Losing Hearing to Ménière’s as an Adult

I grew up hearing perfectly and enjoyed all the activities all young people do.  When I was 21 I started having balance problems which led me to many doctor’s appointments and tests to discover what the cause was.  I was dizzy every day and had to leave the job I had at the time.  The final diagnosis was bilateral Ménière’s and there was no cure for it.  I was told that my hearing would be impacted by it but at that time my concern was balance problems.

Many years went by and when I was in my early 40′s I started noticing problems hearing. My family was even more aware of it with some of the answers I would give.  I learned to give standard replies when I could not hear thinking my hearing loss would not be noticed.  I would say either “oh really?”, “is that so?”, “my goodness”, or “that’s interesting”.  Obviously I didn’t get away with that and I went to have my hearing tested. I had already started experiencing limitations my hearing loss caused.

Both my ears qualified for hearing aids and that was the beginning of wearing state of the art hearing aids for over 18 years.  All during this time I would have episodes of severe balance issues and they were never welcome and always unexpected.  Many times I was limited to finding a comfortable place to sit and stare at a stationary object across the room and not move my eyes or head for hours or I would get vertigo.

Hearing aids were no longer giving me clarity of speech after 18 years.  I upgraded to state of the art hearing aids about every five years with FM receivers until I was relying on lip reading more and more.  My audiologist said I would be an excellent candidate for a cochlear implant though I had never heard of them.  Off I went to the computer for my first introduction to the details of what might give me better hearing.

Today I have two cochlear implants.  Not only have I discovered a new way to hear and enjoy life like I once did, I have also found my balance issues are not controlling my life like they once were.

– Evelyn Gardner

Losing Hearing to Ménière’s as  Child

My hearing loss journey began when I was a very small child, perhaps two years old. My mother recalls that at that time I would occasionally turn my head when she was speaking for her to speak into my other ear. Hearing tests were inconclusive. When I was four I had a sudden, dramatic hearing loss; a complete loss in my left ear and a severe/profound loss in my right ear. The hearing in my right ear fluctuated for about two years beyond that, and then stabilized. It would remain that way for nearly thirty years. Doctors were unable to diagnose it; they told my mother at that time that had I been an adult, they would have diagnosed me with Ménière’s Disease, but that Ménière’s was an adult disorder so that couldn’t possibly be the answer.

In my early 30s, I began having episodes of dizziness and vertigo. I went through a period of time where I would have sudden “drop attacks”…. one second I’d be standing and the next I’d be flat on the ground, with no sensation of falling, just a sudden drop to the ground and overwhelming “rotational vertigo”.  Have you ever laid on your back on a merry-go-round and watched the sky whirl above you? That’s the best way I know to describe the sensation of that particular type of vertigo. Not dizziness, not faintness, but literally seeing the room spin around me. Thankfully, those attacks only lasted through one spring and then they went away. I saw a doctor for them and he ran me through the MRI machine but found nothing of value to explain why I was having these episodes. He chalked it up to a virus. I was so frustrated with him, because I wanted something to FIX it. He did give me some medication but all I could do on that medication was sleep, which was not on my agenda with a house full of children, so I didn’t stay on it for very long.

In January 2006 I started having mild whirly-vertigo symptoms. I didn’t fall this time, but had constant sensation of movement and dizziness and just a general off-balance sensation. I was taking an antidepressant medication at that time and dizziness was listed as a side effect of the medication. I became weary of it quickly and decided to go off the medication to see if that would alleviate the problem – it didn’t. The dizziness became even worse. It continued for several more weeks. One night, during a conversation with a friend, I suddenly observed that I wasn’t hearing her as well. And just like that, I lost about five decibels of hearing in the one good ear that I had.

The hearing in that ear fluctuated wildly for a year … to the point where I was no longer truly afraid of total deafness … I was so frustrated by the constant ups and downs that I was ready for it to all be over. I considered implanting that ear in an effort to destroy residual hearing and be done with it. However, that decision was made for me on March 25th 2007, when I had the final sudden loss that would leave me in a completely quiet world for the next eight months.

On November 5th 2007, I was implanted on my right side. I was in love with my implant from the day they switched it on; I was one of the fortunate people who had good speech comprehension from the very beginning. It was life-changing for me. As someone who had been profoundly deaf my entire life, the sounds that I was hearing were something that I couldn’t have imagined in my wildest dreams. To this day my implant seems an amazing marvel to me. I still hear something nearly every day that makes me stop and listen and reflect with gratitude.

Through the years, especially since having my children, I have been on a quest for a diagnosis, a “why” for the deafness that has always been a part of my life. I’ve done hours of research and asked hundreds of people what caused their deafness, hoping to find a match for my own loss. Amazingly, the answer has been under my nose for years and I ignored it. I never considered that I might have Ménière’s Disease because my hearing loss as an adult was so similar to my hearing loss as a child that I was convinced that the two were related, and children didn’t have Ménière’s. Never mind that I had roaring tinnitus, severe pressure inside my ears, vertigo, and fluctuating deafness, which are the classic hallmarks of Ménière’s;  it just couldn’t be that easy.

I have several friends with the disease, however, and I noticed an interesting pattern: whenever their symptoms would flare up, mine also seemed to flare accordingly … usually in correlation to the weather. And then one night in a chat room in November 2011 people started talking about the drop attacks common to Ménière’s and I was suddenly all, WHOA, I HAVE DONE THAT. So I rushed off to Google and started researching, and discovered after thirty-five years of deafness that children do, indeed, have Ménière’s Disease. I set up an appointment with my ENT who had done the MRI to discuss this with him, and he got what I can only describe as a “Eureka!” look on his face, and he said, “I have no doubts. You have Ménière’s Disease.”

Sounds crazy to go 35+ years without a diagnosis and then be handed one nearly five years after going completely deaf. But I’m grateful to have the diagnosis; suddenly, everything makes sense. The ear pain and pressure and mild off balance sensation (frequently causing bumps and bruises as I careen into door frames and the like) that I get every spring make sense. I don’t remember going deaf as a child, but I remember the tinnitus very vividly … to a four year old, a freight train roaring through your head when there is no train leaves a lasting impression.

One question that I’ve seen over and over again is, “What effect will a cochlear implant have on my Ménière’s Disease?” And the answer is not necessarily comforting: as with every other aspect of cochlear implantation, the results will vary from person to person. Many people report that their symptoms are better, while others see no improvement at all. Some people will have a flare of their symptoms shortly after surgery, and others will experience remission for a time. I continue to have moderate symptoms four years after being implanted, but they don’t interfere with my day to day life. Cochlear implants do not cause Ménière’s and they are not a cure for them.  It’s best to talk to your hearing health professional and make an informed decision based on your own personal hearing history.

There are many causes of hearing loss. In a large number of cases, the cause is never determined.  I’m grateful to have an answer.  It doesn’t change a thing; I’m still deaf. There is no cure. It may or may not be passed down to my children.  But I’m so grateful to have an answer to the mystery after 35 years!

– Jennifer Thorpe