I still remember when my ears first started ringing and having a feeling that there was cotton in them in late 2007. I thought I had an ear infection so went to my primary care doctor and jokingly said, “you better pull a big piece of cotton out of my ear”. He didn’t laugh and said that he saw nothing wrong with my ears – no infection, no inflammation, nothing. I explained that along with the cotton feeling, I was also having trouble hearing and had some dizziness. He recommended I go to an ENT. What I didn’t know at the time was that this was the start of my long, ongoing journey with Meniere’s.
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.” Well unlucky for me, Meniere’s affected both of my ears and forced me to learn a whole new way of balancing my life.
After the onset of symptoms in 2007 and a battery of tests, things moved fast. Soon I began to have significant fluctuating hearing loss in both ears in the lower ranges. This means, I had selective listening at its best. I could hear women’s voices but men’s voices were very hard to hear. As the hearing loss and ringing increased I said to my Doctor, “I always imagined that going deaf would be quiet”. At least with my case, hearing loss was anything but quiet. I learned to max out the television volume, drive without the radio, avoid phone calls, and my husband was sweet enough to try and talk in a high-pitched voice to help when things were at their worse.
For the first several years, I had a constant focus on either the hearing loss or the vertigo. When the hearing loss was worse I obsessed on researching and attacking the hearing loss. When the vertigo was at its peak I obsessed on the vertigo. I followed the basic rules and adjusted to a low sodium diet, started a daily diuretic, exercised, and treated vertigo with Meclizine and Valium. I did some very intense rounds of Prednisone which were successful in restoring my hearing and mitigating the vertigo but just for periods of time. I even went to the experts at John’s Hopkins hoping for a different diagnosis. No luck.
Balancing and managing things at home could be frustrating for everyone, but I still felt safe with my husband, family and friends and had a lot of support. Work was more challenging and even though I had a few select co-workers who would assist me on calls or awkward situations, there were others where I tried to hide the struggle. The truth later was that I was hiding nothing.
While you can often nod, and smile your way through a conversation, there is no hiding vertigo. It’s kind of ironic that vertigo creates a spinning sensation, but paralyzes you at the same time. Vertigo isn’t just spinning. It sends you into a fit of sweating – literally dripping while you try to hold down everything that is churning in you from and inescapable nausea. I didn’t have good cues of when a vertigo episode was going to happen and it seemed like it happened anytime, anywhere and for no reason. I was on constant alert in public, at work, and of course while driving. I popped Meclizine as a preventative and wore Sea Bands and kept holistic oil by my side.
My balancing act with Meniere’s continued for 9 years with each of us winning at different times. I am thrilled to say that based on the past year I consider myself in remission. I made it through 2016 without use of a hearing aid and had only limited vertigo. I knew it was possible for remission of Meniere’s and better control of the disease, but I was also taught that there wasn’t one magic button. There is a theory that Meniere’s is a combination of things – a perfect storm. I often heard the straw that breaks the camel’s back. As an example, if you’ve already cheated on the diet and you are stressed and you forgot to take your diuretic you might be ok. But if you layer on pollen allergies then it might just tip the scales.
With that in mind, I have listed all the changes I have made since being diagnosed but I strongly believe the two biggest impactors are management of my thyroid and allergies. I was diagnosed with Hashimoto’s Thyroiditis in 2015 and have regulated my thyroid with Armor. This is extremely significant since there have been recent studies and postulations that Hypothyroidism and Hashimoto’s are linked with Meniere’s. I look forward to more research on this, but I can’t recommend enough that if you or anyone you know is dealing with Meniere’s to have the thyroid checked. Additionally, my multiple allergies to the great outdoors were causing ongoing inflammation and allergy shots have kept this at bay. Any reduction in inflammation is good for Meniere’s and following is the complete list of how I manage my Meniere’s.
- I have regulated my Hashimoto’s Thyroiditis with Armor
- Allergy shots
- I eat a low salt diet and monitor migraine headache triggers
- I take a daily diuretic, Maxide
- I removed my old silver fillings
- Exercise and mediate to manage stress
- Multi-vitamins and Curcumin
- I still carry Meclizine
- I also wear Sea Bands when traveling on curvy roads or if I am on boats
- I also carry Di-vertigo oil
I still have some permanent hearing loss and occasionally my world still spins, but often, I am functioning without my hearing aid and am on steady feet. I know it will never go away and when it rears its head I admit I still get a little scared. I hope to save my hearing and have at least been given the gift to appreciate not only easy communication, but enjoying music and the sounds of nature on a different level. I have also learned to appreciate being able to hike, ski and ride a bike without the fear that my world will literally turn upside down. I am one of the lucky ones.