I had an MRI last Tuesday and was just able to access the results today through My Chart. The problem is that I do not have an appointment with the otologist to discuss the results until February 10. The key sentence seems to be this one:

1. On the right, vestibular hydrops Bernaerts grade 2 and cochlear hydrops Bernaerts grade 1. Retrolabyrinthine bone thickness is greater than 1.2 mm, indicating very low likelihood of the hypoplastic endolymphatic sac Meniere endotype if this patient does have Meniere disease.

Does anyone have experience with having had a hydrops protocol MRI and therefore have some sense of what the significance of this is?

Does anyone have all day flare ups .

So, I'm not diagnosed with menieres. But wonder if I have a "mild" form.

(And should anyone have any different ideas I could look into, then please share. I'm well aware no one can diagnose me here).

In short.

24/7 tinnitus Almost constant feeling of fullness in my ears (sometimes they feel damp/wet). And I often try to pop them. Periods with random vertigo "attacks" that usually lasts seconds (which I think is abnormal for meniers). I don't feel like I'm gonna pass out, but more like I'm about to fall. But happens in whatever given situation. Standing, sitting, walking, gym and so on. A few times I've lost hearing, feeling like my ear is suddenly clogged. And then sound slowly comes back gradually over a few minutes. And if I'm in a noisy place, it's pretty much impossible for me to understand people. (Like I just filter out speech). Resulting in a lot of "whats" and people just giving up and me nodding 😄

But ever since my late teens I've had bad tinnitus. Factors that could play into that, is getting run over and hitting my head, and that I'm a guitar player who played with various local metal bands and never bothered to use earplugs.

I've had hearing tests done a couple of times because I can't understand why it's so difficult for me to hear in crowds, but my tests are always fine.

No visual structural damage, though a few times I've been told I have some build up of earwax.

I completely stopped using q-tips because it usually results in me getting an ear infection. So now and then I use earwax removal fluids approved by doctors.

Lastly. I've suffered from anxiety since I was a teen. And can't tell you "it's not" anxiety, because anxiety is just overall weird. But these just aren't common anxiety issues on average.

Thanks and Good day all.

Been dealing with vertigo, extreme light sensitivity, slight hearing loss & constant tinnitus for two years. Clear MRI 2 years ago when my first attack happened. It was dropped, nothing diagnosed, no referral. I know, I know, life was hectic, and I never really put all the symptoms in one bucket.

After moving I recently started a new GP & she mentioned Ménières or potentially migraines, even though I have no pain. Is this possible?

My episodes happen suddenly, and come in waves, and I can’t pinpoint a trigger. Reading posts on here has me partially worried. What questions should I have for my upcoming ENT referral?

ENT. He's very good. Wanted to know why I was there and honestly I couldn't remember why I booked the appt so I felt a bit sheepish. I told him my symptoms he said he can't confirm Menieres without an ultrasound (OOPS I MEANT MRI), which I'm finally happy to hear. 15+ years I've just been "told" I have Menieres but no one did anything but ask me questions and look in my ears. What I'm mostly happy about is he referred me to a specialist to help with my tinnitus. I'm so used to being told there is nothing to be done about that that I almost cried when he said someone can help. He said his wife Gail is the Meniere's expert and I will be in good hands when I see her in May.

Hey guys, For the past few days I’ve been getting randomly lightheaded and it comes at random times, I can just be sitting down doing work and I get lightheaded and feels like an attack is coming but it never happens. Was just wondering if any of you guys have experienced this before.

I never had a warm headache before ( warm forehead while having a headache ) im having it now combined with ringing ears and nausea. iam always afraid that i have something serious like a tumor or a stroke or something

Hi all, I was wondering if there are any of you in the area within/near Madison, Wisconsin, USA who could recommend doctors and/or acupuncturists in the area? Looking for new options for care, and would appreciate any solidarity and community advice too!

Has anyone had any success with cognitive behaviour therapy and dealing with menieres and the resulting depression . I’m finding it difficult… I understand that your thoughts , feelings and behaviour are all connected and that could be very helpful for depression on its own but I am having trouble understanding how it can be helpful with a chronic medical condition like menieres . If anyone has any experience/ feedback it would be much appreciated . Thanks

How does your vertigo start ?

Does its start with lite dizziness at first and then full blown attack or from the start it was like full blown attack

I'm 20F and in college for Biology. My freshman year was normal. I went to class, I joined a club rowing team, and I hung out with my friends. I am so in love with rowing. One day at practice, I noticed I couldn't hear my coaches as well as I remembered. The next year, I had my very first drop event during a practice. I was diagnosed with Meneire's disease October of 2023. I had another drop event during a race a month later. I always struggled with morning practice but now, I can't even get out of bed in the morning without wobbling like a toddler. I can't drive myself to practice. I can't go to my AM classes. I have to wear hearing aids and I get spells of brain shattering tinnitus. I miss my friends. I miss feeling normal. I'm constantly stuck in bed because the only thing that helps me not feel dizzy is to sleep it off. I'm going to have to drop out of school and move back home if I can't get my grades up. I want to row and pursue a Biology degree, but I feel so limited by this disease. I don't know what to do with myself anymore. Any advice? Any young people? Am I alone in this experience?

So i have been diagnosed with meniere disease since 2019 and living worst life possible insane vertigo attack depression anxiety and hating each day i live and now iam going to forced military service 1year and have no proof i have it and where i live they won’t even understand my problems and iam really scared the doctor wiil say that i can do the military service i stay at traning camp for 3 months no phone or any connection with family i will probably have the worst 3 months of my life any ideas what should i do

The doctor thinks I have Meniere's. I've had about 5-6 episodes of sudden hearing loss, only one ear at a time, over the past 18 months or so. My hearing returns in 1-2 days. During the last couple of dropouts, the tinnitus during the episode would be LOUD. Two dropouts happened the day after visiting rooms with really cold air conditioning. One was a casino where I played cards for a couple hours, seemingly right under an A/C vent. Everybody at the table was freezing. The other was a library room where I remember being really cold the whole time, about two hours too. I'm wondering if there's a connection.

My husband is 6 months in to having menieres and the past 6 weeks have been absolutely horrific. He has been in bed about 60% of his "awake" time. He has very long 6-8hr attacks and they cluster for days. He’s had a few “good” days in the last 6 weeks but they are far and few between. He is doing low sodium, like zero added salt and cooking all our own food, never exceeding 350-400mg at a time and more times than not closer to 300. He's also taking a diuretic. He is at the bottom of the well and can't see any hope. The longest he has experienced is 6weeks without a major vertigo attack and that was over 6 weeks ago. Is there hope that he will find something or get to a more remissive state? His anxiety is out of control and has a super stressful job and we have 3 small children so our lives are just stressful. Or do I just need to accept and prepare for this life?

Does anyone here use pre workout and have you noticed a difference in your Ménière’s? I know there is no caffeine in most of them, but I’m too afraid to try it! Caffeine and salt are a huge trigger for me. I used to use it before my workouts but since being diagnosed and having been in a car accident I haven’t been working out as much as I used to, but I’ve been starting to go back recently. I’m just curious what other’s experience has been. Tia!

Hi. I wanna clarify big time that i don’t plan to stop fully with medication and i don’t wanna suggest anyone should either with treatment. I just wanna ask if someone has explored the natural alternatives for vertigo and/or tinnitus. Mostly tea recommendations if any, or any other thing you may have stumbled upon.

I drink Gingko tea as a measure but i cannot speak on results since i haven’t done it for a prolonged time.

Just got back from 1 of 4 steroid injections into my ear. Went well, slight pain and discomfort during it but nothing too bad. Very slight pain in the ear right now but I got it about an hour ago. If anybody has any questions about it feel free to ask, I will update how the remaining injections go and if symptoms persist or not.

I am on a diuretic though so maybe that would take the heavy lifting?

Just ate lunch which was a ham sandwhich, pirate booty chips and then a whole can of French style green beans with cheese on top. I know those green beans are loaded with salt. (Leftover from thanksgiving figured why not test the salt and see what happens)

Would the diuretic handle all of that extra salt ? I’m scared to come off of it but also curious if salt really is a trigger.

Hi, I’m pretty new to Menieres (I started noticing symptoms about a year ago last August), ear fullness, tinnitus and low level hearing loss. It went away for about 3 months and then came back. I only went to a ENT because I felt it was weird that it was going on for so long, I didn’t go because I wasn’t able to function - I didn’t have vertigo or dizziness and so I saw my symptoms as pretty mild.

The drs I seen performed a audiometry exam, and confirmed low level hearing loss on the right ear and then sent me for an MRI (nothing unusual). Nobody mentioned Menieres (and I saw three ENT’s because each one said nothing seemed wrong with my ears). The 4th ENT I saw was the first one to mention Menieres and when I read the symptoms I thought, that’s exactly what I have (except the vertigo). Anyway for about 2 months I’ve been getting episodes of dizziness. They’ve never been so bad that I’ve fallen over and therefore I don’t know if I’ve had vertigo but in general I’m trying my hardest to hide from people that I don’t feel “right” and sometimes I feel sick from being off balance…

Am I on a path for this to get worse… what are your experiences?

I had a horrible vertigo attack (2+ hours, tinnitus) the other night that ended in the ER with meclizine and Valium. Combined with low frequency permanent loss and previous vertigo drop attacks, my ENT is suspecting bilateral menieres. I've had an MRI come back clean, I'm getting sent to the local medical school for a VEMP and other vestibular tests, so it's unconfirmed yet, just suspected. The uncertain waiting is so hard though.

I'm having such a hard time these last few days. I grieved the hearing loss, but made peace by thinking that it was contained to one ear and wouldn't get worse.

I'm scared and sad of the idea of more permanent hearing loss, and scared at the idea of having a vertigo attack somewhere unsafe (driving, work, etc).

If anyone has words of wisdom or support - I'm reeling a bit.

This go around , I’m having a really bad go with my menieres. My hearing is okay, just tinnitus , but the vertigo and nausea is non stop. I’m on fmla , but that’s just for a couple of days. I need major rest as my mental and physical body is failing me. ENT put me on diazepam and valtrax this go. Today I’m gonna ask my dr to update my fmla to give me a 2 week no work order. Stress and long days plus this is getting too much to handle for me. How do you all cope.

Hi all, I've been suffering from menieres disease since the last 6 months and had a 62% hearing loss in my last pure tone test. I got 8 dozes of intratympanic steroids from 2 different docs (first 3, then 5).

My hearing was better but then it has worsened again. Is it possible to take the drug periodically to keep my hearing intact?

Also, I'm having 24x7 vertigo since the last 4 days or so. By constant I MEAN IT. It never stops

A lot of the questions that new sufferers bring to this group could be addressed by reading the FAQ on the Wiki. Would it be possible to link to it directly on the homepage of the group? There are a lot of good resources there that I wish I had read 5 months ago. And would anyone be interested in working on updating the FAQ? I would be happy to contribute.

So I finally read the Wiki for this group (It would be great if it could be featured more prominently--less tech savvy users like me may not know what a wiki is or where to look for the hyperlink) and I saw a very interesting fact, which is that studies have found that upward of 80% of those suffering Menieres had Hyperinsulinemia, chronically elevated levels of insulin. There are also connections between diabetes and tinnitus.

Can anyone shed any light on this? Has anyone tried to address their Menieres or tinnitus issues by trying to manage their blood sugar or addressing Hyperinsulinemia? Does anyone have a sense that fluctuating blood sugar can impact their tinnitus.

I have had elevated blood sugar for at least 10 years and have had tinnitus in my left year for ten years. My blood sugar is in the pre-diabetic range and my doctor suggested that we look into it at the time of my next physical. He didn't suggest any connection to my ear problems.

Hi all just looking for some advice, I take 48mg Betahistine every day (2 x tablets 3 times a day) for the last 3 months. Initially I was on half that but I was still getting vertigo attacks. Things improved for the most part but I still had the occasional mild spell. Fast forward to 12 days ago and I’ve gone back to 1 or 2 attacks per day. This is making work a pain for me as it’s unpredictable when it will happen. I’m drinking over 2 litres of water a day, I don’t drink alcohol or caffeine and I’ve started reducing salt this last week and a bit. Today I’ve had 2 attacks alone. I spoke to my GP (I’m UK based) on Friday and I’ve been prescribed Promethazine hydrochloride to try, ha anyone tried this alongside Betahistine or on its own? To clarify, I haven’t been sick since taking Betahistine which I’m thankful for, it’s just the constant vertigo attacks that I’m struggling with. I have hearing loss in my right ear with some tinnitus which isn’t too bad and I can ignore most of the time. I have noticed the fullness feeling more of late as well. I’m due to speak to a specialist early next year about injections into my ear as well. So between now and then I’m just trying to find any medication that can help stop the vertigo attacks.

Any one else have sleep apnea along side their meniere's?

So Ik i have issues with balance, and its my 3rd year with MD ( menieres disease) I have been off the meds for some time now, just to give it a break, but I have nothing over the time that walk in dark areas also triggers a wavy sensation in me, my attack usually starts with feeling off balance and slightly vertigo, followed by tunnel vision where lights feels very overwhelming, and if I look around too much the vertigo increases, and busy places also is a big NO then, what to keep in mind at such times ?

Looking for a hack here!

Hey folks, just had my first violent vertigo attack.

I was diagnosed about 4 years ago with cochlear hydrops after some hearing loss, aural fullness, and tinnitus. For two years, Allegra worked to mostly make me symptom free.

Once that stopped working the low salt diet worked wonders for the past two years.

About a month ago, tinnitus and fullness crept back in, and no amount of salt, caffeine, or gluten cutting helped much. Eventually vertigo ramped up too, culminating in today's attack.

This morning I had intense tinnitus and aural fullness, and then Bam! The world was spinning, I was sweating buckets, and felt like death.

Ended up projectile vomiting everywhere as I tried to make it to the toilet. I spent the next several hours there emptying my system from both ends.

Eventually I was able to stumble into a bed and pass out while the world slowly stopped spinning.

Questions: Where do I go from here? Is there any drug or surgery that can help me? (I've been on Betahistine for two days so far - 16mgx2)

I have a corporate job and I'd prefer not to lose it... how??

Any advice or words of encouragement would be greatly appreciated.

Hi I was diagnosed with menieres by an ENT 2 years ago following a lifetime of fluctuating hearing loss and tinnitus.

Hearing loss for most of my life was in my left ear in the severe range and across all frequencies and I have some low frequency loss in my right ear until recently. I’ve worn a hearing aid in my left ear since I was about 13.

I’m now 43 and over the last 2-3 years my hearing in my right ear is all over the place with loss across the board and low frequencies often sounding v distorted. Hearing aids help but people still literally need to be standing right in-front of me with no background noise for me to understand what people are saying. Hearing loss can go from 0.5 days to 18 months and is down at the moment. I have no obvious triggers and I’m on a low salt diet, drink minimal alcohol, chocolate and caffeine. Getting down and apprehensive about any kind of social interactions that aren’t immediate family.

I feel fortunate that I don’t get episodes of vertigo, but I understand for most people that suffer with menieres this is a prominent diagnostic symptom.

Interested to know if others have a similar experience. Is it possible to have menieres without the vertigo? Are there any other conditions it could be?

Thanks!