mercury Posted May 11 Report Share Posted May 11 Hi all, long-time lurker and first-time poster here. My doctor is putting me on propranolol. (This is the first medication I’m being put on after developing a currently unknown dysautonomia about a year and a half ago. I’m on salt tablets though.) He wants me on the extended release form, but the lowest it comes is 60 mg, so he’s told me to take it every other day. From what I was able to find online, the extended release effects last about 24-27 hours. It also seems like most people here take much smaller doses of regular propranolol. Has anyone done something like this with extended release? Was it helpful for you? I’m a bit worried about the “yo-yo-ing” between days… But then again normal propranolol would just give me yo-yo-ing between doses since it’s so quick. I don’t have a horribly high heart rate on standing (usually 105-115 or so, sometimes will even settle back down to not-technically-tachycardia-just-high-for-me). My blood pressure goes up or down on standing in ways I haven’t yet found a pattern for, but I’m usually around 105/75 sitting or lying down. That’s another worry, that propranolol might tank my blood pressure at a high dose, but if it can reduce the spikes that would be nice. Quote Link to comment Share on other sites More sharing options...
Sushi Posted May 11 Report Share Posted May 11 I’m not sure what the rationale is for starting with extended release. I would think that testing your response with immediate release dosing would make more sense, but of course I am not a doctor. I take 10 mg twice a day and, for me, it doesn’t affect my BP much, but everyone is different. You can take the immediate release tablets every few hours so that you don’t get a treatment gap. Then he could experience with different doses. Then, if propranolol suits you, he could switch you to extended release. Quote Link to comment Share on other sites More sharing options...
Pistol Posted May 12 Report Share Posted May 12 @mercury Welcome to the Forum! I personally would think the Yo-Yo effect from skipping a day is a lot greater than the up and down you would get from the IR version. My autonomic specialist always started me on half of the lowest dose of the regular release of any med and then titrate up to tolerance, eventually going to the ER dosing. We did so for example with Diltiazem - I started on half a 30 mg tablet twice a day and now am on 180 mg of the ER. He explained that due to the medication sensitivity in dysautonomia it is important to see how we tolerate a med and then find out how much of it is best in each case. Quote Link to comment Share on other sites More sharing options...
Jbj Posted May 12 Report Share Posted May 12 I take Metoprolol 25 mg extended release. I actually have a hard time with depression with it but there is not a lot out there. I’m really struggling with this whole thing. I tried to get off but my pulse went crazy and I can’t tolerate a higher dose! Hope you have good luck with yours! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted May 13 Report Share Posted May 13 @Jbj, some people who have found beta-blockers to be unsuitable have tried ivabradine instead. Is this an option for you? It can be a bit hard to access is some countries, unfortunately. Quote Link to comment Share on other sites More sharing options...
Jbj Posted May 13 Report Share Posted May 13 Thank you and I have heard of this. I really think I need another doctor. I’m trying to find one that is willing to try something else since I just feel awful. Doctors with knowledge and experience where I live are not easy to find. Hope you do well with your meds! Quote Link to comment Share on other sites More sharing options...
Sushi Posted May 16 Report Share Posted May 16 On 5/12/2024 at 11:03 AM, Jbj said: I take Metoprolol 25 mg extended release. I actually have a hard time with depression with it but there is not a lot out there. I’m really struggling with this whole thing. I tried to get off but my pulse went crazy and I can’t tolerate a higher dose! Hope you have good luck with yours! I have a genetic variation that makes metoprolol unsuitable for me. It is a common one (CYP 2D6) and makes me a poor metabolizer of many drugs. I thus take propranolol instead. Can you ask you doctor I’d you could try other beta blockers or a calcium channel blocker like Diltiazem? Quote Link to comment Share on other sites More sharing options...
Jbj Posted May 24 Report Share Posted May 24 Well let’s just say I am looking for another doctor. I got in really bad shape with the Beta Blocker and actually went to the ER yesterday because I felt so awful. Got fluids and sent home. Really nothing they can do. I’m drinking plenty of water but my sodium levels dropped. I’ll just up the sodium. The anxiety is what’s killing me. Yesterday none and today it’s almost unbearable. So strange. I ordered a grounding blanket and a grounding pillow. I read about grounding and I’ll try anything. My ObGYN told me to try it. I’ll try anything!! Quote Link to comment Share on other sites More sharing options...
Jbj Posted May 24 Report Share Posted May 24 Metroprolol put me in a deeper depression. I cried all the time. I’m off. My doctor got angry that I wanted off and made me cry like a crazy person. He will not give me anything else. Hope to have a new doc soon!! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted May 25 Report Share Posted May 25 @Jbj, if you haven’t already, have a look on Facebook and see whether there is a support group that covers your area. Folks there may be able to recommend specialists. Here’s a link to Facebook groups moderated by Dysautonomia International: http://dysautonomiainternational.org/page.php?ID=24 There are other groups as well if you have a search. It’s worth creating a Facebook account purely to access this local knowledge. (You can always delete it later.) Sorry your doctor was so unpleasant. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted May 26 Report Share Posted May 26 On 5/24/2024 at 3:53 PM, Jbj said: Well let’s just say I am looking for another doctor. You may have looked already but we have a physician list here: Physicians - Dysautonomia Information Network (DINET) Also, you can create a new post asking if any members in your geographic area have a physician they recommend. So sorry you've had such a bad experience with getting help. This condition is so hard to manage including emotionally. Maybe you have tried it already but sometimes meditation can help. There are helpful meditation videos on youtube that can help with relaxation of the body and mind. Hope you are feeling better soon. Quote Link to comment Share on other sites More sharing options...
Pistol Posted May 27 Report Share Posted May 27 @Jbj maybe this is helpful? It's from our you tube channel Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.