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Do you have tinnitus?
Ring Ring – Do you experience ringing in the ears?
What do you do to help alleviate the ringing?
Does your care team believe it is from MG or is it in addition to your MG?
How does it affect your mental health?
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14 Replies
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Yes and in both ears. Ringing and buzzing is constant in the right ear and comes and goes in the left ear. It started over a year ago. I just went for my first hearing test (age 61) due to the constant ringing in my ears. I was suprised to learn I had hearing loss in both ears. They could not say if it was related to MG. The symptoms started about the time I had a very bad incidence of double vision after a hike which led to the MG diagnosis.
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Yes, both ears. It is so annoying. Unfortunately I keep getting told that there is no cure. The damage that causes it cannot be cured. I’m told having background noise mask sit and takes you mind off it. I came down with MG in 2018, I’m 72 and it seems it is more pronounced now.
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It seems like quite a lot of us experience tinnitus. I get so frustrated with it and right now my other symptoms are usually mild but I sure would like to be able to shut this noise off. I sleep with music on all night because the tinnitus will not let me go asleep. I’m older than you, at 79,; It is good to see other people in their 70s who are still actively fighting back. I’ve had symptoms of myasthenia since my 40s.
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I’ve had tinnitus for more than 20 years and MG since 2023. I find if I get agitated both my tinnitus and eyes are right there agitated with me. Dead silence makes my ears roar, I sleep with the TV on.
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Yes. Tinnitus drives me crazy! I miss the quiet, seriously. My balance is also a problem. I hit the sides of the doorway jams and probably look drunk?
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I found out I had tinnitus about a year before I was diagnosed with MG
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I have tinnitus as well. Likely not related to MG but my time in the Army. It affects my left side more than my right. I actually had to ask my nurse the other day if there was a warning siren going off or if it was my tinnitus. It’s obnoxious and annoying for sure.
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MG since December 2017. Yes I developed Tinnitus in my ears last year and it comes and goes at will. Quit putting QTips in my ears and I now see an ENT every 6 months.
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I developed MG in August 2022, I am now 68. And have been taking all kinds of drugs for 3 1/2 years. To control my MG I developed tinnitus approximately a year ago. It’s unbelievable how annoying it is. It is worse in my right ear not so bad in the left at this point. Discussed it with my neurologist twice and he really didn’t seem concerned. I questioned him. Could it be all the drugs that are causing it really did not give me a straight answer .
myself developing tinnitus and questioning and neurologist about it, I thought he would be more interested since in my research it seems it’s possibly from the brain.
myself developing tinnitus and questioning and neurologist about it, I thought he would be more interested since in my research it seems it’s possibly from the brain.
Is there really nothing you can do to lessen the effects of it because I think it will drive me, nuts! 😂
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I also have tinnitus which seems more prevalent now. 50 years of motorcycle wind noise, concerts, industrial noise, racing, and power tools have probably taken their toll so it’s not that unexpected. During my working career, hearing protection was provided along with annual hearing tests. There was some loss but nothing out of the ordinary over the years. First noticed tinnitus maybe 10 or 20 years ago. I’ve always been able to ignore it and it would disappear unless I thought about it. Lately though, it can be a nuisance at bed time, and my mind over matter tricks have been less successful. I’m unsure if the increase is due to MG, meds, age, or who knows what. Unfortunately, I don’t think any one can definitively determine the cause and there is no cure. It’s one of those struggles you have to try different solutions and hopefully something works for you. Other sound (white noise etc…) and mental distractions do seem to help me.
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How do subcutaneous immunoglobulin infusions two days a week and I always know when I’m at my lowest point when I start having really bad tinnitus in my left ear. I don’t quite understand what that means but that’s been my experience.
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I actually meant to type I do subcutaneous… :/
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That’s really interesting that you get an increase in your tinnitus when you’re getting close to your infusion time. I’ve not noticed a difference in my tinnitus related to my infusions.
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Yes.
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