Please is there anyone who can help me, I don’t know where to turn! In April My GP reduced my dose of bisoprolol(3/4 of a 1.25 pill) to 1/2 as I wasn’t feeling too good, had severe reaction so told to reinstate dose. This I did but I did not stabilise, kept having problems including very weak legs, shaking and falling askeep 1/2 hour after taking dose. GP referred me back to cardiologist which took 2 months! Cardiologist said try splitting dose between am and pm for a month. This didn’t help so then he said to come off completely. Managed to taper off over 3 weeks ( though now think it was too quick) Had some withdrawal symptoms but manageable. This was 11 weeks ago, shaking and weak / wobbly legs still remain along with palpitations and breathlessness which I didn’t have before. Have loop recorder fitted and cardiologist not concerned about palpitations or about me at all it would seem. Saw GP yesterday who thinks my symptoms are all caused by adrenaline and has no idea how long it will last, has also sent e Mail to cardiologist. I’m about to lose my job as I’ve been off work for nearly 6 months . I’m desperate for answers, have trawled through so many posts on here and other forums and can’t find anyone who has been through anything similar. Thank you for reading and sorry for long post
At my wits end! : Please is there... - Atrial Fibrillati...
At my wits end!
So sorry to hear that you are having such a difficult time kizzie, unfortunately hardly anyone on these forums are medically trained and even if we were, it could be dangerous advising on medication without knowing and understanding your medical history. That doesn’t prevent us from talking in general terms and perhaps offering suggestions that you could then discuss with your Doctor and/or Specialist. Bisoprolol is generally always the first line of treatment offered by GP’s. It can be a very effective drug and it’s cheap and, as far as I know, the only beta blocker a GP can prescribe. It can take a while for the body to adapt to this drug but it does have a reputation for having unpleasant side affects. As well as helping to reduce and control heart rate, it can also reduce blood pressure so you need to be sure that your blood pressure is not to low. Even this is not easy because most home blood pressure monitors are not accurate for folk with AF. Your dose is fairly low, but it might be worth asking your cardiologist about alternatives. From what we hear, people speak well of Nebivolol and many (including me) find another alternative medication, Calcium Channel blockers, less troublesome too. You have probably read hear that EP’s (cardiologist who specialises in arrhythmias) are better placed to help AF patients. It might be worth discussing this option with your GP but very often they see their job as done once they have referred you to a Cardiologist so if you do ask, it might help if you refer to advice you have seen from AF Association.
Unfortunately, it can take a while to get the balance of medication right, so a high degree of patience is often needed and most of us are aware of just how difficult it can be to have that degree of patience! I hope this helps and I’m sure others here will come up with some helpful suggestions. You mention palpitations which are often not harmful but can be unpleasant. Some talk highly about magnesium supplements such a taurate so why not ask your doctor about this too……
Hi Flapjack, thank you so much for replying. I was on bisoprolol for over a year with only a few side effects, it was after this I started to have problems with feeling weak. I don’t even know if it was the biso causing it, in the pre ceding weeks I had had a flu jab, COVID jab and anti biotics but GP decided to try lowering dose of biso. I wish I never had, feel my life is ruined now. I was put on biso for LBBB and NSVT . Also sorry although I referred to him as a cardiologist, it actually an EP I’m under. Trouble is don’t think too many doctors know much about beta blocker withdrawal.
What antibiotic did you take?
Hi, thank you for taking the time to reply. I was given two lots to take at the same time. One was Trimethoprim and the other I can’t remember I’m afraid
NMQ but maybe you should have been transferred to diltiazem instead of the taper? Have you been tested for overactive thyroid?
HiBuffafly, thank you so much for replying. My cardiologist originally wanted me to take diltiazem alongside bisoprolol to help me wean off but pharmacist said it wasn’t a good idea as it would take my BP too low. By the time communication was made and a reply back from him, I was off the bisoprolol so he now says I’m fine on nothing unless I get any episodes of NSVT which was why I was on biso in the first place . I’m just so confused and worried
Have you had a full blood test Kizzie, including your thyroid function?
Jean
Hi Jeanjeanie, thank you so much for replying. Yes I have, GP did a whole host of blood tests and everything came back normal. It’s taken me months to convince him it’s not all anxiety, though I’ve have got a degree of anxiety ( who wouldnt?)
It's a long shot, but when my AF started making a reappearance after two ablations (no meds), I tried a full dose of liquid COQ10 daily, and it backed right off! I know it made the difference, because I have forgotten a couple of days and started getting a few irregular beats again ,(I can feel all of mine). Not exactly the same problem, I know, but maybe worth a try.
I have had A/F for over 20 years and have been through a whole range of drugs so I know there are others that, if tried, could suit you better. I would not be happy with the treatment, or lack of, received from the cardio and I would ask, through my GP, to be referred to another. Some people are quite affected by the drugs so the cardio should take time to ensure that you are taking one that deals with the A/F but doesnt cause too many side effects. The stress of losing your job. will be adding to your condition, there is nothing like stress to fuel A/F and the sooner this is resolved the better. I dont know what work you do but hope that there is availability so that you can soon gain employment again. Good luck
Thank you so much for your reply, I think I may have confused things by posted on this site as I don’t have AF though i know there are plenty of people on here who have ectopics, LBBB and NSVT as well so I hope that’s ok. My G P has referred me back to EP who I’m told is very good but I think you’re right and I need to ask for someone else
Sometimes we are put into a situation where we have to take control and I personally am at my best when I am taking control , it also makes me feel better in myself, the worst thing that can happen to me is not being in control of what is happening to me and I feel that I am on a roller coaster lol, this has happened to me several times in my life when I know something is wrong and no one seems to be listening so yes, seek a second opinion from someone who is sympathetic to your situation and is willing to work with you to find the solution that will suit you best.
Thank you so much, my difficulty is trying to find someone who doesn’t blame everything on anxiety!
Anxiety and stress do play a significant role in heart conditions but not necessarily the root cause, a new specialist may see things that others have missed, run different tests etc.etc. Good luck x
And if a female, we are automatically hysterical. Or hostile. Two things that I believe Drs use when they don't have the answers. I hate it when these Drs brush us off. Try to find another Dr if you can who is genuinely interested in your well being. Yes, no wonder we patients have anxiety when treated like yesterday's trash. Have you tried the deep breathing exercises. Many on here do them. It helps the anxiety. I do them in the morning and before I go to bed. I'm still able to stretch out on the floor to do my deep breathing/stretching exercises, but they could be done lying flat on the bed. There are times I fall asleep on the floor before I finish as I relax so much. 😅Hope you can try it.
Take care and be safe. Praying for you that you get the help you need.
Hi, thank you so much for your reply
I agree that stress and anxiety will be contributing to how you're feeling. Shaking for instance can come from shots of adrenaline in the body. I know because I've had it. I'm not trying to diagnose here - just saying it's likely more than one thing going on. Do you need to work? This is a serious question! Might it not be better to take 3 months to regroup so that you can get the advice you need? Is it possible to get signed off for sick leave? I'm just trying to think of ways to give you some space to get the help you need.
Hi Singwell, thanks so much for replying. I really do need to work, there’s just me and my adult son who has Asperger and depression and doesn’t work right now. I’ve been signed off for the last 6 months, occupational health from work are now involved and my pay stops in 3 weeks so we’ll be living off my savings and any benefit I can get x
That is a heavy load. You have so much to cope with that no wonder you feel at your wits end. Can you get some support from your GP with talk therapy referral or something like that? It can be really helpful if you feel in crisis
I have asked for this but been told there is a very long waiting list. All I’ve been offered is diazepam for anxiety which I refuse to take. My son sees a counsellor and I’m going to ask her to recommend someone for me. I can’t really afford it but I do feel in crisis , you’re right. Everyone , medics , friends and family don’t understand and just say everything will be fine but how can they know that! I love my job, I’m a teaching assistant in a primary school and I miss is terribly. Your kind reply really touched me, thank you x
You are totally welcome and I understand about the job - it sounds nourishing for you. And we need that don't we? It might be worth that investment for a couple of sessions if you can stretch to it. Tell yourself you're worth it. 🤞🤞🤞 For you.
Am so so sorry to hear of what you have been going through. I had a very bad reaction to Biso.... and infact did not tolerate beta blockers well. Cardiologist was away in Africa so his registrar prescribe a calcium channel blocker......worked brill for me. We are alldifferent so you really need someone who will think outside the box. Time for a second opinion indeed!
Secondly never accept a doctor telling you your blood test results are 'fine' (especially thyroid and b12) as the ranges are massive and you can be in range (low or high depending on the test) but be poorly. Always ask for a copy of the results -its your legal right - and post them up on here or Thyroid Uk or PA or all three!! Low iron or magnesium, low thyroid level or B12 can all cause symptoms like you decribe. Someone is missing something somewhere for sure! And it maybe whatever it is is exacerbating your heart symptoms or you simply havent been put on the correct drug to manage your heart symptoms.
My experience of having chronic conditions is you often have to take charge to be optimally well.....GPs are ignorant or dont have time to follow through properly. Thats the sad truth.
Hi, thank you so much for replying. The awful thing about all this is I didn’t have too many problems on biso, it was reducing the dose and coming off them that’s caused this( I believe). I will ask for my test results, I didn’t know you could do that. I wasn’t tested for magnesium as I was told they only test people who are on proton pump inhibitors but I could take a supplement if I wanted to
It's a dreadful to feel things are running out of control. I have LBBB, too, with ectopic beats, tachycardia and some AF. If you fancy, you could answer a few questions:
1. If you lost your current job, how serious would that be, and could you get another?
2. When were you given bisoprolol and why?
3. What were your symptoms before the bisoprolol was reduced and mean by “not stabilise”?
4. When you say you have “very weak legs”, could you run away from a nasty looking dog?
5. Do you know your morning and evening blood pressures?
6. Did the loop recorder show many ectopic beats (palpitations) and were these single or in runs?
7. “Adrenaline” is often a doctor’s way of implying some kind of “anxiety”. Have you been treated for this in the recent past with, say, CBT or SSRI medications? Have you ever had panic attacks?
Steve
I am sure you are well intentioned and I'm not trying to be picky but for the benefit of the original post, I query that adrenaline is another word for anxiety.Adrenaline is a hormone and anxiety is a condition or a word that describes a set of symptoms/ experiences including some that kizzie has mentioned but the same symptoms can be experienced from a number of different causes. Depending on the cause CBT and/ or medication for anxiety may or may not be relevant. I say this in order to be helpful, not difficult.
Sorry - and yes. I’ve edited my post to reflect what I meant. I know a very great deal about them both and can see that I likely wasn’t being clear enough.
Thanks for your post.
Steve
Hi, thank you so much for replying. I was put on biso 1.25 in jan 2020 for LBBB and short runs of NSVT. Had no significant problems til Feb this year when started to feel weakness and light headed. GP thought could be biso so to come off to see if it made a difference. After 2 days I experienced heart rate of 130 , shaking, chills, now know these were withdrawal symptoms. GP said to reinstate dose, so thought after a couple of days everything would go back to the way it had been but I still had the shaking then the weakness in legs started. I can walk slowly for about 10 mins but doubt I could run from anything! After a shower I have to sit for a good 10 mins before shaking and leg wobbles subside enough to get dressed. My BP is within normal range on my monitor. I don’t know whether ectopic were single or not, I haven’t been told and I didn’t think to ask. Keep being told it’s all anxiety and started CBT 2 weeks ago but practitioner things it’s unlikely to help as he doesn’t think I seem that anxious! My only conclusion is that it’s still withdrawal symptoms but again I’m told that’s not possible 11 weeks after stopping medication. Have found on another forum, people with longer term issues after bisoprolol but no one with my issues. I mentioned this to my GP and EP who both said don’t believe everything you read. Feel like I’m going mad
From what I've read it can take weeks or months for a drug to leave the body. I sometimes wonder if these Drs are asleep in class. 🙄
Hi, thank you for replying. Both my GP and mental health nurse say bisoprolol is out of your system within 2 days but it can take longer for your body to readjust.
I doubt you’ll find out easily online, myself, since what people attribute to the drugs they take can be too idiosyncratic to be useful. To say “we’re all different” is true, of course, but reactions to drugs are - thankfully - more consistent than people realise. Double-blinded clinical studies prove this conclusively in my view. I know others will disagree, but there we are.
I’d say that what you’re suffering cannot be owing to the bisoprolol, not at this late stage. But what it is, well it must be hard to discover or your doctors would know. The tachycardia you have is, I gather, a common one for them to have to deal with and I read that it’s generally benign but can accompany other heart conditions. Hopefully, again, they checked fir this. LBBB is also often also caused by another heart condition, so, again, I trust they looked hard and were satisfied! I have that myself with no other heart issues except arrhythmia.
I can say that when I had atrial flutter in 2019 with sustained tachycardia I felt beyond awful but, looking back, I have come to suspect that some maybe large proportion of that was owing to anxiety. I can’t untangle the physical from the mental, though not least because, once symptoms pass, I just can’t remember how I felt well enough to analyse what was what. At the time I certainly thought it was all physical, but now I’m far from sure.
CBT therapists aren’t always as experienced as you might think. They’re not medics and can’t have a doctor’s overview, insight, knowledge or experience of illnesses and patients. Anxiety is a very tough thing indeed to understand and diagnose, I know that much.
Was your post-bisoprolol heart rate of 130 sustained, btw? It should have stabilised even without restarting the drug, I’d have thought. I find with my 95-125 tachycardia that I feel shaky and a bit breathless but I can still work through this.
I wish you well and really sympathise. Is paying out for a private second opinion a possibility? An echo and consultation would be about £1000 though, with an MRI that much again.
Steve
You're not going mad kizzie. You are not being taken seriously and that's maddening for sure, but doesn't make you mad.You need some answers or at least he possibility of some by being properly listened to and having your symptoms investigated. It doesn't sound like something that should be attributed to anxiety without the proper assessment.
Wishing you well 🌸
Hi , thank you so much for your kind words of support K
What a dreadful time you have had . Has any Doctor thought to ask you what you are eating and drinking so that your diet and times of eating with adequate sleep and relaxation hobbies you have. Your body w ill respond to the diet which suits you. I was able to give up the bisoprolol which had given me drug induced Lichen Planuus. If only I had gone to a nutritionist earlier in my life!! My daughter had found June Butlin - you can google her in the Bristol area. She asks you all the questions and then monitors all you eat over a 6 week period and then asks questions like why do you keep having bought quiche and porkpies for lunch! In any case, after 3 months following the suggestions I received, I was able to give up my pills and used and learned about natural blood thinners like 1 t of celery powder each day with a little turmeric, cinnamon, garlic, apple cider vinegar magnesium as well as a group of 1 t of each, sunflower seeds, pumpkin seeds and linseed which apparently act like a hormone. I never liked alcohol much - second glass of wine seeming sour to me - so have given this up in favour of water, plenty of water except for a 1/2 inch of champagne for celebrations!! We are all different - so what I am doing may not be good for you - but just a thought you might get advice in that direction for yourself - good luck! and very best wishes, Wendy
Hi Wendy, thank you so much for replying. I try to eat as well as i can but cooking is hard when you can’t stand for too long and also money is tight. I don’t drink and I sleep pretty well. Im so glad your regime works so well for you. k
Sorry to hear your problems Kizzie but the pandemic has us all struggling for help. I'm afraid your gonna have to keep pushing for help. GPS are really not up to speed re arrythmias, although mine is a lovely guy he told me he is no expert on such things. They tend to know a little about a lot of things if you understand me. And in these times of long waits etc we have to read everything and push. The very best of luck.
Hi Ethel, I agree with you but I haven’t yet met a doctor that appreciates you telling him/her about what you’ve read on the internet, especially if they don’t agree or haven’t heard or read about it themselves
I taper Biso over a loooong time. So if I reduce 5 mg by 1,25 mg, I would take the new dose for at least three weeks before reducing further. Betablockers are famous for rebound effect. Meaning if you take them you develope even more receptors for adrenaline on the heart. You might still need them, as I did and do, but this happens. So when you come off or reduce you need a lot of patience. Those receptors will be built back but it takes time. If you do it suddenly you will be worse than before as far as pulse rate, blood pressure, nerves, etc is concerned. Take your time.
My advice is stop stressing over your job it will make everything worse. There is nothing you can do to change it. You are not well enough to work and assume you are signed off. Given the state of the NHS at the moment it could be sometime before you get answers. I would start a claim for employment support allowance now as it cannot be backdated. In the meantime you need a second opinion from a EP/Cardiologist. My advice is pay and go private rather than wait 6 months or more. At least private will be face to face. A GP is not qualified to diagnose heart conditions. Be pro active. Assume you take magnesium supplements it can help with AF. Good luck.
Take a deep breath Kizzie... I know having irregular heartbeats can be never racking, but you need to relax because all the stress hormones just negatively impact your condition and general health. I know because in late 1998, my health collapsed after years of dealing with the stress of a goverment corruption relating to witness tampering threats. I developed PVCs after pneumonia, MRSA and what doctors said was a "virus chewing on my heart". My my heart function dropped to 10%. During 2 months in the hospital, they 2 or more times told me I was expected to die. It took years for my heart function to recover to 35% and the PVCs to reduce. For 2-3 years, I lived believing I could die any day. I was weak, unable to stand for normal amounts time and shaky. At some point in time, I just decided that instead of being shaken up each time I had a major PVC event, I would just shake it off and not worry about it if it lasted just a short period of time. I know its hard, but you need to stop letting your emotions run away with you every time you have a Tachacardia/AFIB event. I know its alarming, but most tachacardia/AFIB events are NOT life ending.... A few years ago, I also started having AFIB events, but I am still here. When my Tachycardia and AFIB exceeded the ability of Metoperol to control it, I had a heart Ablation a few months ago. I still have infrequent Tach/AFIB events, but I don't dwell on them. The Stats are that most Tach/AFIB events arent fatal nor general health threatening. Stress hormones greatly adversely impact your health and quality of life... Stop dwelling on your Tach/AFIB events and get on with your life... I almost died in 1998 and spent 2-3 years obsessed with the thought of imminent death during PVC events... Almost 25 years now, I just let Tach/AFIB events pass and just resume what I was doing... (In the back of my mind, I evaluate each as normal or something requiring going to the ER or seeing the Doctor). Don't let Tach/AFIB events rule your life. And Get some exercise... Get an exercise bike and gradually increase it until you can spend 25 minutes on it (at any difficulty level you like) 3 or 4 days per week. If I can do it, you can do it. PS... Getting old sucks
Thank you so much for your reply, much appreciated K
I was on high dose bisoprolol along with other bp meds. I was getting worse and worse. I paid to see a cardiologist. Turned out it was the same man I had seen a year before on NHS. But he had 45 minutes instead of 5 to listen to all my issues. He took me off bisoprolol and on to varspamil half securing SR which is a calcium channel blocker. My AF is much improved and I am less tired. Re anxiety- it would be worth trying a low dose of diazepam for a week or so just to see if it helps. I get it in one week batches for muscle spasms in my back. It helps a lot for that. Anxiety does give you quite similar symptoms to heart issues- they thought I had it until a 24hour monitor spotted my Afib. So I guess the same can be true in reverse. So don’t dismiss the idea without trying some calming meds and techniques. The doctor will be more sympathetic if you do, and may change their mind if anti anxiety meds have no effect. I so sympathise with your situation- I remember well how it felt not to be listened to!
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