Living With 'Meniere's Disease'

Interview Diaries

Hello everyone, this is an interview about ‘Living with Meniere’s Disease’ as part of our Disability Diaries series. Read more about them here Catch up with other Interviews Here in our Master List!

This is an interview with @SlowDecline48 about his life and how he lives with Meniere’s disease.

Ménière's disease (MD) is a disease of the inner ear that is characterized by potentially severe and incapacitating episodes of vertigo, tinnitus, hearing loss, and a feeling of fullness in the ear. Typically, only one ear is affected initially, but over time, both ears may become involved. Episodes generally last from 20 minutes to a few hour or sometimes days. The time between episodes varies. The hearing loss and ringing in the ears can become constant over time.

Thank you for taking the time to answer our questions so we may better learn and understand what it is like to live with Meniere’s Disease (MD) every day. It is our pleasure to find out more.

1. Can you tell us about how and when you were diagnosed with Meniere’s? 

My diagnosis was in late March, 2017. My general physician sent me to an ENT doc, who did a few tests including eye tracking (of his finger). But I did some online research before the appointment; by the time the ENT doc told me I had Meniere’s, I’d already figured it out.

2. How has Meniere’s affected your life since then? Do you find your hobbies have changed?

It has greatly reduced the quality of my life (which wasn’t all peaches & cream to begin with). I’ve been stuck inside my apartment for as much as four days in a row, or slightly more. My housekeeping is slim to nonexistent most of the time, though I don’t leave food out. My art & crafts–a way of life, not a mere hobby–have less output now. A mildly ironic twist: in adapting to my condition I finally learned how to use watercolor brushes–until the onset of Meniere’s I could do many things but I couldn’t paint at all. I cannot maintain the intense focus for hours at a time that I used to have, so in all other ways my art is nothing like it once was. I’ve learned the hard way not to attempt any complex task or one requiring significant short-term memory during a flareup, because when I try, I make dumb mistakes. That’s right: Meniere’s can make you stupid. It’s kinda like having superpowers–in reverse.

I don’t have much of a social life…am trying to change that now, but it’s difficult. I haven’t driven a car since mid-2020 when the last car I had started to die…I could probably drive okay now but I’ve had sudden flareups when I was behind the wheel. It was truly scary. Only by luck & my keeping cool & focusing on the road did I avoid hitting anything or anyone. Oddly, I have a better sense of balance on my bicycle than I do on my own feet.

3. What are the worst parts of having Meniere’s?

That’s a good question… Physically it’s the head pain & vertigo. When it flares up, well…imagine getting coldcocked by Mike Tyson, or Manny Pacquiao. The pain doesn’t always come that quickly but it can, & sometimes does, get that intense. When that happens I have to stop whatever I’m doing & sit down, or lie down. Otherwise, the worst aspect is the imposed limitations. Like most people I like salty foods, but I can’t eat any…gotta avoid pickles, anything pickled in brine. As I said, I don’t have much of a social life. My romantic life is nonexistent (Meniere’s is not the only reason, though). There are so many things I either could do or used to do, that I can’t do anymore. It’s depressing, truly.

4. Can you share with us ways that make you feel better or that improve your life?

It’s not that I feel “better” so much as cope with it until the flare is finished & my ears/head calm down. Long before my diagnosis I tried to drink enough water every day; these days I’m more serious about it than ever. I never consume less than 3/4ths of a gallon, & more if I have energy & am physically active &/or spend time outdoors in the summer. Dehydration aggravates Meniere’s & is bad for your health in general. Aside from that, if the flareup is moderate then even if I can’t focus enough to do complex tasks, I might watch stuff on YouTube or listen to music…sometimes I can still read a little. If you have Meniere’s or any similar ailment then buy a few pairs of earbuds: one for your phone, one for your laptop, extras in case you lose the pair you normally use. When you’re having an attack, stick ‘em in your ears & crank up the sound. Almost any kind of music will do, but I prefer ambient stuff. Dark ambient works when I’m in the mood for it. Anything that’s soothing & lasts an hour or more should work great. Classical guitar does not work because it’s too quiet to compete with the ringing in my ears.

5. How can we help to support someone with Meniere’s during an attack? 

I don’t see how that’s possible. When it flares up it flares up…there isn’t much that can be done.

6. From reading the information it seems some sufferers may be facing hearing loss, does that affect you?

Yes. I have a tiny bit of hearing loss in my right ear. So far I can still hear everything I need to, but that will change as time passes. If I had my way, all the parts of my inner ears would’ve been removed right after my diagnosis. That would mean total deafness, of course, but if that means the head pain & vertigo go away then I’ll gladly agree to the rest of my life being a silent movie.

7. What else would you like to share with us about your life with Meniere’s?

It stinks, like week-old roadkill.

Useful Resources for more information:-
https://www.menieres.org.uk/information-and-support 

https://www.american-hearing.org/disease/menieres-disease/
https://menieresresourcesinc.org/ 

https://www.mindovermenieres.com/menieres-disease-triggers/ 

Thank you for answering our questions, it has been really interesting and a pleasure to find out more about living with Meniere’s.

For anyone interested in being a part of this, there is a form https://forms.gle/MZ1df1FWtJYHQvuy9  to express your interest in being interviewed as well as volunteering to interview someone else.

Catch up with other Interviews Here in our Master List!

Want to join the Disability Support Community Team? Find out more Here

Add or Remove yourself from the taglist here
@777Bre777 @adaptableOcean4193 @adaptablePomegranate1587 @adequatelyInadequate @adventurousBranch3786 @AffyAvo @agreeableTurtle1021 @AguaNector6700 @amusingTalker1267 @Aqua1494 @Arsalanahmed @Ashleylovescats @AttentiveEar @audienta @AutiBoy @Averayne93 @azuladragon34 @BacktotheTrail @BeyondTheInvisible @BlindGrapefruit @blissfulTouch29 @Bndonovan02 @bouncyBreeze44 @bouncyVoice4149 @Breezy2013 @cal1860 @CaringBrit @CheeryPotato @CheerySandi @ChildGoddessFlute @Chloe1644 @cinnamoncocoa @CocoaCassie @Colorfulcatsofhope @considerateBunny7436 @Countrygirl095 @crystallizedrequiem @Daisy7cups @DichotomousDetia @disneymoonlight @Disneywoman @DoISayIt @DonaldK @DylanMark @Edobre399 @Emiliako @emotionalTalker2260 @enthusiasticOwl866 @enthusiasticTortoise6681 @fairmindedWater1140 @Fireskye13 @FrenchMarbles @friendlyEars8792 @goldenSpruce1512 @IcedCoffee211109 @IndigoWhisper @InfiniteThoughts2k19 @Jamesjones10123 @Jewels012222 @jovialButterfly6752 @JoyfulUnicorn @JoyIntoDarkness @K87 @kenzixo @killaj0ule @Kittibear @KuhnDisabled101 @kwheelz @lightTriangle7748 @LikeABirdWithoutWings @lovelycoacoa @lovelySun2900 @LoveMyRotty @magnifiedfaith @ManinblacK @MartianGirl347 @MeaningfulSilence @Meowsicle @MistyMagic @mnhtx3 @modestHickory2783 @modestOcean1286 @moosprbrk @MyNameIsNicole @NaomiR @NevaehRose @NotKhan2 @NovaIsNB @OneErased @PerfectHarmony10 @philosophicalAcai7803 @pinkbunnywabbit @Pixiechu @placidMoth @Plantsaremybestfriends @Poppia @PotFullOfSky2020 @rainbowVibes @Raysofsunshineandrainbow2005 @redGrapes1822 @Redheadmadeofglitter94 @repen13 @reservedCat9143 @RiggsMortis @sabeyesofblue3535 @Seachele @SmolBurrahobbit12 @SparklyCat @specialPurple1582 @StarsOrchidsOwls @stuffiessytem @sunshinegiraffe123 @tearstruck @theboymoana @TimidBear @TomatoEmi @turquoiseHemlock900 @u2canwin @wahmbrenda @Walker7957 @WeedyGarden @wishfulWillow6962 @WishUponAStar968 @wonderfulRainbow817 @xandia @Xisle @Zed786