Hi, I finally managed to get a phone call with my Cardiologist who performed a successful CV back in October but I soon went back into Persistent Afib.
Since then I have come off Bisoprolol ( breathlessness) and Verapamil ( possible adverse reaction), all in a previous post.
The outcome from my call was to come off Amlodipine and go onto Diltiazem and if that does not work maybe have another CV.
Today the letter to my Doctor arrived from the Cardio saying to put me on a dose of 200 or 240mg a day to control my ventricular rate, and once it is controlled I should feel better breathing wise.
I`m just unsure as to what this medication is trying to achieve?.
My resting rate is between 70-80 and around 130 out walking ( breathless usually) but I thought that 60-100 resting was normal. Should the walking rate be less?
Apart from the breathlessness I`m lucky to be asymptomatic.
Thanks for any thoughts.
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If you are just strolling on the flat then yes the 130 could be considered high If you are striding out and walking up hill and downdale then possibly not. I exercise pretty much every day at the gym and keep my heart rate down to 120 - I use a wrist monitor connected to a chest strap to view my heart rate as fitbit and any of the machines in the gym which claim to show your heart rate are not quite right. I too have permanent AF. I had 3 successful cardioversions - the longest one lasting 15 months. I was due to have an ablation but unfortunately Covid stopped that and now heart too enlarged to have ablation. My resting rate on just apixaban as no beta blockers or rate medication suited me - tried about half a dozen different ones in different doses and combinations but all made me feel worse than the AFib, is 54 - 60 at rest and as I said when exercising I try to make sure it does not go over 120 but still get good aerobic and cardio exercise, swimming, jogging and bicycling
Thanks for that, no one had actually mentioned heart rate exercise wise to me just resting rate.I just happened to measure it once I had come back home and it settled down to about 80 after 15 minutes.
I’ll look into getting something to monitor it whilst outdoors.
Cardio didn’t comment on the phone call when I mentioned it or seemed that bothered, so I thought it might be a chemical Cardioversion medication when he mentioned Diltiazem.
That's a good recovery time. Maybe you should slow down your walk slightly - especially when you feel breathless - your body is telling you something when you are breathless slow down and recover. I keep thinking I can do all the things I could when I was 40 and had no heart problems etc - that is a long time ago and I have found out that I can't do what i used to do 20 odd years ago. My wife once saw one of those witty jokes on face ache It went along the lines of: A&E is full of older men who thought they could do all the things they used to be able to do when they were younger This comes from some one who has fallen off the roof twice whilst trying to replace fascia board or aerials after a storm only about 6 months after a hip replacement. I can tell you the new hip is pretty much indestructible even though I have tried my best to destroy it!
The only advice I'm going to give you this. A walk is not a race - slow it down and have breaks if you feel breathless. A HR of 130 is maybe a little high on a gentle walk. When I was in sinus I had that jogging.
There is one more thing to note. The quicker it drops the better. For example a rate of 130 should (in an ideal world) go to normal HR after about 15 minutes resting.
Did a two mile walk today (much up hill) and feel great for it. However I've given up checking my rate now. I'll know if it goes to high.
I once asked one the of the GP's at my surgery, if I was out on a hilly coastal walk and my AF kicked off, at what rate should I call for help. His reply was if it went over 130. So I too think that rate is a little high for you. As Desanthony has said he now has an enlarged heart through heart beating too high. I'm in constant AF and after a scan I was told that my heart is slightly enlarged.
I agree with Paulbounce, walk at a slower pace if you feel the need and don't be afraid to stop and admire nature.
Try interval walking- 2 mins slow, 2mins a little faster, 2 mins at route march pace. Then stop of 2 mins. (This causes my neighbours much mirth btw. ). Then repeat. Then just enjoy your walk.
Get into photography via a camera or a phone! Its worked wonders for me. I notice the small things in nature more and it makes me have short photo breaks frequently that helps keep my heart rate down. Also it disguises my frequent stops so plays to my vanity! You dont have to do anything with the photos.
Regarding the Cardiologist, I`m afraid I have given up in a lot of ways.
I had the successful CV in Oct last year with a follow up phone call booked for Jan this year.
Soon after though I went back into AF and was put on Bisoprolol by my Doctor which affected my Asthma.
I was then switched to Verapamil in early January to which I had an allergic reaction, my Jan appt was then moved to May, so my Doctor emailed the Cardio 3 times asking for his opinion on which medication to try as he didn`t want to make the decision and also have to wait till May.
I rang the Cardios secretary and then a succession of cancelled appointments finally got me one.
His first question to me was am I still in sinus rhythm!, I paused for a while and asked do you know what has happened since my CV?, he had no knowledge of going back into AF or the emails sent re medication.
I did enquire is there anyway I can contact his staff or anyone for queries I may have to which I was told they are very busy ( I gave up at that point I`m afraid), and yes we know they are busy.
So I have a follow up call in 6 months to see how the diltiazem has worked.
Thanks for the reply mav7 and yes the monitor sounds a great idea.
Yes, we all can have issues with our cardiologists, myself included. I hope you are able to resolve the communication issue and receive excellent care.
Hopefully. I’m on 180 and my resting heart rate averages low 60s but I don’t have persistent AF. I guess breathlessness is your heart just saying ‘I don’t feel like it today’. My husband had found that on some days he could keep up with me while on others he lagged way behind, no obvious reason. I was having episodes of breathlessness but when my GP decided I needed Ramipril for my blood pressure as well it improved. Best wishes, be good to hear if it helps.
Just surprises me that the thinking wasn't discussed with you at the time. That's the point the phone call surely? It's a joint decision not a fait accompli. Could you seek a 2nd opinion?
With the Cardio not being aware of anything since my CV, emails from my Dr and calls to his Secretary about going back into AF and tablets not right, it felt like I was having to fill in everything that had gone on over the last 4 months.
This really threw me and when he said try the new medication I went along with it with my head not knowing what to ask to be honest.
If it's any help here's my strategy- make a bullet list of points you want to make to him. Send it in by email and include a summary of events e.g 6 episodes between X and X. Average HR X HR when exercising X plus breathlessness. I always call the cardiology department ahead of time to check the email address, then the day before to check it's arrived. You can also send by post. Include info like your hospital number, date of meeting etc. Sorry that this is horse bolted for you but I've found the best way is to be firmly proactive. BTW of you are I'm England your GP might be able to get a referral to another hospital. We can't do that on Wales easily. Don't give up - you're entitled to this.
What I have learnt with never seeing the Cardio (2 phone calls only, 1 when he said I was suitable for a CV and the other week which in his eyes was a follow up call about the CV).
Is that when I’ve spoken to his secretary, and that’s as far as it seems you can go, he bases himself at a Private Hospital and any emails or letters go via the Hospital secretary to other secretaries at the private one.
So when he says he was unaware of any change of circumstances for me something is going amiss in the system.
That’s a very good idea if I can find the email address, at least I then know he is aware of any changes and could maybe suggest changes rather than doing this again in 6 months.
I tended to go along with the “experts” rather than question anything which is beginning to change now.
I think a private appointment with an EP is a very good idea. It’s the way I went as I couldn’t even get to see a cardiologist for months as there wasn’t one at our local hospital - they have difficulty recruiting and keeping staff and there hadn’t been a cardiologist at the hospital for over 14 months so when a new one was appointed there was a lot of patients waiting to see him. This was before Covid so matters must be even worse now.
HiBreathless I had with Metoprolol which is a beta blroker.
No breathless with Bisoprolol as it lowered day AF from 186 to 156bpm.
But priv specialist put me on Diltiazem CCB and it controls me down to 93. Still take 2.5 Bisoprolol.
It seems something is making you breathless. Are you asthmatic. Energy loss if it is that instead of breathless is becuse your rate is not controlled.
There was a 50hpm drop with the new CCB.
At night heart beats are 48.
Last year I had 3 x 24-heart monitors soon after new med established.
Diltiazem needs to be carefully monitored and 180mg too high. Balanced I'm on 120mg.
The Bisoprolol which does not cause breathlessness but it is the uncontrolled rapid bpm that makes you stop and at a guess it is your heart under stress.
At rest your hbpm are nornal but if your rapid hr takes a long time to settle it will be that.
You should have a 24hr monitor which will show what's happening. Do you get sweaty when exerting yourself?
If you're only breathless with the higher heart rate, than the higher heart rate is conceivably the cause of being out of breath, not the diltiazem. Or at least it's contributory.
When I'm in afib, I reacted in a similar fashion, with a resting heart rate under 100, and my walking around (ambulatory) heart rate similar or greater than yours. And the higher heart rate did make me breathless at times.
I found that taking a very small dose of a beta blocker, fast acting metoprolol tartrate, brought down my ambulatory heart rate to around 100. I cut the 25mg tabs in quarters and took 6.25mg every 4-6 hours.
Like yourself, I don't react well to beta blockers, but at this very low dose, not a problem.
So, you might ask your doctor to start you at a very low dose and see if that does the trick. Then titrate up a little until your ambulatory heart rate is under control without undesirable side effects.
I find the titration easier to do with a fast acting beta blocker like metoprolol tartrate. Then once you find the sweet spot, you can switch over to an equivalent dose of a slow release, or just keep up with the fast release.
Alternatively, you could just increase your dose of diltiazem, assuming you tolerate the dose increase. I was told I could go up to 480mg a day, although never went up that high. Again, I found the easiest way to titrate up the diltiazem was using the 60mg fast acting tabs which can be cut in half or even quarters. Again, once you find the sweet spot of efficacy and tolerability then you can optionally switch to a slow release formulation.
Not all doctors are open and trust their patients to self experiment/self titrate with dosing, nor do many even take the time to titrate the drugs themselves, but fortunately mine is ok with self titration, as long as I follow a few guidelines, such as not to exceed 480mg of diltiazem in 24 hours. Hopefully, you will find the right dose of diltiazem, or the right combination of diltiazem and a beta blocker that will lower both your resting and ambulatory heart rate in such a manner that you can go about your life without being out of breath when walking.
A lot of doctors, whether they are in a hurry, or just don't care, often prescribe cookie cutter doses of medications, but we are not all identical cookies. We are individual people who often react very differently to the same drugs.
I'm glad they are dealing with your high ambulatory heart rate by upping your dose. Hopefully it will help. However, if it doesn't, or you do not tolerate the higher dose of diltiazem, ask them to keep working on it. Like I mentioned, adding a small dose of beta blocker can potentially keep your diltiazem dose down and accomplish the same thing.
We all react to these drugs differently. The trick is what works for you both in terms of efficacy and side effects. Unfortunately, the doctors sometimes just tell you the side effects come with the program. Sometimes they do, but sometimes they don't have to, with a bit of experimentation. Best of luck and please keep us updated on how things work out for you.
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This comes from some one who has fallen off the roof twice whilst trying to replace fascia board or aerials after a storm only about 6 months after a hip replacement. I can tell you the new hip is pretty much indestructible even though I have tried my best to destroy it!
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