kalamazoo Posted February 9, 2017 Report Share Posted February 9, 2017 I've been on propranolol 30mg a day for about 3 years. But was recently prescribed ivabradine. My heart races so much and my blood pressure has been high lately but i am paranoid about medications and am scared to take it. I'm wondering how other people felt on it and what side effects are expected as well. Quote Link to comment Share on other sites More sharing options...
TCP Posted February 10, 2017 Report Share Posted February 10, 2017 Hi. I was on Propranolol for a year or so and it made my POTS and MCAS/MCAD worse. My BP went higher and I started to flush up more. I started on a low dose of Ivabradine just 2.5mgs per day in the evening for me after I have eaten, but some take it in the morning and evening. My HR has come down slightly and I feel less dizzy. I have tried three times to increase the dose and it upsets my gut too much. I will stay at 2.5mgs. I have read of many people doing well on it, so don't let my story say otherwise. It is supposed to have less side effects than many POTS meds and I know if I could tolerate it more, I would be doing better. I didn't get the white light thing that some people experience with their vision, which abates after a while. Good luck with it. Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted February 11, 2017 Report Share Posted February 11, 2017 I was only on it for a couple months prior to my pacemaker but it did make a big difference for me. Successful in bringing my heart rate down without sending my bp plummeting like other meds. I did have the vission disturbances but dealing with that nuisance was worth it for me. I was on 7.5 MG 2 x a day. Quote Link to comment Share on other sites More sharing options...
plaster89 Posted March 6, 2017 Report Share Posted March 6, 2017 I know this thread is a month old but I am taking Ivabradine for almost a year. I was previously taking bisoprolol and haven't tolerated it well. Ivabradine did help somehow, it did lower my HR and stabilised my symptoms. There are no miracles though. I also have had elevated BP on standing and it's still similar on this med. Are you taking it now? Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted March 6, 2017 Author Report Share Posted March 6, 2017 No, I decided against it, my blood pressure ranges a lot and get fairly elevated. 140/100ish, so I didn't feel a medication that would raise that would be good for me. I have started taking my propranolol 3x a day now though instead of 1 Quote Link to comment Share on other sites More sharing options...
plaster89 Posted March 6, 2017 Report Share Posted March 6, 2017 Is it helping you? I also can have 150/90 BP. That make me wonder that I may have hyperadrenergic POTS (though my feet and hands go bluish on standing very quickly, a clear sign of autonomic neuropathy) as my blood pressure goes up on standing and feel sympathetic drive all the team. Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted March 6, 2017 Author Report Share Posted March 6, 2017 I do have hyper pots, and yes it does help me. I also have a lot of anxiety and it curves it a lot. I can definitely feel the difference. It doesn't necessarily lower my heart rate a lot but I feel it keeps the spikes under control. I get less pounding in my head too. I have a lot of pooling issues in my hands and feet too, especially when I'm hot. Quote Link to comment Share on other sites More sharing options...
plaster89 Posted March 6, 2017 Report Share Posted March 6, 2017 It's good the medicine is working for you. I guess there is not much of a difference between Ivabradine and Propranolol. It controls what I call 'adrenaline surges' better and I also have less pounding. I often experience cold hands/feet while the rest of my body is pretty warm. It is accompanied by really elevated pupils. I guess this is heavily associated with circulation issues because it isn't happening when I am in bed for example. Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted March 6, 2017 Author Report Share Posted March 6, 2017 The way the medication works is different which is why I opted away from ivabradine. Propranolol works with adrenaline and ivabradine works with the heart (from my understanding) Do you have reynauds phenomenon by chance? I know that's common with hypo or normal pots iirc. Quote Link to comment Share on other sites More sharing options...
plaster89 Posted March 6, 2017 Report Share Posted March 6, 2017 You may be right, it's been some time since I was reading how these medicines function. My main is there wasn't a big difference in how I felt while taking them. Well, it is named acrocyanosis and I have it while sitting/standing only. Reynauds phenomenon is regardless of position, right? Maybe I just have two kinds of pots lol. Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted April 11, 2017 Report Share Posted April 11, 2017 Hi Kalamazoo, I have been reading your posts and that is really interesting about the inflammatory process indicated. I hope they look for and find what is causing it...possibly something autoimmune? Are your joints hyperflexible? I know no one looks forward to that, but at least you can get the right treatment to actually help your symptoms. Sending positive vibes! Quote Link to comment Share on other sites More sharing options...
Weyland Posted April 12, 2017 Report Share Posted April 12, 2017 I had high hopes for ivabradine . Did not work well for me . I felt more short of breath than I normally do ,and my heart didn't feel right. I've also tried propranolol ,and atenolol. Had bad side effects with both . The seach continues for me ..If you feel good on the propranolol ,just stay on it . The grass isn't always greener lol Quote Link to comment Share on other sites More sharing options...
Womble Posted April 14, 2017 Report Share Posted April 14, 2017 Ivabradine has been great for me, but I have low bp and couldn't tolerate beta blockers. I have been on 2.5 mg twice daily since last summer and my cardiologist has just raised it to 3.75 twice daily this week. The only side effect I've had was some visual sparkles, particularly when moving from dark to light, but they're only peripheral, don't affect my actual vision/sight and are actually quite pretty! Quote Link to comment Share on other sites More sharing options...
jagpots13 Posted April 14, 2017 Report Share Posted April 14, 2017 On 4/12/2017 at 6:54 PM, Bladerunner said: I had high hopes for ivabradine . Did not work well for me . I felt more short of breath than I normally do ,and my heart didn't feel right. I've also tried propranolol ,and atenolol. Had bad side effects with both . The seach continues for me ..If you feel good on the propranolol ,just stay on it . The grass isn't always greener lol I have been on propranolol ER about seven years now, 120 mg bid. I have recently had to double that and still have a resting heart rate of about 98. I still feel like I'm racing. And it's not really helping posture really that much anymore. I can feel my heart rate rise substantially again. I also take midodrine for low blood pressure. So far that is holding. I can't even lean down and my 63° house and pick anything up without going into full-blown pots mode again; sweating profusely, swelling, nausea, migraine etc. Much less go outside in this Mississippi heat. I almost immediately start throwing up and breathing is very hard. Was just curious about this drug now and any other possible new things that could help. Thank you guys so much for listening! Leslie Precht Quote Link to comment Share on other sites More sharing options...
Roxy Posted April 17, 2017 Report Share Posted April 17, 2017 I am on ivabradine 7.5 mg twice a day and it has helped tremendously, so far no bad stuff. Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted April 17, 2017 Author Report Share Posted April 17, 2017 What type of pots do you have Quote Link to comment Share on other sites More sharing options...
Roxy Posted April 17, 2017 Report Share Posted April 17, 2017 They are not sure yet because I have an adrenal gland mass and a pituitary lesion so both of those kind of mess up the blood work and other testing. Once they get those taken care of we will be able to hopefully figure out what one/kind I have. Quote Link to comment Share on other sites More sharing options...
momtokippy Posted June 22, 2017 Report Share Posted June 22, 2017 On 4/14/2017 at 2:46 PM, jagpots13 said: I have been on propranolol ER about seven years now, 120 mg bid. I have recently had to double that and still have a resting heart rate of about 98. I still feel like I'm racing. And it's not really helping posture really that much anymore. I can feel my heart rate rise substantially again. I also take midodrine for low blood pressure. So far that is holding. I can't even lean down and my 63° house and pick anything up without going into full-blown pots mode again; sweating profusely, swelling, nausea, migraine etc. Much less go outside in this Mississippi heat. I almost immediately start throwing up and breathing is very hard. Was just curious about this drug now and any other possible new things that could help. Thank you guys so much for listening! Leslie Precht It sounds like the propanolol does not work for you. That's a lot of propanolol and it can cause other side effects. Small amounts of propanolol lower heart rate while large amounts lower blood pressure more. You might not need that. Quote Link to comment Share on other sites More sharing options...
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