I often receive email from people who read my blog. Some ask questions, some share their story, some just like to vent – all are welcome. I have even made a few email/texting friends that way, which has been a huge unexpected bonus to writing this blog. You are welcome to email me anytime at Lindsay@Dysautonomiac.com. I try to answer every email, so if you don’t hear back from me, resend it. I’m not an expert on dysautonomia/postural orthostatic tachycardia syndrome (POTS) and I’m not going to give you medical advice. However, I’d love to hear your story and have been told I make a pretty good sounding board.
With the various emails I receive, I start to notice patterns in the questions asked. I may, from time to time, address some of the frequent questions in a post (without mentioning any names of course). Some recent common questions are:
Q: During my tilt-table test, my heart rate rose (at least 30 beats per minute), but my blood pressure (BP) stayed the same. My doctor concluded that I don’t have POTS because my BP didn’t drop. Is that correct?
A: Your doctor is an idiot. I’m sorry – that was rude. I’m sure s/he is brilliant and kind. But, with all due respect, your doctor is an idiot.
POTS has nothing to do with blood pressure. The diagnostic criteria for POTS is a rise in heart rate of at least 30 beats per minute within ten minutes of going from sitting to standing (in children it must be a rise of at least 40 bpm). Blood pressure may decrease, increase, or stay the same upon standing. I have seen mine do all 3 at different times. Many other symptoms are often found with POTS, including dizziness, lightheadedness, fatigue, blood pooling, headaches, nausea, pain, palpitations, brain fog, but technically the tachycardia upon standing is all that is needed for a diagnosis.
If your heart rate increased significantly upon standing and your BP remained constant, you still have POTS. Hun, if your doctor told you otherwise, it’s time to find a new doctor. One of the downsides of having a relatively new/unknown condition is that you will often know more than whoever is treating you. But don’t settle for a doctor who doesn’t even understand what you have.
Life is too short for bad sex, cheap beer, and doctors who are idiots. That’s my new motto. Write it down.
Q: My doctor said I might have POTS. But I don’t faint, and everything I have seen on the internet says fainting is a symptom of POTS. What gives?
A: Oh, friend. Dear friend. I could have written this question 5 years ago. This exact question. A cardiologist suspected I had POTS, but when I went home to look it up, I was convinced I didn’t. At that point, I had only fainted once and everything I read indicated regular fainting was a part of POTS. I’m a bit of a tech nerd, so let me tell you what I know about the internet. It’s good for two things: watching porn, and reading a bunch of shit that isn’t true.
Some people with POTS faint. Many don’t. I can count on two hands the number of times I have fainted over the past 7 years. If I have been standing for more than 90 seconds, chances are good I’m lightheaded. If you make me stand still for another 5 minutes, chances are good I will faint. Which is why you will never see me standing still for 5 minutes.
You may have POTS and never faint, or maybe you faint regularly. Like I said above, if your heart rate increases 30+ bpm upon standing, you have POTS. Congratulations! It sucks.
Friends with POTS, what are common misconceptions about POTS that you have heard?
“This very heart which is mine will forever remain indefinable to me. Between the certainty I have of my existence and the content I try to give to that assurance, the gap will never be filled. Forever I shall be a stranger to myself.” – Albert Camus
Smell ya later.