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

Did you miss the beginning of my diagnosis story? No worries! 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

After receiving no answers from my doctors, I grew tired of feeling sick and useless at my parents' farm. I longed to get out of the house and return to school. I missed my brother (who was also a student at my school). I missed my friends and my boyfriend terribly. And I still stubbornly refused to abandon hope of passing my first semester of college classes. So after being absent from school for more than a month, I finally returned in time for the last two weeks of the semester.

I honestly had no game plan for managing my health at school. My seizures still occurred multiple times each day. But at least the feeling of conscious paralysis had become a bit less frightening to me. Somehow during my time at home, I had learned to relax and just wait out each seizure instead of panicking. Avoiding panic during a seizure also seemed to reduce the chance of triggering a subsequent chain of seizures which would last for hours. This slight improvement wasn't much to go on, but it did give me hope that I could somehow learn to survive with my seizures at school.

My boyfriend Josh and I had stayed in touch during my absence. Ironically, my illness actually strengthened our relationship instead of destroying it. In the face of crisis, our brand-new flirty romance had transformed overnight into an iron-clad confidence. So when my parents dropped me off back at school, I made them do the whole awkward say-hi-to-the-new-boyfriend thing. My parents were not enthused about my choice to continue dating while dealing with my sickness. But they remained civil and kind, and I finally introduced Josh to the people who had raised me.

After my parents left, fatigue quickly hit and I retired to my dorm room. After I spent some time curled up in my bed, a few girls whom I had grown to love dearly came to hug me and to say hello. I updated them on all my crazy medical adventures, and then I shared my frustration at not finding any answers. I felt a huge relief to finally be able to talk through my struggles with my peers. (Don't get me wrong... my parents are awesome. But they also aren't exactly the most emotional human beings in the world.) My friends' overwhelming love and support blessed me so much. Since my health was still so uncertain and they could tell I was struggling emotionally, my friends arranged to take turns sleeping in my room every night. I didn't want to accept their help, but they insisted. And I found that it actually was a huge comfort to have someone else in my room with me during those sleepless nights of uncertainty.

Within the next day or two, I quickly realized that I could not handle eating in the school dining hall. The noise of all the students and professors chattering at their tables invariably sent me spiraling into a chain of seizures. So instead, my sweet friends worked out a system to deliver meals to my room. My boyfriend packed my meals each day, wrote a cute note inside the Styrofoam box, and then passed it to a girl who could carry it to my room (boys weren't allowed near the girls' dorms). If I was sleeping, the girl slipped into my room, placed the food in my fridge, and quietly slipped out again. And if I was awake, the girl would usually stay just long enough to give me a hug and whisper a prayer before heading out to catch her next class.

I ventured out of my room only to attend class and chapel. I was too weak and shaky to carry my own backpack to class, so my boyfriend shouldered both his bag and mine. And although I previously had been a front-row-only kind of student, I now sat in the back so that my seizures wouldn't distract my classmates. One of my girl friends always sat next to me so that I could lean my head on her shoulder during any seizures that came (my boyfriend sat on my other side, but leaning on his shoulder constituted against-the-rules PDA). And I always crawled straight back into bed to rest between classes and then again after my classes were done for the day.

Fatigue became my worst enemy during that time. I survived only by taking at least four or five naps every day. And even when I was awake, I limited my movements so I could conserve every possible ounce of energy. Every waking moment, I struggled to stay present in my surroundings and to ignore my body screaming at me to crawl back into bed.

I found that I was able to do homework in the evenings as long as I stayed in my bed instead of sitting at my desk. However, I quickly grew frustrated because I had fallen so far behind in my classes. But one of my friends was a freshman who shared almost all of my classes, so she quickly became my study buddy. Day after day, she knocked on my door and then we laughed and cried and munched on snacks as we dealt with the homework monster. Having another person to study with gave me the strength I needed in order to fight my fatigue and to stay awake long enough to make a bit of progress in my classes each day.

There still remained more homework than I could finish before the end of the semester. So it was a huge relief when the academic dean called me into her office and offered me an "incomplete" grade in all of my classes. This meant that I could finish all my missed homework and exams over Christmas break. The dean also dismissed all of my absences from my time at home so that my grades would not be penalized. I will forever be thankful for the grace and kindness that the dean showed me that day. Without her help, I probably would have failed most of my classes.

I still had to visit each of my professors' offices to obtain their signatures on my incomplete forms. Since I had a full load of classes, I had seven professors. I hated the thought of explaining my utter failure and asking for grace seven different times. But I spread my meetings out over a few days, and eventually spoke with each professor. The dean had contacted them first, which helped tremendously. All my professors were kind to me and gave me the extensions that I needed.

But one professor didn't just want to hear about my homework. He assured me that of course he would help me get a good grade in his class. But then he asked, "How are you doing? What you're dealing with sounds really hard. Can I pray for you?" This professor's kindness touched me so much that I broke down crying right there in his office. He then listened patiently for the next thirty minutes or so as I vented about the devastating effects of my illness and how much I hated the uncertainty of not having answers. Before I left my professor's office, he prayed for me. I will never forget the kindness that my professor showed me that day. I honestly don't know if he remembers our meeting or not, but his encouragement that day made a huge difference in my life.

Other classmates encouraged me in little ways as well. My favorite was when a sweet group of girls burst into my room one day with a get-well-soon card, a huge bag of Reese's peanut butter cups, and a cuddly stuffed cow. I quickly devoured the candy, but I still have that big fat stuffed cow sitting on my bed next to me even as I write this blog post.

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This blog post has held mixed feelings for me. I'm honestly quite stressed this week because midterm exams are imminent, and so I did consider ignoring my blog for a week. But I am so glad that I took the time to write this blog post today (okay, let's be real; it actually took a few days), because these memories of kindness have blessed me all over again. I have absolutely loved revisiting these special moments in my life when people showed kindness to me even though I felt utterly broken and worthless. I have always been and always will be a feisty girl with an independent spirit who absolutely hates accepting help. But two years ago, when my life was falling apart and I had no other choice, I was blessed beyond belief by the help that I received. I honestly wouldn't have been able to survive that portion of my life without the patient love and support of my friends.

Today, if you are reading my story, I have a challenge for you: Don't stay silent. People are hurting all around you. I beg you, take the time to find these people and encourage them this week. Some people struggle with physical issues like I do, while others are battling a whole different brand of demons. But maybe, just maybe, your encouragement could help ease their struggle a little bit. Just say hi and tell them you care. (Too shy? Write them an anonymous letter!) If you can, ask them what they need and then offer your help. It might be as simple as giving them a hug. Or, it might be as big as picking up groceries for them and then babysitting their kids for the day. Maybe you could even buy them a big fat stuffed cow. Whatever they need, do it. I promise you, one simple act of kindness can make a whole world of difference to someone whose life is falling apart at the seams.
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Continue reading my diagnosis story here:
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
Finally, An Answer: My POTS Diagnosis Story, Part Seven

Stay strong this week. Midterms will be over soon. I'm praying for you!

Bonjé Gioja

P.S. What's one of the best ways someone has ever encouraged you? Do you have any suggestions for me when I want to encourage others but also struggle with my own fatigue at the same time? I'd love to hear your thoughts in the comments below.

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

Missed the first part of my POTS diagnosis story? Catch up here:
I Promise I'm Not On Drugs: My POTS Diagnosis Story, Part One

My seizures took over my life. 

I couldn't talk to my friends, couldn't attend class, couldn't go to the cafeteria without triggering a series of conscious-but-paralyzed seizures which took me hours to recover from. I was constantly weak and shaky and absolutely terrified of the next seizure which I knew was inevitable. I became disabled to the point that sitting up in my own bed was a bad idea. I postponed trips from my dorm room to the bathroom as long as I possibly could, afraid that I would hit the floor before reaching the end of the hallway. 

Then a day came when I felt somewhat better. The whole day had passed without any seizures. I felt as though I had been a prisoner in my own bed for ages, and I was dying to go for a short walk outside with my boyfriend Josh. So for the first time since everything started falling apart, we spent quality time together. We talked a lot and laughed a bit and I probably cried a ton. I asked Josh if he even still wanted to date me, since the version of me that he chose to date three weeks earlier had been a normal, healthy girl. He hadn't signed up to care for this new girl with a mysterious, debilitating illness. But Josh assured me that even if my doctors discovered a fatal disease within my body, he wasn't planning to walk away from me. Every word my boyfriend spoke that night gave me butterflies. Even though I dared not speak the words, I felt myself falling in love just a tiny bit. 

When we returned to campus, I was a bit fatigued. I should have returned to my room, but I missed spending time with my friends. So my boyfriend and I decided to hang out in the campus coffee shop for a short while before bed. But of course, after a few minutes I found myself sinking into a seizure. My boyfriend was not overly alarmed; we had both started to grow accustomed to my strange seizures. He discreetly touched my hand a bit to offer comfort (students of opposite sex were not allowed to hold hands on campus) and waited for me to wake up. After a few minutes, I sat up and continued joking around with my friends. But then I succumbed to another seizure, and then another, and another. I eventually lost the ability to sit up between seizures, being too quickly dragged into the next one. My boyfriend grew anxious and decided to text my brother (who was a Resident Assistant on campus) for help.

By the time my brother reached the coffee shop, my seizures had grown longer and more intense. My friends could no longer rouse me for more than a few seconds between each seizure.

I started panicking when I realized that the seizures were growing worse than ever before. Will I ever wake up again? The thought crossed my mind that I could sink into a coma that night and never be able to move or speak again. Why is this happening? What's wrong with me? Why, God, why? I kept panicking more and more until I forgot how to breathe, forgot how to think, forgot how to do anything.

At this point, my memories from that night turn into a hazy soup mixed with a few intense moments which will forever be seared into my brain. I don't remember exactly what happened, but I do remember how I felt.

Weak. I know for sure that I felt weak. And helpless. More helpless than I ever thought possible.

Paralyzed. As my brother lifted me from the couch into a wheelchair, I felt the fullness of my body's limpness. My hands were rocks weighing my arms toward the ground. My legs had been reduced to noodles filled with sand. I tried to curl up into my brother's arms as he lifted me, but the dead weight of my body simply wouldn't listen.

Hands. Hands kept me from slipping to the floor, kept my head safe.

Confusion. Where was I? I opened my eyes as the seizure passed. I was in the old freight elevator, the only way to reach my room in a wheelchair. Wow, there's a lot of people here. 

"Hi, guys." I sheepishly grinned at all the concerned faces. "Don't worry, I'm fine."

Not again. Another seizure. Why won't they stop? What's wrong with me? Am I dying? I just want this to stop. I just want to be normal.

"Bonjé, can you hear me? Can you see me? Hey, there you are! What did you do tonight? Josh is pretty cute, isn't he?" Everyone kept asking me questions, kept trying to prompt words from my lips. Kept trying to keep me responsive. "Can you relax your hand?"

My hand. Something's wrong with my hand. "I can't move my hand." I looked up at my brother with terror in my eyes. My hand was frozen; my fingers formed a grotesque claw. This is the weirdest feeling in the world. I stared at my hand. I kept telling it to move, to soften, but the message from my brain lost its path within my body.

Then I began to notice that my legs weren't listening either. My knees bobbed up and down more fervently than I had ever thought possible. I couldn't stop the shaking; all I could do was watch as my body fell apart. At least the seizures had stopped for a time. Leaving the coffee shop must have helped. I was able to smile sheepishly again at the faces around me. Able to laugh when they prodded me about my romantic walk with Josh. I was still paralyzed, but at least I could breathe normally.

My brother lifted me from the wheelchair to my bed.

Exhausted. I honestly don't know if I slipped into more seizures, or immediately slipped into blissful sleep.

When I woke, control of my body had returned. My legs were my own again. My hand held only a nagging pain which faded shortly.

Only one wound remained:

Within my mind, I held the terror of an unknown illness that was swiftly destroying my life.
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Continue reading my POTS diagnosis story here:
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
Finally, An Answer: My POTS Diagnosis Story, Part Seven

Until next week: stay strong, keep warm, and appreciate the capabilities that God has given you this day.
I'm praying for you.

Bonjé Gioja

P.S. What's the most terrifying thing that ever happened to your body? Have you ever felt utterly helpless like I did? Was it hard for you to accept help from others? Leave a comment down below!

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