Typing this in laying in the bed in an ICU. Will probably be transferred later today (2:35am wed 2026) I a here at 6am yesterday out of surgery around 12:45.

Proud to say there was no real vertigo when I woke. Very dizzy though .

Within the first 3 hours post op I was out of the bed walking around the... yes still pretty dizzy but still doable. Pic attached showing me out for bed around the room.

Reading the comments in this sub, I was expecting so much worse when I woke up.

I've hacked together a video summary of my article on SPI-1005 - the experimental drug for Meniere's that has been in testing for more than 10 years. tried to summarise what I can although the article has more detail. https://www.youtube.com/watch?v=xcMNIpiZ9hU

I had a vestibular nerve section in November and I feel it is now going into my other ear. Does anyone have experience of this? I am wondering if it is possible to have surgery in the other ear if it gets really bad, or maybe an endolymphatic shunt but I've heard mixed things about this surgery.

Hi, I’ve been dealing with worsening Meniere’s symptoms for about 5 years. It started off just 2-3 vertigo/tinnitus/hearing loss attacks per year and gradually progressed until now. I’ve been having chronic persistent dizziness/imbalance and tinnitus/hearing loss that fluctuates but never goes away completely for the past year. It’s only my right ear that’s affected, praying it doesn’t go bilateral.

My doc ran blood tests and I’m positive for “heat shock proteins”. He said I likely have autoimmune inner ear disease but I looked it up and the disease progression just doesn’t look like a good match. Is it possible to have meniere’s with an underlying autoimmune component? The doc prescribed a 2 week course of prednisone. Has anybody had good results from steroids?

Hello everyone, I’ve been living with Meniere’s disease for several years now. The vertigo episodes and sensitivity to sudden weather changes make it hard for me to imagine what kind of work I can realistically do long-term.

I’d love to hear from people who either have this condition or know someone who does.. what jobs or career paths are manageable despite the unpredictability of vertigo and hearing issues?

I’m open to suggestions, whether it’s remote work, flexible schedules, or even land-based healthcare roles. Any advice or personal experiences would mean a lot.

Thanks in advance!

Like the title says, I’ve been walking either outside or on the treadmill for the last 2 months. But every time I go on a walk, I get these waves of vertigo and it takes a few seconds to stabilize myself.

But, it only happens when I go on a walk. It doesn’t happen if I’m walking around the house, walking to the store from the car, etc.

I take water with me and drink it throughout my entire walk. I usually only walk 1 mile to 1.5 miles. This happened to me last year when I tried to lose weight, but the vertigo scared me so bad that I stopped trying. Now I just try to power through it.

Does anyone else experience this? Does it even sound menieres related? Just looking to hear from others’ experiences ☺️

Hola, tengo Meniere unilateral izquierdo con todo lo que conlleva: vértigos, pérdida de audición y tinittus, hace una semana me doy cuenta de que tengo un ruido en el oído derecho, sobre todo en las noches, es leve pero me preocupa que sea el comienzo de un meniere bilateral, me podrían contar sus experiencias los que tiene meniere bilateral y como comenzó?

TL;DR: Dizziness + anxiety since 2018, started with a moment I mistook for an earthquake. For years I couldn't describe my symptoms usefully at appointments. I'm a developer, so I built myself a tracker. My own data surprised me: supermarket trips and short sleep are my two biggest episode predictors, exercise days have noticeably fewer episodes, and most episodes hit in the evening. Now I bring a one-page report to my doctor instead of guessing. Screenshots attached.

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In 2018 I was waiting for the lift at my office when the ground under my feet started moving. My first thought was earthquake. I looked around expecting everyone to be reacting. Nobody was. That moment was the start of something I'm still dealing with 8 years later.

Since then it's been the constant off-balance, rocking and floaty feeling, plus the loop everyone here knows: you feel unsteady, you worry about it, the worrying makes it worse.

The most frustrating part was always appointments. "How often? How long? What triggers it?" My honest answer after years of this was still "I don't know, it blurs together." Every appointment started from zero.

I'm a software developer, so a few months ago I did the only thing I know and built myself a tracker. I log every episode (type, intensity, duration, what I was doing, what helped) plus daily stuff like sleep, stress, screen time, exercise.

32 logged episodes later, my own data surprised me in ways "just paying attention" never did:

Supermarket trips keep showing up. Episodes follow supermarket days about 1.7x more often than normal days. I'd half-suspected busy visual environments were bad for me, but seeing it flagged as a strong pattern in my own logs was a different thing entirely. Apparently I'm a walking stereotype.

Short sleep is my biggest one. Nights under 6 hours are followed by episodes almost twice as often. 17 of my 20 short-sleep days had an episode.

Exercise genuinely helps. Days I move have about 3x fewer episodes. I always treated exercise as risky (what if I get dizzy mid-workout), but my logs say the opposite.

My episodes cluster in the evening, 5 to 10pm. 15 of 32 so far. No idea what to make of that yet, but it's consistent.

The bigger change is appointments. I now walk in with a one-page report (second screenshot) showing frequency, intensity over time, triggers, and even what's been ruled out, instead of vaguely gesturing at my symptoms. My doctor engages with actual data instead of asking me the same questions from memory.

Tracking didn't fix me completely yet. I still have off days, my average intensity is sitting at 7/10 and I'm not thrilled about it. But going from "this is random and hopeless" to "there are patterns and I can see them" has helped the anxiety side more than anything else I've tried on my own.

Does anyone else remember the exact moment theirs started? And if you've tracked your symptoms, what patterns showed up? The supermarket thing can't just be me.

I don’t even know if I can be posting here anymore. This last fiscal year has been a nightmare. For context I (32,F) have always thought I had Ménière’s AND epilepsy. I was formally diagnosed with Ménière’s and have been for 5 years. Until this fiscal year. My neuro did an EEG on me, and found that I was having activity at night while asleep/at times of day when I thought I was having Ménière’s attacks. He’s now worried it has to do with the temporal part of my epilepsy instead, or maybe migraines. IM now worried it has to do with the temporal part of my epilepsy. And to make matters worse he’s GONE. POOF. They couldn’t come to an agreement with his contract so he’s no longer with the company. Im hoping I can see him at his new place but I just won’t know until I try to go see him in August. I’m so lost, and confused, and just….done. 😭 No, I don’t want to hurt myself or anything drastic. I’m just so tired.

For the first time in a long time, I had an attack that lasted over an hour. I took some ondansetron and for the first time in a while spent the whole time worried vs in a “this too shall pass” mode while doing deep breathing. Is it an aura? Is it a migraine? Is it a Ménière’s attack like I always ASSUMED it was? WHAT IS HAPPENING TO ME? I want to cry. I want to scream. I’m so done. Just when I thought I was learning control, I realize I will never, truly understand myself. WTF do I even do. I messaged my ENT to see if there’s a way I can figure out if it’s migraines and thus connected to my temporal crap vs inner ear. Though I’ve lost hearing either way. I just don’t know anymore and I’m at my whits end. Regardless if I belong to this community or not anymore, thank you for letting me vent into the void. I just needed a place to scream into for a second. ❤️

Link to the YouTube podcast is in the article. Nice to hear him talk about his experience.

Hey all. Thought I'd get a touch of advice.

I was diagnosed with Ménière's when I was 12, past 30 now and at most the worst of it was when the ear fullness and tinnitus with deafness would happen. I had the occasional vertigo but it was hardly much. It went dormant for years but resurfaced again a few years ago with a vengeance on vertigo, and I've had numerous drop attacks and injured myself multiple times.

Decided to talk to a doc and do something about it, so he's put me on betahistamines and diuretics. I haven't been on them long but holy hell I feel infinitely worse. I did have diuretics years ago when I was 18 and I remember them making me feel like crap.

Right now, my vertigo spells have increased by 800% and I feel horrendously nauseous, weak and with splitting migraines, I can't even get up out of bed without falling over. Blood pressure is fine (I have a cuff due to hypertension, the diuretics has lowered it to a normal range). I think it might be the diuretics.

Gonna chat with the ENT again soon but has anyone had a similar experience?

hey! i’m on a vacation for the first time since last year. i’m very nervous regarding the food. i arrived late today and asked the restaurant for less salt. they told me they don’t add any, which is bullshit. 😕 i can’t cook for myself since there’s no stove in my room. i don’t know whether it’s better to just not eat? do you guys have any experiences? i’ll be here for 3 days. thanks x

After three years, I have solved my Meniere’s and will be writing it up. Neuromuscular compression/dysfunction within the sinus cavities that results in muscular rearrangements and subsequent neuromuscular dysfunction throughout the head and neck.

By solved, I mean that I followed many paths which failed and ultimately corrected my issues on my own. I have not had vertigo for 2 years and hearing/tinnitus are 95% recovered. The path to resolution is possible but not easy by any means.

I will wait to share the rest until I can publish.

Dear all,

I have been reading this Subreddit since my cochlear endolinfatic hydrops a few months ago and things aren't going great.

It all started in december 2023 when I had a 50db hearing loss from 250Hz to 1kHz that was recovered with cortisone immediately. It was ruled as SSHNL and never thought about it ever again. I got drunk, ate whatever I wanted without any problem whatsoever.

In January 2026, I had to move to Brussels for a new work from my hometown in Italy and started having problems a week before departure with the same hearing loss as 2023. I used cortisone at the end of January and fully resolved.

In mid february I broke my foot and stayed in Italy for 1 month and a half until the 7th of April when I hot back to Brussels and the next day I lost hearing once again. Got on high doses of prednisone but didn't help since I went to parties, drank and heard lowd music (don't know if that made it unaffective).

My ORL in Brussels decided to do a ITT injection in the 7th of May which resolved the situation and wanted to do another one a few days later which completely failed. He injected the anestethic which entered my ear and had a very strong vertigo spell for 6 hours. My 6k and 8k Hz didn't recover since then and are down by 40 and 50db respectively. Could that have been the cause?

I did 2 new ITT injection a few weeks later in Italy and resolved the issue. Sympthoms free for 15 days until it came back slowly and on the course of 3/4 days my hearing got back to -50/60db till now. Have done 3 consecutive ITT injections over the last 3 weeks without success and have been taking 50mg cortisone since 4 days, that also without success.

I did a VEMP test which gave no results on my left ear but I don't have any vertigo. I have been eating with no salt, and no alcohol. Full autoimmune blood test pannel is ok. I will be doing 3Tesla MRI and a CT scan of my ear in a few days.

As of now, since one week I am feeling a slight tinnitus also in my right ear.

Some sounds high pitched sounds give me bad sensations and when I am in closed crowded spaces I feel disorientated and stressed out.

I am incredibly scared for my future and very stressed out over my hearing and my job. What do you think will happen? I have the feeling I will never ever live like before.

Please help!

I know that everyone is different and has different outcomes with different treatments but I wanted to share incase it helps anyone else!

I have suffered from frequently increasing MD episodes for 7-8 years. I was getting them just about weekly, then I started also having vestibular migraines. I was the worst I had ever been in March and had vertigo for 8 weeks straight.

I read somewhere about trying NAD, and how it significantly reduces inflammation in the brain and inner ear, recharges the mitochondria, and rapidly increases cellular turn over. so I went to an IV clinic and tried a 500mg infusion. it took 5 hours to infuse and felt HORRIBLE the entire time I was having it done. The best way to describe the feeling is that of maxing out a rep and feeling the burning/straining/fatigue feeling but all over your entire body the whole time you are having it infused. its due to a rapid increase in ATP in all of your muscles.

That night, I felt pretty spent, but I woke up the next morning a new person. zero symptoms. ZERO. vertigo, gone. not even slightly dizzy. full hearing. energy out the wazoo. I assumed it was coincidental because nothing had ever given me such immediate relief, but it’s been since the end of April and I am still not only symptom free, but I feel better than I have in over 10 years. I have done 3 infusions since April, and I don’t even know if I needed the second two, I am just trying to keep this good thing going.

I don’t really know a mechanism of action for how the NAD fixed me, but for now - it did.

so, I figured I would share in hopes that NAD helps someone else suffering from Meniere’s or vestibular migrainesone note, I figured since the 500mg infusion helped so much I’d do a 1000mg infusion and that was really tough. the transient symptoms you feel while having it infused was so intense I had to tap out after 6 hours. it was slowed down so low that I would have had to be there for 12+ hours. definitely stick to 500mg or less.

I'm curious if anyone has noticed their symptoms are worse during a particular season.

For me, my flare-ups actually seem to calm down during the summer, and I tend to feel better overall. I'm wondering if it's just a coincidence or if anyone else has experienced something similar.

have you never noticed a seasonal pattern?

I'd love to hear everyone's experiences.

I, 40F, 125lbs, low dose semaglutide for peri-weight management since 2025, 2x daily Flonase, deaf on right ear, have been feeling dizzy/tipsy-like on and off for 3 months, daily for 3 weeks now. It all started with severe discomfort and pain in deaf ear. Three ENTs checked: my ear is fine. Told me to take Flonase 3.5 months ago. Told me to up the Flonase intake 1 month ago. Ear pain/discomfort has finally stopped but intense and constant tipsy dizziness is ongoing/worsening. 3-day prednisone helped but bloated me. Epley maneuver tried several times with no luck. Normal MRI of the ear and brain. What can I do to make this dizziness stop? I feel like I’m drunk all the time and lose my balance. Please help!!! It’s driving me crazy! NADs IRL have suggested TMJ or some neck or shoulder muscle issue - could that be??

After having Eustachian tube dilation, turbinate reduction, tube in ear, and Botox in my jaws and forehead nothing changed. My ear still felt completely plugged and the dizziness was awful. My primary doctor suggested a diuretic. I felt I had nothing to lose by trying it. I went home and googled how it works for this and I've been on it for a few days. I can already hear out of my ear better and the dizziness is much better. I read it's a slow process--I'm on the lowest dose of hydrochlorothiazide 12.5. I have to monitor my blood pressure since I tend to be on the low side and I haven't had any side effects.

Dies ist keine Werbung für die ich bezahlt werde. Aber ich möchte dieses Buch empfehlen. Es ist ein dünner Erfahrungsbericht, auch als Ebook erhältlich, den ich gelesen habe. Die Autorin ist seit 9 Jahren schwindelfrei durch eine Herpes Zoster Behandlung. Sie hat im Internet herausgefunden, daß es in Japan eine Studie gibt, wonach bei 80% der Morbus Menière Patienten eine Kur mit Aciclovir die Krankheit beendet hat. Sie ging damit zu ihrer Ärztin, die es ihr verschrieb. 3 Wochen x 3 Tabl. 800mg Aciclovir, 2 Wochen 2 Tabletten, dann 1 Woche 1 Tablette. Danach ergab sich eine Ohrenentzündung , danach war alles weg. Gehör wieder da. Bitte, ich bin keine Ärztin. Das ist keine Einnahmeempfehlung meinerseits!! Ich übernehme keine Haftung. Ich erzähle nur vom Buch. Es gibt noch andere Auslöser wie z.Bsp Eppstein Barr laut diesem Bericht. Wir sind kurz davor, es bei der 35-jährigen Tochter zu versuchen. Waren erst bei der Heilpraktikerin, die es mit Globuli versucht hat. Nach 8 Globuli gegen Gürtelrose (welche?) gab es eine extreme Woche (6 Anfälle zwischen 5 und 0,5 Stunden) jetzt ist Ruhe, aber wir haben keine Ahnung, ob es gewirkt hat. Es sind erst zwei Wochen rum. Die Panikatacken sind noch da. Also ggfs. versuchen wir es auch noch mal richtig mit Aciclovir. Ich gebe ein Update. Allen gute Besserung und möglichst gute Tage🙏 Ich bete für euch

I'm in the American Southwest and it's been really hot and really dry this whole past 12 months, winter included. This summer has felt like a daily fluctuation in my hearing that never ends. Anyone else getting the same?

Environmental factors seem to be my triggers, not sodium or caffeine or anything I can pinpoint.

Had a phone call with a Dr. and he said we can drink glycerol ( Mixed depending on weight of patient ) to stop current vertigo and even proactively.

Has anybody used Glycerol for therapy and what are your experiences?

Recently diagnosed with Ménière’s, but I have dealt with it for 5 years now undiagnosed . I am now on medication and a low salt diet and it appears to be helping me. The dizziness and nausea in the mornings have significantly lessened. Mornings are the hardest part of the day for me, I wake up unsteady and off for the first part of the day and then it usually burns off. Has anyone noticed mornings are the hardest part of the day for those with Ménière’s?

Thanks for any feedback you have!

Hi all,

My mom was diagnosed with Menieres back in the mid 90s. Pretty much since then, she's had 50% hearing in her right ear. Three days ago she visited a water park and did the lazy river with my dad. My dad trapped her under a waterfall, playfully. My mom says after the waterfall, she noticed she couldn't hear anything at all in her right ear. It's been 3 days and she still can't hear anything. She put a hearing aid in and couldn't even hear it beep. We're talking 0 hearing whatsoever. She thinks maybe water is just trapped... But I find it hard to believe she would not be able to hear anything at all three days later. She said it doesn't hurt and she didn't notice any pain or a pop out anything like that, just... no sound.

I'm thinking maybe the waterfall was a coincidence and has nothing to do with it? Or maybe I'm connecting it to her Menieres disease but I shouldn't be? I don't know, I'm concerned and have just talked her into seeing her doctor... She wasn't going to. Has anyone here with Menieres ever experienced sudden complete loss of hearing in your bad ear?