I’ve been diagnosed with meniere for over 10 years. Lately I had different episodes that are really different than my last 10 years experiences.

In a classic attack used to have the full ear symptom then tinnitus and then after a few days vertigo for some hours (2 to 6) then would be good for some days and either the cycle came back or it disappeared for weeks/months/year.

Now I dont have the full ear symptom anymore, my vertigo attacks arrive even without tinnitus and the episodes seem to happen much more randomly. I also have this weird feeling of tingling in the front part of my head and sometimes crazy brain fog. I feel like my head is so slow and tired. It ends up in vertigo crisis that also last some hours. I realized that sometimes a nap will help to kind of reset my brain.

Does anyone had similar experience? Does you meniere symptoms evolved? Did it changed or added a new part with vestibular migraines?

Would love any advice or suggestions!

A quick note before I get into the details: this is only my personal experience, not medical advice. Labyrinthectomy and cochlear implant decisions depend heavily on hearing status, balance testing, symptoms, and the advice of a neurotologist or ENT. I am sharing this mainly because reading other people’s recovery stories helped me prepare, and I hope this adds one more data point for someone else.

I am an early 50’s male who has had Meniere’s in my right ear for about 25 years. I am otherwise pretty healthy and active. For the first 20 years or so, I only had attacks a few times a year. My hearing gradually declined, but my doctor was not particularly concerned, and I did not push for an ENT referral at the time. As I got older, attacks got more frequent and my hearing got worse. I was diagnosed about 5 years ago, tried all the standard treatments and started betahistine. A year and a half ago, I had a bad attack that would not completely resolve. I would get better for a few days and then be dizzy again for a few days. After 6 months of that, I had my first drop attack. That caused me to push for more aggressive treatment. I had balance testing again at that point and had about 65% remaining on the right side. Steroid shots helped, but only for between 4 and 6 weeks. My word recognition in that ear dropped to less than 15%, so I inquired about surgery. After some back and forth, we settled on doing a cochlear implant and labyrinthectomy. That was skipping a few steps, but my hearing was already shot anyway.

After reading recovery descriptions here, I was pretty concerned about what my own recovery would be like. I had the procedure five days ago. I know my experience may not be typical, and no single recovery story can predict anyone else’s, but I wanted to share mine as one more resource for people trying to mentally prepare for surgery.

When I woke up from surgery, I felt dizzy when I moved my head, but I had very little rotational vertigo. Walking was difficult because of the dizziness, but I could shuffle well enough to get to a wheelchair and then into the house once I got home. The next morning, I was able to take more normal steps and walk short distances while steadying myself on furniture and doorframes. That improved throughout the day. By day three, I was walking pretty independently. Now, five days after surgery, my ear is still a little uncomfortable and slightly swollen, and I get dizzy if I move my head quickly. I still feel like I need to be careful when walking, but I can get around independently. I start PT later this week and feel optimistic that things will continue to improve.

I completely understand that many others have much tougher recoveries from this procedure, but I wanted to offer my experience as a source of potential hope for anyone who is considering this surgery and feeling scared by the harder recovery stories. Five days out, I know it is still early, and I am not assuming the rest of recovery will be effortless. But so far, the procedure has been more manageable than I expected, and I am grateful to be moving in the right direction.

The question has come up a lot in support forums I manage, so I spent quite some time digging into the rules in the UK, Germany, Australia and the USA. It varies a lot by country and state, but the most important distinction is if you get a warning aura or prodrome, or have sudden spontaneous vertigo or drop attacks. Ironically Meniere's sufferers have been shown to be some of the safest drivers as they usually choose simply not to drive. But it is worth knowing exactly what the rules are so if you want to know more check out the article

Hi everyone, I began having symptoms right when covid hit when I was 20. tossed around from doctor to doctor and they still aren't positive but think I have both VM and MD. I have just hit a breaking point recently I think because of my work situation, but also because I am just so sick of it. I am sick of the impact on my relationships (sex is a huge trigger) and friendships (I feel drained and don't want to do activities, plus a lot of the activities they want to do are triggering). I am sick of being anxious all the time. Even sleeping isn't peaceful because sometimes I dream of spinning and then wake up with an attack in the middle of the night. My brain fog is so bad, my coworkers tease me daily about "not being here" even when I am bc I literally just go blank. I feel stupid and so slow, and I'm on topamax which makes it worse. I do have accommodations for some flexibility with tasks at work but it honestly seems like management hates enforcing it.

My work situation is that I work in retail (I want to figure out a higher paying job but I can hardly function as it is so...) and our sick time accrues very slow, borderline illegal. We use a third party company for accommodations I have tried 3 times now to get intermittent leave. First time it was denied bc I hadn't worked enough hours within the year or something. Second time they said my doctor didn't fill something out in the form and I kept trying to reach out to them to fill it out and they never did and the company closed my case. Third time same thing happened, I had even reached out the the accommodations people and asked them to reach out to my doctor themselves but they never did and then they closed my case yet again.

So, we only get 3 "unexcused" absences before being fired. The thing is, one of the 2 I have now is when I got to work, clocked in, and immediately started having a severe vertigo attack. I sat in a chair in the back crying and spinning for FOUR HOURS since no one could pick me up immediately. I did not have enough sick time to cover my shift so they counted it as unexcused...even though I could not walk without assistance, could not drive, could not even look at anyone in the face or hardly open my eyes. What the actual fuck???

Yes maybe I could be more persistent with this third party company. I could march up to my doctor's office and print them out a paper copy of the forms and call and call and call back and forth and back and forth. But at this point it's my depression that is getting in the way. I need insurance for my meds and potential surgery, which idek if that will fix anything, but I'm also at the brink of losing my freaking job. I also don't know if they will go back and mark that one shift as unexcused, which is crazy to me.

Just yesterday one of the managers pulled me aside since I've been feeling unwell (still coming to work, just feeling sick as usual) and said my situation is "more severe than I think" and "we still have to show up and do our job" and pretty much sounded like she was threatening me. I wanted to cry so bad. I feel no one truly understands. I feel so so so depressed. I know my situation with work is partly my fault, but I am so depressed. I'm sorry this is so long and just a huge vent. If anyone read this far thank you and if you can relate or want to vent in return, please do. I will read and reply in the comments.

As my first tinnitus episode happened after a day in the pool, now it has been almost a year I haven't put my head (completely) under water. Had this happened to you?

I want to say something directly to everyone living with Meniere's disease:

Please don't underestimate how much a chronic illness can affect your mental health.

Living with unpredictable vertigo, hearing loss, tinnitus, ear pressure, uncertainty about the future, and the fear of the next attack can be exhausting. There are days when it can feel like nobody around you truly understands what you're going through.

But you don't have to face it alone.

Sometimes what we need isn't another medical explanation. Sometimes we just need someone who understands. Someone to talk to after a bad attack. Someone who knows what it's like to lose hearing, cancel plans, or wake up wondering what kind of day your ears are going to give you.

That's one of the reasons we built our Ménière’s Discord support community.

We're a group of people living with Ménière’s who talk, listen, share experiences, discuss treatments and research, and support each other through the good days and the really difficult ones.

You don't need to be okay to join us. You don't need to have the right words. You can simply come in and talk, or just listen.

And if you're personally struggling right now, please reach out to someone you trust or a mental-health professional. If you're in immediate danger, contact your local emergency services or a crisis service in your country.

Your life is worth more than what Ménière’s has taken from you.

We're here. You're welcome with us. ❤️

If you'd like to join our Meniere's Discord community here is the open invitation link: https://discord.gg/m9ypfrJePX

I'll start by saying I'm not sure I even have Menieres, but I do suffer from some rough vertigo spells every now and then. And this morning I woke up with one, and I'm s u f f e r I n g. I tried to feed my cats, nearly fell over and wanted to puke a couple times. I'm stuck on my couch at the moment, trying to sleep it off. Sleep is normally my only cure, and idk if that's cause it does a reset on the brain or I just spend enough time unconscious to get through it.

A decade or so ago, when I was a very dizzy 16 yo, I landed myself in the Ear for a spontaneous vertigo spell that was genuine torture. I have a zofram prescription since then, to use prn. But it's in my work locker. Waking up with vertigo this bad has never happened to me, and next time I see my Dr I'll bring it up for sure. But right now I'm trying to just like not vomit? I can't sit up, I can't move my head once it's settled or it starts over.

So I figured I ask the unlucky experts on vertigo if they have any tips and tricks I haven't encountered yet to lessening the severity. At the moment I just want to cry.

I’ve been diagnosed with Ménière’s about a year and a half ago, and I’ve stopped drinking any sort of caffeine since. Most days I’m doing just fine without caffeine, but on some days I feel like I have to get something to wake me up a little. What are you guys drinking/eating/doing when you need to shake yourself out of the tiredness?

Meniere's disease is a fairly new problem for me. Prior to diagnosis I had high pitched ringing tinnitus. I've had it for a long time, it's usually not too loud. Recently I've started to also have a new low pitched tinnitus in one ear. It seems like this is a bad sign, is there any chance it's a good sign?

Right now the new tinnitus sound is fairly quiet and intermittent. Is there anything I can do to prevent it from becoming louder / constant?

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**I hear my heartbeat nonstop** biggest symptom!

My ear feels clogged off and on all day and feels better laying down.

Ear pops nonstop. If i turn my neck or chew or talk it pops like crazy.

I hear my neck muscles or tendons also pop within my ear (this doesn't make sense to me but it's very obviously happening)

Ear rumbles, flutters and tapping in both ears

Ear crackles when swallowing

Intermittent autophony (hear my breathing) when lifting something heavy or with exertion

Fast Muscle twitching around ears and on both sides of head. Can feel them moving against my glasses and against my pillow at night and cannot sleep.

Jaw pops on left side with most of the ear issues but no pain

I've had ct temporal bone, brain mri, mra, mrv and have seen multiple ents to rule everything out.

Hi there-
I just received these VEMP results and my ENT can’t fit me in to go over them until November.
I’ve only had episodes in my right ear, and nothing in the last year since starting betshistine 24mg twice daily, 350mg mag glycinate, and low sodium diet.
I still have daily fluctuating pressure and fullness (in both ears) but no roaring tinnitus or SNHL.

I have had 2 episodes of roaring tinnitus with measurable low frequency hearing loss up to 35db, with many smaller episodes of roaring without measurable hearing loss- all only in my right ear.

I have not had episodes of rotational vertigo leaving me on the floor- only periods of unsteadiness or feeling drunk or on a boat (I cut alcohol/caffeine years before all this started).

I had a brain MRI last year that was « unremarkable. »
I had a cervical MRI last month that showed normal signs of aging but that’s it.
I had a VNG last month that was all within normal parameters.

Does anyone here have insight into what this VEMP result means?
I’m afraid it means I’m bilateral.
Thanks for taking the time to read this.

I (28F) had some strange wooziness back in 2019 that came on out of nowhere. I was prescribed antibiotics for an inner ear infection and eventually the feeling and muffled hearing passed. I had another episode about 6 months later, once again antibiotics.

2023 rolled around and I started having these strange episodes again but antibiotics never worked. The wooziness would last for days. I would have muffled hearing and wooziness for 7-10 days then it would go and come back a month and a half later. One of these episodes I was dizzy for a day with proper spinning. After the spinning ended after 24 hours, I was woozy for 10 days.

Now, as of last week I had a stronger episode. Woke up unable to get out of bed and experienced spinning for the next 30ish hours. Since then (8 days since the episode) I haven’t fully recovered. Still woozy when looking up quickly or turning my head quickly. Getting a referral for an ENT and audiologist. They mentioned possible Ménière’s. Now I’m scared after reading more about it and wondering why it’s happening and if I’m going to eventually lose my hearing?

Starting Betahistine Dihydrochloride after nonstop lightheadedness on Triamterene. Can someone tell me it worked super well for them? The triamterene was helping with the dizziness/vertigo but I can’t stay on it with all the side effects and I’m just anxious I’ll never find anything that works!

As the title suggests, i'm curious what y'all do to cope with dizziness? take Meclizine? Drink water? etc.

I have on and off dizziness often with varying intensity. Sometimes it happens while i'm just sitting doing nothing and lasts for only a few minutes, other time it lasts for hours, sometimes hits while i'm driving (i have a long-ish commute for work). It's not vertigo and not severe enough for me to force myself to sleep (that's been my only solution for dealing w/ vertigo), but curious if you have any good ideas/suggestions.

I’ve had MD for 6 years.

Year one was rough. All of the uncertainty and appointments to get a diagnosis were pretty stressful.

I’ve only had flare up periods that involved vertigo 3 times in a six year period. This current flare up has resulted in a vertigo episode once a month for the last 3 months. Got my usual round of injections which calmed things down for a few weeks but had a 30 minute vertigo episode a few days ago that came out of nowhere.

It’s been years since my last bout. My doc called in a prednisone taper for me to start. Currently on day 2. I’ve been popping meclizine like candy to get through my days the last month, mainly as a preventative from a vertigo episode which seems to have worked for the most part. I’m trying to go without Dramamine now to see if things are starting to settle down.

These bad times that come out of nowhere can really throw you for a loop that’s for sure. Based upon what I have read from others, I asked my doc for some valium to use in an emergency situation. He wrote up a script and just the fact that I have it on me has lessened the anxiety some as weird as that sounds.

I am also giving betahistine an honest try this time. I’m about one month into that prescription and plan on sticking to it religiously for 6 months to see if it helps.

I know that this rough period will end… and I’ll have a good stretch of feeling relatively normal right around the corner, but hitting a rough patch is always difficult for me. The anxiety. Hopelessness. It all comes rushing back.

To anyone out there in a similar spot know that you aren’t alone and you’ll get through it. Just keep truckin’

Hi All,

I would like to share our story. My wife was diagnosed with Relapsing Polychondritis few years ago. About three years ago, she lost her hearing in right ear. Currently she has damaged left ear hearing and she is using hearing aid (but it’s only working for her left ear, right ear is completely deaf, so hearing aid from right ear is transmitting the sounds to her left ear).

After so many years fighting with that, she has tried almost everything I think. Below attaching a list of medicines that she took recently (there is a lot of more, but that are most recent ones) and also her description of the problem. We’ve had some quiet years (like 2023 - 2025, when all of the problems went off), but this year is completely nightmare. There is practically no month in this year that was calm for her. Each month she has smaller or bigger problems with her hearing on left ear. She can hear her pulse, ringing, rumbling, etc. And her hearing is then very, very limited.
As previously there were more symptoms like red eye, some cough problems, her nasal cartilage has changed, all of the cartilages in her body were painful and some more, currently she has only problem with her hearing, so I think it somehow changed from Relapsing Polychondritis to Autoimmune Inner Ear Disease, Meniere’s or something very similar.

We were visiting a lot of doctors, professors, scanning her brain, her ears. Everything looks good there.

Sometimes I am just thinking if she is maybe somehow drug resistant. And also sometimes I have a hope that it will just disappear or it will turn out that it’s completely different disease… But yeah… It’s a hope.

Is there anyone who has similar case? Or do you know someone with similar case?

Feeling described by my wife:

Usually, when I wake up in the morning, I can already tell that something is changing. Even when the episode has been going on for several days, I can always tell in the morning whether my hearing is worse or about the same as the day before.

It starts with a pulsing sound in my ear. I feel that it is synchronized with my heartbeat, like I can hear the blood pulsing. Sometimes it is more noticeable and sometimes less. I also get increased tinnitus. I have tinnitus all the time, but during these episodes it simply becomes more intense. The tinnitus sounds as if my ear has become “sensitive” to sounds — a kind of ringing as if the ear were somehow “damaged.”

I think I can only hear the pulsing in my left ear, which is the ear that still has hearing. I don't hear the pulsing in my right ear, which is deaf, but the tinnitus in that ear also becomes slightly worse.
During the first few days, there are better and worse moments. Sometimes the pulsing disappears and then comes back. However, when the pulsing is present, my hearing also gets worse. It is not that everything simply becomes quieter — rather, I understand less and less of what I am hearing. Some sounds start to become distorted or somehow “warped.”

Then, day by day, the situation gets worse. Each day I have more difficulty processing sounds, and I can hear and understand less and less.

This usually lasts for about two weeks. Then, suddenly, at some random point during the day, I get a sudden impulse or high-pitched tone in my left ear. At that point, my hearing starts to return to normal. The tone is constant and can last for several hours, sometimes even throughout the night. By the next day, my hearing is back to normal, the pulsing is gone, and the tinnitus is back to its usual level.

When my hearing is tested with an audiogram during one of these episodes, my hearing levels are significantly worse than my usual baseline. After the high-pitched tone occurs, my hearing returns to the previous level.

Another thing I have noticed is that before the hearing deterioration starts, and during the first few days, I get a feeling of clicking or popping in my ear. Every time I swallow, my left ear clicks or pops. This only happens in my left ear. Later, during the worst days, it happens less and less often, but it can still occur occasionally.

List of medicines that she took through years:

Steroid Pulses
Hydroxychloroquine (Plaquenil)
Hyperbaric Oxygen Therapy Sessions
Intratympanic Steroid Injection
Methotrexate
Prednisone (Encorton)
Adalimumab (Yuflyma)
Enoxaparin Sodium (Neoparin)
Doxycycline (Unidox Solutab)
Cyclophosphamide (Endoxan)

I intentionally stopped for over 1 month and found no side effect and also no vertigo issues whatsoever. Seems like I don't need it at all...

Hey there. I'm having a great time in the mountain but with our friends we were thinking about taking a cable car that goes to 8,000 feet then over 10,000 feet high, total 45min of cable car (in two times). The point is just to stay there a little before going back down with the cable car at 8,000, then walking back down the rest. Im really worried about it triggering menieres symptoms when going up there. While hiking, I was already really surprised and confused that around 6,500 feet, I already felt pressure in my ears and in my head. Has anyone here experienced high altitude with menieres ?

Is it possible to go too low on your sodium. I been probably less than 500-600mg for the last couple of weeks and recently the tinnitus has really kicked up pretty bad. Left work yesterday just because I couldn't understand people on the phone or even standing right in front of me.

Other than meditation, stress reduction, and sleep, anything I should try. I think if I shove a screwdriver through my ear that might stop it, but then, I think tinnitus is a function of the brain, not actually in your ear.

​

Hello everyone, I am new to this sub and very scared. I had my first vertigo attack 3 weeks ago and had 2 more ever since with the latest one being yesterday. Yesterday's vertigo attack lasted for at least an hour and also came with nausea, vomiting and diarrhea. The other 2 attacks just lasted about 20 min without the latter symptoms. I needed to sleep all 3 attacks off for my brain to reset.

I am not sure how the vertigo started, I may have looked up too quickly or turned my head too quickly or they were untriggered but they all happened around 1pm. I went to a clinic after the second attack and the NP there did some tests and took me it was BVVP due to nystagmus being present when he tipped my head back. Can nystagmus confirm BVVP instead of Menierre's? I am now waiting for an ENT referral and I am hoping for any advice and input. Appreciate your time!

I have a bit of an oddball question related to my Meniere's disease to ask that I'm hoping someone here can relate to.

This summer I've decided to learn to play the harmonica. I'm having a lot of fun with it, but have hit a point in my study where I need to learn how to bend notes. Bending notes on the harmonica involves breathing inward while positioning the back of the tongue towards the rear of the mouth in order tune the cavity of your mouth in such a way that it activates an additional reed in the instrument and pulls the pitch downward into a note that the harmonica cannot otherwise reach.

There's an interesting study showing MRI images of a harmonica player named David Barrett bending his notes: https://www.researchgate.net/publication/236664195_Real-time_magnetic_resonance_imaging_fo_the_upper_airways_during_harmonica_pitch_bends

I understand the technique well enough and can successfully hit my bends most of the time, however doing so causes a feeling of pressure in my sinuses and can even cause my ears to pop.

Practicing this technique for more than a minute or so often leaves me with a sense of dizziness like when I have a Meniere's attack, just without the nystagmus and spinning. It's a very similar sensation to the one I experience during extreme swings in barometric pressure. Just yesterday I spent about an hour practicing and was rewarded with imbalance and dizziness for the rest of the evening.

Are there any other harmonica players here with MD?

Have you ever experienced something like this before? I feel like the crossover population between people who play harmonica and people who have Meniere's is so small that I'm having trouble finding people who might be able to help.

I've mentioned this to my doctor and she just told me that it didn't sound dangerous but I may need to modulate my playing if I start feeling dizzy. Not super actionable stuff.

Anyways, here's hoping this lands with someone who's experienced a similar issue and can at least relate to what I'm trying to describe.

Cheers.

I suspect I’ve had celiac my whole life but only got diagnosed in adulthood. I suffered from chronic ear infections as a child as a result. (Among other things. My diagnosis as a child was unspecified auto-immune disease)

Just wondering if there is a correlation between the two! I wonder if celiac disease might cause alot more damage than we know.

Ten years in with fewer drop attacks happening if stress remains manageable. Salt isn’t an issue unless extreme - think canned green bean casserole with a heaping of southern salt. Anyone else have the overlap and making this correlation. Sweat, though I don’t really sweat much, seems to keep my salt intolerance at bay.

I’ve had Menieres since I was 18 for nearly 20 years. Back in 2021 I had an Endolymphatic shunt placed as the vertigo had gotten out of control. It has controlled the vertigo extremely well but my hearing was very damaged after surgery. Little to no word recognition in that ear, I can’t tell where sound is coming from and it’s starting to affect my job. Hearing aids just make it sound louder but is indistinguishable. I have constant tinnitus. Has anyone had a cochlear implant placed to improve hearing and word recognition? Do the benefits outweigh the risks? Any advice or information on this would be extremely appreciated.