POTS. No, not marijuana or pots and pans that you cook with. I’m talking about Postural orthostatic tachycardia syndrome. My life was completely changed when I was diagnosed with the chronic illness, POTS, in June of 2008. I never wanted to blog about my illnesses (yes, there are more), but I feel like I have to because it’s such a big part of my life and I know others are struggling with this debilitating illness.
What is POTS? I’m obviously not a doctor, but there have been many times where I felt like I knew a lot more then them. So, I’m going to try and explain this in the simplest way. It’s a form of dysautonomia. I lost you already, didn’t I?
“Dysautonomia is an umbrella term for various conditions in which the autonomic nervous system (ANS) malfunctions. Dysautonomia is a type of neuropathy affecting the nerves that carry information from the brain and spinal cord to the heart, bladder, intestines, sweat glands, pupils, and blood vessels.” Yes, I did just copy and paste that from wikipedia. We’ve all done it.
Okay, here we go again- POTS is a form of dysautonomia that mainly affects the patient when they’re in the upright position or when he or she changes positions. Personally, my blood pressure is typically low (90/40) and drops even more when I stand up. While my blood pressure is going down, my heart rate is typically jumping up to almost 200 beats per minute. (Fun Fact: I used to have a heart monitor that my doctors thought wasn’t working correctly because it would read my heart rate at almost 250 beats per minute. It wasn’t broken, I was.) So, heart rate goes up, blood pressure goes down and so does Emily. Yup, that’s right I drop unconscious. Lately, knock on wood, it hasn’t been happening that often, but back in high school it was a daily struggle. Think of all the things your body does subconsciously; heart rate, blood pressure, nervous system, digestive system, ect… With POTS, they basically throw tantrums and stop working. Not all at once and sometimes they’re all working fine, but when one goes haywire I can become debilitated.
Let’s start with my head, besides the fainting. How often does someone ask you if you are on drugs? Happens to me a lot. My eyes get totally glassy and I get this “duh” look to my face because I’m so out of it. I’ll get so disoriented that I’ll move my head and it will take my eyes a second to catch up. On a really bad day, me carrying a conversation is such a task. I have literally made up words and have not made any sense to my friends and family before. For example, if this blog post isn’t flowing as well as usually and not making sense, blame it on the POTS, for real.
My eyeballs! I’ve always have had okay vision. I’ve needed glasses for close work, but I can function without them. With POTS, one day my vision can be perfect and the next day I have my glasses glued to my head. Sometimes I can’t even see. Pretty cool, huh? Just kidding, it’s pretty terrifying, especially if I’m somewhere new. My family can tell when this happens because I put my hands on the walls and feel my way to the nearest chair. I’m a pretty good navigator, they call me Sacagawea. Haha, not really. My friends and family do tell me I have zombie eyes sometimes, though; One pupil will be really big and the other will be super small. Hence, zombie eyes.
Okay, down to my heart, it’s tachy. Tachycardia that is. I thank God everyday that the mechanisms of my heart are all okay, but it’s pretty scary and at times painful to all of a sudden have your heart rate shoot up.
Alright, to be completely honest, my eyes are doing weird things right now, so I’m going to wrap this part up and finish in a day or two.
POTS is considered an invisible illness. Most of the time I just look super tired and out of it. With that, be kind to all and never judge because someone may be fighting a battle you know nothing about. Until next time! xoxo