Learning to live with POTS
Published 3:00 am Friday, February 24, 2017
POTS stands for “Postural Orthostatic Tachycardia Syndrome,” a heart disease. Patients suffering from POTS experience dizziness or fainting upon standing or getting up from a seated position. The cause is due to patients’ blood vessels not being constricted enough, which prevents enough blood flow from getting to the brain. As a result, the heart starts to beat faster in order to compensate, usually about 30 BPM (beats per minute) faster than the average person in people suffering from POTS.
In December 2016, I was diagnosed with POTS. I have always had fainting spells. My husband and I thought it was due to me having low blood sugar, but that was not the case.
After test and blood work results came back normal, I finally was referred to a heart doctor who had me take a stress test and more blood work. The results again were normal. My family physician recommended me to wear a heart monitor for a month to find out why I was having heart racing and fainting spells. I had palpitations several times while wearing the monitor, but nothing too abnormal. Next, I went to a neurologist. The neurologist is a doctor who helps patients with their nervous system. He recommended me to have a tilt table test. For the test, I was strapped to a metal table with an IV in my left arm while the neurologist took notes of my actions. I was titled flat on my back slowly for five minutes, then to an easy standing position, which would have taken 30 minutes but I only managed to stand for five of those 30 minutes before passing out. This confirmed that I had POTS. Today with the addition of two heart medications, I am better able to function. I am not completely 100 percent myself though. I have had to stop several of my activities. POTS patients should avoid extreme heat, donating blood, getting dehydrated, lifting objects over 10 pounds and climbing large flights of stairs. Common treatments for POTS are diets low in gluten and high in sodium; avoiding staying in bed all day long; keeping hydrated; and taking medications given by the doctor. Some challenges faced by patients with POTS are starting exercise routines tends to be more difficult; social anxiety from fear of fainting in social settings; attending work a school is hard due to stronger symptoms in the morning; and frustration due to others misunderstanding the disease. After being diagnosed with POTS I met a young high school girl named Daisy that knows what it is like to struggle through this disease. We are both struggling to cope with this heart disease. It is not easy to explain to friends or strangers why we have episodes of fainting in public. I can say that Daisy and I are blessed though because God is with us during this trial in our lives.
Daisy says, “This is really a bad illness at my age. I am 17 years old, can’t drive, and miss school, athletic life and social life. Mine hit hard when it did. I take three different medicines and stay tired no matter how much I sleep. I pass out a lot. It isn’t the easiest and I have people that ask way too many questions. I go day-by-day and do as much as I can. I lost a few friends by my ‘real one’ stuck around.”
Since this month is heart awareness month, I wanted to share our story to inform how serious this illness is for us and to educate others in understanding that POTS is a serious heart disease.