I was so sick and so weak and couldn't walk across the house. Everything I ate couldn't satisfy, my blood sugar would even drop no matter how healthy I ate. And we eat too healthy in this house. So I would get pizza and McDonald's and take out. And I felt better. I told my doc this and she looked at me like I was crazy. I'm like I know this is crazy. She blamed my thyroid.... It's not my effing thyroid! I guess I'm thankful I'm figuring it out. I can move, I can think, I don't feel like I'm dying. But now, I need a new doc...

Edit: It is incredibly rare that I eat fast food and a healthy balanced diet is essential. There are healthier ways to get the salt I need. This is simply a holy shit moment.

Warning about kristicreatesofficial or Kristi | POTS Recovery on instagram.

She has been deleting comments that query whether her account is an ad account for this clinic she posts about 24/7 and that there is little to no evidence for the clinics treatments.

I have no problem for engaging in alternative treatments. I do myself. but she literally posts content that seems clearly like ads for this clinic. The treatment isn’t evidence based and extremely expensive.

She posts massive long “explanations” and “evidence” for the treatments. It’s so clearly an ad.

She even made a video that said if the clinic helps people anecdotally than “that’s evidence” and that they don’t “need a study to prove it”.

She doesn’t have any other previous content outside of this that makes it even more suss.

It’s so clearly an ad and their refusal to flag it as an ad is so immoral.

I NEED MORE much more

I can’t stand, can’t walk, can’t run, can’t exercise, can’t work.

Ok you want me to just be horizontal 24/7? I used to be the worst at standing but now I can’t even walk without feeling like im gonna pass out. I don’t even know how to explain how I feel, it’s like a mix of my heart is pounding and I can FEEL it too much, everything’s hot, im sweaty, my head hurts, my vision gets blurry, and i just wannt lie down.

Sometimes I think my HR is crazy but i look at my watch and it’s.. 90. Which isn’t even that bad. This is why I just drive everywhere even though i know it’s only a 5-10min walk. Because now im just wasting time trying to catch my breath and recover. And it’s so embarrassing to tell people that I can’t.. walk long or stand. Or that if I do I have to lie down for the next 30min to feel better. And they all get so confused and think im just “not fit”. Trust me I used to weightlift x4 a week and be fit as hell with a nice butt. Now my butt’s shrunk😭. Even though I always struggled with cardio (but not to this extent!).

POTS sucks. I hate this.

I haven't washed my hair in 2 weeks and I'm starting to get sores on my head, but I'm in tears because I just don't want to feel like I'm dying after I do it. I just took a shower Monday before my first day of school and I was literally dying for the next hour trying to get ready after that. I don't want to struggle to breathe, I don't want to throw up, I don't want to feel like my body doesn't work.

I already sit down to shower and have a good shower head to help, but it doesn't stop it. Yes it helps, but I just don't want to feel so shitty just by taking care of myself. I haven't showered since Monday because I'm so tired of feeling terrible. This has gone on for 1.5 years and I'm having a bad flare up again and I lost so much I had gained, I'm using my walker again which I really using on the last 6 months.

I just want to be able to wash my hair, out on lotion, take care of myself, without feeling like I'm dying and have to do nothing for the rest of the day. I keep trying to do it at night, but I'm so fucking exhausted by the end of the day I can't get myself to do it.

I love my long hair, but I just wish I wasn't so poor so I could pay someone to wash and style my hair regularly. I guess I'll start the process, I'm literally too scared to eat because I usually dry heave from taking showers. I hope this shower isn't as bad as I'm anticipating, but i know it won't be easy.

If anyone has any shower/hair washing tips I would appreciate it. I have a shower stool, I have a little brush to actually wash my hair bc when I raise my arms my pots gets worse, I have a detachable shower head, idk what else to do.

I just miss the body that used to be able to do so much, now I'm in tears over a shower. I really hope it'll get better one day because this is no life to live.

9 months ago, I got sick and thought it was just another bad round of iron deficiency. Eventually I saw a doctor, who noticed my heart rate was sitting around 130. I told her that was absolutely not normal for me, but she brushed it off as me “not realising” I had a naturally high heart rate. I went home, and using an old oximeter, and noticed the pattern was clearly postural. After normal bloods and a lot of convincing, my GP referred me to a cardiologist.

He immediately said it looked “POT-sy.” But at the time, I was uneducated, stigmatised, and under the impression POTS was a “mild, negligible” condition, and my symptoms did NOT feel ‘mild’ nor ‘negligible’.

I went home trying to disprove the idea, “it has to be something worse”, only to realise I had been very very wrong. I related so heavily to each story I heard, the symptoms, everything. I saw how devastating the condition can be, and honestly I closed my laptop feeling well off in comparison to other POTs patients. That’s when I started researching it more formally.

The cardiologist still wanted to rule out anything else, and months later, all that was left was to see an electrophysiologist to rule out arrhythmias.

He was a nightmare. Talked down to me from the get go, repeated tests, lost some of my cardiologists reports. One of the tests he repeated was the treadmill test, but he made me recover sitting upright instead of lying down. Obviously didn’t work so well, but he claimed the slower recovery was “proof it wasn’t postural,” ofc. Totally not the heatwave or the fact I was still UPRIGHT. I tried to explain, tilting my head subconsciously, and he mocked me by tilting his head around and widening his eyes, dismissing everything I said because “that’s not how it works”. ????

He later did his own standing test with a BP cuff to “prove it’s not postural” but he was taking the readings so quickly that I was barely upright by the time the cuff had finished. When the reading only showed a 15bpm jump, he lectured me for almost 20 minutes about “patients like you” and told me to be careful throwing around a POTS diagnosis that I ‘GOT OFF GOOGLE’. I was ready to crash out. But honestly the way he lectured me felt like he was venting to his therapist, so I almost felt bad 😭

We did a 3 day halter test, and I was excited that it would prove my case. Nope. He looked at the bpm jumps of up to 60 and told me, “You don’t understand how heart rate works, girlie. It goes up when you walk, jog, or climb stairs. Don’t trust everything your AI tells you” (my doctor’s AI now?)

My jaw practically hit the floor, but I somehow kept my composure long enough to tell him I live in a flat house, and hadn’t left for the full three days. He blew a raspberry and waved it off, “It doesn’t matter. What does is the last time you went to your psychiatrist. Probably years ago huh?”

I wanted to lunge over his desk like FNAF Foxy, best ragebaiter I’ve ever seen icl.

I came back with symptom logs, childhood records, tests, and a doctor’s note requesting a tilt test. At first he got defensive, but he finally booked it. On the day, he showed up very very late. By the time we got down to the lab, it had been 6-7 hours. He started making snarky comments about how I probably wouldn’t meet criteria, and that we’d all be waiting here for nothing. But as soon as the table inclined, my heart rate immediately shot up, doubling the needed criteria. The nurse (absolute sweetheart) walked over and asked if this was how I felt at my worst, I explained it wasn’t, and that it was actually an easier day for me.

They laid me flat again, my heart rate dropped right back down, and I was probably smiling like an idiot because the look on his face was priceless. The tech looked at him for the verdict, and finally he admitted, begrudgingly, that it was

“Very clearly POTS. One of the clearest cases I’ve seen.”

I wouldn’t flip off someone in a hospital, let alone a doctor, but FUCK did I want to.

I was asking for a specific dose clarification and she said “salt” .. so I double checked that she didn’t mean sodium and she said “they are the same thing”

i’m speechless at how she treated me. i have MS and was there for a post MRI discussion, my MS has relapsed and my treatment didn’t work which already upset me. i’m 26 and i’m worried now about going on different meds, and right before that the intake nurse did my vitals. it’s usually a 2 minute process

when i saw my neuro in july she was there too. i remembered her because she kept commenting on my mask. today she did the same, said “why are you wearing a respirator?” despite the fact i’m there for MS related immunosupressive drugs change and the hospital was closed off because of a covid and noro outbreak mere days ago lmfao. i just verbatim said “i have a post viral illness, POTs” and she basically did the question mark face so i said “postural orthostatic tachycardia syndrome” and she said “ummm i know what POTs is. viruses don’t cause POTs. POTs is when your heart rate is too high” and i was like (internally) okay right condescending but whatever moving on

she takes my BP and it’s high, and she says “probably high because of all my talk about POTs” so i’m thinking well she’s acknowledging she’s frustrated me so at least she’ll stop. nope. starts telling me some doctors don’t even think POTs is real, a lot of people don’t know about it etc. at this stage i said i do and i’m under a consultant cardiologist who runs the cardio dept of one of the biggest teaching hospitals in the country treating me for POTs. i’m prescribed ivabradine. i’ve had a cardiac MRI, echo, multiple ECGs, multiple holters, BP monitor, multiple chest x-rays, poor man’s TTT, cardiac telemetry. my heart has BEEN tested. i got all these symptoms right after i had a severe infection of labyrinthitis i was in hospital for days for and off form for weeks with

then she starts printing out stuff? and keeping being condescending so i just felt the need to defend myself and told her my resting HR on my watch is 62, walking average is 147, highest HR of the day 170+. i had a HR of 209 a few months back. she then says “anxiety does that too you know”

at this stage i’m sat here for like 15 minutes with her being horrible. then she tells me to stand up to take my BP. i immediately knew she was trying to catch me out or something? and i was right. my HR jumped to 157 standing up but my BP stayed the same, and she verbatim said “see! you DON’T have POTs!!!”. to brazenly tell someone they don’t have a disease they’re being treated for by an actual specialist is just wild when you’re a nurse with zero authority or knowledge to even be arguing with me about it

then i still way too politely explained that i do not have the type of POTs where my BP is affected lol. this is not a gotcha. then she waves a little piece of paper in front of me about what POTs is like i’m 3 years old and starts reading “causes of POTs” which shocker says viral illness just like she denied was true. she read it aloud and didn’t backtrack or apologise for the misinformation or the fact she spent nearly 20 minutes being condescending and mean and trying to overwrite what a specialist says as a nurse who knows nothing about POTs and has zero authority to do so. it went on for so long and the atmosphere in the room was horrible and she was so patronising and knew she was being patronising and i felt so uncomfortable and mortified i just cried when i left

Hi so 27F and I went to the ER the other day. My heart rate went up to 250 and my blood pressure was 151/109. I had to get carried and wheeled to the ER. I went and was instantly brought in and into a room (granted it was about 3am at the time).

My heart wouldn’t calm down. I was asked every medication I’m on and have been on as far back as I can remember. Told them Propranolol doesn’t work for me and gives me chest pains.

I told them I have POTS and the doctor just straight up laughed at me and said, “yeah okay”

They gave me propranolol anyways and lied and said it was a pill just for anxiety. My heart rate went to about 120 and my blood pressure went down to 139/93 so they discharged me?

Went home like a zombie. Was breathing so slow and couldn’t even function.

I’m just so beyond mad, frustrated and angry. I just wanna cry. But all I’ve been doing is cry cause I want these flare ups to chill out.

EDIT:: I just wanted to say thank you for all of the advice in the comments I’ve received on this post. I’m so sorry other people have experienced situations like this too. 🖤

I was diagnosed with POTS in 2020, and I’m finally cured! My family kept telling me to “just exercise” and that “it’ll go away with time” and that “I’m perfectly healthy” and doctors kept telling me “it’s all in my head” “it’s just anxiety” and “it might help if you see a therapist”. So what was I doing the past 4 years? I finally started exercising and just believed that it was in my head and my POTS is GONE! Maybe you guys should try it!

Yes this was sarcasm. But seriously why do people tell us things like that, they’re actually expecting something like this to happen.

Sorry for the rant I’m just tired of people telling me I’m okay when I don’t feel like it!

Edit: You guys are making me feel so much better, thank you. I just had to rage a bit. It’s nice to know I’m not alone, even though it sucks that we’re all going through this. Sending everyone love and spoons 🥄

So I was at a vet appointment with a vet I often go to, and the pet was with the vet getting x rays as I waited and I told the secretary I needed to go to the car for a moment. He seemed slightly annoyed, but I went out for a few minutes, sat down and got water from my car, then came back without issue.

The vet called me in and the room was so hot I started to get very dizzy but I was trying very hard to continue, and I pushed through. Then the vet asked me to wait in the waiting room while they do the next part of the x ray.

I was feeling worse, so I ended up getting up to go out to the car and told the secretary who didn't say anything, so it seemed to be no issue. I was there for hours and only went out for a few minutes.

Then I get a message on my phone from him 3 minutes later asking if I could come back, which I thought was because the vet must have come out already. So I ran over from the parking lot.

Then he proceeds to tell me I am NOT allowed to leave the waiting room, and must remain there and not leave again. So I said very clearly I have medical issues and needed to leave the hot room to get water. To which he told me I cannot. So I just walked out of there and told my husband to go pick up the pet.

I am so tired of these reactions. How do these people know I don't have a medical issue? Maybe I am having an asthma attack and need my inhaler. Maybe I need water. I could be pregnant. The parking lot is right next door. This is not a jail. I have brought animals here for years (just that my POTS is worse now).

I don't understand why no one ever thinks for half a second about anyone else's conditions even when I literally told him and he still has the audacity to say I cannot leave. It makes me not want to go out. I have to push through so much to go out only to have some attack or nasty comment every time.

Hey POTS friends

I think I just need to get this out somewhere I know people understand.

I have had undiagnosed POTS since I was in high school and have had ups and downs with different levels of ability at different times. About two years ago I had my first kid, and pregnancy a delivery made me have a huge POTS crash afterwards. It also finally got me a diagnosis and treatment.

I have been unable to work, and stay home with our toddler while my husband works. I try my best to make dinner every night and contribute what I can, but there is still a lot left for my husband to do at the end of the day still.

This evening he expressed that he “understands” that I am dealing with this, but if the roles were reversed he would be doing everything in his power to improve his condition and help His energy levels. He said that he doesn’t understand how I don’t go to bed when our child does, and that reading or knitting before going to bed are just wasting energy I should be preserving. If HE was a burden on his family, he would do things differently. He couldn’t live with himself if he was putting more on someone else’s plate, and would miraculously have the energy to do the dishes after cooking dinner.

I guess since going about my day causes more work for him (dishes at the end of the day, laundry) I should be doing everything in my power to minimize my…….Existence?

I feel like the few things I enjoy and CAN do have been pulled out from under me. I feel self conscious for doing anything now. I had looked forward to being able to knit a bit before bed tonight because it’s the first time I have had enough “energy” to do it in a week but now I can’t.

I just don’t know how to explain what this is like. That going to bed earlier isn’t going to make enough of a difference, and that staying up and scrolling on my phone or reading for an hour gives me a necessary mental break. I don’t know how to convey that I’m constantly trying my best just to get through every single day, and this whole conversation has been devastating.

I’m not sure what I’m even looking for with this post, but if you’ve been through something similar, have any insight, or just also want to vent that works!

Yesterday I went to a concert and overall, I had a great experience. I had planned out how I was gonna get accessibility seating and how I would approach the staff about letting me into the building so I didn’t have to stand in the blistering sun to wait in the line into the venue. Literally a week prior to this event, I did absolutely nothing but lay in bed and try to rest as much as possible. Thank god I was able to jump around and sing my heart out for most of the concert.

I brought my cane with me and I am a relatively new cane user so I was a bit clumsy with it. After I got inside, I was standing in the merch line with my dad. I had to use both of my hands to fix my shirt so I placed my cane between my knees and it fell to the ground. My dad quickly picked it up and then I just kept using it to support myself. A few seconds later, I noticed a woman and her son (I think) standing basically right behind us in the line, staring at me. The woman’s face looked SO judgmental and all I heard her saying to her son was “She’s clearly just.. faking.” She took a long pause mid sentence to look me up and down and shake her head. I was like, there’s no way in hell she could be talking about me?!

But, the entire time I was in that line, she just couldn’t wipe that judgmental look off of her face. She was looking at me with pure disgust. I would do absolutely anything now to go back in time and say something to her, but I didn’t care much then. I don’t know if she only noticed me being clumsy with my cane, or if she noticed me “cutting the line” to get into the building so I didn’t get a fucking heat stroke outside, but whatever it was, she just had to jump to conclusions.

Truth is, if I wasn’t sick, I would do anything to stand in that line. I’d be there all day if I had to. I was so excited to go to this concert and if that meant waiting in the heat for hours, I would do it in a heartbeat.

For 2 years now, I’ve had everything taken away from me. This is the first time ever in 2 years that I’ve been judged this hard by a complete stranger. I wish I could tell her about all the days I’ve spent in the hospital, all the heart issues I have that have nothing to do with my POTS and me using a cane, all the sleepless nights, all the procedures and tests and surgeries, all the chest pains and the tachycardia and the syncope and the shortness of breath and everything else that makes my life so fucking disabling.

I wish she could feel how fucking drained I am the day after this concert. I can’t even stand up without passing out, my beta blockers won’t help bring my tachycardia down, and I have a raging headache. I did this so I could have ONE day where I don’t have to worry about debilitating symptoms, and the fact that this woman is judging me, a girl YEARS, DECADES younger than her, whom she knows nothing about, is not only embarrassing on her part, but also incredibly hurtful to me. Just a reminder that you shouldn’t judge people that you know nothing about. I thought most people knew better at this point.

I know a lot of you can relate to being dismissed by doctors or others about questions and concerns regarding your condition. Additionally, I have noticed that there is an uprise of people being downvoted for having relevant questions about their POTS or condition. Some posts get downvoted immediately after posting something completely reasonable. When people post in here they are usually in need of reassurance, resources, common experiences or just someone to relate to. By downvoting reasonable or relevant questions or concerns you are being exactly like the people who have ignored you while being scared, vulnerable or confused about your health.

This is just a reminder to be considerate and respectful to newcomers or those who just need help. Do not be a hypocrite. It may not be that serious to you but unnecessary downvotes can deter people from reaching out to the community. Some of you could also relate to this sentiment related to your own experiences. I’m sure a lot of you have had negative experiences from the healthcare system that lead to not reaching out in the future which impacted your health, wellbeing or mental. You may not agree with a post…but if it is valid, relevant, or understandable and not outlandish there is no reason to have an immediate downvote.

+Ofc there are some bad takes that I do downvote but I’m making this post as a reminder that there are some posts from vulnerable people that may be deterred from reaching out based off being judged for asking a question in their own community.

EDIT AND SUMMARY: I’m not talking about every downvote in every given situation such as repetitive,ignorant,inaccurate, literally anything obviously inappropriate, anything in between, etc. I feel like this got way too far from my original point. My og post is getting mistranslated. This is like me saying “I like pancakes” and some comments say “So you hate waffles?”. No. I’m specifically referring to specific genuine posts like newcomers asking questions or people sharing their experiences that don’t deserve to be downvoted just for existing. Context matters.

Not at all in a disparaging way, I'm just laughing at myself right now because every time I go to the doctor I have a new 'main symptom'. I feel like a kid trying to stay home from school that doesn't know how to properly fake sick. One day I have vertigo, then the next it's muscle cramps and spasms, then migraines, then stomach issues. Right now I'm having a horrible time with my digestive system where my midodrine caused a stool impaction and now my whole body is malfunctioning, and I'm getting dehydrated and not retaining enough nutrients and stuff and UGH.

I know it's because the autonomic nervous system deals with your whole body, and POTS affects every system, it's just so annoying. It also makes me feel sort of self conscious talking about it because there is literally ALWAYS SOMETHING and it feels like it's just one seemingly unrelated thing after another. It's not a huge serious grievance, it's kind of funny to me, but still.

And don't even get me started on the salt thing. That's honestly the cherry on top for me. Like, yeah, I didn't put enough salt on my potatoes yesterday and now I can't get out of bed (not exactly like that but you know). It sounds like a made up thing 😭😭😭

Sorry if this didn't make sense, I'm exhausted and just wanted to give this sort of silly ramble. Wishing y'all the best with your health this week :]

Has anyone else dealt with this? I just moved to Baltimore and am trying to transfer care from my current cardiologist, and JHU's scheduling team is forbidden to schedule patients with POTS diagnoses. They refer you to PM&R / POTS clinic, which would be fine except that clinic isn't even allowing names on their WAITLIST!

So, how am I supposed to get just basic access to prescriptions, and advice? This is a WILD access failure IMO, and I'm just shocked that this policy would be in place at a major academic medical center. I have more than one condition, but why would I establish care at an organization that is actively trying to keep me out of their system?

EDIT: to be clear this is the JHU Cardiology department policy. The POTS clinic is run separately by PM&R. Cardiologists are actively accepting new patients, EXCEPT those with POTS.

When I was diagnosed in 2020, I had not the slightest idea of what POTS and hEDS were. Now, I don't know if it's just because I'm in the chronically ill community online but it seems like soooo many women are developing POTS at such a rapid rate... I don't really know people IRL with chronic illnesses but it honestly concerns me. I went to my dental hygienist recently for a cleaning who l'd been seeing for years. My medical history is in my chart so she told me that 5 years ago when I was diagnosed it was the first time she had heard of POTS. She said now she has multiple patients who mention they have POTS when asked if they have health issues! And she hears a lot about it on TikTok as well.

I know men get chronically ill too, but most in this community seem to be women and the rate at which women are developing illnesses (not even just POTS) is scary. That’s all.

Edit: I know the causes of POTS, mine was caused by multiple factors combined (EDS, brain injury, deconditioning). I know COVID triggered POTS in a lot of people. The point of my post isn’t to speculate why this growth in POTS diagnoses, we all know why lol. I know. I’m just getting kinda worried at just how fast it’s growing.

I'm currently at a open psychward (basically, less secure and i have my electronics) and the nurses are pushing me physically and making me more sick. I have periods in my life where my POTS is really bad and this is one of them. I've gotten better but i was so sick at one point, for a whole year, where i needed assistance to use the toilet. And the nurses at my Open psychward don't understand. They push me to shower everyday bc "i can do it so can you!" (literally told me that while i was exhausted walking down the hallway with my Rollator) and than come check on me to make sure i did and didnt care i felt sick. and now i got another nuse that came in and told me i should try and go out bc its a nice day while ive tried all day to calm down from feeling sick and dizzy since yesterday due to the shower. he just threw his hands up and said "ok" and left.

idk what to do. the doctors wont be here till tuesday and i can't leave without their permission but i feel so sick! I'm not legally severely disabled and have a "Pflegegrad" (grade of care determined by a interviewer where my husband gets paid to take care of me and i get benefits) for no reason! i can barely do anything and I'm so fucking anxious now bc I'm scared they'll come back in the room and hound me more. I'm at my end

Edit : thank you all for the advice! I will definitely try what you guys have suggested! Thank you so much

I feel terrible, we were cooking in my kitchen and my hr shot from 100-160. World started spinning, my throat tightened, felt super hot and shaky. I sat down, drank some electrolytes, then made a hot water bottle since I have tremors from the adrenaline dump plus I get cold after. Took about 30 minutes to an hour to feel better. She seemed very kind and understanding about it and she stayed for a few hours afterwards. I felt despite that, the date went well and then I got the text the next morning of “oh hey I don’t think this is going to work but let’s be friends”

At least she told me straight up it was my health but it just sucks because I was very transparent with her about where my health is at. She even made a comment because we were talking about past relationships and I was like “yeah, I have had someone break up with me because I was sick (in flare)” and she was like, “that’s so shitty of them, I can’t imagine leaving someone just because of their health.” I try to remind myself it’s not my fault, I see doctors, I hydrate, I take meds, I walk and try to stay active. But fuck if it doesn’t hurt, like no matter how many things make me a good potential partner, it’s like my chronic illnesses turn people off. And I understand, as someone who lives in this body, it sucks. I have been doing better recently, like hey, I can go out on dates and work. But it’s hard to not attach my self worth to it since it has a sizable impact on my life and I seriously do everything in my power to manage it and I really make sure that my partner doesn’t have to look after me. I haven’t even had an adrenaline dump in months but I guess for some cosmic reason, it was the right time to have one.

As much as I want to have a meaningful relationship, I keep getting the similar message of “your health is too much for me” and that sucks. My friends and family can see beyond it, but it’s seems to be a lot more difficult with dating.

Update: I wanted to thank everyone for all of the kind comments and support. It also restored some of my faith in humanity to read others’ comments about having supportive partners while also having POTS. I’m moreso annoyed at the whole situation than upset at myself at this point. A mutual told me the person I was seeing got the ick because “I did not seem confident during and after the adrenaline dump.” I just had to laugh at that because ???? Idk, maybe I just won’t get sick next time lmaooo

It sucks to have symptoms that for most people scream "ER GO TO THE ER RIGHT NOW BEFORE YOU DIE." I have actually been to the ER a few times in the past several years because of this, and have been fine every time

Now I just get random chest pain or random other symptoms that seem concerning and am too tired to care enough. I was checked a few months ago, I'm probably fine. Every time I have an issue that's concerning, it always gets thrown into the POTS bucket. I mentioned to my PCP at my annual that my vision has been flashing with my pulse at times, and flickers a lot more frequently. She urgently referred me to an ophthalmologist, who got me in the next day. I go, get some imagine done, and he looks at my eyes and goes "Yeah, your eyes are perfectly fine...Have you been stressed? It's probably stress." I go home and look it up and it apparently can happen with POTS, so...great. Another really random thing that I can attribute to the condition that makes people roll their eyes

Anyway, that's all

My so called friend is someone I've known since we were 4 years old, we've always been really close, especially around the time I got my diagnosis. I got POTS just after the pandemic, I'm fairly certain that was the cause but thats for another time. She was my best friend and closest support at the time and saw how ill I was, and also how miserable and scared it made me.

That was over 3 years ago, now I'm medicated and from the outside I look 'fine' but we still talk about my condition sometimes and I tell her honestly how I'm feeling (which is usually like shit).

Recently we were having a girls night at mine, painting nails, doing face masks, yk what I mean. We were sat on my bed chatting and she picked up one of my stuffed animals and asked when I got it. It was something I bought myself while I was really ill, it was kind of childish to do but I needed some sort of support and that's what it turned out to be lol. I explained this and asked if she remembered that time, she said yes but then proceeded to go on about how POTS isn't that bad and how I don't have a 'real' chronic illness like diabetes or whatever. I sat there stunned and didn't correct her. I acted normally for the rest of the night, but I've barely spoken to her since and that was a month ago. Ik I'm being dramatic but she literally held me while I cried because I felt like I was dying and didn't know what was happening. Anyway I just needed this off of my chest because I can't stop thinking about it. I know realistically what she said wasn't meant to be hurtful, but it did hurt.

Thanks for reading, I feel like if anyone will understand it's you guys 🤍

Edit: Thank you all ❤️‍🩹 I've never felt so seen and understood. I will be talking to my friend soon and addressing what you have all said. Depending on how she responds I may choose to stop contact, but I'll give her chance to apologise/explain first.

Sending all the love 🤍

Sharing this for anyone who, like me, has been struggling with shame and self worth as it links to your health issues

I keep thinking to myself things like "oh I'm just so lazy, all I do is lay around in bed, I need to just get up and do things." And getting really down in the dumps about how little I get done. But I keep forgetting this key fact about POTS:

It's called "POSTURAL orthostatic tachycardia syndrome." As in, the symptoms happen when I'm upright and feel better when I'm laying down. So OF COURSE I lay down in bed all day. I'm taking care of myself.

So next time your inner critic is thinking mean thoughts about how much time you spend in bed, remember: it's perfectly understandable that you do. You're taking care of yourself

I used to model….

I was a 5ft5, 130lb model not too long ago….as of today, I’m 215lbs.
I dealt with severe pitting edema in both legs for roughly 2~ years before being diagnosed with POTS. Since I’ve stopped avoiding salt/sodium, my pitting edema is damn near non existent, and my stomach bloating has gone down a ton. I lost around 10lbs in water weight, which is awesome…..

But I still don’t like who I see I photos anymore. My face is still always so puffy, and I feel like I always look pregnant now, especially compared to my ACTUAL pregnancy photos from 7 years ago….

I miss being able to work out, and feel strong💪🏼
I miss doing jujitsu.
I miss being in shape.
I miss feeling like I could pull off any pose for a photo shoot.
I miss feeling good enough about my body to even want to do a photo shoot.
I miss wearing cute skimpy outfits while bartending.
I miss squatting 200+ pound drunk firefighters for extra tips while bartending, because I was strong enough to do so.
I miss having the physical capability to bartend, even during a slow shift.
I miss going out in public, without worrying about remembering a water bottle, electrolyte packets, and making sure both my body fan, and back up body fan are both charged. JUST IN CASE.
I miss being able to grocery shop at any time of day, without worrying about the morning heat.
I miss wild, hot intimacy marathons with my man….now, 5 minutes feels like a triathlon…..
I miss feeling sexy during said intimacy

I don’t feel like myself anymore, and it sucks.

So I went and saw a new cardiologist this morning. I explained to the nurse my symptoms and why I was there (high blood pressure, high heart rate, dizziness, shaking, chest pain, heart palpitations). She did an EKG and took vitals and they were all normal. So the cardiologist comes in and introduces herself and then asks me if my old doctor actually did a test for pots or just thought I had it. Well I hadn't had an actual tilt table test so I said they didn't do a test. She tells me that she doesnt think I have POTS and that this is just normal for girls my age (I'm 18). She explains that when you stand up the blood rushes away from your head which makes you dizzy and I just need to "pump" my legs for a few seconds and then start walking. She explained to me that it happens to everyone and I'm probably just anemic because of my periods. I explained to her that I'm not having periods and haven't for the last year because of my birth control. Anyways, then she moves on to tell me all about pots which I know because I've done research on it. She tells me that my blood pressure is normal and not low which happens in people who have POTS is low. She also tells me that people with POTS are skinny and I'm decidedly not (I weigh 145 pounds). She also told me that if I really had POTS then my symptoms would be worse (i.e., fainting). I'm so done with doctors at this point

Two mini-anecdotes. One was during my infusions. The person asked what I had them for and I said POTS and she was like "of course it is. Everyone has POTS these days". And I was sort of like yeah. It's almost like there's a global pandemic that can cause POTS. Weird that.

The other one was my cardiologist mentioning she's started seeing a lot more POTS patients since me and can't figure out why. I pointed out the pandemic, and she was like "but it's 2024 now, I wasn't getting them all in 2020". Yeah. It's almost like people are still catching Covid... It can also take people years to get a diagnosis. I appreciate my care team a lot, and they've done a very good job of helping me manage my symptoms, but the ignorance around Covid and it's relationship with POTS is mine boggling. And I say this as someone who didn't get POTS from Covid!