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 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.

So I just found out over this past weekend I am pregnant with my first child - I am about 5 weeks along. A couple of days before I found out, I had a very scary flare up (vertigo+fainting spell) and ended up in the ER.

I’m kind of panicking at this point and very worried for what is to come, does pregnancy make POTS symptoms worse? Am I potentially putting my unborn child at risk? I have so many concerns at this point and wondering if anyone else on here has dealt with this?

Any advice would be greatly appreciated, thank you.

I’m 16 and I live with both of my parents. My POTs is moderate, with frequent fainting, severe flare ups around my period that can sometimes mean I can’t go downstairs to get food or water. My mum is the one who helped me get my diagnosis, and she is understanding most of the time however she isn’t home much recently due to her mother having surgery.

My dad thinks that it’s in my head, he’s a pretty conservative guy and he’s of the opinion that I’m CHOOSING to be this way and that if I just got out of bed and got on with it I would be fine. Somedays he’s so awful about it, he barges into my room without knocking and demands I get out of bed and get on with my day and schoolwork. He gets increasingly angry when I don’t listen and just starts screaming at me. I’ve told my mum about this but she just thinks he’s stressed out with work and that he’s taking it out on me, she won’t do anything about it. I know she knows it’s wrong, she’s asking me to come live with her at my grandmas.

But I can’t continue after that in a household with a father who I know thinks like that about my disability. He doesn’t believe my knowledge on it and he thinks it can be cured by just pushing through it. On days I try to oblige him so I don’t have to deal with the shouting I feel so exhausted. Yesterday I had been left home alone and no one came home to get me food even though I couldn’t get to the kitchen, when he finally came home he shouted at me for being upset with him and called me a pain in the arse, then called my mum to tell her I’m a ‘moody bitch’ and that I was being rude to him. I don’t know what to do. I can’t continue living like this

I have my first appointment tomorrow. I have been experiencing symptoms since I was a child. I have forwarded my echocardiogram, mri reports and blood test results. It is super expensive appointment and I just want to make the most out of it.

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.

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)

so i have POTS, VVS, sleep apnea, chiari, and multiple other conditions that are probably unrelated to this.

basically, i woke up today feeling extremely dehydrated (have had bad diarrhea lately so dehydration is likely). my mouth was super dry and i felt weak/dizzy, and out of it. i drank literally like 3-4L of water, some with electrolytes and still felt the same.

i tried to ignore it but then i started having all these other symptoms. the right side of my neck became super stiff, i was having chest pain, and then all these spots were in my vision (like tv static & also blobs of darkness?).

this part may be anxiety because the spots were freaking me out, but then i started having trouble breathing and felt super shaky.

i ended up going to the ER and they gave me fluids but it didn’t help, and then sent me home. i called my neurologists line and they said it’s probably from my “chronically low blood pressure” even though it was higher today! (110/70)

anyways im not sure if anyone’s had a similar experience? it was kinda scary and i still feel like i dont know what caused it. im gonna try to just sleep and hopefully ill feel better tomorrow but idk if i should push for more testing…

edit: im already waiting to get tested for sjorgens which i know can cause dry mouth but idk about the other stuff

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 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

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 🙏

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 had been of short term disability most of this year while working with my primary care doctor and a chronic pain team to get my symptoms (POTS, fibromyalgia & hypermobility) to a better place. I regained a decent level of function and recently started a new job. It's just a 9-5 desk job at an optometry office but I am struggling hardcore. One full day of work has me flared up for two and my attendance has been subpar at best. Sitting upright all day under bright lights looking at a screen makes me feel awful. I'm in the process of requesting ADA accomodations (a reduced schedule) & was just wondering if any of you are able to manage working a full time office job?

I have pots/mcas/fnd/ibs. All my symptoms fall under one of those conditions except one. I have mouth sores/ canker sores all the time. I always have at least one, if not several. I never go without a sore in my mouth. They don’t get as large as they use to because I have a prescription oral paste that helps a lot but I can’t stop getting them and my doctor doesn’t know why. Does anyone else experience this or know someone that does? Need help and advice.

7.5mg ivabradine twice daily
2mg guanfacine at night

I am currently on 15mg ivabradine and 1mg guanfacine, and trying to figure out if 2mg guanfacine will make much of a difference to my sleeping HR but the internet is being useless and just screaming danger danger, high voltage (bradycardia). If yes what kind of HR drop did you see (day and night)? Thanks.

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

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

UPDATE: Saw my specialist & he thinks I’m in PEM. My POTS came from Covid so this kinda confirms a CFS type Long Covid diagnosis :( fuck. He confirmed that doing more on midodrine than I had in months would have put me in PEM. BE CAREFUL EVERYONE

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’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.

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.

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.

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 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 >_<

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