u/mistycheddar

I just wanted to share my experience so it's on the sub, I know I would've benefited from hearing this, I think it is quite rare but it did happen to me so who knows if it could happen to others.

I was perscribed prucalopride for my gastroparesis. initially I took 1mg but it gave me horrific headaches and constant pooping that did not cease in a bearable period of time, so I reduced my dose. this is common, and others on this sub talk about it a lot. and it did help to go to 0.5mg!

I was doing okay for a few days, increased appetite, a good amount of pooping, headaches back to normal. but then I noticed my dreams started getting unpleasant. and looking back I wish I had recognised this sooner. they weren't nightmares per se, but they felt long and drawn out and uncanny and vivid but in a bad way. I woke up uneasy and uncomfortable. then, I lost my special interests and hyperfixations. I genuinely desired a 9-5 office job (I'm a musician). my constant stream of thoughts reduced to 1 single thought at a time and I couldn't focus at all. at this point I did contact my doctor but couldn't get through, and my GP wouldn't speak to me about it.

I kept taking it - WHICH I SHOULDN'T HAVE! I then started getting hallucinations of bugs. it was terrifying so I stopped taking it immediately. unfortunately for me, the hallucinations seem to be wired into my brain now and come back every time I'm stressed. the other side effects have ceased. I never did get to talk about it with my doctor.

this is not me saying nobody should take the med. but considering these side effects aren't even on the leaflet... I think people should be aware, and if these symptoms happen they should talk to their doctor if possible or evaluate if they should keep taking it if not.

ok serious post now. I've been struggling with this question for a while. what counts as tolerating it? is it if I'm able to function without debilitating symptoms after a meal? is it if I can keep it down? I have an elliptical/cross trainer machine, that I am able to use if the conditions are perfect (comorbidities), that allows a certain amount of food to move through my stomach. if I don't do it god knows the food will sit there for the whole day. but if I say to my doctor, I can tolerate a small plate of rice and tofu, that doesn't account for the fact that I have to do at least 10-20 mins of elliptical/cross trainer afterwards or I'll feel awful and everything will traffic jam at the top of my stomach...

that's the post. whenever I'm wondering how far along my food has moved, I just press along my stomach from the top until I get an exquisite tasting menu of my previous meal. fine dining indeed. I mean, who needs to be a squirrel and store food in your cheeks when you can just store it at the top of your stomach until you next want to eat something again! life hack y'all

edit- forgot to mention I can ALSO make a DIY trampoline by eating any actual portion of food and then drinking anything and it'll bounce right back up, still cold! if I don't laugh I'll cry...

I had a weirdly conducted GES. they used a different set of diagnostic criteria to diagnose me due to this, as stated in the medical guidance that they should. seems fine, weird, but okay.

my doctor says they can't help me and refers me to a new doctor. who completely ignores my GES because according to the usual criteria I don't have gastroparesis - despite the scan report clearly stating the different criteria they used.

this doctor then lies in my medical records (like flat out lies), ignores everything I said in the pre appointment notes and in the appointment. lies to me in the appointment saying I'd get a repeat test and new drugs to try - letter says nothing more is needed.

I'm barely keeping a healthy weight as it is (I'm actually steadily losing weight), with perfect environmental conditions and around the clock access to equipment and support that I won't have very soon.

I'm so tired.. I don't want to have to fight for basic care. I'm literally not eating enough to have the energy to fight. I'm already on calorie shakes and the advice this doctor tells me is to stop restricting my diet, eat meals instead of eating throughout the day, and avoiding processed food.

I know there are other people out there with similar experiences and that this fight will be won eventually because I have determined people on my side. I'm just so annoyed. currently doing the tedious process of getting my solids to move through my stomach whilst swallowing down the undigested food coming back up.

I wish I had a doctor I could actually talk through my symptoms with. some of my symptoms (water sometimes bouncing right back up, the patterns of my pain etc) aren't even fully explained by gastroparesis and I'd love to actually have a sensible conversation. ARGH!

I've only had very very minor types like numbing cream or dental injections so maybe it wouldn't be like this for proper anaesthetic, but I tend to overreact to it. like for numbing cream it's supposed to be numb for a few hours but it makes my arms numb for over 12 hours. this is the opposite of what I've heard usually happens with us?

although once I had a local anaesthetic spray for an endoscopy and it still hurt like hell so who knows.

my teeth started wobbling randomly a while ago but only very mildly, recently they've got much more wobbly, they wobble every time I eat or brush my teeth. still only moving a millimetre or two tho. I have no symptoms of gum disease, no history of dental issues, but I do have a connective tissue disorder.

I'm seeing a dentist in a few weeks (tried to get an appt sooner but couldn't?? idk what to do) but I'm scared of dental procedures and a bit stressed about this overall... I swear if I have to get any procedure conscious or if they get really wobbly I'm actually gonna have a breakdown I HATE dentistry I'd rather have 20 back-to-back gynecology appointments.

so I'll be staying at home as I get transport due to my disabilities and it's only half an hour away (and I'm not able to live independently) in london and I'm wondering about all the events and social things I see people doing during freshers.

I've never really been to a party/club/pub or had alcohol as I have many health issues (+ immunocompromised) and am neurodivergent so I'm not sure how much I'd enjoy it. I do want to socialise, I love socialising, but is freshers the time to be doing that when everyone is getting drunk and getting sick?

wondering what this legendary freshers actually entails and if I should be planning on doing it, whatever it may be?

so last year I was told I have chronic esopageal spasms, it's not confirmed via test as my fasting barium swallow came back normal which my eds specialist ent actually did say would happen (they said it would likely come back abnormal towards the end of the day). I do agree with this as it fits the symptoms perfectly and the previous diagnosis of reflux felt super wrong (I don't actually get reflux much mostly undigested food lol).

anyways this is just me complaining because it's taking away a bunch of safe foods, so between my esophagus, my gastroparesis, my plant based diet, and my sensory issues, I'm a bit screwed lol. just lost plain crackers, you will be missed.

so I'm classically trained in clarinet and am currently learning musical theatre singing. I have a decent foundation in piano (grade 4/5 ish) and haven't played piano in a few years, but want to restart. I always struggled with it because of the hand eye coordination required, it's impossible to read both treble and bass clef at the same time while watching both hands, obviously, and I just struggle with having to do things without seeing what I'm doing. that's why I love clarinet because my fingers are already where they need to be lol.

I have a connective tissue disorder so I do actually have a clinical cause for poor proprioception, I'm working on this through physio and dance (musical theatre) atm. does anyone have advice for playing piano with it? like what sorta stuff to be focusing on, any general tips or things I should watch out for (common mistakes etc)? happy to answer any questions about what I struggle with specifically or anything, would just love any insight!

hi guys! following my post a couple weeks ago about flossing (tysm for the responses btw, I've been so busy I haven't been able to reply but I am very grateful!!) I'm gonna book a dentist appointment. however my last experience wasn't great, they didn't listen to my problems and wouldn't even help remove my plaque build up. so I haven't been in over 2 years now.

my problems are mildly wobbly teeth (only if I eat chewy or crunchy foods), difficulties with flossing (I'm gonna try the methods u guys suggested!), teeth clenching (I'm gonna order a mouth guard where I take an imprint at home and send it- has anyone tried those?), the plaque build up that's still there from last time, and just worrying a bit about dental health due to dry mouth. if anyone has tips on how to approach those I'd be soso grateful, I'm worried I'm just gonna get dismissed.

also in case this doesn't work out, does anyone know of any dentists in london who know about this stuff and who isn't mega expensive? thanks!

bit of an odd question, but I was wondering if, say you have a hallucination from a medication or a fever. (in my case, a gastric medication prucalopride (0.5mg) seriously messed with my mental state. it took away my streams of thought and hyperfixations, made me feel so dull yet made my dreams horribly vivid and uncomfortable. I went back to normal when I stopped taking it. so on that medication and once with a fever are the only two times I've ever hallucinated.. or are they)

Q - can your brain somehow think it's okay to keep reproducing that hallucination? (in my case, I keep seeing a spider in my bed that I don't think is actually there, it's always gone when I turn the light on and it's only ever there for like 15 seconds when I wake up in the night- it either crawls away or I'm not quite sure where it goes. the first time I saw it it was bright red which is physically impossible as cone cells blah blah and it was anatomically wrong too but the last few times it's been smaller and less red. it's making me a little afraid to fall sleep)

context about me (but I'm also just curious in general) is that I'm a young adult female, I have a history of low support needs autism and mild anxiety/depression/trauma but have been cleared of any DSM5 level mental illness by psych in recent years. no history of recreational drugs, various physical health problems but no major neuro/vision issues except occasional migraines and some cognitive/neuro symptoms from neck instability but those are directly correlated with neck movement that is impossible to recreate in bed so it's definitely not that. also even that doesn't give me hallucinations it just makes me black out. I do have a tendency to get a little 'freaked out' about stuff though, when my cat had fleas I'd dream about them and feel them everywhere for a couple weeks even when they had been eradicated) but seeing things is a whole new level so I'm just trying to determine if it's a hallucination or if there's a spider playing tricks on me.

trying my hardest to fight malnourishment/weight loss rn and I'm so torn between just trying to get in more calories or actually trying to have nutritious foods (unfortunately the amount of foods I can have in both categories is slim or else I'd just be having tubs of peanut butter or something lol). I actually have a 2.4 kcal/ml nutrition shake but my sensory issues won't let me have more than one a day it just starts making me gag lol (does anyone else have this problem sigh)

but yeah it's so annoying how there are so many things you have to find a balance with with GP! like getting enough food vs hydration when your stomach doesn't have room for both.

I have PCOS, or as it's now called, PMOS, so every period is a blessing. even if it lasts a month and soaks through a night pad every hour. or so I thought..

for starters, a month ago I randomly started experiencing chest pain. okay, weird, but I have a stomach condition so I chalked it up to that because it seemed to correlate with mealtimes. then, I started having weird gynae symptoms that I don't want to get into too much detail with. followed by an extremely bad and unlike my usual migraines, migraine. coincidentally I also had a very bad few weeks with bowel movements around that time.

anyway eventually my period showed up and I was like oh it must've all been hormonal. 2 weeks later, everything is gone except the chest pain! feels just like what they say a heart attack should, except I'm young and on beta blockers so I'm 99% sure it's not. also it happened a lot and I'm still alive. so I go on a liquid diet to see if that helps, and guess what, it does! haven't had chest pain in a week. have still had horrific 9/10 stomach pains, have also lost a kilo. I have a GI follow up soon so I'll discuss it then, I'm not looking for medical advice here. BUT GODDAMN my last period really has given me a month and a half of horrible-ness lol! I really hope this all blows over soon. I love being a woman (although still feel more like a girl than a woman but I'll get there), but sometimes I am a little irritated that I was born a woman, if that makes sense.

so for context, I'm trying to pursue musical theatre as a young adult. I spent a lot of my teenage years too sick to do anything, and whilst my number 1 priority is to never be that sick again, the other thing that means the absolute world to me is musical theatre. I'd give anything to do it.. except my health. annoyingly I'm at much higher risk of severe ME because of my conditions and also just post viral illness in general so it's really something I'd want to avoid, I'm also a bit of a wimp when it comes to severe illness so idk if I'd survive it.

I'm currently having to choose what degree I do, I can't do two subjects where I live, and I'm picking between whether to study musical theatre or psychology (I want to have an academic qualification and have found a way to make up for the cost) first. however I've been told I probably shouldn't study musical theatre, at least not a formal degree with an agent showcase, until I'm ready to get into the industry. unfortunately going into the industry would mean unmasking for auditions and shows and I'm just not ready to do that with the current level of risk. which is a real shame because otherwise I believe I have what it takes and it would be an absolute dream come true!

(this bits a bit ranty feel free to skip it) there is a degree that's more multidisciplinary that I could do, it looks really fun and lower intensity which would be good for my health. I could do that and then do an Msc conversation psychology course, then either work my ass off or more likely fish out the money for a musical theatre MA when I'm eventually ready to join the industry. or should I say, if covid is ever over and nothing more nefarious takes it's place. but if I knew it would be better in 5 years, I'd probably do a psychology degree now and then just audition for drama school and go straight into the industry when I'm done with that. I worry though that if I just do psychology now I'll never get to do musical theatre and that's genuinely what I live for. I don't even care that much if I never get to be like on the west end, obviously it's my dream, but as long as I'm doing it in one form or another I'll survive. unfortunately to be masked in even community theatre etc I'll have to be super skilled which is why I want to train more.

anyway, I'm just wondering what the people who know more about this stuff think the world will look like in a few years. will we get a sterilising vaccine? will the world just be in a permanent state of pandemic from now on and humanity be absolutely cooked? and should I base my entire career and life as if I'll ever be able to unmask in any public spaces again? or should I just give up hope...

edit- forgot to say I don't really want to do psychology tbh, but more in the sense that I don't really want to do anything? like in my mind there's nothing except musical theatre and the arts that are worth fighting all my health battles for, and I wouldn't have the energy to have a life outside my job so it may be a tad depressing. but obviously I need all the health I can get to fight at all, so. one of my dream role is aged about 50 so I do have 3 decades to wait for covid to end for that at least?

I've had esopageal spasms which cause chest pain for as long as I've had gastroparesis but recently (since a bad bout of constipation sigh) the chest pain has gotten much worse and I'm unlocking new areas of pain 😩 I'm gonna go fully liquid for a bit to see if it settles, wish me luck! does anyone else get chest pain from gastroparesis? it's honestly bugging me more than the stomach pain atm, especially the tightness and the stabbing type pain is just awful!

so I got waitlisted on UCAS conservatoires and put that as my first choice on UCAS conservatoires. but then I have 3 offers on normal UCAS, and obviously I need to put one as my second choice so I actually get to go somewhere next year. but it'll only let me put something down as my firm choice, and I'm worried it'll erase my actual firm choice if I do that. how do you accept offers when you've applied via both systems and they don't seem to be coordinated with eachother 😭😭

without disclosing too much personal information, I'm not a mature student and I'm looking to do a psychology degree if I don't get into drama school (I'm currently on a waitlist). however my 2 options for psychology (brick unis- goldsmith's and city uol) are currently both presenting with some issues and honestly... I don't want to pay 30k just to be struggling the entire time and not have any time/energy to pursue theatre on the side.

I have a disability so whilst I could probably manage with help, I'm not in a position to do something full time and do anything on the side. however I would really like some independence as I've genuinely spent 95% of my life in my room since I was like 12. I'd also definitely try to do theatre society at a brick uni (not sure if my health would let me but I'd try) which I'd miss out on if I do open university, and most of the theatres near me are very inaccessible :(

I know for a lot of people, open university is a great option because of their situation (like disabilities, family committment, jobs etc). I'm just wondering, if my situation is kinda on the fence, is it worth it to sacrifice the experience of a brick uni and the practical elements of a psychology degree? and I know nobody can answer it directly for me, but I'd love to hear from people with similar experiences or anyone who did the psychology degree at open university (and how they found it- I'm very afraid of being bored on my degree). also if anyone has experience with disability support!

I've noticed the tickets have gone down in price (for me, a wheelchair user, anyway) recently and there seems to be a lot of empty seats. does anyone know if hadestown is struggling on the west end atm? I always imagined it would be around for a very long time and I hope that I'm not wrong! I've just booked tickets for next month and I'm looking forward to seeing the new cast, I loved the old one so much but it's always fun seeing new interpretations :)

p.s the proshot release should boost sales though at least! I'm so excited for that.

I genuinely can't floss the majority of my teeth, I either can't reach them or the floss gets stuck or my teeth just feel so precarious because they wobble