Is there anyone else who doesn't know if their symptoms are a result of drugs or the condition?

I was diagnosed with AF as a result of an ecg when I had no symptoms I had noticed. I was started on warfarin and bisoprolol 2 years ago now. After a first Cardioversion, which put me in SR for 48 hours I reverted to AF. I had a second Cardioversion 3 weeks ago and reverted after 4 days. I have symptoms which have got increasingly worse over the last 2 years. Lack of energy, dizziness and the feeling that everything physical is much more of a struggle than it used to be. Sometimes I can feel the palpitations, especially when I reverted after Cardioversions. But are my symptoms just the AF or could they be from medication too. I am currently being referred for Ablation but have been told it will be months before I even get an appointment at the John Radcliffe in Oxford (i live in Swindon where they don't perform that procedure). Should I carry on feeling I am struggling uphill or should I take things easy?

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  • I don't now the answers except that based on my own experience which is that I've had to try various drugs to control the AF (and now ectopics), and when I still had problems like you are having, then we would have tried another drug, till we got the one that worked. So if I had your problem, I would be on the phone to my cardio/EP's secretary direct asking to try another drug. Last time we had to go through 3 or 4 to get the one that worked. Re the palpitations, at least one rhythm control drug I was put on gave me palpitations.

    Koll

  • Thanks Koll, for sharing your experience :)

  • Hi Suzanne,Bisoprolol did give me symptoms other than af.A lot of people on here will tell you it makes them feel tiered or breathless but it affects people in different ways.There are other beta-blockers you can ask for but GPs seem to go for bisoprolol.I was on 2.5 mgs for 15 months and have just this last 2 weeks been weaned off them so hoping i,m going to start feeling more like my self in the next week or so.As for the AFit made me tiered and very nauseus as well so it,s really hard to tell what is causing what.Hope everything gets sorted out soon for you.

  • Thanks for that, let me know how the weaning off goes, I hope it all goes well for you :)

  • Hi rags I have AF and am feeling awful mainly nauseous and no appetite and I wonder if it's my condition or the meds. I am on bisoprolol 10mg and warfarin. I have told my doctor but no joy. He says it's the AF which makes me feel unwell. I need too sort this somehow before I lose anymore weight. Help please.

  • Hi Suzanne and I agree that bisoprolol often makes people feel pretty bad,. That said AF begets AF and the longer you have it the more you will get it so it is quite normal for the feelings of physical exhaustion to get worse.

    Regarding your ablation, you don;t have to just rely on JR although they do have a good reputation.You can ask to be seen by whoever you choose and there is a list by area on the main website. The other slightly radical approach would be to arrange a private consultation with an EP and then hope to go on the NHS list. I did this once with my youngest son many years ago and the relief of having expert diagnosis and advice was worth the money.

    Bob

  • Do you have any recommendation or suggestion for an EP. (I live in Swindon). I looked at the main website but the selection by letter of hometown isn't complying :(

  • Hi Bob are you prepared to divulge the cost of going for a private consultation with an EP?

  • I am thinking £200 but is that optimistic!

  • I had an initial consultation and e.c.g. that cost 270 . Follow up appointments are 125 and any additional investigations will be extra. He is transferring me to n.h.s. for ablation. Hope this helps. In my case it's been the best money I've ever spent.x

  • Many thanks for sharing this. Are you near Swindon? Need to find a local EP.

  • No sorry. Cardiff.

  • The A.F.A. home page has a link to a list of E.Ps. but there are more than are on the list.

  • Thanks to you too dedeottie!

  • Thanks for info Suzanne

  • Sorry no but I would guess around £200 as Suzanne suggested. Ten years ago a specialist in skin cancers charged me £100 to look at my son's arm. Worth every penny as it was a week before Christmas and the first NHS appt was early March! Thankfully we wus wrong! lol

    Bob

  • Thanks Bob. I'll have to think seriously about this course of action. Probably I'll go back to GP and ask for referral back to Cardiologist in the first instance and then ask him for referral to EP. If that fails then going private would seem to be the only forward.

  • Hi there reedman, I paid £175 to see EP privately.

    Di

  • Many thanks for the info Di!

  • Hi Di, I read in another post that youm livin 'n Truro maid? Can'ee tell us if you went to Derriford? Very grateful for any further info, I live just outside Truro.

    George

  • Hi reedman, no I did not go to Derriford as there is an excellent EP here in Truro. But I understand there is a very good one in Derriford, I cannot remember his name but I will look it up for you and let you know.

    Di

  • Have just looked it up, his name is Guy Haywood. Hope that helps.

    Take care George

    Di

  • Hi Di,

    Many thanks for your info, I didn't know there was on in Truro; wasn't on the Treliske website when I last looked. I shall try locally first. Thanks again.

    Geo

  • Hi Bob, I also paid to have a private consultation with EP and it was worth every penny of it. I saw him at the end of February and because of Bradycardia and pauses, he fitted a pacemaker on the 30th April on the NHS. We did get an estimate to go privately, £10,000 for the pacemaker and £5,000 for the care, totally out of our pocket! So, thank goodness for the NHS! Even though one of the leads moved and I had to have it done again!

    Stay well everyone and have a calm heart. Angel blessings

    Di

  • Hi Bob, I've just been reading your reply to Suzanne from 2 months ago, and as my experience is similar, I would appreciate any suggestions/advice. I was first diagnosed with AF 4 years ago, at the age of 72. I had been feeling increasingly ill for months. It all came to a peak, when I couldn't eat, walk or breathe and my GP got x-Ray result (enlarged heart?) - I went straight to A&E - where I spent one day, and they pumped me full of diuretics - and diagnosed AF. I have a very nice cardiologist, but I don't think they are interested in AF. I was given a cardioversion (reluctantly?) in October 10, which was very successful for 14 months - until December 11. The Cardio I see is VERY discouraging about ablation, but from AFA info it seems important to choose a good EP. I then went privately to see EP I saw at AFA meeting. Initially he was very encouraging - but when I eventually saw him - it was 5 days after my 75th birthday

    and he said age 75 is the limit for ablation! He also said he would take me as NHS patient at the large London hospital where he is a consultant. Eventually when I got appointment at the London hospital, I was seen by a young Registrar, who had studied my case papers. He had all kinds of ideas including an eventual pacemaker. However, when he went to check with EP - the EP came out and told me he was returning my papers to my original/local hospital/cardio. I can only think he did not want to upset my cardio - cardio is quite a small world? On Thursday I have my next cardio appointment - since 14 months ago, when there is no guarantee who exactly I will see. I am on Bisoprol 2.5mg. & Warfarin. Like Suzanne, I get breathless and have no or very little energy. At 76 should I just be grateful? Apologies for rambling - but I would be very grateful for any suggestions for questions to ask the cardio, or any advice at all. Must say I think this forum is great. Best wishes to all.

    Pat.

  • Hello Pat and sadly I can't confirm or deny the age limit for ablation which i suspect is different for each centre. Pacemakers don't stop AF as they can't control the atria but pace and ablate often enables the symptoms to be reduced even if you can still feel the darned flapping about in there.The ventricle is then paced so you shouldn't get too many symptoms.

    I doubt that the worry is upsetting another cardio since EPs are a different world anyway. I suspect that the worry is age related with added risks as we all grow older. AT 69 I must be getting close to some firewall I'm sure but thankfully they operated on my prostate cancer and are doing their best to keep me alive and kicking.Just maybe not as hard as I used to.

    Bob

  • Hi Bob - what a quick reply! I don't know if there is an age limit for ablation, either. In some ways I am very lucky - to see me there is nothing wrong - but any exertion - and I'm done! I could sleep for England! The reason I mentioned the doctor who mentioned the possibility of eventual pacemaker is he was young (34!) and enthusiastic, and he explained he had studied my (very thick) casenotes overnight. He was so enthusiastic! I'm sure the cardio I'm under is good, but no interest in AF and also very low opinion of ablation! I suppose I've had a fair innings at 76 - but I just wish I could think they care! Can't agree with you tho about upsetting cardio - my cardio also has an EP in their family - and I am in Home Counties. It's a very small world round here! Sorry to hear you've got prostate as well as AF. Keep on fighting! And carry on with your helpful replies, which I'm sure we all appreciate.

    Best wishes, Pat

  • Many thanks Bob, I think you have a very good approach there, for the sake of peace of mind I think I will try to find an EP (had to look up what this meant); to give me an expert opinion. Worth finding some funds for an initial appointment I feel sure.

  • I have an artificial heart valve (2001) and was prescribed Sotalol. Then in Nov 2012 my cardiologist switched me to Bisoprolol. I gradually felt more and more tired, depressed, no energy to walk anywhere, breathlessness, headaches, cramps, severe acid reflux etc etc. My cardiologist insisted it wasn't the Bisoprolol at my annual check up (Nov 2013) but by March this year I was feeling so ill I went to see my GP. He took me off Bisoprolol and re-prescribed Sotalol - I can't believe how much better I'm feeling - I feel like me again. Everyone has noticed the difference, I am so happy and extremely grateful to my wonderful GP. I'm actually enthusiastic about going out for a walk, without grinding to a halt after a few steps, absolutely exhausted with aching limbs, gasping for breath. If you don't feel right, argue your case until a doctor listens. I'm lucky - I have a wonderful GP who believes in me and listens. Good luck. Linda

  • Thanks Linda. I will look up Sotalol as an alternative. I do have a good GP. But as with any GP he is not an expert in this field so I appreciate your direct experience of this. :)

  • Hi Suzanne

    I often wondered which symptoms were from the AF and which from the drugs and agree that Bisoprolol is the worst for tiredness and breathlessness. And when I came off Bisoprolol (was on 7.5mg) and only taking Flecanide as a pill in the pocket I also got very tired, but not as breathless when exercising ie everything I did didn't feel like I was wading through treacle, so I had bad days and a few good days, which got fewer over time.

    After ablation my energies are slowly returning and I am back on Bisoprolol 2.5mg but still get breathless walking upstairs but other things are not such an effort as now been on NSR for 8 weeks. It is so difficult to say which symptoms are being caused by AF or the drugs, but have definitely been there!

    Good luck for ablation, we so need more EPs and resources to treat this condition.

  • Hi Suzanne

    Drugs for AF need to do one of two things:

    1. Either reduce or stop AF or

    2. Reduce your max heart rate when in AF (from e.g. 150 to preferably less than 100). This helps prevent ultimate heart failure due to the heart over exerting itself.

    Does bisoprolol achieve either of these for you? It sounds as though it just makes things worse. If it's not working for you, I would ask to try another. There is a tendency for people to stay on drugs for AF when they aren't achieiving these objectives (the doctor is able to tick a box). If your max heart rate in AF is not that high - do you need to be on drugs anway? Do challenge whatever you're told.

    Mark

  • Thanks for responding, Mark. Well, the drugs are not stopping the AF; I don't know what my heart rate was before starting medication but it now averages 60 bpm, though it can drop pretty low at rest. After the last Cardioversion it dropped to around 40 bpm until the AF returned, and I still didn't feel better. I think you have raised a very good point there. It is about time I became proactive and started taking a bit more responsibility for my own treatment; Instead of sitting around, feeling sorry for myself and getting depressed about the exhaustion (me saying that not you!) Bob made a good suggestion about finding an EP to consult privately (although ethically this doesn't sit well with me); I will do this. I will ask about the possibility of changing/dropping medications at that time; as the replies from others have suggested too. I like the analogy of 'wading through treacle' that is exactly how it feels (CDreamer), it is of comfort to hear from someone who has been there too and good luck with your continuing recovery.

  • I do not do very well with some of the drugs as I have a lung condition too. I am now on 2 x 80 mg sotalol and 1 x 125 digoxin. I was on 3 x sotalol but My fingers and lips went blue so dropped one which seem to keep me ticking still. I still have a few wobbles but 150 bpm has dropped to around 60bpm at rest.

    I do think that sometimes the more you think of it the worse you feel. I have lived with it since 1992 and we all have ups and downs remember the ups :)

    I hope your ablation goes well.

    Be Well

  • I definitely had AF first for many years but almost symptom free. Then I had an x-ray due to a fall and an enlarged heart was discovered. I was diagnosed with Dilated Cardiomyopathy and put on meds for both. So, the AF along with a virus that I caught in Africa probably caused the heart failure. That was 4 years, numerous cardioversions and 3 ablations ago. What effects the meds have I could not tell you as my AF is no longer symptom free. I am having another ablation in Sep.

  • When I went off rhythm control drugs and anticoagulants to see if my AF would change, I found it took about six weeks before the drugs were completely out of my system. Taking drugs caused my AF to be much worse. With no drugs, I am fortunate and have not had AF since; maybe because I avoid possible triggers (which I now know about) like the plague. I took a baby aspirin for the past while since I did not go back on anticoagulants for now since I am not having AF. I have had tightness in the chest a few times a day and wondered what was causing that so a couple of days ago I stopped taking the baby (81mg) aspirin. The tightness in my chest has subsided and I think it is gradually disappearing; maybe because the drug residue in my system is decreasing. Go figure. I think you have to pay close attention to the impact drugs have on you. In my case, I had no knowledge of AF when it was diagnosed and assumed the doctors knew what drugs would help. Also, I do not take drugs of any kind for other ailments so I don't have other drugs in my system that could interfere with the AF drugs. After much research, I learned doctors have a very difficult time figuring out what drugs will work for each of us. If you can start with a clean slate, no drugs and avoid triggers, you may be able to determine a baseline for your symptoms Then, if one drug at a time is added, if necessary, you can determine the impact of the drug. Otherwise, I think you are an experiment for a doctor, who may or may not listen to your feedback, since most doctors have not had AF and really can't appreciate the predicament it causes. My GP said the drugs could not be causing the problems, it was all in my head, my body would adjust and the symptoms would go away or I would have to live with them to deal with the AF. Great solution for him but not so good for me. Daa!!

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