Ok so I had a friend doctor asked me why I was still so symptomatic with OI when the recommended doses of midodrine is 10mg 3/day and they have me on 2.5mg 3 times a day.
So I decided to run an experiment. I tried 5mg 3/day first day. It was amazing but I took last dose too late so only slept about 2h. I got no PEM or fatigue so I knew I was unto something. Second day I tried 7.5mg 3 / day, didn't sleep again. 3rd Day I tried 5mg 2/day and the latest dose was at 2:30pm. Slept Good and survived Xmas days!!! No PEM and I even exercised!!!
The exercised felt good, invigorating not as a chore. I have come to the conclusion than when exercise does not feel right, Don't push it and it is contra productive and is a sign that my OI is acting up.
Now the question is if I will crash CFS wise by maintaining this new pace. OI feel human and normal. I don't expect so but I will rest when things calm down holidays wise. But I feel the hope again! I just have to convince my Dr to up the dose. Argggg all they care is about not getting sued if something goes wrong.
I have learn that Most symptoms I attributed to CFS are actually OI. My immense fatigue, My inability to go on during the day and needing to get off my feet, exercise intolerance or just inability of daily life, PEM.
I am sure because I always go from a really bad state to more functional just by adjusting OI meds and this is not the first time and every time this symptoms go away or get significant better. So while I take the antiviral and hopefully the OI root cause is treated and I can lead a more normal life!!
I am monitoring My BP closely during this try out, so far so good. I had to decrease salt intake to 2mg instead of 4mg (without counting the food source).
Hope is in the air.
CFS Jackpot - Midorine incresed dose
Blog entry posted by lnester7, Dec 26, 2013.
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