Unfortunately and frustratingly there is no one clear cause of POTS Syndrome. In the following section we will discuss causes of POTS. Older people with POTS will have it due to another disorder such as diabetes or other condition. It is known as secondary POTS in that case, because it is secondary to something else. Younger adults and children will most likely have a primary form of POTS.
Primary Causes of POTS
Mast Cell Disorders
Mast cells are cells of the immune system. When someone with an allergy touches something they are allergic to, there is redness and itching of the area touched. This is partly due to mast cells coming to the area and releasing tiny chemical containing granules in to the area. Flushing episodes with light-headedness, nausea, stomach cramping and headache are well described in POTS. In some cases of POTS with these symptoms, treatment directed towards preventing triggering of mast cells, or preventing the actions of the released chemicals may be helpful (Shibao et al)
The symptoms of orthostasis and tachycardia in POTS have been attributed to pooling of blood in the legs. This means that blood that is meant to get back to the heart and the upper body, stays in the legs and leads to the symptoms of dizziness. The heart rate increases in order to try and pump more blood to make up for this. In normal subjects, tightening of the vessels in an attempt to pump blood back to the heart prevents the pooling of blood in the lower extremities. This tightening of the vessels is caused by signals from nerves on the vessels. In POTS there may be loss of the nerve supply to the vessels preventing them from functioning normally (Jacob et al).
Also known as nor-adrenaline, nor-epinephrine is an excitatory transmitter typically produced in response to stress. Interestingly, and as discussed many times in this article, even standing up can be a stress, but normally our bodies can handle that by activating reflex reactions. In POTS, the normal reflexes that make standing tolerable may be dysfunctional.
In the less common hyperadrenergic POTS there is excess levels of nor-epinephrine seen on standing. Hyperadrenergic POTS treatment is targeted towards preventing release of these transmitters or prevention of their action.
There is also a rare form of POTS syndrome attributed to a genetic abnormality causing failure of clearance of the nerve-transmitters meaning higher levels of these, possibly leading to the symptoms of the dizziness and increased heart rate on standing (Shannon et al).
Nitric oxide is a substance in the blood that helps to regulate the function of the cardiovascular system. Some studies have suggested that in POTS, the interaction of nitric oxide with the autonomic nervous system may be dysfunctional and related to symptoms (Gamboa et al).
POTS shares a lot in common with chronic fatigue disorders, and may lead to high levels of inactivity with associated deconditioning. Also, physical deconditioning may lead to a smaller heart size, which may lead to decreased cardiac output. It’s difficult to know whether deconditioning leads to POTS, or POTS leads to deconditioning, however it’s likely a combination of both. Regardless, there is association between POTS, deconditioning and decreased heart size that underscores the importance of maintaining physical activity in POTS. (Fu et al)
Around 1/3rd of POTS patients report a viral kind of infection before the onset of P.O.T.S Syndrome symptoms (Thieben et al)(Kimpinski et al). The exact way in which a virus leads to this is not known at this time. It may be by directly damaging the nervous system or by stimulating the production of antibodies that damage the nervous system.
Secondary Causes of POTS
The adrenal gland is a gland that sits on the kidney and produces the stress hormone cortisol and other important hormones that help to maintain adequate salt and water in the body. This is important in maintaining blood pressure. In adrenal insufficiency the lack of these hormones can lead to orthostatic symptoms and a low blood pressure. In addition there is weakness and fatigue and many of the other symptoms associated with POTS.
Anemia can often mimic the symptoms seen in POTS. Folic acid and vitamin B12 deficiencies that lead to anemia may also be considered. Typically simple blood tests can rule these out. There are some POTS patients however that may have a low number of blood cells, which leads to anemia, despite normal standard testing (Raj et al).
In some case of POTS, there has been underlying autoimmune disorders such as lupus suspected of causing the symptoms. There have also been reports of POTS associated with the viral illness triggered Guillain-Barre syndrome, a syndrome that attacks the nerves supplying the muscles causing weakness. In addition there are a number of rarer autoimmune conditions where antibodies attack the autonomic nervous system (POTS is attributed to autonomic dysfunction) and cause POTS syndrome.
Ehlers-Danlos syndrome is an inherited disorder that affects connective tissues. These are the tissues found in the skin, the blood vessels, and joints and allow those tissues to have strength and elasticity. So as you can imagine, people with Ehlers-Danlos syndrome have flexible joints and fragile skin. Ehlers-Danlos syndrome is more common amongst POTS patients than the general population (Wallman et al). It has been suggested that this is due to weakness in the blood vessels leading to pooling of blood in the lower extremities, a mechanism that has been well associated with the POTS syndrome (Rowe et al). It’s therefore reasonable to check for features of Ehlers-Danlos in those presenting with POTS.
Gastric Bypass Surgery
Gastric bypass surgery is a popular treatment for morbid obesity. As more and more of these procedures have been performed it has been recognized that some patients may develop orthostatic intolerance following the surgery (Billakanty et al).
Lyme disease is an illness develops after a particular tick bite. It affects many organ systems including the nerves, the heart and the muscles. Usually it responds to antibiotics, however some patients develop what is known as post Lyme disease syndrome of fatigue, pain and mental clouding. Some patients with Lyme disease and the post Lyme disease syndrome are noted to suffer from POTS syndrome. Recognizing POTS syndrome in these patients is important because the appropriate treatment of POTS syndrome may result in improvement in symptoms and quality of life (Kanjwal et al).
Spinal cord injury is well known to be associated with autonomic dysfunction (Karlsson). The complications of acute spinal injury may even be life threatening with problems such as uncontrolled high blood pressure. The whole of the autonomic system function may be affected with complications including bladder and bowel control, renal and sexual function. Some of the effects may be worse in the early phase after injury and a new balance achieved a few months after the injury. In addition, structural brain disorders such as the Chiari malformation may be associated with POTS (Prilipko et al). In that malformation the brain is displaced downwards leading to compression.
The hyperadrenergic form of POTS is partly caused by elevated levels of the excitatory nerve transmitter nor-epinephrine. The tumor called pheochromocytoma produces excess levels of this transmitter and can be associated with flushing, elevated blood pressure, palpitations and tachycardia. These symptoms are similar to some of the changes seen in hyperadrenergic POTS. There are other rare tumors that may secrete factors that can lead to autonomic dysfunction such as neuroblastoma, and paraganglioma.
As noted in the section above, abnormality in nor-epinephrine, the stimulatory transmitter has been implicated in POTS. Vitamin B12 is known to be critical to the functioning of the nervous system including the normal chemical pathways involving nor-epinephrine, and nerve tissue integrity. Vitamin B12 deficiency in patients with POTS may lead to nervous system dysfunction (Oner et al).
Hello all, I was wondering if someone that had surgery approximately 3 years ago can have POTS diagnosed in then. Can the pooling of blood be in the lower part of the body, for instance in the their foot? Also, could the surgeon who worked on the foot had knicker and nerve or muscle that could have signs of POTS?
Thank for you response.
Is there any correlation between POTS and rheumatological disease and fibromyalgia. Note: I have RA, fibromyalgia and spondylitis of the spine. I’m about to have a morphine pump put in my stomach, Permenantly so I may function day to day. I’m basically tearing up the internet looking for answers before this surgery.
Yes, I was diagnosed with POTS 2 months ago and I have been researching this extensively. Many with POTS have Fibromyalgia (as do I) and I believe some have spondylitis, but I’m not certain of that. I certainly hope you improve. Sounds like it’s been a rough go for you.
Robin, Do you mind if I ask you some questions? 1) What were your symptoms. 2) What type of Dr diagnosed you. Did they specialize in POTS? 3) What tests did they do on you to diagnose it. My husband (65) has been ill for 1-1/2 yrs and we’ve yet received a diagnosis of anything. He has a lot of the symptoms of POTS, but never heard of POTS before this article. We live in Florida and hard to find good Dr’s. Was hoping and praying when he turned 65 we could go to Mayo in Jacksonville, FL but was denied stating they aren’t accepting anymore Medicare patients this year and next year. So frustrating. Thank you.
Laura Paugh says
You can look up Dct. David Klein….he’s in Longwood, FL, has a radio show every Sunday afternoon. He specializes in correcting misdiagnosis and helping people get to the root of their health issues and back to functioning level. I didn’t get to see him yet but I listened to him most Sundays and learned a lot and you call in or text into the show and get answers.
Check house and workplace of your husband for MOLD!
Christina Baldivino says
I also have POTS, Fibro etc. Life is sucking right now
I have a very severe version of POTS, in that every time I stand I almost black out – Is there any cure please?
About a year ago
I could barely stand without getting symptoms and passing out. Once diagonosed with POTS I was put into a cardiac rehab program where I literally started with 10 minutes on a recumbent bike 3 days a week. Since I have increased my workouts to 40mins 5x week and have a variety of activities I can do. Now almost a year later I am having little to no symptoms and can function normally. This has come with many other lifestyle changes but I believe exercise is the best “cure” for managing this disorder. There is no quick solution start small and build yourself up. You will feel stronger everyday.
Sarah Frederick says
Do you still exercise? Are your symptoms still less! It was 10 years before I was diagnosed. I was just put on the exercise plan.
Laura Paugh says
I’m on this journey too but I know that Sleep, elevating legs, avoiding caffeine , drinking lots of water, taking pink Himalayan salt or Celtic Sea Salt before or with my water helps a lot….now I just need to increase exercise.
Maria Nazario says
Does anybody know if people with autoimmune thyroid disease suffer from POTS? I have Hashimotos thyroiditis. I’m medicated for my thyroid, blood pressure, and mood swings caused by my disease. The symptom that I’ve had off and on for awhile is dizziness. Fatigue, nausea, headache, stomach aches, exercise intolerance, fogginess, and other symptoms are common with thyroid disease. The one that worries me the most is the dizziness. I stand up and get so dizzy and lightheaded that my legs lose their strength and later I feel nauseous, fatigued, and with brain fog. It doesn’t happen always though. It happens once in a while then leaves and then it begins again. Can someone tell me if I should go get checked and if it is common for people with Hashimotos to have POTS?
Yes, thyroid issues can cause POTS
This is an excellent website. We have been putting the pieces of the puzzle together. Many pediatric visits, dermatologist for hyperhydrosis, rheumatologist and neurologist visits. Lots of labs.
My child has sweating, feet pain and itching, thirst, anxiety and stress, dizzy and blurred vision, Raynaud symptoms, frequent headaches. Very miserable. Autonomic testing was ordered by her neurogist. Tilt table increased her headache, fingers and toe pain and she passed out. So we expect to be now on to the hunt for the source of this body response.
Based on this website my daughter is doing a lot of things that are on course. Hydrating, exercise, schedule. We are told to increase salt ASAP. Which adding this and magnesium, B vitamins and salt were earlier recommendations.
This autonomic testing is key. Lots of time getting this figured out. Medical community was trying but some doctors put in more time and thought how best to guide next steps. Health plan was able to provide a nurse case manager as we wanted extra help to find the cause and effective treatment.
This website is very helpful. School counselor mentioned POTS after I explained what happened at testing. Entered that key word internet search brought me right to it. Comprehensive overview. Will help as we move forward. More puzzle pieces.
Be your own advocate. Learn. Keep seeking answers and effective treatment. Stay positive. It all helps.
Kerry, you said pediatric visits. How old is your child? My daughter is 8 and her cardiologist at the Children’s Hospital in Minneapolis diagnosed her with POTS. He said she is the youngest patient he has seen with it. I am debating on getting a second opinion because the treatment plan he has us on has not been helping and it has been around 6 months…
My daughter was seen by Endocrinology today, she’s 13. POTS was mentioned due to her dizziness, headaches, and irritability. She also has an enlarged thyroid, so we are on to more test and either Cardiology or Neurology.
My daughter was diagnosed at 6 years by Dr. Abdullah in Herndon, VA. Youngest patient. She’s 14 now and still has it.
Patricia Layer says
Check your house for mold.
Hi – have you had your child tested for Chiari Malformation? She would need an MRI.
POTS most often occurs in women around the ages of 13-15, however people can show signs of it very early in life. I have POTS among several other things including anxiety, depression, and ADHD. When I was little I had signs of POTS but it was always excused believing I had just gotten up too fast. However as I grew up things started getting worse like not being able to be active and exercise for long periods without feeling like I has about to pass out and hardly being able to breathe, I was in elementary school. Things didn’t change and when I reached middle school things got worse. My family thought it was exercise induced asthma since my mom had had it when she was little, so I was given an inhaler. It did not help one bit, so I was taken to a doctor to run some tests, the tests literally involved me running for several minutes while a machine I was hooked up tracked my heart rate and everything. The results came back and they said I was normal just a little unfit, (a middle schooler who had gym for 45 minutes and running to all her classes throughout the school every day.) As time went on things got worse and worse, somethings as little as stretching my arms above my head could make my vision go black for a few seconds. When I was in was in High school I finally decided to do a little research of my own, and I stumbled upon POTS. I talked to my family about what I found to which my family replied with “you just got up too fast.” Until one day when I was at school I suddenly just collapsed, luckily I didn’t hit my head on the teacher’s desk which was only inches from my head. I quickly got up and shrugged it off so I wouldn’t worry my teacher, but when I told my family about it they immediately set an appointment to see some specialists. I had a brain scan and my heart looked at, all the results came back as normal, however I still went to talk to a cardiologist to discuss if it could be something else. When I mentioned my research and how POTS’ symptoms were similar to what I was experiencing they said that it was a strong possibility. Later it was definitively diagnosed as POTS after I took a tilt table test, (a tilt table test consists of laying down on a table and being securely strapped on and getting hooked up to a machine that will take your blood pressure every two minutes while you are laying horizontally at a 0 degree angle, after your blood pressure is taken a few times the table will be moved upright to an 80 degree angle, this is because this angle is basically like kryptonite to people with POTS, your blood pressure will be taken a few times at that 80 degree angle and then the test is over.) It’s been a few years since then and it hasn’t been easy, however it has been easier to manage it. I take a medicine called Midodrine and salt tablets in the morning, instead of the average 64 oz of water each day I’m supposed to drink 96 oz at least. Some people grow out of POTS and some don’t, but even if someone doesn’t grow out of it, POTS is manageable. It may take time to find the right regimen, but it really will help in the long run. Hope this helps!!!
Have been having nausea and dizziness for 6 months. It did go away for a time but this morning after eating tangerines returned. (acid?) Drink ginger in water.
Take Losartin and Thyroid, meds
Have glaucoma and taking Lumigen. I’ve tried useing Losartin a half pill twice a day 25 and 25 before bed which seemed to help. Also taking large doses of b-12, moderate calcium, boron, magnesium, tumeric, Areds, ashwaghanda, D3
.Rub my feet with vicks morning and night, nassage feet and ankles as I have an ankle injury. Sleep with legs propped up and as if in a standing position against a pillow because I get cramping in feet. I feel that circulation in legs might be an issue so have been using a bike at the YMCA, soak in a hot tub before using it. Do walk briskly, but do not stand still as I don’t like to stand. Don’t mind walking or using the bike at the Y.
Do feel my heart beating especially when I lie on my left side at nite.
Will be seeing my primary at the end of the month, possibly for heart moniter? Don’t know but will keep a diary of food intake, exercise and all symptoms for a few weeks before seeing him.
Have excessive urination but I do drink a lot of fluids, ginger water, tea, coffee, cranberry juices etc.
Is there anything I should do before seeing my new primary. (I moved from the east of the country to the west ) and left my excellent physicans behind 3 years ago after hurricane Sandy ruined my home. Having a harder time finding a physician to replace them. The cardiologist here retired.
anyone with CFIDS and POTS? can’t exercise/movement, causes MORE intense symptoms. very hard taking care of oneself. :>(
Andrea Reid says
My 17 year old daughter was just diagnosed with POTS and has a mountain trip coming up in about a month. Will POTS symptoms worsen at higher elevations?
Andrea Reid says
My daughter was recently diagnosed with POTS. She has an upcoming mountain trip in a month. Will POTS symptoms worsen at higher elevations?
I hope your daughter is feeling better; she has had her trip by now, I hope all was well. Your question is interesting to me, our daughter at 19 was diagnosed with POTS. We have noticed when she goes to sea level locations her symptoms seem to lessen, or she has more better days, than bad. I would be curious to see if there is any study or science behind that thought. God Bless.
Hi, I just got diagnosed with POTS. One thing I’ve been noticing for the past year, before being diagnosed, is that an increase in altitude makes me very symptomatic. After acclimating for an hour or so, I feel better. It’s the transition that is rough.
I have had the same with altitude and is the first I’ve heard someone else say this. This is good for me to hear.
I have been diagnosed with Stage 3+ of Hyperadrenergic POTS. Does anybody have any information for me that may be helpful? I am having a hard time finding any information with this less common type of POTS.
I have been taking hydomorphone for 3 1/2 years for chronic post cancer nerve pain. I’m very sensitive to drugs and had to come down to 2 mg every 3 to 4 hours. I also have some autonomic nervous sys damage in my neck and face from the cancer which is gone but the Damage is done. Can hydomorphone and orthostatic dysregulation cause pots. I have many of the symptoms.
I am so thankful for this website I’ve had pots since I was 13 I’m now 23 didn’t get diagnosed correctly till I was 18. I would have an episose almost every night going blind, deaf, and paralyzed with my heart pounding out my chest. The older I get the worse it seems my pots is getting its starting to affect my everyday life I can’t even parent the way id like to or work. I used to take midodrine which helped when I was younger a little bit but it doesn’t seem to help much now. I hope there’s a cure in the near future.
You may want to check on whether some of those systems are actually related to Anxiety (if you haven’t already), not just the POTS. You may have it and not really know that you do because they are so ‘physical’.
Drink lots of electrolytes. I use to drink Gatorade but now I drink pedialyte it works better and I can drink less of it. Propanollo is what help my heart rate. Everyone is different so you have to figure out what works best for you.
There is a cluster of three related conditions: Mast Cell Activation Syndrome (MCAS), Ehlers Danos Syndrome and POTS. Researchers are finding that the underlying pathogen that can contribute to these three related conditions is bartonella. This bacteria reduces the efficiency of the immune system so other opportunistic pathogens (virus, parasites, protozoa) can take hold. Then many chronic physical and mental conditions can manifest.
I have noticed that no one mentions tremors with pots. I have had the ttt test and it was positive. When I stand up and walk a few feet I start to have severe tremors, so hard I will fall unless holding myself up on a strong place. Have fallen in driveway just getting out of the car. Had a bad Secope episode. In hospital for both. Does anyone else have these tremors? It seems to be one side of my body is like an earthquake.
Krista Sparks says
Tremors were one of my first signs. I was having a hard time writing on a white board in my classroom. Then I started with tachycardia and dizziness when standing for just a few minutes. Had to leave teaching.
Hi I was diagnosed with h pylori and Blastocystis. I have now had these for 5yrs. 2 yrs ago I started suffering with POTS and mast cell activation. I can’t heko but feel the infection with Parasites has caused this. I recently listened to a pod cast from a doctor who has been researching this for 20yrs and he said that people who get sick with blasto have a certain gene that why not everyone does. Makes sense, mast cell is also a gene thing. I hope more research goes into this.
Isn’t H Pylori curable with antibiotics?
Oh that’s so interesting. I to have had h pylori and blasto (although both gone now). My health deteriorated around this time. Just being tested for POTS now..
I sustained a head injury which resulted in an sub arachnoid brain haemorrhage. The injury was neglected and after 7/12 when it was diagnosed by mri it was managed conservatively. However the symptoms that I continue to induce since the accident continue and remain relatively unchanged these include Headaches / migraine, hypersensitive to light, sound and movement, dizziness, blurred vision, nausea & vomiting, chronic pain, shortness of breath, insomnia, panic attacks, short term memory loss. Feelings that there’s no logic to my thought process and often I don’t process information correctly. Amongst other symptoms. However I have been struggling with these symptoms which unfortunately are not mild. But severely debilitating.
Prior to the injury I was working full time and extremely active, running, dancing, walking & hiking. No I struggle with activities of daily living and I feel like I’m floundering for answers. My GP made the suggestion of POT’s
Do you know if there is any correlation between POT’s and head injuries?
I have stage 3 adrenal fatigue and now think I have pots. Nothing has worked for my fatigue but the dizziness is awful. Can you have high blood pressure and pots?
Beth Krogstie says
Go to the Dysautonomia International website (Dysautonomiainternational.org) POTS and several related disorders fall under the category of Dysautonomia. This is a good starting point from which to research the overlapping conditions. I also like the way things are explained on the United Kingdom’s POTS site (www.potsuk.org/diagnosis). Hope it helps!
I would like to be on this site
I was just told I have pots ? I don’t understand it ruins my life everyday?
Lorena Flores says
I was recently diagnosed with celiac disease and H pylori. Since I started on gluten-free diet I believe to have POTS symptoms, but have not been diagnosed yet. This is scary because I can’t even go to the mall for long periods of time otherwise I start feeling sick. Does anyone know if this started because of celiac or H pylori?
Read this article it relates to what you are having. Let me know when your done reading it because I got more details. https://www.medhelp.org/posts/Heart-Rhythm/Tachycardia-Mystery—Not-a-mystery-anymore-Read-this-/show/1467442
Can Parkinson cause Pots
Daughter was diagnosed with POTS. She is 15. She had a tilt table test. She has dizziness, near fainting, postural tachycardia, fatigue, muscle pain, shortness of breath, nausea, tremors, and more. Specialists have told us to increase fluid, salt, and exercise.
One cardiologist says heart is healthy just by looking at EKG and sonogram. They also say her symptoms are caused by her diet and to take iron supplement, but she is not anemic. Does that sound right to anyone? That is the first time a specialist has told us this. I know many physicians are not well informed on this condition. Any advice would be appreciated.
I would highly recommend that you research treating POTS with alternative medicine, holistic medicine, or naturally. In addition to going to her normal doctor(s). Lots of really good suggestions that you can do to improve her condition(s) especially since she was recently diagnosed. Dietary changes could be extremely helpful. I would also recommend the Wahl’s protocol, a book on amazon that would be really helpful in guiding the dietary changes. Dr. Wahl cured her second progressive MS and her protocol is helping so many people with a variety health issues. Her protocol cured my daughter of pituitary failure, but you have to be willing to change your diet. In our case, changing her diet gave my daughter her life back. Gluten and dairy free for starters and not just kind of, ALL gluten and dairy. No processed foods, soda, or artificial sweeteners. Definitely low carbs, but lot of vegetables. In your research, you’ll find suggestions for exercise even if she has trouble standing they have suggestions for that as well https://www.naturalnews.com/032763_POTS_natural_remedies.html Good luck to you both!
Sounds like classic lyme disease, but you must find a lyme specialist,,,because other md’s not up on lyme infections
I have a few questions concerning a tentative diagnosis of POTS. I have been put on sodium tablets, Propranolol, and Fludrocortizone. Sometimes, they make my symptoms virtually disappear. At other times, though, I continue to experience dizziness, weakness, fatigue, joint pain, etc. My heart rate and blood pressure remain stable due to the beta blocker, but I become extremely symptomatic in other areas. For example, my heart rate will remain at a nice, normal 60 on Propranolol, increase briefly to 75 upon standing, and then come right back down. BUT, all the while my body is telling a different story–I’m experiencing dizziness, fatigue, and sudden flushing, and I think I could pass out. And, although the actual heart rate remains stable, I can feel it pounding forcefully–slowly, but insistently. Does this make sense? My question, then, is this: How is POTS detected and treated if one is on beta blockers? Should the Propranolol be eliminating the feelings of faintness even as it lowers heart rate? Or is that aspect of POTS caused by a different mechanism? If the Propranolol is lowering my heart rate but not eliminating the general malaise, where do I go from here? Can anyone offer any insights?
Carlita Sharp says
I thought I’d share my story. I have found out through my spouse getting a terminal diagnosis with MSA, and then my own diagnosis with Orthostatic hypotension), that all of the autonomic diagnosis’s have no known cause, and no known cure. So when I was being tested, my doctors literally referred me to everyone. I have been tested for almost everything, I think. I had extreme exhaustion, weight loss, and I was always hot or cold. I had the low bp that dropped when I stood up, and my heart rate increased. They found a hypertrophic adrenal gland, and tested my cortisol, and other adrenal hormones. I had a carotid artery ultrasound that found thyroid nodules. It turned out to be Papillary thyroid cancer. After treating it, my bp came up, and I’m now diagnosed with POTS. I have made several thyroid cancer awareness posts, and have had several girls find Papillary thyroid cancer. One of them had had a PET scan done that found nothing. Her cancer is in her lymph nodes. There are many different causes for OH and POTS, but if you haven’t ruled out thyroid cancer, I would get an ultrasound!
I just started high school, and I am not even able to get on the bus due to dizziness and nausea. My mom is 98% sure I have POTS, but no doctors will see us. We have tried a few things, including glucose tablets. I can’t eat or drink anything without feeling nauseous. Does anyone know anything to help?