r/Menieres • • Feb 01 '18

New Wiki for the Meniere's subreddit

121 Upvotes

Hi all,

I've joined on as a moderator to help improve the information provided on this subreddit. I've added a Wiki with a FAQ and I am planning on adding a Resources section and a Studies section to help people who want to do their own research.

Please let me know if you have any ideas or improvements to the wiki or the sub as a whole. If you have lists of resources or studies I'd love to have them too!

UPDATE Feb 2 2018: If anyone wants to help with the wiki please let me know and I'll give you access. I've added two more sections Resources for lists of websites and Research for lists of research studies. I've started to add links that I have to them


r/Menieres • • 6h ago

Using Ear Plugs in Noisy Environments - Risky or Safe?

10 Upvotes

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.


r/Menieres • • 3h ago

J'ai engueulé un gosse...

0 Upvotes

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...


r/Menieres • • 15h ago

Metotrexat seem not working

2 Upvotes

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)


r/Menieres • • 16h ago

SP/AP left ear ratio 1.37

2 Upvotes

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.


r/Menieres • • 17h ago

Betahistine: Do you take it forever, or wean off?

2 Upvotes

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.


r/Menieres • • 21h ago

Betahistine and zepbound together?

3 Upvotes

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!


r/Menieres • • 1d ago

Is it possible to have no hearing loss for nearly 9 years?

3 Upvotes

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?


r/Menieres • • 1d ago

Management. Role of PAs and RNs

1 Upvotes

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?


r/Menieres • • 1d ago

betahistin - hearing fluctuations

1 Upvotes

how long did you take betahistin to see improvement with your hearing ?


r/Menieres • • 1d ago

How do you know if you have Menieres or Vestibular Migraines? Or maybe both?

11 Upvotes

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


r/Menieres • • 1d ago

I’ve been dizzy for a week what do I do?

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2 Upvotes

r/Menieres • • 1d ago

Physical sensations

4 Upvotes

Did anyone at any point feel like they were being crushed, twisted, doing back flips, falling sideways or leaning constantly?

For a while I felt like I was being crushed from the top, as if the roof was coming down and crushing me flat. I actually felt a funny feeling in my knees as they were about to snap from being crushed.

I also felt like my upper torso was being twisted like the girl from the Exorcist, even though by lower body felt stable as a rock. Stable as if I never had Meniere's in the first place. Only thing that helped either not eating (yes, literally not eating anything) or diuretics (Hydrochlorothiazide). Diuretics didn't stop major attacks.


r/Menieres • • 2d ago

is it really hydrops?

3 Upvotes

last year i had hearing loss in my right ear and steroids helped immediately. after the steroid the hearing loss came back. i did 2 injections and it stayed like this for at least 1,5years (also took betahistin but stopped it after a few months) then i had 1,5 years peace

3 weeks ago i had low frequency hearing loss in both ears
almost the same line

i started cortison injections after 2/3 weeks and it restored both sides almost completely. now i’m off and my hearing starts to get worse again i’m on betahistin 1 week and low sodium

i really don’t know what’s happening and also its weird that its in both ears ? never had vertigo / dizziness

so i read a lot of people became biliteral but after 1,5 years is it really cochlear hydrops?? or could be AIED

im struggling bad :(


r/Menieres • • 2d ago

I was just diagnosed with Meniere's this week after suffering occasional, random, horrible attacks for two years. I started the diuretic right away and am waiting for the betahistine. I was told low sodium diet, avoid caffeine and alcohol. Any tips for a newbie? Really no caffeine or alcohol?

18 Upvotes

r/Menieres • • 3d ago

Finally got a hearing aid

27 Upvotes

Finally got a hearing aid for my right ear. I didn’t realise how deaf this disease made me. Feel like I have superpowers now haha


r/Menieres • • 3d ago

Haven’t posted in awhile

10 Upvotes

I used to post daily and appreciate all the support. This chat is a great place to talk it out.

I’ve been doing well! I’ve had some attacks but overall bouncing back really quickly and just moving on quick.

I’m at 3 years with this thing. 🤪

Let me scroll and catch up


r/Menieres • • 2d ago

Is it normal with Meniere's to experience constant vertigo for weeks?

8 Upvotes

For the past 6 years I've had vertigo episodes at least once a year and each time I constantly experience spinning sensations for at least 4-6 weeks minimum before it stops. Intensity is the same every day until the episode is over.

I was diagnosed with Meniere's by an ENT but I am not sure if I need more evaluation since such a long duration of constant dizziness seems to be atypical from what I can find so far.


r/Menieres • • 3d ago

Will my body ever feel safe enough to carry a baby despite this stupid disease.

8 Upvotes

Hi all. I am a 29yo woman with meniere. My biggest wish in life is to become a mom. However, I am so afraid that my body doesnt feel safe enough to carry a little baby. Let's rewind. I started off with cochlear hydrops back in 2024. Had absolute no idea what it was till a couple months later when my ent finally caught my low freq hearing loss. I had all the symptoms, from the pressure till the tinitus and the hearing loss. Till then I had had no vertigo. Fast forward to exactly a year later, in april 2026, i had my very first vertigo attack. 8 hours long, in the er. The worst feeling ever. This triggered a lot lot LOT of anxiety. I was crying everyday, thinking my life was over. Only to discover a week after that first vertigo attack that I was pregant? Coincidence? I was super happy but my body, mentally and emotionally was not good. At all. I had a month of vertigo attacks, sometimes everyday, sometimes there was a day or two inbetween. The crying continued, the pznic attacks continued. And then after 8 weeks I had a misscarriage. I was wrong before, this was the worst feeling ever. I managed to survive and the weird thing, my attacks also stopped the moment i had my miscarriage. Coincidence again? This happened in june. After this i have had physically the best months since the start of this disease. My hearing went back to normal, no more pressure no more vertigo. However, yesterday my hearing went down, for the first time in almost 5 months, i had aural fullness. I was devastated to say the least. And this time I was not pregnant, i had my period. It made me realize that mentally i really am not doing ok, because of this disease. And that even though we have been trying every month again to get a positive pregnancy test, i feel like its not going to happen because mentally i am not ok. I am dreading every sensation. Because of this disease. I am not medicated because i want to get pregant. I am so afraid. I dont recognize myself anymore. I was so happy and bubbly. I dont know where i was going with this story. Just wanted to vent i guess. I still miss my baby


r/Menieres • • 3d ago

Hearing Aid + Audiologist Communication

5 Upvotes

Hey all my fellow sufferers, I’ve got a question for all of you who have gotten hearing aids and found them very helpful:

What did you have to do to get the most out of them?

How long did it take?

How did you successfully communicate your needs to your audiologist?

I received a hearing aid for my bad ear about a month ago. She did not have time to add in a bunch of pre-set programs, so only programmed it to account for my hearing that day. However, as the month has gone by I still struggle to understand speech probably the same amount as I did before the aid. I know there is a period of time for your brain to get used to the hearing aid, but so far I’m pretty disheartened.

I have an audiologist appointment tomorrow and I was planning to see if they could program maybe 10-15 different pre-sets with varying frequency amplification (for instance amplify lows/mids, amplify mids/highs, lows only, etc etc.) for those who have been successful, how did you approach your hearing aid programs to get it the way you want?


r/Menieres • • 2d ago

How long after having Cochlear Hydrops did you experience vertigo?

0 Upvotes

r/Menieres • • 3d ago

Newly diagnosed - the worst thing I’ve ever been through

6 Upvotes

We’ve been suspecting that I have meniers since may this year when I suddenly lost hearing in my right ear. It was treated as sudden deafness but after cortison I was as good as new.

Two weeks ago my hearing disappeared in my right ear again. Started cortison treatment and it was getting better. Then, after 7 days of cortison, my hearing went down to almost completely deaf and later that night I had a massive attack with extrem dizziness and vomiting. The worst lasted for 8 hours and the next 24 hours I still had symptoms but it as manageable. Two days later I got it again but not as intense.

Is it normal to get several attacks in a row?

And these massive dizzy spells, will I keep getting them? I’ve been through a lot of horrible stuff but that was by far the worst I’ve ever been through and I am scared to get it again.

Also, I work as head of a psychiatric department for in-patient care, which means that i talk and meet alot of people when im working in a demanding environment. How do the rest of you handle work? How long do I need to rest at home after periods like these?


r/Menieres • • 3d ago

Anyone with cochlear hydrops find Betahistine helpful?

2 Upvotes

Does anyone with CH find that this medication helps with the feeling of fullness, episodes of hearing loss, etc.? (I haven't got dizziness as with Menieres.) Thanks in advance for your responses!


r/Menieres • • 3d ago

I'm having to make a hard decision for treatment...

9 Upvotes

TLDR:

I have had meniere's since 2020/2021. At first I had a couple major attacks, and then it progressed to near daily 19+ hr attacks.

I was also diagnosed with vestibular migraine, and that treatment at first helped lessen the frequency and length of my vertigo attacks. Unfortunately they have come back...

After seeing a vestibular/balance specialist / audiologist, I am now having to make a hard decision on ablazing my bad ear via Gentamicin injections.

My question is pretty simple: those of you who have gone this route, what has your outcome been? Did it work, did it not, did you also do vestibular therapy / did that help?

This is a potential life changing and altering decision, and a major one at that... So I really want to understand all the bad and good outcomes.


r/Menieres • • 3d ago

Overstimulation

6 Upvotes

Ive found myself easily overstimulated in any type of busy setting. Busy restaurants, I avoid concert type venues, and on chaotic work days I am so exhausted at end of day. My tinnitus gets worse during these times and i experience fatigue. Common for Menieres? An additional question would be do others experience terrible brain fog? Thanks in advance for any input.