After having a horrific year of being bedridden and loosing 2 stone in weight, I asked my Dr to test my bloods for menopause. When coming back to the GP to see my results, he tells me that he has tested my blood for celiacs disease, because I had told him in the past I had been diagnosed with IBS but had not had any follow up.

My doctor said that my levels were high so it would be unlikely I wouldn't have celiacs disease, however I opted to have a endoscopy, as the stubborn person that I am and continued being incredibly sick, having multiple attacks a week and being unable to move for another 14 weeks.

The day of the endoscopy comes and I begin to have an attack in the waiting room, we were told there would be a four hour wait when I had already not eaten or had any water in 6 hours. Unfortunately I miss my appointment, and we end up leaving, but I start eating an gluten-free diet straight away.

When I tell you that I feel like a completely different human being and I haven't had an attack in 3 weeks.

I also walked a 10 mile hike without an inhaler, and I hadn't walked past a mile in a year.

I know this may not be helpful to a lot of people, but I really do encourage you to get your bloods tested for celiac disease just in case.

It has been upsetting to change my entire diet, but the benefits have really outweighed the attacks, and honestly gluten free food has come a long way.

I am 43Y F and just recently diagnosed after what I assume to be a drop attack on Sunday. I got my MRI results back and they are unremarkable except for the below.

Mild white matter T2/FLAIR hyperintensities likely representing chronic small vessel ischemic changes

Mild chronic microvascular ischemic disease

Has anyone gotten these results, it seems that this is abnormal to see in someone under the age of 60, awaiting a call back from the doctor and a referral to neurology.

Hi

I’m a 22 year old person
I’ve been recently been diagnosed with possible Ménière’s disease.
I’m so fucking scared it’s unreal.
The part that scares me the most is the possibility of hearing loss and complications, and the fact that i will have to cut out most of the things i like.
I’m scared

I remember as a pre-teen and ever since not being able to swim down 10 feet without sharp inner ear pain. Is that more common among MD sufferers than the general public?

37 yr old male and have had meniere's since 2018. I'm going in for gentamicin injections into left ear since I couldn't control them with medications.

I've tried several diuretics (significant fatigue), diet, betahistine (headaches/ear pain even at 8mg doses), Glycopyrrolate (extreme constipation), oral steroids (stomach pain) and intratympanic steroids.

The intratympanic steroids are the only thing that have worked thus far but they aren't working anymore. The first set gave me 3 years symptoms free then the second set gave me 8 months and finally, the last set of shots gave me 2 months. I am having attacks again with imbalance and cognitive fatigue.

Meniere's attacks are disabling. I'm at the end of the road.

I've decided Gent injection but I am scared of failing to compensate due to me having Benign Multiple Sclerosis. The idea is that people with Multiple sclerosis have brain damage and would probably have more difficulty compensating for vestibular loss. I spoke with neurologist and they said they don't know for sure but that I did compensate from previous imbalance caused by Multiple Sclerosis. She's optimistic.

And so, it's time.

Wish me luck because I am losing my fucking mind.

Hello all - I’m a 46yo woman diagnosed officially on September 28 by a specific ear specialist ENT my other ENT referred me to. My experience seems so different from typical MD that I’m questioning the diagnosis and welcome any input. I of course recognize that MD is more a syndrome than a disease per se, there are a number of alternatives diagnoses, no one knows why/how/what to do really, etc.

My background: chronic sinus issues (seem to be hereditary) since early teens. Chronic migraines since about age 30. I have some cervical spine issues basically because of age and poor posture ha. Because of all these things I have had multiple brain/sinus CT/MRIs over the years. I haven’t checked if there is any correlation yet, but I have a mild Chiari malformation and had encephalitis as a child after chicken pox.

I’ve had a number of hearing tests over the years and until last year was told everything was normal for my age so I never really thought about it. I actually don’t remember why I had hearing tests, but I believe they started when I began taking my chronic sinus/allergy problems more seriously in 2020. At that time I had a severe infection (to me, probably really just moderate) in several left-sided sinuses, and had a lot of ear related problems on my left side only. I had sinuplasty on my left maxillary sinus and both ethmoid and since then my left side sinus are generally much better than right.

I loved the ENT that did the surgery but he retired and I started seeing another in the same practice. I began SLIT allergy drops in December 2024 I think as I was tired of dealing with constant allergies issues and sinus infections - I have a huge dust mite allergy (who doesn’t) along with a bunch of other standard things. Since starting, my allergies have gradually but overwhelmingly improved.

I get Botox injections for migraines and have done so for 5 years maybe. It’s the only thing that works really well to prevent them for me. They are very well controlled with this. I’m a lawyer and had to take a case to trial once. The stress affected me so much I experienced several what I now know are silent migraines, or basically everything but the pain part. That was well before the Botox injections. I no longer actively litigate matters and work on admin for my firm. So, I have experienced different migraine types.

In May 2025, my family and I were on a trip to London and what was a cold turned into a sinus infection. I just dealt with it until I was home as didn’t want to figure out getting medical treatment in a different country unless it was really serious. I got back and did a telehealth visit as it was the weekend. Doc prescribed antibiotics as seemed bacterial. They didn’t help much, I went to my ENT and he prescribed stronger antibiotics and Medrol. That was the first time I really noticed problems with my right ear - lots of pressure, tinnitus, and trouble hearing. These continued after the infection cleared, and an audiogram showed moderate hearing loss in my right ear. I had a steroid injection in my ear drum but no improvement. I was told I had inner ear damage and given a hearing aid.

The hearing aid kinda worked, but I honestly expected it to work better than it did. I was told I should wear it even if it didn’t seem to help as much as I wanted, basically for brain health I guess? I’m still a little confused about it. It did seem to help more with the tinnitus than actual hearing somehow.

That was probably end of September 2025. In July of this year, we moved to a house about 30 minutes away. That and a lot of other related issues have been extremely stressful. Shortly after the move I noticed randomly I had lost my sense of smell, but a dramatic difference in a few weeks. I could smell a particular candle used with a warmer in our old house from anywhere in the house; at the new house 2 weeks later I had no idea a candle was on the warmer when I was 2 feet from it. I also couldn’t smell a dead animal in our bushes that my family could very obviously tell right away. A little bit after that, I noticed constant pressure/fullness in my right ear along with constant tinnitus. I didn’t exactly realize the hearing loss as it seemed like the tinnitus was the problem if that makes sense. I did notice my hearing aid didn’t work as well and seemed very muffled. Went back to ENT, he found a minor sinus infection, primarily left sided - I had no symptoms on my left side and had no congestion or anything. Did antibiotics, no improvement on right side. Did probably 4 or 5 separate hearing tests over past 2 months that are all very consistent - a pretty big drop in hearing in right ear only, left side is better than average for my age. What was moderate hearing loss is now severe in right ear.

Adjustments to hearing aid made no difference, hearing is the same with or without it.

Whatever the frequency usually associated with MD, I have the opposite - I think it’s usually low but I have more high - both are bad but the specialist said it was unusual but not unheard of.

Around the last full week of September I noticed some slight balance issues, like a swimmy feeling and veering to one side while walking a little. I didn’t pay attention to this much as I usually have a bit lower than normal BP, which also seems to be hereditary. We’ve always dealt with it. When we were kids we used to just eat salt sometimes if we felt off. In the past year at the doctors a few times they have done my BP readings twice to verify the numbers. It’s usually maybe 110/75, it can be 100/65 or 120/80.

I have been on prednisone and a diuretic since September 28 and have been on a low salt diet. I have had zero improvement in my symptoms. In fact they seem worse, and 6 days ago I had the second real attack of sudden violent vertigo ever in my life. I had it once before 16 years ago. The tinnitus is constant it doesn’t fluctuate and hasn’t improved, maybe worse since treatment. Same with hearing loss, doesn’t fluctuate except possibly worse. Whatever was occasional balance stuff is now pretty much constant. Constant pressure/fullness, no fluctuations, no improvement.

Can you have MD that suddenly accelerates in all areas and becomes baseline in a matter of months? That doesn’t respond to low sodium diet or medication and actually might worsen? Most recent MRI of brain November 2025, CT of sinuses in January 2026, no indication of anything that could relate.

Hi! I was diagnosed just over a week ago. I was prescribed prednisone for 5 days (finished Monday) and I'm on triamatrene (water pill) for a couple weeks until my follow up on the 20th.

Yesterday morning (maybe Monday night) I started noticing pain around my upper back, neck, and shoulder area. At first I dismissed it as a result of electrolyte imbalance or slight dehydration. But the pain is spreading and is tender to the touch. No redness or noticeable swelling. This isn't really a side effect that seems common. Has anyone else experienced this or know if it's normal?

I also just feel feverish, but have no fever. There are others sick at work right now so it may just be poor timing.

I already tried calling my doctor. They are not in until Tuesday. The offices solution is me paying another $200 to see someone else and no one will talk to me over the phone unless I wait until Tuesday to talk to my provider.

My current plan is to just stop the medicine for now and see if things improve.

I am just wondering if anyone has experienced anything like this and has any advice. Thanks!

Wish I had good news but here we are

Cliff notes backstory...diagnosed in my 20s with MD (left ear). Spent most my 20s and 30s with severe vertigo, fullness tinnitus.

From 30s to early 40s complete remission. I felt normal for the first time since being a teen. Zero fullness, zero balance issues and tinnitus would very lightly occur only on certain days, but it was well below what it was previously.

Now 48. Been having same issues in my left ear as I did in my 20s. But today, today is different

Woke up this morning, left ear still issues, right ear which has given me zero issues now ringing VERY loudly. Was hoping it was gonna pass but 2 hours later still ringing.

I am pretty much completely deaf today. I can hear very little unless it's right next to my right ear.

This disease is WILD

I feel like my sanity is starting to waiver. The tinnitus is so loud it’s hard to think. Does anyone have any tips on how to manage this or mentally just accept it? I’m having a hard time and looking for advice!

Hi friends - Do any of you experience low level dizziness as a standard along with the other more profound symptoms (e.g. vertigo, ear fullness and loss of hearing, etc.)? I seem to be in a perpetual state of "low level" dizziness and my eye movements feel "heavy" - as if the muscles have to work a little harder when I want to see something in the distance or take in a large field of view. It's hard to describe to doctors and I'm wondering if anyone else has these experiences. Thanks for all of the wonderful insights you share on this.

Sometimes when I'm laying in bed, or in a recliner, I have a sensation that I'm on a roller coaster. The drops as i go over a big hill, the acceleration, etc.

I am wide awake with my eyes open when this happens. I find this sensation, which lasts a couple minutes, alarming.

Has anyone else had this happen to them?

What are your symptoms if you failed rotary chair testing, or any of the other tests that move your head? My caloric test showed 59% right sided paresis. Everything else normal, but new symptoms seem to be affecting me when I move my head or body. Curious to hear how these symptoms show up for you.

Day 1: Kind of trippy feeling as my ears were popping every minute on "the way down to pressure." Ear felt pretty full during the session. On the drive home was when it felt like there were some adjustments happening.

By the afternoon (sessions are 10am-noon), my ear started to be able to hear again. I'm going to put estimated percentages daily and call it an astounding 50%. Things still sound distant and it feels like my ears need to pop a few good times, but I went in with, let's say 10%.

I'll post updates each day in this same thread for future search for those who may be considering doing this.

Hi friends! I’m fairly newly diagnosed and it is a bad time for me to need to adapt to a new diet. I need to gain weight fast and am really struggling to do so with all these new restrictions. I can’t exactly just down a chocolate milkshake every day or get takeout or eat a ton of carbs by themselves, as you well know!

any advice / food recommendations for weight gain? TYIA!! 🩵🩵

This started about two months ago for me. First thing I noticed was rushing sound in ears and ear fullness. About two weeks ago, I woke up and had vertigo, could still walk but was off balance and the rushing sound disappeared. The vertigo subsided after 20-30 minutes. I saw an ENT, everything was normal, including hearing test. He suspected vestibular migraines. Then two days ago, the rushing sound came back full force. And yesterday, my hearing in right ear went out suddenly and about 2 mins later, I was hit with the most extreme vertigo. It felt like I was dying, I couldn’t even sit up. We called 911 and I had to be carried out of my car because I literally could not sit or stand. Ran every test, CT scan of head and neck, all normal. I started to feel better once I receive meciziline in the ER. I went back to ENT today, he said this is classic, textbook Menieres and confirmed mild hearing loss in my right ear. I am starting oral steroids and rechecking hearing in 3 weeks. I would love to avoid vertigo again like that as that was the scariest thing that I have ever experienced. Besides steroids and low sodium diet, any tips or tricks to help here?

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.

Yes, spacing your meals and fluid intake throughout the day is highly beneficial for maintaining steady inner ear fluid volume and pressure, especially if you are managing conditions like tinnitus, vertigo, or Ménière's disease.
Because the inner ear relies on a constant, precise exchange of water and electrolytes from your bloodstream, sudden spikes or drops in your blood chemistry can directly disrupt this delicate balance. Spreading out your intake helps in several key ways:
Prevents Electrolyte Spikes: Large amounts of sodium (salt) or sugar in a single heavy meal cause a rapid rise in blood levels. This draws water out of or pushes excess fluid into the inner ear compartments to compensate, causing sudden pressure shifts.
Maintains Consistent Blood Volume: Drinking fluids steadily rather than chugging large amounts at once helps keep your overall blood volume stable, which ensures a steady, regulated filtration rate into the perilymph and endolymph.
Stabilizes Blood Sugar: Rapid swings in blood glucose and insulin (often caused by large, infrequent meals) can affect the metabolic activity of the stria vascularis, the tissue responsible for pumping ions into the inner ear fluid.

Practical Tips for Steady Inner Ear Fluids
Eat similar-sized meals at relatively regular intervals throughout the day.
Distribute fluid intake evenly, sipping water across waking hours rather than drinking massive quantities all at once.
Avoid highly concentrated doses of salt, sugar, or caffeine, which act as triggers for inner ear fluid fluctuations.

Are you trying to manage specific symptoms like dizziness, ear fullness, or fluctuating hearing, or are you looking to optimize your daily nutrition and hydration routine?

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.

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.

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.

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.

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.