Rough Crash - HR Monitor be damned

MeSci

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,232
Location
Cornwall, UK
Debbie23 said:
I definitely think that I don't feel any better in myself in terms of symptoms like fatigue and weakness for having NOT taken it, on the days I forget etc. if that makes sense. For example when I had that profound weakness of literally not having my legs hold me, I wasn't taking my propranolol in any disciplined manner everyday. I allowed medication to slide because I was just so poorly after the op. I've invested a small amount in an app to help prompt me to take medications and I've been taking it daily since then and now, unless I was to significantly over do it, while I couldn't stand for very long at all, I can stand to transfer to my wheelchair from bed etc.
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Please, anyone taking beta-blockers, be aware that they should not be stopped suddenly. See here, for example, where it says:
As with other beta-adrenoceptor blocking agents, treatment should not be discontinued abruptly. Either the equivalent dosage of another beta-adrenoceptor blocker may be substituted or the withdrawal of propranolol should be gradual.
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D

Debbie23

Senior Member
Messages
137
MeSci said:
Please, anyone taking beta-blockers, be aware that they should not be stopped suddenly. See here, for example, where it says:
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Thanks for that. To be fair to my GP she probably phrased it that way to me, my brain tends to get a bit fried at the end of a in depth conversation! But I will definitely bear this in mind. I was told to let them know if I was having problems so it's most likely the case that I remembered what they told me wrong! :redface: :) Edit; I've just realised this doesn't really go with what you quoted! Sorry. Very tired brain tonight!

Im definitely remembering to take them every day now. I've got an app that prompts me to take medications, so I'm much better than I was! It used to be that I just totally forgot to take them, with this app I'm making sure I do.
 
SDSue

SDSue

Southeast
Messages
1,066
MeSci said:
Please, anyone taking beta-blockers, be aware that they should not be stopped suddenly. See here, for example, where it says:
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Thanks for mentioning this important information! I was on a low enough dose that I was able to taper quite quickly as per my doc's orders. Even so, it scared me a little as we PWME can have some bizarre reactions to things.
 
SDSue

SDSue

Southeast
Messages
1,066
Sidereal said:
Nope, but I am planning on trying it.
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I don't know about you, but my list of "planning to try it" looks like this:



biggest-book.jpg
 
SDSue

SDSue

Southeast
Messages
1,066
Thanks, @Sushi . On my own, I'll try a lot of things, but when it comes to the heart, like all things electrical, I wait for solid professional advice! The problem is, who treats OI/POTS successfully? Cardo? Neuro? Neither seem to have a good grasp on it.
 
Sushi

Sushi

Moderation Resource Albuquerque
Messages
19,970
Location
Albuquerque
SDSue said:
The problem is, who treats OI/POTS successfully? Cardo? Neuro? Neither seem to have a good grasp on it.
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There is no particular specialty that you can count on here. You can have really bad experiences trying to treat dysautonomia with any of them. I think the only way to go is patient recommendations. There are a autonomic specialists who are cardios, neuros, electrophysiologists, internists--but most within those fields will not have much knowledge. The www.potplace.com forum is a place where some patients find doc recommendations. The problem, once again, is that there are only a handful of real specialists and they tend to be booked up a long time ahead.

Sushi
 
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