I have had my first two days at the POTS Treatment Center in Dallas and I’m feeling very hopeful. I mostly understand where the Doctor is coming from and what her treatment is trying to do- she says that the sympathetic part of the nervous system is in overdrive in POTS patients and that the biofeedback treatment aims to shut it off so the parasympathetic portion can take over. This makes sense, except that I feel a lot of POTS patients have symptoms coming from both divisions of the nervous system. She talked a lot about how our blood vessels over constrict and cause headaches. When I asked about the blood pooling caused by blood vessels not constricting enough in POTS patients, she said they only dilate upon standing. I know that’s not the case because I have issues with blood pooling while sitting and sometimes even while laying down as well. I was also disappointed that she didn’t understand narcolepsy. She asked if I fall asleep while sitting up and when I said no, she implied that my diagnosis was inaccurate. I tried to explain that narcolepsy is so much more than that and has a wide range of symptoms, but I’m not sure if she believed me. I was really surprised that she wasn’t more familiar with narcolepsy, given that it is a neurological disorder. She still seems very intelligent, though, as well as very compassionate. She talked about how bad medications are and how this program will allows people to get off their medications and participate in normal sports and activities. I’m not so sure about that. I am expecting to see improvement, but I’m not sure that this will completely cure me. I think it will really help my stress levels and anxiety as well as my health, which is what I’m most excited about.
Overall, I’m feeling very happy and hopeful. My sleep schedule went out the window a few days prior to leaving because my anxiety levels were so high. I was up worrying until 3AM every night. I just don’t feel like I can handle another let down. There has been so much money flushed down the drain on alternative doctors who claimed they would cure me and then didn’t help at all. I don’t know if I can handle being crushed like that again. And I don’t know if I can handle the disappointment my mom would feel if this treatment didn’t work for me. It was really hard watching her write the $4,500 check to the center Monday. I’m trying not to think about it too much, though, since Dr. K says I need to be under NO stress for treatment to be effective. I am trying to just stay realistic with what I’m expecting from this trip – if results are even better than I expect, great! If not I won’t be disappointed. Just getting away from the stress and drama of my home has done me a world of good. I’m SO much happier here. Today was also wonderful because we had a group session and I got to meet other people with POTS! There were two teenage girls, ages 12 and 17, and a woman who was 51. We all related to each other so much. I got the girls’ numbers – they are both so sweet! They have all had POTS less than two years, so they’re still new to the world of the chronically ill. Hopefully they will see major benefits from treatment and won’t have to stay in this world very long! I wish no one had to live like this, but I don’t know why God seems to choose the sweetest people to do so. Why are all the chronically ill people I meet so awesome? Are we naturally awesome, or does chronic illness change us and make us that way? That’s some chicken or egg philosophy for you.