There is no known cure for POTS. Sometimes symptoms can diminish with age. Some patients have fairly mild symptoms and can continue with normal work, school, social and recreational activities. For others, symptoms may be so severe that normal life activities can be significantly limited. Statistics show that approximately 25% of POTS patients are disabled and unable to work. Fortunately, Paige is not in that group, but much to her chagrin, she does miss work a few days per month due to POTS. Here's the rub: most people who suffer from it look normal and healthy. That is why it is so hard to diagnose and is often misdiagnosed.
Here are some of the symptoms of POTS: headache; fatigue; sleep disorder; weakness; hyperventilation; low grade fever, tremors; sweating; anxiety/palpitation; dizziness/vertigo; and pre‐syncope/syncope (fainting). Paige's experiences with POTS included every one of these symptoms.
In a way, she was lucky. When it became overwhelming, she did not have to wait years to find out what the heck was going on or be told in the meantime it was all psychosomatic. After a major episode of hyperventilating and nearly fainting at work one day, she was sent to the emergency room and ultimately hospitalized. Her family already had a connection with a local cardiologist, Dr. Farhat Khairallah, who specialized in dysautonomia because her father, after fainting while driving, had been diagnosed earlier with a similar form. Dr. Khairallah was immediately called in. He put her through many tests, including a tilt test. This is a test many doctors would not even consider. During this test, blood pressure and heart rate are measured. The patient starts out horizontal on a table and is slowly raised to a 70% vertical position. One of the criteria for a POTS diagnosis is a heart rate increase of 30 beats per minute (bpm) or more, or over 120 bpm, within the first 10 minutes of standing. Paige's heart rate fluctuations were right in line. She realized after her diagnosis and learning more about this syndrome, she had been feeling symptoms for years, dating back to her teens, but it had worsened over time.
She explained, " My doctor believes I have been experiencing POTS symptoms since my teens. As a teen, I started having dizziness and fatigue anytime I would get up from a sitting position, I thought everyone experienced this so I was not concerned. My heart began racing so much in college I had a series of tests done, including wearing a heart monitor. I've always had trouble keeping my hands and feet warm. I even had chilblains (blistering caused by inflammation of small blood vessels) removed from my toes when I lived in Colorado in the 1990s. I was diagnosed as having Meniere's disease in my ears about 2006. In 2009, I had painful vasospasms when I was nursing our youngest. Consequently, I had to stop nursing him after six months. I had a low grade fever and felt awful for almost a year before my episode at work."
So what happened after Paige was diagnosed? Dehydration is known to be a big problem with many heart and autonomic malfunctions so one of the recommendations to counteract the symptoms were to a drink at least 90 ounces of water every day. Dietary restrictions, strangely enough, included increasing salt intake. Some researchers suggest increasing vitamin B-12 if blood tests show there is a deficiency because it improves the nervous system. She was never told that was her problem. Dr. Khairallah put her on Fludrocortisone to increase her salt retention, Midodrine which causes vasoconstriction, increases blood pressure which allows more blood to return to the upper parts of the body. He also gave her Adderall to increase vasoconstriction and blood pressure. In addition, Paige followed up with a doctor 200 miles away who specialized in POTS and, by the way, could relate on a personal level because he had POTS. She was advised to avoid caffeine (except when she needed an energy jolt to function) and alcohol. She was cautioned not to lean over or stand up too quickly because the blood would have a tendency to pool in her extremities and cause the dizziness. The most consistent research indicates a regular exercise program is the one thing that has the most positive effect on managing POTS. Paige was encouraged to keep her strength by exercising, i.e. walking or riding a stationary recumbent bike. Another suggestion was to maintain a realistic schedule, otherwise be prepared to suffer from fatigue when she overbooked herself.
The water consumption was not a problem. Paige incorporated an increase in the number of ounces she drank immediately. Increasing salt was easy. However, as a working mother of three, who experienced fatigue, dizziness, anxiety, and occasional low grade fever, trying to follow any consistent exercise routine or avoiding a hectic schedule has been nearly impossible. Although her symptoms are still sporadic, i.e. she has good days/weeks and not so good days/weeks, Paige manages to push through much of the time.
Her goal from the onset has been to try to maintain as much normalcy for herself and her family as possible. Sometimes she feels really good and is full of vim and vigor. She did cart wheels with her nine year old daughter at Thanksgiving for heaven's sake!!! Alas, the following week she could barely make it through a day of work much less deal with children, homework, soccer practice, etc. She dropped the medication after several months because they did not seem to help. Currently, her approach to managing POTS is acupuncture, taking a daily multi-vitamin and salt tablet, with an occasional B-12 vitamin. She plans to incorporate a stationary recumbent bike regimen in 2015.
I am often amazed at how much she is able to do under the circumstances. The good news is that she has a supportive husband, family and friends who kick in when she is going through a rough patch. Not everyone who has POTS has a support group. For those that don't, there are lots of support groups available, online and otherwise. If you are interested in learning more or getting help for yourself or a loved one, check out these websites: http://www.dysautonomiainternational.org; http://potsplace.com; http://dysautomia-support.meetup.com.
