Managing Symptoms of Postural Orthostatic Tachycardia Syndrome
Unfortunately, there is not a one size fits all formula for managing the symptoms of postural orthostatic tachycardia syndrome (POTS). Just as each individual has a different combination of symptoms, each person has a unique response to treatment options. Some people respond very well to daily recumbent exercise, while for others dietary changes are more important. Talk with your doctor before making changes to your treatment regimen.
Increasing blood volume to prevent dizziness, lightheadedness, and/or fainting.
Increase the salt intake. My daughter swallows 6 grams of salt per day in pill form in addition to eating salty snacks and over-salting food. While most Americans are trying to decrease their salt intake, people with POTS really need salt in high quantities. Salt helps them retain water in their blood vessels which in turn elevates blood pressures to normal levels (or prevents it from falling when they stand). Some aim to have daily salt intakes up to 10 grams (10,000 mg) to control their symptoms. Some people with POTS prefer Himalayan pink salt capsules or salt sticks instead of normal sodium chloride tablets. Naturally salty foods to try include cold cuts, cured meat, and store bought soups. If you are taking Florinef, Thermotabs are a great way to get both salt and potassium.
Drink, drink, drink. Individuals with POTS should be drinking AT LEAST 2-4 LITERS of water, milk, pedialyte, Gatorade, Propel etc. per day. Some parents recommend drinking 3 liters pedialyte every day instead of water. When consuming that much salt, you MUST have fluids to accompany them to prevent dehydration. When I don’t know what else to do to help my daughter, I get her a nice tall glass of water with ice! Here are some recipes to make your own sports drinks at home.
General Strategies to Manage POTS
Eat four to six small meals. Many people with POTS have changes in their stomach motility which cause them to empty the stomach either too fast or too slow. Eating smaller meals throughout the day can help to alleviate the abdominal pain that might follow a larger meal and increase efficiency of nutrient absorption. Another idea is to chop the food in a food processor or blender to make digestion easier.
Change your diet. If stomach pain often occurs after eating, you might try eliminating gluten, dairy, and/or eggs from your diet. We went on a strict Elimination Diet to see if it would help my daughter. Many people have sensitivities to foods they consume daily without realizing it. A low histamine diet might be helpful if you suspect mast cell activation disorder.
Try natural remedies for nausea. Ginger is a great natural remedy - try it as 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 calm nausea. You could also try lemon wedges, both the scent and the taste can decrease feelings of nausea or buy Emetrol.
Tighten and relax leg muscles before standing. Pumping your ankles or tightening the muscles in your legs about 10 times before you stand can help to constrict your blood vessels and reduce symptoms when you stand.
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 your head above your waist. It's better for your back, and your POTS!
Try compression hose and/or gloves with 20-30 mm Hg of pressure on the legs. Ask your doctor for a prescription for these hose as they can be quite expensive. There are some really cute compression hose with fun colors and designs. If there is neuropathic pain in the legs, the compression hose may not be well tolerated.
Elevate the head of the bed. Take blocks of wood or bricks and put them under the head of the bed to raise it up by four to twelve inches.
Drink a bottle of water in 1-2 minutes before getting out of bed. Drinking while pumping your leg muscles can make it easier to get out of bed without fainting.
Exercise. As much as you may not feel like working out, research has shown the exercise can improve POTS symptoms better than beta blockers. Start slowly and add a minute or two every couple of days until you build up to 30 minutes of exercise five days a week. Recumbent exercise like swimming, rowing, or recumbent bikes are recommended as well as weight training and Pilates. Avoid upright exercise in the early stages of your exercise. High impact exercise can also trigger symptom flares. Click here for more information on exercise.
Spend time in the swimming pool. Moving is the water is a great way to get some exercise without triggering your symptoms. The cool water of the pool can numb your pain. As an added benefit, blood vessels are compressed by the pressure of the water on your body. My daughter comes alive in the pool in a way that we rarely see outside of the pool!
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.
Sit when possible. Buying a small bar stool to put in the bathroom can save your energy when brushing teeth, washing your face, drying your 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.
Ice the pain. We keep several rice bags in the freezer at all times, and have found that they relieve pain better than taking ibuprofen or naproxen for headache or abdominal pain. In our case, the ice pack usually relieves the pain within 5-10 minutes. We also use ice packs on my daughter's legs when the pain becomes intolerable.
Epsom salt bath. Putting 2 cups of Epsom salt in the tub before a bath three times a week can help relax the nervous system, decrease anxiety, sooth back pain and aching limbs, ease muscle strain and drawing toxins from the body. The magnesium and sulfate in the bath can pass through the skin and can be a good natural remedy.
Myofascial trigger release. 20-30 massaging strokes in sore areas several times throughout the day can bring some relief. Use your thumb, fist, elbow, tennis ball or whatever feels good to you to press or rub the area for about 30 seconds. Click here for more information on self massage.
Try a 10,000 lumen light to reset the sleep/wake cycle. For many with chronic illness, insomnia can be a problem. This might be from lack of exercise during the day, napping, pain, sympathetic surges, or a variety of other causes. My daughter sleeps better at night when she uses her light for 30 minutes first thing in the morning. This is the same light often used for people with seasonal affective disorder. Some say that it decreases fatigue and brain fog, but that has not been the case for us. Still, sleeping more reliably at night is wonderful!
Pursed lip breathing. When shortness of breath occurs, try relaxing your neck and shoulders. Breathe in through your nose for two seconds while your mouth is closed. Count inhale, one, two. Purse your lips (like you will whistle) and breath out slowly and gently for four seconds. Count exhale, one, two, three, four. Practice this technique four to five times per day to improve your breathing over time.
Be creative! Managing POTS is about finding a series of little tricks that work for you. Different techniques work for different people. Having trouble working at your computer? Try making a desktop on your recumbent bike and pedal slowly while you work to prevent blood pooling. Some with POTS use a massage table and lay face down as they work on their computer below them! There are many solutions, and the trick is finding what might work best for you. Good luck!