r/Menieres

I was diagnosed about 18 months ago with menier’s and was in the process of getting tested for Vestibular Migraines but the MRI showed another issue that took me down a rabbit hole to get that checked out. Turned out to be nothing. But I have not finished the testing for V/M. For those that have been diagnosed with both did you find it helpful to have the official diagnosis? It is expensive to begin the testing again so if it won’t benefit I will skip it. The second question is do you get dizziness and vertigo when looking up and doing work over your head? Is that a Menier’s thing? And then I am having an episode about every 6 weeks now. During and immediately afterwards I am exhausted and fatigued to the point I will fall asleep several times a day with overwhelming tiredness. Is this another Menier’s thing? I have been dealing with other medical issues but now want to address some of these things without sounding like a crazy person when I go to the doctor. TIA!

I recently got COVID, no fever only stomach issues. I’ve been throwing up a lot but nausea medication has been helping. One big problem is I haven’t eaten.

All this to say, I feel like I constantly have vertigo rn and it’s a little scary. Both of my ears are ringing like crazy. How do you handle this while sick? Luckily all of the nausea medication is helping with the spins, but i still can’t walk around.

Is this bc i haven’t eaten in a day or two or do i need to drink more water? Please give advice 😣

I’ve seen lots of info on treatments for vertigo. I’m wondering if anyone has found anything that helps the fullness and pressure. It’s driving me crazy. My hearing issues started last August following a head cold. With the exception of maybe two-three weeks at the end of December, the fullness and pressure have been constant. Sometimes the pressure gets a little worse but it never goes away. My hearing loss is low frequency only and it has apparently fluctuated (45db loss to 30 to 25, then back to 45) but I don’t really notice the hearing changes since my good ear does a good job compensating. The ear stuff would be more tolerable if the pressure and fullness were gone. I’ve learned to adapt to the tinnitus and hyperacusis.

Hi all-

I was diagnosed 1/25 after months of vertigo attacks and all the ear/hearing symptoms that accompany menieres. However between then and Feb of this year (so over a year) I had no episodes. Still hearing issues but that’s manageable.

In this second round of episodes, I’ve had three severe attacks but now am experience waves of dizziness on a daily basis. They’re not nearly as bad as the attacks, but still make daily life very difficult. I don’t recall having these during my first set of attacks.

I’ve heard this is common, but wondering if anyone else experiences this and anything that helps with it? I have another appt with a new specialist in a couple weeks, but really struggling here. Thanks!

As the title suggests, do you ever feel like there's a faucet in their menieres ear dripping at times?

I honestly think the cognitive fog is going to kill me. I can't think worth shit and I am dreading the gentamicin shots and that they won't help my cognitive fog. Any one have any input on the cog fog? How to deal with it?

I did a 5 shot round of intratympanic steroids which stopped working after 3 months. Betahistine gave me unbearable headaches. Only thing that worked was diuretics and that has helped with the cog fog some but I can't keep raising the dose or else I'll pass out.

I am wondering if what is truly need to kill this cog fog is labyrinthectomy.

I (19F) have been having increasingly intense ear issues since a severe acoustic trauma back on January, though I'd had tinnitus and frequent sbutt episodes before that. Over the past months I've acquired MEM, worse constant tinnitus alongside tinnitus that fluctuates so much in sound and volume that it wakes me up, fatigue, more sbutts, ear pressure, fullness, fluctuating hearing loss...

I've started having real episodes too: where my affected ear rings for hours accompanied by aural fullness, and/or low frequency hearing loss for the same span of time. No vertigo yet, but my ENT has stated that's likely because I'm in the early stages.

All I can do is wait and see if I get worse, and while I know my diagnoses is not definitive yet, but I can't stop sobbing every day. I've fought so hard to be able to function with my pre-existing tinnitus. I'm so young, I can't stand the idea of worse tinnitus and hearing loss.

Any advice appreciated.

I've got a sore spot inside my affected ear where if I put some finger pressure on it (lower part of ear) it hurts a bit. I thought it might be a pimple but it does not seem to be the case. This happened once before a while back

My husband has Meniere's, vestibular migraines, drop attacks, and regular migraines. I won't go into too much detail, but the last year has been hell for him. His regular migraines were being controlled with Nurtec, but he was having vestibular migraines multiple times a week, sometimes lasting a few days. We tried the low-salt diet, but that didn't help.

I got him in to see a doctor at Hopkins, and while he was talking about the migraine diet, I noticed it's very similar to the low-histamine diet for MCAS. After hours of research, I found an MRT blood test through Oxford that tests for sensitivities. I'll say this up front: I know there is limited data on sensitivity testing, but this one is different from most you buy online.

His test results came back after only 4 days of the blood draw, along with a diet to follow to avoid his trigger foods. He's been following a low-histamine diet for 3 months now, has been taking H1 and H2 blockers, and Quecertin, and has had no vestibular migraines. One of the foods on his "no" list was rice (which I found odd). However, he tested this by having 2 tablespoons of rice, and within 10 minutes, he had a vertigo attack after not having one for 3 months. There are H1, H2, H3, and H4 receptors in the inner ear.

He said he feels the best and most stable he has in years. I also have an appointment scheduled with an MCAS-trained allergist/immunologist to discuss possible MCAS.

I'm writing this to let other people know about a potential diet that could help. The MRT test is expensive, but in my opinion, absolutely worth it. At the very least, a low-histamine diet, Zyrtec, and Pepcid could help.

I had a follow up routine appointment with my ent who wanted to do an audiogram. Based on the results, compared to my audiogram last year, he thinks it might show some conductive hearing loss. I haven’t had an episode in the time from my last audiogram to today and have in fact been very diligent in protecting my hearing and wear earplugs a lot these days (at the movies, in a crowd, on an airplane, etc.).
Is it possible to have hearing loss progression in my bad ear despite not having had an episode?
My ENT seems more concerned about progression now and wants me to add a diuretic. He also ordered a VNG, ECOG, and VEMP. Does anyone have any insight on this situation?

Hi everyone. I haven't been diagnosed but seeing my doctor asap. I have been getting these spells of ear fullness/loudness/airplane/roaring sound with dizziness. Last night I felt loud vibrations in my ear too like noises. I've had plenty of vertigo spells before too. However today, I woke up with the worst ear fullness ever. I can barely hear anything. I'm seeing my doctor next week and booked in to see an audiologist next week also, but right now I'm freaked out!

Everything is really muffled and my ears are full and like a monotone sound through them. Has anyone dealt with this? I thought I'd be able to sleep off this attack but I've woken up worse :( I'm so scared it's sudden hearing loss

Edit: adding that certain angles can alleviate the full feeling a little bit like putting my head down while sitting down but not sure why

Update: saw an audiologist, my hearing is perfect and so is my eardrums but being referred to an ENT over the next few weeks in case its inner ear issues such as eustachian tube dysfunction

Hi I would like to know how people remain positive, with this horrible condition.

I've been diagnoised for over 4.5 years and find it so debilitating, it's difficult to function.These past 10 days have made me feel so down.

I am OK sort of pottering around my home,but if I have to go anywhere it's no. My Body literally won't let me.In the past 10 days I've managed to get in a taxi and go for a food shop.That's it

I have a fullness in my ear which is uncomfortable,mild headache and feel like I've just got off the waltzers after been on them for a few hours.

How do you cope with this feeling and how long before your able to do stuff.Or am I expecting to much of myself and pushing myself to try to do stuff that I shouldn't be.

Today I've managed to take a shower,do the washing plus hang it on the line. Should I be happy about these little things that before were do able and more.Also got tinnitus feel like I'm on a plane taking off with my ear is so pressured.

I think I just need reassurance, as only you guys know what it's like help me feel better.I miss my old life !

Yall my pharmacy called and informed me they won’t have any until LATE JULY. It’s what keeps me from having drop attacks! I’m calling all the little pharmacies and so scared. But I HATE having to rely on medicines to live my life. This is just stupid. This whole thing is just stupid. What happens if they still don’t have enough? Do I just not take my medicine?!

Hi Everyone, a beta version of Balance: Vestibular Diary is now available for Android users to test. You can download it at https://play.google.com/apps/test/com.alchemyg.balanceapp/3. 

The full version for iOS is already available on the Apple App Store: https://apps.apple.com/us/app/balance-vestibular-diary/id6761732163

About Balance Vestibular Diary: 

If you struggle with inner ear conditions like Vestibular Migraines or Ménière's Disease, Balance: Vestibular Diary was designed for you — by someone who lives with it too.

Track episodes, symptoms, and triggers with just a few taps. As you log an episode, Balance automatically looks up the barometric pressure at your location — before, during, and after — so you never have to do it manually.

Choose from a list of common symptoms and triggers, or add your own. Over time, charts show you how your episodes relate to pressure changes and which triggers appear most often.

When it's time to see your doctor, export your data as a CSV or a one-page PDF summary — formatted for easy reading, not a spreadsheet dump.

Knowledge is the key to managing difficult vestibular conditions. Balance helps you get there.

To learn more and join the public beta, visit https://alchemyg.com/balance-app/

Does anyone have a good list of symptoms for each condition, that includes where the conditions overlap and where they don't?

I was diagnosed with MD when I was *14*, but because I don't remember the doctor or practice I was with for them to recover my records, no one locally will take me seriously. They say I CAN'T have MD, because on the days they do the hearing tests I don't have significant hearing loss--even tho it's *fluctuating* and not permanent, they don't care because it's not there that day. ENTs all send me to neurology, and neurology says "yeah we know you have migraines, that's why you're already a patient here, but you really should go back to ENT." I just don't really know what to do, because the last ENT I saw didn't even refer me for VM, they just set me up with vestibular rehab as if it was just BPPV. At best, the ENT will give me water pills that mess with my blood pressure but not really my ears.

I'm trying to get in with my GP now, hoping she'll refer me to a different ENT. But otherwise, idk what to do. I'm not missing work yet, but I'm not able to drive at all. I'm taking an OLD prescription of Valium I found, because that at least gets rid of the vertigo, but even then I still can't drive because of being all medicine-head. I won't be able to get an up to date prescription of Valium from any doctor tho, because I'm already on Ativan for anxiety and my psych PA doesn't like giving valium (or Xanax). She says the Ativan is safer. (It doesn't matter that I KNOW not to take them together, they still won't give me scripts of both.)

Any advice, or a list of overlapping symptoms? (The best list I've found was a NIH paper that's peer reviewed, yes, but not formatted for printing out a list of symptoms.)

My MD started off bilateral in early 2023. I was 27 years old. They think it's autoimmune Meniere's as I have an autoimmune disease too.

My dad's started off bilateral when he was early 30s. He is now nearly completely deaf and has been for awhile.

My Ear doctor told me today that bilateral involvement with eventual profound hearing loss is usually the case for autoimmune Meniere's. I currently do not have hearing loss, though it sometimes fluctuates.

I know no one can predict the future and everyone is different. But im scared I could follow the same path as my father.

So. Did it start bilateral for anyone when they were young & it not turn into severe hearing loss?

Ever since my (partial) diagnosis (waiting to be referred to specialists) my anxiety about it has been almost unmanageable. I’m always waiting for the next episode and if I feel even the slightest bit off I spiral and make it worse. I feel OKAY but I’m so so anxious to do anything or even leave the house. I want to go to work but my mind is holding me back. Anyone else struggle with the anxiety of MAYBE having an episode?

I’ve now been on Qulipta for over 12 weeks. 8-12 weeks is supposed to be when it reaches maximum benefit. It’s helping my migraines, but I’ve seen no change in my Meniere’s episode frequency or severity.

At this point, it seems doubtful that my Meniere’s is caused by the same mechanism as my migraines, since I’ve tried nearly every migraine preventative on the market with absolutely no effect on my Meniere’s symptoms. I’m not really sure where to go from here other than continuing lifestyle management, since the Qulipta was a Hail Mary after having tried and failed everything else in the Meniere’s and migraine spectrums.

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Hi there!
I’m trying to understand what is happening with me.

I have developed this humming sound in my head but with oarticular characteristics. The humming stops completely if I humm, move head side to side, walk or if there is enough external sounds. I know it is not masking because sometimes during the day I barely hear it if I’m outside and when I come back it is not there and it slowly come back increasing the volume until I go to bed when it becomes unbearable. Seems that if I am static (sitting or lying down) it becomes more and more noticeable.

Everything I searched for points to somatosensory BUT I do have other symptoms that could point to meniers.

In 2024 was the first time I had this “stuff ear” follow by some dizziness which looked like to have been ear infection post loud noise exposure. I also have some degree of Eustacian tube disfunction / blocked nose.

But when I go to long trips in the car, if I fly, or go in a boat I get this rocking boat feeling that can last for a week or so (or in high stress situations)

I just wanted to check with those diagnosed with Meniers is this sounds familiar. Been to 3 ENT 5 audiologists and all saying the same thing … this is Tinnitus learn to leave with it. My gut feeling tells me something is off because I have pain, facial pressure, headache…. 🙏