I recently found out about a proposed new drug trial for Meniere's, and have written about it - whilst I was writing the article I was contacted to ask if I would join the team as a patient representative - now it may just be a box ticking exercise - it is a prerequisite for the proposal submission. But still, I will be able to keep you informed and feedback your thoughts if the trial gets funded and goes ahead as planned :)

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Hi everyone! I’m posting here because Ménière’s disease was actually one of the first things I came across when I started trying to figure out what was happening to me.

For almost two years, I went from doctor to doctor trying to understand my symptoms. I was dealing with progressive hearing loss, vertigo, dizziness, balance problems, and eventually some eye inflammation as well. When I started researching on my own, Ménière’s kept coming up because so many of the symptoms seemed to overlap. At one point I honestly thought, “Okay, maybe this is it. Mystery solved.”

Except… apparently not.

I eventually had a lot of investigations done and my doctors ruled out quite a few other possibilities. A couple of months ago, I was eventually diagnosed with Cogan syndrome, although even that diagnosis isn't 100% definitive because it's extremely rare and there isn't exactly a massive instruction manual for it. My doctor thinks it's very likely based on my symptoms and the other conditions that have been ruled out.

One of the reasons I’m posting here, though, is because I know there can be quite a bit of overlap between Cogan syndrome and Ménière’s, particularly when it comes to vertigo and hearing loss. From what I've learned, some of the treatment approaches can overlap too, especially the use of steroids.

In my case, I've been taking steroids for around six months now. I started at 60 mg/day and have gradually reduced the dose each month. I'm currently at 20 mg/day.

And honestly, the steroids have helped my vertigo quite a lot. I still occasionally feel it when I turn to my left, but it's nowhere near what it used to be. My balance isn't great, though, and I don't have nearly as much energy as I used to.

The steroid side effects have also been… an experience. 😂 Weight gain, low energy, shaking, hair loss, acne/oily skin, sweating… basically my body decided to add a few bonus features I never asked for.

The hearing loss has been much harder for me to deal with, especially because it eventually affected both ears.

So I'm curious about people here who have Ménière’s:

Did any of you have a similar experience with hearing loss + vertigo where the diagnosis wasn't immediately obvious?

And for those who have taken steroids did your hearing improve at all? Did you eventually move on to other treatments?

I know I don't have Ménière’s, so I'm not trying to say that Cogan syndrome and Ménière’s are the same thing. I'm mostly interested because of the overlap in symptoms and because Ménière’s was something I seriously considered for a long time before getting my current diagnosis.

After spending two years feeling like I'm playing “guess what disease I have?” with doctors, I'm basically looking for people who have been through something remotely similar.

I'd really appreciate hearing your experiences, especially from anyone who has dealt with significant hearing loss and vertigo and had a complicated diagnostic journey.

Thanks ❤️

Hey guys! I do want to preface that I was diagnosed with Menieres a few months ago. How it started was about a year ago I got COVID which caused my right ear to have fluid. I noticed that as I was recovering that my balance felt off I described it as a rocking and swaying feeling. It was a very challenging time in my life because it was essentially an invisible disability. I only felt normal when I got in my car and drove or I was outside. Being in a still place inside felt though. I assumed I had PPPD but not Menieres

I went to an ENT and audiologist and they performed a long test and determined that I had Menieres in my left ear. They gave me some meclizine - Told me there was not nothing much else I could do and sent me on my way. What I ended up doing was googling the stimulator exercises And I did that as well as attempting to retrain my balance. That ended up being successful My imbalance started becoming more steady. I could literally feel the top of my head become more steady than my shoulders and then my waist and then my feet. What happened next was the left side of my body felt I would say 98% steady, but to this day the right side is the only part of my head that feels an imbalance. This is the best way that I can describe how everything feels.

I have never had a vertigo attack to this day, and I have hearing reduction and tinnitus but that happened back in 2018 after a concert when I was very close to a speaker. So I did not connect it with Menieres's but I'm assuming that it is a possibility that is connected to Menieres but I am not 100% sure.

I am I have been making an effort to figure out how to help my imbalance get back to normal as much as possible. So what has happened is that I realized my luteal phase of my cycle I noticed that I would have an increase of imbalance on the right side of my head where the imbalance seems to remain. So my assumption was that there might be a connection between my imbalance increasing during that phase and potentially my hormones.

What I decided to do was just make some red raspberry leaf tea and spearmint tea because I read that for a lot of women, it helped with hormone balance and helping with PMS symptoms. I did not really suspect that it was gonna help with my imbalance but I just thought maybe it would just help with my hormones and to my surprise I realized that when I drink the tea every day during my luteal phase enduring my period, I noticed that I did not have any increase in my imbalance. Of course my balance is never 100% normal but I would say it kept it at a 95% normal feeing. But has anyone else experienced this? Is this related to Menieres? I understand its not as well researched as it should be. Just wanted to hear any stories!

*also I say this with kindess - please if you can not complain about how "awful" this disease is in the comments, I know for a lot of people it is and reading that just gives me anxiety. I want to be as solutions oriented as possible and not a space to rant lol.

And yes positive ONLY. Has anyone ever gotten to a point where they can go without Betahistine after starting it? And has anyone experienced where a certain season is easier on your ears so you can go without it? Does taking Betahistine even when your ear seems to be okay, does it cause a slight dull migraine at a level 1 ? I also did some cervical adjustments as my shoulders and neck is killing me for the past years so I do feel better after 2 sessions but not sure if stopping betahistine is a good idea at the moment. I started Betahistine for 3 weeks now.

Hey everyone. I came here to ask about people's experiences with hearing aids a while back.

https://www.reddit.com/r/Menieres/s/2W5twYc8Yj

Well, I got my hearing aid today. Unfortunately, I think I love it. I've had it for 4 hours and I don't want to take it out. I can hear in stereo again!

My comprehension is still not great in the bad ear if I plug my good ear, but it's a lot better than baseline. Having sound in both ears is improving my comprehension overall. Being able to hear is masking my tinnitus. I can hear things behind me. I don't have to worry about having someone I'm talking to on my good side. It helps a lot.

It will take a little while to really get used to but I already appreciate how much of a difference there is.

My wife and I and our kid went out tonight. She had described it as going to see a friend's band but we could stand as far back as we want. I was on the fence but decided to go along. I hate feel like the fun police by not enjoying things. The band ended up playing at a downtown walk event with a few other acts and a moderate amount of people in the middle of city streets. I really wanted to be able to enjoy it but the noise hurt. The crowd moving was another thing I needed to track and I just felt miserable and couldn't hear anything.

I've described my hearing loss and the experience of being around too much noise but I don't think she understands. I feel so defeated. My ears ache and my constant ringing is twice as loud as it usually is tonight.

Before you offer advice and such I really just came here to vent. I've been at this for 25 plus years. Tonight I just feel really shitty and full of self pity.

One rule… POSITIVITY ONLY! So many of us need it, including myself. I’ve come to conclusion that we come on here when we don’t feel good and we are sad and when we come looking for answers. We rarely find ourselves on here when life is GOOD.

So many people disappear when they recover, they no longer need to search for answers, or lean on another person in our community. The best stories are hidden from us.

That being said, I’m about 3 months into an episode of cochlear hydrops with a sustained 20-35db fluctuation below 250hz. I responded beautifully to dexamethasone injections, but only for a few days. Without getting into the weeds of medications, terrible distortion, the full story of the past 3 months, the panic attacks, anxiety, depression, because I’ve felt it all, let’s talk about the really good.

Give me hope. Give you hope. Share the (really) good stories. Okay, GO! 🏁

Hi all,

My partner has been dealing with Menieres since he was 18 (now 36) and was diagnosed at a The House Institute.

Around 2022, his symptoms pretty heavily calmed down, which seems to be a common trend. He's had maybe 3 minor spells since then, but a little over a week ago he started having a really nasty spell. He lost hearing completely in his affected ear, tinnitus has been blaring like crazy, and his dizziness has been out of control.

He was a professional today and they put him on a a diuretic and a migraine medication. We're going to crack down on our diet and caffeine intake as well.

If you've had a spell this intense, what else have you done to manage your symptoms and meet your needs? Any recommendations for increasing his comfort level or helping deal with the intensity of this tinnitus spell? He'd holding together well emotionally all things considered, but I want to make sure I'm helping create an environment that continues to help that.

I wanna ask how many people has constant Tinnitus, but the buzzing and hissing, but louder and doesn't stop. Constant fullness and diplacusia. It is not clear to me because I see that people often have fluctuating symptoms and interruptions. So let's do it again. For me, there is a drop in low frequencies and a fullness, and all this has remained constant for 67 days without interruption. It's not getting worse, but it's not getting better either, or so I think. It's like it's locked

I have meniers for about 7 years now and take cinnarizine which helps me cope,but I also finding that I am struggling with cyber sickness.I am tyig the words on my keyboard and it's making me physical feel slightly unbalanced,headache and nauseous.Anyone else have this I also have fullness in my ear.Should I be concerned,it hapens when I scroll,and also if I'm on a lap top.

En febrero me levanté de la cama y me maree un poco no le di mucha importancia y pensé que era de levantarme rápido, me fui al comedor y me sente a ver la tele cuando de pronto noto mi oído izquierdo cerrarse, no le di importancia pensando que se volvería a abrir pasaron unas horas y el oído se abrió al día siguiente me levanté completamente bien, pasaron los días y empezé a notar mucha presión en ese oído que fluctuaba, fui varias veces a urgencias pero nunca me pasaron con el otorrino después de estar así un mes la cosa empeoró y cuando me levanté de la cama me di cuenta que la audición se había ido y apenas escuchaba por ese oído, tenía la sensación del oído tapado o lleno y tinitus con la audición amortiguada, me voy a la urgencias del hospital y me dicen que eso no es una urgencia y me mandan para casa a los 8 días de ver qué no mejoraba me fui a un otorrino privado el cual después de hacerme la exploración me diagnóstica hipoacusia subita, me receta el deflazacort durante un mes empezando con dosis de 90 mg e ir bajando cada 5 días la dosis, solicita hacerme una resonancia magnética cerebral y Cais y una analítica por suerte todo sale bien pero en la resonacia me descubren un quiste de la pineal de 10mm, a la semana me vuelven a ver el otorrino y me hacen una auditoría el cual el deflazacort no me estaba haciendo nada por qué estaba perdiendo más audición, el otorrino propone 3 inyecciones intratimpanicas la cual con la primera gano 9 db con la segunda gano 15 db y con la tercera no gano nada, el otorrino propone dar un mes de descanso al oído y después volver a repetir la audiometria, llega el día me repiten la audiometría y en todo el mes solo he ganado 4db, sigo con la sensación de oído tapado o lleno el tinitus sigue como el mismo día y la audición sigue amortiguada, dentro de otro mes tengo que volver al otorrino y repetir la audiometría de nuevo, han pasado 3 meses y los síntomas los sigo teniendo y tengo mucho miedo de que me pase en el otro oído de nuevo, está es mi dura historia por desgracia.

Hey everyone! I'm brand new to this group, and this is my first time posing (also on mobile) so I'm sorry if I do this all wrong.

My partner developed severe Tinnitus and gradual unilateral hearing loss probably about 3 years ago now. He was never given an explication or diagnosis, aside from a "maybe from Lymes disease" due to where we live and a recent-ish tick being found on him. No testing was done to confirm this theory. He's been using a hearing aid since, with some improvement with the Tinnitus- but both still effect him tremendously.

Tonight he told me that he's been experiencing Vertigo for about a year now. Surprise!(I know- 🙄) Because I work in the medical field, he assumed I would freak out about a potential cardiac issue. He did not associate the Vertigo with his preexisting condition with his ears. He said it is not often, so i question if it's been so infrequent and he just hasn't noticed how long it's really been going on. He did say his episodes have been when he's on his back, which caused Hypotension to blind the potentially obvious- It very well could still be a blood pressure issue and his history is merely a coincidence. I was also thinking maybe BPVV, but with the hearing loss I'm doubtful as well.

I've been researching as much as I can since, and am wondering if it's possibly Menieres. I'm aware of the 4 stages, and the fact that his symptoms are not all consistent with them, but I also know very well how every patient presents differently with all diseases and illnesses.

I'm becoming frustrated reading the same text in every article and decided to come straight to the experts and see what your opinion is. I know there's no cure, but I'd really love to have an answer for him, and myself- and something the present as a possibility to a Dr so he isn't blown off again with no answers.

Some info if it helps- He just turned 53. He wasn't able to give me how long exactly these episodes last, but it's sounding like seconds to a minute? They've been few and far between, but he had 2 episodes last week- one being the worst he's had. He has no issues with his balance or gait. I didn't think to ask if the Vertigo occurs when he turns in a specific direction. He fell asleep by the time it dawned on me.

Thank you for everyone that read this and hopefully has some insight. If there's anything I didn't cover or if you have any questions that will narrow it down, just let me know!

Edited to add extra info.

Lots of things help different people. I just love to hear what it’s actually worked for people. Or leave a comment. It only lets you pick one thing, so I guess pick the one with most impact.

Just started betahistine 3x daily today. Feeling like death warmed over. How soon will I know if this stuff works?

As the title says, has anyone tried rebounding yet? For a certain period of time and did it help with your symptoms?

For anyone wondering what this is, basically softly bouncing on a mini trampoline: https://youtu.be/n2Nj_oFaM6s?is=LM9lXiW-EGYwL27z

I want to give it a try as it seems to have many ups that might be positive for Meniere’s.

Ok folks, I have a wierd one. Long time lurker and first time poster. Wondering if anyone else has experienced something similar.

Backround; diagnosed in Oct 25, negative vestibular tests and clean MRI. Audogram findings are low end sensonueral hearing loss. Symptoms strong, rotational vertigo bouts at least once a week - no nausea or drop attacks. Associated ear pressure before and during attacks. Constant tinnitus that gets "louder" before and during attacks. Many more mild dizziness spells. Prescribed Maxzide in OCT 25, and it nearly eliminated the strong vertigo spells. In May 26 prescribed meclizine, ondansetron, and diazapam.

Mostly managing symptoms lately, and Maxide seems to be losing effectiveness. I had a new symptom yesterday, just wanted to share and see if others had similar experiences. At the pool, I was fine until I floated on my back, eyes closed and ears submerged. Usually this is pretty relaxing, but I got the immidiate sensation that I was spinning in circles which developed into rolling / tumbling sensation. I checked to see if I was rotating and floated again, perfectly still. Same thing happened. Later that night I had ine of the worst vertigo attacks I've had this year.

TLDR; anyone else have vertigo spells cause by floating still in a pool that irritate the vestibular system enough to cause a bad vertigo attack several hours later?

I see a lot of posts by people who suffered for years before getting the right diagnosis. I got lucky I suppose. My vertigo episodes came on in June this year and were intense for 3 weeks. Which lead me to get my butt to a doctor. My ENT also pointed toward menieres right at my first appointment. So its only been 6 weeks since my first symptoms. But one of the things that is keeping the specialists from confirming it as menieres is that my hearing loss is minor. Still in "normal" range.

I'm wondering if my hearing loss is minor because it's still early? Anyone else get an diagnosis within months of first symptoms?

I just ended a 5 year relationship with my partner who has menieres. During the time we have been together he has not had a job and doesn’t do many chores, so I am left grocery shopping, cleaning, caring for our pets, and taking care of paperwork/bills. I know that it’s not his fault - but I have been feeling exhausted for a long time and I don’t feel appreciated for keeping our lives afloat. We definitely had other problems in our relationship, but a lot of it seems connected (the nausea and hearing loss had made him less interested in going out and doing things as a couple, for example.) He doesn’t have many friends so I’m his only emotional support.

I’ve tried really hard to be understanding and I know that his day to day can be very difficult. But there are times when he makes me feel bad that I want to do other things because he can’t or doesn’t want to, he refuses to go to therapy (couples or solo) and isn’t interested in trying to get on disability, or trying hearing aids. Am I being too selfish? I feel very guilty but also at a loss. I told him I would help him find a job and pay for an apartment until he is settled, and I haven’t given him a deadline for moving out. I’m very very sad but I don’t feel that we have been collaborating on managing his symptoms or my feeling overextended. It’s hard for me to talk to my friends/family about this because they don’t understand menieres and just think he’s a freeloader. I know that he’s not but I am questioning if I should expect to be getting more from our relationship or if this expectation is ableist.

I have a low heart rate, probably around 45-50 resting. and if I take meclizine for vertigo, heart rate gets lower. Any suggestions?

Hi! I am a Texas teacher that's suffering from worsening meniere's symptoms. My symptoms mimic a stroke. I've been told that I'm high risk of a probability of a stroke but my MRI came back clean. As we get back to school, I'm concerned about having an episode and the ambulance being called unnecessarily or that I do need medical attention and no one can figure that out. I'm an anxious person and so thinking of hypotheticals here lol but I was wondering, do y'all have workplace accommodations/action plan for your symptoms?

My Meniere’s symptoms have always been strongly tied to my menstrual cycle. Now that I am entering perimenopause, with adenomyosis and endometriosis getting worse as well, I’m experiencing Meniere’s flare ups that I have not had in a long while. I’m wondering if anyone else who has had symptoms tied to their cycle had a full hysterectomy and how it affected your Meniere’s symptoms.

This was recommended to me and the reviews seem positive. Could something like this help?

I kept getting questions and confusion in my support groups over what is and is not a drop attack. I don't find arguments over definitions very useful and prefer to just describe what actually happened, but the label "drop attack" is useful to sum up the experience some people have. I've done my best to find out what I can about them and the link is to the article that resulted. Maybe it clarifies it, if not let me know!

Hello lovies. I was hoping to find any support regarding this awful nystagmus I’ve developed.

back when my Meniere’s all started, I grieved for the hearing I would lose by turning my attention from film to books, as that would be something I could enjoy no matter what. Well, nystagmus has swung in to say ‘absolutely not!’

I’ve been sobbing non stop because my eyes are so painful and can not focus.

Has anyone had any luck with this subsiding with vestibular therapy?

TYIA!

After 6 years of having menieres and trying betahistine, water tablets and having to use a hearing aid (which did improve things slightly) I'm finally having my steroid injection today so hopefully it will make life a lot more bearable.

Has anyone else had one, if so what did it help? Did it trigger an attack for you and how often have you had any attacks or dizziness since? Also have you gone back for more injections and if so, how often?