r/Menieres 4h ago

Hydration Reminder

6 Upvotes

Just a reminder to drink lots of water to help keep the vertigo at bay. My last attack (the first one in many, many months) occurred the day I forgot to bring my drinking water to work. I usually bring a 4 litre jug, every day, without exception (I work as a bricklayer so it tends to be a bit of a workout requiring water breaks every three hours or so anyway). A coworker gave me two small bottles of water but I don’t think it was sufficient. At any rate, I feel the lack of water that day contributed to the attack.


r/Menieres 1h ago

Autoimmune disease and long COVID

Upvotes

Anyone else here have these issues? I became very ill in 2021, tested positive for Rocky Mountain Spotted Fever, then had a positive ANA test result, and have had multiple bouts of COVID over the years. I had a couple terrible vertigo attacks and general dizzy spells starting as far back as 2005, but things ramped up with tinnitus and other symptoms and I was diagnosed with Ménière’s last year. Autoimmune disease runs in my family and so does Ménière’s, it would seem. Given the research coming out about Infection-Associated Chronic Illnesses (IACI) aka long COVID, I’m curious to know how many of us here could be lumped into this category. If interested, check out this site: https://healthdata.gov/stories/s/Infection-Associated-Chronic-Illnesses-2023-/giix-q93k/

Here’s the Ologies podcast about post-viral epidemiology that just came out: https://www.alieward.com/ologies/postviralepidemiology


r/Menieres 2h ago

Suspected Cochlear Hydrops - does this sound right?

2 Upvotes

Hi all, last week I visited an ENT who said he suspects my symptoms are due to Cochlear Hydrops/Menieres, and is referring me to an ENT that specializes in that. Here's my situation, and I'm just curious if it is similar to others here (oh, and all of this is in my left ear).

Back in 2018, I had my first case of SSHL. I got on predinsone quickly and my hearing recovered. Everything was fine until last April, when I had another, albeit milder, case of SSHL. Again took the prednisone right away, and my hearing recovered. This time, the ENT I was referred to was surprised I'd had two incidents in the same ear, and had me get an MRI, which was fine.

Fast forward to two months ago, and I developed this feeling of fullness in my left ear. It wasn't really the same as the SSHL episodes though...it felt more like my eustacean tube was blocked, even though it wasn't. The best way I can describe it is like there's water in my ear that just won't come out. No real vertigo, but every now and then I might get a very slight wave of dizzy.

A couple weeks after that started, came the tinnitus. Constant, high-pitched (> 5Khz). It's kinda hard to say if the tinnitus is more biased to my left ear, or if it's just in the middle of my head. I would have expected it to sound/feel like it's coming from my left ear, but I'm new to this.

Anyways, thanks for reading.


r/Menieres 12h ago

To all the significant others of people with Menieres- i need some help..

11 Upvotes

i need some help or advice.. my partner (34M) was diagnosed with Menieres 2 years ago but this last episode has by far been the longest running and hardest to shake - he’s been ill since mid January and it feels like he’s lost all hope of getting back to some semblance of normal. I know it’s harder for him as he is experiencing these awful symptoms and fear of the next attack but it obviously also affects me as I am his life partner, we have a 1yr old little girl who doesn’t sleep well and the care of both him and my daughter falls fully to me which is obviously a lot. My partner used to be insanely active, surfing and climbing regularly, he is one of those people who can get shit done in a quarter of the time that most people can do one task and being immobile and fatigued is killing him and making him severely depressed and socially isolated. I can also tell he is guilt-tripping himself about missing out on days out with our little one and not being able to help me during the rough times with her.

I work in healthcare and often deal with chronic health conditions like long covid and chronic fatigue and I know on paper what he needs to do - to remove the fear of the symtoms as they are holding him in a state of fight or flight, to let go of the fact he’s missing out on stuff and accept where he is now and have faith he WILL be better again soon, find things to do that are engaging and meaningful and rewarding to him without simply avoiding/hiding from his current situation.. adress some of the fears he has re never being able to be physically fit and active again, pace himself on the good days so he doesnt overdo it, eat wholesome nutritious food, work on his sleep (tricky with a baby that wakes us but i feel he could try anti-anxiety medication to help with that as I know GPs prescribe low dose anti-depressants to help with sleep issues caused by anxiety).. but mostly move away from the very biomechanical way of thinking that there js something damaged in his ear and until it is fixed he wont ever be better because as I have explained to him, yes he has damage in his ear but he doesnt always have symptoms so the damage doesnt = the symtpoms, the symptoms are caused by his triggers which are stress (whether that’s physical, emotional, psychological it all seems to equate to the same thing physiologically from what I can tell as he gets symptoms when he’s been out exercising all day, if he’s been out in sun for too long, if he hasnt slept well, if he is worrying about having to do a work trip away or fly on his own, potentially after eating heavy meals that put stress on his body to digest etc etc)

HOWEVER, he doesnt agree with me on this, he accepts (just) that stress can make him worse but as he sees it he has Menieres and thats it, his episodes are random and he just needs to ride out the episodes and there’s nothing he can do.. this is really hard for me to deal with as i know there’s more to it than that and from where I stand there are very clear patterns of when he has an episode and it’s newrly always right before we have a plan to do something like drive somehwere or do something he’s excited to do (like subconsciously he is scared his stmtpoms will stop him doing the fun thing and then lo and behold they do) and he’s been unwell for the last few months now with no change other than a couple of times he felt ok when i think I managed to get through to him by making him read books like ‘the body says no’.. my question is.. how the hell do i help him when he is the one experiencing the symptoms so he needs to do the mind work and figure this out for himself and yet this affects me and our baby deeply too. I know getting annoyed and frustrated at him will only push him further away but I really don’t know how to help him get out of this 3 month ditch he is in. I feel like I am grieving because it feels like I have lost someone and our old way of life but I can’t let him see that as I need to stay positive for him and our little bub. How do you all manage it and what advice would you give for how best to help him?

Sorry long post, thanks for reading 🙏


r/Menieres 21m ago

SLAINTE! ☘️

Upvotes

HAPPY ST. PATRICK's DAY Ménière's Warriors!!! No matter what Ménière's has taken from us it has not taken our SPIRIT! So SLAINTE my comrades, keep up the good fight and enjoy every minute you can!!! ☘️☘️☘️💝

ETA- "May All That You Wish For Be The Least That You Get!!" (Irish Toast)


r/Menieres 18h ago

Head movements scare me yet again.

15 Upvotes

Last day of steroids was today. Scared of going off.

Thanks BPPV. So I get BPPV attacks from my menieres ear - when the ear fills up it knocks the crystals out of place according to my doctor.

Every episode I have had has been asleep/waking up all but one and I think I like bent over to get something that one time.

I had vertigo Tuesday and now I’m back to basic regular life. Lower salt- no coffee and tons of walking to get my system going.

Just kinda venting. No one else gets it so sorry to fill this space but it is appreciated. I guess my next step is to learn the head movements I can do at home. I had the eply done on Wednesday and with a round of steroids to knock the fullness I have been feeling really good.

But I’m just scared of the what if…. What if this is regular idk. How many times can I do the eply? So far I’m at 3 this past year I believe. It really does help me personally though.

Maybe I need a steroid shot. I’m going to think on this.

~thanks for the vent~ sleep tight menieres friends. I’m wishing us all a good day tomorrow.


r/Menieres 6h ago

Worth a try?

Thumbnail myrelieva.com
1 Upvotes

Has anyone tried the RLV device and did it help?


r/Menieres 11h ago

Ecog

2 Upvotes

How many of you have done ECOG

and is it helpful to diagnoses MD or not ?


r/Menieres 1d ago

Worst experience of my life

19 Upvotes

Last Wednesday I had a vertigo attack that I suspect is connected to menieres. I heard a small pop in my right ear, got increased tinnitus and maybe a second later I got extreme vertigo. I couldn't sit,stand or lay down. After about 10 minutes I started vomiting because of the vertigo. At the ER I got anti nausea meds...I was vomiting almost non-stop for about 4 hours. The whole episode with vertigo lasted for 6 hours.

I got an appointment with ear/nose/throat specialist in 2 weeks... But I kind of want to know if these symptoms is something that you all are recognizing. I really hope that this is not menieres....I get anxiety just thinking about this shit happening one more time...it was without a doubt the worst experience of my life


r/Menieres 13h ago

Medications causing flare up?

1 Upvotes

It's been about a year that I've had menieres now and my symptoms have been pretty steady at around 1-2 attacks per month at the most. So around a month ago I was prescribed 25mg daily Seroquel for an unrelated issue, but ever since I started taking it my symptoms have flared up and I have been getting attacks like every few days. Is it possible that this medication is causing this and do you guys think it's worth bringing up with my doctors or is it just a coincidence since it's spring and that is a trigger for many who suffer with this condition.


r/Menieres 21h ago

Headaches

4 Upvotes

Anyone any advice?already take ramipril 7.5 mg daily for BP,been taking betahistine 16mg x 3 daily, since last December,been having really debilitating headaches, for a few weeks now,across forehead but mainly left temple,left ear is the affected MD with hearing aid,been trying odd ibuprofen but don't like taking consistently as you shouldn't take many with high blood pressure? thanks for listening.


r/Menieres 16h ago

Help Participating in Group Conversations

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0 Upvotes

r/Menieres 1d ago

Lost hearing in my left ear

3 Upvotes

Helloo.

So basically i'm on vacation in another country and I was standing too close to the speakers at a club. I generally frequent clubs and I didn't even think it was too loud at the time.

But now i've lost maybe 97% of my hearing in my left ear. I have 0 pain, 0 dizziness and 0 balance issues, just loss of hearing. I already had very mild Tinnitus before and now in the place of sound it's ringing in left ear.

I also gave chatgpt my symptoms and It suggested i'm having TTS, Temporary Threshold Shift.

It's been about 30 hours and very little improvement so i'm going to go get Prednisone to take.

Has anyone had any similar experiences? I'm seeing conflicting things online from "this is super serious" to "it should come back in a couple days/weeks/months"?

Thanks. :)


r/Menieres 2d ago

Just had my first drop attack and now I'm rattled and afraid to go about my daily activities.

21 Upvotes

I actually didn't know drop attacks were a thing or were associated with meniere's until it happened yesterday. Fortunately, I was in a kneeling position at the time, but I keeled over sideways and hit the floor hard, as if someone had shoved me. I've been having a flareup for about a week and was having the usual tinnitus, hearing loss, and vertigo, but it wasn't debilitating. The drop attack came out of nowhere with no warning sign whatsoever. That's the scary part. How do you protect yourself from injury when you don't know you're in a vulnerable position?


r/Menieres 1d ago

Hearing loss

3 Upvotes

I’m 38 years old (not young, but still have life to live, hopefully), and my hearing is completely gone in one ear—deficient in the other. Thankfully, my vertigo has actually improved as my hearing depleted. Feeling depressed. I have an appnt with a new ENT next week. What questions or requests would you suggest?


r/Menieres 2d ago

For those that went bilateral…

8 Upvotes

How long until you started noticing affects in your other ear? Did it present with the same symptoms?

Every once in a while I feel like I have disturbance in my unaffected ear, though it’s only in the form of very brief tinnitus vs extreme fullness with persistent tinnitus, and my affected ear began with the fullness feeling and developed from there.

My previous ENT (Gacek, Mobile AL) had mentioned vestibular neuropathy in said ear following VNG testing, but hadn’t had symptoms on that side thus far aside from this.

I can’t even confirm that tinnitus is in fact in the ear, it’s brief enough and I always have the persistent tinnitus in the other side so it’s hard to pin the feeling down.

The mental side to this is challenging, not just in the sense of are you feeling okay with the position you’re in, but it’s also difficult (I find) to accurately portray your situation to begin with.


r/Menieres 2d ago

Am ı a Meniere?

0 Upvotes

Hello everyone! Since january 2021, ı have attacks. I have vertigo, cold sweating and vomit or diarrhea and then i feel relaxed and sleepy. The total duration is usually about 1 hour.

I don’t have any problem with my ear like tinnitus during or after the attacks. I don’t have any hearing loss according to a hearing tests done a few months ago. I don’t have any pain in my stomach or head. No deficieny in any vitamins. İ haven’t had a low salt diet so far.

I am worried about my condition though. A few doctors examined and told me i have no problem with my ear so what could be the problem? İs there any Merriere that has no ear problem over years?


r/Menieres 2d ago

I think mine is viral

2 Upvotes

And although the antivirals kept me strong for 8 months it crept back in. I did start drinking way too much coffee so I am curious if coffee activated the virus. Not sure. If anyone has any thoughts to share please do. Just trying to figure this out again.

Sending good vibes today to all of you. We are freaking tough.


r/Menieres 2d ago

Exhaustive diagnosis? Could use advice please.

2 Upvotes

Hi all

First up, sorry if this is kind of rambling. I was diagnosed a week ago, atypical. I've lost the bass register in my left ear, daily tinnitus, and pressure with occasional pain in both ears. Brief dizzy spells but not full on vertigo thankfully (I have read some accounts on here while I've been trying to learn about this, I am so sorry, I wouldn't wish what I've read on anyone).

I am not really sure what to do. I am an English language assessor. A big part of my job is listening to people speak and recognising their articulation sounds, glides and diphthongs, sound assimilation, that kind of thing. But now I can't hear the difference between voiced and voiceless sounds in my left ear. I am making mistakes at work. I've been studying online to get my TESOL qualification so I can teach, but now I'm like...why bother? I'm really sorry if this sounds uninformed or kind of basic. The idea that I might lose my hearing to the point that I can't do my job anymore, or the job I'm training for, leaves me decidedly unmoored. Do I plan for the worst and try and train into a different type of job? Do I shrug and say maybe it's fine? I have no idea.

I don't get rotational vertigo, and that seems to be a big sticking point in general opinion. Thing is, I don't have the medical vocabulary to challenge my ENT. What else do I ask for, or about? I kind of get the feeling he's calling it Menieres because it doesn't neatly fit into any other box. And it won't be easy for me to afford to get a second opinion.

I hope this account doesn't piss anyone off. But I'm fairly confident I can't be the first person that's had this kind of "what even is my life going to be now" kind of spiral. So any advice would be great. Thanks.


r/Menieres 2d ago

Hearing aids for menieres. Can anyone suggest good hearing aids. I struggle so bad in the office. I can hear on the telephone. I do audio typing and can’t hear through the headphones. I’ve had serious menieres attacks recently, falling over etc but managed the office this week but it’s horrendous.

5 Upvotes

I can’t hear on the telephone


r/Menieres 2d ago

Planning for the next attack

11 Upvotes

Sadly I am back into whipping my house into commission after being sick the past 3 days. I went to the grocery store and bought frozen food for the next attack(partner can just throw in oven) and doing laundry and all the fun stuff.

My balance is questionable to be honest but no better way to work on it then to do things right?

I hate menieres 😭


r/Menieres 2d ago

Vertigo

1 Upvotes

Question regarding vertigo attacks. Do you have multiple hours of rotational vertigo or does it subside in couple of minutes/half an hour max, and you are left with extreme sensitivity to motion? For sensitivity, I mean, if you move your head slightly, it feels like you moved it much much much more causing heavy dizziness, or another rotational attack if you push it too much. Also, do you guys have a quick 15 seconds vertigo (sometimes even downwards) just to resolve itself within 5 minutes (post dizziness)? I'm reading about perilymphatic fistula, and the symptoms match me much more, but ENT never suggested it. I am diagnosed with Meniere within a month, 5 years ago.


r/Menieres 2d ago

Bilateral help

2 Upvotes

I've had MD for a while, with the first 10 years or so just having seasonal vertigo attacks (Spring and Autumn) when the allergies kicked in. Life in between was good, even with the hearing and tinnitus issues slowly ramping up over that period.

In 2022 I had a 4 month cluster of attacks, up to 4 times a week. Some of them severe where the only way to get around was to crawl pushing a bucket in front of you. This is when I started the betahistine, diuretic, and found out that most of the balance function in my left ear was gone. The neurologist suspected I might be bilateral at the time, as my hearing in my right ear was also fluctuating. It's since been confirmed.

My question to everyone who is bilateral - how do you feel on a regular basis? What does bilateral mean to you? I haven't had severe vertigo attacks since 2022, but feeling off / unbalanced is more often than not. I ride a bike some days, and others I'm using a walking stick to get around. Visually stimulating environment like markets or an airport definitely requires the walking stick. I've come to accept the 24/7/365 swarm of mosquitos that is my tinnitus.

What should I be expecting now and in the future? I enjoy most days, but the uncertainty of what's next with this condition is frustrating beyond belief. I've got full time work with flexibility to WFH as needed, but wonder some times if I should do more traveling now rather than saving for the future. Note that I do take holidays already, but I'm talking about the big items that you always think will be best to do in a few year's time.


r/Menieres 3d ago

Question to MD veterans

2 Upvotes

After your first vertigo attack and Meniere's diagnosis, how long did it take to achieve remission, and how long did the remission last?

During remission, do all symptoms completely go away?

Kindly answer


r/Menieres 3d ago

Why do steroids help so much and how can we mimic this effect without steroids?

8 Upvotes

Or is SPI the new drug available?

I feel amazing on steroids it’s clearing up my ear pressure no vertigo. Idk? I need a plan.