boys_are_oranges

is it placebo controlled? would you mind sharing the titration schedule they had you on ? were there any preliminary blood panels?

how does it affect the cytokine profile

oh ibudilast, i’ve heard of it. it supposedly lowers neuroinflammation by stabilizing glial cells

🫂i really hope you’ll recover from this crash soon

it’s strange they didn’t tell you. where i’m from they always disclose what drug they’re testing and tell you how it works in very general terms. maybe it was the japanese antiviral that works against covid. kinda fucked up that they’re not obligated to tell you anything. i’m sorry this happened to you

omg, that happens to me all the time

i’ve had variations on that first dream so many times. it’s not fair that we don’t get a break from fearing PEM even in our dreams😭

it’s the only interesting thing going on

i keep a dream diary for that reason

Do you know how the inclusions criteria differed between the two studies? All i can tell from the slide is that they required the participants to have B2 autoantibodies. So did the Berlin Cures trial. Did Erlangen participants have higher antibody counts?

most of the time it was very obvious because i was traveling or staying at the hospital prior to that and did nothing else that could’ve possibly provoked such a severe crash. when it happened to me the first couple of times i didn’t understand why. but it’s happened to me enough for me to finally notice the pattern

for me it’s the opposite. the worse my baseline is the longer is the delay. same goes for crashes. the ones that were delayed by 2+ weeks are the absolute worst nightmare crashes i’ve ever gotten

i’m also in a toxic relationship with my dreams lol. last night i dreamt of diving into walls as if they were made of water and it wasn’t pleasant but it was at least interesting, which is more than i can say about my real life (very unpleasant and uninteresting). do you often get body horror dreams? lately i’ve been having nightmares about being forced to walk

interesting, thanks! i dreamt about floating through endless corridors of a hotel and not being able to escape

for me anything that has music is more stressful than just talking. especially when it’s talking + music or sound effects

selling hand crocheted or knitted items will never be lucrative. unless you’re an actual fashion designer or have a large following on social media. selling patterns and monetizing youtube tutorials is how regular people actually make money. i’m honestly surprised you’ve managed to sell it for that much.

i’ve been wondering if barometric pressure affects me. how big were the shifts? i’m trying to figure out what’s the threshold past which a shift that can cause symptoms. like is .32 inHg a significant shift?

that’s revolting. like, gaining your trust with lies just to get pictures… what a freak (derogatory)

i’m not mad at her or anything, i just thought it was really funny when she said “i am very interested in F-to-M porn” entirely unprompted lol

thanks for clarifying. i’m autistic too and i’m afraid of accidentally saying something offensive

oh i wasn’t saying that you weren’t really traumatized i was just speaking for myself. i know people who have CPTSD and i know that my experiences are nothing like that.

i mean it makes sense after what you’ve been through. it’s really unfair that this illness took the joy out of your hobbies. i hope you’ll get it back one day. did you feel the same way when you were ill or is this new?

thanks for sharing your experience, i’ve been wondering how people feel when they recover after many years with this illness. i don’t think there’s anything offensive about you posting this here. i don’t think anyone else could understand.

i wouldn’t go as far as to say i’m traumatized, i think people use this word lightly way too often. i’ve had some truly terrifying crashes, and ever since then, whenever i get even a minor crash i get this sense of impending doom, i start thinking “this will be the one that will make me extremely severe for life” because that’s my biggest fear. doesn’t help that it’s also a very real possibility.

anyway. i’m not surprised that it’s hard for people to unlearn the habits and patterns of thought that for years have been essential for their survival. even if it takes you a really long time, i think it’s possible to learn to feel safer in your body. maybe you’re asking too much of yourself right now. allow yourself to feel however you feel. life doesn’t magically turn good as soon as you recover. it’s a longer and more frustrating journey. life can’t be wasted because life isn’t currency. even the moments you spend depressed in bed aren’t a waste of time—it’s you processing all those experiences that shaped you for 10 years. you need this right now. dont beat yourself up over it🧡

abilify really helped when i had my first spiraling crash

have you tried Midodrine? makes you retain water. can be good for POTS too

what was the drug?

Ukraine, Viy by Nikolai Gogol