Living with POTS: Getting Diagnosed
This post is about the 2 years it took to get my POTS diagnosis. I don't mean the pots you use to cook with either. POTS is an acronym that stands for Postural Orthostatic Tachycardia Syndrome. This syndrome is a chronic, invisible illness characterized by an abnormal increase in heart rate when in an upright position verses laying down . For me, my heart rate is around 70 BPM laying down, but will go over 100 BPM (aka tachycardia) when standing. If that doesn't sound fun enough, there are other issues persons with POTS experience that can include insomnia, fatigue, nausea, dizziness, fainting, headaches shortness of breath, and heart palpitations. Today I thought to myself, "I'm so sick and tired of being sick and tired." When I had this thought, I was exhausted, nauseated, short of breath, dizzy, achy and lightheaded after over an hour sitting at my desk writing. That's right... I was sitting down, but felt like I was running a marathon. Everyday I have issues with lightheadedness and fatigue, but some times the symptoms pile up and can knock me down for days. When those days happen, they stick around for a week, but have lasted for months before. During those times, all I want to do is lay down and sleep. It can get so bad that I'll sleep for 2-3 days straight, only waking up when my husband brings be something to eat and drink. It took some time, but I'm not as scared anymore when this happens. However, the first time I felt like this, I was terrified.
My First Scare
It was my last semester of college, nearly 4 years ago. I was lightheaded, exhausted, and had insomnia. However, I had felt like that for years. I thought it was because I was a college kid, working 30 hours a week, commuting 45 minutes to school four days a week, and planning a wedding. Then, I started to feel my heart beating very strongly in my chest, but I had that off-and-on for years, too. I also felt like I was going to pass out, but that also happened to me before. The reason I got scared was when all of it started happening every hour or two, and I also felt short of breath and like there was an elephant on my chest. After a few days of it happening, I called my mom in a panic. She advised me to get to the urgent care ASAP.
When I saw the doctor at urgent care, he was concerned I was having heart complications. They ran an EKG, which it came back normal. I don't remember if they ran any other tests at the office (if they did, they came back normal). So, some blood work was ordered to test my thyroid, iron levels, and much more. They drew so much blood that day... That was a long and miserable day. I honestly was afraid to go home, because I thought something terrible might happen that night. My lovely mother came to our apartment that night and cooked me my favorite dinner, chicken and dumplings.
What is Happening to Me?!
One or two days later I saw my doctor, and all the blood work looked normal. However, I was still having my symptoms. So, she ordered a 24-hour holter monitor, and I was advised to cut down on caffeine and stop driving until they ruled some more stuff out. Thankfully my husband (fiance at the time) and my mom could drive me to work and school for the next two weeks.
The following day, Jason drove me to the hospital and the holter monitor was hooked up. I remember wearing a cardigan and scarf that day, so I could hide the electrodes on my chest. He drove me to work and school that day, and I pressed the little button when I felt one of my nagging symptoms. That night, I got terrible sleep, because it was so strange and uncomfortable wearing that monitor. I remember how miserable I was getting ready the next morning. My symptoms were so bad that I had to sit on the toilet to put on my makeup, and lay down before getting dressed. I was really hoping the monitor would get me some answers.
A few days later, the results came in and said I didn't have any abnormal heart rhythms. So, back to my doctor we went... I spoke with her again, and explained I was still having symptoms and had even cut down my caffeine to only one coffee a day in attempt to feel better. She said she was leaning toward me being overly stressed, since my plate was so full. However, she wanted to see if they could get me to pass out, and ordered a tilt-table test. I don't remember how long it was before I had the test, but it was about a week. During that week she had me take 1/4 of the smallest dose of beta blockers. By the time I cut the pills, they were smaller than a grain of rice. However, within an hour of taking the medicine I threw up, was very cold, started shaking, and got extremely lightheaded. So, I was taken off the beta blockers. After that happened, I hoped the tilt table test would provide some answers.
My Tilt Table Test
I was strapped to a table across my chest and legs, and hooked up an IV. The IV line was used to give me a medicine that would force my body into the state that would most likely recreate my symptoms. My reaction to the medicine was so intense that they had to turn the rate the medicine was dropping to the lowest possible. My heart rate was still very high, but they were able start the test. I had to be tilted upright, with that medicine hooked-up for about 20 minutes.
Those were some of the longest minutes of my life. My heart rate got so high I remember feeling my heartbeat in my veins and brain, as well as the worst of the symptoms I was already experiencing. It was miserable, but I didn't pass out. They tilted me back down, and let me relax for a few minutes. Then, they took some time to explain that my body's reaction to the medicine was so strong, and I should stop taking decongestants until I could get back to my doctor. After that test, I remember calling my boss to let him know the test was harder than I expected, and he let me take the day off. So, my mom drove me back to their house, and I slept on their couch until Jason go done at work.
The results from that test said I did have a normal heart rhythm, but it drew attention to the fact that my heart was very sensitive to their medicine. So I was told to eat more sodium, drink liquids like Gatorade and Powerade, limit caffeine, and keep stress as low as possible. However, POTS was never brought up as a possibility.
Finding an Answer
I felt like there was something more, so my husband and I did our own research. My symptoms slowly diminished, and became more manageable. Our lives started changing so much the following months, and we slowly stopped looking for the answer. I still was having symptoms with some times worse than others. When they got really bad, I would take 2 or 3 days off from work and basically hibernate. My husband was awesome during those times, and would wake me up for a few minutes during those days so I would eat soup and drink water, Gatorade or Powerade.
After over a year of living like that, we decided to look for a doctor in our area. A few months later I go in with a wonderful doctor. I told her about all about what was happening, and she listened to everything I said. I mentioned POTS, and she did an in-office test to see if I had the heart rate increase outlined to be diagnosed. I failed with flying colors.
Even though there's no cure for POTS, it was a great feeling finally getting an answer. Being diagnosed gives me some hope. When I'm having bad days like today, I know there are other people who feel like this, too. I hope that by sharing my story, I'm able to give someone else hope by knowing they're not alone in their POTS journey.