Friday, 4 May 2012

Imagine… What it’s like to Have Meniere’s Disease

You know it's funny. When I tell people I have Ménière’s Disease they usually respond by saying, "what's that" or "never heard of it". No one has ever asked me what it's like to have Menieres. If they did I would describe it thus.

Imagine that you have one blocked ear. Feel that sensation. Sense the fullness. Strain to hear the haziness of muted sounds. Feel what it's like not being able to hear in an ear.

Now imagine that in addition to the blocked ear, a couple of crickets have somehow crawled into your ear & are making a constant white noise. Hear it? Hear the shhhh, buzzing or hissing sounds?

Now imagine that as well as the blocked ear & the crickets, you have a head cold or you’re just a little hung over so everything is a more complicated than usual. You feel mentally and physically drained, and need more time to accomplish the simplest of tasks. Light might affect you more. You might start bumping into things and have trouble thinking. You might even feel that it's unwise to drive. You feel it? Feel the fogginess?
Now imagine that adding to the blocked ear, the crickets & the hangover you now find yourself on a boat out at sea, rocking up & down, left & right. You look to the horizon to get your bearings but it's moving. So you feel hazy or perhaps nauseous. The waves go up & down; left & right. Can you imagine how that feels? (see video above)

Now to make matters worse you learn that you will likely never, ever get off this rocking boat. That's right.

Now imagine that you are alone on this boat and that all of your friends, family & work colleagues are back on dry land going about their lives with normal hearing & balance; cricket & hangover free (okay, maybe not hangover free). They don't understand what you're going through. Can you feel the isolation?

Now if you are very lucky, one day, after potentially years afloat, the boat you’re on will briefly go back to dry land and dock at a port called Remission. There you will have a chance to stand on solid ground, hear blissful silence, feel unblocked ears & experience hangover-free clarity of mind. And you know what that will feel like? Pure, unadulterated heaven.

While in Remission you will radiate from the sensation that everything good on this earth has been rolled up into one awesome, life changing, musical inspiring experience. For a few weeks or months you'll rediscover your smile, every breath will invigorate you, and everything around you, including the previously banal, will glow will be unabashed glory. Can you even begin to imagine that??

A sense of peace that comes from just the simplicity of good health, one you’ve likely never even noticed before, will come over you and suddenly life will be bathed in hope & optimism for the future... until, one day, you begin to notice your hearing going and the blocked ear coming back. Within days the crickets are chirping again, and before you know it you're on that boat again, alone, heading indefinitely out to rocky seas with no knowledge of when, or if, you will return to port. Now, can you imagine it? Feel the loneliness, disappointment & uncertainty of your future? It doesn't feel great.

That's one example of what it's like to have Meniere's Disease, and that's without describing the addition of random vertigo attacks. I'll save that description for another cruise.

HOW WOULD YOU DESCRIBE THE EXPERIENCE OF MENIERE’S DISEASE? Please share your experience in the comment section below.


  1. Replies
    1. Thanks for the feedback Karen.

      I hope your Meniere symptoms improve.

  2. I am not sure there is enough room for me to describe my life with this Syndrome. I think that it is becoming more accepted that this is a syndrome not specifically a disease. This is in part because of the variety of factors involved and no single point of origin. I have had Meniere's since age 12, I am 45 now. As a child I had Violent episodic verigo. I also had pulsing and crunching noises in my left ear. I am Bilateral now. All of the GP's I saw tried to treat this as either anxiety or ear infections. As I got into my teens this went away. It returned at age 20. My first trip to a real ENT ended having me official diagnosed however the only thing he did was prescribe medication and pass me a bill. He never explained the illness at all. At about age 23 things peaked. I had nightmare type vertigo attacks. I could not leave the house. I could not drive and it seemed as if no medication would help. The only thing that ever even put a dent in the symptoms was prednisone. That however was always short lived. My left ear seemed to be the main ear effected but again I am bilateral with this now. Over the years I have enjoyed some relief from the symptoms. The vertigo is not as frequent or violent. I can drive now and I don't have a phobia of leaving the house. What I do have is a loss. I lost my ability to do what I enjoy, Music. I also have no directional hearing. I can't locate anything based on hearing. Since age 23 I have persistent tinnitus , especially in the left ear. I listen to basically the loudest Jet engine on earth 24/7. Its tough to go about my daily routine. Its hard for me to do my job, many times I have to cancel meetings because I can't hear.

    1. Hi Christopher,

      I read all four of your comments on my blog and was touched by the struggles that you have had to endure.

      I encourage you to join the Meniere's Australia Support Group on Facebook as there are many wonderful & understanding members who can support you.

      If you don't have a Facebook account I urge you to set one up just for this purpose. It will be worth it.

      You are not alone.

      Best wishes,

      Beatrice :-)

  3. I have seen 14 ENT's finding only 2 that understand the problem. Both have told me point blank I know as much as they do. I too have researched for years. I am at the stage now where I am 90% deaf more than a quarter of the year. I am 60% deaf the remainder of the year. I have asked for implants. I even asked for 1. I have gotten a lot of flack from those in the deaf community because I can "sometimes hear" What I find is a majority of the deaf community has a chip on their shoulder and are a waste of time to deal with. My insurance, my current specialist and all involved only want to try and treat the good ear. To me that is flat wrong. "well you have one good ear" It makes me angry as hell. So Doctors and insurance companies basically put a cap here. Only acting if you loose it all, and that in itself is a big maybe. There are some new treatments that involve injections of steroid drugs directly into the ear. That I have to admit I have not had the opportunity to try. What I want is this noise to go away. What I want most of all is regular hearing. Implants could make that possible but that will probably not happen. The list of mediations I have tried is very long. It includes the standard battery of diuretics vasodilators non steroid anti-inflamitory drugs, Cert Betahistine Benzodiazapines antidepressants, vitamins and various herbs and other tricks. None of it works. I live a salt free, alcohol and caffeine free diet. Sugar and stress, those are hard but I do the best I can. I have joined groups, and message board related to meniere's and it always came down to 2 things. Folks throwing a pity party describing their own personal version of hell or those that were just for support. I never really benefited from any of that. If I sound frustrated , I am. I have battled this for so long now.

  4. I have maintained an optimistic and positive attitude and endured much along the way. From incompetent doctors that say Children don't get this disease to the cold hearted expert that makes an assessment in 90 seconds ( Duke University by the way) and decides a 1960's style treatment is a solution, standard battery of drugs and shunt. My response to that was your fired.... LOL. I I have found that this runs in my family. There are some folks in Ohio, as we speak researching the aspects of genetics and Meniere's. My grandfather never had this, but all 3 of his brothers did. There is also some recent research related to circulatory issues in the tissues surrounding the inner ear. All of these are interesting but not a cure nor a solution. I think all along the approach has been flawed. Its not a single simple disease. Its a syndrome that can occur for a variety of reasons involving many factors. I hope you find some answers. I hope you don't go through what I have had to endure. Again I am generally very optimistic but my batteries have about run out. In no way does it mean you will go through the same but one thing is for sure, I know how you feel and I know exactly what your going through. I have and still do live it every single day.

    1. Hi Christopher,

      I can see your frustration. I know it well.

      You’re right this is not a simple disease. How nice it would be to have one of the more common conditions (diabetes, asthma, etc) so we could be presented with well-trialed & funded treatments; and everybody would have some understanding of our challenges. Bliss!

      But alas, we have Meniere’s Disease, which (let’s face it) is a Mother****er.

      Thank you for your support for my situation. With 7 Billion people in this world, it’s a situation that around 7,000,000 share (based on 1 in a 1,000 people). So we are definitely not alone in this.

      Thanks for sharing your story. Stay positive :-)