#Vestibular Migraine

[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!

[ribbitflings]

this is going to be the most specific thing, but anyone with migraines or epilepsy experience achromatopsia or monochromacy at any point during the events?

achromatopsia is a documented phenomenon with migraines, but i believe that only pertains to grey monochrome vision and not other monochrome colors

[gabbagepatch]

Having an illness is feeling like nothing is going right in life and you live in hell until a doctor actually takes you seriously.

I've been so depressed and hopeless lately but my PCP actually took me seriously today and is committed to my health. Totally turned my mental state around. I wish all doctor's appreciated how much influence they have over their patient's mental wellbeing. It's not like anything miraculously changed during that appointment, I'm not cured or feeling better. But just knowing that someone actually wants to help made such a world of difference.

[litoria-caerulea]

To any of my vestibular migraine friends: pressure reducing earplugs!!

I’m not sure exactly how each person is affected as there are a range of symptoms even in specific types of migraines, but for me most of the time I feel like there’s pressure in my ears, basically like how you feel on a plane but all the time.

I’ve been looking for a solution because obviously it’s very uncomfortable and fucking hurts, and recently I’ve tried pressure reducing earplugs that are meant for air travel. They’re not perfect but it reduces a LOT of the feeling! Plus they’re fairly inexpensive, mine were $8.50 CAD but I’m sure you can find them cheaper. The package says for best results they can be used a maximum of 5 times, but of course my broke ass is using them until they’re completely useless. (For anyone complaining about the sustainability may I remind you billionaires are the ones majorly fucking over the planet and medical devices are necessary for us.)

Just sending the recommendation out there since I know there’s not a lot that helps chronic migraines and doctors often don’t know what to recommend. I looked them up on my own after I saw them in a pharmacy and wondered if they’d work or not.

[celesticadream]

house md is so cathartic to me when im initially going thru serious illness/injuries, every time. i can’t explain why but i always rewatch during those first few months and if someone can relate pls explain it to me lmaooo

it’s like deeply satisfying specifically if im processing that its happening to me- also while i’m getting lots of tests and dumb ER visits/hospital stays and injuries and doctors etc etc

[littlefeatherr]

Just when I thought migraines couldn't get any worse - vertigo!

[cyanomys]

So actually I was sick the whole time

I was thinking and it’s kind of insane how I can trace back through my life all the way to early childhood and see the warning signs that I now know are migraine.

Like I remember before I would have my vomiting spells as a child I would yawn a lot but didn’t understand why. Now yawning is a migraine prodrome for me. There’s something called cyclical vomiting syndrome that is common in children who grow up to have severe migraine…but everyone just told me I had a nervous stomach.

I would always be sick at night or after doing something really stimulating like shopping or going to a movie. I hated going out to eat in the evenings because I would always feel really sick on the way home. I remember the car lights seeming really bright and painful…. Guess what triggers my migraines now?

I was always super prone to motion sickness too and it just got worse the older I got. Motion and eye movement are some of my biggest triggers now.

I got bad “tension headaches” in junior high and started having weird disorienting sensations before and during them in high school. Doctors and family told me “some women just deal with headaches” and just told me to tough it out. Then they thought I had MS but I didn’t. Twice now I’ve been MRI’ed for MS lol

And for the couple years before my Migraine became seriously disabling I was having all these ear symptoms that doctors couldn’t figure out, and went through long periods where I could eat nothing but the same few foods because I was nauseous all the time. My motion sickness got so bad I couldn’t go swimming anymore or be in the car for more than an hour without taking benedryl.

When I got significantly worse seemingly all at once in 2022 it seemed so sudden and out of the blue but really I’d been working up to this my entire life. I just didn’t know what to look for

Idk why but it only just clicked for me that I was sick as a kid from literally the same thing that disables me now. I knew all of this but never drew the line so clearly. It just hits different idk

And god it’s so much worse that people put me down for it and told me I was making it up when it’s the same thing that has completely turned my life upside down now. I wish I could go back in time and show my family and doctors what has happened to me now and see how they feel about continuing to dismiss my concerns and make me feel less than for my illness.

[dovetart]

So, I might’ve been fired from my job because of my disability but I’m not quite sure because they’re not communicating with me.

So, long story short (not really, I accidentally wrote a lot here lmao), I got a survival job at a grocery store pushing carts. At the time I wasn’t really fully aware of just how physically disabled I was. I knew I had chronic pain and fatigue but for some reason I thought taking such a physically taxing job would be ok? Idk maybe I was thinking more of my mental disabilities, thinking it could lessen the barriers that I have with those disabilities (which it didn’t lol my mental health is always bad but it definitely got worse in a few ways while working that job). Or maybe I was just reinforcing that toxic mindset that’s been hammered into me my whole life to just ignore my pain and push through it. Like, I needed that job to be able to get off the street and get an apartment and I was so desperate I decided to ignore the fact that it would be bad for my mental and physical health.

But after working this job I finally cannot deny it anymore. I’m disabled. Which, looking back on my whole life, it should’ve been obvious because I was always struggling with pain and fatigue. I’ve never been able to have a job for a long time. I can’t stand for longer than 4 hours, even then I’m still in a lot of pain. And I don’t have a car so I still have to muster up the strength to walk back home and then pass out on my bed for the rest of the day. The only way that I have survived this far is by taking copious amounts of pain killers so then the pain in more of a dull ache that I can ignore better.

And after a really bad day of work; a coworker yelled at me because I was resting before clocking out so I could have strength to walk home after a 5 hour shift, I cried… of course… and since I was already struggling emotionally that day I went home and had a psychotic meltdown where I almost ended myself. And after that I was talking to my therapist and she agreed that I shouldn’t be working. That I should take some time off. That my life and health was more important than this job. And, me, who is already someone who doesn’t like corporate companies and (thanks of years of therapy) now knows my worth, of course agreed with that and talked with my career counselor to work things out with my job so I could take the week off. I specifically told her that I needed a week off and then after that I was planning on talking to management to try to get accommodations and then work on getting onto disability while still working so I can still have an apartment. Then after I get on disability then THATS when I would quit, y’know?

But, evidently my career counselor told them “I don’t know how long they’ll be out for” even tho I clearly told her a WEEK. And, after just a couple days, I was talking on the phone with my doctor, trying to get a permission slip to take the week off (which, unrelated, why does it take so long to get something like that when I’m in a crisis and needed it right there and then 😭) when my work called me. And since I had used up all my energy that day talking to both my therapist and doctor over the phone, I didn’t call them back.

But… erm… I wasn’t scheduled this week. And I was like “ok, maybe they got my doctors note and that’s why got off this week also.” But I haven’t been scheduled for next week either… and I usually get my schedule for the next week by now. And I’m starting to think that phone call I missed BECAUSE I WAS TALKING TO MY DOCTOR was them calling because I missed my shift that day and it might’ve been them telling me I was fired because I missed it.

And it’s starting to make me nervous because I legitimately do need money. And I’m starting to get scared that I will be homeless again. I have no where to go if something like this is happening. And I think it’d be hard to get another job especially since I now know that I legitimately can’t work because of my disabilities.

And my new social worker… omg it’s so unprofessional… I was supposed to start meeting them back in July, but I haven’t heard ANYTHING from them and it’s September now. My therapist even tried to get in contact with them, said they would contact me, but they STILL HAVEN’T!!! And it would be really nice if I could get a social worker because that would help me out a lot. Like I definitely can’t fight to get onto disability all on my own, I can barely make phone calls!

And I’m not going to lie, I don’t think my career counselor or doctor realize how bad I’m doing right now. My therapist does and it feels like she’s the one always trying to get in contact with those other "professionals" to tell them to do their jobs because what I'm going through is legitimately effecting me horribly. But, I'm too good at pretending I'm doing fine when in reality I feel like I'm dying. I think that's why I was denied disability last time, because I masked too well during my evaluation smh Feel's like no one will take me seriously when I tell them how much I struggle.

Worst part is, is that I don’t even know what physically disability I have because I’ve been undiagnosed my whole life with like everything that I have because my parents refused to take me to the doctor as much as possible and never ever let me get a therapist until I was forced to because I ran away, tried to end myself and then was sent to the hospital by the police. What sucks is that all the experiences I have had with doctors and medical environments have all been quite traumatizing and filled with medical malpractice and gaslighting, so I’m not even sure my doctor will believe me. And idk if I would even trust her. No I don’t. I don’t trust most medical professionals. In fact I have had blood tests taken with this doctor already and my results all “came back normal” so “there’s nothing wrong with me,” right? (There is definitely something going on with my body here…)

And, I’m still not sure if I’m fired or not because they don’t communicate with me. Like, no offense, but l feel like they should put more effort than just one phone call that’s easy to miss, no voicemail or anything, to tell me that I’m fired. But what else am I supposed to assume when they’ve gone radio silent on me? I’m going to wait for the end of the week to see if I do eventually get a schedule… but after that I’m for sure contacting my career counselor to figure things out and start working on getting a new job.

I’m just mad that I possibly lost a job because of something I can’t control. But a part of me isn’t that mad because that job was taking SO much from me.

Idk but I’m just going through a real shit time right now. I mean, when am I not, right lol I’ve been struggling with this my whole life, and I’m tired of fighting. Part of me thinks I would be better off dead than having to continue to try to prove to others that I’m “disabled enough” to get accommodations. I really don’t want to be homeless again. Trying hard to survive today and focus on one day at a time.

Sorry, I don’t usually make posts like this. I just needed to get this off my chest somewhere. Thanks if you read all the way through.

[tiddykittylikesskittles]

howdy dizzies and headachers

for the first time since I was a VERY small child (such a small child I don't even remember it) I got medicine samples from a doctor. I saw a migraine specialist today and she wanted to start me on a certain med, but because my insurance likely wouldn't cover it until I had tried two other meds first (despite there being no evidence that those meds even affect vestibular migraine) just gave me the samples today. It's an acute medication, so I took it when I got home. I think I feel better? could be a placebo, I've had similar reactions to meds before. I feel slightly better in a way I can't quite pinpoint, and then the effect wears off after awhile. I don't want to get my hopes up, especially since this is a one-and-done type med that doesn't have to build up in your system. I did only take half the dose at the advice of my doctor. Maybe the full thing will be more overt?

[chronicallye]

I'm not just overdramatic, I'm also overstimulated

[ribbitflings]

does anyone notice they're more prone to seizures when there's storms around

[gabbagepatch]

These steroids have made my symptoms so much worse but I'm determined to see it through to the end. No doctor is going to call me noncompliant. I'll comply so fucking hard.

[hopelessly-dizzy]

There are Three of You

So I have vestibular migraine. This is a condition that rarely has the midgraine pain (it can come, though), but instead you are intensely dizzy. I've been dizzy now nonstop since April 11. I can hardly see (thank you, touch typing class in 9th grade so I can type), hardly read, need a cane to walk... I feel like I'm missing out on most of my life. We're trying a new med combo, and I haven't had a day without dizziness since.

[hermeticbridgetroll]

Me: there is no reason I should be this dizzy, is it gonna rain today???

Weather app: Showers through out the day! Chance of rain 100%

Me: I hate being a walking weather station.

[i-am-the-oyster]

Do it dizzy

[cyanomys]

Letting myself be angry at and grieve my illness is a form of healing

I habitually used to call myself lazy or unmotivated when my body fails me or when I listened to my body, when the true reality is that my motivation vastly exceeds my physical capacity. I love life. I love doing things. And then I slam into my limits like a bus into a wall

I learned to blame myself because neither I nor my family were prepared to accept the truth. Because the truth is fucking depressing. Grieving sucks. Accepting my health situation is so much less inspiring than thinking “if I just want to be better harder I’ll get better.”

But blinding myself to reality has caused me to make myself sicker. So much sicker actually. I don’t know how much of my current disability can be attributed to my pushing myself too hard, and what would have happened if I hadn’t. But I’m certain it wouldn’t be as bad.

Fuck it. Having my conditions (vestibular migraine and etc) is a shitty hand to be dealt, and I may never be able to do all the things I wish I could do, and I may be disabled forever. That’s it, I said it, the end.

But that doesn’t mean I’m helpless. Now I have to live in this body and figure out how to make a life with what I have.

If I live within my limits I will a much fuller life than continuing to push myself until I crash over and over, each time slowly chipping away at my abilities and shrinking my world a little more. If I am careful maybe I will even be able to gain back some of what I lost. Patience. I have to accept, and be patient, and be grateful.

Now instead of telling myself “just try harder!” I can say “what compromises can I make to set myself up for success and health.”

Maybe I won’t ever have a “real career.” But I can derive meaning from my hobbies, and maybe even do a little part time work from home someday. I can be grateful for my husband being able to work and support me.

Maybe I won’t ever be able to play roller derby or be a hiker. But I can go on a walk most days and dance a little in my living room. I can be grateful that I am able to stretch my legs.

Maybe I won’t ever be able to go to conventions or play games at busy game stores. But I can play TTRPGs with my friends online, or have friends over for board games. I can be grateful to have a wonderful online community.

Maybe I can’t go on vacations or fly in a plane. But I can go on a picnic with my husband and dog. I can be grateful for good food and that nature is so accessible to me.