What in the World is POTS Syndrome??!

To many people, I look like just a normal college-aged kid. That is, until I'm passed out on the floor.

That's when the people around me suddenly realize... I'm different. My body is different.

The thing that makes me different is called POTS. Postural Orthostatic Tachycardia Syndrome is a complicated health condition (and I'm by no means a doctor), but I'm gonna take a stab here at explaining POTS-- to the best of my understanding and experience-- for those of you who are genuinely curious about how my body works.

Postural: Basically, My Body is Allergic to Gravity

Just chillin' on the couch? I'm fine.

But as soon as I change my posture (thus the term postural) and stand up, gravity happens. And gravity is a powerful force. 

But the human body is stronger than gravity! The way things NORMALLY work in response to standing up is that your heart rate temporarily increases by 10-15 beats per minute. This is to counteract a small drop in blood pressure caused by the increased gravitational pull of standing. But this raise in heart rate is short-lived. Your body's long-term response to standing upright is to tighten up its blood vessels (particularly the ones in your legs) to help compensate for the increased pull of gravity on your blood.

Then as soon as your blood vessels constrict (which normally happens within 30-60 seconds of standing up), your heart can return to normal and continue happily pumping blood to every part of the body just like it was before. And life goes on and everybody is happy, because every organ in your body is getting their fair share of blood (and oxygen and nutrients and all that other good stuff carried in your blood).

This is how a healthy person's body works. With the help of chemical messengers, your autonomic nervous system regulates much of this process. You don't even have to think about vasoconstriction when you stand up... it just happens. Your body contains built-in protection against the force of gravity which pulls on your blood.

But a body with POTS tells a different story. Somewhere, somehow, my autonomic nervous system got damaged. So now, when I stand up, my body doesn't compensate correctly. The chemicals that are supposed to trigger constriction of my blood vessels don't get released. So guess what happens? Gravity wins. My blood sinks toward the earth unchecked. And my body starts to freak out.

Orthostatic: The Longer I Stand Still, the Worse it Gets

When I don't have the option to sit or lie down, I do the next best thing: I move.

Even (or especially) when I'm stuck standing in the middle of a super important conversation, my toes are always wiggling inside my shoes. I've learned to surreptitiously squeeze and release my calf and thigh muscles as I talk. And I shift my weight back and forth between my heels and my toes and from one foot to the other as I wait out the conversation. 

All this moving of my skeletal muscles is a desperate attempt to keep blood from pooling in my legs. When my skeletal muscles contract, they squeeze the adjacent blood veins and encourage blood to return to my heart.

But moving around can only mitigate my symptoms for so long. Even with the help of my legs' skeletal muscles, the organs in my body don't get enough blood to function properly. 

Especially my brain. Since my brain is at the top of my body (and my blood is pooled at the bottom), it often suffers the most. "Brain fog" is my everyday existence; basically, I literally cannot think on my feet.

If I'm standing up, then my brain is not getting fed enough blood to formulate clear thoughts. Everything is jumbled and I lose the ability make sense of the world around me. I have to claw through a thick fog in my mind just to string voices together enough to understand if someone is talking to me. So if you feel tempted to give me a pop quiz in this state... don't. Based on my answers, you'd probably wonder how I ever graduated from kindergarten.

Now I want you to understand: If I lie down, everything will be fine. Within a few seconds, my blood will happily flow back to my heart and head (especially if I prop my legs up a bit), and all my organs will be happy. By the end of a few minutes, I will feel like a normal girl again who can totally ace a college-level pop quiz.

But if I don't lie down, my body will begin to shut down. My hands start shaking. My limbs go weak. My vision gets blurry and goes completely dark. And I have maybe three seconds to lie down on the ground-- wherever I am, however dirty it may be-- before I entirely lose control of my body. (Many POTS patients completely faint at this point, while others only experience a crippling sense of near-syncope. I experience near-syncope and then end up in a conscious, limp paralysis until my body is able to recover from the shock of being upright.)

Tachycardia: My Heart Can't Stop Working Overtime

Tachycardia is the medical term for a fast heart rate. This is the most iconic symptom of POTS, especially when standing upright.  A POTS diagnosis requires an increased heart rate of at least 30 beats per minute (40 bpm for children) within 10 minutes of standing up from a lying position.

But those numbers are just the minimum. My heart often jumps from 60-65 bpm while lying down to 130-140 bpm while standing. That's an increase of 65-80 beats per minute, just from a simple postural change. My heart rate doubles every time I stand up. I don't have to go for a run to get exercise; my cardio workout for the day is just standing up.

But why? Why does my heart hammer like a woodpecker every time I stand up? The gist of it is that my heart knows something is wrong. And that poor little heart is trying as hard as he can to fix the problem.

As soon as they realize they aren't getting fed the nutrients they need, all the organs in my body start screaming at my heart to DO SOMETHING about the blood shortage.  So my heart does the only thing he can think of: he beats faster. Maybe, just maybe, if my heart can pump hard enough and fast enough, he can send the blood that is pooling in my legs back up to my brain where it is so desperately needed. 

But it doesn't work. No increase of heart rate can substitute for the power of vasoconstriction. My heart is able (just barely) to keep me conscious, but that's all. The power of gravity is too strong for the poor little guy to overcome. 

But my heart is valiant and stubborn. He doesn't give up. So he keeps desperately pounding away, hoping that one day his efforts will amount to something. 

(And yes, I do realize I just personified my heart in the last few paragraphs. It's about time, honestly... he does do a lot of work for me. I think I'll name him Fred. What do you think?)

Syndrome: Oh Honey, This is Just the Beginning...

POTS syndrome is classified as a dysfunction of the autonomic nervous system. Therefore the condition is termed a dysautonomia. And since my autonomic nervous system controls much, much more than just my heart rate, I feel the effects of POTS in many areas of my body.

If I were to fully describe every one of my symptoms, this blog post would never end. That's why this medical condition is called a syndrome: POTS is a collection of symptoms, not just one symptom. This is also what makes POTS confusing and hard to diagnose, because it shares symptoms with many other medical conditions. And every POTS patient experiences a different combination of symptoms to varying degrees.

Here are the symptoms (besides the ever-annoying tachycardia) that I notice every single day:

Fatigue. Unending, eternal fatigue. This is absolutely #1 on my list of symptoms. When I say the words "I'm tired", I don't mean that I need a 30-minute nap and then I'll feel fine. I'm trying to somehow express that I am utterly, completely, totally drained of every. single. ounce. of energy that I ever dreamed of in my entire life. If you somehow think I have energy... I promise you, I'm faking.

Hypersensitivity, Headaches, and Brain Fog. The world is often too bright, too loud, and too exciting for me. My nervous system can't handle auditory and visual stimulation very well. Best case, I get a nagging headache. Worst case, my body shuts down and I wind up stuck in a conscious-but-paralyzed POTS seizure.

Lightheadedness and Vision Abnormalities. Every single time I stand up (and other random times when I'm doing nothing at all), my vision goes black for a few seconds and I feel weightless-- like I'm floating. Then my vision slowly comes back just enough to see hundreds of glittery stars winking back at me. At some point too I usually lose my balance and have to grip the wall until the stars go away and my vision returns to normal. (I honestly used to think this happened to everyone... then I learned that experiencing near-syncope multiple times every day isn't actually supposed to be a normal everyday activity!)

Wacky Body Temperature. I am always FREEZING cold, especially my fingers and toes. I can never get warm enough. My fingers often physically hurt because they feel like ice cubes. Just for fun, sometimes I'll slip my fingers behind my boyfriend's shirt collar so I can watch him shrink away from my snow-queen touch. But then when my boyfriend turns around and hugs me, he complains that I am as hot as a furnace. My blood circulation is just so poor that my raging body heat doesn't spread out to my fingers and toes. 

Exercise Intolerance. I used to jog for fun when I was in junior high. I absolutely loved the satisfaction of a good workout, and I was working my way up to running a 5K seamlessly. But the last time I tried to go for run (two years ago, a week before my POTS syndrome hit in full force), I didn't get far before I found myself curled up on the ground crying in pain. My ears were ringing, shrieking at me. I held my head in my hands, expecting it to burst any moment from the overwhelming pressure inside. My heart was in my mouth and pounding harder than I ever thought possible. My stomach was sick and I couldn't breathe. I tried to drink water, but it only made the waves of nausea hit me harder. And as I lay there on the ground crying and gasping for breath, I began to realize that my body had given up. My strength was gone. And my jogging days were over.

A few more issues relating to my POTS bother me at least a dozen times every month or so: Insomnia, Shakiness, Chest Pain, Excessive Sweating, Nausea, and Gastrointestinal Issues. 

I also used to regularly experience conscious-but-paralyzed non-epileptic POTS seizures as well, but now that I am on the right blood pressure medication I have not experienced a seizure for over a year now. And I praise God for that, because those were definitely NOT fun!

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For more information about POTS:
POTS Visualized in a Short Video by Dysautonomia International
20 Signs You Might Have POTS from The Mighty
Cleveland Clinic's POTS Management Manual
Colorful Data from a POTS Survey Conducted by MyHeart.net
10 Facts About POTS from Dysautonomia International
A Detailed Explanation of POTS from Johns Hopkins Medicine
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Hopefully this post comes across to you as informative and not just me complaining about all my woes. Sure, POTS is hard, and my body is weak. But I have Jesus Christ on my side. So when I am weak, I know that I can count on Him to give me strength. That's why, even though life is rough for me sometimes, I am determined to show Christ's love to others around me who are struggling too.

This week (or anytime), if you send me a message, I would love to pray for you as you battle the demons in your life. Let me know what I can pray for! :)

Stay strong. I'm praying for you. 

Bonjé Gioja

P.S. If you're a POTSie, what are your worst symptoms? Or do you know someone who has POTS? Does my explanation make sense to you, or is POTS still a super confusing topic? (Don't worry, I'm still learning about it too!) Let me know your thoughts in the comments below.

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Finally, An Answer: My POTS Diagnosis Story, Part Seven

Hey there, friend! This is the last post in this series telling the story of how I found my POTS diagnosis. If you missed the beginning, catch up here:

I Promise I'm Not On Drugs: My POTS Diagnosis Story, Part One

The Most Terrifying Night of My Life: My POTS Diagnosis Story, Part Two

Leaving My Health Behind in the Dust: My POTS Diagnosis Story, Part Three

My Illness Forced Me to Accept Help: My POTS Diagnosis Story, Part Four

Dear Doctors, Please Stop Telling Me I'm Pregnant: My POTS Diagnosis Story, Part Five

My Symptoms are More than Just Mental Illness: My POTS Diagnosis Story, Part Six

"That can't be right. Check it again."

The girl next to me in my CNA class once again inflated the blood pressure cuff on my arm. The air hissed out slowly as she released the valve. She wrote the numbers down, but her face was puzzled. 100 mmHg systolic, 40 mmHg diastolic. The numbers didn't make sense. They didn't fit within the range of "normal".

She called our professor over to explain what she was doing wrong. And I, the ever obedient guinea pig, sat still in my chair as another cold stethoscope was placed inside my elbow and my arm was once again squished tight by the blood pressure cuff.

"No, you did everything right," my professor told my classmate. "Her blood pressure is just wonky. She probably skipped breakfast this morning, that's all."

Class then proceeded as normal. I probably managed to nod my head appropriately a few times and fake a fair impression of paying attention, but I wasn't listening one bit.

I was busy thinking. Inside my head, a long-buried worry about my health had started to once more rear its ugly little head. 'My blood pressure is wonky.' What does that mean? I know I didn't skip breakfast this morning. Should I go to the doctor? I don't want to go to the doctor. Doctors never help anything. They definitely didn't help me when I was sick before. It's probably nothing. I'm probably fine. 

As soon as I got home from class, I dug through my box of spare toiletries. I found my home blood pressure cuff, pulled it out, and took a reading. Waited anxiously while the cuff inflated and then deflated.

The numbers on the screen stared back at me: 78 mmHg systolic, 49 mmHg diastolic. My blood pressure was even more abnormal than before. It was low, too low. Too low to be healthy.

I changed the batteries in the cuff. They were old... maybe they were causing it to malfunction? Nope. New batteries gave me the same result.

Something's wrong. Something's very, very wrong with me. I pulled out my phone and started searching the internet for an explanation. Of course, the internet didn't help my anxiety at all. (Why do I ever think searching the web for health advice is a good idea? I usually end up either with cancer or dead by the end of my search results.)

At least the things I read online made sense. All summer I had been struggling to focus, struggling to have any amount of energy. Seeing stars in my vision or even blacking out for a few seconds had become part of my normal daily routine. And anytime I tried to help my mom on the farm, my head and chest would always start pounding so hard right away that I always had to quit and return to my bed.

But I had grown so used to doctors dismissing me that I had dismissed my own symptoms. Why worry about my body when my symptoms are "all in my head" anyway, right?

That night during dinner, I mentioned my blood pressure readings to my parents. My mom instantly decided that my blood pressure cuff must be broken. There was no way my blood pressure could be that low.

So my dad tried on my blood pressure cuff and became concerned when his blood pressure reading was normal.

The blood pressure cuff wasn't broken. I was the one who was broken.

My dad set up an appointment for me at our local clinic. I hadn't been to the doctor in months, not since I had received my diagnosis of Functional Neurological Disorder. My doctors had essentially written me off as crazy. So I had given up on medical doctors; my counselor and my psychiatrist had been my only source of professional help for at least a year.

I remember an anxious, sick feeling in my stomach as I waited for my appointment at the clinic. I was afraid that whatever new doctor I saw would tell me I was perfectly fine, just like all the other doctors had. I didn't even want to hope for a diagnosis. If I had any hope, the reality was that I would probably just be disappointed all over again.

Standing in the shower for 20 minutes raised my pulse to 139 bpm.
Lying down a few minutes later dropped my pulse immediately by 72 bpm.
This change in pulse due to posture changes is typical in POTS patients.

In the days leading up to my appointment, I monitored my blood pressure obsessively. I was afraid my symptoms would disappear before I could show them to the doctor. But my readings were consistently low, especially the diastolic number.

Then I began to realize that something was wrong with my pulse, too. My heart rate was totally fine as long as I was lying or sitting down. But as soon as I stood up, my pulse would always skyrocket. It was weird. I made a note to discuss my crazy heart rate with the doctor as well.

Somewhere between all my summer classes and my job in a long-term care facility, I managed to keep my appointment. I was so nervous I wanted to throw up, but I forced down my anxiety and went in to the clinic.

I was helped by a nurse practitioner instead of a doctor. In a very professional manner, the nurse practitioner at the clinic listened to my concerns and then ordered a whole bunch of tests to look for problems.

Then I waited. (Ugh, I always hate the waiting part. Don't you?)

At my follow-up appointment, the nurse practioner explained that my test results looked relatively normal. The only thing she found in my blood was a vitamin D deficiency and a slightly low iron levels. Everything else was normal. My electrocardiogram was normal. My complete blood count was "within normal range". My Lyme disease antibody test was negative. I was utterly, sickeningly normal.

Tears fell from my face as the nurse practioner went on and on, explaining that I should be thankful for my low blood pressure because many people struggle with high blood pressure.

My thoughts drowned out her voice. Why did I ever come back to a doctor? The answer will always be the same. They will never be able to help me. I'm just broken, and they can't fix me. Nobody can fix me. Nobody can see the pain I'm in, and nobody could take the pain away for me even if they cared enough to see it. 

No matter how hard I tried, I couldn't stop my tears. I was utterly defeated. I felt like my whole world was crashing down on me all over again. This whole blood pressure issue was just another symptom to add to my list of things that my doctors could not explain.

The nurse practioner eventually noticed that I was crying and asked if I was okay.

"No," I told her. "I'll never be okay." I tried to keep my composure, but I couldn't. Everything just started spilling out.

I told the nurse practioner about all the doctors before who had told me I was normal just like she did. I told her I knew it wasn't all in my head. I knew something was wrong with my body. I had felt so sick for so long, and there had to be an explanation. My 20th birthday was in three days. So why did I constantly feel like I had the body of an 80-year-old? It wasn't fair. I didn't even want to be healed anymore. I just wanted answers. I just wanted to know what was wrong with my body for once in my life.

After handing me a plethora of kleenexes (which I promptly soaked with tears and snot), the nurse practitioner asked me to explain my other symptoms. We knew my blood was fine, but did I have any other ideas about what might be wrong?

I sheepishly told the nurse practioner about my online research. By matching my symptoms to articles and stories on the web, I had formed three guesses: Lyme disease, anemia, or Postural Orthostatic Tachycardia Syndrome (POTS).

We already knew that my Lyme disease test was normal. And while I did have very slight anemia, it wasn't severe enough to cause symptoms like mine. The only guess that I had left was POTS.

So the nurse practioner referred me to a cardiologist. At the same time, she warned me that "the guys up there in Cardiology think they know everything and can be pretty harsh to patients if they think you don't belong there."

I decided to take the chance.

And you know what? My cardiologist was actually really nice. I guess that means I belonged there.

I showed him my blood pressure and pulse data that I had gathered during the last two months.

"Very interesting," he said. Then he ordered a whole bunch more tests ("To make sure I don't miss a hole in your heart or something"), but he asked me if I had ever heard of POTS.

I waited months for my follow-up appointment (he must be a very busy doctor). Then my cardiologist walked in the exam room door and looked at my records. He told me that the echocardiogram, the stress test, the holter monitor readings, all the tests, were normal. My heart was fine.

My cardiologist stopped talking and looked up from my records. I think he expected me to be happy. (After all, I had just been told the good news that I didn't have a hole in my heart.)

I looked back at him stunned.

"So... there's nothing wrong with me? What do I do now?" I asked him.

"Oh, well, there's no question that you have POTS," he said. "All the tests you did were simply necessary to rule out any other conditions. Have you ever heard of POTS?"

I exhaled in relief as my cardiologist once again launched into an explanation of POTS. He obviously didn't remember that we'd already had this conversation at my last appointment (like I said, he must be a very busy doctor), but that was okay. I let the doctor talk as I smiled and my soul heaved a sigh of relief.

I finally had my answer. I finally knew what was wrong with me.

I finally knew that I had Postural Orthostatic Tachycardia Syndrome.
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Stay strong this week. I know life is crazy right now, but finish this semester strong. You got this.

I'm praying for you.

Until next week (or whenever I recover from all my final exams),

Bonjé Gioja
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P.S. What's the worst part about waiting for your doctor appointments? Have you ever broken down crying in front of a doctor? How did you finally find your diagnosis? I'd love to hear your story in the comments below!

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Wishing You a Happy Stay-at-Home Easter! :D

Happy Easter to all you special peeps! Even though we're all stuck at home, I hope that you and yours have found your own way to celebrate the Lord's resurrection on this special day.

I am choosing not to write a whole blog post this week. Instead, I'm gonna spend some extra time with the people I love (at least, the ones who live with me).

But in order to quell any disappointment on your part, I have a peace offering: an endearing (if somewhat old-fashioned) Easter Sunday photo from years past.

Every year, my family used to spend Easter at my adopted grandmother's house. After eating LOADS of food and chocolate Easter candy, I always loved traipsing outdoors to hunt for eggs. But this particular year was extra special, because my mom and older sisters made matching dresses for us to wear!

Can you guess which girl am I in the picture? The tiny and absolutely adorable two-year-old, of course!!! Who could EVER resist those chubby widdle cheeks? More candy, please!
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Stay strong this week and know that I'm praying for you. I care about you, and our risen Lord cares about you too.

Happy Resurrection Day!

Bonjé Gioja

P.S. What's your favorite Easter memory? Anybody wanna share their ideas for how to make a stay-at-home holiday a little more special? And how do you still make holidays special for your family when your energy is low?