So many questions.....: Hi everyone. I... - Atrial Fibrillati...

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So many questions.....

Kateuk1 profile image
15 Replies

Hi everyone. I’m Kate and fairly new to this forum. I was diagnosed with Afib two years ago after 6 weeks feeling sick and nauseous and very weary. I had a cardioversion about 2 months later and was fine till recently. I was on blood thinners and Bisoprolol , but gradually weaned myself off the latter as it slowed me down.

6 weeks ago the AF came back with a HR of 125. I waited 24 hours then went to A&E where the consultant offered me another cardio version. Great... home within 2 hours, feeling fine!

It came back again2 weeks ago. When I get it, it doesn’t revert . As I am booked to go on a cruise next Wednesday, I was anxious to see someone quickly and opted for a private consultation. I saw the same consultant I have on NHS, , very old school and remote, but I guess he knows his job.

I have worn a 48 hour monitor and he did a echo yesterday. He has raised the Bisoprolol to 7.5 mg and says he feels another cardioversion won’t be much use as I have an enlarged upper chamber(?) so prone to A-fib, though the heart itself is not damaged. I asked about other treatments, but he basically said thousands of people live well with A-fib, as long as it is well managed with meds.

I am £800 poorer, but that is not my main issue. He says when I return from my cruise, he will raise the Bisoperol to 10mg. When I asked about other meds, he sighed, raised his brows and said Bisoprolol is the best.

Having read all your posts and seen the wealth of knowledge and experience on here, I would appreciate your thoughts. I am anxious about going off to Iceland for 2 weeks, feeling breathless, tired and under par. I worry that I will be a drag on my friend ( who says Don’t be silly, we’ll be fine)

Sorry to go on folks, but I’m really glad you are out there

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15 Replies
wilsond profile image
wilsond

First thought,you need to find a new specialist! A cardiologist is not as au fait with electrical problems as an Electrophysiologist or EP for short. You can ask your GP to refer you to one of your choice. Research ones in your area with a good success rate.

Just relying on topping up a drug for rate control to the maximum is not satisfactory,there are other treatments including rythym control,ablation etc. Basically you were brushed off it seems to me! Grr.

Go on the cruise,relax because you can on a cruise,your friend will not be left wihtout anything to do IF you feel a bit off one day.It will do you far more good than cancelling and fretting about that at home.

I hope you have a lovely time and get somewhere healthwise on your return.There are some very useful leaflets and supportive people om this forum xxx

Kateuk1 profile image
Kateuk1 in reply to wilsond

Thanks so much fir your helpful reply. I have found there is an EP in my area, so I will ask my GP to follow up when I get back

wilsond profile image
wilsond in reply to Kateuk1

Please do! They are the experts! As Bobd said on here..cardiologist s are the plumbers,EPs are the electrician s and GPs are general caretakers..! Best wishes!

Jalia profile image
Jalia

Sorry to hear all this. I do hope that you have kept your insurance company up to date with all that has been going on ??! This is so vital especially as you are going to be at sea. I expect you already know this. I've had to cancel a couple of cruises due to AF problems.

Agree with wilsond, your man doesn’t appear to be all that helpful. There are several effect alternatives to Bisoprolol and the fact that the CV worked for a short period, it does mean that an ablation might help. You really need to see an Electrophysiologist to get proper advice......

JaneFinn profile image
JaneFinn

Hi Kate, nice to ‘meet’ you :) But I’m sorry about the circumstances ...

Just wanted to send my sympathy and support - there’s nothing I can add to the very wise advice above from Wilsond, Jalia and Flapjack, except to second it all!

Very glad to see you’ve already got explored an EP referral for when you get home. Try not to worry about anything - relax and keep hydrated, and have a wonderful time away 🛳 xx

Kateuk1 profile image
Kateuk1 in reply to JaneFinn

Thanks so much. How lovely to meet such lovely people here. You are all so supportive and I feel lucky to have found the site.

JaneFinn profile image
JaneFinn in reply to Kateuk1

Me too! I honestly don’t know how i’d manage navigating AF, and the multitude of related questions and fears, without this wonderful bunch of people 😊 x

Spiritji profile image
Spiritji

Agree with Wilsond......I have what they call permanent AFib...... I take Diltiazen 120mg a day and Pradaxa for blood thinner 150 twice a day.

I feel good about taking a calcium channel blocker vs a beta blocker......

I am 68 and can swim 50 laps and walk around the lake. They told me I could not have an ablation because of the enlarged upper chamber or something but it does not seem to really affect my life. I also take Hawthorne at night to keep the heart calm and always start off sleeping on the right side to calm the heart then can later switch to the left side. Enjoy your cruise you will be fine!!!!!! The heart loves

the Ocean and the salt air...... the sea will

Protect you!!!!!

Kateuk1 profile image
Kateuk1 in reply to Spiritji

Thanks so much! It makes me feel more positive to hear your story. My main issue at the moment seems to be the breathlessness after a few minute walk or climbing the stairs. I don’t know if that is the AF or the Bisoprolol, but it does of course affect my quality of life.

I love the ocean too, but I will be looking at it rather than swimming I think!

Auriculaire profile image
Auriculaire in reply to Kateuk1

It could well be the Bisoprolol. Many people find it does not suit them . I could not tolerate a much lower dose than what you are on. I felt very tired and breathless even though in NSR. I have switched to Nebivolol at twice the dose of the Bisoprolol I was taking and feel much better. Nebivolol is supposed to be more cardiospecific. It is also more expensive! I hope you enjoy the cruise. It is a relaxing type of holiday .

Morzine profile image
Morzine

Hi kate, I think everyone’s advice about getting a better man to look after you is sound, we all feel very vulnerable with this and you need to know you’re getting the best care.

I understand totally that anxious under par feeling it’s cos you’re worrying about the cruise, I’m flying off to Australia in three weeks and last week I had a weird blip ( postablation), not afib but erratic with low pulse....I felt under par and tense for a few days, trying not to think of Australia but of course I was......i kept telling myself to not think about it but I was........I think we are so aware of this heart now it can upset us and cause fretting Whichthen makes us feel worn out.......the cruise is handy as your chum wouldn’t be in a hotel with nothing to do if you feel poorly. I’d say go on the cruise, I’m goung to Australia, we should though make sure we don’t get tired and not stress......I find those things started my afib off and it affects lots of afib folk.....

Try not to worry as it will grow bigger and bigger in your mind and make you weary.....

Go see doc and get a referral , that will make you feel less vulnerable,

Chin up........sue.

oliviab9 profile image
oliviab9

Just wanted to say all the advice you have been given here is great so I can’t add much other than I felt dreadful on bisoprolol and am now taking Nebivolol and feel ok on it . Enjoy your holiday and seek EP opinion when you get back .

Kate - you might want to try this:

--------------------------------------

After 9 years of trying different foods and logging EVERYTHING I ate, I found sugar (and to a lesser degree, salt – i.e. dehydration) was triggering my Afib. Doctors don't want to hear this - there is no money in telling patients to eat less sugar. Each person has a different sugar threshold - and it changes as you get older, so you need to count every gram of sugar you eat every day (including natural sugars in fruits, etc.). My tolerance level was 190 grams of sugar per day 8 years ago, 85 grams a year and a half ago, and 60 grams today, so AFIB episodes are more frequent and last longer. If you keep your intake of sugar below your threshold level your AFIB will not happen again (easier said than done of course). It's not the food - it's the sugar (or salt - see below) IN the food that's causing your problems. Try it and you will see - should only take you 1 or 2 months of trial-and-error to find your threshold level. And for the record - ALL sugars are treated the same (honey, refined, agave, natural sugars in fruits, etc.). I successfully triggered AFIB by eating a bunch of plums and peaches one day just to test it out. In addition, I have noticed that moderate exercise (7-mile bike ride or 5-mile hike in the park) often puts my Afib heart back in to normal rhythm a couple hours later. Don’t know why – perhaps you burn off the excess sugars in your blood/muscles or sweat out excess salt??

Also, in addition to sugar, if you are dehydrated - this will trigger AFIB as well. It seems (but I have no proof of this) that a little uptick of salt in your blood is being treated the same as an uptick of sugar - both cause AFIB episodes. (I’m not a doctor – it may be the sugar in your muscles/organs and not in your blood, don’t know). In any case you have to keep hydrated, and not eat too much salt. The root problem is that our bodies are not processing sugar/salt properly and no doctor knows why, but the AFIB seems to be a symptom of this and not the primary problem, but medicine is not advanced enough to know the core reason that causes AFIB at this time. You can have a healthy heart and still have Afib – something inside us is triggering it when we eat too much sugar or get (even a little) dehydrated. Find out the core reason for this and you will be a millionaire and make the cover of Time Magazine! Good luck! - Rick Hyer

PS – there is a new study out backing up the above observations. You can see it at

cardiab.biomedcentral.com/a...

Thomas45 profile image
Thomas45

I was on 2,5mg of Bisoprolol, heart rate down to about 60, feeling fine when the first very rare side effect reared its head. As i was being weaned off Bisoprolol I had a rare side effect. Very rare is deemed to be between 1 and 9 people in every 10,000 who take the drug, so don't worry, but follow the advice of others who've commented.

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