Cfs haver here - the isolation that comes with being too ill to be part of regular society versus not having a conclusive reason for your sickness is such a strange and unique loneliness. One that’s hard to express. I’m so happy you have a wonderful supportive community around you x
I had chronic Lyme symptoms for about 10 years. The worst part was being sick, but having a bunch of doctors tell you you couldn’t be sick was probably the second worst part.
OMFG YOU TOO??? i've literally never met anyone else with this experience before??? seriously whenever i explain my medical situation people think im either making stuff up or am just overreacting to migraines?? i'm so happy i'm not alone in this experience, let alone that one of my favorite content creators also deals with this shit
My partner is a neuroscientist, and I remember them talking about how many or the things you describe (balance, body temperature, hunger) are in one form or another linked to hypothalamic function. I know it isn't much to go on, but if you have the opportunity to take a closer medical look at your hypothalamus, it might point your doctors in the right direction. I should emphasize that neither me or my partner are medical doctors, just a couple of nerds with phds. Stay safe. I hope you solve your mystery and that the solution is some mild drug and a headpat.
I had two vertigo attacks in 2022 which resulted in prolonged hospital stays and needing to re-learn how to walk in a straight line. It was caused by low blood pressure in my right inner ear; why it suddenly occured, nobody was able to tell me. I thought I was going to die when I first woke up and fell to the ground during my first attack. That fear is still with me sometimes when I feel dizzy or light-headed in the morning. I hope that you will find a doctor who can help you. You deserve to be okay and live a life without fear. You are so strong, please remember that.
@@mongeeman It doesn't sound bad. Knowing that there are people who share the same fears and have the same struggles as onself is almost comforting, in a way? You know that you are not alone. I wish you a peaceful life, take care!
I had an issue during my shower about a month ago, (august), I was dizzy and nauseous, during my shower I felt my hearing get kind of muffled, I knew I only had a few minutes to grab my towel and rush to My bed as I collapsed wet and bare. I can sympathize with you in this regard, I'm chronically ill and I never realize how fragile I am until I can't push myself any further with what im doing, please take care of yourself to the best of your ability, I may not know you but I care about you ❤
I'm training as a cardiologist in the UK, you might have a disproportionate tachycardic reaction to hypotension (a drop in blood pressure) which can be brought on by orthostatic changes (standing up too fast, quick changes in temp etc). I see other commenters have mention POTS this comes in differing forms from neuropathic (spinal cord injuries that cause blood to pool in the feet and drop your blood pressure) to hypovolaemic (low sodium intake, diarrhoea and vomiting). Ask your doctor to rule out Ehlers-Danlos syndrome since that's an alternative possibility. I'm sceptical of making a diagnosis of strangers over the internet, but there are some conservative measures you could try, for example increasing your salt intake or using compression socks. If these are ineffective, your doctors should look to drugs such as midodrine or Ivabradine. POTS can also just go away on its own, (although this seems to happen more in peads). I hope this is of some help, thanks.
I've read more than one account from doctors who see a lot of trans/queer people anecdotally noticing that trans people having a much higher likelihood of also having some combination of autism, ADHD, POTS, and EDS. There's theorizing that it has to do with MTHFR SNPs, poor methylation/high homocysteine, and that methylated B vitamins could potentially help. A couple times I've seen tiktoks from trans people that have something to do with being flexible and I'm like "please, ask your doctor about the Beighton Score"
It's wild that you mention this because I had a very similar experience to her when I was younger, and it turned out the blood pressure thing was my issue. Upping my salt/mineral intake (partially via a water additive that tasted like licking a rock) brought me from "getting extreme vertigo and losing consciousness every time I take a shower or stand up quickly" to only occasional, relatively milder bouts of vertigo. It's not quite night and day, but my life is a lot more livable now.
I was a medical mystery too. I was young, so I wasn't told most of this, but my IGE level was so high that it was guaranteed bone cancer. Except... I didn't have bone cancer. After *years* of testing, it was discovered to be a dustmite allergy, and my only response to that allergy is that I break out in hives. Quite a big scare all for an anticlimactic conclusion, one I am VERY thankful for, and my parents were thankful they didn't have to tell me that I was dying.
If the compression socks help, compression leggings may do wonders. They did for me with my pots to the point where I can’t really go without. I really relate to all this especially the existential dread over summer. Medical limbo sucks ass. Sorry you’re going through it too
So apparently there's a decent amount of overlap with ADHD, autism, and trans people. There's also a lot of overlap with those three and hypermobility, Ehlers-Danlos syndrome, POTS, various forms of chronic fatigue, and food allergies. Might be a good idea to look into every part of that cluster, just to see if anything sticks.
POTS seems most likely considering the symptoms the only thing outher it Could be is some kind of inner ear disorder but those would have slightly different symptoms the only thing questioning here is why a doctor wouldnt assume POTS by those symptoms but i guess the thing is that we dont know the previous medical history here
I mean, I'd honestly say inner ear disorder because it sounds like really, REALLY bad motion sickness 24/7. Especially with always needing fresh air to stave off the impending doom of your whole world spinning and getting nausea.
@@chrisheartman9263 it could be Ménière's disease but the age of onset is useally later and it is combined with hearing loss but sometimes certain symptoms dont pop up until later alternatively hyperthyroidism is also a diagnosis that could fit espeically considering that there could be multipile disorders present or some outside factor changes the way the desease presents
@@pazzieanneknexx809 yeah, that "last diagnosis" thing is one of the biggest problems in any healthcare system, along with cost and discrimination. it is technically a neurological problem that can develop at any age, usually before 25. something with the inner ear is possible as well, but that shouldn´t be affected by temperature and humidity as much as she said it is. I don´t know either and I´m not a doctor, but I have gathered a good bit of knowledge over the last couple of years.
Finally someone with something similar to what I have. I haven’t had to deal with mine as long as you, but i know exactly how you feel, I went from having a normal job, with attacks go from occasionally happening a few times a month to, once a week to almost everyday. It’s horrible feeling this, I have to walk around with a walker, it’s so annoying and frustrating especially since it only helps me walk because I have more balance points. Thank you for sharing your story, it means a lot to know I’m not alone, I hope you figure this out and can live life normally again ❤❤❤
Hey ❤ fellow chronic illness haver here. Ive had severe chronic migraines since i was nine years old. Its extremely hard to explain to able bodied people just what it feels like to have your health working against you. "Im used to spending my entire life walking on this biological and neurological tightrope" is genuinely the best way i could attempt to describe this to abled bodied people. I care about the people in my life a lot, i care about my situation a lot, to have to weigh the time and experiences with the mental and physical exhaustion of pain. I grieve for the birthday parties, the rollerblading, the fishing, the people tired out by me, the smoothness i used to have in academics, movie theaters and stage shows, live music and symphonies. Getting to go to art shows and gallaries. But theres also the moments that keep me grounded. The meetings and understanding from friends despite my having to bring a cane and a nausea bag everywhere. How they understand when i need a quiet day where parallel play is the focus. They understand when there are days i physically cant see anyone, because the symptoms are too severe. Im fucking ride or die for them, i would not have gotten this far without them. Im still working on understanding whats wrong with me. Anxiety and stress are one of my biggest triggers as well, in the mean time if they cant figure out the big issue at least i can try and treat the symptoms to reduce the chance of snowballing. Finding healthier ways to cope with anxiety has helped, though its been gradual and like i said doesnt actually solve the problem with our bodies, but it offers relief. Things like those compression socks, or my eye masks, theyre tools to reduce the pain while we continue to be medical mysteries. I really appreciate you making this. I am so happy to hear you have a support system. The isolation that can come from disabilities can feel like the most crippling part of it. Not just socially, but physically, enviromentally, even idealogically. Im still in the process of working through isolation, its a harder struggle than the many times ive been sent to the hospital. The implication your existence benefits from you alone is hard, i stopped counting how many times ive thought i weighed my friends and family down. Thank you for talking about it, i needed a reminder that my life can work out. I would suggest if you have the resources to, then look into audiologists, neuro-optometrists, and physical therapy. I havent been able to stop my migraine-induced vertigo attacks, but a neurologist and an audiologist helped me with reducing symptoms while PT helped me be more mobile while attacks were active. I will admit their help most only applied to the last day and aftereffects of my vertigo attacks but a little bit can go a long way in helping exhaustion. I would be a hypocrite to ask you to stop smoking, but something that helped reduced my nicotine intake was rolling herbs like motherwort or skullcap into cigs and slowly replacing my nicotine diet when i feel like can only smoke rather than eat. If you havent already, try weighted blankets that leave your head and limbs exposed, and grounding exercises that dont require and head movement. I completely get the limited jaw movement, you may consider (i know this sounds silly but trust) looking into ventriloquist speech, using their techniques to recude any jaw movement while still making coherent speech (even with half my face partially numb) has been a serious painsaver. I really hope these help!! Thank you for the videos you make, youre funny, well spoken, you have a deep understanding of the topics you talk about and it makes many questions for me to ponder. Thank you ❤❤
I hope you find the reason for your symptoms - and a way to mitigate them - soon. For half a century I had a similar problem, where I never knew when I would be knocked out for a week. It turned out to be easily fixed by something completely unexpected, that medically only makes sense if you do not assume normality.
> It turned out to be easily fixed by something completely unexpected, that medically only makes sense if you do not assume normality. What helped? I don't expect it would help others - just curious.
@@sznio During puberty I started getting severe classical migraines - with every symptom in the book - including brain centers turning off, making it impossible to speak or control limbs on the right side of the body. Getting over such an attack took most of a week. After some time I was able to identify and avoid most of the triggers, but I was not able to determine why I got an unprovoked migraine approximately once a month. it turns out that for males (not on hormones) classical migraines are often caused by hormone imbalance. When I got on HRT and got the hormone levels stabilised (no testosterone, sufficiently high estrogen), the monthly migraines stopped. I have symptoms of being intersex, which may explain this seemingly contradictory reason.
vertigo is such a disabling symptom. many people in my life have had chronic issues with it and all with different causes; POTS, calcium build ups in the inner ear, reynaud's, infections. wishing you all the luck with the strenuous diagnostic process
I am not a medic expert, I know someone who has same symptoms and it ended up being middle ear canal problem that was causing imbalance, she uses hearing aid now and things are better now. Really wish you the best, I wasn’t ready to watch this vibe but happy to hear you share that with us, you have lovely friends and family, I’d do the same to you if we lived close, you deserve the best. EDIT: Hearing aid isn’t necessarily the direct solution she went through some more medical procedures.
Your story reminds me heavily of my experience with Long Covid. I spent two and a half years under a umbrella of symptoms and situations, suffering all the while and losing control of my body and my life. There was only one thing I wanted more than myself back: answers. I was lucky that, with time, I've clawed my way back into something familiar. But not the same. I "recovered", but I still have chronic symptoms, still carry "scars". I still live with fear, and exhaustion. And I never fully got my answers. But I know that, so far, I'm alive. I'm making it. With any luck, I'll keep on doing so for some time yet. I suppose that's all any of us can really do, in the end. Keep making it. I hope you find your answers, my friend. And that you find a familiar place to rest your head.
I had issues like this to a lesser extent since I turned 12-13, I eventually narrowed it down to my body over reacting to certain stressors (hot temperatures, rapid temperature changes, stress, elevation changes, hormonal changes (period). For me it turned out that my body overreacts to stimuli, causing my blood pressure to rapidly drop causing most of the symptoms you described. Because my blood pressure was already at a low baseline these drops were really severe. Everything appeared normal because when I wasn’t in an episode my blood pressure was normal enough. Pots is a good theory to start with, add Vasovagal syncope to the research list too. My medication for a different issue ended up raising my blood pressure so I can tolerate things a bit better. I also started eating more salt and drinking more water to up my blood volume. Eating less meat was a weirdly helpful thing, I eat a lot more lean meats like chicken and more seafood. Doctors can only know so much (and bad ones act like they know it all). Finding someone that specializes in what you’re dealing with will be hard. I hope that someone in this comment section can give you a lead that will help you narrow things down. That’s the best thing about the internet, we’re not as limited to just the knowledge we can access on our own anymore.
This video means so much to me, thank you! 🙏🏻 When I was 17 Tinnitus decided to just start haunting me. I had only been to one concert in my life and didn‘t listen to music super loud, so it seems to be mental not physical. Then at 21 my eyes started to see a wall of 1000 tiny, ever-shifting lights that have made it hard for me to watch movies, like I used to, because it fucks with my perception of light and depth. And 2 years ago muscles in my shoulder regions have just started constantly feeling like they‘re contracting. Despite countless doctor visits and 3 rounds of physical therapy, I have found no remedy for the first 2 and only a temporary one for the last one, that involves me doing 30 minutes of specific excercises every day. You‘d think that would atleast be healthy, but when you already have a packed schedule, issues sleeping and 0 motivation to do the excercise, waking up 30 minutes earlier and immediately doing excercises, takes a toll on your mental, far outweighing the physical benefits. I can‘t ever have a lazy day, even on vacation I need to do these damn excercises, so my muscles don‘t distract me all day. I mean fuck, 3 of my 5 senses are compromised, thats fucking crazy! Its been a hard few years (I‘m 25 now) and the only solace I can find is also in my friends and now this video. Back when you first mentioned your vertigo (I forgot the exact video, but you were driving at night and smoking a cig in your car), I immediately understood what a big deal it was. Idk something in your voice and the way you described it, clearly communicated to me, that that was your chronical medical issue, similar so mine. Happy you finally made a video about it, because theres a lot of things in here I needed to hear. So again, from the bottom of my heart, thank you!!
This is what took out one of Meshuggah's original members from their roster - couldn't tour due to intense spinning sensation, struggles with intense constant vertigo, especially when on busses or public transport in general.
this sucks :( i dont have vertigo issues, but i know at least one person with them. i wish u were lucky enough to get answers and/or treatment. you look great, and i hope you feel it eventually. you’re lucky to have your family, and hope you’ll get to do things with them soon.
Before I say anything else, I want to say thank you for this video, as a disabled woman who wants to be a youtuber it gives me hope that it’s worth it to go at my own speed. That said, I’m so sorry you have to go through this, I’m very disabled too, in a different way, I have rheumatoid arthritis and a bunch of other crappy disorders. Just last month for the first time in probably six years I made a friend irl, it was a complete fluke honestly, they lived nearby and we like the same things, but I’ve only seen them twice because I can’t leave the house without it triggering a severe flareup or at the very least being very agonising.
I think I've had situations that sound very similar to the one you described at the beginning of the video when you were playing GTA4. It's happened twice to me, once in 5th grade when our teacher was describing the symptoms of the black plague, for some reason that description really got under my skin, so I left to go to the bathroom, and just collapsed on the floor of the hallway, sweating, and feeling like I was moving around but completely still, freezing, but burning up. The second time was more recent, while watching that one Wendigoon video about the Japanese guy who was blasted with a bunch of radiation and suffered in the hospital for 83 days. That time I stumbled to my bathroom, collapsed in my shower, accidentally tore down the curtain and gave myself a giant bruise on my ass. I tired to scream with every fiber of my being, to try and snap myself out of it (which kind of worked? It started getting better after that) but my roommate didn't hear that at all, so it must have been very quiet externally. Fortunately for me, those were just isolated incidents, with direct, obvious, causes that triggered them (gruesome descriptions of bodily horror) while yours also seemed to have just been triggered completely randomly, and I don't have the chronic lightheadedness you experience after the fact I wouldn't wish that upon my worst enemy. Hope the nerds down at the science lab can get you sorted out.
Just replace your nausea and hot flashes with head splitting migraines and we're basically wearing each other's shoes. I've been dealing with vertigo for what feels like forever now and the constant doctor hopping and normal test results has always been frustrating. Basically having me feel like the healthest sick person, but what bothers me the most about it is what you describe in the video is the inconsistencies of all this my vertigo attacks can sometimes last hours, days or even multiple weeks and it just feels almost impossible to adapt and plan around as if dealing with it in the first place wasn't already exhausting enough so I really feel for you and I too am forever grateful for my family and friends i have because without them I'm not too sure I'd still even be here typing this comment. Well thank you for this video and all the others you always make good stuff!
I have experience with a very rare illness, 1 in 100000 people will develop it. It's a full throat paralysis, likely caused by my lupus. I can't swallow anything properly, it just stays in my throat. Sometimes it causes me an acidic pain, because the food/liquid is sitting in my throat too long. It's called Achalasia, and there is no cure, only mitigating surgeries. Since 2020, I have learned how to swallow manually by myself, & have found ways to explain and traverse through society, such as going to restaurant bathrooms to easily spit out anything that I can't forcefully and manually swallow/push into my stomach. My friends and family are very supportive and understanding. I am so thankful for it. Doctors originally told me in 2020 it was GERD. Because thats more common with my symptoms. It took me going to a specialized gastro dr. in 2022 to be correctly diagnosed after 2 misdiagnosises from a family doctor, and a hospital doctor. And I WAS LUCKY! Many who suffer with my disability go *decades* being misunderstood, living without an actual explanation or answer, being diagnosed with psychological or physical conditions they do not actually have. My advice is to always seek specialty doctors, or communities where people have similar symptoms (as they may also help point you in the right direction on your journey.) I hope this story helps you, wishing you the best. ❤
Btw, if you ever make it back to Greenville SC, I will buy you a steak dinner!! lol (I live here, and since we both aren't compatible with restaurant settings, it's completely chill w/ me to take to go!!! lolol)
I have my own mystery condition. Since I was 10 I've had headaches that made my limbs feel heavy and numb, and my vision to vigniette into darkness, alongside throbbing, whole head pain. All of the symptoms get worse until it falls apart or fades. In 5th grade, at my own birthday party, I had stayed up all night not eating or drinking and just gotten out of lazer tag when I was pounded by my headache until I found myself waking from a seizure, on the ground, with a crowd surrounding me like in a movie. My mom had caught me, so my skull was fine, and the following ER visit revealed nothing to suggest why it happened. The headaches have always come back ever since. When I'm not eating, drinking, breathing fresh air or when my body just hates me, I'm brought to the floor with pain, unable to move my body as it feels like it weighs the same as a neutron star. They don't linger, I can only imagine what that would do to me, but when I'm in the throws of it I'm useless. No neurology visits or specialist opinions so far have kept me from losing control of my body and slamming my head across a toilet's rim or sprawling out on the ground at the side of the road trying to see anything at all.
Though not nearly as severe, I struggle from a severely strong gag reflex. I'm always one step away from vomiting, if I see something gross, I think about throwing up or hell if I cough a little too hard I'll be unable to speak or move that much for a minute or two. Again, though not as bad in comparison, it is really not fun and I can not imagine something that I'd assume to be ten times worse. Even something as simple as almost constant nausea can be awful if not debilitating. Point is, even if I can't imagine how bad it is for you, with how bad it is for me, I empathize with you and wish you the best.
I am so sorry to hear about these issues. It's honestly heartbreaking. It sounds a lot like my migraines. I get frequent migraines that sound very similar to what you're describing, and you're right when you say it's hard to describe the absolute loneliness and helplessness. The worst part is the loss of "normal" productivity. Feeling like you can't even do regular tasks like grocery shopping or even hanging out with friends is almost as bad as the pain and symptoms themselves. It feels so infantilizing, when I just want to do everything right. I hope you get the help you need and get this figured out.
Please don't play Kane & Lynch. If you have vertigo or motion sickness, it will do horrible things to you, and even if you have no such conditions the ridiculous camera shake will make worse, you will probably throw up at how f-ing horrible it is as a game.
The game that gave me the worst case of vertigo ever was by far the PS4 port of DOOM 64 which was originally released for Nintendo 64. It literally lasted for a week despite playing the game less than an hour. And whenever I even tried it again for 1 minute I couldn't continue bcuz all the worst symptoms instantly returned. I genuinely thought I was gonna die. That week still feels like a very long fever dream.
Leadhead's the channel where I'd look at their videos and be like "oh I don't think I'd find that interesting, plus it's like 30 minutes," and then I'll click on one that randomly showed up on my feed and it's one of the most profound, thought provoking videos I've seen on this platform and it's all just random bits of her life story
I also have a bizarre body/brain situation that makes it very difficult to travel around. I know how hard it can be. Mine isnt as bad as yours, though. I hope you work out what the issue is. Solidarity and hope.
I get vestibular migraines, and struggle with FND, and heavily relate to a lot of the things you lament here. nothing but solidarity and empathy your way.
At the very least it seems, from your description, that the symptoms are getting better over time, even if just a bit, so there's hope that you could one day be able to return to at least some if not all the activities that you lost to the vertigo
I think I left a comment when you last mentioned this, so forgive me if it's been discounted, but have you been tested for Multiple Sclerosis? I say this because few years ago the exact same sensations started happening to me. I think literally all of them - the sudden extreme heat, the constant spinning in my vision, the nausea and vertigo, the lightheadedness, I think I even know what you mean about the "morning vertigo" with the head feeling like it's moving slightly too fast or freely. I don't know if you can relate to this, but I also had weird sensations in my limbs and lower body where sometimes they felt like they weren't part of me, sometimes they were painful when even lightly touched, sometimes they somehow felt numb and very sensitive at the same time. I could lose track of where my limbs were and how to move them in the right way, so walking wasn't easy even when the nausea wasn't so bad. Anyway, this all came and went like you describe, possibly also triggered by period of high stress and/or heat, and eventually going away but not always completely. The worst "attack" I had was during the pandemic, where I had to remain basically stationary in bed for a couple of weeks, while my best friend and housemate had to keep swapping out out my bucket of sick and pee because there was no way I could get to the toilet downstairs. I could barely eat or drink, and I had to keep my head quite still and facing right at all times or the spinning nausea would go haywire. It would be like the worst rollercoaster in the world, I felt like I was being violently span and thrown in all directions while I clung desperately to my bed and hurled into the bucket beside it. Yeah, probably the most unpleasant experience of my life. I went to the doctor about it after it had mostly receded, along with the weird limb etc. sensations that I weren't sure were connected, and they didn't know what it was (they thought it might be an inner-ear condition but that didn't match up in the end). But eventually I got referred to the neurology department and long story short, yes, I've got Multiple Sclerosis. They scanned my nervous system and found lesions in my brain and spinal cord, which apparently is basically caused by my immune system occasionally deciding they're foreign agents that need to be expunged from the body. I think the symptoms can vary a lot depending on where it decides to target, which can make it hard to discern if you don't know what you're looking for. This comes in bursts that they call relapses, and in-between those brain etc. can recover for a while but not completely, which means untreated it'll gradually lead to more and more symptoms and disabilities worsening and piling up. There's no cure exactly, but I'm getting twice yearly infusions of a drug that basically tell my immune system to chill out, at the cost of being somewhat immunocompromised, at least with minor infections. So while I'm still a bit more sensitive to motion sickness than I was before, I haven't had any major relapses, and the limb sensations have pretty much gone all together. I'm still told to avoid stress and high heat, but I can pretty much forget about it most of the time, which is great. I'm so lucky to be living right now, as treatments are getting so much better: the drug I'm on was only developed in the last decade! So yeah, as a fellow spinny trans woman, if you haven't looked into MS I'd really encourage getting it checked out, and you have my utmost sympathy.
its a good day when leadhead posts, although it has been amazing you are able to manage better with this medical mystery now and the strength to deal with this must be incredible ❤❤
This's the first video of yours I've seen, the algo. pushed it to my home page seemingly out of nowhere. And I've been so invested hearing your story the whole way through that the video didn't even feel like a half hour long. It stood out to me that despite all of this, you still have found ways to enjoy life. To take joy in the little things because we don't know what we have until it's gone. That's hard enough for people as is, and you're doing it with this awful life-pausing unknown hanging over you. That's immense emotional strength and I'm really impressed. I hope you find an answer soon to what's happening, and ways to get back the life you deserve to have.
i hope someone - anyone - can figure out what could possibly be going on that's causing this. thank you so much for sharing this; i hope you can get answers for all of this. please take care of yourself to the absolute best extent that you can. (lasko wind machine fans are the best fans i've ever used lmao, money very much well spent)
you are my favorite youtuber. thank you for sharing your experiences, and I desperately hope you continue to make videos for as long as it brings you joy
This spoke to me like few things ever have. I'm sorry you have to deal with so much, but so happy you have good people there with you. It really makes all the difference.
Mentioning that feeling stuck somewhere is a trigger for your symptoms is entirely relatable for me. I struggle with anxiety and agoraphobia related to my ibs, and i'm terrified of being stuck somewhere where i can't "handle business." It makes going out for me, even just to the walmart 5 minutes from my house, an entire anxiety-addled ordeal. It's somewhat comforting to know that I'm not the only one
No idea if it could be this, but I heard of this weird thing where some crystals that form inside the ear can sometimes get dislodged and end up bumping into the regions that sense orientation instead of sound and that can mess people up; and there are some specific head movements a doctor can teach you to get the crystals to fall back into a safe position. I don't remember the name of the condition, but it might be worth asking your ear doctor about it.
I don't have any words. I couldn't imagine going through what you have, or what you're still dealing with. You deserve so much love. I'm so glad you've surrounded yourself with people who can and do provide that love. And thanks for making me want to play Minecraft again, haha. :heart:
I've got a different set chronic issues but watching this video you just kept describing things that were so parallel with my own experiences its was spooky. I've been lucky enough to have my symptoms improve over the last couple years and I hope the same can happen for you too c:
I found this video highly relatable. Every single symptom you've described is something that dominated my life for about 9 months in 2018-2019. In my case, it turned out to be chronic hyponatremia, and it wasn't discovered until a more acute hyponatremic state caused me to pass out and have a seizure while unconscious. If you think there's any chance this could be it--you'll want to check for whether you're getting enough electrolytes into your system, or whether you're drinking so much water that it's draining those electrolytes, as was the case with me. You can buy packets that provide extra electrolytes if so. It helps me out a lot as my body requires a ton of extra hydration, and so also a ton of extra electrolytes, in order to be able to sweat at all and not be constantly constipated. I used to also need extra water for temperature sensitivity and other reasons, but that has subsided as I've become more healthy in general.
I'm so sorry to hear that you're going through this for so long without answers yet. I hope you can get some soon and get back to do the things you love doing
I had a very bad streak of migraines+vertigo episodes this year that resulted in me going to the ER and getting even the doctors scared of wtf was happening to me. After nothing working, the doctors realised I was probably having a massive panic attack and gave me some medication for that. That in convination with magnesium and other measures to deal with the migraines helped me immensely to reduce it. I've been better after that. I always get little vertigo snaps that scare me but everything is VERY much tied to being stressed ans unhappy. Starting transitioning has helped me immensely reducing them. I hope yall get better, you deserve it.
this is horrifying to think about, what you've described sounds like what i experienced the first time i smoked way too much weed but times 50. i can't imagine feeling like this 24/7, i'm sorry this is affecting your life so much. i hope you can find a diagnosis one day. But i'm really happy for you that you have such a great support system and so many people who love you and care for you. that's beautiful
It may sound like I’m downplaying it but it maybe anxiety. The “fight or flight” part of the brain is the same as the “rest and digest” part. I don’t have the particulars on hand. But I found out that is also connected to kidney issues which, my mom is dying of. And it turns out she had the same anxieties and pains, but she masked from shame her whole life. But no matter my diet, exercise, social, work, and financial situations, I get these intense anxiety attacks and get sick all the time. But yeah I miss the world too. I was always adventuring as a kid. But I can’t anymore.
But I’m so glad I’m not alone. Another 26 year old trans fem fighting the same things 😭 the doctors always dismiss it as diet, weight. And therapy isn’t enough to stop it. And like. It took so much to overcome the struggle of asking for help with it.
But I took a walk to my old work place, dressed up cute, listening to my favorite song, was feeling a bit insecure but a random woman told me I had a beautiful smile and it seriously made my day. I had to lay in bed for days from how tired the walk made me. And like I used to be a cross country runner. But I can’t run without pushing myself to exhaustion (moving for more than 2 minutes)
Hey Penelope! I would like you to know that I don't mind if your uploads aren't as frequent as you would like, I have been a fan(pun not intended) and wait for your uploads ever since like 5 years or something like that. it's always a delight when I see a video of yours, thank you for the countless hours of fun and reflections upon myself you've given me, greetings from Chile
My hearts goes out to you! I'm also a medical mystery after suffering from vertigo, difficulty to walk on my own and vomiting that left me in the hospital for 2 weeks. Brain and full body MRI, spinal cord fluid test, bone scan and any other test under the sun came out fine and yet, 2 years later I'm still suffering (although recovering, very slowly) from lack of feeling on my right leg, frequent mild headache and my left eye slightly popped out. I dont do drugs or smoke or anything else and still young which made this whole thing even more weird
I've dealt with the same thing off and on for a while now. After a LOT of tests, I've just come to accept the advice of a therapist that what's happening is a feedback loop of stress and anxiety. For me the original incident wasn't vertigo, but heart-related. But everything after that is exactly how you described it, being constantly lightheaded and vigilant. The issue is that my nervous system was shot, and that will cause symptoms like lightheadedness, which I then get anxious and worried about, which only adds to the stress. It's a horrible cycle, but one that can be lived with ❤
i think i mightve had one of these back in 2020 where i suddenly passed out and had an intense hot flash and the world was spinning, i could never imagine living with the constant fear that one of those could happen from basically anything at any time. you're a lot stronger than i am
Not much to say specifically on the topic. I just wanted to thank you as ever for putting yourself out there and taking care of yourself. I often take a while before I watch your new videos because I have to make sure I'm in the right space for it (they're never that heavy but I just worry I might react strongly). Either way, I wish you the best and I hope you can continue to find some form of relief for this issue.
When you said something to the effect of “that’s the thing, I have no idea how to describe the feeling other than just ‘lightheadedness’” I felt so indescribable because that’s exactly how I worded something I went through for years upon years after I had a brief contest with epilepsy. Once I stopped having seizures for good they were replaced by what I only called “auras” where I’d just suddenly have to stop what I was doing and lie down, with a general feeling of intense malaise and lightheadedness, almost like my vision shifted but it was never actually impaired. Mine seem to have been much more infrequent and, eventually, I was able to push through and I’ve only had about 2 this year and they were the kind I can push through. But I also ran the gamut of accepted and holistic medicine until I gave up and I know how absolutely horrible it feels to go through that. I hope you find a diagnosis (very curious for my sake too if we have a similar condition) and are able to find effective treatment, or it just fades slowly over time like mine did.
on the idea it might be linked to humidity; what about pressure? i have pots and many other disabilities and pressure changes (which is often accompanied by rain) can take me out hard. pressure and temperature are the two big ones for me weather wise
I deal with similar symptoms, though not quite as extreme. Heat management’s an especially big issue, i always keep my car’s AC in working order because of that. The times where i feel vertigo and wooziness tend to last for shorter periods, as long as i get to lay down and let my body “reset” but the chronic fatigue really gets to me. Like you, i’m also self-employed, for similar reasons. Might not need or have as much support as you, but i count myself lucky i have the support i do regardless. Hope you can have more good days, and figure something out to make it less intense. On a similar note, if i remember correctly Hideo Kojima deals with a lot of motion sickness himself, and it’s part of why metal gear is a slower-paced stealth experience in the first place. It’s also the reason why the fixed camera persisted in the series up until MGS3; too much spinning the camera around was nauseating
For me this sounds really scary, because a few years ago I had this 3 year streak where every time winter was about to start I would get terrible vertigo. Like the whole world would slowly start spinning one day and then I would I would wake up the next day unable to get out of bed because it was so bad, but then all of a sudden it would stop randomly. I went to the doctor and it was a seasonal allergy symptom where fluid would build up in my ear, but I don't think I ever found out why it would randomly stop. I'm glad this hasn't happened to me again in a while, and your situation sounds like the worst possible outcome of what happened to me. I hope one day you can have some closure too.
Thank you for sharing! It's been really relatable, and thus encouraging(?). I don't have vertigo (well, I did have some last year, but now it's been fully gone for a while, so I hope it won't be back), but I have other issues that result in very similar problems (troubles going outside, not liking being stuck, panics, missing out on life). Day-to-day stuff is manageable, but once that is solved, you realize how much you're still unable to do. Hedonistic treadmill or something. Although, in my case I'm pretty sure that it's 95% due to anxiety. I wouldn't be surprised if your symptoms were, at least in part, due to psychological reasons (like the "PTSD" you mentioned). Our brains really are weird. (I hope it doesn't come off as belittling or downplaying) Again, thank you for being so open. I hope you'll feel better, or at the very least not worse. ♥
I actually have about the same issues which is why seeing this is so strange. I’ve went to multiple doctors and specialist, I had wires on my head, mri’s, I went through neurological doctors, ear doctors and much more. They basically told me dizziness is one of the most mysterious things that doctors haven’t fully figured out. They assumed it was vestibular migraines but they said they aren’t sure themselves. It’s been about 4 years and I experience it frequently still but it goes away and comes back.
i think the first video i watched of yours was one on dishonored. or you were just playing dishonored in the background i can't remember. either way, funny that the first video i've seen from you in years is also one i relate to very personally ^^ long story short, i'm in my early 20s and developed a panic disorder from a bad experience. growing up being a troublesome kid and only really having friends in that ballpark, i had a hard time getting my best friends used to the idea that i just can't do certain things anymore. it was seriously degrading to tell these guys i've traveled states with that i suddenly can't get in their car because it makes me want to rip my skin off. i'm absolutely blessed to have them still there for me because they actually cared. very heartwarming and mindset altering to say the least. getting in the way of yourself like that changes you, changes how people see you. i've done my life very differently than how i imagined since then and it absolutely hurts knowing it's all because of my own head. but i'm not even close to giving up. when i let go of that rope there's no coming back. there will be a day where i wake up calm and my persistence pays off.
I can sympathize with this video, especially the parts about feeling like a burden and having people who can support you. On one hand, I was diagnosed with Nephrotic Syndrome a few years ago (which is a collection of symptoms caused by kidney damage, my particular variant was a result of my immune system's executive decision to ruin my kidney's life) and, predictably, had to go through a permanent dietary change and had to keep popping immunosuppressive pills afterwards. On the other hand, if I didn't have the proper resources (read: my parents), I wouldn't be able to keep it up, and I would just be going through back-to-back hospitalizations. In short: If you have people who can help you, you'll be able to fight on, and take on the next day, and then the day after that, and so on. Stay strong!
being sick forever is a nightmare. i've lost so much of my life to whatevers wrong with me. just did less and less over time until i ended up sitting in my room all day for months at a time. The loneliness of it all is the worst part. The few friends i have make life worth it. But they're all so far away that visiting might be a once in a life time thing for me. And i rarely feel truly well enough to spend time with them. Hard to play games or watch movies or chat when i can barely see the screen. Sometimes it feels that my condition gets worse the longer i spend physically alone. Never feels like i can actually relax and feel safe by myself. And i havent made friends with anyone i could actually meet in person in many years now. its gotten harder to stay motivated, to keep struggling. Harder to even talk to people. But gotta keep going. If i don't collapse mentally again, i'll get my bachelors degree next summer. Its good to know you have a supportive environment. Without my friends i likely would have dropped out of uni already. Hopefully you can figure out whats wrong and a way to improve/fix it.
I hope you get back to videogames soon. The last few videos were just about you ans that's just not the reason I subscribed. I watched that one video where you sit in your car at night or your coming out and that really resonated with me, but since then this channel was mostly about you as a person. I really don't care for you as a person like I care about videogames. I'm really not that into parasocial relationships, but I really loved your writing style on games and I hope you'll get back to that soon. I really don't mean that as an insult, I just don't know you at all and don't want to (as long as this is a one sided thing), I just loved your videogame stuff :(
As someone with depression, I can definitely relate to feeling useless, and being unable to take care of yourself and the people you love. That in and of itself is hard.
i am also a "medical mystery" at the moment. though i have a totally different set of symptoms to you, i get how it feels. not knowing what the problem is is so so scary, and makes dealing with the debilitation so much worse. i cant manage anything. why? no clue! sure hope its not shortening my life while im not looking! wishing you the best with finding answers and hopefully treatment 💛 50 years ago, SMA and Cystic Fibrosis were death sentences. 100 years ago, our best idea for celiac diesease was feeding kids pounds of bananas every day. these are treatable conditions now! you and i can be next. or at least we have to hope so.
I've experienced what you're talking about, only for a very brief amount of time and thankfully it doesn't happen often, but I'm still very prone to feeling dizzy allot of the time, i thought it was normal, RIP us i guess, i hope you get better someday
I have a similar although far less intense experience sometimes, especially in the bathroom when it is very warm and moist in there, I feel like I am starting to pass out, it never happens when I shower, but it does happen when I am using the sink or something. Luckily it does disappear when I get out of there for me.
Dramamine is a bit of a double edged sword! It can both help against these symptoms and cause them. Funny that. I have had similar symptoms for a while but i think it might have been my anxiety disorder running out of control? They have substantially subsided by now. Do you breathe normally or do you notice any issues in this regard?
yk while watching this, im sitting in my bed with a lot of pain in my calves and when u were talking about missing the things u used to be able to do, i started thinking about what i missed too. i started having leg pain randomly after i got sick nearly two years ago, the pain was fine at first, it stopped me from doing some things but im a homeschooled teen that doesnt rlly go outside so i didnt care that much. the pain slowly got worse monthly, it went from just one heel to both my legs cycling the pain daily. i started freaking out and asked my mother to buy compression socks because i rlly didnt want to lose the ability to walk around easily but i did. the compression socks help but i still cant walk as much as i used to, i cant go on long walks to the park, i can barely go to my backyard or the balcony. i stare out my bathroom window sometimes cus its so nice to see, smell and hear nature but i know if i go outside and sit down, i probably wont be able to get back up on my feet. i havent been going through it as long as u have but idk its nice hearing someone talk about stuff like this, especially feeling like being a burden, thankfully i also have ppl who will help me when i need but still sucks to deal with.
In mid life my father started to get vertigo and dizziness attacks, spinning and loss of balance. This was diagnosed as Ménière's disease and alleviated with tablets and a surgical procedure whereby "gromets" were positioned inside the inner ear, presumably to control some physical aspect of the condition. From memory he had to return to hospital a couple of times I think when the gromets got out of position. This was all over 50 odd years ago but it might be worth looking into...
I have POTS and it's not a fun time. I really wish I could stand up and walk a short distance without having to immediately sit or lay down on the floor to avoid collapsing
I used to be a really hardcore kratom addict. One of the reasons i stopped is because it would give me vertigo to the point where i couldnt walk. Thankfully for me it went away once i got sober. Just being stuck like that is terrifying 😅
I completely relate to this. I have a weird spinal issue, that puts strain on my bloodflow, making me extremely unfocused for the most part of the day, and makes me have these weird tingling feelings every time i move if i havent moved for a long time before that. And absolutely nobody can tell me what this is and how to fix this permanently. I've been warlking through doctors for two years straight until i gave up. Now im just living with it. Waking up is hard as my entire body is in pain from stiffness, thinking is hard if i havent had a walk that day, working for more than 4 hours a day is hard from the way my body naturally slouches despite all of my efforts to not do that. If i get into a feedback loop of not moving, feeling too weak to move and making it worse by not having the mental energy to force myself to move, i can skip entire weeks like that, just feeling terrible and having so little focus to not notice days go by. A medical mystery is a phrase that also crossed my mind around the time i gave up. I havent gave up on life though, and fuck me if i ever will. Adapt, survive, thrive. I guess thats just how curses feel like when you live in a fantasy world.
Give us a way to fund a really expensive doctors visit that could 100% find out what's going on, and by god we will fund it. We will find a way, not just because you make great video essays, but because you're a fellow human being who deserves a fair shot at life. Go forth and kick ass, Penelope.
![ไข้ขึ้นเลย! เมื่อแฝดโดนจัดเต็มวัคซีนครบ2เดือน🤒 [cc] แดนแพทตี้ SS2 | EP.54 |](http://i.ytimg.com/vi/z2VHItnyyvY/mqdefault.jpg)
i love how shes just sat in CS2 maps, the best use of a green screen imo
i thought it was stock images until like 20 minutes in lol
Cfs haver here - the isolation that comes with being too ill to be part of regular society versus not having a conclusive reason for your sickness is such a strange and unique loneliness. One that’s hard to express. I’m so happy you have a wonderful supportive community around you x
Small thing but I love the use of the Cruelty Squad title theme as background for the nauseating description
Apologies, I haven't watched the whole video - but as you're talking about a non-stop dizzy sensation, have you looked into vestibular neuritis?
Surprise gmtk appearance lol
OMG GMTK HIIII!
holy crap, its him
How do you feel about high beams and LED headlights that everyone seems to have nowadays when your driving at night? Does that just take you out?
what a fucking miracle it'll be if thats it. like no way...
from a fellow medical mystery disabled person (POTS haver, too), I'm sending love and solidarity your way
I had chronic Lyme symptoms for about 10 years. The worst part was being sick, but having a bunch of doctors tell you you couldn’t be sick was probably the second worst part.
Doctors are notorious for dismissing Lyme's symptoms. You legit need to find a Lyme's specialist sometimes.
OMFG YOU TOO??? i've literally never met anyone else with this experience before??? seriously whenever i explain my medical situation people think im either making stuff up or am just overreacting to migraines?? i'm so happy i'm not alone in this experience, let alone that one of my favorite content creators also deals with this shit
try to look into vestibular neuritis and POTS
My partner is a neuroscientist, and I remember them talking about how many or the things you describe (balance, body temperature, hunger) are in one form or another linked to hypothalamic function. I know it isn't much to go on, but if you have the opportunity to take a closer medical look at your hypothalamus, it might point your doctors in the right direction.
I should emphasize that neither me or my partner are medical doctors, just a couple of nerds with phds.
Stay safe. I hope you solve your mystery and that the solution is some mild drug and a headpat.
I had two vertigo attacks in 2022 which resulted in prolonged hospital stays and needing to re-learn how to walk in a straight line. It was caused by low blood pressure in my right inner ear; why it suddenly occured, nobody was able to tell me.
I thought I was going to die when I first woke up and fell to the ground during my first attack. That fear is still with me sometimes when I feel dizzy or light-headed in the morning.
I hope that you will find a doctor who can help you. You deserve to be okay and live a life without fear. You are so strong, please remember that.
@@mongeeman It doesn't sound bad. Knowing that there are people who share the same fears and have the same struggles as onself is almost comforting, in a way? You know that you are not alone. I wish you a peaceful life, take care!
ohmy think i have had somethin like that for some time too
I had an issue during my shower about a month ago, (august), I was dizzy and nauseous, during my shower I felt my hearing get kind of muffled, I knew I only had a few minutes to grab my towel and rush to My bed as I collapsed wet and bare. I can sympathize with you in this regard, I'm chronically ill and I never realize how fragile I am until I can't push myself any further with what im doing, please take care of yourself to the best of your ability, I may not know you but I care about you ❤
Videos like these make me realise how privileged I am for not having any major conditions like this.
I genuinely wish you the best.
I'm training as a cardiologist in the UK, you might have a disproportionate tachycardic reaction to hypotension (a drop in blood pressure) which can be brought on by orthostatic changes (standing up too fast, quick changes in temp etc). I see other commenters have mention POTS this comes in differing forms from neuropathic (spinal cord injuries that cause blood to pool in the feet and drop your blood pressure) to hypovolaemic (low sodium intake, diarrhoea and vomiting). Ask your doctor to rule out Ehlers-Danlos syndrome since that's an alternative possibility.
I'm sceptical of making a diagnosis of strangers over the internet, but there are some conservative measures you could try, for example increasing your salt intake or using compression socks. If these are ineffective, your doctors should look to drugs such as midodrine or Ivabradine. POTS can also just go away on its own, (although this seems to happen more in peads).
I hope this is of some help, thanks.
I've read more than one account from doctors who see a lot of trans/queer people anecdotally noticing that trans people having a much higher likelihood of also having some combination of autism, ADHD, POTS, and EDS. There's theorizing that it has to do with MTHFR SNPs, poor methylation/high homocysteine, and that methylated B vitamins could potentially help.
A couple times I've seen tiktoks from trans people that have something to do with being flexible and I'm like "please, ask your doctor about the Beighton Score"
It's wild that you mention this because I had a very similar experience to her when I was younger, and it turned out the blood pressure thing was my issue.
Upping my salt/mineral intake (partially via a water additive that tasted like licking a rock) brought me from "getting extreme vertigo and losing consciousness every time I take a shower or stand up quickly" to only occasional, relatively milder bouts of vertigo.
It's not quite night and day, but my life is a lot more livable now.
de_vertigo in the thumbnail is such a painful but accurate joke
Thumbnail? It’s the background for most of the video
In fact it becomes the background of the video just before she uses the word “vertigo” for the first time
@@DartzinhoV yeah i noticed that
I was a medical mystery too. I was young, so I wasn't told most of this, but my IGE level was so high that it was guaranteed bone cancer. Except... I didn't have bone cancer. After *years* of testing, it was discovered to be a dustmite allergy, and my only response to that allergy is that I break out in hives. Quite a big scare all for an anticlimactic conclusion, one I am VERY thankful for, and my parents were thankful they didn't have to tell me that I was dying.
If the compression socks help, compression leggings may do wonders. They did for me with my pots to the point where I can’t really go without. I really relate to all this especially the existential dread over summer. Medical limbo sucks ass. Sorry you’re going through it too
So apparently there's a decent amount of overlap with ADHD, autism, and trans people. There's also a lot of overlap with those three and hypermobility, Ehlers-Danlos syndrome, POTS, various forms of chronic fatigue, and food allergies. Might be a good idea to look into every part of that cluster, just to see if anything sticks.
And gluten intolerance, B12 deficiency, OCD, derealization.
If you already considering POTS, then it may also be relevant to consider ME.
POTS seems most likely considering the symptoms
the only thing outher it Could be is some kind of inner ear disorder but those would have slightly different symptoms
the only thing questioning here is why a doctor wouldnt assume POTS by those symptoms but i guess the thing is that we dont know the previous medical history here
@@Ladyjuliet-uv5qtIt's unfortunately fairly difficult to get a diagnosis for POTS, it's one of the last diagnoses they give.
I mean, I'd honestly say inner ear disorder because it sounds like really, REALLY bad motion sickness 24/7. Especially with always needing fresh air to stave off the impending doom of your whole world spinning and getting nausea.
@@chrisheartman9263 it could be Ménière's disease but the age of onset is useally later
and it is combined with hearing loss but sometimes certain symptoms dont pop up until later
alternatively hyperthyroidism is also a diagnosis that could fit espeically considering that there could be multipile disorders present or some outside factor changes the way the desease presents
@@pazzieanneknexx809 yeah, that "last diagnosis" thing is one of the biggest problems in any healthcare system, along with cost and discrimination.
it is technically a neurological problem that can develop at any age, usually before 25.
something with the inner ear is possible as well, but that shouldn´t be affected by temperature and humidity as much as she said it is.
I don´t know either and I´m not a doctor, but I have gathered a good bit of knowledge over the last couple of years.
Finally someone with something similar to what I have. I haven’t had to deal with mine as long as you, but i know exactly how you feel, I went from having a normal job, with attacks go from occasionally happening a few times a month to, once a week to almost everyday. It’s horrible feeling this, I have to walk around with a walker, it’s so annoying and frustrating especially since it only helps me walk because I have more balance points. Thank you for sharing your story, it means a lot to know I’m not alone, I hope you figure this out and can live life normally again ❤❤❤
Hey ❤ fellow chronic illness haver here. Ive had severe chronic migraines since i was nine years old. Its extremely hard to explain to able bodied people just what it feels like to have your health working against you. "Im used to spending my entire life walking on this biological and neurological tightrope" is genuinely the best way i could attempt to describe this to abled bodied people. I care about the people in my life a lot, i care about my situation a lot, to have to weigh the time and experiences with the mental and physical exhaustion of pain.
I grieve for the birthday parties, the rollerblading, the fishing, the people tired out by me, the smoothness i used to have in academics, movie theaters and stage shows, live music and symphonies. Getting to go to art shows and gallaries.
But theres also the moments that keep me grounded. The meetings and understanding from friends despite my having to bring a cane and a nausea bag everywhere. How they understand when i need a quiet day where parallel play is the focus. They understand when there are days i physically cant see anyone, because the symptoms are too severe. Im fucking ride or die for them, i would not have gotten this far without them.
Im still working on understanding whats wrong with me. Anxiety and stress are one of my biggest triggers as well, in the mean time if they cant figure out the big issue at least i can try and treat the symptoms to reduce the chance of snowballing. Finding healthier ways to cope with anxiety has helped, though its been gradual and like i said doesnt actually solve the problem with our bodies, but it offers relief. Things like those compression socks, or my eye masks, theyre tools to reduce the pain while we continue to be medical mysteries.
I really appreciate you making this. I am so happy to hear you have a support system. The isolation that can come from disabilities can feel like the most crippling part of it. Not just socially, but physically, enviromentally, even idealogically. Im still in the process of working through isolation, its a harder struggle than the many times ive been sent to the hospital. The implication your existence benefits from you alone is hard, i stopped counting how many times ive thought i weighed my friends and family down. Thank you for talking about it, i needed a reminder that my life can work out.
I would suggest if you have the resources to, then look into audiologists, neuro-optometrists, and physical therapy. I havent been able to stop my migraine-induced vertigo attacks, but a neurologist and an audiologist helped me with reducing symptoms while PT helped me be more mobile while attacks were active. I will admit their help most only applied to the last day and aftereffects of my vertigo attacks but a little bit can go a long way in helping exhaustion. I would be a hypocrite to ask you to stop smoking, but something that helped reduced my nicotine intake was rolling herbs like motherwort or skullcap into cigs and slowly replacing my nicotine diet when i feel like can only smoke rather than eat. If you havent already, try weighted blankets that leave your head and limbs exposed, and grounding exercises that dont require and head movement. I completely get the limited jaw movement, you may consider (i know this sounds silly but trust) looking into ventriloquist speech, using their techniques to recude any jaw movement while still making coherent speech (even with half my face partially numb) has been a serious painsaver. I really hope these help!!
Thank you for the videos you make, youre funny, well spoken, you have a deep understanding of the topics you talk about and it makes many questions for me to ponder. Thank you ❤❤
nightstand banana
lore aside, I hate that you're still dealing with this. best wishes towards your ultimate discovery and recovery
Huh
"nightstand banana" is a great musician moniker
I hope you find the reason for your symptoms - and a way to mitigate them - soon. For half a century I had a similar problem, where I never knew when I would be knocked out for a week. It turned out to be easily fixed by something completely unexpected, that medically only makes sense if you do not assume normality.
> It turned out to be easily fixed by something completely unexpected, that medically only makes sense if you do not assume normality.
What helped? I don't expect it would help others - just curious.
@@sznio THIS how do you leave that part out?
@@sznio During puberty I started getting severe classical migraines - with every symptom in the book - including brain centers turning off, making it impossible to speak or control limbs on the right side of the body. Getting over such an attack took most of a week. After some time I was able to identify and avoid most of the triggers, but I was not able to determine why I got an unprovoked migraine approximately once a month. it turns out that for males (not on hormones) classical migraines are often caused by hormone imbalance. When I got on HRT and got the hormone levels stabilised (no testosterone, sufficiently high estrogen), the monthly migraines stopped. I have symptoms of being intersex, which may explain this seemingly contradictory reason.
vertigo is such a disabling symptom. many people in my life have had chronic issues with it and all with different causes; POTS, calcium build ups in the inner ear, reynaud's, infections. wishing you all the luck with the strenuous diagnostic process
I am not a medic expert, I know someone who has same symptoms and it ended up being middle ear canal problem that was causing imbalance, she uses hearing aid now and things are better now.
Really wish you the best, I wasn’t ready to watch this vibe but happy to hear you share that with us, you have lovely friends and family, I’d do the same to you if we lived close, you deserve the best.
EDIT: Hearing aid isn’t necessarily the direct solution she went through some more medical procedures.
Your story reminds me heavily of my experience with Long Covid. I spent two and a half years under a umbrella of symptoms and situations, suffering all the while and losing control of my body and my life. There was only one thing I wanted more than myself back: answers.
I was lucky that, with time, I've clawed my way back into something familiar. But not the same. I "recovered", but I still have chronic symptoms, still carry "scars". I still live with fear, and exhaustion. And I never fully got my answers. But I know that, so far, I'm alive. I'm making it. With any luck, I'll keep on doing so for some time yet.
I suppose that's all any of us can really do, in the end. Keep making it. I hope you find your answers, my friend. And that you find a familiar place to rest your head.
You have a stranger's sympathies.
I had issues like this to a lesser extent since I turned 12-13, I eventually narrowed it down to my body over reacting to certain stressors (hot temperatures, rapid temperature changes, stress, elevation changes, hormonal changes (period). For me it turned out that my body overreacts to stimuli, causing my blood pressure to rapidly drop causing most of the symptoms you described. Because my blood pressure was already at a low baseline these drops were really severe. Everything appeared normal because when I wasn’t in an episode my blood pressure was normal enough.
Pots is a good theory to start with, add Vasovagal syncope to the research list too. My medication for a different issue ended up raising my blood pressure so I can tolerate things a bit better. I also started eating more salt and drinking more water to up my blood volume. Eating less meat was a weirdly helpful thing, I eat a lot more lean meats like chicken and more seafood.
Doctors can only know so much (and bad ones act like they know it all). Finding someone that specializes in what you’re dealing with will be hard. I hope that someone in this comment section can give you a lead that will help you narrow things down. That’s the best thing about the internet, we’re not as limited to just the knowledge we can access on our own anymore.
This video means so much to me, thank you! 🙏🏻
When I was 17 Tinnitus decided to just start haunting me. I had only been to one concert in my life and didn‘t listen to music super loud, so it seems to be mental not physical.
Then at 21 my eyes started to see a wall of 1000 tiny, ever-shifting lights that have made it hard for me to watch movies, like I used to, because it fucks with my perception of light and depth.
And 2 years ago muscles in my shoulder regions have just started constantly feeling like they‘re contracting. Despite countless doctor visits and 3 rounds of physical therapy, I have found no remedy for the first 2 and only a temporary one for the last one, that involves me doing 30 minutes of specific excercises every day. You‘d think that would atleast be healthy, but when you already have a packed schedule, issues sleeping and 0 motivation to do the excercise, waking up 30 minutes earlier and immediately doing excercises, takes a toll on your mental, far outweighing the physical benefits. I can‘t ever have a lazy day, even on vacation I need to do these damn excercises, so my muscles don‘t distract me all day. I mean fuck, 3 of my 5 senses are compromised, thats fucking crazy!
Its been a hard few years (I‘m 25 now) and the only solace I can find is also in my friends and now this video.
Back when you first mentioned your vertigo (I forgot the exact video, but you were driving at night and smoking a cig in your car), I immediately understood what a big deal it was. Idk something in your voice and the way you described it, clearly communicated to me, that that was your chronical medical issue, similar so mine. Happy you finally made a video about it, because theres a lot of things in here I needed to hear. So again, from the bottom of my heart, thank you!!
This is what took out one of Meshuggah's original members from their roster - couldn't tour due to intense spinning sensation, struggles with intense constant vertigo, especially when on busses or public transport in general.
this sucks :(
i dont have vertigo issues, but i know at least one person with them. i wish u were lucky enough to get answers and/or treatment. you look great, and i hope you feel it eventually. you’re lucky to have your family, and hope you’ll get to do things with them soon.
Before I say anything else, I want to say thank you for this video, as a disabled woman who wants to be a youtuber it gives me hope that it’s worth it to go at my own speed.
That said, I’m so sorry you have to go through this, I’m very disabled too, in a different way, I have rheumatoid arthritis and a bunch of other crappy disorders. Just last month for the first time in probably six years I made a friend irl, it was a complete fluke honestly, they lived nearby and we like the same things, but I’ve only seen them twice because I can’t leave the house without it triggering a severe flareup or at the very least being very agonising.
If only house was real and not transphobic
Our house in the middle of our house
I think I've had situations that sound very similar to the one you described at the beginning of the video when you were playing GTA4. It's happened twice to me, once in 5th grade when our teacher was describing the symptoms of the black plague, for some reason that description really got under my skin, so I left to go to the bathroom, and just collapsed on the floor of the hallway, sweating, and feeling like I was moving around but completely still, freezing, but burning up. The second time was more recent, while watching that one Wendigoon video about the Japanese guy who was blasted with a bunch of radiation and suffered in the hospital for 83 days. That time I stumbled to my bathroom, collapsed in my shower, accidentally tore down the curtain and gave myself a giant bruise on my ass. I tired to scream with every fiber of my being, to try and snap myself out of it (which kind of worked? It started getting better after that) but my roommate didn't hear that at all, so it must have been very quiet externally.
Fortunately for me, those were just isolated incidents, with direct, obvious, causes that triggered them (gruesome descriptions of bodily horror) while yours also seemed to have just been triggered completely randomly, and I don't have the chronic lightheadedness you experience after the fact I wouldn't wish that upon my worst enemy. Hope the nerds down at the science lab can get you sorted out.
This was so genuinely touching
I hope stuff gets better someday
Just replace your nausea and hot flashes with head splitting migraines and we're basically wearing each other's shoes. I've been dealing with vertigo for what feels like forever now and the constant doctor hopping and normal test results has always been frustrating. Basically having me feel like the healthest sick person, but what bothers me the most about it is what you describe in the video is the inconsistencies of all this my vertigo attacks can sometimes last hours, days or even multiple weeks and it just feels almost impossible to adapt and plan around as if dealing with it in the first place wasn't already exhausting enough so I really feel for you and I too am forever grateful for my family and friends i have because without them I'm not too sure I'd still even be here typing this comment. Well thank you for this video and all the others you always make good stuff!
I have experience with a very rare illness, 1 in 100000 people will develop it. It's a full throat paralysis, likely caused by my lupus. I can't swallow anything properly, it just stays in my throat. Sometimes it causes me an acidic pain, because the food/liquid is sitting in my throat too long. It's called Achalasia, and there is no cure, only mitigating surgeries. Since 2020, I have learned how to swallow manually by myself, & have found ways to explain and traverse through society, such as going to restaurant bathrooms to easily spit out anything that I can't forcefully and manually swallow/push into my stomach. My friends and family are very supportive and understanding. I am so thankful for it.
Doctors originally told me in 2020 it was GERD. Because thats more common with my symptoms. It took me going to a specialized gastro dr. in 2022 to be correctly diagnosed after 2 misdiagnosises from a family doctor, and a hospital doctor. And I WAS LUCKY! Many who suffer with my disability go *decades* being misunderstood, living without an actual explanation or answer, being diagnosed with psychological or physical conditions they do not actually have. My advice is to always seek specialty doctors, or communities where people have similar symptoms (as they may also help point you in the right direction on your journey.) I hope this story helps you, wishing you the best. ❤
Btw, if you ever make it back to Greenville SC, I will buy you a steak dinner!! lol (I live here, and since we both aren't compatible with restaurant settings, it's completely chill w/ me to take to go!!! lolol)
I feel terrible for laughing about the dog bed but I couldn't help but think about the puppy girl video
I have my own mystery condition. Since I was 10 I've had headaches that made my limbs feel heavy and numb, and my vision to vigniette into darkness, alongside throbbing, whole head pain. All of the symptoms get worse until it falls apart or fades. In 5th grade, at my own birthday party, I had stayed up all night not eating or drinking and just gotten out of lazer tag when I was pounded by my headache until I found myself waking from a seizure, on the ground, with a crowd surrounding me like in a movie. My mom had caught me, so my skull was fine, and the following ER visit revealed nothing to suggest why it happened. The headaches have always come back ever since. When I'm not eating, drinking, breathing fresh air or when my body just hates me, I'm brought to the floor with pain, unable to move my body as it feels like it weighs the same as a neutron star. They don't linger, I can only imagine what that would do to me, but when I'm in the throws of it I'm useless. No neurology visits or specialist opinions so far have kept me from losing control of my body and slamming my head across a toilet's rim or sprawling out on the ground at the side of the road trying to see anything at all.
Though not nearly as severe, I struggle from a severely strong gag reflex. I'm always one step away from vomiting, if I see something gross, I think about throwing up or hell if I cough a little too hard I'll be unable to speak or move that much for a minute or two. Again, though not as bad in comparison, it is really not fun and I can not imagine something that I'd assume to be ten times worse. Even something as simple as almost constant nausea can be awful if not debilitating. Point is, even if I can't imagine how bad it is for you, with how bad it is for me, I empathize with you and wish you the best.
I am so sorry to hear about these issues. It's honestly heartbreaking.
It sounds a lot like my migraines. I get frequent migraines that sound very similar to what you're describing, and you're right when you say it's hard to describe the absolute loneliness and helplessness. The worst part is the loss of "normal" productivity. Feeling like you can't even do regular tasks like grocery shopping or even hanging out with friends is almost as bad as the pain and symptoms themselves. It feels so infantilizing, when I just want to do everything right.
I hope you get the help you need and get this figured out.
Please don't play Kane & Lynch. If you have vertigo or motion sickness, it will do horrible things to you, and even if you have no such conditions the ridiculous camera shake will make worse, you will probably throw up at how f-ing horrible it is as a game.
The game that gave me the worst case of vertigo ever was by far the PS4 port of DOOM 64 which was originally released for Nintendo 64. It literally lasted for a week despite playing the game less than an hour. And whenever I even tried it again for 1 minute I couldn't continue bcuz all the worst symptoms instantly returned. I genuinely thought I was gonna die. That week still feels like a very long fever dream.
she already made a video on that game lol
LOL she made one years ago and inspired pyro too lmao
i remember this was a half life lore channel.
life is so beautiful
Still wish she made more of those
@@rddzXShard to do when you have a neurological issue
Leadhead's the channel where I'd look at their videos and be like "oh I don't think I'd find that interesting, plus it's like 30 minutes," and then I'll click on one that randomly showed up on my feed and it's one of the most profound, thought provoking videos I've seen on this platform and it's all just random bits of her life story
I also have a bizarre body/brain situation that makes it very difficult to travel around. I know how hard it can be. Mine isnt as bad as yours, though. I hope you work out what the issue is. Solidarity and hope.
I get vestibular migraines, and struggle with FND, and heavily relate to a lot of the things you lament here. nothing but solidarity and empathy your way.
also, at risk of referencing a previous video of yours- vestibular symptoms and dissociative symptoms can bolster each other. I know they do for me.
Seeing my name as a song title threw me off guard. Last thing i expected from a health discussion video was a song recommendation but here i am.
At the very least it seems, from your description, that the symptoms are getting better over time, even if just a bit, so there's hope that you could one day be able to return to at least some if not all the activities that you lost to the vertigo
I think I left a comment when you last mentioned this, so forgive me if it's been discounted, but have you been tested for Multiple Sclerosis?
I say this because few years ago the exact same sensations started happening to me. I think literally all of them - the sudden extreme heat, the constant spinning in my vision, the nausea and vertigo, the lightheadedness, I think I even know what you mean about the "morning vertigo" with the head feeling like it's moving slightly too fast or freely. I don't know if you can relate to this, but I also had weird sensations in my limbs and lower body where sometimes they felt like they weren't part of me, sometimes they were painful when even lightly touched, sometimes they somehow felt numb and very sensitive at the same time. I could lose track of where my limbs were and how to move them in the right way, so walking wasn't easy even when the nausea wasn't so bad.
Anyway, this all came and went like you describe, possibly also triggered by period of high stress and/or heat, and eventually going away but not always completely. The worst "attack" I had was during the pandemic, where I had to remain basically stationary in bed for a couple of weeks, while my best friend and housemate had to keep swapping out out my bucket of sick and pee because there was no way I could get to the toilet downstairs. I could barely eat or drink, and I had to keep my head quite still and facing right at all times or the spinning nausea would go haywire. It would be like the worst rollercoaster in the world, I felt like I was being violently span and thrown in all directions while I clung desperately to my bed and hurled into the bucket beside it. Yeah, probably the most unpleasant experience of my life.
I went to the doctor about it after it had mostly receded, along with the weird limb etc. sensations that I weren't sure were connected, and they didn't know what it was (they thought it might be an inner-ear condition but that didn't match up in the end). But eventually I got referred to the neurology department and long story short, yes, I've got Multiple Sclerosis. They scanned my nervous system and found lesions in my brain and spinal cord, which apparently is basically caused by my immune system occasionally deciding they're foreign agents that need to be expunged from the body. I think the symptoms can vary a lot depending on where it decides to target, which can make it hard to discern if you don't know what you're looking for. This comes in bursts that they call relapses, and in-between those brain etc. can recover for a while but not completely, which means untreated it'll gradually lead to more and more symptoms and disabilities worsening and piling up.
There's no cure exactly, but I'm getting twice yearly infusions of a drug that basically tell my immune system to chill out, at the cost of being somewhat immunocompromised, at least with minor infections. So while I'm still a bit more sensitive to motion sickness than I was before, I haven't had any major relapses, and the limb sensations have pretty much gone all together. I'm still told to avoid stress and high heat, but I can pretty much forget about it most of the time, which is great. I'm so lucky to be living right now, as treatments are getting so much better: the drug I'm on was only developed in the last decade!
So yeah, as a fellow spinny trans woman, if you haven't looked into MS I'd really encourage getting it checked out, and you have my utmost sympathy.
Cruelty squad music was soo fitting
its a good day when leadhead posts, although it has been amazing you are able to manage better with this medical mystery now and the strength to deal with this must be incredible ❤❤
This's the first video of yours I've seen, the algo. pushed it to my home page seemingly out of nowhere. And I've been so invested hearing your story the whole way through that the video didn't even feel like a half hour long.
It stood out to me that despite all of this, you still have found ways to enjoy life. To take joy in the little things because we don't know what we have until it's gone. That's hard enough for people as is, and you're doing it with this awful life-pausing unknown hanging over you. That's immense emotional strength and I'm really impressed. I hope you find an answer soon to what's happening, and ways to get back the life you deserve to have.
Shoutout to your roommate family and gf for making all this manageable.
i hope someone - anyone - can figure out what could possibly be going on that's causing this. thank you so much for sharing this; i hope you can get answers for all of this. please take care of yourself to the absolute best extent that you can.
(lasko wind machine fans are the best fans i've ever used lmao, money very much well spent)
you are my favorite youtuber. thank you for sharing your experiences, and I desperately hope you continue to make videos for as long as it brings you joy
This spoke to me like few things ever have. I'm sorry you have to deal with so much, but so happy you have good people there with you. It really makes all the difference.
Mentioning that feeling stuck somewhere is a trigger for your symptoms is entirely relatable for me. I struggle with anxiety and agoraphobia related to my ibs, and i'm terrified of being stuck somewhere where i can't "handle business." It makes going out for me, even just to the walmart 5 minutes from my house, an entire anxiety-addled ordeal. It's somewhat comforting to know that I'm not the only one
Everything you mentioned minus the restaurant are exactly what triggers my anxiety the worst, this makes me feel so seen omg
i have never felt so seen by a video this means so much to me
No idea if it could be this, but I heard of this weird thing where some crystals that form inside the ear can sometimes get dislodged and end up bumping into the regions that sense orientation instead of sound and that can mess people up; and there are some specific head movements a doctor can teach you to get the crystals to fall back into a safe position. I don't remember the name of the condition, but it might be worth asking your ear doctor about it.
I don't have any words. I couldn't imagine going through what you have, or what you're still dealing with. You deserve so much love. I'm so glad you've surrounded yourself with people who can and do provide that love. And thanks for making me want to play Minecraft again, haha. :heart:
I've got a different set chronic issues but watching this video you just kept describing things that were so parallel with my own experiences its was spooky. I've been lucky enough to have my symptoms improve over the last couple years and I hope the same can happen for you too c:
I found this video highly relatable. Every single symptom you've described is something that dominated my life for about 9 months in 2018-2019. In my case, it turned out to be chronic hyponatremia, and it wasn't discovered until a more acute hyponatremic state caused me to pass out and have a seizure while unconscious. If you think there's any chance this could be it--you'll want to check for whether you're getting enough electrolytes into your system, or whether you're drinking so much water that it's draining those electrolytes, as was the case with me. You can buy packets that provide extra electrolytes if so. It helps me out a lot as my body requires a ton of extra hydration, and so also a ton of extra electrolytes, in order to be able to sweat at all and not be constantly constipated. I used to also need extra water for temperature sensitivity and other reasons, but that has subsided as I've become more healthy in general.
I'm so sorry to hear that you're going through this for so long without answers yet. I hope you can get some soon and get back to do the things you love doing
I had a very bad streak of migraines+vertigo episodes this year that resulted in me going to the ER and getting even the doctors scared of wtf was happening to me.
After nothing working, the doctors realised I was probably having a massive panic attack and gave me some medication for that. That in convination with magnesium and other measures to deal with the migraines helped me immensely to reduce it.
I've been better after that. I always get little vertigo snaps that scare me but everything is VERY much tied to being stressed ans unhappy. Starting transitioning has helped me immensely reducing them.
I hope yall get better, you deserve it.
this is horrifying to think about, what you've described sounds like what i experienced the first time i smoked way too much weed but times 50. i can't imagine feeling like this 24/7, i'm sorry this is affecting your life so much. i hope you can find a diagnosis one day. But i'm really happy for you that you have such a great support system and so many people who love you and care for you. that's beautiful
It may sound like I’m downplaying it but it maybe anxiety.
The “fight or flight” part of the brain is the same as the “rest and digest” part.
I don’t have the particulars on hand. But I found out that is also connected to kidney issues which, my mom is dying of. And it turns out she had the same anxieties and pains, but she masked from shame her whole life.
But no matter my diet, exercise, social, work, and financial situations, I get these intense anxiety attacks and get sick all the time.
But yeah I miss the world too. I was always adventuring as a kid. But I can’t anymore.
But I’m so glad I’m not alone. Another 26 year old trans fem fighting the same things 😭 the doctors always dismiss it as diet, weight. And therapy isn’t enough to stop it.
And like. It took so much to overcome the struggle of asking for help with it.
But I took a walk to my old work place, dressed up cute, listening to my favorite song, was feeling a bit insecure but a random woman told me I had a beautiful smile and it seriously made my day. I had to lay in bed for days from how tired the walk made me. And like
I used to be a cross country runner. But I can’t run without pushing myself to exhaustion (moving for more than 2 minutes)
Hey Penelope! I would like you to know that I don't mind if your uploads aren't as frequent as you would like, I have been a fan(pun not intended) and wait for your uploads ever since like 5 years or something like that. it's always a delight when I see a video of yours, thank you for the countless hours of fun and reflections upon myself you've given me, greetings from Chile
Putting Vertigo as in the map from CS2 as the background while you're talking about vertigo is just so... subtle (not really sure what word to use)
Its an allusion. The reason you dont have a word to use is that the adjective form of allusion has a different meaning
@@danka1167 Yes, I suppose that's it
My hearts goes out to you! I'm also a medical mystery after suffering from vertigo, difficulty to walk on my own and vomiting that left me in the hospital for 2 weeks. Brain and full body MRI, spinal cord fluid test, bone scan and any other test under the sun came out fine and yet, 2 years later I'm still suffering (although recovering, very slowly) from lack of feeling on my right leg, frequent mild headache and my left eye slightly popped out. I dont do drugs or smoke or anything else and still young which made this whole thing even more weird
I've dealt with the same thing off and on for a while now. After a LOT of tests, I've just come to accept the advice of a therapist that what's happening is a feedback loop of stress and anxiety. For me the original incident wasn't vertigo, but heart-related. But everything after that is exactly how you described it, being constantly lightheaded and vigilant. The issue is that my nervous system was shot, and that will cause symptoms like lightheadedness, which I then get anxious and worried about, which only adds to the stress. It's a horrible cycle, but one that can be lived with ❤
i think i mightve had one of these back in 2020 where i suddenly passed out and had an intense hot flash and the world was spinning, i could never imagine living with the constant fear that one of those could happen from basically anything at any time. you're a lot stronger than i am
You got this girl! I hope you get a diagnosis :D
Not much to say specifically on the topic. I just wanted to thank you as ever for putting yourself out there and taking care of yourself. I often take a while before I watch your new videos because I have to make sure I'm in the right space for it (they're never that heavy but I just worry I might react strongly). Either way, I wish you the best and I hope you can continue to find some form of relief for this issue.
never knew “empathetic nausea” was a thing, but yeah it definitely is!!
This video made me cry so much, thanks for sharing your story 😭
honestly, this has me reexamining some of my own bodily troubles with similar (albeit far less severe) shit.
thx & be safe
I always love how you present you and your vids so much every time! 💙
When you said something to the effect of “that’s the thing, I have no idea how to describe the feeling other than just ‘lightheadedness’” I felt so indescribable because that’s exactly how I worded something I went through for years upon years after I had a brief contest with epilepsy. Once I stopped having seizures for good they were replaced by what I only called “auras” where I’d just suddenly have to stop what I was doing and lie down, with a general feeling of intense malaise and lightheadedness, almost like my vision shifted but it was never actually impaired. Mine seem to have been much more infrequent and, eventually, I was able to push through and I’ve only had about 2 this year and they were the kind I can push through. But I also ran the gamut of accepted and holistic medicine until I gave up and I know how absolutely horrible it feels to go through that. I hope you find a diagnosis (very curious for my sake too if we have a similar condition) and are able to find effective treatment, or it just fades slowly over time like mine did.
Haven't watched past the first 45 seconds yet, but compliments on the intro. Good use of a narrative hook that makes you want to know more
I'm so sorry for you... My nausea problems are nothing compared to what you're going through. Wishing you the best for the future!
Haven't watched yet but I wanted to say hiiii!! Hi Penelope!!! :3
on the idea it might be linked to humidity; what about pressure? i have pots and many other disabilities and pressure changes (which is often accompanied by rain) can take me out hard. pressure and temperature are the two big ones for me weather wise
I deal with similar symptoms, though not quite as extreme. Heat management’s an especially big issue, i always keep my car’s AC in working order because of that. The times where i feel vertigo and wooziness tend to last for shorter periods, as long as i get to lay down and let my body “reset” but the chronic fatigue really gets to me. Like you, i’m also self-employed, for similar reasons. Might not need or have as much support as you, but i count myself lucky i have the support i do regardless. Hope you can have more good days, and figure something out to make it less intense.
On a similar note, if i remember correctly Hideo Kojima deals with a lot of motion sickness himself, and it’s part of why metal gear is a slower-paced stealth experience in the first place. It’s also the reason why the fixed camera persisted in the series up until MGS3; too much spinning the camera around was nauseating
cruelty squad ost works so well for this video
For me this sounds really scary, because a few years ago I had this 3 year streak where every time winter was about to start I would get terrible vertigo. Like the whole world would slowly start spinning one day and then I would I would wake up the next day unable to get out of bed because it was so bad, but then all of a sudden it would stop randomly. I went to the doctor and it was a seasonal allergy symptom where fluid would build up in my ear, but I don't think I ever found out why it would randomly stop. I'm glad this hasn't happened to me again in a while, and your situation sounds like the worst possible outcome of what happened to me. I hope one day you can have some closure too.
Thank you for sharing! It's been really relatable, and thus encouraging(?). I don't have vertigo (well, I did have some last year, but now it's been fully gone for a while, so I hope it won't be back), but I have other issues that result in very similar problems (troubles going outside, not liking being stuck, panics, missing out on life). Day-to-day stuff is manageable, but once that is solved, you realize how much you're still unable to do. Hedonistic treadmill or something.
Although, in my case I'm pretty sure that it's 95% due to anxiety. I wouldn't be surprised if your symptoms were, at least in part, due to psychological reasons (like the "PTSD" you mentioned). Our brains really are weird. (I hope it doesn't come off as belittling or downplaying)
Again, thank you for being so open. I hope you'll feel better, or at the very least not worse.
♥
I actually have about the same issues which is why seeing this is so strange. I’ve went to multiple doctors and specialist, I had wires on my head, mri’s, I went through neurological doctors, ear doctors and much more. They basically told me dizziness is one of the most mysterious things that doctors haven’t fully figured out. They assumed it was vestibular migraines but they said they aren’t sure themselves. It’s been about 4 years and I experience it frequently still but it goes away and comes back.
i think the first video i watched of yours was one on dishonored. or you were just playing dishonored in the background i can't remember. either way, funny that the first video i've seen from you in years is also one i relate to very personally ^^
long story short, i'm in my early 20s and developed a panic disorder from a bad experience. growing up being a troublesome kid and only really having friends in that ballpark, i had a hard time getting my best friends used to the idea that i just can't do certain things anymore. it was seriously degrading to tell these guys i've traveled states with that i suddenly can't get in their car because it makes me want to rip my skin off. i'm absolutely blessed to have them still there for me because they actually cared. very heartwarming and mindset altering to say the least.
getting in the way of yourself like that changes you, changes how people see you. i've done my life very differently than how i imagined since then and it absolutely hurts knowing it's all because of my own head. but i'm not even close to giving up. when i let go of that rope there's no coming back. there will be a day where i wake up calm and my persistence pays off.
I can sympathize with this video, especially the parts about feeling like a burden and having people who can support you. On one hand, I was diagnosed with Nephrotic Syndrome a few years ago (which is a collection of symptoms caused by kidney damage, my particular variant was a result of my immune system's executive decision to ruin my kidney's life) and, predictably, had to go through a permanent dietary change and had to keep popping immunosuppressive pills afterwards. On the other hand, if I didn't have the proper resources (read: my parents), I wouldn't be able to keep it up, and I would just be going through back-to-back hospitalizations. In short: If you have people who can help you, you'll be able to fight on, and take on the next day, and then the day after that, and so on. Stay strong!
being sick forever is a nightmare.
i've lost so much of my life to whatevers wrong with me.
just did less and less over time until i ended up sitting in my room all day for months at a time.
The loneliness of it all is the worst part. The few friends i have make life worth it. But they're all so far away that visiting might be a once in a life time thing for me.
And i rarely feel truly well enough to spend time with them. Hard to play games or watch movies or chat when i can barely see the screen.
Sometimes it feels that my condition gets worse the longer i spend physically alone. Never feels like i can actually relax and feel safe by myself. And i havent made friends with anyone i could actually meet in person in many years now. its gotten harder to stay motivated, to keep struggling. Harder to even talk to people.
But gotta keep going. If i don't collapse mentally again, i'll get my bachelors degree next summer.
Its good to know you have a supportive environment. Without my friends i likely would have dropped out of uni already. Hopefully you can figure out whats wrong and a way to improve/fix it.
thanks for the video, leadhead, was interesting learning about this, I wish you the best
I hope you get back to videogames soon. The last few videos were just about you ans that's just not the reason I subscribed.
I watched that one video where you sit in your car at night or your coming out and that really resonated with me, but since then this channel was mostly about you as a person.
I really don't care for you as a person like I care about videogames. I'm really not that into parasocial relationships, but I really loved your writing style on games and I hope you'll get back to that soon.
I really don't mean that as an insult, I just don't know you at all and don't want to (as long as this is a one sided thing), I just loved your videogame stuff :(
As someone with depression, I can definitely relate to feeling useless, and being unable to take care of yourself and the people you love. That in and of itself is hard.
i am also a "medical mystery" at the moment. though i have a totally different set of symptoms to you, i get how it feels. not knowing what the problem is is so so scary, and makes dealing with the debilitation so much worse. i cant manage anything. why? no clue! sure hope its not shortening my life while im not looking! wishing you the best with finding answers and hopefully treatment 💛 50 years ago, SMA and Cystic Fibrosis were death sentences. 100 years ago, our best idea for celiac diesease was feeding kids pounds of bananas every day. these are treatable conditions now! you and i can be next. or at least we have to hope so.
I've experienced what you're talking about, only for a very brief amount of time and thankfully it doesn't happen often, but I'm still very prone to feeling dizzy allot of the time, i thought it was normal, RIP us i guess, i hope you get better someday
I wish you well, Leadhead!
I have a similar although far less intense experience sometimes, especially in the bathroom when it is very warm and moist in there, I feel like I am starting to pass out, it never happens when I shower, but it does happen when I am using the sink or something. Luckily it does disappear when I get out of there for me.
Dramamine is a bit of a double edged sword! It can both help against these symptoms and cause them. Funny that.
I have had similar symptoms for a while but i think it might have been my anxiety disorder running out of control? They have substantially subsided by now. Do you breathe normally or do you notice any issues in this regard?
yk while watching this, im sitting in my bed with a lot of pain in my calves and when u were talking about missing the things u used to be able to do, i started thinking about what i missed too. i started having leg pain randomly after i got sick nearly two years ago, the pain was fine at first, it stopped me from doing some things but im a homeschooled teen that doesnt rlly go outside so i didnt care that much. the pain slowly got worse monthly, it went from just one heel to both my legs cycling the pain daily. i started freaking out and asked my mother to buy compression socks because i rlly didnt want to lose the ability to walk around easily but i did. the compression socks help but i still cant walk as much as i used to, i cant go on long walks to the park, i can barely go to my backyard or the balcony. i stare out my bathroom window sometimes cus its so nice to see, smell and hear nature but i know if i go outside and sit down, i probably wont be able to get back up on my feet. i havent been going through it as long as u have but idk its nice hearing someone talk about stuff like this, especially feeling like being a burden, thankfully i also have ppl who will help me when i need but still sucks to deal with.
In mid life my father started to get vertigo and dizziness attacks, spinning and loss of balance. This was diagnosed as Ménière's disease and alleviated with tablets and a surgical procedure whereby "gromets" were positioned inside the inner ear, presumably to control some physical aspect of the condition. From memory he had to return to hospital a couple of times I think when the gromets got out of position. This was all over 50 odd years ago but it might be worth looking into...
I have POTS and it's not a fun time. I really wish I could stand up and walk a short distance without having to immediately sit or lay down on the floor to avoid collapsing
I used to be a really hardcore kratom addict. One of the reasons i stopped is because it would give me vertigo to the point where i couldnt walk. Thankfully for me it went away once i got sober. Just being stuck like that is terrifying 😅
I completely relate to this. I have a weird spinal issue, that puts strain on my bloodflow, making me extremely unfocused for the most part of the day, and makes me have these weird tingling feelings every time i move if i havent moved for a long time before that. And absolutely nobody can tell me what this is and how to fix this permanently. I've been warlking through doctors for two years straight until i gave up. Now im just living with it. Waking up is hard as my entire body is in pain from stiffness, thinking is hard if i havent had a walk that day, working for more than 4 hours a day is hard from the way my body naturally slouches despite all of my efforts to not do that. If i get into a feedback loop of not moving, feeling too weak to move and making it worse by not having the mental energy to force myself to move, i can skip entire weeks like that, just feeling terrible and having so little focus to not notice days go by. A medical mystery is a phrase that also crossed my mind around the time i gave up. I havent gave up on life though, and fuck me if i ever will. Adapt, survive, thrive. I guess thats just how curses feel like when you live in a fantasy world.
Give us a way to fund a really expensive doctors visit that could 100% find out what's going on, and by god we will fund it. We will find a way, not just because you make great video essays, but because you're a fellow human being who deserves a fair shot at life. Go forth and kick ass, Penelope.