Nijn Posted August 14, 2016 Report Share Posted August 14, 2016 Hi guys, I started with propranolol a few weeks ago (2 times a day, 5mg) and I was wondering if some of you might have similar experiences with it! The first week I felt really bad, in the sense of being terribly exhausted and 'out of it'. My heart rate immediately slowed down about 10 bpm though (lying down as well as sitting/standing). Now, the side effects have lessened a little so I'm able to judge the overall effect a little better. What I'm noticing is that I love how it slows down my heart rate, even when I've had a really bad night (waking up with a heart rate of 110, which slows down to 85 after taking the bb). But, it doesn't seem to improve my symptoms with sitting or standing up at all. It even seems as if my shortness of breath and muscle weakness have worsened on it. Does anyone recognize this? I'm curious what my doctor will say about it in a few weeks - he told me ivabradine would be another option if this one wouldn't work for me, but I've also heard things about the combination of propranolol with midodrine? I'd love to hear your input :). Thanks in advance! Quote Link to comment Share on other sites More sharing options...
Katybug Posted August 14, 2016 Report Share Posted August 14, 2016 I was not able to tolerate propanolol because it made me like a zombie....the fatigue was overwhelming. As for your comment that you shortness of breath and muscle weakness might be worse, beta blockers are contraindicated for people with MCAS as it can cause mast cell degranulation, and, therefore, breathing problems. I don't know if you have MCAS or not, but thought I would mention this just in case. I believe there is also some concern with beta blockers and asthma but don't quote me on that. Quote Link to comment Share on other sites More sharing options...
statesof Posted August 14, 2016 Report Share Posted August 14, 2016 I've used atenolol which is a different drug, but also a beta blocker. It did bring my bp and hr down but I never felt "good" on it; it made me feel less bad whenever I would overdue it physically but I would never feel as good or alert as I didn when I was off it. It ended up being a medication I didn't stick with. Quote Link to comment Share on other sites More sharing options...
Stephanieann Posted August 14, 2016 Report Share Posted August 14, 2016 I just started propranolol last week. I do love that it lowers my adrenaline rushes and keeps my heart rate in the 90s, sometimes less when standing. I am having so much more fatigue though, but who knows its the propranolol or the other million drugs I started. Beta blockers do cause fatigue and the other side effects you're experiencing. ..so much experimenting. Hopefully you can find a good fit for you. Quote Link to comment Share on other sites More sharing options...
Kaitlyn Posted August 14, 2016 Report Share Posted August 14, 2016 I have POTS and IST. Even on a BB I have symptoms of shortness of breath, palpitations, shakiness etc as though I had tachy even if I don't at the time. I have heard this is normal particularly for IST. RE: ivabradine. I checked that out recently and am pretty sure that it is contraindicated for folks with low BP. Just throwing that out there. Are you checking your vitals when you are sitting and standing and having the shortness of breath and muscle weakness? kaitlyn Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted August 15, 2016 Report Share Posted August 15, 2016 My daughter tried propanolol for a few weeks. It did lower her heart rate, which we thought was good, but what we were missing in the beginning was the fact that when she stood up, her bp dropped dramatically as well as keeping the heart rate lower. She doesn't usually have fluctuations to speak of in her bp, it's only the hr. We also thought it was making her headaches worse. Also couldn't take midodrine because of the headache issue, but that did give her more energy. Quote Link to comment Share on other sites More sharing options...
Nijn Posted August 15, 2016 Author Report Share Posted August 15, 2016 @Katybug I don't know if I have MCAS and as I understand it it's very hard to diagnose (or even impossible where I live if I'm not mistaken!) but I definitely have symptoms of it... Thank you for that heads-up - I don't have asthma and on this dose I thought my shortness of breath couldn't have anything to do with the propranolol but I hadn't thought about that issue... @statesof yes that sounds a bit like how it feels for me too! @Stephanieann the adrenalin thing is what I like about it too... If this turns out not to be a good fit for me, I really hope there's another med out there with the same effect but without these side effects! I haven't checked my blood pressure while having these symptoms @Kaitlyn, because at that point I'm so eager to lie down again but good point :). I'll do that! According to my doctor Ivabradine should give the effect of a lower HR, without the drop in blood pressure, but maybe I understood him wrong - I'll check that again too :). @DizzyGirls that definitely is a good point and worth checking for me.. I've noticed that my bp fluctuates a lot more even while lying down since starting the propranolol. Mostly lower, but sometimes higher than my normal values too. Has your daughter found her right med yet? Thanks everyone, this is a huge help! X Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted August 15, 2016 Report Share Posted August 15, 2016 No. No right meds yet. Florinef at 0.1mg daily is a huge help, but other than that her life is a nightmare right now. Quote Link to comment Share on other sites More sharing options...
roxie Posted August 16, 2016 Report Share Posted August 16, 2016 I took propranalol but it didn't do much for me, was switched to metoprolol and have been trying to find the right dosage. I get the shortness of breath & shakiness you describe usually when my hr goes into the low-mid 60s. I've been blaming my hr & trying to find the right amount that my hr stays in the 70s but this has not been easy. It's either high or low. So do you guys think it may just be a side effect of the bb or my actial hr? Is it something I just learn to live with? Like others have said it's not something that makes me feel all better whether my hr is in the 60s or 70s it's like exchanging the bad feeling for a different not feeling all. Quote Link to comment Share on other sites More sharing options...
Nijn Posted August 16, 2016 Author Report Share Posted August 16, 2016 That's too bad @DizzyGirls I hope you'll find something that helps her soon! @roxie I don't know, but in any case my HR doesn't drop that low so I don't think it's the cause of my symptoms... I'ts weird though isn't it? I thought that I must surely feel better when my heart isn't racing all the time. And it is nice to not feel 'wired' constantly, but like you say it gets exchanged for something that doesn't feel good either.. Thank you for your input though! Quote Link to comment Share on other sites More sharing options...
corina Posted August 16, 2016 Report Share Posted August 16, 2016 Glad you got some answers Nijn! This is what I found on the "POTS-What Helps" page re Ivabradine: Ivabradine, a sinus node blocker, has reportedly helped some POTS patients experience less symptoms. Ivabradine is sometimes used as an alternative to beta-blockers because it results in heart rate reduction without vasodilation, sexual disturbances, ornegative inotropic effects. In bold is why it shouldn't lower heart rate. It seems to me this could be a fit for you! Quote Link to comment Share on other sites More sharing options...
Kaitlyn Posted August 16, 2016 Report Share Posted August 16, 2016 @roxie I know that it is not uncommon to have both POTS and IST. And also that IST can cause symptoms even when being treated and HR is normal. Not sure if the same is true for POTS. I just know that even on the BB and with my HR in the normal range (70-75/80) I still sometimes have the symptoms I had pre BB. It feels like I have tachycardia but I don't. It's strange. @Nijn Ivabradine might be an excellent choice for you - i would have no way of knowing. Here is the info I mentioned in an earlier post. This came right from the Ivabradine site. Corlanor is just another name for it. Not sure where your BP is but they are quoting here 90/50 as a contraindication. They also say it can raise BP so I find this very confusing and would be interested to see what your doc has to say. My BP would disqualify me based on this but I am going to discuss it at my next appointment because as @corina indicated it seems to be really helpful for some Potsies! Who Should Not Take Corlanor®? Do not take Corlanor® if: You have symptoms of heart failure that recently worsened You have low blood pressure (less than 90/50 mm Hg) You have a certain heart condition called sick sinus syndrome, sinoatrial block, or 3rd-degree atrioventricular block You have a slow resting heart rate (less than 60 beats per minute) before treatment with Corlanor® You are allergic to ivabradine or any of the ingredients in Corlanor®. See end of the Medication Guide for a complete list of ingredients in Corlanor® You are taking medicines that can change how much Corlanor® gets into your body after it is swallowed. Your doctor can advise you if you are taking a medicine that should not be used with Corlanor® Quote Link to comment Share on other sites More sharing options...
roxie Posted August 17, 2016 Report Share Posted August 17, 2016 @Kaitlyn I've wondered before if I had IST but I've had work ups by a cardiologist & countless EKGs & have never been told I had IST. There are times I thubj I have a slightly irregular best maybe pvc's but they've never been mentioned either. Quote Link to comment Share on other sites More sharing options...
Nijn Posted August 17, 2016 Author Report Share Posted August 17, 2016 Thank you @corina! That definitely sounds like it's worth the try @Kaitlyn thank you for your explanation, that's good to know! I'm lucky that my blood pressure isn't that low, so I guess it would be safe for me to give it a try :). Interested to hear what your doctor will say about it! I always start on an extremely low dose with everything, because my body can react really badly to meds sometimes. That makes me feel a little more safe :). Quote Link to comment Share on other sites More sharing options...
Kaitlyn Posted August 18, 2016 Report Share Posted August 18, 2016 @roxie when I was diagnosed with IST I was surprised. My EP/cardio never even said anything he just added it to my list. But there was other stuff going on. He had done a carotid massage and on the left side I almost lost consciousness so that was a bit of a distraction ? So I can't really say what exactly prompted him to that diagnosis. I don't think they always catch everything - they only catch a moment in time. @Nijn Always a good way to go for me too! Starting with small doses ? Good luck! Quote Link to comment Share on other sites More sharing options...
roxie Posted August 18, 2016 Report Share Posted August 18, 2016 @Kaitlyn did he ever talk to you about it? I don't see the cardio anymore o switched to a more general Dysautonomia specialist so I can't ask the cardio. I can look at my patient portal but that's about all. Calling his staff would be no use. Quote Link to comment Share on other sites More sharing options...
Kaitlyn Posted August 19, 2016 Report Share Posted August 19, 2016 @roxie he didn't. And it seems strange in hindsight. But after I saw it on my discharge papers and looked it up I saw that it was pretty commonly diagnosed with POTS and it wasn't serious as far as 'heart disease'. Then we were busy trying to get my BP out of the danger zone and the IST wasn't on the forefront. I may bring it up at my next appointment just for clarification. I would also like to know if it is the IST alone or POTS both causing the continuing symptoms even on the BB. Can you make an appointment with a cardio? Do you feel you need more clarification of your symptoms? It's possible your Dysautonomia specialist might be able to answer some general questions although probably not specific cardio questions. Quote Link to comment Share on other sites More sharing options...
roxie Posted August 19, 2016 Report Share Posted August 19, 2016 @Kaitlyn I think I'll ask my dysautonomia dr first & see what he says. He just easier to talk to. See what he says & go from there. I tried to log into my old cardio's patient portal but it may have been deleted ?! Quote Link to comment Share on other sites More sharing options...
Kaitlyn Posted August 19, 2016 Report Share Posted August 19, 2016 Good luck! Keep us updated if you don't mind ? Quote Link to comment Share on other sites More sharing options...
green Posted August 23, 2016 Report Share Posted August 23, 2016 propranolol doesn't do much for me. Sometimes it seems to calm me down a little bit. I don't like to take drugs if I don't have to. I hope you feel better soon. Quote Link to comment Share on other sites More sharing options...
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