#menieresdisease — Public Fediverse posts

#MénièresDisease #Vertigo #Caffine #Salt #HearingLoss #Balance

It took three years to get a diagnosis of Menieres--2017 to 2020

It's been 5 years since I had caffinated coffee.
It's been 7 years since I shook a salt shaker.
It's been one day since I stopped decaf coffee.

I began having severe vertigo last week. 3 very strong episodes, what I scale as 8 out of 10, 10 being a drop attack. Yes, that's just what it sounds like--no warning, no spinning or tilting--just down.

2 of them happened while I was driving. It really SUCKS and is very scary because even trying to get to the side of the road seems impossible when everything is sliding and tilting and moving up and down.
One other was milder.

This week one severe (again while driving!) and three small episodes.

I had been free of it for
nearly two full years, after an injection into my right ear drum.

I'm not fucking around with it. I called my doctor and am scheduling a second injection---the risk is deafness on that ear, whech already can't hear. Th eprevious injection caused no drum tissue damage, so it's worth it for me.

End of my pissing and moaning. I am very grateful for medicare and secondary insurance.

@Rasta

Thanks for posting this and the hashtag for tinnitus. If I may ask, have you found any of the cannabis products to be helpful in that specific area.

I also have it, and in recent months it has been worse than ever. I have bilateral hearing aids due to a diagnosis of #MénièresDisease which was finally what they settled on after a dramatic loss of hearing in one ear.

#MénièresDisease #Hearing #Family #Friends

Small rant, just to get it out there.

It's been 5 years since I've started to lose the hearing in my right ear. I finally got a diagnosis of Meniere's disease. It's amazing how many people, including my family and close friends don't seem to realize how hard it is to not be able to hear them.

Thankfully, I do have bilateral hearing aids but in a crowded room. It's nearly impossible to hear someone directly in front of me.

If I turn my hearing aids up for the bad ear, the better ear is far too loud. People joke around and ask me if my hearing aids are in or are they turned up when I say I can't hear them.

I have been very clear in my replies in the last week, asking them how it would feel if they lost one of their five senses. I think they are noticing how frustrating and worried I am that I might lose all my hearing.

I am beginning to understand how older people when they lose their hearing completely withdraw from the world. I hope that does not happen to me.

End of rant.

I'm sitting here doing a waffle. My favourite author, Seanan McGuire, is going to be in London Friday after/evening for a signing -- aka, a time of day I'm actually functional. But like... it's London, and it's going to be hot, and bleh. I mean, having said that, I'm looking at what tickets and Undergrounds I need to do the do, while trying to make myself *not* like, give several hours on either side. Having said that, there is totally a Chipotle right there. I've not had Chipotle in over 18 years, so that would be a nice itch to scratch.

(having said that, I also have to worry about things like being alone, and the weather turning hot -- it puts me at risk of having a vertigo attack, and that's a serious thing I have to consider)

Past that, been feeling a bit antsy. Like I don't quite know what to do with myself. It's really annoying, to say the least. What I want to do on one level is just sit here and knit, while another is like, gah, that isn't enough, and the games you're trying to pair with it aren't enough. Returning to smashing ('Dysmantle') seems to soothe, so yeah.. I guess some more of that then. xD

#deardiary #dailylog #menieresdisease

It feels like I've got a bloody hornets' nest in my sodding ear.

#menieresDisease #imGoingSlightlyMad

My head feels like a basketball in a vice.

Yay 😬
This exotic disease is getting old very quickly

#menieresDisease #noJokesToday

This week is a week of floating my teeth, ha ha. So like, Meniere's Disease is poorly understood, but one of the big theories is fluid build-up in the inner ear. So stuff like diuretics and low salt diets are often prescribed.

But for me... I don't retain water. Like, I didn't even in pregnancy. So when I started having more wobbles after dinner, I'm like... more water after dinner? Doctor is like sure, sounds good.

And this week it finally docked in my dim head that heyee, maybe actually drinking sufficient water during the day will help too, you dumb sweet potato self. Unsurprisingly, it helps :p So just gotta sit on myself to remember to drink a reasonable number of pints during the day, instead of like, half of one and a few sodas. It's not like I mind drinking water, I just sort of forget. xD

Past that, last day of work for a week, woo, etc. Spouse booked us off for half-term; we're not going anywhere or doing anything, which is perfect. We definitely have a preference for staying home and chilling. The only thing planned is to get Chinese tonight. We always get enough for two nights because of delivery costs, so nom nom, beef chow mein for me.

#dailylog #deardiary #menieresdisease #raventhecat #catsofmastodon

Just got back from my 1st Annual ENT Appointment. My hearing hasn't gotten any worse in the past year, which is win. The doctor and I are satisfied that medication is well managing my Meniere's Disease, though we reserve the right to tinker up my main med if needed. We're in agreement about titrating off of Prochlorperazine, because I'm not convinced it's actually helping. It's not hurting though, so. We'll see.

Today is also awesome, 'cause we are *finally* getting a shower in. Our handyman is only... oh... 13 months late on doing it, but we forgive him. He's had health issues, and he's also been training up his daughter as his apprentice, so busy.

Right, gotta get back to work. I'd like to get stuff done before my normal knocking off time, so I've got bonus caffeine and am trying to find a bit of focus. So it goes.

#deardiary #dailylog #menieresdisease

#MenieresDisease #HearingLoss #ASL #Deafness #TeachingASL

I'm planning ahead, hopefully I will not lose my hearing altogether, but if i should, I want to be prepared. So...American Sign Language...

If you have any experience with it, esp learning it as a hearing person, is online learning or in person learning the better method?

#MenieresDisease #Tinnitus #Vertigo #WellThisSucks

After nearly 4 hours of vertigo, I can finally walk and type. I was bringing our dog to the vet when it struck. I was barely able to pull over!

I have had episodes for a few years now and finally got a diagnosis of Meniere's disease.

I am on two meds for this issue, and I dislike the Nortriptyline a lot. The Betahistine didn't seem to have an effect, and it's not a covered medicine---172 bucks a month.

Typically, my symptoms vary from mild to moderate and last under one minute--strong would be a drop attack where there's no time to grab anything and its body meets floor.

I have been seeing a specialist (so very thankful for insurance!) and have had a series of tests, with a couple invasive options left for me, each come with permanent hearing loss in the affected ear. But if that's what it takes, so be it.

Today sucked.

Looking forward to tomorrow's Folk Horror film festival at Derby Quad cinema, though I feel like crap today. Meniere's Disease rears its head again. Still, I'm determined to go, so bollocks to it!
#film #cinema #horror #menieresdisease

Horrible bad day thanks to Ménière's disease. It’s the first really bad attack in almost a year, so grateful for that. But my god today it seriously reminded me of its existence.

Eventually passed around 5pm, after kicking in around 11am. Been laying down all day but now I’m just exhausted, which is normal after such an episode.

Hopefully it’s just a one off and not the sign of another bad period ahead.

On a plus, I did binge Bodies on Netflix. Which was rather good.

#menieresdisease

Today is going to be a really interesting day!

I have #menieresdisease , which is a #vestibular disorder.

I've been sent some drone footage of a clients business that needs to be edited and added to his website.

The video is great, but it's super spinny, as the drone flies around the grounds and in and out of all the rooms in the buildings.

So far, I've watched it once, and already need to go lay down!

@Ziagrrrl Thanks for writing this. I suffer from #MenieresDisease, a type of vertigo. I frequently have to deal with those physical symptoms (although thankfully not the 'Alice in Wonderland' effects. I don't think people realise just how debilitating it can be, your article covered that extremely well.

For the first time in months my Ménière's disease is back with a vengeance this afternoon. It’s been creeping up on me for about a week now, but since I’ve learnt to manage it now, it hasn’t really gotten bad for over a year. Today though it just wanted to show itself big time and remind me that it’s in charge.

So it’s early to bed and hope it settles tomorrow, as I’ve some busy days in the garden ahead getting it ready for my youngests graduation party on Thursday.

#menieresdisease

Current #tinnitus vibe: Pressing an ear to the interior wall of an airplane in flight, with a hint of screaming. Everything may be on fire.

#VestibularDisorder #MenieresDisease #VestibularMigraine

Pub day for John Cotter’s LOSING MUSIC, a memoir about developing #MenieresDisease and with it #Vertigo, #Tinnitus & #HearingLoss.

The excerpts I’ve seen are so beautiful and deeply resonant about the transforming experience of serious #ChronicIllness. The way you find yourself gradually and suddenly distanced from the mundane, or identifying with experiences others aren’t in fact having: yes. So excited to read the rest.

https://www.guernicamag.com/sound-shadow/

#NEISvoid #Bookstodon #Nonfiction

I was reflecting that since my drop attack, I’ve been feeling a lot like I did when I had been under-prescribed Betahistine. That being: like garbage…

And then it dawned on me that the other thing that happened after my drop attack was my GP swapped my Betahistine for something else.

🤔

#ChronicIllness #MenieresDisease #Vertigo #BrainFog #Fatigue

The #vertigo is easing, but my #tinnitus is obnoxiously loud this morning. Sounds like a hairdryer… #MenieresDisease

A reflection: I’m the wrong side of the frustrations I’m going to accumulate, so I can’t fully appreciate what not driving will do to my life; I’m yet to fall and do myself harm; I’m yet to pause before doing something, fearful that an unannounced #DropAttack may derail my plans entirely.

Instead, I feel hope.

I’m going to beat #MenieresDisease, and I’ll be so much more than it’s stolen from me; because it’s forced me to consider who I am, and find value in my foundations.

I earned a new Meniere’s merit badge today: First Drop Attack! 🙌

I was half way down the stairs when it happens, fell into the wall, and managed to get to the bottom without harming myself. For the minority of sufferers that experience them, they often manifest in the later stages. So on the upside, I may be close to being through this thing; the downside is that I can’t now drive for a while.

#MenieresDisease #VestibularDysfunction #DropAttack #ChronicIllness

Cada 7 de febrero se celebra el día mundial del síndrome de Ménière, para dar a conocer esta enfermedad tan incapacitante del oido.

https://somosdisca.es/dia-mundial-del-sindrome-de-meniere/

#enfermedadesraras #meniere #menieresdisease #ménière #ménières #ménières #discapacidad #discapacidadauditiva #disability #disabilities #disca #gentetitanica #Somosdisca #visibilidad #mareos #síndromedeménière #sindromedemeniere #enfermedaddemeniere #Salud

I'm searching for more info and people with experience of meniere's disease.

Wondering if my fellow #hachyderm citizens (or anyone) has suggestions other than following #neurodivergent (as it doesn't seem an exact intersection).

Also #menieres and #menieresdisease doesn't seem to get a lot of traffic.

Ya know, asking for a friend.

My good old #Menieresdisease is being particularly nasty to me today. It's not gone full throttle. It's just messing my head up just enough to make everything take twice as long. And I'm now exhausted.

Bastard.

I live with a chronic condition called #MenieresDisease.
It’s an ill-understood condition, but the layperson’s explanation is that the balance organ in my left ear is dying. In the last ~7 years, I’ve gone #deaf on that side, manage some level of #vertigo daily, and live with a commensurate amount of #ChronicFatigue and brain fog. It’s also invisible.
I don’t look ill or disabled, but I’m both.
Today has been rough.