AHH! Definitive diagnosis!!! Six months of trying to sort this out, and at long last! Proof we're not crazy!!
Today I was formally, officially, once-and-for-all *diagnosed!* with a condition called POTS -- (Postural Orthostatic Tachycardia Syndrome). Whenever I stand up, it's like a healthy person running in place. My resting (lying down) heart rate lies between 85-115 beats per minute, while yours is probably around 60. When I remain standing for as little as 3 minutes, my heart rate jumps to 120-155 bpm...way too high! Luckily my blood pressure (after lots of testing) averages out to be relatively stable, which is why I haven't fainted as often as other POTS patients, making my diagnosis even more elusive.
To learn more about POTS, please visit some of the sites and videos I've posted on the the right-hand column. I'm sure I'll be writing more about my personal experiences in the future.
For right now, my mom and I are, somewhat ashamedly, super ecstatic to have this huge burden (of finding a diagnosis) lifted off our shoulders. It's truly been an uphill climb, dealing with so many doctors who accuse us both of being hypochondriacs, and the fact that POTS has only been identified in the last 15 years. Most doctors don't know anything about it.
>>Final Report: Autonomic Reflex Screen
"Conclusion of 3/27/09 Tilt Table Test"
Clinical problem: Autonomic disorder, fatigue, tachycardia
Abnormal study. There was *significant orthostatic tachycardia* on tilt-up as can be seen in POTS, deconditioning/dehydration, anxiety, and other hyperadrenergic states.
Heart rate increment was *excessive!!* and patient developed weakness, trembling, dizziness, crying toward end of head-up tilt. (Note from me: and this was only 10 minutes. The one at our local hospital was 40 minutes! It's incomprehensible that that one was pronounced "normal.")
Breathing test, normal. Sweat test, reduced in the forearm, normal everywhere else.
- Supine, 94 bpm, 118/64
- 1 minute standing, 120 bpm, 110/82
- 5 min, 136 bpm, 100/70
- 10 min, 136 bpm, 104/72
Anyway, HALLELUJAH! The search is over! We're doing some more tests tomorrow: blood work, thermo-something-sweat test (will help determine how to approach exercise), ultrasound of my abdomen, and a couple more consultations...including one with our go-to guy. Looking forward to getting home certainly by Wednesday and treating this diagnosis (yippee!) full-time.