ANA Discussion Forum
General Category => AN Issues => Topic started by: am2lady on April 06, 2014, 11:12:20 am
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When my ear rings, whatever I'm looking at shakes. Sometimes the ear buzzing/ringing is soft and other times it's really loud...that's when I experience whatever I'm looking at shakes. It's happening now as I'm typing.
Also, my balance seems to be worse. I couldn't even help my friend move furniture without feeling like I was about to fall over.
Anyone else exp. this?
Why does that happen?
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The risk of tinnitus was the reason I stopped going to live concerts. Even though I like all kinds of music, I mostly attended jazz concerts because the quality payout is the highest, but they can be extremely loud too because many are heavily electrified. About 25 years ago, after guitarist John Scofield's live performance, which was ear-drums-busting, I said to myself, "Enough of this." Now I can listen to all of his albums and many concerts on Spotify and YouTube at a much healthier sound level.
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Are you kidding? Things got so bad for me just before my surgery if I was walking on even the slightest downhill incline I'd fall forward flat on my face if I stopped walking. Mind you I was in top physical condition at the time, trail running 5 miles a day. When it all hit critical mass after suffering years of increasing symptoms, I could barely put one foot in front of the other. I had to crawl up stairs and come down in a sitting position, one stair at a time. My head felt like a lead-lined helium balloon,
trailing above and behind my head, with convex vision, as looking through a fish-eyed lens. Oh, I had a wonderful time!
The funny part was I was a professional musician, gigging up to 6 nights a week, half-deaf, driving all over the place with double vision, equilibrium problems and crippling malaise. I still can't believe I survived (and this was around 20 years ago!).
Before I was officially diagnosed, nobody believed me when I complained about my symptoms, with some claiming, "it was all in my head".
But I'm okay now.......really ;-)
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Crazycat I spent two years trying to convince doctors something was wrong- no symptoms but for earache and my ears looked healthy. Also told it was all in my head- an yeah it was! Eventually was reffered to audiologist told hearing fine- but could be something pressing on a nerve suggested ENt who said probably TMJ but lets get MRI...that was 5 years ago. The funny thing was I told the doctors over and over I suspected AN as had pulsitile tinnitus (gone now). My doctor said was gobsmacked I was right. But by then had grown to 2cm.
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That's quite a story Michele! Thanks for sharing.
In spite of the balked and delayed diagnosis, it seems you had a pretty good go of it, retaining 85%
of your hearing along with tumor reduction.
I know it can be rocky in the beginning. It took a couple of years before I got a straight answer from any of the doctors I had visited.
I hate to say it but although I had cultivated a deep respect and trust for the doctors I finally received treatment from, since that time that trust and respect has been dashed to pieces. I can thank the Covid debacle, big pharma and the government for orchestrating it all.
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Crazy Cat exactly! I took two years to recover from one vax. Both my kids mandated for 3! In any event (on way to get results now from 5th MRI) I feel very healthy now. Last year I had RSV and Covid... so doing everything I can this year for my health and wellbeing. For the first time in 5 years I am sleeping naturally without medication. This is a big deal for me.
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Oh my God! So it's not my overwrought imagination.
In fact, I had a yearly physical today. Everything is looking good but during the exam, the doctor
ran through my vaccination status and asked if I wanted the flu and one other I had since avoided.
I said no and told her if they had any connections with Pfizer I wasn't interested. Up until Covid,
I eagerly took every vaccine available; I complied with everything. Not anymore. Those days are gone.
I'm glad to see you're feeling better and hope you continue to feel better.
Covid was cooked up in a lab for the purpose of stampeding people into accepting compulsory,
universal vaccinations, the purpose of which I am not entirely clear on. But I will say this: it ain't good.
It's funny how they vilified the drug, Ivermection, berating people for having taken "horse dewormer".
It actually is a "dewormer" of sorts because it was formulated to treat River Blindness in humans which is parasitically induced. It happens that the drug can be repurposed for veterinary treatment.
One day I was reading about the common blood thinner, Wafarin, or Coumadin and how it was
originally designed in 1948 as rat poison. It just so happens to work as a blood thinner in humans so it was repurposed. No problems there.
In the case of Ivermectin, however, not only did this inexpensive, Noble Prize-winning drug seem to have anti-viral properties, it brought very few, if any, nasty side-effects, yet the establishment went into a full-fledged propaganda war to scare people away from the drug or any other alternative. Then, a year or so later, Pfizer openly admitted to the European Union, that the vaccine 1, did not stop people from getting Covid and 2, did not keep it from spreading.
So if anyone can make sense of this, please enlighten me!
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Crazycat you wont probably get any responses here re vax injury (its a divisive topic as is long Covid) . Suggest you join forum I am on Covid Vaccine Long Haul Autoimmune support on FB - its good and most of us had vax injury or Covid post issues. Very educated bunch people mostly looking for answers.
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Thanks Michele,
I'll check it out.
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Hi CrazyCat,
Did u attend our AN brunches at Maxwell Silverman's in Worcester, years ago? If so I remember u.
Just wanted you to check my reply on 7/20/24 to the thread:
Newly Diagnosed, neck pain question ... started by Neleh.
How are u doing? I was doing fine...hope I will have positive answers after my MRIs.
Regards, Mary Bodah ... Phyl calls me "Grammy Mary"
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You are so missed! :)
Phyl
Are you kidding? Things got so bad for me just before my surgery if I was walking on even the slightest downhill incline I'd fall forward flat on my face if I stopped walking. Mind you I was in top physical condition at the time, trail running 5 miles a day. When it all hit critical mass after suffering years of increasing symptoms, I could barely put one foot in front of the other. I had to crawl up stairs and come down in a sitting position, one stair at a time. My head felt like a lead-lined helium balloon,
trailing above and behind my head, with convex vision, as looking through a fish-eyed lens. Oh, I had a wonderful time!
The funny part was I was a professional musician, gigging up to 6 nights a week, half-deaf, driving all over the place with double vision, equilibrium problems and crippling malaise. I still can't believe I survived (and this was around 20 years ago!).
Before I was officially diagnosed, nobody believed me when I complained about my symptoms, with some claiming, "it was all in my head".
But I'm okay now.......really ;-)
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GrammyMary,
You are correct! He sure did :)
Phyl
Hi CrazyCat,
Did u attend our AN brunches at Maxwell Silverman's in Worcester, years ago? If so I remember u.
Just wanted you to check my reply on 7/20/24 to the thread:
Newly Diagnosed, neck pain question ... started by Neleh.
How are u doing? I was doing fine...hope I will have positive answers after my MRIs.
Regards, Mary Bodah ... Phyl calls me "Grammy Mary"
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Hi Phyl!
So glad to see you on here. AS u know, I haven't been here in a while. My recent MRI (7/31) shows my AN stable (no regrowth) which was a big relief because I feared my latest vertigo and terrible disequilibrium, ear fullness and louder tinnitus were symptoms of growing AN. Whew! So I start Vestibular PT in 2 weeks as it may be due to my cervical spine (always had tight neck muscle/spasms since neurosurgery in 2001). Hopeful the PT will help me get back to normal.
Also wanted to let u know I ran into Sue Howlett at our local Market Basket last week. She hasn't changed in all these years! I was friends with her sister Chris Pohl who passed away last spring.
Maybe we can have a reunion of sorts sometime?
Best wishes ny dear... HUgs to you and hope Bloke is doing good!
Love ya,
Grammy Mary
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Hi Phyl! Hi Mary!
Sorry it took so long to see your replies; I don't come around as much as I used to. So much has happened over the years, good and bad. Some day soon we'll catch-up!