TinyT, I can't believe that any doctor would say that your test was negative when you had such an increase in heart rate. Is there some other doctor who has more experience in this field who can give you a second opinion about your tilt table test results? I know it is difficult for those of us with low energy to look for another doctor but in your case it might be worth it, especially if your current doctor has decided to not even treat you for this condition based on a negative test result. (or did I misinterpret that point?)
Even my own cardiologist, who did my tilt table test and said that it was very clearly positive (a huge and sudden drop in blood pressure, my failure on the tilt table test seems to be more in the vasovagal category) has often told me that autonomic dysfunction is not his specialty. He says that if I really want a more detailed workup I need to go to someone who is more of a specialist (e.g., he sometimes mentions Dr. Blair Grubb in Ohio). However, while a specialist might be able to tell me more details about my specific problems, I'm not convinced that the energy/expense of going to another state, and going through a bunch of more tests, is worth it. I don't think there's much chance that a specialist could prescribe a treatment regimen that would work any better than what I'm already doing. I could be wrong but that's what my decision is for now.
In case anyone is curious, what is working for me (well,
mostly working...) is a combination of midodrine (ProAmatine), fludrocortisone (Florinef), time-released potassium (K-Dur), salt tablets (Bio-Salt) 5 times a day, extra water (about 3 liters/day), avoiding NMH triggers (e.g., heat, standing) and resting a lot. I sit down for everything (bathing, brushing my teeth) and rest with my feet up whenever possible. I rest with my feet up after eating (less blood in the extremeties due to splanchnic pooling). If something big is coming up I do a lot of pre-emptive resting. On the other hand, I do try to take short walks when possible, mostly to do errands, because a little bit of walking does seem help me. But it's important that these short walks never include any standing. I always walk for a few minutes and then sit down! I take a folding cane/seat with me in case there is no place to sit.
It's difficult for me to find the right balance between resting and doing stuff. But I HATE having to rest so much.
![Frown :( :(](data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7)
So, while I'm not in a huge "push/crash" cycle like I was so many years ago, I usually end up pushing a bit more than I should.
On the other hand, my mental health is also important! I remind myself that it helps me psychologically when I accomplish something (hey, look, I actually cooked one simple dish! yay!). That feeling of accomplishment makes it worth it for me even when I have a crash after the fact.