What was your journey to getting a diagnosis like?

When I was about 15 years old I had begun to have what I describe as “episodes”. For some reason things like standing for long periods of time, sitting to standing, and resting after running a couple laps in gym class became increasingly difficult for me. My feet were always tinted a deep red, sometimes purple, and I would have moments where I would suddenly get incredibly dizzy and feel faint. My entire body would feel weak, as if I was a feather someone could blow over. My mother and I had visited a couple doctors in the area , some who I believe questioned my actual problem and thought I was making up my symptoms. My family doctor diagnosed me with hyperglycemia initially, but recommended me to go visit a cardiologist. I took his word and just believed that with the proper amount of water intake I would be able to manage my symptoms and grow out of it.

As school progressed and I had entered my senior year of high school my symptoms had gotten worse. It was so difficult for me to get out of bed in the morning, not just because of the lack of energy I had, but because I was in physical pain. It felt like my chest was being pressed down by some invisible force. While my cardiologist later told me this had nothing to do with my POTS, I have had it for the past 3-4 years, so something tells me it cannot be a coincidence…but anyways, I had finally visited my cardiologist, a wonderful woman who works at Deborah Heart and Lung Center in New Jersey. She did not know what it was at first, and before I went on my way she noticed my feet in my pair of ballet flats. She said “Actually, I think I know what you have”. She explained to my mother and I what POTS was, and asked me to come in for a tilt table test. After my test, the rest was history and I was officially diagnosed with Postural Orthostatic Tachycardia Syndrome. I’m proud to say that I have lived with this for 5 years now, and it has made me a stronger woman than I was when I was younger.

 

What is your biggest struggle with Dysautonomia?

I have had many struggles along the way. The first was explaining to my friends and teachers what I actually had and how to react if I were to have an episode. When I was in high school it was extremely difficult for me to get up in the morning feeling fatigue and in pain, I was intolerant to exercise so I did not push myself like other peers and I grew self-conscious about my condition after an event with school where a class trip was almost canceled because there was no school nurse to accompany the trip for me my teacher had told me. I was furious because I felt like I was in control of my symptoms once I had started my medication.  I also had trouble coping with new symptoms as my POTS developed, including temporary loss of my vision and physically getting sick because of an episode.

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Is there a Dysautonomia success story you would like to share?

While I still have POTS, I think I have progressed enormously the past year. When I began college in the Fall of 2010 I had struggled maintaining my weight with lack of exercise, but luckily I was able to stay within my normal range. When it hit the end of 2011 my episodes were less frequent to maybe about once a month, and I believed that it was time for me to get serious about weight loss. I was not terribly over weight, but I felt like I deserved to feel confident in my own skin. I began to visit the gym every morning and do 30 minutes of cardio, something that was not too difficult with the medication. As my body got more in shape I made a daring move- I do not advise anyone do this without consulting their doctor first- I stopped taking my medication. I did not want to be dependent on my medication and I gradually became more and more in shape. When I started to feel ‘better’ I contacted my cardiologist and had a long conversation with her and she gave me the green light. I had not had an episode in about 3 months at that point. I have been able to manage my POTS symptoms for almost 8 months now without my medicine with the exception of about 2-3 episode.  I completely contribute my success to exercise.
I have been very blessed to have a mild case of POTS compared to some of the people I have been able to network with over the past couple of years. I realize how severely debilitating it is for many people, and I am grateful that they diagnosed me earlier than my POTS friends.

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What are your top three treatments that help you function daily?

I used to take Fludrocortisone twice a day, but now because I am less intolerant to exercise, I make sure to stay hydrated and carry a water bottle with me wherever I go. This has been a tremendous step to helping me maintain my symptoms. I also make sure I eat something, even on days where I feel too tired to get up in the morning. I also monitor my heart rate whenever I unfortunately do have an episode, I record it and then I think of what I did not do that day to manage my POTS.

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Who has inspired you most on your journey? Why?​

A woman named Shae Christine Elaine Leighland-Pierce has been the biggest inspiration on my journey. When I was first diagnosed I sought out more information about POTS on the internet. I came across her blog and followed her. She told me about a Facebook POTS support group she was in, and the group was very helpful to me when I was first learning about POTS, and whenever I was having a bad day with episodes or my symptoms. She is an incredible woman who I believe has faced her storm with strength, and she offers advice to all who ask for it. She is also very creative and makes jewelry and I think she is a great role model for POTS patients. Shae is definitely my inspiration.

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What would you like to say to the public at large about your situation and Dysautonomia?

I always tell people to do their research. Even though I have had POTS for 5 years, I still find it difficult to explain what Dysautonomia is because every patient is different. We are not all the same. I would also encourage the public to keep an open mind and be understanding. Dysautonomia is not something you can see happening to a patient. It is an inner struggle that we battle with by ourselves, so please don’t tell a person who is suffering from an episode that they are overreacting, faking it, or that they’ll be fine. It was very hard for me when someone did not understand the pain I would experience just because they could not see it. Just because you cannot see it does not mean that you cannot believe it exists.

What advice would you give to a newly diagnosed patient?

To new patients: Do your research so you understand what Dysautonomia is. I encourage you to reach out to support groups, such as the ones on Facebook. You would be surprised how many of us there are out there who love to encourage, support and be supported by this large community of people.  Do not be ashamed of your condition, and do not let it consume you. Yes, it is hard, but I like to believe that we are strong and we were given this life for a reason. You have dysautonomia, but it does not have you. Dysautonomia should not define who you are as a person and it should encourage you to be strong and keep hope and faith that better days will come. You are not alone.