POTS (Postural Orthostatic Tachycardia Syndrome) is often called “the invisible disease”. This reference is no accident. POTS is dificult to detect and diagnose. As a cardiologist with experience diagnosing and treating POTS Syndrome, I hope this article will remove the proverbial “invisible veil” by explaining signs and symptoms of POTS.
Orthostasis and Tachycardia (Dizziness When Standing & Fast Heart Rate)
These are the hallmark symptoms of Postural Orthostatic Tachycardia Syndrome. Orthostasis is basically a sensation of dizziness upon standing, and tachycardia is a fast heart rate. The definition often used for POTS is symptoms on standing, accompanied by an increase in heart rate of 30 beats per minute within 10 minutes of standing. Although there may be a sensation of fainting, most POTS patients don’t pass out.
To find experts in POTS around the United States check out XpertDox.
Why POTS Patients Experience Dizziness & Fast Heart Rate
Usually on standing there is an immediate shift of about ½ a liter of blood from the upper body to the lower body. There is also shift of blood out of the blood vessels in to the surrounding tissues. The problem with this is that enough blood still needs to go back to the heart and the upper body to function normally. In a normal scenario, the body responds by tightening the blood vessels and returning more blood to the heart and a slight increase in heart rate. In POTS, this response is abnormal resulting in a pooling of blood in the lower body. The heart rate increases excessively to try and counteract this, but it’s often not enough and creates the orthostatic symptoms (fast heart rate), often the source of other symptoms of POTS Syndrome.
POTS Syndrome Symptoms Cheat Sheet
Headaches
About two-thirds of POTS patients experience headaches as symptoms of POTS syndrome (Mack et al). Migraine headaches, the most intense kind, are common and bring with them additional symptoms such as nausea, a sense that the room is spinning, dizziness, and finding loud noises and bright light extremely bothersome. Coat hanger headaches, which primarily cause pain in the head and shoulders, are a highly common and troubling symptom among those diagnosed with POTS (Khurana et al). Coat hanger headaches are often worsened with standing or exercise and relieved by rest.
Stomach (Nasuea & Abdomnimal Pain) Symptoms
In addition to the symptoms of dizziness and difficulty maintaining a standing position, many POTS symptoms experience gastrointestinal symptoms such as nausea and abdominal pain. In some patients, it has been found that treatment of the POTS, leads to improvement in the stomach symptoms (Sullivan et al). A lot of POTS symptoms are attributed to a dysfunctional nervous system that prevents blood return to the upper body when standing. It has also been shown that some of the gastrointestinal symptoms in patients with orthostatic intolerance can similarly be attributed to a dysfunctional nerve supply to the stomach (Seligman et al). Other reported complaints include bloating, constipation, and diarrhea.
Chronic Pain
Chronic pain is defined as persistent pain, lasting more than 3-6 months, and may include symptoms such as the headaches and the gastrointestinal symptoms described above. Unfortunately and frustratingly, despite extensive evaluations, many chronic pain patients find no clear underlying cause. This makes it difficult to treat this symptoms. Like many other POTS syndrome symptoms, chronic pain may partly be explained by disruption of the nervous system, but is overall poorly understood (Eccleston et al).
Visualization of Four Primary POTS Symptoms
Heart Symptoms – Chest Pains, Palpitations and Shortness of Breath
Heart related symptoms are fairly common amongst POTS patients. Palpitations are often reported and although these are typically relatively harmless often a monitor will be used to evaluate them better and to rule out easily treatable problems. Chest pains are also commonly reported, although these are once again usually benign in nature. Shortness of breath and fatigue may also be reported, particularly on activity, however the pumping function of the heart is usually normal in POTS patients, although it has been reported that the heart is relatively small compared to healthy subjects.
Symptoms Related to Menstrual Cycle in Women
The majority of POTS patients are younger women. 80% of these report a worsening of their symptoms during the menstrual cycle. In addition there is a higher likelihood of gynecologic abnormalities such as ovarian cysts, dysfunctional bleeding and endometriosis (Peggs et al).
Problems Sleeping
Sleep disturbances have been well described in POTS syndrome. Symptoms include poor sleeping at night, waking up repeatedly at night, and sweating at night. POTS patients were found to have more sleep disturbances and higher levels (Bagai et al).
Brain Fog
A common POTS symptom is impairment of cognitive function. Cognitive function basically means intellectual processing. Amongst POTS syndrome patients this is often called ‘brain fog’. Almost all POTS patients experience some degree of brain fogging. Patients most commonly describe brain fog as as difficulty focusing, thinking, and communicating (Ross et al).
Dark-Red / Bluish Legs on Standing
About 50% of POTS patients have something called dependent acrocyanosis. This basically means dark red or bluish color to the legs typically on standing. The exact cause is not known. It’s usually painless and the legs continue to function as normal.
Sweating Abnormalities
Both increased and decreased sweating have been described in POTS patients. In the hyperadrenergic form of POTS there may be profuse sweating episodes.
Other Reported Symptoms
A research paper out of the Mayo Clinic in 2007 reported symptoms of 152 POTS patients that had been evaluated there (Thieben et al). Some of these are listed below, along with the percentages of patients that reported these symptoms. It must be remembered that this is only one study, although it does help our insight in to the symptoms associated with POTS.
In addition to these symptoms, there is a large list of non-specific symptoms that have been reported by POTS patients. It is difficult to know whether these are related to the POTS syndrome or other problems that exist at the same time. Ongoing research will hopefully help us to better characterize POTS Syndrome and treat its symptoms.
This is very interesting information! Here is why I feel that way. So my father in law recently had pneumonia and had a plural effusion as a result. He is a paraplegic who normally gets up at least 3 times a day with assistance from my mother in law. Now every time she try’s to get him up, he has SOB and passes out. The Drs never gave him a diagnosis or found out why this is happening. Now he refuses to get up out of bed and I am afraid of what will happen there. He has a long history but pacemaker, tube fed, has a stoma, are among some of it. I was wondering if this could be what is going on. I may mention this to my mother in law and see what his local provider says. Thanks for the info!
I’ve given up on doctors, they are rather useless if a patient doesn’t have one of a handful of conditions they see regularly, they seem to not want to investigate and discover the issue. I’m in my 20’s, so you know I’ve had many frustrating experiences to be so cynical so early in life. The doctor might explain your father-in-law’s new ailments by saying that he is still weak from the pneumonia (which is possible, he was already a sickly man and he just needs more time to return to 100%) and that blood naturally pools where gravity takes it, that’s why many people, especially as they get older start to develop swelling in their feet if they stand for a prolonged time. Gravity has an effect on everybody’s blood but there are special smooth muscles that wrap around all the veins and arteries that regulates blood flow and pressure. Now, if a person is sitting/lying down, the heart rate slows and the body is able to send blood to the brain very easily with minimal effort, then someone comes along and yanks this person into the standing position. The problem is that the body gets surprised, it was relaxed one second then the next it suddenly has to work much harder, as a healthy child the body would be able to quickly correct the sudden change, in an old or sick person the body is tired/weak so it takes more time to fix the problem that the head is suddenly much father away from the feet.
My first concern is if he is still exercising or has some kind of physical therapy while bedridden. Remember I said blood pools, if he doesn’t move he is at risk for blood clots which could travel to his heart or to his brain which can cause a heart attack or stroke.
I can’t agree with you more…I think that there is an amalgamation of reasons why. I think that there is more information and tools out there; more than doctors can keep up with. Then when we get the blanket diagnosis from doctors, or when they generalize our symptoms with the masses, we are given a bandaid fix that may not be related to the illness at all. TIME, is something that they commonly rob us of, they try to squeeze in and speak to a patient on average about 5-10 minutes. How can you diagnose anything in that timeframe? I can’t shower and shave my legs in that amount of time, and they are going to diagnose a condition on that? AS A RESULT…patients are doing their own research at home. CORRECT, we are not classically trained physicians, but what are we left to do? I had one physician tell me that at 32 I was too young to have a vitamin D deficiency. I knew that it had to be that because I’d never had cavities until after my son and somehow I started having 7 of them every 6 months. I broke my ribs, doing what I have no idea. Interesting, I went to another doctor and demanded to be tested and was at the high end of summer; I had a value of 12 ng/mL, in which the Vitamin D Council suggests the optimal is (OH) D 40-80 ng/mL and laboratories are 30-75 ng/mL. I ran my own DNA and showed that I am VDR taq +/- and VDR bsm +/- along with another couple of heterozygous and homozygous mutations that affect how D is processed. Essentially, my D was so low for so long that it did more damage, it triggered autoimmune diseases that have made my life miserable. The new doctor told me to go get 20 min of sunlight per day, but sunlight does nothing for me and my family members that are also affected. So again, they could be doing so much more with DNA, but they were never trained in understanding it so they often dismiss looking at the root causes of illnesses. And yes, just because you have DNA mutations, it doesn’t mean that you have the disease or are experiencing issues.
So, with all of this new information at our fingers, it has almost become our responsibility to biologically figuring things out because we are shelling out way too much and receiving too little in return from the medical field.
What we need to see in the future is using genetic testing to formulate custom vitamins, foods and treatment plans. This would revolutionize the body.
I am finally getting answers to my questions as to why I have been misdiagnosed for the past 30+yrs. I have had invasive back surgery., Exploratory tests,bone infusion,severe pain, swelling, migraines,loss of teeth,numbness & unable to sit,stand,walk. I have had many more unbearable times that began @21yrs.,old. Fast heart rate,low BP, dizziness, unable to sleep, hospitalized only to be more or less disquisted with prognosis!. Thank God I seen a program on TLC 5/14/18 of which expl. a small amount of POTS SYNDROME!. I Have lost my family’s love, my marriage,job & Quality of my life. No one knows how I suffer, I sit in tears & Pray every day, I will be unable to support myself very soon, but everyone thinks your suffering is in my Head!! I have seen so many Specialist s, to no avail. Thanks for anyone who may understand what I go through every day. I appreciate A Medical Provider that would advise, & explain how I could get help. God Bless Cynthia Cooke Stanek.
Cynthia, do you know the title of the show you saw on TLC recently?
I really appreciate your thoughts. Your too progressive for the Medical Community though. They are not interested in curing people.
Does anyone have suggestions on treatment for nausea and diarrhea related to POTS? I have occasional flair ups of terrible nausea/dizziness and diarrhea but can’t seem to pin point the cause.
I have a prescription for Zofran/Ondansetron. It is the smallest pill (way smaller than a tic tac) and dissolves. Super helpful when you’re nauseous. It is a lifesaver. Home remedies like peppermint and ginger help. I drink tea with one of those as the main ingredient. Aloe Vera juice is also a great home remedy. They have it at Walgreens and online (Herbal Life). I used it when I was pregnant and it was great. If it helps, these are recommendations from a nursing student and someone that has pots.
Hi! We are new to this, but a remedy we have used for ages is applesauce for diarrhea. I love that there is a place I can go to see what works for people. Wishing you all the best!
Depending of the cause of your POTS, you may want to try going dairy free and gluten free for 3 months. My POTS was caused by my autoimmune disorders. I had severe nausea and heartburn like feeling in my stomach and I could not even eat a grape amongst other symptoms. I started getting treated for POTS last September. I have seen a big difference in the way my stomach feels. I have slowly reintroduced gluten and dairy foods back in and have been stable.
Have you also experienced sharp pains in your heart?
Have you had migraines?
Hope You can answer.
DG
I have very severe migraines. I currently take a daily preventive that helps. I also have chest pains. I see the cardiologist monthly and sadly he says this is normal.
Please see a cardiologist that specialist in POTS.
My daughter was missed diagnosed for 24 years until she did the research and its conclusive that she does not have anxiety and is in treatment.
I am going to tell you that not until you find a cardiologist that specializes in POTs than you will be dismissed!! Please don’t give up!!
What preventative med do you take for migraines. My daughter has yet to find one to help her. We are currently so IV normal saline ever few days and she gets some relief.
What was the treatment its ruining my life im bedbound and never go out im 30yrs old. Sweating is the worst im soaked in my head looks like i just showed. It is awful im soaked my hair always wet as soon as i stand or clean my house any activity or simply standing im soaked. Is there treatment that has helped this?
I also have the awful sweating. I get so hot and sweat pours off my head if I do anything. It’s awful. The doctors and myself have not found anything that helps.
I developed POTS and MCAS after years of fighting Lyme. I eat a vegan diet , so no dairy and no grains through meat as well as a gluten free diet for a long while. I find when I’m really struggling, a pinch of pink Himalayan salt on my tongue allowed to dissolve helps and I take quercetin every morning. I notice when I skip the quercetin. I also walk everyday and notice if I skip the walk. I think it is rebuilding my heart. After too many years of passing out walking up the steps or jumping out of bed, I feel hope. I was strict and kept a journal of every activity and food for nearly a year as well as a scale of how I was feeling and symptoms. I was able to create a list of main triggers. It was amazing really – I can tell you excess citrus and I have to urinate with extreme urgency. Corn meant immediate full body swelling. etc…. it seemed each one could be traced to its own reaction. For me – grains – especially corn was an issue and corn is in everything so it seemed like all food but it was the corn. I also have terrible chemical sensitivity – the worst being dryer sheets!
Keeping the log was exhaustive work, but it was the key to me turning my life around after not finding the help I needed in the medical community. I wish everyone struggling the best! And hopefully sharing this will help you find the path that works for you.
Gluten and lactose intolerance are often linked to PoTS it may be worth you googling low Fodmap diet.
What kind of doctor can diagnose this? PCP or specialist? My daughter has exhibited almost all of these symptoms for years and we’ve been to so many doctors. One even told me that it’s all in her head. Who do I see to get her tested and what kind of testing should I expect? Please help.
My friend was diagnosed by a neurologist, but I would think a cardiologist would also have to be involved.
I was diagnosed by a neurologist. First one sent me to a different one that had the Tilt Table for testing. So far, I have not seen a cardiologist but it has only been about a month since I was diagnosed.
JESS are you weak when u have you “spells”?
To diagnose Pots Syndrome a Cardiologist can perform a Tilt Test. Only certain hospitals have access to a Tilt Table.
My cardiologist referred me to an electro-physiologist who ordered a tilt table test to confirm the POTS diagnosis. I also have SVT but I don’t know if they generally go together or not. I pray your daughter will get an accurate diagnosis and treatment plan.
My daughter was diagnosed by a cardiologist after she had a table tilt test. But pcp can order the table tilt test.
My daughter was diagnosed by her primary care physician. She didn’t even use the tilt table, just had my daughter sit/stand laydown/stand and measured heart rate and blood pressure. It helped that my daughter’s school nurse had been checking/logging her heart rate and bp every time she didn’t feel well at school.
My son was diagnosed by a cardiologist.
I know too well how you feel. I spent years and tons of money on every specialist for my daughter without results or answers. Our God send was an adolescent medicine specialist. She nailed it on our first visit. I will tell you that the ‘recommendation’ is salt and a lot of water. Common sense dictates that if you drink that much water, you flush out other essential minerals and vitamins, and salt upsets an already upset stomach. We have found that the Electro mix by Emerg n C (available on line at Walmart – best price, free shipping- in a green box) gives her the electrolytes and the minerals she’s losing. Most electrolytes have a lot of sugar or worse, artificial sweeteners. And considering how much she has to drink, NO WAY. We have also found the ‘fizzy sticks’ drink mix from Arbonne give her more energy, again without the sugar / artificial sweetener. And it has things like green tea, blend of vitamin b’s, chromium, sodium, and potassium (salt) all plant derived. these two things are essential for her. she can not get through the day without both.
What were your daughters symptoms? My 14 year old son has been experiencing intermittent intense nausea for 7 weeks. He is being treated for a bacterial infection and also has PANS. Our doc believes the PANS is causing the anxiety and the nausea. I’m very curious about POTS as he has prior Lyme exposure. Where is your adolescent doc located? What tests did he do to confirm diagnosis? Other than the electrolyte and mineral replacement are you doing anything else for treatment? Sorry for all the questIons. Hope you can help!
She really needs to make sure she is taking a multivitamin that is methylated . Plexus has a good one called X-factor. It helps you absorb vitamins and has helped me out a lot. I also like the Mega-X as it helps with my heart.
One that specializes in P OTS cardiologist is the best please don’t give up I’ve been taking my daughter to doctors since 13 and for the first time we found some hope in us and treatment. It took no less than three minutes To come to the conclusion and she seeking medical help.
Go to a doctor that specializes in POTS. It’s the only way you will get diagnosed correctly.
I was diagnosed by my OBGYN after she monitored my heart with a holter monitor for 24 hours. also along with my long list of other symptoms that are spot on to these listed (abnormal menstraul cycle, bloating, fainting, dizziness, nausea, palpitations, tremors, anxious and agitated, foggy headed and lack of concentration ).
We have been to neuro, rheumatology, oral maxo facial specialists and endocrinology. None of them tested or diagnosed my daughter for at year. I finally took her to children’s heart institute and within 3 hours she was diagnosed with ehlers Danlos syndrome and POTS.
Definately find a cardiologist that specializes in POTS diagnoses.
So what did they recommend ? As I have both.
My 16 year old son has PRECORDIAL Syndrome. Any suggestions about what causes this & how to treat it?
**PRECORDIAL CATCH SYNDROME** Left out the “Catch” in original comment
Who can diganose this? My daughter has all the symptons described an only ten.She had been to cardio an wore heart monitor an to nuero with no answers.
Electrophysiologist, cardiologist or Neurologist. Your primary care doctor can do a “poor man’s tilt table test.” My primary care doctor caught it for me. They check your heart rate and blood pressure lying down, sitting and standing.
Only go to a doctor that specializes in POTS for this disease.
I am 62 years old and have passed out since I was 9. I went to different doctors and they ran all kinds of test. Never could diagnose. It took my 40 plus years to be diagnosed. My cardiologist suggested the table tilt test and I finally got a diagnoses.
Some doctors have never even heard of the table tilt test.
I am in my 70’s and have been coping with Pot’s disease for many years. My biggest problem amongst many is I can not sleep. Does anyone have a name of a product that they may be using that works for them. I have tried sleeping pills and if lucky I sleep 3 hours and then I am wide awake the rest of the night. Have also been using a relation pill as well, but does not help. If anyone has any advice, I would surely appreciate hearing from you.
Thank you.
Andrea
Hi Andrea , I use Essential oils for sleep and they help me. I use lavender and serenity gel caps and oil. Serenity is a DōTERRA product but I would suggest to try using oils if sleeping stuff doesn’t help you. I also lay awake most of the night without them.
Sometimes also with them but they do help.
Marijuana is your best bet to help with sleep
Try tart organic cherry juice. Not black cherry juice. Helps me and I take it 45 minutes before bed.
Hi, I am 65 and have the sleep disorder connected with Fibromyalgia and EDS. I have EDS Classic form. Taking the usual cocktail of Melatonin, Valerian Root, OTC Sleep aid and other supplements helps. But, the best thing of all is 5 or more minutes a day of low impact aerobic on my NUstep or deep water running for an hour or so. I actually do aerobics up to 45min a day but, it took a long time to work up to that level. I also sometimes use deep breathing exercises to relax and fall asleep but mostly my sleep disorder cause frequent arousals. Hope you get some help soon!
Quite a few of the signs and symptoms of POTS also overlap with Primary Hyperparathyroidism.
My 16 year olddaughter was recently diagnosed and put on Toprol beta blocker. It was increased from 12.5 to 25 mg. The first night she had chest tightness and trouble breathing, it aggravated her asthma. Now she stopped and headaches are back up to a 10 on pain scale. Would salt tablets be helpful?
Not for shortness of breath. This is common with many Pots patients. I am also asthmatic and beta blockers and asthma don’t mix well. You may want to speak with her doctor. I am currently on a calcium channel blocker. I loved my beta blocker, but I couldn’t breathe.
My daughter is on Midodrine for POTS. It’s been a miracle! I don’t know how it mixes with asthma though.
I have asthma.. Midodrine seems to help and I haven’t noticed it playing with my asthma since I started taking it. I have pots and eds also gastroparesis.. My 13 yr old daughter was dxed with eds mcas and autonomic dysfunction.. Symptoms of pots but so far Drs haven’t been able to catch it on holter yet.
Sounds like mast cell activation syndrome..
And if so beta blockers are contraindicated…
Hey some of those same symptoms are for adrenal failure. I would make sure I had my adrenals checked. That’s an easy test , and if that’s a problem all you need are adrenals from an animal. They use the tilt test for that also. I’d rather have that then Pots !!! Also you could have more then one thing going on. I’d listen to Doug Kaughman “Know The Cause” we all have a fungus problem some worse then others. Hope this helps. He helps me. Good health to you all. If you have The Lord and your health your way ahead of the game. Trish
Hey Trish
My Girl Friend has had several episodes over the past month: tightness in chest, warming sensation in heart, numbing of hands/legs, rapid heart rate (140 resting) and (190 excersize induced) Nausea at times and anxiety as a result from these daily feelings. She was prescribed Naderol once per night at bedtime, do you have any suggestions on home remedies or advice as to help cope with this? She struggles to function at times throughout the day and I want her to suffer as little as possible. Thank you in advance,
Mike
Mike,
I’ve had the same symptoms as your girlfriend as well as gastroparesis, a GI disorder, severe fatigue, fainting, and severe trembling following fainting episodes. I have a cardiologist and neurologist. I take Metoprolol which stablizes my heart rate and Zoloft which has mostly eliminated fainting episodes. I use Zofran for nausea and Librax that relaxes the stomach muscles, both are only taken as needed. I’m 90% better with medication though I can have an infrequent episode, but they are few and far between. Usually after an episode I have anxiety for a couple of days fearing another episode, and I take Xanax when I need anxiety relief. I was also struggling to function during the day, but now I’m able to function normally and even enjoy moderate exercise. I also practice deep breathing and mindfulness techniques to reduce anxiety and it improves my general well-being. Your girlfriend will improve with the right treatment.
Did you know that your did you know fact is wrong?
Has anyone ever pass out while sitting down? I was driving the other day and started feeling dizzy and lightheaded and like I do Everytime I passing.
I actually have this problem. I have narcolepsy so, at first, the Dr.’s thought it was that. When I asked them if narcolepsy is situational and lasts for 30+ minutes, they all agreed that the lengthy, situational episodes are not narcolepsy, but no one can tell me what it is.
Yes only once. Hopefully never again.
Hi , I am 52 and I was diagnosed with Severe Clinical Depression, PTSD, Anxiety, OCD snd I also have high Blood Pressure, IBS and am Anemic which as you may know causes a lot of problems for me. In the past year I have started having these symptoms, Feeling lighted headed, fainting and vomiting while I was passed out, stomach cramps and tightening of my shoulders, when I call rescue and they check my vitals they say they they are all normal and also my blood pressure has been higher than than usual it’s usually high but not as high as it’s been lately can these symptoms be related to POTS?
Im pretty sure they can. Im no expert as im 13 but i have the same diagnosis as you with the anemia and depression and many POTS diagnosed people i know deal with those same symptoms
I was told I have POTS by a cardiologist, but my BP bottoms out and my heart rate sky rockets. Is that normal? My BP remains so low that I had to be put on fludrocortisone. I also have atrial tachycardia (a-fib & flutter), murmur & venous insufficiency.Years ago I had a tilt table test & can only recall being told that I had small & large fiber neuropathy. Anyway, I can’t even climb stairs w/o getting all woozy, nauseous, sweaty, and heart flipping out, pounding through my chest, clenching and squeezing. Is that normal for POTS?
I’m 13 years old and just got diagnosed with pots syndrome. I can tell you that it’s the scariest thing when these episodes happen . I have every symptom on this website and it’s very informational . I saw the cardiologist a year ago and they just told me to drink more water, a year later I’m still having these problems so I went to Deborah ER, they diagnosed me within two and a half hours , when I was on the bag of IV I found that most helpful. It was cold but it made me feel a lot better for the time period . I’m seeing the cardiologist again next week so I may get on medications and start the treatment process . Never give up and keep fighting . ♥️
Does anybody have chronic pain in there arms and shoulders with there pots
Hi Carlos,
There’s a lot of overlapping between POTS and various forms of EDS (especially classic and hypermobile). And they’re not mutually exclusive, so it could be a good idea to have a look at that, too. Look up the Ehlers Danlos Society.
Yes, Can’t get my hair combed
Im a 13 year old girl and i fit all of the syptoms except one. The most severe ones for me is dizziness and sleeping problems. My mom says its just anemia and insomnia but my friend who was diagnosed with pots has the same problems as me and says i should get checked for it.