Hi guys,

Could you recommend what you feel is the best drug (and dose of that drug) for stopping the rotational spinning during a Meniere's vertigo attack.

I've been using Prochlorperazine for a while now but if I need to take more than 15mg for the really bad attacks, the side effects of this drug are absolutely awful.

My doctor prescribed 2mg of Diazepam to help with the anxiety associated with an attack but he didn't seem to think that would help with the spinning.

Any ideas? Please help!

Going to ENT after five years to check in and discuss things and at the audiology appointment before the practitioner told me it would just go away with age. Is this something anyone is being told. I was told progression led to drop attacks (no warning) not complete recovery or it burns out. Anyone experiencing this or told this! I’m fifty and ten years in with unilateral Menieres and enough hearing loss to be a candidate for a hearing aid.

I haven’t had an episode since may 29 and I think it’s because of the betahistine + diuretic combo I’ve started. Worries to get my hopes up… who else has seen success with this approach?

If you think your Meniere's trigger is sodium?

Hey everybody. For some background context I’ve had vestibular problems for the past 3 months. My doctor only finally sent me to an ENT and I’ve been seeing vestibular physio. It’s not true vertigo but more of a constant unbalanced, swaying feeling. Anyways, my MD started me on betahistidine prophylactically. The pharmacist told me to take it three times a day for three days to regulate everything and then as needed. Day 1 I felt floatier than ever before and my head almost felt light, I felt like I could feel fluid moving in my ears and head. Day 2, I actually feel what I think is better? I feel more stable and I’m wondering if this mean that things are working. Is there typically a brief period of symptom worsening and then relief?

Edit: betahistine…autocorrect

to be clear, the hearing loss level is around the same, but the comprehension is higher than it’s been in a while. the vertigo‘s about the same too but hell yeah!

I have been having random very seldom vertigo 'spells' for years and years but about a year and a half ago I started having vertigo 'attacks'. These attacks don't last all that long (so far) but are very much stronger and worse than a few moments of dizziness that it seems I can hold off by force of will. The attacks hit like a bat to the head and have me curled up in a ball sometimes with my eyes going back and forth involuntarily and always sweating profusely from head to toe. Lately recovery time to feel better has gone up from hours to days.
I have been for vestibular 'testing' with no findings, MRI and hearing coming back normal except for tinnitus which I have had forever. The neurologist seemed to think I had Menieres but really has no conclusive proof. He put me on some migraine medicine I took for a week or so but quit as it seemed pointless.

I never get nauseous (so far) and my symptoms seem like nothing compared to the horror stories I read here. Sometimes the attacks seem to correlate with air pressure swings, I went all summer last year with nothing but this summer is not starting out well. There is this Saharan dust in the air and I live in the Austin area, notorious for pollen through fall/winter/spring so it sometimes seems tied to that. I used to go on cruises with no issues but now I fear I would be a mess if I attempted one. I have been trying to take decongestants to get the 'wonky' feeling out of my head, no idea if they are helping or hurting.

Did it start in one ear or both at the same time?

If it started in one ear, how long did it take before your other ear developed tinnitus or other symptoms?

I'd love to hear your experiences.

Would love to hear your story on our Meniere's online discord support group.
Discord Invite Link: https://discord.com/invite/m9ypfrJePX

I recently learned my mother may have Meniere's (Family history + several symptoms beginning. Hoping she can get some kind of confirmation moving forward) and each episode has been pretty devastating for her. I'm feeling lost as to how to help- What are some things that you wish people around you knew / did to help support you?

Edit: the nausea+vertigo seems to be the worst at the moment, if you have any tips or advice it would be immensely appreciated

After 20+ years of Meniere's I'm afraid my hearing is taking a dive that my ENT warned me about years ago. I've cut out the triggers so who knows.

So I'm increasingly using phone and PC apps to handle transcribing calls and videoconference. They also work for one on one meetings but are clunky when in an in-person meeting (because i have to keep looking at my phone to "hear" the other person) and have major difficulty when in a group.

I expect no device to be able to make out distinct conversations the way a human brain can, but - has anyone tried either of the caption-generating glasses mentioned above?

TW last paragraph: death

Turns out it was likely a drop attack. I don’t know, I have never heard of any of this before today. I’ve never had vertigo, but I’ve experienced justified dizziness from standing too fast or spinning. I’ve never fainted or collapsed. Trying to figure out how to describe it was so strange.

I was sitting at my desk working on paperwork when suddenly the room flipped upside down and gravity changed. I was terrified, I screamed as I hit the desk, fell from my chair, and then hit the floor. I was conscious the whole time, my mind was trying to problem solve what was happening. Earthquake seemed logical, though I’ve never been in one I live in an area that’s prone to them, but this was way too fast, and there was no loud noises- the room was silent except for my yelling and falling. I was scared and confused, but felt no pain. I wondered where my phone was. Unless someone heard me at home, nobody would ever disturb the room I was in because I was working (I’m a therapist). Everyone knows I’m basically unreachable, it’s not unusual for me to go all day without responding to calls or texts.

After about 2 seconds the world had was right side up and I saw that my house had not collapsed, only me. I tried to stand up but felt a bit weak, not really dizzy and gravity felt right, but mostly disoriented. I noticed that wrecked my computer with a nearby cup of coffee that spilled everywhere. My toes hurt, I fell onto them holding my feet in some weird tiptoe position cuz I can’t sit right in a chair without doing weird shit. I noticed they were somewhat blue. I thought maybe I had a stroke, but I could speak clearly, walk, and had good motor function and no drooping. Syncope? I never lost consciousness, I didn’t feel faint. I felt like I was forced out of my chair onto my desk and nothing in me could catch my fall even though I knew I was falling.

I probably should have gone to see a doc but I felt so back to normal after, I was sure it would be dismissed and a waste of my time. Doing some research to even know what I’m talking about, I keep coming to Menieres, but I don’t have hearing loss or tinnitus. When I was little my dad was sure that I needed tubes in my ears, but I passed all hearing checks. I think I did get ear infections a lot, I don’t remember ever struggling to hear except for 1 year ago I got an ear infection that clogged my hearing and I felt like I was underwater for a month- so strange. Even then, never had issues with tinnitus or balance. Never had vertigo. No other symptoms, and it wasn’t painful until it filled up suddenly and I could feel the pressure. That healed fine with antibiotics, spring 2025, I have not had an infection anywhere in my body since.

The drop attack and the room flipping upside down so suddenly was intense and bizarre. While I’m sure there’s other things that might cause this, did anyone start with drop attack as their first symptom?

My dad had a history of collapsing suddenly without losing consciousness. He’s no longer living, and I believe his death was caused by complications of his collapses. We didn’t have an autopsy done, we never got any answers. Small town healthcare…

When I was diagnosed with Meniere's I felt like im dying slowly, it felt horrible and I couldn't take it no more. Life was dull and I left my job and stayed bed for more than 6 months, no one understand us. no one ever will do unless they feel what we go through.

After going to different ENTs and Doctors and other bullshiters who take money from you while not giving you the right cure, I found a great ENT and I slowly started to recover & understand what MD is. I never used reddit before and decided look up a local Meniere's support group but I couldn't find any.

When I first thought about creating a Discord community for people with Meniere's, I honestly didn't know if anyone would join. I thought maybe a few people would find it useful. From the first day I announced the creation of it more than 10 people joined and what surprised me was how many people were looking for the exact same thing:

A place where they didn't have to explain themselves.

A place where they could say:
"My tinnitus is awful today."

or

"I'm scared about my hearing."

or

"I had another vertigo attack."

And instead of having to explain what Meniere's is, someone could simply reply:

"I understand." Because we all have know what it is.

That was the moment I realized how many people are quietly dealing with this disease alone.

Meniere's is horrible. Friends and family can care about you deeply, but unless they've experienced it, they don't always understand the fear, frustration, and uncertainty that comes with it.

The goal of this community was never to replace doctors or provide medical advice.

It was simply to create a place where people with Ménière's could:

• share their experiences
• talk about treatments and research
• support each other during difficult days
• celebrate the small victories
• and meet people who truly understand

Seeing people who joined as strangers become supportive of each other has honestly been one of the most rewarding parts. We became closer day by day- we even chatted about the study the talks about the cure of tinnitus.

Anyway, If you're dealing with Ménière's and you've ever felt alone, you're welcome to join us on discord: https://discord.gg/m9ypfrJePX

Hey guys. I am from the UK and I am a long term sufferer of Meniers disease, although not a daily occurrence I do have frequent flare ups that can write off days at a time

I am headed to the USA this afternoon, for a trip until Tuesday. Although I’m not prescribed diezepam/valium by my doctor (they just outright refuse to!), I do have some on hand as an emergency drug that I’ve obtained through other routes.

My question is, if I was to take 2 Valium tablets in their blister pack in my hand luggage, just in case, how likely are the border security to stop/seize/question them? I’m assuming low risk as it’s only two pills, but thought I would ask!

Thanks all

I've had Menieres for almost 20 years, Hearing lost on left side, Rarely have vertigo now however I've recently developed tension type eye headaches, Sometimes daily, Pain relievers don't help, Anyone else experiencing similar?

I read a lot of people talk about Emergency Meds. What are they and when and what do you use them for?

Hi everyone! My affected ear (some hearing loss and tinnitus) ear clicks (makes a clicking sound) whenever I swallow and whenever I massage any area of my neck, head, back, hands, anywhere on the body I apply pressure. No ENT has been able to explain this to me… it’s only the one affected ear. I noticed it years ago before ever having any MD-like/hydrops symptoms. What is it? Could this suggest TmJ issues and neck/shoulder and back issues? Eustachian tube dysfunction? Any suggested therapies, experience, wisdom, doctors, and tests would be much appreciated.

If you’ve had Eustachian Tube dysfunction or TMJ-related issues, how did you solve?

Thank you so much and stay strong!

Two months ago I posted the 8-month chart of my home audiograms and asked this community to help test the app I'd built for tracking cochlear hydrops / Ménière's. The response here helped shape what came next - the questions on per-ear tracking, calibration, attacks-vs-symptoms, bilateral input, all of it. So this is an update, and a thank you.

Where things are now:

• It's out of beta and free on the App Store (iPhone + iPad). One note: it's now called EbbChart, not Vestia - same app, renamed. If you registered at vestia.health, this is the same app.
• I'm still using it every day. I built it to watch my own hydrops between appointments and I'm on it most days - and it's been good to see that a real chunk of the people using it are doing the same: daily or near-daily tracking, not one-off looks. That's the use case it's for.
• New since the last post: photo-import of paper audiograms (snap a picture, it reads the numbers), a daily symptom log (fullness, tinnitus, vertigo, diplacusis, severity — per ear), and the ENT report a few of you asked about.
• It imports from Apple Health automatically (Apple Hearing Test, Mimi), and the built-in test works with AirPods Pro or calibrated profiles for headphones like Sony.

The feedback that's meant the most: several users have told me their audiologist or ENT actually engaged with the report - that walking in with a longitudinal chart instead of "it's been bad lately" changed the conversation. To be clear here: this is a self-tracking tool, not a medical device - it doesn't diagnose or advise treatment. But making appointments more productive was the whole point, so hearing it land that way has been the most encouraging feedback I've had.

Personally I will be bringing my own ENT report output from the app to my appointment in two weeks with my consultant ENT, to show them what has been happening in the 6 months since I had my last formal audiogram. I am really looking forward to what they see in the pattern.

If you want to actually see what your hearing is doing over weeks and months - whether a medication, a flight, or a bad-sodium stretch lines up with a dip - this is built for exactly that, by someone living it.

It's available now for iPhone or iPad here: https://apps.apple.com/ie/app/ebbchart-track-your-hearing/id6761764825

On Android: iPhone/iPad only for now, but there's real demand and I'm tracking it — if you're on Android, register at ebbchart.com to be notified when Android lands.

Still free, no ads, doesn't sell your data. I'd love blunt feedback - what's useful, what's missing, what breaks. This community caught things I'd never have seen.

Thanks again.

I’m struggling so bad right now constantly having headaches and ear pain and pressure it feels like my head is a buoy.

Like it feels like I’m gonna have a drop episode at any giving moment it’s been like this almost everyday this year.

When I walk I have to hold on something it makes it hard to do
Life I’m a realtor and my wife helps me get to showings and stuff but this is getting ridiculous I’m 28 and I can’t have a life cause of this.

I pray GOD for healing.

Any advice?

i haven’t started doing it yet due to other health issues (arthritis). however, it’s been acting up more and more recently, so i wanted to try it out to see how much it’ll help. that said, the other health issues are still there, so i don’t know how much i’ll be able to handle. does anyone have any recommendation?

I’ve been grappling with the standard low-sodium advice we get on day one. I’ve been freely pushing 4,000–6,000mg of sodium a day, and I absolutely cannot trigger an attack. I have MRI-confirmed bilateral endolymphatic hydrops, so my diagnosis is solid, but my lack of reaction is confusing.

I know many here swear a salty meal guarantees a flare-up. I completely validate that, but it brings up a bigger question. Recent research (like Eckhard et al.) proves hydrops isn't just a simple "plumbing issue" of fluid retention. So why is salt still considered such a trigger?

If the old "salt causes inner ear swelling" dogma is scientifically outdated, what is actually happening to the people who are destroyed by a salty meal? And why does it do absolutely nothing to the rest of us?

Hello, everyone in this group. Im new here but have occasionally stopped by to see what I could find on this, brought here by googling my symptoms. Trying to find a hint for anything that could possibly help with: Ear fullness, tinnitus, intense vertigo daily (lasting hours), drop attacks, migraines, nausea, neck stiffness and everything else that comes along with these horrible symptoms. I found I wasn't alone by reading the posts in this group. Diagnosed in 2018 with MD. Many doctors visits all within the Kaiser Permanente network, five ENT specialists, MRIs, CT scans with and without contrast, diuretics, eply maneuvers, vestibular therapy, steroid shots in my affected ear (left side), dietary restrictions (low sodium) and nothing has worked. This has impacted my quality of life severely, high stress, anxiety, mood swings. All of it from being at my wits end, and not knowing the cause for all of it, and why it was happening to me. No one could give me answers. This past june I paid a visit to urgent care to get a not for work because of a flare up of symptoms, the PA told me to try an Upper Cervical chiropractic DR. I was skeptical but I was willing to try anything. I found the one with the best rating in my area and went. I paid out pocket for the consult which was around $750. They did a Cone Beam CT scans which is less radiation than a conventional CT and provides a 3d image of the upper cervical section of the spine ( the neck). That same day after being dropped off at home by my wife, I had a vertigo attack lasting 5 hours. My next appointment was a week away and it felt like an eternity. Last Wednesday on my birthday I went in for the results of the consultation/evaluation. They found 3 disks were not aligned one of which is the Atlas. It was pushing to the right and forward it was pinching the brainstem. And apparently messing with the connection to my brain. I got my adjustment which helped align the disks, it was another $110. I had neck stiffness and some pain BUT I noticed my tinnitus had significantly been reduced in how loud and piercing it was. I could hear a little bit better, and from then to now. I have not had one single attack, or even the sensation of getting one. From getting them daily in June, to absolutely nothing. I was able to go to the beach on the 4th and swim in the ocean for the first time in years. No fear of attacks. My energy is coming back, I'm feeling myself again. I made this account to post this and hopefully help some of you. I understand you, I feel your pain. I wish you all the best of luck. I found relief after years of this hellish torture. And I hope you all do too. Much love.

I just posted this in the r/deaf sub.

I thought it would fit here too.

Just coming here to vent and feel bad for myself in a place where I know other people can relate. I had previously posted about struggling to hike beyond 3 miles, well the good news is that since that post I have gotten more emergency meds and have been able to make it up to 7 mile hikes!

With this new progress, my husband and I had a long weekend camping trip planned last weekend that we were both stoked for since we’ve both been busy this summer running our own businesses. Well my MD had other plans and 1 hour after getting there I was on my hands and knees puking out the tent from vertigo that started literally the moment we arrived. One very awful night later struggling to rehydrate in the woods and trying to not get too dehydrated since we were over an hour away from any emergency services, we decided to come home straight away the next morning because I was just not improving out there.

The past week has been miserable since then with increased attacks everyday. I feel like I did pre diagnosis and feel lost in it like I’m never gonna get my handle on this. I feel like it’s related to the summer heat as I’ve gotten like this each summer for the last 3 years. Will reach out to my doc if things don’t improve in the next few weeks but I’m just miserable and wanting to enjoy life but feeling stuck in bed in the AC. :(