I have a bit of an oddball question related to my Meniere's disease to ask that I'm hoping someone here can relate to.

This summer I've decided to learn to play the harmonica. I'm having a lot of fun with it, but have hit a point in my study where I need to learn how to bend notes. Bending notes on the harmonica involves breathing inward while positioning the back of the tongue towards the rear of the mouth in order tune the cavity of your mouth in such a way that it activates an additional reed in the instrument and pulls the pitch downward into a note that the harmonica cannot otherwise reach.

There's an interesting study showing MRI images of a harmonica player named David Barrett bending his notes: https://www.researchgate.net/publication/236664195_Real-time_magnetic_resonance_imaging_fo_the_upper_airways_during_harmonica_pitch_bends

I understand the technique well enough and can successfully hit my bends most of the time, however doing so causes a feeling of pressure in my sinuses and can even cause my ears to pop.

Practicing this technique for more than a minute or so often leaves me with a sense of dizziness like when I have a Meniere's attack, just without the nystagmus and spinning. It's a very similar sensation to the one I experience during extreme swings in barometric pressure. Just yesterday I spent about an hour practicing and was rewarded with imbalance and dizziness for the rest of the evening.

Are there any other harmonica players here with MD?

Have you ever experienced something like this before? I feel like the crossover population between people who play harmonica and people who have Meniere's is so small that I'm having trouble finding people who might be able to help.

I've mentioned this to my doctor and she just told me that it didn't sound dangerous but I may need to modulate my playing if I start feeling dizzy. Not super actionable stuff.

Anyways, here's hoping this lands with someone who's experienced a similar issue and can at least relate to what I'm trying to describe.

Cheers.

I suspect I’ve had celiac my whole life but only got diagnosed in adulthood. I suffered from chronic ear infections as a child as a result. (Among other things. My diagnosis as a child was unspecified auto-immune disease)

Just wondering if there is a correlation between the two! I wonder if celiac disease might cause alot more damage than we know.

I’ve had Menieres since I was 18 for nearly 20 years. Back in 2021 I had an Endolymphatic shunt placed as the vertigo had gotten out of control. It has controlled the vertigo extremely well but my hearing was very damaged after surgery. Little to no word recognition in that ear, I can’t tell where sound is coming from and it’s starting to affect my job. Hearing aids just make it sound louder but is indistinguishable. I have constant tinnitus. Has anyone had a cochlear implant placed to improve hearing and word recognition? Do the benefits outweigh the risks? Any advice or information on this would be extremely appreciated.

Ten years in with fewer drop attacks happening if stress remains manageable. Salt isn’t an issue unless extreme - think canned green bean casserole with a heaping of southern salt. Anyone else have the overlap and making this correlation. Sweat, though I don’t really sweat much, seems to keep my salt intolerance at bay.

Wanted to get an opinion here since no one has been able to help me. About 3 months ago I got very bad flu. With the flu I got very congested and clogged ears. That lasted about 3 weeks and then I was pretty much back to normal.

Fast forward around July 24th I did not get sick but started getting clogged ears again. I thought it was just a flare up. Went to 3 ENTs at different points in time and they all said ear drums look fine, there is no fluid they can see behind ear. Throat and nose look fine. Only note is I got a slight deviated septum in left nostril. They all said its eustachian tube dysfunction but it feels very different this time than how I am used to feeling clogged ears when I get sick.

Ita been 6 weeks and this hasn't gone away. I already tried nasal sprays, allergy meds that they prescribe, nasal rinses and nothing helps.

Upon research I think I might have cochlear hydrops. Maybe the ENTs are thinking its ETD when its menieres instead.

My symptoms:

Ear fullness 24/7

I can pop my ears and feel some relief but the fullness is still there

Muffled hearing that fluctuates worse days and a bit better days

Tinnitus (this I have had for years now but notice it more now)

When I yawn or swallow I hear loud crunching in my ears

One thing that I hate doing is when I eat or even drive in the car my ears instantly clog more and the Muffled sound worsens

Overall this feels different than ETD to me. Its odd ears will pop but the full sensation of ear fullness is still there.

Any ideas? Im desperate

Hey all, I just accepted a new job as a Mechanical Engineer for the power plant company I have worked at for 11 years. It is going to be about 30% travel, but at times, May be stuck at a plant in a hotel for about 20 days at a time. And on top of that, not much for restaurants or anything close to the plants to take lunches. What do you guys do to keep sodium content down while essentially living out of a hotel? I can meal prep when I get to the place, but dont feel like taking all kinds of stuff with me and dont want to keep buying containers or anything. What do you guys do for food for a quick bite?

How did you y'all get diagnosed with menieres? I did a vng and they found nothing. I am feeling a little defeated at this point. I have neck tension, constantly rubbing massaging it for some relief. I can't drive well with all the head movements. This has been 10 months of lingering symptoms after my first vertigo attack. The only thing that that had me feel normal.for a couple days was a massage... Vestibular therapy helped but not as much as the massage.

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I just got an mri of the cervical spine. To see if this could be causing my headaches/imbalance and LF hearing loss episodes.

Does anything about this look like it could be a cause? If not a possibile contributor?

Has anyone else gotten a cervical mri showing some abnormalities?

TECHNIQUE: Multiplanar, multi-sequential MRI of the cervical spine was obtained on a 3T scanner using a standard protocol.

COMPARISON: No prior cervical spine examination available for comparison.

FINDINGS:

OSSEOUS STRUCTURES: Vertebral body heights are preserved. No marrow edema or destructive marrow infiltrative process.

ALIGNMENT: Straightening of the cervical spine. No significant scoliosis. No spondylolisthesis.

SPINAL CORD: No abnormal cord signal.

POSTERIOR FOSSA/CERVICOMEDULLARY JUNCTION: Unremarkable.

NECK/PARASPINAL SOFT TISSUES: Unremarkable.

INCLUDED THORACIC SPINE: Unremarkable.

DISCS: Disc heights are maintained. Multilevel disc desiccation.

The following axial levels are imaged and detailed below:

C2-C3: Mild right foraminal stenosis secondary to uncovertebral hypertrophy. No spinal canal or left foraminal stenosis.

C3-C4: Moderate/severe right foraminal stenosis secondary to uncovertebral and facet hypertrophy. No spinal canal or left foraminal stenosis.

C4-C5: Moderate right foraminal stenosis secondary to uncovertebral and facet hypertrophy. No spinal canal or left foraminal stenosis.

C5-C6: Mild posterior disc bulge. No spinal canal or foraminal stenosis.

C6-C7: Mild posterior disc bulge. No spinal canal or foraminal stenosis.

C7-T1: No disc bulging or herniation. No spinal canal or foraminal stenosis.

IMPRESSION: MRI of the cervical spine demonstrates:

Multilevel cervical spondylosis, as described.

Straightening of the cervical spine may be seen with muscle spasm.

I (39M) have had Ménière's for about 8 years. During this same time I got two amazing boys (8 and 5 yo).

While the disease progressed, I find myself more and more bound to home. Energy is limited, so I've been focusing on the bare minimal: work (to keep a steady income) and family. After the pandemic changed how many companies operate, even work is mainly from my home with office days only every now and then.

I'm not living in my home country, but moved to my wife's country about 10 years ago, so I'm lacking a basic safety net and childhood friends. Making new friends has been hard, because I go out so little.

Meanwhile, my wife has been increasingly unhappy with our way of life. She struggles both with how unpredictable the disease is (she once got stranded in a foreign country with two kids after an ambulance had taken me to the hospital due to a violent attack, for instance) and with the dullness of our life. Over time, she has more and more been building a life of her own, leaving me with the kids most of the time, which puts an additional strain on me.

Then we decided to open our marriage and she's actively been building another relationship on the side. Now we're at a crossroads where she might actually leave me for good.

So here I am, a broken man, far from my home country, but with no way to move back there because of my kids. I used to be very confident, sporty, funny, great at learning new things and getting stuff done. This disease made me lose my belief in most of those things many years ago. Then I clung to at least being good at my job and being a great family man. But AI is threatening my job and my wife makes me reconsider how great a husband I really am. I still have the boys, fortunately, but a grown man cannot lean on those of course.

Sorry for the vent, just needed to get this off my chest. I'm starting therapy soon as well, hopefully that can help me out a bit.

Edit: I realise now that the concept of an open marriage is triggering to some people. That's alright. As some said, this is not the forum to discuss such topics, so I won't reply to that part of the comments.

Today, I suffered an attack that lasted 6 hours, and I'm just wondering about triggers.

I have a recurring full ear, but it hasn't developed into an attack for ages.

I've had an infection, so I've been taking betahistine plus antibiotics. Maybe the stress of illness brought it on or change of seasons sometimes does it.

I haven't been running for a couple of weeks as well, so maybe that's it. Running and sports really help keep it under control.

Reaching out for any similar experiences

From what I read a lot of it seems contraindicated. What have you had success with?!

Had a pretty brutal episode that started yesterday. During the worst of it I had severe hyperacusis and once the fullness and hyperacusis started to come down my tinnitus shot up and sounded like an extremely loud electronic hissing. I’m now at the point where fullness is completely gone, hearing has pretty much returned and hyperacusis is very mild but tinnitus is still pretty loud. Not as bad as it was but to the point where I have to walk around with a violet noise playing constantly. How long is this part likely to last? The fullness lasted roughly 12 hours and I’m now at almost 24 hours since onset. Should also mention I am sick at the moment. My usual episodes only last a few hours and this was the longest one I have ever had, I’m thinking it has to do with being sick on top of everything

I recently went on a work trip to NYC, something I've done a million times. The drive is about 2 hours and my Menieres has been under control enough where I can travel without much worry. But this trip was BAD. I ended up having a small spell on the road , feeling nauseous and dizzy, and quickly got off at a rest stop to fully relax, take a Zofran, and reasses. After some time i felt fine and finished my drive. The next day I had the worst attack -I could barely stand, my heart was racing and I couldn't stop vomiting. Since that day, the rest of my week up till now I've had anxiety about having attacks in public, which is worsening my symptoms, and everyday my ears feel full and hyper sensitive to sounds and even by too much wind passing by them. I'm going to make a new appt to my ENT, and my wife gave me a few of her Klonopin, which helped with anxiety. I'm worried I will get to a point where I will have to give up driving and travel all together. Being on planes is already a nightmare due to the pressure, and now motion sickness in general. I've noticed a decline in hearing in my most affected ear, and most days it feels almost sore and agitated by too much stimulation. The anxiety though is something I never accounted for, and how much worse it makes everything feel. Is anyone on Adavan or any other anti-anxiety meds? Have they helped curb some stress triggers that make your Menieres worse? It's something I might have to look into now...

Hey everyone. So I want to say 6th July for a whole week I had a case of ear pressure, sensitive hearing, and lightheaded feeling that whole week. Even when laying down I felt gross. My eyes even felt like their were numb or something hard to describe. It went away for a week and came back again. Then went away

I went to my ent with no symptoms but he said possibly Ménière's disease. But he wants to see if i have a 3rd episode before we figure management.

Only thing I been having the past 3 days in ear fullness in one ear that goes away sooner or later. It doesnt get worse. Can that sometimes signal to another attack happening at some point? Is there signs people picked up on themselves before one happened? Are there triggers?

It gives me anixety because I heard months can go on before another happens? I hate the waiting period to see if it happens. I rather just know if I have it or am in the clear.

Thanks everyone.

I think the hardest part from me about having an episode is the mental drainage afterwards like I’m just so mentally drained and kind of negative and not feeling like doing anything and not really wanting to do much. Venting :/

It was also the weirdest episode I’ve ever had and it was just things looked weird around me, and it wasn’t exactly spinning

Is it common for patients to maintain their hearing after 20 years after their first episode?

Or is it destined for patients to lose all their hearing after 20 years?

I just realized how hard it is to date with this disease.
Finding love, trying to be in commit romantic relationship with someone takes patience, trust, strength, prayer, communication, friendship, bond, love, respect, and intimacy, and all other qualities that make it work. It’s not for the weak-minded or weak-hearted. This disease will break you, but it will build your character if you let it.

I realized that you can’t share it with everyone. Some will take it as your weakness. And use it against you. Make you feel weak. Make you useless, unwanted, unworthy, womanless, defeated, defenseless, uncanny, weak, and most low self esteem. These people will use this and won’t help you. They will mock you, tease you, call you out your name. Make you feel ashamed that you have it, blame you, and post your episode on social media, like on TikTok when you are experiencing vertigo at its worst. When the room is spinning out of control, you can’t catch your breath, you are in excruciating pain, you are passing out cause you are so dizzy that you have no balance. Your eyes are bloodshot red, you're dehydrated, your iron is low, and you have a lack of oxygen to your brain. Instead of helping you breathe, they are recording your demise. You are having a seizure right in front of them all they can do is record for their social media accounts for clicks and views while you suffer.

I learned this lesson the hard way. But I also learned, it didn’t break me. It made me think about what I wanted I want in a true sense of relationship. Sorry, to bring religion into this. I don’t want to offend anyone. So, if I offend anyone, I apologize in advance, but at the same time I must be my unapologetic self. Cause, it’s what helped me get through the toughest time dealing with disease plus vertigo. That without Prayer and God I don’t think I could’ve made it this far.

I wish someday that I would meet the right man who will understand that disease doesn’t define me. Yes, it’s handicapped my mental and physical health. This disease doesn’t have a cure, I’ve learned to adapt, adjust, and grow with my limitations. I have desires to be loved and be married someday just like anyone else. I want to be seen for me and not my disease. Look, beyond it. See my beauty. I’m beautiful inside and out. I may be an awkward social butterfly. Give me a chance to prove that there is more to me than meets the eye. I think this post proves I'm a survivor and and I have faith. I fight and I believe in something.

Has anyone here also been diagnosed with NPH? And then developed Menieres? It was discovered that I had NPH 9normal pressure hydrocephalus) last year. I had brain surgery then a few months later developed Menieres. Has this happened to anyone else? The ent doesn’t think there is a correlation.
To clarify, I’ve had dizziness and balance issues for years, but not the deafness, which is now becoming a huge problem and very frequent. It’s so discouraging. I’m already 100% deaf in one ear (since early childhood) so I’m very worried about losing my hearing completely. Not to mention the extreme vertigo.
If you are near a Mayo Clinic has anyone gone there for treatment or just another opinion?
So glad this group exists. It’s a lonely disease to have.

I have hearing loss/tinnitus in my right ear, almost constant dizziness, and periodic vertigo attacks. My ENT thinks I have Menieres and started me on triamterene last week.

I didn’t notice any difference for the first 5 days and I was worried about the lightheadedness because my blood pressure is fine and I know water pills can lower it. Then today when I was taking the bus home from work, I got super dizzy, both ears started ringing, and I almost passed out. I got off the bus a few stops early to just sit on the ground until I felt okay to walk home.

Has anyone else had like almost fainting while on triamterene? It was like nothing I had ever experienced before (and I’ve gotten lightheaded on the bus when it’s hot out in the summer before so I don’t think it was just that).

Hey all, just for some background, I’m on the younger side (so they say) of Ménière’s. I was diagnosed at 28 after having 5 major spells in a few months span. Until this week, Ménière’s was an afterthought for me because my last spell was over 4 years ago. I’m just recovering from my 3rd major multiple hour spell in the past week. I do not currently have an ENT or any treatment at the moment and I’m so desperate to try to get seen ASAP. I’ve reached out to 4 ENT places in North Carolina and have not received a response from 3. The other says mid October is the first available appointment. I have a 2 year old daughter I drive around frequently. The idea of this happening while being on the road with her or with her alone in my care is haunting me.

Also now that the attacks are back I find myself having panic attacks when the slightest off balance feeling occurs. I almost feel like I’m developing PTSD or something.

All this to say, if anyone has any suggestions on how to manage this with no treatment (other than drug store meclazine) or of any ENT in the NC area that could see me quickly to try steroid shots or something, please let me know. My right ear has lost 50% hearing already and I’d happily lose it all if it meant no more of these vertigo spells. I feel for each and every one of you because unless you live it, you just don’t understand.

TL;DR: I’m freaking out because symptoms are back after a 4 year hiatus and I have no immediate treatment options and no ENT that can see me anytime soon. It’s affecting my job and home life.

When I first started having attacks 5 years ago I would have 1 or 2 attacks a year. Last year I had a bad flare up and was having a few a week for months. My attacks back then would leave me throwing up into a toilet for hours.

This year my attacks have been daily. 3 or 4 a day but only last 20 seconds and would leave me with dizziness for 30 minutes then back to normal.

Is this normal?

I was diagnosed a few months ago. I've got a new ENT who is trying to save my hearing. He put me on a 2 week course of systemic prednisone. While I was on prednisone, both of my ears felt a whole lot better (fullness & tinnitus nearly went away, hearing improved measurably). But as the prednisone was tapering off, everything went back to the way it was before. My doctor wants to try steroid injections next but I'm hesitant. It seems like the benefits will be just as transient as they were with the oral steroids. Is there any reason to believe I'll get a more durable benefit from steroid injections to the point where it's worth the risk / pain?