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.
Huperzine can slow the heart rate which is why you find it helpful. But since it's a supplement no MD will prescribe it. If it works take it has also been my way of thinking personally.
You may have a worsening astigmatism if things are slightly doubling or a small misalignment of the eyes which is easily corrected with a prism in your lenses. You may want to lubricant eyedrops like Systane, sometimes dryness causes vision to blur later in the day too. Of course none of this is medical advice (disclaimer...), I hate lawyers..... Your Ophthalmologist can help you out with that for sure!
I'm hanging in, nothing worse so I take that as a win!
Docs can prescribe Mestinon which works in a similar way. I know they can't prescribe a supplements. I would rather have a medication that is USP verified. But they won't prescribe it. Not sure why. Beta blockers are not good for asthma patients and propranolol made my albuterol inhaler useless.
I tracked my Hr /BP with and without the Hup supplemtn.Laying down, sitting and standing several times and shared the data with my doctor. Even though with BB after 1 minute of standing HR as 120+ and BP 150/98. On hup a HR just over 100 and 125/85 BP standing 1 minute. These are average numbers. She still won't prescribe Mestinon. I have asked several doctors about it no one will. Guess I need to wait a few years to get into the POTS center.
It's too bad you have to wait... Have you talked to the center in Utah to see if that is a viable option?
It's the travel that is the issue. My husband and I have looked into it and the wait list is only 1-4 weeks at the moment. I cant do planes, too much upright time. Considering a train, but that will take a really long time and I may not be able to lay down.
We are hoping the place in New York opens sooner rather than later. it's part of Mount Sinai (or at least involves some researchers there -Putrino Labs) New York is drive-able as I can lay down in the backseat. I have no idea when that facility will open and if there will be an immediate waiting list, but am hopeful.
A prism in the lenses sounds really cool-like a fairy crystal lol.
Thanks for chiming in. :)
Correction, my doctor said she "might" give me a couple of days worth of Tylenol 3 if I jump through all those hoops, which I am not physically able to do. The ADA apparently does not apply to us with ME, POTS etc even thought they are recognized disabilities. every single doctor treats me like I am fully able bodied which cuts off my access to care.
Funny my husband pulled a muscle in his back a couple of years ago. Much less of an injury than what I have, but he was in a lot of pain. The same doctor prescribed him about 7 days worth of vicodin. Did not make him get an MRI or any other nonsense. She simply treated him