Hi all, hope everyone is as well as they can be with this debilitating disease. I attended a cardiology appointment today with a new consultant after my symptoms became worse over the last few months. Particularly in relation to a low HR being regularly under 50, feeling faint to the point of almost passing out. The consultant initially done the ECG and the asked what medication I had been on. In 2021 I was put on Bisoprolol 5mg then cut to 2.5 then 1.25. After one episode of low HR and a visit to A+E I was told I may have a sensitivity to the drug. The A+E consultant changed it to Verapamil summer 2022. This didn't really agree with me but I persevered even asking the GP to change which he suggested I don't until seen by a cardiologist. If only appointments were made just like that.
Fast forward to today and I'm told by the cardiologist who himself is an AF sufferer that he would never put anyone on Verapamil for AF. He's going to do an echocardiogram to ensure my heart is still structurally sound. If so he's going to put me onto Fecainide.
Any advice/ thoughts please on this change of medication?
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Hi Jim, over the last few months it's occurred every few days. When first diagnosed in 2016 I had one major episode then other than a few ectopic beats now and again I had nothing. In relation to getting out of it I just let it run its course and it corrects itself. It's more the slow HR rate and feeling dizzy that's concerning me.
The slow rate may be from the beta blockers. Did the cardiologist mention that? Daily flecainide might make sense in your case if your heart is structurally sound. Flecainide is often given with a nodal blocker for safety reasons. That would be a beta blocker or a calcium channel blocker like diltiazem. In your case, my guess is they would not use a beta blocker.
With me, Flecainide stopped my afib (and aflutter) episodes almost completely. Been on it for a year. However, not thrilled to be on it for life, so I'm having an ablation pretty soon. There are some newer and perhaps safer ablations just coming out like pulse field ablation (PFA) but I'm in my 70's so don't want to wait much longer. I'll be doing the Cryo balloon which has now caught up statistically to the success rate of rf ablation. It is also less dependent on the operator and can be done with lighter anesthesia.
Hi Jim. Many thanks for your knowledge. The Dr did mention that the Verapamil as a calcium chanel blocker could be the cause of low HR and something he wouldn't predcribe for AF alone. I am 56 and until recently attended the gym 4 times a week in addition to spin classes. In the last few months I'm tired walking the dogs. If my heart is sound and my symptoms are caused by AF alone he has from a quality of life perspective raised the possibility of Ablation using the cryo balloon as you suggested.
None of us like to be on medication’s but if that’s working for you right now, I would be so happy if I were you. Because meds are not working for me. I am having a special kind of pacemaker put in on Monday. Don’t ask me what makes it special. I’m not sure. I am at the beginning of heart failure now because of a high heart rate for so long if I could just take a couple of pills, I would be excited instead of permanent, atypical, flutter, and a fib. My options are pretty much up. I have had the ablations including cryo-and a van of Marshall. Cryo-lasted six months RF a year and a half at 70 I feel it’s too much to handle or wait for anything else in a longer such as the mini maze because I would start all over again with another doctor. A fib is never cured. As far as we know some people are lucky like you with meds, controlling it even with the pacemaker, I believe I am going to be on a blood thinner for life, unless they chose the watchman. I don’t know for sure if we can ever be free of some thing whether it be medicine or a device. I have found eventually my body tolerates the meds to well and they stop working. I am just giving you my situation, and we are all different as you know. I am doing pace and ablate to prevent my heart failure from getting worse. My doctor EP believes things can get better once my heart rate is under control, which the pacemaker will do. That is really the bottom line of whatever they do to us is giving us a normal heart rate to reduce the strain on the heart itself. I wasn’t thrilled about a pacemaker, but it’s one of the shortest route now to avoiding further heart failure, and quality of life.
Whatever route you decide just remember you are going to need something. Best of luck🙏🏻. Monday they will implant my pacemaker it will not be connected for two more weeks to allow it to heal first. Then they will also ablate the AV node, etc..
I agree with much you've said and thank you for sharing. Been putting off ablation for many years, but now seems the right time, because in a blink of an eye I'll be in my 80's and who knows how my body will be able to handle the procedure then. And no guarantee the Flecainide will keep working, plus it triggers my GERD which keeps me on PPIs and the chain goes on and on. Many are able to get off all meds after an ablation, with the exception of AC's (thinners) when needed, but I know not all ablations are not successful but the odds are still in favor. Best of luck with the pacemaker. I know it's improved the quality of life for many.
I will be honest with you. I think an ablation is temporary. Hopefully you’ll be a lucky one that only has trouble in one spot but I am being honest with you. I shoot from the hip just like my doctor does. My original treatment started in Florida. I moved to Texas last year. My first ablation was the cryo- it did not keep me from a fib long because I got another spot of a fib pop out as you know it’s your electrical system for your heart. Picture of the electricity in your house where a piece goes bad or even on your Christmas tree. You fix that part and then the next time you use it there’s another area that goes out that is kind of how we are built. I had the RF six months later. I have a loop recorder and my doctor knew before I did That everything was going crazy again. The RF was pretty good fast recovery and it lasted a year and a half of good living. Unfortunately just before I was moving, I started not feeling right and by the time I got to Texas, I believe I was in for a fib again unfortunately I fell between the cracks . It was not being monitored, and I did not get to see my new EP/cardiologists until March. He scheduled me immediately I thought for a regular ablation, but he ended up doing the procedure. He is the pioneer of called the vein of Marshall. You can check it out and Dr. V at Houston Methodist DeBakey cardiology on the web. Long story short, I was briefly left with only a flutter then I became so ill I could not walk at Cetera. I kept having problems with his staff trying to get through to him or his nurse. I had words with a medical secretary and I was ostracized. Evidently I could not get a callback etc. I know it sounds crazy. He is world known and to me he may be the big shot but he should know what’s going on with his patients He either did and ignored me. Or did not know. I say shame on him but I did not have the strength to fight all of this or do anything for several months. I kept thinking I would hear from him. Meanwhile, my heart rate was in the 150s all of this time the medication obviously was not working. I really became convinced I was going to die. In Florida I was treated like a princess here I really didn’t know what to do next. If not for the lady delivering mail, I could be gone by now. Her mom and dad used the doctor I went to. Within a week he was giving me a cardioversion and for 3 1/2 weeks I was in heaven. He took me off one of the medication’s that the star in Houston had me on because he said it doesn’t work if you are not NSR Unfortunately as fast as it made me feel wonderful. It stopped working. I was turned over to the EP who did another cardioversion Christmas week. I was going to be in new medication and in the hospital several days it never worked. they tried me three times. Shocking me, but nothing so everything was canceled with the meds
At at my two week. Follow up my EP spoke to me about a pacemaker which I was dead set against. But then I decided I liked his way of thinking he cares about giving quality of life From what I can understand. A new way of thinking, is not repeating things over and over again. I have a lot of scarring on my heart from previous ablations. I only had three FYI, but the vein of Marshall also had hybrid done. When the second cardioversion failed with three sharks, which is the max they can give he does not fill doing more of that is going to help. As a former EMT I view it as trying to bring back someone who had a heart attack. You can only do so much.
It is only a couple of years with a fib, but physically and mentally I am exhausted. I cannot walk even across the kitchen without exhaustion and pain or do simple things like putting laundry in. Even on the couch I can be miserable at times with pain so I am having the pacemaker which my doctor feels is going to make things so much better. There are no guarantees with anything but at least for me. This is now what I consider the right choice.
You are not wrong to question things. For all of you out there about to have an ablation for the first time just remember day by day they find new ways to make us better so I am sending prayers to all of you that you end up doing great.
I'm prepared for more than one ablation, but like I said, I want to do that now, before I get much older and may not be able to tolerate the procedure as well. If younger, I would wait for Pulse Field Ablation, or beyond, like you suggest. Yes, ablations don't always work, but the statistics are still in favor.
There have been a few posters who have had Pulse Field - they posted recently but sorry I can’t remember who but they were in the UK. Try a search in the box.
Thanks. But unfortunately PFA is only being offered in trial in the US probably for at least another year or two. For some reason, we're a bit slower out of the box than you folks on many meds and procedures.
oh no I do no suggest that. I am going to pacemaker rather than ask for a mini for the same reason. I feel I cannot wait to be able to get one or have it not work. I feel this is my best one shot for qol. Best of luck again. I was 67 when I got my first ablation
Your story sounds very similar to mine. Im feeling very well since my AV node ablation after many years of unrelenting AF with life restricting symptoms. I wish the doctors had been forthcoming in letting me know there is no cure for AF and that it gets worse over time. I had 2 ablations that made it manageable for awhile with medications, but then new "rogue" currents were created one in too dangerous of a location to ablate so AV Node ablation was all that was left for me a 77 years. I wish you well going forward.
thank you so much for sharing. Yes you do sound like me. New stuff is not a guarantee either. The ablation and procedure in Houston made me worse. I think if nothing else it did. Nothing for me a week after that is when I could not walk across the kitchen without feeling like I would black out with pain and dizziness, as well as losing vision on one side. It was like having a car parked on my chest taking my breath away. Following the field cardioversion Christmas week I was put on digoxin and Metropolol succrate XL Originally I was supposed to stay in the hospital and be put on Tikosyn but when I did not go NSR that was canceled. That is when I cried because I really had hope and heaven just had 3 1/2 weeks of feeling great. I want it so much more of that like we all do. The digoxin worked fast, putting me into NSR. It actually got me is low is 60. Wow what a difference. Unfortunately it lasted less than two weeks. I let my doctor know, and he doubled the dose of both again. It worked, but again it failed at the end of the month. After the medicine failed the first time, he spoke to me about a special pacemaker. I’m still not sure what makes a difference or special, I believe it has something to do with the leads. He said a few years ago they didn’t have it and I would end up in heart failure. I am at the beginning of it anyway but according to him that can change because my heart failure is because of the length of time, having such a high heart rate , I was in the 150s since April until my cardioversion. I have nothing else bad going on with my heart at this time which is what helps. The procedure in April was behind my heart. It is only a couple of years old also to be honest, I feel I may have been used a little bit as a guinea pig , because of what I have read I am older than most who have had this so far. Anyway, that’s behind me. I’m glad to hear what you said about the AV node etc my EP believes I am going to have quality of life. Again the other day at the hospital for pre-reg I heard nothing but amazing things about him. The latest nurse told me how lucky the hospital is to have him. He is young, but I have a feeling he is a bit of a prodigy. He is very intense when he talks about anything about our hearts, I feel as if it’s truly his passion to make us better. I was going for another opinion, and even thought of going back to Houston but I have the gut feeling of this Dr being right for me.
Well Monday, they will put it in. Two weeks later they will hook me up. I’m wondering if they will get Wi-Fi on it and maybe satellite radio lol. I am trying to be positive and I know anything up is better than what I have now.
Thank you for writing and sharing your info. I don’t know many people with pacemakers.
Pacemaker was the easiest an best decision I ever made and not looked back since. I have RST - ReSynchronisation Therapy & stopped my AF immediately, so I didn’t go ahead with the AV node ablation - that was in 2018. My last check I have less than 1%AF in last 12 months. I have an app on my phone which sends reports to my clinic.
Hope yours is as successful. The implant itself was done under local anaesthetic & IV Paracetamol because I can’t have sedation and GA is too risky.
I had a very good experience with recovery, a little sore and can’t lift arm above shoulder for 6 weeks so I had some stiffness because I have had dislocation in that shoulder so didn’t like being limited but much easier than my Expectations.
you just made my day I feel it’s the right answer.I didn’t talk myself into it, I researched and I really thought about what do I want in my life etc. then when I met with my EP again he answered questions I had before I even asked. He is so passionate about giving us back quality of life and not just temporary like pills can do. I’m not sure what makes the one I’m getting different or special but he said a couple of years ago it did not exist and I would end up in full heart failure. It will be under general as everything has been. I am glad for that. They do just enough , and seem to have it perfectly timed for when I wake up. I will let you know how it goes. They make it sound as though it will be very painful and nothing will really be different my first two weeks until it is connected. I get that it’s like putting an engine in a car and not connecting it. How do you expect it to run? Lol I never thought you could fill better so fast until I had my cardioversion the first time, no way did I expect to open my eyes with a smile on my face feeling so good and then I turned around and saw I had gone from 158 heart rate to 82 already. How soon did you feel a difference? The past week has been one of the worst for me. I feel is though I’m fading away. Today I have been having a very hard time breathing is if I cannot take in enough air, I want to sleep around the clock, and I have no appetite to speak of just thirst, and even that is not what it has been in the past. I feel as though I am dehydrated I am a big water, drinker and sport drink, not energy. The electrolytes seem to be helping, but not much and not for long to be honest, I will be glad when I am on that bed and they put me to sleep.
You have perked me up before and you did it again as have several others. Thank you so much.
I was given a pacemaker in 2013 because my heart was pausing. I had AFib, A Flutter, tachycardia and Bradycardia. Pausing was part of Bradycardia. It was a 2 lead pacemaker, which was replaced in Sep 2021 with a new, much more fancy. It is monitored 24-7 sending info to the company which then relays anything of note to my Electrophysiologist. But a third lead did not come with it so I have the AV Node ablation with a 2 lead. The doctor said he would need to keep a close watch and add a third lead if necessary saying sometimes that third lead becomes necessary. So it is good news for you that you are starting with three leads. You probably know the AV Node ablation does not stop the AFib. It blocks the symptoms. The AFib goes on quietly in the upper chambers while the pacemaker tells the lower chambers when to beat. A year ago I was looking forward to a trip to Hawaii in June with my four grandsons ages 15-20 when I realized I was too weak and short of breath from the constant AFib to even decide what to pack, let alone do it and get to the airport. So I went back to my Electrophysiologist and told him I was done fighting. I just wanted some quality of life for however long I could have it. The trip was fabulous and I was able to keep up quite well and the boys were good about walking with me, and looking out for things that might be hazards…..steep trails, etc.
Early on before my first two ablations I started to cry in the visit to my new Cardiologist. He was concerned and assured me people don’t die from AFib. I told him I wasn’t worried about dying, I was worried about living with it. At that time I was on and off so weak I had to crawl up the stairs and couldnt sit-up in bed and hold a book and read. And I had been on an anti arhythmic medication for 4 years. He immediately made an appointment with his Electrophysiologist associate.
It can be extremely lonely having AFib when your family and friends have no idea of how terrible, unpredictable and frightening it can be. My very closest work colleagues was on me about why don' the doctors just fix it? Give you a pacemaker on, and on and on. I missing a lot of work. I finally realized she was afraid for me and maybe even afraid of losing me. I was afraid too…..I didn’t know anything about it. I think the first cardiologist I had , although nice, was too inexperienced.
I wish you well. I hardly noticed my pacemaker replacement so hopefully yours going in will be easy. If you think of it let me know how you fair.
0h my goodness written that. We spoke before, and realized we were similar, but even so much more now. Finally someone put into words how I feel. I have been trying to fix my bedroom all week to be ready for coming home. Normally simple, but I am overwhelmed and cannot accomplish anything. Even hanging up clothes. I only have tomorrow to get things done. I bought a new bedframe it’s lower and will be easier to make etc. Instead, I am laying here in bed already, and my heart is pounding out of my chest who have done nothing to cause it.
I don’t really have much family I have my cousin I live with, and another one in Florida. The one in Florida is the one that doesn’t understand why they don’t do everything all at once why am not fixed yet etc. I explain there is no cure. I have tried to educate both of them but they don’t get it. I know the one I live with means well he comes up with all these things we’re gonna do when I’m Better after this, I explained I need to heal etc. I try to know as much as I can so if something should happen he knows what to do but I pretty much have it down too. If I can’t talk to you call 911 tell them info on my phone And my medic alert necklace with him. I believe information can be a dangerous thing. As I said, he means well the past week for some reason unless I’m just noticing it more he tends to yell bowed about some thing and it’s startles the heck out of me to the point my heart is pounding, it is usually that my cat has gone upstairs to his area. My cat goes up there because he likes a particular window. There is no reason to make a big thing of it at 3 AM. You probably understand what I mean about being startled and what it does to you . I feel very weepy like a big baby tonight. I do have anxiety and PTSD, as well as severe depression but I am on meds so usually I don’t feel much. I am surprised that I am overwhelmed with emotions right now.
yes part of what my doctor said to me that won me over is exactly what you said about the afib still being there. Just since October, I have been flipping between a fib and a flutter and then ended up with a typical flutter. I’m glad that you said the pain was not all that bad. My cardiac nurse made it sound severe. Maybe they are just concerned because I am so wiped out by this but I would think everyone is when they get to this point. It just wears on you as you know. Thank you for your good thoughts and all of your great information. Thank you for sharing. You know this is where I will come as soon as I feel better whether it be Monday night or when. You also mentioned about the things you were not able to do and I know it well. I like to play silly little games on my phone and I haven’t even been able to do that . The nurse said part of that is lack of oxygen and this is all going to change. I just want to lay on the bed and sleep until it’s over. Big hugs. I have so many great role models here I can’t say thank you enough.
What often happens if HR when in AF rises and Beta Blockers used to control the high HR in AF but when you take it daily is that a pacemaker is suggested so that you can take Bisoprolol to help control the high HR with the PM ensuring your HR doesn’t drop too low. Has that been mentioned?
If your HR is low throughout Af I would question why the need for heart rate at all although if you take Flecainide it is usually recommended you take a Beta Blocker alongside Flecainide to prevent Flec causing Atrial Flutter. Please check this out with your cardiologist.
Before any decision is made ensure you understand the implications, benefits and risks of all the treatment options.
Personally I experienced long term, serious consequences from taking these drugs but they did work for a while. Ablation was not the answer either, had 2 and AF returned after 3 years which is why I urge you to make an informed choice.
All I can say is that when I received a pacemaker I stopped having syncope (fainting) or near syncope as my BP stabilised and my AF burden reduced to 1% from being very symptomatic with AF every other day.
Please do ask questions and your own research. Go to the AFA website and read about various treatment options so you can ask informed questions as this as everyone with AF has an individual experience and therefore different things work for different people.
Many thanks yet again CDreamer. Your responses over the last few weeks have been spot on. I think maybe my ignorance in relation to AF is getting in the way of properly describing my symptoms. I have AF but have not had the vastly increased HR for months which must be restricted by the Verapamil. What I do have in its place are a rising number of what I believe are ectopic heart beats which used to be the precursor of the AF and increased HR. In addition now though are the common episodes of low HR and feeling faint with a foggy head. I think this may be due to the medication. The cardiologist I saw and who as I said was an AF sufferer himself is on flecainide. He did not mention any beta blocker in addition to that but its now a question I shall be asking him. Many thanks again
I don’t know if I will be on any meds in the beginning the pacemaker for me will go in on Monday then lift to heal for a couple of weeks and connected on the 27th as well as the AV ablation. I like the fact that he will be setting the heart rate. This pacemaker will cause my heart to ignore anything but what it tells the heart to do. My doctor plans on setting me between 60 and 70. He said my heart is just exhausted as I am I at this point, and without this, my heart failure will continue to be worse, but he believes this could actually turn me around because we are at the beginning of HF.
I was very much against this at the beginning, knowing it is still a change in my life that I did not want as far as depending on a device. But then I looked at my quality of life and I don’t have any. The biggest change in me was, how much safer I began to feel with my doctor. I very much feel that I am in good hands. It is my gut feeling but also oh my goodness how much I have heard about this man and yet you would never know it when you talk to him. He is passionate about helping those of us like us. He shoots from the hip, very honest. Monday he made it clear. I am not going to feel any difference, except possibly worse at first because of the implant. They are also removing my loop recorder because this pacemaker will replace that and he will be able to check it remotely. he said the majority of the new ones including mine are also capable of having things like MRIs done the best part of all it is that when everything is set and really working, right, I will be able to actually have the back surgery I was supposed to have over a year ago about six weeks after everything is working properly. I am not going to rush to do that. Yes I want the pain behind. It will be my last surgery hopefully on my back since being hit by an 18 wheeler 12 years ago. But I have a feeling I’ll be tired of surgery and they’re not want anymore for a while. The thought of feeling good like I did after my successful cardioversion in October is exciting and hopefully it comes to fruition.
I know the only medication I will end up having to stay on his blood thinner. He said probably for life and that’s fine for me. I have really not had any problems with it. I think what you get from. It is well worth anything else.
thank you all of a sudden I’m a nervous wreck usually I’m very calm with surgeries, etc. I wish it could all be done at one time. The thought of the pain is getting to me. If you know anyone that’s had it done maybe they can let me know just how much pain there really is. They made it a point to tell me how bad I would feel, but that they will be giving me pain medication’s Thank you again for your kindness
For the implant I had virtually no pain, the procedure was done Paracetamol IV and local anaesthesia. Some people seemed to experience bruising, I had very little. The wound was red, sore and swollen following the procedure but well under control with paracetamol. You need to be careful and can’t use your arm for a few days but I wasn’t in pain as I have experienced in other conditions or after deep surgery.
I do hope all goes well for you, I felt better immediately and was in the hospital for just about 6 hours, in at lunchtime and home for dinner, very best wishes.
Today is the first day. I am feeling almost human. They kept me, but that was planned before it was even done. I don’t have the redness, but oh the pain. Even standing up or sitting up, took my breath away and as you know, not using your left arm or hand is really hard, especially trying to get off the bed or out of the chair. Evidently my particular pacemaker is placed differently as are the leads, it is a to lead pacemaker and the doctor said even a millimeter off would be a problem. Thankfully he has a good eye 😊 they also gave me a couple of rounds of antibiotics for prevention. I’m not even sure what else they were monitoring but they were great. They did not drive me crazy but they did monitor me. The bad side of staying there although it may give me a new career lol is the hospital food lol. Oh my goodness I should’ve taken pictures. I am going to be a comedian about hospital food and some of their help. I don’t understand why, but the ones that take the blood sugar test cannot seem to get it right. One in particular went through every finger on one hand and a couple on the other. My fingers are quite plump so they had plenty to get to. Then there was the guy who wanted my food tray, although he held the door while they wheeled me into my room for the first time he came right in and asked for my tray😱😵💫 It reminds me of the guy that kept asking my dad if he was going to drink his milk. The guy had gone into the room after my dad passed did not even bother reading the sign.
Right now dr wants mainly bed rest although I go in next week to have the wound checked. They also removed my loop recorder. I actually feel better on my left side because when I go to the right, maybe it is in my head but it feels like the pacemaker is sliding down to the right. Doctor said if I am laying on the pillow with my arms straight left is OK and then the usual don’t do this and don’t do that with your arm. Lol I think someone wrote those instructions as a joke. Try to pull your pants up or down without both hands especially when you’re still groggy lol
I will say, as you had said to me about it being a good thing to do. My doctor is very pleased right now, and said if it stays, and the second part goes as well that this could be life-changing for me. Light at the end of the tunnel is what I am looking at and it’s beautiful.
thank you so much again for your words before I went in Monday
I was wondering how you did! It does sound almost impossible to get dressed etc. without using that arm. Really hoping that this will make all the difference for you - especially with the ablate bit, but maybe it can help a bit even before that.
hi hon unfortunately my doctor told me in advance I would probably feel worse and he was right 😵💫 all I’m dealing with right now is a surgery, placing the pacemaker and leads. Not knowing where they usually go I don’t really understand but he made it clear that the placement of pacemaker and leads is not the norm and a millimeter off can cause a problem. All I can say is so far so good when I left the hospital. Somehow they checked it and he was very pleased as was the tech, I am not connected so it’s like a car battery waiting to be connected. Just sitting there feeling very heavy at the moment. Monday I go to the nurse who will check my incisions and change my dressing. The following Monday the 20th is the finale where I go live lol I requested Wi-Fi and a phone charger but they said it was an extra charge lol. That is when they are going to do the ablation and from that moment on my doctor said I will strictly be relying on the pacemaker for my heart. That was the part that’s a little bit scary because we all have had issues with electronics, but anything else to be better than the way I have been, and am right now. 1 March my doctor and tech will be setting it up. My doctor said if everything goes well, it could be life-changing. When I mentioned how I felt with my successful cardioversion, the tech said that is somewhat like how I should feel. I shared at the time it was like a miracle. I had gone in to the hospital that day in a wheelchair and I walked out for the first time I was able to walk my dog on our property to be able to do things like that again I would be a happy woman
When this is over I hope I will be able to tell everyone that at least for me it was the perfect choice. There are new pacemakers now. My doctor told me a couple of years ago. I would’ve ended up in full heart failure, but with this, it can actually turn around. He is one of the ones that is up-and-coming at the Heart institute of Texas. He is not afraid to use the best on us even though the hospitals seem to prefer repeated procedures that do not work or don’t work for long. He refuses to just continue to scar of the heart even if we are older he gets that we still want quality of life and we need it and he wants it for us. I had a wonderful doctor in Florida, but I believe this man is saving my life and giving me life 😊
PS obviously I will be connected and have some type of settings next Monday lol otherwise I won’t be able to write my novels again because my AV node will be gone
I had planned on a different EP, but my cardiologist asked me to meet with this man. I was still getting a second opinion, but this doctor won me over so much. I just know he was the one with her. I am sitting in the lobby or dealing with medical staff. The minute I mention his name something nice comes out of their mouth, one woman knows him from church and mentioned how wonderful he and his family are. He has some great YouTube videos I think for Facebook nothing fancy I happened to come across it when I was reading up on him. Dr Aditya Saini EP. Heart Institute of East Texas. Lol somewhere in there it even mentioned some thing that he won on Jeopardy. I think when he was in college or med school. 😊 very sweet and humble but when he talks you listen, and you know he is honest.
I only had my heart rate dropped once, and that is right after the doctor put me on digoxin. By dropping I mean down to 60. Since the big procedure in April, I have been steady tachycardia in the 150s close to 160. I don’t mean once in a while I mean every reading. Unable to walk or even really stand up without almost blacking out and a pain in my chest, as if a car parked on me, at this point, I have lots of weakness in my arms as well sometimes even holding a sandwich is exhausting. I tried to grocery shop using the cart like a walker, but my arms cannot push the cart for more than a few feet. Right now not only is my heart thumping away hard, but it hurts. It says if I can feel my heart in my head. I did just take my meds for the night again minus my blood thinner because I need to be off at three days time to try to go to sleep. I think I am going to dream about all the good stuff you all have told. me 😊
I took Flecainide for a while without beta blocker for this reason. HR would dip into the thirties at times. Passing out sensations as well. I described Flecainide as turning down the volume on the symptoms. No issues with taking it at all. Had my first ablation in August last year, so I'm now off the Flecainide. HOWEVER, need an electrophysiology study to find out where the tachycardia is coming from.
It’s absolutely no fun at all having these AF symptoms as I know , I had tried all the techniques & nothing would stop my episodes. My lifestyle is good & im not overweight, I feel your pain I really do.
I couldn’t get on with bisopralol for similar reasons to you . I was put on diltiazem which doesn’t have such a lowering affect on the HR according to my cardiologist. Having had a CT angio scan to confirm my vessels weren’t blocked I started flecanide … which he said is a good combination. I have never felt better ! Totally AF free for 3 weeks now & I can function, I’m gradually building up my stamina again. At 55 I’m not ready for the ablation route yet as theses meds work well. So far so good!
Maybe chat to the cardiologist again about it , I did have to dig deep & see a private cardiologist to get things moving otherwise I’d still be waiting for a 48 hour tape from back in November. It was only for the consultation & to get meds sorted & consolidate all the info & tests from the NHS.
Hi Snigetts, I am 56 and until the last few months was attending the gym 4 times a week. Prior to Verapamil I was also attending spin classes. For the last 6 weeks I haven't been near the gym concerned that I may have a structural problem with my heart. Having had the responses that I've had on this forum I'm starting to think it's maybe the medication that is causing the symptoms. I too was thinking I was "too young" to go down the ablation-pacemaker route however I have started thinking more about my quality of life at the moment and not so much the quantity of life I have left. Hopefully a change in medication will do the trick. You are right about going down the private route. If my wife hadn't changed jobs and as a benefit received private health care I would still be waiting for any treatment.
I like the way you think and I will tell you my story about my new Doctor Who is what I believe an up-and-coming one at the heart institute of eastern Texas and Baylor St Lukes. He is young and forward, thinking and shoots from the hip. I have found him to be brilliant. I have not spoken to one person whether it was in the lobby a nurse or whomever that does not rave about him. The nurses usually have 30 years or so on them for them to talk about a doctor like this is unusual, but more than one has it is not that he is a charming personality. He is very humble and quiet, unless you talk about certain subjects regarding the heart with him. He has very strong, ethics and passion to make us better.
I have had a fib about 2 1/2 years and I have already had just about everything from cryo- to RF and the pioneer of vein of Marshall and hybrid alcohol ablation in Houston at DeBakey cardiology part of Houston Methodist. I also had two cardioversions. One was amazing for 3 1/2 weeks. I felt as though there was nothing wrong with me, and I started feeling that way when I opened my eyes from the procedure. I almost felt like a kid again I giggled. The second one they tried with three shocks and nothing I’ve been on every medication you can probably think of that is popular with the EP circle. They cut back and held back on nothing after the failure my doctor spoke with me about a pacemaker. The minute he said the word my mind shut and I said to myself oh no, that will end my life for sure. As far as quality he was going to see me in two weeks and over those two weeks people here and things I read, started making sense to me. Most of all what he said to me made sense.
There is no cure for a fib. Everything being done for us, and to us is to control it so we have a quality of life. He does not believe in doing the same things over and over again. If it didn’t work, that’s it. My heart is exhausted I am in the beginning of heart failure now, because, I had tachycardia for so long constant in the 150s since April. The only reprieve was the successful cardioversion. I woke up to a heart rate of 82 from the 158 I had entered with.
The pacemaker will be said between 60 and 70 for my heart rate. It is a special pacemaker. I don’t know what makes it different. Monday it is being put in but then I must wait two weeks for the AV node to be ablated and to be hooked up. He said they do this, so that if the wires move while I am healing it is easier to repair instead of having to fix everything and reset. Having the foreign bodies in your heart obviously is not normal. In time the body grows tissue over the leads that will keep it secure on the 27th they will do everything else if all goes well. As I said, he shoots from the hip, sometimes almost too honest, but I like it. He said you will still have a fib and a typical flutter, but it will no longer matter because the pacemaker will be directing your heart not the AV node where there are problems. he seems to think almost immediately. I am going to feel a difference for the better. He said your heart and you have been through enough for too long. That’s why you are in the beginning of heart failure. I do not have any other heart issues FYI at this time. He also believes even though we can go in and out of. NSR we are still putting strain on our heart each time we go back to afib, etc. He wants to put a stop to all of that IM 70 I want whatever quality of life I can have left and don’t want to waste it with medicines etc. all of which are temporary. Ablations are good as long as you don’t have other spots act up. It’s like having a hole in your garden hose. You can tape it up then get a hole somewhere else in the same hose that’s the way I look at it. My ablations are still holding. It was not the failure of those that continues a fib and flutter at your age. Now, if your doctor thought pacemaker was a good idea I would go for it. I’m not thrilled about it, but the new ones are quite some thing the old things of having to keep away from different items and not being able to get MRIs, etc. is pretty much over most of them are quite different including the one I’m getting. I wanted to make sure I could get MRIs because I was supposed to have back surgery when I got to Texas but instead a fib came back uglier than ever know surgeon will touch you when your heart rate is messed up. I am told once everything is settled I will be able to have back surgery six weeks after. I probably won’t run to get it. I think I am surgeried lol my word OUT. What I am looking forward to is feeling normal just to be able to do simple things like grocery shop and wash the dishes or do laundry and especially to walk with my dog and play with him.
I have had two doctors let me know that they feel all of these ablations, meds etc just drag out the inevitable and take away from our lives. He said he could go on and do ablation after ablation, etc. and make lots of money. That’s not why he chose to do what he does. Now you have to realize he’s very humble and soft-spoken when he’s saying this not arrogant. I can’t imagine that all of the things they do to us to put us into normal rhythm is really very good for our hearts and bodies. Three shocks to my heart. That is the max, and when I was in the field, you stopped working on someone after that, and considered them gone. Yeah I know people that have had a dozen cardioversions as if it were normal to jumpstart our hearts every so often.
I am a nervous wreck tonight. Perhaps I had too long to think about this and going in Monday but I am not regretting my decision of going in to have this done. Right now I can barely walk down the hall to my bedroom and whatever I do, I end up feeling ill or dizzy no matter what it is. I have no quality of life now this is one of the best chances I have of getting it back. Best of luck. I would never push anyone to do anything they don’t want to but after having all those things done I wish I could’ve skipped it and go and straight to pacemaker now we will see if I say that in a month when it’s all hooked up lol.
Sounds like a plan and is worth trying. Ask if you can start with lowest dose is my view. 50mg X2. It may well suit you as its an anti arrhythmic and ought t8 bring your HR up a little. You won't be able to take it unless your heart is structurally sound. And as with all meds it's an individual thing. Glad you're getting some decent attention.
Yes my dose of flecanide is only 50mg twice a day but it works & feeling so much better not having episodes of crazy AF & other weird heart bumps . I was very scared of taking it as Dr Google was scaring me . My echo showed slight leaky valves and LAE, Cardio said it was normal with AF & important to control it more. The cardiologist was great & listened to my concerns & reassured me that for now this combination of meds was right for me.
I’m not on an anticoagulant either , every single dr I’ve spoken to says no .. not yet, it’s not needed as risk out weighs the benefits at the moment 😬
Flecainide is a lot better. Verapamil (calcium channel blocker group of meds) really only lower the heart rate artificially. I wouldn't take it. It was the first drug that gave me when I was diagnosed with AF and it started the downward spiral I now have with my digestion. Almost all western medicines are not targeted, that is, they affect the whole body. In this case, it doesn't allow affect the heart, but all the smooth muscle tissue in the body. This caused me to have Hiatus Hernia which then caused me to have acid reflux and lots of digestion issues. Over time, it kept getting worse and now I have methane dominant SIBO, gastroparesia, and other horrible digestive issues.
In my opinion? Never hesitate to look at a healthy lifestyle and supplements to help you on your journey out of effing AF. Not a single cardiologist ever told me about electrolytes, yet I have cardioverted dozens of times ON MY OWN by just taking Magnesium Chloride and things like DIORALYTE. Also work on your stress. Remove anything and ANYONE that stresses you. Stress it the number one factor for AF (and many other diseases), so start doing yoga, do meditation (seems bogus, but it has worked for me truthfully), start weight training (carefully and slowly at first), do cardio every day, rest when you feel ill or very tired and just take it easy and SMILE EVERY DAY.
Spend time in nature or near rivers and the ocean/sea. I almost never got AF when I was near the ocean/sea. I took Flecainide for many years and it works quite well but long term may start causing AF on its own (paradoxical reaction) and it does cause some other issues, but nowhere near as bad as Verapamil does.
Change your diet to avoid ALL VEGETABLE OILS (except organic extra virgin olive oil and organic coconut oil). All the rest, despite the bullshit from the media, are shit. They cause inflammation in the body which translates to stress. Avoid all sugar but even more fake sweeteners like aspartame and acelsufame-K, as these have sent me to the hospital with AF more than once. And they also cause diabetes much faster than just ingesting plain sugar.
Try to eat in a six to eight hour window at most every day, with the rest of the hours not eating anything except drinking plain water or herbal teas. This helps the body repair and use apoptosis to eliminate bad or aging cells.
That is a high level of what I would recommend to you mate. All the best!
Tarikor thanks. I think you may be spot on about calcium chanel blockers. I had previously existing stomach problems prior to taking verapamil. Diverticulitis and Gastritis. I only started having episodes of heartburn, GERD and what I feel is an imbalance within my digestive system after commencing the ccb. Its a vicious circle though as I believe the episodes of heartburn etc trigger episodes of AF. Interesting about the DIORALYTE and Magnesium Chloride. Can you tell me more about that?
Research the importance of electrolytes balance - some people do well on potassium rich foods whilst others need more magnesium. When talking about AF and electrolytes it’s about balance. Lifestyle measures to help AF is a LOT more than keeping weight down & being active but it’s a great start!
Dioralyte is available in the UK and it has Glucose, Potassium, Sodium and Bicarbonate. It helped me through dozens if not hundreds of potential AF breakthroughs, in many cases avoiding AF from starting altogether. I am unable to find anything comparable in all of Australia as the bastards down here put artificial sweeteners in everything. I am not kidding when I say that Aspartame is deadly for Afibbers. Put me in the hospital several times, twice in the US where they use gargantuan amounts of it in many foods and drinks.
Magnesium Chloride and Magnesium Citrate, are the types of Magnesium I have used for over 15 years with great success. I take Citrate version once or twice daily and will have the Chloride one (liquid type) sometimes at night if I am feeling that special feeling us Afibbers feel when you can feel your heart up to no good. It usually takes just a few minutes to calm down. Also helps with sleep.
If you can tolerate it and have no issues with it, try coconut water as well, just make sure it is organic with NOTHING added. Has tons of minerals and works just as well as any electrolyte solution. Stay away from Gatorade, Powerade and all garbage. They are loaded with sugar and artificial sweeteners, flavours and colours, none of them any good for your heart.
If you have digestive issues, try beef bone broth and chicken bone/carcass broth, to help rebuild/repair/sustain the lining of your stomach, small intestines and colon. Works wonders. Takes months though, if you have been years taking shitty drugs like NSAIDS, aspirin, Calcium Channel Blockers, anti-depressants, etc. so be patient.
Drink plenty of fluids BUT be careful to not drink too much either as you dilute the salts in your body that way. Bit of a balancing act. As long as you drink at least two litres (adjusting for physical activity and sweating) you should be alright.
Ask away if you need anything else mate, take care!
sure do, but having a blood test at an annual or bi-annual check up mean absolutely nothing when you have an AF. Let me explain. Many (not all) of my AFs were related to low potassium. Mostly the morning after sweating like a pig the day before, whether work related, gym, running to a bus stop to avoid missing the bus, etc. The next day I would either wake up early with AF or have it at one point. When they did the bloods at the emergency department (A and E in the UK), my potassium would almost always be low. Not once did any cardiologist of mine (saw Cardiologists in the UK, in Spain, in South Africa, in Cape Verde, etc.) ever mention eating healthy foods or keeping my electrolytes balanced. I did all that research on my own. I found out on my own that taking Magnesium Chloride at night diluted in water would significantly lessen the chances of having a night time AF. I found that having a small banana with a slice of bread in the middle of the night when I woke up with palpitations or tachycardia to literally stop my heart progressing into AF. Always worked. Using transdermal Magnesium sprays also worked wonders, but not as well as taking it orally, in my own experience.
So, whenever I exercised, or sweated too much on the train or bus (damn you London public transport without AC! hehehehe) I would PROACTIVELY take extra electrolytes which helped stave off any AF episodes.
Also, people with AF, due to the drugs they give us, end up having one form of digestive issues or other and what this means is that you end up having problems ASSIMILATING a lot of minerals from your food. This means that even if you eat healthy you may not be taking in enough magnesium, potassium, etc. from your foods which can then impact your heart rate and rhythm. This is where the use of supplements help and is what I did.
Ideally, I would like to work on fixing my gut (very long process) so I don't have to take so many supplements, but with my heart being what it is, I will have to continue taking electrolytes for the forseeable future.
I have never taken supplements apart from the usual vitamins, C, B and D (prescribed for my osteopenic bones. I took a bisphosphonate for a while)and hardly ever sweat even though I live in South Africa which as you know can get very hot. I have familial AF my late father had it and so do my 4 sisters who are still living in the UK - it is caused by certain faulty genes, is asymptomatic and usually diagnosed by chance later in life. I'm sure there are sub categories of AF apart from the ones commonly listed. My son who is 53 has always been a competition canoeist, he was in the team that represented South Africa in white water rafting in South America when Camel still held the competition, was diagnosed by a fellow canoeist who is a cardiologist 17 years ago, and had an ablation in Cape Town. He takes no medication, still canoes and hikes and cycles and although the general feeling is that AF is incurable , he has been told he is cured - we will see. My cardiologist has told me that a large percentage of his AF patients are canoeists or extreme athletes, which makes me wonder if there is a sub- category that covers extreme sportsmen and in their case it is curable. Time will tell if my son has inherited the familial gene, but he believes he is cured. I'm pleased to hear that you have worked out a dietary and supplement regimen that helps you, BTW I have a banana and commercially produced plain double cream yoghurt for my breakfast most days !
I have found that Flecainide is a miracle drug. I know I've heard lots of reports that it is toxic/blackbox etc, but in all honesty it turned round my episodes of afib/tachycardia. (although I have had an attack recently which lasted from 28th December to last week, but...took an extra flecainide and cleared eventually). However I was given 1.25 bisoprolol to go with it. My heart rate is always in the 40's during the day and what it goes down to in the night I don't know, but have been told to stay on the bisoprolol because of the occasional tachycardia. I have read that the medics don't like to give flecainide without checking that the heart is sound and at the time of me going on it, no one did check!!!!!
Recently from an echocardiogram it was found I have a PFO (hole in the heart) and mitral and triscupid valves regurgitating, pulmonary hypertension but no one has said to stop the flecainide?!??
Soooo maybe flecainide may be fine for you and you have relief from all your problems. I do hope so for you
Thanks Pat. It's hard knowing what to believe about drugs when you go on line with conflicting information. Hearing about the drug from people who have personal experience of it is always better I think. I can only try the Flecainide and hope it does the trick.Willie
I have found flecanide very effective for several years,both as Pill in pocket and maintanance.Few side effects. AF got the upper hand in the end but flecanide was very good until then.
I could not tolerate Beta Blockers, 1.25mg bisoprolol put me to sleep in 40 mins for a few hours, and had other nasty side effects inc very low heart rate ( for me). Atenolol ( another BB( was also not good but better than bisoprolol. So I went onto VERAPAMIL HALF SECURON. 120 mg mod release. Only rate control drug I took that had no side effects. I took it for 20 months ish, but my AFib progressed and increased in frequency and I was put on Flecainide rhythm control, and changed to Diltiazem ( another Calcium channel blocker) for rate control ( I was always fast rate, 165bpm ish resting) in AFib).
When on verapamil I also got a supply of 40mg Normal release tabs. I used these if I went into AFIB in an attempt to further lower the rate to avoid going to A&E.
What your EP appears to be doing is giving you a rhythm control drug to keep you NSR. I understand most ( not all) people take a rate control drug with flecainide, but as you apoear to have low rate that is not necessary.
I got sick of drugs and side effects, and the faff of planning around it if going away for work or holidays and had an ablation which has held for 5 years so far without taking any drugs.
Not medically trained, just my experience with my AFib
I didn't get on with any of these medications or any other types of beta blockers, calcium channel blockers or other rate control medication. I had low rate persistent AF and they took my HR too low. I now have permanent low rate AF and just use apixaban.
Hi. Your post rang a bell for me - low HR and weakness , heart pronounced good but poor signalling and put on beta blockers.
Here the similarity ends as continuing to feel unwell was switched to Flecainide and suffered three syncope blackouts in three days so put back on Bisoprolol and after a pointless Holter check was given an implanted loop recorder. Syncope faints/blackouts (up to 14 second stoppages) put me in A&E and examination of the loop recorder record meant three days later I got my Pacemaker.
7 years later I am fine, my PM battery level is still 45% and my fibrillation level stands at a consistent 96% (remember that most AF progresses from occasional (paroxysmal) to Persistent to Permanent). So no Cardioversion or repeated Ablations and I am fine and live a 'normal' life. (I keep taking the Bisoprolol as although it lowers my BP slightly, my Cardiac consultant sees no reason to change). OK I no longer run marathons and rarely run at all, walking is slower, and hills keep getting steeper, but I wake up every day and life goes on - 80 this year and looking forward to another 20.............
Thanks and good to hear that the PM has done the business for you quanglewangle. I am certainly not averse to a PM if it was going to improve the quality of my life. Another bit of metal in my body to accompany a metal hip wouldn't bother me as long as it worked even at 56.
Thanks Joy. My HR seems to change in waves throughout the day so my low HR is not just at night or early morning. It goes low when I am sitting doing nothing such as watching TV or as happened on holiday recently sitting at a table after breakfast.When first diagnosed with AF my HR always went up so I'm hoping it's just the medication that's caused this changed as opposed to the AF itself getting worse.
I've just had a call today so my echocardiogram is taking place on 28th Feb so will see what happens then. As far as the CCB is concerned I've not really been good on it from the start and as I said the cardiologist was surprised also.He is doing the echo himself so I have a few additional questions for him after reading the responses I've had to this post.
I have learnt as I put myself back on only Bisoprolol For Dec/Jan because of low H/R day until 12 noon, it was not covering my BP. and at noon up H/R went.
Bisoprolol is not dramatic to lower your H/R but it helps some on BP and a little on rhythmn.
A CCB is dramatic on H/R by lowering it but not so much on 24 hour to cover on BP.
Well that's me but if you researched the prior BP and H/R before you started CCB then make a note. My introduction of Diltiazem was an instant drop within 2 hours over 2 days of 105 beats per minute. So dosage was reduced to120mg down from 180mg and separating Bisoprolol until PM. This worked.
But one does not want to mess with high doses of CCB. 360mg is the normal dose!
My Heart Specialist put in my report when his appointment ended that the 180mg Diltiazen could be increased! Really I was light headed at 180mg and the drop of 105!
Of course twinking to get it right for you is best. Not sure about Ver...... CCB dosage.
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