I think through online searching I have possibly found the cause of three very unusual symptoms that doctors either don't understand or sort of blow off. Some background i have had tinnitus for about the past 30 years and have been to an ENT in the past and have fairly significant hearing loss.

1. If I am quickly scrolling a spreadsheet or message board on my phone or computer I will out of nowhere get a 1-2 second compete loss of balance. Feels like my head and body are falling but it's not it's just all inside of my head.

2. Sometimes when it quiet in my house the furnace or ac will turn on loudly and then it will trigger me completely losing my hearing for like 5 seconds followed by a day of loud ear ringing which then goes back to it's usual low hum.

3. When walking i just miss a step and almost trip and then it's back to normal.

The doctors say the first is possible but just not to scroll and seem confused by the second and third.

I know a lot of you probably have much more serious cases but I would love after years to possibly get a handle on what is happening with me and have an actual explanation. Anyone ever experience #2?

So I attended a new ENT today (my old one has retired). I’ve had suspected Meniere’s for about 11 years.

The new ENT ordered a hearing test which found no sensorineural hearing loss (plenty of conductive hearing loss). He’s ruling out Meniere’s on this basis. Is this not a bit hasty?

Does anyone else here have a confirmed MD diagnosis without sensorineural loss? How accurate are these machines ?

Thanks so much in advance !

Hello everyone! Just wondering what is everyone's ear fullness like - does it come and go or is it always there?

Ever since a back to back sinus infection and Pneumonia in October, I've been having all sorts of issues with my left ear, from Tinnitus, to it constantly feeling clogged, and me feeling off balance. I unfortunately do not have insurance, and have been using some sort of community care to go to the ER, where I've seen several different doctors who have all said something different, but they all have said my left ear has a lot of fluid build up. My most recent visit was the most informative, and the doctor told me that it's likely due to the fact that I had those two ailments back to back, and that whatever is going around this winter has been incredibly nasty and taking longer to recover from. She prescribed me Flonase for my Eustachian tubes, and said to try that for a month, and if it doesn't work, to see an ENT for further testing. This is where I get confused, because since taking the Flonase, I have noticed that my ear doesn't feel as clogged, and that the tinnitus hasn't been as BAD.....at times. I made the mistake of googling my symptoms and stumbling upon Meniere's Disease, which I'm unsure if I should spend the time, and the money I don't have, to see an ENT for, since a lot of the symptoms I have (tinnitus, headaches, occasional dizziness) could be the symptoms of other issues I have such as high blood pressure, and prediabetes. I've seen people talk about attacks where the tinnitus and dizziness were brought on by eating high sodium foods, and what not, and while I've noticed at times I definitely feel off after eating foods high in sodium, or sugar, it seems as though I really only feel my worst when I'm in the cold for too long(such as outside), or if I lay down with my left ear to my pillow. Ive become incredibly hyper aware about my hearing, and haven't noticed any hearing loss. Even with the tinnitus, I can still hear over it.

So I'm just wondering what the best thing to do would be. Continue with the Flonase for a few more weeks to see if that helps, or just break the bank to see an ENT for testing. I know hearing loss is serious, and needs to be addressed ASAP which is another reason idk what to do.

Sorry if this post was all over the place. I was kind of frantic. 😅

Hello!

I’m not yet diagnosed (working on it), but i have had vertigo attacks for almost two years now. It was more frequent in the beginning, but it still happens every now and then. I have also very loud, objective tinnitus (‘clicking’ sounds), which can be heard by people next to me as well. The tinnitus is constant, but gets worse the more stressed i get. Sometimes, I lose hearing in one ear. This happens when i’m tired, stressed, and when i’m in a noisy environment. Does this sound like menières? I have had a CT scan done, nothing was found.

Hi,

So I was diagnosed around July with having Ménière’s. I had Covid in February and afterwards my ear was really full for a couple of weeks and it eventually lessened. Around May, I had my first vertigo attack (HELL) and continued to have them multiple times a week for month until I was able to see an ENT. They lasted 4-6 hours every single time and I was at the end of my rope.

During this time span, I had ear fullness and essentially what would happen is I would have the muffled hearing and tinnitus in my left ear, and if I moved my head to a certain position occasionally the fullness and muffled hearing would go away and I could feel it sort of “draining” out. That’s when the vertigo would kick in.

ENT prescribed Dyazide and I’m up to a tablet and a half a day and I haven’t had full blown vertigo or ear fullness since ~August (knock on wood, I don’t like mentioning this out loud).

I still get intermittent tinnitus and I just notice tonight that I was able to crack my jaw pretty hard and the tinnitus in my ear went from a 7 to a 1. I had a pretty bad underbite when I was younger and had to wear headgear and was eventually going to get surgery but it the underbite was so minimal at that point that I decided against it, but my jaw has always clicked and popped, sometimes pretty hard.

I’m just sitting here wondering if my jaw issues could be linked and this may be a TMJ issue or if there is a commodity with TMJ and Ménière’s?

Ménière’s disease DOES run in my family but I feel as if Ménière’s is a pretty sloppy diagnosis and it should be referred to as a syndrome because it seems like it is used more as a “blanket” diagnosis if anything. My father has it, and my grandfather had it. For whatever reason my grandfather would do the Epley maneuver and it definitely helped his symptoms, it does NOTHING for my father and for me it made it much worse, I actually ended up in the ER the last time I tried it (lol).

I vaguely remember having milder vertigo several times in my life but it was ALWAYS after I would clean my ear out with a q-tip. My hearing would be muffled for a couple days and then seemingly out of nowhere it felt like there was fluid draining out of my ear, almost like if you just came out of a pool or the shower and that’s when the vertigo would hit.

I also had inner ear pain initially when this was occurring and occasionally there was greenish discharge that would come out of my ear, it definitely did not look like earwax and it always made me wonder if it could be a Eustachian tube issue or something else?

Any stretches (for the Neck or other body part) that you have found helps either during an episode or as a preventative stretch?

Background: I had severe intermittent vertigo attacks (no vomiting or brain fog) several years ago, and an ENT told me I had Menieres and to watch my sodium intake. That worked for a while until I got COVID-19, which sent me into a tailspin and increased the frequency and severity of the vertigo attacks (along with full ear, ringing, vomiting, dry heaves, and accompanying severe brain fog after an attack).

I refused to go back to the same ENT, so my primary got me in to see an older ENT with some vertigo experience. He did several tests, including contrast MRI, and concluded I suffered from Vestibular Migraines. He referred me to a neurologist. Well, I am beyond frustrated with the Neurologist. He insists I MUST be suffering from migraines and ignores any other symptoms. It's like throwing a dart at a board. He keeps trying new medications in the hopes that something will help with my "migraines". The only med from the neuro that has helped is taking Sumatriptan during or after an attack. It seems to help significantly with the brain fog.

Well, today, the nero decided I should stop taking the Sumtriptan and start Emgality. According to him, the specialty pharmacist, and the drug maker's website, there are no side effects. However, I'm seeing otherwise from individuals who have posted online.

Since this is an injectable, I'm committed to the drug until it works its way out of my body.

So, I'm asking if anyone has taken this drug. Did it help? Did you have side effects you find aren't manageable? Did it decrease or increase your vertigo issues?

I did manage to get my primary doctor to prescribe Betahistine (I'm in the US), and it definitely has helped with full ear and vertigo, but it does give me headaches, and I'm 3 months in on that one (my Neurologist knows I'm taking it).

ANY feedback anyone may have is greatly appreciated.

Hi all, I have been diagnosed with Meniere’s Disease recently. I’ve been having attacks since end of August, every few weeks at first, and getting more frequent lately.

I have started to use 3x 24 mg betahistin but have switched to Acyclovir 3x 800mg daily as it might help if there’s a history with herpes.

Unfortunately I don’t feel well since end of September even between attacks. I often feel weak with no energy. And I also have issues with my stomach, possibly a gastritis. I’m taking 2x 40mg Esomeprazol (stomach acid blocker) daily.

Are these symptoms typical for MM? Stomach issues may also be from cortisone that I was given at the hospital after the first attacks.

I wish I would be able to pursue sports to keep fit. I’m still able to ride my bike on short distances or go for a walk but not more.

Sometimes I’m getting dizzy from watching TV for 1-2 hours or scrolling on the mobile, and it will take several hours to get better.

I haven’t been able to work much lately though I can work from home.

Every advice to improve my situation would be welcome!

Hello! I cut my diuretic in half for the past week to see if salt really is a trigger. Slowly but surely nothing has happened. (I have bladder pain that’s why I am weaning off of it)

My doctor is aware of me cutting back on the diuretic. She advised to go low salt and take it seriously but I am stubborn 😂 I had food truck chicken and fries last night to test the waters and so far I am fine. I will keep at this and then wean down to nothing is my goal. Unless I get vertigo then I’m right back on it.

I really don’t think salt is a trigger for me. I am hoping it’s not because I am having the bladder pain (adenomyosis ) and don’t want to put any more pressure down there.

Hello. I will start with my background information. I have had severe vertigo since I was 17 and started experiencing hearing loss and tinnitus shortly after that. I have hearing loss in both ears and use hearing aids. I was diagnosed for Meniere's in 2019 I am currently 25. I have been off medication for 1 year because my ENT said I am stable and my vertigo does not bother me for long periods of time regularly anymore. Just get a little here and there but not for weeks or months like before (yay).

So I have had really bad headaches and light sensitivity for years. I used to love reading as a child but when I started Uni I only read for school work and now I only read at my job (teacher). The words get all squiggly on the page, I often read things wrong or skip letters on first glance. My vision will also start to double and I feel like I have to concentrate super hard to properly read anything. I also have ADHD (diagnosed last May) and I can drive but I can't drive at night or when it is too dark (which makes our Canadian winters rough) because of the bright lights, anxiety, dizziness and nausea. While riding as a passenger I get extremely carsick. I feel like I always have to focus my eyes to see clearly with my glasses (I am nearsighted).

My optometrist suspected I might have BVD so I was sent to a vision therapy clinic earlier this month. They asked a bunch of questions and tested to see my eye-tracking, reading comprehension, and vision reaction. I wrote about it in my journal that day and drew what I remember seeing of my eye-tracking results.

From what they showed me it seems my right eye doesn't really follow things as well or as closely as my left eye.

Yesterday I did my follow-up tests with her and she basically explained that she is going to give me reading glasses to see if that helps alleviate my headaches and eyestrain. Also my main prescription is changing a tad bit so I can see clearer with my regular glasses. She said that because I have an inner ear condition it is hard to tell if my symptoms are caused by that or my eyes not teaming properly. In 4 months time if the reading glasses do not completely alleviate the symptoms then she said next step is vision therapy. The only problem is she says that although we can train the brain and eyes because of my condition there is not a guarantee on how much improvement I would see since my inner ear also plays a role in all of this. She also said the last resort is prism glasses or tinted glasses.

I truly hope the reading glasses will help me and improve my quality of life but I am worried I might need vision therapy because I have been dealing with this for so long.

Does anyone else with Meniere's have experience with eye tracking issues or vision therapy? Did it help?

Any insight or advice would be greatly appreciated. Thank you!

I’ve been on betahistine 16mg x 3 times daily since August and I’m unsure on whether it’s helping or not.

Sometimes I think it’s shortened the length of attacks down from 4-5 hours at a time to maybe 1 or 2. Yet other times I feel like despite them being shorter I’m having more of them with less time to recover in between. I’m currently in a month long cluster of several daily episodes, they last maybe 2-3 hours I spend 3 hours or so trying to recover and get back to normal only to then have another and repeat. I had a similar cluster throughout November and then back to around 4 episodes a week in December.

I’m seeing my ENT in a few weeks and obviously they’re going to ask me if I think the meds are helping but I’m conflicted on if they are or not. Should I just explain that? I’m not sure exactly how much it should have helped.

First attack was after a sinus infection. Ears ringing and violent vertigo. My doctor said Ménière’s, there’s nothing we can do for this. It took 9 month’s wait to see ENT. Hearing loss, probably Ménière’s he confirmed. I developed more triggers in the year to my follow up appointment this past December and more moderate hearing loss at repeat testing. A hearing aid will help. ENT, I think this is vestibular migraines. Uhm what?!? You need to figure out what is going on here. I can’t go for another 21 months of we don’t know what this is. Hell’s this? Ive been in a very dark place. Vestibular testing ordered, having 2-3 attacks a day in the meantime. Testing done, vision abnormalities and no issues with my ear. Results points to vestibular migraine. I have a history of ocular migraine so they track together.

Ok guys, I need your help. I really want to resolve this thing once and for all.

I have been only to ENTs. I had testing done with no resolution I can recall years ago, but as far as I know most of my records are missing.

It’s been 1.5 year since symptoms came back and I’m just being shoved from ENT to ENT

I can see many have been diagnosed, given diuretics, or have the condition monitored. What was the process you went through? Was there more testing than just one MRI? Was it a diagnosis of exclusion? How did you come to manage it ( for the ones who got control of the symptoms) and did doctors actually help at all

It looks like I’m rather quickly losing my left ear, and I want to save it

Have you guys had no problems with the most common triggers (eg. Caffeine, Salt, Alcohol, etc..) .

I’ve been diagnosed with menieres for about 5 years now and still none of those big triggers do anything for me.

Just wanted to know your guys perspective.

Hi, currently at my office cubicle and i feel the familiar sensation of vertigo, not enough to make me fall but enough for me to take it slow. Besides Mezclizine, how do you manage in situations like this?

I was hoping for some community advice about good hearing aids for someone that has a lot of sound stimulus at their job. I teach first grade and don’t know where to start with finding a hearing aid that will work best in this environment. I only need one hearing aid and my insurance is paying for 2100. I’m okay with paying some out of pocket if it will help me get through the days better. Thank you in advance for your opinions! ♥️🙏🏼

Our ENT said that tinnitus in MD is classically described as a low pitched "roaring" tinnitus, as compared to the high pitched ringing ones in noised induced hearing loss. Please share your experiences below :)

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Hello everyone, this is my first post in here. I just wanted to ask you how did you learn to live with tinnitus? Currently, mine is so loud that it doesn't allow me to be in silent environments, let alone sleep. It has been really hard to sleep the last few days, the sound never stops, and I live in a small town, where it is not always possible to get specialized professional help. I got diagnosed with MD 5 months ago, and, since then, I have been taking betahistine and am on a very low sodium diet.

Ugh, my posts keep getting deleted. Try a radiation protection cover for your phone. It’s the only thing that helped me. It takes about 10 weeks for the radiation to leave your body (that was my time period, but I’m within 1 mile of a 5G tower), regardless, give it a try. Our medical institutions, in my opinion, have become businesses that want repeat customers by keeping us unhealthy!

So, on NYE day I was feeling a little brain foggy and slightly disconnected from my senses but was fine otherwise. We went out for pizza and I enjoyed several slices of delicious, salty, wonderful pizza. Later that evening I noticed when I moved my eyeballs all the way to right I had slight nystagmus. (My bad ear is my left and vertigo always goes right to left) the nystagmus was pulling my eyes to the left a bit.

Oddly enough I didn’t have ear fullness or loud tinnitus (my normal warning signs). The next morning I awoke to mild vertigo that only lasted about 20 minutes. That is strange for me , as the vertigo I have had in the past has lasted 2-3 days and been pretty rough.

Has anyone else had that random nystagmus ? We had a big change in weather that day and I had that salty dinner. Not sure if that triggered it? This disease is so random and weird.

Hello, I’ve been struggling with my menieres and wondered if I could be entitled to pip. I do work (but struggle) but since having this disease quite a bit has changed in my life. I no longer drive due to sudden vertigo attacks - could I be entitled to help with the transportation? I also suffer with extreme fatigue after a day at work trying to deal with loud noises and find food prep quite hard to do as I’m just exhausted. If anyone receives any extra help would you be willing to share your experience? I’ve been told the wait for pip can be months. Thank you 🌼

I had my first vertigo attack yesterday. I went to an ENT today. He thought that I presented all the symptoms of Meniere's but could not diagnose officially until I got a second vertigo attack. He gave me a diuretic and told me to limit salt to 1500mg/day.

I told him that I'm an endurance athlete and run more than 100 miles per week many weeks. I asked what I should do about the salt my body loses from sweat. He did not have any good answers and just said that it was a "good question".

Has anyone else been in the same situation? What's your rule of thumb for what to do about salt when you sweat 5-6 pounds per day?

About 10 years ago, I was being evaluated for Meniere's disease but had to move states and then financial issues prevented me from seeking help after that. I guess I got to a point where I wasn’t having as severe of symptoms and got used to the ones I still have. Though th vertigo has kept me from driving all this time and that’s the motivation behind wanting to get this checked out again. In the meantime, I’m wondering if it’s even possible for this to be menieres, if it sounds like anyone else’s experience or if it sounds more like bppv or something. 

It started after I’d gotten really sick with congestion and had fluid in both of my ears. After I’d gotten over the sickness I was left with constant loud tinnitus, fullness/pressure in my ears, pain, sensitivity to certain sounds, muffled sounds, dizziness and vertigo.

 Initially, I might have had a few vertigo episodes that seem more like menieres to me than what I experience now. But at the time I was also having anxiety and panic attacks for the first time and it’s been years so I don’t really trust my memory on how my vertigo was back then. The vertigo I experience now is more like bppv I think. It’s very sudden and usually only lasts a few seconds at a time. Most of the time I feel like I’m forcefully falling or being thrown and my vision blurs as though I’m actually spinning. I usually grab onto whatever’s nearby to brace myself and my heart starts racing because it’s such a quick jolt it kind of startles me. 

A lot of the times I’m able to connect it to the way I was just moving but sometimes I can’t figure out what triggered it. I could just be sitting there talking to someone then feel this sort of buzzing sensation in my head directly before the spinning starts. Outside of this, I have occasional bouts of longer-lasting vertigo (but nothing as long as menieres vertigo I don’t think?) or pretty strong dizziness, a general sense of unbalance or like I’m on a boat. 

My tinnitus is constant and pretty bad- it’s always roaring, fluctuating high pitch ringing and occasionally other weird noises like beeping. If I’m in too quiet of a room it can feel almost physical, like my head’s going to explode and I can feel a little off balance or uneasy. Sometimes the ringing momentarily gets louder or cuts out on one side and it feels like my hearing cuts out too or I get that fullness/pressure feeling. It only lasts a few seconds but I usually end up testing that I can still hear on that side afterward. That might just be a normal ear-ringing phenomenon though. 

I have noticed that sometimes it’ll feel like one or both ears have ‘popped’ as though the pressure was equalizing but before then I didn’t realize they’d felt clogged. Afterward, I realize how much more clearly I’m hearing and that my hearing was a bit muffled before. I do have chronic sinus issues though so maybe that has to do with that. Other than that, I rarely get ear pain like I used to, I don’t notice much fullness/pressure anymore, but sometimes have some sound sensitivity. 

Anyway, this was way too long so thanks for reading this if you made it all the way through.

I’ve been pursuing the full gambit of Meniere’s treatments with my doctor over the last 2 years. A few months ago I had my first steroid injection in the ear. It was amazing. I was 100% symptom free for a month (the longest I’ve ever been symptom free). After this time, symptoms and episodes gradually went back to their regular pattern.

I just recently went in to get a second injection and have had the opposite experience. No improvement, and I’m actually have more frequent episodes with less symptom improvement between episodes (I used to feel pretty symptom free for a brief period after attacks.)

I know that steroid effectiveness is not permanent and wanes over time. But this feels like an extreme swing from first to second dose.

Oral steroids have also been hit or miss for me. One time they cleared everything up, but all the other times they did nothing.

Has anyone had a similar experiencing with injections?

Have menieres run in the family and four years ago got my first attack. Now I average about 1 or 2 a year. Lately in the past year I've noticed that when I bend over at the hips or lay down on my right side I get this throbbing/whooshing noise that pulses in my right ear (which tends to be my ear that gets full and pain prior/during attacks).

Internet says it is 'pulsate tinittus' but a couple general MDs I have seen didn't think so but also had no idea what it was.

My daily vitamins include:

Green Tea Extract

Ginko

Magnesium

Lexapro

Trazadone

Vitamin D

Anybody have experience with this or any thoughts on it?

Sometimes... Just telling them how I'm feeling stressed me out even more because they think "I'm not doing enough".

They think that because I've been feeling "bad" for '3 days', that I ought to already be feeling good by the 4th.

They compare it to a flu or a fever, where after a few days you feel better.

Sometimes I just say "I'm good" even if I might be feeling a vertigo coming on because their reaction stresses me further.

"You have to do something about it, you can't just stay feeling like that" is what I've been told.

Somehow this illness is my fault, according to their reactions.

I'm drinking a lot of water, taking Betahistine, Aciclovir, meclizine, low salt, very little if any caffeine at all, maintaining low stress days (as best as I can), gotten several Steroid shots..

It seems that the only "way out" is a labyrinthectomy, but I still have hearing left, I don't want to go completely deaf.. and a cochlear implant is out of my reach financially (insurance doesn't cover it, don't live in USA)

I do have days/weeks/months where suddenly I'm feeling cleared up and energized, so I still have hope.

Anyway just wanted to write out my feelings to at least let them out

Thanks for reading if you did :)

So I had my first track in 2020 two weeks after my husbands heart attack. It was the usual vertigo went to er then went home. Had an attack maybe 6-9 months later then fast spreads to now it’s been happening every 2-6 weeks. Sometimes severe throwing up and the works other times just focus on tv and it’s livable. Tried maneuvers that didn’t do anything. Tho to be fair I did several during some attacks and I think you are only supposed to do it once:). The episodes last for hours and then in the hangover for days. Ears are full and forehead full. Mostly ears tho. I do have nystagmus bearing up on both side while lying down with head turned. Doc said this means it is bppv. I read tho that bppv is short and happens with head movements. Mine just comes out of nowhere. Sometimes it feels like a hand covers my left ear and then there it is. Can I ask what the group thinks? I do notice it can happen after a party or stressful day. I think this is meneires not bppv. This was an expert so I hate to question the diagnosis. He is putting it all on the nystagmus. Anyone with the upbeat nystagmus and meneires? Thank you!!! It won’t let me get back into the text to correct autocorrect. Where it says “spreads” it should say forward.

I had a sever episode 6-7 years ago. After that episode I would experience dizziness when I was very tired. Also, it I did work above my head I would get light headed and one time I passed out while on a ladder. Late last year everything just went into high gear. I have it all from vertigo to dropping. I had to go to emergency room and then the next day to my PCP for meds and a referral. I went online today to check my case notes that my Dr. had uploaded to my insurance file. He had written that I was dizzy and giddy. Yes, I was very dizzy and had no sleep in the last 36 hours nevermind that I had been throwing up all night. I was far from giddy. Should I look for a new doctor? Should I ask him for an explanation? It is already hard to be taken seriously with this condition much less to be described as giddy!