What is POTS?
Postural Orthostatic Tachycardia Syndrome (POTS) is the most common dysautonomia. Dysautonomia is an umbrella term used to describe any disorder of the autonomic nervous system. It’s characterized by symptoms in multiple organ systems and an abnormal increase in heart rate upon standing (30 bpm in adults, 40 bpm in teens). Hence the meaning of the name:
Postural: relating to posture or position the body
Orthostatic: relating to or caused by an upright position
Tachycardia: a heart rate that is too fast or increased heart rate
Syndrome: a group of signs and symptoms that occur together
Among many other functions in the body, the autonomic nervous system is responsible for maintaining normal heart rate and blood pressure whether sitting, standing, or lying down. One example of the ANS is working as it should is when a person stands up and the blood vessels in the lower body constrict. This keeps the blood from pooling in the lower extremities and gut and continues consistent blood flow to the vital organs including the heart, lungs, and brain. In a POTS patient, the ANS does not function properly. The blood flow to the brain may decrease and the patient may feel dizzy or light-headed, or they may even faint upon standing. The heart rate increases as the body recognizes this decrease in blood flow.
Some providers use terms to describe variations in types of POTS:
Neuropathic POTS: Damage to small fiber nerves that regulate blood vessel constriction in extremities and abdomen
Hyperadrenergic POTS: Elevated levels of stress hormone, norepinephrine; overactivity of sympathetic nervous system and may include hypertension (high blood pressure) in some cases
Hypovolemic POTS: Low blood volume may lead to POTS and symptoms also seen in neuropathic and hyperadrenergic POTS
Secondary POTS: Associated with co-existing conditions (i.e., autoimmune, Lyme disease, diabetes)
Signs and Symptoms
With POTS, abnormal symptoms may present in many parts of the body, including abnormal blood flow to the heart, lungs, and brain. It often involves problems with digestion, temperature regulation, and many other involuntary functions of the body. Because the condition involves the autonomic nervous system, which regulates mostly internal functions such as breathing, heart rate, and blood pressure, to name a few. POTS is commonly known as an “invisible illness.” The symptoms often change over time.
Other possible symptoms:
- Lightheadedness, faintness
- Syncope (fainting)
- Short term memory loss
- Mental clouding (brain fog)
- Difficulty finding words
- Difficulty with depth perception
- Sensory integration issues (light and motion)
- Paresthesia (tingling, prickly, pins and needles sensation) unilateral/bilateral
- Migraine headaches
- Fatigue
- Exercise intolerance
- Heat intolerance
- Temperature dysregulation
- Abnormal sweat (Anhidrosis = too little; Hyperhidrosis= too much)
- Abnormal tears
- Abdominal pain
- Nausea
- Constipation
- Diarrhea
- Intermittent gastroparesis (partial paralysis of the stomach)
- Reflux
- Flushing
- Circulation issues
- Palpitations
- Difficulty breathing
- Vomiting
- Muscle weakness or hypotonic (low muscle tone)
- Anxiety or depression
- Tinnitus (ringing or other noises in one or both ears)
- Weight gain
- Panic attacks
POTS symptoms can change and become worse depending on the environment, situation, or other biological factors.
- Standing for long periods of time
- Warm environments including hot showers or baths or being in the sun
- During menstruation
- Pregnancy
- Strenuous exercise
- Illness (viral or infection)
- During or after a stressful situation
Who does POTS affect?
POTS develops more often in adolescents and young adults. It affects an estimated 1 in 100 teenagers. The average age of individuals diagnosed with POTS is between 12 and 50. It is more common in women than in men with a 5:1 ratio. POTS may run in families. Although a specific genetic association has not been identified, there may be a genetic predisposition for POTS. Often an illness or trauma serves as a trigger for onset.
POTS may develop after or along with:
- Viral or bacterial infection
- Pregnancy
- Physical trauma including concussions, car accidents, spinal injury among others
- Surgery
- Autoimmune conditions (notably Sjogren’s syndrome or celiac disease)
[Note: A long period of bedrest can often cause an abnormal heart rate when standing that mimics POTS. This is a typically a temporary abnormality and should not be confused with a full onset of POTS symptoms.]
Some POTS patients have coexisting conditions. This is not an exhaustive list.
- Chronic fatigue
- Migraines
- Fibromyalgia
- Ehlers Danlos Syndrome & Joint Hypermobility
- Autoimmune diseases
- Functional GI disorders
- Mast Cell Activation Syndrome (MCAS)
How is POTS Diagnosed?
It can be challenging to diagnosis POTS because the symptoms vary from patient to patient and most providers have not been trained to identify or understand autonomic disorders. Often patients see several doctors over the course of many years without receiving an accurate diagnosis. It’s important to find a provider who understands dysautonomia. That physician should start by conducting a clinical assessment which includes a comprehensive medical history and physical examination.
The tilt-table test used to be the gold-standard of POTS diagnosis. However, a simple orthostatic vitals test can help providers confirm a suspected dysautonomia diagnosis.
Orthostatic Vitals Test: This test can be performed in a provider’s office by a nurse or properly trained staff member. The test results may provide meaningful data about the patient’s response to orthostatic stress. More importantly, an orthostatic vitals test may confirm a suspected dysautonomia without the use of expensive diagnostic testing.
Tilt Table Test: This test is done to see how the body reacts to changes in position without the use of the large muscles in the legs which act as a secondary muscle to increase circulation. A tilt-table test is helpful when a patient presents with POTS symptoms, but their heart rate does not reach a 30 to 40 bpm increase. By eliminating the use of the leg muscles, with a tilt test a provider can determine if the orthostatic stress is causing an abnormal increase in heart rate.
Prognosis and Treatment
Researchers do not completely understand what causes POTS. While POTS is not life-threatening, it can be very debilitating. There’s no known cure, but symptoms can be managed. There’s no one course for treatment because patients may experience varying symptoms and severity of symptoms. Any treatment should be done while under the care of a provider who understands ANS dysfunction. Some of the non-pharmacological treatments used for common symptoms include:
- Increasing water intake to keep your blood volume up. 2-4 liters fluid daily is recommended
- Adding sodium (salt) to your daily intake or the use of sodium supplements. Salt helps to retain fluid volume in your blood. 5-9 grams of salt daily is recommended.
- Movement and/or exercise daily is recommended. Some patients may benefit from physical therapy, aquatic therapy, cardiac rehab
- Diet changes: Eat smaller, more frequent meals to aid in digestion. Large meals worsen dizziness because they shunt up to five times more blood into the abdominal area. This causes a drop in blood pressure also known as postprandial hypotension). Some patients find it helpful to incorporate salty snacks.
- Wearing compression garments to avoid excessive pooling of blood in the legs and abdominal area.
Some of the top pharmacological treatments may include:
- Fludrocortisone: Increases blood volume and blood pressure. May help in reducing plasma NE with long-term use. (Orthostatic intolerance and orthostatic hypotension.) Increase dietary sodium for maximum effectiveness. Ideal in low doses.
- Midodrine: Tightens blood vessels, increases blood pressure and prevents fainting. (Orthostatic hypotension, POTS and other forms of dysautonomia.) Can cause supine hypertension.
- Beta-Blockers: Decrease heart rate, blood pressure and adrenaline effects. Prevents fainting. (POTS and hyperadrenergic hypertension.) Known to cause mast cell degranulation.
- Pyridostigmine: Increases blood pressure and muscle strength. Reduces breakdown of Acetylcholine in ANS. (Chronic orthostatic hypotension.)
Many POTS patients find that a combination of treatments involving medications, diet and lifestyle changes, physical therapy, and even alternative treatments, can help them manage symptoms.
Living with POTS
Every POTS patient has their own journey. It’s important to take ownership of your own health and advocate for yourself. The number one treatment is education. This means learning a much as you can about POTS and your own body. The goal is to increase your number of good days while decreasing your level of disability.
As you work with your provider to find treatments that decrease your symptoms, it will take patience and persistence. Understanding what makes your symptoms worse and what makes them better will help you find a new normal for your life. This involves tracking your symptoms and making note of any reactions to medicines, food, and activities, so your provider can better understand how to treat you.
26 Responses
My wife is 63 and has many of the POTS symptoms listed here, many of which started appearing after our first COVID vaccination when they first became available. Her symptoms are worsening so last week she had the tilt table test and passed out. The technician conducting the test mentioned that there has been a large increase of women coming in for this test since the start of COVID. Another piece of the puzzle these days?
Yes! We have seen a huge increase in the number of people being diagnosed with an autonomic disorder like POTS since the start of COVID. It makes sense because there is believed to be a link to between infections (viral and bacterial) and the development of POTS. Research in this area is still developing!
I think I have POTS. And it all started after I had covid and was hospitalized for 15 days. I need to go see my primary to see if I actually have this. I have PCOS as well.
This is so interesting. I’m a female struggling with these issues. I finally got covid once back in February or March and my symptoms started. They’ve worsened over time and I’ve wondered if that effected all this.
having been sick with covid is proven to cause multiple chronic illnesses, like POTS. It also has been linked to other neurological conditions, and other conditions in general like gastroparesis. This is why a lot of the chronic illness community is so big on masking around others still. We don’t want to get anything else, and we want others to remain healthy and not end up in a position where they are chronically sick. I had POTS and GP prior to covid, but now I’m unable to work and have been having extremely debilitating symptoms that worsened with Covid.
I was an active and healthy teenager, then I was diagnosed with Lyme Disease and Covid. I was excited when I finally healed from both, only to begin feeling worse as time went on. Then a diagnosis of POTS took the rest of my fun away. Every day is a painful challenge now. I miss feeling healthy.
I feel so bad for you. I had covid in February 2022 right after my sister passed away in January. It lasted a good 2 weeks before I could return to work. Then I got the covid vaccine as a requirement for my new job in December 2022 and started having these sudden feelings of losing balance or passing out, even though I never did. I kept getting told anxiety etc. Tried multiple medications and nothing helped. I finally had to go in a leave of absence from work in August 2023 and haven’t been back. My heart races when I stand, sometimes even laying or sitting(thats probably anxiety!) and I feel bloated, weak, sometimes nauseous and generally unwell. I have a hard time going to the store and being out. Nothing is enjoyable and I feel like my life is ruined. It’s a very upsetting thing to have. You don’t ever know what each day will bring.
How are you feeling now?
I had covid 3 months ago. My resting heart rate before covid was normally 60 ish beat a minute. After covid sitting resting heart rate is 70 ish beats. When I stand i immediately jump to 105. I definitely believe it is covid related.
I literally have every symptom listed have for years!! I’ve always been told there’s nothing wrong with me I’m just lazy and eat poorly. However in the last year I’ve made a complete diet change and I still have all of these I’ve been looking into being assessed for celiac disease because my gut health has been way worse in the last 6 months. I would greatly appreciate any advice or resources to getting assessed for POTS
After battling with terrible belly issues, including reflux for 10+ years, intermittent gastroparesis, tremors, vertigo, dizziness, a heart rate that was ALL over the place, and losing over 60lbs unintentionally and TERRIBLE pain, especially when I ate or wore restrictive clothing, I pushed and pushed for answers. After seeing my primary, GI, ENT, Neurology, Psychiatry (cause you know, it’s all in my head) and finally Cardiology. As I sit here now, I’m having a hard day due to the heat, but what helped me was, after my cardiologist saw me and simply had me start with sitting with a pulse-ox on, then stand, he could see that my heart rate rose significantly. I wore a heart monitor for a week and the readings were a bit alarming, but I knew they would be. My sleeping rate was an average of 90 and my standing was over 140 and my highest was, was 172 (I was cooking dinner). He suggested exercise that was horizontal in nature, such as rowing or swimming or even just laying down while doing them. Also he wanted me to increase my salt (by a lot) and increase my water (which I already drank a lot) and placed me on a beta blocker. Since then, I have been able to eat more (rarely get hungry but force myself to eat) and gain weight. I eat a lot more snacks then I do meals, and even though it’s not ideal, it works for me. I have way less pain, tremors and dizziness now, as well as vertigo and ear ringing and my resting rate is in the 60’s and active is usually upper 70’s into the 80’s. However, now that the weather is warmer, I can feel my symptoms are harder to manage, so staying in a cool place is a must for me. I’m so sorry you feel this way, as I have 98% of the symptoms above. I would suggest trying to monitor your heart rate and try to see a cardiologist. Maybe try the water and salt increase and horizontal exercises to see if you feel a change at all.
I have all the symptoms too! I’m a young teenager and have been having problems since like 10 so I feel like doctors don’t take me too seriously because I’m just a kid that doesn’t know everything I need to know but that shouldn’t make me less accountable for my health. I want answers and I feel like I’m just now barely starting to get them. I think I have pots and I’m done with my opinions and input being discredited.
My symptoms are very much like those mentioned with many more to add to the list! Cramping of every part of my body: neck, shoulders (takes breath away), back, sides, stomach, abdomen, arms, fingers, wrists, legs, ankles, etc. Extreme swelling all over but especially in the
legs and feet. Extreme time walking at all, balance issues, feeling faint and dizzy, trouble laying down snd cramps happening then and having trouble getting up! Headaches, IBS, had migraines for 55 years old then went to just headaches just 8 months ago. I have GERD, Hiatal hernia. Am always fatigued but have trouble sleeping even with sleeping pills. Always seem to have brain fog even though I’ve never tested positive for Covid, do have 4 Covid shots because I’m 75 and felt like I should take them. Haven’t this year!
I am 75, and had my first POTS experience at 19. I always black out before I pass out, so the first time it happened, I thought I suddenly went blind. It happened to me many many times. Sometimes I would come to in an ambulance, sometimes I would be splayed out on a busy sidewalk with a crowd of people around me. It was embarrassing, and a lot of the time I really hurt myself. I had so many concussions from passing out from a standing or sitting position that I couldn’t begin to count the times, which made me afraid that I might have brain damage that could cause Alzheimer’s. Luckily, my memory is still intact at 75,
The other thing is, no Doctor or Hospital was ever able to diagnose me. Finally, after 54 years, my cousin, a nurse, told me when I was telling her about an episode said to me – “I think you have POTS – that’s what I have”. I had the test and she was right. I also have “Coat Hanger Pain” that can accompany POTS. I feel sorry for anyone with these conditions. I have to drink water constantly and take salt tablets or I can go into hypovolemic shock which ended up with me on oxygen and a respirator, so these conditions can be very serious.
I started getting dizzy spells when I was a teenager. I am now 48, and all my symptoms have gotten worse. I have been to every single kind of doctor to always be told that it’s anxiety attacks. I am a very nervous person so I did go with that at first but come on this thing is taking over my life. I miss out on so much for fear of getting dizzy. The only thing that helps these attacks when they do hit is sleep, which sometimes could be for just 1 hour to literally all day. I have had to call out of work so many times because of this issue, I have left work because of has happened at work, many times in an ambulance because people don’t understand and when I get in this mode I am completely incapacitated including slurred speech. It’s so exhausting but now I do have a little hope and I can at least go to my provider and then go to my neurologist and ask to be tested for POTS. Hopefully they can help me.
Has anyone here had bariatric surgery? My situation is that I had every (to date) variation of Covid. I actually had Covid and as soon as I was cleared, underwent a mini bypass. For a year, I was great. Then started having every symptom here. I take all kinds of vitamins and eat healthy however, as someone else mentioned, each day brings something different. Sometimes my episodes are minor and sometimes are super severe and more seizure like. My husband has been sleeved and also had Covid. He had similar symptoms but never as severe as mine. Please help.
I had bypass surgery in 2021. Then got Covid in 2022 and again in 2023. After the bypass surger (before getting covid) I would get faint, and once, blacked out and fainted while checking out at a grocery store. They couldn’t figure out why. This eventually got better, then after having covid the second time, I started getting migraines, my heart would start racing out of the blue, I get a weird pins/needles/electric feeling in the top of my right foot, muscle weakness, and worst of all, I have gained 30 pound in just 2 months despite my altered diet. I have also experienced almost every symptom listed. Glad I’ll be seeing my PCP in a few days.
I had an RNY weight loss surgery Nov 2001 and have had most of these symptoms ever since. I have been to multiple doctors and have been told there is nothing wrong or they treat me for heart burn, anxiety, thyroid which I had to have taken out due to cancer in a nodule a couple of years ago. I feel like I am pushing a boulder up hill! I am taking this information to my doctor this week and hopefully, she will begin testing for this.
I have found that methylated B12 and electrolytes help me when my heart starts to race. It goes back to normal quickly. I have Lyme and had covid a few months after I tested positive for Lyme. I have suspected MTHFR and POTS and just had a suspected episode of POTS. I do have candida overgrowth, SIBO and hypothyroidism, and adrenal insufficiency as well as eosinophilic asthma. It is exhausting. I’ve read that bariatric surgery reduced the ability to absorb B12 from food. We’ll probably discover in the future that COVID does as well.
I have had POTS symptoms (fainting being the most intrusive) since I was a teenager, as has my Mother, Grandmother, Great Aunt, Aunts, and my brother. There has also been mention of older ancestors also having symptoms. Many of us have been tested and tested to no avail. Good to finally see a likely culprit!
I have long COVID and POTS is part of that going on almost 5 years. I have all of these symptoms and it’s hard to get doctors to take it seriously.
I will say, my mother (deceased) always said she had vertigo, but was undiagnosed because she was scared of doctors. She died of a heart attack. I had to wear a heart monitor as a child, and I fainted once as a teen after getting up….I still get dizzy when I stand up, but haven’t fallen out again. My daughter told her cardiologist all of this and they determined she had POTS and we probably did, too.
I was fine one day, and when I went to stand up to go to the restroom my vision completely went blurry. I reached for my bed post that I knew should’ve been there and couldn’t find it. I finally crawled back into bed, but the ringing in my ears would get worse and worse. I finally tried to stand up after crawling to the bathroom for almost 2 full days, and blacked out and fell against the wall and cracked my head. When I called the EMT I had to crawl out of my apartment building. And sat against the wall til they got there. Cleveland Metro NEVER gave me a diagnosis even after my heart rate dropped down to 32 bpm when I was laying down and spiked up to 144 when I stood up. And after 7 days and STILL not getting diagnosed, I finally ripped off all my heart monitors and was about to rip out my IV before the nurse stopped me. I had to do my own research and found that it’s extremely prevelant in people who have had Covid, which im not aware that I’ve ever had. But now I have these crazy weird feelings that I can’t even describe, where I feel like I’m going to pass out but it’s a feeling from head down my body. I definitely feel the need to go see a specialist but I thought it would just go away on its own. But it’s definitely not and being with the heart, it’s extremely scary and I can’t afford to not work. I’m 42, with full custody of my 12 year old daughter, with no child support or help from her mother. I wouldn’t wish this on anyone! I hope there’s future developments where they can at least make a diagnosis. Because being in the hospital for a week without any kind of information other than we think you’re just extremely dehydrated, is very disparaging!
I have been diagnosed with PoTS. It took years for my doctors to determine what it was. Once I was diagnosed, I was relieved because I finally knew what I was dealing with. My Dr. was surprised by my reaction, but I was just relieved after all this time to know what was going on with me.
So I am post gastric sleeve surgery 5 years ago, I didn’t start having noticeable symptoms until 3 years ago and suddenly was hit with chest pain, back pain, I could only walk a few steps and my o2 sat would drop in mid 80’s, then my speech got to where people couldn’t understand me, extreme fatigue and I could only sleep for about 2 hours then wide awake. I had abnormal EKG and stress test which led me to a heart Cath which was normal. Everyone kept telling me and my family Dr that it was stress and anxiety(insert eye roll). My family Dr is a wonderful man and he went to great lengths to help me but was left scratching his head. I had abnormal bruising as well. Tests would come back and be somewhat off but the next step would be normal. This went on for 4 weeks and 2 days and I woke up one day and my speech was better. It bothered me so much as I work in healthcare and it was embarrassing to try to talk to patients. We tried all kinds of medicines and nothing helped any symptoms. I went to cardiology, pulmonology, ENT, and last Neurology and came out with a diagnosis of vocal cord dysfunction. Once that got better I just tried to move on with life. The dizziness, heart palpitations and extreme fatigue I just thought was normal as I am getting older. I live a busy life so I thought it was all normal. I overheard a nurse friend talking about problems she was having and starting talking with her, which led me to a Dysautonomia specialist and I got diagnosed with POTS but my problem is she puts me on medicines and the first was modafinil and it did nothing the second was midodrine(which made my cold intolerance worse)but didn’t help anything else. Now she has taken me off everything and I start a new medicine on Monday. My question is does anyone have experience with absorption issues related to gastric sleeve, if so with POTS how do you find medicines in a form your body can properly absorb? I have gotten IV fluids which have helped the next day both times, I have woke up feeling great but this is a last resort for numerous reasons. HELP . Anybody have POTS and have gastric sleeve surgery? I am just wondering if this is why medicines aren’t working for me.
I was diagnosed when I was about 24 years old I’m 29 now. It took 10 years to get the right diagnosis. Over the years I had been going to the doctor for all types of stuff. Fainting when I’d run, stand up too quickly or when I’d get too hot. My heart would beat so fast I couldn’t breathe. My heart would feel like it was going to stop. It would skip a beat then double beat super quick to accommodate it. I have really bad anxiety problems and issues with over stimulation. Headaches and blurry vision/eye pain. Wide spread nerve pain. Everything hurt to the touch. I had issues overheating sweating excessively. I start shaking profusely. I have GI problems. Acid reflux, sulfur burps. Lactose intolerant. Swelling in my legs and feet. Skin turns purple and red when I’m cold or when my blood starts pooling a lot. Chronic fatigue. Sudden bursts of energy like spastic energy. Fight or flight feelings all the time. Tinnitus. Brain fog outta no where. Muscle spasms. ECT (THERE ARE EVEN MORE SYMPTOMS comments just getting too long)
. I had gotten a billion different diagnosis that they were trying to treat and none of it was working. When I found out it was POTS syndrome causing all of it I was so relieved that I finally knew what was going on but now it’s also just as worrying too because I don’t know if I’ll ever get better..