Understanding Meniere’s & Going Bilateral

Meniere’s Awareness mug by Infinity Creations Company

I’ve been dreading and avoiding writing about this, since well it’s always been my Meniere’s worst nightmare. I’m pretty sure I’m not alone in that, I think most of us with unilateral Meniere’s live in dread of the disease invading our “good ear”. I’ve confronted this new reality in moments, and have slowly been digesting my feelings regarding my new bilateral diagnosis. It is hard to think about, as it changes my future. I hope to use this personal catharsis to provide some hope and awareness to this lovely thing called Meniere’s Disease.

I apologize that this is ridiculously long, I apparently had a lot to say, and I struggle with identifying what could be cut. This is my story, and I’m selfishly attached to it. Though I tried my best to show the overall experience of Meniere’s. Thanks in advance to those who want to understand what we go through, and read this entire story.

The first attack in my left ear was heartbreakingly unmistakable

It was 3 weeks ago and was laying in bed engaged in my long process of getting to sleep. The attacks had started up in my right ear about a month before and I had already scheduled to see my neurotologist for my magical steroid injections. That night though my right ear was quiet. I’ve always gotten some fullness on my left side, there’s always been a question as to whether or not it was early Meniere’s or just my damaged middle ear from ear infections as a kid. My left ear has been becoming increasingly fussy. Then it became really fussy, and the fullness and pressure became unmistakably familiar. My tinnitus got really loud (I’ve had bilateral tinnitus since a kid), then it threw in some mid tones, and then some low tones. My low tone roaring tinnitus is always creepy for me since it hides under my very loud high tone screeching. Though I imagine low tone tinnitus is creepy all on its own.

My hearing then got wonky, and I started to feel like an invisible force was pinning me to the mattress. I woke up from my denial and realized the time had come. I managed to get a message to my boyfriend to help me gather my Meniere’s cocktail.  (I’ve been SO bad about keeping that together this time around) Then the spins started. Under my eyelids I could feel the sickening flickering, expect they were moving to the other side. I then accepted that it indeed had happened. My good ear was having it’s first Meniere’s attack.

Since that day I’ve had 4 attacks in my left ear. With each one I was progressively less able to write it off as a bad dream, a mind trick, or a fluke. The entire progression of symptoms was there each time, and my right ear was quiet. I couldn’t blame it on some freaky migraine thing since thankfully the Lamictal still has those under control. I had to face the reality that I’m bilateral now.

Most people who don’t have Meniere’s don’t get how hard this is AT ALL

Going bilateral is bad news, and a rough process of grieving and acceptance, just as Meniere’s in general is. It’s not just about the terrifying isolating vertigo, it’s about the underlying story of progressive hearing loss and vestibular function. No I won’t have profound hearing loss tomorrow, and I thankfully have treatments I respond to, so this is not a concern for the immediate future. However, I lost 30% of the hearing in my right ear in the first 2 years of the disease. I also had profound vestibular loss which thankfully has shown some improvement.

Anyways, back to friends, family and coworkers and the lack of understanding and support in regards to Meniere’s. I have to give a shout out to friends, they understand it the best. When they can’t relate to it they replace empathy with sympathy and listen. Really, that’s all I need. Family and my coworkers don’t understand why I’ve had to hide in corners and cry over something in the future. They try to empathize and understand the entire scope of my illness and can’t. This results in them not understanding that I am grieving and accepting something that is REALLY difficult.

They also don’t understand the concern about no longer having a reliable “good ear”. Since the fall of 2015 I now rely on my left ear to talk on the phone and make out conversations. I’ve lost enough of the speech banana1 on my right side that I am dependent on my left ear. The past year and a half I have counted my blessings and been so thankful that I was just unilateral. I had a reliable good ear, this allowed me to navigate the world. I still have a “good ear” though it is no longer dependable, it now has the disease. While it doesn’t involve profound hearing loss today, it does effect me NOW. It makes me really anxious, and all my carefully laid plans to navigate the hearing world have to change.

The lack of understanding around this illness I’ve always found extremely hurtful. People mistake the progressive hearing loss of old age, and the vertigo of BPPV/MAV/etc with Meniere’s Disease. An understanding of those health issues does not equal an understanding of Meniere’s. Though on the surface they’re close enough to lead to a convincing faulty analogy. This increases the loneliness of having Meniere’s Disease, and also leads to a lack of validation of what’s going on. I even get frustrated with VEDA and how they throw Meniere’s in with all the other conditions that cause vertigo. Meniere’s is way more than vertigo, our inner ears are slowly dying, and the symptoms of the disease are the audible ticking of a very real bomb. I’m being entitled here, but Meniere’s deserves proper validation for what it is.

I think a lot of times people unintentionally minimize Meniere’s since it is so horrible. People when trying to be supportive try to look at the “good side”, which leads to invalidating comments like, “well the deafness isn’t a sure thing”, or “you only have mild hearing loss, that’s great!”. My favorite is, “you can just get hearing aids right?”.

A brief fact moment: Meniere’s hearing loss is often unaidable since the hair cells that pick up those frequencies are DEAD AND GONE. Often Meniere’s sufferers rely on waiting for there to be enough hearing loss to be eligible for Cochlear implants, which often don’t work 100% right since what remains of the inner ear including the auditory nerve is still diseased.

Another big one is in an attempt to provide empathy there is a story about getting old and losing hearing, and how hearing aids aren’t that bad. Or how someone they knew had BPPV and did that magic head shaking crystal moving thing and got all better. My favorite is stories about simply being dizzy.

Vertigo is not just dizziness. In Meniere’s vertigo the Labyrinth in the inner ear is inflamed and filled with fluid and cannot provide stability and balance, in fact it cannot tell where it is in the world AT ALL but keeps trying. This results in the experience of spinning at ALL sensory levels. Our eyes move, the body and stomach feel like their moving, and at times my hearing often goes in and out in a whoosh. It goes on from anywhere from 30 minutes to HOURS nonstop at high speed. That ain’t dizziness, sorry.

In the end people’s attempts at supporting me turn into me having to support them in understanding my disease. Though often people are so deep in their own support mode that I’m left unheard.

If you don’t have Meniere’s, or have tried to relate to someone about a chronic illness you don’t have, please hear me now. The road to hell is paved with good intentions: well intentioned heartfelt but poorly executed support is extremely hurtful and detrimental. I know for me it leaves me feeling angry, hurt, and very alone. It has that exact opposite result of the well intentioned attempt to be supportive.

Don’t try to understand, offer empathy, or advice on something you don’t know. It’s ok to just listen, in fact the best this to do is just listen. I get that it is hard to listen, it’s hard to hear someone else’s pain and not know what to with it. That’s human, but being willing to listen is a very appreciated wonderful thing. What I, and most other human beings want is to be heard. Then you will have an understanding of my story and won’t just be able to support me, but others who are going through similar struggles.

Wow, sorry didn’t intend to go into all of that, but it needed to be said.

Silver linings, hope and moving forward

After my last calimitous Meniere’s flare in the summer of 2015 I dumped my first Neurotologist. My new doctor is wonderful and my new treatment plan is much better. At my appointment yesterday I was able to get steroid shots in both ears. My Meniere’s was still in the “mild” stage of it’s flare. The hope is that I’ll be able to get back into remission with one injection instead of 3, and that I’ll also recover with no permanent damage.

On top of that there is hope that if the underlying systemic condition can be identified that the treatment for that will aid in preventing Meniere’s flares. My Meniere’s definitely follows my other symptoms.

There is a lot of hope that the course of my Meniere’s Disease can be dramatically slowed, and easily treated. This makes me EXTREMELY lucky, most of my Meniere’s friends don’t have this. Instead I watch them repeatedly have more invasive and destructive Meniere’s treatment fail time and time again, and it breaks my heart. While I’m bilateral I’m also a Meniere’s Cinderella story. I have an awesome doctor and treatment plan, and a non destructive treatment* option that has been continuing to work.

Non destructive treatment means treatment that does not involve destroying all or part of the inner ear. In late stage treatment resistant Meniere’s destructive treatment is often the only option and it can often involve complete vestibular loss, and partial or total hearing loss on the affected ear(s).

While I’m grieving, sad, and anxious about my good ear getting sick, I do still have gratitude for all the hope that I have. When it comes to Meniere’s treatment response my story is atypically good.

All of us with Meniere’s are very different, and each of our stories are unique. Meniere’s has a very set constellation of symptoms, though no single identified cause. For some it appears to be autoimmune, others viral, and others still have great success with TMJ treatment. There are countless other suspected causes for Meniere’s, and each has a different set of treatments people will respond to. Many who have Meniere’s don’t have a clear cause, and don’t respond to the current non-destructive treatments.

We all have our own struggles with this strange disease. I love my Meniere’s family, though it saddens me that we know each other due to a shared unwanted passenger (who often demands on driving the car!). With love and hope I write this for those with Meniere’s and for those amazing people who want to understand what we go through.

More about Meniere’s Disease

Some great Meniere’s bloggers, please read their stories

Share Your Thoughts

To Comment: click the lock, and when it turns green press the Submit Button.