Hi all, I've been suffering from menieres disease since the last 6 months and had a 62% hearing loss in my last pure tone test. I got 8 dozes of intratympanic steroids from 2 different docs (first 3, then 5).

My hearing was better but then it has worsened again. Is it possible to take the drug periodically to keep my hearing intact?

Also, I'm having 24x7 vertigo since the last 4 days or so. By constant I MEAN IT. It never stops

A lot of the questions that new sufferers bring to this group could be addressed by reading the FAQ on the Wiki. Would it be possible to link to it directly on the homepage of the group? There are a lot of good resources there that I wish I had read 5 months ago. And would anyone be interested in working on updating the FAQ? I would be happy to contribute.

So I finally read the Wiki for this group (It would be great if it could be featured more prominently--less tech savvy users like me may not know what a wiki is or where to look for the hyperlink) and I saw a very interesting fact, which is that studies have found that upward of 80% of those suffering Menieres had Hyperinsulinemia, chronically elevated levels of insulin. There are also connections between diabetes and tinnitus.

Can anyone shed any light on this? Has anyone tried to address their Menieres or tinnitus issues by trying to manage their blood sugar or addressing Hyperinsulinemia? Does anyone have a sense that fluctuating blood sugar can impact their tinnitus.

I have had elevated blood sugar for at least 10 years and have had tinnitus in my left year for ten years. My blood sugar is in the pre-diabetic range and my doctor suggested that we look into it at the time of my next physical. He didn't suggest any connection to my ear problems.

Hi all just looking for some advice, I take 48mg Betahistine every day (2 x tablets 3 times a day) for the last 3 months. Initially I was on half that but I was still getting vertigo attacks. Things improved for the most part but I still had the occasional mild spell. Fast forward to 12 days ago and I’ve gone back to 1 or 2 attacks per day. This is making work a pain for me as it’s unpredictable when it will happen. I’m drinking over 2 litres of water a day, I don’t drink alcohol or caffeine and I’ve started reducing salt this last week and a bit. Today I’ve had 2 attacks alone. I spoke to my GP (I’m UK based) on Friday and I’ve been prescribed Promethazine hydrochloride to try, ha anyone tried this alongside Betahistine or on its own? To clarify, I haven’t been sick since taking Betahistine which I’m thankful for, it’s just the constant vertigo attacks that I’m struggling with. I have hearing loss in my right ear with some tinnitus which isn’t too bad and I can ignore most of the time. I have noticed the fullness feeling more of late as well. I’m due to speak to a specialist early next year about injections into my ear as well. So between now and then I’m just trying to find any medication that can help stop the vertigo attacks.

Any one else have sleep apnea along side their meniere's?

So Ik i have issues with balance, and its my 3rd year with MD ( menieres disease) I have been off the meds for some time now, just to give it a break, but I have nothing over the time that walk in dark areas also triggers a wavy sensation in me, my attack usually starts with feeling off balance and slightly vertigo, followed by tunnel vision where lights feels very overwhelming, and if I look around too much the vertigo increases, and busy places also is a big NO then, what to keep in mind at such times ?

Looking for a hack here!

Hey folks, just had my first violent vertigo attack.

I was diagnosed about 4 years ago with cochlear hydrops after some hearing loss, aural fullness, and tinnitus. For two years, Allegra worked to mostly make me symptom free.

Once that stopped working the low salt diet worked wonders for the past two years.

About a month ago, tinnitus and fullness crept back in, and no amount of salt, caffeine, or gluten cutting helped much. Eventually vertigo ramped up too, culminating in today's attack.

This morning I had intense tinnitus and aural fullness, and then Bam! The world was spinning, I was sweating buckets, and felt like death.

Ended up projectile vomiting everywhere as I tried to make it to the toilet. I spent the next several hours there emptying my system from both ends.

Eventually I was able to stumble into a bed and pass out while the world slowly stopped spinning.

Questions: Where do I go from here? Is there any drug or surgery that can help me? (I've been on Betahistine for two days so far - 16mgx2)

I have a corporate job and I'd prefer not to lose it... how??

Any advice or words of encouragement would be greatly appreciated.

Hi I was diagnosed with menieres by an ENT 2 years ago following a lifetime of fluctuating hearing loss and tinnitus.

Hearing loss for most of my life was in my left ear in the severe range and across all frequencies and I have some low frequency loss in my right ear until recently. I’ve worn a hearing aid in my left ear since I was about 13.

I’m now 43 and over the last 2-3 years my hearing in my right ear is all over the place with loss across the board and low frequencies often sounding v distorted. Hearing aids help but people still literally need to be standing right in-front of me with no background noise for me to understand what people are saying. Hearing loss can go from 0.5 days to 18 months and is down at the moment. I have no obvious triggers and I’m on a low salt diet, drink minimal alcohol, chocolate and caffeine. Getting down and apprehensive about any kind of social interactions that aren’t immediate family.

I feel fortunate that I don’t get episodes of vertigo, but I understand for most people that suffer with menieres this is a prominent diagnostic symptom.

Interested to know if others have a similar experience. Is it possible to have menieres without the vertigo? Are there any other conditions it could be?

Thanks!

Has any one had the ear pressure test performed and it instantly gave you vertigo? I had my hearing test done yesterday followed by a tympanometry test where the put these buds in your ear and adjust the pressure. Instantly in my worst ear I had vertigo, thought I was going to drop to the floor. Anyway, later on in the evening I did a good shop and felt so sick, I actually started wretching, I managed to complete the shop but then was sick when I got out the store. It was so embarrassing, I was crouched down behind my car physically being sick. I have never had this fear done so didn’t know what to expect. I took my prochlorperazine and took myself off to bed. I have woken today with popping ears and vertigo still present. Anyone experienced this? Any suggestions on how to relieve it?

My husband was diagnosed with Menieres and had his first “attack” (his doctor calls them “breakthroughs”) in July. It was an awful ten-hour affair of puking, diarrhea and dizziness. Near the end we called in an IV nurse to give him fluids and Benadryl to help him sleep, but he was beat for days.

Since that first attack he’s been through rounds of prednisone for tinnitus, hearing loss and fullness and is on an extremely low-salt diet.

We just returned from a cross-country trip and he started feeling dizzy in the car on the way back from the airport.

I thought this post would be called “what to do at the start of an attack to make it better” but he’s now in the same place he was in July. I gave him Xanax, Meclizine and Zofran, but that’s all come back up and there seems to be nothing to do but wait this out and clean up puke/worse buckets?

So my question now for those who’ve been through it: is there anything I can do now to make it better or are we in a waiting game? He can’t open his eyes and doesn’t think he can move or swallow any pills. He’s going to beat himself up for being unable to stay super low sodium on this trip, but I’m thinking it was coming anyway. Appreciate any advice.

Some days I don’t see how I am going to be able to keep living with this.

Can they ever lead a normal life? Go on vacation? Party? ... or how do they generally handle themselves?

Dear all,

I am seeking some advice as I have lost faith in doctors.

Last week, I had a sudden overwhelming vertigo. Got my self in recovery position and called for help, taken to hospital with severe nausea, and 10hrs vomiting. It seemed like the attacks came in waves, and ears buzzing was always the warning. Just before midnight, I was discharged since scans came out clean.

I was referred to Hospital's ETN Dpt for the day after, where Dr diagnosed Neuritis, despite me telling him I never had a cold and that my right ear is blocked, sounds are distorted.

1 week later, I am seen my local ETN clinic where hearing was tested and Dr concluded either a passing blood clot which damaged the nerve or meniere. I doubt the blood clot, since ambulance crew said my vitals were fine.

A week before this incident, I was hearing high pitch every now and then. and 6 months prior, I did have a sudden ear pop where I almost fell. it was 2:00 am, so I slept it off and had a headache for 24hrs. This was during a very stressful period and assumed it was a side effect not likely to reoccur. Since then, I have been doing very good mentally.

Now on day 6, my vertigos are 4-6 time a day, lasting 1-2mn, but my ear is buzzing 24/7. I am doing the rehab exercise and walks, cutting down salt and caffeine.

I am grateful I still have one good ear...for now. But feeling cheated, as I live a healthy life style, +55 years old, workout 4 times a week, intermittent fasting. The only thing I screw up is 2hrs before bed time, glued to my ipad (perhaps neck pressure). Deep down, am still hoping this could be labyrinths and it will pass.

Anything you can tell me would be great help.

Edited:

I just realised, 3 weeks prior to onset, I had a molar infection treatment and antibiotics. This was same side as affected ear.

I had been diagnosed with Meniere’s 15 years back. On betahistine for last 10 years.

I have been having ear pressure , muffled hearing for last 5 months- bilateral. Last month ENT put me on orals steroids for a 5 day course and my ear pressure went away and hearing returned back to normal.. and then it wore off after few days. Doc gave me another round of oral steroids, this time for 11 days (tapered) and again I got benefit and back to normal hearing. It stayed that way for 5 days and again went back to muffled hearing. Doc put me on 3rd round of prednisone - 11 day course.  Today is the first day of my 3rd round of steroids and with first pill I see drastic improvement. For sure steroids work for me.

I know steroids cannot be given for ever.

My Otolaryngologist feels I will get better with this round of steroids  .

Question for fellow warriors - what is the end game here ? Do I have Eustachian tube dysfunction or auto immune disease ? My doc feels these are Meniere’s symptoms.

Love a good Thanksgiving meal, but hoping it's not going to make symptoms worse. Doing as low sodium as possible but still keeping fingers crossed don't feel worse afterwards!

I'm partially convinced my Meniere's is an autoimmune disease. I've had other autoimmune issues in the past. I've heard these new glp-1 peptides treat some autoimmune issues. Has anyone here taken these peptides during Meniere's and what effect if any did they have? Thanks!

I wonder if I truly have Ménière’s. I had two drop-down vertigo attacks eleven years ago but nothing since. I experienced hearing loss soon after the attacks but has not increased since. I had tinnitus since I was young and same deal, became worse right after the attacks but has not become worse though still f*cling loud. I have imbalance and fullness in my ears, aleviated by taking Sudafed. I work. I drive without issue. Does this sound like Meniere’s still?

12 years ago I suffered sudden severe hearing loss in my right ear. Being a professional musician, this was devastating, to put it mildly. I eventually regained most of the hearing, but I learned some hard lessons. I hope my learning curve helps others, so here goes. Those of you considering HBO treatment ((Hyperbaric Oxygen chamber), pay special attention to no. 2 below.

1. Get help from an ENT immediately. My primary care doc was clueless so I went 3 weeks before serious intervention. Do NOT assume it’s a cold/allergies/ etc, especially if it’s only one ear affected. There’s no harm in seeing an ENT even if it turns out to not be SSNHL (sudden sensorineural hearing loss). After 2 weeks without treatment your odds of recovery go down dramatically.

2. If oral steroids DONT work (likely if you wait 3 weeks as I did) then the next step is intratympapanic injections of steroids directly into your middle ear, with a needle through your eardrum. I’m not gonna lie: it hurts like hell. Anyone who tells you they can numb it up enough to make it relatively painless is bullshitting you. BUT, listen up: it only hurts really badly for about 10 seconds, then it hurts pretty badly for about another 15 seconds or so, then it dulls out pretty quickly after that. IMPORTANT: At this stage of the game (if you waited too long for oral prednisone to work), the ONLY thing that will work is Hyperbaric Oxygen. BUT….Your insurance company will NOT cover HBO (the miracle treatment that saved my hearing ) unless you do the injection first! Why, you may ask, knowing full damn well that the injections are useless, do they not allow you to move on to HBO? Well, my ENT told me that the insurance people know a large percentage of people in my situation will be too scared to have a needle stuck through their eardrum, so they will opt out at this stage. And it SAVES the INSURANCE COMPANIES a ton of money. Cynical bastards, yes indeedy.

3. Bottom line: HBO is amazing, and at that late stage your only hope. I would get the injection again in a heartbeat if it’s the only thing standing between me and an effective treatment. It’s not worth railing against the corrupt insurers, just jump through the hoop.

4. Side notes:

A. Daily Betahistine finally stopped the constant attacks and hearing loss.
B. Cutting down or eliminating caffeine and alcohol really did help me.
C. Three more reasons to jump through the sadistic hoops (as a last resort):

1. Listening to music with only one ear truly sucks.
2. Safety: with only one ear you have no idea what direction sounds are coming from.
3. Staving off total loss of one ear will reduce another kind of existential stress: realizing the next one lost means total deafness.

Hope all this helped, sorry for the length….

Hello, I apologize for the long text. I am a 19F and I would like your opinion on what I am feeling.

First I'm going to talk about my father, who years ago had a very serious vertigo attack that lasted for days, he jumped over a wall, and after that he couldn't get up again. At one point doctors suspected he was having a stroke. In the end they said he had a labyrinthitis attack because of his altered blood test levels (I say labyrinthitis, but neither my father or mother can explain what exactly he was diagnosed with), he should have done that test where the chair keeps spinning, but they didn't have that in our city, so he never did it.

Now about me, during the pandemic I started having hearing problems and tinnitus. I had two audiometry tests, one showed a slight hearing loss and the other one I had a year later was normal. The tinnitus has stopped and only appears rarely, but I never stopped having constant hearing problems. Sometimes I notice it more, sometimes less. I have difficulty understanding speech in noisy environments, especially deep voices. Sometimes I felt pressure in my ears, but always went away quickly, although I haven't felt it for a few months now.

Since last year I have had pressure drops with dizziness, nausea, gastrointestinal problems, nothing very serious, but enough to bother me a lot. I also started to get nausea when I'm in a car this year, something I haven't had before in my entire life. Today I had my worst vertigo attack yet, after an anxiety attack, which lasted three minutes and made me extremely nauseous and hot. I managed to film a little of the end and my eyes had horizontal nystagmus.

This wasn't my first vertigo, I had some before July, sometimes a month or two of difference, and they seemed to get worse over time. I believe the first one lasted about 30 seconds. I can usually feel when they are about to happen, and after they happen I feel sick for a while. At first I thought I had labyrinthitis like my father, but apparently it's not hereditary. Now I'm more inclined towards BPPV, but all my vertigo happened in different ways. Except for the one I had today, which could be BPPV, because I tossed and turned in bed, or something emotional due to anxiety. No others appear to have been related to head movements. I had one after having blood drawn, and another while sitting at the kitchen table making a sandwich lol. Some while I was getting up or sitting down from the couch, and others that don't seem to have any reason at all. So I don't know.

When I read about Meniere's fluctuating hearing loss I was a little suspicious, but my vertigo is not so severe as to last more than 20 minutes. I read some reports about the beggining being milder, years before the disease actually manifested itself. The description of the symptoms also confuses me a little... The low blood pressure, nausea and other things I felt were not aways associated with vertigo. Does this only happen during the crisis? or before and after? I would also like to know how hearing loss fluctuates is, and if it is also associated with crises.

I'm going to make an appointment to see a neurologist, but I probably won't be able to go until next year. I would just like to hear your opinions and experiences.

I apologize if this post is very ignorant, I understand this is a place for people suffering from this disease. I can delete the post if it is not the right place.

Right now I'm worried about the nystagmos and probably acting too emotionally lol

I'm going to do a trial of betahistine. I called a local compounding pharmacy in Los Angeles and they said it would be expensive if they made it and to try a Canadian pharmacy.

1. Anyone in the LA area have an affordable compounding pharmacy?

2. If you've had to get it from Canada, what pharmacies have you had good luck and good prices with? Thanks!

Been to ENT today I have a diagnosis of menieres,and constantly feel off balance.My consultant told me you have to try and carry on best you can ,otherwise it can become a problem just doing nothing.

But how do you cope,if you feel off balance,nausea plus anxiety about going out in case you have a full attack.

I also have an eye issue retina detachment, which wasn't successful after operation and can't see anything,which the consultant said isn't helping things.

I am trying my best to keep doing things but sometimes it's too much. Does anyone else feel like this and if so what have you found helps?

I was diagnosed with Bilateral Meniere's in May this year after over a year of struggling with constant vertigo, vomiting, feeling of blocked/plugged ears, constant tinnitus, and fluctuating reduction in hearing with changing tone discrimination. Some days I was unable to hear my wife or youngest son, others days they were all I could hear. My Dr. kept telling me that I had ear infections and food poisoning... then I found a new Dr who actually listened and pointed me towards a really good ENT.

I had 5 really really bad episodes between May 2023 and October 2023 where I would wake up in a cold sweet, vertigo so bad that I had to get my 11 year old son just to help me walk to the bathroom where I spent 3 to 4 hours vomiting off and on and laying in the floor. Several times I literally blacked out. Everything was constantly spinning no matter how I positioned myself. Each time I felt so weak that I couldn't even move. Then the lethargy set in for almost 72 hours each time. Tbh each time I had an episode I felt like I was dying, sounds dramatic but it is how I felt. Depression and anxiety also rear their ugly little heads... wife and kids try their best to help me combat those 2 demons...

In March of this 2024 I was driving home from work (almost an hour and a half drive) after a night shift when I felt an episode coming on. Thankfully there was little to no traffic and I was able to pull into a store parking lot. Had to call my wife and father-in-law to come get me. Episode continued for 5 hours... vomited 12 times within 30 minutes. I let my manager at work know about the episode and was told not to come back to work until my Dr cleared me... been out on STD/LTD ever since.

After months and months of testing and possible theories my ENT diagnosed me with Bilateral Meniere's and got me on a medication regimen that helps, doesn't solve my issues but helps give me some sense of reclaiming my life from before all of this. I still have a few days here and there where bad episodes creep in... like this morning.

In addition to the medicines and Meclizine (when it's needed) I am also taking Magnesium and Ginger Root supplements. I have also cut out all caffeine and severely limited my salt intake.

Does anyone have any advice or suggestions on anything else I could do? How do you cope with those bad episodes?

Hi all.

I've had tinnitus since I was around 15 (Now 32) ln February I developed hyperacusis to certain sounds, which has got better than it was but is still there.

Lately I've been feeling weird, my left ear feels how I can describe as an airy feeling compared to my right, and when walking sometimes I will feel a bit spaced out but not dizzy to the point it affects my balance.

Certain sounds will also make me feel spaced out and a bit panicky.

Is this the onset of menieres or something else?

Hello fellow bearers of this unfortunate particular destiny of human experience.

Allow me to ask, how many of you are there who, like me, live with ongoing vertigo or dizziness at least daily?

How many of you have other continuous symptoms though no clear typical Meniere's crisis (the full symptom constellation) is present?

How long have you had those symptoms for?

I'm a 35 year old male, hailing from Brazil. Have had the disease for 10 years. First four years were kindergarten compared to what the disease is today. I'm a physician and psychiatrist. I have had continuous vertigo and/or dizziness burden ranging from mild to absolutely incapacitanting daily for the past 6 years.

About 8 in 10 of the best ENT specialists my country has to offer, who I've consulted with, refuse the notion meniere's can produce ongoing symptoms outside of a typical crisis.

I, however, know it in my heart, threefold from my own disease experience, my own medical knowledge of physiology and pathophysiology, and from that which I've seen both on patients I've cared for and from reading this community's testimonials, that it can, and often does produce continuous symptoms.

It absolutely pains me to see such misinformation and lack of comprehension amongst those who, in fact, should know better.

I kindly entice you to share your experiences here, if you so feel like it should be appropriate. It is always reassuring and enlightening to find voices who speak of a suffering that bears resemblance to the likes of mine.

Hey Everyone, wanted to share my experiences.

In the past few years, I’ve occasionally dealt with ear fullness in my left ear along with some gradual tinnitus. These symptoms usually cleared up after a few days and weren’t a major bother. Earlier this year (in March), during a “flare-up” of these symptoms, I experienced slight vertigo. It wasn’t unbearable, just a strange new feeling I chocked it up to not enough sleep.

Fast forward to September: I had been dealing with tinnitus and ear fullness for a few weeks when, at the end of the month, I woke up with debilitating vertigo. I couldn’t get out of bed without feeling like I was going to fall over. Walking felt like I was rocking on a ship. I also had nystagmus and extremely high-pitched tinnitus. I went back to sleep, and after a few hours, it seemed to pass. For the rest of the day, I felt hungover but noticed something surprising—my hearing had completely returned, and the fullness and tinnitus were gone. Unfortunately, about a week later, the symptoms returned, and the cycle began again.

Since September, I’ve had three vertigo attacks. The last one, about a week ago in November, wasn’t as bad as the first two. After all three attacks, though, my hearing came back, and the tinnitus became almost unnoticeable again.

From my research, this seems to line up with a variant of Ménière’s Disease called Lermoyez Syndrome—or possibly Endolymphatic Hydrops, which I believe is similar but slightly different from Lermoyez.

A few notes:

ALCOHOL EXPERIMENT: The first big vertigo attack (in September) happened after I had alcohol that night. Since then, I’ve cut out alcohol and salt from my diet, but I did a small experiment afterward. When the fullness built up again, I wondered if alcohol might have triggered the “fluid release” buildup. That night, I had one beer, and sure enough, I woke up with vertigo. Afterward, the fullness and tinnitus disappeared again.

OMEGA-3: My third attack began less than an hour after taking a high “prescribed” dose of Omega-3 supplements. I’ve never taken them before and rarely eat fish, but I’d read they might help with Ménière’s. Once again, after the vertigo passed, the fullness and tinnitus disappeared.

ANXIETY: I've always struggled with severe anxiety, which seems to amplify all my symptoms. It makes me wonder if my constant fixation on the ear fullness, tinnitus, and vertigo might be contributing to the cycle repeating itself. And not properly letting any inflammation fully heal.

Would love to open a dialogue about what people think or if anyone has had similar experiences!

My coworkers don't understand what Meniere's is and when they Google it, Google makes it seem like it's something mild, so then they basically think I'm over-exaggerating my symptoms when I have an attack.

How would you describe the severity of it to someone who doesn't have it?

About 10 months ago, I had a wisdom tooth extracted from the upper left side. It turns out that from there, I started to develop symptoms of instability and pressure on the left side. I went to all kinds of doctors, until finally, I was seen by an otoneurologist, who did a series of tests, including an electrocochleography and it turned out that I have hydrops. I really don't know what to think, in January I will go back to find out what treatment I should take, because first of all, I went to a dentist, he diagnosed me with jaw problems, he gave me some oral medications, which only made my symptoms worse. So, I don't have any treatment today, I would like to know if anyone is going through something similar and what is done? ... Currently, I have symptoms on the left side of my head, pressure, sensitivity, tinnitus, instability that seems to come more from the left side, quality of life greatly diminished.

I’m curious when people say their Menieres goes into remission, is remission from Vertigo attacks and dizziness, or the other syptoms like ear fullness or both? For me I haven’t had Vertigo in over a year which I believe weight training and meds have helped, but I always have some level of muffled hearing and ear Fullness, does get annoying at work since I manage in a loud plant setting, but my employees pretty much understand that I’m hard of hearing and speak loudly, so not that big of a deal. I also wonder if shunt surgery helps with ear fullness, but it seems like a pretty invasive surgery from a video I saw so might not be worth getting done just for some ear fullness.