#menieres disease

[brennacedria]

Today's been miserable thanks to menieres. I'm finally home and I've gotten my medicine, and Brian's fixing me some soup cause I can't really stomach anything else. As soon as I'm done eating I'm going to sleep on the sofa until Brian gets his shower, then when he's out I'll get my shower, get cozy pj's, then actually go to bed. Probably.

[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.

[bluenoo42]

Shoutout to people with balance disorders

I'm currently at home and not able to work today because of a flare-up of my balance disorder (bilateral vestibular hypofunction/loss). Apparently, the flare-up is happening because I had COVID-19 a few weeks ago, and it has caused my brain to de-compensate for my lack of vestibular function. This is (according to my doctors) super common for people with this after they have any sort of illness.

Because it's not a painful condition, I think people forget how debilitating balance problems can be. The vertigo, the nausea, the blurred vision whenever you move your head, the falls, the people thinking you're drunk, the difficulty explaining your symptoms because they are super weird, not knowing whether or not you need a mobility aid because your legs are fine but you still can't walk in a straight line.

To anyone who has never experienced this, trust me when I say it's really bad. To everyone with a balance disorder, you're all legends and super cool, and you're not alone with this. To all the disabled people out there, don't forget balance disorders this disability pride month!

[disneytrampstamp]

HEY GUYS

im raising money for my medical bills so I can get the forms together that I need to apply for Disability

I have

-Autism + ADHD + OCD

-Menieres disease (vertigo/nausea/vomiting)

-lumbar disease (2 vertebrae in my spine are touching)

-C-PTSD & a bunch of childhood trauma involving abuse/drugs

I feel absolutely insane listing what makes me disabled like that, but I am desperately in need of funding. I cannot work & therefore I cannot raise the money I need to apply for Disability or the appointments needed from specialists to write it all down.

Below is a link to my fundraiser - please share

& if you��re suffering from any or all of these things as well, just know I see you and my asks are always open xx

Fundraiser: https://gogetfunding.com/help-me-pay-for-my-autism-assessment/

[snarp]

Tentative diagnosis = labyrinthitis in left ear compounding the usual stuff.

They had me do the Epley Maneuver in-office, scheduled me for a two-week follow-up + a VNG/balance test, and recommended:

* sleeping on a wedge pillow

* wearing an OTC neck brace to remind me not to move my head too much (am currently keeping my headphones around my neck for this purpose)

* taking ativan and meclizine more often (Note To Self: probably need to be off both of those for at least 18 hours before coming in for follow-up/VNG)

As I was waiting for the doctor to come in, I heard her apparently discussing my chart with the nurse and someone else out in the hall. These phrases were involved:

(nervous) "she had a BRAIN tumor"

(depressed) "I could NEVER work in oncology"

(frustrated/resigned) "could be EITHER"

Judging by the neurology talk, I think the "either" referred to the question of "which medical problem on this chart is probably actually causing the vertigo episodes."

She ran me through some tests for stroke symptoms - which, on reflection, I think this office does every time I come in, regardless of what's actually wrong. Is this a standard ENT thing, or is there some kind of note on my chart...? I know that asymmetrical VNG results can be the result of a stroke, but the guy who performed the first one seemed confident that my balance issues were mostly an inner-ear problem: like, I'd relatively-recently had my 6th? 7th? cranial MRI showing no sign of stroke, there was visibly something wrong with my otoliths on both sides, AND I'd just tested positive for excess blood potassium (endolymph sodium/potassium balance is important).

She also seemed disproportionately relieved to hear that I already had a cranial MRI scheduled for next month. I'm wondering if the staff of this clinic has had traumatic experiences with patients unexpectedly going into seizures or strokes during exams. Like, even at the hospital that Dad keeps suing, people do not so consistently display this much visible anxiety about my neuro situation - this doesn't feel like it's about the possibility of a malpractice suit.

I guess asking people to move their heads and necks around in unusual ways could trigger seizures...? The VNG goggles might be able to do it, too - but I'm sure it'd be especially scary to have a patient start seizing during the Epley Maneuver, while your hands are on their head. Even if they didn't fall, it would have to feel, at least for a second, like you'd caused it to happen. And since neurological conditions in general are underdiagnosed in Appalachia (shortage of neuro specialists), I could imagine ENT clinics in particular seeing a lot of patients with no idea that their "dizzy spells" might actually be seizures.

Phone call:

"hello, dr name's office -"

"okay this is snarp I have an appointment in a minute but I had an incident and I'm gonna be a little late"

"uh"

"sorry I just threw up all over myself I gotta go"

"ok"

[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.

[cosmic-ships]

Made the mistake of being outside today. :/ I have a terrible heat headache x.x f/o please run me a cool bath and put a cool washcloth over my head to stave away the vertigo ;;

[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.

[watercolourferns]

Reframing the "I'm exhausted, why am I so lazy??" thought I've always had to "I'm exhausted because I have fibro and all I can do is manage it for today" has lifted a huge weight off my shoulders.

I wanted to go get tuna to make some spaghetti thingy Fiancée bought, but I can't. I'm literally falling asleep standing up. So I was like "I'm so fucking lazy, just grab your cane and go!", but then our inner protector stopped me and made me realize... it's not laziness. That's just how we cope, masking it as laziness. It's tiredness, pain, and a mild agoraphobia we get when we have brain fog, be it from mental issues or from the Fibro or the Meniere's (yes, the pain from Meniere's can give you brain fog as well).

It's making things so much easier to handle now that I know what it is, it's scary. It's like there's impending doom, and I hate that feeling... but it's also very liberating. Because I understand myself better and I can be less harsh on myself... I'm just scared others won't be.

[brennacedria]

At least when they made the oral dissolve zofran someone was like, "hey, we're making this to dissolve on ppl's tongue. The least we can do is put some sort of flavor"

Like, it's basically a red antacid flavor w/e the chalk, but anything is better than bitter dissolving pill "flavor"

(same for cambia for migraines -- it's a powder form of Diclofenac that you mix up like a bc powder. It was always kinda minty)

[solarsleepless]

my tinnitus loud as fuck!!! girl shut up!!!

[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.

[a-lil-perspective]

Crosshair having a Problem™ with rides is an interesting take.

Thank ye! He is the problematic one of the bunch.

Like, obviously he’s not afraid of heights at all BUT I like to think that gravity still messes with his system from time to time. I’ve always liked the idea that Crosshair suffers from vertigo to a degree, and so amusement park rides or even Tech’s flying can shake that up in him. I think he probably looks like a drunk stumbling off afterwards LOL. Maybe his tummy gets a lil sick too idk. But it’s mostly neurological/vestibular. That’s how I am! I have a stomach of steel and not afraid of heights, but g-force ignites a really strong episode of vertigo and I have to sit/lie down. XD Worth it though. XD

Anyway don’t tell anyone but Crosshair is holding onto Cyare afterwards. XD

[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.)

[neurocute]

I haven’t seen a flag for Ménière’s Disease anywhere before, so I made my own! Feel free to use. Credit is appreciated but not required, and anyone with Meniere’s can use it!

IMAGE ID - The flag in the center has nine evenly-spaced stripes. In the center of the flag is a simple white icon of a side-view of a person's head with a black spiral where their brain would be. From top to bottom, the colors are saturated medium blue, medium fern green, desaturated greenish-yellow, light yellowish-red, and off-black. The colors are mirrored below that strip, starting with light yellowish-red. The flags on the left and right are the same, but without the icon of the head in the center. /END ID

Color meanings below:

Blue represents hearing loss, and is colorpicked from the Deaf flag.

Green represents tinnitus, and is colorpicked (with slight variation) from this tinnitus flag.

Yellow represents vertigo.

Red represents inner-ear dysfunction and endolymph buildup.

Black represents sound sensitivity, and is colorpicked from the misophonia flag.

[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.