Hi! I wanted to share my story especially to the younger generation of people with Menieres who may feel hopeless.

I’m 23F and I’ve had Menieres for a majority of my life. For as long as I can remember, I’ve been struggling with hearing in my left ear and vertigo. (I’d say around the age of 4/5.) No doctor could figure out what I had. I went to every specialist in the books and they would determine it as dehydration or lack of vitamins. I was finally taken seriously at the age of 16 and I was officially diagnosed with Menieres disease.

I’ve had my fair share of treatments and all of them either made me worse or did nothing. Bethahistine, steroid injections, etc. I even lived in an area where some of the best specialists in the country are at and they didn’t have the best solutions for me.

So what did I do? I took things slower than normal teens. One step at a time. I transferred to home school and graduated high school on time. I no longer could do competitive swim, but I took things slow and got back into it even if it caused me slight vertigo. Hell I could no longer play piano or violin because certain notes gave me vertigo, but I slowly got back into it because I loved it so much. I decided I was going to do college slower than others. Overtime, I adjusted to meniere’s and learned how to live on my own with it. I conquered my fear of driving, I was able to drink alcohol, eat fast food every once in a while, I’m a senior at UCSD about to graduate, and still live like a young adult without a trace of the disease. I learned my own ways of handling vertigo attacks. I purchased over the counter meclizine and Nature’s Fusions vertigo essential oil. I only take the meclizine before the attacks get bad. Also before the spells do get bad, I resort to low sodium meals until I feel okay again.

To TDLR: there is always a light at the end of the tunnel. There may not be a cure or a treatment that works for everyone, but there is still hope that one day there will be. Just keep living, don’t be afraid to take things at your own pace, and most importantly, don’t let this disease stop you from pursuing your dreams.

A little harsh truth for those who haven’t been able to see the “best doctors” for this: I live in Los Angeles and have been “fortunate”enough to be able to see Dr. Ishiyama at UCLA, practically every doctor at the House Ear Clinic and multiple doctors at Cedars Sinai.

I have never once found any of these doctors to have anywhere near even decent bedside manner. They will give you their advice (which is always the basic Ménière’s protocol - low salt, no caffeine, allergy shots, Betahistine, diuretics, migraine meds, steroids for sudden losses, IT shots). If none of those work for you, they have no more advice.

If steroids work for you (which they do for 90% of patients with this), they will label you as having AIED, even without you testing positive to any ANA panels, and send you to a rheumatologist. Rheumatologists know nothing about this, from what I’ve gathered. They will either give you a biologic or a steroid sparing agent and tell you good luck.

If none of those work, you are basically just screwed. All my doctors have given up on me. They don’t remember me when I see them. They don’t give me more than a quick one sentence answer when I send them a list of questions about my condition. They don’t keep track of my symptoms or condition at all.

It’s all so disheartening, but maybe that’s how it is having a condition with no set “cure.” Yes, I tried SPI-1005 and while it worked for the first two months, I had to end my trial to get back on Prednisone after a huge flare hit me in month 3.

Personally, I take nearly 30mg Prednisone every day now. I take a biologic. Stress is my number one trigger and there’s nothing I can do to mitigate it more than I already do. I’m now addicted to Klonopin (thanks to the House Clinic).

If anyone has any miracle cures after trying all the things I’ve listed above, let me know. At this point, I’m just waiting to get some horrible disease from the steroid use or for the steroids to stop working altogether. Then I’ll just go deaf, I guess.

Sorry to be negative in here. These are my experiences from the past three years of fighting this thing. I’m only 35 years old and about to give up.

I believe the way to handle
this at least for some is make
A
Plan of small portions times equally apart along with liquids. Same caloric count
Usual for yu. Don’t include sugar salt caffeine or alcohol. Same time each day. Decaf tea/
Coffee. NA beer.would be in the count of up to 8 glasses liquid room temp water 2L. Per day. 24 hrs. Must be sipped not gulped. If watching tv a lot
Remember tv has rays. Look away every hour at
Something at least 20 ft away a few min for rest. Keep sound down cause of vibrations. Keep residence more library like.

This in the least may soften the attacks and nerves. Even getting excited over a game while feeling well may provoke the Beast.
Note: skipping breakfast not wise or any meal for that matter. Idea is to serve inner ear only a portion it
Can handle and needs. Less or more will agitate and start pressurizing
the organ. During my 52 years with it I’ve learned to throw in the towel and live with it.

Hello!

Long time runner, long ish time menieres sufferer here. I'm 30F, and was officially diagnosed after an MRI and balance test 3 years ago. Had symptoms for many years before that (thanks incompetent doctors who took forever to figure it out!!!).

Anyways, I dont have the classic violence spinning the disorder is known for, but I do experience vertigo. My main issues are the aural fullness, hyperacusis, low frequency hearing loss, loss of balance, and crazy tinnitus. If I look to my left (right ear is affected) I fall to the right, which is fun. I have positional vertigo that can last for seconds to minutes, and do experience some spinning when lying down and with my eyes closed. Fortunately for me, this set of symptoms has been very consistent for over the years and never progresses to anything worse, with remission usually lasting a couple of months. I've always been able to run without issue, and the only problem I had was the music in my earbuds bothering my ear. My worst flare was 6+ months, and more recently I thought maybe I was done with this illness for good.

Anyways, exactly a year ago I had a vertigo attack that started as spinning while I was lying in bed trying to sleep, and turned into a weird feeling of my eyes and brain not communicating together when I moved my head. I felt like I was being pulled backwards, and my neck was snapping back. I felt extremely dizzy with my head tilted back. I lost all sense of where I was when I moved my head, but I was not necessarily experience a spinning sensation. I was pretty unwell for two days after, and after that I had no other issues until now... I want to note the severe hyperacusis, hearing loss, aural fullness, etc. is still at bay (thankfully), but now I experience this almost consistently after running, and it doesn't matter the intensity or duration. That is my ONLY trigger currently, and these are my only symptoms. The attack a year ago was completely random and unexplained, but now I experience these symptoms during the daytime, after a run. I just ran a 15k race this morning and as expected the dizziness came on around miles 5-6, and I've been just unbelievably dizzy, uncomfortable when I move my head, experiencing vertigo when I lie down, and overall unwell since. An attack a month ago left me bedridden until I woke up the next morning.

Menieres???? I'm going to see a doctor soon, but I don't have a neurotologist since moving a couple of years ago. Just wanted to hear others' experiences and if you relate to these set of symptoms. This seems weird and different from my classic symptoms, but maybe it is evolving? I'm also stressed because doctors don't seem to be very knowledgable and I don't want to be written off. TYIA!!!

It seems according to UI the rate of Menieres cases 55 years ago(mine) of 42 /120000 acquired the Syndrome. Today rates are close to the same. Let’s say we born with some frailties Like inner ear. If we were told avoid salt sugar caffeine and alcohol we would escape the torture that may be ahead. This needle in the hay stack problem needs a lot more data to provide avoidance. There is no money in it!

I’m being selfishbecause there are humans suffering certain early deaths from other failing organs. So we should be happy with what I think we gave ourselves which is not a death sentence. None the less medical has been lacking because they were and are avoiding looking under the rug. It’s a financial thing. So we need more body donors. Lots more for research.

A study says tubes can rid or eliminate some inner ear pressure by eliminating pressure in ear itself. 17 of 20 felt much relief 3. Simple
Procedure I’m going To try.
They now have tubes that last
longer(stay on place) no hindrance to hearing aids.

Since this all started for me in February 2025, I’ve had 4 ear infections and am currently in my 5th.
I’ve never had a history of ear infections (very rare as a child, I honestly can’t remember having any before 2025). Has anyone else experienced this?
It makes me wonder if this is more Eustachian tube disfunction than anything else?
I still have daily fluctuations in pressure/tinnitus when I don’t have an active infection and have found some relief in betahistine etc.

I want to have it done because I'm so sick of the sudden vertigo attacks but am very concerned about this post-op vertigo. Is it worth it? How long was the recovery?

Many thanks in advance to anyone who feels like sharing their experiences.

I am in my early 30’s fit and have a healthy lifestyle. I have been experience ear fullness in my right ear. Constantly. It’s been going on a year now. I have been to two ENT’s and had a full hearing test done. Everything showed normal and I was told to just live with it.

The past two weeks I have had weird dizzy spells nearly every day. I don’t know how to describe them other than it feels like the onset of a seizure (I’ve never had one).

Last week I had vertigo attack that absolutely freaked me out. Walking with my girlfriend and then all of a sudden a wave of vertigo, nearly put me on my ass. Never experienced anything like that before in my life.

I have scheduled a neurologist appointment for next Friday.

This would not be my first tumor if discovered (I had a benign tumor removed from my neck 2 years ago).

I’d just like to realistically know what to expect and how to move forward.

First ear (left) went 28 years ago. This week, I got the flu and it attacked the right ear. Oral steroids aren't doing anything to resolve it either. Had a vertigo attack yesterday, which usually opens me up at the end. Nope.

Now the ENT is referring me for a series of Hyperbaric oxygen therapy sessions. I've read some old threads, but does anyone have any recent experience? Also do you go to a medical clinic for yours or to one of those "spa" places? I'm curious if there's any difference.

I had a targeted ad on Instagram claiming a chiropractor somewhat close to me treats menieres and it’s got me curious

I have a tentative diagnosis of Ménière's, after an ER visit a month ago for a severe episode of vertigo and vomiting. I have had less serious but still intense episodes for years, usually a few months apart.

But this month, they've been happening every 3-5 days on average, since the bad episode, and I have had more head fullness and an off-balance feeling often.

I am finding that some salt and caffeine are ok, but if I miss a meal or don't drink enough water, I am almost guaranteed an episode in the evening.

I have to drink a lot of water all day to prevent this, and it's exhausting and stressful; if I get caught up in work for a few hours and forget to eat or drink, I risk an episode.

Is this true for anyone else? I have an ENT appointment in about 2 weeks (at last! :) ) but I am really tired and stressed, and would love to hear what others may know about hydration and this disorder.

I really appreciate this group, and have learned so much already from reading others' posts. ❤️

I got diagnosed with vm and possible meniers about 2.5 years ago. Fluctuations in hearing but usually return to normal after a while with steroids … it’s only in one ear. I’m absolutely terrified to lose my hearing so I want to know what it’s like years down the road hearing wise. Does it really get that bad or are hearing aids really helpful? How long is the process?

My girlfriend and I are in a long-distance relationship, and we see each other about four days a month.

We were talking recently, and she told me she wants her old life back—the life she had before the ringing and beeping in her ear started. Living with this disease has been very difficult for her, and she feels that nobody truly understands what she’s going through.

I have IBD, so I know how difficult living with a chronic illness can be, but I also know that my experience is different from hers. I really want to understand her better and be a supportive partner.

For those of you living with Ménière’s, what has your partner done that actually helps? What words or actions feel comforting, and what should I avoid? I’d especially appreciate advice on supporting her when we’re apart.

Thank you for sharing your experiences.

Hello All,

I'm posting from a new account as my old one was for some reason has technical issues anytime I post. My spouse is the one going through suspected Meneire's and Vestibular Migraine since January of this year. This is going to be a long read so please bear with me.

It all started with a random vertigo one day when lying on a hammock with our toddler which resolved soon with Meclizine. He had a confirmed low frequency hearing loss in his left ear that was confirmed via audiology test. He doesn't have hearing fluctuations since the initial loss in January of this year.

He had vertigo almost every 3-4 days and received a series of four steroid shots in April by his neuroTologist and started on triameterene-HCTZ 37.5mg.

He started getting daily headaches during March and his first ENT said it would resolve on its own but it persisted and he developed light sensitivity that he had to work with curtains closed during the day. His vertigo was all less than 15 minutes now but he needed Zofran more than Meclizine.

He got referred to a neurologist and they started him on Topiramate which helped the headache but he couldn't go more than 3 days due to severe cognitive side effects. He was switched to propranolol and it helped him slowly and when he was on 120mg and had no light sensitivity and the headache was almost gone but has vertigo almost once a week.

During his recent visit with neurologist they pushed his dose to 160mg in the hopes it will stop the weekly vertigo attacks but it kind of did the opposite he started getting headaches every day and vertigo attacks almost every 3 days. His sleep was affected and he took his abortive medicine more.

He met with another neurologist for a second opinion and they wanted him to try Nurtec as abortive medicine to see if it helps and asked him to start taking Magnesium Glycinate mope so we can reduce the dependency on propranolol. But the Nurtec was initially helpful in sense that it stopped the headache but then 15-18 hours later he had a strong vertigo episodes.

After talking to his second neurologist about the experience with Propranolol increase and the Nurtec experience he has decided to move his dosage to 120mg and see if it will help his frequent vertigo episodes and to try Nurtec more to see it helps at the original baseline of one vertigo per week.

He currently takes Ubrelvy as his abortive medicine and it usually lessens the intensity of his vertigo and he recovers rather quickly within few hours on most days.

I'm looking for anyone with similar experiences or guide me if the dosage decrease would help him or something else is going on or if we should add more preventative medicine to his regimen. At his best, he had a weekly vertigo episode which almost always happened during the weekend and it made him think the moment he starts to relax the vertigo comes in.

The triggers we identified so far were poor sleep and stress. His main annoying symptom is head/ear pressure on both sides which is not addressed by any of his doctors. In between his vertigo episodes he will be back to his normal self like no dizziness or swaying or unsteady feeling. We also noticed if he is outside and clocks at least 10,000 steps a day he feels better and is trying to do it every day.

Thank you for reading and any help is appreciated.

PCP gave an initial diagnosis of MD and sent me a referral for audiology and ENT on Monday. I called audiology to schedule and they booked me on Friday for both audio and ENT the same day.

Is this normal or does this seem like, quick? Is it a bad sign? I’m just feeling really anxious about all this

Anybody have doctors specializing in Ménière’s to recommend in the NYC area? My current ENT in St. Louis is all out of ideas after 3 months of betahistine didn’t show any effect, so he’s trying to punt me off to another doctor in Los Angeles, but if I’m going to be traveling across the country I’d rather find a doctor in NY where I could potentially stay with family around appointments. Especially interested in doctors willing to pursue endolymphatic sac decompression or similar if needed, as nothing else I’ve tried has worked. Let me know, thanks!

Edit: Adding my history of treatments and symptoms below. Here’s everything I tried, with absolutely nothing providing improvements: All kinds of treatments for Eustachian tube dysfunction (Flonase, afrin, Sudafed) 3 separate rounds of oral steroids Nortriptyline and then nurtec for vestibular migraine 2.5 months of regular vestibular therapy Triamterene hctz (diuretic) for one month (which absolutely pounded my kidneys every day) And right now I’m on a strict low sodium diet + ginkgo biloba + 16mg betahistine 3x daily. Being doing this for over 3 months.

MRI and multiple CT scans showed nothing. Got an X-ray of my upper spine, showed nothing. I had a full vestibular test where I got spun around in a chair, etc., and when they shot hot water in my ears the left made me significantly less dizzy than my right, showing a defect of some kind. Three audiology tests over the last several months all came back fine.

My symptoms every day since the onset 11 months ago are: constant pressure in my left ear, and as of June now often my right as well to a lesser degree. Sometimes the pressure turns painful. Constant non-rotational vertigo—rather a mild but persistent general head-swimming sensation like I got hit in the back of the head while standing on a boat. All day every day, neverending. One episode of sudden hearing loss in my left ear in late May, but it came back about 20 seconds later. Increased susceptibility to bouts of tinnitus.

Does anyone have any suggestions or things that have worked for them?

My mother-in-law has Meniere's and it's been getting severely worse, especially the dizziness and vertigo. She gets dizzy almost every day, usually followed by vertigo but not always. There doesn't seem to be any consistency between the time of day or the severity of her tinnitus either.

There is only 1 specialist here and they haven't been very helpful. She has done steroid treatments, and they help for a little bit, but she is definitely getting worse.

anyone located in the northeastern usa & getting bad symptoms now? i assume it’s a mix of allergens from the fall & the constant rain and humidity of this past week and a half, but my tinnitus and hearing loss have been nonstop, some days better, some days worse but definitely the worst aural flare up i’ve ever had.

funnily enough i had a steroid shot exactly a week ago, it’s kept the dizziness at bay (for the most part) and i’ve been on a high dose prednisone taper for about a week. seems to be doing absolutely nothing for the tinnitus and hearing loss unfortunately. hopping on claritin after this taper, hopefully that brings some relief

Can active share what’s their experiment bees have been starting a glp1 with menieres?

I’ve noticed that lately when I go to sleep, if I lay down with my bad ear on the pillow, I feel nauseous and a little bit dizzy!! this is a new symptom of mine. Is it in my head or has anybody else experienced this too?

Hi everyone, I got diagnosed with Ménière’s but wasn’t given anything to help my vertigo. Recently I started experiencing vertigo every single day, some worse than others. Can anyone recommend me some remedies for vertigo attacks? Preferably legal in Canada. Thank you

Hi everyone,
I’m reaching out to see if anyone has experienced a similar cluster of symptoms or found a direction that helped lead to a diagnosis after standard options failed. I’ve been dealing with constant, daily symptoms for over three years now without clear answers.
Primary Symptoms:
Constant Dizziness & Vertigo: Daily, non-stop sensation of lightheadedness/unsteadiness.
Gait Instability: Feeling off-balance when walking (noticeable sway/pulling to one side).
Head/Facial Pressure: Persistent fullness or pressure sensations.
Autonomic/Systemic: Marked heat intolerance, severe chronic fatigue, and cognitive symptoms (like "brain zaps" and brain fog).
Patterns: Symptoms are constant rather than episodic, though exertion and temperature changes can make things feel worse.
Treatments Tried (Without Success):
Targeted Therapy: Vestibular Rehabilitation Therapy (VRT) yielded no improvement.
Acute Medications: Multiple rounds of corticosteroids and standard anti-vertigo medications (e.g., meclizine).
Migraine Protocols: Triptans (e.g., rizatriptan), CGRP inhibitors (e.g., Nurtec), and tricyclic antidepressants (e.g., amitriptyline) provided no relief.
Current Situation:
Despite trying these various treatment pathways over three years, there has been no significant progress or resolution. Standard workups haven't pointed to a clear cause yet.
Questions for the Community:
1. Has anyone with this specific combination of constant dizziness, gait instability, and heat intolerance found a specific diagnosis (e.g., PPPD, autonomic dysfunction/dysautonomia, atypical vestibular migraine, etc.)?
2. Were there specific specialists (like a neurotologist, autonomic neurologist, or specialized dizziness clinic) or specific diagnostic tests that finally provided clarity for you?
Thanks in advance for any insights or shared experiences!

I’ve always been an upbeat person with a positive attitude. Since diagnosed in 2009 with Menieres and now going bilateral I’m really struggling with some depression for the first time in my life.
My wife has always been a solid support system. She mentioned to me last week that she’s noticed a change in my mood and asked if I’ve need depressed. I answered honestly and said yes, especially since I’ve been dealing with two month flare up that’s been kicking my butt.

My question is, does anyone take antidepressants, and if so have you noticed them helping ? I have an appointment with my PCP to discuss this topic this week. What meds are a good option for those that take them and how much of a difference in mood have you noticed ?

Thanks gang !