Inexperienced AF sufferer needing advice.

[Abseil]

Hi, I have a couple of questions which I am hoping fellow sufferers can give advise on: I developed AF in Jan from Flu. My HR was up in the 160s. I've had an angiogram and everything was within normal boundaries. So I am just being treated for AF with a betablocker and blood thinners. (I am also diabetic T2). If I miss my meds, which has only happened twice, my HR goes right up after 12+ hours but returns to normal after about 2 hrs after I take the betablocker. But even on meds, I still occasionally get HR above 100 but don't necessarily feel unwell with it nor do I get breathless. A&E told me I should only attend if I feel unwell/breathless. But should I go back to the GP? How often should I be reviewed by the GP? Also, I occasionally get pain in the left side of my chest - just odd places and for seconds only rather than minutes. Again, I don't feel unwell/breathless with it. Does anybody else get this? Thanks in advance

[BobD Volunteer]

AF is a chronic condition which should be managed by your GP in the first instance. If after a suitable time you are not satisfied with what he can do for you then you should ask to be referred to an arhhythmia specialist or consultant cardiologist who may refer you to an electrophysiologist- a cardiologist who specialises in arrhythmias.

A and E are quite right but if you have serious chest pain or feel dizzy or are fainting then go.

[Abseil in reply to BobD]

Thank you Bob D. Should I be on a regular review schedule with the GP though, eg once a year or once every 6 months?

[CDreamer]

You sound anxious & anxiety is the biggest factor in exacerbating AF so may I suggest you go to the AFA website & read up on AF etc.

heartrhythmalliance.org/afa...

And work on keeping calm - breathing techniques help, meditation etc.

High HR is not unusual but 100 is not abnormal when in AF - mine goes to 170-190 sometimes.

There is no set protocol for monitoring AF - really depends on your GP surgery. Mine do annual health checks - ie take bloods - FBC etc, urine, BP and general chat with Practice Nurse.

Otherwise nothing - unless you become more symptomatic in which case you go to your GP - AF is a chronic condition, not an emergency & A&E is overloaded as is & ive never received treatment there - only sat for a long time in uncomfortable waiting rooms picking up infections. Sorry if I sound cynical, but that’s been my experience but it really depends upon where you live.

You will learn a lot just by reading the posts here & do ask specific questions if you want information or support - we all know how it feels & it isn’t good. I’ve been living with AF in my life for 12+ years but many here for much longer.

Best wishes CD

[Abseil in reply to CDreamer]

Thank you CD.

[Coco51]

Hi Abseil. If you are on any drugs long term it's good practice for your doctor to take bloods annually to check liver and kidney function as well as blood sugar levels, lipids etc. I guess you get this anyway because of your diabetes. For me AF was affecting my quality of life enormously with breathlessness, fatigue, anxiety and mega high heart rate when walking up even small hills, so the GP referred me to an EP for further tests and ablation.

If your QOL is not affected and the beta blockers and anticoagulants work for you, then staying under the care of the GP makes sense.

However if the AF gets worse and is getting you down then a referral to an EP would be helpful. There may be a long waiting list -12 miserable weeks in my case. In the waiting period things went from bad to worse so I went to A&E with a very high heartrate. That seemed to speed things up a bit. A&E referred me to an Arrhythmia Clinic the following week. There I saw the lovely Arrhythmia Specialist Nurse who gave me a lot of useful advice and support weeks before the specialist appointment. I also saw a cardiologist privately for his opinion and for some guidance about the questions I needed to be asking. That was money well spent.

[Abseil in reply to Coco51]

Thank you Janet - that's helpful.

[Buffafly]

My experience of going to A&E is that the treatment depends on what the monitor and tests show - twice I have been admitted to hospital and last time I was treated with a drug to slow my HR and admitted then discharged because my heart suddenly went back to sinus. So being monitored is not a waste of time provided you felt very ill in the first place.

Pain from your heart (in my experience) feels like a too tight hug or a sense of an elephant putting a foot on your chest OR it can be ache in your jaw, neck or arm - this is important as I was asked if I had chest pain - answer no although I had cramping pain in neck and jaw! If you get it it doesn't necessarily mean a heart attack, it can be a spasm caused by the heart being over strained.

Best wishes 💜

[Hidden]

Hi there,

Can't really comment on your questions as I really don't have problems nowadays so long as I watch my food.

Just wanna say though, back in the day, when I was first diagnosed my initial symptoms were feeling I was going down with 'flu ... everything initially was what one might associate with flu. No cardiac stuff at all except my BP was somewhat erratic and falling. GP sent me to A & E immediately.

From this point it took another 9 hours for my HR to hit the 156 mark (and for me to get diagnosed with AF) - and 6 days in hospital.

Weird !

John

[Hidden]

Give this a try if you can - it might stop your afib episodes or reduce their severity:

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

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 (this is why all doctors agree that afib gets worse as you get older). 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 (afternoon) 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?? I also found that strenuous exercise does no good – perhaps you make yourself dehydrated??

I'm pretty sure that Afib is caused by a gland(s) - like the Pancreas or Thyroid - or an organ that, in our old age, is not working well anymore and excess sugar or dehydration is causing them to send mixed signals to the heart - for example telling the heart to beat fast and slow at the same time - which causes it to skip beats, etc. I can't prove that (and neither can my doctors), but I have a very strong suspicion that that is the root cause of our Afib problems. I am working on this with a Nutritionist and hope to get some definitive proof in a few months.

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 study backing up this data you can view at:

https//cardiab.biomedcentral.com/a...

How much sugar do you need to stop your afib? The answer is about 1/2 of what your daily sugar limit (threshold) is. My sugar threshold is about 80 grams a day right now. So if I go over that (and it's sooooo easy to do) my heart will start to afib. Then if I cut back to about 40-45 grams of sugar for one or two days, then the heart goes back to normal rhythm and stays there until I exceed my daily threshold of sugar again. (moderate exercise will shorten that time frame). I have gone 30 days under my sugar threshold with no afib once just to prove it is the sugar. And I have consumed my daily limit of sugar every day after going into afib and it stayed in afib for a week - just to prove that worked. So - as long as you know what your sugar threshold is you can control it, but that takes several weeks of experimenting to figure out. I use the following WEB site to know how much sugar is in different foods:

fatsecret.com/calories-nutr....

[Abseil in reply to Hidden]

Thank you for replying sugarist.

That’s very interesting. I am a bit of a numbers person- I’ll do some monitoring and see what the data indicates.

[Ianc2]

hi Abseil

Do you have a treatment plan for your Diabetes? Type 2 is more likely to damage your life even though it is usually completely reversible and can be fixed in a matter of weeks by implementing straightforward lifestyle changes.

Medication will help you control your problem. Lifestyle changes may well remove the problem completely?

[Abseil in reply to Ianc2]

Thank you for replying.

I do have a diabetes plan Ian. I intend to reverse it. I’ve done it before but life changes throws challenges all the while. I’m more anxious that I yoyo - that may be worse than being constantly diabetic!

[oscarfox49]

First not all beta blockers are the same. I remember after my first severe episode of AF in 1995 I was messed about by various doctors with first Sotalol (the best option) but then Propranolol and various other things which all made me worse and lying in bed at night with uncontrolled palpitations which meant they sent me to hospital several times, just to confirm it was paroxymsal AF. It took me weeks to get back to normal and the anxiety was sufficient to keep the AF situation unstable. I have been using Sotalol 80mg (40mg 2X a day) with good control until 2020.

Now almost two years after a stroke I am in permanent fibrillation but the sensations and rate is well controlled still by sotalol, and I am on blood thinners (Apixaban) of course, but have just been recommended to take Nebivolol, a cardiac specific BB which has fewer systemic side effects. Yet to try it, but I will be doing so.

Your heart rate IS going to speed up if you miss your medication as most BBs are short acting (Sotalol acts up to four days with some people) and the chest pains are almost certainly due to the anxiety caused by your condition. I would definitely go back to your doctor and ask for specialist advice about which BB would be the best for you... side effects even with Sotalol were dire at first, due to the generalised effect on the system as a whole.

My original cardiologist in 1995 told me exercise would make no difference, which was absolute balls, and most would now advise that life style and a good exercise regime will help your general cardiac health and lead to a diminution in symptoms. Have you also tried taking magnesium (I take bisilicate of magnesium) for which there is very good evidence that it reduces symptoms and in particular ectopics and palpitations, something I can verify myself even now I am in permanent AF. You lose nothing from trying it anyway. I just take one capsule a day.