aelizabeth3300 Posted March 8, 2019 Report Share Posted March 8, 2019 Hi, everybody. I'm new to this forum and this is my first post. I was recently diagnosed with hyper-POTS. I have been slowly getting worse since my diagnosis, and it's making me nervous. I'm not getting much support from my doctors, and the people around me don't know how to help, so I wanted to speak to others that have this form of POTS. I was originally prescribed propranolol (a beta blocker) to keep my adrenaline storms in check, but they found I also have a second degree AV block (type I) and that beta blockers can worsen that. They prescribed me Ivabradine instead, and the warnings have me worried. I wanted to know if anyone on here has taken Ivabradine for this form of POTS. How did it work for you? What were the side effects like? Did it decrease your heart rate drastically? Also, if anyone has been diagnosed with both hyper-POTS and an AV block, how do you best manage your symptoms? Thank you guys! Quote Link to comment Share on other sites More sharing options...
p8d Posted March 8, 2019 Report Share Posted March 8, 2019 I took it for awhile, it did help the HR as long as I was hydrated. It doesn’t do anything for the hyper part though. You need an alpha blocker for that, colony/methyldopa are the two most commonly used. I don’t have an AV block that I know of though so... Quote Link to comment Share on other sites More sharing options...
jklass44 Posted March 8, 2019 Report Share Posted March 8, 2019 3 hours ago, aelizabeth3300 said: Hi, everybody. I'm new to this forum and this is my first post. I was recently diagnosed with hyper-POTS. I have been slowly getting worse since my diagnosis, and it's making me nervous. I'm not getting much support from my doctors, and the people around me don't know how to help, so I wanted to speak to others that have this form of POTS. I was originally prescribed propranolol (a beta blocker) to keep my adrenaline storms in check, but they found I also have a second degree AV block (type I) and that beta blockers can worsen that. They prescribed me Ivabradine instead, and the warnings have me worried. I wanted to know if anyone on here has taken Ivabradine for this form of POTS. How did it work for you? What were the side effects like? Did it decrease your heart rate drastically? Also, if anyone has been diagnosed with both hyper-POTS and an AV block, how do you best manage your symptoms? Thank you guys! Welcome to the forum, I’m sorry to hear about your symptoms! I have hyperPOTS as well and was first tried on I think 6 different beta-blockers. I had drastic side effects on all of them, but I don’t have AV block that I know of. Ive been on Ivabradine since late summer of last year. I started off with 2.5mg twice a day, went up to 5mg which had my HR in the 40s consistently and I felt like crap, so dropped down to 3.75mg and I feel much better. My resting HR is pretty much normal now, however I do still have to limit myself when it comes to activities otherwise it will jump up to 120-180 (depending on the activity and how long I’ve been upright, so this is at least something I can control). The only symptom I’ve had being on this medication is the weird halo affect around lights, but it only happens at night time so it’s not a huge deal for me. And Ivabradine does nothing for BP though so I take Clonidine for that. How long ago were you prescribed Ivabradine? Have you started it yet? Quote Link to comment Share on other sites More sharing options...
aelizabeth3300 Posted March 8, 2019 Author Report Share Posted March 8, 2019 Just now, jklass44 said: Welcome to the forum, I’m sorry to hear about your symptoms! I have hyperPOTS as well and was first tried on I think 6 different beta-blockers. I had drastic side effects on all of them, but I don’t have AV block that I know of. Ive been on Ivabradine since late summer of last year. I started off with 2.5mg twice a day, went up to 5mg which had my HR in the 40s consistently and I felt like crap, so dropped down to 3.75mg and I feel much better. My resting HR is pretty much normal now, however I do still have to limit myself when it comes to activities otherwise it will jump up to 120-180 (depending on the activity and how long I’ve been upright, so this is at least something I can control). The only symptom I’ve had being on this medication is the weird halo affect around lights, but it only happens at night time so it’s not a huge deal for me. And Ivabradine does nothing for BP though so I take Clonidine for that. How long ago were you prescribed Ivabradine? Have you started it yet? I was prescribed about 3 weeks ago, but since it's not approved for treating POTS in the US, my doctors have to jump through hoops to get it approved through my insurance. However, both my pharmacy and my doctor are being absolutely awful about this - not returning my phone calls and not communicating with each other - so I haven't even been able to fill my prescription. I stopped taking my beta blockers initially, but I ended up in the ER last Tuesday with a HR of 150+ and what felt like trembling in my chest. After that, I restarted the beta blockers just to keep my HR down. The main thing I'm worried about is apparently my HR when I sleep gets down to 30s, and I worry the ivabradine will make it worse, potentially dangerous. Quote Link to comment Share on other sites More sharing options...
jklass44 Posted March 9, 2019 Report Share Posted March 9, 2019 1 hour ago, aelizabeth3300 said: I was prescribed about 3 weeks ago, but since it's not approved for treating POTS in the US, my doctors have to jump through hoops to get it approved through my insurance. However, both my pharmacy and my doctor are being absolutely awful about this - not returning my phone calls and not communicating with each other - so I haven't even been able to fill my prescription. I stopped taking my beta blockers initially, but I ended up in the ER last Tuesday with a HR of 150+ and what felt like trembling in my chest. After that, I restarted the beta blockers just to keep my HR down. The main thing I'm worried about is apparently my HR when I sleep gets down to 30s, and I worry the ivabradine will make it worse, potentially dangerous. If the beta blocker isn’t working for you, or if you shouldn’t be on it because of your AV block, I would suggest at least trying the Ivabradine. It may work well for you! And as far as I know, I don’t think there are any drugs approved for treating POTS... As for your bradycardia at night, maybe just a small dose in the morning only will be beneficial? But of course talk with your doctor about dosages! Quote Link to comment Share on other sites More sharing options...
aelizabeth3300 Posted March 9, 2019 Author Report Share Posted March 9, 2019 1 hour ago, jklass44 said: If the beta blocker isn’t working for you, or if you shouldn’t be on it because of your AV block, I would suggest at least trying the Ivabradine. It may work well for you! And as far as I know, I don’t think there are any drugs approved for treating POTS... As for your bradycardia at night, maybe just a small dose in the morning only will be beneficial? But of course talk with your doctor about dosages! I'm not sure about drugs approved for POTS, but ivabradine is only approved for heart failure in the US right now, so it's difficult to get insurance approval here. I am going to give it a shot, just the idea worries me. Since you have the hypo-POTS, I was wondering a few things about your symptoms. When you start feeling ill, what symptoms do you experience? Does salt intake and water help when the symptoms start? I've noticed that a quick (key-word quick) shower and laying down usually helps me feel better, but those only work for when I'm home. Sitting doesn't necessarily give me relief from my symptoms, and I was wondering ways I can relieve symptoms when I'm at work or school. I don't want to have to quit my job or school to be able to manage my symptoms, but when I get the adrenaline storms, I'm completely debilitated. My HR skyrockets to like 150+ when they hit. It gets super bad. Have you notived anything that prevents/stops these attacks other than meds? Quote Link to comment Share on other sites More sharing options...
jklass44 Posted March 9, 2019 Report Share Posted March 9, 2019 6 hours ago, aelizabeth3300 said: I'm not sure about drugs approved for POTS, but ivabradine is only approved for heart failure in the US right now, so it's difficult to get insurance approval here. I am going to give it a shot, just the idea worries me. Since you have the hypo-POTS, I was wondering a few things about your symptoms. When you start feeling ill, what symptoms do you experience? Does salt intake and water help when the symptoms start? I've noticed that a quick (key-word quick) shower and laying down usually helps me feel better, but those only work for when I'm home. Sitting doesn't necessarily give me relief from my symptoms, and I was wondering ways I can relieve symptoms when I'm at work or school. I don't want to have to quit my job or school to be able to manage my symptoms, but when I get the adrenaline storms, I'm completely debilitated. My HR skyrockets to like 150+ when they hit. It gets super bad. Have you notived anything that prevents/stops these attacks other than meds? I sent you a message! Quote Link to comment Share on other sites More sharing options...
Pistol Posted March 11, 2019 Report Share Posted March 11, 2019 @aelizabeth3300 - I have hyperPOTS and what helped me with the attacks when I was still working was retreating to a dark, quiet room and lying or sitting down and doing deep breathing. That was the only way I was - sometimes - able to stop the episodes and to prevent syncope or seizures ( an extreme reaction to adrenaline rush ). Also - in addition to cardiac meds - Lexapro helped. I have a sister that also has hyperPOTS and she does well on Wellbutrin. 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.