"Suffering the Slings and Arrows of Outrageous Fortune"

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.

 

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Comments on: "Beta Blocker Update" (3)

  1. So glad it might be helping. It is one of the very few medications that has done anything positive for me over the years. I take quite a bit at this point, but it sure helps my tremors, and high pulse rate. It basically blocks the physical response to anxiety- you still have anxious moments, but the physical reactions are stopped so it reduces the amount and effect of the anxiety. My oldest is taking it now. Talk about day and night! She has PCOS- and skips her periods for months and months at a time. With in two weeks she was on an immediate 30 day cycle. Has helped tremendously with her anxiety symptoms and sleep schedule. My youngest has a mutation called TRAP1- I was reading about it months ago and stumbled across an article/trial of the beta blocker. Apparently fibro like symptoms, anxiety have been roughly connected to that particular mutation and the beta blocker showed remarkable improvement in some. That was enough to push for my oldest to give it a try. I suspect some of her issues are dysautonomia driven and we have seen such improvement.. ah sorry for the ramble, but hoping it works well for her. My oldest is taking 40mg and I think we might go to an extended release soon. I take extended and then another 40 to 80 throughout the day. my tremors tend to come and go in strength so at times I need more or less. We haven’t tried it on Abby(who has the mutation we have not done testing yet) she has such bad reactions to everything we just cannot right now, plus as her allergies get worse if she were to need her EPI the beta blocker can block the EPI from being effective.

  2. I’m really thrilled to see that this is working for Em! My cardiologist put me on a beta blocker a couple years ago for a heart issue and though the heart issue is resolved, I’m staying on it because it helps so much with anxiety. I also find that it helps with POTS attacks. Before starting the medication, I would be dehydrated, my heart would race, I would notice and start worrying, which would trigger adrenaline, which would speed up the heart, which would trigger more adrenaline…now the adrenaline doesn’t really hit and I worry for a bit, then realize that it’s just POTS and I need to lie down and drink some water.

  3. Has anyone been having a rebound effect? I just started a week and a half ago and at first it was great, then I started waking up when it wore off because of excessive sweating, rapid heart-rate, chest pain. Should I talk to my doc about going on XR propranolol? I’m just worried that she will take me off it and this is the first good sleep (when I do sleep) I may have ever had.

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