#Meniere's Disease

[gabbagepatch]

Listen guys, you don't need to look nice to go outside. Your health is more important than appearances.

I just went on a walk in my pajamas, greasy hair in a shitty bun, acne, and a pair of new balance sneakers. Cars passed by and I said hi to everyone who passed. Did I feel self-conscious? Of course, but it was worth it.

Now I feel a lot better, because I didn't A. Overextend by forcing myself to shower/get dressed/put on concealer beforehand or B. Avoid doing anything because I felt like a mess.

Go outside and be however you are. It's not your job to look good to random strangers, you deserve to go outside.

[scary-lasagna]

How would the creeps react to their s/o who has meniere's disease? I have it and it makes life extremely difficult at times

Jeff

The diuretics are an inside joke in your relationship, the medicine makes you constantly run to the bathroom throughout the day to balance the water build up in your ear.

"Go piss, girl!" He will yell, no matter your identity.

And he keeps extra meds in his nightstand incase you run out before your next subscription, nicking them from whatever houses he's assigned to.

He might sneak a Zofran sometimes because he likes the taste and feel of them when they dissolve.

But he's not very keen on giving up salty foods, and whenever he cooks he'll cook separately so he can salt his own food and giving you none/less depending on the dish and what you've eaten that day.

He doesn't pay attention very well, so you'll be bombarded with questions about what you've ate, if you're stressed, and how you're physically feeling.

He even has a little writing tablet for when your hearing isn't the best, but often just uses it for when he's across the room and wants to show you a stick figure drawing of two of you holding hands.

Lost Silver

Lost Silver is such a sweet s/o, he's very affectionate and considerate, and he's always looking out for you and your health.

He has a setup for his consoles, filled with beanbags and plushies, as well as cup holders and blankets.

And you have a designated spot sitting next to him, either playing together or watching him play on particularly bad days. This way, you can spend time together without straining yourself, and you don't have to get dizzy by standing and walking around, or laying down on the bed and getting nauseous.

Sometime ago, Silver actually bought a little gumball machine full of Zofran, and has timers set to ask if you've taken any daily medications you might be on.

And he'll play a game with one hand and give you head-scratches, tummy rubs, or back scratches with the other. Or if that's making you feel worse, he'll stay by your side nonetheless.

He'll keep you calm and stress free to prevent episodes before they start, but he's working on learning a little bit of ASL to help when your hearing fades in and out.

He's not a huge fan of salty foods, outside of ramen and soup, but he'll try to find ways to adjust to your taste.

[neurocute]

Meniere's Disease Resource Dump

feel free to reblog! here are some resources i've collected since being diagnosed.

General Information

Diagnostic criteria for Meniere's Disease, Jose A. Lopez-Escamez et al. through the Journal of Vestibular Research

Meniere's Disease: Symptoms and Treatment, from UW Medicine

Clinical review of Meniere's Disease, Johnny Harcourt, Kevin Barraclough, and Adolfo M. Bronstein through The BMJ

Section on Meniere's Disease from the Handbook of Clinical Neurology, vol. 137

Etiology, pathophysiology of symptoms, and pathogenesis of Meniere's disease, Michael M. Paparella & Hamid R. Djalilian

Meniere's Disease: Treatment Strategies, Manouchehr Saljoughian through U.S. Pharmacist

Coping & Symptom Management

Self care/self help strategies for persons with Meniere's disease: a systematic review, Andrew F. Long & Alison Brettle

"Day to Day" and "Self Management" articles from the UK Meniere's Society

Efficacy of Dietary Restrictions

Caffeine intake and Meniere's disease: Is there a relationship?, Inés Sanchez-Sellero et al.

Lifestyle and dietary interventions for Meniere's disease, Katie E. Webster et al.

The relationship between nutrition and Meniere's disease, Esma Oğuz, Aybike Cebeci, & Cennet Reyyan Geçici

[edenwolfie]

well i think managing 6 months between attacks is pretty dang good considering I started at 1-2 a week in the beginning. however this attack hangover shit still fucking sucks. would love to have my hearing and balance back. that'd be nice.

[your-sexual-curiosities]

Anxiety Disorder Venting

If you haven't read my pinned post. Please do so to understand what's going on with me, myself, and I. Otherwise, this won't make sense to you.

Read More Underneath Please

I'm just an 27 year old black american woman suffering from mental illnesses and have been recently diagnosed with Ménière's disease (in both ears, which is rare). I'm trying to get better for the sake of living. However, I soon now realized that I couldn't do it alone.

I went to wake up my mother while having an anxiety attack. I was crying very loudly and just wanted the comfort of my parents to hold me in their arms and say, "Everything is going to be okay."

That's not the response I got from my mother.

She woke up and said, "What's wrong?"

My response was, "EVERYTHING.... I'M STRESSED!"

She then had the audacity to look me straight in the face and yelled, "You woke me up for this!?"

Ma'am

I'm literally going through major big changes in my life that will affect and impact my ability to live normally.

I thought I could handle myself with mental illnesses since I'm going to the psychiatrist and taking prescribed medications.

But, I can't handle going deaf and losing my hearing.

I can't handle quitting my job because of my long-term disability. Who is going to pay my bills or go grocery shopping for me? Who is going to take care of my baby girl, Ginger Spice, to take her to the park or to take her to the doggy training?

This affects me entirely. I haven't experienced dating or getting into a serious relationship yet. I haven't even experienced getting laid. Now I can't have these things. I wouldn't even get married or have well planned birth. I won't even start my own family.

I don't want to be alone forever. I don't have family support like I suppose too.

I'm just so defeated and down like I just permanently lost the fight or the will to move on. So many things are going through my mind, like how I'm going to pay for hearing aids or how do I file for disability? It's just so much and too much all at the same time.

[heretherebewolves]

Hi, I'm here to rant about ableism.

Y'all ever noticed the things on train platform floors - numbers denoting carriage number?

Ever noticed a train actually line up with them?

Even better - most trains (in my experience) have letters, and it's anybody guess which end is gonna come first.

This, my friends, is why, despite having a reserved seat, I am currently sat on a vestibule floor.

I have vertigo. Moving on a flat stable surface is more often than not like trying to walk on a bouncy castle. Throw in a floor that moves, and my outcomes are typically either hitting the deck or throwing up.

Can we sort this shit out? I paid enough for my fucking ticket - never mind that I cant feasibly take my wheelchair without it taking way more effort than the relief I'd find - I should not be forced to sit on the floor because y'all can't figure out how to make the right markings on the ground and actually use them for their intended purpose...

(Note - every other seat was showing as booked, and I'm not enough of an asshole to swipe someone's spot just because UK transport is shitty to disabled people.)

[watercolourferns]

DAAAAAD C'MOOOOON!!! If I have Meniere's I have Meniere's!! What's the big deal!!! At least I'm 36 and not 56 like you when you got diagnosed, and I'm cutting down on a lot of things YOU DIDN'T. The % of people that 100% lose their hearing is very very low. There's a bit of loss, yes, but it doesn't mean I'll go deaf completely.

That's for one, and for another, if I need a device there's a shit ton of newer ones that work much better than the one you got when you were diagnosed!! There's even earbud-like ones now!

People all over the world require hearing aids, they lose their hearing, they go on wih life... BECAUSE DISABILITY IS JUST A PART OF BEING ALIVE!

Gods, I understand why he's so anxious and in denial, but IT DOESN'T HELP. This back and forth doesn't help, it exhausts me and I've told him and he still does it... He's so anxious even my anxiety has anxiety after I chat with him about these things. I love him too much to be harsher on him, but damn... I wish he'd stop thinking only from his POV and stepping into my shoes...

The vertigo is there, the signs are there! It could ALSO be a processing issue because I'm Neurodivergent and most likely have AuDHD? Yes. BUT IT'S AN "ALSO" NOT AN "INSTEAD"!!! Two things can happen at once!!!

[rumandstars]

It’s amazing how much better you feel when you aren’t throwing up blood every other week. Whew, those Ménière’s episodes were really wiping me out. I was ready for death just so I didn’t have to see/feel this ever fucking again: 🌀

I’ve had well over a hundred episodes the past five years, terrible, it’s hard to understand the level of medical trauma with this illness. Every episode = like being tortured mentally and physically, not exaggerating. Uncomfortable, painful, exhausting, disorienting, debilitating, scary because you worry about your esophagus getting long term damage from uncontrollable vomiting + there’s always a chance you could end up hospitalized due to dehydration. Ménière’s Disease, the illness that won’t kill you (probably), it’ll just make you wish you were dead.

This has been my best year in five (or six?) years…ahhhh. I’m so relieved ugh. Still have some symptoms like lack of balance, hearing fluctuations, and occasional dizziness upon waking but the extremely debilitating spells seem like they…*gulps nervously*…are starting to pass…

Eeee I wanna get back to living life. I’ve lost so many years to this illness! It’s been a hard road but I’m still here.

[dk-thrive]

A lack of understanding made into a mouthful of air. We know that something is wrong, but not why.

John Cotter, Losing Music: A Memoir (Milkweed Editions, April 11, 2023) 

[joneevarts]

Hey, does anyone with meniere disease knows what triggers the hearing loss and tinnitus? I know I always have severe back and neck pain when it happens, so I'm wondering if maybe bad posture or lack of stretching could affect it? I know salt and caffeine are a no no too.

[gabbagepatch]

Having subjective symptoms is very isolating because there is no way for others to witness what you're going through. They just have to trust you and you have to trust them to believe you. I know everyone in my life believes it, but they don't get it. I expressed to my therapist that I feel that all of these symptoms begin rattling around in my head and it creates a barrier between me and others.

My world: hurting, trying not to show it, coping with pain, fearful, etc

Their world: normal, uneventful, happy evening

It's very difficult to have something happening to you that nobody else can see.

[riverageleis]

Having a chronic illness is a wild ride. I was up at 2311 after 3 hours of sleep. I take Klonopin before bed. If I take .5mg I'm dumb all the next day, so I take .25mg and pray to Hypnos. Some days he grants my prayers. On other days he refuses. He's refused this week. No amount of rest has assuaged this bone-deep weariness. No cocktail of my medication regimen has touched the anxiety, aches, dizziness, and migraine. My jaw keeps subluxing in my sleep. I wake up and have to put it back in place manually. My therapist wonders if it's all the stress from the last several months. I was stable for 4 years with my illnesses. All of them. I got covid a year ago and every day has been a Sisyphean effort against the worsening symptoms. I constantly want to give up. Succumbing seems the best option. I just can't seem to, tho. It's always one more breath. One more step. One more sleep. One more meal. How many 'one mores' do I have? That's the question.

[aami98]

Me thinking people hear static noise when they sleep in the night.

My ENT attending: first of all that's tinnitus second that's not normal.

[astridellejo]

Did COVID Seriously Give Me Meniere's Disease?

TL;DR :: Maybe?

First a quick review of the key features of Meniere's Disease

typical onset between age 40 and 60 • (I'm 49.)

vertigo/dizziness • (Ugh. Yes. It happened during my dance class last week, as well as other times in the last few months.)

pressure or fullness in ears • (Occasionally, and it's annoying.)

tinnitus • (Permanent in the right ear, occasional in the left ear.)

low frequency hearing loss • (Yeah. More on this below.)

This is gonna be a long post that will only be relevant to, like, ten people. So unless you're curious, just ignore this.

I got COVID for the first time in autumn 2023 and it knocked me on my ass. I lost functionality of my voice, which seems to be a permanent feature now, and the unending tinnitus I have in my right ear is now louder than ever. I've been keeping track of the tinnitus thing as an indicator of potential hearing loss for about three months, and I've noticed a very curious feature: I'm losing my low frequency hearing. Yeah, like a 25dB loss at 500 Hz, and a 30 dB loss in 250 Hz and lower. I did one of those iPhone audiograms, as well as some web-based ones, and my chart consistently looks like a frown: ⌢ because I've also got a 30 dB loss above 4 kHz, but only in the left ear. It's ridiculous that I have slightly better hearing in my permanent tinnitus ear.

Then last week I had the joy [sarcastic] of experiencing nearly a full week of dizziness, plus an actual vertigo episode during and after my ballet exercise class in which I collapsed as I was walking. Fortunately there was a bench right next to me. The vertigo only lasted a little while, but the dizziness was with me for almost a full week. So that was fun.

I did a search for 'vertigo and tinnitus' and 'hearing loss', and the results suggested Meniere's Disease. Read a whole bunch about it in the medical journals, and my first thought was, "How the fuck did I win this particular genetic lottery?!" (It's the same first thought I had when I learned I had spasmodic dysphonia.) So then I asked the internet if COVID could be a potential cause of this. Just as with spasmodic dysphonia, the answer is maybe yeah I guess? Wow. Thanks, COVID. I get you once and you fuck me over forever? That's bullshit.

If this is really the cause, why didn't symptoms start happening sooner? I got COVID almost six months ago. Well, maybe symptoms were happening and I just wasn't paying attention because I was focused on the deteriorating functionality of my voice. At any rate, I'm paying attention now. I'm going to start documenting my dizzy spells, vertigo episodes, hearing blackouts, and any other oddities. Maybe with another three months of actual data, I'll be able to have a clearer picture of what's going on in my ridiculous meat prison.

For now, just like with spasmodic dysphonia and my subsequent inability to speak, it's mostly just annoying. If it becomes actually disabling later, um, well then I guess I'm just going to get more annoyed and have to find workarounds. If I lose my ability do dance and do yoga and ride my bike because of The Dizzies, then I will actually be sad and angry. Not sure what my reaction to losing my hearing would be.

[rootsandwingsboutique]

On to the next!

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SHOP: https://www.rootsandwingsboutiquehandmade.com

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ETSY: https://rootswingsboutique.etsy.com

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#menieresdisease

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#maker

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[crowsblogs]

Me: so what's wrong with me

My ENT: well, you have a balance disorder

Me: what kind

My ENT: -never elaborates-

Rant: Bro, how am I supposed to be proactive in my health care when I'm not even told specifics. The most he's told me is that it isn't bppv! He mentioned menieres before, but said it'd take a lot of appointments to diagnose & didn't further do anything. With all of the symtoms and tests it all DOES lead to menieres, but how am I supposed to get a diagnosis if my ENT doesn't seem to want to do anything?