If that’s your life, you’re not alone, and you’re not exaggerating. Meniere’s affects the inner ear and brings spinning attacks, fluctuating hearing loss, tinnitus, and ear fullness. It’s unpredictable, it’s invisible, and it’s seriously under-discussed.

I started a community on discord so nobody has to figure it out solo. We share what we’ve learned about triggers, treatments people have tried, and how to keep living a full life around the attacks. We’re not doctors, just people who get it.

I would deeply appreciate your support through upvoting, sharing, and joining the support group, whether you are dealing with Meniere’s yourself, a family member, or someone who can help amplify this message to others who might need it.

You're welcome to join our discord support group community
Invite Link: https://discord.gg/xhzQJnwctK

My Dr gave me Clonezapam which is similar to valium but in liquid form. I'm not a fan of the liquid form so they gave me valium. It works great for dizzy spells. Brings me back quickly, relaxes me. I'm told this means that anxiety and vestibular systems may be linked.

I know its addictive and once you do it daily, weaning off is risky.

Anyone else using this family of drug for Menieres? Long term?

Curious as it's the best thing I've seen to help. Betahistamine works most of the time, but occasiaonlly my attack breaks through and valium gets me back to normal pretty quickly.

Symptons are Sept 25 first flair right ear, low freq hearing loss, hypercausis and tinnitus. I cut coffee this seemed to help. Another flair (march 26) in both ears with low frequency hearing loss and other symptons, prednislone fixed this. Third flair, worst so far in Oct 26, both ears same symptons. Prednislone helped but took more time, then one week later I had vertigo and my hearing is still fluctuating up and down while on prednislone.

I've not had any tests but have an upcoming ENT appointment and want to start trying some new treatements and seeing if there is anyway rule things out but don't know where to start or what tests to ask the doctor to run.

The ENT wont likely be a specialist in my conditions so I'm looking for the biggest hitters.

I’m told I don’t have bppv…but I do the epley for my bad ear side and it makes me dizzy and then it helps alleviate that daily off-balance feeling. saline rinses alleviate the intense sinus and head pressure, though my bad ear is still mildly full and ofc ringing loud.

is this normal with menieres? they even tested me for crystals and said I don’t have them. but i’ve had attacks (hour long ones, so idk if that makes sense for bppv) triggered by looking down, looking up, rolling over in bed, etc…

my current doctor honestly has given up trying to figure me out so that’s why i’m asking here instead. plan to see a new one though and maybe they’ll make sense of it.

so my doctor thinks i have cochlear hydrops and have hearing loss low frequency which only gets better while being on steroids.

my hearing loss is mild (20-30db) in lower frequencies

what is bothering me the most that everything vibrates in my ear/head. like every sound causes pressure or vibration feeling in my ear / head. is this common?

outside i don’t think loud noises bother me but inside they do maybe because i’m really anxious all the time.

is the vibration with every sound similar to some?

I have menieres, did the 3 hours testing back during covid (2020 I think) I have the severe kind(yay me). My attacks/flares last 4 days 24/7 minimum. The longest was 21 straight days. Anyways, past month or so, I've been dealing with tinnitus 24/7, eat fullness, but I've been having vertigo that lasts just a few seconds(obviously prefer over the days) I can be sitting, standing, laying, walking, changing positions in bed etc. Also been dealing with balance issues. My hearing has also gotten worse. Does anyone know what this could be? Like is u it just that time of year or something else? Usually I just get the ringing and ear fullness and the flare for 4 days so this is different. Sorry if this is confusing

Hi - I’ve just had my first attack while driving for work - completely debilitating and needed family to come and rescue me. It’s upsetting because it’s the first time it’s caused significant challenges with work (I spent a lot of time travelling) and somehow have most of my attacks at night late afternoon - ( weird hey) I’ve also had a full panic attack today feeling it coming on while on the highway and now upset and freaked out about the future.

I’ve got income protection insurance and have been paying for this over a decade - I feel like I am going to have to formally notify my employer what’s going on - they are nice people and aware but feel like I need to do something formally and maybe also with my insurance provider - even though I’m still working ?

Who’s navigated this before ? Best way of next steps ?

I’m devo and 6 hours of vomiting wasn’t fun

A couple of years ago, I went to an ENT doctor and he told me I had Meniere’s disease. He prescribed sublingual allergy drops (to put under the tongue) to target food allergies that can trigger the disease. The custom mix targeted things like corn, dairy, and wheat, and I responded really well to it, it made me feel 1000 times better. Unfortunately, that medication is $400 a year, which I just can't afford right now.

Over the last few years, these issues have been happening on and off. Sometimes I'll have zero symptoms for a few months, and then they'll randomly come back.

Right now, they're back and happening almost every single day around 2:00 or 3:00 PM. I start feeling very, very woozy, and that wooziness sticks around for the rest of the day. It’s absolutely horrible, makes me feel nauseous, and leaves me feeling like I’m on the verge of throwing up. Tonight, while I was cooking, I actually threw up twice from the dizziness. It definitely gets worse when I'm overheated, too, and I have constant tinnitus.

Looking back, I keep wondering: Is it really Meniere’s?

Does this sound like anything y'all have experienced, especially with it coming and going like this? I'd love to hear your thoughts.

My wife has menieres. When we’re out she can’t sit on any bench or at any table in a restaurant that isn’t level. She finds it very uncomfortable and tiring to do so. She wants to know if she the only one like that.

Hi all! Just generally wondering how much sleep you all need to keep your symptoms at bay?I always had a bit of a high sleep requirement, the past 5 years or so would try and get 8-9 per night, but after having a drop attack in June I need at least 11 to feel functional...was wondering if anyone else has noticed changes in sleep patterns since being diagnosed?

So I had two episodes last week. A massive one on Tuesday (8 hours) and a smaller one on Thursday (4 hours and not as bad). Went back to work today and it was harder than I expected.

How long can the general dizziness linger after an episode?
I felt like I was drunk at work
(Newly diagnosed)

Not for me yet, but I just found this Instagram channel of a lawyer that makes videos explaining how to get disability. What to say, how to act, etc.

He's also on Facebook.

https://www.facebook.com/share/1DZtjANMt7/

https://www.instagram.com/linerlegal?srtk=bzdsdzRweW5uenM0

I'm asking as one doctor in Latin America said earplugs are bad.

I used to use them all the time when I went to noisy places, and even when I slept sometimes.

The night my Menieres was triggered, I had a silicon earplug in my ear at a noisy establishment.

I didn't wear my Loop that day. Loop is stronger and reusable with washing.

Now, I'm afraid to go anywhere even mildly noisy. I want my life back where i can at least go outside and put in an earplug if necessary.

Salut 👋 j'étais en train de tailler ma haie au sécateur tranquille chez moi, on est dimanche, j'habite dans un lotissement CALME parce que je suis entouré d'arbres et de vieilles... Et là j'entends une mobylette depuis un moment qui fait des allers retours pas loin de chez moi, j'aurais dû aller chercher un casque parce que j'ai senti la pression dans mon côté gauche, grosse crise de vertiges, je m'assois par terre le temps que ça se calme et là le gamin se ramène devant mon portail, devant la haie que je taille, j'ai tanguais jusqu'au portail et j'ai vu qu'il s'était arrêté, je lui ai hurlé de dégager de chez moi, que c'était une impasse et qu'il faisait trop de bruit 😡 il n'est pas revenu. J'ai peut-être été excessive mais j'ai acheté cette maison pour ne pas être dérangé...

Hi everyone. I was having repeatedly hydros attacks and getting hearing lost, therefore mu ENT and reumatologist prescribed me MTX and low dose prednisone and it was working so far since 6-7 months. I am not getting any attacks since then however dont feel that MTX does anything.

Prednisone was always helping me to recover at such attacks. However i am not sure about mtx. There were times i missed taking MTX due to other sickness and nothing happened, but when i miss the prednisone that day ( im taking 2mg prednisone daily) the next day the ringing starts. And I takse prednisone and 2-3 days later all gets better, no or small ringing.

Anybody had similar? I am feeling that I don’t need MTX but just prednisone. And I don’t know how to get rid of that eather since I don’t know what it does to my body wit longterm low dose usage ( except gaining weight)

So far it's been working well for me, and it only took a few days.
I've heard that you stop after a month, and I've heard from others that you never stop.

Severe vertigo, left sided moderate-severe hearing loss + this new SP/AP ratio finding received today. Is this a definitive diagnosis of Ménière’s? Can’t get into doctor until next month. So I have no idea what’s coming.

Does anyone take betahistine and zepbound together? My pharmacist told me he can't tell me if there's any interactions between them because betahistine it's not FDA approved in California so I got it in a trip to mexico! I'm currently on zepbound but im afraid there's might be any interactions!

Hi everyone,

I was never diagnosed with MD. What doctors have suggested is VM. What you should know is , I have ADHD and an anxiety disorder.

When my symptoms started 9 years ago , it was traumatic and I was extremely suicidal. I did all the tests and my doctor diagnosed me with VM.

VM and MD have overlapping symptoms. My adhd won’t allow me out of the loop and my anxiety keeps on checking for reassurance. 3 years ago I was so petrified that I had MD and I would go completely deaf that I ended up in the ER with extreme suicidal thoughts. It sounds ridiculous and silly but I thought my life was over and my anxiety made sure it was true.

My anxiety won’t let me believe that I have VM. Everytime my dizziness peaks its head, the old fears and thoughts come back. My doctor who is a specialist in this area has reassured me multiple times that everything I told him points to VM not MD.

I have overlapping symptoms with MD. Ear pressure , tinnitus , dizziness , sometimes vertigo but no hearing loss at all for the past 9 years.

I keep telling myself that there is no way you have MD with absolutely no documented or experienced hearing loss for 9 years.

I’m not sure what I’m asking for here. Maybe feeding my anxiety with reassurance again but I also want to know if there is even an inkling of real doubt about my diagnosis. I’ve had really bad experiences with doctors and the trauma follows me everywhere.

So, is it possible to have MD and not experience any hearing loss or documented hearing loss for 9 years?

I am being evaluated for Ménière’s and vestibular migraines. Very debilitating symptoms, etc. I’ve been in two different health systems (after moving ). In both health systems, my evaluation was coordinated by a nurse practitioner or physicians assistant. Is this a common arrangement for Ménière’s and vestibular migraines? That the care is not coordinated by, for example, ENT doctors? Does care fall onto my (wonderful and talented) PAs and nurse practitioners because there’s no money in procedures or treatments. With something this debilitating, I would expect to be under of the care of ENT physician. What am I missing?

Here is some info about me:

- I was diagnosed with Menieres 6 years ago by my ENT.
- My violent spinning episodes used to last hours, now they last for a lot less (sometimes minutes) if i lay down still and deep breathe
- My affected ear is the left one, I HAVE to sleep on that one or else I will feel very uneasy.
- If I sleep on my right side, I will wake up with a vertigo attack
- I get migraines every now and then, maybe once or twice month
-I have been taking betahistine for the past 2 years, and it definitely has allowed me to eat a bit more freely
- I cant be anywhere nowadays without feeling unstable or uneasy or lightheaded
- My ENT said I dont have BPPV, but when I look up a little too high, or turn my head the wrong way, it can trigger a dizzy spell or I just feel super unstable after

Does anyone else know the difference? It seems the symptoms can be caused by the same things and present the same way.

Thank you for your time and I hope we can all get through this together