I slept like a rock that night and when I woke up at around 7:30 the next morning I thought I might still be at home in Florida. After I shook off the Xanax/ Zofran hangover, my mom and I went downstairs to grab some free breakfast at the hotel before heading off to the clinic.
The hotel itself (The Holiday Inn Express at the Galleria) is pretty gorgeous and a great deal for the discounted treatment rate of $69/a night. They have a small gym, an indoor pool, a little convenience store that has things like lean cuisines, Gatorade, contact solution, etc. And then there’s the free breakfast.
Now—keep in mind that I had been on bread and liquid diet for six days—so by Monday morning I was ready to eat everything. I tried to take it cool and had a banana a bagel with butter and a biscuit—my stomach hurt almost immediately so I drank a cup of tea and waited for it to calm down.
As we were sitting in the lobby getting ready to go back upstairs—we came across another mother and a daughter waiting for the hotel’s shuttle to arrive. My mom, being my mom, quickly asked them if they were here for the treatment program too—and they were!
Sarah and Linda came from Chicago (or near Chicago) and they had the appointment just ahead of us at the clinic. We sat down to talk for a few minutes before they had to leave. Sarah is just two years younger than me and just like me (and from what I hear, LOTS of other POTS patients)—she’s very Type A! Before POTS she was active in sports and living in a dorm at her college where she cheered on every team in full costume. Their shuttle arrived and they headed over to the clinic and Mom and I went back to the room to rest a little more until our 10:00 appointment.
When it was time, we headed downstairs and hopped in the hotel’s shuttle bus. We hadn’t rented a car yet, still trying to figure out whether or not we really needed one. The shuttle would take us back and forth within 5 miles of the hotel after all…And besides that—driving in this area was a nightmare. There is construction everywhere that has been going on for—get this—over four years. It doesn’t look like it’ll be finished anytime soon either.
There are lots overpasses and underpasses, the kind that we only have in South Florida right next to the airports. They totally flip me out and make my vertigo go haywire. Not a great thing that we have to cross them every day—but I’ll live.
The ride to the clinic was about ten minutes and we passed a lot of restaurants, malls, and upper class neighborhoods. The actual clinic is in a tall medical building and I was flabbergasted to find the POTS Treatment Center was located on the 10th floor. Mom and I looked at each other like…what…could possibly be the reasoning behind putting a center that SPECIFICALLY treats patients who standardly have a hard time with elevators on the tenth floor of a building!!? (I later found out from Dr. Kyprianou that her practice was first used to treat migraines and pain syndromes like Firbomyalgia—and POTsys didn’t come till later, after the center was already established in its present office.)
Once we had succeeded at our quest to ride an elevator to the top of magic medical mountain, we went to the office and met Linda (Sarah’s mom.) Sarah was already in for her appointment and so we peered around the waiting room staring at a map of the world, thumbtacks marking where others had come before us…and of course…the book every POTS patient has read, seen, and had their mother tell them to buy: POTS Together We Stand: Riding the Waves of Dysautonomia.
I was brought into a room where Dr. Kyprianou was waiting. She began by asking me some questions—did I have joint pain, nausea? What was my diet like? What had doctors before her tried that had worked and hadn’t?
Once we’d gone over my history I was attached by the palm and finger to a small monitor, not unlike the ones you’d get for an EKG. But this was weird—she was measuring the outside temperature of my hand.
Why? Apparently there was a way of testing the percentage of circulation my hand was getting based on its temperature. By measuring how cold it was, she could see how much or how little blood I was getting. My hand was in the 70’s. It’s supposed to be in the 90’s.
We also had a chance to meet Katie and Andrea who work in the office–the whole enviorment of which makes you feel very comfortable immediately.
With a few more introductions about the journey I was about to embark on—it was over, at least for now. She wanted us all (Me, my mom, Sara and Linda) to come back at 3:00PM.
My mom and I hopped back in the shuttle and stopped at a deli on the way home, picking up sandwiches before heading back to our room at the hotel. I immediately fell asleep for an hour.
When we returned at three, bellies full and me more tired than when I’d woken up—we met back up with Sarah and Linda and went in to speak with Dr. Kyprianou again. She handed us all packets on the Fight or Flight mechanism and went over a diagram of the autonomic nervous system. (Which was when I snapped this photo, to her surprise!)
I think it’s really interesting—a large part of this program is education. Why is this happening to your body? What is the physiology behind POTS? During her talk she encouraged us to ask questions—and boy did I have questions….
Does the POTS Program work for people with JUST POTS? Or POTS and neurocardiogenic syncope?
Yes, it works for people with neurocardiogenic syncope.
Does the POTS program work for people with migraines?
Yes. By helping to control circulation, this program works very well (and was originally intended for) people with migraines.
Does the POTS Program only work for young people—or people older?
The program has worked for all ages of people, including a 53 year old patient and a 12 year old.
How many patients do they see?
On average three patients per week.
She also explained some of the procedures of the program
-Learning to regulate the blood flow and increase body temperature.
-They do this by using sensors on the skin that will help you to see your levels rise on a computer screen
-They observe muscle tensions and teach you how to control it.
-They measure anxiety through calvonic skin response (sweat)
-They teach the brain to control the heart rate
-They train you in three positions—reclined, standing, and sitting.
-A nutritional plan is given, as well as vitamins and supplements
-Sleep training is also given, as well as exercise goals
-The entire program is followed by a 2-3 month home program using portable sensor equipment.
The whole meeting was super informative and got us all really excited about the next couple of days. But the rest of the night was about four bites of garlic bread and 8 hours of sleeping like a rock. Getting your hand temperature read really takes it out of you, I guess.