can anyone advise me
If you are in AF with a high pulse regular what damage does this do
I have two pieces of advice one that it’s giving your heart a constant work out and the heart will expand like a muscle leading to danger
The other that high heart rate with AF isn’t dangerous on its own
I am on Bisoprolol but still have periods of 90 to 110 beats per min
I have not yet been given other medications other than Amiodarine that didn’t work and was stopped at Christmas
Would not be concerned. You're well controlled. 90-110 is not very high. How's your quality of life? If not great, have you considered an ablation?
Jim
hi Jim
I was 178 and 145 during my two occasions last summer in hospital
To be honest I get breathing issues yesterday at hospital I was 112 but to honest thought I was just a bit asthmatic. Although the stairs were a bit of a strain ( lifts were out)
I saw a cardio doctor in February he is going to try me in Flecainide ( I am not sure if the spelling )
Then if no luck ablation he believes my breathing issue is AF related
Normal heart rate is considered to be between 60 and 100 so your rates are fine. Most people with uncontrolled AF have rates of 200+ which can create cardiomyopathy which could lead to hear failure. AF where rate is well controlled is not considered dangerous..
so Bob just to check if your resting heart rate is say 100 near constantly this wouldn’t be a issue ?
Only if you are symptomatic. Most treatment for AF is to relieve symptoms. Whenever I have asked medics are not concerned as long as HR is below 120. I can cope for day to day stuff up to 130 but over that I need to rest with feet up. My normal resting HR is around 65-70 but episodes of Tachycardia or AF take it up to 130.
You have to bear in mind that AF is very individual and normal resting ranges for HR vary from 50 ish - 120
I have been told countles times by cardiologists that they do not treat rates of 100 or below.
even if it’s medication keeping it low Bob?
Hi
You are giving folks the wrong indication!
Any anaesthetist would say WE WILL NOT OPERATE if your resting H/R is over 100! This a minute. My DHB equated any over 100 H/R when you multiply x 60 = 1 hr and 24 for hrs in one day.
In other words you are wearing out your heart. I agree.
AF is NOT controlled unless your H/R is under 100.
My operation in March was done after my resting heart on Bisoprolol of 120 was
brought down under 100..
It sounds like the fact that you cannot take medications to reduce your heart rate is
jollying you on. But an operate pass you would not get one.
In 2020 during thyroidectomy with uncontrolled AF persistent and rapid then on Metroprolol I had 2 anaesthetists in the operating room and 4 months after my Af induced stroke due to thyroid papilliary cancer undiagnosed until I had a carotis neck scan. A shadow on my thyrid changed everything 4 days into my hospital stay.
I agree with you Joy. We know firsthand the damage that can be done. I have been unable to have any other medical treatment because of a high heart rate. Doctors will not touch you that includes dental. I hope that you are doing better now. 🙏🏻
Hey Dawn in Mississipi
Are you OK with the tornado going through near your area.
I saw recently that you had surgery. And improved your lot.
Yes on Calcium Channel Blocker Diltiazem 120mg AN and BB Bisoprolol PM 2.5.
H/R is 47 average night and stays down at 60s till afternoon.
Thanx for asking.
cheri JOY
hi Joy. I am not in Mississippi. I am in Texas. I am about three hours outside of Houston and four hours from Dallas in a very rural area. They do get tornadoes however, thankfully we have not had any. No doubt I would have a heart attack before the tornado would ever get me. Actually an E3 tornado hit where I used to live in Florida during the hurricane. It did a lot of damage but thankfully no one died.
I had a pace and ablate and a new type of pacemaker. It is a month now and this past week was very good until Saturday which was not a great day. I guess my body is still adjusting I will see my EP again next week and will learn more than as to what happened to me Saturday. My heart rate now is 80. Next week they are going to try to lower it to 70 with a goal of 60 in the next few months. Previously it was in the 150s and I am in heart failure, but there is a possibility of the changing because of the pacemaker.
Nice to hear from you again
Hi
What's wrong with anything H/R under say 90.
But a Pace Maker should be set to change for night or an
average. I go down to avge 47 at night. I can go down to 62 day
avge on Diltiazem.
It could be as I have lost 6kg.
My OLDIE boyfriend rings his St Johns button (invercargill) whilst there when his diastollic descended to 35! He wears a Pace Maker. But I asked does his Pace Maker alarm go off but he said he feels something wrong and he gets out his equipment to measure BP. He was given a spray there and now has one.
In 2017 he had a heart emergency. I'm yet to find out. Trouble is now back from
S.Island his BILaw had a heart emergency so no camping for us.
And theres nippiness in the air. We are heading for winter.
I am set at 80 there is no need to set day and night it anticipates where it should be whether I am active or not etc. If I become active it will go up just like a real person lol. My pacemaker is not. The average type is allegedly new, as it is the way that they wire it. HIS pace bundling. Some thing I was never told before was that it was my two ventricles not beating together besides atypical, flutter, and a fib. Prior to the pacemaker, my heart rate has been in the one twenties since my cardio version in October. It only lasted 3 1/2 weeks but it was a great 3 1/2 weeks. It reminded me what normal felt like. Prior to that it was steadily in the 150s with permanent 8 fib. The cardioversion brought it to 82 but when it stopped working, it shot back up in the 120s as I said. On 5 April, they will set it down to 70. If everything else makes that agreeable with the final goal of 60 not sure when as it is one day at a time. They want to get it there because they can and it is healthy for me if we get there. They believe that my pacemaker will be able to get rid of my heart failure because it is the beginning stage. They are taking their time because down to 80 I was lightheaded For about a week, so I am probably going to have that again with the next step down. Only doctor is cautious and passionate about giving the best quality of life that we can get with all of this and to get it sooner than later. To repeat other procedures makes no sense because they do not last usually where this should. In a perfect world I think the majority of people having a very bad time with a fib should be able to skip all the other stuff and go right to pacemaker. I have no regrets, even though I was dead set against one in January. I had it done February 13/27th AV node, I am happier than I have been for quite some time. I have so much happiness I could giggle I guess that’s what you get when you have good circulation and you are normally a happy person. I thought that person was gone forever. I don’t remember do you have a pacemaker
No, Dawn.
I thought a Pace Maker was for slow H/R. Or BP like Malcolm has.
I jokingly say "you can have some of mine!". We laugh and it is good banter.
Who would think that I would find my 3rd and final soul mate!
Hw warns that my H/R will soar. But I say I'm on Diltiazem!
Diltiazem has made my quality of life improving.
I have never had chest pain but the Specialist did ask me last August.
I have never rung my St Johns alarm. Once as I banged my head. St John guy was not concerned where as he should have been. On PRADAXA.
I manipulated arm/shoulder back! and hurt my coccyx ouch.
Experience is our outmost best story and Drs, Spec should listen, JOY
I have had Amiodarine tjst didn’t work I’m not sure why you think I can’t take medication? I haven’t really been offered any other than the former and Bisoprolol
Hi,
At the time AF mugged me in January 2010 my resting HR was in the high 90's - constantly with BP around 136/80 ( I was 65 back in the day). When admitted to A & E it was clocked at 156. I think it had been in high 90's for some years prior.
At the time I was put on Bisoprolol (5mg) daily and it brought it down to 64 - 67 bpm, a rate that it still holds today. With some fine tuning of lifestyle choices, mainly diet, over the years thus far this year no AF, last year 2 short bouts. I rejected any notion of ablation in the beginning.
TBH, in terms of what its doing to your heart or what state your heart is in is guess work from anyone putting a post on here. Only one way to answer that is to have a regular ( say every two years) Echocardiogram.
yes my resting is about 90/110my peak when I went to A and E it was 178
I would say it is more than guesswork that a few of us are giving hair as far as damage. While we cannot say the specific damage for the patient here, we can state without question that when your heart is beating like that, it is causing damage. You are not getting the circulation you need, so not only is your heart being damaged but other organs will eventually as well. I was just told this when diagnosed with heart failure, the end of December. When your heart is being exhausted, there is nowhere to go but down.
I think you would do well to ask your doctor as sometimes individual cases differ, but if your heart is otherwise sound, then the study linked below is reassuring and would likely apply to you. My elderly friend, now nearly 90, and my son's colleague, who is 76, both have long-standing persistent AF and their hearts are otherwise healthy.
openheart.bmj.com/content/8...
Steve
I will have a read of that thanks
I had a echo back in august that seemed ok just mild MR low normal EF , plus a x Ray and that seemed fine
Just the aniography was a issue due to my heart rate it not being possible to do
My elderly friend has mild MR, too, and I had it when I had persistent fast atrial flutter before my ablation. I think it's of no consequence. My EF is similar to yours.
Steve
This is what is important NLGA
Insure you receive periodic Echos to check your heart condition.
Also, you state periods of 90-100 hr. Everyone’s heart rate can exceed at times.
What is your average heart rate. May want to wear a holter monitor if you have not.
hi mav7
I had 2 24 hours monitors in October average 70 in January it average was 132 peak 182
I didn’t even feel palpitations in January
Average 132 in Jan ?
Much too high Check with doctor
Best to you !
yes it’s a cardio doctor that I am seeing . Same one who sent me for the aniography this week which I couldn’t have on the day due to the heart rate
The fact that they could not do it because of your heart rate should tell you some thing right there.
obviously but what happens now ? Echo was fine x Ray was fine so what happens next no one at the hospital could tell me
i’m afraid only your doctor can tell you. Getting your heart rate under control is very important. If you have that and permanent a fib, something needs to be done. Just because you don’t have damage yet doesn’t mean just ignore it, and it almost sounds like that is the attitude. you will get the damage just like if I didn’t get the pacemaker, I would’ve continued getting damage further into heart failure. That is not even a question. Your heart can only take so much. Are you NSR? I have a fib, atypical, flutter and heart failure now. My first two ablations worked so that I got peace from everything for a year and a half. For the last year and a half I had been unable to walk and could only shuffle across the floor in my home. I was breathless, nauseous and had crushing chest pain from the time I would stand from sitting. I cannot believe after a month how normal I feel for the most part. My body is still adjusting and a pacemaker just not help flutter. FYI, but for me, flutter was never a real issue anyway. I wish you luck getting answers. Others probably do not agree with what I stated, but I am just in the process of all of this firsthand. I have an incredible EP who thankfully knew of a pacemaker that is fairly new as far as availability. Other pacemakers would not have been able to help me with the issues I have. Without this particular time again, I would’ve continued on in heart failure, and needed a transplant, which at my age I probably would die get. All I can tell you is my story of a high heart rate, and the damage done in eight months
Interesting question as I regularly had episodes of high HR over 150 for days and my consultant was not concerned - however - there is absolutely no way I could have walked down the street as I was so symptomatic. Your HR is controlled and not high so the risks are reduced of lasting permanent damage.
To answer your question I think both answers are true - depends upon the individual.
My understanding is that it is a good idea to control HR longer term but whether or not it will damage the heart structure is somewhat individual which is why echocardiograms and other monitoring tests are important. I have no underlying structural problems with the heart and couldn’t take heart rate control drugs and my consultant was not bothered about that but advised no exercise with high heart rate. I now monitor to keep my HR when exercising - not that you could call it exercise these days!
The only person I knew who ever died purely from AF was someone with AF who would not take advice or treatment and stop pushing themselves through exercise having been taught to ‘push through the pain’ resulting in death whilst exercising.
very interesting read
I worry about the work load enlarging the heart like a muscle on a body builder
I worry about pushing through the heart. If you are out for a walk and feeling breathless and tight chested and if you push through it a little then stop for a rest is this okay. How much, when we are out and about can we push through to get back to base. If short-lived is this okay. This is one of the things I worry about.
The advice given at a AF Patient rule of thumb for exercise was if you can walk and talk at the same time continue, if not slow down or pause until you can speak in sentences without feeling breathless. ‘Pushing through’ is not a good idea. It is the symptom of breathlessness rather than HR per se which is important although good idea to have an idea of HR and your top limit and to keep to that.
that makes sense
In my peak I couldn’t even hold a long phone call without breathing issues just standing
Thanks for that
An EP I consulted privately specifically told me that AF on its own does not damage the heart muscle by causing it to stretch - unless very high rates for long periods of time or in conjuction with other arrhythmias. He's a well respected EP. So I assume he knows what he's talking about. Those rates you're quoting are not especially high.
thank you that’s reassuring
I thought 110 was high not y th I the level I had in hospital but over time to much
Singwell, my EP (highly well respected) told me the same thing only last Monday. He said it would have to be very high heart rate for a very long time to cause heart failure. Incidentally, he added on the end 'I would be first to know about it as I would be breathless and my feet and ankles would swell considerably
I am not sure what they consider a very long time. Mine was in the 150s constant for about eight months and it was enough to cause heart failure. FYI at no time did I have swelling. I did have many other symptoms. The high heart rate without a doubt caused heart failure. If your heart is straining like that on a constant basis, it gets exhausted. Remember, it is not pumping correctly, so not only is your heart having damage done but other organs as well because they are not getting circulation and blood. I honestly do not understand the thinking that it is not causing damage. It was the reason my doctor stated you and your heart have had enough and why I ended up with a pacemaker one month ago today. If you don’t have symptoms and/or a high heart rate that would be one thing. If normal is really around 60 or 70 then how can 100 be considered normal? Tachycardia begins at 100 and we know that is not normal. In my opinion, they seem to play loose and fast with the numbers. my pacemaker is set at 80 and next week they will be lowering it to 70 with a goal of 60 eventually. Those are considered normal, and I felt the difference upon waking from my procedure. Even my mood is happier.
I do hope anyone with high heart rates on a regular basis will speak with their doctor ASAP no it won’t kill you like a heart attack but eventually in heart failure you reach a point where your next option is transplant, so I think that’s pretty serious. For those who have a fib that is controllable I am very happy for you, but there are also many of us who cannot control it. We are the ones that end up having issues such as heart failure and it’s better to know where it comes from and try to stop it before it gets to that point.
Hi DawnTX I am so sorry this has happened to you. I agree, he didn't say how long but he may have been referring to me as an example Yes, my heart rate goes over a 100bpm but does drop considerably after the first 12 hours and normally reverts to sinus rhythm in about 30 hours. My episodes have been once every 4 months atm although I am thinking it won't stay that way. How on earth did you cope with a heart rate like that for 8 months, surely something should have been done earlier for you x
I never got sinus rhythm back after the procedure/surgery last April. I had been having problems walking anyway but after that it just continued worsening.
I did not cope I existed just barely. If I could’ve fallen asleep and not wake That would’ve been fine with me if anyone were to ask. Many of us have become sick with some thing in our lifetimes and we think oh my goodness I feel like I’m going to die but really it’s more drama than actuality. This time I was terrified to die but then I convinced myself that wasn’t really bad as long as I didn’t linger in pain. Everything that had scared me about death was gone. It wasn’t the feeling of the higher rate it was the way it affected my entire body for my brain, and every other part of me because of lack of circulation of oxygen blood. I felt that my body was really dying. Three years ago I had no clue about this illness, and was active and happy. Even after being diagnosed, to ablations kept me going. I was never that miserable with a fib, except when I was on amiodarone. At that time I imagined it was similar to people on chemo. God bless them all. Once my doctor realized how it was affecting me he took the right off of it. I don’t know why it is the way I am, but I under play my medical usually, so my Cardiologist did not realize how bad I was feeling. Even the night of my major, a fib event that knocked my front teeth out and into places they did not belong and more, I waited two days for an appointment with my doctor, because I did not tell them what had happened other than I fell. We have to realize the majority of medical staff we talk to Are very busy and take you at your word, then hang up. I had lectures from several different doctors telling me the fact that I lived was amazing. As a former medic, I knew better but once I woke up, I didn’t think I was the bad, of course, the knock on the front and back of my head with two falls that night may have had something to do with that.
For now unfortunately, for many of us, a fib will only spiral down unless they come up with a miracle cure. They are working on things, but I don’t think they will be able to cure it because we are all so different and as small as it seems the heart is it’s a big world in there. My GP did not want to do another ablation because I am already very scarred from three and the odds of actually getting the right spot are not very good. He did not feel it was worth the risk of another ablation. He does not believe in repeating cardioversions, ablations, and meds that have not worked. I had been through enough of all of those. My second cardioversion was unable to do anything with three shocks. Why would he want to try it again and stress my heart even more? Following that I was diagnosed with early heart failure, not congestive. That is when we spoke of and decided on pace and ablate. The cardioversion was going to work hand-in-hand with another medication, but because it failed it made no sense to give me the meds because I never got to NSR he put me on digoxin for a month while making the plans and arrangements for me for the pacemaker. The one I have is relatively new and made for problems such as mine. It is a step up from biventricular. The others will not help me. This is why I like to tell people about it. It shows they keep working on making our life better.
Unless they someday find a cure the best any doctor can do for us right now is give us quality of life. The quicker we can get to that the better for us. Unfortunately, I believe ablation, medication and cardioversion are just moneymakers because they are like a Band-Aid just temporary. We might need one to hold us until they can get to the next step. Yes, I know there are people that do very well with some of these sometimes for the rest of their life. That being said, though how many of us continue to suffer with a fib. I was very against a pacemaker. I made a list to ask my doctor questions. He gave me answers before I could ask him anything. It all made sense from that day forward. I could not wait to get it done. If you knew me, you would know I question everything. I worked law enforcement so that was a bit of my job. He got me through that. The procedure was not what I would consider painful may be more uncomfortable and because it’s weird having something in you, you need to get used to it. There are things you cannot do, including using your left arm, raising, etc. if those are the trade-off to feel normal, I would do it again and again. They even have some now without wires, they are leadless. I have two leads, I don’t really care how many if it works. I have a Bluetooth app the hospital monitors me 24 seven and can call and ask me to transmit to them if needed. I have a 24 hour hotline. I actually used it the other day and had a doctor on the line within minutes. Nothing is perfect and my body is still adjusting. It could take up to six months total. That being said I am told by then I should be able to do anything anyone else with a heart can do within a few limits we no longer have to be afraid of our heart.
In reference to your last line. My doctor is at fault for ignoring me, and I am at fault, and my only excuse was I had no stamina. I was so beaten up at the point to be able to fight for myself. I believe there are few doctors that would’ve treated me the way I was treated. As I get stronger, a lawyer may come into the future for me. It was made clear to me that the excessive heart rate is what put me into heart failure. So anyone that thinks otherwise can argue with my new cardiologist and EP.
I agree with your doctor there. A fib may consist of crazy rhythm, but you may still be NSR just like many things, a fib is complicated, and several factors need to come together. In my opinion, though, and my doctor, high heart rate is overworking your heart. You are not getting the pumping of oxygen blood is needed. The heart decides what the most important part so that need it that being said, you could end up with kidney failure and other things as well. Just realize damage is being done.
If your heart is operating properly at a 90 to 110 rate then no significant damage is done and potentially do your heart good if your unfit. If your heart is not working properly (say Afl or types of AF) at any rate your potentially going harm in the long run, factors such as rate, out of sync muscle contractions and muscle distortion (particularly with Afl) come into play. There will be a proportionality effect that will determine the time for damage go appear. As far as I have read this is normally many months or years (or not at all). Too high a dose of some heart medication can also damage your heart in the long run, thankfully Docs are aware and control medication accordingly (or should at least).
it only took me eight months to go into heart failure FYI
My normal heart rate varies between 80 and 98. That's upper end but in normal range. GP isn't at all concerned.
Hi
After Metroprolol and then Bisoprolol did not bring down H/R Day sufficiently I was recommended to a Private Heart Cardologist.
I was put on a CCbBDiltiazem. Within 2 hours H/R at rest went down 105 a minute!
We twinked the 1/2 dose from 180 to 120mg. It worked separating Bisoprolol to PM 2.5mg.
It is a concern over 100 at rest. No operations allowed. Also over time the heart can enlarge like mine has.
With me Bisoprolol BB controls BP mainly Take PM
and
Diltiazem CCB controls mainly Heart Rate. Take AM
Both control Rhythmn.
Both leave Night H/R at 47 avge throughout.
Now 102-130/69-77. with H/R DAY69-88
Voila.
Able to have operation March last year. Johnson & Johnson ugly mesh out.
cheers JOY
Hi Joy this is why you and I hit it off because we both get it because it has happened to us already. We know the longer the heart is not beating the way it should. The more damage is being done. It is quiet some people may feel nothing. I knew I was in trouble. It was finding the right doctor and the fact that I was so unwell, I did not have the stamina to fight for myself at the time that brought me to heart failure. Without a doubt if I had not found Dr. Saini when I did I would be going further into heart failure, and after that the only option is a heart transplant. I don’t know the age cut off’s, but I have a feeling at that point they will give it to someone that can use it better than I would. So another words, I would be facing a death sentence for sure. At least now it is just like everyone else who is alive, we get no guarantee it one day at a time.
A good friend of mine lost his son two days ago. He was a police officer, and the helicopter went down. Half my age but he did not have a guarantee either and I’m sure the last thing he thought of that day was dying. We have no expiration date stamped on us. Depending on how horrible you feel, if your doctor, talks pacemaker, keep your mind open. I have had a few nights of great days, but no worse in fact, better than I had been living for the past year and a half. Mentally besides physically, I feel so much better and happy. I had a little bit of a scare on Saturday but what I am finding out is that it is because of things I did not know yet. We need to know what is normal to feel in the early stages of healing. Although it feels like magic to feel normal again, there is no magic so we need to be patient. Patience is not a virtual of mine. 😵💫
Hi
Experience is the main tick.
Although I don't feel my rapid persistent H/R because of my 'bad' rib cage when I was not controlled I would sweat uncontrollably and stop yes stop any exertion. Lie down sleep right then. Or sit down as legs like jelly.
I have come a long way to better my quality of life.
On 23 December my H/R Day kept low 67 Dr was away so I experimented.
Ditch Diltiazem and return to Bisoprolol AM and PM.
Dr back 3 in all ECGs 2 outside Dr. I was shown that Bisoprolol only was not controlling my rapid H/R again.
So even when H/R stays down I need Diltiazem as usual in AM.
So I am understanding my meds. I need Diltiazem 120mg AM. and Bisoprolol 2.5mg PM. CCB and BB need to be separated. Otherwise they 'fight' and cant do their job.
I'm interested in your new Pace Maker. Does it have an alarm. Also all the things that set things off.
My Malcolm has one on left. He has showed me.
Yes H/R below 100 is what we all need when we are at rest. 20mins quiet, no talking or moving is at rest. Dr physically takng it best.
Take care and Iwill put in a prayer for you.
cheri. JOY
it does not have an alarm as such not on my end because I have a Bluetooth app and I will get a notice from the hospital. They monitor me 24 seven and if something does not feel right, I can call a hotline 24 seven. Because of a problem I had Friday night and Saturday I used that number for the first time. Within 10 minutes I had a doctor call me back. He believed it was my blood pressure. Also, a pacemaker will not help flutter in case you did not know. I have said before that part doesn’t really bother me because it never did. Afib does not go away. It is still there, but because of the AV node ablation my heart ignores a fib. The pacemaker is now the boss. Learning what is normal and what to be concerned about is the key. I got nervous the first week because I kept checking my heart rate. FYI I was told to stop doing that, because it adds to anxiety and will raise your numbers higher. With my monitor, they will handle it and call my Doctor Who will call me if needed. It can become a bad habit. Checking your heart rate all the time. Even a sneeze, can raise it. I can also feel some thing. If I check my rate at that time yes it will be higher. It was up to 102 one day and scared the heck out of me. I spoke with my cardiac nurse, who explained to me that the pacemaker anticipates what I should be at when doing certain things. People without a fib or a pacemaker have the same thing happen. My cousin has an Apple Watch and she teaches yoga. She said she is always surprised at how high her rate gets up to there are runners that get up to 180 or better but it’s OK. Now if I wake up and take it and find it at 1:80 there is a problem. As they say, knowledge is power. The more I learn within reason, I am not looking to become an EP 😏 lol I’m more relaxed I am and the less I pay attention to little things that mean nothing I notice there are some people out here who dissect everything but unless you have the full spectrum of knowledge, you can easily misinterpret I know because I have done that in the past. My doctor is very good at teaching me what I need to know. I have no regrets about my pacemaker. It is relatively new on the market but they go through a lot before it can get to that point. I have chatted with two people who have the same one. One has had it for three years and is doing incredible. The other got it just before me and also doing great. My app is quite interesting. You can check out my pacemaker made by Medtronic. It is called. Azure PS it is also stamped on it regarding MRI. Although anyone considering doing one to me must contact my EP first. Medtronic services all over the world. In fact, one of the two people I know now are both in the UK. They have this, and it is frightening to know that before this pacemaker, I would’ve just continued into heart failure even further, and then they only option from there is transplant.
Hi Dawn
Thanx for more knowledge.
I also want to learn from my Man.
I cannot understand why night avge is 47. Whereas I had 187 avge day on Metroprolol but 47 night with 2 pauses x 2 secs, Bisoprolol 156 still 47 night no pauses but now Diltiazem 62-88 avge Day 47 at night with no pauses.
But before stroke I always had cold shoulders during night waking up to put on a cardy.
All interesting history.
cheri JOY
Hi
Sounds like you are getting there.
I was light headed at 51 during day. on Diltizem 180mg. I fell 105 H/R day, and If I get up at night I am never lightheaded with the 47 average.
CCB for H/R fall for me mainly
BB for BP fall for me mainly
May be no pace Maker cause meds finally controlled me.
cheri JOY
It is wonderful that medication is helping because yes, getting a pacemaker is a big step. Having your AV node ablated it is forever. Last Saturday when I had my horrendous day, I’ll be honest with you. I became a big baby and jumped right into everything has failed again. Now prior to this I have really tried to stay positive with a little bending here and there. This time, knowing what I had done, and it was permanent, I told myself I had committed suicide, and I was done. Such a stupid thing to say to myself. I just didn’t know what was going on. I still don’t but I see my EP again on the fifth and he may be able to shed some light. The tech will also be there as well. Obviously, I did not mess up my leads of my pacemaker because I went back to normal the next day, although I felt exhausted. Repairing those from what I understand is more difficult than the initial fitting, and it scared the life out of me to think I would face that. I know just like everyone else here we have really had enough when it comes to afib. I have a feeling I am going to be told my body is still adjusting.
Hi
I was reading that if you get an infection through the Pace Maker you need it taken out!
Did they give you pre antibiotics?
Some drs and Specialists make the mistake of leaving the PM in.
I hope you have no infection but keep that in mind as it can happen any time.
So when the Mississippi river or its ....... do the crocodiles come up out of the river???? Ugh!
I will have a look at Malcolm's PM next time I see him and with a big bear hug I cannot press on it?? Otherwise it may hurt him.
All the best Dawn.. JOY
Joy I am not in Mississippi. I am in Texas near Houston Texas. In fact, some of the best and largest hospitals in the world are here. I don’t know anything about the Mississippi but you don’t need a river. I lived in Florida over 20 years alligators are everywhere, especially this time of year when they start to breed. The part of Florida, I was in had canals, and I was 5 miles from the ocean. They do not like salt water but they love the canals. We also have huge iguanas the size of medium dogs. They don’t bother people they run away and they are so ugly. They are cute but they carry disease and they are not from Florida originally. There are alligators in Texas. In fact, we have a huge lake down below us, as we are up high. I try to get clear of any place they might be running around. Pythons are another huge problem in Florida. It’s got the perfect weather and landscape for these things.
Regarding antibiotics. Yes, they ran two courses of antibiotics through me as soon as I was in recovery as a precaution. My cardiac nurse told me if my bandage came off before I healed and anything got around the incision they would have to take everything out and replace it. I could understand why because the infection would have a direct route to your heart.
I am having another attack or whatever you want to call it tonight. I’m not sure if it is my atypical, flutter or afib or not. It doesn’t hurt but I want to know why I am having this. It is upsetting me not hurting me. I had a relatively quiet day. I know exactly what I ate and nothing that should trigger anything. I was actually on the couch watching TV when it started again. I will know more when I see my doctor Wednesday of next week. they monitor me 24 seven so if there’s anything off I will probably get a call. So many questions but I don’t know what the questions are until it happens. I am not nervous about it this time and my heart rate is fine. I guess I should take my own advice and be patient about healing.
Thank you for thinking of me. PS I have a feeling you might have two messages confused together because I don’t know who Malcolm is either lol.
I now have heart failure after about eight months of a constant heart rate in the 150s. It damages your heart, so it is more than a work out. I also have a pacemaker now after to cardioversions, failed to put me in NSR. Medication’s would fail after just a couple of weeks. Although your heart rate is not as high as mine was just remember over 100 is tachycardia. I don’t know who you spoke with, but it sounds as though they don’t think it’s a problem and I disagree. If it was not your doctor, I would speak with my doctor ASAP.
yes it was my cardio doctor who said it’s only AF amd when we medicate that correctly your breathing will return but then sent me for the aniography scan when you need to be no more than 60 bpm to have it yet I haven’t been that low for months
Exactly. It’s really about your heart rate. I was supposed to have back surgery a year and a half ago. Now if everything continues as it is with the pacemaker, I should be able to have it done by fall. My IEP and Cardiologist both have said no doctor would even consider doing anything with the heart rate that I had because they insist on a cardiac clearance.
thank god you got done treatment I feel I had been dumped to one side
I don’t know what you have for a recourse as far as changing doctors, etc.. Please don’t let them ignore the high heart rate. I was dumped by my other Doctor Who did a very aggressive procedure last April. It was such a mess. I can’t even go into it here again. Physically and emotionally I could not fight for myself at the time. Finally in October, I called another doctor close to home. He saw me on a Monday and scheduled me for a TEE and cardioversion that Friday. I woke from that with a heart rate of 82 and a smile on my face before I even knew it was successful. That is what a difference having a normal heart rate makes. It was only 3 1/2 weeks but it was 3 1/2 weeks of heaven, after so long of nothing but pain. I hope you can get another opinion and get help. Maybe treatments are there different here in the states but Christmas week when my cardioversion failed after three shocks I honestly was about to give up on life and hoped I would just fade away. I said no reason to keep going on the way that I was just a lump on the couch Last week I was able to take my dog out and walk. We have an acre of land. I won’t say I ran a marathon and when I try to do a second walk around it it was too much but oh what a difference. Until the pacemaker, even trying to do laundry, or wash the dishes was impossible because I could not stand long enough to do things. Now I need to build my stamina back up. I am not trying to be a doctor here just telling you my personal story of the past year so it doesn’t happen to you.
You’ve been through such a lot Dawn. I found it quite a blow to be told last week that any further ablations are not possible, due to the amount of fibrosis. It had only been persistent since last October, so quite a shock. Cardioversion would be unlikely to hold either without Amiodarone before and for years after. My EP advised rate control.
They don’t consider pace/ablate if the rate can be controlled with medication. On the plus side my echocardiogram was fine. Bisoprolol increased, and I get a Holter monitor soon.
It’s all progressed so quickly, but in many ways I’m glad that the decision is out of my hands so that I don’t need to weigh options. Hopefully I can get on with life.
No doubt they still have medication they can try on me but so far everything has failed within a matter of weeks and when doubled it fails again. As far as ablations. I believe a good doctor will not continue to do them, because each one stars our heart. The only one my doctor was willing to do was the one for the AV node. Just three ablations had scarred me that badly. Knowing this, I am disgusted when I hear how many some people have had, and the same with cardioversions that either do not work, or do not work for very long. Our poor hearts should not be abused in those ways and that’s what I consider it being as does my EP and Cardiologist. I like the way they think. It will be three years for me with a fib come, October and I am already in heart failure. I think I said it to you before the pacemaker is the shortest way of getting you to quality of life, without damaging and failing even more. Because there is no cure, it makes sense that these things will need to be repeated if you go that route. I truly believe afib patients are used to make money and then they finally implant a device. Why make people suffer longer than they need to? It’s like watering a plant without a plate underneath it to catch the drainage. You can keep doing it and cleaning up or you could put the plate there to begin with and have a solution. I want everyone to get their life back as soon as possible. Yes, there are people that can take a pill and feel fine. That’s great. But if you are suffering and miserable like I was why drag it on? I honestly wonder what the suicide rate could be. I was not ready for that, but I did not care if I died because I would finally feel better. I was alone on the couch or the bed and could do nothing. I am living with my cousin, and he has been doing everything which makes me feel worthless even more. He never complains, but no one wants to be a burden.
I’m sorry they won’t look at other options for you. I was not impressed with the Holter monitor. It did not work for me when they were trying to diagnose. My EP in Florida fit at me with a loop Recorder. Two weeks later, a fib was diagnosed. Six months after my cryo-, my doctor called me. Unknown to me I was having problems. They were bad enough to put me right in to do another ablation. At one point there I hit 300 beats a minute. It was because of the loop recorder that this was caught.
Thank you for the prayers. I am sending many right back to you as well. We all need to support each other. I find an awful lot of inconsistency with a fib. It is not just the country. It is everywhere. The most serious procedure I had was done at a very famous hospital, and the doctor is very well known and written. It was after his procedure that I spiraled downward. On top of that, I found out that the medication he took me off of, and the one he kept me on should’ve been done the opposite way, which is why I had no relief, and was unable to walk and more and lived with crushing pain and nausea. We are supposed to be able to trust them to do no harm, sadly they are human and for whatever reason they fail us. If you ever questioned your doctor and feel unsettled, I know it is difficult there, but please do what you can to get another opinion.
You will be getting winter and summer has already been here for most of us in Texas. It has been gorgeous in the 80s just a month ago it was double digits. Weather is crazy everywhere. How hot does it get where you are? I have only been in Texas a little over a year. Last summer I discovered 106 can be normal. I love hot weather it’s a good thing lol.
I wish there was magic for afib, and we could just wave a wand, and everyone would no longer have it. Such a horrible thing and unless you have it or know someone with it we hear a little about it.
I would absolutely wilt in that heat! I live in Scotland, where it’s only too hot for me about 2 days each year 😂
I think they would consider a pacemaker but only if the rate isn’t controlled. Mine is generally, especially with the extra beta-blocker. So, although in many ways I would like a fix for this without meds (apart from anticoagulant), I do understand the thinking. With pacemakers progressing so much (yours sounds amazing, with the His bundle pacing), it might be an advantage if I ever need one, that these new techniques are more widely available.
Take care - hope you’re continuing to progress. I’m making myself walk a bit further - sore back permitting!
Well at least you know that there are new and better things available. They also have a wireless one and a couple of others. For the most part you can have MRIs etc. with all of them although the doctors need to clear it with your EP. I have two leads with mine. I will also tell you the tech assigned to me has incredible knowledge. When it comes to the pacemaker, I believe they know much more than even my EP. One worries about the device, the other about my body and heart. It seems like a great team. You can go on Medtronic’s website to see what their latest things are. They make devices for almost all of the body organs.
Hi Dawn again
I understand that inflammation can cause AF.
I'm improving since my gynaecological inflammation has left after TVT and Johnson & Johnson ugly mesh removed!
What do you think?
cheri JOY
been thinking the same
Thank you for your question NLGA. Trying to understand the workings of our individual AF and the best route forward is so difficult, as the range of answers here seem to indicate! Thanks everyone, these will certainly help shape a question or two when I see an EP for first time on Friday. And perhaps in your case NLGA it indicates the need for a second opinion.
It seems the experience of those with paroxysmal AF and persistent AF can be quite different too. So maybe uncontrolled HR means something different for each? I have gone into persistent quite rapidly since diagnosis last year, and if I was persistently much over 100 resting HR I'd be concerned for my heart longer term. As it is (80s to high 90s resting) the impact of AF on my stamina for walking and activities of daily living, the breathlessness on minimal exercise etc., is already enough to impact heart health I'm sure. (Unless it was too much exercise caused the darn thing in the first place!!😂)
What's true for all of us is that we need gallons of patience and that's not a bad life lesson. And as Bob always says we get on with our lives, whatever the limitations. As my daughter who is now severely disabled with MS always says - she is herself, not her MS. And finally, when a shot of adrenalin wakes me at night (blood sugar issue from eating that extra square of chocolate after supper) and heart rate starts to soar, I find box breathing or 4-7-8 breathing calms things down a bit.
Good luck.
You are right about part of it at least. We are all so different. I just don’t worry about what started it because it’s already started that chapter is closed. In my opinion. Nothing I can do unless I learn how to go back in time. It changes when it attacks, sometimes we trigger it with food sometimes who knows why. We can just lay there quietly and have it start. We need to find a way to alleviate what it does to us. It doesn’t hurt to know our triggers if we can figure them out but we cannot become obsessed because afib does what afib wants to do when it chooses to do it. What we need to know is how to ride it out I think. I admit, I have been focused on my afib because it has been so horrendous the past year. Up until then, because of my successful ablations I almost forgot I had it. My cardiac nurse told me to stop taking my heart rate because I am putting more stress on myself, which is only going to make things worse. When I was diagnosed with type two diabetes, my doctor told me not to take my blood sugar just eat the way I should. I did that and I would swim every day. In six weeks I had an A1c test and I had already dropped from eight to below 5.8. That doctor also believed you get so into checking your number that you end up with problems.
Yes, we need to live our life the way we always did before a fib Especially when it is quiet. We need to do what the doctor tells us and take our meds at Cetera. It does not hurt to educate ourselves with what is specifically going on but get the information from your doctor. We can all read about it and quote from articles, but we do not have the base knowledge that our doctors built upon during their education. I see some people get so into doing things even experimenting with medication. It’s only my opinion, but I think it’s foolish to play with that. What could we possibly know that our doctor does not? If you have questions about a treatment or med, talk to your doctor or find a new one. I only have had one Doctor who had made a very bad mistake with me. My opinion followed diagnosis for buying new doctors. FYI. They have at least 10 years of learning how to be a doctor and becoming an EP. The Internet cannot replace that.
I know I’m boring when I say no matter what we do we live life one day at a time because there are no guarantees for anyone at any age no matter what we do.
Hi
The stress test is for you because it sounds that your heart is not settling after exertion.
AF is an irregular heart beat. And an ECHO test should show your Specialist what is happening.
I was diagnosed with a Left Frontal Embolic Stroke with AF causing it. Within 4 days having a Carotid Artery Scans that I that I had Papillary Thyroid Cancer.
So in my case Cancer caused hyperthyroid, AF and clot caused the stroke due to its irregularity.
When do we ever know when we need an operation? Accident or emergency routine. We dont know so only for the sake of this happening we should always be under 100 at rest for any operation.
Some literature I read through here when a H Specialist was talking about the general rule with this guy saying at rest 110 H/R at rest per minute, he is clearly wrong.
Chers JOY
It is normal to fluctuate with activity. My pacemaker adapts and anticipates for that.
You are right that some people confuse the two. Healthy people exercising can get extremely high heart rates. Now, if you are not doing any or it does not go back to down. then you may have an issue. I can go from 80 to 105 walking to the kitchen right now. But when I go and sit back down, it will return to 80. Afib is more than a fast heart rate as you know.
It never crossed my mind that I could have afib until I was told that I did. If anything, I thought it was blood pressure that made me black out not my heart.
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