My Brain Melted - An Encephalitis Story

I'm doing this in one take I don't care if it's bad I don't care whatever I don't care if I stutter or say something stupid it's going in one take I can't I can't tell a story like a million times it's gonna take way too long so oh guys uh it's been seven months I think since I've seen you last I've missed yeah um I haven't been doing anything fun for those seven months in fact quite the opposite I'd say the seven months have been uh the most painful excruciating and traumatic months of my life probably ever I really doubt I'll ever go through anything like this again it's been it's been literal hell uh and you might be wondering what went down well something was wrong with my brain and by the time I got diagnosed the diagnosis was post-viral non-recurrent encephalopathy which is a little bit of a weak diagnosis it just means you know maybe you had a virus and after that virus your brain just went wacky post-viral post virus encephalopathy something wrong with your brain encephalopathy is different than Encephalitis where Encephalitis your brain is inflamed encephalopathy is like your brain's acting up and we don't know why we never found the numbers we never found that the exact reason why your brain was acting up now personally I think it was Encephalitis but there's just not enough evidence to back that I think it was just a moderate mild moderate case of encephalitis but we'll never know for sure the purpose of this video is well it has multiple multiple purposes um I wanted I wanted to tell you guys why I've been gone for so long and I also kind of want people to Bear witness to my suffering because it was so bad and to get at least a somewhat somewhat of a peek into what actually happened because not you know not many people in my family know what happened um exactly they kind of get the general idea but it's only select few people know the brutal details of what I went through and not just me my twin brother went through over the last seven months so I want people to Bear witness to my suffering because it was so bad I don't wanna I don't want the story just to die out or for me to just deal with it inside I want you guys to be my like thousands of therapists I guess and I just want it documented and to uh as best as I can never look back at it ever again not that it's over I'm still dealing with the repercussions of it uh and I imagine I will be for quite some time I don't know how long I don't know if uh you know my my if I'll ever be exactly the same I don't know just to be honest I don't I don't know this is also my chance to tell the story where I'm not like pleading with a doctor because when you go to a neurologist and you're like uh my brain is going haywire I need help like you have to make your case otherwise they if there's no nothing on your MRI or there's no data to back you up it's just your words that there's something wrong with you and that's kind of what it ended up being so I've told the story like a bajillion times but in a in a scenario where it's like for me life or death like if they don't listen to me and help me I'm screwed so this is an opportunity for me just to tell the story how I want to tell it without feeling like I'm pleading my case to somebody so without further ado here we go I started back in September of last year September 10th 2021 was the first day I had symptoms and it started pretty nonchalant I just started like with fatigue I was tired and I live in Southern Idaho and with my twin brother and I just started getting tired and um as the days kept going on I got more tired more tired had to take on naps very often and I got a lot of malaise just a feeling intense feeling of grog and they just kept going for a week and then two weeks and I'm like what's going on here because if I'm getting sick like why is it just fatigue in malaise and maybe like some diarrhea or whatever but no runny nose no sore throat and it's going on for two weeks now and it's just getting worse uh really kind of weird but I just figured you know maybe it's covet or something so I'll go get go get a covet test and it's negative at the same time my twin brother Eric uh which I do actually have a twin brother who might as well call him in hi what what am I yeah okay I exist I edit his videos see all right I have a twin it's real okay bye-bye so as at the same time as I'm developing this my twin brother is developing the exact same thing and uh then it starts getting weird like it at first it was like maybe I'm getting sick I'm just super tired but then starts getting weird um I start developing this intense numb ball behind my forehead it just feels like someone injected injected lidocaine behind my forehead and then I start feeling really mentally unstable like and the inside of my brain it feels like my brain's going this is fine this is fine I'll oh God oh God oh God this is fine this is fine oh God oh God oh God I'm just like teetering back and forth so like mentally I'm starting to feel like unstable and I remember I was walking with Eric we were walking our dog and I asked him I was like do you feel like you're like all of a sudden mentally unstable and he's like yeah what the heck is going on with that like I don't know we still think it's covered because it's just so weird it's a weird illness whatever it'll we'll get over it in a matter of a matter of uh weeks or something I remember saying specifically one day when I was feeling really bad I said I bet I'll be better in five days and a little bit I know it's gonna be like another eight months okay so whatever I'm feeling fatigued whatever I have this not weird numbness behind my head uh I am still delusional I think it's covered go up to northern Idaho to um visit my parents no I can't remember I can't remember the story listen the story's not gonna be perfect I can't remember the story's not gonna be perfect I can't remember all the details it's seven months but you guys will get an image of at least of what what went down so I started developing this num the numb ball behind my head right and then mental instability and then all of a sudden I'm having these weird like massive perceptual shifts where in a split second like the world becomes void and loses all meaning and like becomes like the texture of the world and how I feel the world becomes totally desolate for three hours and then it'll snap back to normal and I'll have these kind of weird perceptual shifts all the time it feels like the devil's inside my brain like yanking on different levers and stuff and making me feel different ways and not just emotional states but like experiences like states of being like really weird stuff and I still am in denial and think it's coven or something like that so I get tested again for covid and that's negative and I go get tested for um mono and it's negative somewhere around this point in October so it's been over like a month around a month I have a video of me talking about how I'm feeling hi future Adam um this is uh sick Adam from the past uh day 15 of being sick I hope I hope you're happy I hope you look back in this and go wow that really sucked but I've almost totally forgotten about it my life is so great that uh never even think about that time where life is about the worst thing on the planet um or maybe it's a year from now and you're watching this and you're like oh my God I'm still sick either way you're looking good catch you later so they'll have weird perceptual shifts and stuff uh but it's not even as weird as it's gonna get um the the malaise is building to the point where it's like I feel like there's a million pounds on me like I'm covered in molasses like it's a similar feeling too when you like have a really heavy nap and then you wake up and you're super groggy it's like that but like on steroids and then I start developing and then I start developing neurological issues uh I was grabbing a bottle of Advil and I turned it over and my hands started shaking like this and like the whole Advil bottle was rattling I was like that's really strange um and then over more weeks I started developing more neurological problems where I'd be walking and my legs would give out underneath me as I'm walking and um for a stretch I had a difficult time talking I'd be stuttering and slurring my speech and like words would come out wrong I remember I was walking by a neighbor who's walking his dog and I said hey nice a cute dog and instead it came out cute dog I couldn't talk words weren't coming out of my mouth and I was walking my dog and I was like trying to talk and I was saying I can't talk I can't it's exactly like that I can't talk and my legs are giving out my hands shaking I just started crying because I'm like what is going on with me it's been over a month of like just weird happening and I now can't talk and I'm walking weird and my my hands are shaking like I have Parkinson's disease I start just crying and I get kind of um I just get scared I don't I don't want to be home anymore alone with this um I had another roommate at the time but I just was mostly alone I didn't want to be alone anymore so I took a trip up to my parents where my brother was already staying he had we had taken a visit there earlier he developed kovid and so he stayed there and I came back home to Southern Idaho and then when I started developing all these weird neurological symptoms I headed up North so I arrived in northern Idaho and I'm telling my parents about like what's going on like this is kind of really weird um my hands are shaking I don't know like my mom noticed my hands shaking I'm pointing at her I bought her an Apple Watch and I was pointing at it uh weird flex but okay uh and my hand was shaking she's like why are your hands shaking I was like I don't know I don't know why my hand's shaking thanks for asking I have no clue I wish I knew what was going on and I expressed my concerns to my parents and they're kind of um just kind of cluing in that something's going on but they don't know that it's that serious and I'm not really making it as big of a deal as I should because on the inside my brain feels like Satan is riding me it is it feels horrible on the inside um and this is uh at the end of October entering November and I feel just terrible like the malays is so intense like like every morning I can't talk to anybody because it's just so intense and then things take a really wild turn so I'm already not having a good time okay I I've had tons a ton of malaise tons of fatigue uh it feels like Satan's riding me on the inside of my brain um and I mean seriously it just feels like inside my brain just this weird energy state of just awful and my hand's shaking my leg keeps like buckling out every time I go for a walk and I'm having trouble talking I'm trying to talk to him I can't talk to my parents so instead I just stay quiet all day because I don't know what's going on I'm not raising the alarms like I should because if you're having these kind of problems you should be like kind of freaking out a little bit but I kind of keep it low-key I could bring up my problem so I'm not making it as big of a deal as I should and then things get really really bad and this is after I took some CBD oil for sleep to help me sleep it wasn't really for me to help me sleep I was taking it just a test run it for my brother because my brother was having um insane insomnia just literally because he's lockstep going through this with me um he's getting zero sleep like most of the time you get four hours maybe um four to six hours when he's lucky and a lot of times he's getting close to no sleep at all so he's having insane insomnia so I'm testing out the CBD really low strength like CBD THD oil like microscopic dose of that stuff and I take it I'm playing Scrabble I kind of feel it kick in uh it's a little bit like calming soothing whatever okay I've smoked I'm gonna be honest I smoked a big rip out of a bong before I'm not an amateur when it comes to weed okay so what happens next is a little bizarre um I go to bed that night fall asleep immediately so I guess it works and then I wake up at uh know like two three a.m somewhere around that time and uh I just have this nightmarish sinking feeling like this like my my heart is falling out my ass or something this nightmare depressive sinking horror impending doom kind of feeling and I'm like in bed I'm like what the heck is going on and I I stand up out of bed and I'm like I think I'm about to have a panic attack I've had a panic attack before so I'm familiar with them and I'm like I think I'm about to have a panic attack and I think maybe I guess I guess I'm just high like I guess I just the weed just kicked in so I go take a bath I'm still at my parents place go to the guest bathroom run some water take a bath I'm like just stay calm just a little pass so I'm browsing my phone eventually the feeling does pass but it wasn't like I got high it was like it was like panic and and um and I've I know I've people associate CBD and THC with panic trust me I've been I've been pretty up before um and I've had no problem with panicking um but it's just insane like stimulation in the brain and I'm just like writing it out and uh eventually that feeling passes um I go back to bed next day we're getting to the weird stuff I promise you this isn't just all boring story um next day I wake up feeling super hungover I feel like I drink like 20 beers I felt terrible um make it through that entire day still have the wub Wubs in the head and everything you know numbness and all that make it through the entire day finally it's bedtime get ready for bed uh we're staying at our parents place still and I go to bed and I lay there and then my brain lights up with intense panic and I just start shaking like I'm laying in bed and I start shaking and I'm like what the hell I'm just filled with intense panic and I am I text my mom I say I can't I'm panicking I can't stop shaking and I go upstairs and uh I look at my mom's face and my mom's face looks evil like her eyes look like these black beady eyes that are evil and I'm vibrating and shaking and I start crying because I'm it just filled with intense like Primal Fear and she's like what's wrong and I'm like I don't know I just can't stop I can't stop shaking and I'm violently shaking and violently crying and my my dad comes out of his bedroom and his face looks the same way it's a really it's kind of hard to describe as a perceptual thing it's not like her their faces looked literally like morphed or something like that but it looked like perceptually they were evil like I was looking into the eyes of the Antichrist basically and uh I don't know what I'm saying what to say I'm I'm crying I'm shaking um my brain feels insanely agitated and uh I get the feeling that this is left over from the CBD something it just agitated my brain eventually we go to the ER I get some Ativan I get enough Ativan to finally go to sleep the funny thing is uh two milligrams of Ativan and I um we go home finally and I can finally start trying to sleep and my dad comes into my room and wakes me up and he asks asks for my gun because he wants me to be safe but the funny thing is I was I was dreaming very happily because Ativan makes you feel pretty good for a nice relaxed I was dreaming very happily about butterflies and wonderful times and then my dad wakes me up asking for my gun I thought that was kind of ironic now I can't over emphasize how my parents faces looked they looked uh evil and for the next probably four or five months that's what people's faces would look like they would look like evil very staticky and very beady-eyed super evil looking and I was just visiting my parents house I ended up staying there for like this all the way to April so like five months at their place but anyway I wake up the next morning and that morning and for many mornings after that I am fighting off panic attacks constantly constantly fighting off panic attacks I I wake up and all the world will be swirling around me in this nightmarish panic and like it's dizzy how how much Panic there is my heart is like leaping out of my chest but I know how to handle panic attacks I I've had them before the worst thing you can do is try to fight off a panic attack so what you do is you just you just let it happen if it's gonna happen it's gonna happen uh but that didn't help at all I would sit and like be singing to myself and just kind of rocking and like trying to relax and that feeling of intense literally having a panic attack wouldn't go away for hours so I struggled with that for for weeks and also right after Oh yeah and when I had the whole CBD thing it was taking a bath I had this intense olfactory hallucination of like burning metal and um so there's just some weird stuff going on like see the CBD THC oil like it really agitated my brain in a weird way like what caused an olfactory hallucination which is really bizarre and then after that I'm dealing with all these panic attacks and the world is super staticky like now I have what's called visual snow the whole world is like this filmostatic and I'm looking at my parents faces and they look in my brother's face when my other brother's face and they look super statically like static film over the face and evil and so I'm eating dinner with my parents and everybody and I'm just looking down at my plate because when I look up like their faces look horrifying and um I'm not sure at what point I expressed to them that their faces looked horrifying but it definitely wasn't soon enough my twin brother at this point has not hit this level of uh psych symptoms yet but uh he will in due time it was like the CBD oil like triggered it for me but for him it just took longer started September we're in uh November God damn it I'm mixing things up whatever sometime before the THC CBD thing I had to some auditory hallucinations I was watching a movie with my my uh I have an older brother Bradley and then my twin brother Eric I was watching a movie with him and um it was the quiet place too not very good from what I remember and I heard my brother laughing to my right and I look over at him and he's not laughing and then I heard Eric to my left he called out something about the movie and as he's calling it out I look over and he's not saying anything and I feel like I'm like living in this dream world like I'm totally separate from reality everything looks like a dream and Eric turns and looks at me and his face looks very bizarre and far away and distant and uh very strange so that was before the THC thing after the THC thing my life is just hell um I become like incapacitated my brain is completely filled with this nightmarish electrifying painful fog in the world around me is just horrifying in in a way that I wouldn't really wish upon anybody I can't interact with the world at all it feels extremely bizarre and those perceptual shifts I had earlier become more magnified where I have these intense feelings of disconnection from reality and and like my brains in a vacuum sealed ice pack and I can't feel anything and I can't I can't feel anything I can't feel anything it's like a horrible feeling I can't feel anything I can't interact with the world around me and like it's not just like an emotional state like anhedonia where you like can't feel emotions very much it's just it's a whole new State of Mind of absolute torture so we go and see a neurologist because I'm having you know uh I think probably it's by November december-ish I've had kind of my parents are a little bit more alarmed about what's going on but really we Eric and I held our tongue pretty pretty much way too long on the symptoms even when we're staying at their place like we just didn't bring a ring the bell at some point uh prior to this I went and saw a doctor to get some basic labs done before I had all this psych symptoms start developing all the labs came back normal and I wanted an antibody test done for covid and that came back negative and I told her I had had an all auditory hallucination and I want an MRI because I have my hands shaking as well so I had an auditory hallucination my hands are shaking there's something wrong with me I want an MRI and she said well let's let's just wait on it a couple months because usually these things if you need you know an MRI like they'll get worse instead of better and I'm like please Are you seriously gonna make me wait two months to see if I need him or like why would you want to wait for things to get worse Anyway by December I actually go see a neurologist in northern Idaho as my where my parents live and she orders an MRI go get it done uh it comes back normal I don't even know how to tell the rest of the story it becomes a haze from December through April is this Haze of trying to make it through every day where everyone's face looks like the Antichrist um the static film is everywhere I'm having these horrible psychotic shifts where it like all of a sudden the whole world will become you just become psychotic like you don't it's hard to explain unless you've experienced it but you become psychotic where you feel like you could hallucinate at a moment's notice my neurologist runs some labs and some certain Labs come back high for corporate porphyrins which um Can indicate a condition called porphyria which can cause psychosis so we thought we might have porphyria and with porphyria you have to have a very limited diet to avoid these attacks that can cause psychosis and so for like a month Eric and I are eating like plain noodles and chicken while having these psychotic breaks and uh these massive perceptual painful perceptual shifts as well as just being it's just being wrapped in this intense fog where you can't interact with the world I really can't do it justice it's excruciatingly painful um just trust me on that so we'd get some DNA testing for porphyria to see if we have it and of course we're hoping we have it so that we at least have an answer to what's going on why my hands are shaking why I can't talk why am I filled with these malaise why am I having psychotic breaks and the DNA testing comes back negative so that's the first of many uh devastating blows like we still don't know what's going on um we get an MRI it comes back normal uh well like what is going on it's like all inside my head and nobody can see it it's all these internal symptoms and I I'm telling my doctor I'm like please just don't send me the psych because this is not just a psych issue we're having some sort of neurological issue and she reassures me at this point that um that yeah I just obviously have neurological issues I have some neurological deficits had a little bit of clonus in my ankles um lip droop hand trimmer and maybe a couple other things but I'm just I'm suffering every day uh laying just mostly laying around we'll take our dog Watson on a walks uh but besides that I have to just lay down getting a ball and just tough the day out and it's a lot of days at it for the past yeah things things got pretty bad I'm just checking making one of those videos so you look back and maybe think gee I'm really really glad that uh I'm not back there because man it blows so hopefully you're feeling better I was saying this exact same 14 days in 100 Days Later here I am so hopefully in a hundred more days we'll see a little bit more Improvement God help me I love you I'll see you see you soon bye so first we're Clinging On To The porphyria thing and hoping that um comes back positive comes back negative uh MRI MRI is clean so we're like next is spinal tap because we got to see if there's some antibodies maybe we have autoimmune Encephalitis or some sort of encephalitis we want to see if there's antibodies for that and so we get a spinal tap done um and when I'm getting the spinal tap done I'm leaning over a a desk and not the best way to do a spinal tap as I come to find out um just because it can mess with the numbers but uh as he's doing the spinal tab he says wow your pressure's super elevated and that was the first moment where I was like thank God maybe there's something wrong with me that people can actually see because so far it's like nobody can see anything but I'm losing my goddamn mind I feel absolutely insane I had to be asleep I had to sleep in the same room as my my brother with the lamp on because I'm having nightmare psychotic breaks and I'm filled with panic and he would sleep on the floor for me so we're not sharing the same bed but he'd sleep on the floor for me and I um I would sleep on the bed with the lamp on and one night when I tried to sleep on my own my brain would just light up with Terror and I came into his bedroom and showing a flashlight in his face to wake him up and uh here's a photo of him mocking what I looked like so we get a spinal tap and we're getting results in from the spinal tap and nothing negative negative negative negative negative negative negative everything's negative can't get anything positive finally one thing comes back positive myelin basic protein it's a protein in your myelin sheath and when it's elevated it can indicate demyelination which is common in multiple sclerosis but I didn't have it the other indicators of multiple sclerosis did not pop up but it indicated that there could be some demyelination going on as the outer coating of your nerves are being destroyed and the proteins not filling up your spinal fluid into a protein shake but as it comes as I come to find out neurologists really don't give a about anything that's non-specific if it's not diagnostic they don't care so they come to find out my neurologist does not give a damn about myelin basic protein so one of my on my second appointment is my neurologist all the stuff had come back from the spinal tap completely negative no antibodies nothing um and I I make I plead my case with her I tell her I don't even know how I'm kind of having this conversation with you my brain is so filled with brain fog and I feel like I have Alzheimer's I spend most my day laying around and staring because my brain cannot be occupied by anything but suffering and I I plead my case if there's any sort of autoimmune response going on uh I wanna I wanna try to treat it like can we just try treatment um when the treatment would be intravenous immunoglobulance would be one the other would be steroids um and at that point she said no because there have been there are a few more things that had to come back from the spinal tap but once the all the spinal tap things come back she goes okay we'll try IVIG since she sends in the order for IVIG and we asked for a referral to Mayo to see if they can get to the bottom of it IVIG orders come back denied saying we have to try steroids first steroids are much cheaper IVIG is like basically antibodies taken from like thousands of blood donors so it's super expensive sludge but it comes back negative we have to try steroids and at this point I'm just going to play a video of me in the bathtub so you can kind of get a picture of my mental state uh the inside of my brain feels like a popcorn kernel that is burst and there's like ants eating it that's what it feels like every morning I wake up and I'm slapping my head like God damn like God ah this feels so horrible so here's me in the bathtub to explain oh man oh my God damn man I am out of my goddamn mind which I suppose is normal yeah and simple eyes Exposition there's any hope but I am out of my goddamn mind nothing upstairs is functioning normally it is just the absolute chaos up there God damn so all the time all the stuff comes back negative on the spinal tap and that was also a devastating blow because I was hoping autoimmune Encephalitis it feels like my brain's inflamed it feels like my brain's inflamed things are going wacky nothing's operating correctly this has got to be Encephalitis and when all the antibodies came back negative and everything else came back negative in the spinal tap I cried a little bit and then and I got up and it's time to push on to the next thing and try to figure out what the hell's going on but that was also a really devastating blow because find an antibody you're in the hospital they're treating you you don't find one well you feel like you're and I really felt like I was next devastating blow as I'm suffering day after day after day and these days are long okay long long days of doing absolutely nothing I can't engage with the world I can't read I can't track movies I'm watching movies and my brain will glitch every time like a scene changes my brain will glitch out um I'll I'll perceive scenes as overlapping one scene will happen then the next scene will happen but my brain perceives as if they both happen at the same time so there's nothing I can do I can't read um so I'm basically doing absolutely nothing um and for a large chunk of it I thought I had porphyria and with porphyria you had to be you have to eat sugar to prevent the attacks and so we're cramming like cinnamon rolls and like sugar cubes down our throat while having these psychotic breaks and uh it's all for not because we didn't have porphyria so uh eventually we get the Mayo thing referral sent off it gets denied another devastating blow but you can appeal it we appeal it it gets denied another devastating blow we get a referral to Virginia Mason uh wait what am I missing anything oh yeah February February that was a fun month that was a fun month indeed uh one night Derek and I were uh we were browsing through his phone uh looking at old Snapchat videos and uh I'm on my phone and uh a really creepy Snapchat video popped up and I'm gonna play it if you uh don't wanna see something that's kind of creepy you can just skip ahead like a 30 seconds to a minute I'd say 30 seconds is fine but if you want to see a creepy video uh it's kind of just kind of creepy it's not horrifying but uh here it is okay I just want to make sure you're sleeping all right sweet dreams but when we watched that video it was not like we were watching some Snapchat video it was like literally I had stared into the eyes of the Antichrist and we were both sitting there like oh God Jesus like why don't we look at that oh oh no it's just a video it's fine it's fine like it had hit it had rocked me like my entire nervous system was just completely rocked by that it literally felt like I'd looked into the eyes of the devil and he was speaking to me that's what it felt like because my brain was psychotic okay it wasn't perceived in like a normal this is a snapshot filter way it was like not just a creepy way either it was like I literally stared into the eyes of the Antichrist and he was speaking to me that's the kind of mind State I was in anyway I think this is what precipitated it was it was just such an intense shock to the nervous system just that whole feeling that I think it precipitated what happened next um where the next day I slowly become more and more dissociated and I'm just crying intermittently throughout the day I'm becoming more and more dissociated and emotionally liable as I would determis and um to the point where I feel like I can't see like I'm so dissociated so disconnected from reality that even though I can see the stuff it's there I can see it I feel like I'm blind because I'm so disconnected from reality and at this point I'm packing my bags to go to a hospital that's a few hours away to go to the emergency room to get some inpatient care because I'm losing my goddamn mind and nothing's coming back positive so we drive all the way there we wait in the emergency room I'm intermittently sobbing something slowly happening to my brain I don't know what you call it the the psych ward sweet impatient portion where they where they take your information and it's not the emergency room like you're talking to a doctor you're like talking to a social worker and I gave my story of everything that happened she passed that story along to a psychiatrist that works there because I'm now in the psych section of things because I'm having psych symptoms um and at this point everything my perceptual the way the world looks around me is very bizarre but like I can't explain exactly what it looks like very bizarre it's like the contrast is turned up Mounds are like lagging behind speech um things are kind of like blurred and everything perceptually looks really really strange so I'm I'm having a psychotic break psychosis doesn't necessarily mean you're hallucinating although it can be it just means you're having a dis like a break from reality and that's exactly what I was having uh so she takes my my whole story I tell her the whole story from beginning to now how I'm telling it to you here maybe even a little better I feel like I'm kind of bombing here but it's just the best I can do to give you a picture my brain's not all the way better so it's just the best I can do she tells the psych guy psychi says he has bipolar um tells her she tells me that I have bipolar and I'm like I do not have bipolar I'm like about I'm shooting I start chewing out this social work I'm like I don't have bipolar okay I have hand trimmers I have clonus I have neurological deficits okay I have an elevated myelin basic protein at which point I didn't realize they're all just I think is totally worthless I do not have bipolar I'm enraged at this point because I've because it's a scary place to be you have to think about it like I'm having all these crazy psych symptoms I feel like my brain's on fire and there's a pot like it's exploded I'm having a psychotic break and I'm like I know there's something that's physically wrong with me that's causing these symptoms and now I'm starting to go down the slippery slope that I never wanted to go down which is the side slope where you end up in a psych ward and get medicated and then you get kind of lost in the system and people think it's a psych problem when there's something physical going on ultimately I agree to be admitted though because what am I going to do I'm having a psychotic break I don't want to go home I need meds at this point I've gone so far without any sort of medication besides Advil which would help it actually did help with my panic attacks and with just symptoms in general but I get admitted they put throw me in like brown scrubs slapped me in a wheelchair and uh haul me off down some hallways it's like 2 A.M at this point and they dropped me off at a room that's um uh it's two beds two individual beds a little bookshelf between them and that's it and there's this fan vent rattling up in the corner uh I get kind of scared because I'm having a psychotic break I'm totally alone I do not want to sleep in this freaky ass room so I call my dad um eventually we just kind of come to the conclusion that like what am I gonna do go home like we went through all this process of inpatient all that to get here they gave me some antipsychotic meds which calmed me down and um I spent two nights two days there two days at inpatient they gave me Ativan and antipsychotic called Zyprexa and Zyprexa makes you very tired very tired and very hungry so every time food came around I ate the out of that but I didn't leave my bed almost at all I spent the whole 48 hours just laying in my bed and staring at the back of my eyelids hating My Life um especially when I spoke with my dad and um he had spoken with some people at Mayo he knew a guy he went to med school my dad went to med school and he knew a guy in mayo and the guy in mayo talked to some doctors they reviewed my charts and stuff and they said they don't think I have autoimmune Encephalitis when my dad told me that I felt completely hopeless I was like there's nothing I I told him I said Dad I'm so scared like I was crying Dad I'm so scared like I nothing will humble you more than that experience so I felt utterly Hope was having a psychotic break laying on this bed staring at the back of my eyelids all day because I can't read there's a book in my room I can't read it's impossible for my brain to read they handed me a piece of paper to select what food I wanted for the day and I'm like I'm grunting looking at it like I'm like okay I I can't I can't do it I'm like trying to Circle it's like too much I like it's over stimulus just looking at words uh so I do nothing for 48 hours occasionally I'd get up and Pace the halls for some reason they had a 48 like 72 hour covet hold where you couldn't leave the psych ward for 72 hours until it was weird because I had a covered they did a covet test and came back negative but anyway so occasionally I'd walk the hallways and I'd ask for uh ask the nurses for antipsychotic meds because I'm telling them like I'm psychotic I need more medication uh eventually I realize this is going nowhere because I talked to the psychiatrist and he says I have bipolar because I had mentioned the word manic at one point which I mean what I meant was over stimulated my brain felt overstimulated but I said manic so he diagnosed me with bipolar so rip there goes my uh Aviation goals I was I was Learning to Fly before all this happened and that that'll ground it pretty good so I don't know if I'll get that scrubbed out or not but uh I he said I had bipolar disorder I was like okay I'm staring at him he looks freaky as hell the whole room's staticky everything has like these weird colored lines around them um perceptually the world looks very bizarre my brain feels like it's on fire and I'm like I have bipolar disorder like I'm talking to him coherently so my brain's all there I'm not like I'm not like uh mentally not there I'm bomb all I'm all there it's just I'm having this weird psychotic break and I ask him like what's what are the odds that if you think it's physical and he said it uh it's probably 20 chance that it's physical and in my mind it's 100 chance so it's like anyway I just missed that doctor I realized it's going nowhere at least nowhere I like and so I call my dad and I say I'm done I'm going home and my mom picks me up and every she just looks everything looks so freaky and weird and she picks me up and I hug her and I say Mom I don't want to be crazy anymore and um she drives me home and I I sit at the at the dinner table with my family and my oldest brother Michael's there now and everybody is a little scene looks bizarre like high contrast mouths are lagging words and things are like blurring massive psychosis without hallucinations but it was a psychosis break from reality nonetheless um but they prescribe me Ativan and I take Ativan and I calm down so that was a nightmare February so now I'm on meds I'm on an antipsychotic psychotic called Zyprexa which has made me really fat my lowest was 160 here's a photo of me at the beginning when I initially started having symptoms I became anorexic and dropped down to like 160 something and now I'm like 190 something because I practice it makes you hungry as hell so at this point I'm on Zyprexa and I'm on ativan eventually switch to klonopin a very addictive uh medications but at this point I needed them because I'm like I hate my life so much I hate my life so much I need something to like take some of the pain away I've been suffering long enough so at least in the evenings I was like felt okay for the meds that stacked up throughout the day and I felt like my brain was smoothed over and calmed down and I can handle it a little bit so this point my my uh you know my dad kind of thinks it's a psych issue like he's he's saying it's psychon Margaret I'm like I'm still ill there's something wrong with me you know it was kind of a little Battle of like is there actually anything physical going on because no no none of the doctors are finding anything and I'm having psych symptoms and meanwhile I'm like I'm course I'm having psych symptoms there's something wrong with my brain if you have something wrong with your heart you're going to have heart symptoms or whatever it's going to flutter we have something wrong with your brain you're going to have psych symptoms like it's obvious to me that I'm not having psych symptoms but they can't see it they can't see it and I don't want to say my parents were not supportive because they were very supportive unbelievably supportive throughout this whole thing I'm just saying there were moments where it was like is this a psych issue and that's what happens when you can't see from the inside like I'm doing my best to tell the story as best I can this is really hard because of the things that I perceive on all the weird perceptual stuff it's Indescribable the states of EX being an experiences I've felt throughout these seven months are Indescribable I can do my best but they're Indescribable you don't know until you've felt them yourself and so when you don't know what it's exactly like you might think well it's possible that it could be a psych problem anyway I'm terrified of being labeled psych but we keep pursuing neurology my brother goes to Virginia Mason sees Wonder all just she doesn't know what the hell's going on but my brother's spinal fluid had elevated protein mine didn't his did elevated protein means brain damage so that at least gets neurologist a little bit interested mine just had elevated myelin basic protein they really don't care about that come to learn so he sees one neurologist there and it takes a long time to see a neurologist like we're waiting weeks to get in a month or whatever to get in and see a neurologist it takes a long ass time it's not easy he sees a neurologist uh doesn't know refers him on to a different neurologist we have to wait some weeks um he goes to see this other neurologist and my brother is he's stubborn he's not uh he's not a pushover he's very stubborn and he pushes hard for steroids and he gets it meanwhile I'm pursuing a different neurologist at um university University Hospitals of Cleveland I'm not going to dox him uh eventually I get seen by him on telemed and he says stop pursuing this autoimmune thing I recommend that you pursue psych and I'm like great um another big blow because in my mind I'm having something physical happen to me it feels physical I'm not just having a psychotic break for no reason and why would both me and my twin brother have at the exact same time like something weird is going on here but it's not just a psychotic break that's coincidence coincidentally happening at the same time and people are looking like doctors look for what are the what are the two people doing that are the same uh to find some link that could cause this but guess what we do everything the same we get up literally at the we do everything the same we eat all the same food we walk the dog together at the same time we go to the same restaurants we take the same medication we shower at the same time we I mean well not literally we're not in the same shower at the same time but like we get ready for beds and like everything's the same our clock is exactly in tune together because we've lived together and we've been joined at the hip since birth also not literally but then finally finally finally in April uh after my brother pushes the neurologist for steroids and he says well it's kind of 50 15 with steroids of the stairs I'll do anything it's anti-agitis but I don't really see anything here that could help but you know it's not the worst idea and Eric's like okay it's not the worst idea let's do it and so he pushes him and gets steroids and uh they work steroids work they help they improve things by like 50 um and that's in April finally in April so this start in September this hell that I really I've only scraped the surface of by telling you the story started in September and finally met the beginning of its end in April when Eric got steroids and he had some improvement I contacted my local neurologist saying I want it as well because she's the one who ultimately sent off the orders and she sent it off as long as oh yeah way back when when we had IVIG and steroids and the IVIG got denied and we wanted uh we had to have steroids she wouldn't give it that's why we had to pursue other neurologists is because our local neurologist wouldn't give it because it can cause other psychotic symptoms and she didn't want to do that and I'm like please I won't take anything even more psychotic symptoms if there's a chance that it could help me so she withheld treatment from like I don't know what it was like late December all the way to uh April that's four months of Hell of psychotic excruciating hell that she withheld for that long because she was scared of psychotic problems more worsening psychosis my please I don't care if I'm seeing my dead grandpa in the corner I want to try it to see if it'll help and I'm on Zyprexa I'm on I'm on an antipsychotic 10 milligrams that knocks you out it would knock out any sort of psychosis so she prolongs it for four months until she gets Daddy's approval from Virginia Mason to do steroids on Eric and it works imagine that that this entire time we're arguing for something that's inflammatory and steroids work unfortunately steroids are non-specific which means you can't say that it was inflammation in my opinion I call the way it felt and the way the symptoms presented and the way the steroids worked I think there's a pretty good chance that it was inflammatory mediated which would mean it was encephalitis autoimmune or otherwise so uh imagine that the entire time you're trying to tell everybody I was in the psych ward going up and like telling everybody who spoke with me that I have possibly Encephalitis I think it's Encephalitis I do not have a psych problem I think it's Encephalitis this entire time I telling everybody's inflammatory mediated and people are like I don't know you know everyone's kind of starting to push against you because you're not getting any of the things to pop pot and finally the steroids work and you're like ha it uh it was inflammatory mediated and they're like it's not specific so um the best we can do is uh post viral non-recurrent encephalopathy which is basically just a worthless diagnosis in my opinion my mom would argue otherwise she would say it's something to cling on to but in my opinion it's worthless I think it's Encephalitis and I think the steroids were um proof of that mild moderate case weird case I don't care I was Encephalitis nonetheless and so shortly after that um in April I get my treatment of steroids and I have a very good time because steroids make you feel well can make you feel very good and they make me feel very very good and faces finally faces start looking normal I after the steroids I come home and my parents faces start looking normal and like they used to look like this there's like a mat wherever my center of vision was there's like a magnifying glass like a bubbled their face out that's what it looks like and I look out in the landscape and like bubble where I'm looking but I couldn't really see anywhere else it was like it was perceptual it wasn't like I had blind spots but I couldn't really see everywhere else I couldn't see the full landscape would just be like right where I'm looking there's like a little bubble almost like a magnifying glass and finally after the steroids I can start to see their faces again and they don't look like the Antichrist anymore but you can imagine the damage it does to one's psyche psychologically to see their family members faces as like the devil like they all look like Little Devils for like four or five months not good it's also not healthy for the brain to be in a state of psychosis constantly for that long so even though I got the steroids in April and they provided massive relief because now I'm doing a video where otherwise I was just curled up on the ball listening to Lo-Fi beats just trying to get through the day now I can actually do a video but I still have problems because you know it was so long it was seven months of hell and uh and I still have perceptual problems where the world looks really still looks really strange seems to be slowly improving I have a lot of like panicky feelings sometimes I feel really like crazy and it kind of scares me um my I have intense brain fog this residual stuff that I'm working through but the good news is the hell phase of it is finally over but life is hard oh I feel right now is really really hard to be honest it is very difficult every day is very difficult I still feel very mentally unstable and I just don't feel like myself at all as you can imagine and there's also just fear of like how much recovery am I gonna get when will the world look normal because it still looks really weird just perceptually very bizarre I still have some visual snow visual static you know there's just a lot of fear and a lot of um just not feeling like myself at all after being and basically psychosis for at least five months out of that whole experience so it's something to be working through and it's something that you're going to see come out in videos it's just gonna videos gonna be a little different I think maybe have a little bit of flavor I don't think it'll be worse but they're just gonna be a little bit I don't give a because I don't give a right now I'm focusing on getting better as best as I can and the way I told the stories the best I can do in my first try because I'm not going to retell a story again I hate telling it I've told it to so many doctors and it's hard to break out of the the mold of trying to tell it I'm telling it in a in a pleading way a way to like hear me like please hear me out it's hard to break out of that mole and just tell it honestly of how I experienced it um well that's the best I can do that's the best I can do is how I told the story right there and uh maybe slap some photos in there to make it uh to pull tie the whole thing together um but it's been an absolute nightmare I'm thankful of where I am because where I was was uh if I were alone I wouldn't have made it let's put it that way if I didn't have family to support me but I had my twin brother to going through it with me I wouldn't have made it if you catch my drift so um I'm thankful for where I am and I'm thankful for what I hope to be here in the next coming months and maybe a year and that I'm happy that I'm talking to you guys again and I appreciate you hearing me out and listening to my story um I almost wanna cry because it was so bad and um I I appreciate you bearing witness to the suffering that both me and my brother have gone through a lot of Life Lessons Learned after a certain point though um you learned a lot of life lessons through pointless suffering you learn patience you learn uh what's what's valuable in your life and what's not valuable it trims the fat you learn to not ever take anything for granted ever again um but after a certain point of pointless suffering it just becomes too you've capped out and uh you can't learn any more lessons and it's just pain and there were so many months of pain um but in the future is bright in my opinion um I think it's gonna be a long and kind of painful recovery but I think my future is brightness it's going to be a long time before I feel 100 like normal again Everything feels weird life is a little bit upside down but hey everybody's dodging bullets every day and they don't know it until they hit one and when you hit one it can hurt and this one stung a lot but uh we're staying positive and we'll get there that was a glimpse into my life over the last seven months doesn't cover every aspect of it at all not even close but it's the best I can do in one take and uh that's it I guess and I just want to say love uh love the hell out of you guys you guys uh you guys rock and I've gotten a lot of support on Twitter and YouTube from you guys uh which has kept me going through it's just nice it's nice having people support you and say hang in there good luck it'll be it'll be okay and it'll be a memory one day so thank you that's it peace out catch you later [Music] um mm-hmm [Music]

Channel: InTheMoney

Views: 143,549

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Id: iLuxURgAieM

Length: 52min 26sec (3146 seconds)

Published: Wed May 04 2022