I can't get a doctor to take me seriously. I have already been diagnosed with long qt syndrome, and my doctors write off anything I experience as long qt or anxiety, but after a lot of research I have a lot of pots symptoms. I'm constantly dizzy, lightheaded, feel my heart race, chest pain, out of breath, have brain fog, gastrointestinal distress, discolored feet, cold extremities (hands and feet), sleep issues, and more. When I mentioned it once to my cardiologist he just had me sit down and stand up once, and then told me I didn't have it. I'm already on beta blockers, and was basically just told "well you don't have it, and even if you do you're already on beta blockers". I feel like the "testing" wasn't thorough, and I wasn't taken seriously at all. It's so frustrating.

These symptoms genuinely interfere with my every day life, and nobody takes me seriously, they just imply I'm lazy or in my own head. But I've felt this way as long as I can remember, I just thought it was normal. My long qt shouldn't be causing all of these symptoms, especially since I am on beta blockers. Even if I don't have pots, I just want to be taken seriously at an appointment without having my mom come with me.

I’m sitting in my car while my husband goes into our Airbnb. We are in St. Augustine with my family to celebrate my fortieth birthday a month late. October I was having full syncope episodes. As we saying prayers in the Greek Orthodox Shrine the chest pain started. Then hits a full syncope episode. I just wanted to feel normal.

What triggers do you have? I have been unable to identify anything specific except that my symptoms are worse when I have to force myself to get up at 5am for work in the morning (as opposed to my days off when I get up whenever I want). I really want to understand why sometimes I have a good day and sometimes my HR is at 140 when I just stand up. Thank you

Got my tilt table test pending but my feet are constantly freezing and sweatyz. My hands a lot too. Is this just me. Any help

Why is temperature regulation so difficult??

I just have to laugh at this point. I'm wearing sweatpants and a cropped hoodie. I'm also under a blanket. I'm sweating. But I'm also shivering. I'm so cold AND so warm at the same time. Why. Why is my stomach (exposed from the crop top but covered by the blanket) sweating? But my arms, (fully covered by blanket and hoodie) are freezing? Nothing makes sense. I'm freezing and hot but not sick. What a ride.

Sincerely,

The Icy Hot of People

I’m 61 and having a long awaited tonsillectomy in about two weeks and I’m wondering if anybody has any tips for me pre-or post surgery? The only previous surgeries I’ve ever had under anesthesia are carpal tunnel. All of the others I’ve asked to do under locals. I admit it, I saw the movie Coma at a very formative age 🤣 Fortunately the doctor says this is only about 15 minutes under so I’m hoping that equates to minimal POTS impact 🤞🏻. My pots is pretty well-controlled atm, I mostly have the usual HR issues/hot flashes when standing. Only meds are thyroid, metformin and low dose naltrexone which I will stop ahead of time so it won’t interfere with the much desired painkillers. I can’t eat dairy, gluten or sugar due to allergies/intolerance and blood glucose so things like commercial ice cream are out and I haven’t found a low sugar plant based one.

Here’s my plan: extra hydration in the days leading up to the surgery. Post procedure: cold sugar free Liquid IV, ice collar, Owyn pea protein shakes and Cocoyo yogurts. If anybody knows of a low-carb plant based ice cream recipe, please share 😋

this might be a dumb question but every time i have to run errands and it’s warm out it takes everything out of my by the time i’m home. 30 second walk from my house to my car? whew it’s warm today. park the air conditioned car walk maybe 45 seconds into the library? need to sit down for a minute before i browse. same thing going back to the car and waiting for it to cool down. get to the store and walk a minute at most to the sweet sweet air conditioning? literally don’t want to get my groceries anymore.

I was diagnosed with POTS and Orthostatic Hypotension a few days ago. I was told I won’t grow it out until after menopause as I just started having horrible symptoms a few months ago. The doctor said that all I can do to manage my symptoms are salt intake, compression, and exercise. She said I will never be 100% again. It is really discouraging as I can barely even walk around my university campus without feeling awful. I am not able to go on medication because many of them lower your blood pressure and I already have issues with that. I tried a medication to raise my blood pressure not knowing I had POTS at the time and it made my heart flutter and I was unable to sleep well for a few days. I have a very high tolerance to feeling unwell because I have had chronic migraines my whole life so I am not sure what the severity of my POTS is. I have been to the ER a few times because I couldn’t get my HR down for over an hour. I honestly don’t know what to do at this point. I am starting some cardio workouts (very low impact ones like walking or biking) but I just don’t feel any better. I am thinking about getting a referral to an autonomic dysfunction specialist but they can take over a year to get into as there are so few in the states. I was also looking into getting a service dog as I think I could handle the task of taking care of an animal. I think it would take away the anxiety that I might just pass out while walking or driving. If anyone has any suggestions please let me know. I am so new to all of this and just want to do what is best for myself.

Our child had a screening for POTS at their primary care Dr. They've been having elevated heart rate and dizziness when standing up and after exercise. The screening came back negative and more exercise (although they are developing an aversion based on these symptoms), salt, and hydration were recommended.

I would like to share stats with the Dr after recording their heart rate at home and with an appointment. What is the most affordable way to do this? Not sure if this is connected, but they were recently diagnosed with PNES. Thanks in advance.

started 2h ago, as soon as I chnage my position or just move a bit i get dizzy and feel like throwing up, this feeling like throwingup is the entire time but gets worse when moving. I can't lie down because this makes my symptoms extreme. My body is in a panic/adrenaline/uncalm mode. I have some tunnel vision and shakyness. I made myself very salt electrolyte water and ate a few bits. I also wear all my compression

Any help with overcoming this?

edits:

blood sugar is normal at 96mg/dl

extremeties are cold

bp is elevated at 130/85

pulse is surprisingly low at 70-80 when sitting with legs up on my bed

it's really exhausting because I have moderate to severe ME/CFS

legs are warm now but are still twitchy

I've been taking Procoralan (ivabradine) as my cardiologist prescribed ir for me for a week. I've been even more fatigued than usually is this something normal and will it possibly go away eventually? Not other side effects.

Hi,

So I went to the doctor because my Apple watch goes from 70 to 110 upon standing.

My doctor (a young man, very understanding and not dismissive at all) instantly brings up POTS and says my symptoms are text book. (Only on standing, or when I got hot, feeling ill after eating large meals, coat hanger neck pain that goes when I eat salt, and the symptoms associated with standing or heat.) I got sent to a cardiologist, had extensive testing of everything and told my heart was "very healthy."

On the day of my final appointment, I had a young woman as my cardiologist who was SO understanding. She literally said this syndrome mainly impacts young women your age etc. She asked about Apple watch data and mentioned I had done a poor man's tilt test. The facility doesn't have a tilt table test, and she asked how many times my heart rate does this. I said everytime I stand, consistently, and it stays up.

She said if my heart rate is doing this visibly on my Apple watch as I say and everything else being healthy, she diagnosed me with POTS.

Thing is, they did this off my subjective reports of my heart rate and Apple watch. I did the poor man's tilt test perfectly, several times. But I still feel like a bit of a fraud, and like I got diagnosed too "easily."

Does this make sense? Am I being dumb to feel like it could be something else, or that maybe they're wrong, just because they didn't repeat the same test again?

I was very precise about my symptoms and how I feel. My dizziness is very isolated to standing and getting hot.

My family doctor has offered to send me for a tilt table test but it's miles away, I'd lose time from work and to be honest I don't what it would achieve.

What have other people done? Has anyone else had this experience?

I was prepared for an uphill battle and being dismissed. But it's been quite the opposite.

Thank you!

10mg twice a day, so far no effect feels like coffee and still fatigued. My biggest issue is I have left arm pain . It is sometimes neuropathic, sometimes stabbing pain. It can be worsened with exertion, for example carrying a plate of food or picking up a watering can. It has been linked to low K+ but I have been supplimenting that for months. Does anyone share this host of symptoms? Any advice for neuropathic POTs? Currently sittin in a infa-red, ultra-red light with green goggles on because it is supposed to boost mitochondria or something. It hurts to type with my left hand (I'm in college).

I think we can all agree that vacuuming absolutely sucks (pun intended). You have to stand up and drag this heavy ass machine around the entire house while it screams in your ears and puts off So Much Heat.

Unfortunately, my house is covered in carpet and I can't afford to change that. I have a roomba and it does well for dust and light cleaning, but it can't handle anything heavy duty. I have multiple pets and am very clumsy, so my floors are often dirty enough to need more than what the robot can manage.

Christmas is coming and the top thing on my list will be a vacuum I can use without wanting to die.

So, fellow POTS sufferers, can you recommend a good quality vacuum that is good at cleaning but also extremely light? Bonus points if it is also cordless and easy to empty.

Hi there,

I wondered if this was common for POTS people? I've experienced adrenaline surges during POTS flares, where I'd be waking frequently around the same time each night with my heart pounding and feeling weird. This week I experienced something entirely different and I'm a bit baffled what happened!

I've not been having a good week or two in general. High HR, low HRV, nervous system feels jittery and more out of balance than usual. I'm still taking all my meds which have kept me quite stable and improving since August.

Thursday morning I woke about 3.15am but felt okay - but by 3.30am I started with a deep ache in my lower back and stabby abdominal cramping. So I got up and went to the bathroom, by 4am I started feeling too warm and clammy. I'm guessing at this point my BP started dropping.

The pre-syncope started, much more severe than usual (I've never fainted). I quickly got on the bathroom floor and lay down. The sweating started.. oh my goodness. Everywhere was profusely sweating, my hair was soaking! I was in-and-out of consciousness for a short while. The worst part about it all which I could never tell anyone in real life.. whilst out of it on the floor I pooped my pants 😭 mortifying. When I came to I called for my husband to make up some electrolytes and help me. He's wonderful, I'm lucky!

I was an absolute wreck, freezing cold, so lay in bed in my fleece dressing gown and electric blanket on. My muscles started contracting and convulsing, especially arms and legs. I think this happens when my body's in shock.

Of course.. I've felt more awful for the last 3 days. I don't really know what's happening despite having POTS for over 20 years(!), as this was quite new. I'm scared about having another episode. I've not had any infections (usually I'll get really sick when I catch anything) so I don't know what caused it, or how to avoid it happening again!

Does anyone else have this sort of thing happen? Do you have triggers or ways to avoid it? Advice welcome!

So I’ve been on 25mg metoprolol for awhile now and I’ve noticed that I get extreme panic/depressed feeling about an hour after I take it. I only take it a bedtime but has this happened to anyone else? I just feel so horrible after I take it that I don’t know if I should even take it anymore.

Hey all.

I’m losing it because I get a colonoscopy and endoscopy in a couple days. I start prep tomorrow. I’m doing the PEG one and I’ve only heard bad things. I deal with PVCs and PACs and I’m freaking out thinking of the possibility of the prep or the procedure sending me into a flare. Can anyone give me tips or stories that can help me because I’ve already rescheduled this procedure twice. I’m in my 20’s I really don’t know what to expect and the Dr didn’t seem to really care about me having pots other than telling me I’ll have extra fluids during the procedure.

The last few months, a week before my period, I become paralyzed in weakness and feel like i’m drugged/drunk. Is this a POTS thing? It’s definitely not endometriosis bc I don’t have the pain. All my hormones and thyroid are completely fine. If I was outside alone during this week I would get lost.

I’ve had POTS symptoms for 9 months but this has been happening for the last 3-4 months

Besides selecting meds on iWatch is there another method?

Kind of a rant and kind of hoping for advice.

I am not officially diagnosed with pots but I had an orthostatic test that showed my heart rate sustaining itself above the 30bpm criteria.

So.. For the first time I got to try a beta blocker. At first the doctor wanted to try propral but due to my asthma we ended up on bisoprolol instead to lower my heart rate.

Yesterday I took my first dose and suddenly my throat and lungs started to feel "swollen"/tight. I thought okay maybe it's not from the medicine. I took ventoline and felt better but still not normal. I still had to work more to breathe properly and my lungs and throat still felt tight. Later on I checked my blood pressure and it dropped to 106/54.

I noticed my resting hr was lower and when I stood up it was lower than normal but could have been better. After only around 4 hours I started to notice my hr rising back up. Still for the rest of the night my blood pressure stayed low. It still did help my hr a bit but I was feeling off for the rest of the night.

I decided that night to ask a nurse if I should still take the medicine due to it lowering my blood pressure so much. She consulted a doctor and they decided I would half of a tablet in the morning and the other half at night. So I took the pill. Again after around 30minutes/1 hour the same feeling returned to my lungs.

I contacted them again and told them the situation and she said maybe I should just not take the pill anymore and contact the doctor that treats me on monday.

So now.. Taking it for two days I noticed, difficulty breathing, tiredness, and low blood pressure. I haven't checked my blood pressure now since I just got home but I am EXHAUSTED. Also.. The same day I took the first dose I got a veeery light bruise on my thumb, the next day after the second dose it kept getting darker and I got one on my other finger. I'll attach a photo. I have no idea what this could be caused by 🤔

I am still having a bit of difficulty breathing but I think this is going to pass with me not taking bisoprolol anymore.

So.. The thing that stresses me about this... Already when I heard from the consulted doctor he said "it's difficult to prescribe medication because of the patients asthma".. I am already scared of what happens if I react badly to all of the medications.. And by the sounds of it there might not be so many options for me..

Now I'm even more scared of ending up without treatment... As it is I am not able to work and function properly so I REALLY want to get treatment that works...

I have tried home remedies to the best of my abilities. Salt made me feel AWFUL and drinking much water isn't really possible due to my stomach. There are other ones but these are the main ones that failed.

What do I doo... ugh.. I kind of want to ask the doctor "what if no medication works or suits me, what then?" But I don't want her to think I'm intentionally looking for them not to work or something

Ps. I live in Finland so some medications aren't used here unless it's a VERY special case. That means I don't have as many options and even less because of my asthma.

Edit: I forgot to attach the photos! I'll put them in the comments if I remember and when Reddit lets me 😂

I'm telling you guys, beta blockers fucking for real changed my life, because I ain't SHIT without them, This afternoon I didn't take them (My doctor agreed that If I don't have to do anything besides, laying that rest of the day, I can be off them) And I'm tellin ya. I'm tellin ya. THIS SHIT IS SOMETHING WE'RE NOT SUPPOSED TO JUST- ACCEPT. IT ISN'T POSSIBLE! IT ISN'T FUCKING POSSIBLE!

My cold-intolerance seems to get worse every year. I'm almost positive it's linked to my POTS, because it seems to come and go with dysautonomia symptoms. It's early November here in the southern US and I'm already freezing.

Last year, I discovered that rechargeable electric hand-warmers exist so I bought one and now I'm practically stuck to it. I would recommend everyone with cold-intolerance get one.

Do you have any similar items/ product reviews that would be helpful for those of us just trying to survive the winter?

About 2-3 weeks ago, I got the flu shot + Pfizer covid booster. I had the typical side effects for maybe a few days max along with a mini flare, which I expected. I then recovered to my usual baseline, which is consistent with my past experiences with both vaccines.

Suddenly, earlier this week, I got hit with my worst flare up since I got covid in 2022. My main symptoms are increased RHR (about 10-15 BPM from 70s to 80s-90s), bounding pulse/palpitations, orthostatic intolerance, unrelenting dry mouth, lack of appetite, and slightly elevated temperature (98.8-99 F). It was extremely precipitous as well - the day before I felt completely normal, then the next morning I went up the stairs and felt like my heart was going to beat out of my chest.

I tested negative for covid and don't feel "sick" aside from minor congestion. No other tests done yet, but I see my cardiologist soon so I'm still waiting on his take. I'm mostly curious if anyone else has had this experience since I can't think of much that would have triggered this otherwise. I've been dealing with a lot of stress due to work and anxiety recently, but it's been an ongoing issue for several months at this point.

Basically just the title. Got my diagnosis a few weeks ago, but don’t see my cardiologist for a follow-up until January. My PCP is comfortable trying out new meds before my follow-up, so what do y’all take? My BP is on the low end of normal with a baseline high HR & a 40 ish jump when upright.

Always hot and flushed for 8 months. Now I’ve started getting very dizzy often when bending down and getting up. Almost fainting sometimes.

Started checking my heart during these episodes and I’ll just be standing and heart is at 150 lol sweet that’s great

Now my feet have started weird tingling where I feel like someone’s is touching them with a hot needle ever so gentle. Also cool nice life

Does this sound like pots ?? I’ve checked into MCAS but antihistamines do jack shit and I don’t react to anything I’m just 24/7 flushed not in a flare. The dizziness happens in flares though

Thoughts? cardiologist next month but blood pressure is always normal though my fatty arm sometimes struggles with the cuff so who actually knows

Is it safe to take a Covid booster which might induce a fever? Have you had any of the boosters inducing a fever all while you can no longer sweat? How did it go?

This would be my fourth shot, my previous 3 didn’t give me a fever or make me sick but this time around I’ll be taking my booster after I had Covid (which I suspect Long Covid is to blame for my current POTs and dysautonomia symptoms, including no longer being able to sweat), and I’ve heard any boosters you get after a Covid infection has a higher chance of inducing a fever/strong immune response…

I'm currently 4 weeks postpartum and my blood pressure has been low for the last two weeks.

I've never had this problem before and all my doctors keep saying is to drink more fluids and add more sodium.

I am currently drinking SO much fluid, plus electrolyte packages (LMNT) and I don't know how to physically add more than I already am.

Is there an easier way to get BP up? Do sodium pills exist? This is all new to me.

I was diagnosed before my pregnancy and put on metoprolol. It's helped my tachycardia but im still getting the blacking out while standing up and now the low BP. Any advice is welcome 🥲