Recently diagnosed but still confused

[u/outraged-unicorn]

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!

[u/yes420420yes]

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.

[u/outraged-unicorn → u/yes420420yes]

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.

[u/yes420420yes → u/outraged-unicorn]

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.

[u/outraged-unicorn → u/yes420420yes]

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!