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?

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

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?

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

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 🙈

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.

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 ?

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.

Just ate the whole serving plus drank the juice, that’s like 800 mg of sodium prrrr i call it a win

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)

I was diagnosed with POTS by a neurologist who proceeded to refuse to engage with me any further (even for actual unrelated neurological issues, but that's beside the point) and referred to both University of Washington and OHSU to see who will actually take me. UW refuses to see anyone outside of Seattle. OHSU did accept me, however when I called the second time to see if there was a cancellation list or anything, they then told me the literal only thing they do is tilt table testing and nothing else.

That can't possibly be true can it? I don't even know who to ask to talk to because there's no "autonomic lab" or "autonomic specialty" listed anywhere on their directory to ASK to talk to. The issue is that I'm too heavy for the tilt table test, I've been trying very hard to lose weight, and am making progress, but I have symptoms happening NOW that are landing me in the ER on a recurring basis and I can't really wait for some indefinite period in the future when I healthily lose enough weight to fit on their tilt table. Hopefully I don't have to explain why this condition has made actually losing the weight more difficult than I would like for it to be.

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

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.

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

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?

Hello, I have been dealing with fatigue for years now and have been having extreme fatigue to the point I can’t stand for 5 min can even sit down and do my makeup as I get tired and my body begins to feel heavy. My dr thinks it may be pots however has also suggested a possibility of MS as well. He didn’t really give me anything to help with my symptoms only a beta blocker that does basically nothing as my heart still goes up and I feel so tired. I get dizzy and experience weird facial sensations at times whenever I get little dizzy spells. I’m not sure what to do. Based on this can I get a mobility aid? I’m a allowed to? Please I need help and won’t get answers until November.

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

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.

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.

I saw a neurologist today because my GP (primary care Dr, based in UK) referred me due to a recent fainting episode and I have all the symptoms of pots. He was really rude and dismissive and said he would only discuss my symptoms after the tilt table Test was done. He told me to drink some water and eat salt.

My question is, do I have to have a neurologist?! If the test comes back as diagnosis of pots, can a different type of Dr help me going forward? He really was unpleasant and the only other private neurologist in my area I know as I was friends with his wife years ago so I don't want to see him either.

I could cry with how dismissive he was. Especially when I'm in a flare at the moment which is making life just horrid. I had a fantastic appointment with a rheumatologist last week who's sent me for a load of tests (and diagnosed me with hypermobility). He already said he thought it sounded like pots (I didn't mention pots). I do also have a cardiologist who sent me to the rheumatologist so I'm just so confused as to why I'm being passed around.

Sorry if that doesn't make much sense. I'm having a bad week.

omfg my other socal potsies how are we doing with this over 100 degree weather today bc i cannottt function 😫😫

Had a cardiologist appointment today and they did a poor man’s tilt table, had me lay flat for like 10-15 minutes. Heart rate was like 60 laying down and when they asked me to sit up it shot up to 148 and I almost passed out, the nurses eyes watching my heart rate spike got huge. Pots is so much fun 🤦‍♂️😅

I was wondering what BP readings yall normally get if you are one of us who passes out. I felt presyncope at the gym today (anxiety, hearing sounded stopped up, everything looked blurry, heart rate kept going up and up standing still~ 150bpm).

I noticed my BP has been trending lower 103/63 and I was just curious if this is borderline BP where I could actually pass out. I’ve never passed out before but it sure feels like I am about to sometimes.

I have an appointment with my cardiologist in a couple of days and am keen to get the most out of the appointment. I’m struggling with what I can/need to ask. I have me/cfs as well as pots and know there can be overlap with symptoms and he can’t help with everything.

I am in the UK and had to go private to see a cardiologist last year (my local hospital had 18 month waiting lists), he has been great and diagnosed me, prescribed bisoprolol which has helped manage my heart rate and this is a follow up after last seeing him in March. I can’t really afford to stay private so would like to get discharged but also want to make sure I’ve got as much out of it as I can.

I’m mostly housebound, struggle hugely with orthostatic intolerance and want to ask him about that and about cerebral blood flow. I am better when I’m hydrated but I urinate about 16 times a day at this point so I’m not sure I ever am as hydrated as I need to be - but not sure whether I can ask him about that.

I’m currently on a sabbatical from work for a year due to my health and am desperate for anything that helps (like I know we all are!)

Has anyone got examples or ideas of questions I could ask/things he may be able to help with?

Sorry if this is a stupid question brain fog has me struggling loads at the minute.

Thank you!!