New fast af. Unhappy

[Borderstories]

Hello, I’ve just discovered this site. I’m a 39 year old female diagnosed with af in December after sudden onset. I had 230bpm and after 36 hrs in hospital I self converted to NAR (as they were setting me up for a cardio version). In the first weeks following this I would flip into fast af often and it was terrible and terrifying. I have 4 young children and they have been very distressed. I am now taking 5mg of Bisoprolol split into two doses, and Apixaban. I am having episodes of af probably every week to 10 days. They last an 1-3 hrs and because of the Bisoprolol my heart isn’t as fast just very irregular.

Two issues: I recently was flying from Finland and went into af after take off. It was very distressing as I was breathless and dizzy. It lasted the whole flight and I was taken to hospital straight off the flight. On board I took an extra Bisoprolol as it was the only medication I had. I had mentioned flying to my gp and she had said I’d be fine. Luckily a great dr from Guys and St Thomas’s was on the flight too and reassured me the whole way.

I went to my gp after this and she referred me back to the cardiologist who after calling them told me they have a 3 month waiting list for next appointments (Worcester).

I am unhappy on the Bisoprolol as it isn’t really controlling the af I think. Also I have a busy life; children, work, post grad study at uni, dogs etc and I’m tired constantly, weary, breathless, can’t do my lovely dog walks as usual and am in bed exhausted by 8-9pm every night. I have also steadily gained weight! I feel sad and unhappy with the whole thing and don’t know what to do.

One good thing, my husband has a new job and has family health insurance. But I’ve never used such a thing before and have no idea if it covers af treatment or if I have to get my gp to refer me for private treatment?

Thanks

[BobD Volunteer]

Glad you found us as we have all been where you are now.

Yes it is scary and does tend to take over your life but there are things that can be done. Stress is one of the worst things for AF and many people find that if they take a long hard look at their lives there are things which can be done to reduce the AF burden. Diet obviously is one thing and many studies show that a reduction in reliance on meat and processed foods and a more plant based diet have beneficial results. Bisoprolol is well know to cause weight problems yet weight is another bad thing with AF. A BMI of less that 25 is desirable and of course no alcohol.

As far as what to do now I really think that you need to make a private appointment with an electrophysiologist, a cardiologist who specialises in heart rhythm disorders to discuss a treatment plan . Also go to AF Assocciation website and read till you drop as knowledge is power and will enable you to have meaningful discussions with those treating you rather than just be a customer. There is no cure of AF and any and all treatment is only for quality of life but symptoms can be terminated and drugs reduced over time and life goes on, just differently.

Ask any specific questions and we will try to help but do remember that we are not medically trained (althought there are one or two doctors who contribute occasionally ) so we can't comment of drug doses etc.

[Borderstories]

In response to the weight gain and side effects of the medication I’d like to half my Bisoprolol dose, but of course this is unlikely to help my af remain partly controlled. At initial onset they tried many drugs including iv flacinide (sp?) which did not work. I also wore a heart monitor for 2 weeks and after returning it they lost it and the info. After several weeks of not hearing from them an entirely new -to-me cardiologist said a one week tape had been found on his desk, that he had no knowledge of me or my history but since the tape showed no af and that I should stop taking Apixaban. I queried this with my gp and she was anxious and said to continue still with both medications until I see a cardiologist. It has been two months since this conversation with her and since my flight and I have had no appointment arrive.

I know Worcester are supposed to be one of the worst and failing hospitals in the U.K. right now which is worrying when I’m under their umbrella. A paramedic who took me to hospital there even said he’d rather not go there and tried to radio through to another hospital. Anyway, I’d appreciate any input on medication and also how to figure out af and private care/insurance etc

Thanks again

[Londonant]

Morning. I feel for you and remember how frightening the symptoms of AF can be and how the uncertainty can blight everything. My situation was similar to yours, I had an ablation two years ago and (fingers crossed) have been symptom free since. I recommend you see an EP ASAP ideally through your husband’s private healthcare. You will probably need a referral letter from your GP but can probably choose who you go and see. I was treated by Mark O’Neill from Guys and St Thomas’ and think he is superb. There are drugs such as flecainide that help your heart rhythm which may also help in the short term. If for any reason you can’t get this covered via private health insurance, if you can, it’s worth considering paying for an initial private consultation which will probably cost £300 but 45 minutes with an expert in AF who understands what you are going through can be life changing. Good luck.

[Buffafly]

My husband had family medical insurance with his job and as far as I know you should be covered because this is a new condition. Hopefully it would cover an ablation if recommended as well as a consultation.

Stress is one of the worst things for AF and although you would probably say you were enjoying your hectic lifestyle your body may not have been. I used to push myself and had constant colds and sinus problems. When I saw a consultant he said I should slow down, quote 'You women always try to do too much'. I was incensed by his unhelpful, unfair and misogynistic remark but when I cooled down and thought about it I realised I was setting unrealistic and unnecessary targets for myself.

I am wondering if you tried Diltiazem? It is an alternative to Bisoprolol which has its own side effects but not so exhausting. Perhaps part of the purpose of Bisoprolol is to force you to cut down on activity, luckily for me I can't take it.

Best wishes, please let us know how you get on.

[Gowers]

I'm in Worcester area but I'm under the care if qe hospital Birmingham due to long wait in Worcester.

If you want to go private through your insurance - There is a very good (private) Arrhythmia clinic at the Priory hospital Birmingham which is where I went & Droitwich private hospital have cardiologists who do consultations there from time to time so convenient to Worcester.

You can take a look at the Priory website where various cardiologists are listed or call them for info.

A friend of mine has just told me how Worcs cardio dept saved her life a few months ago & I know others have said the cardio dept is excellent.

Qe is a known centre of excellence & some of the private consultants will transfer you to their nhs clinics there.

Hope the info helps.

Af is not easy to cope with.

[Lepidopteran]

I'm an 82 year man. I had Ocasional AF since early childhood. My mother called it 'Palpitations'. I never even declared it when joining the RAF, Episodes were in minutes when younger, but became longer as I gor older. Recently I had a heart attack (While not in AF) they put two stents in me. Just after my heart went into permanent AF. I was put on 5MG Bisoprolol, twice a day. I find it very helpful! Mostly I'm not aware I have AF, unless I attempt something which exerts me. No weight problem from it. I know we are all different, but don't blame bisoprolol, too quickly. I find it very helpful.

I've been in AF now since Nov 2017. I was on Apixaban. I changed over to Warfarin because I have a itchy skin problem. Thought Apixaban may be the cause. It wasn't. I wish I was back on Apixaban again. Much simpler than warfarin tests all the time.

Hopefully this post may give you some encouragement. Best wishes Michael Birmingham U.K.

[Borderstories]

I’m so grateful for your responses here! Thank you so much. I feel less alone - although have terrible feelings of being trapped and panic-y when in af still. I will make some phone calls this week and try to get an appointment somewhere

[Hidden in reply to Borderstories]

Unfortunately the anxiety is part and parcel of the condition. Knowing this has helped me to say to myself that I know why it's happening and get on with my life

[jedimasterlincoln]

I think the vast majority here can relate with the shock, symptoms, the balance of home lifr and the unhappiness. You are not alone.

You've had some great replies already I can't really add to, but many of us have many posts of our AF stories which if you get chance with everything are well worth a read!