My name is Morgan Boykin. I am 23 years old from Thonotosassa, FL. I come from an agriculture family that produces beef cattle. I have remained very active within the agriculture industry and am currently working within the industry. I live a southern lifestyle and have a passion for the outdoors. I love hunting, fishing, and spending time on the boat. Something most people find hard to believe is although I am a country girl at heart, I am also a pageant girl. I have now competed at Miss Florida 3 times and have held the titles of Miss Tampa, Miss Osceola, and am currently the 2018 Miss Winter Haven. I have been a VERY competitive national champion baton twirler since the age of 7 and have competed all over the country. I also was the feature twirler for the University of South Florida from 2016-2018.
Your POTS diagnosis story
My POTS journey began in 2016 when I began vomiting for 28 days straight. I was in and out of the hospital, had multiple GI testing done all to be told it was most likely a flu and to give it time. We noticed in the hospital my heart rate would spike when I would have these “episodes”. When we would ask why, doctors and nurses would give us the excuse of “thats what happens when you vomit.” Weeks later I ended up going to the cardiologist who put me on a 2 day heart monitor. He told me my heart rate was in the 200’s with my sleeping, put me on midodrine and a beta blocker, and said my blood pressure was dropping causing me to feel the way I was and have the symptoms I had. Within 3 days of being on the meds, I completely stopped vomiting. At the time I began working out EXTENSIVELY like I never have before. I was in the gym 4 days a week and twirling 16 hours on top of that. I was in the best shape of my life. Competed in the Miss FL pageant and took 9 days off from the gym. My first day back I passed out for the first time. Within 4 days I was passing out over 30x a day. Anytime I would have ANY posture change, fixing blankets, standing, sitting up, anything I would pass out. I ended up being transferred to another hospital due to doctors not knowing what was going on. I spent a total of 5 weeks in the hospital completely bed ridden. My mother had mentioned POTS after googling, and the doctor told her “thats really rare, it cant be that” trusting a doctors judgement we went to the next thing. All my test kept coming back negative. I then did a tilt table test. My heart rate went from 59 bmp to 173 bmp within 7 seconds causing me to pass out. Again my mom mentioned pots because of all the findings online, doctors still did not want to believe it was POTS. My mom got in contact with The Dysautonomia Project who came up to the hospital THAT night. Brought books, educational resources, and support to help get me a diagnosis. My doctors got in contact with POTS specialist who confirmed the POTS diagnosis and I was then discharged. I spent 6 months in a wheelchair unable to stand or walk because of my heart rate. September 2016, by the grace of GOD, a cancellation was made and Dr. Barboi was able to see me almost 8 months sooner. Dr. Barboi had played a tremendous role in getting my health under control and stable.
How has POTS impacted your life?
POTS has impacted my life tremendously and has caused major life changes. I had to quit my job, take a break from school, change my twirling life, and learn I cant live like I used to. My health is now my number 1 concern. I have lost a lot of friends because of POTS. People don't understand my health now and don’t always see me as “sick”. I often times have to cancel, reschedule last minute, or ignore a text because im too sick. I am no longer able to twirl like I used to. So instead I use my talents to teach. I don’t drive as of right now so that is a big lifestyle change that has impacted me. Being 23 years old and becoming dependent when you lived a life on independence is a hard thing to adjust to.
What are your main symptoms?
My main symptoms change quite often. My biggest complaint is always tachycardia and GI issues. My body struggles with digestion and I have had to learn how to work with my body in that manner. I struggle with insomnia, brain fog, numbness and tingling, and fatigue.
Do you feel you're getting the medical care you need?
I do feel I am getting the medical care I need. I am very blessed with the support system I have. My mother is my biggest advocate. She has helped me get into all the doctors I need and help me have the resources I have. The Dysautonomia Project and Dr. Barboi are my reasons for being where I am today. They have stood by me and helped me learn the life of POTS. Also learning my body has helped me tremendously when it comes to daily life.
Do you have any other chronic illnesses? If so, what are they?
Along with POTS I also have EDS (Ehler's Danlos Syndrome) and MCS.
Are you able to work/go to school? What are your hobbies?
It has taken a lot of time to get back on my feet with POTS. My sister and I opened an online boutique called The Southern B Boutique, to allow me to work from home while living with my health. It has been a blessing for my health to lay in bed and be able to do all the work that n needs to be done. I am slowly getting back into school and working my way towards graduating with my degree in Agriculture Communications. I have a huge passion for the agriculture industry and spend a lot of time involving myself in the industry. I have learned to still enjoy the hobbies I loved prior to POTS but with moderation. I love being outdoors! Horseback riding, fishing, hunting, baking, playing around with makeup, and just spending quality time with my friends and family are some of my favorite hobbies.
What's the most effective treatment you've tried and why?
The most effective treatment I have tried has been a combination of my medications along with IV saline. IV saline infusions have been a huge help in getting me feeling my new “best”. After working with my doctor and trialing many meds, we got me down to two medications, corlanor, and midodrine, and they have worked very well with my body. One of the biggest “treatments” is simply listening to my body. Sounds so silly and basic but its SO important. I know now what my body can handle and how to respond. Being able to modify things and know when enough is enough has truly helped me in progressing with POTS.
What have you accomplished since getting diagnosed?
Since being diagnosed I have tried to not let POTS define me. As hard as that may be some days I have been SO determined to keep my goals on the focus point. Prior to POTS, I was very active in pageantry. I was the 2016 Miss Tampa when I was diagnosed with POTS. I love pageantry and love the confidence and poise it brings me. After being diagnosed I wanted to be able to gain that back. I was blessed to serve as the 2017 Miss Osceola and now the 2018 Miss Winter Haven since being diagnosed. All three titles are a qualifier for the Miss Florida pageant and I was honored to place in the Top 10 last month. It was such an uplifting moment to tell my body Im doing this for me! Another accomplishment is opening up the Southern B Boutique with my sister. It was taken off and is doing so well. It is something we had always talked about but were to nervous to go for. Now that we have, its become such a blessing!
What piece of advice would you give to encourage others with POTS?
This is my favorite question… A piece of advice I would give to someone with POTS is to focus on the good! Its so hard to get wrapped up in medical appointments, sick days, and all the negative that comes with POTS. Everyone has bad days, whether they are sick like us or not. Our bad days are just harder on our bodies. When you have the good days, appreciate them. Think twice about standing in front of the sink brushing your teeth because there might be someone who has to brush their teeth in a bowl in bed. When you're vertical and walking to the car, think about those steps and how important that moment is, because there is someone out there using a wheelchair. Think twice about the little things and find beauty in them. Also, a big one for me, learn to live the life you want WITH POTS, not the life POTS wants you to live. If you want to go on a bike ride, wait for a good day and ride that bike but do it in moderation. If you want to get back to the kitchen to bake, do so, but sit down while doing it. If you want to do pageants like me, do pageants. Take the breaks you need and walk in heels that give you the balance you need! Learn to live life the way you want it!
What would you tell others who don't have POTS to help them better understand your condition?
Something I would tell someone that doesn’t have POTS is listen and be thoughtful. You NEVER know what someones going through physically AND especially emotionally. The emotions on a roller coaster like POTS can be the hardest part for some. Be a friend. Listen. Take the time to ask what they need. It’s the littlest things that make a difference. It’s the text messages that say ‘ Hey, do you just want to hang out and watch movies on the couch rather than go to the beach? It’ll be way to hot.” If you have a question or don't understand, ask! I love when people ask questions rather than just make assumptions.
Why is it important to spread awareness of POTS & dysautonomia?
I have always said since I was in the hospital being diagnosed, I just want to use my story even if it only changes one person life or helps them get diagnosed. Awareness is HUGE. I have been so blessed to speak at many different Dysauotnomia education seminars with the Dysautonomia project, be featured on the news, have huge responses on social media just because of sharing my story. You never know who will come across your journey and relate to it. Im constantly getting messages from complete strangers needing help, answers, or just someone that can relate! It’s so important that we spread the education about POTS and Dysautonomia to help the ones that are in the dark place we once were in. The more awareness, the more help patients will get!
Thank you for sharing your story, Morgan! You have already inspired so many people. Stay strong and keep fighting!