I would like advice from those on the forum with similar experiences of the AF journey. I am newly diagnosed and feeling pretty scared. In particular I'd like to know how long it took most people to get the right meds and dosages. I was started on Bisoprolol 2.5mg but because I was still symptomatic the dosage was raised to 5.0mg and then 7.5mg. It was horrible and I experienced so many side effects I thought the cure was far worse than the original problem!
I'm now on Diltiazem 60mg and although it is kinder than Bisoprolol, I still feel shaky, lightheaded and unwell a lot of the time. I also still get palpitations and shortness of breath.
I've gone from being a very active 72 year old who did Zumba, pilates and walked for miles, to being someone who feels constantly tired and can manage hardly any exercise at all. How long does it usually take to find the right drug regime to be able to cope with this condition?
I would be grateful for any advice.
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MKG50
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Since diagnosis in September I've gone from biosoprosol to diltaziam to dronedarone. Still not really getting my afib under control. It really is down to the person from what I've read on here. From type of afib symptoms to the side effects from Meds. Do you think stress and anxiety is maybe playing a part. It certainly did with me.
Thank you Tommy Boy and to all you lovely people who replied to my request for advice. I am overwhelmed by the kindness and concern. What a wonderful site. So glad I've found it !
Basically, In early November, I had awful palpitations and was so short of breath I thought I was having a heart attack. I rang 111 and they sent an ambulance for me straight away. Brilliant treatment in A&E then discharged with Bisoproplol and Edoxoban plus a referral for an Echocardiogram. Sadly the waiting list for the Echo was a long one and so I paid to have it done and also to see a Cardiologist who is also an EP. The Echo and subsequent ECG picked up no problems and so it was suspected that I have Paroxysmal AF. My cardiologist arranged for me to have a CardioStat heart monitor for 3 days which came off this morning.
Fortunately (or maybe unfortunately depending how you look at it), I had the most awful day yesterday. Palpitations and breathlessness from the minute I got up which lasted all day. The flutters were so bad that my whole body seemed to be shaking. The monitor should have picked that up and will inform the treatment I will now have. My cardiologist did explain ablation to me and, if I'm suitable, that is what I shall opt for. I don't do well on drugs of most types. Lots of sensitivities.
Thank you again for all your replies. I'm sure I'm going to learn more here about coping with this horrid condition than I will from most doctors.
Are you in rhythm now? I stayed breathless and headachey until I had my first cardioversion and got NSR back.
I felt like I had a death sentence handed to me and was very miserable but honestly you do get used to it. I have had a few cardioversions since first diagnosed in Sept 2018. I had my first Ablation in 2020 and since then only gone out of rhythm once.
I took my life back, I still have alcohol occasionally and have more than 1 or 2. After a while you forget you have it AF. Days go by when you don’t think about it.
However it takes a while to know what are the right drugs for you and what procedures you might go for. This group will help you. It did me.
They are always here when you need help.
You are on an anticoagulant?
I still take Apixaban, Bisoprolol and Ramipril btw. Even though I’m in rhythm.
Are you in AF constantly? If so, has your GP or whoever you saw mentioned a cardioversion or ablation? Many GPs know little about AF and assume that being 72 means you are likely to have AF permanently and so they don’t make any effort to get you out of it. As you don’t mention how you were diagnosed or who you saw after that I don’t know if you have a cardiologist but whoever is in charge of your care should try to get you back in NSR if possible and not just treat the symptoms. 60mg of diltiazem is the minimum dose, I take 180mg with no problems combined with a BP med on top and don’t feel like you do so you need to make a fuss. You and your GP should also not assume your symptoms are caused by AF, as it could be whatever causes the symptoms bringing on the AF instead. Best wishes, do come back with more background info if you want more helpful comments ❤️🩹
Sorry about what's going on. As you probably know, none of us are doctor's here, but there is a lot of information we can share. Just need some more information.
How often are you in afib and how long do the episodes last, or are you continuously in afib? When you're in afib, how high is your heart rate? In general, you do not want to remain in afib more than a week or it can become what is called persistent afib and after that it can become permanent.
As mentioned earlier, your family doctor may not be well versed in afib or its treatment, so you really should be under the care of an ep (electrophisologist) or at least a cardiologist well versed in afib.
To oversimplify, afib can be managed by either drugs and/or a surgical procedure called an ablation. Lifestyle can also play an important role with many. With proper care, sometimes the afib is gone forever, but sometimes it comes back and the strategy has to be changed. Many here have managed afib successfully and have been able to go back to our pre-afib lives.
Hopefully, you will find the right treatment and you situation will improve, but unfortunately it's often on the patient to find that right treatment by first educating themselves about afib. You've made a good start by posting here and keep on asking questions and learning more and afib. The more you learn, the less mysterious and frightening afib will be.
Hello MKG50. It’s a shock being diagnosed isn’t it? For me, that was last month. My bisoprolol has been fine but my anticoagulant did not agree with me at all. I am still in discussion with my GP surgery. They have a Pharmacist attached to the practice and he is usually more easily reached and is very knowledgeable. Does your surgery have that option? In the very short time I’ve been diagnosed I’ve spent a lot of time educating myself on AFib. I’ve already learned there are range of treatment options with an accompanying range of medical opinions. You certainly shouldn’t be suffering in silence and I wouldn’t hesitate to ask to try new pharmaceutical options.
Welcome aboard, this is a good crew on here - unfortunately no one size fits all re meds I’m afraid. Maybe keep a diary of how you feel on what doses, what you did or are doing that affects you pros or cons. I was able to strangely tolerate pretty hefty doses of bisoprolol but some people not at all. Keep contact with the medics just to check in - you’re not being bothersome - if they don’t hear from you they presume you feel fine on that dose. ‘Try‘ not to worry as this feeds AF and don’t try to run too soon (that’s my problem I’m afraid) - Zumba may well welcome you back sooner than you think 🤔 x
Welcome here. You've had some good advice already so I won't reiterate. It takes a while to get the right, individual treatment for this.Try not to let anxiety get the upper hand as this will make things worse, and listen to your body if you need to rest. Good luck and best wishes.
It took me 6 months to get the right drugs, dosage level and appropriate supplements. It took 2 or 3 years to get anxiety controlled and make progress on lifestyle changes.
To fight my anxiety I first of all got the episodes stopped (with 200mgs Flecainide), then developed confidence in my medics, followed by consultations with Alternative therapists and a lot of reading here and elsewhere.
I have dealt with AF successfully using not one but all tools, which address the many and varied reasons for causing AF; just one random example, dental hygiene can be a contributory cause so I spent a fortune at the dentist.
Hi SecondtryWhen you say dentistry can play a role, what do you mean exactly. I was worried about a broken root canal so had the tooth removed. Now I'm thinking of removing another root canal tooth, because my afib started a short while after this root canal treatment. The dentist said it was a perfect job and i recently had it x-rayed, again it looks ok with no infection. But i can't get it out of my head that Afib may be linked in some way. At this rate i won't t have any teeth left at all. Silly i know, what's your take
Hi Avatel, I understand bleeding gums and/or decay can put baddies into the blood stream and unsettle the heart. I also had some old mercury fillings replaced just in case but left one in as was not satisfied with the precautions taken by my dentist at the time...since changed!
Don't worry too much about root canals. Yes, they probably make some contribution (my guess is minor) to triggering AF depending on how good the job was, as you probably know it is almost impossible to stop some leak from the root cavity filling.
In dealing with AF risk, my plan has been to reduce the risk on multiple areas without getting obsessed with any one area and possibly throwing the baby out with the bathwater. So I got all my teeth fixed with inlays, had one out causing trouble and upgraded daily care significantly with 6 month hygienist/checks.
This along with multi other lifestyle changes stopped my AF episodes....and I still have 4 root canals in place!
Hi, and thanks for your reply. Luckily my gums are ok and so are most of my teeth. What you say makes sense regards dealing with Afib on multiple fronts. I too have in the main have got Afib under control with many lifestyle changes Including stress reduction.Still a nagging doubt am i missing something. Surely the brain controls the heart, so its as important to attack Afib mentally as physically
Yep, read up on the Vagus Nerve here. Lifestyle changes are continual (I've been at them for 8 yrs and still am) and a trap to avoid is when you feel better try not to go back to any old ways....resist temptation and you will be patting yourself on the back for the rest of your life, give in and you will be kicking yourself for the rest of your life!I have tripped up a couple of times.
I remember the shock factor well. Hang in there - its early days and you will gather information and support as you go along. Treatment regimes at the beginning follow certain protocols and unfortunately they don't suit everyone. I expect you're on the 60mg Diltiazem twice a day? I'm on 120 once a day. Diltiazem slows down our heart rate and also dilates the veins, helping with BP. It takes a while to upload any new medication. Drink plenty of water and be sensible about what you eat. Alcohol definitely interacts with Diltiazem in my experience, so be careful about amounts. Exercise is good for your mood and physical well being. You should still do it if you can. Zumba might not be right for you just now but there are other forms of fitness regime you can do I'm sure. Meantime, you can walk. Get out into the light, breathe, enjoy the outside air. You're still here. There are options. It will be OK.
If you are anything like I was, a question worth asking yourself is how much of what you feel might possibly be being caused by the anxiety and fear that this condition brings in its train all too often, i.e. when you are suffering AF or bisoprolol side effects, how fearful for the future are you?
Looking back on my own time with atrial flutter and AF, starting in the spring of 2019, I'm now fairly - but not in any way completely - convinced that anxiety might have played a big part in how I felt. I still can't tease out the physical from the psychological but have come to realise that fear was a major component.
At that time, I found that increasing bisoprolol from 5mg to 10mg did nothing except bring on side effects of chest discomfort and also to make it difficult to walk far without feeling too unwell to want to risk continuing. I eventually was prescribed a tiny dose of digoxin, which did help almost immediately and I was able to reduce the bisoprolol down to 1.25mg. The digoxin was stopped after my ablation and now, if I need anything, I take that same dose of bisoprolol as needed, which is not very often, and rarely for anything other than the discomfort of mild tachycardia and runs of ectopic beats.
I think you are quite right about the anxiety, Ppiman. Since this happened to me, and it clearly is nowhere under control yet, I do feel anxious and some days very low and depressed. This is such a big learning curve and it is early days for me yet. I'm not used to taking things easy and relaxing and I'm finding that bit hard and frustrating. Life style changes are clearly key to dealing with this. I'm working on it though. I think after I have seen my cardiologist/EP in the next week or so I will be clearer about the treatment pathway and may feel better about the whole thing. Here's hoping !
Time along with tests and a reassuring cardiologist are what will help most of all. That is guaranteed. You might not need the tablets if they are only for symptom relief most are. Ask your doctor about that, or for a tablet to take when you feel that need something.
May I ask if anyone here has experienced a problem with urination linked to AF ? I have no idea if the two are linked but when I am in AF I find that I need to urinate much more often and copious amounts. I wondered if I had a UTI but the path report came back negative. This has been going on for a while now, since shortly before I was diagnosed with AF. It isn't there all the time but when it is it is extremely uncomfortable and wearing. Just one more thing I could do without on this very steep learning curve !
Hi MKG50, I have the same issue when I'm in AF (I have Paroxysmal AF). I'm no doctor, but I read into this when first diagnosed 2 years ago and also discussed it with my cardiologist, and apparently it is quite common. It's likely caused by the release of something called 'atrial natriuretic peptide' from the fibrillating atria. I'm afraid I have no advice on how to stop/reduce the need to urinate (other than controlling the afib itself), but I recommend to drink some extra water to replace the lost fluid.
Good luck, and I hope you can find a treatment and/or lifestyle measures that work for you in taming the AF.
Sorry this is such a late reply as I was researching this morning and saw your post. It was explained to me that it is NORMAL to wee during an episode of PAF as it is the body’s way of getting rid of the salt in your system. Before my treatment was finalised I would make up to 12 trips to the bathroom during an episode. Having changed to Flecanide as my PIP from Bisporolol I now rarely need to wee if at all.
The nurse said that with a diagnosis of PAF it was vital to drink even more than the recommended 2 lites of water a day but I didn’t ask the medical reason for that.
I too have anxiety issues around this condition and find it very hard to control when it when I sense that the PAF is about to start.
You have had some great advice here and I wish now I had thought to check on HU sooner!!!
Stick with your treatment plan. I believe that medical practioners should pay more attention to the psychological aspects of how this illness affect patients.
Hi MKG50, lots of helpful advice from others on here . I will only add that for me , I was 52 when I had my first AF episode and it was persistent so didn’t come and go , I felt awful and at one stage was on 10 mgs of bisoprolol and couldn’t function . I only felt better once I’d had my first cardioversion which was 6 months later . I wished I’d gone private sooner as there is evidence showing that the sooner AF is converted to sinus rhythm the better ( if possible and appropriate ) NHS cardiologist wanted me to live with AF and be rate managed even though I couldn’t walk up stairs !! Best of luck , this forum has really helped me feel that I can ‘cope ‘ with this chronic condition .
If you still have palpitations you may still be in afib. You should get checked ASAP. I was never able to convert with meds. I had cardioversions (while well sedated) for each of my 17 or 18 episodes of afib. I would talk to your doctor about an ablation. What you're describing now does not sound like NSR and sounds like it needs treatment.
Started with AF 3 to 4 years ago. Initially episodes every 6 weeks but that increased to almost every other day in the last 6 months. Found bisoprolol too tiring and not that effective. Insisted on ablation in Sept 22. Been clear of any AF since but strictly been off any alcohol whatsoever since and only decaffeinated drinks now. Small price to pay.
Hi MKG50, I had permanent asymptomatic AF at diagnosis. Bisoprolol made me feel very poorly and I stopped it. I’m still in permanent AF with no symptoms 3 years later. Just on Apixaban.
Greetings from Canada. I was diagnosed with lone paroxysmal Afib about two years ago. Bisoprolol didn't work well for me as I felt lacking in energy and depressed. Some of that could have been the psychological impact of the diagnosis. Switched to Apixaban and that helped a lot. I was lucky to have caught my Afib early and to have found an effective med relatively quickly. I would suggest considering getting a Kardia monitor (the single lead is probably all you need). If you are feeling poorly it will provide a fairly accurate EKG tracing which you can print out and take to your doctor. Also some smart watches have sensors which can detect Afib. It sounds like you are aware of your symptoms though and might not need the feedback these devices provide. I enjoy exercise but alway work out using a chest-belt heart rate monitor with a bluetooth connection to an app on my iPhone. If my heart rate spikes up suddenly then I take a rest before it turns into an Afib episode. I find the feedback useful and it helps relieve my anxiety about exercising. As others have mentioned, a lot of finding the right drugs is trial and error and can take awhile. Good luck!
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