I wanted to post this because I spent months feeling confused about why some of my symptoms did not fully fit “just POTS.”

After a major infection in 2024, I developed POTS/dysautonomia symptoms: heart rate spikes, lightheadedness, dizziness, adrenaline surges, near syncope, feeling awful standing too long, etc.

But there was another layer to what I was experiencing that felt completely different and honestly scared me way more.
I was dealing with:

-derealization/disconnection even while lying down

-visual overstimulation

-malls/grocery stores suddenly feeling unbearable

-fluorescent lighting feeling “wrong”

-random drop

-weird sinking/falling sensations walking on ramps or sloped surfaces

-feeling mentally foggy or unreal after busy environments

And that part did NOT feel purely orthostatic to me because sometimes I could literally be resting in bed and still feel disconnected/derealized.

Eventually I came across PPPD (Persistent Postural-Perceptual Dizziness) and it explained so much.

From what I understand, PPPD is more about the brain/vestibular/nervous system getting stuck in a hyper-alert state after an infection, vestibular issue, panic spiral, dysautonomia, chronic stress on the body, etc. So your brain starts over-processing balance, motion, visual stimulation, surroundings, all the time.

For me personally, POTS explained the cardiovascular/autonomic side of things, but PPPD explained the “why does the world suddenly feel visually overwhelming, heavy and unreal?” side of things.

Posting this because if anyone else developed POTS after an infection and is also dealing with derealization/visual overstimulation even while resting, please look into PPPD/vestibular dysfunction too because realizing there was an actual explanation behind this made me feel way less alone 😭

I have been diagnosed with POTS since 2019. Over the years it had just gotten worse and worse. 4 months ago, I was in what I thought was a really bad flare. Any time I ate, my hr would shoot up so high. I was short of breath. These were typical symptoms I’ve dealt with for a long time but they were worse than before. I started treating it as if it was MCAS because everyone says POTS & MCAS go together. I wasn’t getting better. My HR was getting higher and higher. My normal amount of metoprolol wasn’t controlling my hr. I couldn’t eat but a few bites of food. Eventually I was tested for H Pylori. It’s a stomach bacteria that can GREATLY affect the autonomic nervous system through the stomach.

Since day 1 of starting the antibiotics… POTS symptoms disappeared.

I’m almost 2 months out from antibiotics and my hr is the most stable it’s been in over 10 years.

Please, if you have any symptoms ESPECIALLY revolved around eating/drinking.. do not assume it’s “just pots”. Get tested for H Pylori!

My treatment was High Dose Dual Thearpy with Amoxicillin & Voquezna. 3000mg of Amoxicillin daily for 14 days. Pylera is another common treatment but one of the medications has a black box warning for neurological issues so I refused to take that one.

I always heard the statistics on the percentage of men who will leave their wives once they become ill or develop some sort of medical issue, and I never thought that would be my husband. We've been together for 6 years. He's in the military, I've stayed loyal, supportive and by his side through all of it. I've followed him 1500 miles across the country and dropped everything to support him. I developed POTS in September of 2023. He seemed to be supportive in the beginning. He was super helpful and empathetic, hugging me and bringing me water when I was struggling. It seems sudden, though there were some signs, but he's divorcing me because of it. I even make a point to not talk to him about my struggles and I don't ask for help because it makes me feel like a burden. He repetitively states that I've done nothing wrong, that I do so much for him, kind, caring, I fully take care of the house, pack his bags, do all the laundry, cook his every meal, do thoughtful acts of love daily, and much more. But he says he doesn't want to keep me in his life because his aspirations are growing and doesn't see me fitting in his future with my illness. I've worked so hard to be a great wife. I take marriage as a serious and permanent vow. It hurts so much that, in his eyes, I've been perfect, but he's leaving me because of something I have no control over whatsoever. I feel helpless and worthless. So, now I'm stuck here with this, with no friends or family anywhere near. I guess I'm asking for support? Has anyone gone through similar? And are there any good men out there who won't see me as less because of my POTS?

So I was just officially diagnosed recently with POTS. I have other issues such as EDS, fibro, AuDHD, etc. I finally felt so happy to get this diagnosis because it’s a measurable condition compared to the other “invisible” ones I have. I suspected I have had mild symptoms of pots my whole life but something triggered a flare and I’m extremely sensitive. Like moderate level on a scale and looking for electric wheelchairs for events because I’m not ready to let my chronic illness ruin my lifestyle entirely. I’ve already tried PT for 2+ years as well. I’ve gone through 3years of official diagnosis’s of all my chronic illnesses and coming to terms with them and the idea that my life will not be the same. My SO of 16years told me today after I brought up the idea of needing to purchase an electric wheelchair (again), “yeah because you just want/like to spend money”. I said no I just don’t want this to hold me down. I’ve gone through many ways of expressing how this isn’t something that going away and that idk if it will get better but I need accommodations. He said “yeah well I think you’ve just given up and you don’t care and I hope you know I’m not taking care of you. I have to take care of myself, a job and our kid. I don’t have time for you. If you were bedridden I wouldn’t wipe your butt so you better try harder. “

I’m heartbroken. 💔 😔. To think marriage should be for sickness and health. Old age and struggle. And this is the man I’ve chosen to spend 16 years with to hear after the worst point in my life say something so cruel, and hurtful. He knew immediately he messed up when he said it and I don’t know if I can forgive this —. Our relationship has been tested so much these last 3 years (from having a child and my diagnosis), is this really what I get to look forward to? Do you guys have better support?

Hi, before I write anything else here I'm really really asking you to try and show empathy. I'm a 23F and unfortunately, I live in Israel. I also have POTS and have had it since 11yo. I don't know how many of you here are aware of the current situation in my country, but we are now at direct war with Iran after attempting to destroy their nuclear developments. To me, it means that in the past two days I have been living a literal horror movie. I was woken up from the sirens at 3am and when I realized I had enough time, I drove to my boyfriend's parents house because I was too scared of not being with him. The thing is, in many houses in Israel we have a special room made specifically for situations of missiles being launched at us. Neither mine or my boyfriend's parents houses have this kind of room, we need to run to shelters farther away. In the past two years I would normally just wait out the sirens in staircases and such, but ballistic missiles are far more lethal than the bombs from Gaza or Lebanon or Yemen. The closest shelter at my parents house is 7 floors below mine, and at my boyfriend's house it's a shelter 200m away (218 yards If I'm not mistaken). I had to make this run three times last night, immediately after being woken up from sirens. On my second time I barely made it conscious, I nearly passed out while the missiles exploded over my head. I don't remember a more terrifying experience when I had to run for my life and being so close to get hurt. People died tonight in the city next to mine. I don't know what will happen later on the next days but those who got to the shelter tonight survived. I have to make it to the shelter, but because I have POTS I can barely run, especially after being woken up in the most terrifying way. I don't know if I'm asking for support or advice, or maybe just to get this off my chest to people who might understand my fear. And before I post this, I have to ask again, please be kind. I know that Israel is doing horrible things, but we Israelis don't support it as much as it may seem. I have been actively going to protests whenever I could in the past two years in order to stop the war and stop Netanyahu. I'm asking for kindness because on other forums here I got some terrible comments and messages. Please try to separate your hatred towards my country and your ability to be empathetic to a stranger online who probably thinks the same as you but was too unlucky to be born in the most hated country in the world.

I’ve heard from POTS sufferers that uninformed primary care physicians (or others) have dismissively advised losing weight to resolve symptoms

I lost 50 pounds this year and POTS only got progressively worse for me as I lost. I had a cardiologist appointment today and he asked me about the weight loss and I said that part of the reason I lost weight was to try and improve my POTS symptoms. That’s when he said clearly: “weight loss is not prescribed for POTS and, in fact, exacerbates it”

He then explained in detail why weight loss could make symptoms worse and I now have to be on some medication to raise blood pressure that I didn’t need before.

I just wanted to make this post as a PSA and validation for the people that are ignored and told that losing weight would be your best option. I’m not dissuading you from any weight loss goals and certainly my anecdote doesn’t override any medical advice you’ve been given but I know I would have appreciated knowing this information a year ago.

You know how medical advice is all "if you have chest pain/shortness of breath you need to go to the doctor immediately" but if you actually did that you'd be at the hospital every other day? Well, mine was a lot worse than usual, so I eventually called my doctor with a "what do I do?" question because just walking slowly on the treadmill was sending my heart rate to 180. My O2 was dropping and I didn't think that was normal, but I wasn't sure. I got lucky and they told me I needed to come in immediately and made me an appointment for 15 minutes out. What I thought was just a POTS flare was a giant blood clot in the lungs that earned me an airlift, emergency surgery, several days in the hospital, and expensive drugs for the next long while that require a hospital visit if I fall down.

I spent the weekend scaring my nurses and setting off all their emergency alarms every time I stood up. They kept having to ask me what was normal for me and I just don't know anymore. How do I go back to my "normal" knowing that what feels like pots can actually be something trying to kill me? They always said POTS doesn't reduce your life expectancy but it just about indirectly killed me. If I didn't finally have a doctor that takes me seriously I could have been sent home with another explanation of "just anxiety" instead of a "we should check for PE just in case." I feel like I just got incredibly "lucky" to not die, but also unlucky because dying was even an option.

So my fiancé (24M) has had pots for about 2 years but now it’s getting so much worse, the last few weeks he has barely been able to eat because all the blood in his body goes to his stomach and he gets like drugged and nodding from it, he also has histamin intolerance/mcas but his worst problem is the pots rn cause he can’t do dishes and he basically faints from showering. He eats a lot of salt and water, he trying to keep his electrolytes good but even when he does it all right he is like a zombie. Bcs of all his problems he basically stopped eating, he just ate small portions of cream cheese or frozen meat (he eats keto bcs of his insulin resistance), he dropped in weight to 54kg yesterday so to gain weight we decided he needs to eat a little carbohydrates to maintain his weight. I’m just screaming for help at this point cause idk what to do.

Also idk if this is a ”vent/rant” post or ”support” or whatever, just give me all the knowledge you got

Hi! I feel like this is an important message to spread and if it even helps one person I will be happy. Disclaimer I am NOT trying to instill fear in anyone! This is manageable if you put in the little bit of effort.

I have had POTS since I was 17–diagnosed at 19. I’ve also had Sjogren’s (an autoimmune disease) diagnosed since 14.

When I first found out I had POTS, my symptoms were much more manageable. I thought that since I was functioning well, there was no reason to worry and treat it—I was so busy with college and my sorority and friends that I didn’t want to bother with it.

Two years later, I slowly felt worse and worse—until I got so depressed and fatigued that I then lost ALL will to work on it and treat it (POTS can be a lot harder to turn around the worse it is and it takes dedication and self discipline, which I couldn’t muster).

Now, after leaving it be for too long—it’s gotten to a debilitating point. Not only that, I have developed MCAS which often comes along with POTS—which is actively ruining my life. I react to every food I eat.

My immunologist described it like this: I left my autoimmune disease + POTS untouched for so long, that now my entire system is “on fire”. He said the longer you leave things like this and the worse you let them get, you can be more likely to develop additional illnesses.

Now, the road to getting myself back to a more manageable state looks MUCH harder. I’m kicking myself so hard for being young and stupid and not being proactive.

That being said—if you are capable and able, PLEASE don’t ignore your body! Even if you can’t afford certain treatment or something—salt and little lifestyle changes can go far. I didn’t bother with any of it. You have symptoms for a reason—it’s asking you for help and attention. I wish someone had shook some sense into me when I was still functioning.

Hi everyone. My boyfriend of almost 4 years broke up with me tonight due to my Pots & other possible issues within the dysautonomia umbrella. He said he cannot handle the emotions of having to help provide me care. I am completely distraught and feel like such a burden. I’ve only been dealing with this all for about a year now, and am still in the thick of trying to get in to see doctors and trying different meds. We live together and I just feel so pathetic having to move back with my parents now. I’m only 24, but this is so hard, especially since I am also going through a flare up right now. Do you guys have any advice or words of encouragement if you’ve been in a similar situation?

Most posts I see on this subreddit are quite sad. In an effort to change this. What are some things you have manage to complete despite POTS? Anything you feel proud about. From, being able to walk your dog to completing a marathon. Thanks for sharing to everyone who posted!

I don’t know what to do. My doctor at the long Covid clinic is basically insinuating he won’t see me anymore if I don’t get compression garments that fit. My measurements don’t fit a single size chart I can find for 30-40mmhg thigh high, pantyhose, or even knee highs. I’ve tried several brands of thigh highs and because my foot is so small, the foot ends up in my ankle even the petite lengths are too long to and end up in my crotch.

I’m a size 6 shoe and only 5’1” and have extremely skinny ankles and huge thighs. (And no, none of my clothes fit).

My ankle is 6.5”. I have not found a single pair not visibly loose in the ankle. He says this is not an acceptable fit.
My calf is 15.5” and every knee high I have has rolled down because my calf is too big.
My thighs are 26”. I can’t even pull up most garments that fit the rest of my body.

I don’t know what to try. I’m beyond frustrated. I will literally buy something custom sized but can’t find any. Please tell me if there’s a place that does custom. My measurements are so far out of the size range for half of these garments that the companies won’t sell them to me (for stuff that needs a prescription).

Not a question you should ask on the internet, I know, but I'm only 20 so my brain keeps telling me I'm "too young to be disabled" and I need to assure myself that it's okay and I'm not just pretending

I feel lightheaded basically all the time. It doesn’t matter if I’m sitting, standing, laying. Obviously it’s worse when standing, but the best way I can describe it is like a floating, faint, disconnected feeling in my head. Sometimes it even feels like I could pass out, but I never actually have, even though I think I’ve gotten super close a handful of times.

Anyway, it’s really hard to get comfortable because the feeling never fully goes away.

I’m already doing the typical things:

drinking electrolytes, increasing sodium, wearing compression socks, taking my prescribed meds, using a fan because I feel worse when I’m warm, trying (and failing) to distract myself.

But the feeling is still mostly constant.

I’m honestly just desperate for any little things that have helped people, even if they seem random or weird. Genuinely anything!!!

I hate this medication so much. I’m glad it’s out there because I’m sure it’s helped so many others, but it is NOT helping me. I’ve been on it for a while now, but in the time I’ve been on it I have gained a significant amount of weight.. for reference when I started taking it I was Extremely active and a healthy weight, but this year I keep gaining weight and no matter what I do, I can’t lose the pounds… after about a month I lost 2 pounds for about a week and then gained three…

I’m so sick of it. Not to mention it’s been giving me terrible headaches. Has anyone else gone through this before??? I just feel awful.

EDIT: My Doctor switched me to metoprolol. Wish me luck guys.

I've been reading through this Reddit group, and it seems to be mostly women who are experiencing POTS. I am a middle-aged male who was having heart palpitations and chest pains. So the first thing, of course, was to rule out cardiac issues. I found out my heart is in great shape. But my symptoms have not changed. I didn't get tipped off that it could even be POTS until a cardiologist said my symptoms were not linking up with a heart issue. I got a health band and noticed my heart rate would jump from about 70 to 120 when I stood up and got dizzy. I have all the symptoms of POTS, but doctors don't take it seriously because I am an in-shape middle-aged male.

Does anybody know of any other men who have POTS? I've done my research, and it is rarer, but there should be men out there. Comment and let me know. What's your story? How did you get a doctor to take it seriously? I'm looking for a tilt test, since that is the standard test I hear about. What if they schedule a test on a day that I am feeling okay and it doesn't show?

If your POTS developed after an injury, COVID, or a prolonged period of inactivity, give this approach a chance!

I will keep my story short, but just to give you some background:

My first symptoms started in December 2025 after spending two months mostly bedridden due to a back injury. Of course, for the first five months nobody even suspected POTS, and during that time I underwent a complete neurological evaluation.

Two months after the neurological assessment, I was referred to a psychiatrist and prescribed Cipralex (escitalopram). After only 10 days, my symptoms became 10 times worse. I stopped taking the antidepressant, but the symptoms remained at their maximum intensity. I was unable to function normally, could stay on my feet for only about 10 minutes at a time, and felt absolutely terrible. These were some of my measurements from a typical day:

Date: Wednesday, May 13, 2026

1. Morning Measurement – 10:30 AM
Lying down (after 10 min): 132/72, heart rate 61 bpm
Standing after 1 min: 121/89, heart rate 82 bpm (+21)
Standing after 3 min: 121/85, heart rate 85 bpm (+24)
Standing after 5 min: 122/87, heart rate 84 bpm (+23)

2. Afternoon Measurement – 4:20 PM
Lying down: 135/67, heart rate 66 bpm
Standing after 1 min: 140/86, heart rate 106 bpm (+40)
Standing after 3 min: 126/81, heart rate 98 bpm (+32)
Standing after 5 min: 126/84, heart rate 103 bpm (+37)

3. Evening Measurement – 10:00 PM
Lying down (after 10 min): 130/69, heart rate 69 bpm
Standing after 1 min: 123/85, heart rate 140 bpm (+71)
Standing after 3 min: 119/89, heart rate 128 bpm (+59)
Standing after 5 min: 109/84, heart rate 125 bpm (+56)

On May 29th, I had a tilt table test at 9:00 AM. (It’s important to note that even though I usually feel awful when I first wake up, my heart rate and blood pressure readings are actually at their best in the morning compared to the rest of the day, when my heart rate difference can reach +30 to +35 bpm.)

I prepared for the tilt table test for several days beforehand—drinking plenty of water, sleeping well, etc. During the test, my heart rate increase was 29 bpm, so I did not receive an official diagnosis because the diagnostic threshold is 30+ bpm.

My approach that is moving things in a positive direction:
We all know that most of our time is spent lying down, and that standing for any length of time completely exhausts us, pushing us deeper into the hole and reinforcing the vicious cycle. This obviously doesn’t help us recover.

The solution, in my opinion, is to become active again—but without doing anything in a standing position, or even a seated position (at least at the beginning).

These are the exercises I’ve been doing, and I’m now more than 50% better compared to where I was six months ago:

1. Cycling while lying down
   This is only possible with a stationary bike.
   The important thing is that you can reach the pedals while lying down and pedal from that position. Most stationary bikes allow this.
   I started with just 10 minutes per day because I didn’t want to overdo it. It was important for me to see how I’d feel the next day and avoid triggering a flare-up.
   Gradually increase the duration. I’m currently doing 10 km per day, which takes me about 28–32 minutes.
   No pressure and no specific pace.

2. Lying leg press / squat simulation
   Lie on your back.
   Take a resistance band and attach it to your foot.
   Hold the other end of the band at chest level.
   Push your leg downward, away from your body, as if performing a leg press.
   3–4 sets of 15–20 repetitions. Adjust according to your own tolerance.

3. Calf exercises
   While lying down, attach the resistance band closer to your toes.
   Extend your leg and push against the band.
   It’s basically a simulation of standing calf raises.

4. Hamstrings
   Lie on the floor and place a towel or cloth under your heels.
   Pull your heels toward your glutes while simultaneously lifting your hips off the floor.
   An easier alternative is to anchor a resistance band about 30–40 cm above the floor, lie face down, attach the band to your ankle, and pull your heel toward your glutes.

5. Glute bridge
   Perform glute bridges on the floor.
   You can find demonstrations on YouTube.
   Gradually add resistance if possible. If you don’t have weights, use whatever heavy object you can find at home.

This has been my routine for the last three weeks, and the improvement has been significant.
The goal is to avoid being upright during exercise so that gravity doesn’t continuously pull blood into the legs. Don’t overdo it, and listen to your body.
Give this approach a chance and see whether it helps you improve.

One more tip for making mornings easier:
Before getting out of bed, prepare 2 grams of salt dissolved in about 100 ml of water. Drink it in one go, then immediately drink another 300–400 ml of water. After about 10 minutes, you can get up. I take 10 mg propanol daily ( in the morning)

I’ve shortened the story as much as possible so I don’t bore you with too many details. Feel free to ask if you’re interested in anything else.

Is anyone else Pregnant or has been pregnant with POTS??? I know pregnancy can be difficult for anyone but I just feel absolutely useless. My husband has has to take over all of the chores, and he now does all of the cooking. We used to split everything evenly.
Im so dizzy, nauseas and exhausted I can’t get off the couch without flaring up even worse. Does/ did anyone else feel this way during pregnancy?

I’m scared, back in February my partner was driving me to my moms house and we saw a man yelling at a woman in the middle of the street. I called 911 cause I wasn’t sure if she was safe and we kept driving. I just got a subpoena to testify as a witness. I have been completely housebound for the last 4ish months, with the exception of being in the hospital. I’m not even able to walk my dog. The idea of having to be in a courthouse for who knows how long, having to be upright in my wheelchair is terrifying. I called and asked if there’s any way I could testify via video call and they said they’ll see what they can do and get back to me but it sounds like that’s not a likely option. I’m just scared and don’t know what to do even though I don’t really have any choices

obviously masking up is important, washing hands, taking vitamin D, getting proper sleep and rest, hydrating, etc but any other tips?

my mom is an elementary school nurse😟 if a kid gets sick or covid, she is bound to get sick and i really don’t want to catch anything from her. My dad and sister also work at a restaurant and are always in contact with random coworkers and customers. I feel unsafe and worried in my own home at the moment

So I asked my doctor if I could try Prozac to try and help with the adrenaline dumps. I’ve been feeling a lot of pressure from certain people in my life to get that stuff sorted. Historically I have never done well with antidepressants. Side effects have always been too much for me to push through. Anyway my doctor said he likes Prozac as it’s usually well tolerated, but given my history he would start me on 10mg & taper up after a couple weeks.

Anyway, today was my second dose and I feel awful. I’m super agitated. Really restless and swap from being burning mad to crying. I have no tolerance for noises or people or anything. I just want to be left alone and the smallest things are setting me off. I’m also extremely tired.

I read a lot about how this is “normal” for the first few weeks, but I think if I feel like this after 2 doses I am done for lol I don’t think I will continue as I cannot see myself getting better.

Is this something anyone here has dealt with? I won’t try other SSRI’s or SNRI’s after this, as I’ve reacted badly. So it’s this or nothing (most likely nothing) zero clue how to handle the anxiety and adrenaline dumps moving forward :(

Hi everyone, so as the title says, I just got fired. I've had this job since December 2025. I was a packer for a veterans mail-order pharmacy. The job required me to stand continuously for 9 hours which I have found increasingly unbearable due to POTS. I've had to go home early a lot because after 2-ish hours of standing, I get lightheaded, dizzy, heart rate skyrockets, blood pressure drops, and more. I have been trying to get accommodations for a stool/chair but HR and the VA denied me. They denied all of my accommodations. They sent me an email and said "we cannot continue your employment at this time, so we are encouraging you to resign your position". I am in Arizona, USA and from my understanding, this is an at-will state. Meaning they can fire you for whatever reason. I'm not sure what I should do next. I'm feeling scared as I will have to drain my savings to pay my bills and that can only last a few months before it runs out. I also now have no insurance which means I can't continue to see doctors or try to get meds for the POTS. I guess I'll just have to try to find another job. I've thought about disability but my boyfriend doesn't want me to do it. I also cant afford to wait 2-3 years for the whole process to take place all while not working and not receiving any income. Does anyone have any advice? Any help or support would be appreciated 🖤

I’m AuDHD (Autistic & ADHD) which makes me take things people say hyper literally. Because of this, I only recently started realizing that when people say “Everyone gets tired.”, “Everyone has aches & pains.”, “Everyone hates waiting in line.”, “Everyone gets light headed when they stand up too fast.”, etc, etc, etc, they don’t actually mean the same thing that I mean when I say that I’m tired, in pain, sore, lightheaded, etc.

When I first started looking into POTs, I was genuinely confused because most of the symptoms are things I’ve heard many (MANY) people complain about. My doctor took the time to breakdown what each symptom “actually means” & compared it to how “normal” people experience life. That was mind blowing, validating, & depressing all at once. It was validating to learn that I’m not just handling life worse than other people, but also … disorienting.

My doctor & I realized that my perception of “normal” is nowhere close to what is actually normal/average & should not be relied on. This is all I’ve ever known. My body has always felt this way so I don’t know how to compare against “normal”.

My doctor & therapist have been super supportive through the diagnostic process, but it has felt very isolating. My friends are great, but I don’t even know how to begin to explain this to them. On top of POTs, we’re also strongly suspecting EDS and/or some other type of connective tissue disorder.

I’d love to hear if anyone else has experienced something similar & how they dealt with it.

P.S. I’ve been lurking in this group & am so appreciative of everyone who has shared their tips for how to handle POTs. You guys are awesome. ❤️

Update, I made a POTS support group! Click my profile to join the link!!!! If it doesn’t work dm me your username

I see you and I’m sorry. I’m sorry you no longer trust yourself, I’m sorry you got lied too. I’m sorry you feel/felt belittled. I’m sorry people think you’re over exaggerating. I’m sorry you can’t do what you once could. I’m sorry you look fine but feel awful. I’m sorry if you now doubt every feeling you have. You’re valid. This is real. It’s okay to look okay but not be okay. It’s ok to not have symptoms but feel bad. It’s okay to need breaks. You’re NOT a burden. It’s okay if you’re doing everything right but still can’t function. It’s okay. This illness especially is very good at making us feel crazy. Making us feel like we’re delusional almost. It’s just a blind illness. It’s so hard to learn ourself. It’s okay to fully trust yourself body and if your body says no then don’t do it. It’s okay to go to the ER when you have a bad gut feeling even if it’s just a flare. It’s always better to be safe. It’s okay to constantly seek reassurance from testing if you have doubts. It’s okay to ask questions, it’s okay to not fully understand it. You’re absolutely valid. I’m telling you, IT IS OK. You’re VALID. Your pain is valid, that uneasy anxiety is real. Please be kind to yourself because lord knows this shit will drive us over the edge. It’s okay to need extra help. It’s ok to carry fans, Ice, salt, it’s okay to rest. It’s okay. It’s not your fault. If you need the extra sleep that’s okay. If you need the extra stability ITS OK. I’m so sorry you have to go through this. I’m sorry for us, I’m sorry for our mental health. My messages are open 24:7 if you just need some support. You’re loved and you matter. And god damnit you’re NOT a burden!

I’ve been to the ER for POTS more than once. I’ve told cardiologists, OBs, my PCP, evvvverrrrbody about my heavy periods. All I got as far as advice….more salt, more water, compression. Side note- I also have massive histamine intolerance- HIT diagnosed (and I think mast cell issues which is not acknowledged) and hEDS diagnosed. Here’s what every single person left out- glucose is needed to increase blood volume which in turn helps with hydration. So it’s water, glucose THEN salt!! So I was basically killing myself drinking sea water because I was being gaslit and not balancing with enough fruit. Just the week before I was told by a cardiologist (who was only my cardiologist until the end of my first visit) my symptoms were all mental. An IV and some mango and I was a new person. But it was mental. Um ok. ER stats: My electrolytes: all good. Dehydration: bad. Glucose: low.
Anyway- maybe this is obvious to most people but it was never mentioned to me. When I told him too much salt made me feel worse he said I was making it up. Well look who knew their body better than you, sir.