POTS from 100 to Zero in 2.3 seconds

Ever since I could remember I have had an aptitude for adventure. I like to be on the move, engage in sports and any out door activity and most importantly play music. I have been playing guitar and singing since I was twelve. I’ve played in various bands and the fun of being on stage is getting to run around it and engage with the crowd. 

But that all stopped one morning in June of 2020. In one fell swoop my on-the-go lifestyle went from 100 to zero in 2.3 seconds. I had returned home from traveling around Australia, Tasmania, and New Zealand. The pandemic of Covid-19 had just broke out and begun taking over the world, swallowing everyone and everything in its path. During my last two months I had gotten severely sick, twice. Once in OZ with what was something more horrific than the flu. Someone had to help me physically get to the doctors and every few feet I would sit in the street huffing for air because I couldn’t breathe, nor did I have the stamina to stand.

Mind you, this was when the pandemic was just breaking out and no one really knew much about what to do. And in Australia, they didn’t have many cases so when the doctor prescribed me some heavy duty antibiotics, I don’t think COVID had even crossed her mind. I asked her if it could be COVID, but she assured me it wasn’t. I was not sure I believed her and I’m not saying that’s what I had, but I will say, I have had the flu a few times in my life and it was nothing as horrific as this. I truly thought I was on my death bed. Luckily I was able to beat it while living in a hostel with eight other people, which was not an easy feat.

Once the majority of my body felt somewhat better, I moved on to New Zealand. I met up with a friend there for a few weeks and we bummed around Queenstown. We took on the task of hiking Ben Lomond, a famous mountain there that most everyone hikes just to say they did it. I knew from how difficult that hike was for me that I had not fully recovered. I thought my lungs were going to explode which was not normal for me. When we were about a half hour from the top it began to rain and the temperature dropped immensely. And no, we were not prepared for this. So we got drenched but continued on because we were so close. I had a feeling on the way back down that this was really going to hit me. I just wasn’t sure how. Luckily the rain had cleared and it was an easy walk back down. However, I got hit with a bad case of tonsillitis and my throat feeling like it was closing up. I only had a week to get back to the United States before the New Zealand borders closed for a month. But after seventy two hours and five flights later, I managed to get home. I rested for at least two weeks and by that time felt completely normal again. 

I carried on with my usual routine of summer time fun. I swam most every day and walked my dogs and played music. What else can one do in the summer with a pandemic that closed down the world?

Then it happened. I was swimming one day and I got this horrible burning cramp in my stomach. I thought maybe I had eaten something so I got out, shook it off and waited for the feeling to pass. The next day the same thing. This repeated for the next several weeks. Slowly but surely it was getting worse and worse. The pain was growing each day. I finally went to the doctors and told him something is not right. I got routine blood work done (several times) and nothing was showing up. My weight had started to drop and I didn’t weigh all that much to begin with. I am 5’8” normally weighing in at 121-125 lbs but was now weighing between 103-107 lbs on any given day. Again, still unexplainable to the doctors. My GP then began ordering every stomach test known to man and only some known to martians.

CAT scans, MRI’s, more blood work, a GI specialist and an upper endoscopy, more blood work yet again and still nothing. At some point during all theses tests, I noticed my symptoms getting worse. I started passing out and had heavy brain fog (And as a song writer brain fog is your worst enemy!). I felt light headed and dizzy most of the day and chronic fatigue. Then the random nausea and vomiting. It was unbelievable.

I just wanted to scream “What the hell is going on with me and why can’t anyone figure it out?

Finally after all the poking and prodding, I decided it was time to pay my OBGYN a little visit. Maybe there was a woman problem I hadn’t thought of. I must say, she was a Godsend. After my exam she sat down and talked to me like a real patient and not just another number and I explained to her all my symptoms and then some and within three minutes of listening to me she said “I think you have POTS.” 

I said “What the hell is POTS?”

She explained it to me and she gave me the number of a cardiologist who diagnoses it and maybe he could point me in the right direction. So I made an appointment and had a tilt test done as well as having to wear a heart monitor for two weeks. The tilt table confirmed I had POTS and the monitor solidified the evidence of lots of tachycardia.

Unfortunately, he did not treat the disease and only tested for it, so again I was on my own. I didn’t have the time or patience to wait around for these doctors to maybe figure out what I could do or where I could go. So I called every clinic I could find that treated POTS. There were a few in Texas that were out of pocket but quite steep especially for only doing virtual visits. Then I reached out to the Mayo Clinic, which was expensive and had a waiting list that stretched out well past a year. I was willing to relocate to Minnesota, but they rejected me! I was shocked.

There were several other places I called but because of the insurance I had, they wouldn’t touch me with a ten foot pole. So here I am, crying because I had hit a breaking point. Every which way I turned I was running into a brick wall. I didn’t know what else to do. 

Fortunately, we had some family coming in to stay with us for a week not too long after the Mayo Clinic rejection. Within two days of them being here, my cousin found an out of pocket neurological center that deals with POTS patients. This way I could keep what crap insurance I had and not get penalized because it’s out of pocket. My cousin had sent them an email before I was even out of bed and by that afternoon, the doctor called and spoke with me for about an hour.

He explained what I must be feeling, hitting the nail on the head with each description and said that he successfully deals with POTS all the time. I looked him up and he has won some awards for his research and work. I finally had a small light at the end of the tunnel. I made an appointment for July of 2021. Not to mention this place was only an hour and a half drive from where I live. Very commutable. 

My first visit was great. They did a comprehensive ocular test and some balance testing. On my way out I was speaking with the receptionist and she mentioned they had just discharged five patients who claimed they felt 100% again. I asked if they were on medications or anything and she said they were on an herbal remedy and some multivitamins. That sounded promising to me. Am I claiming that will happen to me? No. Am I hoping for the best? Absolutely. To have my life back again or better is a dream come true. I am tired of being practically a vegetable that lives in bed or on the sofa because I don’t have the energy or the brain power to do anything for long periods of time. So here’s to the hopeful light at the end of the tunnel. Cheers to that.

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