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How to diagnose pots

To make a diagnosis of OH (NMH) or POTS, a certain set of conditions or criteria need to be met. This set of criteria has been set as guidelines by the physician specialists in cardiology and neurology.

The definition does not require special testing to get the information about blood pressure, pulse and symptoms. The information can be collected in the physician’s office or through a clinical study like a tilt table test.

Criteria:

First,a person lies down for 5-20 minutes. Then the blood pressure and pulse are taken lying down. Then, they stand up. A person is thought to have POTS if in the first 10 minutes after standing the following 2 things happen: 1,2
• their heart rate goes up at least 30 beats per minute OR it goes higher than 120 beats per minute AND
• they get orthostatic symptoms.

This is the criteria used for adults. Some of the studies suggest that the heart rate may be higher with children and adolescents who have POTS.

Some will call it “mild orthostatic intolerance’ if the heart beat goes up more than 30 beats but it doesn’t get to 120 bpm 6 .

BP changes: The blood pressure may stay the same, have a small decrease or there might be a small increase. 7

Some believe other factors should be considered:
» The person is not on any medication that would affect the vascular or autonomic tone 3
» The person has not been on prolonged bedrest. 3
» The person should have had symptoms for more than 3 months. 1
» Other autonomic symptoms that may be present: abnormal sweating, altered ability to regulate body temperature and changes in the bowel and bladder function. 1

References
  1. Grubb BP. Postural tachycardia syndrome. Circulation. 2008;117:2814–2817. Abstract. ArticlePDF.
  2. Medow MS, Stewart JM, Sanyal S, Mumtaz A, Stca D and Frishman WH. Pathophysiology, Diagnosis, and Treatment of Orthostatic Hypotension and Vasovagal Syncope. Cardiology in Review 2008;16(1):4-20. Abstract
  3. Grubb BP, Row P, Calkins H. Postural tachycardia, orthostatic intolerance and the chronic fatigue syndrome. In: Grubb BP, Olshansky B, eds. Syncope: Mechanisms and Management 2nd Ed. Malden, Mass: Blackwell/ Future Press; 2005:225–244.
  4. Thieben MJ, Sandroni P, Sletten DM, et al. Postural orthostatic tachycardia syndrome: The Mayo Clinic experience. Mayo Clin Proc. 2007;82:308–313. Abstract.Article PDF.
  5. Moya, Guidelines for the diagnosis and management of syncope (version 2009). European Heart Journal (2009); 30: 2631-2671. Abstract. Article PDF.
  6. Low PA, Sandroni P, Joyner and Shen W. Postural Tachycardia Syndrome (POTS). J Cardopvasc Electrophysiology 2009; 20:352-358. Abstract. Article PDF
  7. Low P, Opfer-Gehrking T, Textor S, Benarroch E, Shen W, Schondorf R, Suarez G,Rummans T. Postural tachycardia syndrome (POTS). Neurology. 1995;45:519–525. Abstract.

Author: Kay E. Jewell, MD
Page Last Updated: June 26, 2012

What is PoTS?

PoTS stands for postural tachycardia syndrome. First characterized and defined in 1993.

PREVALENCE is estimated to be 0.2%.

Abnormal response by the autonomic nervous system to upright posture. In some, mechanism is lack of vasoconstriction on standing causing pooling of blood in abdomen and limbs, reduced venous return to heart, compensatory tachycardia and altered cerebral circulation.

Most common in females age 15-50

DISABILITY – equivalent to disability in heart failure + COPD

ASSOCIATED WITH

  • hypermobile Ehlers-Danlos Syndrome and hypermobility spectrum disorder
  • chronic fatigue syndrome /ME
  • after viral infections eg post-COVID 19, glandular fever
  • autoimmune conditions
  • growth/puberty in children

When to suspect PoTS

SUSPECT PoTS in

  • medically unexplained symptoms
  • CFS/ME
  • hypermobile patients
  • Long-covid

Symptoms

3 commonest symptoms are

  • lightheadedness (presyncope)
  • fatigue
  • palpitations

Other symptoms include

  • fainting
  • nausea, bloating, abdominal pain
  • cognitive dysfunction – ‘brain fog’
  • poor sleep
  • exercise intolerance
  • shakiness, sweating
  • postural headaches and migraines

SIGNS *occur on standing/prolonged sitting*

  • tachycardia
  • acrocyanosis – red/purple puffy hands and feet (50% of patients)

How to diagnose PoTS

DIAGNOSTIC CRITERIA – Sustained increase in heart rate of 30 beats per minute (40bpm in teenagers) from lying to standing associated with symptoms of PoTS

STAND TEST – rest supine and record HR and BP. Then stand in a safe place and record BP and HR every 2 minutes to 10 minutes

INVESTIGATIONS – ECG. Exclude anaemia, hyperthyroidism, postural hypotension, phaeochromocytoma

MISDIAGNOSIS – Mean time to diagnosis is 7 years. Meantime 50% of patients receive a psychiatric misdiagnosis e.g. anxiety, depression, hypochondriasis. Other misdiagnoses – CFS/ME

REFERRAL – To a specialist with an interest in PoTS-there is a list on the PoTS UK website :https://www.potsuk.org/specialists

How to manage PoTS

AVOID TRIGGERS – heat, large meals, alcohol, drugs that lower BP

FLUIDS – at least 2 litres/day in adults

SALT – Adults: +6g/day (unless contraindicated)

EXERCISE – initially supine, graduated regimen, can take 2 months to improve symptoms

POSTURAL MANOEUVRES to avoid fainting – avoid prolonged standing, elevate legs, tense buttocks + thighs, fold arms, tiptoe

COMPRESSION – class 2, waist-high tights

DRUGS -include β blockers, calcium channel blockers, ivabradine, midodrine, fludrocortisone, clonidine, SSRI, desmopressin, pyridostigmine, octreotide

CBT – to help adjust to chronic illness

IV FLUIDS – in an emergency only

A blog about Postural Orthostatic Tachycardia Syndrome
for tweens, teens and everyone else interested in POTS.

HOW TO FIND A POTS DOCTOR

If you suspect you have POTS or if you already know you have it and you’re not having any luck finding a doctor who can help you, please do not give up. Some people have been diagnosed with POTS after 14+ years of passing out and not knowing why. There are not enough doctors who specialize in POTS to treat all of the people who have it. Some of the best experts have a three year waiting list.

It took me 9 months to get a diagnosis and that is actually pretty fast compared to other people. I went to over 30 different specialists, I had dozens of Emergency Room visits, and I ended up being admitted to the hospital three different times, to five different hospitals (for a total of 3 months in the hospital in one year) and NO ONE, not even the big shot neurologists, cardiologists and medical school professors I consulted with could figure me out. I misdiagnosed with all sorts of ridiculous diseases – neuroendocrine cancer, croup, bronchitis, pleurisy, panic attacks, etc. I didn’t have any of those things. Seriously, when is the last time bronchitis caused someone to lose 60 lbs. and pass out every day for months on end?

I found out about POTS on my own through internet research. I printed out several journal articles on it from Mayo Clinic and then asked my neurologist if I could have it. It just seemed to fit my long list of symptoms. My neurologist admitted that he didn’t know much about it, but he read the materials I gave him and then he checked in with POTS experts at other medical centers. They discussed my case by phone and agreed that I had it.

After I was diagnosed with POTS, it took me a really long time to find a doctor who really had some expertise in autonomic disorders to help me identify the underlying cause of my POTS – which turned out to be an autoimmune disease (Sjogren’s Syndrome). I ended up going to Cleveland Clinic in Ohio. I saw a number of doctors there, but the one who figured out the cause of my POTS and autonomic neuropathy has left Cleveland Clinic and opened a up a new autonomic practice in Norfolk, Virginia. His name is Dr. Kamal Chemali and he was great.

The Dysautonomia Information Network maintains a list of doctors that have expertise in this field from around the world, however I found some of their listings to be out of date or inaccurate (i.e., the doctor has moved, retired, is no longer taking new patients, etc.).

Author and POTS activist Jodi Epstein Rhum has a list of autonomic doctors on her website.

If none of these doctors are in your area, try calling your local neurologist’s or cardiologist’s office or the neurology or cardiology department of your nearest “big” hospital and asking if they can recommend a doctor that is familiar with autonomic disorders.

Since there are so few doctors with POTS expertise, many people with POTS end up traveling to the Mayo Clinic in Minnesota, the Lahey Clinic in Boston, the Cleveland Clinic in Cleveland, Vanderbuilt University’s Autonomic Dysfunction Center in Nashville, or Dr. Blair Grubb in Ohio. Also, Columbia Presbyterian in NYC has a Syncope Center that should be able to run some of the more obscure autonomic tests on you – but I think any of their doctors really focus on POTS.

I’ve had never met Dr. Grubb, but everything I’ve seen about him on the internet makes me believe he is the best and most compassionate POTS expert in the U.S. His name seems to appear as a co-author on about 90% of the journal articles I have found related to POTS. I hear he has a long waiting list, but it may be worth it if he can really help you. He’s written a number of helpful journal articles for POTS patients, which I will eventually link to on my “POTS Literature” page.

Dr. Svetlana Blitshyen offers a service in which she consults with you and your local doctor by telephone and can provide your doctor with a written report recommending a treatment plan for you. This may be good for patients who cannot travel for various reasons, or who simply want a second opinion.

Keeping with my ‘leave no stone unturned’ approach, when I was trying to identify the cause of my autonomic neuropathy, before Dr. Chemali figured it out, I also went to NYU’s Dysautonomia Center. I wold not recommend them for POTS or anything besides Familial Dysautonomia, a rare genetic disease seen in young children. They basically said, yes, you have POTS and “there is nothing we can do to for you people.” I was pretty shocked to be spoken to you like that, but that just goes to show that even the experts can be wrong sometimes. There are lots of things that can be done to help POTS patients, and if you can identify the underlying cause of your POTS symptoms, there is even more you can do to improve your situation.

My longtime family doctor has been my lifesaver throughout most of this. While she’s not a POTS expert, she’s more willing to try new things with me and help me find treatments that make me feel better, more than any other doctor I’ve met. She’s been on the phone with specialists and experts trying to get them to help me. She’s been fighting with the insurance company for me, to make sure they cover my hospital stays and my home IV therapy. She also has a wonderful bedside manner that you rarely find in today’s doctors. The nurses in the hospital thought she was my mom because she spent so much time talking with me. When we were kids, she’d drop off medicine at our house so my mom wouldn’t have to drag two sick little kids out in bad weather. She’s amazing.

Sometimes having a local doctor who is willing to work with you, and learn with you, and fight for you when necessary, is worth more than a top expert in a far away hospital who will only see you once or twice during your illness. So ask around town to see who the best local doctor is.

How to diagnose pots

How to diagnose pots

QUESTION:

What are some of the best natural remedies for POTS disease? Pharmaceuticals don’t help and I hate the side effects.

ANSWER:

Postural Orthostatic Tachycardia Syndrome or POTS is a condition where the autonomic nervous system (the part of the nervous system responsible for controlling automated bodily functions such as heartbeat, breathing, and digestion) doesn’t work properly. POTS sufferers may also have a heart muscle that’s smaller than a non sufferers. This debilitating condition causes the heart to beat rapidly when standing up, however, this can usually be relieved quite quickly by the person lying down. Symptoms of POTS include. dizziness, light headedness, fatigue, inability to stand for extended periods of time and fainting.

POTS sufferers do not live a normal life and must always be careful of what day-to-day activities they perform. Fortunately, there are some excellent natural remedies for POTS that have been proven to reverse this condition. Here are the top 2 you might like to consider.

Natural Cure for POTS Syndrome #1. Regular Exercise: Yes I know, at first glance this seems to go against what you have probably been told you must avoid if you suffer from POTS. However, new research has been able to prove that the RIGHT type of exercise done in the RIGHT way can significantly relieve the symptoms of POTS and even “cure” this condition.

The study, published in “Hypertension: Journal of the American Medical Association” took 19 POTS sufferers (18 females and 1 male) and had them begin a 30 to 45 minute exercise session, two to four times per week, before gradually working them up to five to six hours of exercise each week.

Because POTS syndrome can cause dizziness and fatigue when standing upright, researchers had to work out a way to help sufferers exercise safely.

“The unique component is to start training in a recumbent (semi-reclining) position, which is important to those who can’t tolerate standing. This strategy avoids the upright position that produces symptoms. We don’t even let patients stand up to exercise for one or even two months,” explained study organiser, Dr Benjamin Levine, who is also a professor of medicine and cardiology and distinguished professorship in exercise science at the University of Texas Southwestern Medical Center. The exercises performed all involved recumbent or sitting exercises such as cycling on a recumbent bike, swimming and rowing. “To maintain the benefits these patients will need to incorporate the training program into their everyday lives

indefinitely” Dr Levine went on to say.

What was interesting about the study is that “every single POTS patient who completed the exercise regime showed an improvement in heart rate responses and over half – 53 percent – were actually cured of their POTS.”

So if you suffer from POTS, simply follow the same exercise regimen as what was done in the study. You can read more about it here.

Natural Remedy for POTS Syndrome #2. Raise Your Blood Pressure: Another cause of POTS syndrome is low blood pressure caused by blood vessels not being constricted enough (which causes a lack of blood flow to the brain when standing up). Certain foods and beverages are great for raising blood pressure and shrinking blood vessels. These include.

Coffee and Tea; Have a strong cup of tea or coffee every day to help raise your blood pressure.

Ginger; Ginger is excellent for constricting blood vessels. Make yourself a nice hot cup of ginger tea every day and use it in your cooking as much as possible.

Raisins; Raisins are a traditional Ayurvedic remedy for low blood pressure. Eat at least a handful each day.

Licorice Root; This herb is terrific for normalising low blood pressure and curing fatigue. Take 400-500 mg’s of licorice root capsules every day for best results.

Salt; Salt is also extremely good for normalising blood pressure and shrinking blood vessels. The best (and healthiest) salt to use is Himalayan pink rock salt. This salt is not only high in sodium, it’s also high in the other essential trace minerals that help to constrict blood vessels and increase blood flow to the brain. Mix one-half teaspoon of pink rock salt in a glass of warm water and drink down. Be sure to also use Himalayan pink rock salt to salt your food to taste and add to your cooking.

Drink Lots of Water; Dehydration definitely worsens the symptoms of POTS syndrome. So it’s crucial that you keep yourself hydrated at all times. Aim to drink AT LEAST 2 liters of clean filtered water per day. And be sure to add a slice or two of fresh lemon to your water as well. Lemon juice is also extremely beneficial for POTS syndrome when caused by dehydration.

So hopefully these tips and home remedies help you out.

All the best to you!

Troy (Certified Holistic Nutritionist & Herbalist, Health & Wellness Coach)

Comments for 2 Powerful (And Natural) Ways to Reverse POTS Syndrome.

Hi Taylor. Firstly, you’re welcome. Hope the tips and remedies help you out. With climbing stairs, it’s a good idea to try and avoid them if you can while healing, to give your body a break. If you can’t then don’t stress about this too much – your body will still heal (it’s an amazingly resilient machine). If you can work out standing up then yes, certainly do this. The reason why researchers had study participants lie down to do their exercises is so that none passed out. Either way can be used and both are just as effective as each other.

Hope this helps.

This abstract goes into the study more Pam.

This exercise program is also proving to be highly effective for POTS sufferers.

There are many different tests that practitioners can use to assess if a patient has POTS.

Tilt Table Test

The tilt table test is used by autonomic physicians as the gold standard test for POTS. In this procedure, the patient will be put on a table that can be adjusted from the horizontal position to nearly vertical. The table has a footrest and two safety straps to prevent falling if dizziness or fainting should occur during the upright portion of the test. It is important to lay flat for some time before they start the actual testing. During this time, they will attach a blood pressure cuff, oxygen sensor, and EKG sensors. This allows the physician to monitor blood pressure, oxygen, heart rate, and electrical activity of the heart during testing.

Steps of the tilt table test:

Quantitative Sudomotor Autonomic Reflex Testing (QSART)

This test measures the response of the small nerve fibers innervating the sweat glands. QSART can be used to assess disorders of the autonomic nervous system and peripheral neuropathies. There is a reservoir of the neurotransmitter acetylcholine which is released onto the skin with mild electrical stimulation. The QSART then measures the amount of sweat present.

If there is a loss of sympathetic neurons, sweat will not be detected during this test. This might indicate sympathetic cholinergic failure from loss of sympathetic nerves. It is possible for someone who doesn’t sweat in hot and humid environments to sweat during the stimulation of the QSART test.

Steps of the QSART:

Thermoregulatory Sweat Test

This is a measure of your ability to sweat when stimulated by a warm and humid environment. It assesses the autonomic control of sweating and body temperature regulation. In this test, an orange powder is applied to the skin and then the patient is put into a hot and humid environment that would cause perspiration in healthy individuals. The powder will change from orange to purple if sweating occurs. The pattern of sweating can help diagnose a variety of neurological and autonomic disorders related to reduced or excessive sweating such as small fiber neuropathy, autonomic neuropathy, multiple system atrophy, and pure autonomic failure among others.

Stress Test

The stress test can use a treadmill or a bike to determine how exercise affects a person with postural orthostatic tachycardia syndrome. You will exercise until you reach the target heart rate, typically 10-12 minutes. During this test, they measure both your heart via EKG and respiratory system using a respirometer.

Hand Grip Test

This is exactly what it sounds like – you squeeze a hand grip dynamometer. First, they measure your maximum grip strength. Then you squeeze to maintain a percentage of your maximum, often 30%, for a set period of time or until your arm is fatigued. Those with autonomic dysfunction may show an increase in their diastolic blood pressure as the sympathetic nervous system is activated during the hand grip test.

Valsalva Maneuver

The Valsalva Maneuver requires you to blow into a tube to maintain 40 mmHg for 15 seconds while your heart rate and blood pressure are being recorded. This may show abnormal baroreflex results in those with moderate to severe POTS. There is conflicting evidence on the accuracy of this particular test.

Heart Monitoring at Home

Sinus tachycardia is common in people with POTS. Wearing a Holter monitor, endless-loop recorder, or event recorder allows physicians to monitor your heart over days or weeks. You may be asked to keep a written journal of symptoms, or to push a button on the device when you faint or feel otherwise symptomatic. This highlights symptomatic episodes for a reading by your doctor.

Catecholamine Test: Blood or 24 Hour Urine Sample

Some people with postural orthostatic tachycardia syndrome will have abnormal function of their sympathetic nervous system. The major neurotransmitter of this system is norepinephrine, a catecholamine. Therefore, the catecholamine test can assess levels of sympathetic activity in a variety of situations. It is common to use an IV for blood draws to prevent distress at the time of the reading, as this would skew the results. Blood will be drawn after the patient has been horizontal for 20-30 minutes, and then again after being tilted to a standing position. In the case of the urine sample, it is an indicator of general levels of catecholamines, and does not give specific information about levels when standing versus sitting.

24 Hour Urinary Sodium Test

This can help to determine if your plasma volume is normal. Many with POTS struggle with low blood volume, and are treated with salt and excess hydration to restore normal blood volumes. Low sodium in the urine means that the body is retaining salt and water to try to increase blood volume.