Amber Shares her POTS Journey: Part One

Hello all! My name is Amber Aerni. I am 28 years old, and I would like to tell you the story of my POTS journey.

Yes, I refer to my POTS as a journey rather than an illness. One of my favorite quotes is from the Aerosmith song, “Amazing”:
“Life’s a journey, not a destination.”
My hubby thinks I’m crazy, but I’m a firm believer that if Aerosmith comes on the radio, I’m at the right place at the right time. I’m a huge Steven Tyler fan, so I’m pretty sure that won’t be the last reference to them I make, sorry in advance. Anyway, I didn’t mean to get off subject; I get sidetracked easily.
  

So, on April 4, 2017, I was on my way back to work from my lunch break and didn’t feel quite right.

I just assumed it was because I hadn’t eaten that much and all I had to drink that morning was a soda. I made it back to my office (I’m still not sure how, I was so out of it) and decided to eat a banana, thinking that the potassium would give me some energy.
Boy, was I wrong. It didn’t help in this situation, it only made me more nauseous and dizzy (I have now found out that this was happening because of possible blood pooling). So, I texted my husband to let him know I wasn’t feeling well. I went across the hall to let my supervisor at the time know that I was feeling unwell and faint, and that my husband was on the way to get me. I wasn’t going to drive considering how faint I was feeling.
After getting home I, laid down and felt a little better, but every time I stood up I got dizzy, so I decided to get my mum to take me to our local ER. They told me I was dehydrated, gave me a bag of saline, and said that my orthostatic vitals were off. They attributed this to dehydration. I was told to drink plenty of fluids and rest. I assumed they were correct because I hadn’t had much water that day. I instantly felt better after the saline (I know why now), but the effects wore off by dinner time. I didn’t eat much dinner because I was so nauseous and dizzy upon standing. We decided to go to another ER that was about an hour away and ended up staying most of the night in the waiting room. We finally got back to a room, only to fall asleep while we were waiting for the doctors to tell me I had a viral bug and should follow up with my PCP. I worked at social services at the time and saw lots of people in a very small office, so I thought this was very likely. I had also been on an antibiotic from where I had wisdom tooth surgery on March 24, 2017, so I just assumed they were correct and that I had a very bad viral bug.

 Well, as time went on, my nausea got worse.

I couldn’t keep food down and had constant upset stomach. Shortly after, I followed up with my PCP as advised. They ran all kinds of tests and decided to put me on a broad spectrum antibiotic to tackle what was still thought to be a bad viral stomach bug. The antibiotic only made my stomach issues worse. As the weeks began to slip away, I just laid around in bed, purely exhausted, only moving from the bed to go to the bathroom or doctor’s appointments. I was dizzy anytime I stood up or sat up for too long (which was only a few minutes). I didn’t feel like I was getting any better. If anything, I felt like I was getting worse.
As May was quickly approaching, I went into work because I knew I had so much to get done after being out. I was also preparing for a birthday vacation that my husband had planned for me months in advance. I wanted to regain some sense of normalcy. Somehow, I made it in and got my work done so that I could go on vacation. As the antibiotics left my system, I felt somewhat better– still not 100 %– but better than before.
I somehow made the four-hour trip to the beach and enjoyed myself other than occasional spell of nausea and dizziness. I pushed through and thought I was on the road to recovery.

Boy, was I wrong again.

I went back to work for a four-day week and made it through, again. I was still trying to regain a sense of normalcy, as I had always been a busy-body who always had to be doing something. On that Friday, I decided to go with my mum and mother-in-law to a high school rendition of Annie at the school where my mother-in-law taught. We had planned this before I got sick for our birthdays. We are all May babies.
Gosh, was that a bad idea. I didn’t even make it through to the first intermission. I became super-hot and felt like I was going to pass out. I had to excuse myself so I could go splash my face with water and step outside. That helped a little, but I finally had to go back in and let my mum and mother-in-law know I couldn’t make it sitting inside, so I would sit in the car if they wanted to stay. Luckily, they were very understanding and decided we would leave. That weekend, I hit rock bottom again. I couldn’t do housework, I was dizzy, nauseous and my stomach was upset again– sounds like a Pepto-Bismol commercial.
So, I went back to my PCP several more times and had several more tests done. Still nothing showed up. Throughout the rest of May, I tried going into work and barely made it in for a few hours at a time. At the end of May during one of my PCP appointments, I just broke down crying while my husband and I were back waiting. They kept trying to shrug it off and say that I was fine, but I knew that it wasn’t a viral bug making me feel this way.

Finally, his nurse saw my desperation.

That day the doctor made a call to a cardiologist and rheumatologist. I was quickly scheduled for an echocardiogram and a heart monitor. The first time I saw the cardiologist, my mum and I noticed a monitor he had in his exam room that gave a brief description of POTS. We had already thought it was possible, based on what we had read online. We hadn’t been certain though, because I hadn’t fainted like so many people with POTS. I now know syncope is what I was experiencing, and not all POTS patients faint.
Thankfully, when we saw the monitor, it clicked that we were on to something (Remember when I said the ER said my orthostatic vitals were off? That was part of this). During the appointment, he explained that the heart monitor and echo would give him more information. He thought it could be POTS, but wasn’t certain and suggested I try drinking more water and eat lots of salty foods. I did that and it helped– but not enough to keep me upright or on my feet for very long.
This is part one of Amber’s story. Check back tomorrow to read the second half.

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