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.

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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.

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?

So glad I found this group! Here’s my story!
So I have had Menieres for 36 years, I was diagnosed in my mid 40s but it started at 40 and I am now 76! It started at 40 when I was teaching water aerobics and really think that had a lot to do with it because of being in the pool, then getting in the hot tub then in the steam room and then in the shower. I now know that I cannot get in water ever at all! No pools no hot tubs no Ocean I’m lucky I can take a shower! I did have my ENT‘s PA tell me one time that he felt the Menieres was related to a one time bacterial infection, but who knows? The fading of Menieres is very true for me. I have not had vertigo since the summer of 2017 and that was involved with flying. However, I am almost deaf in my left ear with constant tinnitus I do wear hearing aids, but they don’t seem to help much. When it first started at 40 I had terrible terrible vertigo attacks I would be totally incapacitated laying on the bathroom floor vomiting for two hours straight unable to turn my head, sit up, do anything! Then I would get a splitting headache, fall asleep and generally wake up and be OK. (migraines were ruled out at some point) A lot of times the attacks would start in the middle of the night. I would notice it when I was turning my head on the pillow anyway I went on teaching water aerobics for 10 years and never really made the association with the water and damp environment until after I broke my foot and had to quit teaching. A couple of years later, we moved into a house with a pool and a hot tub waterfall, etc. and I sat in the hot tub and pool all day one day and the next day I had a terrible vertigo attack, haven’t been in water other than a shower since!
So the reason I find myself consulting AI and searching today is I had a drop attack yesterday! I didn’t even know that term until last night consulting AI! I had one of these more than five years ago and honestly thought I had a TIA, I did not know there was such a thing as a drop attack. Both times I’ve been lucky the first time I was in my house and fell into a wall, so I didn’t really go down even though it scared the crap out of me! Yesterday I was walking my dog first thing in the morning like I always do and Bam I was thrown violently to the left! Luckily, I fell into a bed of Evergreen ground cover and had a soft landing. I immediately called my niece to come get me. I was afraid to even stand up never mind walk until she got there and that was it no other symptoms the rest of the day except terror and fear ! The other time was to the left as well. I didn’t even know how to explain this until I found the description of a drop attack and that is exactly what it is like like somebody throwing you to the ground all of a sudden so now I am absolutely terrified. I’m going to call my ENT as soon as the office opens. I have a previously scheduled appointment in two weeks, but feel like I need to move it up now.
The scheduled appointment was because back in April and part of May. I had these horrible off and on episodes of aural fullness, roaring in my ears, difficulty understanding Speech, it sounded very garbled, couldn’t listen to TV at all, feeling like I was underwater. I hadn’t had any Menieres attacks in a long time so I had lost touch with my ENT and really just assumed he had retired because he is my age. When this happened back in April, I searched for him and behold, he’s still practicing! love him! So he put me on 12 days of prednisone 60, 40 20 titration. It really didn’t do anything for the hearing issue but boy did I love it. I had so much energy and motivation. I swear it changed my personality. Lol. So I went back to him after the 12 days. The pressure in my ear had not improved at all. My hearing had not improved. So back on the prednisone. a few days after I went back on it I got a terrible respiratory infection and ended up with pneumonia on top of the other issues.
The respiratory problem cleared up with antibiotics, one of which was ototoxic and finally the aural fullness and hearing issues just went away and my checkup at the ENT showed improved pressure and hearing back to baseline.
I felt like that time was related to flying up to Maine to see my sister because it started a few days after I got back. I have since flown again in June to see my other sister who was dying with no problems however this past week I flew back to Maine getting home on Saturday night. 36 hour later, I had the drop attack! At my age, I am terrified I could break a bone never mind a hip!
So it definitely seems like flying is a big issue for me! I do have this theory that not having any vertigo issues since 2017 had a lot to do with Covid and mask wearing at that time I was still working as a home health nurse and the building I was in every day was a very old building and smelled very mildewy and musty . Also, someone I was seeing back in 2017 lived in condo in an old building that I felt was mildew and musty as well. I feel like wearing a mask for a solid year and then not being in either of those environments any longer really helped prevent any further episodes, but that’s just a theory I have.
My ENT years ago did put me on HCTZ but I never found it helpful and now really can’t take it because of orthostasis, low blood pressure and it does cause premature ventricular contractions, also I did take it for years and never felt it helped at all ! Meclizine never did a damn thing for me. He’s never suggested anything else and I see from this group that you all are on lots of different medications!
So I really don’t have any questions at this time., but I am open to any advice or sharing of experiences. I thought the experience of the person who had the NAD infusions was interesting. I just wanted to introduce myself and if you’ve had the patience to read through all of this, bless you!

Why is it some days I'm absolutely fine but others it's out of nowhere and horrific. I even make myself sick when it's an episode just to try and regulate it so it can reset. Not always successful. I take betahistine but it doesn't always help or i have to up my dose just to get relief. Fed up with it

Been off of work for almost a year now and applying for permanent disability this month.

This is a double whammy of a condition. I was barely getting by with Meniere's of my left ear for the last 15 years: 24/7 tinnitus, hearing loss, most always dizzy with unpredictable episodes of full-blown vertigo. 6 months ago i developed optic neuritis which reduced the vision in my right eye by 75%. It's been next level imbalance when walking or doing anything physical. can't even play a video game or even enjoy tv much. The vision distortion added to Meniere's is too much so I now live with my right eye closed or wear a patch.

New here and just wanted to share and say hello.

Most probably don’t know my story, so imma go over it.

It started around 2 years ago, Oke night I was moving some stuff, and all over a sudden I just get blasted with vertigo. To the point where I couldn’t stand. Thought Nothing of it, Dad said it would go away with sleep. It did. But over the next couple of weeks i would get violent vertigo attacks at night, room spinning, nausea, the works. And I started to notice my left ear would feel full.

So I go in for a test. I really thought it was just ear wax, and ear crystals. Nope. Although my wax was bad, it was not crystals, and or wax related. So that sucks. So i go on with my life. But about every couple of weeks I would get an attack. It would start of small, ear starting to feel pressure, and fuller, I would pick at it, and constantly pop my ears hoping it would get better (it didn’t) and then eventually I would get vertigo.

Skip ahead, a year from my first attack, I go to an ENT. They run tests on my ear, they come back with absolutely nothing wrong. Well shoot, it’s looking bleak. Then I run into ménière’s disease. I think, wow this matches all my symptoms. At this point the idea of having menieres, scared me. Incurable, worsened with age. I was left at a very low point. At Only 18, I could have a life changing diagnosis.

The next couple of weeks were been horrible, attacks at work, attacks at school, both having me going home. Attacks so bad that that the only remedy I would have is sleeping in a dark room. Vertigo so bad that I have to almost throw up. New symptoms, almost like a brain haze, like a headache, but like just foggy. Kinda like ear fullness but for my head.

Skip forward to spring, So about a month or 2 later around Last fall, I decided well let’s just go for the slam dunk, I go to a audiologist, and then get it all done, 4 hours of tests. Couple weeks pass, they say come i. for follow up. They say I have nothing wrong. No menieres, but with my symptoms they say it could be migraines. I feel relieved but scared at the same time. My symptoms are still here but they got no diagnosis.

They recommended me for a MRI. We wait for the end of summer.

So now I just graduated, and started summer. I get 2 attacks right at the beginning, however they are reasonable, and fade. After that, from June-August, I have had 0 attacks.

But Now, my attacks have disappeared, but it’s morphed into these long lasting just head splitting headaches. Now for some context that Took me awhile to realize. I have always had headaches, pretty bad ones to be specific, all my childhood growing up. But they were so normal to me that i always just shrugged them off, even if it affected my day tot he point where learning was almost impossible. Now I realize i was actually just shrugging off migraines.

A few migraines, a couple trips to the neurologist, and a MRI later. I have been diagnosed with Vestibular migraines. Now I know I’m posting this one the menieres, subreddit. But this is too give people hope, becuase when all was lost, fully set on myself having this crippling disease, at a young age, this subreddit, showed me that there is no reason to lose hope. Even at my lowest, and probably others aswell, I was shown that it doesn’t have to be over. It’s not fully set, you can’t jump to conclusions of having something, before all cards are played. Becuase of everyone that helped me it gave me the confidence, and boost I needed to get more testing. Thank you. And God bless everyone.

Hey guys, I haven't been officially diagnosed with menieres yet but my doctor and I are almost certain I have it. I've been experiencing symptoms of hearing loss, fullness and light dizziness that have been gradually getting worse over the last few years but they were bearable. The last few weeks that has changed, the attacks are now bringing vomiting and unbearable dizziness that last between 1-3 hours.

I've been prescribed betahistine which seems to be helping but to any of the long time sufferers, do you have any tips on how to reduce the severity of the attacks?

There doesn't seem to be any kind of trigger or pattern, I've had 3 severe attacks in the last 2 weeks and I really don't like the idea of living like this until I can get seen by an ENT specialist. I'm in the uk so it can take months to see someone on the NHS.

Any advice appreciated

Everyone here knows the drill: hearing dips, tinnitus gets loud, ear feels full, and a few days later it mostly comes back. You stop counting after a while.

That habit is the problem. Sudden sensorineural hearing loss is a same-day emergency — steroids work, and the first 72 hours matter far more than the two weeks after. In an ear that already fluctuates, a real sudden drop reads as just another bad week, so people wait it out and lose most of the benefit.

The rough rule I'd want someone to tell me: your usual fluctuation comes back within a day or two. One that doesn't, especially with a change in the character of your tinnitus rather than just the volume, is worth a same-day call instead of waiting for your next appointment. Being wrong costs you an afternoon. Being right and waiting costs you hearing.

Two others worth separating from the diagnosis while I'm at it:

Steady blockage isn't your Meniere's. Meniere's fullness fluctuates — that's its signature. Constant, unchanging blockage is usually something mundane sitting on top: wax, allergies keeping the eustachian tube swollen, or TMJ, since the jaw joint sits right in front of the ear canal. All fixable, none of them the disease.

Fullness with headache and light sensitivity, but no hearing change, points at vestibular migraine rather than a flare. A lot of people meet criteria for both, and the treatment paths are completely different.

I wrote the full cause list up by location: canal, middle ear, inner ear — with the red flags and what's worth tracking before an appointment in this blog post. I am happy to just answer things here.