After the Gastro fiasco, I was feeling really stupid. I had undergone all sorts of testing only to be told I had IBS. That certainly didn't explain the fainting episodes, joint pain and severe muscle weakness. Nonetheless, I pushed it into the back of my mind because the fainting decided to get even more exciting and move to the top of my list of health crisis.
I went back to the Cardiologist and all but shuffled into his office in March. I was so out of breath from walking into the office I nearly fainted on the floor right then and there. I was moving like a ninety year old with congestive heart failure. It was bad. At this point in time, my resting heart rate was around 100 and my blood pressure was 100/70. He examined me and said he thought I might have an autonomic disorder. He wasn't certain, but he thought I might have Neurocardiogenic Syncope or Postural Orthostatic Tachycardia Syndrome. He wanted to try simple steps first to see if we could nip it in the bud before exposing me to more testing. I was sent home with explicit orders to wear Spanx leggings, increase my salt intake and fluids. Huh? A doctor wants me to eat salt in an attempt to naturally raise my blood pressure?
So, I followed his orders. I ordered the Spanx leggings at $68 a pair. I started drinking low calorie Powerade for fluids and salt. In fact, I started drinking 4-6 LITERS of Powerade a day and was still thirsty at the end of the day. This went on for two weeks or so and I wasn't improving. In fact, I was rapidly declining. So, I shuffled back into his office after being bedridden for nearly a month.
He took one look at me and said, we need to do some testing. I think you have P.O.T.S. and we need to do a stress test and a Tilt Table Test. In the meantime, here's a beta-blocker to try and get your heart rate down and to increase your blood pressure.
The first night I took the first beta-blocker I got severe chest pain. Huh? Beta-blockers are supposed to relieve your chest pain. Not for me, apparently. The next day I call his office and they switch me to Beta-blocker number two. Same thing, but with more chest pain and now chest pressure. Whoa, Nelly!
Shuffling into the office for the stress test, I had to ride upstairs in a wheelchair to get to the right department. They hooked me up to the leads and put me on the treadmill. One minute in, my HR jumped to 160 and my BP dropped to 60/40. I nearly lost consciousness, but I managed to keep some focus. Based on the results of the stress test, he determined I needed the TTT. So, the next day I found myself at the hospital for this special test. They put me in a quiet room and strapped me to a padded board. They monitored me for twenty minutes. My resting HR was 95 and my BP was 100/70. Then, they tilted me up to about 80 degrees. I immediately began sweating, trembling and felt ill. I struggled to stay upright and my vision was fading. This went on for twenty LONG minutes. Then, the nurse told me it was time for the final testing phase. They sprayed Nitrus under my tongue to see how I would react. Thirty seconds went by and I was out. My HR had jumped to 190 and my BP bottomed out at 40/20.
I woke up laying flat on my back and was overwhelmingly tired, weak and ill. The doctor confirmed his suspicions. I had P.O.T.S. and my journey officially began.
I was sent home with a calcium channel blocker to try to regulate my HR and BP. It didn't work, so they tried me on something else. So far, it is working a little bit but, the episodes are still with me. The fatigue, joint pain, severe weakness, heat intolerance, stomach upsets, random fainting episodes and bizarre symptoms are still with me.
So, that's the beginning of the story. Next, I'll tell you about the idiot doctors I've seen and how difficult it has been to find anyone who has heard about P.O.T.S., let alone knows how to treat it.
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