✨

discharged from epilepsy unit with no diagnosis, treatment options, or next steps. cool!!!!

on day three of my epilepsy monitoring unit stay. no seizures yet, sigh. the food situation is abysmal and is like, a triple whammy of my worst nightmares (nearly nonexistent vegan options, what does exist is sensory hell, and my ed is screaming at me the whole time bc none of it feels safe, plus i’m not allowed to leave my hospital bed so my brain is screaming about the lack of movement). I’m scared that I’m gonna leave this admission with no answers and an ed relapse.

dietitian did a preliminary screening for mcas a few weeks ago and was like “uhhhh so you passed that with flying colors….” so i have an eval w an allergist/immunologist in a few weeks. i actually feel?? hopeful?? bc we’re realizing that a lot of my seemingly disparate and unexplained symptoms could be mcas, and mcas is treatable! my dietitian had me increase my antihistamines (that I’ve already been taking daily for the past two years) and that’s already had a big impact. like, fewer headaches, fewer seizures, less nausea, less joint pain, WAY less itchiness, etc. there are even things that we thought were ed symptoms (high anxiety after eating, purge urges, etc) that could potentially be explained by mcas. idk, i really hope that this is *the* explanation, that i finally get treatment that works instead of escalating symptoms, that i can reduce doctors appts. would literally be a dream come true. 😭

got a massage today and the person was like “there is…..so much happening in your body” so that was validating and a little sad lol

neuro recommended an inpatient stay for 5-7 days to monitor my seizures 🫠 nottttt looking forward to being confined to a hospital room while they do everything they can to trigger seizures, but i scheduled it for after the school year ends, so at least i won’t have any other responsibilities and maybe it will give us answers? sigh.

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