If you're reading this, I'm sorry you're here and going through this terrible "disease". I promise it gets better and it becomes more manageable. We tend to work our lives around this. Everyone is different and I'm just sharing part of my story that has recently come to light.

Now onto something that had recently come up at work (I work in healthcare) and some background information. I've been having a "flare up" of menieres and vestibular migraine symptoms, but have only truly been diagnosed with menieres. Prior to Covid, I had my symptoms under control and was able to eat whatever I wanted, but lived a generally healthy lifestyle. Also as someone that works in a major healthcare facility they have started mandating flu vaccines. I have always opted out of getting them until they started mandating us to get them yearly and a simple doctors note was no longer enough.

November 2021 I was given flu vaccine (normal vaccine) then in December 2021 I had my first infection of Covid 19. By January 2022 I was having a flare up of similar symptoms that I am having today. Symptoms ranging from severe vertigo (think drop attacks), slight dizziness, ringing in the ears, ear fullness, migraine, light sensitivity, and sound sensitivity. The drop attacks and any sort of vertigo would last seconds up to a minute at most. I was given a single IT steroid injection (that's what controls my MD). It didn't stop any of the vertigo I was having, but I simply would wait it out because back then I was worried that if I continued steroid injections they would one day not work at all for me. These symptoms would last till April-May 2022. Things would be under control after that.

July 2022- I get my second Covid infection and yet continued to have menieres symptoms under control.

November 2022, I decided to try to go vegan and vegetarian for awhile to see if I could eat healthier and improve some other health issues. I opted to get egg free flu vaccine. No issues and continued to have symptoms under control.

November 2023, I go to get flu vaccine and planned to get egg free version as I did previous year. I'm no longer eating vegan or vegetarian but have continued to eat a healthy lifestyle and work on just eating a balanced diet. The nurse decides to tell me I should get regular version of flu vaccine because egg free version actually has more "live" virus in it. So I take her advice and get the regular version as I did in 2021. By January 2024, my symptoms are back out of control. All the previous symptoms as I did in 2021 except I had also aura with migraine. February 2024, I received another single steroid IT injection. I also stopped hormonal birth control (due to having aura). Only thing resolved was aura and ear fullness.

It's now May and I feel my symptoms are finally starting to resolve once again. It've been over a week since I've had a drop attack. It's been 4 months since I've drove a car. I'm 4 sessions into physical therapy. Have had 1 perfect brain MRI. 3 failed migraine medications and 2 other medications I have not yet tried due to wanting to wait it out.
My coworker decides to ask me about the flu vaccine and if I had it. She has severe vertigo from her flu vaccine (she doesn't have MD). This is how I have linked all this together. I will not be getting the flu vaccine anymore. I'm guessing it creates an uptick of inflammation in my body. 2025, I will fight to decline it and see if I have the same reaction next year.

We are all in charge of our health- we have to advocate for ourselves in what we feel is right for our own situation.

I'm not here to tell you to get it or not to. This is just my encounter with it. I'm not pro vaccine nor anti vaccine. I'm curious to know if anyone else here has a similar pattern of symptoms returning after vaccines or any medications? This is just some food for thought for those of you out there that are doing everything right but still not sure what's going on.

Hi all, sorry if this is a lazy question/answered elsewhere, but I am just curious if anyone has had their hearing bounce back after more than, say, six months?

My rough timeline:

August 2023: Bilateral Meniere’s diagnosis, but only left ear showing symptoms (hearing loss, dizziness, vertigo). It has luckily only ever been my left ear throughout.

October 2023: left ear hearing returned, dizziness/vertigo mostly under control with sleep and other measures.

December 2023: left ear hearing loss returned, daily tinnitus, daily dizziness, occasional vertigo.

January 2024: betahistine 48 mg 3x per day. Daily dizziness mostly abated.

February 2024: steroid injections in left ear. 3x over the course of one week. I think there was initial improvement but nothing too lasting.

May 2024: my hearing in my left ear is pretty poor. If I plug my right I generally cannot hear conversation. The dizziness is mostly gone away with enough betahistine, for which I am ETERNALLY GRATEFUL.

Ok, question time.

1. Given that my hearing has gotten worse since February (and did not snap back like it did the first time it went away) is it more likely that it will not snap back?
2. Is there any type of length of time threshold for which it doesn’t come back (i.e., if it is gone for six months, is it just gone)?
3. Has anyone have it come back after 1, 3, 5, or even 15 years?
4. Has anything specific helped anyone with this (other than standard sleep, no stress, no caffeine, no alcohol, JOH, etc.)?

Just trying to set expectations (for myself).

Again apologies if this is a lazy post, but as always I appreciate all of you and your help very very much!!

TL;DR: if I’ve lost hearing in one of my ears for 3+ months is it likely that it’s gone for good?

CHEERS

I (25f) had a hellish week about 4 years ago. First time I ever experienced anything similar to Meniere’s and pretty much every medical professional I saw about it rolled their eyes (metaphorically). The first night it happened I went to the ER and the doctor told me sometimes people feel anxious and it was all just in my head. I went home and felt so stupid and embarrassed.

But then it happened again. And again.

Thankfully, one day it happened on my way to work where I was a receptionist at a university speech and hearing clinic. My boss, an audiologist, ran some tests and said she couldn’t give me definitive answers since she specializes in the outer ear but she said that I was exhibiting nystagmus.

There was also an audiology student there who has Meniere’s and he was extremely validating.

My boss referred me to a neurologist (if I remember correctly) but she didn’t seem to really believe me. She said she couldn’t diagnose me without me having an episode in front of her anyway lol.

Anyway, it’s been four years since then and I’ve only had one other episode and it was nothing compared to that first week. Still, it was not fun.

Sometimes though, my hearing will drop in my right ear (my bad ear) and I’ll get that queasy feeling. I’ll hear some ringing and then after less than ten seconds, it’ll be over.

It’s been happening more frequently lately and I don’t know what I should do about it. I know that sometimes people will have a random episode when they’re young and then when they’re older, it will hit them like a truck. Now I just feel like I’m waiting.

Mt Sinai Hearing and balance and Menieres.

Gentamicin is an antibiotic that is toxic (poisonous) to the cells of the inner ear. By selectively targeting the specialized cells of the balance organ, gentamicin can reduce the incidence of vertigo while preserving hearing in the ear. The effect of gentamicin injections is permanent—once the balance function (or hearing) is lost in that ear it does not return.

Have to give up on this group. Can’t believe so many do not take injections that work 80% in one study 70% on another. There is no easy way out. An old saying “ya can lead a horse to water but can’t make em drink it. Good luck folks.

I have had Meniere’s for 15 years. In the last year, as I enter perimenopause my attacks have been more frequent although less intense. My doctor recommended low dose birth control. Anyone have experience with this and seen improvements?

Has anyone experienced very easily-triggered cramping, mostly legs and some arms? If I move my legs wrong I can be certain of cramping up, it's horrible. I'm assuming this is a low-salt thing? Does anything help?

So my ear problems began back around November. It was only occasional ear fullness back then, usually only around the evening, but then things took a really bad turn around January when I traveled for work. I spent at least a month and a half with the most horrific ear fullness I've ever experienced, as well as a cold that wouldn't go away. I then got back home and went on a hiatus to find out what exactly was causing my ear fullness and my eye twitching, which back then wasn't as horrible as it is now. I then began visiting several different ENTs, two of whom suggested that I had a severe case of TMJ because of my bad overbite. They recommended that I fix my bite, which I quickly began doing with invisalign, which I started in April. I'm also seeing a chiropractor who is treating my upper and lower neck discs, which legit makes me feel absolutely horrible every time I have to get it done. It's been a month and I sometimes feel worse than I initially felt and I'm beginning to lose all hope for recovery. I have to keep my aligners in my mouth as much as possible in order to avoid my hearing from lowering. Driving in a car is absolute he'll because the pressure that builds up in my ears is unbearable and it causes me to get nervous and makes my eye twitch and also causes blurriness. I'm super confused because I still do not know if I have an undiagnosed Menieres case. Every ENT I have been to has been very quick to turn down that diagnosis. I really hate this and don't know what to do anymore. Please share your thoughts and opinions!

I’m training to return to work after Meniere’s surgery doing virtual, which would involve 3-4 long zoom-type meetings daily and the use of earbuds or Bluetooth. After three hours of this type training last week, my ears rang badly and I had to fight off vertigo attacks. Lasted several days. I know if I scroll through my phone or read on it or my tablet too long, it triggers vertigo. Also talking on the phone too long, with or without earbuds or Bluetooth. The two combined seems to be an issue, though it may not hit me for a few hours. Longterm Menieres here; had the endolymphatic shunt 34 years ago, and after zero problems til two years ago, I ended up with a mastoid bone infection at the old shunt, misdiagnosed as plain Meniere’s until surgery over a year later. Six months after surgery, lots of loud ringing (both ears now) and trying to return to work. So I might be a bit different from most with Menieres. Just wondering if the phone/screen and sound issues are experienced by others as well.

Diagnosed as possible MD 2 months ago. Went through hearing tests and mri, hoping for a removable explanations but nothing was found.

Started about 15 months ago and I have had some longer term experience with ear plugged feeling and ringing but can only report maybe a single episode of dizziness or vertigo.

The ringing and plugged feeling seem to linger for several weeks at a before they stop bugging me as much and the last stint seemed to have been brought on by a sinus cold. 9 days since the onset and I still have pressure and strong ringing, but no vertigo.

I haven’t read about MD without seeing dizziness as a primary symptom, does anybody have a similar situation?

Maybe I’m just grasping at straws trying to find a way it could be something else .

Thanks for your time and your help,

Does anyone have month in between a series of closely placed attacks. It’s been about 4 months and now it’s starting over again. So fun.

I’m curious if anyone else gets this symptom. It’s so hard to describe. It basically feels like I’m having an out of body experience. Like the world takes on this dream-like quality where nothing feels quite real. I’m functioning like normal, if not a little unnerved, but almost hearing myself talk and hoping I’m not saying anything weird. It just seems so bizarre, and it’s so hard to describe, so I don’t really talk about it. I feel silly even now, re-reading what I’ve written. It occurred to me it may be migraines as well. Does anyone else get this? Is this what people mean when they refer to brain fog? It really rattles me when it happens but I can deal with it. I think I just would feel better knowing I’m not crazy.

Hi all - my husband (32) was diagnosed with Meniere's in 2022. He was initially prescribed betahistine but didn't really take this very consistently at the time, and he wears a hearing aid.

Usually he has an episode every few months, but over the last 48 hours he's had 4 attacks which are much, much worse than usual - longer and more severe. He's been checked over by a paramedic twice and is now waiting to see a GP.

I was just wondering if anyone had any advice on what sorts of things we should be asking for. I'm guessing getting a new prescription and taking the betahistine more consistently might be a start, but should he ask for a diuretic too? Is there anything which might relieve an attack once it's come on? We're also looking into vestibular PT privately.

Thanks in advance for any advice.

I've had Meniere's for about 9 years now. It was pretty bad in the first few years, but slowly was much more manageable as I made more and more life changes. For roughly the last 2 years, I've had almost no symptoms, which has been incredible – until a couple weeks ago.

I posted on here in another thread about my sudden series of attacks. High stress, alcohol, and a particularly potent allergy season (I think) caused my worst flair-up yet.

I spent about 2.5 weeks with disabling tinnitus, ear pressure, fullness, and of course vertigo. I had attacks every other day, which turned into every day. Some lasted 4+ hours, some 3, most 1-2. By the end, I was so full of meclizine and diazepam that I could barely recognize reality anymore. I spent so much time just trying to calm myself down while lying as still as possible in bed. It was really weighing on me and I was starting to feel this was all there was going to be to life.

But in the midst of all that, you all were amazingly supportive as I shared pieces of this story and asked questions. It really helped to hear your stories and get your ideas on how I can better handle the symptoms.

I'm thrilled to say that finally about 4 days ago the vertigo relented, my ear little by little released, and the tinnitus faded away. There's still a super faint ringing in my ear, but most of the time I don't notice it. I'm also left with slight hearing loss on the low end of the sound spectrum. But otherwise, I feel normal. And that's a brilliant feeling.

I made multiple doctor visits, including a steroid ear injection and a full vestibular test. Here's what I learned from the doc (most of which will not be news to many of you):

Valium / Diazepam usage - I shouldn't fear taking this every day. No harm. No real risk of addiction. Long before that happens, it'll just make me too sleepy to even take more. 5mg daily is not a problem.

Ear - Even after all I went through, my ear drum looks intact and fully healed, with no sign of BPPV. Given that I have no physiological issues, he said my attacks will be worse than if I did have issues. He likened it to if I was sitting on a tall stool and he suddenly pulled it out from under me – the fall would really hurt. But if I was sitting on a short stool and he did that, the fall would hurt a lot less, if at all. Basically, if my ear was damaged, the Meniere's symptoms would not be as dramatic. But since my ear is healthy, it's a big difference causing major vertigo.

Allergies - Some docs yes it's related, others say no. I take Zyrtec daily and he said I could try Claritin or Allegra easily, but doesn't believe switching would do anything.

Cannabis gummies - He said these could take the edge off an attack, if diazepam doesn't feel like a good option. Since stress is a huge factor, this could help me chill out, taken responsibly.

Next flair up: Recommends at the first earliest sign I take steroid pills he prescribed, plus Meclizine, and diazepam all at once. He said that might stop it from evolving too far.

Maybe some of the above will help someone else here.

Regardless – Thank you all for helping me through this!

This all started for me 2021 my work had basically forced me into getting the shot. And now I have “ Ménière’s disease” my symptoms are crazy they are not normal they last months at a time when I have an episode. It will start with fullness and ringing that will progress for 3-4 weeks and then I get a 24 hr violent vertigo attack. And for the next month my hearing stays feeling full and ringing. Durning that pd I experience slight vertigo for a whole day once a week until it all goes away. But the vertigo I get after the big attack is tolerable. I don’t know what to do. I don’t think this is Ménière’s disease. Has anyone have any advise or have experience this same problems I am having? This is ruining my life. I am only 37 and have a family that relies on me.

I am going to a country concert this summer and now I am planning on making it to the Taylor swift eras tour (sitting outside or buying tickets day of) Trying my best to LIVE with this. Just here to vent because I’m 30 and should be able to do these things with ease 🥲. But I am trying my best to still do these things.

I’m new to this group but certainly not new to the symptoms. I have been dealing with persistent vertigo on and off for about the last 10 years, with major attacks coming about every 3-4 months. I recently had testing done and received a diagnosis of the early stages of Menieres. Today I experienced what I thought to be my first drop attack. I was standing at work when all of the sudden it felt like something had just taken over, my knees buckled and I was on the ground. My head felt like it was buzzy and of course my head rate shot up due to anxiety and I was shaken. Has anybody else delt with similar symptoms, does this sound like a drop attack?

Anyone try this? I just started today. Hoping it helps get my symptoms under control.

Is it your right ear affected or your left? And are you right handed or left handed? It means nothing but I'm just curious because I tend to run into more people who have it on one side over the other. Throwing in the dominant hand question just because!

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22 M, recently diagnosed about 4 months ago. Left ear. Thankfully I am having less and less vertigo episodes. Still dealing with daily headaches and nausea. Extremely unbalanced and unsteady. Have an appointment for my hearing aide in June. Is their a possibility that my balance will get better after getting the aide? Starting to get fullness now in my right ear which is worrying me as well. Feel free to share advice. Greatly appreciated thank you.

39 M from Canada, I have been having the symptoms for 5 months now. Minus the vomiting. How long did it take and what did you have to do finally get diagnosed? Family doctor's pretty convinced it's Meniere's. It has taken me 4 months just to get in to see a neurologist (end of the month) but are there more hurdle's to cross? Currently taking betahistine (32 mgs a day) and pregabalin( 50 Mg) to deal with the flare up's. My work has been pretty patient with me but without a official diagnosis I can tell they are getting upset with my random absences due to needing to go lay down but I don't have anything official to give them.

Well, weather changed and I have had about 4 attacks in the last month. Have had menieres for over 10 years and I have decided to take 1mg of valium a day so I can string together a full week of work. (I'm a carpenter so I need to be on jobsites all the time)

I hate that I have to and I'm sure many will say be careful not to get dependent on benzos and thank you for your concern but I haven't had an attack in over a week and if that's what I need to do right now I am going to. The sheer anxiety and stress that this disease causes me feels like enough to take small dosage meds daily. I used to fully ration the small rX I would get and only take it if absolutely necessary in fear that my doc would think I was abusing them which I never have.

Does anyone else here take benzos daily to help?

Does anyone else have this issue? When walking I feel like I am being pulled to the left or pulled to the right. Thanks

https://preview.redd.it/zi2pfmfsimzc1.png?width=856&format=png&auto=webp&s=38e86389a8c3fca4b9bf8674c2cb39abb90268c6

So I knew my hearing had suddenly become a lot worse over the last couple of months but I'd assumed it would be mostly in the low freqs like typical Meniere's. I'm now wondering whether this might be due to something else. Has anyone experienced similar hearing loss with Meniere's? Is it unusual for it to happen so suddenly in the high frequencies? To clarify: I've been diagnosed with MD since 2008, intermittent mild hearing loss in the low-freqs and intermittent one-off vertigo attacks about twice a year, followed by several years of no attacks, then suddenly in April horrific daily vertigo for about a week followed by this hearing loss and new weird pulsatile tinnitus in the 'good' right ear. I've been referred to an emergency ENT

I can’t even.

I’m new to this and everyday I am learning how bad stress is. It might be my only true trigger.

So I've looked through the FAQ and research online, and from what I can see it seems vertigo is the main/prominent symptom for Ménièré's, does anyone have a diagnosis without vertigo? Or did anyone else have issues with hearing before ever getting a vertigo attack?

Backstory: me and my brother have had issues with fluctuating hearing loss for about... 7 years now? Can be anything from sudden profound deafness or audible drop to just a mild drop in hearing, we've both (gradually) gone from above average hearing to moderate hearing loss over the last 7 years since it started, hearing was dropping randomly but then never quite recovering to the same level as before. Usually (but not always) preceded by really loud tinnitus. Occasional pain/pressure in the ears but not consistent.

Currently my doctor is suggesting Ménière's for the cause, and when I've looked online about fluctuating hearing loss it seems to be the only thing that comes up that sort of makes sense (no loud noise exposure/infections/autoimmune conditions etc.) only neither of us have ever had vertigo - we both get random episodes of dizziness/lightheadedness, but I'd describe it more as a somewhat mild "swaying" sensation? Unsteady on my feet but if I'm sat down I can still get on with things without it being too much of a hindrance, which doesn't seem to fit with vertigo at all.

on saturday i experienced a pretty rough episode, which after some research, i’m gathering was a drop attack. i was watching tv with a friend when all of a sudden the screen like shot at me and started spinning, thankfully i was on her couch and not standing up! about 5 minutes after i got pretty sick and was pretty shaky for the next 24 hours. i’ve been trying to rest up as much as i can since, and i’ve been more cautious of my sodium intake. the past couple days have been better and i’ve been able to work and stay on top of things, but today i just feel so off. i woke up with some slight head pressure and have been feeling pretty nauseous. is this normal? is my body just still recovering from the episode?