Posted 9/11/2009 6:25 PM (GMT -6)
Hey... I've been off the board for the last few weeks with just "life" stuff. I got on here today and saw your post.... How have you been feeling lately? The last time I was on the boards, I think you were dealing with side effects from Fentanyl... looking over your meds list, it looks like you are off of that now... Hope you are feeling better.
You know, the reality is that the majority of doctors/medical people don't know much about dysautonomia (which POTS falls under) and POTS. When I tell a new doctor or the ER about what I have, I have to even tell them what POTS stands for (postural orthostatic tachycardia syndrome). Nowadays, I just say "I have a heart condition" most of the time. Too hard the other way! I'm glad you are pushing on with your doctor and insisting on testing and such. The thing is, though, IF you passl the tilt table test, you can still have POTS. It wasn't until my second TT test that I "failed" it and was actually diagnosed. There are other ways to diagnose it, too (TT being the best, but there are other ways). One of which that would give a good indication of POTS is wearing a Holter monitor. Have you done that before? Let's see...there was years ago - trying to remember...I "think" it was just like the EKG sticky pads that I stuck on that is connected to a small machine that I kept in my pocket. It monitored my heart rate for about 24 hours. I think I also kept a small journal of "what" I was doing throughout the day so they could compare my heart rate and journal. Basically, it showed that I was in "marathon-mode" all day but my heart rate would go sky high with any activity - like climbing stairs, taking a shower, or even something as basic as standing up.
Back to the TT test - some people actually pass out. By blood pressure plummeted and I was dizzy and VERY nauseated but didn't pass out. You might, given some of the things I remember about your symptoms.
Anyway, I'd really encourage you to learn as much as you can about dysautonomia and POTS. Dr. Grubb is a leading doctor on the condition. Many of the articles on the web he has written. I hope to go have a consult w/ him one day; I just haven't been stable enough to travel. There's also a doctor (cardiologist) at Stanford that I saw; she sees many patients w/ POTS. She's great. What part of the country do you live in?
If you have any specific questions, feel free to ask. I hope the tilt table gives you some type of answers....