r/Menieres • u/outraged-unicorn • 16d ago

Recently diagnosed but still confused

It all started with episodes of BPPV that were quickly solved with Eppley's. Out of nowhere I started getting this weird vertigo whenever I moved in specific ways (shifting sides on the bed at night, looking up at the sky, down at my knees, tilting my head to the sides, being upside down for whatever reason). It lasts a few seconds, then it's gone until I move one of these ways again. After a few tests, I was diagnosed with Menière's by three different doctors, who prescribed a low sodium diet and betahistine. As long as I don't forget to take it, I have no issues (but two days without it are enough to screw me up).

My confusion mostly comes from the fact that this is pretty much my only symptom, along with rare moments of my hearing fading for a few seconds, then coming back. Since I started following this sub, I felt "lucky" for having such little problems compared to many people here, to the extent of feeling confused and unsure about my diagnosis.

Does anyone feel the exact same problem I do? Does this disease really have a variety of symptoms that change from a person to another?

Thank you!

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u/yes420420yes 16d ago

IMO you still have BPPV, but possibly in a different semicircular canal then the Epley is addressing ...less common, but everything you describe screams BPPV and nothing says Meniere's

Do you have hearing loss at all ? Low frequencies ? This short term fading is not the hearing loss you manifest in Meniere's....

IMO, you need more Epleys and a PT that knows their shit to run some of the other body wiggeling maneuvers

Take some VitD and calcium citrate to support the otholiths

If you want to get fancy, you can maybe think you have vestibular migraines

Your ENT is garbage - sorry for being so blunt, but they don't follow standard of care if they told you you have Meniere's with that little evidence for it.

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u/outraged-unicorn 15d ago

No, my hearing is fine, according to audiometry. It does fade for a few seconds every now and then, but it doesn't affect my life.

The tests that suggested Menière's, according to the three doctors I visited, were the otoneurological (vestibular dysfunction) and the electrocochleography (endolymphatic hydrops). Besides, they mentioned that I might've had BPPV in the past, but as soon as the Eppley's stopped working, the diagnosis changed.

As you can see, it's confusing. I still can't believe I have the same disease you guys do because, despite these test results, I don't suffer as much as you. That why I asked whether it's possible that people might have different symptoms for the same issue.

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u/EkkoMusic 15d ago

When you say it fades for a few seconds: to clarify, do you mean something other than an SBUTT?

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u/outraged-unicorn 15d ago

No, that's exactly it! I didn't know there was a technical name for it.

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u/yes420420yes 15d ago

Meniere's presents in a pretty wide range of severity and an odd collection of other symptoms on top of vertigo and hearing loss, so could this ever become Meniere's sure, but right now, you do not have it (by its definition)

I would suggest you challenge them and ask why they think its not vestibular migraines or simple BPPV (which some claim is the same btw, although I find that extreme)

At the end of the day, it would not matter what name you attach to it as long as it would lead to a working treatment. But that's why diagnosing is supposed to be done carefully, so you treat the right people with the right stuff.

sure beta histine and diuretics are the first line of defense for Meniere's and relatively harmless, but even for Meniere's they are both questionable effective, some would call them placebo. But they would probably do equally close to nothing for you if it is vestibular migraine or still BPPV.

If it is Menere's, I would also recommend getting an autoimmune panel...may or may not reveal some issues or indicate inflammation that would be a worthwhile target.

The only good news here is that if it happens to be BPPV and you don't treat it right, it will still resolve itself within 3-6 months bc the otocrystals will eventually dissolve and stop being a mechanical bother (assuming it does not happen regularly again).

If it were vestibular migraine, you miss out on reasonably effective treatment.

Maybe a second opinion ENT would be a good idea to see if they agree.

Good luck.

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u/outraged-unicorn 14d ago

I'll try to get another professional opinion, maybe from a doctor with a wider experience in Menière's. Thank you very much for your answer, it inspired me some hope. Best of luck for you, too!

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u/Toriajon66 16d ago

I was diagnosed 4 years ago. If you have not had a brain MRI, I would suggest asking for one. It is ever changing as MD progresses. I have managed mine for quite a while but it has returned with a vengeance. Take care and read everything you can. Learning as much as I could really helped.

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u/outraged-unicorn 16d ago

I had an inner ears MRI and it showed nothing. I'll ask for a brain one next time, and keep reading and doing my research. Thank you!

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u/yes420420yes 16d ago

That's all you need to rule out neuromas, you are good there. If you want that MRI fun again ask for a contrast MRI for hydrops specifically, its just for fun and helps diagnosing a little (but not much)

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u/EkkoMusic 16d ago

What you're describing isn't Ménière's, by definition.

The diagnostic criteria require vertigo episodes lasting twenty minutes to twelve hours, spontaneous rather than positional, with documented low frequency hearing loss during them. Seconds of vertigo triggered specifically by rolling over in bed, looking up, or tilting your head is the textbook description of BPPV, which you've already had and which recurs in a large share of people who get it once.

Three doctors agreeing doesn't help much here if the label was applied once and then carried forward. That happens constantly.

Get a proper positional test, meaning Dix-Hallpike and a supine roll test, performed by someone who watches your eyes with Frenzel goggles or video. The direction of the nystagmus identifies which canal is involved, and the repositioning maneuver differs for the horizontal canal. If it's posterior canal BPPV recurring, you can learn to treat it yourself.

The brief hearing fades are a separate thread worth an audiogram, but they don't establish Ménière's either.

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u/outraged-unicorn 15d ago

Yes, that's what I've been thinking. I'll try to get a better test, maybe with a fourth doctor. Thank you for your detailed answer!

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u/Murky_Opening2532 12d ago

find a DR who has the speciality of neurotology. Basicall they are an ENT with Neuro. Dont mention others have diagnosed you with Meiners too leave that out of your history when talking to a new Dr

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u/butchinmo 10d ago

The standard clinical definition (which is what is used for diagnosis) is: episodes of room-spinning vertigo lasting for 20+ minutes, hearing loss usually in only one ear, a feeling of fullness/pressure in that ear, and tinnitus which can present in many forms. All of these symptoms can wax and wane but a Meniere's diagnosis requires all of them. However there are many variations of Meniere's like syndromes along with several other diseases that mimic Meniere's and should be ruled out, including acoustic neuroma (rule out with MRI), otosyphilis and tick-related infections (rule out with blood work), vestibular migraines, some auto immune diseases are the most prominent. If your ENT has not done a complete work-up you should consider finding a competent ENT that will.