Meniere's Disease is a disorder of the inner ear that causes hearing loss, vertigo (dizziness), and ear pressure. It can, and usually does, alter your life in a significant way.
I was diagnosed with Meniere's Disease on March 13, 2020. I'll never forget that date. I was terrified. It was my personal ground zero. I'll never forget the feeling of hopelessness, fear, uncertainty, and anxiety I had.
My ENT told me that I had classic symptoms of Meniere's Disease. I didn't know what Meniere's Disease was at that moment, but the idea of having a DISEASE felt terrifying! The ENT was pretty casual about my diagnosis, saying "I see this all the time." Of course, he's an ENT. He continued by saying that Meniere's Disease will be with me for the rest of my life but that I can take simple steps to control it. His suggestions were:
- Eat less salt
- Take a diuretic
- Reduce my stress
He gave me a prescription for diuretics and told me to take one pill a day. I left his office, dashed to the nearest CVS and got my pills wondering if, by some miracle, they could make this disease go away like some magic potion.
While waiting at that CVS the severity of this all hit me: this was the first day of my new, scary, life--a life filled with uncertainty, limitations, sickness--the end of life as I'd known it.
I had pressure in my left ear. I had had it for over a month. I couldn't hear much out of that ear, especially low-frequency sounds. There was no pain, but it was incredibly annoying. Vertigo was minimal, luckily. From time to time I felt a little off-balance, but the dizziness never got worse than that. As a former long-distance athlete, I had cycled 100+ miles in a day and had regularly gone on two-hour trail runs. The idea of losing my balance was terrifying.
I also LOVE music, it fills me with joy and easily calms me. I like crystal clear musical sound and I have audio equipment that gives me the experience I've grown to love. I was now faced with the prospects of a life without this meaningful, important, and personal experience. Would I ever be able to listen to music in the same way again? How do I cope with this?
I LOVE red wine. I love ending my days with a glass or two, sometimes three. I have been doing this for years. Over time, I have developed a taste for good wine and had invested in my hobby, with older vintages waiting for me in my wine cellar.
In a flash, without warning, it felt like those days of fun, wine, and music were history. "How to get rid of Meniere's disease?" I asked myself.
Each one of us has our fears and disappointments when diagnosed with Meniere's Disease. The diagnosis means change and we all know that change is difficult and scary.
Meniere's Disease and The Web
Invariably, when you're diagnosed with Meniere's Disease, you'll Google "Meniere's Disease" and 99 out of 100 search results will scare the daylights out of you. Of course, they will and with good reason, at this early stage, you're unlikely to have the faintest experience with Meniere's. Here's the kind of stuff you'll find in a Google search of "Meniere's Disease":
"There is no cure for Meniere's Disease. Meniere's Disease cannot be treated and made to “go away” as if you never had it. It is a progressive disease which worsens, more slowly in some and more quickly in others." (https://brainfoundation.org.au/disorders/menieres-disease/)
This is TERRIFYING! When I read this my heart dropped to the floor. Let's break this sentence down:
- There's no cure for Meniere's Disease
- It cannot be treated to go away
- Meniere's Disease will get worse
Wait a minute. This pressure in my ear, the dizziness, the hearing loss will ONLY GET WORSE!? There's no hope for me to get it to go away?! What a terrifying prospect.
Even worse, I went back to the Google search results for "Meniere's Disease" and clicked on the next few links and low and behold I read more of the same terrifying statements about what I could expect in my future:
"Attacks of dizziness may come on suddenly or after a short period of tinnitus or muffled hearing. Some people will have single attacks of dizziness separated by long periods. Others may experience many attacks closer together over several days. Some people with Ménière’s disease have vertigo so extreme that they lose their balance and fall. These episodes are called “drop attacks.” (https://www.nidcd.nih.gov/health/menieres-disease)
I refused to believe that there was no way out of this hell I found myself living it. I read as much as I could on Meniere's Disease, I read through the WebMD type of websites then went on to read a few dozen personal blogs, forums, blog comments, you name it, I read it. In most cases, I read heart-wrenching personal anecdotes of suffering, confusion, and fear. Personal stories about how the progression of Meniere's Disease got worse, how there was no cure and no hope.
What I never came across were success stories, stories of people who learned to cope with and control Meniere’s. Surely people had done so?
It was at this point, though terrified, that I felt determined to control Meniere's Disease, not let it control me. I decided the first step was to heed my ENT's advice and reduce my intake of sodium, but even more importantly, I knew that I had to be as introspective as possible and learn to listen to my body, experiment with food and lifestyle changes. I had to adapt to win.
The Changes I Made
Before I tell you about the changes I made to reverse my Meniere's Disease symptoms, let me go over the most commonly asked questions I've both asked and read online and share my experience with each. I'm not a medical doctor so I can't give medical advice, but I'm a Meniere's Disease sufferer AND I'm the type of person who's willing to work day and night, take personal risks, and experiment to solve a problem. So, here's my experience so far...
Does Meniere's Disease Go Away? Is there a Cure?
Will Meniere's Disease go away? I don't know. But Meniere's Disease CAN be controlled, regardless of the severity of your experience, there's always a "better". It's relative. Better is always preferable.
Depending on the severity of your diagnosis you CAN go back to a life that is almost exactly as it was before your diagnosis. If your Meniere's diagnosis is severe, you CAN control it and find ways to reduce its impact on your quality of life. You can be happy. For me, Meniere's Disease was a wakeup call. Before it, I was stressed, eating terribly, drinking too much, and not exercising...I did this for years.
Symptoms of Meniere's Disease
My symptoms were, in order of severity: pressure in my ear, hearing loss--mostly low frequency, tinnitus, and slight dizziness. After reading an inspiring blog post written by a nurse who claimed that Meniere's Disease is a nothing more than a collection of symptoms and the solution to curing it is to solve the root cause of each symptom, I decided to take her advice and tackle each of my symptoms independently:
- Pressure in my ear is due to inflammation brought on primarily (though not exclusively) by water retention. The solution was to reduce water retention/bloat by reducing sodium intake and eliminating alcohol and caffeine.
- Hearing loss was due to the pressure in my ear which was due to water retention.
- Tinnitus, I had no idea what caused the tinnitus but I suspected it was inflammation/water retention.
- Dizziness is caused by water retention. The inner ear overfills with fluid and balance is affected.
In the end, I felt that reducing inflammation would reduce the symptoms. There was no way for me to know to what degree, but I owed it to myself to try. But eliminating the foods I like to eat, the wine I like to drink, and the coffee I loved to drink represented a MAJOR lifestyle change. It's never easy to switch off the old you and slip into a new life. It's HARD but it was necessary.
I could let Meniere's Disease control me or I could control it.
Meniere's Disease Triggers
I figured out my Meniere's Disease trigger pretty quickly. Within a few days of my diagnosis, I'd cleaned up my diet. I was Vegan. No dairy, extremely little sodium, no booze, little bread. I was clean living. My Meniere's symptoms were slowly fading. I wanted to reward my good adjustments by rewarding myself with an indulgent night of pizza and Cabernet Sauvignon. The pizza was DELICIOUS and the Cab was out of this world! I had four glasses of wine. I felt great that evening BUT the next morning I woke up with pressure AND pain in my left ear, my sinuses were stuffed with mucus, I was bloated, a bit dizzy and my tinnitus had turned up the volume. My trigger was clear: the salt in my pizza combined with copious amounts of alcohol created a bloat-fest in my body that re-ignited my Meniere's symptoms.
This event re-doubled my determination to eliminate all of my Meniere's Disease symptoms.
How I "Cured" My Meniere's Disease
Truth is, I haven't found a cure to Meniere's Disease, but I have figured out how to eliminate almost all of the symptoms. It wasn't easy. I experimented. I wrote a journal detailing all my meals, snacks, moods, stresses, workouts, meditation sessions, blood pressure, etc. Within four weeks I was mostly symptom-free. The single symptom that continues is the tinnitus but even it has markedly improved, the volume of my tinnitus is far lower than previously.
Meniere's Disease is a collection of symptoms. Ask any doctor, ENT, or other specialist and they'll all tell you the same thing: they don't know what causes it, there's no cure and Meniere's Disease is a label given to a condition where three symptoms occur simultaneously: pressure in the ear, vertigo, tinnitus. There are other symptoms, but these tend to be the primary symptoms.
Another way of looking at Meniere's symptoms is to think of them as the product of inflammation. If you reduce the sodium intake, chances are you'll reduce the severity of the symptoms. Reducing the accumulation of fluid in the cochlea leads to a reduction of the pressure, imbalance/vertigo, and tinnitus.
Many doctors believe that Meniere's Disease is all about fluid pressure, which is a type of inflammation. Meniere's Disease can't be treated with drugs. Sure, you can take a diuretic and it may help but the best way to help your Meniere's Disease is to change your lifestyle: reduce your stress, reduce your intake of sodium (reduce the bloat), reduce processed foods, and exercise.
1. I Changed My Diet
The first thing I did was to reduce my sodium intake. The effect was almost immediate, within a few days my ear felt better, but the symptoms were still present.
Knowing that I needed to move fluids out of my body while reducing my stress load, I began to run again to induce sweating. I didn't intend on being Vegan but looking back I pretty much adopted a Vegan diet, a low sodium version. I had already been vegetarian, but now as a vegan, I eliminated all dairy from my diet. I love cheese, but it's very sodium heavy, so I had to cut it from my diet. I also LOVE potato chips but again, high in sodium so, reluctantly that too was eliminated. I checked the sodium content for anything I was going to eat--packaged or fresh. I was surprised to read that celery naturally has sodium! I stopped eating celery.
I changed my diet but I'm still human and I like to indulge from time to time. So, I'm happy to say I'm a cheating Vegan.
I take care to offset whatever sodium-rich meal I'm planning to indulge in, with sodium-free meals that same day. Or, I'll do an extra-long run and sweat more. The point is, I monitor the sodium intake and use tools of diet and exercise to dial down the effects of indulgences or mistakes.
2. I Gave Up Alcohol...Mostly
I quit the booze, except for that glass of rosé I had last night! Previous to Meniere's, I drank 3 to 4 glasses of red wine each night, religiously for many years. Now, I treat myself to a couple of glasses each week or two. The point here is that I drastically cut down on drinking. What I used to consume in one day, I consume in a week and that helps with water retention.
I also quit drinking coffee…well, mostly. Sometimes I wake up and want a cup of coffee, so I give that to myself. I might have two-three cups a week, where I used to drink three to four cups a DAY!
We are human. We can't realistically expect to live a spartan life for years, but we can tone down activities that negatively impact us. We can see them as occasional treats for good behavior. Things to look forward to!
3. Water Fasting
Something else I discovered that helped me ALMOST ELIMINATE ALL SYMPTOMS was water fasting. I read up on water fasting and realized that this age-old tradition has been used for healing, detoxing, and spiritualty for thousands of years. Many medical doctors shun the practice, but a few espouse its benefits. Basically, in its pure form--only drinking water--fasting gives the body's organs time to rest and then begins to remove the buildup of toxins we acquire over our lifetime. Who wouldn't want that? I decided to try seven-day water fast.
Not eating anything for seven days wasn't easy--actually, it was one of the hardest things I've done. I didn't drink coffee, juice, tea...nothing, other than water. Was I hungry? YES! But I cleaned myself out a bit and discovered a few things about myself in the process:
I Wasn't Hungry
It's easy to confuse hunger for appetite. From the day we're born, we eat and we rarely pause. We eat breakfast, lunch, dinner, snacks. We're told to eat for energy, eat for health, even eat for fun.
Naturally, eating becomes habitual and so we inadvertently train our bodies expect food--hungry or not--at certain times of the day. The reality is, we each have enough glycogen stores in our bodies to last us at least a full 24 hours, if not longer. And we all have enough fat stores (no matter how thin you are--you have fat stores) to last weeks. We CAN'T be hungry. What we are is habituated to eating, especially at certain times.
During my seven-day fast, I predictably got hungry around breakfast, lunch, and dinner times, otherwise, I wasn't too bothered with food. During mealtimes, I dreamt of foods I liked: savory, salt-heavy foods. Day four and five of my fast, I woke up at around 1 am thinking of pizza and potato chips.
My takeaway during the fast: I'm addicted to salty foods. Not as in a junky who can't stop, but rather someone who is habituated to eating savory foods at most meals. I knew I had to change that to improve my life, to "rid" myself of Meniere's Disease symptoms because salts cause bloat and that's what we're all trying to get rid of to improve our symptoms.
Changing my relationship with the foods I like hasn't been easy. I'm still working on it. I slip from time to time, I'm human. But I'm improving and the water fast gave me the awareness I needed to begin to shift my diet in the right way.
When diagnosed with Meniere's, I was in terrible shape from not having moved my body in years. It was hard to get started, but I did, I had to.
I started by walking every day for 20 minutes. Honestly, I felt like crap, mostly psychologically because I was shaming myself for having let myself fall into such poor physical shape--I was a long-distance endurance athlete in my past, how could I have let this happen?!
Within a week I went from walking for 20 minutes to jogging for 15 minutes. A couple of weeks later I began running for 20 to 30 minutes at a time. Now I'm running 45 minutes per day.
Resuming my old running routine was KEY. Exercise gets the blood moving, reduces stress, eliminates sodium (and toxins) through sweat, and releases endorphins which improve mood. Running has helped me in ways I can't describe, especially during those moments where I fumbled and ate a high sodium dinner the night before.
No matter how hard you try you simply can't avoid sodium (except during water fasting) so I made it a point to be as physically active as I reasonably could to move sodium out of my body. You need some sodium to maintain health, but most of us get entirely too much each day.
5. Stress Reduction
I was told by my ENT that stress is a major trigger in getting Meniere's Disease. Sure enough, when I got the bad news about my Meniere's Disease diagnosis I had been in a period of intense stress that began about two years prior. It was the product of a bad, very bad, business arrangement that had the potential to financially ruin me. It was probably the hardest two years of my life. It didn't have to be of course, but that's the way I handled it. I could have seen things differently, not dwell so much on the possibility of a worst-case outcome to my problem. Hindsight is 20/20, right?
I still have stress, like anyone else, but now I choose to handle it differently. I don't let it fester, I find my ways of letting it go: meditation, running, writing, listening to music, whatever of my favorite pastimes seems best in the moment of stress. Recognizing when stress is building and having tools to manage it is essential.
I can't say enough about how sleep has helped me. A few weeks ago while talking to a friend about my Meniere's condition, he mentioned that "sleep heals" and his comment resonated with me...he's right.
Before getting out of bed each morning I took a few minutes to lay silently and take stock of my tinnitus. Overtime it improved dramatically, as in the volume of ringing was lowering. I kept asking myself "can tinnitus be cured?" I think the answer is, no. But I'm convinced it can be minimized.
I used to be stuck in a cycle: drink wine at night, which affected my sleeping, which meant waking up tired, which meant drinking lots of coffee in the morning to feel halfway alert. The combination of all these parts of the cycle, when done for long enough, will have an impact.
Not drinking wine means I sleep soundly, it means I don't have to drink coffee to get started in the morning. It means I'm mostly fresh when I wake up. And eliminating this cycle reduces my stress!
How About Those Diuretics I was Prescribed?
The idea of taking pills for the rest of my life is horrendously unappealing. I fully understand that my Meniere's Disease isn't a bad case and my heart goes out to those who have severe cases and whose choices may be more limited. But I think that most people have more choices than they think. I took my diuretics pills for four days and never did again. The combination of diet, exercise, the occasional water fast, and low stress relieved me of the burden of pills. I now take no pills at all.
I'm extremely thankful to the people who've supported me during the dark days of my diagnosis and especially those who armed me with knowledge on how to help myself. I set out to write my experience to hopefully help those who are seeking encouragement in light of a difficult Meniere's Disease diagnosis. I know much of what's out on the web is discouraging, and it's for that very reason I wanted to share my story. For most of us Meniere's people, suffering doesn't have to continue. We can use Meniere's Disease to make our lives better than it previously was. There is light at the end of the tunnel. We never know what will happen in the future. I've often thought that, despite all this work I've done on myself, my Meniere's could worsen. Of course, it could, but taking the steps I'm taking now significantly reduces my risk. Doing nothing is not an option. Doing nothing is quitting.
I've had the great pleasure to communicate with quite a number of people from all around the globe, most by email and some by phone. It's been really great to hear your stories about what you've experienced and, for some of you, how you've overcome Meniere's and found a normal life again. It's inspiring to hear the stories from those who used their diagnosis to make positive lifestyle changes and now have a far better life!
A few of you have emailed asking how I'm doing on the one year anniversary of my diagnosis. I intened to write and share that with you soon, but the short answer for now is: I'm doing well, I (mostly) still stick to my diet, meditation, fasting and exercise routines. I have minor set backs but thankfully they're very minor. More to come.
I get a few emails each week from readers of this blog post and I'm always inspired by the stories of determination and resilience each share with me. It?s not easy to open up and be vulnerable, but I?m thankful for each email that trusts me enough to do so.
The following are some emails I?ve received and am sharing with the sender?s permission. There are many of us who are courageously working to find the solution to manage our Meniere?s experience.
April 21, 2021
I just wanted to write to you to thank you so much for your wonderful article on how you handled your Menieres diagnosis. I have been suffering for nine years now but last week was the first time that Menieres was mentioned as a very likely Diagnosis. I am awaiting an MRI which is terrifying me as a person who suffers very much with health anxiety! I do recognise a big period of stress before my diagnosis. Having read on the Internet about peoples experiences and joining Facebook 'support groups'
I was horrified at the seemingly terrified road ahead.
However, having read your article I now have some hope and plan to try to turn my life around. I have put on a lot of weight over the last few years and I've been living very unhealthily so I am hoping I am someone that will end up with a life better than before.
I can't tell you how much your positivity was needed today and I'm very grateful.
With very Best wishes and thanks,