Even though Chronic Pain Awareness Month is over, this week I officially received a new chronic disease diagnosis: Meniere’s disease. I’m aware-ing ya’ll again of another chronic disease and of my new normal. Hopefully, this post will prove cathartic in nature.
The Mayo Clinic defines Meniere’s disease as “a disorder of the inner ear that causes episodes in which you feel as if you’re spinning (vertigo), and you have fluctuating hearing loss with a progressive, ultimately permanent loss of hearing, ringing in the ear (tinnitus), and sometimes a feeling of fullness or pressure in your ear. In most cases, Meniere’s disease affects only one ear.”
My ENT introduced this disease to me a year and a half ago.
Before taking Little Thing to Disney World last year during Mardi Gras break, my ears started hurting. I felt pressure, sliding, popping, stabbing, and ringing. My right side was worse, and my hearing sounded muffled. The pain was present upon waking and worsened while riding in a car, becoming quasi unbearable while in the driver’s seat. The doctor treated me with steroids and told me to call her if my symptoms relapsed.
My symptoms vanished but returned a month later. I went back for a hearing test, discovering I had lost a low level pitch in my right ear. That’s when my ENT brought up Meniere’s. It’s uncommon, but fibromyalgia sufferers can get it. At that point, it wasn’t a diagnosis. I hadn’t experienced any vertigo, so she presented it as atypical Meniere’s disease. Again, she treated me with steroids and suggested a low sodium diet to help manage symptoms.
This April, my symptoms flared again but with a twist.
On the Friday of spring break (Little Thing was at Granny’s), I hopped on the interstate. About ten minutes into my drive, dizziness set in–not full blown vertigo but imbalance and lightheadedness. I began shaking and sweating. Nauseous and spinning, I exited the interstate and parked at a grocery store for twenty minutes until my world stopped rotating. Getting on the interstate again wasn’t an option, so I drove a little further on once I felt better. It was too soon. I stopped again.
I called my husband. Terrified, he left work, picked me up, and drove me to the emergency room. They couldn’t tell me what was wrong.
In a matter of days, my ears rebelled, and I developed a sinus infection. When I felt safe enough to get back on the road, my dizziness wasn’t nearly as bad, but something felt off. Then, Meniere’s came to my mind.
I went back to the ENT. I got better but avoided interstate driving, the apparent previous attack trigger.
Over the summer, I performed a four hour test that tested my eyes, ears, and balance. Once more, she told me she couldn’t say that it was Meniere’s, but she couldn’t write it off.
Through an MRI, she also discovered that I had a deviated septum and inflamed sinus cavities, so I had a septoplasty and sinus surgery to help alleviate symptoms.
I was feeling glorious ala Macklemore featuring Skylar Grey style up until a few weeks ago when we drove to Illinois for a quick weekend. We were in the car for four days and at the mercy of sodium saturated fast food and roadside restaurants.
To give my husband a break from driving on day two, I gave up shotgun and tried to chauffeur as we entered Missouri. Bad idea–the hilly ups and downs combined with the speed and salt intake triggered a mild attack.
On the way back to Louisiana, my ears revolted.
I found myself in my ENT’s office this week still in pain and lightheaded.
She informed me we had to get my Meniere’s under control–no more this might be what you have, but a definitive yes.
So what’s my new normal? It’s a low sodium diet and water pills. It’s no driving on the interstate or for extended periods of time until it gets under control.
When I’m in a flare like I am now, thirty minutes of city driving pushes it, the ear pain radiates incessantly, and my hearing undulates.
My anxiety level has escalated, but I’m dealing with it. An aspect of my independence gets snatched away during a flare. I am rendered more unreliable to keep prior commitments. Once easy rides, getting to work, navigating primary school carpool, and driving home are now chores.
My description of Meniere’s barely breeches basic understanding. In no way have I described its full aspects. And like my previous post about pain (Chronic Pain Awareness), I’m not writing to complain; I’m writing to inform.
And of course to cope.
Thanks for reading.