r/Menieres

Assuming that's what I have. It seems like I do.

And this isn't to be negative. It's just to understand the syndrome.

For me it's that I don't feel like the person I was at all. It's like a zombie entered me and I'm only half alive. I still have the same desires for my life; they haven't changed. But I know I can't do them. I feel like I'm 85, nearing the end, in my body.

That and the pressure on my ear that never seems to let go of me.

I always wanted to be an entrepreneur and run my own business. I started three. All failed. 

I finally found early success with my fourth, and six weeks later, I was diagnosed with Menieres. 

I believe in God. I asked God “why now?.” I didn’t get an answer. 

I don’t know what Menieres is. I got diagnosed, but it was partially my suggestion. Maybe I don’t have it. It seems like I do. 

This thread is my attempt to learn if I have it, or something else, and whatever I do have, to learn how to manage it, and hopefully meet a few others who are struggling with the same thing. 

Here I am, early 40s, moved across the world to found a business, and I feel debilitated. 

Reading the struggles of others has left me both inspired and despairing. Despairing, because I’m already deaf in one ear. Ironically, it’s always been my goal to protect my good ear. I still enjoyed life, but I always tried to keep it from getting damaged. Reading how others’ on here have lost hearing, has, quite honestly, scared the shit out of me. 

I have been inspired by some, especially one post entitled “My Odyssey with Menieres” which I recommend everyone read, from about 4 years ago. I’m grateful to others who have shared their experiences, so I’ll do the same. 

I am an extremely active person. I play sports, I have a great social life, I love thinking about the future. Or rather, I did. 

I take the lead in whatever I do. I’m stubborn. I’m persistent. I’m skeptical of everything I read, and everything people say. I live by my experience. Whatever people may think, I have a fire inside me. It won’t hold me down. At least, that’s what I thought, until this happened to me. 

For the first time, since I was a young kid, I feel completely sick and vulnerable. I feel like how I imagine an 89 year old feels, nearing their end. 

Tell me this isn’t how it always is. 
Tell me it gets better with treatment, with time, with support from loving people. 

Thank you for reading. 

I plan to use this thread, if that is OK with moderators, to document what I find, in an attempt to treat myself and share what I learn with this lovely community. 

what is violent spinning vertigo for u

Hi everyone,

I'm in my 40s, and I'm going through something that's honestly been one of the most difficult experiences of my life. I'm hoping to share my story, get some advice from people who've experienced something similar, and maybe help someone else going through this. I wrote this with the help of AI as I am having a hard time focusing.

These days it feels like I'm on a drug, all the time. I feel drowsy, a little high, and have a hard time keeping my thoughts still. Almost every waking moment is focused on this feeling in my head. It's like pressure to the side of my head. Whereas I used to have many things I cared about, and wanted to do, now I don't. All I want to do is lie down, or sleep.

As for diet - in the past week I have completely cut caffeine. I used to drink 4 cups of coffee a day, now I am tapered down to 0 since yesterday. I don't take any other stimulants and for sodium, I have begun cooking all my own meals and I don't add any salt. This hasn't helped as much as I'd hoped. I take a daily multi vitamin.

A little background: I've been deaf in my right ear since I was a child due. My left ear has always been my good ear, so anything involving my hearing is especially frightening.

About six weeks ago, after taking a flight, I started experiencing fullness and pressure in my left ear, along with tinnitus. I also noticed some strange changes in how I perceived sound. Sometimes, while talking to people, their voices would suddenly sound distant or muffled, almost like I was temporarily losing some hearing. Other times, I'd experience a strange static-like sensation in my ear.

About 10 days after landing, I went to the emergency room because I was concerned about my hearing. I saw an ENT and was given a prednisone injection, followed by 20 mg prednisone tablets for about a week.

Interestingly, I felt significantly better while taking prednisone. Most of my symptoms seemed to improve, and I felt relatively normal again.

I also had an audiogram, which showed that my left ear still had normal hearing. That was reassuring, especially considering my history of hearing loss in my right ear.

After the prednisone treatment, the doctors essentially told me everything should be fine. I tried explaining that I was also experiencing occasional vertigo and dizziness, but they didn't seem particularly concerned. They suggested Dramamine and said it might simply be related to the airplane pressure and would eventually go away.

For the next several weeks, I continued having occasional dizziness, but it wasn't really interfering with my daily life.

Then, about two weeks ago, everything changed.

The dizziness became significantly worse and much more frequent.

I'm not even sure whether what I'm experiencing is technically vertigo. Sometimes it feels like I'm losing focus, becoming disoriented, or suddenly feeling extremely dizzy. There's also this persistent fullness or pressure sensation in my left ear that never seems to disappear completely.

Over the past two weeks, things have become genuinely debilitating.

I work a lot and have meetings daily.

But lately, I can barely function the way I used to.

It's difficult to concentrate, difficult to work, and sometimes difficult to get through ordinary daily activities. I feel constantly exhausted and mentally foggy. I've lost a lot of my usual motivation, not because I don't care about my business, but because I simply don't feel physically or mentally capable of operating at my normal level.

That's probably been one of the scariest parts of this whole experience.

I don't feel like myself anymore.

It's almost like the person I was two months ago has disappeared. I know that might sound dramatic, but the combination of dizziness, fatigue, brain fog, and uncertainty has been absolutely dreadful.

I'm currently living in a country with few resources, where I've had difficulty finding specialists who seem familiar with vestibular disorders. I feel like my concerns haven't been taken seriously, and I haven't been given a clear explanation for what's happening.

Out of frustration, I've started self-medicating with amitriptyline and recently tried betahistine. The amitriptyline seems to help a little, although I'm still experiencing considerable drowsiness, dizziness, and brain fog. I'm not sure how much of that is from the underlying condition versus medication side effects.

I've been reading about Ménière's disease, vestibular migraine, labyrinthitis, and other vestibular disorders, but I haven't received a confirmed diagnosis.

The possibility of losing hearing in my only functioning ear is especially terrifying.

One other major concern is an upcoming flight.

I have a flight back to the United States in about two weeks, where I plan to see a specialist who has more experience diagnosing and treating vestibular disorders.

However, I'm worried about getting on another airplane, especially since my symptoms initially started shortly after my last flight.

I've been reading about barometric pressure changes, Eustachian tube dysfunction, and possible inner-ear barotrauma. I'm concerned that the pressure changes during takeoff and landing could make my symptoms significantly worse or potentially cause further damage to my hearing.

Because I'm already deaf in my right ear, protecting my remaining hearing is incredibly important to me.

I'm particularly worried about the first leg of my journey. What happens if I experience severe vertigo, sudden hearing loss, or another serious episode while I'm in the air? Could flying in my current condition potentially create a medical emergency?

Has anyone here flown while experiencing active Ménière's symptoms, vestibular migraines, or unexplained inner-ear problems? Did the flight make your symptoms worse? Did your doctors recommend any precautions or advise you not to fly?

I really want to get back to the United States for better medical care, but I'm also afraid that the journey itself could make things worse.

For those of you who've experienced something similar, I have a few questions:

1. Does my experience sound familiar to anyone diagnosed with Ménière's disease or vestibular migraine, particularly the constant fullness, brain fog, and debilitating dizziness?
2. Did anyone experience normal results on an audiogram despite feeling like their hearing was fluctuating or sounds were becoming muffled?
3. Has anyone experienced this overwhelming fatigue, lack of motivation, and feeling like you're simply not yourself anymore? Did it eventually improve?
4. What tests or specialists would you recommend at this stage? Would you prioritize a neurotologist, neurologist, or vestibular testing?
5. Has anyone flown internationally while experiencing active vestibular symptoms? Is there anything you wish you'd known or done before flying?

I don't expect anyone here to diagnose me. I just want to understand what others have experienced and what steps helped them get answers.

I'm particularly interested in hearing from people who were initially debilitated by their symptoms but eventually found a way to manage them.

I'm usually a pretty optimistic, ambitious person, but these past two weeks have really shaken me. I've worked incredibly hard to build my business and create a life that I love, and suddenly I'm struggling to do things that used to come naturally.

If you've been through something similar, I'd genuinely appreciate hearing your story.

Thank you to anyone who takes the time to read this. I hope sharing my experience might also help someone else who feels as lost as I do right now.

Disclaimer: AI helped me with this post as I have trouble focusing, but this is my real experience and I revised it somewhat.

Hey everyone,

I’m 18 and was diagnosed with menieres a few months ago. My hearing fluctuates daily. Sometimes I cant hear a thing, sometimes I can hear almost perfectly fine.

All this to say, Ive been told by my specialist that I should consider hearing aids. Now let’s be honest, no 18 year old wants hearing aids…so I want to try some alternatives first.

Has anyone tried using AirPod 3 pros as a hearing aid / hearing assistant? If you have, do you feel like they help?

If anyone has any other alternative ideas for hearing aids, please let me know as I would like to avoid hearing aids until I’m older if possible.

Thanks in advance.

Has anybody tried using earplane ear plugs on days when barometric pressure is changing? For instance, when a hurricane is approaching.

I've seen a lot of posts here about flights and that eased my mind, however right when I got Menieres - the thing that probably triggered it- was a descent into a higher altitude city (3,000 meters, 10,000 feet). I am doing a similar flight in just a few weeks. I have to as it's a layover. I could change the flight but it's expensive, but maybe it's worth it? My biggest fear is that I experience hearing loss in my Meniere's ear, which is my only good ear, and have to run to get an emergency prednisone injection in a foreign country as this is international travel. Somehow I think the altitude plays a role here.

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.

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!!!

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.