Hi everyone,
I am wondering whether anybody who has viral onset (especially mononucleosis)ME and POTS had tried Midodrine, and if so whether you would be willing to share your experience of it?
I ask because I have been trying it recently, and I am finding that although it helps a lot with my orthostatic intolerance, when it wears off my viral symptoms flare up more than usual.
By viral symptoms, I mean the feeling I have which mimics the symptoms of the glandular fever/mononucleosis that was the onset of my ME & POTS. A core symptom of my ME, ever since it started 10 years ago with glandular fever, is feeling as if I still have the glandular fever. These viral symptoms come and go - they flare up when I am tired. But the Midodrine wearing off seems to make them flare up more than usual.
I have no idea why this would be, I am just curious to know whether anybody else with my type of ME & POTS (acute onset with mononucleosis) has tried Midodrine and had a similar response?
Just to be clear - I don't have positive blood tests for chronic active Epstein-Barr. I just get the mononucleosis-like symptoms as part of my ME, and I don't know what the exact cause is other than guessing that my body may have some difficulty handling the latent virus, but I don't have any direct evidence of this.
Thanks!
EDTA: Not asking for medical advice or suggestions, just curious to hear whether others have had a similar experience.
I am wondering whether anybody who has viral onset (especially mononucleosis)ME and POTS had tried Midodrine, and if so whether you would be willing to share your experience of it?
I ask because I have been trying it recently, and I am finding that although it helps a lot with my orthostatic intolerance, when it wears off my viral symptoms flare up more than usual.
By viral symptoms, I mean the feeling I have which mimics the symptoms of the glandular fever/mononucleosis that was the onset of my ME & POTS. A core symptom of my ME, ever since it started 10 years ago with glandular fever, is feeling as if I still have the glandular fever. These viral symptoms come and go - they flare up when I am tired. But the Midodrine wearing off seems to make them flare up more than usual.
I have no idea why this would be, I am just curious to know whether anybody else with my type of ME & POTS (acute onset with mononucleosis) has tried Midodrine and had a similar response?
Just to be clear - I don't have positive blood tests for chronic active Epstein-Barr. I just get the mononucleosis-like symptoms as part of my ME, and I don't know what the exact cause is other than guessing that my body may have some difficulty handling the latent virus, but I don't have any direct evidence of this.
Thanks!
EDTA: Not asking for medical advice or suggestions, just curious to hear whether others have had a similar experience.