What is Meniere’s Disease? An Insider’s Perspective

DJ EvansI met DJ Evans online several months ago through our shared interest in hearing loss awareness and advocacy. Like me, she is a mom with hearing loss. Unlike me, she also lives with Meniere’s Disease.

Those of us who don’t live with Meniere’s likely have a vague idea of what it is. Before interviewing DJ, I thought Meniere’s was simply a hearing disorder that affects balance. But is that all it affects?

Lipreading Mom: What is Meniere’s Disease, and how has it impacted your life?

DJ: I grew up hard of hearing only my parents didn’t know and neither did I. They never had my hearing tested and just thought I was talking loud and not listening because I was a hyper kind of kid and the doctor agreed. When I was 16 I decided to get my hearing checked because I was tired of people saying I was loud and I thought there must be something to it. The audiologist told me I needed hearing aids in both ears. I decided I only needed one because they were very expensive and being out on my own I didn’t have a whole lot of money. There was also my pride!

The hearing aid helped a bit at first but I could never adjust to all the back ground junk noises. I kept going back and complaining of dizziness and fullness in my ear and the audiologist just said it would take time to adjust. I only wore the hearing aid when I needed to and to make a long story short, the dizziness just kept coming and going and eventually started in my other ear as well. I just kept compensating.

In my 20s I really started to notice the drop in what I was used to hearing as well as noises that started. I learned later on that it was tinnitus (ringing in the ears). I had my first two kids in my mid-20s and pregnancy seemed to aggravate my ears. I had my youngest and last child at 33. The dizziness and fullness started coming all the time. I searched out an audiologist who sent me to a specialist who ran a bunch of tests and then welcomed me to the world of bilateral Meniere’s Disease.

Meniere’s is usually only diagnosed in one ear. Both (bilateral) is not as common. Meniere’s is a disorder of the inner ear that can affect hearing and balance to a varying degree. It is characterized by episodes of vertigo, low pitched tinnitus, and hearing loss. The hearing loss has a fluctuating then permanent nature, meaning that it comes and goes, alternating between ears for some time, then becomes permanent with no return to normal function. It is named after the French physician Prosper Ménière, who, in an article published in 1861, first reported that vertigo was caused by inner ear disorders. The condition affects people differently; it can range in intensity from being a mild annoyance to a chronic, lifelong disability. You can read more about it here.

It has impacted my life to varying degrees. My first drop attack happened coming down a flight of stairs, and I fell and broke my wrist. The second big one happened in a grocery store, and I was really embarrassed. It prevented me from driving when I wanted because I was afraid. I drove a school bus around that time, so I had to give it up. The loss of income, independence and the fear made me quite anxious and depressed. At one point I remember feeling like I was going to die. I even asked the specialist to give me a vestibular nerve dissection in both ears. I was willing to go totally deaf just to get rid of the symptoms. Of course he said no!

LRM: How did hearing loss and Meniere’s affect your life as a mom?

DJ: When I was pregnant with my last child I knew I had to do something, put something in place because it was going to be harder with three children. I was already struggling, and my son had a speech problem from developmental delays. After thinking about it for a while I decided since both kids were very visual that I would teach them sign language.

I photocopied black and white pictures from a book I bought called Signs for Me. I let the kids color them, and I glued them onto construction paper and put them up all over the house. The sign for bathroom was prominently displayed on the bathroom door. The sign for teeth brushing was stuck on the bathroom mirror, and the sign for bath stuck on the wall beside the tub. They picked it up really fast, and the signs I didn’t know I learned from a CD-rom I purchased off the Internet. Eventually I took a sign language class, and I learned to lip read as well. The thing about lip reading that I discovered was that you don’t know how much you already can do it until someone points it out to you.

I explained Meniere’s to the two oldest kids and my stepson. I told them why it happens, what it does and what to do in certain situations. They had seen me drop once before and were quite calm about it. I made sure I did not hold the baby when I was dizzy because I never knew what would happen and thankfully nothing did! As the baby grew, I taught her American Sign Language (ASL), and she could sign before she could speak. People used to think she was deaf.

LRM: What coping strategies work for you in communicating with your grown children and others?

DJ: I believe in total communication, meaning to do what it takes and don’t exclude anything. I can sign. If the person I am communicating with can’t, then I try to lip read and explain to them to face me and speak clearly and slowly. If that doesn’t work I have a pad and pencil on hand. If that doesn’t work and the circumstances permit, I get an ASL interpreter. Usually if people cooperate there is no problem. I have a frequency modulated (FM) system I sometimes use, but it’s not great all the time due to fluctuations in my hearing. My kids know (but still forget) that I can’t hear them in the other room and usually seek me out. They don’t sign as much as they used to now that they are grown, except for my oldest son. I still have to remind my youngest to slow her talking down so I can understand her. She will sign a word or two if I don’t understand them. Everyone has a smart phone, so there is quite a lot of texting or emailing going on as well.

LRM: I like your philosophy, “Everyone wants happiness, no one wants pain; but you can’t make a rainbow without a little rain.” Where did that quote come from? Did you write it? What does it mean to your life?

I saw the quote on the Internet one day while browsing. I was feeling low that day and after I read it I thought, “Yeah. That’s so true!” I can’t expect to be handed everything on a silver platter. I thought back to all the obstacles I had overcome and all the positives I had because of my ideas and hard work, so I started signing my emails with the quote to remind me how far I had come, how far we as a family had come. Maybe it would remind others of their hard work too. We are thankful for every rainbow and we know we can weather any storm.

LRM: What do you enjoy doing in your spare time?

DJ: In my spare time I ride my motorcycle when I can. Therapy is expensive, but wind is cheap! I am an avid crafter (crochet, knit socks, paint, bead and quill work, and way too much to list here). I raise meat rabbits, and I am training a service dog for my son.

~*~*~*~*

Comments about This Interview

Post your comments or questions for DJ Evans here, and Lipreading Mom will make sure she reads them.

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10 thoughts on “What is Meniere’s Disease? An Insider’s Perspective

  1. Reblogged this on Another Boomer Blog and commented:
    I have this dratted problem – Ménière’s disease – and it has taken a good deal of my hearing and left me with impaired balance. I hope everyone reads this and shares it because inexplicable dizzy spells can mean trouble for hearing. Please share – the person you help may be someone you love.

  2. The microprocessing chips in the latest digital hearing aids are amazing and truly change lives for the better. We see hundreds of hearing aid patients who have made the change from old analog hearing aids to new digital hearing aids with microprocessor chips, and they simply love them! Some of the latest technology and information can be found at http://www.arizonahears.com, including a virtual hearing seminar and 3D images of the outer, middle and inner ear structures.

  3. Great interview. I have had ringing in my ears for decades, but within the past year have begun to experience the dizziness and sensation of moving even when I am standing still. I’m going to do more reading on Meniere’s!

  4. It has since occured to me that my mother may have had Meniere’s since she used to end up in bed, miserably ill with dizziness and lightheadedness and “feel like she was dying.” In fact, once she scared the bejesus out of me (I was 12 or 13) by having me sit with her and hold her hand while she told me not to worry if she were to die because she’d be just fine and so would I. Talk about the hair standing up on the back of my neck. And she was anything BUT a drama queen. She did not die but I remember to this day the feeling of helplessness I experienced. Whew!

    • Marsha – I have read that Meniere’s can be genetic. Your story really struck a chord with me. Thank the Lord that your mom was okay after she had her talk with you.

  5. Miss Shanna, thank you for interviewing Dj Evans. Some siimilarities in her life and mine touched my heart. I also was a school bus driver and hated leaving my ‘angels’ due to arthritis and now Meniere’s. God is my ultimate “spirit-lift” when these maladies get me down. I am inspired by Dj’s quote “Thankful for every rainbow. We can weather any storm”. God bless your devotion to His work, Miss Shanna!

  6. hi wow its like reading about my life on here, quick question do you suffer from vertigo/dizziness from wearing hearing aids? with me I only suffer from vertigo in right ear when I wear my aid but feel fine without apart from tinnitus, fullness sensation and have recently started to get dizziness from left ear when I am in noisy environment causing me having to reduce volume or switch off or try avoid noisy places which you can imagine it is affecting my life and my job, and now face a future of going completely deaf needing to learn sign language… I have 3 kids and after each pregnancy its seemed to affected my ears, just like you…. thank god someone out there had similar experience as me I thought I was going crazy!!! just hope I don’t get those drop attacks x

  7. I also have bilateral Meniere’s Disease. As a kid, my mom always said I had “selective” hearing, I only heard what I wanted to hear, but I didn’t. I was getting “dizzy spells” that I couldn’t quite explain, I wasn’t even 5 years old. At one point I thought I only got “dizzy” after eating my mom’s homemade caramel corn. Neither of my parents believed me, my mom more so. She said I just didn’t want to go to school, I was a straight A student and LOVED school. I’ve always had ringing in my ears, I thought it was normal. I was always getting hurt, broken bones, dislocations, concussions, bruises, everyone called me a klutz! I left home at 15 years old and moved in with my boyfriends family. I’d been there a month when my boyfriends mom called my dad and told him that he needed to get my hearing checked. Surprise, I had significant hearing loss in both ears, I had tubes put in 3 different times and they won’t do it anymore. It helped me hear better, but not like it should have. I had 4 kids by the time I was 25, my oldest used to have to repeat everything my second child said, I couldn’t hear her. With Meniere’s, your Hearing fluctuates and having it in both ears made it very hard to test my hearing, I was not diagnosed yet. I found myself being a single mom of 4, had to stop homeschooling and get a job in 2003. I get migraines as well and a ton of other problems I won’t go into, but the vertigo had not happened in several years, I thought it was gone but it wasn’t. In 2009 at an employees service anniversary, I had a horrible vertigo attack that left me lying on the floor of a portable toilet, in tears, getting sick, (another unfortunate side effect of vertigo besides vomitting is diarrhea) unable to get up and absolutely certain I was dying. I laid in there for over 2 hours before I could could open my eyes long enough to find and call my husband of 2 years and tell him where I was and come get me. That attack was the worst I ever had at that point. It lasted several days and then it was gone, Yay! Nope! In March of 2010 it happened again and this time it lasted weeks, months. I’d been working full time and going to college 3 nights a week for 3 hours, plus lab hours I had to put in for my classes. Ironically, I was going to college to become a sign language interpreter. I was halfway through ASL 4, 1 week away from finishing my Fingerspelling class and also halfway through ethics. If you want to learn some interesting history of deaf people, the the book “When the Mind Hears”. I had to drop out, my company after the first 4 months put me on “company initiated leave” because I couldn’t work. I kept going to ENT and they did nothing, prescribed motion sickness pills that did not help me at all. I had to investigate, constantly reading articles on Vertigo, no one knew what was wrong with me and frankly, no one seemed to care. After 1.5 years being bedridden 95% of the time, I was talking to my maternal Aunt, I started to describe what had been going on and she says “Oh, you probably have Meniere’s Disease. I have and so does Auntie M.” I was relieved, shocked, angry at my mom who knew her sisters had this disease but dismissed my symptoms, at the ENT doctors for not figuring this out, relieved because I now knew what I had, they could ‘fix” me! I took my new information to the ENT Department and was told that Meniere’s Disease is not familial, not genetic, by the head of the department. From what I researched I knew it was and besides that IF it wasn’t genetic, it didn’t mean I didn’t have it. Over 3 years later, I’m finally laid off and finally diagnosed with bilateral Meniere’s Disease and there is no cure. I’ve been bedridden for 3.5 years, I’m not living, I’m just wasting oxygen others could be using. 3.5 years later, I’m referred to physical therapy for vertigo. Why did it take them that long to send me somewhere to get help? I started PT and it’s hard at first but after a few months I drove for the first time in almost 4 years! I was so excited, driving has always been my freedom and I’d lost it. It didn’t cure the vertigo issue, but instead of being in my bed 95% of the time, no lights, nothing, I was now in my bed only 75% of the time. I tried to find a job, but no one wanted to hire someone that could have a vertigo attack at any moment and either not show up to work or drop/fall at work. I tried to do some online work, but the light from the screen hurts my eyes and after a short time sets my vertigo off, I had a job for 1 week online, but could only work 4 hours total, they let me go. I too went to my new ENT and told them I want the surgery to remove part of my inner ear, I’d rather be deaf than have vertigo. My doctor also said no. Apparently they’ve tried it on people that are affected on both sides and it had the unfortunate effect of causing nonstop spinning. It’ll be 8 years next March, my hearing has decreased and I’m sure I’m going to lose the hearing in my right ear first, permanently, I’ve already had days and weeks I can’t hear out of it. My vertigo has gotten worse despite the PT, I’m in bed about 85% of the time, probably more. I drive, but only once or twice a month and never alone. I walk with a cane due to other issues besides balance so I only have one hand to steady myself, which means I’m never really steady. I’ve been told countless times that I have no business being in public drunk, I don’t drink. I just can’t walk right, I knock end of aisle displays over. I can’t sweep, vacuum, rake, cook, etc… my husband comes home from work and makes dinner, does the laundry, etc… Me? I live in constant fear of Vertigo, of falling, I’m being held captive by Meniere’s Disease. I’ve been trying to get disability but have been turned down at least 10 times. I’ve been denied again and I’m appealing it, I’ll probably have to go to see a judge because the appeal/request for Reconsideration will most likely be denied. If I can’t get it this time, I can’t apply again, unless a miracle happens and the vertigo goes away and all my other health issues go away and I can get a job to earn more Social Security points. But that’s unlikely and I’m just some letters on a piece of paper to them, they have my records, my diagnosis but they don’t have my vertigo, my balance issues, so they think I’m fully capable of holding a full time job. I’ve heard someone made goggles to show people what it’s like when you’re drunk, maybe someone can make them so they know what this feels like, then let the people who are making these decisions and lots of other people who don’t understand what it’s like wear them for an hour. I bet that would change their minds. Meniere’s Disease has only one commonality between everyone that has it, there’s no cure!

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