I am living with chronic vertigo. I don’t know if it counts as an illness, but having this condition has made day to day living rather difficult. I feel strange all the time, there’s this constant swaying sensation, my head feels like it is wrapped in layers of gauze and on really bad days even my vision appears clouded. I can’t stand for prolonged periods when even sitting down doing nothing much feels like a drag.
I appear outwardly fine though, and even my family members forget that some basic actions that they think nothing of no longer come with ease for me. Everything I do, even holding onto, say, a plate, when I am doing the dishes, I am doing it with utmost deliberate effort because the internal swaying sensations I feel have me thinking I am going to tip over any moment and I will end up dropping whatever I am holding.
I think this may more for acute vertigo, but have you tried the Epley maneuver?
The epley maneuver is to treat BPPV- where an otolith becomes dislodged and then finds its way into a semicircular canal (normally the latteral canal). If it was causing vertigo it would have to be the posterior canal. Not to say it isn’t possible, but it is the statistically least common canal to happen in. Not only that, but the epley wouldn’t treat it. Even then, this strongly doesn’t sound like BPPV, whose episodes would last seconds to minutes. If the episodes are lasting minutes to hours it is a short list of other possible things. best case this is vestibular migraine of it was vestibular related. More likely this is central involve ment and the person needs to see a neurologist. I have seen patients like this before for balance accessments. We will do the testing on them(VNG and caloric testing), but then have to tell them to go to a different department because it isn’t part of the vestibular system causing the problem. I would push to see an ENT/neuro/PCP sooner than later because worst case is it is a developing vestibular schwanoma (non cancerous tumor) and the sooner the better to take care of it or at least monitor it.
Fun fact: The director of Mario Kart 8 had vertigo so bad that the rest of the crew working on the game used him as a test subject for the game to see when a level’s road was too twisty.
After rereading this in the morning/afternoon and not late night I realized my mistake. BPPV is normally the posterior, more infrequently the anterior, and to be true up/down vertigo only it would have to be both canals at the same time. The vestibular organ is odd. Either way, this whole scenario doesn’t even sound like bppv (peripheral) and is most likely something up line in the brain (central).
Go see neuro. Get an mri at least.
If seizures count as an illness, vertigo definitely does. I don’t get vertigo but I got mildly irritated once when someone was behind in the DVD clearance section of Walmart once and said “they need trigger warnings for vertigo now? What has society come to?” (it was a racing movie with lots of excessive dutch angles). I bet the whole aisle got distracted by my attempt at explaining sometimes these additions are just appreciated if not for some people being so obsessed with media freedums that they forget the human body exists.
I work with a guy who suddenly developed this in the middle of a call. I had to help him back to the office, stopping so he could puke a couple times. He was gone for a while and I don’t think he ever got rid of it.
Unlike the othe comment, this DOES sound like it could be BPPV, where something like the epley maneuver would work. Typically we would use the Semont-plus maneuver (same idea, slightly different). Or there is a fun half somersault maneuver the person could try on their own.
Bppv will be brief but intense episodes lasting seconds with lasting nausea for minutes and exasterbated by head movements. You will also see their eyes jumping or flicking (nystagmus).
Sympathies. Chronic vertigo is horrible, especially when it leads to nausea. Hope you find an effective treatment soon.
If I asked people what subaoritc stinosis is, there is absolutely no way the average Joe or Jill would understand what that is or what it causes. So, that.
deleted by creator
If you’re a recovering alcoholic (or someone generally trying to minimize risks from alcohol) and you’re friends or coworkers with people who regularly booze, probably many of them cannot consider how their social actions might create an unhealthy environment for those around them.
@rip_art_bell Yes I have Fibromyalgia and not many people know about how that works.
Even most doctors don’t understand it! Sad hooray!
I was gonna bring this one up, not because i have it, but my mother does. I barely under stood it after it was explained several times. Hardly no one knew what it was when my mother was diagnosed, some of other docters havent had even heard of it according to her.
@Breezy Yes sadly most doctors haven’t heard of it and if they have some don’t think it’s actually a thing. I’m very lucky in having my mum that also has the same condition so it’s nice to know i’m not the only one going through things.
Also no one knows if it is genetic there has been very little research about it let alone in that area. Glad you came to comment hope your mother has learnt to deal with the pains, fog and tiredness.
I hear about this condition a lot. May I ask how it manifests?
@shinigamiookamiryuu It’s really unknown how Fibro forms, to be put simply it’s your body sending the wrong signals to your brain telling your body it is in pain (This is only one thing in fibro but a big part of it). Sadly there isn’t a easy way to test for Fibro, you have to be tested for many other things before you get to the possible diagnosis but as @xmunk mentioned most doctors don’t understand it, some don’t even think it is an actual thing.
Hypothetically, could dogs be used to diagnose it? I know dogs’ smelling ability can detect depression, cancer, and DID. Why not fibro?
@shinigamiookamiryuu I wouldn’t say you couldn’t but is a strange set of symptoms with things such as our pains as it can be effected by stress, mood, weather or even temperature. A dog could be trained to detect it as well as even help with service dogs but that’s a lot of money and research. As well as Fibro is very misunderstood as we aren’t even sure how it comes about, Trauma maybe, Born with it, possibly.
Based on your particular description here, a part of me wonders if it can be placed on the same spectrum as multiple sclerosis (something I am all too familiar with). If so, it might definitely help it be understood, as what people know about MS seems like it would serve as a good point reference for fibro.
@shinigamiookamiryuu It does have similar things to MS yes
One theory I’ve heard where fibro comes from, is that the body is always in fight-or-flight mode (for varying reasons), it never properly switches over to rest-and-digest mode for an extended period.
So, it could be that someone with fibro just smells like someone taking an exam, but like, even in theoretically relaxed situations.
It sounds like a good theory, but according to that theory, where would the pain come from? I don’t think I’ve ever been struggling on certain answers on an exam and suddenly it hits me (excuse the pun, I couldn’t resist).
I’ve basically only watched one video on this (of someone who’s supposedly medically trained, has fibro themselves and published a book about fibro), so you know, don’t think I’m an expert.
But well, according to this video, one common cause for pain in people with fibro is muscle tension. She said something like, what’s normally considered dangerous levels of muscle tension, where you’d actively medicate people in a hospital, that’s normal levels for fibros.
Obviously, you won’t get muscle tension in an exam, except maybe in your writing hand, because you’re not really using your muscles and exams tend to be short enough anyways.
Another suspected cause is that during fight-or-flight, your body releases testosterone, which inhibits, I believe, oxytocin production, which means your body slows down long-term regenerative processes. So, quickly closing up a bleeding wound is on schedule, but making sure your joints are regenerated before the next fight-or-flight situation, that’s lower priority while you’re supposedly still in a fight-or-flight situation.
People think I’m a drunk because of my rosacea.
Those are two completely unrelated aspects of myself.
I came down with Type 1 Ligma as a junior in highschool. Most people don’t even know what the disease is
Woah dude totes lucky to b alive?!
Fine, I’ll bite
sigh What’s ligma?
You will bite? Not eat?
I will bite, and I will bite down hard
This is the only ligma-related meme I ever laughed at.
Thanks Pipey.
Damn, Ligma. I’ve heard that’s rough. 😂
deleted by creator
What are the chronic illnesses, if I may ask?
Any type of neurodivergence is not graspable for the majority of people, as it would require high skills to think in somebody elses shoes.
Debilitating chronic fatigue is called being lazy and as I just found out very recenty I have cerebrospinal fluid leaks which cause these issues. Hope it gets fixed soon. And shoutout to the doctors trying to tell me it is in my head and doesn’t require urgent care.And shoutout to the doctors trying to tell me it is in my head and doesn’t require urgent care.
Fuck those people… >:|
I am not sure why this profession believes every medical problem is easily reliably diagnosable and the rest must be in the brain like some pre-renaissance understanding of human anatomy.
I used to have costochondritis which was an inflammation of the cartilage in my sternum. It would feel like a pressure on my chest that wouldn’t be relieved until I bent backwards to stretch and “pop” my chest. So occasionally friends and family would see me stretching and wonder wtf I was doing
I’ve had this too. Sometimes when I would stretch to crack my sternum, I would get this wave of heat and eventual pain in my chest. So it was a gamble every time I felt that I had to crack it. It’s been a lot better in recent years but it never really went away completely.
Yes, same thing would happen to me! It was a risk trying to stretch it out because if it works the pain would go away but if it didn’t pop, then the pain would be worse than when I started. Sorry you’re still going through it. My doctor recommended NSAIDs for the pain but they didn’t help me too much. Eventually the problem went away and I luckily haven’t had it come back
I had that for a few years. Scary at first, then mostly just annoying to explain: yes I’m having chest pain, yes I’m sure it’s not a heart attack, yes my chest is going to make a noise.
Had mono as a kid. Parents got mad that I was being lazy because I didn’t get out of bed for two weeks.
Almost my whole class at school got mono one time. I remember there were so few people in my class that we were allowed to just not do anything.
Had mono in uni, for 7 fucking months. Like any good idiot, I wrote it off as my period first, then just needing to chill a bit. Then I got worried and saw a doctor, who said “mono almost never lasts 2 months, we’ll run some tests”. And meanwhile I should work on my stamina and keep training.
After half a year I got a different doctor, who did the mono test and tadaa. Told me to sit and do nothing, doctors orders. 6 weeks later it was gone.
Thank you. Long Covid is exactly what prompted me to create this post. I’ve been having symptoms for 15 weeks (insomnia, brain fog, exhaustion). My primary care doctor was useless.
I’ve since discovered a lot of literature on my own that has validated my experience: that it’s typical for general doctors to have no clue, they’re still working on finding good biomarkers for the condition (it’s not easy to test for), and I’ve learned a bunch about PEM (post-exertional malaise) and self-pacing / energy-management techniques to prevent the push-crash cycle that people with Long Covid experience.
Did you take an antiviral like Paxlovid when you had COVID? Apparently they’re supposed to reduce likelihood/symptoms of long COVID, but there’s not a large amount of published research about it yet.
ADHD+Autism
Very annoying. Most ppl already struggle to understand ADHD. Now try to explain autism or what it feels like when you have both. But then again, I also don’t fit in with the autism crowd cause my autism is just light enough that I recognize my mistakes but I can’t fix them.
I mean tbf how could someone understand autism if I don’t really understand it myself. How could I, I’ve been born with a warped brain, I have no comparison.
You can kinda understand through extensive observation, but there’s only so many comparisons you can make since every person is unique.
I have ADHD, and most people _mis_understand it. They are familiar with some of the symptoms, like that it’s hard to focus, but completely unfamiliar with others, like that having an hour appointment in the afternoon can basically block out your entire day. I rely on and even thrive with medication, but there’s a nationwide Ritalin shortage that has basically kept me from working for the past month while I figure out a new medication.
Sadly psychiatrists and counselors don’t help here. They see one symptom and think “oh let’s add ADHD to this person’s diagnosis list”. And they wonder why the ritalin shortage exists.
Wait, really? I just posted a comment about how it’s better to talk to a professional instead of self-diagnosing. Your comment makes me question my other comment.
Yes really. It largely depends on the place, but I can absolutely positively confirm this is how many of them operate. Not just with ADHD either. I’ve known people with TBI whose TBI is treated as bipolar on the sole basis that people hear bipolar and think mood swings. There’s one person I know who was put on two lithiums a day for it and then yanked off of it and had to endure a whole month of hallucinations, only to be put on half of the original lithium dose again, all because they didn’t properly insert TBI into the diagnostic list and thereupon this one psychiatrist just assumed it was bipolar (when there are differences in how mood swings from both manifest; TBI is rapid fire and bipolar is more like a long storm).
Every time I mention psychiatrists on this website, I get hated on, but I know my experience and the things I say are not going away. They and counselors DO overstep, they DO take on each others’ roles and functions, and they DO conflict with each other at times. Glad to know though the same people here who say the US health system is shit also claim the psychiatry system is somehow a perfect well-oiled machine, free from people acting outside of their jurisdictions.
in my experience, there’s not even as much consistency therapist to therapist, psychiatrist to psychiatrist, as there is in the rest of the medical field.
I love my psychiatrist, but what I love is that she’s very much about staying up to date and knowing what she’s prescribing, and probing to see if it’s working (I am a terrible judge the worse off I am. no, really, it’s fine, I can just wake up a little earlier and add a panic attack to my morning routine, don’t change my drugs. huh…ok, since we upped the dose, I haven’t had a panic attack, I guess that was a good idea.)
That may have been true in the 80s and early 90s.
It’s still true. There are soooooo many people with diagnoses that don’t match what they actually have. And some consulted professionals are way too quick to diagnose these things, especially in the child psychiatry industry, especially with child psychiatrists (who often put too much emphasis on one family member), especially with things like what I described. It’s far from an archaic experience.
At first I thought “no, but I’ll read the comments. Maybe it’ll help me understand my fellow man.” Then the top comment was ADHD and I was like, " oh yeah I do have that lol."
having an hour appointment in the afternoon can basically block out your entire day
I’m curious…what do you mean by this? I don’t have ADHD, but I do find it very difficult to relax if I know I have to be somewhere later in the day. Is it anything like that? Or is it something else? Just wondering!
Thankfully I am not that bad but I absolutely relate. One simple task turns into three or four and you often forget about the original task in the first place.
Here is an alternative Piped link(s):
https://piped.video/2fYg5hSgtug
Piped is a privacy-respecting open-source alternative frontend to YouTube.
I’m open-source; check me out at GitHub.
I’ve heard it’s related to time blindness. Basically I can’t become invested in a project if I know I’ll have to break out of it shortly. So if I have an appointment at like 1pm, I either have to start my day really early to make sure I can get like 6 hours of work done before noon, or start my day after the appointment and work into the night.
It’s a lot easier when I’m on Ritalin, but it’s still difficult to plan around.
That’s basically why I always schedule any appointment for early in the morning, if I can.
people misunderstand it
are familiar with some of the symptoms
On that note, I want to mention that I have seen and heard of a lot of people (mostly online) who self-diagnose with ADHD. Believe it or not, extended social media use (I’m not sure if Lemmy falls into this, it mostly refers to places made to be addictive like TikTok, Instagram and others) has apparently been shown to cause some symptoms of ADHD. I’m just using this comment to tell anyone reading it: if you think you have ADHD or any other mental health issue, talk to a professional, don’t self diagnose. It can be destructive to yourself to think you do or don’t, without checking. If you have symptoms, talk to a professional. And I’m sure OP whose comment I’m responding to will agree with me on this. Thank you. And you will one day thank yourself too.
Yes, I agree, if you think you have it, you should get in touch with a professional. If you don’t have it, you may have some other condition that can be treated, or there may be ways a psychiatrist can help. And if you do have it, treatment can make a huge difference to your quality of life.
Appointment inertia is the worst. I can’t do more than one appointment in a day. It’s not like a cute lil ‘oh it’s so hard’ thing, I literally cannot do the cognitive processing required to do more than one appointment a day.
Came here to see if anyone had mentioned ADHD. So much misunderstanding. The name of it doesn’t help either.
Sorry to hear about the Ritalin shortage. Going without meds for more than a week super sucks. (I’m on vyvanse though).
Call it EDD (executive dysfunction disorder) which is a part of ADD and you’ll find more people want to know what it is and don’t just assume.
EDD sounds similar enough to ED that people might get the wrong idea.
With that being said, I’m not going to use the term extensively.
It’s super frustrating when people are like “oh sure I know about how ADHD works”, when in reality they skimmed the webmd or wiki page for it that mostly just enumerates various ways in which it may present, without even registering that the implications of how the symptoms affect my life.
The other one that people never understand is the hyper focus side of ADHD. If I get rolling on a task: 1, don’t stop me I will not get back on task. 2, I will forget that planet earth exists, food becomes an afterthought, and breaks, even restroom breaks simply don’t happen.
having an hour appointment in the afternoon can basically block out your entire day
I feel this bullshit so hard. Nobody gets it
Chroma disease, people don’t get that when I’m burned out for the day it won’t help to take a short break. Immunosuppressants are a bitch.
Edit: shitty Phone. Yes Crohn’s
There’s threes of us here!
Crohns? That’s what I have and “invisible disability” is an apt description.
My Dad lived with diagnosed Crohns for 25 years. We covered for him as a family however we could. But you just don’t get how debilitating it can be unless you’re intimate with it.
As a kid I thought my dad was lame and a bore for not doing a lot of things I wanted. As an adult and having cared for him for most of the last 10 years, I realized he was a warrior that achieved more than any other in his body could’ve.
