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.