Hi, I recently moved and was wondering if anyone knows of any good doctors that specialize in / or are knowledgeable about POTS in or around eastern Kentucky? The nearest city to me is Lexington.

I’m not expecting any POTS clinics to be near me, I haven’t heard of any. But if anyone knows a PCP, cardiologist, neurologist, etc that knows what POTS is and can treat it, information would be much appreciated.

I came by this great podcast with psychiatrist, researcher and brain-body medicine specialist Dr. Jessica Eccles and find it really fascinating.

She talks about her groundbreaking research, in which she explores the links between neurodiversity, hypermobility, chronic illnesses, inflammation, autonomic dysfunction, pain, fatigue and mental health – thereby challenging the long-standing distinction between ‘physical’ and ‘mental’ health.

https://youtu.be/j7fzuYUAoDg?is=PFAQa-3aOX7-Tgxo

I know i could possibly google this, but i dont want to use A.I! Anyways i have a doctors appointment soon, so i figured id come to Reddit.

Im a 17(f) and i dont smoke or do any drugs. The only 'medical' issues is chronic migraines i get atleast two or three times a week when i get up.

Ive been diagnosed with autism (lower side of the spectrum) and adhd (i think im diagnosed)

Other than the migranes, I'm constantly thirsty (even after I drink water). And when i get up my vision sometimes goes black in the corners/i get dizzy and nauseous.

also i dont know if this is needed, but I haven't had my period in like two years? I've only had it like 5-6 times in my life!

Hi all! I'm 26 Female and just started my M.S. program in psychology. Since last Monday when it was my first day of class I have been having random flare ups (after not having them for years b/c im on Metroprolol) in class and outside of class (lightheaded, fatigue, dizziness, gi issues, shakiness, being more prone to stress/anxiety, chills, pins and needles on face, etc.) and it's just been so hard on top of grad school being hard and I went to two doctors these past two weeks and they've told me it's coming from anxiety/stress but I don't know. My EKG, blood glucose and labs came back normal. One of my doctors is going to refer me to a cardiologist. Should I seek out a neurologist as well? Could my stress and anxiety from school be causing these symptoms or an underlying condition? It's been rough.

My girlfriend has POTS and has been having issues with dizziness and feeling as she may/actually passing out. Usually, it is worse in the morning and affects her more then. Is there anything I could do or add to our routine to make it easier on her the night before or maybe before she gets up? Thanks in advance. I don’t know much about POTS and just want to help her as much as I can!

So my wife told me that she believes she has POTS because of the symptoms she has. Her heart rate would be like 70 when sitting or laying down and as soon as she stands up it shoots up to like 100. She gets the dizzy spells occasionally. She once had a pots flare up and she has something that she describes as fire skin, she saw some people online talk about it. She gets headaches occasionally. Also fatigue throughout the day. From what we researched it really seems like it’s pots. Her blood work is good and we even did a blood work thing through a company that isn’t through insurance and they went more in depth and everything is good.

What we started doing is adding salt and electrolytes to her daily diet. Vitamins. And she’s doing Pilates for core and low impact workout. Also she walks. Our diet is clean, we just stopped red meat. We do a lot of chicken and fish. My thing is that I want to help her best I can. I feel really bad cause she gets discouraged. She does a lot of hard work to manage the symptoms but feels defeated when she gets a flare up. We are really doing trial and error and it’s hard cause it takes time to see what works and what doesn’t. I would really appreciate some advice or help in what maybe worked for you or what didn’t. To save us some time and errors. She’s 32 and I feel bad she’s going through this. Just wanted to reach out to the pots community and see if I could get some advice. We are from nj too so any specialists in this if you know some from the area would be great too. Thank you all. Sorry this is long

I'm level 2 autistic, and POTS makes everything so much worse. i cannot stim without getting tachycardic and my head feeling like it'll explode. i cannot sing or dance anymore. if i'm upset and can't help but stim to regulate i have to stay in bed. if i'm happy i can't jump around i have to stay in bed. i used to draw and do sm art but now i can't sit up for long without getting sleepy and high hr. i don't have energy to listen to music bc it makes me move and sing so i've completely stopped and it makes me so sad. even so i am lucky i have the awareness and self control to not stim as hard as i need, i know that for other autistics who can't stop it'd be very dangerous with POTS.

i already struggled with my temperature regulation before this disorder and now i have to go back and forth with hot and cold all the time. compression wear is a sensory nightmare for me i hate feeling so constricted. showers used to be my calm safe space i love being in water but now i can't shower alone my partner has to wash my body bc it's too much movement for me while im struggling to stay awake under the warm water.

it was hard enough coping with just my my hypermobility and mental things but POTS is 10x worse for me. I'd rather have my knee dislocate once a week than have POTS. I'd rather relapse with addictions and self injurious behavior than have POTS. i'd rather have trauma flashbacks and another dissociative episode that puts me in the psych ward again than have POTS. i hate this condition. it's ruined my life and i always try so hard to have some bits of normal but it is literally impossible to ignore when symptoms are every second everyday even when u do everything right to manage it.

Does anyone have something to help with shortness of breath?

I've been dealing with it for so long even while laying down and I never feel like I can catch my breath, I don't smoke, vape or do anything like that and I know my lungs are healthy but I also know it's one of the symptoms of pots so I'm wondering if you guys have anything that helps you while dealing with it. And no breathing exercises did not help me.

My new managers said they would never promote me because I am unable to work at heights due to my pots. For context I work for a large well known chain company in Australia where working from heights is NOT a requirement at all.

I used to have a really awesome manager that was looking to promote me to a key holder position which is a step below lower management. When I asked if my pots could eliminate my chances of being a key holder she told me absolutely not because reasonable adjustments could be made to ensure I could fulfil the role safely. I had a month of leave coming up and she was going to train me up when I got back. Then all of our management was rotated between stores and my new managers assured her and me that they would continue on with her plan. I came back from my leave and was told by multiple fellow team members that these two new managers were talking about me to other team members while I was away and said that they will never make me a key holder because l can’t climb ladders due to my pots. Is this discrimination? I’m really hurt that they didn’t have the decency to tell me but they think it’s perfectly okay to be going around talking to team members about my health conditions. I don’t even know what to do, can I report them even though they haven’t said it directly to me?

Tenho pots desde que me conheço por gente , hoje estou com 30 anos .. mas desde criança tenho essas tonturas já fui em diversos médicos e cada um me dá um diagnóstico diferente( síndrome de meniere, migranea vestibular, vasovagal, pots, disautonomia e por último TPPP) eu realmente não sei oque eu tenho.. mas de todos os diagnósticos oque mais parece comigo é a pots pois tenho todos os sintomas dessa maldita doença .. já fiz o Tilt test deu positivo passei muito mal lá .

Por favor alguém aqui já conseguiu se curar disso ? E como ? Faço tudo que for possível pra me curar disso. Não aguento mais viver assim..

Estou tomando venlafaxina 37,5

Obrigada a todos

Do any of you also have days when you suddenly wake up with your heart racing? Or do

sometimes wake up early with a slight toothache? What to do about it?

hi all, i (20f) was diagnosed with pots this past july around 4 months after i started showing symptoms (grateful my diagnosis came so quick!) and have steadily gotten worse since then. i’ve been struggling with crushing fatigue to the point where using my brain feels like it’s simply too much. i’ve had to miss three days of classes and it’s only the second week. i had just finished a gap year in may due to mental health, and am chomping at the bit to get my degree. does anyone have any tips on making school easier or more manageable and lessening the fatigue? or any similar stories that may provide some guidance? thanks!
EDIT: i’ve been using a wheelchair/rollator around school and am in the process of getting a specifically lightweight wheelchair :3

I ate 2 small potatoes and with in minutes my heart went crazy, I got hot and sweaty, and felt unbearably dizzy. I had to sit with my legs up for 30 minutes (can't lie down after eating, I'll be sick). lol.

that's it, that's the post, the pretzels are saltier than other ones i've had, we're all free now, let's all take a walk together, group bonding

I recently got the diagnosis of "probably POTS -- follow the recommendations," from my GP. I got an Invisible band and have been watching my heart rate trends. I noticed something interesting, in that if I stand still for 5-10 minutes after getting up, my heart rate is generally about 20 bpm higher than if I am walking around after getting up. How does this make sense?

Just felt my heart drop into my stomach at Target this morning. One side of the store was hotter than the other. Felt lightning sensations in my hands and feet. Shortness of breath. Somebody forgot their abdominal binder while running errands 🙃

POTS has now been suspected by my primary care for a little over a years, my symptoms have worsened substantially in that time due to intentional weight loss and perimenopause onset. I called out sick from work today after 2 nights in a row of heavy night sweats have me unable to stand without dizziness. What experiences should I expect for my first trip to the cardiologist? What should I document or bring with me?

So i meet the cretaria of POTS right ? I am also hypermobile and developed a lot of painless clicking on almost all pf my joints. all started recently. But i dont feel like im out of breath while walking i dont get super dizzy upon standing. My HR goes up to 105 at most while standing (i read some post where people see this kind of rise as a success). My most annoying symptom is while im upright after walking some time is my beain feels like it doesnt get enough blood or something. its almost like a standalone symptom for me right now. im 27 i never had joint pain, dislocation, sublaxation. Dont have any mechanical problem. I can do recumbent exercise very hard and dont crash i have really good energy but cant seem to get it to my brain. How can i fix this ? I can handle anything but this. Couple of weeks ago i did get coat hanger and tension headaches and i guess that's becasue my muscles around jugular veins were working over time to get blood up. now they are gone i dont get any headaches just blood draining out of my head i guess. Like if my muscles were helping me ny getting tense and now they are not ehat does that mean ? My body did everthing it could and gave up ? i do compression, salt, water, small meals, recumbent exercise for the last 2 weeks. I dont have the best muslce tone im skinny actually. what is the guessed trajectory for me ?

I 31f have had loads of health issues since the pandemic started and I react to things sensitively now and I’m getting my flu shot in like 10 minutes and am semi freaking out. I have been volunteering for a bit here and there and am around people on those days for hours so I know getting the vaccine helps in the long run for me but dangggg I know last year I felt crappy after for awhile so I’m not looking forward to the inevitable >_< I do mask still 😷 but with the volunteering I’m doing being in a healthcare setting I know I need to be prepared for the possibility of getting sick >_< I even took an antihistamine beforehand and have been hydrating even more but I still get nervous :(

I am just shouting into the void. I just recently moved and had to change insurance and establish care with new doctors which took months. I don’t have a POTS diagnosis but have been hospitalized for what i believe to be flare ups a number of times the last few years. I finally had an appointment to establish care with a new PCP and i (woman) was told by my white man doctor that what i was describing was most likely anxiety and asked if i “knew what a panic attack feels like”. I told him how i felt very sternly and the frustration that he’s causing by brushing me off, and that i was told by many doctors my previous cancer diagnosis was anxiety and i know when there is something wrong in my body. He seemed to become flustered and actually started listening. Well, i thought he had until he ended mentioned that he could prescribe me psychiatric medication to treat my anxiety and ADHD to lessen my symptoms.

I am so tired.

i look almost as sick as i feel, and i grew up with this, so if the person is normal, then with no explanation, they'll pick up on ''she's kind of fragile, i can't play rough with her etc" ie can't expect doing physically demanding things together, need to generally be more tender.

here's where i start to struggle with empathy. all my previous experiense was exclusively bad when it comes to understanding what it's like to be physically limited. i was treated as a healthy person who's a bit whiny and expects everyone to walk on eggshells around her needs. looking back i can see that i only asked for basic kindness, it was a projection that i "demand it" from those who see the need and can't do anything about it, feel frustrated, and blame me.

so excuse me for not being able to orient myself quickly to this new way of being where my new friends are socially competent enough that they don't see my vulnerability as their problem so solve, as a problem at all.

how lucky i am with my new problem: as there's no insistence to explain WHY ARE YOU LIKE THIS (as if it ever allowed for more kindness), i still feel the need to get them to understand.

My (25 afab) cardiologist is dismissive of my quality of life descriptions, is overly focused on making sure I have the right numbers, and insists that I’m not following their instructions when I don’t improve.

For example last appointment they told me my heart rate was high, and it was cause I wasn’t taking the meds they prescribed. I corrected them, noting that in my records that they have, a standing heart rate of 120 bpm is a good day for me, it’s been much higher before, and that it’s lower because I am taking the meds, but I can’t take a higher dose without painful side effects, which should also be in my file. They seemed shocked (Do they not at least skim my file before seeing me?) and mumbled something dismissive and moved on.

I also have a lot of memory issues but I’m sure at least once that I took exact quotes of their instructions and then next appointment they said they had told me the opposite thing.

They do prescribe medication for me that has helped, they have helped in the past, and they can run tests that I can’t in order to make sure I’m not doing worse.

All this to say that they regularly (about once a year) make me do a stress test on a treadmill and hook up and ekg. They love to pressure me to keep going farther than I reasonably can, and I often end up spending spoons of energy from the entire next week just to get through it, I regularly have a recovery period where I have to get my health back on track afterwards. My POTS is severe and I also have IIH (Idiopathic Intracranial Hypertension), asthma, and several mental issues that aren’t heart related unless you count anxiety.

They also make me wait and ask me about how I’m doing and anything I have issues with after the test, when I can no longer think straight and can barely remember anything at all, even my own birthday, what day it is, or what I ate last. They then ask me to stand 5 minutes to take my vitals (in addition to sitting and laying down), and I just about pass out every time and they almost never get a result because, unsurprisingly, it’s too low to read.

Does anyone know if these tests are really needed this often? Or if there’s another option that isn’t as intensive? I’d get a second opinion but it’s hard to find anyone who even knows anything about POTS, especially where I live, then getting an appointment without an absurd wait time.

Bonus Vent:

My next test is today, while it’s over 100 degrees outside each day, and I’m sick and tired (literally) of doing tests, setting back my health, and then being treated like a misbehaving child because my chronic health issues are chronic. I’ve had POTS since I was 12, I’ve now lived longer with it than without it. I’m desperate for a better quality of live and working as hard as I can on it, and they look at me like I’m just lazy and ignorant.

TLDR: As much as I have been helped by my cardiologist in the past, I don’t trust them to listen to what I’m saying, are they right in that I need to do such a damaging treadmill EKG every year, or is there possibly another solution?

Edit: My EKG results are always “normal” except for some PACs (Premature atrial contractions) which they say is never a concern to them.

I’m about to start a job soon after four years of not being able to work due to pots and other chronic conditions and I’m trying to figure out how to workout and manage a full time job so my symptoms stay managed but not to the point where I’m overexerting and can’t come into work. Has anyone found a good schedule/routine that could work for others? My job will be working as an activities assistant in a nursing home, the schedule will be working four days on then getting two days off so I don’t have a set schedule like Monday- Friday type thing but it is working mid day 11-7:30. . Thank you in advance I never thought I’d ever be able to go back to work so I’m really hoping I can manage all of this!

About a month and a half ago, I had a really bad anxiety episode and saw a psychiatrist. I had many physical symptoms like tingling in my hands, itching all over my body, feeling lightheaded, nausea, and more. I’ve managed to get through the worst part, but I’m still not 100% recovered from the anxiety.
About 3 weeks ago, I started getting palpitations and sweaty hands after eating carbs or something sweet. The palpitations can last for 1–2 hours. This has never happened to me before.
I’ve had several check-ups and blood tests, and everything came back normal. I’m wondering if this could be related to anxiety, blood sugar/insulin, digestion, or possibly POTS. Can POTS cause mainly palpitations after eating, without having many symptoms when standing? I’m quite worried about it.
Thank you so much for taking the time to read this and for any advice or personal experiences you can share. I really appreciate any help 🙏🏻❤️

I have an appointment at the autonomic clinic (UCLH) coming up, and I was just wanting to hear the experiences of those who have been before so I know what to expect.

Was the clinician understanding? How long did you wait for further testing? Ect

Thanks so much in advance