LindsayAfter trialing two new medications: midodrine and ivabradine/Corlanor, I intended to start by discussing the midodrine experience, as I tested it first. However, I just stopped the ivabradine yesterday, so I feel the need to write about it.
I’m guessing it’s obvious from the “I just stopped it yesterday” part that it didn’t go so well. I started ivabradine a little before Christmas and ended up being on it for almost a month. I stopped the beta blocker at the same time I started the ivabradine, essentially trading one heart medication for another. Ivabradine was great, so long as I didn’t run uphill. Or exercise. Or go out in public. Or talk. Or try to sleep.
Ivabradine is typically prescribed for heart failure. Unlike beta blockers, which reduce the heart rate by blocking epinephrine (adrenaline) and norepinephrine receptors, ivabradine reduces the heart rate by inhibiting the funny channel (that’s what it’s actually called). It is also often prescribed for angina-related chest pain.
For the first week, I took 2.5mg of ivabradine in the morning and another 2.5mg in the evening. At one point, I increased the dosage to 5mg in the morning and 2.5mg in the evening, but eventually I decreased the morning dosage back to 2.5mg due to low heart rates.
The most common side effect of ivabradine is vision issues, primarily temporary flashes of light or seeing halos when entering a bright room. I always get side effects from medication, so I was surprised that I did not experience any visual disturbances. Some POTSies I have talked with experienced the unusual visual effects, but most said they disappeared with time.
But here’s what I did experience with ivabradine: increased palpitations, higher variation in heart rates, higher variation in blood pressure, nausea, chest pain, increased muscle and joint pain.
And the adrenaline. Holy f***, the adrenaline.
For the past month my fists and jaw have always been clenched and my senses heightened. I am tense to the point of tremulousness. I wake up multiple times per night with an overwhelming adrenaline rush and tachycardia. I am in a nearly constant “fight or flight” state until I get too exhausted and fatigue takes over.
I had been dying to try ivabradine since it was first approved by the FDA in 2015. I spent two years slowly building my case, trying to convince my doctor to let me try it. I was patient, I played the long game because I thought it was going to be worth it. My post in an online POTS support group requesting personal experiences with ivabradine was met by positive response after positive response. Almost 90% of the responders credited ivabradine for giving them their lives back. A number of articles, including this one, suggest ivabradine is a good option for treating postural orthostatic tachycardia syndrome (POTS).
So, although I’m not usually a person of faith, I put all of my faith in ivabradine. This was it – this was The Drug. The One I Had Been Waiting For. It was going to give me My Life back. I was so certain that I stuck with it for 4 very long weeks, sifting through the shitty symptoms for any sign that things were getting better. Even the days where I was doubled over with localized left-sided chest pain, or where I had to physically restrain myself from fighting or flighting, I swore the ivabradine was going to work, if I just had faith and stuck with it long enough.
Even on the last day, where I nearly made the dreaded ER trip for chest pain and palpitations, after i had dropped 5lbs in 2 days from what i assume was a constant state of adrenaline/anxiety, I filled my pill organizer with a week’s worth of ivabradine. It’s almost like an abusive relationship, where even as you know it’s destroying you, you beg for more.
For the sake of clarity, I don’t think the ivabradine caused any of those symptoms, and they are not listed anywhere I have seen as potential side effects of the drug. I think those are lovely gifts from POTS, and the ivabradine wasn’t doing much to control them. I have been on the beta blocker so long I had forgotten, but ivabradine reminded me what I’m like without it: slightly low BP when sitting, slightly high when standing, pained, palpitating, and full of adrenaline.
I liked the dream of ivabradine. I enjoyed the hope it gave me. For a moment it felt like I had a fighting chance against this ridiculous illness, but my last weapon was just taken away and I’ve got too many kinks in my armor.
Now, as I measure out my next atenolol dosage, with no hope on the horizon, it feels like I haven’t made any advancement in the last six years. Tomorrow I will restart the atenolol. Today I’m just going to appreciate the adrenaline and chest pain and let my heart do its thing, without any drugs in my body. A one-day detox.
Except for all the heroin, naturally.
“We must accept finite disappointment but never lose infinite hope.” -Martin Luther King Jr.
If you have tried ivabradine, especially if you had a positive experience, please comment so I don’t scare future readers from trying it š
Smell ya later.
– Linds
I’m so sorry this didn’t help Linds. You must think ‘why me?’ when it’s been great for so many other people š I often think it’s fine if you have one disease to contend with, but when you have others (eg mast cell) it gets way complicated. If I had a pound for every time someone has said on my blog that this or that drug has helped them I’d be rich, yet I can’t tolerate any of the treatments they’ve tried – it’s so infuriating and disheartening and frustrating x
Yes! So many people with POTS talk about how great florinef is (made me very sick) or Corlanor (which as I mentioned in this post did little for me). I even seem to be sensitive to the ones I CAN take! It’s very disheartening. I know they’re doing more and more studies into POTS each year, but I feel like I’m left with more questions.
How did you do that? You managed to get into my brain and write about my experience with Ivabradine. I have had SFN and POTS for around 5 years and have tried just about everything available. I am fortunate that I live in the Nashville area and have been able to see doctors at the Vanderbilt Autonomic Dysfunction Center along with my regular doctors. I have tried all types of medications that many have used with great success. Some of those include Midodrine, Florinef, Modifinil, Pyridostigmine and Ivabradine. Each came with its own set of side effects. Like you, I held out the most hope for Ivabradine because of reading about the wonderful results from others. I also started on 2.5 mg, twice daily, and then titrated up to 5 mg. At first I thought that it did give me more energy and helped with my tachycardia. Like you, I never experienced any of the vision side effects. However, it did not take long for me to start feeling my heart beating so hard that at one time I thought a neighbor was outside hammering! I could hear it that loudly in my ears. My chest became very sore from the pounding of my heart. I was exhausted all of the time and it was Christmas. I then became very anxious because I felt like I wasnāt able to keep up. I wanted this drug to be ā the oneā, but it wasnāt. I gave it 6 weeks but it never got any better. So, I am now back on a very low dose of Propranolol and the smallest dose possible of Adderall to combat the brain fog. But, I still continue to hope that one of these days there will be a more helpful drug for me….and you, too!
Was there any discussion of tapering off the beta blocker, or did you hard stop? It seems like that may have contributed to your issues. Iāve been on beta blockers for seven years now, and my body is addicted. Your experience sounds like a classic beta blocker withdrawal, not necessarily the Ivabradine. (Just a thought!) hang in there – my body is so sensitive to adrenaline, even with the betablockers. :-/
That’s a great question. I was on approximately 6mg of atenolol (1/4 of a 25mg pill). For about a week prior to starting the Corlanor, I tried to cut the 6mg in 1/2 (so, 1/8 of a pill), but at that point it just crumbles because it’s so small, and I would take the crumbles. So, it probably was somewhere in the 1-4mg range per day. Then I stopped altogether and switched to the Corlanor.
It’s certainly possible that some of my symptoms could be attributed to beta blocker withdrawal, although the adrenaline was getting worse as the weeks went on.
have you found anything to help the adrenaline? what’s your BP like?
I’m sorry corlanor didn’t work for you. It didn’t work for me either, and I had terrible side effects. I know how it feels to have high hopes (especially for this drug in particular) and being let down can be heartbreaking. I hope you’re able to find the right meds to help with your POTS!
I’m so sorry it didn’t work for you either. What kind of side effects did you have?
I was super hypotensive, became really lightheaded, and my vision kept going black. My vision also rotated 90 degrees a couple of times, and other times it rotated but not quite as dramatically. It was like everything was just slightly tilted to the left.
wow, that’s scary! i’m sure I’ve asked you before, but do you take a beta blocker?
Yeah it was definitely not the drug for me! I’ve taken beta blockers in the past, but they’ve never worked for me. They also make me hypotensive, and the combo of low blood pressure and tachycardia is not fun. I’m still looking for a good drug to treat my heart issues, I was actually at the electrophysiologist today!
I have the same issue with beta blockers. My HR is slightly low naturally, but with even a small dose of a beta blocker it’s quite a bit lower. It also gives me bradycardia. I wish they could find better treatments for us!
I am so sorry it wasn’t the one. I am where you were before you started your trial. I am waiting for a new baseline autonomic test before I finally start IVIG. My hubs is certain this will be the one for me. I’m nervous and a little afraid of what happens if it’s all for nothing. Like you, I usually have every crazy that never happens side effect.
I will say that I am taking Midodrine. It’s made a world of difference for me. I also recently started taking Mestinon. Corrected problems I didn’t even know I had.
Thank you for continuing to blog. I understand how difficult it can be to even sit up sometimes. Heck, I can’t even remember how long ago I traded my laptop for an iPad. You have made a tremendous positive impact on my life with your blogging. Reminds me we are not aloneš
Thank you so much for your comment, it also helped me feel less alone š I took Mestinon a while back. It gave me more energy, but also (surprise, surprise) lots of side effects.
I totally understand what you’re saying about the IVIG. It could be great – it could be a game changer. And, for many people it has been. But, it’s so hard to get your hopes up for fear of disappointment. I live my life as a cynic – not because I’m a negative person, but because if I expect the worst, I either get exactly what I was expecting, or I’m pleasantly surprised. Much better than being disappointed. That’s the mistake I made with the Corlanor.
P.S. Do you read the http://www.lethargicsmiles.com blog? She provides detailed posts about her IVIG experiences.
Good luck with the IVIG! Please let me know how it goes!
Hi Linds,
I tried ivabradine when first in hospital being diagnosed because I wasnāt tolerate the beta blocker (was on too high dose Iām hindsight). I felt dizzy and weird vision and had adrenaline surges on it but I had taken propranolol for a few days prior so may have been rebound from that. I stopped the ivabradine and have never tried again because I need the adrenaline blocking action of the beta blocker.
I take the same atenolol as you 6mg and my drs say oh at that dose you should be able to just stop it not taper down….um no! Iāve tried and the rebound adrenaline usually kicks in a few days later so I end up back on it. Iāve always thought we are similar. I do manage 0.05 (half) a florinef pill but it took me a few failed attempts to get on that. In the end I started at an eighth of the pill, then quarter, then three quarters, then a half – took a few months to get to the half lol. I have tried going up higher this way but after about a week I get adrenaline surges and have to stay on half a pill only. Itās ridiculous….and Iāve tried 3 or 4 times. I canāt wait to hear your midi drone experience. I really hope this works for you!
Hi Jo,
As always, thanks for your input! When you end up going back on the beta blocker after being off it for a few days, do you experience any side effects (as if you had started the atenolol for the first time)?
Can I ask what happened during your failed florinef attempts?
You know, I feel like an idiot for not realizing this sooner. I know itās been awhile since Iāve worked, but Iām still a pharmacist and should remember these things! š¤¦š¼āāļø
Beta blockers should not be stopped cold turkey. The dose needs to be tapered down gradually to get your body used to all those beta receptors being unblocked. Thatās what caused your adrenaline surges and other symptoms- without the atenolol to block the receptors, all that available adrenaline was binding to the receptors (especially the beta-1 receptors on the heart) and making your heart go nuts. No wonder you felt so awful!
I would encourage you to try going off the atenolol again, but slowly. Try cutting your daily dose in half for a week, then go every other day for a week, then gradually stop. I think going with longer gaps between doses, rather than trying to make your already small doses any smaller than half might help you get off it. If you notice palpitations or adrenaline surges, you can always take a small dose to offset those symptoms and get the adrenaline to knock it off a bit. Hopefully that will gradually calm things down and then you can give the ivabradine a fair trial. Youāve pushed so long to get a chance to try it- donāt give up yet!
Please feel free to ask me other drug questions…again, Iām a licensed pharmacist in a hospital setting, so Iām a bit more familiar with certain side effects than a pharmacist in a retail setting. Good luck! šš»
Thank you!!! I very much appreciate your professional input. My cardiologist said I should experience withdrawals at such a small dose, but I feel like doctors don’t actually know that much about the medications they prescribe, so I hope you don’t mind if I ask you a couple questions!
Part of the problem is that I currently take 1/4 pill of the atenolol, which is really just a tiny crumb. When I try to cut that in 1/2, it crumbles. Is there a better way to do it? Should I just take a few of the small crumbles?
If I were to quit the beta blocker cold turkey, would the withdrawal symptoms eventually subside? If so, how long does that take?
Thanks again!
Thanks so much for sharing your experience! I’m also not loving how I feel on ivabradine. Tasks are taking longer, I’m dragging, having odd periods of absolute clarity then plunge into a dense fog, and everything is frustrating. My family members also just told me how horrible my memory and cognitive function has been since starting. Since the med is so new to the US, I haven’t been able to find many articles or experiences in dysautonomia patients. It’s good to hear that I’m not alone in feeling a bit odd on it.
I’m sorry to hear that! It seems to be a hit or miss drug for a lot of people. As you know, it wasn’t great for me, but I have a few friends that swear by it.
Were you on something else before the ivabradine?
You donāt have to stop your beta blocker if taking ivabradine. Ivabradine lowers heart rate only.
That’s true, but that’s the primary reason I take a beta blocker. My resting heart rate is already pretty low without medication. Taking both ivabradine and a beta blocker would drop it too low.
I have been on Corlanor for the last month with zero side effects. I can walk, drive, shop without any problems. It has literally given me my life back. I’m a lot older as I have secondary POTS that was triggered after Covid in February. I also have mild COPD. My cardiologist knew this was the perfect med & he was right. My problem is that Humana (Medicare) has denied the claim. Options?
That’s wonderful! I’m so happy to hear that it is working for you. I’m not sure where you are located, but if you are in the US, I have some friends who have also had difficulty getting their insurance to cover it. They get Corlanor from a Canadian pharmacy that mails it directly to you and have said the price is pretty reasonable. A prescription is still needed, but I think it’s pretty easy for your doctor to send that over.
Corlanor’s website also has a copay card that can significantly reduce the cost. I’m not sure if it works with Medicare, but might be worth checking out – https://www.corlanor.com/corlanor-copay-card/
Thank you. Yes, I’m in the States but the Corlanor copay card won’t help me because I am on Medicare. Some of the prices in Canada are much better than the USA copay. Even if Humana would approve it for me, my copay would be $485.00 per month, which is impossible. My only hope is if my doctor will release a prescription to me to be used in Canada. I can only hope he will before I have to go through withdrawal. Thank you for the advise.
Oh my goodness. I know this post is over 2 years old, but it so incredibly relevant for my current journey.
I first tried a beta blocker (propranalol) which I did not tolerate due to lowww BP (normally my BP is normal and great). Second I tried Mestinon. It gave me energy, but lots of side effects, just like one of the other commenters above. My third in line was Ivabradine. I am on week 8 of it, with my cardiologist follow up today. I hate this pill. Hate is a strong word, but when I put all of my hope into it prior to starting, and I received worse fatigue, weakness, SOB, palpitations, headaches, and blurry vision, it made me hate it.
I honestly hope she just puts me on Mestinon again, and Iāll deal with those side effects for the trade of mildly increased energy.
I would like IV fluids or IVIG, but she is not there yet (due to the risks), which I understand, but still want. Haha.
I was on Mestinon for a while, too. I remember having some side effects, so my cardiologist started me on a very low dose (I took the smallest pill and cut it in 1/4). I have a few POTS friends that started on an even lower dose by getting a special liquid form of Mestinon. But all of us found it increased energy, and all of us thought that starting on a very low dose and moving up in dosage very slowly was helpful.
I hope you find something that helps!
Try Prescription Hope. We applied there and even though we were over the income limit, they approved us. For $50/month the Corlanor comes in the mail directly from the manufacturer.
I know this is an older article but I just saw it and had to reply! I’ve had POTS for a long time and I’ve been taking Midodrine for years to raise my blood pressure and avoid syncope. My blood pressure would get down to 50/40 and I’d have fainting spells. I’m on 5mg 4x a day of Midodrine and it’s helped so much with the low BP. I’ve tried every beta blocker out there and it didn’t help my heart rate and lowered my pressure too much. My resting heart rate is 135 and above, reaching 175 beats per minute sitting down. My cardiologist has no idea what’s causing this constant tachycardia but I’m hoping Ivabradine helps. I’m on 2.5 2x a day and my resting heart rate is still in the 130s so I’m thinking I’m going to eventually be at the max dose of 7.5 mg a day. Just got to wait and see and hope Ivabradine is strong enough to work on me.
Wow, I’m sorry to hear you haven’t had any luck with beta blockers. I hope the ivabradine helps. How long have you been on it?
I know this is an old article, but you described my Ivabradine experience to a tee! I am only taking 2.5 once a day, and Iām wondering how you weaned off of it? I am scared to quit cold Turkey but also nervous to continue taking it, and my cardiologist is off for the Thanksgiving holiday.
Sorry to hear you didn’t have a great experience with it, either. I was taking 2.5mg twice per day, then went down to once a day, then just switched to a beta blocker.
If you haven’t found the post yet, I also tried ivabradine another time after this as part of a clinical trial and had a similar experience. That time, when weening off of it I cut pills in half for a couple days, then stopped. I didn’t have any issues with stopping it after weening for about 2 days, but you might want to ask your pharmacist, if your cardiologist is out.
Hi Iām new here and so thankful to hear you guys talking about what sounds like Iām experiencing in very early days. Iām UK btw
I developed SVTs during my last pregnancy felt awful last Christmas and was given a dose of bisoprolol which sorted me out perfectly. Had my little boy and stopped meds immediately after. All seemed fine.
Had a few races with my covid vaccines then things have gone worse.
My Dr thinks sounds like POTs as I suddenly go light headed and feel the need to move (Iām presuming this is the adrenaline rush you guys mention)
Went to see cardiologist on Monday after being on bisoprolol again for the past couple of months with no real benefit and he has prescribed Ivabradine 2.5mg twice daily. Again I stopped the beta blocker and started this tues. I though I felt euphoria on tues and thought again yea this wonder drug Iām back to normal however yesterday morning I felt dizzy palpitations generally rough as I felt in the first place when I had attended the ER multiple times(petrified something with happen when I have my baby alone) day 3 so I know early days but yet again I feel terrible. I was up in the night to attend to the little one and it felt like my heart was beating so hard it was about to leave my body.
Iām not sure if I can continue feeling like this for the next 2 weeks which is the length of the trial heās given me. I just donāt know what to do.
Ps I was only on a low dose or beta blocker too x
Iām on that same dosage and having all kinds of crappy side effects. The adrenalineās crazy. Also having crushing fatigue and chest pain. Canāt wait to get off this medication!
I’m getting adrenaline rushes after 2 weeks on Ivabradine 2.5mg. Nothing to do with weaning off anything as this is the first thing I’ve tried for pots. Going to give it another week then speak to the GP. Incidentally, I haven’t had adrenaline surges prior to starting the Ivabradine š
One of my docs told me that increased adrenaline is a side effect of ivabradine, although an uncommon one. I’m not sure if that’s true or not, but for me it never went away. Ivabradine is just not for me. I hope the adrenaline rushes improve for you!!
Iām so glad to read this post. I have post Covid potsā¦ I went about 4months on Ivbradine after many beta blocker attempts. I have low Bp so like you I thought, āyay my saving graceāā¦ Then boom, out of nowhere in a restaurant with my daughter one day I had adrenaline rush, PVCs, that triggered bad SVT. She called 911ā¦ Iāve been torn about requesting to get off it, but Iāve had more SVT in the past 2mo than in a yearā¦ I think I need to go back to beta blockers and florinefā¦ My heart feels far worse now than priorā¦ I think you are right, itās the adrenalineā¦