Friday, June 5, 2015

POTS--taking a stand

I'm writing in response to the article on postural orthostatic tachycardia syndrome (POTS) (“Take a Stand,” February/March 2015, Fourteen years ago, our daughter, then 17, was diagnosed with cardioinhibitory syncope (which is a feature of POTS). For many years she had frequent episodes of fainting—up to seven or eight times a day at home and school and in public. The daily challenges of short-term memory loss and fatigue seemed insurmountable; they interfered with her schoolwork, social life, and daily life. Our doctor said she might outgrow it by the time she turned 35. She earned a college degree and married someone who can deal with the day-to-day challenges. It has been a very long road, but she has learned to manage many aspects of the condition. Raising awareness is key to helping individuals with POTS or any associated condition. We encountered so much unwillingness by public institutions to recognize our daughter's illness, which has few visible symptoms. Thank you for providing a spotlight for this and other conditions.
Michelle Whitford
Reno, NV

Take a stand:


  1. Kizilbash SJ, Ahrens SP, Bruce BK, Chelimsky G, Driscoll SW, Harbeck-Weber C, Lloyd RM, Mack KJ, Nelson DE, Ninis N, Pianosi PT, Stewart JM, Weiss KE, Fischer PR. Adolescent fatigue, POTS, and recovery: a guide for clinicians. Curr Probl Pediatr Adolesc Health Care. 2014 May-Jun;44(5):108-33.

    Many teenagers who struggle with chronic fatigue have symptoms suggestive of autonomic dysfunction that may include lightheadedness, headaches, palpitations, nausea, and abdominal pain. Inadequate sleep habits and psychological conditions can contribute to fatigue, as can concurrent medical conditions. One type of autonomic dysfunction, postural orthostatic tachycardia syndrome, is increasingly being identified in adolescents with its constellation of fatigue, orthostatic intolerance, and excessive postural tachycardia (more than 40 beats/min). A family-based approach to care with support from a multidisciplinary team can diagnose, treat, educate, and encourage patients. Full recovery is possible with multi-faceted treatment. The daily treatment plan should consist of increased fluid and salt intake, aerobic exercise, and regular sleep and meal schedules; some medications can be helpful. Psychological support is critical and often includes biobehavioral strategies and cognitive-behavioral therapy to help with symptom management. More intensive recovery plans can be implemented when necessary.

    Mack KJ, Johnson JN, Rowe PC. Orthostatic intolerance and the headache
    patient. Semin Pediatr Neurol. 2010 Jun;17(2):109-16.

    Orthostatic intolerance (OI) refers to a group of clinical conditions, including postural orthostatic tachycardia syndrome (POTS) and neurally mediated hypotension (NMH), in which symptoms worsen with upright posture and are ameliorated by recumbence. The main symptoms of chronic orthostatic intolerance syndromes include light-headedness, syncope or near syncope, blurring of vision, headaches, problems with short-term memory and concentration, fatigue, intolerance of low impact exercise, palpitations, chest pain, diaphoresis, tremulousness, dyspnea or air hunger, nausea, and vomiting. This review discusses what is known about the pathophysiology of this disorder, potential treatments, and understanding its role in the patient with chronic headache pain.

    Johnson JN, Mack KJ, Kuntz NL, Brands CK, Porter CJ, Fischer PR. Postural
    orthostatic tachycardia syndrome: a clinical review. Pediatr Neurol. 2010

    Postural orthostatic tachycardia syndrome was defined in adult patients as an increase >30 beats per minute in heart rate of a symptomatic patient when moving from supine to upright position. Clinical signs may include postural tachycardia, headache, abdominal discomfort, dizziness/presyncope, nausea, and fatigue. The most common adolescent presentation involves teenagers within 1-3 years of their growth spurt who, after a period of inactivity from illness or injury, cannot return to normal activity levels because of symptoms induced by upright posture. Postural orthostatic tachycardia syndrome is complex and likely has numerous, concurrent pathophysiologic etiologies, presenting along a wide spectrum of potential symptoms. Nonpharmacologic treatment includes (1) increasing aerobic exercise, (2) lower-extremity strengthening, (3) increasing fluid/salt intake, (4) psychophysiologic training for management of pain/anxiety, and (5) family education. Pharmacologic treatment is recommended on a case-by-case basis, and can include beta-blocking agents to blunt orthostatic increases in heart rate, alpha-adrenergic agents to increase peripheral vascular resistance, mineralocorticoid agents to increase blood volume, and serotonin reuptake inhibitors. An interdisciplinary research approach may determine mechanistic root causes of symptoms, and is investigating novel management plans for affected patients.

  2. Postural Orthostatic Tachycardia Syndrome (POTS) is not a specific disease but a syndrome which is a collection of symptoms. It is clinically defined as a heart rate increase of 30 beats per minute or more from the lying down to the standing position within 10 minutes or less. The diagnosis for POTS is usually established when a patient fails the Tilt Table Test: patients usually experience extremely rapid heart rate increase (tachycardia) over 100 bpm and/or have significant changes in blood pressure. Some patients pass out (syncope). The reason for this problem is a dysfunction of the autonomic nervous system (dysautonomia).

    POTS symptoms are widespread and can vary from day-to-day, because the autonomic nervous system plays an extensive role in regulating functions throughout the body. The most common symptoms are:

    Orthostatic intolerance Light/noise sensitivity

    Tachycardia Bradycardia

    Headaches Fatigue

    Dizziness Exercise intolerance

    Chest pain Gastrointestinal issues

    Shortness of breath Insomnia

    Blurry vision Joint/muscle pain

    Tingling in the legs Feelings of heat

    Sweating Muscle weakness

    Nausea Menstrual irregularities

    Fainting Thermoregulatory issues

    Tremors Low mood

    Brain fog Frequent urination

    Anxiety Cognitive impairment

    Seizures/convulsions Adrenaline rush!about4/c1p73

  3. There is nothing to be concerned about.

    Have you been told this by your medical provider?

    Yet you have trouble thinking, you’re tired all the time and frequently feel cold. You probably “gray out” first thing in the morning when you get out of bed or stand up too quickly. When the nurse takes your blood pressure (BP) at your appointment and it is 100/60 or 80/50 she says, “There is nothing to be concerned about.”

    Um, what’s wrong with this picture!?

    Symptoms like this can indicate a problem and craving salt is a clue. The craving is due to an inability to hold on to sodium. FYI, the backbone of salt is sodium chloride. If you’ve ever been in an emergency room, there’s a monitor with an alarm that goes off as soon as your diastolic BP dips below 50 or your pulse drops below the normal threshold. When this happens, it means your body is not getting adequate blood flow through the vessels and the pressure drops. Many of you have chronically low pressure (90/60 or lower) and walk around daily with symptoms that get ignored.

    Let’s face it, unless you actually faint, or have significant lightheadedness or dizziness, you will be dismissed, possibly for years. I’d like you to learn about the condition of low blood pressure, sometimes termed “orthostatic hypotension.” It’s the opposite of “hypertension” or high blood pressure which is what most people fear because it contributes to heart attack and stroke.

    The condition of POTS (Postural Orthostatic Tachycardia Syndrome) is another huge overlooked cause for this and one I urge you to evaluate yourself for. A prescription for the drug Florinef (fludrocortisone) could very well become your miracle drug, and a true game changer. How many times do you hear me say that about a medication?!

    Now, ask yourself the following questions:
    •Does my pulse or blood pressure run low?
    •Does my heart quicken when I stand up?
    •Do I feel weak or tired?
    •Am I dizzy frequently?
    •Do I crave crave salt?
    •Do I get up reeeeaally slowly so I don’t pass out?

    Test yourself. Any physician can do this. Specialists will often employ a tilt table for an accurate diagnosis.