r/POTS • u/Golden_foxhat • 8h ago
Medication Starting ivabridine soon, anything I should know?
So after pushing for the doctors to look into POTS for years I finally am able to start medication, I know alot of people here have tried it so is there anything I need to know?
The main thing I worry about is that it will reduce my heartrate (good ofc) but at night my heart often goes from 40-60 and I'm scared it might go lower then that... any advice would be nice or share your own experiences
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u/Time_Olive6735 6h ago
I felt the most energy I've felt in 8 months a day after I started. I have actually been able to get out of bed! It's so worth a try.
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u/gardenvariety_ 1h ago
Wow I feel like I barely ever see anyone say it helped their energy
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u/Time_Olive6735 40m ago
Well my HR was about 135 every single time I stood up and now it still goes up by 30 bpm but doesn't really break 100-110, so if I'm not constantly on a treadmill I guess I have more energy for life. I'm also 56 and have had MS for 21 years so I guess it's all relative. My idea of energy has been already screwed up for a long time so my bar is low. If I can get out of bed I'm stoked. I won't be doing any HIIT classes or anything. Plus I'm a tough old bird! It feels so damn good to be able to stand up! I think I'm in the honeymoon phase.
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u/Lost-Place-4080 POTS 7h ago
I felt extra fatigue the first few days taking it, which is a side effect. I take one in the morning and one at night. I use visible, and about 5 months after increasing my doses my heart rate was too low overnight, so I take a larger dose in the morning and a smaller dose at night now.
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u/Golden_foxhat 7h ago
How low is too low? My fitbit alerts me when its below 50 which it does most nights...that's what I'm scared about is if it goes lower then that lol
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u/Lost-Place-4080 POTS 7h ago
My doctor told me that consistently in the 40s overnight was too low for me. I would check with your doctor what their parameters would be for you. It might be different person to person!
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u/Griffrose 4h ago
It’s supposed to lower your HR that’s the point of the medication. As most of us don’t have heart conditions then the medication will lower our resting rate when we sleep, from what everyone has said their Cardiologists say that so long as your not experiencing any symptoms from the low hr at night time then there is no concern, my pharmacist said the same thing and in their view the medication is just working as intended, mine goes down to about 40-42BPM at nighttime.
If you were having symptoms or anxiety’s about nighttime HR then speak to your doctor sometimes they reduce your evening does especially if your not as active <3
Ivabradine can take anywhere from a day to a couple of months to work fully in your system it varies person to person so give it time :)
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u/Golden_foxhat 2h ago
Ah okay thank you so much! I did mention it to my doctor but she misunderstood what I was saying. But I'm willing to try it out
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u/Agitated_Economics52 8h ago
Hi, First of all amazing that you are getting care.
I Personaly only take ivabradin in the morning. I would suggest you also start with that and like try it for a week and look at how your heart rate is throughout the day and if you notice it goes up in the evening at a time which you still needed to go lower, I would suggest you try to take it midday and not in the evening and like play around with the time you take it in midday to see when you have to take it so that it wears off once you get to sleep I think you can also google the how life is of the Tablett I don’t know it from my head so you could calculate that when you should take it.
Sorry for the bad grammar English is not my first language
Also regarding the medication, not in regards of heart rate, but don’t be surprised if you see like wondering pictures in the evening because it’s a known side effect of this medication that you get like light sensitive in a way I also have it in the evening still, it should go away within a few weeks with most most people for me at state, and once it gets dark, my eyes have problems with the light, not in a very annoying way, but you will notice like if you wonder with your eyes, the picture will follow it a little bit
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u/Golden_foxhat 8h ago
I was reccomend to take one in the morning and one at night, I'm not sure if that's standard but I suffer pretty badly with POTS affects. Thank you for the warning about the light stuff
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u/Agitated_Economics52 8h ago
The thing is if your heart is that lower or constantly that low in your sleep, then it’s a different story then you shouldn’t take it right before going to sleep or like a few hours before you should take it midday because that could get worrying. I would say you can also Google it because there is a standard for people with low heart rates while they’re asleep and that they shouldn’t take it at night because it could go dangerously low not to make you scared or anything. I just want the best for you because it’s still the medication and it will do what it has to do.
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u/Agitated_Economics52 8h ago
I just asked Ai sorry I don’t have energy to Google it right now, but this is the answer
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u/b_boop 7h ago
It slows down your eye muscles the same as your heart so can cause weird flashing, trails or double/triple vision with bright lights at night. I had no idea this was a thing and convinced myself it was a brain tumour!