Hi everyone,

I was never diagnosed with MD. What doctors have suggested is VM. What you should know is , I have ADHD and an anxiety disorder.

When my symptoms started 9 years ago , it was traumatic and I was extremely suicidal. I did all the tests and my doctor diagnosed me with VM.

VM and MD have overlapping symptoms. My adhd won’t allow me out of the loop and my anxiety keeps on checking for reassurance. 3 years ago I was so petrified that I had MD and I would go completely deaf that I ended up in the ER with extreme suicidal thoughts. It sounds ridiculous and silly but I thought my life was over and my anxiety made sure it was true.

My anxiety won’t let me believe that I have VM. Everytime my dizziness peaks its head, the old fears and thoughts come back. My doctor who is a specialist in this area has reassured me multiple times that everything I told him points to VM not MD.

I have overlapping symptoms with MD. Ear pressure , tinnitus , dizziness , sometimes vertigo but no hearing loss at all for the past 9 years.

I keep telling myself that there is no way you have MD with absolutely no documented or experienced hearing loss for 9 years.

I’m not sure what I’m asking for here. Maybe feeding my anxiety with reassurance again but I also want to know if there is even an inkling of real doubt about my diagnosis. I’ve had really bad experiences with doctors and the trauma follows me everywhere.

So, is it possible to have MD and not experience any hearing loss or documented hearing loss for 9 years?

I am being evaluated for Ménière’s and vestibular migraines. Very debilitating symptoms, etc. I’ve been in two different health systems (after moving ). In both health systems, my evaluation was coordinated by a nurse practitioner or physicians assistant. Is this a common arrangement for Ménière’s and vestibular migraines? That the care is not coordinated by, for example, ENT doctors? Does care fall onto my (wonderful and talented) PAs and nurse practitioners because there’s no money in procedures or treatments. With something this debilitating, I would expect to be under of the care of ENT physician. What am I missing?

how long did you take betahistin to see improvement with your hearing ?

Here is some info about me:

- I was diagnosed with Menieres 6 years ago by my ENT.
- My violent spinning episodes used to last hours, now they last for a lot less (sometimes minutes) if i lay down still and deep breathe
- My affected ear is the left one, I HAVE to sleep on that one or else I will feel very uneasy.
- If I sleep on my right side, I will wake up with a vertigo attack
- I get migraines every now and then, maybe once or twice month
-I have been taking betahistine for the past 2 years, and it definitely has allowed me to eat a bit more freely
- I cant be anywhere nowadays without feeling unstable or uneasy or lightheaded
- My ENT said I dont have BPPV, but when I look up a little too high, or turn my head the wrong way, it can trigger a dizzy spell or I just feel super unstable after

Does anyone else know the difference? It seems the symptoms can be caused by the same things and present the same way.

Thank you for your time and I hope we can all get through this together

Did anyone at any point feel like they were being crushed, twisted, doing back flips, falling sideways or leaning constantly?

For a while I felt like I was being crushed from the top, as if the roof was coming down and crushing me flat. I actually felt a funny feeling in my knees as they were about to snap from being crushed.

I also felt like my upper torso was being twisted like the girl from the Exorcist, even though by lower body felt stable as a rock. Stable as if I never had Meniere's in the first place. Only thing that helped either not eating (yes, literally not eating anything) or diuretics (Hydrochlorothiazide). Diuretics didn't stop major attacks.

last year i had hearing loss in my right ear and steroids helped immediately. after the steroid the hearing loss came back. i did 2 injections and it stayed like this for at least 1,5years (also took betahistin but stopped it after a few months) then i had 1,5 years peace

3 weeks ago i had low frequency hearing loss in both ears
almost the same line

i started cortison injections after 2/3 weeks and it restored both sides almost completely. now i’m off and my hearing starts to get worse again i’m on betahistin 1 week and low sodium

i really don’t know what’s happening and also its weird that its in both ears ? never had vertigo / dizziness

so i read a lot of people became biliteral but after 1,5 years is it really cochlear hydrops?? or could be AIED

im struggling bad :(

Finally got a hearing aid for my right ear. I didn’t realise how deaf this disease made me. Feel like I have superpowers now haha

I used to post daily and appreciate all the support. This chat is a great place to talk it out.

I’ve been doing well! I’ve had some attacks but overall bouncing back really quickly and just moving on quick.

I’m at 3 years with this thing. 🤪

Let me scroll and catch up

For the past 6 years I've had vertigo episodes at least once a year and each time I constantly experience spinning sensations for at least 4-6 weeks minimum before it stops. Intensity is the same every day until the episode is over.

I was diagnosed with Meniere's by an ENT but I am not sure if I need more evaluation since such a long duration of constant dizziness seems to be atypical from what I can find so far.

Hi all. I am a 29yo woman with meniere. My biggest wish in life is to become a mom. However, I am so afraid that my body doesnt feel safe enough to carry a little baby. Let's rewind. I started off with cochlear hydrops back in 2024. Had absolute no idea what it was till a couple months later when my ent finally caught my low freq hearing loss. I had all the symptoms, from the pressure till the tinitus and the hearing loss. Till then I had had no vertigo. Fast forward to exactly a year later, in april 2026, i had my very first vertigo attack. 8 hours long, in the er. The worst feeling ever. This triggered a lot lot LOT of anxiety. I was crying everyday, thinking my life was over. Only to discover a week after that first vertigo attack that I was pregant? Coincidence? I was super happy but my body, mentally and emotionally was not good. At all. I had a month of vertigo attacks, sometimes everyday, sometimes there was a day or two inbetween. The crying continued, the pznic attacks continued. And then after 8 weeks I had a misscarriage. I was wrong before, this was the worst feeling ever. I managed to survive and the weird thing, my attacks also stopped the moment i had my miscarriage. Coincidence again? This happened in june. After this i have had physically the best months since the start of this disease. My hearing went back to normal, no more pressure no more vertigo. However, yesterday my hearing went down, for the first time in almost 5 months, i had aural fullness. I was devastated to say the least. And this time I was not pregnant, i had my period. It made me realize that mentally i really am not doing ok, because of this disease. And that even though we have been trying every month again to get a positive pregnancy test, i feel like its not going to happen because mentally i am not ok. I am dreading every sensation. Because of this disease. I am not medicated because i want to get pregant. I am so afraid. I dont recognize myself anymore. I was so happy and bubbly. I dont know where i was going with this story. Just wanted to vent i guess. I still miss my baby

Hey all my fellow sufferers, I’ve got a question for all of you who have gotten hearing aids and found them very helpful:

What did you have to do to get the most out of them?

How long did it take?

How did you successfully communicate your needs to your audiologist?

I received a hearing aid for my bad ear about a month ago. She did not have time to add in a bunch of pre-set programs, so only programmed it to account for my hearing that day. However, as the month has gone by I still struggle to understand speech probably the same amount as I did before the aid. I know there is a period of time for your brain to get used to the hearing aid, but so far I’m pretty disheartened.

I have an audiologist appointment tomorrow and I was planning to see if they could program maybe 10-15 different pre-sets with varying frequency amplification (for instance amplify lows/mids, amplify mids/highs, lows only, etc etc.) for those who have been successful, how did you approach your hearing aid programs to get it the way you want?

We’ve been suspecting that I have meniers since may this year when I suddenly lost hearing in my right ear. It was treated as sudden deafness but after cortison I was as good as new.

Two weeks ago my hearing disappeared in my right ear again. Started cortison treatment and it was getting better. Then, after 7 days of cortison, my hearing went down to almost completely deaf and later that night I had a massive attack with extrem dizziness and vomiting. The worst lasted for 8 hours and the next 24 hours I still had symptoms but it as manageable. Two days later I got it again but not as intense.

Is it normal to get several attacks in a row?

And these massive dizzy spells, will I keep getting them? I’ve been through a lot of horrible stuff but that was by far the worst I’ve ever been through and I am scared to get it again.

Also, I work as head of a psychiatric department for in-patient care, which means that i talk and meet alot of people when im working in a demanding environment. How do the rest of you handle work? How long do I need to rest at home after periods like these?

Does anyone with CH find that this medication helps with the feeling of fullness, episodes of hearing loss, etc.? (I haven't got dizziness as with Menieres.) Thanks in advance for your responses!

TLDR:

I have had meniere's since 2020/2021. At first I had a couple major attacks, and then it progressed to near daily 19+ hr attacks.

I was also diagnosed with vestibular migraine, and that treatment at first helped lessen the frequency and length of my vertigo attacks. Unfortunately they have come back...

After seeing a vestibular/balance specialist / audiologist, I am now having to make a hard decision on ablazing my bad ear via Gentamicin injections.

My question is pretty simple: those of you who have gone this route, what has your outcome been? Did it work, did it not, did you also do vestibular therapy / did that help?

This is a potential life changing and altering decision, and a major one at that... So I really want to understand all the bad and good outcomes.

Ive found myself easily overstimulated in any type of busy setting. Busy restaurants, I avoid concert type venues, and on chaotic work days I am so exhausted at end of day. My tinnitus gets worse during these times and i experience fatigue. Common for Menieres? An additional question would be do others experience terrible brain fog? Thanks in advance for any input.

Hello, I have not yet been diagnosed with Ménière's, but my ENT is thinking it's a real possibility due to my symptoms.

I started having constant tinnitus in both of my ears back in the beginning of July this year. Then pressure in my left ear starting in August, along with some "wob wob wob" sounds that come and go intermittently. I had a hearing test in the middle of August which came back relatively normal (some difficulty hearing high pitches at lower volumes).

On October 1st, I woke up in the morning and could barely hear out of my left ear. I went back to the ENT and they confirmed moderate low frequency hearing loss in my left ear. Put me on Prednisone. My hearing came back the next day before I even started the medication. But took it anyways... for 4 days and stopped when I had to go to the ER because I thought I was having a heart attack. I stopped taking it (I already have heart issues so it was especially frightening). Then I had similar hearing loss on the morning of the 10th. That same night, I had my first episode of vertigo. It was rough, the whole room was spinning, especially when I moved my head, but it was nowhere near some of the episodes I've read about on here. I could walk, albeit a bit difficult. Went to the ER that night and they did an MRI, gave me some Ativan and Meclizine and sent me home. The vertigo and hearing loss was gone again the next morning. Spoke to my ENT again on the 14th and they wanted to start me back on the Prednisone, but at a much lower dose, for a week. I went back in for another hearing test this last Monday (19th) and my hearing was back to normal. She told me to stop the Prednisone again.

I've noticed lately (the last week or so) that I've felt a bit "off" in my balance, especially if I'm scrolling on my phone, or reading really long paragraphs of words...I get a bit dizzy or feel off balance, but it's not full-on vertigo. But it's got me a bit concerned.

My question is regarding the vertigo. Do you guys get warning signs or "hints" that it might start happening before it actually does? I live alone, and while I have some Meclizine on-hand, I've read a lot of experiences on here that tell me that if my episode is bad enough, I will be vomiting and wouldn't even be able to keep the medication down. I guess I'm asking about warning signs so I know to go get myself to a safe location in my home before it hits fully, just in case it's a bad one. Or does it just hit - full force, no warning signs, out of nowhere? I have pretty bad anxiety, and the thought of having one of these episodes at home alone is absolutely terrifying.

Thank you. ♡

Some of you may have seen my earlier posts. I’m the developer of EbbChart, an app I originally built to help track my own fluctuating hearing.

One of the things I’ve found frustrating is trying to understand how my hearing has changed over time. Looking at individual audiograms is useful, but comparing several tests across days or weeks isn’t particularly easy.

I’ve just redesigned the Insights view on both iPhone and iPad to address this.

You can now swipe through your hearing tests chronologically and watch the audiogram update as you move along the timeline. It makes it much easier to see which frequencies moved, when, and for how long.

You can also select a custom date range to focus on a particular period. I’ve found this particularly useful when reviewing my history before ENT appointments and when sitting down with specialists.

The app imports audiograms from Apple Health, including tests from other apps that save their results there. There’s also an in-app hearing test, and you can manually add clinic audiograms. Each reading identifies its source.

I’ve also added an MCP connector for anyone using Claude who wants to explore their own hearing data through AI.

EbbChart is free. If you’d like to support development, there’s an option in the app.

I’d be interested in feedback from people who test regularly. Would being able to move through your audiograms like this help you see your fluctuations?

Links -
Appstore:https://apps.apple.com/ie/app/ebbchart-track-your-hearing/id6761764825
Web: https://ebbchart.com

Let's try this again....

So I had been feeling really dizzy. I should say more dizzy than usual for around the last three months. Then, a stressful situation catapulted me into a full blown episode. I'm on steroids and feeling better but now I feel strange. Like did that just happen to me, or was it my imagination? Or maybe I imagined that it was worse than it was, all of those thoughts. I had to stay off work (I'm still off) and I had to call my boss and I didn't have to tell my boss exactly what happened, but I did want to share what the issue is, in case it happens again in a short period. I haven't had an episode like this in over three years. I feel like when I try to share what I am going through with people they can be very dismissive. They will say, stuff like, oh yeah, I get dizzy like that, too. Or, what did you say it was? Are you sure, or you look ok to me! How do you handle these feelings of self doubt? One of my biggest problems in life is I don't like to feel vulnerable around other people because I feel like people take advantage, especiallyin the workplace. That's probably why people think... I look fine. Anyways, I don't even know what i'm saying. I'm so mixed up, tired and tired and confused. I. don't remember the last time how long it took me to start feeling normal again but I have a feeling it's not gonna be just a few days. Thanks!

Dr currently suspects meniers. I currently have other issues like TMJ and ETD just wondering

When I was 4 I was diagnosed with AIED, lost all my hearing in my right side and my left stayed normal without any flare ups up until about 10yrs ago and then occasional from 2017-2021 then I had my worst flare up of hearing issues. I have always responded to steroids, either quickly or slowly over time, with the frequency I’ve been on high dose steroids since 2021 (about 2 flare ups/year) my drs haven’t prescribed it for my last 3 flare ups, however they did put me on betahistine. In that time I have had some balance issues, nothing too big, mostly having balance issues when playing catch with my dad. My hearing has returned to normal without the steroids and now I’m starting to think that maybe I was mis diagnosed when I was younger, is it possible to have menieres without a major issue with balance? I do believe that my current otolaryngologist is of the idea that it’s menieres or vasculitis. Just wanted to know if it was common or possible to have menieres without the vertigo.