The tachycardia upon standing (POTS) has been greatly reduced with the help of Mestinon as well as the degree of severity of the dysautonomia symptoms, namely brain fog. My low blood pressure continues though, despite using florinef and midodrine.
I cannot take more than my currant dosage of midodrine (3.5 start of day and 5.0mg 3 hrs later) because it occasionally has caused my bradycardia to become significantly worse. My systolic blood pressure is still lowish -averaging 100 but the diastolic is always low, last week there was a 41 reading, today 48. The brain fog, cold to the bone feeling take over when I get readings like that.
With my diastolic pressure actually getting worse than it was at my worst POTS episodes last year, is it possible something else is going on with my heart or my veins/arteries( perhaps EDS since I'm very hypermobile) rather than simply accepting that the midodrine is not a good choice for me? I needed 2 florinef tablets to get close to a normal reading but gave me horrible headaches so I had to discontinue.
What else is out there for me to ask the neurologist to allow me to trial? I cannot go on a beta blocker b/c of the low heart rate. Unfortunately, he is so immersed in the 'mestinon camp' that when he added the midodrinine to my drug protocol 2 months ago, he told me if that didn't work, I should go to counseling to learn how to cope! What?? Surely there are other drug options out there to raise blood pressure!!
Strangely, Sudafed will often (not always) give me the the most normal blood pressure AND pulse values and I'll feel better than with the other drug aids but unfortunately that only last for about 3 hrs. I have no idea why sudafed would work better than the other drug aids. Does anybody else get results like me? I don't think I should take sudafed 3-4 times/day indefinitely . Or should I?
Anybody have any ideas?