Information & Advice for Arrhythmia Patients

Suzanne's Story

Imagine that when you stand up, your heart rate soars above 150, your blood pressure drops, and you pass out.

Imagine that your digestive system malfunctions to a point that you can’t eat or digest any food without throwing up.

Imagine that you have horrible dizziness and imbalance for no apparent reason… your body has no control over it’s cooling system so you are constantly overheating and you have such severe anxiety you wonder how you are going to make it through the day.

Well this is what happened to me four years ago. I had my life turn completely upside down by a rare disease called P.O.T.S. (Postural Orthostatic Tachycardia Syndrome) caused by dysautonomia, a malfunction of the nervous system. It’s so frustrating, there is nothing wrong with my heart, there is nothing wrong with my stomach, there is nothing wrong with my body temperature or my equilibrium… it’s just how my nervous system malfunctions and it can’t regulate these normal body functions.

At fifty-six years old, I spend the majority of my life working morning, noon and night; however, four years ago, that all came to a screeching halt. I remember waking up in the middle of the night and having such severe dizziness that I couldn’t get my bearings. Over the next couple of months, I had an onset of strange symptoms, pounding heart rate when I stood up. I was exhausted all the time. I couldn’t even climb a set of stairs without being out of breath. I had horrible stomach problems and was so severely dehydrated from my body overheating, I was drinking almost a case of water a day and carrying around a face fan and a bag of ice because I was always burning up.

I went to countless doctors who had a hard time determining the cause of my symptoms. I became so incapacitated that I left my Los Angeles residence and moved back to South Jersey where my family resided. I spent my summer bed-ridden and used the time to research the illness and at times I began to feel hopeless about my condition.

One day, my heart rate became so high, I was rushed to the emergency room. I was referred to a local semi-retired cardiologist who had a small practice and during my consultation he looked at me and said, “You have P.O.T.S.” 

It was the first time that I had ever heard the term. I finally began to feel some kind of relief — at least this illness had a name. My solution-oriented character said to myself: “No worries. I’ll just get into the infamous Mayo clinic and I’m sure that there will be some sort of treatment that they could offer."

To my surprise, the wait to schedule an intake appointment would take over a year and a half. Although many people aren’t familiar with P.O.T.S., there are an estimated one to three million Americans who live with the disease but because of lack of awareness, most patients experience a four-year diagnostic delay. Thankfully, I was able to be placed under the care of an amazing cardiologists who offered hope. 

I found that not only was there no known cure, or FDA approved drugs to treat P.O.T.S., but there was also no known treatment, only experimentation of several different off-label medications to manage the symptoms. Most of the medications didn’t work and gave me horrible side effects. The only thing that gave me some relief was a brand new, off-label drug called, ‘Corlanor.’ It took me almost a year to get used to it, but it did help with keeping my heart rate down.

Surprised to find that 85-90% of P.O.T.S. patients are female, mainly teenagers, I was horrified. I can’t imagine having this at such a young age. It broke my heart reading stories that mothers had posted about their teenage kids who were committing suicide because they just couldn’t live with it. I had to say to myself, ‘Okay Suzanne, you are never going to be like who you were before. You won’t be you. You’ll just be a different version of you,’ and that was the mindset that I had to keep. Slowly but surely, I forced herself to get out of bed. If I passed out, I passed out, I would try it again the next day. I would force myself to eat, whether I could keep it down or not. I would drink literally a case of water a day. Little by little, I managed to get back up on my feet. Every day, I took a baby step and refused to give up.

I credit my mindset and determination as a key factor in healing. Yes, there are days that are a struggle but in general, I'm pretty much back to living a normal life and you know what? It’s okay. Be strong. Accept how you are, where you are, and find the courage to keep moving forward.”

These days, I am back on her feet, back at the gym, and back to work with hopes to be an inspiration to those with a similar diagnosis to find the resolution and strength to continue. 

Charities like STARS ensure more people with POTS, just like me, can be supported and learn to live with this condition. 

You will have better days ahead, you just have to believe.


Get in touch for more help and information

843-415-1886info-us@heartrhythmalliance.org

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