The Truth About POTS: 27 Questions Answered!

POTS hasn’t killed me, but it has stolen my life.

I had a tick on my neck when I was a kid. Probably completely unrelated. I fainted the first time when I was 11 from a hot bath. I fainted 4 other times throughout my life and so I learned to sit down when I felt light headed. I'd literally just stop dead in my tracks and sit until it passed. I lost mobility in my elbow joints about 10 years ago for no apparent reason, it eventually returned. Nausea is something I've always lived with, headaches, joint aches and memory is something I've struggled with for as long as I can remember 😉 as a child I was diagnosed with anxiety, asthma and plain old "bad nerves" I get tremors, im jerky in movement and extremely clumsy. I'm really hard on myself so the fatigue was just me being lazy and I'd just push myself to go harder. I was a runner. 5 miles a day and ate very healthy, then I opened my own business and could no longer find time for healthy meals and exercise. I've been to the ER via ambulance 5 times from November-January and had countless test by my pcp who's just referred me to a cardiologist. Rapid heart rate and low blood pressure. I've had all these symptoms my whole life and I can't believe there is an actual name for what I may have and I'm not just lazy, clumsy and forgetful.

POTS absolutely sucks. I have it along with hEDS, fibromyalgia and other things. Some days, I can't stand or even sit. I have to lie down. A cardiologist can diagnose POTS. My GI doctor suggested it to me. I'd been trying for at least 8 years to get a diagnosis. I suspected POTS and mentioned it to a few doctors. They didn't think it was that. Well, when my GI doctor mentioned POTS, that was the validation I needed to keep pursuing a diagnosis.

We're finally targeting my GI issues. That kidney action was interesting. I haven't thought much about it except how very very active my kidneys like to be. My comorbidity is ME/CFS, likely triggered by mono. We have a LOT of long COVID suffers in our support group. There's so much overlap.

There has to be an underlying cause of POTS. My 16 year old daughter is currently dealing with this. She had a covid type virus 3 months ago. She is now passing out 2-3 times per day, nausea, headaches, fatigue, etc. She was totally healthy before she caught the virus

Oh my word - I would love to be able to come see you. I’m a long Covid hot mess.

Thank you for this video! You helped fill in some of the gaps in my POTS understanding, such as why to lie on an incline. Very helpful details!

I have diabetes and was placed in the hospital for over a month with Covid and Pneumonia. After, I started to develop symptoms of POTS. It is now undeniable. I can barely stand for a minute and have been going through this for almost two years. No one seems to know enough about it. I'm suffering and can't work and no one understands. I'm also having a hard time with my foot healing from a diabetic ulcer. Imagine wearing a medical cast and boot for over a year in combination with POTS … I'm always off balance.

All of these so called mystery illnesses have causes. My so called mystery illnesses are caused by yrs of having undiagnosed mold and tick diseases that caused my immune system to become compromised, I have bad nuerological problems, pots dysautonomia, autonomic nervous system problems, central nervous system problems and all dismissed by this conventional medical system.

Any specifc advice to help POTS from Long Covid?

Please also consider: Studies linking POTS with the Gardasil vaccine, many lawsuits pending. C-19 vaccine needs to be investigated for adverse reactions and increase in POTS Dx..

Your comment about POTS and chest pains is not correct in my personal experience. I have hyper-mobility (not EDS but adrenergic type of POTS). I started having symptoms basically probably since birth, but already in my twenties I started having chest pains. This was in the 1990s and the doctors were already half-ready to lock me up in an asylum for 'white coat anxiety'. Kidding, yet true enough in the sense that I never mentioned to any of them that I was having pain on the left side of my chest when carrying groceries or books from the library or in other occasions of longer exhaustion causing scenarios. I never panicked about it, because I never died and they went away as soon as the strain stopped. In 1995 the doctors told me that my autonomic system had gone haywire but there was no such diagnosis as POTS in their tool box at that time. The pain is still there in such situations, mind you. I'm in my 50s now and my heart has right-sided abnormalities as evidenced by ultrasound examinations. It's not genetic, because it had developed between 2005 and 2018, i.e. between my two heart ultras. There is no other reason for them than POTS, given the only real strain to my heart has been excessive heart rate (the latest being 100 bpm in a 24h Holter - I'm an academic, so not really doing strenuous exercise daily including standing up). In 2009 my condition got a lot worse and I became unable to work full-time (most likely related to the autoimmune developments at that point). I am glad you mentioned the comorbidities with POTS, because in the YouTube world there have been a couple people with EDS and POTS that have died in their 20s. I have non-EDS hypermobility (no skin or digit symptoms) and mild mast cell activation syndrome (only a couple 'attacks'), but I would like doctors to understand that EDS patients are really sick if they get POTS too. I'm in my 50s, but these people with EDS who get complete gastroparesis do not survive for long. I take care of intermitten gastroparesis with herbs that tax my liver (senna), but these EDS patients with POTS are in dire need of actual medical help. It may be because of over-medication, but please do not make them guinnea pigs.

great examples...

i have tachycardia when i have sinusitis 130-150 resting I dont know why I dont feel my heart beating, it doesnt hurt but my heart beat rises by 30-50 and then stabilizes. my eyes feel tired and I feel fatigue for a few days and then my heart rate returns to normal. Anybody else experiencing this after covid, like is the most superficial sinus from saharan dust and the heart rate is out of whack?

I developed POTS after I had Covid 12/24. I developed a sinus infection after that, I still have it. In March I caught pneumonia and the POTS got really bad after that. Any amount of strenuous work exhausts me, and I feel like I can't catch my breath. Also, when I get up from sitting or lying down, I get lightheaded, and it takes a while to catch my breath. I have been to a pulmonologist, and they put me on Advair. My breathing is better and less labored. My primary care Dr. diagnosed me with long covid. I need help getting over this condition. I also have psoriasis and was taking Skyrizi until I caught Covid.

Thank you! 😊

Incredibly helpful thank you

hello, what are your thoughts regarding regular iv fluids for pots? 3 to 4L per week.... 1L administered over 4hrs. thank you..

I got it after covid pneumonia. I beat it!

Lyme 😔