Living with Menieres

 

Brain Fog as your brain just gets weary of compensating for the poor signals coming from the ears

Meniere’s can logically go through three phases according to the medical text books, though nothing is predictable with this terrible disease.

It starts off with sudden and unpredictable, debilitating vertigo attacks lasting many hours but as it goes through stages 2 and 3 then the problem shifts as vertigo attacks decrease but your hearing and balance can be significantly reduce.

The classic three phases on Meniere’s as described in the medical text books. Real life is not so clear cut

Meniere’s gives and takes both at the same time.

Meniere’s givers and takers

As in this poster from the Meniere’s Awareness Project.

My thanks here to Gray Bostick for giving such a vivid description of what it’s like to live with Menieres:

“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 those that don’t, the nosy ones primarily looking for gossip fodder, are often even more entertaining.

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.

Loss of coordination – I also have 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.”

Balance Awareness Week, 2017