Hi guys! Just wondering if anyone has had a similar set of issues and, if so, what helped them!
For the past year or two, I've been feeling run down and not really able to exercise (used to be super athletic, which seems common for dysautonomia patients), plus having a hard time with cognitive stuff and really frequent "migraine aura"-type symptoms. I think I have it much easier than a lot of you guys - really feel for people who can barely stand
I don't think I have POTS. I haven't had a TT test, but the "poor man's TT test" shows that my HR goes from about 80 lying down and stays at 95-100 standing up for a while. Holter monitor showed that my HR runs a bit higher than normal, and stays at 80 or above when I sleep.
I don't have orthostatic hypotension either. My BP goes from about 95/60 lying down to 95/75 standing up. When I did a stress EKG, it went up to 140/105. Cardiologist seemed surprised that my diastolic blood pressure goes up so much. In general, I can tolerate low-intensity exercise without an issue, but when I do higher intensity exercise, I get really bad chest pain and just... can't go any faster. I could try to sprint and my body would just top out at a slow jog.
I do get presyncope occasionally if I'm standing for too long, but I can avoid it by just kinda moving my feet around and crossing my legs if I'm standing in line.
Cardiologist said echo was fine, he's doing a heart MRI just to be sure, but he thinks it will be normal.
I've tried a ton of meds and nothing is working at all. Anything that lowers the heart rate seems to drop my blood pressure unacceptably low, and anything that raises the blood pressure makes my heart feel like it's jumping out of my chest and I have what feels like a constant migraine aura (vision issues, trouble finding words, etc), which my neurologist said is caused by too much vasoconstriction. Salt/water and compression socks don't make a difference, although I haven't tried florinef yet.
Both neurologist and cardiologist have said something about too much noradrenaline, but isn't that basically the same issue as in HyperPOTS? Why would my systolic blood pressure stay so low in that case?
Thanks for reading this wall of text, would really appreciate any replies