This year will be my 18th struggling with Meniere's. I've tried just about everything mentioned here, with some relief of symptoms between events - even going for months at a time feeling almost normal again. Despite multiple episodes over the years, seemingly coming out of nowhere and fluctuating wildly in severity, I've always managed to recover to a point where I could function again within a few days or so. I can no longer hear well enough to play music with others - not even with studio headphones and high end sound gear. All sound is distorted - pitch and timbre - to the point that I cannot distinguish one instrument from another, nor a minor triad from a major. I have hearing aids. On some days - more infrequently than not these days - I can follow what people are saying, if we are talking in a relatively quiet room. Any ambient sound will crowd out the voices though. I still work, thanks to a unique situation that allows me to work remotely and without too much interaction with others. It gives me a reason to get out of bed at least. I've grown isolated and despondent, and that's on a good day. But, I am not giving up - there is always hope. As recently as October - coming after a weekend at the beach playing golf and fishing - I woke up one day feeling good and hearing as close to normally as I can remember. This lasted for about 3 weeks. No hearing aids, guitars sounding normal in my studio at least, and I could participate in conversations with others, even in a crowded place. But try as I may, I cannot seem to replicate the circumstances leading up to it. Is it psychological? age? diet? weather? stress? emotional? altitude? sea air? Some magical combination of all of these? I can't seem to get a handle on it - but I am determined to figure it out. This intermittent recurrence/relief/recurrence of symptoms makes be believe there must be some combination of variables, unique to me, that I can manipulate to my benefit. Should I discover anything measurable, I will surely post it here. Cheers to all, and Happy New Year...!!!
Happy New Year to you Imasteeler! I understand your post for sure. Very frustrating that we can't determine what causes these changes. I too feel like there has to be something that triggers it. I've been following a Keto diet for almost a year now and have been doing pretty well, hearing ok most days, a few episodes of dizziness over the year. It's not that difficult of a diet to follow and I really think it helped me. In 2023 I had several periods of almost total deafness - none since cutting out carbs. Lately I have used the AirPods Pro 2.0 as hearing aids when I am in a situation like a noisy or just echo-y restaurant. I like them much better than my hearing aids, everyone's voice sounds perfectly normal, not tinny. Most days and situations I hear good enough with my one good ear that I do fine but it is easy to pop in the AirPods when needed. Right now I think I am doing about as good as I will ever be as a Meniere's person. Wishing you the best in 2025
Season 20 here. Haven’t been able to perform since late oughts. Laby in 2013 was a godsend…no more vertigo, no more distortion. That lasted 5 years then my other ear succumbed to cochlear hydrops. I have cochlear implant as well as hearing aids and am in a similar situation as you regarding hearing. I have 6 guitars hanging on the wall and play them maybe a few times per year with headphones through a MIDI device between the amp. I don’t have good days or good weeks as far as hearing, it progressively gets worse. Yet, here I am. The lack of pitch discrimination and tonality is maddening. I used to be so focused on getting the perfect tone out of amp and guitar, but now I’m lucky to tell a C from a D on 5th string bar chord. Distortion of any kind makes that worse. It took a long, long time to come to terms with that as it had been my identity since age 14. Not sure if there is a point here, but the biggest struggle becomes communication for the reasons you mentioned. Like you, I am able to work from home and headphones for meetings is a must—absolutely couldn’t do it live in a conference room. As trite as it sounds, just try to keep on keepin’ on. People don’t understand how much energy it takes focusing on just being able to hear since it’s passive for them: just happens without them having to think about it. Us, not so much. The one thing I have found most helpful is to guide friends and family to speak my name before talking to me, asking a question, etc. This is a prompt for me to start listening. I find without this, I miss the first 3-4 words they said because I wasn’t aware something was directed at me. Makes for some humorous interpretations tho! Hang in! I know you’ve been here a while and know there’s a lot of support on this site. Take care, Kevin
Thanks guys - appreciate your perspective and support. The bar chord thing is what drove me over the egde... I started playing simple chords to compensate for not hearing the intervals a few years back. But if I'm playing a C-major and it comes through sounding like a random cluster of notes between Bb and E... well.... Check my tuning - all good. Count my fingers - all still there. Watch the bass player's fingers - they are playing C notes... Looking into the Keto idea - also the airpods. Next week will visit the audiologist, again, to see if they can tweak these hearing aids any better. As you mentioned, I miss most of the conversation unless someone is speaking directly to me in a quiet room. Asking people to repeat themselves over and over becomes tedious and frustrating - usually I end up just nodding or laughing if others do...
@imasteeler and @Kevinb003, I am so sorry for your hearing losses and their impact on your abilities to play and enjoy music. @imasteeler, I am so glad you had that good three weeks! of the list of 'suspects' you provided, I concur with @Donamo re diet having an effect. For me, eliminating gluten made a huge difference. You might start there if you aren't up for going full-blown Keto. I would give it a week or two. I wish you the best; please keep us posted on your results.
I’m sorry to hear that what you are going through. I remember those days well, I tried most everything, most is well documented on this site. I finally got a labrynthectomy , and it changed my life. I can eat anything and do anything without the fear of an attack. I have never had any symptoms or an attack since the surgery. When
Admin Post That's the thing about seeing some long-timers here -- it's always good to see you but it also means some of you are still struggling with the disease. Ugh. Wishing you all a good and healthy New Year the best you can. Ray