midodrine 10mg per day (day 4)

I went skating!! I have been pushing my limits and I know I need to account for ME so I don't relapse, but I always like to do this to see what is OI vs Deconditioning (which I believe is BS).

I had a full day, did not rest nor stop one second, I have been socializing, playing with my kid, went out, made dinner, laundry......

I have no symptoms when I am on current dose. My muscle pain is gone, I am even sleeping great but what surprises me the most is NO PEM, no PENE and just the overall sense of being feeling great.

The main thing is the little things that we learn to live with, like every time I need to go upstairs is like ohhh no I need to go up, vs now if I need something from the second floor I just go get it, I do not think about every single movement, how to safe energy or how to make everything with the less amount of effort possible. My head is clear (only while dose is on my body, as soon as dose runs off it feels titanus like in brain again).

I also been exercising, 2 miles in treadmill. No PEM from that. Is just amazing, I will hold back again to make sure this is sustainable and work my way up slowly.


Have u ever used flurocortisone/florinef, i just wonder if u have as i may have access to some to try?
Interesting that u have found something for fast relief, good onya
Yes I am on it too. I take 0.15 (one pill and a half) per day. That was the first time I experienced improvement when I started the florinef. I got out of bed with that one! I am on both for now, but I think I will keep playing with midodrine, they say the recommended doses is 10mg 3 times per day so I am still at 1/3 of recommended doses, imagine where I would be on full dose. I am tritaring up because I have to make sure the BP does not shoot up.
Well florinef I have see is 20mcg so a very low dose. Think that .02mg. Not sure what effect one would get from that.
That is to low, they recommend .2 mg. Now here is how the doctor decides how much is ok to give me. The florinef will raise the BP, so he watches my lower number of the BP so if it is within normal range doses stays put. When number goes over 90 then is too much. so I try to maintain the lower number of the BP between 70 and 90. I got this doses stable before the midodrine so now I can play with dose knowing which drug is doing what. With florinef you can build tolerance so you don't want to start full dose. Also, is a potassium depleting drug so I make sure to drink one coconut or electrolyte drink a day. I also take 2mg (used to be 4mg) of salt a day. Also, I need they do a (I forgot the name where they measure salt and potassium) every 3 months.
Doesnt sound like a treatment for me then as my bp can go high with sinus infection eg 160/110. Though normally it is ok.
the weird thing is mine used to go up too. It was all over the place, but that was before I understood my electrolyte needs. But the resting BP was low, BP when standing after a while was low. BP when standing or crash was high.

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