So I’ve been seeing a number of specialists in my attempt to rule out all other conditions and get a diagnosis that explains my symptoms, one of those is a cardiologist. I was referred to him by my neurologist who suspected I have POTS.
So last month I got a Zio heart monitor patch for 2 weeks and then I had a tilt table test. The heart monitor did show a lot of “unexpected” tachycardia that didn’t correlate with activity. On the tilt table I felt unwell but my heart rate didn’t go up too much until they had me do the Valsalva maneuver and I promptly fainted after my heart rate zoomed and crashed.
The cardio said this wasn’t classic POTS but definitely a hypersensitive vagus nerve with very high vagal tone (hypervagotonia, which I have suspected for decades as I’ve always been a fainter even before I got sick) and either mild POTS or Inappropriate Sinus Tachycardia. So he prescribed some beta blockers (propanolol) and said we will go from there. He also told me I need to do small amounts of exercise and increase it every week, even though I insisted this drastically worsens my flu-like symptoms and often results in crashes that leave me in bed for days on end. He just reiterated that my dysautonomia would get worse if I deconditioned.
I feel kind of confused about all this and I’m feeling like maybe he thinks I’ve done this to myself by “resting”.
Has anyone else had IST as a result of their ME/CFS, specifically flu-like Epstein-Barr type symptoms? I’m wondering if all of this is caused by a resurgence of EBV. I have not yet been able to get the EA IGG test for that, but I may need to invest in it. In the meantime I’m taking the beta blockers. Any ideas?
So last month I got a Zio heart monitor patch for 2 weeks and then I had a tilt table test. The heart monitor did show a lot of “unexpected” tachycardia that didn’t correlate with activity. On the tilt table I felt unwell but my heart rate didn’t go up too much until they had me do the Valsalva maneuver and I promptly fainted after my heart rate zoomed and crashed.
The cardio said this wasn’t classic POTS but definitely a hypersensitive vagus nerve with very high vagal tone (hypervagotonia, which I have suspected for decades as I’ve always been a fainter even before I got sick) and either mild POTS or Inappropriate Sinus Tachycardia. So he prescribed some beta blockers (propanolol) and said we will go from there. He also told me I need to do small amounts of exercise and increase it every week, even though I insisted this drastically worsens my flu-like symptoms and often results in crashes that leave me in bed for days on end. He just reiterated that my dysautonomia would get worse if I deconditioned.
I feel kind of confused about all this and I’m feeling like maybe he thinks I’ve done this to myself by “resting”.
Has anyone else had IST as a result of their ME/CFS, specifically flu-like Epstein-Barr type symptoms? I’m wondering if all of this is caused by a resurgence of EBV. I have not yet been able to get the EA IGG test for that, but I may need to invest in it. In the meantime I’m taking the beta blockers. Any ideas?