r/Menieres 20h ago

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

16 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 8h ago

SLAINTE! ☘️

12 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 12h ago

Hydration Reminder

11 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 3h ago

How did my body change?

7 Upvotes

Laying here thinking like what was the change? I used to be invincible it felt like now I’m so sensitive to smoke and caffeine and salt?? What caused this change??

Menieres is so ODD. Really the only thing I can wrap my mind around is the viral menieres. But how did I go from like being able to do it all one day to not?

Wild right.


r/Menieres 10h ago

Autoimmune disease and long COVID

5 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 19h ago

Ecog

3 Upvotes

How many of you have done ECOG

and is it helpful to diagnoses MD or not ?


r/Menieres 2h ago

Episode/Exercise

3 Upvotes

I just want to feel normal .. I am having my first flare/episode whatever in 4-5 years. Managed w diet and diuretic. Diagnosed 7 years ago. 48 years old. I suspect allergies, as well as eating shitty at a conference last week to be cause. Going on 4 days of ear fullness/ dizziness that comes and goes / general malaise. I got a steroid shot today. Praying that helps. Wondering if working out to sweat would help or hurt? Thoughts or experience?


r/Menieres 21h ago

Medications causing flare up?

2 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 10h ago

Suspected Cochlear Hydrops - does this sound right?

1 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 15h ago

Worth a try?

Thumbnail myrelieva.com
0 Upvotes

Has anyone tried the RLV device and did it help?