Mayo Visit - My Experience

[ACB]

Issie and Beckles, thank you for your feedback on taking propranolol. The two Mayo docs who recommended it did not mention that I needed to keep a steady stream of it in my body. That info would've been helpful. I was prescribed 10mg 2/day to start and then told to go up to 3-4 doses/day depending upon what seemed to work best.

Naomi, thanks for checking in. I haven't posted, because I've been feeling worse and because I've been trying to figure out why and what dosage is going to help best. Yesterday was a rough day. I cried a long time in the afternoon because I'm just so tired of trying treatments and trying not to get my hopes up about them working. I was feeling like things are never really going to get better. I'm sure everyone can relate, unfortunately.

Dani, I'm one of those hyper POTSies who doesn't have high BP, usually. Last year, I had low BP with narrow pulse pressure. Now, I have normal BP. Over the past couple years, several times at doc appts, I've had high BP.

As far as current dosage goes, I've been taking 10mg 4x/day. I've done that the past 2 days. However, I'm having to go to bed anywhere between 8p (due to fatigue) and 10p, so it is hard to fit in that last dose. My husband woke me up last night to take it. I can't tell how much going up to 4x/day is helping.

I started my exercise protocol last Sunday evening, so I'm 99% sure the exercise is what's making me feel like crap. I took the propranolol last Sat and Sun before starting the exercise and it worked pretty darn well. It also worked well on Mon and since then my sx have been steadily increasing. Yesterday, I spent all day on the couch with fatigue. Today, I'm having sound sensitivity in addition to fatigue and little hints of dyspnea here and there. So, I'm not sure whether things would be MUCH worse without the propranolol or if its just not touching my body's short term rebellion against the exercise.

Thank you all so much for your support. I'm feeling very frustrated and upset about POTS after having had significant improvement over the summer. Its hard to go back to all the old symptoms and accompanying problems with family, friends, etc. I'm so thankful to have dinet to visit when I can.