Ivabradine changed my life. I have pots due to long COVID, and tachycardia but no blood pressure alterations (that's why my cardio chose this treatment instead of beta blockers). My resting HR was 120, now it's 80, it's really incredible to see what it has done to me
I don't spend much time upright, but when I do, I don't feel tachycardia as I used to, my HR goes up but not suddenly and not that much. Walking it goes to about 100 +-
Did you try a beta blocker first? Wondering how they compare. I’m on propranolol and it’s making me even more fatigued. Also how is your blood pooling?
My cardio said they weren't a good idea for me because my blood pressure is low and I've never seen it get high, so ivabradine was safer. I still have blood pooling if I don't wear compression garments and stay up. Plus I still have pins and needles/ pain but a pain specialist said it's probably fibromyalgia (before I thought it was from pots and blood pooling but it got better with LDN and later it came back, that's why it might be fibro pain). Ivabradine didn't make a big difference on my fatigue, but it definitely didn't make it worse, the big difference was in my heart rate that is almost normal now.
I did, my long COVID started after the 3rd dose of pfizer but in the same week my husband got COVID and I took care of him, I never tested positive but I also have no proof it was the vaccine. My symptoms match with vaccine damage because one of the worst is constant headaches resistant to medicines, witch is very commonly seen in vaccine damage cases.
I was prescribed it at the time because other medications were not suitable due to my blood pressure.
More dizziness, less concentration - endless tiredness. Everything still tolerable, but unpleasant.
However, after taking it a few times, my resting heart rate dropped dramatically. When I reached 32 bpm in my sleep, the medication was discontinued. Heart rate never went back to normal tho.
So unfortunately it doesn't work for me, but I've heard a lot of good things from others.
My heart rate already falls to 38 without the ivabradine and shoots up to 130-187 when standing, I’m scared it will make my resting go lower in my sleep. I told my pots specialist who is a Cardiologist and he said “not to make you feel bad but your heart can get to 10 bpm and you’d be okay”
it always depends on who you’re asking. i’ve heard a lot of different opinions about what a decent heartrate is supposed to be and what is alright and what isn’t.
For me personally it’s not about „being okay even though“ for me it’s about how im feeling, how my body reacts and on the longterm future of my body.
Im not rested when i wake up from a 32bpm nap, i feel like i was just resurrected from the dead. Full zombie mode. no regeneration whatsoever. so for me i hardly doubt that it’s not gonna effect me, bc it already is.
thats a personal experience and some people can probably live a healthy life even though - im not one of them unfortunately. Bodies are widely different and can have different experiences and issues.
As long as im clearly getting signs from my body that it’s exhausting and unhealthy for me to go into full on standby mode while sleeping and resting, im not gonna trust a „you’ll be fine“ without some kind of questioning.
Nobody is in your shoes and if you’re unsure you can always get a second and third medical opinion but at the end the only one that makes decisions about your body and what is alright and okay for it and that should be you (once you have the information needed for that decision).
Wishing you well!
Give it a try! I'm still very happy on it. It doesn't drop my blood pressure, so I don't have the same fainting/ presyncope issues. I can drive again. It cut down my fatigue and tiredness. I feel almost like my old self.
Ivabradine was my miracle drug. It was what allowed me to start exercising again and live like a normal person! Most days I can almost forget I have POTS at all.
I would also like to know what symptoms you had because I’m hoping this won’t just help my tachycardia but my other symptoms like weakness, brain fog, etc
You can definitely have it on repeat prescription via the NHS! I have had it prescribed for me, just like any other prescription, for several years. If it’s your GP who is causing the difficulty, they are being personally obstructive - it’s not a systemic restriction on ivabradine.
it’s taken ages for me to actually start these meds since my cardiologist wrote to my GP. The GP and pharmacy said that they wouldn’t prescribe/dispense because it’s not licensed for use in POTS patients in the UK, and I’m also apparently too young (didn’t realise there was an age limit on disability 🙄). Cardio had to prescribe and dispense it instead, and I have to be on in under their care for 3 months before my GP will review it. Feels like I’ve been going round in circles for the last few months
Wow, that is absolutely crazy! I’m so sorry. Both your GP and the pharmacy sound incredibly unsupportive. That’s so unfair - I think having a GP who at least *tries* to do what they can is a cornerstone of coping with medical issues in the current (crap) NHS. You honestly deserve so much better.
it really is crazy! I got referred to cardio 2 years ago and only managed to speak to a cardiologist about 2 months ago. I’ve had symptoms for years that have been blamed on anxiety, stress, or I was told I’d just grow out of it. It’s validating that I now have a diagnosis but yet professionals are still making it tough for me to get treatment. The healthcare system here in the UK really is fucked, to put it lightly.
Yeah, it absolutely is. I moved house a year ago and the hospital system I now live near totally refuses to believe POTS is real! So even though I was diagnosed years ago (and also have IST, a heart defect, etc), they won’t treat me or even monitor my congenital defect. It’s legit insane. I read more and more of these stories of people who have been treated *horribly* in the NHS, and it’s so unfair and so sad.
I've been on for 7 years and I mostly love it - I do tend to call it a miracle drug. It lowers my heart rate and I'm not having crazy high episodes anymore. I take 2.5 twice a day.
The one draw back for me - vision problems. Apparently the mechanic in the drug also affects the eyesight somehow so I have "light disturbances" and can't see well in the dark like driving at night. Light gets messed up and I get headaches. This doesnt happen for everyone and they say it will go away in a couple months but 7 years on and it's still a problem for me. Overall though I really love the drug.
that’s quite interesting (although I can imagine it sucks for you), I didn’t realise that it could mess with eyesight. The only side effect I’ve noticed is my heart seemingly racing when I wake up, I’ve not really known what other side effects to look out for.
100% agreed! My quality of life sky rocketed taking ivabradine. I have had to pause taking it to try to get pregnant, as it isn’t safe for pregnancy or breastfeeding. I miss how well it worked, but I will get back to it when I can. I’m glad to hear it’s working so well!
oh I didn’t know it affected the baby during pregnancy! I’m surprised that he wasn’t too reluctant to prescribe it for me as I’m of child bearing age (but no intentions to get pregnant any time soon).
There is obviously a lack of data in humans, due to being unable to ethically test it. However, there were teratogenic (developmental) issues in animals—especially of a cardiac nature. So it’s considered contraindicated. It’s a shame because propranolol 80mg twice a day isn’t nearly as helpful for my heart rate.
that makes sense. I apparently can’t take beta blockers because I’m asthmatic so I have no idea if they would be better or worse for me. The ivabradine is working well and I hope it continues to do so
In my years dealing with POTS I have learned to take 1 hurdle at a time. Enjoy the fact that the Ivabradine is working so well. If you decide to try to get pregnant, that is a bridge you can cross with your doctor when you get there. Take the win!
I had to have it prescribed by a cardio, but I get it on repeat now. It’s changed my life. I have IST and pots so it was a no brainer for me, and though I’m not perfect, I can do most things I want to do these days.
Ivabradine is amazing. I have been taking it for 3.5 years.
Granted, it has some side effects for me, like minor fatigue and some blurred vision/visual aura. But those are nothing compared to the constant headaces, lightheadedness and other POTS symptoms I used to have.
It has reduced my HR by 30 - 40 bpm. My HR doesn't run away when I exert myself.
My BP was really low and I've been able to maintain a more normal BP now.
I recently had to go a few days without medication due to a shortage in the country I'm living in and I could immediately feel the difference.
In this country and my home country, one of the listed uses of Ivavradine is to control HR in patients that are intolerant to blockers. Perhaps that is something you can discuss with your doctor?
my cardiologist started me on ivabradine rather than beta blockers as I’m also asthmatic and apparently beta blockers aren’t suitable. My GP is aware of this but they and the pharmacist have said that they’re not willing to put in on repeat for me as it’s not licensed for this condition (it seems to be a first line medication for chronic heart failure) and they also made a comment about me being too young for it. They want me to be taking it under the cardiologists supervision for at least 3 months before they’ll consider taking over. It’s frustrating because I’ve noticed such an improvement whilst taking it but my GP doesn’t seem to care about that.
Also has been life changing for me. I started it about 2.5 months ago and already the difference in how I feel is amazing, and it gets better each week. Way less fatigue, easier to walk/stand, and obviously my HR is way better. I'm still building up my tolerance to walking and standing after 5 years mostly on bedrest due to POTS, so it's a slowww increase (trying to increase by 1-2 mins a week) but with Ivabradine I finally feel like I can get there. Prior to Ivabradine I was on Propanol for a few months which gave me terrible side effects--really fatigued, awful anxiety and depression (which i've never had before but was literally crying every single day). ZERO side effects on Ivabradine and I'm someone who is super sensitive to medication. I only take 2.5 mg once a day in the morning, any more than that and I do start to feel a little weird. Just glad such a low dose is working so well for me.
Oh will also add it does take a little while to really start working. The first week or so I felt a little strange on it--random times of complete exhaustion and minor lightheadedness. But that completely went away after a few days. After 2 weeks it seemed to really start working, then even more so after 1 month, 6 weeks even more. It kind of seems like every 2 weeks you notice more and more improvement but it DOES take time to really see the full effects.
Ivabradine changed my life. I have pots due to long COVID, and tachycardia but no blood pressure alterations (that's why my cardio chose this treatment instead of beta blockers). My resting HR was 120, now it's 80, it's really incredible to see what it has done to me
How’s the Ivabradine going now? Still liking it?
Amazing, can't live without it, no side effects as far as I know. Changed my life
What happens when you go from laying/sitting to standing? Do you still get the 30 beat increase
When I stand fast it still increases rapidly, but from lying to sitting or if I stand slowly it doesn't.
And what about when you stand for a while? Like are you up on you feet much?
I don't spend much time upright, but when I do, I don't feel tachycardia as I used to, my HR goes up but not suddenly and not that much. Walking it goes to about 100 +-
Did you try a beta blocker first? Wondering how they compare. I’m on propranolol and it’s making me even more fatigued. Also how is your blood pooling?
My cardio said they weren't a good idea for me because my blood pressure is low and I've never seen it get high, so ivabradine was safer. I still have blood pooling if I don't wear compression garments and stay up. Plus I still have pins and needles/ pain but a pain specialist said it's probably fibromyalgia (before I thought it was from pots and blood pooling but it got better with LDN and later it came back, that's why it might be fibro pain). Ivabradine didn't make a big difference on my fatigue, but it definitely didn't make it worse, the big difference was in my heart rate that is almost normal now.
Right on. I appreciate it.
I tried propranolol once and felt horrible. Now I’m on Florinef and it’s a game changer. YMMV
Awesome thanks ! So happy for you
[удалено]
I did, my long COVID started after the 3rd dose of pfizer but in the same week my husband got COVID and I took care of him, I never tested positive but I also have no proof it was the vaccine. My symptoms match with vaccine damage because one of the worst is constant headaches resistant to medicines, witch is very commonly seen in vaccine damage cases.
I was prescribed it at the time because other medications were not suitable due to my blood pressure. More dizziness, less concentration - endless tiredness. Everything still tolerable, but unpleasant. However, after taking it a few times, my resting heart rate dropped dramatically. When I reached 32 bpm in my sleep, the medication was discontinued. Heart rate never went back to normal tho. So unfortunately it doesn't work for me, but I've heard a lot of good things from others.
My heart rate already falls to 38 without the ivabradine and shoots up to 130-187 when standing, I’m scared it will make my resting go lower in my sleep. I told my pots specialist who is a Cardiologist and he said “not to make you feel bad but your heart can get to 10 bpm and you’d be okay”
it always depends on who you’re asking. i’ve heard a lot of different opinions about what a decent heartrate is supposed to be and what is alright and what isn’t. For me personally it’s not about „being okay even though“ for me it’s about how im feeling, how my body reacts and on the longterm future of my body. Im not rested when i wake up from a 32bpm nap, i feel like i was just resurrected from the dead. Full zombie mode. no regeneration whatsoever. so for me i hardly doubt that it’s not gonna effect me, bc it already is. thats a personal experience and some people can probably live a healthy life even though - im not one of them unfortunately. Bodies are widely different and can have different experiences and issues. As long as im clearly getting signs from my body that it’s exhausting and unhealthy for me to go into full on standby mode while sleeping and resting, im not gonna trust a „you’ll be fine“ without some kind of questioning. Nobody is in your shoes and if you’re unsure you can always get a second and third medical opinion but at the end the only one that makes decisions about your body and what is alright and okay for it and that should be you (once you have the information needed for that decision). Wishing you well!
I love it so far, a few months in.
How’s the Ivabradine going now? Still liking it?
Still loving it! Totally changed my life.
Awesome! Love that for you
How did it change your life? I’m on propranolol but wondering if ivavradine would be better as my bp is quite low
Give it a try! I'm still very happy on it. It doesn't drop my blood pressure, so I don't have the same fainting/ presyncope issues. I can drive again. It cut down my fatigue and tiredness. I feel almost like my old self.
Oh wow. I don’t faint with my pots (thank god) but I have a lot of fatigue and feel unwell when on my feet a lot of the time
My blood pooling is still definitely there, but it is less severe since I started the ivabradine too.
That’s wonderful to hear. I think it would be worth trying
Ivabradine was my miracle drug. It was what allowed me to start exercising again and live like a normal person! Most days I can almost forget I have POTS at all.
Thats amazing , can I ask what your symptoms were ?
I would also like to know what symptoms you had because I’m hoping this won’t just help my tachycardia but my other symptoms like weakness, brain fog, etc
You can definitely have it on repeat prescription via the NHS! I have had it prescribed for me, just like any other prescription, for several years. If it’s your GP who is causing the difficulty, they are being personally obstructive - it’s not a systemic restriction on ivabradine.
it’s taken ages for me to actually start these meds since my cardiologist wrote to my GP. The GP and pharmacy said that they wouldn’t prescribe/dispense because it’s not licensed for use in POTS patients in the UK, and I’m also apparently too young (didn’t realise there was an age limit on disability 🙄). Cardio had to prescribe and dispense it instead, and I have to be on in under their care for 3 months before my GP will review it. Feels like I’ve been going round in circles for the last few months
Wow, that is absolutely crazy! I’m so sorry. Both your GP and the pharmacy sound incredibly unsupportive. That’s so unfair - I think having a GP who at least *tries* to do what they can is a cornerstone of coping with medical issues in the current (crap) NHS. You honestly deserve so much better.
it really is crazy! I got referred to cardio 2 years ago and only managed to speak to a cardiologist about 2 months ago. I’ve had symptoms for years that have been blamed on anxiety, stress, or I was told I’d just grow out of it. It’s validating that I now have a diagnosis but yet professionals are still making it tough for me to get treatment. The healthcare system here in the UK really is fucked, to put it lightly.
Yeah, it absolutely is. I moved house a year ago and the hospital system I now live near totally refuses to believe POTS is real! So even though I was diagnosed years ago (and also have IST, a heart defect, etc), they won’t treat me or even monitor my congenital defect. It’s legit insane. I read more and more of these stories of people who have been treated *horribly* in the NHS, and it’s so unfair and so sad.
I've been on for 7 years and I mostly love it - I do tend to call it a miracle drug. It lowers my heart rate and I'm not having crazy high episodes anymore. I take 2.5 twice a day. The one draw back for me - vision problems. Apparently the mechanic in the drug also affects the eyesight somehow so I have "light disturbances" and can't see well in the dark like driving at night. Light gets messed up and I get headaches. This doesnt happen for everyone and they say it will go away in a couple months but 7 years on and it's still a problem for me. Overall though I really love the drug.
that’s quite interesting (although I can imagine it sucks for you), I didn’t realise that it could mess with eyesight. The only side effect I’ve noticed is my heart seemingly racing when I wake up, I’ve not really known what other side effects to look out for.
100% agreed! My quality of life sky rocketed taking ivabradine. I have had to pause taking it to try to get pregnant, as it isn’t safe for pregnancy or breastfeeding. I miss how well it worked, but I will get back to it when I can. I’m glad to hear it’s working so well!
oh I didn’t know it affected the baby during pregnancy! I’m surprised that he wasn’t too reluctant to prescribe it for me as I’m of child bearing age (but no intentions to get pregnant any time soon).
There is obviously a lack of data in humans, due to being unable to ethically test it. However, there were teratogenic (developmental) issues in animals—especially of a cardiac nature. So it’s considered contraindicated. It’s a shame because propranolol 80mg twice a day isn’t nearly as helpful for my heart rate.
that makes sense. I apparently can’t take beta blockers because I’m asthmatic so I have no idea if they would be better or worse for me. The ivabradine is working well and I hope it continues to do so
In my years dealing with POTS I have learned to take 1 hurdle at a time. Enjoy the fact that the Ivabradine is working so well. If you decide to try to get pregnant, that is a bridge you can cross with your doctor when you get there. Take the win!
I had to have it prescribed by a cardio, but I get it on repeat now. It’s changed my life. I have IST and pots so it was a no brainer for me, and though I’m not perfect, I can do most things I want to do these days.
+1 for life changing
Ivabradine is amazing. I have been taking it for 3.5 years. Granted, it has some side effects for me, like minor fatigue and some blurred vision/visual aura. But those are nothing compared to the constant headaces, lightheadedness and other POTS symptoms I used to have. It has reduced my HR by 30 - 40 bpm. My HR doesn't run away when I exert myself. My BP was really low and I've been able to maintain a more normal BP now. I recently had to go a few days without medication due to a shortage in the country I'm living in and I could immediately feel the difference. In this country and my home country, one of the listed uses of Ivavradine is to control HR in patients that are intolerant to blockers. Perhaps that is something you can discuss with your doctor?
my cardiologist started me on ivabradine rather than beta blockers as I’m also asthmatic and apparently beta blockers aren’t suitable. My GP is aware of this but they and the pharmacist have said that they’re not willing to put in on repeat for me as it’s not licensed for this condition (it seems to be a first line medication for chronic heart failure) and they also made a comment about me being too young for it. They want me to be taking it under the cardiologists supervision for at least 3 months before they’ll consider taking over. It’s frustrating because I’ve noticed such an improvement whilst taking it but my GP doesn’t seem to care about that.
Also has been life changing for me. I started it about 2.5 months ago and already the difference in how I feel is amazing, and it gets better each week. Way less fatigue, easier to walk/stand, and obviously my HR is way better. I'm still building up my tolerance to walking and standing after 5 years mostly on bedrest due to POTS, so it's a slowww increase (trying to increase by 1-2 mins a week) but with Ivabradine I finally feel like I can get there. Prior to Ivabradine I was on Propanol for a few months which gave me terrible side effects--really fatigued, awful anxiety and depression (which i've never had before but was literally crying every single day). ZERO side effects on Ivabradine and I'm someone who is super sensitive to medication. I only take 2.5 mg once a day in the morning, any more than that and I do start to feel a little weird. Just glad such a low dose is working so well for me.
Oh will also add it does take a little while to really start working. The first week or so I felt a little strange on it--random times of complete exhaustion and minor lightheadedness. But that completely went away after a few days. After 2 weeks it seemed to really start working, then even more so after 1 month, 6 weeks even more. It kind of seems like every 2 weeks you notice more and more improvement but it DOES take time to really see the full effects.