Has anyone seen an Immunologist for this?

I am 100000% steroid dependent at this point and my biologic drug isn't working to get me off steroids. I can't even go lower than 35mg now. (Please don't lecture me about the danger of steroid use. Trust me, I know by now.)

I've heard that immunologists can help figure out where/why the inflammation is happening. I'm very curious if anyone has had any luck with one in the US. I'm willing to travel anywhere at this point - even outside the US.

Also, props to anyone who has been able to continue their life once their hearing has dropped significantly and they're STILL left with horrible tinnitus. I can't take more than 24 hours of it without seriously considering ending it all. Not to be grim on here, but this disease is hell and it just continues to take more and more away from the people who deal with it. I'm so sorry to all of you.

So do people take it temporarily when they feel symptoms coming on or do they take it all the time to help keep symptoms at bay? I’m confused.

Hi, I'm interested if there's anyone who had the injection in both ears

I have to travel for work in the coming weeks. Since I was diagnosed, I've been eating every single meal home cooked as I've noticed that high sodium is a trigger for me, leaving me in a state of vertigo for 24 hours or more. I'll be staying in hotels, on airplanes, etc, and won't have a kitchen in my hotel. Also as I'll be at events, there will be food there and I'll get hungry, obviously. Are there standard go-to restaurants with good and affordable options that you typically go to? This will be in the east coast and midwest of the USA by the way.

Thanks for any tips

I know this has come up before here, and there's a range of opinions but I thought I'd add my own data point.

I started NUCCA treatments a couple months ago and the improvement has been significant. Since I started, I have had only one day of dizzy spells (previously they were several times a week) and my general feeling of seasickness (nausea, headache etc) is substantially reduced.

Everyone's Meniere's is different so who knows if it will work for you. What's odd is previously I identified gluten as a strong trigger of vertigo and dizziness so I would not have thought alignment issues played a role. But maybe it was cumulative.

Hearing loss and tinnitus is unchanged, my guess is that its never going to go back. But getting rid of dizziness and unsteadiness is huge.

To users of WeatheRX ear plugs and its app,

how large a change in pressure causes you to use the ear plugs; and does the direction of change matter?

Tested my hearing today and my right ear declined 50% from my last test. We’ll retest in 6 weeks. If the hearing doesn’t rebound, we’ll talk about hearing aids. He’s also giving me a round of steroids and diuretics.

That’s all folks.

Does anyone else experience this? Any tips on getting sleep without additional drugs?

Today was my 25th shot. I get it every 6 weeks. This happens with every shot.

Has anyone tried peptides for their Ménière’s? Specifically their tinnitus? Anything actually work?

I’m going through the stages of being diagnosed with menieres, I’ve just been put on Betahistine, does this help?

I’m so scared, I’m a teacher and currently just unable to do my job and the thought I might be feeling like this long term makes me think I’m going to have to change career, I love my job and really don’t want to do this. But the vertigo in the classroom is just too risky. I’ve also been having episodes where I just drop to the floor because my legs just give way.

Any enlightening advice would be great.

US resident here. I've been buying betahistine from a Canadian online pharmacy, since it's much less $$ than buying from compounding pharmacies in the US. Now it looks like none of the Canadian pharmacies will process orders to the US due to the new international mail rules that start Oct. 22. Has anyone found an alternative to both US compounding pharmacies and Canadian pharmacies?

Love that the US gov't has decided a trade war with Canada is what we need....

Steroid shots are the only thing actually helping calm my symptoms for now. I‘ve been getting them every 2-3 weeks for a couple of months now.

Lately I noticed that a few days after every shot, the discomfort, pressure and Tinnitus in my bad ear move over to my good ear. Todays hearing test also showed the First Sign of hearing loss in my good ear, with diminished hearing in the high frequencies (which is weird because Meniere is supposed to affect rather low frequencies in the beginning, no??).

Anyway, did anyone experience something similar? Not sure how go on from here as I have pretty much tried everything. If you have advice I am happy to hear it.

Many thanks in advance for all the replies, I really appreciate it!

Hi, I’m coming here for abit of advice.

Over the past few years I have had on and off dizziness but have never had a vertigo attack to the point where I am vomitting etc.

About 2 years ago I woke up with room spin which subsided as I got up and went about my day, then 4 weeks ago I woke up to dizziness at 5am managed to go the bathroom get back in bed and go back to sleep which then also subsided.

I do sometimes feel off balance or dizzy but I do have good days too, sometimes thinking about it just makes it worse but in 2021 I had gone the doctors for dizziness and off balance for years so not sure if it comes down to something else or anxiety.

I sometimes get a headache feeling but in both of my ears, sometimes I have a burning feeling in them and sometimes it feels like pressure in both, they also can crunch abit when I swallow or yawn and sometimes get slight pain in them.

I feel more dizzy when I lie down and when I wake up which tends to get better throughout the day.

My GP has given me betahistine which is helping a little with the dizziness ( not vertigo ) only get this occasionally.

My GP has mentioned menieres and I am terrified after looking at all the negative debilitating stories.

Please could anyone help as I go away this weekend and I am terrified of having an attack or something bad happening and I am terrified of what is to come.

If you exercise (not referring to vestibular rehab- just regular body exercise) I’m curious as to how often you comfortably do it? And what realistic routine have you been following to the point where you can feel(and or see) yourself reaching your goals? It can be hard sometimes to get through an entire set without long breaks as I don’t want to trigger my symptoms. I’m curious to see what works for sufferers who also workout. Thanks!

I’ve been recently diagnosed with Menieres at 62. Never had hearing problems or tinnitus until 2 years ago. Started with severe vertigo attacks this year. I feel like my experience is a little different. I’ve been low salt and caffeine free since March and been on diuretics and betahistine since July. I can handle the other symptoms but the severe vertigo is really tough. A spell lasts at least an hour and I can’t move. I can only sit with my eyes closed until it subsides. I do have Valium for attacks but I only want to use it for real emergencies.

So my questions are, is there specific triggers or treatments for older people? Anyone older have specific ideas for managing this condition?

I realize that Im lucky since I’ve been healthy most of my life but this seems like it’s escalating quickly. I’m a gym rat and runner plus I travel frequently. I’m trying to navigate the rest of my life.

Has anyone else had problems following a tympanic tube placement?

I had mine put in on the 6th (6 days ago), and I keep having vertigo, ear fullness, and profound fatigue (caused by the tube, not a menieres flare). It’s driving me crazy!! I have had to miss 2.5 days of work because of it. Because of the ear fullness Im having trouble understand radio transmissions. This has caused a delay in my response time to incidents, which is incredibly frustrating. Is it normal to have these problems almost a week after the procedure?

Hi everyone, just wondering if this has happened to anyone else. A week ago I got my first steroid shot in my eardrum and the next day my tinnitus was much worse. I also have felt dizzier. I thought maybe it was because the eardrum was healing, but today I was supposed to get my second shot. I went in and had a hearing test and the test showed that my hearing was also worse. The doctor seemed perplexed as if he had never seen this before. He said that with a case like mine, usually the steroid shot works 100% of the time. He decided not to give me a second shot and has instead told me to start a low sodium diet and has prescribed me Triamterene-hctz 37.5-25. Has anyone else had this happen? And if so, what helped you?

Hello all,

This will be kinda long but I'll try to make it short. I need your help because for the past 10 years I've been having isssues and can't seem to figure out why with ENTs, although I think I know why but ENTs just dont believe me.
I'm 30 yo male. When I was 20, I had an ear infection inside my right ear. I was being stupid at the time and didn't visit a doctor until I got issues from it like dizziness. GP gave me eardrops but they didnt really help and at the end I had to take antibiotics. Shortly after, like after 5-6 months after having this ear infection, I started having episodes of extreme dizziness. This episode gave me symptoms like balance issues, head spinning, sweating and nausea. I had to sleep it off otherwise I wouldn't disappear. It also caused chronic fatigue, that I have till this day nonstop - my muscles felt and still feel very weak and fatigued and it affects my organs too, I don't feel like they're working at 100%. The first few years I've had reoccurring ear infections inside right ear and had to take antibiotics. Then I underwent multiple turbinate reduction surgeries (radiofrequency) and since then those reoccurring infections have stopped, but my symptoms didn't disappear.
I have issues with my right ear for these past 10 years now - occasional pain, popping sounds inside the right ear and if I pull it and/or open my mouth, it gets clogged until I close my mouth again.
Since then my turbinates are inflamed. Some ENTs told me it's non alergic rhinitis (tried dymista and antihistamines, doesn't much work), but I found it weird it developped after this ear infection, not before it. Some ENTs told me my eustachian tube is inflamed. I have constant feel off balance and dizziness episodes.
Pressure inside my right ear is sometimes measured to be normal, sometimes not (negative pressure).
When I fly, during take off my eyes go up and down and I have to pull my right ear to help it.

I think I have pressure issues inside my right ear due to the inflamed turbinates/eustachyan tube and I think a grommet inside my right ear would help a lot, but ENTs dont think I need it, so didn't find anyone who would be willing to put one inside my right ear.

Also, the one thing that makes my symptoms much worse is orgasm. If I have an orgasm, for the next few days I'm just super tired and my dizziness is worse.

Can anyone give me some advice, please?

Thank you

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.

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.

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.

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

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