Transcription
Hi! I'm going to be doing something a little bit different today. I'm going to be talking about my experiences with a medication for all of the conditions that I have. The condition is postural orthostatic tachycardia syndrome, and the medication is ivabradine. The response that I've had from taking it is so amazing that I just really wanted to share it with some people who are going through a similar thing and hopefully give them some hope that there are really good options and treatments out there.
In February of this year, so it's currently July, I started taking ivabradine. I was under a new doctor, my POTS doctor, who is based at King's College Hospital. He's now based at my local hospital, which is the Princess Royal in Bromley. I started taking ivabradine at King's; I had to go in to have a trial because using ivabradine for POTS is a very off-label use. Ivabradine is an antiarrhythmic drug, so it slows down your heart rate, but it was designed to treat stable angina pectoris. It's not designed for POTS at all; in mind, it's designed mainly for elderly patients who are having problems with their circulation and their heart because of illnesses linked to old age.
Previously to that, I was taking beta blockers. I had been taking beta blockers for about 18 months because my first misdiagnosis was supraventricular tachycardia. Big words! I definitely don't have that; I know that now. I don't know why my initial cardiologist felt that following my 24-hour ECG that I had SVT. It's a lot more commonly diagnosed in young people than POTS, so I guess that's why she thought.
My cat is in the background, chillin'. Yes, so I was given beta blockers, which was wrong, but I carried on taking them because it did help slow my heart rate down. I wasn't getting such severe tachycardia, and a few times that I came off them in order to have tests, like my tilt test, I was completely destroyed. I couldn't do anything. I was already quite disabled taking beta blockers, and I think it made my blood pressure issues a lot worse because beta blockers lower your blood pressure as well. A lot of beta blockers, including the one I was taking, are used for patients with hypertension, so for someone who's already got low blood pressure, they can be quite damaging. But it was kind of like the best of a bad situation because we still didn't quite know what was wrong with me, and I had no idea that, in fact, things like ivabradine even existed.
Beta blockers act on the beta receptor that responds to stress hormones like adrenaline, so they slow your heart rate down by changing how your body responds to these hormones. Beta blockers can make you quite relaxed as well. I was taking a very, very low dose because I am very sensitive to medication, so I was only taking 1.25 milligrams a day, and that was enough to stop me from passing out on a very, very regular basis and being completely immobile. So I didn't get any of the kind of anti-anxiety benefits from it; it just kind of, you know, was getting me through a really bad situation. I really think that they were making some symptoms a lot worse, like fatigue and my dizziness. Also, I had quite bad tinnitus as well.
Ivabradine is completely different because, well, it's an antiarrhythmic drug, so it slows your heart rate down. It doesn't work by changing how your body responds to stress hormones; it works on the funny channel, which is a really not well-understood electrical circuit in your heart. I'm not a medical student, so if I'm kind of bumbling through this a little bit, please excuse me, and if anyone knows more about this, please feel free to correct me on anything. This is just what I understand from my own research. But from what I know, the funny channel is a circuit in your heart that has nothing to do with stress hormones. It kind of controls the heart rate in spontaneously active areas of the heart, not areas that are responding to other things that are going on in the body. The only other part of your body that has a similar electrical signal is your eyes, which is why a lot of the side effects with ivabradine are to do with eyesight, like blurry vision. The most common side effect is luminosity, so if you walk into a room, you'll have a really bright field of vision for a few moments, and then that will fade away. A lot of the side effects are to do with the eyes because of the similarity between the electric circuit in your eyes and the one in your heart.
The brilliant thing about ivabradine is that because it's working on a completely different electrical circuit in order to slow down your heart rate, it doesn't change your blood pressure. It has pretty much very little effect on your blood pressure compared to beta blockers, which are known to lower your blood pressure. It's also a really new medication; I'm not quite sure how long it's been licensed, but it's not a very long time. Not that much is known about the long-term effects of it, whereas beta blockers have been around for ages and ages, but you know, it has gone through full clinical trials and everything.
I was quite nervous about taking ivabradine because in my history of taking medication, I always get side effects, usually quite badly. I was in a lot better place physically because I worked really, really hard on the kind of lifestyle changes aspect of POTS, which I will talk about in another video, but now I just want to focus on the medication. My experience of taking medication with POTS had not really been brilliant up to that point. My POTS doctor told me that it's amazing and all of his patients loved it, so I had an idea that it could be really good, but at the same time, I didn't really want to set my hopes up because I also knew that there had been a few patients who had really bad side effects and were not able to carry on taking it for that reason. I was quite nervous about how it might affect me, particularly the fact that most of the side effects had to do with your eyesight. One of my greatest fears, I'm sure for many people, is losing my vision. I'm terrified of the idea of that, especially as I already don't have the best vision to begin with.
They kept me in for a day just to make sure that I didn't have any sort of allergic reactions or severe reactions to the medication, but they checked my vitals before and after taking it. Everything was fine; my heart rate did slow down quite a lot. It got into the low 60s, and I left the hospital and went out for lunch with my friends and my husband, who came in with me, which was really sweet of him. Oh, it was on Valentine's Day! I spent most of Valentine's Day in the hospital, but you know, such is life. Initially, everything felt okay. I did notice that my vision was a lot brighter than it normally was, but it wasn't anything really upsetting. When I have very low blood pressure, I get sparkly light in my vision anyway, so that is something I'm quite used to. I wasn't that worried about that.
I started taking the usual dose, or the dose that they will start you off with, which is 7.5 milligrams a day, split into three doses. I was told to take that at intervals of about four hours. At the same time, I was told to go completely cold turkey on my beta blocker, which is called bisoprolol, and I think that was the problem for me because the changeover was not smooth. The first day I started taking ivabradine, I felt okay. The second day, I was feeling okay; I didn't feel amazing, but I didn't feel terrible. By the third day, I started to get very sick very quickly. I could feel that my heart was not coping very well, and I could feel the kind of symptoms that I get when I come off my beta blocker start to creep back up. I was able to walk much longer distances by that point because I had made a lot of lifestyle changes over the course of about nine months, so I could walk long distances, but I was struggling. I wasn't letting myself black out because I was getting enough warning to sit down, but I was finding myself having to sit down really, really regularly, and I just could feel my condition deteriorate. Given that I'd worked so hard to get it back, that was quite scary.
The problem was that ivabradine, unlike most medications, doesn't really start working straight away. The beta blocker that I had been taking for 18 months, I was kind of getting not withdrawal symptoms but side effects from stopping taking that at the same time as taking a new drug that wouldn't be as effective in the first week or so of taking it. So I went back to my GP, and he set up a plan for me to wean off the bisoprolol gradually. I started taking it every day as well as the ivabradine for about three or four days, and then I took it every other day because bisoprolol lasts a longer time in your body, I think up to 24 hours or more, maybe 48. He might have said, actually, whereas ivabradine seems to last around seven hours. I'll get onto that later. So you can see that, you know, I was told to take it maybe every four hours, but actually, I find that seven hours is how long it seems to last in me.
I started to feel a little bit more settled; I was able to carry on with my exercises. Then, after about a week and a half, the ivabradine kicked in finally. I had read myself off the bisoprolol by that point, but as soon as I felt the ivabradine was really kicking in, I felt my heart was doing well. It was too slow, way too slow, and I was quite bradycardic the whole time, which means my heart was beating under 60 beats a minute. Even when I was standing, it was in the 50s. At night, it was getting very, very low. I was getting vertigo, and I constantly felt unbalanced and nauseous. It's a very different sort of dizziness from the one you get from POTS. With POTS, it's kind of like an absence of sensation in your brain; it's kind of like an absence of awareness, this kind of cloud feeling, but it's very much cognitive. Whereas the balance or vertigo sort of dizziness was about what my body was doing, not what my brain was doing. It was like the signals between what my body was doing, where my hands were moving, and when my feet were moving; it just wasn't going up to my brain in the right way. I really feel for people who have vertigo on a regular basis because I've had mild vertigo before, but this was pretty severe. If I sat up or stood up or walked, it felt like I was on a ship the whole time. It was kind of debilitating in a very different way.
I wasn't surprised because I know I'm really sensitive to medication, and since I was getting the slow heart rate, I thought, well, maybe the ivabradine dose that I'm taking is too strong for me. So I called up the arrhythmia nurses, and they said that I should reduce my dose to five milligrams a day, so I'd be taking two doses a day instead of three and leaving a longer gap. In doing that, everything got better, and I was fine. I think those symptoms that I felt in the first couple of weeks of taking it and it started to work were definitely because it was too effective. My resting heart rate is normally around the 70s; with ivabradine, it's definitely in the 60s, so it's really effective for me. It does slow my heart rate down a lot. Sometimes I only need to take one tablet a day if I'm not going to be very active, so I would just take one in the morning, and by the afternoon, I've had enough fluids and salt that I'm actually able to do a lot more.
I haven't had that many visual side effects, I can honestly say. I've had very few other side effects, which is really weird for me because I am like the side effect queen, and it's actually given me a new lease of life, which I never had before. I've been able to start planning my future, and before taking ivabradine, I couldn't really see what my future would be because although I had improved a lot, I was still quite sick. I was fainting a lot, and now I haven't fainted at all. I have very little dizziness compared to what I used to have because I think that my blood pressure is a lot more stable now. I've noticed that when my heart beats, it feels very efficient. It's the only way I can describe it, but it feels like it's doing something. Whereas on bisoprolol and when I was unmedicated, it felt like it was beating really fast; it was kind of flopping around, and it was like, "Oh, I don't know what I'm doing." So now it kind of has a nice, firm beat to it, but my blood pressure isn't high at all; it's kind of like on the low end of normal now, so that's good.
I've read that ivabradine is a cardiotonic agent, which means that it helps your heart to beat more efficiently, so maybe that's why I've noticed that I just feel like my whole circulation is a lot more efficient now on it than it used to be. I get less blood pooling in my legs, and I've just felt so much better in myself. I have a lot more energy; I can do a lot more during the day. It is the best drug I've ever taken, and the few times that I haven't taken it by mistake, I can feel in my body that I forgot to take my medication because the feeling of my body not working or being in balance starts to come back. I do still have good days and bad days, and I always will, especially the time of the month is a big one, and the fact that the reason I have POTS is because I have another chronic illness, which is Ehlers-Danlos syndrome, hypermobility type, so that is something I have to deal with as well.
But for me, the pain from the EDS was never as bad as the effect that I had from being so disabled by POTS. I know that it's going to always be really hard, and I don't know what the future is going to hold for me, particularly things like pregnancy, whether I'll be able to carry on taking ivabradine while I'm pregnant. But overall, it's the best drug I've ever taken. I think having a medication that slows my heart rate down works really well for me, so I haven't had to think too much about midodrine or fludrocortisone. I'm not sure whether all doctors would be comfortable prescribing it. My doctor is part of the NHS in England; I'm not quite sure what the availability of ivabradine is like in the US or other countries. That's something to find out from your own doctors, but over here, I think from the sound of it, it's becoming more commonly used to help people with POTS, and maybe it could help you as well.
I will be doing a more in-depth video about how I developed POTS and also the link to Ehlers-Danlos syndrome, hypermobility type, and the lifestyle changes that I've made because while the medication has been really important, the lifestyle changes are also really, really important as well. So I'll be back very soon to talk a little bit more about those things, but I really hope you enjoyed watching this and that you got something from it. Please feel free to message me if you want someone to talk to. You know I have been there, so if you want to message me or leave me a comment, then please do, and I will definitely get back to you very soon. Take care, all the best, and I hope to see you next time. Bye!