During my visit at Mayo Clinic in April, 1 met with a nephrologist (kidney doctor) regarding my high blood pressure as it was a major concern on behalf of my specialists. I explained my history of head and neck trauma that I endured during childhood and throughout my late-teens as a power-tumbler and competitive cheerleader. Additionally, I mentioned that I had exhibited symptoms consistent with Dysautonomia since the first incident of head and neck trauma at age 7. However, I never received a proper diagnosis as I experience periods of both low and high blood pressure.

He started connecting the dots and went on to explain that there are 15 different forms of Dysautonomia, 3 of which are related to uncontrollable and volatile blood pressure. I was very much aware of Dysautonomia but had no idea about these other more rare forms. I was mind blown to say the least, but the "flare-up" episodes I had been experiencing started making sense as the reason why became increasingly clear.

Since childhood, I've experienced episodes of skin flushing, severe hyperhidrosis, debilitating migraines and violent vomiting that coincided with my postural position, physical exertion and additional factors and stimuli that affected my central nervous system. I had consulted with a number of specialists in attempt to figure out what these episodes were and why they were happening, but no one had any idea. Come to find out, my blood pressure was so high that I was having severe hypertensive crises. These episodes were deeply disabling and debilitating but for the first time in over 20 years, I could finally make sense of what was happening. This was a crucial missed aspect of my health as the episodes could (and still can) happen on a daily basis.

At that time, he ordered a repeat tilt table test and additional autonomic testing. Some of you may be wondering, "how could you not know your blood pressure was so high?" and the honest truth is— l've been sick for so long that I don't remember what it feels like to be "normal." After suffering from what is now considered to be a traumatic brain injury, I still excelled academically and athletically. There were no signs of cognitive impairment or neurological damage. However, the severity of my symptoms and the episodes gradually progressed over the years. During childhood, I could be active for 1-4 hours before the flare-up episodes were induced. 25 years later, it only takes about 20 minutes for the episodes to occur. This aspect alone has made it extremely difficult to live a normal life.

Instead of extending my visit to complete the autonomic testing at Mayo Clinic, I returned home to have them done by my local cardiologist. 12 years after referring me to Mayo Clinic's Dysautonomia Clinic, we were back right where we started. It was obviously frustrating as it was meant to be addressed in October of 2016. Nevertheless, my local cardiologist ordered a repeat tilt table test and a 24-hour holter monitor to track my blood pressure in 20-minute increments.

I had undergone multiple tilt table tests at this point, all of which were deemed inconsistent or inconclusive to determine a Dysautonomia diagnosis. Over a 6-week time period, I completed the ordered autonomic testing and the results were relayed back to my Mayo Clinic nephrologist. He made it clear the results were consistent with autonomic dysfunction but that it wasn't due to the more common forms of Dysautonomia. As a kidney specialist, he felt he was out of his depth and recommended I be seen by their Dysautonomia Clinic or an autonomic specialist.

Once again, I was right back where I started in 2014. Yes, we were able to rule out quite a bit time this around, but there was still more that needed to be done. Finally, I was closer than ever to finding out the underlying cause / diagnosis that was responsible for the flare-up episodes, as well as the cause of my severely fluctuating and volatile blood pressure. I was so frustrated that I decided I wasn't going to wait to return to Mayo Clinic in a few months to continue digging for answers, so my search for specialists who were capable of detecting and diagnosing the remaining rare forms of Dysautonomia began.

Luckily, it didn't take long to find Dr. Alexander Hajduczok, a cardiologist located at Oklahoma Heart Institute in Tulsa, Oklahoma. 4 days prior, he had released an interview with another physician regarding baroreflex sensitivity and/or failure, which is one of the rarer forms of Dysautonomia that still needed to be ruled out. I immediately contacted his office with a brief overview of my health, history with Dysautonomia and latest autonomic testing results. Not even an hour later, I received a call back from his nurse who said he not only agreed to meet with me, but that he'd be available to do so the following day. I genuinely couldn't believe it. To say I felt lucky and relieved would be an understatement.

So, my mom and I woke up early, left home by 7:00am and headed up to Tulsa. Upon entering the room, he kindly introduced himself and asked that I tell him about my health and what I was hoping he could help me with. I started as I always do by providing a brief overview of my diagnoses, health history and overall quality of life. As I was relaying relevant information, it dawned on me that not only was he not taking notes, he hadn't broken eye contact but a couple times. This was rare as most doctors simultaneously take notes and chart while listening closely. Little did I know, he used an Al program to dictate and summarize everything, allowing him to develop a more personal connection when working with his patients.

When I wrapped up everything that needed to be relayed, he did something no doctor has ever done before. He stood up and said, "first off, I just want to give you a hug." I cannot express how much this caught me off guard but in the best way possible. Meeting with a new specialist can be an incredibly anxious experience, especially when doing so without your already-existing team of specialists. Some have their own egos, different bedside manner and ways of treating patients—but this man was of a different breed. He was human, had empathy and wasn't afraid to show it. This is the kind of doctor everyone hopes to have, especially those with extensive diagnoses and complicated health histories.

While he understood my primary concern of our consultation and could have stopped there, he didn't. He made it clear that he wanted to dig deeper and assured both my mom and I that he'd do all he could to get me feeling better again. He immediately started ordering bloodwork, a lot of which I'd never been tested for. There was a slight difference in my blood pressure when tested on my right arm versus left arm. Because of this, he decided he wanted to start by getting a better look at my heart and how well it's pumping by performing a right heart catheterization.

A right heart catheterization is an invasive test that can show how well your heart is pumping. It measures blood pressure and oxygen in your lungs and the right side of your heart, specifically the right atrium, right ventricle and pulmonary artery. A thin, flexible tube called a catheter will be inserted into a blood vessel in my neck. The catheter will then be threaded through the right side of my heart into my pulmonary artery, the main artery that carries blood to your lungs.

While it sounds scary, Dr. Hajduczok isn't just a common cardiologist. He specializes in advanced heart failure and transplants. This is a routine test he's performed, taught and overseen on a normal basis. As if his education and knowledge wasn't impressive enough, I learned he was an instrumental part of the team who created "Whoop", a wearable device used to monitor a variety of general health and cardiac-related factors, allowing him to remote monitor his patients in real time. Athletes such as Patrick Mahone, Cristiano Ronaldo and Sha'Carri Richardson use the device to help optimize their health, fitness, and overall quality of life.

To think that this all started out by attempting to narrow down a Dysautonomia diagnosis is wild. Finding him was by pure chance. Had I not, I'd still be waiting to meet with autonomic specialists at Mayo Clinic or UT Southwestern. But that's the thing about patients with complicated health histories and diagnoses that go undetected and misdiagnosed for so long— once we feel close to getting answers, it's hard to wait or let it go. After 12 years, I was done waiting. So I took a chance that turned out to become something far more than what I was expecting or could have hoped for. With the exception of my rheumatologist, I've never been more reassured and understood by a specialist upon meeting them. I'm incredibly lucky to have found him and have so much hope that I'm finally on the road to getting more answers, a proper Dysautonomia diagnosis and the overall goal of improving my quality of life.

I want to take this time to thank everyone who reached out with well wishes going into my last tilt table test. It was a wild experience that I plan to share very soon. In the meantime, I'll be undergoing more autonomic, cardiac and pulmonary testing that I'Il share once completed and concluded. I've attached the results from my 24-hour holter monitor test showing just how severely my blood pressure fluctuates on a normal daily basis. I hope by doing so, other patients can relate and understand that this kind of fluctuation is in no way shape or form normal, even if the overall results conclude the medium range to be within normal levels. Dysautonomia comes in many forms and identifying them can be a long and difficult progress. But when it comes to learning how and why your body functions the way it does with any chance of feeling better, it's beyond worth taking the time to do so.