Meniere’s Disease: A Misdiagnosis

This has been such an exhausting (and expensive!) journey, this journey into my health issues – seeing doctor after doctor, doing test after test – at least one per day – and what have I learned? We must be our own advocates.

I had a flight in December and my body never regulated. Afterwards, I was functional, yet had a steady stream of motion sickness that never abated. I became clumsy, dropping things, bumping into things, stimulated visually so that I could no longer look at a computer screen and scroll – I could no longer work, I’m a writer and a reader – or be a passenger in a vehicle, or look at cars driving for that matter.

One brain scan later and my blood panel cleared, I saw an ENT who referred me to an audiologist, who did a bunch of hearing tests on me. They found excess fluid in my left inner ear, which sent me back to the ENT for a diagnosis. This ENT spent five minutes with me before diagnosing me with Meniere’s Disease. She put me on a water pill and a low sodium diet of less than 1000mg/day (and if she’d looked at my records, she would have seen that my sodium was already on the lower end and didn’t have too far to drop), and I ended up worse than before, my vertigo 5X worse, and in the ER.

Now, I never needed low sodium. I never needed a water pill. Because, guess what? I don’t have Meniere’s Disease.

I’m lucky, truly, because my best friend is an audiologist and was pissed at my diagnosis and my plan of action set by this ENT. She said, “You don’t fit the symptoms.” And I don’t – true Meniere’s patients lose their hearing (I have excellent hearing), they have episodes of vertigo that are debilitating, not a steady stream of motion sickness, like me.

I got a second opinion. Went to an ENT who spent time with me, who listened to all of my symptoms, who took notes, and he diagnosed me with Labyrinthitis, an inflamed balance organ (now, this diagnosis was still wrong, but at least it wasn’t a lifelong disease). He wanted to get a better look at my brain scan, so we did, and the scan showed that I have a tiny cyst on my pineal gland. Now, most people don’t have symptoms with these types of cysts, but those that do, have mine. So I was worried, worried I would have brain surgery on a cyst living in the center of my brain, but the neurologist cleared me, saying he was positive my symptoms weren’t from my cyst and no neurologist would touch the cyst with a ten foot pole.

Great.

But I’m still going to imagine that cyst disintegrating while I meditate, blast that cyst to pieces with my mind and my breath and visualization.

Now, this new ENT put me on steroids and sent me to vestibular therapy. He also wanted a specialist to take a look at me because I was a “tricky” case. So that’s where I went today, to an inner ear specialist, a Meniere’s specialist, and this specialist listened to my symptoms and immediately shook his head, rolled his eyes, and said, “You don’t have Meniere’s Disease. What you had was one flight too many.”

He told me what I already knew, that my body never stabilized after flying.

“It happens,” he said. It’s this huge long word that starts with an M. And he said, “Of course you ended up in the ER. You don’t need meds.”

So I don’t need meds; I won’t go deaf; I don’t have a chronic, life-long condition; I won’t always be dizzy; I won’t always be nauseas; I won’t always be land-locked; I won’t always be clumsy.

So what’s the cure? Vestibular and vision therapy, which I’ve already been doing, and it’s been helping – I can drive now, but I still can’t be a passenger; I can scroll; I can read; I can work (yes, only for brief periods, not full days, but it’s still work).

So why was it so fucking hard to get a proper diagnosis?

My best friend said that ENT’s misdiagnose people with Meniere’s Disease all of the time, and had I not had her to tell me to investigate further, I may still be spinning on water pills and fatigued with low sodium, debilitated.

So today was a good day. I got incredible news. I’m regulating. I’ve still got a long road ahead with vestibular and visual therapy, but this will not be, is not my life.

So thank you, friends. Thanks for taking this journey with me. Thanks for sending me your love and support. And those that checked in with me the week my husband was out of town and I was reeling from low sodium and an adverse reaction to the water pills – thank you. Really, truly. And, as always, thanks for reading.

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4 thoughts on “Meniere’s Disease: A Misdiagnosis

    1. yes! what is terrible, though, is that at least i work from home and can fit all of these doctor’s appointments into my schedule, but those that don’t have a flexible schedule – what do they do with a misdiagnosis? so crazy. and so challenging to finally be able to see the specialist.

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  1. This is encouraging and I hope my outcome is a positive as yours. I’ve been battling with dizziness for about 4 weeks now. I was initially diagnosed by an ENT as having Labyrinthitis following an incident of dizziness, tinnitus and a clogged ear. He assured me that my dizziness didn’t fit the description of vertigo and that he was confident it was not Meniere’s. After an audiogram showing I had mild hearing loss in my upper frequencies (only at 1kHz), I was prescribed Prednisone and sent home. For the next two weeks I was consistently off balance when looking at computer screens or TV, of when changing position too quickly and my ear remained clogged this whole time with fluctuating tinnitus. Went to the follow-up with the same doc, and my hearing had improved drastically but I still had a slight dip in my upper frequencies. I was given no other treatment at this point except told to start taking walks and to return in 3 months. Unfortunately, a week later while using the computer I became extremely dizzy. Enough that I had to lay down. However, I had no spinning sensation, just a feeling of a lack of balance, tinnitus and muffled ear. Diagnoses? Meniere’s disease. And now it’s like he disregards all of the other symptoms I have: dizziness when looking at screens, when in vehicles, when bending over forwards, dizziness for 4 weeks, not just in a few isolated instances, etc. I don’t know what to think, though I do plan to get a 2nd opinion. At any rate. Thanks, as your post, albeit you experiences differing, still gives me hope that he may be wrong.

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    1. my goodness! take care of yourself. and, yes, get a second opinion or a third or a fourth. i have found that dizziness and vestibular disorders are extremely difficult to diagnose properly. i’m in vestibular therapy and it is helping. that might be something to look into. good luck!

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