today:

Me: “I really don’t want to do *my sport* today I’m so tired and in pain”

My mum: “moving helps”

Me: “it really doesn’t for me” ( I have dealt with severe exercise intolerance I get nauseous)

My mum: ”well you have to keep moving“

(I go on 30 minute walks everyday. Well try to but I go on very regular walks which is all my body can tolerate)

Me: “i do move but I’m in a lot of pain today and i know it’s just going to make it worse”

My mum: “you’ll be fine it'll Help“

this is pretty much the conv I had with her today. She also very often invalidates how I’m feeling and it’s so frustrating and exhausting when the person who is supposed to be helping you doesn’t listen (I’m 16). I feel so unheard and helpless.

I can’t explain my symptoms. I can voice how I feel. I’m so lost on what I’m supposed to do. I get ignored and dismissed because I’m young and to her my symptoms have “come out of nowhere where”. When really I’ve been dealing with them for a long time I’ve just only started trying to care for myself and speak up about it. And my symptoms have gotten a lot worse as well.

Any advice from people with a similar issue would be greatly appreciated. thank you.

I took my first ever dose of beta blockers on friday and my resting heart rate was around 50, at lowest 42 when sleeping and i was getting terrible head rushes. I am on a low dose so i didnt take it again after my first dose until i could call my doctor. when i called today i spoke to a nurse who scolded me about “playing with heart medication” and that I cant just stop taking it whenever. She calls me back later after “talking to providers” and tells me to just take my beta blockers whenever i feel it’s safe to do so… obviously im very confused by this.. she genuinely told me to just take them whenever my heart rate isn’t below 60. I told her my resting heart rate has been falling below 60 since my initial dose three days ago and was just like hmm well I guess don’t take it today then. wtf… That can’t be safe to just take beta blockers whenever it “seems safe”. what kind of advice is this???

I've been seeing a wonderful man who is kind, respectful, fun, and takes my health issues very seriously! He always holds my hand and helps me up the stairs, sits on the ground with me anytime I'm near fainting and need to plop down, and is always checking on me throughout the day to make sure I'm not falling over or crashing into walls because of my balance and dizziness issues. He's patient through my ADHD and brain fog. And genuinely makes me feel less terrible about myself for being disabled.

It's insane to me because my ex made me feel like I was an annoyance to be around, a problem that couldn't be solved, and the thing that always ruined a fun day. I was completely depressed and hopeless when I was with him, because I already felt broken and worthless because of my disabilities, and he amplified that.

When I was with my ex, he never showed any sympathy when I was ill from POTS symptoms (dizziness, breathlessness, brain fog, migraines, etc.) and no sympathy when I was near fainting or had fainted. And I find out, after breaking up with me, that he thought I was genuinely faking... to "manipulate him into getting back together with me." Like 🤣 Yah I just love fainting 🤣 Also, Imagine just being the worst partner, breaking up with your gf, and then thinking "yeah, she still wants me"; just so insanely narcissistic! I wish he'd feel the amount of suffering that I and other people with POTS deal with on a daily basis, then tell me that I'm "faking". Soooo glad he's an ex. Every day I suffer with POTS, but I don't have to suffer this jerk anymore. 🙌🙌🙌

With all my health issues, and given the way my ex treated me, I thought nobody could ever possibly enjoy being with me because I make everything harder and actively can't do many things. But this guy I've been seeing, he makes me feel like I'm more than my disabilities. He sees right through my cane and rollator, which is what most people stop at. He actually sees me for me, not for my disability. To him, my disability is just a complication that we work through together. It's given me such hope for the future, despite everything.

If you're struggling with dating, try to have hope. I've discovered that there are actually genuinely good people out there 🫂 And let's all collectively throw all our jerky exes into the dumpster!!

I mean not ruin completely but I used to LOVE salty snacks and all my life I loved chips and anything super salty. Then once I started taking salt pills I felt turned off of salty stuff and more onto sweet. Now I like cookies, cake, ice cream, you name it. Even candy. I never in my life have been so into candy. And meanwhile I can still have chips but I'm good after like 3 or 4. Just wondering if this happened to anyone else

I am having a hard time getting any of my health providers to book a tilt table test for me. Has anyone in the GTA been able to book one for themself? I'm tired of being in limbo waiting for the diagnosis. My long term disability wont get approved without some proof i am "actual sick". I want my life back and i need something to work with. Y'all know how debilitating this condition is. If i have a diagnosis i feel i can move forward somehow.

I have neurologist (dismissive), a cardiologist (patted me on my back and sent me away, and a gp who just doesnt seem to be able to follow through with paperwork.

Hi! Could someone please explain to me in super simple terms the difference between dizziness, lightheadedness and vertigo. I know I experience different types of feelings and want to track my symptoms but I struggle to actually identify the difference (probably due to my autism) and I'm not entirely sure what the specific words mean. I did try googling but feel like I got more confused lol, ty!!

i did a colon prep a week ago and it was awful, ive been in a horrible crash since then and my nausea has been extremely bad and frequent.

i have zofran, i know about nausea bands and that pressure point isnt helping, smelling rubbing alcohol is not enough. if i sit up for between 1-10 min i get horribly nauseous, i have emesis bags next to my bed but i dont actually puke much but the nausea is debilitating.

im mostly tube fed and get all my water thru my jejunum, the only thing ive been eating orally all week is at most a cup of rice a day. Im also constantly hooked up to my gastric drain bag(i have gastroparesis).

any tips on quelling nausea because this is extremely debilitating and i have an extremely important appointment tomorrow

I got diagnosed with pots this year but have been trying to get tested since 14.

This year has been a mess. I have grown so much weaker. My body hates me. Im always in pain. It feels like my nerves are on fire.

I have always fainted. Since I can remember. But this year I have started to have seizure like symptoms when I faint.

My body is so weak. Im so tired all the time. I can’t get out of bed to work. It’s been weeks. Months. I don’t know what to do. This has thrown me into the worst depression of my life.

The meds feel like they do nothing but I am hoping they are doing something. I don’t know What to do. Im just ranting bc I am so tired of living like this.

A few things I want to add.

Every morning i wake up with incredible join and body pain. It feels like everything is on fire. My body feels weak. I stand up very slowly. And move very sluggish for the first 30 minutes. My vision goes all blurry and wonky.

I also have HEDS. Which revolves around hyper mobility. IVE been told it’s possible for this to come hand in hand with pots. So this is another reason my joints suffer so much.

I feel sick 24/7. Cold and flu like symptoms. Belly aches. Headaches.

I feel weak every day. Like my legs could buckle beneath me at any second.

My motor functions DONT work as well. I find myself with Insane brain fog. Like I can’t remember anything. My heart is always racing. It never stops.

I just want to feel normal. As normal as I can. If anyone has any suggestions or advice please let me know. Im 20 years old and bed rotting 24/7 because I feel like my illness is taking over my life. So any advice would be appreciated.

A stressful event, that began last night, has left my nervous system fried.

I can’t talk about it without crying.

I can’t sleep right.

My hands are shaking constantly and extremely sweaty.

I feel like I’m constantly having adrenaline dumps over and over and over again.

No amount of hydration, salt, distraction is helping.

I have no appetite (literally just ordered smoothies for tonight and tomorrow cause I’m too exhausted to chew).

In the last 6 years of dealing with POTS, this has been the worst flare or event or whatever you want to call it.

I’m doing my best to keep it together and trying to care for myself but my god is it difficult when the simplest thing sets me off.

I have had some bad temperature dysregulation today. Woke up at 96.3F, and I felt feverish, I figured I’d try to work and thought that maybe once I was up and moving it would go back up and I’d feel a bit better. My temp runs on the lower end naturally anyways (around 97.5F) I threw a sweater on over my shirt and headed in.

Once at work I stepped into the room and was instantly hot, had to roll up my sleeves and thought about removing the sweater.

A couple hours pass and I’m feeling worse, chills, sweaty, having trouble catching breath, throat hurting (it hurt when I woke up), shakey, nauseated.

I decided to go take a Zofran and check my temp. This time my temp was 95.4F. So it dropped.

I then ended up deciding to just go home because I was feeling bad, and ended up vomiting.

I got home and took vitals, temp still running low and oxygen is a little low, but not like, a concerning amount yet (95).

I’m now laying with a heating pad on my toes and a couple of blankets to try and bring the temp back up.

Also, my brain fog is terrible. Once I got home and settled I tried to fill out some paperwork for an upcoming doctor’s appt, when it landed on “what’s your address” I literally just blanked on what my house number was. I’ve lived in this house for a decade. I just kept blanking and could only remember my moms address (she’s two houses down) but not mine and had to sit there for a while to come up with it.

One of the last times this happened I ended up with a total whiplash of a high fever the next day.

Gotta love temp dysregulation, keeps us on our toes.

I need to stop Eplerenone 12,5 mg,it makes pots worse.For those who stopped,are there any withdrawal symptoms?

I’m not sure where to even start.

Wednesday I was hospitalized for observation, it took until Saturday for them to rule everything out that could be seriously medically wrong (luckily there wasn’t). But they couldn’t diagnosis me with POTS (as they have no specialist, but from the nurses to the surgeon and a neuro specialist who saw me to confirm my FND (Functional Neurological Disorder) were confident in it). So now I have an unofficially diagnosed POTS, diagnosed FND, and my GAD (General Anxiety Disorder).

It feels like my body is just playing tricks on me. Before being hospitalized, my symptoms were always at a 4. I had throbbing leg pain, pins and needles in both legs. It felt like my legs couldn’t support my weight, like I may fall, and the nausea standing and sometimes sitting was killing me. In the hospital they settled from a 2-3.5. Coming back to my college, my symptoms flared to a 5-6 constantly but went down the night before classes to a 2. Today I’ve had zero issues until right now, where I’ve flared back up to a 4.

How do people handle this? How do I get my college to help me??

My college advisors aren’t available for a week. I want to go home, I can’t do this alone and my friends aren’t helping. They help but the dorm room we live in is never clean (it’s what you’d expect any 4 college kids living together might look like) and it’s making me so anxious and unable to step outside of my room. Days feel debilitating and the Atenolol that’s been prescribed to me helps but makes me sleepy and unable to think!!

Just do exercise is all I hear, and sure maybe that will help but I can’t do it off the bat and by myself?! The hospital said physical and cognitive therapy and I think that’s a good step but my general doctor and cardiologist just say to work out. How can I do that with no direction and when my brain is playing tricks on me every day?? I don’t want to be medicated for my anxiety, that gives me anxiety.

My college advisors aren’t helping or available. They wont respond to my emails and the only people who seem to be on my side are over 3 hours away!! I don’t need an emergency medical leave, I just need to move everything online?!!

I don’t know :(
Thanks for reading I just needed to get it out (. . ) but I’m generally at a loss for what to do.

A few weeks ago, I was prescribed Propanolol for vestibular migraines. Safe to say, it did not agree with me and so now I'm going back onto my trusty Bisoprolol. But, the GP put me onto Amitriptyline for the migraines instead.

I'm more than a little hesitant to try them because I've heard (curse the internet) that a very common side effect is tachycardia, plus low blood pressure.

The Bisoprolol already puts me on the edge of low blood pressure, so I don't really want another medication adding to that, and I also don't want my palpitations getting worse.

On top of that, the GP didn't seem to know what on earth they were doing so I'm weary about trusting their judgement. They didn't know anything about my medical history and I even needed to tell them that I need to be on a beta blocker for my POTS because they had no idea, which is how I got prescribed Bisoprolol again.

Has anyone else with POTS had experience with amitryptiline? I'm mostly worried because I don't even know what type of POTS I have since it was never properly investigated. I'm having to see a private cardiologist to figure it out and I would like their opinion before I take this medication.

I am 19 and was diagnosed with POTS today (Probably because of a virus I got last year). I’ve been prescribed 5mg of ivabradine twice daily; prior to this, I had been taking 2.5mg of bisoprolol daily for the last 2.5 to 3 months. Does anyone here have experience with ivabradine compared to bisoprolol?

Also, I have another question: does anyone else struggle with stress and nausea—for example, while at university—and what helps most with the nausea? Even while on bisoprolol, I’ve experienced a racing heart at university over the last few weeks, which triggers nausea and feelings of panic or anxiety.

Additionally, what does your exercise routine look like? I’ve been advised to start exercising in a lying-down position—things like swimming, rowing, etc.

I’ve had pots since I was 11, but in 2023 I had meningitis and it got so much worse. I currently pass out at least 8 times a day, I have a port and get daily infusions on 1L of normal saline. I currently see Dr. Armitano in Mountlake Terrace and I feel like he’s not listening to me, he only has me on ivabradine and fludricortisone and is not trying me on other drugs even though I keep telling him they aren’t doing anything. The only thing that has helped is infusions but they only help for a few hours and then I go right back. I’m so lost. I’m in the hospital all the time, but the hospital keeps telling me they can’t admit me because it’s not life threatening or that my case is too complex for them. When I ask to transfer to a hospital that is more equipped for my case they tell me no. Mayo Clinic has approved me for an appointment and so has UW but they both only do diagnostic testing and no long term care. I’ve already been diagnosed and need long term care. I’m so lost and so tired of this. I just started my teaching career and I feel like I’m failing because of my illness. How am I supposed to live like this.

Please any help is appreciated.

I was recently diagnosed with POTS and have found compression leggings to be incredibly helpful. However, the waistband tends to roll down with movement, specifically bending and sitting. Is this just a known issue or do I need to size up? I'm afraid if I size up that they will not be tight enough for my legs. I'm also 5 months postpartum and don't want to invest in high end leggings since my body size is still in flux.

I mostly experience tachycardia (possibly with low blood pressure) where I nearly pass out, the runs, and temperature dysregulation. I think they are like adrenaline dumps.

I’m relatively new to this (I went a whole year without symptoms) - do you get used to it??? I hate the feeling , makes me scared to drive, be alone with my kids etc.

So I started Midodrine about 5-6 weeks ago (after already being on pyridostigmine & guanfacine) and was in absolute disbelief at how immediately and amazingly it made me feel normal again - like to the point I was tearing up because I didn’t realise how much ability I’d lost. It felt so good to get it all back, to be able to walk around, cook big meals, do chores, GO CLOTHES SHOPPING, all by taking 2.5mg every 2-3 hours. The pots symptoms would start creeping back in, then I’d take another dose and feel fine.

However, no one said anything to me about whether or not the feeling better / having more capacity was ‘genuine’ capacity or if the midodrine was just masking things. I did wonder - if I just take more midodrine so I can do more things, will I pay for it later?

And here I am, 5-6 weeks later, in the biggest crash I’ve experienced in months - body feeling like lead, like something is crushing my chest, unable to stand up at ALL, to the point I’m wondering if I might also actually have ME/CFS. I seem to have gradually developed a tolerance to the midodrine, it’s been doing effectively nothing over the last week, even when I’ve increased the dose.

Does anyone know if this is a problem with midodrine - like it gives you the ‘illusion’ of being able to do more when really you shouldn’t be? Or is the experience / reaction I’m having unusual?

Also, while I’m here, how do I know if it’s ME/CFS or just POTS? :/ For context, I was an avid boulderer before developing POTS, and have been able to continue climbing for the most part over the last 6 months of having POTS really badly. In fact, if I’m not in a 7/10+ flareup, it usually makes my symptoms better. Walking around the shops for 15 minutes will kill me but climbing extends my capacity for the rest of the day - even if I feel dizzy before I start. However, over the last 2 weeks, I’ve been having these huge fatiguey crashes more and more the day after climbing - like extreme full body exhaustion - hence me worrying about PEM.

TLDR: does midodrine actually extend capacity or does it just give you the ‘illusion’ of having more capacity and cause a crash later on

EDIT: before anyone asks yes I also wear full body compression religiously and drink 3-4000mg sodium electrolytes a day + additional salt in food

I was diagnosed with POTS in 2023 after my symptoms really kicked up in 2022, but I now know that my symptoms that stretched back about ten years ago were related to POTS.

By far my worst symptoms is PVCs/PACs. I wore a heart monitor for two weeks in 2022 which showed I think 14% of my heartbeats are irregular, which they weren’t concerned about, but I had a few runs of “couplets” that they said they didn’t like but were probably fine. I got put on metoprolol and that’s helped, though certainly not eliminated, the irregularity.

For the last few weeks almost every night I’ve been waking up to an extremely irregular rhythm that’s enough to make me wake up from a dead sleep. The only way I can describe it is it feels like my heart skips a few beats, beats very hardly and irregularly for a few seconds, and then that kicks up a bout of tachycardia and irregular heartbeats for 10-20 minutes.

I have an appointment with a cardiologist that I’ve been waiting for almost two months for in late November. I’m just so, so fucking sick of this feeling and I quite literally feel like I’m going to die when it happens. A lot of anxiety that had abated after being diagnosed is resurfacing. I’m calm when it’s happening because I’m so used to it, but the last few nights I get SO anxious going to bed because I’m just convinced I’m going to drop dead.

I just need to vent as I’m getting ready to go to bed and started getting weepy thinking about it happening again tonight 😂 thanks for listening

So, it's established that POTS on its own messes with glucose metabolism.

Autonomic Regulation of Glucose in POTS - YouTube

I was personally finding my fasting glucose and HbA1C drifting upwards, as well as more instances of nighttime waking that I usually resolve through eating (typically I have a protein bar), implying this is somewhat of a blood glucose issue.

So I booked an appointment with a dietician, and also asked my GP to prescribe a CGM so I could start tracking my blood sugar. It's been enlightening so far in ways that I am not sure I am ready to articulate after only wearing it for 3 full days.

I'm wondering if anyone else has worn one for a while and what you gleaned from the experience?

(Please don't ask me how you can get this approved: I have no idea. I live in Canada and this is covered with a prescription under our extended health benefit plan.)

Hello! I've had PoTS along with ME for nearly 2 years, was diagnosed with PoTS eventually in July this year. I've just started on ivabradine which is amazing and obviously been drinking electrolytes and wearing below knee class I compression.

I have just been prescribed class II thigh length compression socks and had to buy a garter belt to wear with them. Being able to sit upright instead of lying down all day is amazing, however: the clips on the garter belt are digging in. I have basically no muscle now after a severe ME crash which lasted for months, so the metal clips are straight into my skin and fat whenever I sit down and causing small bruises and itchy welts (I always react to heat and solid objects compressing skin).

It's a minor complaint in the scheme of things but does anyone have any hacks to help with this?

I can't think, or feel, or articulate myself. Thinking is so hard, doing anything that requires mental effort is exhausting.

I just want it to stop. I just want to get on with my life. It was already hard enough.

hey gang. so as we know hot days are the worst enemy of the POTS sufferer. however now it’s starting to cool down (FINALLY) and i find myself a bit chilly. this will be my first winter with full-fledged POTS and i’m wondering if heat pads/hot water bottles/electric blankets will have the same detrimental effect on my symptoms as a hot sweaty day? obviously it’s a little different as i’ll only be using these at rest, but i don’t want to risk making myself feel worse in an attempt to not freeze.

sorry if this is a dumb question lol