HiI've been reading all the posts for 5 years but never asked anything until today.
I was diagnosed with lone perm afib 6 years ago, i was 64. I was totally asymtomatic but advised to take a anticoagulant and beta blocker.
I tried a couple of anticoags before settling on eliquis.
I could not tolerate beta blocker (bisoprolol) and tried another. This also proved intolerable. I have tried Diltiazem in several forms ( sustained rel, SR and XL in several strengths). I am also unable to tolerate these.
On both BB and CCB my side effects have been awful. Sever tiredness fluey symptoms diareah and others.
My question is.
Do I take these meds to reduce my HR by 10 points from 90 to 80 ish and BP by similar amount but to feel like a complete zombie and generally unwell or not take anything and live life feeling fine but with higher than normal bp and hr.
TBH in my personal opinion I would like to enjoy hols and a glass on wine ect and
Live with enjoyment rather than feeling
Useless.
I would appreciate others thoughts.
Thanks
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fodgreen
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To quote part of your text ..... "not take anything and live life feeling fine but with higher than normal bp and hr."
I would do exactly that but if you can monitor the ongoing situation very carefully and be mindful of what you consider as any abnormal changes.
I think most resource material puts a normal HR range as 60 to 100 bpm. That being the case even 90 bpm while being at the top end of the normal range would not alarm too many GP's.
That said and to put my comments into balance my HR in the years leading up to my AF diagnosis in 2010 was in the range 88 to 95 bpm. I now know it wasn't the constant high HR that caused the AF but a dysfunctional vagal nerve, aggravated by food. I know you can't cope with Bisoprolol, and in that sense I am fortunate as I can and my current era HR is now around 64 to 67 bpm.
Thanks for your advice john. I really wish I could cope with the meds. It's noCoincidence that both my Sisters have the same problems coping with medicines must be in our genes.?
I am always surprised at the comments about the heart rate being up to 100. 100 means tachycardia putting strain on your heart. The higher the number the more your heart is working and sooner or later it gets exhausted. I am in the beginning of heart failure, and also just got a PM and AV node ablation. The heart failure is a result of continued high heart rate. I would seriously think about this when it comes to not taking meds. Your doctor is the only one that can tell you for sure what to do but how someone can save 60 to 100 is a healthy range I think I would question. That is quite a space between the two numbers. My p.m. is set for 80. However, if everything checks out OK this week, they will lower it to 70 and eventually down to 60.
Hi DawnI read an article recently that said for People over 70 a HR of below 115 bpm should be considered satisfactory. My problem is solely about QOL. What point is living feeling downright awful for 10 yrs or 5 years enjoying yourself. I would love to just take the ccb and feel fine but I don't. I was informed by gp that perm afib was was worth treating with cardio version or ablation because it won't work.
I agree it’s about quality of life. I lived since last April to this past October with heart rate in the 150s on a constant basis and it was hell. Any attempt to move brought crushing chest pains, breathlessness, nausea, dizziness, and more. I just wanted to throw myself on the floor and not move. That is not living. I did not have a clue as to why I was even still breathing. I was feeling that bad. I was stuck in a situation with a bad doctor, thankfully in October I was blessed with finding my new one, and it was all good for the most part after that.
I had a cardioversion that failed and was put on digoxen, which helped. It at least brought my heart rate down to the 100 but then crept up to 120s. This is why I have such a strong reaction to them saying those rates are acceptable because they certainly did nothing for me. For whatever reason medication’s do not last with me for more than a few weeks. My digoxen was doubled, and again I got some relief, but only for two weeks again. We had already spoken about a pacemaker. FYI, so the digoxen was considered a temporary help.
I am in the beginning of heart failure, because of the extended amount of time in tachycardia. As you know that’s heart rate over 100. I can only speak of my experience, but I don’t see any way that your heart working that hard can be a good thing. It certainly was not for me. My doctor said I had had enough, and so has my heart, which is why we went with the pacemaker. My future would only consist of further heart failure, and the next step after that is transplant. I don’t consider those options. This is why I don’t understand. A high heart rate being considered good. It’s just my opinion because of my own personal journey. Things are not perfect yet, but it’s only been a month. The fact that I can stand up right now and walk to the other room makes me happy so many changes to my body within a short amount of time and it’s all for the better. As we know there’s no cure, but even though I would love to have perfect again, and some days I have phenomenal feeling of health, I will take any of this compared to a month ago. as most of us know our emotions go up and down with a fib and I also have a typical flutter which is not helped by a pacemaker. Sometimes I get angry and sad but I have decided to make my lemons into lemonade with lots of sugar that makes me smile. They say pain has no memory but maybe we need to keep a little of the memory so we appreciate the good stuff. Yes I am greedy. I want to be normally healthy like I once was. That’s not gonna happen, but we also age and things change. I am going to be grateful that in a few minutes, I am going to go to the kitchen to get myself some water. A month ago that would’ve seemed impossible and torture us to do. I saw it mentioned the doctors did not treat under 100 for a heart rate but that has not been the case for me which is why I have made my statement says I have. Once again, we are all so different and there’s a lot of inconsistency out there with doctors. my first cardioversion showed me the difference when the heart rate is below 100. I woke to a heart rate of 82. Instead of going to the car in a wheelchair away that I had gone in, I walked out. With the end a day or so I was walking my dog Around the acre of property we have. I felt like a cartoon suddenly I wanted to skip around and sing La La La. I felt so good. It only lasted 3 1/2 weeks but it was heaven. That is the difference with heart rate with me. I was a little letdown after my pacemaker was fitted because I did expect the same feeling. 😵💫😱 now I know that with the AV node ablation, etc. my body needs time to heal up to six months possibly. It’s not the same as a cardioversion because we get poked around in there and our heart was not thrilled about it. Lol it makes sense to me so right now it’s one day at a time. I am breathing. Normally I have no pain in my chest and I can walk to the kitchen and more. I will take it and be thankful.
I am an oldie and I grew up in the day when a respectable HR was around 60 to 70 bpm. When I fell into step with the modern world when I was diagnosed with AF I learned that the new respectable HR was 60 to 100. I have checked online with the UK NICE organisation and British Heart foundation and they are promoting these number values. My feelings about these 'New Age' values are the same as yours ........... its a bundle of trouble waiting to happen.
My body functions best at 72 bpm, my Beta blocker Bisoprolol 5mg daily at night is consistently giving me 64 to 67 bpm daytime resting and 55 to 58 bpm , night time resting and I am delighted to be holding those values. Perhaps that's partly why my AF has been so well controlled and now gives me so little trouble.
I’m glad you agree with me. They can say what they want but I had over 100 and ended up with heart failure because of it. That is enough for me and if I had continued the heart failure would have just gotten worse it doesn’t just stop it continues. People seem to think it takes a long time but I have only had a fib 2 1/2 years. I don’t think that’s an extreme amount of time and yet I was on my way to needing a transplant if nothings stopped the heart failure and high heart rate. I know my condition is not considered normal from what I’ve been told in the hospital, including from the tech for the pacemaker, which is why it is considered special and different. I respect everyone’s opinion as I said, all I can go by is my health. My previous doctor and Houston seemed to accept the high rate because he said I was an NSR in my flutter was gone. The problem was he didn’t look at the person in front of him who could barely stand up in his office. I don’t care what it says on a piece of paper, look at me how do you expect me to live my life like this?
I must’ve done some thing right in my life to get the doctor that I have now. None of us have a promise for tomorrow anyway but at least for today I am smiling and can walk and breathe without pain.
Dawn .... I must be thick, dumb or stupid ... or all 3 ....BUT if you have a electro/mechanical pump working at 100 and exactly the same pump, designed by the same designer/ manufacturer working at 60 - guess which is gonna fail first ? Damn obvious I would think. I'll stay with the 60 something every time as opposed to the 100 !
Bob I understand that is how it is done where you are. Doctors also differ and perhaps what I just saw from ethereal is one point neither of us mention which is the symptoms. I was a total mess PS I appreciate everything you post and tell us. I look at everything as wide open but as you point out and I usually say, we are all different.
Heart rates under 100 are generally not treated in the US as well. As explained to me by an ep re an elderly relative, current thought was that the side effects of rate lowering drugs outweigh any benefits at such heart rates and patients actually do better at the higher rate. We're not talking about 130-150 plus heart rates, but 90-110.
If you are in afib below 100 and experience no symptoms the only med you absolutely need is an anticoagulant. Reducing rate by 10bpm doesn't seem helpful in the long run. If yourrate esmuch over100 much I would advice tx. A Cardioversion vould e tries first and even now .Low risk.Flecinide could be tried if necessary. At this point I'dbk
You and I have communicated, and as you know everything tried on me had failed. The brief time I was an NSR after the cardioversion was absolute heaven. If they had managed to do that the second time and put me on the Tikosyn, you had mentioned that might have been a game changer for me. Unfortunately, the heart failure had already started. I never had cardioversion mentioned to me in Florida did not even really know what it was until this past September. Could a , would a should a as they say it is all in the past I wish I had found this site, much sooner and been asking questions. It is our body and not that we are doctors, but we have a right to at least ask questions. I’ve had my pacemaker fitted and the AV node ablated. It is what it is and I don’t have any regrets other than I wish I had a magic wand and could hop six months down the road to see how I feel then. For me, I think a big part is going to be rebuilding my body and stamina.
90 bmp is still within normal range and a very acceptable maintenance heart rate for someone in afib plus Diltiazem is not without risks. Not even sure you need diltiazem even if it didn't agree with you. Don't know what your bp is, but there are better drugs for blood pressure that you may tolerate well, however you may be able to achieve those ten points with lifestyle changes. Not a doctor, but personally I'd get off the diltiazem and live a normal life.
Amlodipine like Diltiazem is a calcium channel blocker, but at least for me, significantly less side effects plus it's better at reducing blood pressure. You may only need a baby dose (2.5mg/day) assuming you even need something. Personally, if I can stay 140/90 or below, I wouldn't take a thing. Besides amlodipine, there are also Ace Inhibitors that may also have some positive cardiac effects as a bonus.
Try Lisinopril as well, older drug, all the beta blockers and calcium channel blockers were awful for me. Lisinopril (zestril) does the job, but a split dose 10 morning 5 at night keeps better control than 15 in the morning only
the interesting part with me is I have had low blood pressure throughout afib until a couple of weeks ago. You would think blood pressure and heart rate should be similar but especially in warm weather my blood pressure drops and I can black out.
Is it possible that you aren't drinking enough fluids in warm weather? Dehydration can lower blood pressure. Hydration and sodium can raise it. When I go into afib, I reach for Gatorade. Quick hydration plus sodium. Might want to have some handy in warm weather.
oh no, you would not believe how much water and sport drink I’ve taken lol I prefer to drink over eating. One of my problems is I do not perspire as a rule, and do not feel the heat like you might. I love hot weather but as you know, we need to perspire to cool ourselves down. as my pacemaker tech recently said to me lol oh, you just can’t be like everyone else can you lol. That is why I need this relatively new pacemaker as opposed to others that they already had developed. I love to swim and I could stay in the pool from sun up to sundown without coming out. That also is not good especially when I was living in Florida and even here in Texas I discovered last year that we can hit 106° and stay there for a month or longer during the day. When I lived in central Florida, it was different because the humidity was disgusting but when it is dry, it’s a problem waiting to happen for me.
0h we definitely need AC but we are also very lucky that we have a beautiful umbrella of trees that keeps direct sunlight off the house. It is also a dryer type of temperature. I had lived in three parts of Florida each one very different from the other. In central Florida, just leaving the house to go to your car. Would leave a layer of perspiration on your face and arms. Very disgusting. When it didn’t rain you wish it would. I loved South Florida because we had the ocean breeze. Also hurricanes and tornadoes thankfully not too many. I moved to Texas a year and a half ago and had to buy my first winter jacket and a sweater lol you would never know I came from New England. I have become extremely wimpy about weather. I am hoping that we are able to get the pool put in this year. To be honest, I love the heat if I’m sitting in the pool. I don’t do the ocean because it has things swimming in it and I really dislike them. 😱👀
I couldn't tolerate the meds either. Zombie is an excellent description. Brain fog, fatigue and bradycardia were my symptoms. Exhausted all the time. I was off them by order of my EP but still on Xarelto. Had an ablation in Dec so nsr since. I couldn't have stayed on them. EP did give me choice of pacemaker and massive doses of Sotalol and I was like "no, I don't want to be a zombie".
Hi Mary. Glad you are sorted and no longer a zombie. I was told that because I am in perm afib either cardioversion or ablation were not going to work.I was concerned about having ablation(I'm a procedure coward) but i might have tried CV.
Hi… given the issues you face and intolerance to meds you might want to consider looking into the Mini Maze procedure. The surgeon who has developed very successful technique is Dr Randall Wolf here in Texas in the DeBakey Cardiovascular Center associated with Houston Methodist Hospital. You can review related information at wolfminimize.com, or go to the Facebook page “ Wolf mini-maze- live Afib free.” There you will see the experiences of folks who have undergone the procedure. Best wishes for resolution.
Unless they try cardioversion they can't say that ablation won't work. Always worth trying. If they can prove from cardioversion that your heart is capable of staying in nsr then ablation may be possible. Have you added magnesium taurate and coenzyme q10 to your supplements. They definitely help. Lots of info on both on google scholar with research studies there
Hi Mary.I have tried magnesium and q10 but never on a prolonged period.I may try this again. I cannot get to see a cardio specialist because gps don't think i would warrant it.
If you're in the UK go to see an EP privately. It will cost you 200 ish but he can then put you back on his nhs list. My gp told me an EP could do nothing for me. This was after I'd read the AFib cure so I knew what I was talking about. She begrudgingly gave me a referral letter. Granted the EP I'd picked for convenience doesn't do many ablations so I ended up changing eps after six months. But the difference was night and day. Type google scholar into Google search, then search for coenzyme q10 and AFib or/and heart failure. Plenty support there to take a big dose 200mg once a day to reduce inflammation. Seemingly can reduce AFib burden a lot. If I were you, and remember I fought with my EP over Bisoprodol and Sotalol, cos I was a zombie, because life has to be worth living and we should have enough energy and vitality to live life. Best wishes to finding a solution. But no gp is qualified to find a drug that's suitable for you that's an EPs job. You'll know fairly quickly which will and won't work. There are rhythm and rate control drugs that are not beta blockers or ccb I'm sure. Actually it's worth a conversation with a good pharmacist to see what other options there are and present them to your gp. I actually didn't realise how awful I felt until I didn't feel awful. And the worst thing is that I looked ok so I wasn't believed when I said I felt awful and didn't want to do things
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