Just diagnosed with AF after 30 years of problems

Hi, this is my first time so just hope I am doing this right... I have just recently had a five day ecg which showed up AF. My cardiologist asked my GP to see me and discuss going onto beta blockers and warfarin. Chance would be a fine thing getting an appountment, had to wait for 2 weeks just to get a telephone consultation...finally spoke to him and arranged to try beta blockers as I have been on them before and not had good results as they made me feel worse than before taking them. He prescribed Nebivolol 5mg half a tablet once a day. I have now been on them just over a week, and am feeling really odd...tight gripping feeling in my chest and throat and shooting pains in my head on and off. Should I be getting in touch with him again I wonder. I have another telephone consultation with him this Thursday so perhaps I should wait. He doesn't seem to be bothered about putting me onto warfarin but as I have an appointment at the hopital on the 4th I live in hope that the cardiologist will again contact him about this as I am getting worried about it all now. Which obviously makes things worse.

Up until I started taking the Nebivolol I had been on Verapamil for about 20 years , is it possible I am feeling like this because of coming off them so quickly?

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18 Replies

  • Just wanted to say welcome and you have come to the right place to get support and advice. I can't help with your symptoms with change of medication but if your cardiologist has suggested you discuss anticoagulants with your GP, I would tell the GP that. Tell him Consultants no longer instigate anticoagulation ( because the medication comes from GP budget) but you got the impression he was expecting the GP to do it. If I was having a change of symptoms I would get back to GP as soon as you can.

    Have you done the stroke assessment on the main AFA site? This, if it turned out to show a need for anticoagulation would provide you with back up. You could also phone Consultant's secretary ( just ring hosp switchboard and ask to be put through) and ask if you could have a copy of the letter sent to GP. At least you feel you're doing something.

    Hope you feel more in control soon. regards Wendy

  • Thanks for the reply Wendy, I have got the copy of the letter which is why I contacted my GP as I just know he wouldnt have got in touch with me. I will go onto the AFA site as suggested and do the assessment as I am concerned about stroke risk.

    thanks for the advice

  • Sounds like you need a new GP to me!

  • Your GP doesn't sound very good to be honest, a two week wait and then only a telephone consultation? That's really so far from ideal. If there's any way to change to another GP without causing yourself a lot of grief, I would do it. You want someone who will take your AF seriously and give you the level of care you need. Oh, and hi and welcome to the forum :)

  • Hi Biggran and welcome to the AF Community.

    You're in exactly the right place and just about everyone here will be able to understand and even empathise with what you are going through.

    As others have said get your CHADS2VACS score quickly done at the AF website, if you are over 1 then you need to be on anti-coagulants fast, as the real risk from AF is stroke, and you need to understand this.

    Then some advice for your appointment, firstly take someone with you, you won't take it all in in the 15 or 20 mins you get with the Cardio and two memories are better than one.

    Also start researching now, the AFA website has loads of information, and you need to start writing down your questions, and then take this list with you to the cardio. You will forget to ask otherwise.

    Of course ask away on here if that helps, but for medical advice you must ask your cardio.

    Re the drugs, we all stuggle at first to find the right balance, you have gone from a calcium channel blocker to a beta blocker, and the body will take time to settle down, but the good news is that there are many different ones, and it is a bit of "suck it and see" to see which works best for you. The one thing you will find out quickly, is that there is no such thing as "typical" AF we are all different.

    As for worried?, yes we have all been there, the really good news is that AF is seldom if ever fatal, (it just feels like it will be at the time) But it needs treating, and handling like any condition, and with the proper jointly agreed care you will be fine.

    Now ask away that is what we are all here for and welcome again


  • Many of us have similar experiences to you. It isn't fair that when you are at your most vulnerable you need to be strong enough to tackle the National health! Luckily the support you will get on this site will compensate and make you stronger. It has for me. I wish you good luck. X

  • Welcome to our forum, you'll find lots of good advice and support here. Now if you have any little niggle or query you can be sure someone on here will have experienced it and can give advice, or support. I personally don't believe in putting up with any pills that have a bad effect on the way I feel healthwise. Does your doctor have emergency appointments? If so ask for one of them, as it's important that you are sorted out ASAP. Do you have a monitor to check your BP and pulse? The tablets you are taking may be taking your BP or pulse down too low and that will make you feel unwell. Hope you soon feel better.

  • If your cardiologist has asked your GP to talk to you about going on Warfarin, he means you should go on Warfarin, surely? Since when does a cardio refer patients to a GP? (I understand the budget bit but that's just paperwork). The cardio is the guy who knows what he's doing.

  • I agree with all of the above comments, please don't let your GP get away with being dismissive. Its your heart not his. Bet your bottom dollar he would get things moving if it was his heart in need. If your consultant says you need Warfarin then that is what you should have.

    Ask for an emergency GP appointment and if necessary show up at surgery reception and ask to see someone as you have a heart problem. It usually gets their attention as no one wants to be responsible for turning away a heart patient if things went pear shaped. Regards Dee.

  • Hi, your GP sounds downright lazy, to me, but ... and I'd want to change GP or even practice. I know, it's not that easy to change practice. I have been told I have right-sided Paroxysmal AF and left-sided Diastolic Heart Failure and only contact with an Senior EP Nurse told me and my daughter about the DHF, nobody else, but it shouldn't have been her alone to tell us.

  • Hi all and thanks for all you're replies and advice. It does make me feel better that there is someone out there that will listen (ok...read) to my worries.

    I don't think my GP is bad but the system doesn't help in that it seems to be pretty standard practice in my area that all gp's do telephone consultations first and if they feel they need to see you they get you in quite quickly. I just feel I would have prefered to sit face to face and discuss my treatment. I will try and be more forceful with him when he phones me tomorrow I think.

    I have had problems with my heart for over 30 years now, mainly palpitations that have had to be treated with adenosine to get me back into normal rhythm and have had many tests done over the years including an ablation in 1996 and feel that perhaps I am being labelled a hypochondiac but I have at last found a cardiologist that has listened and has assured me that she will find the problem and she seems to have hit the jackpot....just got to get the GP sorted eh!

    Thanks again everyone it's great to know you are all out there. Will keep you up to date xx

  • What did they tell you your ablation was for, if they've only just diagnosed AF now?

  • I was a long time ago now but I think it was an electical problem they thought I had, then they said I had SVT. In the past I have had 3 angiograms a stress mri and the other week I had a thallium scan (think that was what it was), that showed up that I have no problem with the blood supply to my heart which is a bonus. I also had a 5 day ecg a couple of months ago which is where the AF was picked up. You can see why now I think I might havebeen labeled a hypochondriac.......I hate all these things being done to me but I cant cope with the constant palpitations and feeling so unwell all the time.

    Thankfully this cardiologist is listening though....not like the last one that told me there was nothing wrong and suggested I take anti sickness tablets as it was all probably due to reflux!

  • I agree with one of the other replies, it is strange that your cardiologist haas left the medication up to your GP.

    I was diagnosed with asymptomatic AF in April this year, and my cardiologist discussed at length the various options available to me, and left it to me to decide upon the drug and dosage. Because of my chads score, I took the option of 150mg of Dabigatran twice a day, and he wrote a prescription then and there for 30 days supply,to be collected from the hospital pharmacy, so my GP only had to repeat that prescription when they ran out.

    Good luck, but do push your GP, I find mine is rather laid back about the condition, as it is in general not life threatening as others have said, it just seems like it at the time.

    However, I am a firm believer in monitoring these things, and responding accordingly, without becoming too paranoid.

  • Well have spoken to my GP again but only another telephone consultation. Dissatisfied, dissolusioned and dissapointed in him completely now. He didn't know what to change to as the Nebivolol was making me feel worse, he said as I have an appoinment with my cardiologist on Wednesday she can sort it out as "it's what they get paid for"...... can you believe that! I'd like to know what he gets paid for!

    Still no reaction to me going onto Warfarin as the cardiologist asked him to put me on, so will discuss things with her on Wednesday and see what she says. Don't think I will be seeing him again somehow....

    Has anyone else got this problem with their GP or is it just me?

  • "Has anyone else got this problem with their GP or is it just me?"

    Yes me. I moved from an area where the GP practice was up to date and took any heart issues very seriously, to one where they are very laid back and simply not up to scratch, if not actually dangerous to be honest. They are fine on things they are used to.

    Time will change this hopefully.

    I think you can choose your GP now can't you. Maybe a change would help is this hasn't already been suggested. Not always easy I know.

  • I have a great doctor now but the one I was with before sounds like yours. A stroke consultant diagnosed the A.F. then wrote to my doctor recommended warfarin but my doctor wouldn't prescribe it without a fight as he said I didn't need it as I didn't have the A.F. all the time! At that point I had already had 3 T.I.A.s what more did he want? I kept at him until he prescribed it. The experience has taught me that you have to take control. It's not always easy though when you feel I'll. Good luck. The time may have come for a change of surgery.

  • So sorry your GP didn't step up to the mark. It is so frustrating especially as they are called "gatekeepers of health services" so you rely on them for appropriate referrals. Can you ask receptionist if there is a GP in the practice that is interested in heart conditions? having said that I knew which one in our practice does a session at eye clinic but was not allowed to make appt with her about my eye as "she is not one of your doctor's team". Worth a try though. At least it's not too long till Wed. As someone else said if the chest symptoms are bothering you ,ask for an emergency appointment face to face. If you overdo it they may just suggest you call an ambulance though, in this "new and improved" healthcare system we survive in.

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