Mornings are rough but I have been taking. anew (though ridiculously expensive) supplement that actually seems to be helping my energy. It's not a stimulant. It is supposed to help with the krebs cycle and has an effect on glutamate. In the past I have tried low dose DXM cough syrup for it's ability to down regulate glutamate, and I believe this does that too (or something similar) as well as other stuff.
Off beta blocker back on Huperzine A every other day (nature's Mestinon, docs won't prescribe that for me even though it helps a lot of POTS patients) and nattokinase and the new supplement. BP and HR so much better. Not perfect, but better.
The bad news: I am still getting blurry double vision as the day progresses. It seems to resolve at rest but gets worse as the day goes on. My glasses do not help (generally. my vision is pretty good and I do not need glasses all the time), they just make the double vision clearer. It's not like full double vision , like I see 2 of everything, more like I see a shadow /outline that's like a reflection of what I see- worse with reading but I see this shadow everywhere.
Ophthalmologist is my next stop. At least the doc I see is very good. Just waiting for the PEM episode to allow me to go to the doctor.
Still have the "drop foot" and it hurts like a mofo. I am also waiting on being well enough for an MRI which will definitely put me in a major PEM crash. I get over stimulated very easily-hyper sensitive to sounds(and lights and other sensory stuff). not looking forward to that. my primary care doctor refused to even give me Tylenol 3 for the pain until after I go to the eye doc, get the MRI and then contact pain management. Pain management is not something I am able bodied enough to do, and they likely won't help anyway. No way I can do long upright time in-person visits every month for a sliver of pain relief, so I guess I just suffer like always.
How are you? Still getting better or at least stabilizing I hope.