Em has been on Propranolol for about a week and a half now – 20 mgs at night – and I think it is helping. The longer she is on it the more we see subtle improvements, which is a positive, for sure. Dr. Neilson prescribed it to help calm her pulse rate and try to break the cycle of her over active adrenal system.
Poor sleep, a hallmark of EDS, and constant anxiety lead to fatigue and the body tries to compensate by flooding the system with adrenaline. The adrenals get depleted but try to valiantly hold on by upping their game and produce more adrenaline to combat the fatigue, even though they are running on empty. This leads to more and more fatigue, a vicious cycle of exhaustion. At least this is how Dr. Pocinki describes it and I absolutely see his explanation in my daughter. Dr. Neilson seems to be buying into this theory and wants to break the vicious cycle of fatigue and anxiety, which the Midodrine has not fully addressed.
So, the Propranolol seems to be having an impact, although we are nowhere near where we want to be. Emily is noticing that she is actually getting sleepy at night instead of just crashing in the wee hours, but she has some bad sleep habits to break before she will be able to just fall asleep normally – years of horrible sleep will do that. She also has a cold, which is making her sleep poorer than normal so it is hard to tell. However, she is seeing improvement and that is a hopeful thing.
She is also noticing some relief in her anxiety. Not anything drastic yet, but some subtle improvements. She is having a fair bit of anxiety at rehearsals but it seems to be easing a bit as she goes longer on the medication. Night time is, and always has been, a prime time for her anxiety to kick in and that seems to be easing a bit as well.
All of which seems to indicate that maybe the medicine is starting to work. The biggest downside seems to be being extra sleepy when she wakes up, but we aren’t sure if that is just normal sleepiness from being more active. Whatever it is, even that seems to be easing so maybe that won’t be an ongoing issue.
We haven’t added any daytime doses yet and I am not sure if we will anytime soon – Dr. Neilson said we could add a couple daytime doses if she is still having symptoms, I think we will give the one nighttime dose a good long while to really kick in before adding another dose. So far I am pleased with the modest improvements we are seeing. It would, of course, be really nice if it would reduce her fatigue and really help her sleep and anxiety in a significant way but we will take whatever benefits we can get for now.