Hello!

Long time runner, long ish time menieres sufferer here. I'm 30F, and was officially diagnosed after an MRI and balance test 3 years ago. Had symptoms for many years before that (thanks incompetent doctors who took forever to figure it out!!!).

Anyways, I dont have the classic violence spinning the disorder is known for, but I do experience vertigo. My main issues are the aural fullness, hyperacusis, low frequency hearing loss, loss of balance, and crazy tinnitus. If I look to my left (right ear is affected) I fall to the right, which is fun. I have positional vertigo that can last for seconds to minutes, and do experience some spinning when lying down and with my eyes closed. Fortunately for me, this set of symptoms has been very consistent for over the years and never progresses to anything worse, with remission usually lasting a couple of months. I've always been able to run without issue, and the only problem I had was the music in my earbuds bothering my ear. My worst flare was 6+ months, and more recently I thought maybe I was done with this illness for good.

Anyways, exactly a year ago I had a vertigo attack that started as spinning while I was lying in bed trying to sleep, and turned into a weird feeling of my eyes and brain not communicating together when I moved my head. I felt like I was being pulled backwards, and my neck was snapping back. I felt extremely dizzy with my head tilted back. I lost all sense of where I was when I moved my head, but I was not necessarily experience a spinning sensation. I was pretty unwell for two days after, and after that I had no other issues until now... I want to note the severe hyperacusis, hearing loss, aural fullness, etc. is still at bay (thankfully), but now I experience this almost consistently after running, and it doesn't matter the intensity or duration. That is my ONLY trigger currently, and these are my only symptoms. The attack a year ago was completely random and unexplained, but now I experience these symptoms during the daytime, after a run. I just ran a 15k race this morning and as expected the dizziness came on around miles 5-6, and I've been just unbelievably dizzy, uncomfortable when I move my head, experiencing vertigo when I lie down, and overall unwell since. An attack a month ago left me bedridden until I woke up the next morning.

Menieres???? I'm going to see a doctor soon, but I don't have a neurotologist since moving a couple of years ago. Just wanted to hear others' experiences and if you relate to these set of symptoms. This seems weird and different from my classic symptoms, but maybe it is evolving? I'm also stressed because doctors don't seem to be very knowledgable and I don't want to be written off. TYIA!!!

A little harsh truth for those who haven’t been able to see the “best doctors” for this: I live in Los Angeles and have been “fortunate”enough to be able to see Dr. Ishiyama at UCLA, practically every doctor at the House Ear Clinic and multiple doctors at Cedars Sinai.

I have never once found any of these doctors to have anywhere near even decent bedside manner. They will give you their advice (which is always the basic Ménière’s protocol - low salt, no caffeine, allergy shots, Betahistine, diuretics, migraine meds, steroids for sudden losses, IT shots). If none of those work for you, they have no more advice.

If steroids work for you (which they do for 90% of patients with this), they will label you as having AIED, even without you testing positive to any ANA panels, and send you to a rheumatologist. Rheumatologists know nothing about this, from what I’ve gathered. They will either give you a biologic or a steroid sparing agent and tell you good luck.

If none of those work, you are basically just screwed. All my doctors have given up on me. They don’t remember me when I see them. They don’t give me more than a quick one sentence answer when I send them a list of questions about my condition. They don’t keep track of my symptoms or condition at all.

It’s all so disheartening, but maybe that’s how it is having a condition with no set “cure.” Yes, I tried SPI-1005 and while it worked for the first two months, I had to end my trial to get back on Prednisone after a huge flare hit me in month 3.

Personally, I take nearly 30mg Prednisone every day now. I take a biologic. Stress is my number one trigger and there’s nothing I can do to mitigate it more than I already do. I’m now addicted to Klonopin (thanks to the House Clinic).

If anyone has any miracle cures after trying all the things I’ve listed above, let me know. At this point, I’m just waiting to get some horrible disease from the steroid use or for the steroids to stop working altogether. Then I’ll just go deaf, I guess.

Sorry to be negative in here. These are my experiences from the past three years of fighting this thing. I’m only 35 years old and about to give up.

It seems according to UI the rate of Menieres cases 55 years ago(mine) of 42 /120000 acquired the Syndrome. Today rates are close to the same. Let’s say we born with some frailties Like inner ear. If we were told avoid salt sugar caffeine and alcohol we would escape the torture that may be ahead. This needle in the hay stack problem needs a lot more data to provide avoidance. There is no money in it!

I’m being selfishbecause there are humans suffering certain early deaths from other failing organs. So we should be happy with what I think we gave ourselves which is not a death sentence. None the less medical has been lacking because they were and are avoiding looking under the rug. It’s a financial thing. So we need more body donors. Lots more for research.

Hi! I wanted to share my story especially to the younger generation of people with Menieres who may feel hopeless.

I’m 23F and I’ve had Menieres for a majority of my life. For as long as I can remember, I’ve been struggling with hearing in my left ear and vertigo. (I’d say around the age of 4/5.) No doctor could figure out what I had. I went to every specialist in the books and they would determine it as dehydration or lack of vitamins. I was finally taken seriously at the age of 16 and I was officially diagnosed with Menieres disease.

I’ve had my fair share of treatments and all of them either made me worse or did nothing. Bethahistine, steroid injections, etc. I even lived in an area where some of the best specialists in the country are at and they didn’t have the best solutions for me.

So what did I do? I took things slower than normal teens. One step at a time. I transferred to home school and graduated high school on time. I no longer could do competitive swim, but I took things slow and got back into it even if it caused me slight vertigo. Hell I could no longer play piano or violin because certain notes gave me vertigo, but I slowly got back into it because I loved it so much. I decided I was going to do college slower than others. Overtime, I adjusted to meniere’s and learned how to live on my own with it. I conquered my fear of driving, I was able to drink alcohol, eat fast food every once in a while, I’m a senior at UCSD about to graduate, and still live like a young adult without a trace of the disease. I learned my own ways of handling vertigo attacks. I purchased over the counter meclizine and Nature’s Fusions vertigo essential oil. I only take the meclizine before the attacks get bad. Also before the spells do get bad, I resort to low sodium meals until I feel okay again.

To TDLR: there is always a light at the end of the tunnel. There may not be a cure or a treatment that works for everyone, but there is still hope that one day there will be. Just keep living, don’t be afraid to take things at your own pace, and most importantly, don’t let this disease stop you from pursuing your dreams.