POTS can be debilitating and frustrating--especially because few providers specialize in POTS. At Hearthside, our functional medicine program is best for POTS patients.
What does POTS stand for?
Postural: related to the position of your body
Orthostatic: related to standing upright
Tachycardia: increased heart rate
Syndrome: a group of symptoms
There are different forms of POTS:
Neuropathic POTS is a term used to describe POTS associated with damage to the small fiber nerves (small-fiber neuropathy). These nerves regulate the constriction of the blood vessels in the limbs and abdomen.
Hyperadrenergic POTS is a term used to describe POTS associated with elevated levels of the stress hormone norepinephrine.
Hypovolemic POTS is a term used to describe POTS associated with abnormally low levels of blood (hypovolemia).
Secondary POTS means that POTS is associated with another condition known to potentially cause autonomic neuropathy, such as diabetes, Lyme disease, or autoimmune disorders such as lupus or Sjögren’s syndrome.
Normally, your body’s autonomic nervous system balances your heart rate and blood pressure to keep your blood flowing at a healthy pace, no matter what position your body is in. If you have POTS, your body can’t coordinate the balancing act of blood vessel constriction (squeezing) and heart rate response. This means that your body can’t keep your blood pressure steady and stable. This causes a variety of symptoms.
Each case of POTS is different. People with POTS may see symptoms come and go over a period of years. In most cases, with adjustments in diet, medications and physical activity, a person with POTS will experience an improvement in their quality of life.
You’re at a higher risk of developing POTS after experiencing the following stressors:
Significant illnesses, such as viral illnesses like mononucleosis, covid, or serious infections.
Physical trauma, such as a head injury.
People who have certain autoimmune conditions, such as Sjogren’s syndrome, lupus and celiac disease, are also more likely to develop POTS.
There’s also growing evidence suggesting that POTS might be an autoimmune disease, meaning your immune system attacks healthy tissue for unknown reasons.
POTS is less common in young children, but it affects adolescents and adults, and symptoms often develop during puberty. POTS may begin after an apparent or confirmed viral illness, but it can also appear following surgery and other health events.
POTS can run in families, but no single gene associated with the majority of cases of POTS has been identified. A mutation in the norepinephrine transporter gene appears to affect only a tiny portion of POTS patients. Among genetic factors, there is a strong association between POTS and various joint hypermobility disorders, including Ehlers-Danlos syndrome. Recent research has also highlighted an overlap between POTS, joint hypermobility and mast cell disorders, some of which have a genetic origin.
The vast majority of adolescents and young adults with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have POTS or related forms of orthostatic intolerance. The intensity of the fatigue, exercise intolerance and other symptoms are greater in those with ME/CFS and POTS than in those with POTS alone.
Another condition similar to POTS is sinus tachycardia, in which the resting heart rate is usually above 100 beats per minute. Fibromyalgia patients, those with gut health issues (such as irritable bowel syndrome), excessive sweating (hyperhidrosis) and many other conditions can also develop POTS.
POTS has several possible symptoms, and they vary from person to person. Symptoms include:
Dizziness or lightheadedness, especially when standing up, during prolonged standing in one position or on long walks.
Fainting or near fainting.
Forgetfulness and trouble focusing (brain fog).
Heart palpitations or racing heart rate.
Feeling nervous or anxious.
Shakiness and excessive sweating.
Shortness of breath (dyspnea).
A pale face and purple discoloration of your hands and feet if they’re lower than the level of your heart.
Disrupted sleep from chest pain, racing heart rate and excessive sweating during sleep.
POTS symptoms often get worse in the following situations:
Being in warm environments, such as in a hot bath or shower or on a hot day.
Standing frequently, such as when you’re waiting in line or shopping.
Participating in strenuous exercise.
When you’re sick, such as from a cold or an infection.
Having your period (menstruation)
How we test for POTS:
Diagnosis is often done by ordering a tilt table test, lab work, ruling out other conditions that may mimic POTS. Diagnosis can be made by your primary care provider but sometimes we may consult with neurology, cardiology or nephrology.
Treatments for POTS:
1. Increase water
The foundation of treating POTS is to drink fluids frequently throughout the day. For most POTS patients, the goal is at least 64-80 ounces (about 2-2.5 liters) a day. You would also need to increase your intake of salty foods and add more salt to your diet with a saltshaker or salt tablets.
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.
2. Increase Salt
There is typically a recommendation to increase salt intake in POTS syndrome, even to increase sodium intake to 5-10g/day for very symptomatic patients. Others would generally advise that salt intake is increased by 2-4g/day.
Most experts would recommend that there be some effort to increase dietary salt in POTS patients by around 2-4g/day. Particularly symptomatic patients may benefit from as much as 6-8g sodium/day. Initial efforts should be made through dietary salt, and if necessary salt tablet may be used if part of a treatment plan.
Increase the salt intake. 6-10 grams of salt in pill form (SaltSticks, Thermotabs, other types) is often required in addition eating salty snacks and over-salting food. Salt helps POTS patients retain water in their blood vessels which elevates blood pressure to normal levels (or prevents it from falling when they stand). 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.
3. Change your diet: POTS patients are generally advised to eat smaller meals more often rather than larger meals, and also to limit the carbohydrate in their diet.
4. Avoid energy drinks: Energy drinks such as Red Bull have been implicated in development of POTS in young people. In one published report, avoidance of the energy drink resulted in complete treatment of the POTS syndrome
5. Consider testing for food intolerances or avoiding gluten and dairy--best done with a functional medicine provider such as at Hearthside
6.Practice isometric exercises: These exercises involve contracting your muscles without actually moving your body. Isometrics squeeze your muscle and push your blood back toward your heart. They’re simple to do, and you can do them lying in bed or seated. It’s a good idea to do these in bed before getting up to prepare your body for sitting and standing.
7. Transition slowly with your body: Go from lying to sitting on the edge of your bed. Stay there for several minutes, allowing your body to naturally adjust to the change in position. Once you’re standing, pause and wait before walking to allow your blood pressure to adjust again. If you feel lightheaded at any point, wait for a few minutes in that position to see if it resolves. If not, then return to the prior position. Moving slowly is the key.
Begin a modest walking or exercise program: Count how many steps you can do without causing symptoms. These steps are your initial baseline. Start with walking once a day and go a little farther in time, distance or by adding steps. If you feel good, add a second walk in the day. A simple strategy for counting steps is to do 100 to 300 steps per hour during the day. Fitness trackers can monitor steps easily. Every week or every few weeks, add more steps to your daily total. Practice simple yoga: Practicing basic yoga with a focus on breathing may help reduce POTS symptoms.
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 (drink electrolyte water frequently during exercise)
An electrolyte mix we like:
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!
9. Get quality sleep--poor sleep can cause POTS flares and also, POTS can disrupt your sleep. As sleep is very important for overall health, you should prioritize it. These general guidelines may help you:
Raise the head of your bed six to 10 inches to help alleviate POTS symptoms. The entire bed must be at an angle. Raising the head of the bed will increase fluid volume in your circulation in the morning. This may help you wake up more easily.
Try to maintain a typical sleep schedule. Go to bed consistently at a certain time and set a consistent time to wake up. The best sleep hygiene and good rest come from staying consistent with your sleep schedule every day.
Avoid excessive daytime napping. It may make nighttime sleep less restful.
Avoid excessive television viewing or using your phone or computer in bed.
10. Maintain a consistent temperature: It’s important for people with POTS to maintain an even temperature, as extremes, especially heat, can make symptoms worse. Air conditioning, cooling vests, handheld misters, personal fans and wearing layers in case of temperature fluctuations can all help. When showering, try to use lukewarm water, as either hot or cold can trigger POTS symptoms. Using a shower chair can also be helpful
11. Avoid alcohol --alcohol almost always aggravates POTS. It diverts blood away from the central circulation to the skin and increases loss of fluids through urine.
12. Consider physical therapy with someone trained in POTS: Physical therapy can make a difference for some people with POTS. Because sometimes POTS symptoms can worsen with exercise, physical therapy has to start slowly and advance based on your tolerance rather than a rigid plan.
13. Wearing compression garments may help some people reduce excessive blood pooling in the legs. Try compression socks and/or gloves with 20-30 mm Hg of pressure
14. Body posture:
Certain postures while sitting or sleeping may also help reduce POTS symptoms. Some people have developed habits such as standing with legs crossed or sitting in a low chair to compensate for POTS
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.
Sit when possible. A small bar stool 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.
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!
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.
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 prolonged standing: Standing for a long time makes symptoms worse for most people with POTS. If you must stand for a long time, try flexing and squeezing your feet and muscles or shifting your weight from one foot to the other.
Magnesium: I suggest taking supplemental magnesium, which may help slow the rapid heartbeats characteristic of POTS. Start with 125 mg of magnesium twice daily and move up slowly to 250 mg twice daily, advancing every couple of weeks to get to 500 mg twice daily if you don’t get symptom relief with lesser doses. Look for magnesium citrate, chelate, or glycinate. Avoid magnesium oxide, which can be irritating. Add calcium (500 mg twice daily) if the magnesium causes loose stools.
Licorice Root This herbal supplement is used short-term for adrenal support and can sometimes be used as an alternative to Florinef, a steroid often prescribed in the treatment of adrenal dysfunction and POTS. This is contraindicated in those with high blood pressure.
CoQ10 This is a fat-soluble vitamin-like substance that is also a powerful antioxidant. It is known to have powerful cardio-protective benefits.
Adrenotone is a supplement with multiple nutrients found to help regulate the nervous system and HPA axis and a healthy blood pressure level for those struggling with low blood pressure. This is contraindicated in those with high blood pressure
L-carnitine. This amino acid is critical for energy production in every cell in the body. It carries fat, in the form of fatty acids to the mitochondrial inner membrane where energy is produced through a process called Kreb’s cycle. Without L-carnitine, the normal burning of fat cannot take place and energy production is impaired.
PS: Use care with supplements. Some supplements, herbs and homeopathic remedies amplify POTS symptoms. We recommend introducing new supplements every 3 days (not all at once) so it’s obvious which supplement is the culprit. Some patients have seen an exacerbation of symptoms happen with certain supplements, including GABA, hemp CBD oil and melatonin, but this varies by patient.
PSS: ALWAYS get your medical provider's blessing on these--This does NOT constitute medical advice and are general suggestions only.
16. You also might benefit from taking a course in biofeedback, to learn to access the autonomic nervous system and gain some influence over its function.
17. Stress Reduction
Stress exacerbates ANS imbalances. Therefore, daily relaxation techniques such as breathing, meditation, gentle stretching, and mindfulness practices can help.
18. Root cause approach: consider testing for a root cause of POTS using functional medicine testing:
A functional medicine approach should rule out other conditions that could explain or mimic them, such as adrenal or thyroid disorders, anemia, dehydration, and nutrient or electrolyte imbalances. POTS frequently is associated with Ehlers Danlos and sometimes with Mast Cell Activation Syndrome, so find a provider who is knowledgeable about these as well.
POTS can also occur due to deficiencies or imbalances of certain vitamins, including vitamins E, B1 (thiamine), B3 (niacin), B6 (pyridoxine), and B12 which are essential to healthy nerve function.
A functional approach will Check for underlying infectious or autoimmune triggers, food triggers, mast cell syndrome, EDS, contributing nutrient deficiencies etc. This may include a full autoimmune panel, thyroid panel, aldosterone, sex hormones, adrenal panel, gut intolerance/inflammation panel, full nutrient panel and organic acid testing.
19. Stomach/digestion issues:
Eat four to six small meals. Many people with POTS have changes in their stomach motility which cause the stomach to empty either too fast or too slow. Eating smaller meals throughout the day can help to alleviate the abdominal pain and increase efficiency of nutrient absorption. Pureeing food in a food processor or blender can 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. 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 - 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
More on Salt:
– Keep salty snacks on hand, such as pickles, olives, salted nuts, tomato soup, tomato juice, etc. if tolerated
– Don’t rely on the unhealthy salty snacks like chips and crackers
These are some links to guides of sodium content of different foods. Usually this is used to avoid the high sodium food. But in this case you can simply look for the high sodium foods and see which ones you like!
This is a link to a useful resource for a diet higher in sodium: http://www.potsrecovery.com/p/lotsa-salt-diet.html
General guidelines for dietary changes include:
Increase sodium in your diet from 3,000 milligrams (mg) to 10,000 mg per day.
Drink 2 to 2.5 liters per day of fluids. Water is the best choice.
Eat small and frequent meals instead of a few large meals.
Eating a diet with high fiber and complex carbohydrates may help reduce blood glucose (sugar) spikes and lessen POTS symptoms.
Keep your nutrition balanced with protein, vegetables, dairy and fruits.
Choose beneficial salty snacks such as broth, pickles, olives, sardines, anchovies and nuts. Don’t over-rely on snack chips and crackers for salt.
Plan grocery store shopping using a list to make sure you pick up healthy food choices and POTS care (hydration and salty supplements). If you have low stamina, have someone help you shop and carry and put away your groceries
We, like most medical providers, sometimes prescribe medications off-label to help certain POTS symptoms as there are no medications made specifically for POTS as of yet. Some POTS patients need to be under the care of nephrology, cardiology, or neurology.
These prescription medications may include:
Fludrocortisone (increases salt retention and blood volume, decreases the amount of sodium lost in your pee)
Pyridostigmine (may reduce tachycardia).
Midodrine (causes widespread vasoconstriction which narrows the blood vessels).
Beta-blockers or ivabradine (may reduce upright tachycardia).
Selective serotonin reuptake inhibitor (SSRIs) – a type of antidepressant that can affect how your nervous system works
Clonidine-helps to regulate blood pressure, heart rate, and pain signals--used in patients with the central hyperadrenergic form of POTS (with high blood pressure).
Desmopressin-- version of a natural antidiuretic hormone that increases free-water reabsorption without sodium retention. Significantly reduces upright heart rate in patients with POTS and improves symptom burden
Erythropoietin- may help improve symptoms of orthostatic intolerance
**All of these medications have potential side effects.
**There's no single medicine used for treating POTS
**None of the following medications has proven curable.
Want to be seen? Our primary care practice is accepting new patients. Havilah Brodhead, FNP practices functional medicine for a root cause approach and whole-person approach to POTS. She is accepting new patients, seen in our Oregon clinic Hearthside Medicine Family Care located in Bend, Oregon. She is licensed to diagnose, prescribe, and treat patients in Washington and Oregon and can provide health coaching for generalized POTS support for those not residing in these states who desire more education and lifestyle support for their symptoms.