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POSTURAL ORTHOSTATIC TACHYCARDIA SYNDROME (POTS)

What is POTS?

POTS, which stands for Postural Orthostatic Tachycardia Syndrome, can start to be explained by taking the term apart.

  • Postural: Relating to position of the body
  • Orthostatic: Caused by an upright posture
  • Tachycardia: Fast heart rate over 100bpm
  • Syndrome: Signs or symptoms that occur together because of a certain condition

POTS is a form of dysautonomia, which is a disorder of the autonomic nervous system. The autonomic nervous system controls all of the automatic functions in the body (heart rate regulation, blood pressure regulation, digestion, etc.). Because this disorder involves the autonomic nervous system, POTS can cause a wide range of symptoms. Symptoms may include, but aren’t limited to: dizziness, lightheadedness, palpitations, heart racing, nausea, difficulty concentrating, excessive fatigue, presyncope, and occasionally syncope.

POTS affects an estimated 1-3 million Americans, with 80-85% of those being female, and most between the ages of 15 and 50.

How is POTS Diagnosed?

  • POTS is diagnosed with a tilt table test. The test looks at your baseline heart rate when you are lying down in comparison to your heart rate when tilted at 70 degrees. If your tilt table test is positive for POTS, your heart rate will either show an increase of at least 30 beats per minute above baseline in the first 10 minutes (40 beats per minute for children/adolescents) or increase to at least 120 beats per minute in the first 10 minutes.

What Causes POTS?

  • Some of the known associated conditions are autoimmune diseases, Ehlers Danlos syndrome, mast cell activation disorders, paraneoplastic syndrome, trauma such as a concussion or surgery, Lyme disease, and viral infections.
  • Research is still evolving on the different causes of POTS and oftentimes the cause is unknown.

Other Than Medication, What Will Help with My POTS Symptoms?

Fluids

  • Increase fluid intake to 2–3 liters (60–100 ounces) per day.
  • A good rule of thumb is to take in at least as many ounces as your weight in kilograms. (Your weight in kilograms is roughly half of your weight in pounds). Example: If you weigh 150lbs, you should take in at least 75oz of fluid per day.
  • You should take in more fluid if you are physically active.
  • You may find it easier to take in more fluid if you drink out of a straw rather than straight out of a bottle or cup.
  • Caffeine is ok in moderation. Limit intake to 16 ounces per day. For every ounce of caffeine that you drink, you should drink at least that many ounces in water as well.
  • Avoid alcohol because it can cause a drop in blood pressure. If you are going to drink, limit yourself to 1–2 drinks and make sure you are adequately hydrated before and after. Again, for every ounce of alcohol you drink, you should drink at least that many ounces in water as well.
  • If you are symptomatic upon waking, drink 16 ounces of water before getting out of bed.

Exercise

  • Exercise is an extremely important part of maintaining functionality.
  • Depending on your current level of activity, beginning an exercise program can be a slow process. It is best to start with exercises that can be done from a seated/reclined position such as stretching, yoga, gentle weight lifting, recumbent biking, rowing, etc. Many also find success with hydrotherapy or water walking due to the decreased gravity in the pool. Once you have built up a tolerance to these seated and/or water exercises, you can then begin to attempt upright exercises on land.
  • If you would like additional information on an organized exercise program tailored specifically to POTS patients that you can try on your own, you can visit dysautonomiainternational.org. Under exercise tips in the patient section, there is a “CHOP Modified Dallas Protocol” that you can review.

Sodium

Increase sodium intake to 5–7 grams of sodium per day.

  • 1 tsp of salt = 2.3 grams (2300mg) of sodium.
  • There are numerous products available that can assist with sodium consumption. A few of them are Drip Drop, Liquid IV, Normalyte, Nuun, and SaltStick. These products can be purchased from e-commerce companies like Amazon or directly from their websites. Liquid IV and Nuun also have a store locator function on their websites to help find in-store purchasing locations.
  • Note on Liquid IV: You can use code DYS30 when purchasing from liquid-IV.com to get a 30% discount.
  • Note on SaltStick: You can sign up to become a member at vitassium.com to get a 20% discount

Sleep

  • Good sleep hygiene is an important part of combating the fatigue that typically accompanies POTS.
  • If you struggle with difficulty falling asleep or staying asleep, a referral to our sleep specialist at the Aurora Medical Center in Grafton may be of benefit and can be placed at your request.

What Can I Do to Avoid Syncope (passing out)?

  • Be proactive with the treatment of fluids, sodium, and exercise as noted above.
  • Elevate the head of your bed by purchasing bed risers or by securely placing 4–6 inch blocks underneath the headboard.
  • Do counter-maneuvers when you are standing. Counter-maneuvers consist of crossing your legs, stooping, squatting a little and tensing your leg muscles, marching in place, etc.
  • If you are having significant symptoms, sit down and drink at least 16 ounces of water in a matter of a few minutes. If symptoms persist, lay down and elevate your feet above heart level.

What Things Should I Avoid?

  • Dehydration —Fluids, as noted above, are extremely important in the management of POTS. Symptoms tend to be worse when dehydrated.
  • A sedentary lifestyle —It’s important to not lay down for prolonged periods during the day. Exercise is important in maintaining functionality.
  • Quick position changes —It’s important to get up slowly from lying and seated positions. Make sure to assess how you’re feeling before stepping away from the bed/chair.
  • Getting overheated —Saunas, whirlpools, and other hot environments should be avoided. If you need to be out in hot weather, consider purchasing a cooling vest. Alternative options to a cooling vest are Mission Enduracool or Mission Multi-cool cooling towels or headbands. These can all be found on Amazon.
  • Large, heavy meals —Eating small, frequent meals that are low in carbohydrates is best.
  • Driving —If you sustain a syncopal episode, state laws may prohibit you from driving for a short period.

What are Some Good Additional Resources for Me?

Dysautonomiainternational.org is a great website for information. If you are on Facebook, there are numerous groups and pages you can join/follow. Some of these are:

  • Dysautonomia International
  • POTS
  • POTSibilities Parents
  • Teens with Dysautonomia

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