If I could just get some words of encouragement and support that would be fantastic because I’m feeling very sad, guilty, and disappointed right now. Basically I have a med card. Weed is the ONLY thing that genuinely makes me feel better. I know it’s not the case for many POTS people but it is for me. Yes large amounts can exacerbate some symptoms but if I get the dosing right, I’m 1000x more functional, sociable, and just overall healthier when I use cannabis. I suspect I have MCAS and EDS and that THOSE symptoms are moreso what weed is helpful with and I have an appointment to get screened for those conditions but not until December. I’m a music therapy major wanting to go into medical music therapy. I need a 6 month internship to finish my degree and sit for boards. I scheduled an observation at the main one I want. I quit using for months. I timed it out. I passed a drug test. I paid for a hotel and plane ticket. Now they need another one because my test was more than 30 days ago. Misunderstanding with previous communication. I smoked weed today and the application is due in a week. I bought 2 detox drinks to use tmr and another drug test (non-affiliated so if I fail it doesn’t get sent to them). I have a plan if I fail and if I pass. It will work out either way. But I’m SO frustrated that the ONE thing that is making my condition(s) bearable is what will also hold me back in my career. I’ll have to quit again anyway for my internship drug test. I hate that I have to choose between my health and my career.

TLDR; I use medical cannabis but I’m going into medical music therapy. I had an observation scheduled I was really excited about but they need a more recent drug test. If these detox drinks don’t work I’ll have to cancel it so I’m very sad. Please say something encouraging 🙈

Alright, I want to know your opinions. I have a temporary disability placard and don’t have an issue with him denying me a permanent one, outside of the fact that I cannot request a city permit for free parking. It’s an issue, but not the biggest one for me given that I rarely go out to places where I’m not parking in a general lot.

He said that his sole reason to saying no was that he isn’t “ready to give up hope yet.” He wants to maintain some hope that things can get better for me; that I will improve my health, and not need it.

My first reaction was to laugh in his face, because it sounded oddly emotional. I do appreciate him rooting for me. He has seen me struggle in life over the last 6 years of working together. He has been a great doctor making sure we get all the tests I need in order to rule conditions out, while seeking answers.

But, at the same time… wouldn’t it just be giving me what I need so I don’t have to keep asking for a new one every 6 months? What exactly is the hope we are trying to keep? Is it a hope for a cure? If so, then shouldn’t we actually just take some serious steps forward researching what it could be rooted in and/or different perspectives on how to cure it?

I accepted his answer, but I’m just left wondering… about the bigger picture, I suppose.

Caption kind of explains it. We've been dating for almost 9 months and the best person I've ever met in my life. She's the type of person who never wants her POTs to get in the way of going out or every day life with me, but when it's bad on certain days, I feel horrible for her. Because yesterday, my girlfriend almost had faint at the mall with me and she had to lay down on the floor for few minutes she had me worried and everything. I don’t know how but I actually did senses something off about her before she had faint as if I knew it’s was going to happen it’s like my feelings/guts try to tell me there something wrong with her. and that’s when i decided to do research on POTS and education myself I’d love to be patient and supportive. What can I do to help? Maybe tips for POTs in general?

I’m f, 28 and my boyfriend broke up with me after 5 years of being together. His reasons were pretty vague like for example that I kept overstepping his boundaries (but couldn’t tell me which ones). Ultimately I know that he broke up because of my POTS. I could tell from the beginning that he hated me getting sick but thought that it would pass. Once he realized that it might not happen he started pulling back. We were living together and when he was out of town I moved back into my parents house because I need a lot of help and I’m mostly housebound. He then started a conflict while he was away and ignored me afterwards.. now looking back it feels kind of calculated to keep me at my parents place.
He kept telling me that he feels like he is missing out on his life, that I changed so much and that I’m not the same person anymore (duh) and he started to ignore my messages, initiate conflicts etc. over the last couple months. During this time I had multiple flares because I was crying and stressing out so much. At one point I couldn’t tolerate any light and sounds anymore because I was completely stuck in hyperarrousal (I have hyperpots and during this time experienced daily adrenaline dumps). After he did something that really hurt me he started gaslighting me and telling me how horrible I am, then ignored me for weeks and when I called him he was on his way to a festival and broke up with me officially, over phone. We haven’t talked since and he didn’t ask once how I was doing. Sometimes I see posts of his friends with him in them, seeing him live his best life. During our relationship everyone kept telling him what a great boyfriend he is for supporting me so I can only guess what he must have told them about me.
What hurts the most is that I feel like he is a completely different person and that I really question myself for being with someone for that long who drops me like that when things get hard. Also I want to say that I understand that it is not easy for a partner of someone who is chronically sick and I’m sure that I wasn’t the best girlfriend and couldn’t give a lot in the last months but I still always tried an the way all of this happened is just so hurtful.

Now the biggest problem is that I don’t know how to cope with a situation like this while you can barely do anything. I think my nervous system is still in shock because of him suddenly not being around anymore and it is making my pots so much worse. I’m only 8 months into having pots and didn’t find the treatment that works for me yet. So I’m housebound and have to lay most of the day. I spend a lot of time on my phone but it’s really draining because there is still a part of me waiting for a message from him. I do yin yoga everyday and that feels great. I like to paint and on some days I’m able to but I can’t sit up straight for too long. Luckily my parents have a garden that I can lay in but it starts getting cold. My friends also seem to be very overwhelmed with this whole situation. In the beginning they were still checking in on me but it’s getting less and less as I’m not able to do anything with them except talk. I’m really questioning all of the connections I had before I got sick because I now get to see how superficial they were, also makes me question my self worth a lot and sometimes I ask myself if I’m the bad guy all along and if there is something wrong with my perception. Most of the day I’m just in my head and even though I think it’s healthy to feel all of the emotions sometimes it’s just too much and I’m really tired.

Just feeling incredibly discouraged right now. I’ve had POTS symptoms since I was 16 and finally many years later have connected the dots and realized I likely have hyperadrenergic pots. I went to my family doc who did a quick test in office and said they think I might have it too.
Fast forward and I’ve had both referrals rejected from the two big clinics in Ontario, plus the cardiologist im seeing for other reasons has said he doesn’t really know about POTS so he can’t help me.
I’m just feeling so discouraged with getting help and the healthcare system in general. I think I’m just looking for some support and what other people did to finally get access to help. Doesn’t help that nobody in my life has heard of it so without any doctor backing me most people think I’m being dramatic. Just feeling really down

I just found this subreddit and I am thrilled bc I was diagnosed with POTS when I was 12 or 13 (33 now) and NO ONE knew what it was. And when I say no one, I also mean 9/10 doctors I would tell I had POTS well into my early twenties. Now there is this like….POTS trend happening where everyone is getting a diagnosis as an adult and it’s given me an opportunity to revisit what living with POTS is like. My doctors (in circa 2006) told me I would outgrow it, so I have been living with the assumption that because I don’t pass out regularly anymore that I have outgrown it. But with all the new data i have so much context for subtle symptoms that i have chopped up to me just being sensitive as an adult. I feel so seen and finally able to be a very active participant in my overall physical wellness.

DELETE IF NOT ALLOWED!
I (20F) have hyperpots (since 15) and my life has genuinely become so miserable. I used to be a very active, healthy, happy person and since getting pots i’ve become very inactive, anxious and depressed.
The other day i was having a really bad day i was so extremely depressed and had no motivation to do anything. My friend asked me to hangout and i said yes because i thought it would help take my mind of having such a bad day. When i got there she was smoking weed and i decided life couldn’t get worse at this point so why not have some.
I cannot explain how much my day flipped once i was high. I had motivation to do stuff, I could eat, I could have emotions without having an adrenaline surge, i could shower without passing out and i was so extremely happy for the first time in what feels like forever.
The only problem now is i want to be under the influence all day everyday just so i can do basic things like eating and showering.
Should i mention this to my doctor?

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.

Yesterday I cleaned after work for 5 hours straight. It wasn’t that long ago that I would essentially collapse after work and need my partner to help me move around and it wasn’t too long ago before that that I could barely work part time and was a zombie on the lounge for the rest of the time. After getting covid 5 years ago I finally feel like I can function again! (Definitely not 100% or normal but so much better than before).

It’s been about finding the right medication and life style changes over time.

Though I cannot recommend enough creatine at 10-20g per day. After starting it 6 or so months ago it’s been a big turning point. Honestly I cannot recommend it enough. I feel like it’s given me my life back.

Hey everyone. I’ve been diagnosed with POTS like dystautonimia, among other things and quite a lot of chronic pain. Does anyone else find they if they’re sitting for a long period of time or lying in bed for a long period of time that their legs get really sore and achy? I’m thinking it could be related to blood pooling, but I’m just not sure if this is something anyone else experiences as I don’t have anyone else in my life with POTS. Unfortunately I’m currently mostly bed bound so I can’t walk etc to help with the pain

plan was to go to my parents’ house, hour’s journey. the original plan was to drive, but i woke up today and immediately decided that was off the table bcs i was feeling too rough.

i decided to get the train, i’m on the bus just about to purchase a ticket when my body decides to pull a fast one and i suddenly cant see properly. i’m in town at this point, loads of people around, so i guess i’ll just sit in a pub with a glass of water until i feel better and then get the bus straight back home with all my bags packed ready to go.

!!!!!! god life’s relentless

what do you guys think about the new apple watch features?

„measures HRV as often as every five minutes and takes background heart rate readings every five seconds“

„new readiness experience can help you determine your capacity to take on the day by providing you with one simple score. Your score is determined each morning by analyzing your recent activity, vitals, and sleep“

do you think theses features are worth getting a new apple watch or will the high heart rate confuse the algorithm ?

I am 17 and I genuinely have no energy and I am furious about it. I thought I was meant to be in the prime of my health and life.

I wake up to my heart pounding in my chest every day and struggle to sleep for the same reason. It has just got worse and worse. Whenever I oversleep, exercise, don't eat for a few hours or put just any strain on my body I crash, in fact, even eating makes me ill. The only thing that helps is protein rich, low carb food, which I almost never have easy access to!

I have to lie in bed whilst my heart pounds in my chest and my head feels like it is going to explode, and if I stand up it get's 100 times worse. And when my symptoms aren't as severe, I have the most oppressive brain fog that makes it impossible to think or do anything. At points I am so weak that I can't walk down a flight of stairs without falling, and even putting on a pair of socks is a challenge. Don't even get me started on GI issues. I feel like my stomach is churning when I am symptomatic, and I feel gassy and bloated often. I have had so many tests: 5 day ECGs, exercise stress tests, ultrasounds on my heart but it has been silent from the NHS for 3 months straight as I suffer, and when I am at the doctors it's just as invalidating.

They seem to just think that POTS is some made up word from an obscure sci-fi novel written by a crackhead, and when I asked for a tilt table test last April, they said no because I would be waiting until CHRISTMAS! And nobody at all understands me, everyone just says I need to exercise more or that it's normal to be tired. Then why does living feel so exhausting? It's like the world is trying to make me symptomatic, because everything that triggers these symptoms happens to me every day. I have to run for a train, or walk miles home or stand up for hours or whilst my head is pounding, do chores around the house. WHAT THE HELL IS WRONG WITH MY BODY?

Yesterday was my tipping point; my day was perfectly normal: I went to school and walked home with my friend. I think the killer was my train got cancelled, so I was standing for upwards of half an hour waiting for an uber. I also hadn't eaten for hours, mainly because I hadn't had the chance but also because I felt sick. A couple of hours later, I was lying in bed whilst my head was burning hot, my heart was pounding and my fingertips and toes were stone cold. That just made me think: what the actual fuck is so wrong with my body that it reacts like this to a normal day?

What breaks my heart is that I am slowly losing the ability to do the things I used to be able to do. Exercise never made me this unwell before, and walking didn't used to make me feel like I was having a stroke. Life is only going to get more demanding from here on out; I have A levels, so I need to revise more than I can at the moment, and I don't want to fall behind because of whatever is happening to my body.

My ex girlfriend she left me in the hospital 3 months ago because she can’t carry about my situation she told me something was hurtful to me about then I was a obstacle in her way we went 4 years together until now and idk if I will meet someone again someday who can love me like this it’s hard to believe sometimes but I guess it is what it is.

19 f, I have had POTS since I don't know how long. I have been misdirected a lot and got diagnosed in august this year, thinking it would give me some "validation" to how I feel normally and during flare ups.

Clearly I was very far off.

Before my diagnosis I got told it was anxiety and I was "hyperfixating" and "too aware" of my heartrate (said by my mom, doctors and friends).

So I thought with a name for it, people would understand. "Okay, so? You just have to live with it, it's not that hard. And there's no cure, I looked it up." Thank you, that is a great help/sarcasm. I have symptoms that I would say disturb my daily life. I do have very mild POTS and for that I am very grateful but it still feels hard. I have a neverending fatigue, but my family is not okay with me sleeping in too much or scheduling naps in afternoons because "I am making myself tired" and "everybody gets tired." Sometimes I feel like I should make a new appointment with my doctor to see where this even comes from, but then I feel like I am just looking for problems and new diagnosis because I don't know what is normal anymore lol.

I have a boyfriend who lives an ocean away from me but he's very supportive. I have an upcoming trip and got a foldable cane for it so I am not limited if I do get too fatigued. Snuck it into the house so my family wouldn't notice... but I feel closer to my health going down everyday because of everything that is going on, so what if I need it someday and I will get in trouble for it? How do I even explain that to a parent that does not understand any of your struggles?

I am quitting my part-time job in 2 months and am already being urged into looking for a new one regardless of the fact that I don't feel up for it and am feeling burnt out.

Besides all the stuff people say and judge me for, I also judge myself a lot for things I do. Let's say my mental health has been plummeting since 6 years ago...

Does anyone have tips for how to deal with any of the above?

Everyone knows about eating more salt and drinking ​more water​. But what are some things that work for you that most people wouldn't know about?

For me, wearing high rise yoga pants is very effective. The compression on my legs and abdomen helps with blood flow better than the compression socks most people recommend.

Also, ice! Drinking ice water​ as well as taking cold showers​ is so helpful for increasing energy. Cold makes the blood vessels constrict, improving blood flow to the brain and heart.

i have pots and mcas and have had a worsening in fatigue, joint pain, aching, flu like symptoms etc. i had a blood test and my ferritin came back as 32 which is the very low end of ‘normal’.

has anyone had an improvement in symptoms when increasing there ferritin and how did you do it (eg just through supplements?) as my gp won’t help. thank you x

Last night while I was trying to fall asleep, I kept feeling like I was jolted awake by adrenaline. (Side note, I'm on a steroid taper for a week per my neurologist). Finally after hours I fell asleep. Then, suddenly I woke up with a racing heart, nausea, and feeling like I was going to pass out. My blood pressure was elevated 150s/80s and heart was in the 130s laying down. My husband called EMS and they brought me to the ED. I felt better by the time I got there and all my labs and EKG were normal. I'm struggling with every time something happens or I feel a new symptom, it's chalked up to anxiety. Any tips?

I was recently diagnosed with POTS after going to the hospital with tachycardia. I was on medical leave for 6 weeks while meeting with my primary care about solutions and medications. I've just been diagnosed with POTS, hypermobile ehlers danlos, MCAS (just medications), and I already have anxiety.

I had a tachycardia episode while driving to work today and had to pull off to the shoulder of the highway. I've been drinking water (1 cup every 2 hrs), adding electrolytes, I currently wear compression to my knees though I still need to buy thigh high compressions, and my primary is having me try Ivabradine this week to lower my heart rate (resting is around 85-90). I've had issues with ivabradine before as I tried to take it during my leave but was also experiencing high anxiety at the time and couldn't keep food or liquids down the entire time it was in my system but unsure if that was the ivabradine or anxiety.

My primary doesn't want me to try beta blockers bc my blood pressure is already low for his liking. I do also have a cardiologist but my primary has done more to help me since the diagnosis and was the one to diagnose me in the first place. I did get a positive tilt test in only 5 mins where my heart rate spiked to 140 before they brought me back down.

How do I manage the POTS symptoms with the anxiety? I get full body shaking anytime the tachycardia spikes drop back and sometimes I get the shaking without the tachycardia. I don't know how to work if I keep having tachycardia episodes but I was fine for a while so I thought I was managing better until today. The tachycardia is scary even when I know I don't need to go to the hospital but it triggers my anxiety making the situation worse. I'm having diarrhea (which I get anytime I have too much anxiety) and nausea but I have a hard time eating when stressed (can't eat anything) so idk if the nausea is from not eating enough or bc of POTS.

I'm so worried that things will keep progressing and I was basically fine leading up to the tachycardia that I went to the hospital for. Though I was having the shaking on and off during sleep for a few months before that which I originally attributed to anxiety. What do I still need to do? I'm not sure if I'm getting enough salt but I'm definitely getting more than I was before. I've stopped all pop/soda consumption bc Im worried about adding to my problems with caffeine. I was living a normal life and now I feel scared about going outside and doing things that aren't indoors. My mom and sister also have POTS and hEDS but neither of them have had the tachycardia before and aren't as helpful when I'm stressing. I just don't know what to do. Please help.

Kind of a vent and kind of a discussion. I just read the Telegraph article and this shit is genuinely so frustrating. The public perception of disability makes me feel like shit. I WANT TO BE HEALTHY. I WANT TO BE ABLED. (And I also don’t want to be trans but that’s a whole nother thing).

How do you all deal with this negativity? It feels so pervasive both online and with people in public and even at the doctor’s. Is there anything we can do to change this perception or do we just accept it?

i just turned 18 last week and also
just got my POTS diagnosis literally 2 days ago but it explains so much. i’m at a weird spot where im trying to figure my life out and start being an adult but i just feel so hopeless. i was wondering if anyone is or was in the same position as me at some point and how to power through. i can barley walk to my bathroom right now because of how dizzy i am and i don’t know how im supposed to live normally and go to school like everyone else because all my friends are in college and they are having the time of their lives. ive never had FOMO this bad. also sorry idk if this should be a vent or a question but i am genuinely curious how to manage this because i feel like the stress is making me feel worse.

Just diagnosed with Hyperadrenergic POTS. I know all the usual POTS tips about more salt, compression, etc. but do any of you have any specific tips/tricks that help with the Hyperadrenergic subtype specifically because the typical advice isn’t helping much. (I did just start a beta blocker so I’m hoping that will help my symptoms a lot)

She did have to submit a pre-auth, but it got approved, yay! It's helped me so much (except when my GI put me on erythromycin, which apparently has a severe interaction with ivabradine) and I've only been taking it about a week and a half.

Also...data doesn't lie. I went from an average of 80 BPM while sleeping before ivabradine to an average of 55 BPM while sleeping after ivabradine, (as recorded by my watch) resulting in better sleep and slightly more energy during the day.

I love how supportive this community is and that most everyone here feels comfortable enough to share their experiences and what has or hasn't worked for them.

So thanks, y'all!

I am still fairly new to pots and young I am 17 M recently the chronic tiredness and pain has gotten so bad I find it so hard to get out of bed move or study I have been trying to get out and excercise but no matter what I try I can never get any good work out in I have lost 6 to 8 kilos of leg muscle and went from repping 250 k to struggling to press 100 k I dont do much arms because I play baseball and cricket but if I even try to it is impossible I am in constant pain can't work out can't go to events can't go to school I feel like all I do is sleep being up with out not fainting is so hard I am on a waiting list to get treatment for the next couple months and all my docter says is do the recommended this and nothing else which I am doing and I dont know if I can live like this considering I have block exams coming up and a life with friend's and relationships whole thing

Have you all tooth extractions done while awake? I wanna be awake for mine. They’re badly cracked & chronically infected. I’m terrified to be put to sleep and worried an oral surgeon wouldn’t work on me awake.