There are many ways to manage POTS symptoms, but there is not a one-size approach that works for all patients. Be patient as people with POTS try different lifestyle modifications, and willing to switch recommendations if something isn't working. For some with POTS, slow, graded exercise can drastically improve symptoms, but for those with POTS and ME/CFS, exercise can further drain that person's energy store. Here are some common lifestyle changes that might benefit your POTS patients.
Increase Blood Volume and Flow
Increase fluid and sodium/salt intake. The 2021 POTS Expert Consensus Review (Vernino et al., 2021) endorses patients consuming at least 2-3 Liters of water per day along with 3-10 grams of sodium from ordinary table salt, salt tablets or electrolyte solutions. Other expert guidelines recommend up to 10-12g salt/day (Kichloo et al., 2021). One teaspoon salt contains about 2300mg sodium. Salt tabs work great for some patients but can cause stomachaches for others, as they pull water into the stomach. Drinking plain water is adequate for many patients, and others feel better getting up to half their fluids from drinks with natural or added electrolytes. Drinking the first 2 cups of fluids before getting out of bed helps some patients.
Compression hose, abdominal binders and/or gloves with at least 20-30 mm Hg of pressure to help maintain blood flow back to the heart. Recent research suggests that compression garments for the thigh, buttocks, and abdomen give the best therapeutic effect.
Tighten and relax leg muscles before standing. Pumping the ankles or tightening the muscles in the legs about 10 times before standing can help to constrict blood vessels and reduce symptoms upon standing.
Avoid prolonged standing - sit when possible. A stool in the bathroom can save energy when brushing teeth, washing the face, drying hair and putting on makeup. When showering, put your clothes on the stool so that you don't have to bend over to pick them up. Every ounce of energy saved can be used for another purpose during the day.
Consider a shower chair. Many people with POTS get dizzy in the shower. Standing still in a warm environment for several minutes may cause some people to faint. Use of a shower chair can minimize the risk of dizziness and fainting in the shower, and hopefully prevent an injury.
Avoid bending over. Bending can alter blood flow and cause dizziness or fainting upon returning to an upright position. Instead, bend at the knees, keeping the head above the waist.
Avoid high temperatures and high humidity. People with POTS often don't regulate body temperature very well. When hot the blood vessels dilate, which promotes blood pooling. Staying cool in the summer months is an important strategy. Cooling vests, spritzing water on the face, or staying the air conditioning when it's hot outside is recommended.
Elevate the head of the bed. Blocks of wood or bricks under the legs at the head of the bed that raise it by four to twelve inches can help fluid retention while sleeping.
Decreasing Abdominal Pain or Nausea
Try smaller, more frequent meals. It is common for large meals to exacerbate POTS because digestion sends more blood to the GI organs and away from the brain and heart (Mehr et al, 2021). For patients with gastroparesis, eating smaller, more frequent meals that are lower in fat and fiber (which can further slow digestion) may help, but has not been formally studied (Tu et al., 2020). Liquid or pureed meals may also help.
Reduce intake of high-glycemic and high-carbohydrate foods, such as sweets, baked goods, pretzels, chips, bread, potatoes and pasta. High-carbohydrate foods are found to exacerbate POTS symptoms, and send more blood to the GI organs, meaning there is less blood in circulation to the head and heart (Mehr et al., 2018). These foods can be replaced with foods higher in protein, healthy fats and fiber. This strategy may also help because POTS patients may be at increased risk of glucose intolerance, which increases risk to develop type 2 diabetes (Breier et al., 2022).
For patients with dumping syndrome, meals that are higher in fat and fiber may help slow transit, and complex carbohydrates are recommended over sweets or processed carbs. In addition, a pectin supplement to increase viscosity of diet can be considered. Delaying any drinking of water for 30 minutes after meals may also help. It should be noted, however, that these recommendations come from patients with dumping syndrome who did not also have POTS (Tu et al., 2020).
Try natural remedies for nausea. Ginger is a great natural remedy - ginger ale, tea, in cookies or raw. Peppermint tea, candy or oil is another great way to decrease nausea. Peppermint or lavender scents in the home can also be effective. You could also try lemon wedges, both the scent and the taste can decrease feelings of nausea or buy Emetrol.
CHOP Modified Exercise Program for POTS
Originally developed by Dr. Levine, this modified exercise protocol from the Children's Hospital of Philadelphia is a widely used guideline for people with POTS to work to increase their stamina very slowly over time.
Build up the number of minutes spent exercising very slowly. Many with POTS have exercise intolerance and orthostatic intolerance (symptoms increase when standing). Start them with five minutes of recumbent exercise per day and then add one minute to the exercise regimen per week. Eventually, try to have your patient build up to 30 minutes per day for at least three days per week. Moving too quickly in progressing with the on the exercise regimen can backfire.
Recumbent aerobic exercises are recommended: swimming, recumbent stationary bike or rowing machines allow increased heart rate and circulation while minimizing the effect of gravity on the body Note: For patients who also have Ehlers-Danlos Syndrome, the pulling motion of the rowing machine may lead to subluxations or dislocations.
Spend time in the swimming pool. Moving is the water is a great way to get some exercise without triggering symptoms. The cool water of the pool can numb pain, and blood vessels are compressed by the pressure of the water. Many people with POTS feel better in the water for these reasons.
Mix strength training with aerobic exercise. Two days per week should be devoted to strength training of the legs and core, if possible. Focus on exercises that can be done in a chair or on the floor, like a seated leg press, leg curl, leg extension, calf raise, chest press, and seated row (see the CHOP modified exercise program). Exercises for the core might include abdominal crunches, back extensions, and side planks.
Exercise to tackle insomnia. If sleep is an issue, exercising in the late afternoon or early evening is the best time to combat insomnia.
Identifying Food Sensitivities
Try to identify any food allergies/intolerances that may be causing symptoms. The most common allergens are wheat, cow’s milk, eggs, peanuts, soy, sesame, tree nuts, fish and shellfish, but individuals can be allergic/intolerant to any food (AAAAI.org). Working with an allergist or dietician may be advised if you suspect significant allergies or intolerance. Elimination diets can be useful tools for identifying offending foods, but should be done under the supervision of a healthcare professional who can make sure you get adequate nutrition.
Consider 1-month gluten-free trial, to see if it helps. Eating whole foods (meat, dairy, fruits and vegetables) that have not been processed are best during this month. POTS patients were found to have higher prevalence of Celiac Disease (4% vs 1% background rate) and gluten intolerance (42% vs 19% background rate; Penny et al, 2016). In a survey of 20 POTS patients who had, on their own, decided to be gluten-free for >4 weeks, the self-reported reduction in POTS symptoms was 45% (Zha et al., 2022).
If your patient has co-morbid MCAS, you might consider having your patient try a low-histamine diet.
If your patient has co-morbid autoimmune disease, you might consider a trial of an autoimmune protocol diet.
Nutritionist and SUTP Board member Jill Brook created a page called What the Bleep Can I Eat? to help patients navigate which foods can be consumed on a variety of diet options.