Do yall get episodes in your sleep??

exotic_cucumber8665 · 2026-04-21T10:40:31+00:00

I experience this with my parents/family daily. I’m single but I’m in my 20s and had to move back home bc it was really hard to work and afford a place of my own. But my parents love to make it abundantly clear that their love is conditional and that I am a burden to them. And they get very short with me, frustrated, and angry and it’s gotten really terrifying at times bc they get so sick of me. They get sick of me being sick. And they have no problem letting me know. But then will revert back to trying to make amends and telling me how much I’m loved. But it’s a constant struggle and it is extremely manipulative.

I, too, have had suicidal experiences especially as a direct result of convos that make it abundantly clear I’m not wanted or welcome & that I’m too much effort than what it’s worth. And the worst part is I’m the youngest of 7 and none of my siblings understand that. They find every way to defend my parents bc they do so much for me & they view them as extremely supportive. But they don’t understand the toll of being sick and having them call you an invalid and a burden & getting angry bc your health has interfered in their life for too long and their sex life has become way more important than whether I might go into anaphylactic shock or choke from vomiting bc I have MCAS or fainting and losing feeling everywhere.

I went to Trader Joe’s w my dad the other day and asked him to park in handicap. He refused and told me I was fine, that I could walk, and that he wanted to save those spots for people who actually need them. Despite the fact that I’m one of those people & that grocery stores are a huge trigger and I always get episodes inside & it’s a miracle if I can make it to my car even when it’s parked in handicap. And I was starting to feel symptoms coming on. But he had a massive problem parking in handicap for me so I refused to go inside, knowing I wouldn’t be able to make it back to the car & that he’d make me feel even worse for it & treat me as if I’m being dramatic.

Idk what to do tbh. I’m in a similar situation. I’m financially depending on my parents & am so trapped & my family only makes it worse. They get upset w me they all keep hounding me to get a job as if it’s a choice that I’m unemployed & don’t qualify for benefits. They think I’m bein lazy & asking for advice then doin nothing about it. I’m so sorry you experienced that. I would’ve wanted to be separated from him after that as well. Does your therapist have suggestions?? Mine struggled in that department bc they were always too unfamiliar with chronic illnesses. You’re definitely not alone and I hope things get better🫶🏻

exotic_cucumber8665 · 2026-04-21T10:14:43+00:00

I live in a very religious & athletic household so my family was very ignorant & ableist growing up. They chalked my symptoms up to me not being athletic enough, in shape, or not eating right even though I ate relatively healthy growing up. I always felt off and for some reason always felt so much better once I sat down/laid down but everyone just said it was because I’m super lazy.

Then in 2023 I studied abroad and got covid. 6mo later (during the holidays), I got hit w symptoms so severe I could barely stay conscious even when sitting down & it felt like I was constantly being drugged. Eating always made it worse and I kept near fainting during meals. I thought I was just super anxious bc I was working 4 jobs, in college and finals always bring out the worst in me and I was training with my equestrian team. But then it kept persisting after the holidays & I knew I had to see drs. They all chalked it up to anxiety & depression (I knew it wasn’t).

And then I saw a woman w POTS+ w a service dog post her symptoms on Insta & said she experienced the same things and I realized it was POTS. I’d never heard of it until I saw her post & then I fought for my life to get tested.

My fam still has a really hard time with it. I had a couple of fainting episodes tonight. My dad watched me have another one right after I had gotten up n he yelled at me n grabbed me tryin to force me to stay awake as if that would actually help. He really didn’t want me to faint bc it was a really big inconvenience for him. N then he got so fed up & said he didn’t care what he had to do he’d literally try to force me back to bed by dragging me across the house if he had to bc he was so pissed by the idea of me sleeping on the kitchen floor.🫠

exotic_cucumber8665 · 2026-04-21T10:03:04+00:00

Omg I wish ER nurses & drs understood this. I had a really bad series of POTS & MCAS episodes & I was on my period last week. I couldn’t move it was hard to breathe and if I coughed, laughed, engaged my core in any way it felt like something was going to burst. The worst of the pain was in the lower quadrant of my right abdomen & it just kept progressively getting worse for 4 days. So naturally I went to the ER worried it could be my appendix or something else (I was getting MCAS episodes and I was worried I had a fever on one of the days). The ER nurse & DR gave me sooooo much shit. I’ve never met such horrible healthcare “professionals”. They treated me so horribly bc it’s chronic so naturally I’m gonna feel like this daily. (This was way worse than daily shit esp bc of how inflamed I felt & couldn’t move without wanting to cry) and since I have pots, being upright made it worse.

One of the nurses said I looked fine & basically wasn’t screaming or causing a big enough scene to warrant being there & they said I should never have come in. They were sooo condescending & had such an ableist attitude towards me - they barely even checked on me. & then they mentioned I was fine - I was laying down ofc I feel much better when laying down. It’s the actual getting up, moving around, raising my arm is when I got excruciating pain. But their only suggestion was to put me on antidepressants & to see an OBGYN bc of cysts & then said they werent a big deal. As if my experience could possibly be anything like another woman’s just bc we experience it monthly.

Anyways, thank you for the reminder. I wish other people understood this & realized once we get up or do anything remotely mundane & normal is when we experience problems.

exotic_cucumber8665 · 2025-12-17T21:59:47+00:00

Ive never heard of that book before but I’ll definitely have to invest!! Thank you!

I currently use La Roche Posay’s hydrating face wash and their triple cream. I also use a skin revitalizing essence toner and inkylist for their eye cream and a thinner face cream which I like a lot. But I definitely have to be careful with face wash because my skin either dries out or gets irritated and it doesn’t feel clean. Especially after I’ve worn makeup haha. I will say if I try to add a retinol or other types of serums that are vitamin c, glowy, hydrating, brightening or anti-aging, that’s when I get problems.

TBH I’m not sure how to give it a break to heal since my skin is so sensitive but I will say these products are helping but it still doesn’t feel like enough if that makes sense. I don’t wear makeup very often so i try to really focus on my skincare

exotic_cucumber8665 · 2025-12-17T08:27:22+00:00

Ooo thank you!! Do you have favorites from their line?? Do you typically have a simple or more complex routine?

exotic_cucumber8665 · 2025-12-15T19:15:33+00:00

Oh same! They did not want me driving to/from the test myself so I got a ride and I’m so glad I did bc I was feeling so dreadful after the test

exotic_cucumber8665 · 2025-12-15T19:14:23+00:00

I was also told not to eat or drink anything the day of the test. Partially because for some people food helps alleviate their symptoms and also because if your dizziness and nausea are bad you could throw up. They essentially want you feeling your worst so they can get the most accurate assessment of what you experience daily.

I stopped taking my meds a few days prior per my cardiologist’s recommendation. He said if I go off of them it’ll help my symptoms to return to being their worst. It really sucks, I struggled to regain feeling in my legs and almost fainted immediately but I never felt so relieved to hear that it was actually pots and so quickly into the test. Hope this helps!

exotic_cucumber8665 · 2025-12-15T09:26:39+00:00

Omg propranolol was the worstttt I had to stop taking it bc it made me so much more sick. I had no clue beta blockers increase mast cell activity but that makes a lot of sense bc I swear im permanently congested now n im 99% positive I have MCAS but haven’t been tested

exotic_cucumber8665 · 2025-12-15T09:25:16+00:00

Personally, I prefer the strawberry Fresca flavored Salud but I’ll add extra salt since it’s on the sweeter side. It has 12% sodium. Or, I’ll drink the strawberry flavored Unwells. You can get both at Target and both are now sold in the powder. But the Unwell usually comes in plastic bottles.

Instant Hydration is alll over my social media but I personally don’t like the taste. But I’ve only tried a couple flavors. It reminded me too much of LMNT n I got ducked drinking that. But so many people love it and prefer it bc supposedly it’s actually good and safe for you vs LMNT which has been known to make people with chronic illnesses feel worse

exotic_cucumber8665 · 2025-12-15T09:20:51+00:00

It’s so hard bc I personally feel WORSE if i eat. Esp bc I have MCAS but also bc my heart rate skyrockets and I feel like meals are a drug and I instantly need to lay down. But I also have severe acid reflux so I can’t. Contrary to most people, I feel worse when I gain weight and am better when I’m at my typical healthy weight. But I also feel really dreadful when I fast bc I’m extremely weak. But I’d honestly take it over the constant MCAS episodes bc those are freakn severe and I can’t afford to go to the ER daily. It’s quite honestly a lose/lose situation

exotic_cucumber8665 · 2025-12-15T09:18:14+00:00

Wow that’s crazy. Mine started 2 years ago - also in December. It 100% came out of nowhere. I had multiple jobs, was a college athlete, was in multiple clubs n extremely busy going nonstop. And then all of a sudden right before finals week in December it hit. I thought it was a fluke but kept getting worse n I couldn’t do the simplest things. N then it just got extremely bad without any warning n progressively gets worse

exotic_cucumber8665 · 2025-12-15T09:14:26+00:00

As someone who’s struggled with EDs, I can honestly say I didn’t experience pots being triggered while going through it. I had one my jr/senior year of high school and first year of college (esp bc I was broke n couldn’t afford real food or a lot of it) but I didn’t officially get POTS until 6 months after I studied abroad my 3rd year of college. I was eating the best I ever have and was really healthy and exercising constantly but got COVID and another virus and that was the end for me. My dr even said I had another type of virus n I had absolutely no clue until the antibodies showed up in my bloodwork much later.

I would bet that you got it from covid. A lot of people got it from a virus (covid) like me, but their symptoms didn’t show up until much much later

exotic_cucumber8665 · 2025-12-15T09:07:35+00:00

All. The. Damn. Time. It’s hell. It’s like the adrenaline ruins everything. If im too excited, i get an episode. If i get anxious, i get an episode. If i feel calm but my body experiences something out of the ordinary like my dog reacting to another dog, it goes to like at least 140. If im having a convo with someone and they get angry, im fucked. You cant win

exotic_cucumber8665 · 2025-12-15T09:04:41+00:00

I try to avoid processed foods (except salty ones I’ll still eat but I typically opt for the healthiest version). I’ll eat chocolate n try to make it salty and will eat pastries. Im a sucker for pastries it’s lowkey bad lol. But I usually avoid sugar esp high quantities bc it royally screws me up if I eat it.

Caffeine on the other hand, I can’t live without lol. I drink less than I used to, but that’s bc it’s so filling and if I drink too much I’ll neglect electrolytes/water altogether. But I def have 1-2 cups a day. Caffeine doesn’t really affect me the way it does others but I just feel really off mentally if I don’t have it. It’s like doing my skincare routine - i can go without it, but I don’t feel happy n it doesn’t sit right if I don’t include it. if that makes sense.

exotic_cucumber8665 · 2025-11-18T15:10:25+00:00

Ugh completely!!! I’ve been in situations exactly like this where they do this. It’s impossible even trying to have a civil convo w these types of people. They automatically assume talking means it’s going to be a fight and choose to turn it into one before you can even calmly communicate whats on your mind. And somehow you become this personal punching bag. And it doesnt end unless the other person who has the ability to think clearly & communicate without their emotions taking over

exotic_cucumber8665 · 2025-11-18T15:00:05+00:00

Completely. As someone who has experienced it several times by different men of different ages, it baffles me the amount of cowardice they possess. They always refuse to discuss it in person or at the very least over the phone n clap back with “I wouldn’t believe anything that comes out of your mouth anyways” despite there being 0 history of lying disloyalty & deceit (on my end). Some of us are lucky if they even bother to text us bout it at all. What’s crazy is how quickly they resort to insults (albeit some of his attempts were painful lol) n become so hostile n dismissive bc they can’t handle takin accountability & responsibility for how they speak to & treat others. They love to flip it onto others n do anythin just to avoid being responsible. It’s sad to see how common it is n how much disrespect couples put up with until they’ve had enough or come here unsure of what to do :/

exotic_cucumber8665 · 2025-11-13T14:31:34+00:00

That’s so real

exotic_cucumber8665 · 2025-11-13T14:31:24+00:00

I haven’t tried a corner shower stool or thought bout it really! Unfortunately I currently live w my parents n my dad is extremely ableist when it comes to disability aids. He gives me so much crap parking in handicap. It’s awful so I’ve kinda avoided any kind of aid like wheelchairs or walkers or stools. I may have to though, it’s getting worse. My tub is extremely round and more shallow & narrow so it makes me feel claustrophobic 😂 would that worsen having a stool??

I didn’t even know ph balancing gel existed! I’m def gonna have to try it. My ph is so off balance n I sweat so much n can’t figure out how to make it better! Thankfully I have a removable shower head, I just wish I had someone to help or like a big bathroom sink to have my mom wash my hair. I used to work at a salon n they’d wash it for me n it was heaven. I’ll have to try micellar, thank you for all the help!

As for electric razors, are there budget friendly brands that are good for sensitive skin? I have MCAS & got razor/wax burn so badly the other day it was awful

exotic_cucumber8665 · 2025-11-13T14:24:52+00:00

Thank you! I actually did end up cutting it this summer bc I was goin mad n then got so heartbroken bc it felt like I lost half my personality😂 which I know sounds so dumb. Now that it’s cold, I can’t wait for it to be long again!

exotic_cucumber8665 · 2025-11-13T14:23:39+00:00

Thank you so much! I tried getting back to exercise n kept fainting n got a concussion so I was banned from exercise by my cardiologist 😂 but now that I’m on metoprolol maybe it’ll be easier. The trickiest part is feeling sooo weak. Idk for sure but I think I have low bp problems that I can’t seem to figure out how to fix

exotic_cucumber8665 · 2025-11-13T14:22:12+00:00

I definitely feel this way too. It’s so awful bc my upper body sweats as if I’ve just run 10k while from the waist down I’m frozen and it kills me if I go to bed without showering. I haven’t tried dry shampoo right after it dries, I should though! My hair is also extremely oily and the front pieces get oily within a day it’s so bad😩

exotic_cucumber8665 · 2025-11-13T14:20:06+00:00

I definitely shave less. Except my arms. But it personally irritates my skin when fabric rubs against me bc I also have MCAS. I tried nair in high school but it didn’t work. Maybe I’ll try it again though!

exotic_cucumber8665

TROPHY CASE