mystery if breathlessness and fatigue uncovered

[LKUK]

a few weeks ago I posted about the fairly random bouts of breathlessness and fatigue that I was experiencing and which I thought might be linked to eating. I’ve now had a chat with my arrhythmia nurse and she suggested it is probably paroxysmal AF. That made complete sense when she said it. The experience is like a mini bout of the permanent AF I had last year, but just not so high a heart rate. It was a relief to have a name to the symptoms.

the advice I got on here about food was very helpful and I have started now to adjust quite a bit about my diet. That hasn’t fixed the episodes but it has made them a bit smoother and I’ve shed a few pounds.

I’m now waiting on a 24 hour monitor to confirm if it is PAF.

does anyone have advice on PAF?

Thanks so much

[BobD Volunteer]

Dont let it rule or define your life.

[Dollcollector in reply to BobD]

I can't stop it ruling my life. I plan to go out or away and the afib comes on with a very fast heart rate and my heart jumping about all over the place. I feel faint and breathless and too weak to even get dressed, so how can lcarry on as normal?



[LKUK in reply to Dollcollector]

sounds awful for you. Can you seek more medical support

[Dollcollector in reply to LKUK]

l have been given a pacemaker which has stopped my blackouts but doesn't stop the fast rate. I could have high doses of drugs which are supposed to help but make me feel sick all the time and don't do anything for the breathlessness and fatigue. I did have a period of not being too bad, then l had my 4th covid vaccination which triggered 3 bad attacks of afib, 1 of which lasted a week. I am left to my own devices apart from repeat prescriptions from my g.p. Thanks for your concern. All the best.

[Hidden]

Hi LKUK,

May I ask why you think this event is related to eating .... or food ..... or digestion ?

John

[LKUK in reply to Hidden]

because the breathlessness often started after breakfast

[Hidden in reply to LKUK]

Just curious as in 13 years breathlessness isn't something I can relate to pAF. My issues have related directly to gut and food intolerance thus sending me off for consultations with a Nutritionist.

[LKUK in reply to Hidden]

for me there isn’t a history of food intolerance and breathlessness, this is only something that has come on in the last five or six months.

[LKUK in reply to Hidden]

and a big breakfast particularly sets it off

[jeanjeannie50]

Yes, I would have guessed PAF for you too. We that have suffered with it know that tiredness feeling well.

Foods can trigger these episodes of AF, for me a sure one was anything containing artificial sweeteners or additives. Unfortunately, sulphites, the preservative added to wine can set it off too. You are certainly right to look at your diet. Some people find that taking magnesium can help reduce their attacks too. I take magnesium glycinate which I buy from Yoursupplements online, this was recommended to me by another forum member here.

Don't become obsessed with your AF and totally focussed on it because any anxiety is like fuel to it. Sit and fret and an episode will go on for ever. People often say once they go to A&E with an attack it will often return to normal sinus rhythm. I've been that person and now realise that your heart can go back to normal rhythm because you feel safe and the and anxiety eases. It has taken me 17 years to get all this into my thick head. To be honest BobD would annoy me by saying ignore AF and carry on with living. I thought his AF couldn't be as bad as mine, but you know what - he was right! Take deep breaths and get on with doing what you want. Severe attacks can make you feel nauseous and faint, of course in that situation you dial 999, paramedics will come and check your pulse to see if you need to go to hospital and if so take you.

Hope this helps, feel free to ask any questions.

Jean

[LKUK in reply to jeanjeannie50]

thanks that sounds like good advice. I’m not keen on taking more flec at all.

[secondtry]

I am on 200mgs Flecainide and occasionally get quite random days when my energy levels drop for no apparent reason but it doesn't last more than 24hrs. I am pretty sure it is not PAF as I can monitor pulse easily incl listening as I have pulsatile tinnitus.

I would make more food changes & keep a diary to see what changes over time. Suggest breakfast like a king, lunch like a prince & supper like a pauper, exclude 90% gluten & processed & 80% sugar. Also make sure you only take Flecainide 3hrs after eating and then wait 1 hr before eating again.

[LKUK in reply to secondtry]

thanks. I didn’t know you needed to have eaten before taking the Flec - I’ve been taking it first thing and often don’t eat for 2 hours after that. I’ll try and adjust the way I take it.

[secondtry in reply to LKUK]

Apologies, I didn't phrase that well. You DO NOT need to eat before taking Flecainide. Just the opposite in fact, you need to wait at least 3 hours after eating. Your regime therefore sounds fine. Also sounds like you take the Flec once a day, if so you may like to check with your medics as I believe half the dose twice a day is more usual and may help with your issue as well as reduce episodes. All the best.

[LKUK in reply to secondtry]

thanks that makes life easier. I take it twice a day. 100mg each time.

[secondtry in reply to LKUK]

👍😁

[Maymuna]

Hi, I have PAF and I think over the years you learn to recognise your own unique triggers, although most are shared eg: dehydration, overdoing it, lack of sleep, caffeine, over exercising, stress, overheating, and many other things. Sometimes it happens without any trigger, more of a time pattern. I've chosen to treat it naturally for as long as I can so the aim is to get on normally most days, with daily walking or cycling fitted in, and see the Afib days as a day off from usual busy life rather than getting too frustrated with it. Not always easy as you have to change plans last minute, but if you can see it as a way of life then it becomes less of a burden.

[LKUK in reply to Maymuna]

thank you that is really helpful and I agree I will try and see it that way. In fact I find I can sit at my desk and work with it, it’s just moving around that is the challenge. Thanks for giving me a positive approach to it. 😄

[Maymuna in reply to LKUK]

Yes exactly, the Afib days I see as admin catch up, the reading I never otherwise do, life's natural way of slowing me down!

[Timetraveler67]

I’m fairly new here and when I read your post I thought that’s how I feel sometimes after eating, I thought I was going mad and it was just me so although I appreciate how you must be suffering with this I want to thank you for posting this. I try to put off eating breakfast because I know it probably will wipe me out for hours if not for the whole day, the fatigue and palpitations I get is awful for me. Because all this afib is new for me I can see I have so much to learn. Can I ask are you in the uk? Only I would also like to see a nurse like you did but not sure how it works. Sending warm hugs x

[LKUK in reply to Timetraveler67]

ah yes it’s like that for me too sometimes- wiped out for hours. Yes I’m in the UK. In Essex. The nurse is in the cardio unit: Arrhythmia nurse. I got connected to them when I had a cardio version last November. Have you talked to a cardiologist yet?

[Timetraveler67 in reply to LKUK]

I have had an echocardiogram and last week a cardio mri so far I’ve only spoke to the surgery pharmacist and my gp I have a telephone appointment end of November with the cardiologist, I’m disappointed it’s not a face to face appointment. I’ve begun writing a list of questions but honestly I feel defeated with everything as no one tells me anything and I find I have to fight to get answers I need. So food is definitely an issue and noone has ever believed me up until I read your post I thought it was all in my head. Thank you for replying to me x

[Polski in reply to Timetraveler67]

What are you eating for breakfast? If you are eating a typical bread/cereal/milk/marmalade coffee breakfast then you may have problems with your sugar levels.

Alternatively you may have a problem with gluten, dairy products or coffee! Try eliminating each of those from your diet in turn, for two weeks. If you feel better without the item, then remove it from your diet for four months (minimum) up to six months, and then reintroduce it one day in four. You should find it no longer affects you. Alternatively go to Yorktest for a food intolerance test, or find a nutritionist to help you. Hope this helps!

[Timetraveler67 in reply to Polski]

thank you for replying to me. I try to maintain a gf diet as best I can. Breakfast is gf porridge with 2 gf oat cakes some days a fried egg on gf oat cakes results always same. The only meal that doesn’t effect me is boiled fish with fresh veg which I’m beginning to hate it’s so bland and tasteless. I will look into getting an intolerance test thanks again for replying to me

[Polski in reply to Timetraveler67]

You can try putting 1 teaspoonful of organic apple cider vinegar in a glass of water and drinking it first thing in the morning, then leave breakfast until at least 30 mins later. Then gradually build up to 1 tablespoonful in the glass. You can also put it in a bottle and sip it during the day. It should help your digestion and 'cleanse the body'!

Also you can buy digestive enzymes from a health food shop, and/or Betaine hydrochloride (= stomach acid) which are both essential for good digestion. However don't do the latter two if you know you have medical issues with digestion. If you take a PPI then don't try the latter, but see a nutritionist about getting off the PPI. PPIs make you feel better at first, but don't do your digestion any good. Your stomach needs stomach acid in order to digest your food.

[LKUK in reply to Polski]

what does the apple cider vinegar provide?

[Polski in reply to LKUK]

It is supposed to leave the body in an alkaline state. Much of what we eat leaves our bodies 'too acid', and it is one of the few things that works very effectively to neutralise that acid, and so keep our ph at a normal healthy level. This promotes health.

It is also supposed to gently promote the natural production of acid in the stomach which is essential for proper digestion, and is something people can use who are trying to get free of PPIs. I've also seen it described as a means to calm the liver and help it work effectively.

I am not a nutritionist, but I have read a lot and that is a fairly garbled version of what I have picked up about it over the years. To put it differently, a lot of people have found it very helpful (including some people with rheumatoid arthritis type problems). In short it is a 'folk' medicine which is very cheap, available in many supermarkets, and worth a try. As with any supplement it needs to be used for at least three months to give it a chance to work it's magic! Unfortunately no-one is going to be paid to do scientific research on it, so it is difficult to be more precise than that! Shake the bottle as the 'mother' at the bottom is the source of many of the benefits.

[LKUK in reply to Polski]

thank you. I’ll give it a try.