Postural Orthostatic Tachycardia Syndrome (POTS) is both mystifying and misunderstood by nearly everyone, including most doctors. A relatively new disease, POTS still lacks a set of universally followed, predefined treatment guidelines. (This often results in confusion and frustration among patients and their physicians.) Instead of regurgitating the little information about POTS that can be found in medical textbooks, we decided to survey POTS patients (over 900 of them). By combining the largest survey of POTS patients ever conducted, our experience treating the disease, and the most recent medical literature on the topic, we hope to help demystify the medical mystery that is POTS.
This guide – which we’re calling the POTS Center – is intended to be the most comprehensive online resource on POTS. The POTS Center will be constantly updated to reflect the most current literature related to POTS. This page includes an overview of the disease, along with the most notable findings in our survey. Please don’t forget that each section has a page dedicated to it, where you can find more in-depth information. All content is written by one of MyHeart’s volunteer cardiologists and then reviewed by at least two others.
So without further ado, we welcome you to the POTS Center – a small place on the internet where we combine real patient feedback with published information and our own experience treating the disease – with the hope we can make the lives of those suffering from POTS a little easier.
What Is POTS? A Brief Definition
POTS is a form of dysautonomia that affects the flow of blood through the body, thereby causing dizziness when standing. Technically, someone has POTS if their heart rate increases by 30 beats per minute or their heart rate is greater than 120 beats per minute within 10 minutes of standing up.
The autonomic nervous system regulates involuntary actions that allow the body to function. When we stand, for example, the body needs to accommodate an entire set of processes to allow this. Upon standing, a significant amount of blood automatically falls to the lower body. Autonomic reflexes ensure that blood gets appropriately distributed to the upper body by changes such as muscle tone, vessel tone, heart rate, and pumping responses in the heart.
There is a range of diseases that affect the autonomic nervous system known as dysautonomia. POTS is one of them. In POTS, there is increase in heart rate and light-headedness on standing, as well as exercise intolerance, fatigue, and a multitude of other symptoms. POTS may be so severe that even normal everyday activities usually taken for granted such as bathing or walking may be severely limited.
Although anyone can be affected by postural tachycardia syndrome, it is by far most prevalent among woman in their teens, twenties, and thirties. There is a wide spectrum of POTS-like disorders that falls under the umbrella of dysautonomia, several of which do not have the increase in heart rate.
POTS is most commonly known for causing dizziness upon standing. In some cases, patients actually faint when trying to stand, earning POTS the nickname of “the fainting disease”. However, dizziness and fainting are just a few of the many often debilitating symptoms POTS patients battle on a daily basis. Additional symptoms include:
- Abdominal pain
- Chronic Pain (General)
- Chest Pains
- Heart Palpitations
- Shortness of Breath
- Brain Fog
- Sweating Abnormalities
- Bladder Dysfunction
According to our survey, fatigue (95.2%) is the most common symptom – which isn’t surprising considering the commonality of POTS and Chronic Fatigue Syndrome (CFS). Dizziness when standing is the second most common symptom (95.2%), followed by brain fog ( 93.1%), and heart palpitations (92.0%).
When reviewing these symptoms, it’s no wonder POTS is called “the invisible illness” – nearly every symptom is subjective. It’s important to remember that although dizziness is the trademark symptom, POTS does a lot more than just make someone dizzy.
Of the symptoms, patients report fatigue to be the most problematic or troubling symptom associated with POTS. Fatigue is also to blame for many of the complications that come with POTS. For example, it’s common for teenagers with POTS to have a hard time getting to school on time in the morning. Patients also find it incredibly difficult to get out of bed at all. People suffering from POTS can find themselves in a frustrating cycle – they won’t feel better unless they’re active, yet they don’t’ have the energy to be active. Frustratingly, with POTS the symptom seemingly preclude its treatment, i.e. it’s very difficult not have a sedentary lifestyle without enough energy to get out of bed, much less run several miles every day.
Dizziness (48.5%), brain fog (43.8%), headaches (37.1%), and chronic pain (34.9%) were rated the most challenging symptoms after fatigue (71.8%). You can read more about POTS symptomology here. Brain fog is a unique symptom associated with POTS. We have a section dedicated to brain fog and POTS here.
Diagnosis of POTS
POTS is typically diagnosed through a variety of tests, the most common of which is called a tilt table test. With this test, patients are strapped to a table which is tilted to simulate the process of standing up by forcing blood from the upper body to the legs. Tilt tables aren’t available at all hospitals, so some doctors diagnose POTS by monitoring changes in heart rate and blood pressure while the patient moves from laying down to standing up.
Various types of doctors can diagnose POTS, but our survey found that cardiologists most commonly diagnose the disease. We should note that a large percentage of respondents who selected “Other” indicated a neurologist diagnosed their condition. Click here to read our detailed section of diagnosing POTS.
Challenges Faced by People Being Diagnosed with POTS
Unfortunately, individuals often face a number of barriers before and while being diagnosed with POTS. The reasons for this require further research. Nonetheless, it is currently far too difficult for patients with POTS to receive proper diagnosis and treatment.
For example, Postural Orthostatic Tachycardia Syndrome is often misdiagnosed by doctors’ as anxiety, panic attacks, depression, or some other psychological disorder. Of those surveyed, over 78% said it was suggested they suffered from a psychological not physical, disorder when being diagnosed.
There is no medical evidence that people with POTS are predisposed to anxiety or panic attacks. On the contrary, existing literature suggests individuals suffering from POTS are as likely or less likely to have a mental disorder than the average population.
Another notable finding in our survey is the amount of time patients can suffer from often debilitating symptoms before receiving proper treatment. Nearly half stated it took more than 2 years to receive a diagnosis.
While we don’t know the reason it’s so difficult for patients to receive proper treatment for POTS, we can conclusively say that it’s not because these patients aren’t trying to understand the cause of their symptoms.
Making this worse – and as is the case with nearly any medical issue – receiving a proper diagnosis is key to improving POTS patients’ quality of life.
Treatment of POTS
There are three primary treatments for primary POTS; diet, exercise, and medication. Diets that are high in sodium and low in gluten have proven to be effective in some patients. (You can find more on the best POTS diet here.) It’s also important that those suffering from POTS exclude certain items from their diet, which you can read more about here. Exercise has also been proven to help patients address some of the symptoms they experience. You can read more about how exercise helps in this section. Finally, several medications – and combinations of medications – can help to relieve POTS. Click here to read our in-depth section about treatments and specific medications used for POTS.
The Most Effective Treatment?
In our survey, we asked patients what they found to be the most effective treatment for POTS in their experience. Over 53% indicated medication(s) were most helpful, followed by diet (11.1%) and exercise (10.5%). (“Other” was the second most common response, with over 25%. We hope to learn more about these treatments by working with the POTS community in the future.) As physicians, we don’t feel comfortable endorsing medication as the single best treatment, because there’s so much variation from patient to patient. The best course of action is to work with your doctor to find a treatment plan that works for you. You can find scientifically-supported treatments and the corresponding literature in our section detailing POTS treatments.
Types of POTS
We cover the types of POTS in more detail here. In summary, POTS is divided into a few types – neuropathic and hyperadrenergic. Neuropathic POTS relates to a disorder in the nerves that prevent blood from being pushed back up to the heart from the legs. Hyperandrenergic POTS is related to high levels of norepinephrine as the source of the symptoms. Furthermore, the disease can be classified as Secondary POTS. In this classification, the dysautonomia is a result of another condition or disease in the body. Click here to find a more detailed explanation of the types of POTS.
What Causes POTS?
POTS is a very complex disease that can have many causes. Generally speaking, causes of POTS are broken down into two sections: primary causes and secondary causes. Primary causes of POTS are often the source of the disease for younger patients. Some of the primary cause agents of POTS include nitric oxide, neuropathy, physical deconditioning, and various viruses. Secondary causes of POTS are when another disease or condition cause the disease. Some examples of secondary causes include:
- Adrenal Disorders
- Lyme Disease
- and many others
Read this section on “Causes of POTS” for a much more comprehensive list of causes along with supporting medical literature of each.
A Call For Awareness & Understanding
Some estimate that roughly 500,000 people in America suffer from POTS; however, with the difficulty associated with receiving a diagnosis there’s no telling how many patients have POTS and don’t even know it. While we don’t have any short-term or easy solutions for these problems or homeopathic cures to provide, there are a few points worth making.
It’s fair to conclude that increasing awareness about this mysterious disease – not just among those who have POTS but among their friends, family members, and loved ones – helps the patients manage their condition and, perhaps more importantly, believe they can overcome a challenging condition.
It’s this statistic that motivated us to create the POTS Center. We’d encourage you to share this resource – or if not this resource, any medically accurate and helpful resource on POTS – with anyone you see fit. You never know who may have POTS but, due to challenges mentioned above, never got the diagnosis that could help them regain control over their life.
About the Survey
The survey was conducted via Facebook Groups dedicated to POTS Syndrome. We asked that only people with an official diagnosis take part; however, no additional efforts were made to “proof an official diagnosis”. Thank you so much to all of those that participated!
References & Resources
Adolescent fatigue, POTS, and recovery: a guide for clinicians. Kizilbash et al. A comprehensive review of POTS, mainly written for clinicians, excellently written.
Postural tachycardia syndrome (POTS). Raj. An excellent review article on POTS in a highly reputable journal.
Postural tachycardia syndrome: a heterogeneous and multifactorial disorder. Benarroch et al. A review article on POTS.
Other Names for POTS
- Postural Tachycardia Syndrome
- Postural Tachycardia
- Postural Tachycardia Disease
- POTS Syndrome
- POTS Disease
- P.O.T.S. Syndrome
- P.O.T.S. Disease
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Angela C says
I have A LOT of these symptoms and have been in the hospital for migraines and chronic pain 3x’s in the past 4 weeks. When I asked my PCP about testing for this, she said I didn’t fall into the “guidelines”. But after glancing at your website, and looking over the symptoms ~ Headaches, Nausea, Abdominal pain, Chronic Pain (General), Chest Pains, Heart Palpitations, Fatigue, Shortness of Breath, Insomnia, Brain Fog, Sweating Abnormalities, Weakness, and Bladder Dysfunction… Tremors is the ONLY one that doesn’t fit!!
How do you get a doctor to agree to testing for this? Is this an actual recognized disorder? I guess I need to do some more research. This is just CRAZY!!!
Kendra Drake says
Find a neurologist that specializes in Automonic disorders. Especially one that specializes in Dysautonomia, where you can have a Tilt table Qsart test.
Virginia Thompson says
It was the EKG stress test that helped diagnose my POTS.
How was this performed?
Christy P says
I had an EKG stress test too. You just walk on a treadmill. Then I met with a “heart electrician” who looked at my stress test results and dx it immediately
Gloria Rose says
There is a neurologist at Scottsdale Mayo who diagnoses POTS and Mast Cell disorders. I think his name is Dr. Goodman.
Gloria Serrano says
Oh my lord, yes!
TIFFANY PARKER-HOWARD says
I was also diagnosed by Dr Goodman after 10 years of going to Barrows Neurology and after my neurologist was at her end of being able to help me. She did a Tilt table test that suggested me having POTS. I saw her for 2 years before she decided to test me for POTS. I was sent to Mayo and the second visit after many test was diagnosed with POTS and EDS the hypermobile form, and with in 5 visits diagnosed with possible Mast Cell Activation disorder/ immunology disorder issues. I was seeing Dr. Wadsworth up until December but she left the practice. I am going back to see Dr. Goodman next month. This diagnosis has changed my life for the better knowing the how and the what is causing the issues makes dealing with these horrible problems every day of your life. I hope that anyone going threw the process of thinking you have something needs to follow thru, if a doctor will not test you it’s time to move on and get a second opinion. It took me 10 years and 20 specialists, and over 100 trips to the ER to get the help I needed.
So I’ve been suffering for 95% of these symptoms and I was passing out on a daily basis but I’ve now got an appointment to see a cardiologist I’m kinda nervous but looking forward to getting some answers I hope you all get the answers you need and just remember when the going gets tough we are all in this together ♥️?❤️
John Fuller says
Hi, my Daughter had covid and then started having nearly all the symptoms of POTS…I live in AZ, she lives in SC.. are you still working with Dr Goodman and would you recommend him…?….thank you and I now know first hand how horrible this condition is so I hope you are feeling BETTER…
John Fuller/480-734-9809…[email protected]
Dr Saperstein in Phoenix works with POTS, MCAS and EDS–they typically go together. We had a tilt table test and went to 5 different cardiologist, and they would not look at the results from the first cardiologist because of the brotherhood. Only Dr Saperstein actually looked at the results of my daughter’s tilt table test–and verified, these are Classic POTS…..not even “maybe” but definitely. The reason I mention this is sometimes the interpreter of the tests can have an off day. Keep believing in yourself and do not give up.
Find a local cardiologist- some only take patients by recommendation, which in that case, either push for your doctor to send you to one, or find a new PCP. Thats what i had to do.
best of luck!
Helen Lehner says
See if you fit the criteria for Ehler’s-Danlos as well. http://ehlers-danlos.com/
I’ve been feeling these symptoms for years. My other physicians brushed me off while people I know suffering from this have told me to fight harder. I finally saw my neurologist again who claimed my potential for MS was actually fibro but provided no relief or suggestions on what to do. I also saw a cardiologist I found on my own because of heart fluttering and my family history of heart problems.
Luckily I found a new PCP that understands that I’ve been suffering for years and has been seeing me at my absolute worse during my last two visits. She took the time to put me on supplements to try and other medications to see if anything they suggest for fibro actually works. She has no recommended me to an electrophysiology cardiologist to find a diagnosis because my symptoms match another patient she has almost to a T that has been diagnosed with POTS. My next stop is a 2nd opinion from a new neurologist if this doesn’t pan out.
I hope you’re able to find someone that listens to you. It’s been so refreshing to have someone that is willing to listen to me and help me out while not accusing me of being crazy or blaming some other virus on my constant pain.
You most likely have Lyme Disease and/or one or more co-infections associated with Lyme. Too many people (including myself) are misdiagnosed and/or undiagnosed until the problems become system wide. There is Lyme disease in almost EVERY state and EVERY continent (it’s a pandemic) despite what many doctors and/or “experts” say. The CDC has finally recently admitted (after years) that the number of people who get Lyme and co-infections annually is over 300,000 (at least ten times the amount they had been certifying for many years). I was mis and un diagnosed for years, even in an area that is known to be hyper endemic!…go figure. Research it and don’t take no for an answer if you feel like this may be causing your symptoms. There are “Lyme Literate MDs” out there who may be able to assist you in reclaiming your health. Best of luck to you.
Bad answer! Don’t put all your hopes in the thought of one condition. Not “most likely” but “possibly” have Lyme. There are an estimated 1-3,000,000 people in the US living with POTS, making it a much more significant condition than previously understood. Lyme is a possibility but not a probability that should stop you from exploring other options. Lyme generally cannot be diagnosed for the first month, and potentially requires several rounds of testing. If it is Lyme then you know, but if it is determined to not be Lyme, continue on with a cardiologist. Don’t take the non-diagnosis as an ending point. It took us a while and a bunch of doctors (3 cardiologists, 2 neurologists, PCP, and a pulmonologist) before coming up with a beginning point and then the cardiologist was an idiot. I say this not lightly, however he prescribed things like: “eat a salty snack a couple times a day.” He also did not have a tilt-table, but instead used a nurse with a BP cuff and stop watch….
D, I couldn’t agree with you more. And Lyme is an easy one to rule out via tests outlined by the CDC.
WOW! A BP CUFF?? I feel dizzy and faint when they take my BP. That’s not normal?
The other side of the story is that my daughter had Lyme, was treated and later exhibited symptoms we thought were chronic Lyme. It turns out it was Ehler-Danlos and POTS, so we chased the wrong treatment and diagnosis.
Jen Nuss says
Yes!!!! Thanks for spreading the word about how rampant is! The CDC and the government in general are downplaying it. So frustrating! My daughter got Lyme disease at age 6 and a second case at age 11. She is now 17 and completely debilitated. Had to withdraw from school. Rarely leaves her bed. She’s been diagnosed with POTS for years but all the salt and fluids in the world haven’t helped. Blood pressure medicine gave her migraines. Doctors have diagnosed her with extreme anxiety (it’s all PHYSICAL symptoms of anxiety) which I believe is POTS. I think her brain misinterprets the physical sensations (racing heart, palpitations, sweating) as anxiety. You seem very knowledgeable. Do you have any suggestions for me? Do you think she needs more treatment for Lyme? Please answer! Thank you!!!!
Jen, your daughter may be experiencing anxiety due to her symptoms. Before I was diagnosed with POTS, I dreaded fainting episodes which led to extreme anxiety because my first episode happened when I was driving on a freeway. Finding the right meds to help your daughter function is very difficult. It took months for my cardiologist and neurologist to find the right meds to alleviate my symptoms. I’m on blood pressure med, Xanax as needed for anxiety, but I rarely need it now, and Sertraline which is an anti-depressant that actually helps control seizures. Sertraline has controlled my fainting episodes. I also take Zofran for occasional nausea. I have a demanding job so I had to get control of POTS so I could keep working. It’s a difficult condition to manage, but it can be done. I hope your daughter finds relief.
I recommend a neurologist who understands small fiber neuropathy. The autonomic aspect of sfn includes POTS and is described by Dr. Oaklander the leading researcher in the field. Apparently, POTS does not show up on regular cardio work ups because it is inadequate pre ventricular filling. A decrease in sweat glands associated with sfn shows dysautonimia, including POTS and other autonomic irregularities.
Unfortunately I just saw this but please go see a cardiologist. There you will find the answers you need.
Hi there, check to see if there is an autonomic testing lab in your area. I just finally got testing results that show I have POTS, but have never fainted or been overly dizzy. I have almost all the other symptoms though. It has been a long road. I live in NH so I am able to travel to Boston. My pcp referred me to the Beth Israel Autonomic Clinic…long story, but the doctor there refused to see me after reviewing my records…said I should go to a headache clinic! Luckily, I had found the clinic at Brigham and Women’s and they only needed an order from a doctor. It took a couple months to get in, but I received the results today and now I can start to work to get relief! Good luck and I hope you find answers!
Hannah H says
I would see a Cardiologist. My physician sent me to one and we did many tests and didn’t stop until we found a solution. Now I am currently taking medication for my POTS and it has saved my life. I have had many incidents to where my heart has stopped completely. So I would tell your current physician to send you to a cardiologist.
Kimberly Krakowski says
what type of medication works with POTS and do you also have EDS like I do?
kat Sutherland says
what medication seems to help your pots??
wow. this is so helpful.
Teri Baker says
Are there any specific first aid concerns associated with POTS?
MARIA SANTIAGO says
I’M 74, AND BEING DIAGNOSED WITH SISTEMIC LUPUS ERITOMATOSO SINCE THE 80’S. I RELATE TO MOST OF THE SIMPTOMS LISTED IN YOUR ARTICLE. I’M WAITING FOR A ENFALOGRAMA’S RESULT.
Right here is the right web site for anybody who wishes to understand this
topic. You know so much its almost tough to argue with you (not
that I personally will need to…HaHa). You definitely put a fresh spin on a topic that
has been discussed for years. Excellent stuff, just wonderful!
Rebecca Luna says
I was having several of the symptoms for several years and finally after yet another trip to hospital i was told to follow-up with a cardiologist he was awesome did several tests and I was diagnosed. ..I chose to go the diet way instead of medication due to I’m not that compliant with medication. My life is much better now.
This was actually discussed a quite a while ago and I agreed.
Gentle yoga and mindfulness meditation will probably
be supplied at a stage appropriate for all members.
Absolutely wonderful to find this resource. Thank you. My Sleep Neurologist who treats Narcolepsy on a few occasions noticed some Complaints and had me see the staff Autonomic Specialist. DIagnosed POTS about a year ago. For me, it was the first time in 35 years I understood why I have chronic IBS (Irritable Bowel Syndrome). Its been caused by POTS! Ive found NO gluten for me, exercise, when I can.. and acceptance has helped. Its as hard as Narcolepsy at times if not worse, but is what it is. Look forward to more on this great site.
Hey keith I cant believe this I too have IBS and POTS and I cant sleep either.
Me too. I found out I have a parasite Blastocystis. Unfortunately every time I take antibiotics it make my POTS really bad. I wish hospital would take me in and help me but they just send me home.
Jo Edson says
My son also has narcolepsy with cataplexy and a year later was diagnosed with POTS and Ehlers Danlos. The POTS means he can’t use ritalin for his narcolepsy and if he doesn’t get enough salt he ends up suffering the side effects of POTS kicks his cataplexy off. It means he will collapse in a cataplexy attack and stay down because of the POTS.
It is very hard with you have both because you don’t know what is kicking what off.
Insomnia with Narcloepsy is a real kicker.
Has he tried using Ritalin, or another stimulant to manage POTS? I’d speak to a doctor who is open to it. I use Adderall XR. It’s vascular constrictive properties help my POTS. My heart rate is still elevated when I stand/sit, but nowhere near as much as when I don’t take it.
I take the same, and see a top POTS specialists who says it’s fine. Caffeine also helps me tremendously. For others, caffeine makes it worse. I advise everyone to do all you can to find your underlying reason(s) for your POTS. Different causes have different treatment options, particularly medications. It is a syndrome with very different disease mechanisms that can lead to the same cluster of symptoms.
Hi… i am a 45 year old female who was diagnosed with POTS via tilt table test… I am working with several doctors, but really need anything advice you can give as to were the best treatment place/doctors are? I would really like to find the way nderlying cause and other treatment options. I will travel anywhere! Please let me know… thank you!
Cleveland Clinic and Vanderbilt are the ideal places to go. They have the latest and greatest diagnostic tools. Cleveland Clinic you can refer yourself. Cleveland Clinic can often maintain a long distance patient doctor relationship as well as work with doctors in your town as I was an out of town patient who benefit from that relationship. Most importantly, I was treated like a guest in a upscale resort. They impressed me with holistic approach to management. They practice including the patient’s in put in that patients’ treatment plan. On the other hand, Vanderbilt has been studying POTS for decades and have a comprehensive research guided approach to collecting information that will help us all understand the intricacies of the disease. You will need a referral and may have to wait. My desire is to go there and to add to the body of research.
Michelle I see Dr. Phillip Low at the Rochester Mayo Clinic. He is a top POTS specialist (neurologist) and helped coin the term POTS in 1993.
The MN Mayo Clinic has one of the largest studies on POTS and their facility/testing is top notch! Dr. Low diagnosed me with the hyperadrenergic form of POTS before all the tests were even back!
After my diagnosis I received a personalized diet, medication and lifestyle change regimen! Also, their cardiac rehab department gave my husband and I a presentation on POTS before creating a personalized workout regimen for me!
I’m no longer in a wheelchair and can do an elliptical for 30 min!! Previously 5 min of recumbent exercise on a bike would cause blackouts & seizure like activity (full body tremors).
Depending on your insurance you may not need a referral! Good luck!!
I forgot to mention Dr. low maintains a great long distance relationship as I’m out of state. We speak via a patient portal and he responds within 48hrs, usually 24! He adjusts all my meds in concert with my PCP!
Patrick Tucker says
My wife has been suffering from most, if not all, of the symptoms of POTS for more than 4 years. Onset of symptoms followed closely a failed rotator cuff repair surgery. In addition to most of the symptoms described on this site, she also suffers from daily periods of severe facial flushing and constant extreme heat sensitivity (we keep our home at 56* F at all times). She is essentially house-bound because of the heat issues. She was diagnosed with “orthostatic hypotension” following a tilt table test, but was told she did not have POTS. How prevalent are facial flushing and heat intolerance in POTS? What, if any, are the distinctions between “orthostatic hypotension” and POTS?
Heat intolerance is quite common. I have POTS and experience worsening of symptoms in heat, though I would not call mine “extreme” or keep my home at 56. I also get flushed, particularly in heat, and one side of my face is significantly worse than the other. I would have to assume it has something to do with the autonomic nervous system and how it affects the blood vessels. The reason for the heat sensitivity is that heat dilates blood vessels, making the blood flow down to the legs more quickly and easily. The heat intolerance could suggest that she has problems with blood flow (like those in POTS) rather than just drops in blood pressure that a orthostatic hypotension diagnosis would suggest.
My blood pressure dropped on the tilt-table test, and I was still diagnosed with POTS. (By a different doctor than the one who ordered the tilt-table.) Also, I just have sporadic blood pressure in general.
STEVE LAFLEUR says
Hi Patrick i was reading about your wife and how she got POTS after surgery (i know this is an old post). I have POTS and believe i contacted this syndrome after anestisia. I had abdominal surgery 6 months ago and had horrible symptoms after surgery: tachycardia, fatigued, hypoglycemia, etc..i tested for vagus nerve damage but turned out negative (thank god). However i was diagnosed with POTS, im beginning to think that the anesthesia created all these symptoms from cellular damage. Hope you get this message
I have horrible heat and cool if sensitivity. I am like a thermometer. I hate being so sensitive to temp changes. We had the first nice day here about 2 weeks ago and I wasn’t outside in it for even 10 minutes. It was 85 degrees and I had to go sit in the car with the AC on and suck down water. I was miserable.
I have so many of these symptoms and just heard about POTS in the last week. A lightbulb went on. I see my PCP at the end of the month. Unfortunately, I have had an intractable migraine for over 10 months straight. I just thought these symptoms were part of that. I’m already on so many medications.
Do u all feel like this one word pretty much sums up how you feel with this condition– DOOM? Like literally DOOM is going to swallow your entire existence? Like you feel like u can’t and don’t even want to bother lifting a finger? And when u stand it’s like death is seriously seconds from towing you under? Like, it’s the most impossible feeling to describe that only if you could let someone feel what you feel like they’d search endlessly for relief? To sum, would u rather have perminent food poisoning to a spectacular degree even prolonged lifetime labor would feel better that what your feeling now???… OH YES! I know that feeling oh too well! And after struggling with it in ER a doctor I like to call GOD, saved me! He lifted that burden off my shoulders in 15 minute – – I was so received that he knew and fixed me ASAP that I’m indebted to him as a slave for the rest of his ory life! There were no words when he left the room, just went about his way saving other people in the ER.
Dennis bradbury says
Our 15 yr old son has been diagnosed with pots 6 months ago he collapsed twice a day and has done seriousness damage to his face and body he’s been to a lot of different doctors and hospitals before he was diagnosed with pots but has not been given anything to help him we just live like this day to day no school no life really it’s very scary but no one seems to want to help him he also has IBS we feel so sorry for him but don’t know where to turn to our hospital don’t help they just keep postponing his appointments all the time we’ve read up on pots and are tryin our best but he’s injuring himself badly any help would be appreciated or feedback
Oh dear god. I have IBS and POTS please take him to a cardiologist right away please. He needs to be on a medication called Midodrine its not great for the IBS but will stop him from collapsing. Trust me please.
Dennis Bradbury — Have you thought about getting a service dog? Chronically Jaquie on Youtube has several videos about her service dog Harlow (aka Hippo) and Hippo is able to tell Jaquie when she’s about to pass out. Maybe a service dog could help your son?
Here’s a very informative video about the world of these chronic syndromes which your son & your family are now dealing with: https://vimeo.com/101947622 It shows the relationship between Chronic Pain, Poor Sleep, Depression & Fatigue.
Whether your diagnosis is POTS, Ehlers Danlos Syndrome, Joint Hypermobility Syndrome, or Adrenal Dysfunction, each disorder tends to cause overlapping symptoms which can exacerbate the others. The video discusses the method & various treatments the author recommends to minimize the disorder’s effects on the patient.
One drug mentioned is Clonidine, a commonly used blood pressure medication, but also is used for suppressing adrenaline production. As fatigue increases, adrenaline also increases to combat the fatigue, but that then can negatively affect the quality of a person’s sleep.
To improve my effectiveness and quality of life, I’ve used some simple nutritional supplements from Hammer Nutrition (a sports nutrition company) to relieve the symptom of “brain fog” I seem to suffer from. Most important is a broad-spectrum formula of all the essential electrolytes called “Endurolytes.” Electrolytes are used for proper functioning of all the cells of the body. Secondly, there is chromium in a pill called “Chromemate.” This mineral helps regulate proper blood sugar balance. After taking a combination of these two pills, I find that I feel more mentally focused, more energized, and can now expect to accomplish more in the next few hours. The combination of these two supplements are also very valuable in reducing the effects of heat or humidity on the person who takes them.
I hope these suggestions may help in some way.
Out of curiosity, did your son receive the HPV vaccine before symptoms and diagnosis of POTS? I’ve noticed a lot of active young folks who’ve been diagnosed after this vaccine.
You need to find a cardiologist or electrocardiologist at a major teaching hospital. My daughter went through this for 2 years before being diagnosed. Get your PCP to refer your son for an appointment at a teaching hospital in your state that works with young adults not senior citizens. In the meantime encourage him to eat salty foods, plenty of water (my daughter drinks 60 ozs per day )and consider medication from cardiologist to help regulate and get his body under control. If he is anything like my daughter he is very weak and tired with not much appetite. I bought protein smoothies to help get some nutrition into her. It was a slow road as she had spiralled so low and was collapsing 2 and 3 times a day sometimes in the beginning. She is now much better and has adopted a gluten free diet which helps, she adds Propel to her water to add electolytes when she knows that she is getting tired or drinks a gatorade. Maintenance to stay healthy is constant but getting out of the fog is so hard. I feel your pain. My experience is that few doctors don’t understand what this illness is. Once you can start controlling the amount of times he collapses a day and can get to a day he does not, try to encourage him to start walking as exercise will help. The good news is that my daughter holds down a job and better understands how to maintain her Potts even though it still sneaks up on her.
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Ellen V says
My granddaughter has also been diagnosed with POTS, however she doesn’t feel dizzy before she faints. Her hands start shaking and rising up. After that she can’t remember anything. When she comes to, she feels nausea, vomits and has a bad headache. Doctor suggested she see a neurologist for the hands shaking.
Patrick White says
Ive had pots syndrome since 2011 and I’m now 57. I was very athletic my whole life! I have periods of feeling great to feel like I could die! I get so tired! Just doing my wife’s and my laundry wears me out! 2 months ago I felt my BP dropping and knew I was in for a pots episode! Worse, I got a stomach virus that had me sitting on the throne while throwing up in a trash basket! At the same time for 10 hrs trying to stay consence! The pain was UNbelievable! I have yet to recover! So weak and days I can’t stand up without passing out! Your life has a total change and you fight everyday to some kind of normal! I’m lucky, great family and a wonderful Dr! I read others have no one! Prayer gets me through the really bad days!
Julie West says
I have been chasing answers to my son’s health problems for 6 years now. He has been diagnosed with hypothyroidism, spent 2 months in the hospital for a stomach infection that required 2 years of antibodic treatment. Since then his health has been bad. He suffers from anxiety, depression, sleep problems and just about every symptoms mentioned having to do with pots syndrome. Last year he was diagnosed with addisons disease and started treatment but still suffers from many dipiltating symptoms. My continued research into finding him relief and quality of life has brought me here. I will take this info back to his dr and insist on a referral to a cardiologist. I will never give up on him! Thank you for this valuable information.
Have you monitored his aldosterone? If he has Addison’s it could be a problem for him. I have very low or not measurable levels of aldosterone and have to take Florinef to compensate. I am completely non-functional and fainting without it. Florinef helps your body retain the fluids and salt it needs to keep blood volume up high enough. I have chronic low blood volume and red blood cells–mine not found on typical CBC blood draw, but with nuclear hemodynamic testing at Cleveland Clinic’s Syncope lab. Increasing blood volume makes a world of difference for me and other POTS sufferers.
Abigail Doll says
I have been suffering from pots for many years. I get flushy, my heart really races, I get dizzy, nausua/vomiting, sometimes can not sleep. I also get this little pots rashes,and modelling, which are little marks on my body. I also can not take heat/coldness as much. I have been diognosed with pots at age 11. My allergist did a skin prick test, yet to be POTS! I suddenly felt really bad again, so told him I having another pots episode, and my allergist suddenly listened to my heart, and he could feel and hear it pounding. I went home and had some salt and water.
Pam Miller says
With the flushing, rashes, marks on your body you may want to pursue looking into Mast Cell Activation Syndrome. Check out Dr. Lawrence Afrin’s book Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness in Medical Complexity to see if MCAS may apply to you. Be careful as if testing samples are not handled properly by the lab (for example 24 hr urine test MUST be kept cold) results will come back saying no issue when in fact there may be. Family member w/POTS currently in process of getting 2nd opinion re: MCAS as underlying condition after attending Dysautonomia International conference this past summer and learning likely in fact may be also dealing with MCAS. Highly recommend that if you pursue whether you have Mast Cell issues go to someone who specializes in Mast Cell issues as this is a fairly “new” area of medicine for which many physicians are unfamiliar with the current research if they are even aware of MCAS.
Joan O says
I have most of the symptoms described. My history is regrowth of meningioma operated on, then started to have the postural hypotension. The tumour went roughly from t5 to t9. Then I had a fracture at t6. Really since the fracture life has got worse. I’m so tired and sore that a lot of the day is spent lying on the bed. As someone told me the other day you have to laugh, when I told him about a diagnosis possibility of being histrionic. Actually, feel these days as being quite lost, having always been so independent.
Mich B says
A treatment my doctor recommended that has helped with my POTS is drinking Sole Himalayan salt solution (you can google how to make it) in the morning. It has helped ease my dizziness upon standing or changing positions. Just wanted to share!
Neuropathy cannot be a cause for POTS. Neuropathy is nerve damage. Whatever caused the nerve damage CAUSED the POTS. Furthermore, abdominal pain is the most common symptom of acute porphyria a genetic metabolic condition that can cause postural hypotension which is a symptom of disease, not a disease in itself. Lastly, I do not think physiacl deconditioning causes POTS I was told that when I was an athlete!
Cheril Chronister says
I’ve had POTS since I was a teenager, I’m 57 years old. It took me over 15 years to get a correct diagnosis. I
I have had every symptom except tremors.
As I age, the symptoms are getting more intense. My best to everyone who suffers from this disease.is
Sam D says
I have had POTS since giving birth to my twins. Over the last 11 years things have gotten worse to the point where i have been passing out a lot more lately. It is a very scary thing but i am really trying to stick with the diet and exercise program my neurologist has given me. Not a fun diagnosis.
Im 17 and was diagnosed with POTS a little over a year ago. If started with me just thinking I was sick and eventually the sickness never went away. I was getting so weak and unable to eat that I would cry for hours because I felt like I was dieing. Sounds like an exaggeration but I could not begin to describe how badly I felt. It took me 2 hospital visits to be diagnosed and another trip after because I was still very ill and was not on medication yet. I have anxiety and depression which my cardiologist has told me can worsen with a person who has POTS. I was unable to go to school for a long time and eventually started doing half days. my doctors and parents started looking into online homeschooling. I hated this idea and really pushed myself to go to school. I learned that laying down for long periods of time makes my POTS worse. So sitting at home all day was making me feel worse. I eventually made it through full days of school. I passed out while running and my first lacrosse practice back and was able to learn when I need to stop while exercising. I’m currently in the beginning of my senior lacrossse season and I’m playing some in games and getting through practices! Keeping myself to a set routine and pushing myself to go to school and practice makes me feel better. Although there are days where I am too exhausted. I take midodrine and fludrocortisone for my POTS along with salt tablets. I found that even if I was very hydrated that I needed electrolytes everyday. Gatorade has a lot of sugar so sometimes I replace Gatorade with NUUN tablets. You can get them at DICKS and REI. They have salt, electrolytes and vitamins. I try to have one in my water everyday to keep myself feeling good.
Christy Henson says
Caroline I was hoping I could reach out to you for some advise for my 18yr old daughter. She has been passing out gets dizzy all the time and has every symptom that comes along with POTs. She did stop going to school and is now home schooled. I was hoping maybe the two of you could connect and see if you could give each other some teen advise as to what helps you get thru you day, or maybe just be support for each other.
Has anyone looked into spinal misalignment or spinal disc dysfunction? I’ve had POTS for years. Since they don’t know why we have it and there is no cure- I’m trying to figure things out myself. Just curious if anyone looked into spinal disc issues?
Amanda, 80% of POTS patients have scoliosis, curvature of the spine. My daughter has severe scoliosis. She is 22 and has had POTS since she was 14. It has become more severe as the years have gone by.
My daughter has POTS and lordosis. We know 2 others with POTS, one has lordosis and the other scoliosis. I feel like there’s a connection somehow.
Does this sound like POTS or something a bit more/less serious?
-Went in to wyckoff medical ER in Brooklyn on 3/22 with a heart rate and murmurs ranging anywhere from 110-130. Could physically see chest pounding (this has been happening my entire life, especially at night after drinking red wine or sometimes for no apparent reason). Had been laying in hospital bed for six hours until I finally got to see a doctor.
-During this 6 hour period, tachycardia ranged from 110-130 consistently and never dropped. Finally got to see doctor and he told me that I look dehydrated and may have POTS. Told me to stand up and heart rate jumped to 150 (monitor alarms went off). He gave me 2L of IV fluids and told me he’d be back in an hour to check on me. 20 minutes later while laying down, monitor alarm went off again and RHR had jumped to 170.
-Entire body went into shock and went completely numb. He came back, did an EKG and an emergency CT scan (including contrast) with suspicion of possible pulmonary embolism. Tests came back negative. No initial RHR drop from 2L of fluid, so I was given a generous dose of Ativan. I was mostly unconscious on a heart monitor in the cardiac unit of wyckoff medical for another day after that. I was given Ativan and Ambien for sleep.
-My nurse stated that my RHR dropped to 38 at one point, which the cardiologist didn’t seem to be concerned about. A team of cardiologists and students that I didn’t see once through my time there came to discharge me and told me to follow up soon with my PCP. They gave me a short course of xanax and prescribed me to Zoloft. I felt a little bit judged because my chart from a visit i had a month prior showed cocaine usage. I went in about a month ago with similar tachy/chest pains/shortness of breath symptoms after a night of drinking and light cocaine usage. My symptoms this time around were much worse and I feel that I wasn’t taken seriously for that reason (not to mention i’m currently uninsured). I have been completely sober this month out of fear of another episode from the month prior. I even quit drinking coffee which I usually drink every day.
-I had 115 tachy again by the time they were discharging me and they still told me to leave. I went home and have continued to feel the same symptoms until I decided to go to Beth isreal hospital in manhattan two days later for a second opinion. The symptoms are very intolerable. I brought my discharge paperwork for Wyckoff and showed it to the ER doc at BI and she didn’t want to run anything other than an EKG because she thought it was counterproductive.
-EKG was normal and she gave me a 5 day course of beta blockers, which has been the only semi-helpful thing through this whole experience. She was also much more helpful and referred me to an endocrinologist and cardiologist for follow up. Since then, symptoms mentioned persist including but not limited to:
-Sharp infrequent stabbing pain on top left part of chest
-upper back pain that feels almost like arthritis. It just feels tense and blocked up even after deep tissue massage. The pain radiates into my arms and hands.
-shortness of breath/chest tightness with a dull pain that shoots down my arms.
-A frequent feeling of pins and needles, almost like an itch just below the surface of my skin. The feeling slowly progresses into a dull painful ache
-constantly sweating (I’ve only been sleeping about 1 hour a night and I wake up with my pillows drenched in sweat). I have sweaty hands and feet all through the day as well.
-muscle tremors randomly throughout my body. A lot of muscle twitching on my face (lip, cheek, eyelid) but also in arms and legs
-Waking up with a headache/stiff neck and tightness in my throat.
-ringing in right ear
-very intense and frequent gas and gas pain (this has been happening for years but has just peaked in intensity)
-unproductive bowel movements
Any feedback is appreciated,
I have POTS. If you look at the symptom list for NMH or POTS against the symptom list of speed or steroid abuse there are overlaps. It’s easy for doctors to answer you or treat you like your cocaine use is the only problem. You don’t know what the chasers are in the cocaine you’ve done and the drugs can exacerbate your actual ailments. Your symptom list sounds like POTS plus something else. For the POTS, the beta blockers are extremely helpful because that will reduce if not eliminate the syncope. I still get the uneasy nausea hot feelings with tachycardia, but I don’t pass out on the beta blocker. You can go to the endocrinologists, cardiologists, and neurologists for various symptom treatment. ER doctors are by far the worst to go to in your position…you’ll have to get answers elsewhere. ER doctors are trying to treat extreme numbers of patients in a short time with common issues. They are not in a position to diagnose your long term issues.
I’m seeing a new neurologist who is attempting to diagnose me with POTS, the problem is that during this tilt table my heart rate increased by more than 30, but it didn’t stay that high. The test lasted for 20 minutes and I got up to about 135 bpm on 5 occasions but it always regulated itself before I passed out. My neurologist says that it’s not POTS unless it remains that high until I faint though. Does anyone know if this is correct, or should I go find a different doctor to get the diagnosis?
That’s correct. The heart rate increase must be sustained. Sounds like you might have one of the other forms of dysautonomia that are just as serious as POTS. They just get less attention.
My daughter is 12 years old and has been experiencing symptoms for 3 years, which precipitated with fainting a year before any other symptoms began. She started with shortness of breath, vertigo, nausea, vomiting, stomach issues (IBS), hand and leg tremors, weakness, red eyes and tiredness. She currently has dizziness (instead of vertigo), weakness, nausea, vomiting and often feels like she will faint. She has several days each month when she does not have the strength and ability to get out of bed due to her symptoms.
The only remedy through all of the doctors, medications, and therapies have been certain amusement rides with centrifugal force and at one time swinging forcefully on a swing. If a ride, or combination of rides, works it often takes a couple of hours to relieve her symptoms typically at a level of 9.5 (from a scale of 0-10 with 0 being no symptoms) which she experiences 24 hours a day, 7 days a week. If it works, her symptoms are relieved from 9 hours to 9 days and then they return to the same level.
My daughter’s symptoms were posted on a Physical Therapy discussion site and some of the return comments of the PT’s were that she could have POTS. From what I’ve read, I’m not certain because she experiences her symptoms whether she is standing up or lying down and I haven’t observed an increased heart rate. Would this still be a possible diagnosis to confirm or rule out?
I’m not a doctor. I can’t say whether you could rule anything in or out.
My mother had a concussed inner ear from a fall as a child (long story) exacerbated by a serious car accident (long story) and suffers very similar symptoms to your daughter. The vertigo and resulting nausea, tiredness, irritability, and temporary numbing in the extremities has been helped by vestibular therapy. Consistent chiropractic and even ginger helps but by far the vestibular exercises and training has helped her.
I have dysautonomia POTS and the beta blocker has eliminated the fainting/syncope. I still get the nausea hot flashes fatigue, but at least I won’t die in the shower.
I just started having symptoms of POTS one week after a spinal fusion. The worse part is now I am so afraid to fall/faint. How much salt and water should I consume?
It took nearly 30 yrs and many doctors, medications and misdiagnosis to finally find a cardiologist who knew what was wrong with me.
RONALD R. ROSE says
MY WIFE SUFFERS FROM EXTREME DEPRESSION. DOOM AND GLOOM. ONE OF THE INDICATIONS OF THIS IS THE VERY EXCITED SHAKING OF THE LEGS. AT FIRST, THE DOCTORS SUGGESTED RLS BUT SHE HAS THE OPPOSITE CONDITIONS. THE SHAKING GOES AWAY WHEN SHE SLEEPS, SHE DOESN’T HAVE MUCH PAIN, AND DURING DEEP SESSIONS OF ANXIETY THE SHAKING IS VERY PREVALENT. WHEN SHE WALKS SHORT DISTANCES THE SHAKING DIMINISHES. WE HAVE KIND OF BEEN BRUSHED OFF BY THE MEDICAL COMMUNITY (WE DON’T MEAN TO OFFEND THEM, BUT THINGS HAPPEN) BECAUSE WE THINK THEY DON’T UNDERSTAND THE CAUSE, EFFECT, AND TREATMENT OF POTS. EIGHTEEN MONTHS AGO SHE UNDERWENT AND OBLATION OF HEART. THE PROCEDURE WAS QUITE INVOLVED. WE’VE TRIED TO READ THE AVAILABLE DATA ON POTS BUT WHAT WE REALLY NEED IS GUIDANCE.
Sara Stein says
My 13-year old daughter was recently diagnosed, and it has been a whirlwind of emotions trying to get her diagnosed, and then deal with appointments to help manage her symptoms. I feel so badly for her, and helpless as a parent. There is nothing worse than seeing your child suffering and not being able to help. For now, we are trying different med combinations. I’m hoping that some dietary changes will help too, but getting a teenager on board with that is a challenge.
Charity McPike says
Hi Sara – My daughter is 13 and was diagnosed with POTs in January, after 2.5 years of extreme exhaustion, debilitating gastrointestinal issues, vertigo, extreme anxiety/depression, rapid heartbeat, and blackouts. She only makes it to school a few days a month. On her good days, which can last a day and sometimes a couple of weeks, she seems perfectly normal and even athletic. She became suicidal several months ago and is now cutting. We’re beside ourselves trying to manage the exhaustion and emotions. It’s incredibly difficult to get her to wear the compression tights. Just curious how things have progressed with your daughter. Thanks
I was finally diagnosed with pots after a few yrs.
My gp Said that pots is really rare!!!
Does anyone know how rare it is an statistics please??
My husband has all of the symptoms and thru a Motility test done while he was under for a Endoscopy they said he has 100% failed parastalis of his esophagus, not the esophagus sphincter. He is on an all liquid diet due to the fact that he cannot swallow. Has anyone with POTS or something similar ever have this happen?
Lyn Buck says
My 17-year-old daughter was just diagnosed with POTS by a pediatric cardiologist. I had to threaten her PCP, who we are now replacing, for a referral. She has also been to a gastroenterologist and a sports doctor to try to find a diagnosis. Part of the reason for the diagnosis is because I researched her symptoms on my own to try to find out what was going on. Extreme fatigue is her most prevalent symptom, but she does have almost all of the other symptoms. While she does get dizzy when she stands up quickly, this is really not a serious problem. She was prescribed Midodrine, but had a bad reaction to it. Everyone we talk to stresses low blood pressure and dizziness, and tries to focus on that for her therapy—eating lots of salt, compression hoses, etc. None of it is helping, but I still can’t get anyone to listen to us. Is it possible she has something besides POTS? She only has the energy to go to school every other day and has had to stop swimming—she was a state champion working towards a college swim scholarship. The school is extremely helpful, but her grades are still dropping. I am at a loss, and don’t know where to turn for advice. BTW—I have had CFS/ME and Fibromyalgia for over 25 years, so I am not new to chronic illnesses and having to research them on my own. I apologize for this long email, but would appreciate any advice anyone can give!
Please look up the CDC’s updated information on CFS/ME. POTS can be a huge problem for those with CFS/ME. INIM in FL can take a deep dive into your immune system to look for problems for both you and your daughter. Also, are you hypermobile? If so, Ehlers-Danlos Syndrome can cause immune dysfunction, pain and POTS. I had no idea I was hypermobile until a PT told me. I saw a geneticist to confirm the EDS diagnosis.
Hi, Julie, My son has dysautonomia (his heart rate increase up 35, not exactly match POTS). He is also on the way to test genes for hEDS in Oct. 2019. I wonder for EDS, how doctor or patient can do to reduce the symptoms? Thank you very much.
Joi F. says
Vanderbilt University in Nashville TN has a Autonomic Dysfunction Clinic that you might want to check into if you have not been successful in locating a doctor to help you. Dr. Biagionni, at Vanderbilt, help diagnose me after many years of searching.
Tessy Dunne says
Hi Can you please answer as deeply as you can as I am 70 years of age and these symptoms seem to have crept up on me. I have been treated for SVT I have it for at least 12 years Recently diagnosed with COPD and possible MGUS and of course the famous frowned on Fibromyalgia for many years. The SVT hasnt been a problem for a long time but I seem to have had 2 Flares over the last couple weeks. For quite a while I have problems with walking and can fall for no reason have suddenly developed problems with standing and am unable to continue house work and other activities.
I have been in hospital for a week and doctors are unable to find out what all these symptoms are about or at least havent said anything to me Last week I had a Heart MRI and am awaiting results Hope you can offer some advice Thank you Tess
Vaile Walders says
Can you give me the name of a Gastroenterologist that knows about POTS in Maryland, Washington, DC, or Virginia
Curious if you found a GI doctor in MD, DC, or VA. My daughter has POTS, and has severe stomach issues. We saw Dr. Chao in Rockville. She’s familiar with POTS – I wouldn’t categorize her as a POTs expert though. There is a motility expert at Children’s Nationals in DC that deals with POTS, but you have work your way up to him by first seeing a regular GI doc. In the end, my daughter was diagnosed with IBS and prescribed Amitiza. She hasn’t started taking it yet, so can’t speak to its effectiveness.
kat Sutherland says
I am a 20 yo female with no major health problems. I moved to Florida a year ago and within 10 months have experienced symptoms like POTS. Extreme fatigue, pressure in my head, dizziness, constant exhaustion. if I lay in bed all day it makes it worse but if I am at work all day notice it as well. the head fuzziness is my main symptom. when addressing my GP about it she referred me to a neurologist and a cardiologist who told me I have epilepsy. I’ve been wanting second opinions. I have ‘episodes’ where I have felt completely fine then upon standing (sometimes even while I’m just sitting there) my heart rate rises and I get very light headed having to get all the way on the floor, my face flushes then when I come to I vomit. my doctors can’t explain anything to me, told me I have focal epilepsy and didn’t explain that at all. I have had an EEG and the left temporal love is slowing. does anyone have a familiar experience or opinions??? I am in healthcare and do not want to further my education till I know my body is safe and I’m in control of my head. the fuzziness is so overwhelming I spend my free time sleeping.
‘Primary causes include nitric oxide’. What exactly does that statement mean? Do you mean the preliminary evidence that suggests there might be a defect in nitric oxide in a small cohort of patients?
I have had a moderate case of POTS since I was 8. I pass out, completely, and I can be unconscious for 8 – 10 minutes. I try to avoid pools lol. I went completely diagnosed until I was 15. I would pass out randomly, sometimes 3-4 times a week. It was horrible, I was actually accused of passing out to garner attention and that I was mentally ill. Needless to say it was humiliating. I also had severe fatigue and brain fog. I applied to be evaluated at the mayo clinic. It was there that I was poked and prodded for months and finally they did the tilt table test. Finally! After so many years of being brushed off I had an answer. It was also revealed that I have Celiac and Chronic Migraine. The doctor I saw didn’t give me any other treatment options other than a kitty cocktail of 15-20 different medications. The prospect of chugging pills all day everyday didn’t jive with me so I worked to control my symptoms naturally. I am 25 now and I only pass out maybe once every couple of months. I worked on building muscle tone mainly in my legs and eating a higher sodium diet with LOTS of water. I think it is absolutely amazing that this site exists because I am still learning about this illness. Also its an on going struggle trying to explain what is wrong with me, I feel like all POTS sufferers need medical wrist bands.
Amanda Peterson says
Hi everyone. I have a question regarding pots and the diagnosis I finally got that I knew I had but think that the combined diagnosis equates to being pots. I’ll try to make it as short as possible.
My symptoms; dizziness upon standing, Even just sitting at times, I “black out” when walking sometimes (but know if I keep walking it’ll resolve or I’ll pass out but usually can tell which,cold sweats, vomiting(violently, extremely hot dripping sweat, light-headed if I don’t cool down), IBS (having to pee or #2 during these episodes or the symptoms will worsen), chest pains, shaking, tremors, tingling and numbness, bp180\100 bpm 95 to 130+, debilitating fatigue ( Even if I do simple things like dishes or taking showers..if I have sex or do light yoga or exercise I get so fatigued for sometime days after ( bf thought I have been trying to avoid him but I’m avoiding the symptoms, panic attacks, night sweats, low appetite, lots over 50 pds in a year (I was already skinny)5’8″ was 167, now fluncuates(sp?) between 119-130(I force myself to eat but makes me sick), heat & cold intolerance, diagnosed with orthostatic hypotension (months ago)and tachycardia (yesterday, finally), hypertension (also yesterday) and a few others symptoms (said by primary care physician) that go along with Ms (like numbness, tingling, pinpricks, itching, brain fog, short term memory loss, depression and a few others) seeing a neurologist next week. Yea! For a while install even buy some have been thinking that I’m just making this up because I’m lazy. But I’ve been dealing with this since I was a child and was told that exact same thing when I pass out while doing dishes by my parents (I really don’t know how somebody fakes that) but anyway I was wondering if the take acardia hypertension is pots? Do I ask the Nero for the tilt table test? 24h monitor? And\or what else? I know I’m forgetting a few things but I’ve been miserable and it’s embarrassing cuz I’m tired of people thinking that I’m just faking I used to be so active I used to walk everywhere and now I’m too scared to even go to the grocery store because he’s episodes happen while I’m out. I literally passed out and didn’t come to for a while in a grocery store right in front of the pharmacy and they didn’t do anything neither did the bf and then when I was able to make it out to the car like a guy literally came up to the car and asked if I needed a Suboxone because I looked like I was using drugs. And was laughing. That hurt me so bad. People are so mean. I could have been having a stroke or heart attack for all he knew! I can’t believe people would be so rude. I’m a recovered addict, have several years clean and I’m very proud of that! but since I’ve gotten clean I started noticing the symptoms have increased in severity since I was a child. And I guess doctors have been questioning my credibility and throwing everything down to anxiety. unwillingly started taking antidepressants and anti-anxiety meds to see if that would lessen symptoms but it hasn’t. Any advice on what to ask for at this appointment? Should I also request a referral to a Cardiologist or should I just wait until after my neurologist appointment? I tried to keep this short but there’s so much more but my mind is coming to a blank right now….
isla palmer says
hi everyone how’s life going
I am about to post what might look like a book…but I wanted to share with some things I’ve found to be INCREDIBLY helpful to keeping POTS (and NMH) symptoms at bay for me, in case any or all of these would impact someone else for the better. Hang in there. I personally came down with POTS after a bout with rough bout with mono in 2008. I was finally diagnosed with NMH (Neurally Mediated Hypotension, and then later with POTS) after being referred to a great neurologist, wearing a heart monitor for like a month, and then finally taking the tilt-table test which revealed the issue.
I am incredibly thankful to say that on MOST days now I am able to now function as I did before I ever was diagnosed with POTS/NMH. There are hard days still for sure (There seems to be a trend for me of a “dip” in my ability to function normally every 4-6 weeks currently.)
Here are some things that have been SO helpful to me. I put an asterisk next to the things that have been especially helpful, and two beside those I learned over time and didn’t find out from a doctor. Hope this helps some of you!
>>> Increase salt in your diet. In college (when I first became sick) I was trying to be healthy and avoided salty foods and ate foods that lowered my BP (garlic and oatmeal for the win, so I thought!). After I was diagnosed, before starting medication, the doc put me on salt tablets (like the ones that marathon runners take), to see if that would put my symptoms at bay. These definitely helped with my POTS/NMH symptoms, but as I was taking 12 salt tablets a day, the dehydration was REALLY hard to keep down, and I was incredibly nauseous with these, and the bloating/weight gain was hard. I eventually removed these from my diet and replaced it with medication. I now just try to keep lots of salt woven into my diet, and I only have things known to lower my blood pressure (garlic, oats, etc) on special occasions.
>>>*DRINK LOTS OF WATER as you increase your salt. Not only will lots of water increase your blood flow, but it will help keep you from becoming dehydrated from your salt increase. Keep those electrolytes up as you increase your water though. It seems the increase in water can backfire if you let it flush out the sodium/electrolytes.
>>>**Eat small meals throughout the day. Oh my goodness, this changed everything for me when I started doing this. It seems that when you eat a lot at one time, much of your blood then has to go to your stomach to aid digestion. With POTS patients, that pooling of the blood, is such a trigger of symptoms, as your body doesn’t naturally “tell” your blood now in your stomach to go right back to the organs and brain and such once digestion is complete. When I began eating little snack-sized meals throughout the day instead of three normal meals (depends on the day, but for me, typically 7-8 “meals” of something like an apple with a slice of cheese, half a burger, two eggs), I stopped having so many “crashes” throughout the day between meals. I think I personally already am a little sensitive to blood sugar issues, so this steadier feeding of my body coupled with the lack of triggering so much blood to flow to my stomach helped me TREMENDOUSLY. For me this takes more planning on a daily basis as I work full time and have to many little meals before I head to work, but 5 years into this, I can say hands down this was one of the best lifestyle changes I made to manage the POTS/NMH.
>>>Similarly, I ALWAYS try to have backup snacks on on hand (in my car, purse/briefcase, etc) just in case I start to feel a dip or my brain starts to get fuzzy. I am so thankful to have curbed many a POTS crash by getting this fuel/salt into me.
>>>Avoid standing for long periods OR sitting on stools or having your legs hang down while sitting. (I am now doing much better and can stand to cook, wash dishes, have a conversation, largely without fear of the onset of symptoms). If you do have to stand for a bit, tense your leg muscles and shift your weight frequently so that the blood pooling doesn’t happen so quickly. Keep it short, and don’t be afraid to ask people if they are willing to have this conversation sitting down. Avoid going to the store (or anywhere where there are lines!) at peak times. If you know you’re about to be standing a lot, I recommend laying down more beforehand/after or even laying on your back and putting your legs up against a wall (like in a 90 degree angle) for a bit to help blood already in your legs come back to the rest of your body before you stand for a while.
>>>*Prop those legs up! At work I have a small trash can hidden under our conference room table:) that I always put my feet up on during staff meetings. I put my CPU under my desk so that I can put my legs on it much of the time. At home I have an ottoman that I always put my legs on if I’m sitting for more than 2 min or so. I sit on the floor or crossed-legged a LOT when I’m in arm chairs, etc, and I’ve had to get over caring what other people think about my strange behaviors. 🙂 Like if is a lot better when you don’t pass out and who cares what people think.
>>>I’ve trained myself to sleep on my back, as I discovered that sleeping on my side caused my heart to have more palpitations. Not my fave, but it’s worth it to me.
>>>Within the first year of being diagnosed with NMH (and eventually with POTS), my cardiologist put me on 5 MG of Midodrine 3x a day. For me there are some side effects with this med, but they are absolutely worth the payoff for me. The first week I started taking it, I thought it must have been a fluke: I felt better than I had felt in MONTHS almost immediately and I could hardly believe it. After about 7 years of being on that dosage and feeling MUCH more human, but still having very frequent “crashes”, my doctor encouraged me to increase my medication. Eventually I agreed to try it, and increased to 7.5 MG tablets, and then to 10 MG tablets. I feel better than I felt before I ever got sick. Granted I have incorporated a lot of lifestyle changes over the years (as seen here:) that have impacted my symptoms greatly, but I honestly think that the dosage of medication that I’m currently taking is the #1 reason I feel as good as I do right now. #2 might be the spreading out of meals throughout the day, and #3 is probably the positional stuff I watch out for.
>>>Hot (ESPECIALLY when it’s humid or steamy) environments are really bad for me. For a while, I tried to take showers at night so I could go right to bed and not have to go on to the rest of my day after putting myself through standing in a heated, steamy environment. Cooler showers or allowing time to rest afterwards is also helpful. I read somewhere that when your skin gets pink/red in warm environments, your body (it’s amazing how we are designed!) is moving heat away from your internal organs (for protection/internal air conditioning) by causing your blood to move to your skin to release heat and cool off. But for people with NMH/POTS, if you get hot like this, once your blood goes out to your skin, it’s hard for your body to know to bring it back it to your other organs where it needs to be after the fact…and for me, a POTS “crash” often ensued.
>>>Suggest quiet, dark environments to rest in when you do crash. When I have a crash, loud or light environments are not restful to me at all. I often feel like my sensors are on overload, and every noise or light or movement feels like it triggers adrenaline in me.
>>>Write tips down for you and others around you. One of the symptoms I experience is having trouble thinking/confusion/brain fog when I have a bout with the POTS. As a result, I often can’t even remember if I’ve taken my medication recently or what I should do to make myself feel better, even though I’ve had this thing for almost ten years! I have a tip sheet written for myself in my wallet and have sent it to my coworkers so they know what to encourage me to do when I have a dip. It includes:
+ Make sure I’ve taken my medicine recently
+ Encourage drinking a LOT of water
+ (If juice, gatorade, or some sweet liquid is available, this often brings a quick bounce back! Caffeine during a crash is BAD though.)
+ Eat something – something with sodium is really good to increase blood pressure, and something quickly digestible helps in the moment (simple carb)
+ Some salt mixed in a bit of water (I keep those individual salt packets on hand in my purse/car
+ Lay down/even putting feet up on a wall or something stable
+ Quiet environment until I feel better, if possible.
+ Let someone else drive you home if you’re out and are unstable/having trouble thinking!
>>>Stress or thinking super intensely for a while (resolving problems or working on an intense spreadsheet for several hours) can be triggers for symptoms. Take breaks.
>>>Working out regularly has been helpful to feeling well for me. However, I avoid starting a workout if I am feeling really poorly (as again, the heating up of your body/blood moving to your skin thing/increased heart rate might backfire if you’re already not feeling too swell).
>>>Keep symptoms to other health challenges at bay when you can. I’ve discovered that allergy symptoms, colds/flus, stomach bugs, even menstrual cramps can make the POTS/NMH symptoms increase for me. I try to do what I can to stay well and keep symptoms of these things down. (though watch allergy, cold and flu meds – for me, something in these can trigger symptoms sometimes too.)
>>>Alcohol (even a little champagne at a wedding toast!) seems to be a trigger for me.
>>>Compression stockings are awesome. I wore these pretty solidly for several years, and discovered that putting them on first thing in the day (rather than after you’ve walked around a bit and gravity has done its thing) was more effective for me. I mainly used the highest compression, and though these are not my fave and are pricey, they do wonders! (tips: Don’t let them get too worn out. Hand-washing/drying keeps them lasting longer. Put lotion on your legs and give your legs a break from time to time so that your skin can heal and not be too dry. Supporthosestore.com often has good prices/sales.)
>>>So random, but somewhere along the journey I discovered that things that were tight around my waist/ribs caused me to breathe less deeply and thus caused me to feel more poorly as I wasn’t getting enough oxygen and that’s already a challenge with blood flow.
If you’re feeling poorly yet out and about/working, I recommend keeping a change of clothing that you can move around in/comfortably lay down in on hand, so you don’t get in a pinch with being unable to lay down in a back office in your nice business professional attire.
When I’m feeling like a “crash” is on the horizon:
+ I avoid singing, talking a lot, or expelling a lot of breath.
+ I set alarms to remember to eat/drink/take my medication (as foggy headed-ness is usually an issue during this time)
+ I avoid booking extraneous plans and try to rest/sleep more
+ I avoid drinking much caffeine (Note: A moderate amount of caffeine actually overall has helped me to feel better with the NMH, but when I’m especially prone to crashes, it is my nemesis.
That’s all I can think of for now. I wish I had known all of this at the outset, and I hope this helps someone!
I should have said *cardiologist* at the beginning in the first paragraph. Sorry!
Nina W says
Wow! What a super helpful response. Thank you for sharing
Rosie Albright says
That helps a lot. I’m thinking on seeing a specialist
Wow thank you that’s a great help i was diagnosed with pots about a year ago after suffering with symptoms for around a year and tbh i still haven’t gotten it under control i have many days whe
n I can barely get out of bed and I’m dizzy all day even when lying in bed
Elizabeth Mantis says
Thank you so much for this information, it’s of great use to me !
Okay, I’m 19 and have been having severe chest pain (feels like I’m being stabbed through the left side of my chest) for over two years now. when it first started I was still seeing a pediatric Dr. who said it was due to inflammation in my intercostals or anxiety (which I do have), so she started me on anxiety medications which seemed to help for a while. Then the chest pain came back so I went to the Dr (now a different Family Dr). I was also having abdominal pains so she sent me to the Gastrointerologist who said it was due to acid reflux (which I have) and they started me on medication to prevent that as well as dietary changes. fast forward a few weeks, the acid reflux went away but I was still having chest pain. I was ordered to get a chest ultrasound done where it showed nothing abnormal about my chest.They found an abdominal cyst so i was to get a few MRIs and CTs done and the chest pain was kind of put aside. On my last follow up with the family Dr we revisited the chest pain, i was also presenting some lightheadedness which i thought was due to missing a couple days of the anxiety medication. she did an EKG which came back normal so she sent me to a cardiologist (i thought for the chest pain). At the cardiologist appt he addressed the lightheaded and dizzy feelings but didnt say a word about my chest pain. He ordered another chest ultrasound, a tilt table test, and for me to wear a heart monitor for a week. the past week ive had the ultrasound done (results will be back in a couple weeks), im wearing the monitor, and i had the tilt table test done yesterday. The cardiologists diagnosis after the TTT was that i had vasovagal..now after more research it sounds like i could have POTS. For those of you that have POTS, do you get severe chest pain like that? I seem to have almost all of these symptoms but chest pain is my most prominent one. Any advice?
Yes i definitely have chest pain at times with pots but i also have severe anxiety so it’s difficult to determine which is causing them at times, i truly hope everything gets better for you pots can be extremely unpleasant mine is absolutely terrible
I have POTS as well as a cardiovagal abnormality. I have best getting extremely bad chest pains lately especially. They are usually centered in between my left and right ribs in a triangle shape at the top. Along with it, I also have rib pain and side pain. Sadly I can’t tell you what it is, because I do not know at this point. Actually, I am going to Cleveland Clinic again in a few days to see what they think. Which I would suggest doing if you think you might have POTS and other drs tell you you’re crazy. Believe me. It’s basically part of the POTS initiation process at this point. I wish you luck and I hope, for your sake, that you don’t have POTS or anything serious 🙂
I always have a weight or tightness sensation when my BP starts dropping. Most docs don’t get it. They ignore that symptom. I finally stopped talking about that symptom. It wasn’t till I saw a POTS specialist that they told me it was a common symptom for POTS patients.
Hi, I was diagnosed this week with POTS and had been having intermittent symptoms for the past year and 3 weeks ago every symptom came on together leading to crushing heart pain where I was admitted to hospital and luckily the doctor I was paired with got a diagnoses in 5 days. I do have an under-active thryoid condition which may have contributed to this. The tilt test confirmed it for them and me and being upside down felt great and the brain fog completely disappeared along with the other symptoms and when they turned me back upright I was back to all the symptoms. I am now starting the recovery stage and already notice when I add salt to my meal I feel clearer in my thinking although it doesn’t help with the chronic fatigue or other symptoms yet. I accept it will take time to build myself up and plan to work very hard to do so. Thank you so much for creating this site for those of us around the world with this condition. It is my hope that I will become stronger over the coming weeks and months with the gluten free diet, added salt, increased water and hopefully build up to exercise again. We are hoping to avoid medication so I will be reviewed in 2 months – it’s a trial and error at this stage to see what is going to work best. To anyone reading this that is newly diagnosed like me I wish you all a speedy recovery and believe the more information and understanding we have about this condition will help us all become strong again so we can live our lives to the full.
Hi, I’m 16 and was diagnosed with POTS just over a year/year and a half ago. Similar to a lot of people it was quite a while to get a diagnosis as all my blood tests and EKGs came back perfectly normal. I’ve experienced every single symptom listed when I have “episodes”, but I’ve also had a few that aren’t listed. When I have a bad “episode” I will start to shake and turn ghostly pale. My body will then involuntarily curl into a ball (I end up sitting arms pressing into my sides, legs curled up, and my upper body curling towards my legs, head bent down). Then my hands bend themselves into fists and my wrists bend in as far as they can. When this happens I am completely stuck, no matter what I try I cannot move until it passes. My entire body can continue shaking and stuck in this position for 5-20 mins (or how ever long the “episode” takes to pass). I also go numb/ tingly over my entire body, especially around my mouth. Its extremely difficult to breath when this happens, and it feels like my lungs are being constricted, which then causes headaches that can last for weeks. However, I never actually lose consciousness fully, just experience really bad brain fog and can’t see/hear/comprehend what’s going on around me.
I’m not sure if this type of reaction is “normal” as most doctors I’ve seen tend to write off the symptoms and say that my blood work says there’s nothing wrong.
Has anyone else had this sort of reaction during an “episode”?
My daughter absolutely is like that. They diagnosed that years back as vasovagal syncope with seizure activity. But if this must have been her issue this long. I cannot believe what I just read. It happens alot to her! Thank you!
I have everything you listed only my shaking lasts for 6-48 hours…it is extremely painful and upsetting..and my doctors at the ER say the same there is nothing wrong your blood work is fine….they are crazy…….
Angie Willis says
I was diagnosed with pots in July of last year. Doctors are trying to tell me it’s all in my head. I still don’t understand about pots.
I enjoy looking through a post that will make people think.
Also, many thanks for allowing me to comment!
Shaundra Akin says
I was diagnosed with POTS a few days ago after multiple visits to the ER. They ran so many labs, took so many scans, and multiple other tests. Absolutely nothing wrong. They said my condition is a result of the Loop DS bariatric surgery i had 3 weeks prior.
I think my POTS is pretty severe. I could make it to the bathroom and back and would need to lay down and recover. I had scary fluttery racing heartbeat and nearly passed out several times. After they sent me home with my diagnosis, my symptoms worsened. Chest pain, inability to get enough oxygen, numbness in fingers, toes, and nose, among other things. I went back to the ER and they started me on a beta blocker until i can see the cardiologist. Now i think my blood pressure is too low. I have alot of trouble getting enough oxygen especially at night. Last night i stayed awake sitting upright on the couch to keep my heart rate up so that my bp wouldnt be quite so low. I felt like i was going to pass out and just stop breathing. I think i will be going to the ER again since i havent seen the cardiologist yet and i dont know who else could help me. This has been the scariest experience of my life.
I was just diagnosed with POTS on 8/8. This syndrome has left my life in pieces. I had a wonderful 29 year career as a hairstylist. I would stand for easily 10-12 hours 4 days a week. I have been a hiker, jogger, walker my whole life. Starting last December I found I was having a really hard time breathing, my first real symptom was chest pressure construction. Many miss diagnosis later I finally was diagnosed. I look back now and see I have had symptoms for years not realizing it. I have read a lot about people returning their lives from this disorder but I lost my whole career. I teemor to the point I could cut hair at all, can’t stand for more than 40 mins now. If I push myself at all I am stuck horizontal for days before I rebound. How in the world can anyone financially overcome this? I will never be able to stand and do what I love ever again. I am so active, my whole life revolves around physical activity. It feels like my life is over. From remodeling my home to gardening in the Arizona heat, hiking to kayaking. Will I ever be able to do anything I love again? And how in the world am I supposed to work ever agiain. Are there jobs they let you lay down on? I can’t even wash the dishes if I push myself to make dinner. This feels hopeless and to overwhelming to ever overcome.
Mary B says
I understand exactly where you are coming from. I haven’t been diagnosed yet but I have all the symptoms.
I would try calling physical therapy centers or the like and see if they treat POTS. You would think there would be a way to retrain your brain to send blood back up to your head. Don’t lose hope and research research research. I was a waitress and recently remodeled my whole house to sell. After I finished I got bronchitis and have been in bed since with this. Cant put my house on the market, cut the grass, walk my dogs. I feel like you do. Don’t give up. If you find something, tell your Dr. If he won’t listen, find one who will. I do not plan on giving up rollerblading because of this. This is just a speedbump as far as I am concerned. I do believe they have POTS physical therapy. Best wishes to you in your quest!!
I was recently diagnosed with POTS after struggling for awhile. If you have it or think you may have it, I encourage you to read my blog post about my diagnosis story. You may relate!
I have everything you listed only my shaking lasts for 6-48 hours…it is extremely painful and upsetting..and my doctors at the ER say the same there is nothing wrong your blood work is fine….they are crazy…….
I have POTS and more and it has turned my life upside down. Mine is related to any movement. I am on meds and take 2 to 3 salt tablets a day . Also the high salt diet. I get this strange feeling sometimes before it hits me. Its even harder when u live on your own and no help. I have no family or friends I live by. I am stuck in a wheelchair all the time. I also have leg problems and have had it for many years. I have been told by many doctors wrong mean things. I have a great heart doctor who told me what was wrong. I had waited 6 mos before I could even see one. It was scary not knowing if I was going to die at any moment. Everything takes so long to get or even help in my home. I have to force myself to just get out of bed because I have to I have no one. Soon I will have help in my home. I have pets and I have to use the microwave to be safe do to passing out. Its hard for anyone to understand what u live with every day unless they have this. Dysautonomia is a hard thing to except having do to everything it does to u. I would think I was doing to much and other things. I could never understand y weird things would happen to me and no answer. Once u get told and start learning about this your hole life starts to make sense. Even lil things when I was a kid now makes sense. U feel alone. U tell people and they think u r making stuff up or doing it to yourself. Its a hard thing to deal with when u went through so much and always will. U always wonder y me. What did I so so bad to have this happen to me. I have intestinal problems as well. I think many doctors do not understand anything much to people who have this. We end up going through so much tests and told nothing much. Just because we never knew what we had. I have to say we r strong people to deal with all we get in our lives from it. I am glad for this study and I have learned more from it. The only ones who understand u r the ones who get and have what u do. I do things very slow and what cant some one 30 sec to do it can take someone like me hours.
I have all if them but two. I was dealing with it for 6-12 months and once I felt too much pain in my head to get up and go. But the next time you see your doctor I’d say to them: ” please test me for it. I have done research for it, and I believe I have it. ” If you want to say more, you should say the exact symptoms you are having, and how long you’ve been having them. Say where you researched it too. Just remember that I didn’t have to deal with doctors not testing me. Another thing you can do is see a different doctor.
I am currently being tested for pots. I have all the symptoms but the most dominant is chest pain and shortness of breath with palpitations. Went to ER twice with chest pain because I thought I was having s heart attack. My EKG is abnormal but echo and stress test normal. My heart rate goes anywhere from 100-210 when standing and sometimes while just sitting. I have dizziness, muscle twitches in calves and I’m always freezing cold. I hope I can figure this out soon. I’ve always been an active person.
I will be seeing a cardiologist on Wednesday. I have suffered from these symptoms off and on for 8 years but they’ve been increasingly worse the last 12 months. My pcp suspects vertigo, vasovagal syncope and pots. I also have anxiety which makes everything worse. I’ve never dealt with anything like this and I’m curious what questions to ask my cardiologist. I will be scheduling a tilt test and whatever else he suggests.
Stumbling across this forum makes me feel less alone because this illness can be very isolating.
Any help or info would be appreciated!
Mary B says
I am so thankful for this site.
PROBLEM: When I take a shower, everything is fine until I am nearing the end. I start throwing up, get dizzy and lightheaded, my heart races, my face turns beet red, and I can’t breathe. If I open the shower curtain, and l have the ac on, when the cool air hits me it helps. I finish showering. Get out and sit on a shower chair trying to catch my breath. My heart is racing and I am still nautious, shaky and sweating profusely, even if it’s cold in the room. I am not back to myseIf for 24 hours. The symptoms go away, but I am wiped out.
I had lots of heart testing done 1 and a half years ago and everything was fine. I went to a pulmonary function specialist and had tests done. I have mild COPD.
HISTORY: This started 2 years ago after I had a bad bout of bronchitis and had to be hospitalized. My life has never been the same. I was diagnosed with hyperhomocysteinemia in 2012. B6, b12 and folic acid are all I take. I live in SE Tennessee and nobody I have seen knows how to treat hyperhomocysteinemia. But I know I am high stroke and heart attack risk.
LIFESTYLE NOW: I spend my days in bed and get up every 1/2 hour to get a pop or go outside and sit for 10 minutes with my 4 ankle biters, (small dogs). I gained 100 pounds over the last 5 years. The 1st 40 nobody could figure out why. The last 60 were caused by Fiancecheatedonme Itbrokemyheart syndrome.
I am 56/female and I am really struggling to have a life other than in bed.
I don’t know if this is POTS because I only have problems in the shower. I can stand at the fence and chit chat with my neighbor for 1/2 an hour, no problem. I do sit down when done.
If it is warmer than 85 degrees, it is like being in the shower, but not even 1/2 as bad. Short of breath, lightheaded, nausea.
I don’t know what is going on, who to see or anything. I am not from TN. This has destroyed my ability to live a normal life. It has also destroyed my hopes of selling my house. I get to short of breath to clean.
Can anyone give me some direction? Thankyou
ROGER PACK says
There is a reputable POTS clinic in cleveland, maybe they could help you out…
MD PhD here halfway through heme/onc fellowship when this crippled me and got me kicked out of my program. Gotta say even as a future physician with a documented uncontrolled EBV response and every single sign listed up there for the last 6 mos, I still denied I had POTS as recently as a week ago. Saw a cardiologist who gave me propranolol. The whole right side of my body was swollen since my heart just couldn’t take the attacks of heart rate and high blood pressure anymore. Left me near bed bound for almost 2 weeks. Propranolol and stimulant have given me my life back….so far. I’ve also always sworn that stimulants helped me with both cognition/circulatory issues prior to diagnosis as I have raynauds/lupus/acrocyanosis. I would imagine many get the adult ADD label in 20-30s and this my be the first flag that flow in the brain just isn’t right and to check for POTS in an otherwise healthy, active individual.
I have POTS and chronic fatigue. Am now looking at the McDougall diet for autoimmunity. People on McDougall diet can sometimes be healed of symptoms of other autoimmune diseases (even MS, rheumatoid arthritis and others) I am hopeful that this vegan diet will help me. Am only 2 wks into it.
Has anyone else tried this?
Wendy Adams says
My 11 yo granddaughter was diagnosed at 7 with Hashimoto’s Thyroiditis. In January she began having issues with regulating body temperature and blood pressure. She shakes very noticeably and will get pale. She has become faint and nearly passed out. Her GP and I thought it was her thyroid causing these symptoms, like a thyroid storm. On April 19th her overly large thyroid was removed. These symptoms continue. I’m concerned for her since she is so young. I am taking this information to her doctor so we can watch and test her.
I’m in the process of getting the tilt table test done. It’s only been 4 years, but it’s been a hellish 4 years. I got infected with Lyme, RMSF, Bartonella, and Babesia 4 years ago from 1 tick I barely remember. Because I just had a baby, didn’t present the textbook rash (had a different, strange spotted rash started at bite site) I didn’t get treated right away or diagnosed right away. By the time I got proper testing and treatment my nerves had been damaged to the point of experiencing Dysautonomic problems. I’m at year 4 with much improvement and healing, but I still seem to be having the dysautonomic problems. My PCP and LLMD both suspect POTs amongst other issues. Racey heart, fainting spells, extremely low BP, tremors during a flare up, abdominal pain and gastro issues, musculoskeletal issues, odd or abnormal occasional EKGs, shortness of breath, temp disregulation, etc etc. Until my official diagnosis, we’re trying alternative therapies like saline IVs to help increase blood volume. I eat a little more higher sodium diet, and work on exercises that strengthen my leg muscle to help with blood flow/circulation. I also go weekly for cupping and acupuncture to deal with alot of the musculoskeletal pain and nerve overractivity. My menstrual cycle is what still seems to unbalance my symptoms, when my period hits I get the worst of the worst flare ups and issues, and it lasts until my hormones level back out. Hoping there’s more that can be done to control symptoms, I want my life back.
No one believes me & CORRUPT$$$ Medicare doctors do NOT recognize it as a disease. Can’t leave the house anymore- I am going to die in my basement of a heat storke with the A/C running 🙁 No one cares 7 family thinks I am crazy. See all you CROOKED$$$ docs in HELL!!
Can someone tell me if the tilt table test results are only a snapshot of that particular moment ? I have been suffering from all of these symptoms on the page off and on for over ten years. I recently had a tilt table test done, and the results came back fine. My neurologist said I was not suffering from any autodysnomatic issues. I asked him if at the moment of the test I was okay, but could suffer symptoms at other times and he said no. That the test would have shown something. Three days later, i stood up from a kneeling position and passed out. Part of me is thinking that these symptoms are not going to be always happening at the exact moment of these tests. Any thoughts? Thank you in advance from a very frustrated and upset guy.
Gloria Rose says
If you regularly do aerobic exercise, you may have your heart in such good condition that you pass the tilt table test but may still have POTS.
To Old to be diagnosed …?!
Such an interesting article! Makes me think maybe I need to bring this up to my doctor
Jon H says
Super helpful article. I knew next to nothing about POTS a few years ago, but now have a family member going through treatment. Detailed guides like this are must-reads!
Gloria Gene Rose says
Be very careful if a physician starts prescribing Xanax or other benzos and barbituates. Make certain that anxiety is really the issue. If you stay on them, withdrawal is terrible, especially if your physician jerks them away without tapering slowly. Ask lots of questions, then check for yourself what information (and there is a lot) about the proper way to stop taking the drugs. Too many physicians don’t really know the seriousness of prescribing these drugs.
Zhi Gro says
As usual – everything you will read below is a personal experience and as with anything else with POTS may be highly subjective and if it worked for me may not work for you.
I am male(45yo) with POTS. Got it 2 years ago, but had signs of it coming or maybe mild symptoms to say 5 years prior that.
Anxiety – the physical symptoms – is one of the worst sides of POTS if you ask me. Having the adrenaline rush through your body and try fix problems that your autonomous system created, just to end up creating even more problems is one nightmare that kept repeating again and again.
I did find a way to manage it somewhat though.
Prior being properly diagnosed(tilt table) my cardiologist thought I am having anxiety and did prescribe me Xanax – the usual for many of you I would guess. Now that worked, but I know its dangers so I took it once or twice at my worst and the rest of the days I had to plow through on will power.
Believe me, will power has its limits if there is no hope…..
I started searching the internet on safe Xanax alternatives and to my surprise I found one. And it worked!!!
Here is the research paper:
Read it first and then continue with my post.
The brand in the research Silexan, but in US the same thing is sold as “Nature’s Way CalmAid” . You can find it anywhere(including Sprouts, Amazon and so on) and try it.
For me it is was non addictive(research claims the same so that is the reason I did try it) with no side effects except upset stomach on occasion. You do get the lavender burps though ?
Initially I took 1 tablet in the morning and one tablet at night. 3 months later I moved to one tablet at night only and two months later I did stop it completely.
When I take it, the effects I experience are similar to those from Xanax, without the drowsiness. It is not that fast though so you have to give it good 30min to 1hour to start working. That is the reason I still carry one Xanax pill with me for the past year and a half – if worst comes to worse and I need something fast acting I have it. Have never used it though ?
This is not a cure for POTS. This is one of the best crouches I found to help me function somewhat normal.
I did find some other stuff that do also help and will write more detailed post later.
I hope you all feels better soon!
I am sharing this with you as it took me a lot of time before I found it myself through my research and if somebody else have told me earlier I would have suffered way less. I don’t care if anyone thinks I am promoting a product or anything like that, as I said in the beginning – this is my personal experience.
POTS sucks….big time.
I had covid & then developed POTS. I was a very healthy & fit woman. I could run miles before I caught covid & I had a very physical job. Now I can’t even work due to my POTS. Please get your covid vaccines
Please don’t tell people to get a covid “vaccine” until you research the fact that many people get POTS after receiving the “vaccine”. Misinformation can be dangerous.
Yes your misinformation is dangerous!
Buffy Maynard says
My tilt table test showed my heart rate went up to 130 and stayed there when tilted up – 70 when laying flat. Not sure if it’s pots though because my echo shows I have arterial septal aneurysm? Trying to figure out… is this related or completely a different thing? See the cardiologist Monday, so I will try to have awnsers then…
Stephanie Appel says
I have been struggling with fainting spells, dizziness, extreme fatigue, anxiety, consistent headaches, and some other problems that fit in the POTS criteria. I’m 20 and I have been to the ER multiple times regarding these problems. I’m a college athlete and yet I cannot stand for longer than 10 minutes without feeling faint. My doctor recommended me to a cardiologist who did one orthostatic test and brushed off POTS immediately because I didn’t fit all the criteria (being only bladder dysfunction not bothering me). I am intent that I have POTS as it would explain every problem I’ve had physiologically and psychologically. My doctors won’t listen to me and I don’t know what to do anymore. I’m currently in a 30 day heart monitor and am struggling to find the strength to keep pursuing a diagnosis. Any suggestions? I’m desperate.
I’ve been dealing with heart palpitations for 15 years now. I finally saw a cardiologist last year because it was started to really get to me. My symptoms are as follows:
My baseline heart rate is usually around 80bpm but when I stand up it jumps to 120+
Sometimes I randomly get hot and might start to sweat other times I’m cold even when it’s warm
Caffeinated coffee sends my heart rate over 100bpms
eating sometimes causes palpitations
exercising sometimes makes my gumline ache
I have a hard time with up and down excercises because I get a bit dizzy usually (not all the time) with tunnel vision
standing up from laying down or sitting on the floor usually causes tunnel vision
my heart rate spikes over 100 every hour at night while sleeping
It does not take much to work up a sweat any time of year
Sometimes walking up stairs causes lightheadedness and tunnle vision, but not every time
sometimes I get random palpitations regardless of what I’m doing
Sometimes my hands shake slightly
Once in awhile I will get a random ache in my chest or a sharp pain in a joint, but not very often
I get the occassional dull headache that won’t seem to go away with medication
They did blood work, a stress echo, several EKGs, an echo, and I wore a monitor for 24 hours twice and they said everything was working as it should. I was told that I’m not actually tachycardic, but rather I become tachycardic very easily and I’m sensitive to any and all kinds of stimulants (i.e. caffeine, environmental, etc.). My blood pressure is fairly normal when I check it myself, but tends to be elevated when at the doctors. The cardiologeist told me that they don’t know why my heart rates spikes, but everything is working like it should and might be anxiety although my therapist said she does not believe it is related to anxiety since my anxiety is situational… It was my therapist who suggested I looking into POTS. Is this something that I should push to have looked into??
Orthostatic means caused by upright posture not dizziness. Please change this. There are people who have POTS that do not experience dizziness, but they experience palpitations and tremors. Please update this. The world is hard enough for POTS patients without an otherwise awesome and helpful page having inaccurate information.