Feeling Faint?

Fainting is a common and frequent side effect of POTS. To prevent an episode, lie down quickly and put your legs up. If you can't lie down, cross your legs, make a fist, bend forward and place your foot on a chair, or contract your abdominal or buttocks muscles. Each of these counter maneuvers may increase arterial pressure enough to maintain adequate blood flow to the brain and keep you on your feet.

POTS: 5 Fast Facts

1. POTS is not rare. It affects up to three million Americans, mostly women.
2. POTS is associated with autoimmune disease. Symptoms may appear secondary to an autoimmune condition such as Sjogren’s syndrome, lupus, celiac disease, and multiple sclerosis, or it may be an autoimmune condition in itself.
3. POTS is a syndrome, not a disease. As such, it may cause symptoms throughout the body, including tachycardia, palpitations, chest pains, lightheadedness, fainting, nausea, fatigue, and blood pooling in the extremities. The severity of these symptoms varies. About 25 percent of POTS patients are so disabled they cannot work or attend school, and the quality of life for POTS patients has been compared to that of chronic obstructive pulmonary disease and congestive heart failure.
4. POTS is often misdiagnosed. The average time to diagnosis is five years and 11 months. Up to 80 percent of patients are diagnosed with a psychiatric illness, but research shows that people with POTS are no more likely to have psychiatric disorders than people without the condition.
5. Few people “outgrow” POTS. A 10-year retrospective study of pediatric POTS patients found that 60 percent had improved symptoms but still had POTS, 20 percent had recovered, and 20 percent had worsened or stayed the same since their diagnosis.

7 Possible Pharma Fixes

Non-pharmacological therapies are critical to managing POTS. Knowledgeable doctors may also prescribe medications to control symptoms, even though the US Food and Drug Administration has not approved any treatments for the condition. That’s partly because clinicians do not agree on what causes POTS or what symptoms are part of it, says David S. Goldstein, MD, PhD, founder and director of the clinical neurocardiology section in the division of intramural research of the National Institute of Neurological Disorders and Stroke (NINDS) at the National Institutes of Health. “Further research is necessary to find out the mechanisms behind POTS,” he says.

The drugs listed here have adverse side effects that can limit their use in patients with POTS, Mayo researchers caution. And they may not work if you don’t add extra salt to your system.

The drug: Fludrocortisone.

The effect: Expands blood volume.

The drawback: May exacerbate headaches and vertigo, especially among patients with migraine.

The drug: Beta-blockers.

The effect: Slow rapid heart rate.

The drawback: May exacerbate fatigue and exercise intolerance and may produce hypotension in patients with low intravascular volume.

The drug: Midodrine.

The effect: Constricts blood vessels and helps coax blood flow back to the heart.

The drawback: May increase urinary retention among patients with bladder disorders.

The drug: Antidepressants, such as selective serotonin reuptake inhibitors (SSRIs) and serotonin-norepinephrine reuptake inhibitors (SNRIs).

The effect: Re-regulate the autonomic nervous system and increase blood pressure.

The drawback: SNRIs may cause worsening of tachycardia and “brain fog” symptoms in some POTS patients.

The drug: Stimulants, such as methylphenidate and amphetamine/dextroamphetamine. 

The effect: Reduce fatigue, constrict blood vessels, and increase blood pressure.

The drawback: May increase tachycardia and cardiovascular risks.

The drug: Pyridostigmine.

The effect: Helps reduce muscle weakness by inhibiting the breakdown of acetylcholine, a chemical that allows nerves to communicate with muscles.

The drawback: May exacerbate gastrointestinal symptoms such as nausea, vomiting, abdominal cramps, and diarrhea.

The drug: Octreotide.

The effect: Constricts blood vessels.

The drawback: May worsen headaches or cause blood sugar and thyroid abnormalities. 

Pass the Salt

If your doctor recommends increasing your salt intake, consult this handy salt-to-sodium conversion table, courtesy of Dysautonomia International. This is an approximation, because each type of salt has a slightly different sodium concentration, but one teaspoon of salt equals approximately 6 grams, or roughly 2,300 milligrams, of sodium. The average American consumes 3,400 mg daily.

You'll also need to increase your fluids. Most dysautonomia experts recommend consuming two to three liters of hydrating fluids per day. Everyone is different, so ask your doctor how much salt and fluid are right for you.

1 gram of salt   = 388 mg of sodium
2 grams of salt = 775 mg of sodium
3 grams of salt = 1163 mg of sodium
4 grams of salt = 1550 mg of sodium
5 grams of salt = 1938 mg of sodium
6 grams of salt = 2326 mg of sodium
7 grams of salt = 2713 mg of sodium
8 grams of salt = 3101 mg of sodium
9 grams of salt = 3488 mg of sodium
10 grams of salt = 3876 mg of sodium
11 grams of salt = 4268 mg of sodium
12 grams of salt = 4656 mg of sodium
13 grams of salt = 5044 mg of sodium
14 grams of salt = 5432 mg of sodium
15 grams of salt = 5820 mg of sodium
16 grams of salt = 6208 mg of sodium
17 grams of salt = 6596 mg of sodium
18 grams of salt = 6984 mg of sodium
19 grams of salt = 7372 mg of sodium
20 grams of salt = 7760 mg of sodium
21 grams of salt = 8148 mg of sodium
22 grams of salt = 8536 mg of sodium
23 grams of salt = 8924 mg of sodium
24 grams of salt = 9312 mg of sodium
25 grams of salt = 9700 mg of sodium
26 grams of salt = 10088 mg of sodium

Building a New Life Post-POTS

Lauren Stiles was an avid snowboarder and a busy attorney in East Moriches, NY, when a snowboarding concussion in 2010 brought her fast-paced life to a screeching halt. The 31-year-old developed POTS and was bedridden for two years.

“I saw pulmonologists because I was short of breath, gastrointestinal doctors because I was nauseous, and cardiologists because my heart was beating so fast. I knew my symptoms were related because they all started after the concussion,” says Stiles. “I was looking for the universal theory of me and they were trying to tackle each symptom piece by piece.” This led to several misdiagnoses, including a diagnosis of carcinoid cancer, which is a form of neuroendocrine cancer.

Good Answers from Google

After nine months of struggling to understand what was happening to her body and receiving the runaround from doctors, one of whom accused her of being drunk, Stiles eventually turned to the Internet for answers.

“I stayed up until 3 a.m. reading medical journal articles on the subject, then emailed my husband a giant list of citations with instructions to print the articles and bring them to the hospital,” says Stiles, who highlighted portions of the text, made notes in the margins, and handed the ream of paper to her neurologist later that morning, saying, ‘I think I have POTS.’ 

“After reading the articles, he agreed with my diagnosis, wrote me a prescription for midodrine (a common POTS medication), and discharged me,” she says. Stiles searched for another year—and traveled 500 miles to the Cleveland Clinic Foundation—before she found a physician who had experience treating POTS.

A New Normal

Even after a nine-month diagnostic delay and two years searching for proper treatment, Stiles still considers herself lucky. In many cases, patients with POTS wait years, even decades, to find out why they’re lightheaded, dizzy, nauseous, and can no longer stand up without passing out. According to a survey of 700 POTS patients conducted by Dysautonomia International, patients waited an average of six years for a diagnosis. Some suffered for up to 30 years without answers.

“Like anyone with a chronic illness, you learn to live with your new normal. Finding the right diagnosis and connecting with others going through the same thing gives you peace of mind, because you know you’re not alone,” says Stiles, who co-founded Dysautonomia International in 2012 to help raise funds for research, educate patients and medical professionals, and raise awareness of autonomic disorders, including POTS. “We want to prevent other patients from suffering needlessly without a diagnosis, and to develop better treatment options for those who have been diagnosed.”

Stiles no longer works full time as an attorney, but she’s committed to raising funds for POTS research, co-authoring journal articles, and conducting surveys among the POTS community. In fact, Dysautonomia International recently teamed up with Vanderbilt University researchers to develop the first large POTS registry to track patients over the long term, identify patterns, and help predict prognostic outcomes.

“This experience has been life-changing for me,” she says. “You learn to pack as much as you can into the good days.”