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Has anyone had severe nonstop ringing in ears after COVID?
I’m posting on behalf of someone very close to me, Maurice, who has been dealing with severe and persistent health problems following COVID.
His condition has significantly affected his quality of life, and despite seeing multiple doctors, specialists, undergoing extensive testing, and trying different approaches, we still have not been able to find an effective treatment or a clear explanation for why his symptoms have continued.
Some of his symptoms are extremely intense and persistent, particularly neurological and balance-related symptoms, along with other physical symptoms that began or became significantly worse after COVID. At times, the severity has been overwhelming and has made normal daily life very difficult.
We are now trying to connect with other people who may have experienced a similar post-COVID condition.
Has anyone here experienced severe, persistent neurological or vestibular symptoms after COVID that lasted for years? If so, were you eventually able to identify what was causing them or find a treatment that significantly improved your symptoms?
We would especially appreciate hearing about specialists, Long COVID programs, testing, medications, or other treatments that genuinely helped you.
Even if your symptoms were not exactly the same, I would be very grateful to hear about your experience and what finally made a difference for you.
Thank you so much to anyone willing to share.
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@suefish if this is true then why hasn’t it been announced and other doctors know about this?? American Tinnitus Association knows nothing about this and should. I’ve been in contact with someone and she knows nothing. They’ve had Webinars with doctors all over the world and know nothing. Research is on going but no cure. I would love it. How many people has he “cured” ?
@gnana6
I have no idea.
@suefish what is that doctors solution??
I don’t know what you mean.
@suefish The doctor that wrote the book with solution to tinnitus
There is more research showing how COVID "attacked" our neural networks in so many ways. If you or Maurice have not, set a google alert for "Long COVID" - some of the medical journal papers are tough to read tho' you can usually get through them to learn enough to decide what specialists to see.
Specialists: I've not a miserable time for 3.5 years. Because of the google alerts I'm learning more than most doctors know. Even in my major US location, there are no more COVID clinics.
-I contracted COVID in late March/early April 2023. First symptoms were edema in both legs, a rash on my right inner ankle and right inner thigh and oddly, an ingrown toenail on right big toe... something I'd never had - and blisters on the bottoms of my feet. (Recurring both big toes infected by ingrown nails but not diagnosed as "Covid toes." It may be the infection feeding the activated lipolymphedema but no idea what to do except the specific massages to try to get lymph fluid flowing and adipose tissue not expanding. (There are surgeries - expensive, risky, and no guarantees the lipedema part ("lipo" of lipolymphedema) will not return. Ah DNA!)
-Nine months later came musical tinnitus which I still have. It preceded significant hearing loss. I was seen by an ENT who wasn't much help even tho' they did a badly done hearing test. I went to COSTCO to have the hearing test redone (free if you join COSTCO - worth the price of joining) and got hearing aids. I'd read that they would help me hear the musical tinnitus less. They have NOT. On many days I want to scream from all the noise in my head. I have some regular tinnitus but it's mostly musical .. which is fascinating. (Glad to tell more if interested.)
-I had mild urinary incontinence prior to getting COVID. I'm in my late 70s and managed it. Now it's so bad, I can't be close enough to a restroom - I've thought of moving into my bathroom to save time. I read, when searching, that is is again neural network related. (One of the articles https://www.cidrap.umn.edu/covid-19/new-study-offers-clues-about-long-covid-s-brain-symptoms)
-My balance is off and this added to severe spinal stenosis (not COVID related) has added to my isolation.
A colleague, his spouse and their two young children just got COVID 2 weeks ago. More people are likely to have long COVID but finding help is tough at least it has been for me. I have no one not even my PCP overseeing all the tests from diff doctors or looking for patterns. I'm hopeful at my appt. in Nov. with the urogynecologist for a test they will be "the one" to take me on!
We're in this miserably together. And it's sad.
JE
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3 ReactionsI have been dealing with Long COVID since before the first vaccine was out, so that is for 7 years now. I have had ringing in my ears almost constantly since then, but I usually dont even notice it unless I concentrate on it. I have read about it, studied the cause, looked for cures etc, with no luck. I just resigned myself to living with it and so far that has been OK. I hate to say it, but there just arent any good treatments for long COVID or tinnitus or anything related to these problems. I have basically just given up on finding a cure and just live day to day. That is not too cheery, but that is about the only way I can get by .
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3 Reactions@jeindc musical tinnitus?? Mine is an alarm that hasn’t been turned off, high pitch. Occasionally cricket sounds. Also have vibrating swooshing sound. Never know till i wake up. May have a so so day where noise is low. Then the next day the opposite. So far hearing good. Been almost a year. I agree ENT has no clue. Had a procedure to didn’t help. Too many advertising there is a cure. FALSE of course.
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2 Reactions@mstv1 No low sodium doesn't cause tinnitus as far as I know. I've been drinking electrolytes because the ENT had me on low sodium diet which caused my sodium to drop below normal. Supposedly too much sodium can cause inflammation in the brain. But how are we suppose to know that if no obvious swelling? It's all a mystery. Now I think the electrolytes are making the tinnitus sounds worse. Have no clue because everyday is different. No one knows for sure. Watch where you read information. Too many claim a cure but you have to watch a 40 minute video or pay to find out. ALL false.
@kentkemmerling1949 - I wrote more below to another post. And this link about musical tinnitus which is like but differs from what I think you experience. The only "good" (???) difference? I can hum along or even sing. https://my.clevelandclinic.org/health/diseases/musical-ear-syndrome that explains it.
More, I am so sorry you have had Long COVID for 7 years. My 3.5 have upended my life in every way. It brought on so many issues with which I'm having to deal, tinnitus and hearing loss the least of them. It's exhausting. And we are mostly forgotten. More research in other countries than the US on why. AND each time I get a 'new to me' or worsened symptom of something mild I had before, I check and yep, it's related. COVID upends our nervous systems and almost all brain/body interactions.
Our apt. building manager was out with 10 days of COVID in the last weeks. Vaccinated, he didn't explain where he got it - but either he took it home and his family, including teens and younger children, and spouse all got it. People are acting as if no one can get it now. My docs say that if I get it again given how sick my body now is, it's hospital and .................
I wish you well managing or ignoring your symptoms.
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