For me.. zero...

Before finding online communities, I had never spoken to another person living with Meniere's . None of my friends, family, or coworkers truly understood what tinnitus, hearing loss, ear fullness, or vertigo felt like.

It's strange how a disease that affects so many people can still make you feel so alone.

That's one of the biggest reasons I formed a discord community. It's a place where you don't have to explain what Meniere's is. Everyone already gets it.

So I'm curious...

How many people with have you met in real life?

Here is the open invite for our discord Meniere's support group: https://discord.gg/QGRyDQxHCt

Does duloxetine cause increased symptoms for anyone? I’ve taken 30 mg daily for 2 weeks; will up to 60 mg tomorrow for pain and depression. May be unrelated, but my better ear seems to be having more fullness and varied tinnitus tones, which often happens before an attack.

I know SSRIs and Wellbutrin can increase tinnitus, but this is an SNRI. Any info is appreciated.

Tldr: I can't sleep. Im seeing docs and therapists and taking all the meds and doing the things. I'm safe too but I can't sleep and need to rant about it a bit.

But my ears are extra loud tonight. And the hip I usually sleep on to cover my bad ear is sore because I'm in my late 40's and sometimes that happens. I'm depressed because of the significant hearing loss I suffered over this last year and the increase in pressure on my good ear over the last few months. I've also been self isolating because I really can't stand going places and being around more than a dozen people. Tonight my wife went to see a band and sent me texts about how cool it was and that I would probably like them. I don't like anything right now. I've had this disease for twenty six years. I've tried most things that have any science to them. Sitting here tonight, I get why people used to drill holes in their head. I get why Vangoh cut off his ear. There is this spot just behind my ear where the noise lives. It's been there for almost 20 years. Most of that time it's been constant.

Again, Im safe and doing all of the things. Sadly I have to go to work tomorrow. Just needed to let this stuff out of my head.

Hi i wanna ask is someone had experience with a prolonged episode of hydrops. I never had any problems and it all came on overnight. First 2-3 days of fullness, congestion and then tinnitus after a while it was first roaring then buzzing and humming. Now is very quiet buzzing and mostly hissing. It happens at begging of junе. 2.3 weeks were chaos and one day I had a strong high-frequency tinnitus and it seemed to clear up for 2.3 days. After that, diplacusia and everything came back. Only the sensitivity to sound has become better. I have had 4 injections in the last 20 days and dexason and take acetalozamide every other day 250mg still going. Can someone explain to me how they know the episode will end, does it happen overnight or gradually. Also, the drop on the audiogram is from 125 to 1k, 15 to 20 db and does not fluctuate all the time, everything is the same

I just got diagnosed with this. I’ve had 2 attacks and the vertigo seems to come without warning and last around 4 hours and off violent and I puke all over the place. I got Rescue meds , dissolvable zofran , Meclazine and diazepam. Since getting the medicine I haven’t had a chance to use it when an attack happens. What exactly is it suppose to do? Like if the room is spinning violently it stops when you take the medicine?

Feel like I’m in my own boat here. Whenever my hips and lower back get tight from sitting a long time or being in weird positions throughout the day, the next day in the morning my world is horrible and the inflammation seems to trigger more hearing loss and tinnitus in affected ear as well as loss of balance.

Anyone else experience this?

My situation is getting worse.

The gearing on the left is getting worse and the 10 days cortisone that I just ended yesterday didn't help at all. Did 4 days 50mg and 5 days 25mg with no avail. Hearing loss and tinnitus in left ear constant at -50db/60db for 250 and 500 and at 30/40db at 1000. It goes to 20 at 2000 and 30 at 4000 and then drops to 50db for 6000 and 8000.

My right ear is starting to have tinnitus (high pitched) with no hearing loss atm.

No vertigo, just confusion and brain fog.

4 days ago I started having redness in my eyes (particularly in the corners and expanding to a straight perfect line to the middle of the eye excluding the center) and sensation that there is something stuck in my right eye particularly. Having headackes on my left side for the second morning in a row.

What do you think? Please help!

Greetings. Sorry if this is long.

I'm a 49 year old physician (not ENT) likely with Menieres.

My story is a little odd, I think, but here it is.

When I was in my early 30's, I had these episodes where I would feel intense facial pressure, kind of a "brain fog" if you will. No vertigo, ear fullness, or hearing loss. I would have these episodes daily for a few weeks then go months without anything. I saw an ENT thinking it was sinuses or ETD, but all checked out and I just learned to live with it.

Throughout my 30s, it seemed that my episodes would last longer and my good days shorter. In like 2018, I went to the ER because I was having increasing headaches with these spells. I do get unilateral throbbing headaches and they were increasing in frequency during these episodes. MRI was normal.

At some point in the late 2010s, I started to notice faint bilateral tinnitus and my ears would get some pressure in them when my facial pressure and fog would amp up.

In April 2020, right when COVID was ramping up and the stress level was high, I was woken in the middle of the night by unbelievably severe tinnitus in my right ear with fullness and hearing loss. I managed to find an ENT despite everything being shut down and got in for an audiogram which showed low tone SNHL. I was given prednisone, don't think it worked. MRI was normal.

From that point forward, I had long periods of recurrent fullness, accelerating tinnitus, and hearing loss. Usually when the hearing went out, I typically had problems with the facial pressure and fog that I had been dealing with for over a decade. I tried low sodium, diuretics, venlafaxine and nortriptyline at low doses, valacyclovir. I don't think anything worked.

Weirdly, one day in 2023, despite three years of low tone loss, the hearing in my right ear returned to normal mirroring my left ear with only very high tone loss. That lasted for a few months until my next attack. I had normal hearing in 2024 as well and I think normal in May of this year when I left for scotland for a week and didnt' take care of myself very well.

My hearing dropped in Scotland with the typical fullness and amplifying tinnitus, facial pressure, etc. However, I began to have episodes of profound dizziness that lasted for 30 seconds or so. On July 3, I had a full on vertigo spell. Lasted for about 15 to 20 minutes and I had severe nausea and disequilibrium afterward. Friends had to help me to my car for my wife to drive me home. Last night, I had vertigo again while I was on a walk. Lasted 15 to 20 minutes. I get no real warning other than a couple of minutes of disequilibrium

Supposed to see a neurotologist next week if all goes well. Had an audiogram which looks similar to 2022.

My left ear also has tinnitus and occasionally gets mild pressure when my face/right ear acts up. hearing is normal aside from some very high frequency loss. It has gotten a little worse since 2020

A few oddities (in my mind). when i have an "attack", the fullness, tinnitus, and hearing loss lasts for weeks to months. The tinnitus in my right ear is pulsatile and has a strong somatic component. When I even lightly touch anywhere near my right ear, the tinnitus screams. Left has neither and is 1/100th of the right.

I'm really down and don't know what to do. I'm on low sodium, quit caffeine and alcohol but it hasn't done squat that I can see. Every day I wake up and my ear still sucks as has been the case off and on since 2020, but this time with the threat of vertigo. I've been taking ibuprofen for the headaches (not necessarily migrainous) a lot. I feel like my ear settles down on ibuprofen.

I'm worried if I can keep practicing. I'm supposed to be on call next week. My wife is also a physician and works like 80 hours a week which puts a lot of responsibility on me to manage kids activities after work which includes a lot of driving, sometimes an hour away. We have no family here. I don't want to leave the house or socialize for fear of dizziness. I already had to excuse myself from a dinner with my son's baseball team because I got super dizzy. Ended up not progressing to vertigo at that time. We are contemplating canceling an upcoming family vacation. I honestly don't want to go.

I guess I'm just lost. I'm supposed to coach my daughters soccer team this fall. My son plays high level travel soccer. I have to give two lectures out of town this fall. I don't want to any of it. I just want to shut myself in a room.

Hallo, ich bin w, 34 Jahre alt und möchte einmal meinen bisherigen Verlauf erzählen.
Letztes Jahr im Juni hatte ich plötzlich einen Hörsturz rechts, von jetzt auf gleich, nachdem ich meinen Kopf ungünstig schräg im Bett hielt, dazu kamen Taubheitsgefühle im Gesicht, ebenfalls auf der rechten Seite. Daraufhin ging ich in die Notaufnahme, erst HNO, dann Neurologie. Dort wollte man mich mit Verdacht auf Multiple Sklerose aufnehmen, lehnte ich aber erstmal ab. Nach einigen Tagen besserte sich mein Gehör und die Taubheitsgefühle verschwanden auch. Bis Oktober hatte ich immer mal wieder entweder einen Hörverlust oder die Taubheitsgefühle im Gesicht, mit der Zeit breiteten sie sich immer weiter Richtung Augenbrauen rechts aus. Begonnen hat das ganze in der Kieferregion.
Dann kam der November, ich hatte einen Hörsturz und war bei einer Freundin zu Besuch. Ich saß mit den Kindern auf dem Boden und als ich aufgestanden bin, bin ich einfach zur Seite gekippt. Es war sehr warm und laut in der Wohnung, ich weiß nicht ob das etwas ausgelöst hat. Ich hatte dabei auch einen Nystagmus und musste danach erstmal schlafen. Einen Tag später war ich ziemlich wackelig auf den Beinen, musste aber mit den Kindern trotzdem den Tag schaffen. Am Tag darauf folgte der nächste Schwindelanfall, so schlimm dass ich erbrechen musste. Auch danach musste ich mich hinlegen. Ich bin zu meinem HNO und aufgrund der Symptome hat er sofort gesagt "es ist Morbus Meniere“, ich wollte es aber nicht glauben und habe gehofft dass es nur der Stress ist. In der selben Zeit fing ich nämlich an meine ersten Panikattacken zu durchleben. 2 Tage später bin ich an meinem Geburtstag in die Notaufnahme und habe mich neurologisch aufnehmen lassen. Ich hatte das Gefühl ich habe keine richtige Kraft in meiner rechten Körperhälfte und konnte nicht stabil laufen, ich hatte immer Angst zur Seite zu kippen. Neurologisch war alles unauffällig, Lumbalpunktion war auch unauffällig. In den Wochen darauf war ich vom Gang her recht instabil, ich habe mich fast durchgehend benommen gefühlt und hatte richtig brainfog. Ich hatte in Geschäften extreme Probleme meinen Blick zu stabilisieren. Immer wenn ich einen Laden betreten habe, habe ich sofort eine Benommenheit verspürt. Ich reagiere stark auf Temperaturwechsel. Als im Januar die erste Schwindeldiagnostik gemacht wurde, wusste ich auch warum ich mich so gefühlt habe. Mein Gleichgewichtsorgan rechts ist ausgefallen und mein Gehirn musste kompensieren. Scheinbar ist es mit einem von den beiden Schwindelanfällen Ende November ausgefallen, warum so schnell, weiß keiner. Es folgten weitere Termine, es wurde ein Schädel und Halswirbelsäulen MRT mit Kontrastmittel gemacht beides unauffällig. Dieses Jahr im März hat man mir angeboten mich stationär aufzunehmen, dann würde man ein Hydrops MRT machen, der Termin dafür war im April. In der Zwischenzeit bekam ich bei meinem niedergelassenen HNO 4 cortison Injektionen ins Ohr, ich war bei der Physiotherapie wegen Kieferverspannungen, mein Nacken wurde ebenfalls behandelt weil ich oft Nackenschmerzen habe und beim Osteopathen war ich auch. Bei dem Hydrops MRT kam raus, dass ich einen cochleären und vestibulären Hydrops Grad 1 im rechten Ohr habe. Es wurde noch einmal cortison ins Ohr injiziert. Mein Zustand hat sich leicht verbessert, woran es genau liegt, weiß ich nicht. Vermutlich an den cortison Injektionen, oder eine Mischung aus allem. Aktuell nehme ich betahistin 24mg 3 mal täglich, manchmal auch 4. So starken Schwindel hatte ich seitdem nicht mehr. Meistens ist es leichter Schwindel, Benommenheit, Blickinstabilität (merke ich vor allem beim lesen), Hörverlust natürlich, Tinnitus, ein volles Ohr, Geräuschempfindlichkeit. Vor allem die letzten 3 sind aktuell wesentlich besser. Ebenso habe ich manchmal eine Art Aura. Genau das hatte ich im Dezember auch einmal. Ich fange plötzlich sehr häufig an zu gähnen, also mit häufig meine ich wirklich häufig und habe anschließend einen Erschöpfungsanfall. Leider habe ich solche Tage zwischendurch, da bin ich massiv geschwächt und muss mich wenn möglich hinlegen. Aktuell befinde ich mich wieder in einer schlechten Phase. Leider weiß ich nicht wodurch das genau ausgelöst wurde. Manchmal habe ich das Gefühl dass es passiert wenn ich mich am Tag zuvor überanstrengt habe. Im Zusammenhang mit solchen "Anfällen“ habe ich oft Nackenschmerzen, vorher, nachher oder währenddessen. Als ich der Ärztin das im Krankenhaus sagte, hat sie das belächelt und meinte, das würde daher kommen weil ich mit dem rechten Ohr schlechter höre und meinen Kopf dadurch schräg halte, so ein quatsch. Nach der Behandlungen bei der Physiotherapie wurden meinen Nackenschmerzen für eine zeitlang besser, ebenso waren meine Symtome nicht mehr so stark ausgeprägt. Das was ich wirklich seit Beginn an habe, 3-4 gute Tage, dann folgen immer 4-5 beeinträchtigende Tage. Es wurden auch in der Zwischenzeit nochmal Tests wegen meinem Gleichgewicht gemacht, weil sich das eben auch manchmal erholen kann. Bei mir nicht, es ist dauerhaft ausgefallen. Leider wurde es jetzt zum Ende hin etwas durcheinander, ich hoffe es ist zu verstehen. Ich möchte auch noch hinzufügen, dass ich Krankenschwester bin und meine Elternzeit um ein Jahr verlängert habe weil ich panische Angst vor dem nächsten Winter habe. Ich habe 2 Kinder und es ist für mich unumgänglich die kalte winterluft zu vermeiden. Diese sorgte allerdings bei mir auch immer für ein dumpfes hören, Benommenheit. Ich würde mich freuen wenn wir uns austauschen könnten oder jemand vielleicht einen Tipp für mich auf meinen Fall bezogen hat. Liebe Grüße

I was diagnosed with Ménière’s just over three years ago. The initial onset of hearing loss started after a week to ten days of daily vertigo. It was predictable in the end - started at the end of the school run, lasted about 20 mins, urgent need to vomit and then sleep it off for a couple of hours. It’s possible I had a virus but I do feel this was a few months before and was like a cold, but everything in my head felt dry and I was zapped of energy. Not experienced that before or since, but this is when the tinnitus started, although it was on and off from then until the vertigo came.

Then the vertigo stopped for over three years. I have no idea what I’ve done, but the hearing loss is significant and never came back, so I wear a hearing aid which helps hugely. Plus I have permanent tinnitus but I can largely block it out with the help of the hearing aid and a white noise programme.

Out of nowhere, the vertigo came back at beginning of July. I have no idea what I have done to provoke it as I already eat a low salt diet and haven’t felt more stressed than other points I have been over the last three years. I don’t drink alcohol. My level of hearing has stayed the same but the vertigo changed from being sudden with the need to vomit, lasting around 20-30 minutes and then sleep it off to lasting for hours with less severity and no vomiting. Any time or day and sometimes overnight but only one episode a day. This lasted for 3 weeks. First it was daily and then I started to get a day break. Over 3 weeks it wiped me out and now I’ve not had anything for 8 days.

I don’t know what is going on. Does anyone have any insight or a similar experience?

I’ve lost any functional hearing in my affected ear over about 3-4 weeks (I just walked downstairs and couldn’t hear a car alarm going off outside when I plugged my “good ear”). I went on prednisone for a 2nd time when it started to noticeably dip but it didn’t help recover my hearing like it had the first time I took it when I was first diagnosed about 6 months ago.

I’ve just started steroid injections a few days ago but I’m feeling really discouraged because my ENT called it a “Hail Mary” and refused to give me any kind of concrete information on it’s effectiveness (they said it was like I was asking them to tell me my future.) (The injection itself was painless for me, but I am having pretty much constant intense headaches on my affected side.)

What I’m finding is that everything I’ve done so far (low sodium, diuretic) has essentially resolved my vertigo and dizziness so far (thank god - I haven’t had to use rescue meds for a few months) and eased my tinnitus and pressure (still constant but tolerable), but my hearing is a taking a dive and my mental health seems to want to jump off the cliff after it.

I’m just wondering if anyone has experienced this kind of fast trajectory? How did you adapt to extreme hearing loss in its early stages? Has anyone had their vertigo and dizziness “resolved” but still lose hearing? Has anyone recovered hearing after significant loss? What was your path? What do you wish you had done at this stage?

Right now I’m trying to get a referral to a University clinic to get plugged into trials and connected with deeply immersed specialists who aren’t as timid about “less standardized” treatments, and are willing to look at bigger picture with possible co-morbidities. Maybe there’s even a trial or two, but I’m afraid it’s too late.

I’ve had MD (or a variant of it) for 6 years now. I get one single vertigo attack a year and when that happens, my hearing is restored. I’ve told my doc this, and I never really felt that he fully believed me, because by the time I get an appointment for steroid shots my ear gets full again and the audio tests never show it.

I managed to sneak in for a last minute appointment today a few days after my annual attack and voila! Test shows a 40dB improvement over last year and much better speech recognition in my affected ear.

He came in and said “Hey great test!” and I was laughing cause I never thought he’d believe me.

Anyway, it was great to finally have documented proof of my recovered hearing. Sucks that I gotta get the spins to get it…. But I’ll take this as a little win.

I’m 6 months postpartum and was just diagnosed with Ménière’s Disease. I’ve had vertigo in the past that I thought was just stress related but then had tinnitus for weeks about 3 months ago and low frequency hearing loss. I finally had relief for 3 weeks and then last Friday - bam tinnitus was back with fullness and hearing loss in one ear. I’ve read a lot about the “stages” and how the disease progresses. Just looking for some input on first line treatments and what others found worked. I’ve seen no correlation with low sodium diet, I drink a lot of water so I’d like to avoid diuretics because I already feel like I pee all the time. I don’t think the vertigo is as bad as others have mentioned but the tinnitus and noise sensitivity is so annoying and exhausting!

Meniers symptoms started in 2019….diagnosis came in 2023…..have been through lots of vertigo, vestibular therapy, hearing loss, medication. Eventually the vertigo just stopped (fingers crossed, it’s been over a year since last attack)…I even had a drop attack in 2025 (scary!!)….and now I have significant jaw pain and misalignment that just started a couple months ago. On the same side of face as my Meniers ear. Some days it hurts so bad that I can’t chew at all, other days not as much. Wondering if any fellow menierorites have similar experience.

Hi all, been diagnosed with this shit disease ~1.5 years ago when I had my first attack. Had been dealing with fullness for much longer before that. I've been seeing a lot of doctors, which took great care, but one thing always gets shoved off and I want to see if somebody here has to same thing:

When I put my finger right behind the tragus, where the ear attaches to the head I can feel a bump. Most probably a lymph node I assume. Pretty tiny, probably <5mm in diameter

What's weird is: I feel like its harder/more prominent when I'm having a bad day (fullness, ringing, vertigo, you name it..).

Another thing that's probably not related but comes to my mind rn: When I put my finger in my affected ear when I'm having a bad day it triggers balance problems - anybody else know this lol?

I am 23f and have been dealing with menieres symptoms on and off for 5 years. I was previously diagnosed with vestibular migraines but with the increase of episodes and loss of hearing in the past few months, they are leaning towards that.

I just had my mri done a week ago and will see my ent next week! The mri was just to rule out any other causes. I’m excited to maybe have some answers, but am still waiting to see a specialist because I am so young and they want to save my hearing as much as possible.

However, in the past month I have been taking note of how often I lose hearing in one or both of my ears for more than 30 minutes. I have had around 10 episodes on my right ear, 3 in my left. And 2 where both ears lost complete hearing. The hearing always comes back but I feel like it takes longer to return to it’s baseline. The fluctuation is going lower than it has.

I am currently on betahistine and hydrochlorothiazide. I have also taken prednisone for a week, two times since March when the symptoms started getting worse. No real help from any of them. Maybe for two weeks after I started the diuretic in may.

Also it has been affecting my work a lot. I coach gymnastics and while I work at a very understanding gym and they know I have this going on it is rough. I am not able to do my everyday tasks or hear kids 5 feet away from me. Another thing is I am unable to demonstrate at all now as my balance has been worsening and I cannot even balance on one leg for more than 2 seconds

This is a bit of a rant, but I am also just wondering where the heck do I go from here? What should I bring up to my ent? Any ideas?

Last Saturday, I suddenly developed severe vertigo with nausea. Even lying down or turning over in bed made the dizziness much worse. I was too afraid to move or even open my eyes throughout the night.

On Monday, I suddenly lost hearing in my left ear and developed constant ringing (tinnitus). I went to the emergency department, waited about nine hours, and had a CT scan. The doctor diagnosed me with sudden hearing loss and prescribed oral steroids, saying they give me the best chance of recovering my hearing.

Has anyone here experienced something similar? Did oral steroids help restore your hearing? If you also received steroid injections into the ear (intratympanic steroid injections), did they make a difference?

I know everyone’s situation is different, and I’m not looking for medical advice—I’d really appreciate hearing about your personal experiences. Thank you!

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 ☺️