It's been a while since I've posted anything. Juggling college, a job, and a social life has made it hard to squeeze enough time in to sit down and write. But it's something I love, and I deserve to make time for myself to do it.
Blogger offers a feature where you can view how people found your blog posts. Now since most of my links are posted to my social media, the majority of my traffic comes from those websites (thanks for reading friends and family!) However, one of my posts is different. On my post regarding PLEVA (link here), I've noticed that lots of people have found my post by Googling things like "red bumps on leg" or simply just "PLEVA", and to me, that was really cool. Because in a way, I felt like my post was educating people. Maybe someone was trying find a diagnosis, or simply doing research on the disorder. Either way, it inspired me, so I decided to write another health post. This time about my heart.
Ever since I was little, I have always been the girl with the weird health issues. Cat scratch fever, highly allergic to only walnuts, you get the point. Off the wall. Add PLEVA to that list, and I thought that there couldn't possibly be anything else wrong with me. And then I got a diagnosis.
Abbreviated POTS, Postural Orthostatic Tachycardia Syndrome is a form of dysautonomia. The Dysautonomia International website describes it as, "a form of orthostatic intolerance that is associated with the presence of excessive tachycardia and many other symptoms upon standing." When I explain POTS to people, I describe it in simpler terms. Basically, my blood pools in my legs, making my body work extra hard to circulate blood throughout my body. And yes, this causes a lot more problems than you think it would. I'm going to copy and paste an excerpt from the Dysautonomia International website, and also list extra symptoms I suffer from.
"It is fairly common for POTS patients to have a drop in blood pressure upon standing, but some POTS patients have no change or even an increase in blood pressure upon standing.1 POTS patients often have hypovolemia (low blood volume) and high levels of plasma norepinephrine while standing, reflecting increased sympathetic nervous system activation. Approximately 50% of POTS patients have a small fiber neuropathy that impacts their sudomotor nerves. Many POTS patients also experience fatigue, headaches, lightheadedness, heart palpitations, exercise intolerance, nausea, diminished concentration, tremulousness (shaking), syncope (fainting), coldness or pain in the extremeties, chest pain and shortness of breath. Patients can develop a reddish purple color in the legs upon standing, believed to be caused by blood pooling or poor circulation." 
Significantly higher pulse than usual, and how I feel on days like that one.
To add to that, sensitivity to light, pain in joints and muscles, constantly feeling awake and wired (inability to fall asleep), inability to sweat, sensitivity to caffeine, sensitivity to heat (no hot baths, showers, or jacuzzis), and so on, and so on.
So in short, yeah, it kind of sucks.
The worst part about this is I never knew I had it. Number one, because we always just thought it was kind of normal that I passed out at random times. And number two, because nobody really knew about POTS.
So I went about my life having days where I just didn't feel like doing anything, where I would black out just from standing up, where I could feel my pulse in my temples, where I would have panic attacks and never know why, etc. And if it weren't for a completely humiliating day at school, I would still believe that all of these things I was feeling were just normal.
It was a normal morning in anatomy class my senior year of high school. First class of the day, I sat down in my seat and ate my breakfast as we watched a video on a surgical procedure (spinal tap I believe?) Knowing that I possess a pretty weak stomach, I opted out on watching the film, and instead laid my head down on the desk because I already wasn't feeling very good that day. For the people reading who have never passed out before, usually before I do, my ears begin to ring and I start losing my vision. This began to happen. I tapped my friend on the arm and told him to get the teacher because I felt like I was going to pass out. A moment later I woke up on the ground, my teacher above me and the entire class staring at me. And I. was. mortified. The nurse came in and wheeled me out of the classroom in a wheelchair, and I was told that I wasn't cleared to go back to school until I went and got an EKG. Though the EKG told us everything was fine, my mom was not convinced. (We have a running joke in our family that my mom thinks she has her PhD, and can diagnose anyone with anything, which she kind of can.)
So the research phase began. And she never really came across anything on the internet, instead our answers came from a personal experience.
One day I got a text from my mom that my god mother was in the hospital, and they weren't really sure why. My mom assured me that everything was fine and that she would keep me updated, as lots of tests were being ran. Long story short, my god mother learned that she had POTS, and she told my mom that she thinks I have it too.
And just like that, everything started to make sense. Well, kind of.
We still had a lot of questions. How did this come about? Why did I have it? What even really was this disorder? Is it genetic? The only way we would find answers to these questions was through a specialist, and we found on of the best ones in the house.
Dr. Thomas Ahern, a cardiologist based in Encinitas, California. Quoted from the Dysautonomia International: Medical Advisory Board, they write, "Dr. Ahern’s fascination with dysautonomia began in the 1990’s when he met a patient with Postural Orthostatic Tachycardia Syndrome who had already had two failed heart ablations. In 2009, he began to see an influx of patients with Dysautonomia. By 2012, Dr. Ahern’s office was seeing hundreds of patients with varying degrees of Dysautonomia." Ding, ding, ding! We found our doctor.
We made an appointment with Dr. Ahern. I say we, because it was a father-daughter visit, as my dad faces some of the same health struggles as I do. We entered his office with questions, and left with very solid answers.
We're sitting in our room, and in walks Dr. Ahern. Bright eyes and all smiles, he introduces himself to me, my dad, and my mom, and begins the interrogation. He started with my dad, asking standard questions, "how often do you pass out?","what happens when you do","do you experience brain fog" "do you suffer from light/sound sensitivity", etc. Then Dr. Ahern moved to me. I thought my dad had it tough, but Dr. Ahern was spouting all sorts of questions to me, some that I didn't think had anything to do with my heart. All in all, I'm thankful that he made the experience enjoyable, with lots of jokes and promises that the questions were almost done.
So the research phase began. And she never really came across anything on the internet, instead our answers came from a personal experience.
One day I got a text from my mom that my god mother was in the hospital, and they weren't really sure why. My mom assured me that everything was fine and that she would keep me updated, as lots of tests were being ran. Long story short, my god mother learned that she had POTS, and she told my mom that she thinks I have it too.
And just like that, everything started to make sense. Well, kind of.
We still had a lot of questions. How did this come about? Why did I have it? What even really was this disorder? Is it genetic? The only way we would find answers to these questions was through a specialist, and we found on of the best ones in the house.
Dr. Thomas Ahern, a cardiologist based in Encinitas, California. Quoted from the Dysautonomia International: Medical Advisory Board, they write, "Dr. Ahern’s fascination with dysautonomia began in the 1990’s when he met a patient with Postural Orthostatic Tachycardia Syndrome who had already had two failed heart ablations. In 2009, he began to see an influx of patients with Dysautonomia. By 2012, Dr. Ahern’s office was seeing hundreds of patients with varying degrees of Dysautonomia." Ding, ding, ding! We found our doctor.
We made an appointment with Dr. Ahern. I say we, because it was a father-daughter visit, as my dad faces some of the same health struggles as I do. We entered his office with questions, and left with very solid answers.
We're sitting in our room, and in walks Dr. Ahern. Bright eyes and all smiles, he introduces himself to me, my dad, and my mom, and begins the interrogation. He started with my dad, asking standard questions, "how often do you pass out?","what happens when you do","do you experience brain fog" "do you suffer from light/sound sensitivity", etc. Then Dr. Ahern moved to me. I thought my dad had it tough, but Dr. Ahern was spouting all sorts of questions to me, some that I didn't think had anything to do with my heart. All in all, I'm thankful that he made the experience enjoyable, with lots of jokes and promises that the questions were almost done.
He asked about anxiousness, to which I responded that I had. He asked about brain fog, about sensitivity to certain lighting, about my eating habits, and even about how bad of a hangover I get.
(Sorry family, but I am a college student.) Apparently my answers were correct, because he was very sure that I did indeed have POTS. With a diagnosis, I thought that was that, but it was only the beginning of my journey.
Lots of tests were to be done. Dr. Ahern asked that I completed a 24 hour urine sample, that I scheduled a tilt table test (to which I gulped at the sound of), and that I get blood work done (to which I gulped even harder). All of this sounded scary, and I didn't want to do it. I remember the drive home from the doctors office telling my mom that this "stupid thing" didn't even affect me, and that I saw no point in getting tests done. Most of my saying this was because of how much I hated getting blood drawn. Also, a urine sample didn't sound very charming. And a tilt table test? Well that just sounded like medieval torture. To this day I'm not sure what exactly changed my mind about everything, but I began my round of tests.
I survived the blood work, submitted my urine sample, and scheduled my tilt table test at Scripps in La Jolla. My dad had a tilt table test done before, so I went in kind of knowing what to expect. Basically, they lay you down on a table and strap you in, and you lay there for around ten minutes to bring your heart rate down. Then they slowly tilt the table up and record how your blood pressure and pulse changes, and how long it takes you to pass out. They are also supposed to hook you up to an IV, in case the test affects your body in a very wrong way, and they need to get fluid into you immediately. I happily declined the IV offer, and told the nurse I would take my chances.
The test was interesting. You'll see in the image below that my blood pressure got down to 75/51. For those who aren't aware what good/bad/high/low blood pressure is, that is pretty darn low. While my body was going into hypotension because of this (dizziness, faintness, blacking out), you can see my pulse was at 101. Pretty typical in a POTS patient. These things caused my body to pass out.
Photo on the top is me in the tilt table and my wonderful nurse, photo on the bottom is my heart rate and pulse after the table was tilted upward.
Dr. Ahern then came in the room and talked to me about the results. While most POTS patients actually do not pass out during the test, he was still sure that I had it.
The frustrating thing about all of this is that right now, there isn't a whole lot you can do to fix it. There are things you can do to help it, like eating a high sodium diet, drinking lots of water, wearing compression socks/pants (I own a pair of the pants and we as a family call them my "happy pants" because of how great they make me feel), and even trying to treat it with antihistamines. But as of right now, no cure for the disorder. And while I do my best to tough it out, there are days when I can feel the debilitating symptoms of it all. Going camping in Mammoth and participating in amazing hikes, only to pass out and hit your head halfway through, or being so exhausted afterwards that you aren't even able to enjoy it is hard. Having people ask me why I'm so skinny but sound out of shape is hard. And yes, not wanting to enjoy a couple of beers with friends because you know how you will feel in the morning is very, very hard. But I'm a strong girl, and I know I can do it.
So this is where the hope comes in. That maybe an aspiring cardiologist will come across this blog post and start doing research. Or start raising awareness. Or this post will simply help another POTS patient, giving them a little peak into my journey with the autoimmune disorder.
Your health is so important. If you aren't feeling good, don't write it off as just a bad day. If you're having reoccurring symptoms of something that don't seem normal, go to the doctor. Do research. Get a diagnosis. Medicine is becoming more and more advanced, nobody deserves to not be living to their fullest and healthiest potential.
If you have any questions, feel free to comment and ask! Would love to clear confusion or curiosity.
Here's some links to various pages on POTS/Dr. Ahern/auto immune disorders:
Thanks for taking the time to read this.
xoxo,
