FREQUENTLY ASKED QUESTIONS
What kind of doctors diagnose POTS?
POTS is most often diagnosed by a cardiologist or neurologist but many types of specialists can diagnose, and treat, POTS. Other known POTS specialists have been internal medicine doctors, geneticists, family doctors, etc.
I have ___, ____, and ___ symptoms, do you think I have POTS?
I cannot answer this question with accuracy or confidence. However, I can restate the diagnostic criteria for POTS: an increase in 30+ beats per minute upon standing. That's it. You do not need a drop in blood pressure. Doctors MUST rule out other reasons for the increase in heart rate before officially diagnosing you with POTS. But if you have this increase in HR, along with the typical POTS symptoms (that can be found in a question above), POTS is definitely something worth looking into. Autonomic testing (which I go into more detail above as well) is often used to diagnose POTS but is not necessary if autonomic testing is unavailable. A test called the "poor man's tilt table test" can be done instead and clear instructions can be found online and given to your doctor.
How long did it take you to receive your POTS diagnosis?
Only 3 months which is relatively quick for what the average is (6 years from initial onset of symptoms to receiving an accurate POTS diagnosis). My mom is an author and an intelligent researcher so she was able to come across POTS online when I was bedridden.
What symptoms made you/your doctors consider a POTS diagnosis?
My ridiculously high heart rate (140 lying down, 180+ standing), constantly feeling like I was going to pass out and being bedridden by this, low blood pressure, neuropathy, chest pain, migraines, and severe fatigue.
What kind of doctors do you currently see?
I currently see the following kinds of doctors:
What can cause POTS?
What are the most common POTS symptoms?
The most common symptoms are tachycardia (high heart-rate), presyncope, dizziness, lightheadedness, syncope (fainting), GI pain, nausea, neuropathy (nerve pain, numbness, etc.), migraines, brain fog (memory loss, concentration issues, depersonalization, feeling "spacey"), fatigue, chronic pain, muscle weakness, inability to stand or sometimes sit for a normal amount of time, blood pooling, tremors, numbness (especially in extremities), chest pain, palpitations, shortness of breath, vertigo, insomnia, GI and bladder issues, exercise intolerance, blurry vision and/or visual snow, abnormal pupil dilation and constriction, Raynaud's Syndrome, inability to sweat in some patients and increased sweat in others, heat intolerance, neck/head "coat-hanger" pain, inability to regulate temperature, and extreme thirst.
What is Dysautonomia?
Dysautonomia is an umbrella-term used to describe several different conditions resulting from a malfunctioning autonomic nervous system. POTS is a form of Dysautonomia.
How is POTS diagnosed?
POTS is most often diagnosed through extensive autonomic testing but when that is unavailable a poor man's tilt table test, an educated process of elimination, and symptom observation can diagnose POTS. An educated process of elimination would include performing tests for any other condition that could mimic the symptoms of POTS (an echocardiograhm to rule out heart diseases, etc.).
What is autonomic testing?
Check out this link to learn about autonomic testing:
What is the prognosis for those with POTS?
Unfortunately POTS is a chronic condition with no known cure. However, with treatment many patients with POTS see substantial improvemenet. Remission is also common with some POTS patients but can often be accompanied by an increase in symptoms eventually (but it doesn't mean it'll be as bad as it used to be). I've also known many patients with POTS to live a somewhat normal life after finding the individualized treatment plan that works best for them.
What can I do when my doctor won't listen?
This is an extremely frustrating and common experience from those with POTS. You will most likely have to fight for a proper diagnosis because of medical issues at the institutional level. You will learn to become your own patient advocate.
If POTS is an autoimmune condition, will it show up on an ANA test?
Current ANA tests do not detect for POTS, however, those with POTS are more likely to have a positive ANA test due to comorbid autoimmune conditions.
Do you exercise with POTS? What kind of exercises do you do? I find it really hard to exercise but am trying to.
Yes! After becoming bedridden for more than 6 months I started my own "exercise protocol" which included me sitting up for 30 seconds a day and doing ankle and wrist rotations. That's it, seirously. Then I increased what I did each week and made very slow progressions for over 20 weeks before starting the first pre-month of Dr. Levine's POTS exercise protocol. After looking at the pre-month and organizing my exercise at home around his ideas but for shorter durations as I couldn't handle it yet. I had also asked my family doctor to refer me to a cardiac rehab program. It took me around 6 months to get in and by that time I could actually do the first premonth of Dr. Levine's POTS exercise protocol. This cardiac rehab program was free for me to do and was a twice-a-week exercise program. It took place in a small room with a nurse and a personal trainer and I was the youngest person in this class by decades (most patients were elder men with heart issues or middle-aged men with diabetes).
You need a family doctor to e-mail the following e-mail to request a copy of his program:
Should someone with POTS get the flu shot?
I'm not sure about "should" but I'll share the reasons behind why I do.
How do you know POTS is an autoimmune condition?
Because the research has been pointing to this:
Have you been tested for Hyperadrenergic POTS?
Yes and I do not have it.
How does one get diagnoed with Hyperadrenergic POTS?
From my understanding, it's a very specific blood test done while lying down and while standing.
Do you get regular saline infusions? Have you found them helpful?
No! My doctor, who is a POTS specialist, does not recommend people with POTS get regular saline infusions. However, some specialists might say otherwise. Saline infusions only help me if I'm extremely dehydrated or am in a flare.
Are dialated pupils a common symptom of POTS?
Do you need a tilt table test to diagnose POTS?
Not every city/hospital or even province/state will have a Tilt Table available. I was initially diagnosed based on symptoms and a "poor man's tilt table test" (you can google this to find out more details but it's basically taking your blood pressure while lying down and while standing). There was no known Tilt Table in my province at the time. Years later, I had a Tilt Table Test that confirmed my diagnosis.
What is the difference between POTS and orthostatic intolerance/hypotension?
Orthostatic intolerance is a symptom: it basically means you have an intolerance to standing upright. POTS is one form of Dysautonomia and Orthostatic Hypotension is another. With Orthostatic Hypotension, your blood pressure drops below a certain number when you stand, which could also cause your heart rate to increase in order to compensate. With POTS, your heart rate increases 30+ beats when standing, with or without the drop in blood presure.
To learn more about the difference, check out this article:
Do you have to faint to have POTS?
Nope! Leading POTS specialist Dr. Satish Raj has found through his research that most people with POTS actually do not faint on their tilt table test. He says it's more of a presyncope (that feeling you feel right before you're about to faint: lightheadedness, dizziness, etc.) condition than a fainting condition. Fainting can be a symptom of POTS but it's not diagnostic criteria.
"I have POTS but I don't have very low blood pressure, sometimes it's normal or even high, is this normal?"
Blood Pressure is not a diagnostic criteria for POTS. Some people with POTS have normal blood pressure until it suddenly drops, other people have consistently low blood pressure, and other people can even have high blood pressure (especially if you have Hyperadregeneric POTS). If you are on medications to increase your blood pressure, this could also be altering the readings you get. Talk with your doctor if you have any concerns.
Can you drive with POTS?
Whether you feel comfortable to drive with POTS or not is a personal question. If your doctor doesn't think you're able to drive, that's up to them. I personally can and do drive, but I didn't drive for the first year and a half after I developed POTS. I slowly re-learned how to drive and it was awkward and over-stimulating at first but now I do it daily with no issues. However, I make sure to take my stimulant medications (Modafinil and Midodrine) before driving and do have issues staying concentrated for longer than an hour so driving for longer than that requires breaks and extra focus for me.
Is shortness of breath a common symptom with POTS? How do you cope with this?
Yes! This is a common and debilitating symptom. This symptom was so debilitating for me when I first got sick, and it got worse the more deconditioned I got (the longer I was bedridden for). What helped me was Biofeedback, Dr. Levine's POTS exericse protocol, and mullein tea. I brought a small biofeedback machine with me everywhere and did biofeedback whenever I had to move locations (like from my bedroom to the car to go to a doctor's appointment). Dr. Levine's POTS exercise protocol would temporarily make my shortness of breath worse, but over time it made it so less things would trigger my shortness of breath. My mom would prepare mullein tea for me after every "exercise" session (of like 3 minutes on the bike going as slow as possible). She would put ice cubes in it after steeping it because hot tea makes me feel hot all day (heat intolerance is a symptom of POTS).
Are you really sensitive to medications?
Yes I am hypersensitive to all medications. The current medications I'm on are lifesavers to me but I had a lot of issues finding the right dose. Any dose I've tried but am not currently on hospitalized me with severe symptoms. This is probably due to a combination of both POTS and my Mast Cell Activation Disorder.
Do you get car sick with POTS?
I used to experience "rocking vertigo" (feeling you're rocking back and forth like on a boat) whenever I was in a car but now I only experience mild to moderate car sickness if I'm in the back of someone's car for a long period (a situation I'm almost never in).
What triggers a flare of symptoms for you?
The longer you've had POTS, the more you'll learn your own unique triggers. Standing upright for long durations, especially without having the ability to pump the blood back to your head (through calf raises, squats, or walking) is a fairly standard trigger for most people with POTS. I have also found that eating large meals, long days without breaks, stress, and trying new medications can all temporarily increase my symptoms. Nowadays, since my health has been more stable (still symptomatic but more stable/predictable), stress, going without breaks, and catching a virus are the main triggers to increase my symptoms for a number of weeks.
My POTS symptoms get worse around my period, is this normal? What helps?
Many women experience a worsening of their POTS symptoms when they're on their period, and/or the days leading up to their period. Some women on POTS are prescribed birth control for this reason, while other people may find their symptoms worsen on birth control. Here is some information about why people with POTS may experience an increase in symptoms while on their period:
Pregnacy and POTS? Is that an option?
Many people with POTS have and do get pregnant with POTS. However, this is a personal decision for you to make with the help of your doctor.
Here are some studies about being pregnant with POTS:
What is Mast Cell Activation Disorder (MCAD/MCAS)?
What comorbid conditions do you have?
I have been diagnosed with Ehlers-Danlos Syndrome (EDS), Chronic Fatigue Syndrome (CFS/ME), Mast Cell Activation Disorder (MCAD), Occipital Neuralgia, Craniocervical Instability (CCI), Scoliosis, Hypothyroidism (as a result of a hyperactive thyroid tumour), SIBO, and adrenal fatigue in addition to POTS.
What conditions are most commonly comorbid with POTS?
Have you ever been tested for Lyme disease?
Yes, extensively, by a lyme-literate doctor and I do not have Lyme disease
Why is POTS frequently comorbid with specific conditions?
How is adrenal fatigue diagnosed?
What medications are you on for MCAD?
My MCAD has been controlled well on Ranitidine and Cetirizine. Ever since increasing my Low-Dose Naltrexone, I've been able to go off of Ranitidine and am now only on Cetirizine.
What kind of doctor diagnosis MCAD/MCAS?
I was diagnosed by an immunologist/allergist.
Do you have Chiari Malformation?
No. I had an upright MRI because I had many Chiari symptoms (some have gone away and some have stayed). I sent the MRI films to the Chiari Institute and a couple other doctors in the States.
Do you have Gastroparesis?
Do you have any GI conditions?
How long have you had POTS?
My first POTS attack was January 20th 2014 but I've had mild to moderate symptoms my entire life. Before January 20th 2014 my symptoms included chronic daily neck pain and migraines, fatigue, heat intolerance, and a terrible memory. I thought all of these symptoms had to do with my neck pain but didn't have a known cause for my neck pain. I now know that it was caused by my genetic condition, and cause of POTS, Ehlers-Danlos Syndrome (EDS).
What medications are you currently on?
Metoprolol, Gabapentin, Midodrine, Modafinil, Ranitidine, Cetirizine, Escitalopram, Synthroid, and Marvelon.
What medications have you tried in the past?
I'm going to try to recall all the medications I've tried for POTS and comorbid issues since my first POTS attack in January 2014.
-Lyrica for nerve pain (breathing issues)
-Florinef: did not make me feel better overall and gave me random blood pressure spikes, had me gain weight and tons of acne
-Ortho Tri-Cyclen Lo: birth control used to treat the acne Florinef left me with months after trying and this medication triggered what we think might have been seizures (but I handled Marvelon well).
How old were you when you developed POTS?
20 but I had mild to moderate symptoms my whole life
Do any of your family members have POTS?
No. My mom has Ehlers-Danlos Syndrome though and her mom does as well, although they did not know it until I was diagnosed with POTS.
What conditions do you have?
I have been diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), Ehlers-Danlos Syndrome (EDS), Chronic Fatigue Syndrome (CFS/ME), Mast Cell Activation Disorder (MCAD), Occipital Neuralgia, Scoliosis, Craniocervical Instability (CCI), hypothyroidism (as a result of radioactive iodine treatment for a hyperactive thyroid tumour), SIBO, and adrenal fatigue.
Do you have any siblings?
3 younger brothers and 1 "sister" (used to be our foster sister for a year but I still consider her a relative) who is married with a baby boy I refer to as my nephew. Her and her little family live up north so I don't seem them often.
Do you believe in a God?
Yes! I am a born-again Christian and He's the #1 reason I've made it this far. I was raised Catholic and then became an Atheist during my first years of University and am now a born-again Christian.
Do you have a service animal?
What diet has helped the most with your symptoms?
A high protein and carb vegan, low fat diet personally works the best for me. Any processed food makes me feel sluggish but I will allow myself to indulge in social settings. The lifestyle diets I have tried include: the FODMAP diet, paleo diet, vegan paleo diet, vegetarian diet, pescetarian diet, and low-histamine diet.
What vitamins/supplements do you take?
I've tried probably at least 50 supplements but the ones I currently take (and why) are:
What alternative treatments have you tried?
I have tried almost all alternative treatments I have learned from researching POTS and chronic illnesses. From the top of my head I've tried everything from a TENS machine at home, trying to heal a leaky gut, acupuncture, massage therapy, chiropractic care, physiotherapy, all kinds of supplements and vitamins, essential oils, multiple diets, injections, biofeedback, neurofeedback, osteopathic care, naturopathic care, homeopathy, etc.
What does your daily life look like? How do you manage your symptoms?
What products help you manage your POTS?
Has a gluten-free diet helped you with your symptoms?
After I got sick, I ate gluten-free strictly for 1 year and 90% of the time for 2 more years after that. I did not notice a shift in symtpoms upon stopping gluten or upon starting to increase a little bit of gluten in my diet. However, I still try to avoid it when possible because I know it can increase inflammation which isn't helpful for an auotimmune condition. I do not have gluten sensitivity or any immediate issues with gluten but if I eat a ton I will experience an increase in my fatigue, brain fog, and lightheadedness from blood pooling in my digestive system (along with most other heavy meals). At home I do not buy gluten except for the rare occasion.
Has a dairy-free diet helped you with your symptoms?
Yes but I've avoided dairy most of my life. I was born allergic to milk (I was very sick) and eventually just became lactose-intolerant. I think that I've become a lot more tolerant of it because I haven't had much dairy in a long time. However, I know it's an inflammation-producing substance so I try to avoid it because POTS is an autoimmune condition.
Do you use a mobility aid?
No I do not but I used to use a wheelchair full-time and then part-time. If I went to somwhere like Disneyland I'd definitely need a wheelchair but I can walk around 20 minutes now without issue.
How do you deal with brain fog?
What are your worst symptoms?
What tips do you have for studying/school? Especially with brain fog?
What do you do to distract yourself from the pain?
Can you drink coffee with POTS?
A lot of people with POTS do not handle coffee well. The caffeine increases their heart rate and causes dehydration. I completely cut out coffee as soon as I got sick but decided to slowly introduce it around 7 months into my POTS journey because of intense fatigue. I personally rely on 2 small cups of coffee with rice milk, bulletproof oil, and no sugar each morning to improve my energy and concentration. However, it's definitely not for all Potsies. I think it depends what your worst symptoms are. My heart rate is controlled by my medication but my fatigue and brain fog continue to be my worst symptoms. I stay hydrated with water and electrolyte drinks throughout the day to counteract the dehydrating nature of coffee.
How do you deal with fatigue?
What are your experiences with essential oils?
What essential oils would you recommend?
What is biofeedback?
What was your experience like at the Texas POTS Biofeedback Centre?
What symptoms has biofeedback helped you with?
How do you cope with shortness of breath caused by POTS?
What is neurofeedback? Has it helped you?
What is Ehlers-Danlos Syndrome (EDS)?
What pain medications are you on for EDS?
Right now I am only on Gabapentin for pain management. However, Metoprolol and Escitalopram have also helped mildly with some pain. This combination barely helps my pain but I'm hypersensitive to medications and it's all I can handle at the moment.
What kind of doctors diagnose EDS?
Any trained specialist can diagnose upon examination and review of patient history. However, a geneticist is recommended as Ehlers-Danlos Syndrome is a genetic condition. A geneticist will use the beighton score and brighton criteria and may order genetic testing.
I have ___, ____, and ____ symptoms, do you think I have EDS?
What kind of alternative treatments have you tried for EDS?
Vitamin C supplementation is often recommended for those with EDS. I also do physiotherapy, have tried acupuncture in the past, and use naturopathic care for my comorbid conditions.
What conditions are often comorbid with EDS?
There are many! Check out this link to learn more:
What is your experience with EDS and surgery?
I have surprisingly not had any surgeries besides gum recession surgery (as a result of EDS). I have a few surgeries being talked about for this upcoming year so I think my initiation into the fun with EDS & surgery will be happening soon (sarcasm hopefully to be detected). My mom has had several surgeries all over her body as a result of EDS complications though.
Do you dislocate a lot?
I don't completely dislocate very often. My mom does though.
Do you experience a lot of joint pain?
Yes. However, my muscle and nerve pain is worse for me personally.
What is the difference betwen joint dislocations and subluxations?
Do you subluxate a lot?
How can I know if I have vascular EDS?
A geneticist will diagnose Vascular EDS.
What kinds of complications can EDS cause?
The potential complications depend on what type of EDS you have.
What kinds of doctors do you see for EDS?
I see a Geneticist, a Gastroenterologist, Cardiologist, Neurologist, 2 Opthamologists, a team of doctors at a Complex Disease Program, a team of doctors at a Pain Clinic, and an Endocrinologist for my EDS.