Hi all, hope your well and managing the "lockdown". Just a quick update coming off the final 1.5mg dose, kept a few notes to share so it hopefully helps anyone who is also coming off or planning to reduce or stop bisoprolol. Today now the start of week 3, and so far the story goes.
Week 1
First day absolutely fine no untoward things going on just apprehensive as to what's coming creating a little anxiety . Day two much the same did notice cheecks became flushed and felt hot with noticeable redness, I'd imagine the effects of the dampening of adrenalin the drug offers now wearing off. As the week progressed this seemed to increase and then at the end towards 6-7 days strange stabbing pains in lower and upper arms, which was uncomfortable but not too much to bear.
Week 2
The aches became more pronounced with a feeling of being unsettled and a light feeling of heaviness of the chest. I did notice this abated once I walked or exercised on the bike, not sure of the science or reasoning maybe again related to adrenalin, and using it up. Headaches now became the norm, especially on waking, a couple of paracetamol did the trick. Energy levels much better and am sure those on the drug know only too well what I'm describing as the "bisoprolol drain" which in my experience had the effect of when pushing a little, ie walking quicker or longer, stairs or steps or cycling hard, the sudden loss of breath, as if you can't keep up with what you are doing and more so when you stop out of breath and be come more breathless becoming uncomfortable, this seemed to lessen as the week rolled on. The weeks ended yesterday with headaches disappearing, much better energy, better sleep, no weird dreams anymore and a definite improvement in stamina and quicker aerobic recovery while pushing on..
Been out for a quick bike ride today, hills and all other stuff a lot easier, no breathless events, feel more "alive" much clearer in mind and body, and no aches etc
Still getting the odd spike which feels like a rush of adrenalin, deep breaths and relaxation techniques hold it no problem, anyone looking to stop or being told to, its not all that bad, it's mental a lot of it, and can be overcome, il wait for a couple of weeks and put a bit more on how it's going, but all good so far and importantly no fast tachycardia or AF so the ablation part seems to be good for now.
Stay well all, and if you see my progress from a couple of years ago you can see there is always hope, I couldn't walk up a flight of stairs without gagging for breath or kicking AF off, and now every day's a delight.
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A little, but it did when I dropped from 5mg to 2.5mg and to 1. 25mg, it took about two to three weeks last time for it to settle down again, not to concerned will check it at another two weeks.
Hi Jean, pulse lifted to around 74-76bpm for the first weeks, since a couple of days ago its down to 66-67 at rest again and no more flushes or headaches, I think your exactly right itl take a little while for the normal homeostasis and adrenalin levels to return and with it blood pressure to previous levels , I do feel a lot more me if you know what I mean.
Yes, I know what you mean about feeling more you - that alive feeling!! I loved the last two summers when I was able to come off my meds. Now I've been back on them again since about last September, I've been in constant AF since last November, Had two cardioversions last year and been told I probably wont be offered any more. So that's three ablations and numerous cardioversions (have lost count). I have to say that other than feeling a little more tired being in constant AF is better than PAF
I'll never give up hoping that one day an easy cure will be found.
Good luck and don't go sailing off into the sunset and forgetting about us here. We'd certainly value your updates.
Ah Jean you've been through the mill and still take time to listen and encourage everyone, such a decent, kind person as many on here i liken to extended family . New tech and improved surgery is advancing constantly and hopefully something will offer you some respite, as constant AF is bloody wearing I know .
Thanks Jean il keep popping in as the chats and banter would be sorely missed.
Hi jean have you been offered sinus node ablation and would you do it if offered? I am getting ready for a cardioversion and tykosyn before that option which I have already been given. I would live with my afib but my heart rate stays in the 120s and was told I had to do something about that or it will damage my heart left to its own. I would rather do none of these things but being advised to. I had two cardioversions and 3 ablations in past years also. Never could tolerate medications not sure why doc thinks I can do tykosyn. Always seems like it’s left in our lap to figure this out. I already gave a pacemaker so if I went the pace and ablate I’d be halfway there.
I can cope with the way I am at the moment. In fact just lately I'm feeling really well and have managed some long walks. To be honest I'm finding that the more I do, the better I feel.
If my heart rate was stuck in the 120's, like yours is, then yes I would have the sinus node ablation without hesitation - I've never been offered that procedure by the way!
I really hope your next cardioversion works for you.
The amount of energy you get is 3x what you have under the Biso. Its been 14 months since my ablation and 9 months since I came off Biso. My life is completely normal now and I cycle 5 miles every other day. Enjoy the normality.
Hi, I can relate, currently on biso 5mg (Concor) . Breathlessness, and the so cold “bisoprolol drain” is real. Manageable, however. Hopefully It will be over soon. I’m on it for almost three months now. Status post op afib/aflutt ablation.
No bouts of afib and flutter. Yearning to lift weights again as it is my passion, but unfortunately, gyms are closed due to this pandemic, jogging, however left as an option.
I cam off bisop to early after having an ablation last April 19, werjt into flutter July 19, had to be cardio inverted and out back on 2.5mg, no more events and healing I'd say been much improved since December, not 12 months in coming off it with no issues so far.
Are you following a good diet for Afib? I’ve heard there is an appropriate diet, to reduce the occurrence and severity of afib bouts. I’m trying but not all the time. Most specially now a days, we have a full curfew here in Kuwait.
Just low Carb healthy eating mostly, but nothing radical or too severe. We half on "lockdown" here, which wasn't really much of a lockdown tbh, deaths at a Conservative 38k
Geeez!😟 38k?? Scary! Afflicted here is 10k , and less than a hundred deaths. Affected plummeted to 700 from 950ish yesterday. Whereas the other day it was soaring to 1k something new covid19 cases.
Interesting to here what side effects there are to Bisoprolol. I was on 2.5mg but the headaches, DREAMS💗, itchy palms and low HR! My Consultant said to halve it, which I had, I was Ok for a while. Started to get the palm itching again, some dreaming but.................. the low HR I can’t deal with, went down to 46, woke me up, coughing, breathless and NOT feeling right. If I sit for a length of time, the HR rate go’s low, 50-53 and I start feeling bad 😫 GP suggested cutting it in half 😳 had to buy a pill splitter! NOT happy last night and no medic to ask for advice, so just had to hope I could sleep 😥
I know how you feel, awful dreams etc, not had one on past week at all, just sound sleep, it's an awful drug I wouldn't take it again there are alternatives.
My HR once I had my ablation was steady but won the 2.5mg often dropped to 56-59, and I felt tired and dreadful.
Hope you can get sorted and some medical advice, maybe an alternative drug .
Wow sounds like quite a journey but brilliant news well done that's fantastic and very helpful. I'm on 5mg Bisoprolol after being diagnosed with AF in October (55yrs old and pretty active) Can I ask what has your AF journey been please? was it permanent AF? what were the key symptoms. Many thanks Dave
Hi Dave, mine started around 7 years ago with a long night out and plenty of wine resulting in dizzy, awful feelings I later discovered were bouts of AF . It was initially diagnosed as holiday heart and told not to worry by a disinterested gp, so I stopped going on long nights out which at first seemed to do the trick. I then developed paroxismal AF and fast tachy over the next few years sometimes with exercise other times a meal and a glass of wine , resulting in later A@E trips, some extremely scary with the unknown. Until an older very experienced locum GP by chance I Had and appointment with spotted i was in AF and got me a quick referral to Freeman Hospital Newcastle. This was around 4-5 years ago and after the consultation with Dr Murray he advised waiting as I was only experiencing two or three events a year and in his view technology was advancing quickly and if I could wait with relatively mild bouts then it would be an advantage to sit it out .
The events occurred 4-5 times a year until 2018 varying severity , I contracted severe Nora Virus June 18 or thereabouts, which after 4 days caused the worst afib and tachy symptoms I'd ever experienced, ended up being hospitalised for 3 days and ended finalised with permanent AF .
I sent Dr Murray an email with the circumstances and he kindly agreed to see me immediately.
I saw him July 18 and was put on the list for ablation. Got a date for Feb 19, which I attended and waited 4 hours to be tomd it was cancelled, little did I know it was because they had the new mapping system before coming avail in April which I was deemed a good candidate for. Had the op April last year, 7 hours under sedation and Dr Murray and his team were superb, patient, explained everything even during the op. After he said it was a total success, and I went back to exercise a week after op. Maybe too early and wish I listened to what I was told by many on here, giving sound advice. I developed flutter July 19 during a holiday after stopping bisoprolol weeks before, which was a nightmare and i had to be cardioverted with a constant 140bpm which I think started after training too hard.
Since then I've allowed myself more recovery time, and so far touch wood it's gone well, I was put back on bisoprolol but have reduced it since another appt with Dr Murray in January he advised stopping it, but I asked could I reduce it gradually, and he was fine with that. So I've gone from 5mg in Jan Feb to 2.5mg March April, now stopped altogether. Walk 3-4 miles every other day or cycle 5-8 mile every other, check up due in July unless its cancelled, so that's my story so far Dave, not all plain sailing, but much much the better for having the op .
Hi Ian, much appreciated reply and very helpful too, maybe you can offer some advice if you don't mind please? My journey very briefly:-
September/October 2019 felt dizzy etc most mornings eventually went to the Doctors and diagnosed with AF. Real shock, however, looking back I think I have had some degree of it for a number of years. I'm 55 active in sport, cricket mainly, and very much involved in cricket coaching through the whole year. In recent years some days I have been breathless during activity eg cricket matches but at the slightest exertion. Other days could do loads with no problem. I think what happened although my Doctor doesn't necessarily support the theory, is that I did a day of significant lifting, one day in September, I don't normally or haven't really done much manual work for a living so for me it was significant, and then within a couple of weeks or so this started.
Anyway I've had 2 ECG tapes 1 echo monitor, x ray etc and because second of the tapes, early March, indicated a high level of tachycardia episodes I was increased to 5mg Bisoprolol and awaiting consultation and a possible procedure has been mentioned (cardioversion I understand). Everything on hold for obvious reasons.
Current symptoms:- feel dizzy, like low blood pressure feeling most mornings, irregular heart beat pretty much all the time, with any light exercise (and it is only light, eg walking) or activity (lockdown gardening!) I have days were I can manage ok, then days when I literally can't do too much at all? Is this normal would you say?
Very normal mate, I had same symptoms when in afib, it varies from person to person, and usually it is a progressive and vicious cycle once it starts, I was similar, on that I was quite fit, swam, spent a bit of time in the gym and off road cycling . After eventually going into permanent AF and quality of life and interests dwindled because of the inability to endure most forms of exercise, I opted to go for ablation, best thing I've ever done. Best advice, and I got loads from some very helpful and extremely empathic members on here, is 1 / Get a good EP, they are the experts on the electrical side of the heart, 2/ Do your research and change your lifestyle, as in stop / reduce alcohol or other know triggers etc as it was a massive trigger for me. To be fair I didn't get any sense until I did see an EP , typically just fobbed off by doctors and ER consultants as they aren't that good at dealing with it, and come off bisoprolol as quick as you can or get an alternative as it's a horrendous drug of choice and has a serious downside as I've found out since, and many others say the same .
Anytime, also I would ask why your not on apixaban or some other anticoagulant if you aren't already, as AF increases risk of stroke of heart attack quite considerably.
Thanks Ian, I had a telephone GP appointment two weeks ago and I asked about anticoagulant or lack of it in my case and the GP stated because of my age, my blood tests and that my Chadvasc AF Stroke risk assessment was so minimal he said it wouldn't be considered until I was older eg 65 (currently 55). I have been concerned about this, do you think that advice is unusual? Thanks Dave
Well I was apixaban the moment I was in permanent AF, from my perspective I would want to be protected even with paroxysmal AF, as a stroke isn't always recovered from and can be worse, personally I wouldn't be happy having any afib at all and not anticoagulatad gvien the risk of blood pooling in the lower Chambers of the heart during this process.
Thanks Ian, sorry to hassle you on this, this is my main concern at the moment no question, I have done the AF related stroke risk calculator on line and I got a 0% annual risk of stroke and a Chads score of 0. I'm not sure how accurate these are? How for example do you think the doctor will have come to that conclusion? Cheers Dave
Mine was low to 0 but they offered me it and I took it, was 45-46 when diagnosed, think it depends on whoever is treating, my EP said he recommended it for anyone suffering episodes, just my personal opinion tbh but I wouldn't not want to have some insurance against stroke as AF is known to let blood pool in the lower Chambers, any chance of stroke to me is too much risk whatever the Chads Score represents.
Mine was low, but a GP who specialises in heart conditions at our surgery tried to persuade me to take Apixaban. I didn't want to. I was suffering with paroxysmal AF at the time with long gaps between. He was unhappy. I felt got at. Then a friend, fit, slim, always active 55 year old male, had a massive stroke out of nowhere one Sunday. He hovered on the brink for weeks. His left arm is dead and his walking is restricted now. I was back at the surgery in a week after hearing about his stroke and asking for the anticoagulant. I've had no side effects from it. Then, as chance would have it, I went into AF that wouldn't stop and was stuck there for 11 months so I was mighty glad of the drug then. Still on it after a successfullish cardioversion.
I hate Bisoprolol. I've been on 2.5 for over a year now. When started on it I was also on Digoxin and a BP tablet. The combo nearly did me in! Felt terrible. Better once the BP tablet was stopped. After my cardioversion in Feb this year I was taken off Digoxin but left on 2.5 Bisop. My heart rate is too fast. Before the 11 months of AF, my resting HR would be in the 70's. Now it's in the high 80's at best and often in the high 90's. Yet I'm exhausted all the time. I also have hypothyroidism that doesn't respond well to standard NHS replacement therapy. So they took an already knackered woman and gave her a beta blocker!
The worst thing is the pain in my feet and legs. Sometimes my foot hurts so much I could cry if I have to stand up. If I force myself to walk any distance I'll be worn out and my foot will hurt even more for days. I have to stand and walk about at work so I can't do anything at the weekends other than rest up for the next week. My toes and balls of feet are numb, yet tingling and when I'm in bed at night my feet and legs can burn and tingle like I've walk through a field of stinging nettles. My skin is dry as dry and I'm sure I have an allergic reaction to something because of my arms, which itch like crazy and are bumpy and horrible.
I'm not sure what is related to the Bisop and what to the thyroid and I don't know why my heart rate is high and, I think, has ectopic beats in it. But I'm pretty sure the Bisop is responsible for my feet and legs and the awful, constant tiredness. Will I finally manage to vacuum anywhere this weekend now it's Sunday afternoon? Perhaps. Most likely not. Will I mop the kitchen floor? Doubt it. This isn't living.
I have a clinic follow up in 2 weeks time. I don't want to go near a hospital and my husband say's I shouldn't go. But I need something to improve.
Tough choices at the moment I feel for you with the current situation making many of us anxious to be on any medical setting. I had aches and foot unexplained foot pain when on bisoprolol and awful aches while titrating off, and from other accounts bisoprolol isn't a pleasant experience for most.
Maybe ring ask ask what safeguards are in place or if its in alternative buildings as I've seen some appointments and services have been. The lack of go and general malaise I can identify with, bisoprolol was responsible for mine in sure as i have felt restored since stopping it.
Some of my lack of "go" will be down to inadequately treated thyroid too. But the two together are dreadful. And they won't want to treat my thyroid properly because of the AF! Even though I have the test records all listed out and can see my T3 was never the cause of my AF.
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