What it’s like to have Meniere’s disease

menieres-disease symptoms

(An explanation of what Meniere’s disease is. I seek no sympathy; I will be fine…there are others facing much direr and darker days. But AWARENESS about this life-altering disease is a critical first step to finding the cure that so many pray for daily.)

What is Meniere’s disease?

It seems hardly a day passes without someone bringing up my health, either checking on how I’m doing, or, in some manner, asking me – often for the second or third time – “What’s that ailment you have again? Meniere’s disease? I’ve never heard of that? What is it, ’cause you look OK…”.

It’s truly a blessing to have such friends, folks whom I know care deeply about me and my condition.

And by God’s grace, most days I do look “normal”, and I’m very grateful to hear “Well, you look OK,” and most days, I am…I’ll be able to enjoy a fairly normal life, doing things like others–perhaps a bit slower and with more forethought and deliberation than others, or me in a previous life–but doing them nonetheless. I’m lucky; others with Meniere’s have far worse days, far more frequently, often leaving them bed-ridden, unable to drive or tend to themselves, or, to a large part, live independent lives.

But before you judge someone with Meniere’s based upon a the “good” day you see, you need to understand what a normal Meniere’s disease day is like.

Tinnitus – Imagine having an alarm clock ringing, a bee buzzing, a million cricket symphony chirping, or a jet engine roaring in your ears continually for a long period of time. NON-STOP. You have difficulty hearing anything over that alarm or bees or crickets or engine roar – it drowns out almost everything else. And it NEVER stops; it’s as constant as the passing of time – and according to most doctors, it probably won’t stop until your heart does, until your time has come, at death.

Deafness – While playing havoc with your balance and equilibrium, Meniere’s also plays games with your hearing. And hard-ball, at that. It deafened me in my right ear within a couple months, and the “good” left ear is fading. It wouldn’t be so bad if the hearing loss was constant and predictable. But oh no, that’s be too simple to accommodate, thanks to Meniere’s one day I can hear conversation fairly OK, and the next I can be virtually deaf, then the next day I can hear a little again. The hearing loss can fluctuate, but is usually progressive and permanent, and, over time, many with Meniere’s end up deaf.

Ear Fullness & Pressure – Ever been going up a mountain or lifting skyward in a plane and have your ear pressure build up, so you hold your nose and blow slightly, maybe even chew gum, to equalize the pressure for relief? Good…now imagine a deflated basketball being placed inside your ears, then slowly inflated until just before bursting…then being deflated and re-inflated again. And again. And again. And there is nothing, NOTHING you can do about it.

Vertigo – Imagine yourself as being really drunk, and having the flu, and trying to walk a high-wire, at the same time as the alarm, bees, crickets and jets are roaring in your ears and they feel as though they are about to burst. Now imagine that with these happening, you got onto the Tilt-A-Whirl, an amusement park ride that spins you in different directions, and up and down — at the same time. That, multiplied by about a thousand–maybe–is classic rotational vertigo. And I have no choice in feeling these sensations. THEY decide when and where and for how long…and if the cause is severe enough, then we get to enjoy a…

Meniere’s attack – During one of these violent vertigo attacks, which can last from several minutes to several hours if not days, I’m reduced to basically just being alive. I can’t keep food or water down, sometimes I can’t walk or even open my eyes, movement only makes me sicker, and, with my brain sensing that I may have been poisoned, I’m covered in sweat from my body trying to flush itself and totally exhausted . And recovery from one of these attacks takes days, mostly spent resting.

But those are only the PRIMARY symptoms of Meniere’s disease; the fun doesn’t stop there. You also have problems, daily or from out of the blue, with:

Balance – Even on a daily basis, your mind is so confused by the signals it’s getting from your ears that your balance sucks. Your stay bruised because you bump into things constantly because you can’t balance well enough to avoid walking into them, or your mind is telling you the object is a couple of inches from where it really is. I don’t know whether to laugh or cry when someone teases me about being such a klutz. The imbalance can be so noticeable that some with Meniere’s are assumed to be drunk, and I wear a med alert bracelet and keep paperwork in my car just in case I have to explain to a LEO why I am so unsteady, just as I do to show an officer that I’m not ignoring his commands, it’s that I can’t hear them with road noise overwhelming my ears. 

Crisis of Tumarkin (“Drop Attacks”) – Originally described in 1932, a Crisis of Tumarkin (also known as a “Drop Attack”) is a rare but frightening presentation of Meniere’s disease. Medical dictionaries define the Crisis of Tumarkin as a “sudden unexplained fall without loss of consciousness or vertigo, attributed to abrupt change in otolithic input, resulting in an erroneous vertical gravity reference which, in turn, generates an inappropriate postural; adjustment via the vestibulospinal pathway, resulting in an immediate fall.”

I define it as abruptly falling like a sack of potatoes, without warning. And one of the most frightening feelings I’ve ever experienced — and having had a few, you live in constant fear of when, where, and how damaging the next one will be. 

Loss of coordination days that my coordination just doesn’t seem to be together. I’m carrying something and all of the sudden I drop it because my brain seems confused as to whether my hand is really attached to my body. I sometimes miss a step and fall because of the feeling that my legs are not quite part of me and I have to focus on them to realize they are there. Apparently this happens because the part of your brain that recognizes parts of your body as belonging to you is the parietal brain lobe and it sits right above your ear, so if the nerves around your ear are inflamed, as they are with Meniere’s, it can press on this part of the brain, or send the wrong signals to it, and – Presto! – you lose basic coordination.

Hyperacousis/Hearing Sensitivity – Ironically, the few high frequencies I don’t seem to have a hearing loss in now sound extremely loud, to the point of being unbearable, forcing me to wear ear plugs anytime I’m outside my home. A baby crying, eating utensils being tossed into a sink, ice cubes being placed into glasses or dishes being washed, a car horn blowing unexpectedly, or a microphone giving off feedback, even a bird chirping loudly, will have me willing to climb a wall to get away; I often flee an area immediately when sounds overwhelm me. This inability to tolerate everyday sounds that others hardly even notice is called hyperacusis…and it is a misery you wouldn’t wish on your worst enemy.

Vestibular Migraines – Often described as “sick headache,” vestibular migraines are typically characterized by the unilateral onset of head pain, with a severe progressive intensity of pain, throbbing or pounding, to the point of interfering with a person’s routine activities. Accompanying symptoms of diminished eye focus with photosensitivity and photophobia (sensitivity to/fear of bright or flashing lights), or phonosensitivity (intolerance to noise), as well as nausea and/or vomiting, are common, and often lead to one being incapacitated and the resulting inability to perform even simple tasks.

Vision Problems – The disease also plays tricks on your vision. For some strange reason, the nerve that goes from your inner ear to your brain also controls some of your eye movement. Your eyes can twitch or bounce constantly, making focusing on objects, much less print, extremely difficult at times. Your eyes seem unable to “track” movement at the same speed, giving you blurred, or even double, vision, along with a bad headache.

Brain Fog – You can get confused easily and your memory and concentration aren’t reliable. Many Meniere’s sufferers were originally afraid that they might have a brain tumor or Alzheimer’s because it can sometimes gets so bad. Finally they either find a doctor who is very knowledgeable regarding the symptoms, or they happen to ask someone else with the disease, and find that this too is a common – and infuriating – symptom of Meniere’s.

Physical Impairment – Some days you feel as though you weigh 1,000 pounds and are walking through knee-deep molasses, while another morning it might seem that you’re almost weightless, barely touching the ground as you walk. Or it may feel as though your shoulders are being squeezed together, while your elbows seem to have an inch of spacing in the joint, and you have no touch at your fingertips. An extremely frustrating circumstance, but understandable given the vestibular system’s important role in providing the human body with these senses.

Fatigue – Because your brain is the human body’s biggest energy “consumer” – and thanks to Meniere’s, it’s constantly getting mixed signals to decipher, and, in effect, is working overtime, almost all of the time, straining to reconcile all the external factors that suddenly don’t make sense and realign itself in space, relative to where your vestibular system is telling your body you are versus what your vision is relaying. And once your vision is removed from the equation, the vestibular system goes into panic mode and you quickly exhaust your energy reserves. Taking a shower, where you have to close your eyes, are exposed to temperature extremes across the entire body that your brain is having to assess, almost always requires a brief rest afterward, which can be maddening beyond belief.

Now take a few moments to try to imagine living with this disease, sounds roaring in your ears 24/7, never knowing when one of these periods of nausea, vertigo, migraine, hearing loss, blurred vision, lack of coordination, recruitment, hyperacusis, disequilibrium, or “brain fog” is going to hit, how bad it will be, or how long it might last. At least with being drunk or riding an amusement park ride, you know what’s causing it, and you can make the choice not to do it again. With this disease, there’s very little warning of any for these attacks, you don’t know what’s causing it, and, most dishearteningly, there’s no cure–only devices, surgeries, and some medications that can somewhat alleviate and help you cope with the symptoms.

And weather, the one thing no man can control, is often a major trigger. Anytime the wind blowing or storms brew up or fronts pass thru the area, your body is affected. And you just have to wait to see how badly and in what manner…and on the rare occasion, a storm WON’T affect you.

Understandably, for many sufferers Anxiety and Depression seem to go hand-in-hand with Meniere’s, primarily the result of the unexpected nature and severity of attacks, as well as the uncertainty of the future. We often ask how much worse can this disease get? Well, the fact is it’s progressive, so who really knows? But they now think that the famous artist Vincent Van Gogh suffered from Meniere’s, leading him to cut off his own ear trying to escape its symptoms. That’s how bad it can get. And for some strange reason, doctors aren’t especially talkative about worst case scenarios; it must be the high suicide rate that backs them off.

Now, given these factors, do you think a Meniere’s sufferer would be able to do the same things as you on as punctual and regular of a schedule while dealing with all these unknowns? For me, there’s no choice…and no way. I have to be upfront and honest with myself about my limitations, but I try the best I can at living up to my full potential. Could you if you were in my shoes?

So yes, on my not-so-bad days I may look like a totally healthy, able-bodied person. You may even ask me, “Why can’t you bend down, pick it up, lift or carry it?” Just understand that its because I know these things can either bring on an attack, or I couldn’t do them properly and on a regular schedule, or that if I did do them, I could possibly put myself and others in jeopardy if I should have an attack.

I hope you realize that with my friendship, dedication, and loyalty comes the fact that I don’t get to decide when I’m going to have a bad day–or when a “good” day will suddenly go terribly bad. And the more stress I’m under, the more likely I will have a bad day. And trust me, I’d rather have my fingernails removed than to have even one more attack.

So, if you see me hurriedly leave without goodbyes, or fail to acknowledge something said to me, or have to cancel at the last moment, please understand. Some days it’s just more Meniere’s life than my own. Some days it wins. But we still battle on. Every day.

Just please don’t judge me unless you’ve walked in my shoes.

19 thoughts on “What it’s like to have Meniere’s disease

  1. Brilliant Article can completely relate to all the symptoms.was diagnosed 1993 then went into remission until 5 years ago since then I live day by day has been bad this last year with the death if my husband this has been.due to stress. Medication does not want to know about or does not understand it.We have to live with it.

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  2. Fantastic article and correctly written, wonderful metaphors for newbie Meniere’s warriors and those who have no clue about this disease! Bilateral from the start and an early meniere’s warrior @ 24, now 50 and have been deaf bilaterally for the past 14 yrs! Thank you I very much enjoyed reading this and hope you have more better days than not!

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  3. This is a really great, well written description of everything we deal with. I am coming off the worst Meniere’s attack I’ve dealt with that hit me last night…violently vomiting in a grocery store parking lot as my wife drove us home with my kids in the back. I live in fear of going bilateral. I bookmarked this to share with others and help spread awareness. Stay strong.

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  4. Thank you very much for this wonderfully astute article. You described Meniere’s Disease very accurately. This is the life for many of us. I have bilateral Meniere’s Disease. My first symptoms happened when I was a child. My first major attack happened when I was 27. I had severe vertigo everyday for eight weeks. It put me in a wheelchair for that time. I did have a remission for a few years, but MD came back. My hearing is much worse.

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  5. Gray,
    Thank you for very much for your article. I think you covered all the symptoms of Meniere’s….I have had all but the Drop Attack.
    I continue to pray daily for a cure.
    Bonnie C. Freeman

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  6. Thank you for this! I also have this crazy disease. You have explained this perfectly. I often refer friends and loved ones to this page to try to understand what is going on.

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  7. thank you for having the courage to write this – I’ve tried for so long to express what it is and does to me so other would hopefully understand a bit better and couldn’t find the words. I hope that you don’t mind if I share them. Peace and stillness to you

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  8. Well described Gray. I’ve often referred people to “official” web links for information, but I’ve copied this link and will use it for the human side of Menieres. We all have different journeys with this disease, but adopting a positive attitude, (I laugh when people see me stagger and make assumptions), being grateful for every day that want as bad as the last, has kept me sane. Your symptoms are much as mine, but in my 20+ year journey, I have had a couple of wonderful periods of remission, while still aware that every day could see its return. You stay well friend, and remember, those who understand are worthy of friendship.

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  9. Gray you have nailed it. Something as small as a little too much fluid in the inner ear can ruin a persons life, career, marriage, and in some cases willingness to want to go on with life. I have had all of the symptoms you described other than the migraines but as you know, I have maintained my sanity, sense of humor, and dignity. I have accepted Meniere’s as part of my life and I refuse to let it beat me. As much as I have inspired you, I must admit that you have been an inspiration to so many. It makes me proud to have you as a friend.

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  10. Thank you for this. I also have Meniere’s and have shared this post with family to help them understand. Question: What does your Med alert bracelet say? This is such a good idea and I want to get one also. Also, what is the helpful paperwork is it that you keep in the car?

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    • Jacqueline – Thank you for your comments. I’m not at home at the moment, but if you’ll send me an email address, I’ll send you info on the visor placard and the med alert bracelets. My email address is: GrayBostick@gmail.com Thank you; have a pleasant and safe Sunday evening. – Gray

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