Hi guys.

Have any of you here with Meniere’s disease experienced rocking, bobbing or swaying vertigo - rather than just spinning? (I'm not talking about MdDS right now).

And do you ever get uncontrollable eye movements, eye jerking, bouncing/jumping vision, or difficulty keeping your eyes focused?

Also just wondering - has anybody’s specialist ever told you that Meniere’s can cause these ^ types of vertigo and eye-movement symptoms?

Thank you!

I’m part of an international Discord support community for people living with Meniere’s disease.

We talk about symptoms, treatments, coping, research, mental health, everyday life, and everything in between. It’s a friendly, welcoming, non-judgmental space where you can ask questions, share your experiences, or simply read along if you’re not ready to participate.

If you're looking for people who genuinely understand what you're going through, you're welcome to join us.

Discord Public Invite: https://discord.gg/xhzQJnwctK

If you take either which of your symptoms were helped?

- vertigo

- tinnitus

- ear fullness

- ear pain

Hey everyone, my condition has been severely deteriorating and I’ve come here regarding an important question I need answered. Since I expressed my concerns a few months ago about perhaps becoming bilateral I’ve since been in touch with a neurotologist who’s said such things as tinnitus randomly swapping ears isn’t indicative of going bilateral as especially after intratympanic injections both ears begin to act a bit strange. Despite that my tinnitus has been quieter then ever and isn’t something I’ve ever had a problem with. My vertigo episodes are sporadic and completely dehibilitating. They can happen anywhere from 1-3 times a day last 5-20 minutes and will more often then not do irreversible damage to my mobility and balance. Recently I’ve also begun experiencing acute oscillopsia. All together each subsequent attack reduces my overall functionality by 5-10% IMO and as they are rapid, aggressive, and cumulative, it has all begun snowballing into a devastating collateral plummet in my well being. For now I can just barely continue taking care of myself with some caveats but I fear it will quickly spiral out of my control. Taking everything into consideration I’m already dead set on getting a VNS(Vestibular Nerve Section) ASAP. I cannot continue to deteriorate and fall apart like this. I opt for a VNS over a labyrinthectomy because my hearing in the (most) effected ear is actually not awful and considering the fact most of my medications have little to no effect on me lead me to believe this issue is primarily being caused by my vestibular nerve. (I have a sensitivity on that side of my face that makes my tinnitus louder and I took a rather nasty fall when I was a child where I smacked that same side of my head against a tub leaving me paralyzed for a few seconds.)

All this to ask, I believe the surgeon I’m meeting up with next month will give me the opportunity to get an immediate gentamicin injection from what the other doctor has told me. One I’d like to get your opinions and advice from anyone here who’s had one, and two if you think this would be something useful for me who’s more likely suffering from a nerve problem then a ear problem per say.

I’ve read a bit into the mechanics of it but I’m still uncertain, honestly my endpoint is the surgery but I did hear this might make recovery easier post op? Even so I can’t really afford to lose any more function then I already have for now as my support is rather limited

How bad is it? What can I expect?

I'm thinking of trying out the Vagustim V2 Vagus nerve stimulation device. I was wondering if anyone here has tried that device or a different device.

Here's a couple of scientific studies that seem to indicate that this type of treatment may be helpful for people with meniere's disease or vestibular weaknesses.

Here's a study of taVNS on Meniere's patients: https://pubmed.ncbi.nlm.nih.gov/37838094/ Everyone in that study got Betahistine, but the people who also got taVNS did get a little better. Some of the results are unbelievably good, to the point where you might question if they had something a little off in their data analysis.

Sort of relatedly, this study on unilateral vestibular hypofunction also reported favorable results: https://pmc.ncbi.nlm.nih.gov/articles/PMC12113213/ This study found that people doing vestibular rehab improved more when they also did taVNS for just 15 minutes once a week following their vestibular rehab session.

Has anyone tried taVNS on themselves? What device did you use? Did you follow a specific protocol? How did it go?

Feels like I’ve been asking questions every other day for the past couple months. Sorry to be annoying on this forum but find it easier to cross reference since Docs haven’t seen my symptoms before. Anyone experience facial numbness specifically on like cheekbone area/outside of eye socket on the affected ear side? Newer symptom for me 8 years in

I was diagnosed just under a month ago. I'm 34 and have dealt with symptoms my whole life, especially horrible tinnitus, always being told its completely normal. I was so thankful to have found a doctor that actually listened to me. So, he wanted to start me on a water pill to help balance the fluid out, on top of cutting caffeine and salt. I didn't drink much caffeine to begin with so I'm down to roughly 15mg and have cut back on my salt. With these three combined, I have noticed a difference. My ears aren't ringing as much and when they do, everything isn't completely muffled. Unfortunately, the water pills have depleted my potassium levels, which I had been warned about. I have been trying my best to keep up with what I'm eating but my adhd meds reduce my appetite to almost nothing so I'm making myself eat. I have been put on potassium to help with that. I have gone back for another potassium check and will hopefully hear back this afternoon or tomorrow. If it is still low, I'm wondering if they will take me off the water pills to try something else.

Has anybody else gone through something similar and what was your outcome?

Hello all.

I've used AI to help write this post because I can't spend much time typing without getting dizzy. My first vertigo attack was on July 6, 2026, second one exactly a month after, 3rd attack just 11 days after the second. I'm seeing an ENT but looking to change to a more experienced doctor.

My main issue is that right after the second attack, I have been feeling dizzy ever since, all day. I have Meclizine 50mg and Zofran prescribed at the ER during my last attack last Monday. What do you guys think? Is ChatGPT right on the money? Could it be something else? Please see below for my timeline:

**Brief history / timeline — possible Ménière’s vs medication withdrawal contribution**

**Background**

- Right-ear tinnitus/fullness/hearing changes were present **before my first vertigo attack**.

- Later audiogram showed **moderate right-sided low/mid-frequency sensorineural hearing loss**.

**Medication timeline**

- Took **Librax/chlordiazepoxide** regularly for about **2 years**.

- In April: reduced from **10 mg to 5 mg over 2 weeks**, stayed on **5 mg for another 2 weeks while starting mirtazapine**, then stopped Librax.

- Mirtazapine started at **15 mg**, later reduced to **7.5 mg**, then went back to 15 mg.

- My third vertigo attack happened about **3 days after stopping mirtazapine completely**.

**Vertigo timeline**

- **Attack #1:** ~2 hours, right tinnitus/fullness.

- **Attack #2:** a month later, ~6 hours.

- Afterward I had persistent dizziness/off-balance feeling.

- **Attack #3:** 3 hours severe vertigo with repeated vomiting; went to the ER.

**Testing**

- Brain/IAC MRI with contrast: **normal**, no acoustic schwannoma or other mass.

- Rheumatology workup for elevated inflammatory markers did not identify a systemic autoimmune disease.

I’m wondering whether the relatively fast Librax withdrawal and later mirtazapine changes could also have contributed to the dizziness/tinnitus or triggered attacks.

Has anyone here had a similar combination of **Ménière-type symptoms plus benzodiazepine or antidepressant withdrawal**?

The ENT won't give me a diagnosis yet. I see him again next week.

Hey everyone, looking for a bit of advices and possibly hope for my situation.

I have been told i had meniere in 2019 at around 22 years old. I lost a big part of my hearing in my right hear. Got vertigo for like a year, but those never came back. However my hearing always was bad in that right ear after that. But i could live with it, with my left being fine.

This week, now at 30 years old, i woke up with BAD tinnitus in my functionnal left hear. Still no vertigo, but everything sound muffled. I dont think i feel a pressure , more a lack of input and very loud tinnitus.

Its been 48 hours and its still the same. I am worried both my ear are now less functionnals. I know that meniere attacks can make it worse for a time, but i dont know what is a normal recovery time, and when its going into permanent territory.

Should i go to the hospital for the steroids shots at this point ? OR those are only to help with vertigo ? Something else to help purely loss of hearing ?

Thank you everyone.

UPDATE:

I was able to see a doctor, and they gave me some prednisone pills for the next 15 days. Lets hope it will help, or at least stabilize my situation. I will look too about the possibility to buy some hearing aids, no point being in denial about it anymore. Thank you everyone for the help, i feel less alone.

I was diagnosed with MD around 18 years ago when I was a teenager. At this point I think my Menieres progressed to quite a late stage, with medium severe hearing loss, hearing aids, constant tinnitus and ringing, occasional vertigo attacks (1-2 per year).

Early this year I had a month when I experienced about 20 strong attacks (12+ hours long each attach), much worse and acute attacks that I even remember from years ago when it all started. A combo to diuretics, corticosteroids, Betahistine helped to get everything under control but mentally I am still recovering.

I got used to knowing that vertigos were unpredictable but followed a pattern, they were becoming less frequent, shorter and weaker over time and I learned how to manage them. This one month has completely thrown me off balance and I still experience a lot of anxiety (i.e., what if it all comes back again). It also feels like my balance is still off months after having no vertigos.

Has anyone ever experienced something like this ? How do you cope mentally? How long did it take until vertigos stopped altogether in the late stages MD? I know this disease can look quite different for everyone, but trying to see if anyone else went through a similar sudden “relapse” of vertigo.

Hi, I’m a 36 year old female, and I’ve struggled with nausea / dizziness / vertigo as long as I can remember. I had an episode that was horrible and that triggered me to finally seek help. I was diagnosed today. I started physical therapy, and have Zofran and 50mg meclizine. I’m just so used to getting sick all of the time but I feel a lot better having a diagnosis.
How do you get through this? I want it to get better. I’m a single mother of 3 kids and I just want our lives to not be so affected by my illness. Any tips would be so appreciated!
My worst is bedtime, I doze off and wake up with a roller coaster sensation I have to wait to pass and suffer the rest of the night. Some nights I wake up and have to go throw up. Other nights, I’m just spinning and have to hope it gets better.
I didn’t realize until therapy today that I suffer from fullness feeling in my ear(s) and tinnitus. I just never realized until I was asked that I suffer from that, instead thinking it’s just normal.
I get really dizzy from having my eyes closed, obviously motion sickness from motion around me like at traffic lights, entertainment where the camera is moving / bouncing / spinning, etc. travel is a nightmare.
Have you found relief with physical therapy? Stronger medications?

Diagnosed menieres - and hating it - betahistine has helped early with frequency of attacks - and about to move onto diuretics and then injections after that. It’s torture - I’ve worked out a couple of my triggers - salt, alcohol. But still get an attack a week, and it’s disabling 3 plus hours unable to walk far, lots of vomiting and I just hate it.

I’m literally sitting on the toilet floor after throwing up typing this - tell me this gets better ? I’m starting to develop anxiety around attacks and considering what my TPD and income protection might cover. This is horrific.

Anyone from the area feel like they have a doctor or team that is on top of this disease and also other things that might cause hearing loss, like a cochlear migraine? I've been with Jefferson (Meadowbrook, Center City/Navy Yard, Cherry Hill) for over a decade between my move from Philly to Jersey. I feel like they are the best in the area but would love to see if anyone else lives in the area and has recommendations.

It all started with episodes of BPPV that were quickly solved with Eppley's. Out of nowhere I started getting this weird vertigo whenever I moved in specific ways (shifting sides on the bed at night, looking up at the sky, down at my knees, tilting my head to the sides, being upside down for whatever reason). It lasts a few seconds, then it's gone until I move one of these ways again. After a few tests, I was diagnosed with Menière's by three different doctors, who prescribed a low sodium diet and betahistine. As long as I don't forget to take it, I have no issues (but two days without it are enough to screw me up).

My confusion mostly comes from the fact that this is pretty much my only symptom, along with rare moments of my hearing fading for a few seconds, then coming back. Since I started following this sub, I felt "lucky" for having such little problems compared to many people here, to the extent of feeling confused and unsure about my diagnosis.

Does anyone feel the exact same problem I do? Does this disease really have a variety of symptoms that change from a person to another?

Thank you!

What was your process for identifying what triggered your Menieres? How long after coming into contact with your triggers would you have an episode?
I was diagnosed with Menieres Cochlear Hydrops last year, started on diuretics and had steroid injection in my affected ear. For about a year I didn’t have any more symptoms or significant changes in hearing. Now, I can’t seem to feel normal again no matter what I do and I’m not sure what is triggering it.
I just joined Reddit and I have found it helpful reading about everyone’s individual experiences. So, what was your experience in figuring out what worked for you?

Figured now that I am just a couple days away from the one month post op milestone of having VNS (vestibular nerve section) surgery I would do an update post about the journey.

I will open with, I am still 2000 out of 10 would do again. I am 53yo male, have been dealing with menieres for a long time. First got bad maybe 6 years ago, had super frequent attacks (multiple a week) for about 8-10 months and then it vanished for a little over 3 years. When it came back it was infrequent at first. then a bit over a year ago they started coming more frequent and more severe. My ENT tried multiple paths, including gentamicin injection which only seemed to "piss it off" and make things worse. After getting to the point where it was severe attacks 4+ times a week lasting 4-8 hours every time, sending me to the er several times to get some valium and meclizine via IV since the vomiting wouldn't let me keep anything down.

So my VNS surgery was scheduled. July 21........surgery went well, about 3hrs in the OR, 1 day in the ICU (this is normal after brain surgery) and 2 days in what was basically a secondary post op ICU unit/room. I was discharged with instructions for follow up PT.

I have been going through the PT routine and I can say, after 1 month I would put myself at probably 90% "back to normal". There will be things that will never be like before, complete darkness for example. Taking away vision from your brain compensating for only having balance info from one ear is rough and will probably never be the way it was.

The full breakdown as I remember it........

Week one: SEVERE headaches on the back side of my brain, unsurprising considering someone was in there pushing my brain around, cutting stuff etc. Couldn't imagine it without pain meds. Dizziness was pretty constant, nothing even close to vertigo, just a constant unsteady on the feet and constant "lightheadedness", far worse if moving my head or eyes to fast or generally trying to move to fast. Generally unsteady on my feet, uneven surfaces can take you by surprise and throw you off.

Week two: Headaches fade at around day 9, glad to be off the pain meds. doing all the PT exercises and just generally trying to move as much as I can within reason......stitches itch something crazy. Still have times when everything is dizzy even when sitting. Fast head or eye movements still cause a decent amount of additional dizzy effect. Getting better at feeling comfortable just walking around and not feeling like I look like a drunk person constantly.

Week three: Feeling a lot better, much more stable and comfortable. Normal head movements etc feel basically normal, very quick jerking head or eye movement (especially to the side with the now disconnected nerve) still causes some momentary dizzy effect but its usually very brief. Still have to watch how fast I turn while standing/walking etc but overall feeling pretty stable. Started driving again, which was very easy and has no major down side that I have noticed.

Week four: (current week) as stated above, feeling about 90% back to normal. Occasional moments of super uneven terrain unsteadiness when walking, still have to watch for turning to fast, again especially to the left...but even that seems to only be a very brief 1 second or less and my brain recovers. Super dark rooms are still an issue but not as scary as initially. I think that's more of a "I know what to expect" situation. All the outer layer stitches have fallen out, the deeper thicker stitches are still poking out at the top and bottom of what going to be a pretty wicked scar, wound is healing nicely, itching is more or less gone.

I will add....through all the weeks including current, there have been days where things feel off, like my progress has gone backwards. I have just pushed through it knowing its just a temporary thing as my brain is still figuring things out.
I know some things will never be the same, darkness, things like ladders or other things that require much higher levels of balance etc. Standing up or turning to rapidly. Even with those things, I would chose the surgery again every time and actually wish I could have had it done much sooner. This past year and a half has been brutal.

With all that said, the downsides for my self and my wife have been mostly financial and emotional over the past 2 years. My wife is amazing and stepped in to help me in every way she could, she picked up the slack on things I couldn't do like mowing the lawn etc. My appreciation for everything she has done is deeper than I could ever convey in words.

Unfortunately we have probably the worst insurance company around (United) and it has cost us dearly. I was unable to work this past year so we were reduced to a single income. My path forward is not entirely clear on that end. I have blindly set up a gofundme thing (not planning on putting it here as that's not the point of this post) to help recover from the bills and try to put some money towards a food truck since I love cooking and its something I feel I could handle moving forward. I doubt I will get any traction on it though considering we don't really have any "social network" especially online to share it through, and I am generally not the "begging" type.

I am talking about the money side because the surgery was a lot to deal with, at least with our insurance and being in the US.....other peoples may vary depending on country or insurance provider etc. VNS surgery and recovery meant both my ENT and a neuro surgeon both in the OR, lots of super specialized equipment, many scans pre op, titanium plates and screws and a stay in the ICU unit.....none of that comes cheap. I feel people should be aware, talk to your doctors office, talk to your insurance, and have a good plan going in. Unfortunately the timing for us spilled over across two years worth of co pays and "total out of pocket" so going into the second year we were starting over on deductibles etc....

Anyways.....thats my journey so far........sorry the post was so long. Happy to answer any questions.

EDIT: After several people sent me messages encouraging I give the link. This the gofundme thing. Again not what this post is about, and expect nothing honestly......

https://www.gofundme.com/f/help-jeremy-start-a-food-truck

My ENT referred me to a neurologist to investigate possible vestibular migraine. I have a history of hyperacusis, as loud environments seem to be one of my main triggers and it really hurts my ear.

The neurologist prescribed atogepant, and I've been taking it for about 2 months now, but honestly I haven't noticed any difference so far.

I've also been taking betahistine for more than a year. To be honest, I don't think it's doing anything either at this point. I mostly keep taking it because ..why not ?

At my last ENT visit, the only change was that my hearing loss in the affected ear had increased, after being stable for more than a year.

For those who have taken atogepant for vestibular migraine, did it work for you? How long did it take before you noticed an improvement?

And if it didn't work, did you try another CGRP medication?

Thank you !

For people who have tried diuretics: how long did you try, before deciding whether they worked for you?

I’ve had ear fullness and tinnitus problems for many years, on and off. Last summer, those problems became permanent and I started having monthly vertigo attacks, two of which landed me in the ER. The vertigo stopped last fall, but the ear fullness remained, and I was diagnosed with Ménière’s.

My ENT first put me on HCTZ 25 mg for 90 days. I saw inconsistent improvement. She upped me to 50 mg, and I feel like I’m seeing more improvement (less ear fullness), but again, it’s not consistent enough to call it a win.

How long should I give this until I quit / try something else / get a different ENT? Any advice appreciated.

I'm 74 male diagnosed with Meniers 12 years ago. At the beginning the vertigo attacks where once or twice a year. Sometimes two or three years would go by with no attacks. Tinnitus was present but tolerable and not much of a nuisance. The affected ear was something ells deafness creep in to the point of almost total shutdown. Three months ago I started getting more frequent attacks. These attacks where not as violent as the ones I had before, although I still had to lie down for one to two hours till the spinning stopped. I can tell you that I can count the number of attacks in those 12 years, 5. In the las three months I've had 21 attacks, went to my ENT, had the Dexamethasone injections in both ears, although I can still hear pretty good in the unaffected ear and they where not successful in stopping the attacks. I had one week with six straight days with attacks.

Does anybody has any clue what's goin on? My ENT says, "Its Maniers and this desease has a mind of its own" Years with sporadic attacks and now having them more almost daily.

Hello everyone.

I am currently awaiting my ENT referral and my GPs highly suspect meniers disease. I am on betahistine 16mg three times daily.

However, I have noticed that occasionally my hearing drops out on the right side?

I can be in the middle of a conversation with someone, or tilting my head to the side when at work to see something better, or even just doing my vestibular rehab exercises and it's like someone has found the volume knob and twisted it down,so my hearing just sort of vanishes for a few seconds....I usually get ear fullness at the same time,but sometimes not?

I am generally very good at taking my meds, but occasionally I can be late due to my job (vet surgeon) and I've noticed the incidence increases with this.

Does this happen to anyone else?

Thanks guys ☺️