u/buttcheek24

TW: mentions of suicidal ideation; detailed descriptions of akathisia

hi all, not sure what i’m looking to gain from posting this aside from just documenting my experience for myself and others to look back on. for background, i am relatively medically complex (ehlers-danlos and some other things) and i have some serious psych diagnoses (long-standing DPDR and CPTSD, recently suspected DID/OSDD1) so my thresholds for pain and misery are quite high. i have been to the emergency room three times in the past week for severe head pressure & possible cerebrospinal fluid leak, which has been hell in itself.

yesterday morning around 3:00 AM i was back at the ER with pressure and pain in my eyes, and fluid draining from my nose. they gave me a cocktail of IV meds to help my symptoms which included benadryl, toradol, and droperidol. almost immediately i was in pure hell.

i’ve had nearly every psychiatric symptom under the sun throughout my life - severe dissociation, amnesia, psychosis, and complete psychogenic blindness, to name a few. well absolutely NOTHING prepared me for akathisia. i had never heard of it, had no idea it was a thing or what the risks of these meds were. but within a few minutes of injection i felt the heaviest sense of dread and terror that i’ve ever felt. i honestly thought i was dying. like my skeleton was vibrating, my skin was burning but without any pain, and there was such a massive sense of “you need to get out of here” but my body was paralyzed. it wasn’t anxiety, or fear, or psychosis - it was like a portal to hell opened inside me and i felt all of it and nothing at the same time. it was pure torture. time didn’t exist and i was in an infinite loop with no escape in sight. i genuinely felt that the only way out would be to end my life and hope it wasn’t eternal. time was moving fast and also slow, i had no idea what was happening around me because all i could focus on was the world ending and the electricity in my veins.

i think the worst part was everyone around me acting normal and fine. i think a dissociative alter of sorts just fully took over, because my body was ALSO acting like everything was normal and fine. no one that i interacted with, including my wife, had any idea that something was wrong. it felt like an intense secret i couldn’t possibly share, or they’d be afflicted too. i felt that i couldn’t keep my eyes open but apparently they were open. it was absolutely horrible and i was trapped inside my mind alone with this feeling. my body just appeared restless, adjusting to get comfortable and shaking my legs as though i was a bit anxious. but i felt the need to be steamrolled to get rid of this sensation. i needed to scream but nothing would come out. my soul was in pain, but my body felt fine.

anyways, eventually i was discharged home and i have no memory of that journey. i remember taking an ativan in the car, then getting home and going to sleep on the couch. i woke up a few hours later feeling groggy and still jittery/agitated but not nearly the hell that i was in at the ER. that feeling has been lingering but slooooowly tapering out over the last 24 hours. drinking cold water helps, cranking the air conditioner, and laying under a weighted blanket. i ended up googling the meds last night which is how i discovered akathisia and this sub. i decided to talk to my wife about this and actually realized that this symptom is very familiar to them. they have bipolar disorder, and often have episodes of total shutdown where they curl into a ball and just tell me “i need to do everything and nothing and also crawl out of my skin” which i really never recognized the intensity of until now. i cannot imagine feeling this regularly.

so this will be my last time taking droperidol, and probably toradol since that one can apparently contribute to this as well. i’m terrified to take any new meds now. the fact that the bendaryl didn’t touch this feeling is scary to me. ativan was the only thing that finally knocked me out long enough to recover from it. i think i have new layers of trauma from this tbh. what an absolute nightmare. i hope you are all doing alright and finding ways to cope with akathisia.

hi folks, i continue to have confusing and overwhelming health issues - see this post for background if you’d like. most recently, i have developed what seems to be a spontaneous cranial CSF leak, increased neuro symptoms, fatty and/or fibrotic liver, and idk what else honestly.

point is - i have been approved for whole exome sequencing through GeneDx which i’ll be doing soon. i am curious if anyone here has done the invitae panel for CTDs and then did GeneDx or other WES, and did it reveal anything new? i’m just a bit concerned because it’s not the most reliable test for TNXB specifically, and my symptoms are sooooo in line with clEDS. so ideally i’d be going through prevention genetics but 🤷

does anyone here happen to know if there’s any chance they’d find TNXB mutations, if i have them? or any other EDS related mutations that invitae doesn’t cover?

TW: discussions of childhood trauma, unstable parents, dissociation, and forced speaking

Hope y’all don’t mind me using Reddit as a journal or something 😅 I was diagnosed with SM at age 4 and was “cured” by age 6. It first manifested when I was 3, shortly after moving states and before starting preschool. I started “refusing” to speak at relatives’ houses even though I previously didn’t have a problem. Then I went to preschool for 2 years and did not say a word the entire time. Eventually I was prescribed Zoloft before starting kindergarten, my mom convinced me it was a magic pill that would make me safe to talk again, and I believed her enough that I seemed “cured” just in time for school to start. In retrospect, this is when I started experiencing depersonalization/dissociative episodes.

I am now 28 and diagnosed with CPTSD, along with DP/DR disorder but I’m probably getting that one reclassified to OSDD-1 or DID soon. As an adult, when I am severely triggered and/or coming down from flashbacks, I frequently become non-verbal for a period of time. It’s the same feeling I would get as a kid where I have thoughts and I want to say them but my body just won’t make the sounds. As I’ve continued to learn more about myself and my mind, I am pretty sure I created some sort of non-mute personality state when I was 5 or 6, and that’s where I started to lose my sense of self. Social situations have always been huge dissociative triggers for me and I remember frequently trying to tell my mom when I was a child “I don’t feel real right now” after being forced to talk to people.

So obviously the “cure” for my SM was incredibly traumatic for me, but I was also experiencing a lot of other trauma at the time, including constant verbal and physical altercations between my parents since I was born. I feel like I was set up to fail and I constantly wonder is SM was actually an early sign of severe trauma in my case. It confuses me, reading all of the information online saying that “selective mutism is not the result of trauma” because it feels completely intertwined with trauma for me.

This long-winded post is just to ask the question - do other people grow up and realize their SM is/was a trauma response? Did anyone else receive a “cure” that really just suppressed this trauma response and forced the brain into a different one? Do you have a complex trauma disorder as an adult? I’d love to know whether I’m alone in this 💖

CW: detailed descriptions of dissociative episodes

TLDR: I’m new to this. The autobiographical amnesia is severe but day-to-day amnesia is mild. I don’t typically “switch” externally, but there are distinct parts of my mind I’m aware of, I hear them speak internally and they sometimes show me memories that I’ve never had before. I don’t know if I’m OSDD-1a or 1b or DID or what. I would love to hear about your experiences, and what were the indicators that made 1a or 1b feel more accurate?

~

Disclaimer that I am working through the diagnostic process with my therapist who is a LMHC specializing in early complex trauma. They have the ability to diagnose, but their main specialty is psychosis & CPTSD/BPD, so they aren’t an expert in OSDD/DID. We’re kind of learning it together.

I’m 28 years old, have severe complex trauma that started in early childhood, and I have been diagnosed with a lot of stuff in the past. All have been official diagnoses made by psychiatrists/neuropsych/LMHCs. Ultimately as an adult I have just summarized all of it under CPTSD.
2002 (age 4): selective mutism, GAD
2010 (age 12): PTSD, OCD
2014 (age 16): DP/DR
2018 (age 20): CPTSD

In the last year and a half or so, I have finally reached a point where I can start unpacking some trauma in therapy. I have pretty significant autobiographical amnesia, including full blackouts for some early severe trauma. I did not realize how deep it went until I started having the experience of fully dissociating into the background during parts of my therapy sessions, witnessing my body describing some of the blacked out events in full detail. Describing stuff I have no recollection of and it makes me feel like a liar, so much that I make sure to tell my therapist “I don’t know if any of this really actually happened” afterwards. It feels almost like a stranger is in my body talking about it, but I’m also able to see the mental images, and I remember all of it afterwards. There’s kind of an element of constant swapping back and forth between first-person and third-person POV where each switch to third-person takes a bit for me to catch up. But my body continues talking uninterrupted even when I’m in third-person and struggling to keep up. In third person, I want to interject and stop the conversation but I can’t, or maybe I just know not to. Does that make sense?? I also know that the feeling of lying is completely absent when I’m in first-person POV describing the event, but it’s soooo strong afterwards.

I have realized that the same feeling happens during trauma flashbacks, but I haven’t picked up on it as much there, because it’s easier to ignore. During flashbacks I just kind of shut everything out. Coming down from it is gradual and I’m completely nonverbal while my mind is adjusting back to reality. It’s the same feeling I had as a child with selective mutism. Sometimes I suddenly realize I’m crying, sometimes I’m just staring at nothing. Once I fully snap out of it, I don’t remember much about the content of the flashback itself. I remember what my body was doing but I struggle to perceive how much time has passed.

So myself and my therapist have caught onto this likely being OSDD/DID of some sort. I took the MID-60 and got 55/100 (profile was OSDD-1) and then on the DES-II got 49.3/100. The low areas for both were amnesia (for recent events) and FND. Everything else was moderate to high clinical range.

I will say that my “perspective shifts” feel subtle for the most part, and I don’t change names or voices etc. I hear a lot of chatter in my head with constant intrusive thoughts that contradict each other. There have been a few names thrown around in my mind, but never presented externally. I also have not done enough work to be able to know much about any alters - I just know that I never have the experience of finding myself in a location I don’t remember going to, or finding significant changes to my appearance/environment that I don’t remember, or finding out that I’ve asked people to call me a different name, etc. None of that. The most I get is like, losing my train of thought mid-sentence, finding my phone in a different place than where I remember leaving it, forgetting minor conversations I’ve had, etc. Most of that seems pretty on-brand for DP/DR rather than having amnesiac barriers, right?

So I guess my question is, does anyone relate to this? Have you figured out which OSDD-1 fits you best? Or were you ultimately diagnosed with DID? I know it’s not technically important to distinguish, but I still want to try and understand myself more. It feels like OSDD-1a and 1b are pretty clearly defined in terms of their differences, but somehow I can’t figure out where I fit. Both options feel accurate and also not.

forgive me for the long post, i’ve been having a horrible time and hoping someone here might have any insight. for background, i’m 28 nonbinary AFAB, diagnosed with hEDS (might be cEDS), MCAS, PMOS (aka PCOS), ADHD, C-PTSD.

i have a lot of neurological issues that none of my providers have been able to figure out. starting around age 17 i began having issues with numb/tingly hands that got worse over time, spread to my arms, became more frequent, and eventually started waking me up most nights. then it started to include stiffness, fine motor issues, and cramping. it seems to happen more often in “flares” where it’s near constant sometimes then less frequent/severe at other times. eventually at age 26 it became unbearable during these episodes, so i saw a neurologist.

at this time i was also struggling with IBS-D, frequent urination, general balance & coordination issues, air hunger, heat intolerance & excess sweating, weakness and heaviness when elevating my arms, along with chronic pain and fatigue. during the neuro exam in 2024 the neurologist also found that my reflexes are abnormally strong - he documented hyperreflexia level 3 in my elbows, 3 in one knee and 4+ in the other, and 4 in one ankle 4+ in the other (same side as the clonic knee). my gait was normal and Babinski reflex was negative. he suspected MS so he ordered a brain and neck MRI without contrast, and an EMG + NCS. the MRI showed “several scattered T2 hyperintense foci in the subcortical deep white matter” which he explained as small benign lesions, not suggestive of MS. the EMG + NCS were normal aside from mild bilateral CTS which has since been confirmed as not being the cause of my symptoms.

eventually in late 2025 i started seeing a podiatrist and he was alarmed by my reflexes. at this point he documented 4+ reflexes in both knees and both ankles, as all of them demonstrated some amount of clonus. he also noted that my gait was slightly “off” but nothing specific or significant. i also saw a physical therapist around this time who tested my balance and said it was “similar to a 75-year-old” at age 27.

earlier this year, i broke my ankle and needed surgery. they did an ultrasound-guided nerve block in two major nerves but it failed. the surgeon actually realized while i was under full sedation because my leg responded to stimulus, so they had to intubate me and put me fully under. i woke up in severe pain that wasn’t responding to the “good stuff” even a little bit.

after this, i started having a lot of neurological changes. i’ve developed severe and frequent dysautonomia episodes, landing in the ER multiple times with blood pressure up to 165/105 & heart rate of nearly 200 BPM. i had a 2 week heart monitor which just showed frequent sinus tachycardia. it doesn’t behave like POTS because it is not orthostatic, like i will literally be laying down with my feet up and my heart rate will be 150 BPM. the cardiologist is concerned about autonomic dysreflexia despite no known spinal cord injury.

i have developed new symptoms during this time: Lhermitte’s sign; frequent widespread fasciculations (in my feet, neck, ear, chest, buttcheeks, literally everywhere); frequent unilateral color changes in my hands and feet; heaviness in my legs and arms; constant tremors in my hands and sometimes in other parts; and my fingers are constantly FREEZING cold. i also keep having these moments where i suddenly get very sleepy, cannot keep my eyes open & when i force them open it literally feels like my eyeballs are shaking/vibrating. after a few minutes this resolves and i’m wide awake again (but sometimes i give in and take a nap).

so reddit, my question is: wtf? what on earth is causing all of this nonsense? i don’t want to go back to the original neurologist because his response was basically “you don’t have MS so you’re fine” but i also don’t want to keep getting worse. i had a brain and neck CTA in March which showed nothing alarming. i have a referral for autonomic function testing with tilt table, but it’s not scheduled yet and it will be eons before they have an opening. what should i do now? do i request a new brain MRI since it’s been 2 years and i’ve gotten worse? is there a chance they misinterpreted those “benign” lesions on my original MRI?

tldr: it turns out we can develop metabolic dysfunction-associated steatotic liver disease (MASLD) and I’m mad about it. anyone had success in treating this before?

too long version:

so obviously PMOS was renamed as such because it is a metabolic disease. that fact is really proving to be an issue for me, and I’m simply tired of it. for background, I am 28 years old and have had symptoms since age 11, first had a doctor suspect PCOS at 18, and officially diagnosed at 22 via ultrasound. I could’ve been diagnosed much sooner but my doc at the time wouldn’t accept clinical hyperandrogenism, and my biochemical levels were normal, so she only confirmed it when I met the polycystic ovaries criteria.

anyways, I have been vegan since age 16 which has helped overall with symptoms. I had a bout of prediabetes in 2024 (6.0 a1c) and was put on Metformin 500mg daily along with 2050mg myo:d-chiro inositol. after 6 months I was at 5.8 a1c, and after another 7-8 months I was down to 5.4 a1c. I still take the meds. I limited my sugar intake heavily, but relatively recently have started being more flexible (nothing crazy tho I swear)

a couple months ago I had a chest CT scan at the ER and they incidentally found my spleen was a bit enlarged, so I was referred for an abdominal ultrasound. lo and behold, another incidental finding, my liver is echogenic. I guess there are a few things that can cause it but the most common by far is fatty liver disease. weird, because my liver enzymes have always stayed normal (as recent as april 2026) and same with my cholesterol. as for alcohol, I was previously only a “two or three drinks every couple of weeks/months” type, until quitting altogether last summer due to MCAS causing sudden allergic reactions to alcohol.

I haven’t heard from my doctor yet but I suspect more testing in my future. I am very medically complex to begin with, I have EDS (current dx is hEDS but geneticist is pushing for reclassification to either cEDS or clEDS). I also have MCAS as stated before, plus IBS-D and some dysautonomia going on. PMOS has been the least of my concerns lately. obviously the last thing I really need at the moment is further complications from the ONE disease that hasn’t been too out of control lately 🥲

anyways, I’m curious if anyone else has dealt with metabolic dysfunction-associated steatotic liver disease (MASLD) or fatty liver disease in general. did your doctor connect it back to PMOS? what was treatment like for you? is this a sign that it’s time to consider a GLP-1? (obv I will ask my doctor that)

tldr: Are the rollator brands like Rollz and byACRE really worth the price? Are they that much better than the Drive, Nova, Elenker, Vive, etc? Or does anyone have a specific recommendation?

long version:

I have been dealing with a horrible, months-long “everything” flare, and now trying to figure out what’s best for me and my body. I am finally starting to feel better but these flares typically leave me more permanently disabled than before. On that note, I’ve realized that I may never be able to tolerate as much walking as I used to.

Previously I was using a cane and then switched to SmartCrutches which I still love for shorter distances (going to appointments etc). I don’t think I’m at the point where insurance would cover a wheelchair, so I’m looking into rollators. I’ve been doing research to try and find the right combination of features, appearance, comfort, and price. Here’s what is most important to me:
- Features: needs a seat with a backrest, and ideally a basket/bag of sorts (I could always just add my own). Preferably weighing under 20lb. Wheels that can handle city streets and parks but I don’t need anything too rugged. I also like the ones that turn into a wheelchair but it’s not a requirement.
- Appearance: Ideally pink or green, but will settle for black, white, grey, etc. I just don’t want the royal blue or bright red that medical equipment tends to be. I also don’t like the look of the cables all over the place and would prefer to have them concealed in some way.
- Comfort: I am worried about leaning forward too much while using it. I’m only 5’3” though. I am also worried about my hands/arms which tend to get very numb and tingly at certain angles (using a cane became mostly impossible). As for the seat, I think a cushion would be best in case I need to rest for extended periods.

Anyways, I know most/all of my needs would be met by a Rollz or byACRE rollator which both seem popular here. I just don’t know if I can handle the $600+ price tag right now. I could make it work, but if I can get something for under $200 that works just as well, I would like to stick to that.

So my question is, are the brands like Rollz and byACRE really worth the price? Are they that much better than the Drive, Nova, Elenker, Vive, etc? Or does anyone have a specific recommendation?

but not in the way that you’re thinking. let me give you some background on the characters…
my grandmother was a widow with 3 kids when she married my grandfather. they later had kid #4 which is my dad. grandpa raised my dad’s half-siblings as his own, so the “half” part was never really said out loud.

among these siblings was my aunt, who passed away shortly after a metastatic lung cancer diagnosis in 2015. she was in her 60s. she and her husband were chainsmokers inside of their house for decades.

this story is about her husband, aka my uncle. a few years after my aunt died, my uncle falls in the shower and slips a disc in his back. it’s bad enough that he goes for a surgery consult where they take an MRI. plans quickly change though, because the MRI shows a nodule on his lung. he had no symptoms or any reason to suspect it, but this was stage 2B lung cancer. now we’re kind of glad he slipped in the shower, right? so the spine surgery gets postponed and he spends the better part of a year in cancer treatment.

after some time, he goes into remission. very exciting! this also means he can finally get his spine surgery, and that goes forward without any complications. he recovers well from surgery and reaches 1 year cancer-free. he’s 70 now and getting life back on track for the first time since his wife died.

he has an appointment across town for his 1-year PET scan, just to confirm there’s no relapsing cancer. he gets the all clear! he gets to driving back home with this good news. at a stoplight, someone rear-ends him which sets off the airbags and wrecks his car. he’s taken by ambulance to the hospital where they determine he’s fine, just a broken leg from the airbag. he gets fixed up and sent home to rest.

would you believe that the person who rear-ended him is my grandfather? it wasn’t intentional, and it was pure coincidence that they were at the same place at the same time. my grandfather is nearly 90 at this point and probably shouldn’t be driving anyway. we find out about this later in the day and just kind of think, what are the odds?

my uncle insists he is fine to stay at home alone that night, he has crutches and his leg is in a cast. his back hurts but it’s nothing he can’t handle. this changes though, when he calls my aunt (his SIL) in the middle of the night. he woke up and needed to use the bathroom, but realized he couldn’t move his legs.

an ambulance comes and takes him to the ER, where he’s starting to lose motor function in his arms now too. they get him in an MRI and find that the car accident dislodged the disc he had repaired just a few months prior. it was obstructing his spinal cord more and more as the inflammation increased.

we were devastated the next morning, when we learned that he didn’t make it through emergency surgery. too much damage was already done, and surgeons couldn’t operate fast enough to save him. the shower injury that save him from cancer was now the same injury that killed him. and the craziest part? it was my 90-year-old grandfather who dealt the final blow.

grandpa was never the same after that. he lived to 93 before pneumonia took him from us earlier this year. my mom never forgave him- my uncle was one of her best friends. he never forgave himself. i know my aunt and uncle would have forgiven him despite everything.

this story has been on my mind ever since grandpa’s funeral this past march. i will never quite understand how things played out this way. i’m not the type of person who believes in supernatural forces, an afterlife, or a magical man in the sky. but i do believe there was something at play here, something i can’t explain.

I have developed what seems to be hyperPOTS (pending cardiac results) and my PT thinks compression would really help. The problem is, I’ve tried several brands of compression socks but they always leave pressure marks which causes a dermatographia-type reaction. Even regular socks do it sometimes. I can’t seem to find much information about this, but there must be someone with similar issues who has found a good brand, right?

I am severely allergic to latex, and I have found that neoprene causes dermatitis. Otherwise I’m not sure what materials would be an issue (if any). I just can’t handle anything that’s capable of leaving texture marks on my skin. Anyone have some suggestions for socks in particular? Also open to waist compression etc!

so i have a clinical diagnosis of MCAS from an allergist-immunologist who specializes in mast cell disease. i trust him, but i still would feel more comfortable if my labs were documented as positive.

i recently had my baseline serum tryptase test and the result was normal. the next step is to have it repeated when i’m flaring, to see if it increases. the problem i didn’t really consider before is that my flares typically start at night. the labs near me are generally closed by around 6:00. since this test is supposed to be within 3-4 hours after the onset of the flare, how is this going to work? are people just generally flaring during the day or do we just have to go to the ER for bloodwork?