Hello everyone. Further to my post last week and kind replies, I went to a cardiologist today and am still in a flux of emotion as thought I would get more advice and interaction and a positive management plan. He was very matter of fact & not very communicative. Did not smile and I felt uncomfortable when asked lots of questions. He said that A Fib was an ongoing problem that got worse over time. He basically glanced through all my blood tests, looked at my parents medical history of heart issues, read my 24 hr halter monitor results, my stress test ( which gave me an exercise induced atrial flutter) , my eco scan and results from a hospital visit when my heart rate was very high. He told me I had Afib and atrial flutters and asked how many episodes I was having, which I said was hard for me to tell as mostly notice them happening at night ( if sit down or when go to bed). My 24 hr monitor showed I had a few episodes - the longest for 5 hours at night when woke up with insomnia , then went back to sleep. He said I had paroxysmal atrial fib and flutter and infrequent supraventricular and ventricular ectopy. ( ?). He has changed my medication of 90 gm a day of diltiazem to a slow release ( 160 mg) of veracaps ( another calcium blocker) and 50 mg twice a day of Flecainide ( Tambocor) to regulate the rhythm. He will check in 4 weeks with another 24 hr monitor. I am worried because I asked about anticoagulants as everyone mentions it and I understand its importance. He said I didn't need it at this stage as Chadsvasc score was low. I'm surprised as I have an enlarged Atria. I was taking Aspirin but he said that there were more bleed risks in women and said I could stop. I don't feel comfortable about doing this so won't yet , and now want to see another cardiologist for another opinion. Have one booked in Brisbane ( as wanted two opinions) but not until late November and feel I need to see someone else sooner if I can. Also , he said that maybe later on I may need an ablation if the tablets don't work or condition worsens but they were not all that successful. Dear people.... feeling tearful tonight as thought I would get some positive answers and management plan that gave me hope. I feel worse than I did before I went to see him! I know people can't answer drug related issues per se, but do you think I should go ahead with the prescriptions, stay on the Aspirin and seek another opinion ? I'm all in a headspin about what to do.
Finally ... and thank you for taking the time to read this long email... I don't want to keep taking prescription sleeping pills as get insomnia as am nervous at night about Afib episodes. Can you use magnesium oil or Epson salts to relax in a bath? Is this OK on these medications? Are there any safe alternatives to sleeping pills? I try relaxation tapes and will be going to yoga and a hynotherapist soon. Feel I need something else to relax me at night.
Hello Barbara and sorry that you feel so low. Some doctors really do not understand this problem at all! First stop the aspirin. It has no useful effect on stroke prevention in AF yet can cause internal bleeding . If you go to the main Atrial Fibrillation Association website you will find a stroke risk calculator that can assess your Chads2vasc2 score so do this and find out if you really need anticoagulation. Do not be put off by local doctors. There is also an excellent website CAREAF which has information packs which may help you to get your message across. These are of course based in UK and on latest European guidelines but could be useful to you in Australia . If you can find one, an Electrophysiologist would be the best second opinion and again there is a "find your etc" on AFA website under patient information.
Dear Barbara, I really feel for you after reading your post. Health issues can be frightening, even more so when you don't feel your questions are being answered, something I can relate to. From my own personal experience, I sought a second opinion and was pleased I made this decision. I subsequently chose to transfer my care as I felt the second consultant listened to me, answered my questions, he even gave me his email address if I ever felt worried. (I have contacted him twice and he responded on both occasions). Although my CHAD score was low, his opinion was this was a guide line and given my history and changes within the heart he recommended an anticoagulant, Rivaroxaban.
I had suffered with Insomnia for over 40 years and big problem was my racing mind and anxiety. I signed up to an online CBT programme called Sleepio and this has made a tremendous difference to me. It takes time to learn the skills but it is so worth it. (I am not sure of the cost of the programme now). Another thing that helps me is practising mindfulness, this has helped me to stop worrying so much about things I can't change, like my health issues. I hope this is helpful. Wishing you all the best.
Thank you Bryonny. I will look up this online CBT programme tomorrow morning. I know worrying doesn't help at all. Easier said than done at times ! Am sure once I feel confident with both a GP and cardiologist and am on a management plan that makes sense and is effective, I will feel more relaxed. I hope so
Barbara - I sympathise so much with you as it is so natural to feel that a cardiologist will be supportive and 'engaged', I have been in a very similar situation to yours with a cardiologist who made it clear that he preferred to be elsewhere, with someone else - doing something else (LOL ) so I went to an EP as a private patient and got my plan in place - it was sooo easy!
It's so difficult to see past the negative attitude of the cardiologist and that is bound to colour your thinking - seeking another opinion quickly seems like a good plan to discuss anti-coagulation and a more definite management plan.
There are other more knowledgeable people on this site who will be able to advise you but let me send you a ((((big cyber hug)))) in the meantime.
Thank you Finvola. I have taken a day off work to try and make an appointment with another Dr and another Cardiologist who specialises in Electrophysiology. Thanks so much for the 'hug'- much needed tonight
Just written a long reply to you Barbara which I just lost because screen froze, aaaaggh!
Briefly, endorse getting second opinion, I put up with a cardiologist who didn't know enough about AF for far too long. Bob and the others have given really good advice. As soon as I found an EP in London (live in Devon, about 200miles away) I knew it would be ok. He suggested ablation ASAP which I had, put me on anticoagulants immediately, changed my meds. He listened and answered all my questions, gave me his email if I got worried and helped me to self-monitor using an Alivecor monitor so I could send him ECGs whenever I wanted reassurance or help. My local GP was so supportive because he also got very pissed off with the local cardiology dept. glad to say that has now changed and my EP's registrar recently got a consultant EP position and everything has now changed. I haven't had an AF episode since Mar this year but I did need 2 for it to work.
The consensus of thinking here in the UK is not to wait until the meds fail before seeking ablation, the sooner the better.
Very best wishes and hope you soon find a knowledgeable and empathic doc who will give you a clear treatment plan!
Thank you for your reply. It's hard to know who to see as my young Dr referred me to him and also had me on the hospital list but I cancelled that when got an appointment with him ( he is private and also specialises in arrhythmias). I live in Australia but was born in Bristol, U.K . I would travel anywhere to see someone who will listen, but obviously that's not practical . I work, have two teenage daughters , a partner and two little cavaliers. Plus a sister who lives here too. At the moment I am in flight mode ( as in fight and flight when feel extremely anxious) . I know I have to take control and not be anxious. I had awful sleep and now sitting here wishing I didn't have to take these medications or that I could be reassured that it's ok in the interim until I seek another opinion.
Oh Barbara I do feel for you! It's beyond my comprehension how these so called professionals can be so uncaring. We all need supportive reassurance and kindness with our AF problems. November isn't that far away you know and I think I would be inclined to go and get your second opinion. Meanwhile perhaps do as the I'm so important, po faced cardiologist has suggested with regard to medication. As Bob has said, it's really an Electrophysiologist that you need to see as they are the experts on the 'electrical' side of the heart. I wonder if you would be able to see one privately, that should be quick.
We're all here for you, so don't feel alone , we understand exactly the confusion you are going through right now.
Hello . Yes he was an electrophysiolosist and private. However , like any Specialist, not sure how good he is and certainly one wants to feel reassured , which he did not do.
Can't give any different advice than has already been given except to say how unbelievably better I felt as soon as I knew I was being properly cared for by someone who knew what they were doing and who had and shared a plan for my future care. It took me over 10 years to find this forum and kick myself into fighting g mode ! Take care x
Barbara, My consultant is an EP Cardiologist and I have not been prescribed an anticoagulant by him. He said I don't need them. This is supposed to be because my abnormal rhythms are in runs of ~ 30 seconds.
I recently asked another Electrophysiologist about my case at AFA patients day and he also said if episodes are short, as in 30 seconds, then he would not prescribe anticoagulants either.
As your recorded night time AF episode was a 5 hour one and you have an enlarged atria, If I were you I would push for a proper anticoagulant.
I know Aspirin is supposed to be of no use in stroke prevention but I choose to take a baby one and have done daily for 15 or so years without incident.
The other thing you ask is about Magnesium. I have taken that for over 2 years now and am sure it has calmed the fast but regular rates that used to wake me in the night. You can take it as a supplement in the evening (many people with AF take it, especially in the USA), add it to a bath in the form of salts(you need to use quite a lot, then have a good long soak in it) or spray it on your body as an oil(it is absorbed well through the skin). When I woke having palpitations at 3.50 am a couple of weeks ago, I came downstairs and drank a solution of powdered magnesium in warm water. All the extra beats faded away quickly after that. Of course that could have been about to happen anyway but I'm convinced it helps.
I hope you have success in finding another consultant.
Thank you. I asked this Dr about magnesium and various other natural remedies and he was dismissive , saying there is no serious medical evidence!
I disagree . I will ask the chemist if magnesium is OK to take with these medications. I know that with some Anticoagulants they say not to ingest magnesium, nor fish oil or Co enzyme Q10. It's all so confusing. I'm going to keep taking the aspirin until I can get advice on an anticoagulant for me from another cardiologist.
I gave my EP a list of supplements I took and asked his opinion and advice when on my meds, including anticoagulants:- Fish oils especially Omega3 - definately helpful, recent trials very informative and his view was that there needs to be much more research into supplements and their benefits; Magnesium, he said that as cardiologists they were dismissive of magnesium because it is very hard to get magnesium into the cells, there is a very complicated reason for that regarding the osmosis, blood serum and cells BUT that if you talked to an anaesthetist they would be very enthusiastic about magnesium supplements and yes, I use bath salts rather than injest, simple Epsom salts does the trick, because myasthenics are warned off magnesium; CO10 he thought was a must, but I use Ubiquinol, purified form.
There are good doctors who are reassuring and open minded and who will listen to you and agree a management plan WITH you. As soon as I found one that did that I felt much less anxious. I just hope you can find yours, keep searching!
By the way, did you see Soozie's recent post? There are a few Aussie's on this site, suggestion:- why not post asking who else in Aus and ask their advice as to EP?
I know someone on here was trying to establish an offshoot of the AFA in Aus from posts about 6 months ago and I do think I remember someone from Melbourne??
Worth a try, having friends nearby or at least nearer than UK or US is always comforting.
Hi Barbara....Sorry to hear about the bad way you have been treated. Just a suggestion but have a read of "Mind over Medicine" written by Lissa Rankin MD she is a doctor and explains how a supportive doctor can have a huge impact on your the way you feel and recover from illness........... the book is available on Amazon.
I'm in Australia, but in NSW. I sought a second opinion after a cardiologist was quite happy to brush off my concerns with not being able to exercise for more than 15 mins with 'you're lucky you can do that much!'. Well, as an active 35 year old, no, I don't consider myself lucky to get 15 mins before Afib hits. I have a congenital heart defect which causes the AF and went on to find a specialist congenital cardio which has made the world of difference. Don't be afraid to shop around for someone, we pay to see specialists in Aus, they should have the courtesy to listen to you properly. But, make sure you go in with your questions written down and write down their responses to make sure you've got all the details correct and you don't miss anything. If they see you're writing it down, they might be persuaded to answer you more comprehensively rather than give you the brush off.
I asked a CHD Facebook group for recommendations for cardio names - not sure if there's any AF Facebook groups who have enough Australians to be able to suggest any names for you, but sounds like a good plan to see one who specialises in the electrics. I felt that with my first one, that he saw too many fat old men who'd had heart attacks after one too many McDonalds burgers so he wasn't really equipped to deal with my more complex problems. Good luck with it all. And hope you get a good sleep tonight.
in reply to
Thanks for the good advice. I did write down a list of questions but didn't get the opportunity of going through all of them. I am seeing two more cardiologists one next week and one late November , so hopefully will get a more positive response from them.
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