Anyone else get a hard pounding heart beat just from rolling over in bed? Not necessarily a really high heart rate but slightly elevated and beating hard.

Its just that the few people in my life refuse to believe there is actually something wrong with my body and that im dramatic. Its especially hard with how my mom acts and im stuck living with her when she makes things harder. I got diagnosed without officially being diagnosed among other health problems I have after some stuff with er doctors and I lost my health insurance and cant afford a specialist without it so I couldnt follow through with my refferals and my results and some main symptoms were listed on my summary reports. Despite all that and everything else that has happened with my body im still not believed or supported. I hate getting called lazy when I hate feeling this way especially when my body does a lot worse like it is today and not being able to do anything all week. Then my stress or generally my mind gets blamed but I wasnt so messed up and changed mentally until months into my body failing me and im still trying to hold on after all this time despite having support or medical assistance right now. Im just asking for others to maybe share their struggles like this or to say anything really. I know im not alone in feeling this way but I'd just like someone in my life to one day support and believe me that something is wrong with my body. Thanks for reading my rant over this.

For those heading into a wonderful world of perimenopause, how have your POTS symptoms changed? From my own experience and in talking with other women in the same life stage, seems like the symptoms get worse and then seem to stabilise somewhat post menopause.

I am probably in early peri, at least according to bloodwork, and have been on HRT for about 2 years. So far I do not see any improvement in POTS symptoms, actually they've worsened. My main diagnosis is EDS and venous insufficiency, with POTS and lymphedema being secondary, and my doctor is focusing on managing the EDS symptoms first (also unsuccessfully).

Looking for some personal experiences with stopping HRT and the effect on POTS symptoms, as this is what I am considering at this point.

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???

What type of doctor or nurse practitioner helps you manage your Pots? I have been searching for months- my cardiologist, my neurologist (who treat my MS) and my primary all are uncomfortable/unfamiliar with treating Pots. My neuro said see your primary. My primary said she'll refill my script if I can't get anyone but has no further advice. My cardio sent me to the ER. I won't be going back there.

I ended up with my electrophysiologist who treated my SVT years ago and a cardio attending and fellow at the hospital who did a work up overnight there.

They diagnosed me and put my on Ivabradine but they will not follow me and help me improve further than that.

I have searched for 2 months over and over again and I'm in a major So Cal city! The two cardios who know pots around here aren't taking new pots patients and there are literally no neuros that treat dyautonomia here. I could go to Stanford I guess but hardly seems worth it rn. I'm so exhausted.

I wonder if I should just stop seeking and take the Ivabradine and that's that. I just want to feel even better. Maybe getting pots specific care is a YouTube fantasy??!

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!!

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.

Pretty underweight (always been) 20M. For the past 4 months, I have been experiencing a constant feeling of unreality. It feels as though I am drunk/high or half-asleep, as if I am on autopilot and everything around me feels somewhat unreal. I have searched online, and my symptoms seem to resemble derealization.

In addition to this, I experience fatigue even when I sleep well. The fatigue does not seem to depend on whether I do physical activities during the day or not. However, over the past few weeks, I have started sleeping poorly and waking up early in the morning.

I also experience headaches, pressure in my head, and neck pain. I have tried muscle relaxants and massage therapy for the neck pain, but neither has helped. Also at the start of this i sometimes felt like fainting when walking but it has gone away. I also have noticed one singular eye floater on my right eye.

What could be causing these symptoms? They do not occur in distinct episodes, and the headache is not particularly severe. It feels more like a tension-type headache.

I have tried triptanes, but they did not help. My thyroid function is normal, as are my vitamin B12, B9 and vitamin D levels. My ferritin level is 37. And it has been changing from 49 to 24. I also havw crohns disease which is in remission.

My neurologist prescribed escitalopram as a trial, which I took for two and a half months, but it did not help. She also did head mri and there was nothing wrong.

I have no history of trauma, no panic symptoms, and generally do not experience much stress, apart from the stress caused by these symptoms themselves.

My symptoms started in the final days of my new job in car repairshop where i was moving car tires and lifting them. Im not sure if this can be linked to that because i didnt have any symptoms expect the final days. I have not been working at all during this 4 month period.

What could be the underlying cause of these symptoms?

I have been using abdominal compression for a while now and love it, but I had a friend who also has pots suggest compression socks in addition to abdominal compression, which is a pairing I hadn’t considered before (I guess in my head, one compression garment was all I get? 😹).
Has anyone tried this and liked it? Noticed any differences in quality of life when just wearing abdominal vs abdominal + socks? Would be interested to hear everyone’s thoughts!
(Also I have considered tights but I live in such a warm area and have so many sensory issues relating to hot weather that idk if it would be feasible)

I have been having really frequent and awful presyncopes lately, and a couple of actual faints. I am getting better at lying down with my legs up when it happens, as well as getting some salt and electrolytes it.

My work have been amazing, and the few people in my office know now to just somewhat ignore me when I place myself on the floor. Theyll ask if I need anything but then just crack on working.

The issue is, I work in a school and our office is a bit of a cut through between two areas so other staff are walking through constantly and everytime they see me on the floor they freak out. Even though my colleagues are all in the same room ignoring me, like guys... if it was a problem, they wouldn't just be leaving me to it lol

If anyone has pots and got nexplanon I was wondering how it affected you because I currently struggle nausea quite often because of my pots and I’ve heard the nexplanon can make it worse and on top of that I have emetophobia

i’ve waited for a neurology appointment for pots for a whole year just for them to tell me they can’t help cause they only do things with the brain and not heart or blood pressure. my blood pressure and heart rate was high at the appointment 145/104 mmHg was highest it was, raised when i stood aswell as my heart rate. so then i got referred for an mri scan and then my gp referred me to cardiology instead as i waited a year for nothing.

then i got a letter through today saying they’ve declined my outpatient appointment and that my gp will contact me for next steps, what does this mean??? i don’t understand why they declined me when i struggle everyday and have done for years due to this, i just want a diagnosis

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 talk I got diagnosed with pots and my doc said to buy compression leggings that go up to my abdomen, I was wondering if yall had any recommendations for some ones that I should try.

Diagnosed with POTS, prescribed metoprolol to manage HR. Generally, the metoprolol has been a huge help in getting some of my life back, so much so that I was able to join a chorus. I still have symptoms and it isnt easy, the blood pooling and numb feet are a constant battle, but it has been incredibly rewarding.

I wear a visible band so I have constant HR data. At first, I noticed that during rehearsal my heartrate lowered into the 60s, which I thought was incredible. I thought singing was regulating my nervous system or something. But things started to get wonky after a while. Now, when we are in the middle of a song, my HR will plummet down into the 40s. I often feel dizzy and weak when this happens.

I try to sit through rehearsal when I am having a tough day, and this does prevent the HR plummeting. However, I cant sit through a performance. We sing a very lively style of music and we are expected to move around (in place) and be expressive. I am struggling with this a lot as I am trying my best to just keep my balance and stay upright. The risers shift when other people move, and I get dizzy. We are traveling for a huge competition next week, and I'm terrified. We had a sort of final dress rehearsal performance for friends and family a few days ago, and I got lots of comments that I was too still. Everyone is telling me to have more fun with it, and for the most part I let them believe that shyness is the issue.

I spoke to my cardiologist, and he had no insight at all as to why my HR would drop suddenly. He said he didnt want to change my medication unless it was preventing me from participating in chorus. I explained that it was in fact extremely difficult to participate, and he still dismissed me.

The only other time my HR has dropped like that was once at the movie theater. I smoked some weed in the parking lot, then rushed inside bc I was short on time. I had to step away from my parner in the concession line to find a wall to lean against. My HR was extremely high from smoking and speed walking, which is to be expected, but then it plummeted down for a minute or two, and then went high again. It felt like I was moments away from fainting.

Has anyone else experienced anything like this? Any insight or advice would be very welcome 🙏

I’ve been in college for almost a full quarter now and I’m so so angry. I picked the school I’m at now because they said they have other students with pots and that they fully understand how to get accommodations in place to make this college a wonderful place for those with disabilities. After being here, I realize that that was very much a lie. I have almost no support and I’m doing a ridiculous amount of self advocating even though there is an accommodations department. I’ve also had a specific professor tell me that he basically doesn’t believe that I have a condition since he saw me at the dining hall eating after I was unable to attend his class earlier in the day. He also told me that I should consider taking medical leave and returning when I’m “over” my illness after missing just two classes over six weeks during a flair up. I hate how small I feel here and just wish I could find a way to make this work for me, but I just don’t know how.

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’m feeling so frustrated right now. It‘s not the first time either for so long in my life. I live with three smokers in my family (my dad and two brothers). Weed. Black & Mild?? Cigars? idk. My mom and I are the only ones in the house now that don’t smoke. I have POTS….been diagnosed for a few years now. Anyways, ever since I was a child I haven’t been able to stand the smell of smoke. I don’t know if that’s because my health problems or just because I’m sensitive to it because I have a strong sense of smell? I have always been the sick one in my family and I don’t have the best immune system.

I can’t tell if my sensitivity has gotten worse throughout the years or if my sense of smell has gotten stronger. But the point is my body hates the smell. period. All three of the smokers know that I’m basically sensitive to it. My mom has told them that if they do smoke…to open the window or light some incense. But sadly, the smoke smell comes into by room any way it can; through the air vents and under the doors. I don’t know what to do…the smells are too strong for candles, I cant tell the future so I can’t predict when the smell comes into my room, and i can’t light incense in my room because I’m sensitive to that also…especially in areas like my room.

I’ve been wanting to rant on here for a while now but I never did. I guess I reached my limit because I’ve been sleeping terribly lately, my chest hurts, I’ve had headaches begin the last two days and i almost had one today when I smelt the smoke, and my constant lower back and shoulder-blade pains/uncomfortability have been more bothering for the last two weeks (?).

But yes, I’m feeling frustrated because I don’t know what to do and I’m tired of not feeling comfortable or at peace in my own home or in my own bedroom. I constantly tell my mom, but I don’t know how to tell her when I feel this point of frustration because she just doesn’t GET or UNDERSTAND since the smells don’t bother her and she doesn’t constantly have something wrong with her, nor does she have POTS. Like what I feel right now...i can’t fully explain it.

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

For context I was with my friends yesterday, everyone was talking and I started feeling nauseous, not something crazy for me, or so I thought. I told my boyfriend I was tired as to not freak him or all of my friends out, and then I remember asking if I could go sit down while they finished talking but I was offered to sit closer to where I was, I don’t know much from here but I can try, I remember my boyfriend took my hands in his and I couldn’t see anything except my hands in his or really hear like normal, the walk to the other side of the car felt like an eternity but I got there and as soon as I sat down it was like I could feel my body have a wave of awareness again and after a while of breathing I could see but couldn’t hear too well, it almost felt like there was fluid leaking from my ears, on the drive home my head started slightly hurting but it’s gone today. I have a slight belief this has happened before a few months ago at a car show and on the walk back to the car I felt better. I’ve had a lot of health related things with my connective tissue and my heart but nothing serious enough to go to the doctor and get it looked at/be taken seriously. Google is telling me all these suggestions but I’ve never seen that fainting while standing still could be related to pots. Could my family on Reddit help me?

I had my first ever Tilt table test today. And I'm so freaking tired and frustrated. Firstly they tell me I had to fast so I have been hungry all day. I get they and they put in a IV. Then they finally take me to the table. They let me lay the for like 5 minutes, and then strapped me in and tilted the table to 70 degrees. They said my baseline vital was 130/80 mmHg and heart rate was 97 beats per minute. During the next 20 minutes my blood pressure range from 129 to 144 mmHg and my heart rate ranged from 96 to 101.this what my test results paper says. But I was able to look at the screen and my heart rate went up to 116 before they noticed I was looking and turned it away and then I was have my symptoms, dizziness, nausea, tunnel vision, black vision, hearing difficulties, dry mouth, frantic eye movements, prickly pins and needles in my feet and legs, and my body felt week. They watched all of it go down kept tapping on my because I was "dosing of or zoning out". I was unstable after words, and they mean to tell me that nothing is wrong. They watched it. 2 doctors watched it! I have had a Echo done, blood work done, body scan done, and now this test and still nothing freaking shows up. It makes no sense, I have been struggling with my pre Syncope since I was 15, I'm 21 now. There is obviously something wrong and I'm tired of going to all these appointments and nothing goes well. I'm tired of being poked with all these needles. I tired of everything failing. If it's supposedly not POTS the what the Freak is it!

Please someone give me advice PLEASE. This has been ruining my quality of life, I want to be happy.

I 32f have been diagnosed with POTS for over a year now after getting pneumonia a couple years ago that set everything off and led me to getting diagnosed with multiple chronic conditions. I recently got a bad cold (with multiple negative Covid flu test results) and then the October slide happened and a couple weeks ago I went to my doctors express care (just for minor stuff) for some shortness of breath etc and an xray showed some mild inflammation in my lungs. The PA said it wasn’t pneumonia it was probably the cold lingering but that if I felt the same or worse in the next week to come back in and last week I felt semi better and pushed myself a bit and pretty much flared bad starting Saturday again and I’m getting the increased shortness of breath/ exhausted 24/7 feeling again so I’m probably going to go back sometime this week to get a repeat chest xray cause I do not want full blown pneumonia again >_< My parents that I live with have been very supportive in certain ways but they’re asking me why I can’t just deal with my symptoms right now. I’ve told them things are worse and they retort back that I’m never healthy anymore why bother going to all these appts etc which stung pretty bad emotionally….. just venting because something definitely feels off and I saw my hematologist recently and she said my iron levels are also a bit off so it could be that and I’m scheduled for an iron infusion next week, but I also want to rule out if I have something in my lungs because this scenario is almost exactly what happened a couple years ago where my iron dipped, I had an iron infusion and then I had to go to ER days later because I didn’t know I had pneumonia at the same time and it sparked a full blown POTS/MCAS/PEM event for months :/ so yeah I’m just annoyed that my parents/family at home are being unsupportive and invalidating to this situation >_<

Hi, I am 22 (and chronically ill) and feeling increasingly hopeless about my future and the state of the world.

I currently have support from my family, but I feel guilty having to rely on them, and I know they won't be around to help me forever. I want to have a job so that I can support myself and feel fulfilled in life. I also want that job to be something I somewhat enjoy doing and/or feel good about.

I am currently working towards an associate's degree in biology at my local community college. It's a two-year degree. I am about halfway through, but it has taken me two years and might take me 4 to finish. With my health issues, I find it hard to focus on more than 1-2 classes a quarter. Despite my issues, I feel like I need some sort of career or job to feel like I have purpose, but I am worried that I won't be able to find anything between my health issues, ADHD, the current state of the job market, and my criteria of it being something I enjoy or feel is fulfilling. I'm not sure there is anything I can do.

My interests / career ideas
I love animals and biology and would love to work a job that I feel is related to conservation, environmental issues, or just animals in general. I also love art, baking, and video games.
I have considered jobs that involve baking, animals, biology, conservation, art, creativity, video game asset creation, or doing some kind of good in the world.
Unfortunately, AI has destroyed a good portion of the job market, practically in the art and video game space. I fear my options there or in remote jobs will be extremely limited, and these jobs will most likely consist of the most talented people, of which I am unfortunately not.
Additionally, my physical ability and stamina are limited. I have POTS, and physical tasks can quickly exhaust me and cause me to pass out. I struggle to stand for longer than 3-30 min depending on the day. I am also extremely tired of school and would like to be headed into the job market sooner rather than later, so career paths that are particularly long and hard are off the table for now (like doctor, nurse, or veterinarian)

Health Issues
I have struggled with my health for about 10 years now. I have been diagnosed with POTS, but I am unsure if there is more going on. Mostly, it is extremely inconsistent. Some days I have energy and motivation and can run errands, walk several miles, and get lots done. I don't have any issues staying upright or even doing physical tasks, but other days I struggle with extreme fatigue, brain fog, and focus. Any physical task triggers a dizzy spell followed by needing to lay down and pass out for a few minutes, standing for long periods, even just trying to bake something can be extremely painful and cause me to pass out. Focusing on mental tasks like homework can be difficult too. I would say when I have one class per quarter (4ish hours a week) I pass out about 2-3 times per month in class. But also I pass out in class way more often than at home. I have been trying to find doctors who can actually help me manage my symptoms and am hopeful that with the right help I may be able to increase my ability to do things and hopefully work someday but so far I have been unsuccessful at finding this health professional.
I also have ADHD. Sitting still isn't really a problem for me, but physical movement (even just working with my hands) can help me focus, focusing on things can be hard sometimes, practically if it is something that I don't care about or am not enjoying. 

Any advice is welcome,
I just feel kinda hopeless and like I'm just floating around, I don't really know what to do with my life but I don't want to just sit here doing nothing consuming resources, I want to be doing something, contributing something, supporting myself somehow, but with the job market looking like a mess (IDK if I could find a job even if I was completely healthy) It just doesn't feel like there is anything for me, if anyone has any idea for what I should be doing or focusing on that would be great. Do I try to focus on my health in the hope that it will make me more able even if there is a chance that I will never get better than this? (with this condition sometimes people improve and sometimes they don’t).
Do I continue to work on my education even though I feel burnt out and slow, and if so what do I even study? What is worth my time and going to help me get the kind of job I want?
With the job market the way it is Im not sure I can find a job that I can work, so staying in school for now while I wait for job opportunities is a possibility but then what should I be working on specifically.
What job ideas or career paths do you think would best fit my interests and situation? I don't want to spend a year working towards a career only to find out that that career is dead or I can't work that job because of my condition.

Summery
looking for advice on what I should be doing to feel fulfilled, should I stay in school? what should I study? does anyone has any career or specific job suggestions? (even if they require me to study something specific first)

Heya, I had a blood test that indicated my vitamin D was at 14 ng/ml. My magnesium was in the middle range. My b12 was in the healthy range but still slightly lower. My bilirubin was high and same with glucose.

I've been having severe symptoms of brain fog, random bouts of nausea, dry eyes (which I have a cyclosporine prescription for now), struggling to focus, and a feeling of pulsating blood through my head when sitting down. It may be worth noting that this started near around when I briefly used topical minodixiol (only for 2 weeks), but I'm not so sure about if that caused all this. This feels like it might be a blood pressure issue. I used minodixiol 5 months ago.

I was wondering if anyone else had any similar symptoms and if it went away? Or if these symptoms may be something else which they solved.

anyone else drink so much water (and electrolytes) you feel boated and like throwing up? (lol it’s the only way i feel properly hydrated)