The month of February is the American Heart Month. It is also the month where I momentarily step away from posts about genealogy, history and grad school to talk about a far more serious matter- heart disease. If you have not done so please visit the American Heart Association’s website and speak with your doctor. Please note that I am not a doctor and medical concerns should be discussed with your doctor.
Every February while the spotlight is on heart health I take the opportunity to talk about a condition that I have: Postural Orthostatic Tachycardia Syndrome also known as P.O.T.S. hopefully in doing so I can help spread awareness and help even one person, after all it was one post on a discussion board that proved to be life-altering for me. Unfortunately POTS is a condition that can mimic the symptoms of numerous other conditions including chronic fatigue, anxiety and in my case even asthma. It is a condition that when I go into a doctor’s office, urgent care or emergency room I find myself having to explain what it is because the nurses, doctors and interns have never heard of it…that is never a very comforting feeling. It is also a condition where when I tell people about it they make a face and say “What’s that?” or “Didn’t a patient on House have that?” When you find out a condition you have was portrayed on House you know you are screwed.
From what my cardiologist and I have been able to determine through a review of my medical history, symptoms of POTS first started to emerge when I was about 13- a common age for this to happen. I was diagnosed when in March 2010. Nearly twelve years later. Twelve years of having such an odd combination of symptoms that I was misdiagnosed with asthma- due to the tightness of the chest, pain in the chest and shortness of breath. The doctors were baffled when my oxygen levels did not drop during an ‘asthma attack’ and inhalers only seemed to make the symptoms worse. Twelve years of dealing with an unknown trigger of migraines, off and on problems with fatigue and worst of all the accusation that it was “all in my head” and I was suffering from an anxiety condition. Ironically, dealing with the accusations did end up triggering social anxiety.
Twelve years of heat intolerance and exercise (cardio) intolerance that was usually followed by my vision going black or spotty, ringing in my ears while my heart pounded so hard I thought it was going to jump out of my chest and horrible dizziness. Then of course there were all the days I missed in middle school and high school. Instead of learning about algebra I learned when it comes to absences that the staff cannot understand students are quickly labeled truants and treated as guilty until proven innocent. Eventually I switched to long distance education via correspondence to earn my diploma. I missed homecoming games and never had a prom. I am not sharing any of this to try to elicit sympathy, I am very fortunate to not be among those who are utterly debilitated by the disease let alone able to keep it under control without medication. I am doing this because out there may be a teenager who is experiencing the same thing, wondering is something wrong with me? Or is it in my head?
The turning point came in 2010 when I was pregnant with my son. POTS is a strange disease, it appear to go away then come back and is aggravated during pregnancy. I remember my first “POTS attack” during that pregnancy. I had stayed home from work- too tired, dizzy and nauseous to work. I spent a good chunk of the day on the sofa. I stood up to go to the bathroom. Instantly and all at once my heart pounded as it raced, my throat felt strange, my ears rang, my vision went black, everything started spinning, I was instantly even more nauseous and dizzy and how I remained to stay upright I will not ever now. Afterwards I was so dizzy that I had to crawl to get to the bathroom. After dozens of tests, being bounced back and forth between specialists I was referred back to my OB-GYN and given a diagnosis that was essentially the equivalent of “over-reacting/crazy pregnant lady syndrome.”
One night crying at my laptop feeling like I had gone mad I came across a discussion board where a woman related her experience with all the same symptoms I had been experiencing but with a different diagnosis- POTS. I Googled it and was amazed to see symptoms such as the tingling and coldness in my hands and legs listed. Since POTS involves the neurological system I went to my neurologist. She practically laughed me out of the office and refused to even do the simple test for it. After several phone calls I found a cardiologist in my area who had experience treating patients. In one appointment I was diagnosed because they did one thing all of the other doctors never did and that the MRIs, EKGs, ECGs and lab work could never catch. My cardiologist’s nurse took my pulse when I was sitting, took my pulse when I stood up…they did not need to take it again to know I had POTS as my heart rate had jumped by 30 in less than a minute.
The sense of relief that comes with finding that one last piece of the puzzle is indescribable. Finally I knew what was wrong and I could do something about it. Until about three or four months after I had my son I had to take daily medication. After that I was able to gradually reduce the amount of medication I was taking until I could stop completely. I still have about 2-3 days a month where my symptoms are severe enough to interfere with my daily routine. Through the reduction of stress, regular practice of yoga , lifestyle alterations- including avoiding nasty energy drinks, avoiding going outside when it is too hot, more recently efforts to condition my heart more through cardio exercise and simply paying enough attention to my body to know when I need to give myself a break I have been able to manage it. The frequency and severity of migraines has dramatically fallen, from 1 or more a week to maybe 1 or 2 month.
The moral of the story is pay attention to your body, especially your heart. What your heart does can impact you in unexpected ways. Educate yourself because at the end of the day you are your best health advocate. For those who work in the health field, educate yourself and encourage your staff to do so.
To find out more about Postural Orthostatic Tachycardia Syndrome go to:
The American Heart Association’s website is: