious disease doc appt.. Do I expect answers? No. Sympathy? A little would be nice. I have to make an appt. for hearing aids to I can at least have conversations. Two of my docs agreed I should be a med for nerve/muscular pain and I am and it's not doing anything.
And what's sad is that the docs we see now don't - at least in my case since my 27 year PCP retired just before COVID - know me from 'before' - my energy, my abilities, my joy. Yes, our lives have been stolen and none of this is normal.
THIS is the one place I feel safe saying anything. Friends and family get tired of hearing me and now, my having to ask them to repeat so I can hear.
To us - to one day of nice and the former normal.
Yes, it is very hard. Each day I set out to hold onto my sanity, and participate in life as much as I can.
It’s hard to resist isolating because interacting with others is so difficult with these issues. I have muffled hearing, tinnitus and hyperacusis. The combination of symptoms makes talking, and listening a terrific challenge.
Christmas is upon us, and what was my favorite time of year is now just something I have to get through.
I pray something will come along to give some relief. I gave up on a true healing a long time ago.
Good luck and best wishes to you.
I'd give just a hug and I know it's not enough. Find something that will give you a bit of the old pleasures for the holiday. Only others with LC understand what we are going through. My best wishes to you too .. for something that will bring joy.
Oh @covidstinks2023 (your 'handle' alone makes me laugh in empathy and sympathy) thank you. I have felt so alone with my symptoms which are rarely mentioned in any research. It began with a rash in my mouth - "rash" being not exactly the word - "bumpy things"?? - on the right side - upper inside cheek, lower jaw - and the rash on my right leg and the peeling heel bottoms (all of which persist) and then on and on. The hearing loss prob happened slowly and I wasn't paying attention. SO much of my life is wearing airpods or headphones for Zoom meetings.
Your suggestions are great and I will share them with the "million" docs I'm seeing and the new one for infectious diseases later this month.
If you're willing to say more here about the hearing aids helping the tinnitus, I"d be grateful. The ENT I saw said aids would not help. My sounds are not consistent - one is more than the others but not like yours. The musical hallucinations (which makes me feel nuts when I mention it) are what my mom had as her hearing loss became more pronounced. Evidently one's brain looks for spaces to fill. (Yesterday and today, at about the same time, "Anything Goes" which is a nice change from the usual just noise. DID that sound nuts?!)
@covidstinks2023 I appreciate your sharing so much.
JE
Mayo - thank you for a place to learn that each of us is not alone. THIS has been far worse than my non-hodgkin lymphoma and radiation. At least there was help.
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1 ReactionJEINDC, You unload all you want and don't feel guilty. God puts us here to help each other. People on here are very compassionate. It helps to know someone battles the same thing you do and understands your hearing and noise issues.
My left ear makes a morse code sound....a secret message from another country? LOL. You gotta laugh or you would cry, right? The right ear is a high pitched sound. I will say that caffeine and too much sodium tend to worsen the tinnitus. My hearing was declining greatly with my right ear being the worst.
I have had hearing aids for about a year. I can hear so much better and the tinnitus is 90% better. I have the Oticon ones that go behind the ear with a tiny wire that connects to what goes inside your ear. Hearing aids have come a long way.
I'm not sure if you need a referral to see an audiologist, but, I would go and get an evaluation and a baseline on your hearing. A good Audiologist is so encouraging.
I am praying much for you right now for help. I believe its going to get better for you and there is someone who can help with this. Merry Christmas to you & yours. Hugs & Prayers....YES, Covidstinks!
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