pots: an outline

If I were to rank all of my illnesses from most to least inconvenient (based off of my experiences) POTS would be at the top of the list. It’s debilitating in a way that most people can’t grasp. A lot of the time, I can’t comprehend it, either. But, I’m going to try to explain what it’s been like for me to live with this syndrome the best that I can. The journey has been long, and it’s not even close to being over. People affected by POTS and specialists both agree that there is a long way to go in terms of understanding and awareness. So, what is this awful medical condition? Why is it so widely misunderstood? Let’s start at the beginning.

POTS stands for postural orthostatic tachycardia syndrome. “Postural orthostatic” means changing with upright posture. Tachycardia is increased heart rate. So, every time I sit/stand up, my pulse skyrockets. Whenever I’m upright, I feel like my heart is going to beat out of my chest. This is believed to be caused by a number of things, such as low blood volume, blood pressure abnormalities, or nerve problems. The onset of POTS often occurs after a bad viral infection, like the flu or Epstein Barr (I had both).

The symptoms, however, branch far beyond tachycardia. Most, but not all, POTS symptoms include:

-dizziness

-lightheadedness

-fatigue

-palpitations

-weakness

-temporary vision loss/visual disturbances

-insomnia, hypersomnia, and other sleep problems

-vertigo

-body pain

-brain fog (including short term memory loss)

-syncope (fainting)

-presyncope (coming close to fainting)

-loss of appetite

-headache

-migraine

-numbness

-tremors

-shortness of breath

-exercise intolerance

-severe reactions to temperature changes

-severe reactions to food

-chronic nausea

-stomach pain

-vomiting, diarrhea

-dehydration

-GERD

-blood pooling

-poor circulation

-chest pain

-body aches (especially in the back and neck)

-anxiety (Yes, as a symptom! Although many people believe that the above listed symptoms are solely psychosomatic, they are truly caused by autonomic issues.)

-other symptoms related to lack of adequate blood flow to the brain (cerebral hypoperfusion)

POTS is a form of dysautonomia, meaning it’s a malfunction of the body’s autonomic/automatic functions. The things that the body are supposed to do on its own, like regulate blood flow and digest food, don’t work correctly in patients with dysautonomia. Although dysautonomia, namely POTS, isn't at all rare, there is a huge lack of awareness. Both the general public and medical community are widely misinformed about it. Because the more common symptoms can mimic symptoms that occur with anxiety, “potsies" are often misdiagnosed. And, I’m just going to say what everybody suffering from invisible illnesses is thinking; when doctors don’t want to admit that they’re wrong, they blame the patient’s state of mind. Sometimes, doctors even flat out accuse patients of faking. This isn’t only dangerous to a patient’s wellbeing, but traumatizing as well.

This inexcusable behavior is particularly damaging to people with POTS, as anxiety is both 1) a manifestation of what’s happening to their body 2) a normal reaction for anyone who’s feeling unwell. What people don’t understand that, in these cases, anxiety isn’t the cause. It’s an effect. In the words of Dr. Jeffrey Boris, a cardiologist from CHOP specializing in POTS:

“These patients do have better things to do. They’re not making it up, it’s not in their head. You know, a lot of times, patients are told, ‘you’re just anxious.’ But you know what? It’s hard to fake these symptoms, it’s hard to fake these findings. Yes, there can be comorbid psychiatric disease. But, if you were having acute onset of dizziness, or palpitations, or severe migraines showing up at any old time, unbidden, unexpected, with your buddies or taking a test, you’d kind of get anxious, too.”

-Dr. Jeffrey Boris

Another reason us people with POTS are believed not to be as sick as we say we are is because our illnesses are invisible. We look perfectly healthy a lot of the time… that is, until you take a closer look. Upon opening one’s eyes and mind, it’s clear that there’s a real problem with our health.

For some people, POTS comes and goes. A lot of teenagers outgrow it by their 20s, for example. However, for some, it doesn’t get better, or they have to live with it for a very long time. There’s no easy treatment or straightforward cure. Even to the experts, this syndrome is mysterious. The fact is, it’s confusing and debilitating. It’s impossible not to feel helpless because of it once in awhile. That’s part of why awareness is so important. If it’s going to continue to be a medical conundrum, it should at least be a well known conundrum.

My personal experience with POTS has been pretty downhill. I remember starting to experience odd, unexplained symptoms as a little kid that I’m now able to chalk up to it. It started with dizziness and headaches very early on, which more or less resolved themselves temporarily. But, after testing positive for Epstein Barr in 7th grade and having the flu twice in 8th, things declined rapidly. I experienced syncope from this illness for the first time in spring of 2015. After that first episode, the symptoms have stacked up. As of right now, I’m passing out and experiencing non-epileptic seizures multiple times daily. I’ve had to give up the abilities to enjoy food, think clearly, physically attend school, and more. I use a wheelchair some of the time now as well, since standing upright and walking around takes such a toll on my body.

POTS is known to coincide with many other health issues as well, such as Ehlers Danlos, type one diabetes, MS, and many other diseases. It has been considered that POTS is a mainly autoimmune illness, since it comes hand in hand with other disorders of that sort. Right now, it’s almost too complex to tell. There are similarities in every case, but the affects on individuals differs greatly.

This illness is different for everyone. My story might be completely different from that of someone else with POTS. But, at the end of the day, we all know the same pain. Even the most minor cases are exhausting to live with. The simplest tasks, like going to school, working, running errands, or even standing, become the most difficult things to achieve. If I can talk on the phone with a friend, study for awhile, or go to the store, I’m having a good day. Everything is a push, and there’s an obstacle to get around with every step I take. Not being taken seriously by strangers, “friends,” and doctors, doesn’t make getting by any easier.

My loved ones often feel like they’re grasping at straws while trying to make me feel better. Right now, you, the person reading this, can help. All you have to do is listen. Pay attention to people with invisible illnesses like POTS. It’s a hard illness to comprehend, but all I ask for is that you try. This challenge is real, and it can’t be faced in the way it should be if you’re skeptic of its validity. Paying close attention to what seems invisible can help change the way the world looks at POTS.

#POTS #dysautonomia #anxiety #cerebralhypoperfusion #invisibleillness #brainfog #cognitivedysfunction #headache #migraines #sensitive