Dealing with an AFib episode without meds.

[Jomaur]

I was diagnosed with Paroxysmal AFib by an Energency Dept Consultant who ordered certain tests to be done in the future and sent me home with Anticoagulants. I wasn’t given any advice on how to manage an AFib episode or a follow up consultation just a letter to say my test results were OK.A year later I started seeing a private cardiologist because my blood pressure for which I’ve been taking medication for the last 20+ years had become difficult to control. This was probably due to the fact that I had then been taking Prednisolone for my Polymyalgia Rheumatica for 2 years. He has altered several of my medications and my BP is largely much better. I have asked him if there is any medication he can prescribe to shorten an episode, I have read about the “pill in the pocket” but he does not want to prescribe anything as I am already on a number of BP meds and he reckons that the meds that can shorten an episode have lots of side effects. He said I wouldn’t be suitable for an ablation because of my weight. Again due to the Prednisolone, which I am still taking after 4 years. I also have facet joint syndrome which limits my ability to exercise or even walk very far. I have however managed and am still trying to lose weight.

I find I get very anxious when I have an AFib episode and feel very dizzy and lightheaded. My husband and I haven’t flown since pre Covid but would very much like to travel abroad again but I cannot deal with the fear of having an episode at the airport or during the flight as I know I physically would not be able to deal with it especially as I have no way of shortening it. Have any of you managed to deal with AFib episodes without any extra medication?

[mjames1]

About how long are your afib episodes and what is your heart rate?

Jim

[Jomaur in reply to mjames1]

About 8-9 hours and my heart rate goes up to 130-145. I already take 15mg Bisoprol in the morning plus my other BP meds so am surprised that doesn’t keep my heart rate low even in AFib.

[mjames1 in reply to Jomaur]

I can't speak for everyone, but personally I would not be able to travel or do much of anything if my heart rate was 130-145 for 8-9 hours and given your symptoms, sounds like you can't either. I'm sure others will give some good non drug suggestions, but they don't work for everyone and may not give you the reliability and comfort you need to go traveling.

Given your daily meds and comorbidities, over my head to suggest what drug(s) might help you weather an afib episode -- but in general it's adding beta blockers or calcium channel blockers to lower rate and/or adding an anti-arrhythmic like Flecainide to treat rhythm.

Your current doctor apparently advises against both, so if you cannot convince them you need a better plan than just waiting the episode out, maybe get a second opinion from an electrophysiologist (ep) who may come up with such a plan, including what steps you may have to take weight-wise to qualify for an ablation.

Jim

[Bagrat in reply to mjames1]

Good advice Jim, as always, the uncertainty of having no "go to" meds while travelling would be a barrier for me

[Jomaur in reply to mjames1]

Thank you for your reply which I find really reassuring as I have been thinking I must be a real coward and making too much of my AFib symptoms. I am normally quite good at putting up with pain and medical treatments, just two weeks ago I went through an hour of radiofrequency ablation on the facet joint nerves in my back and was told by the consultant that I was an ideal patient and that many people can’t go through with it. I am a 76 year old woman and have I think a good level of tolerance but I find an AFib episode really scary and it makes me feel quite unwell. There is a problem with seeing an ep in that I am self funding and if I was offered an ablation privately dread to think of the cost.,I also have no idea of the the BMI limits for this. I think I will make another appt with the cardiologist and as I now have a Kardia device I can send him the readings for when I’m in AFib.

[mjames1 in reply to Jomaur]

Glad you found it helpful because you will sometimes read people telling how they just shrug off episodes, ignore them, go to the gym, even intentionally raise their heart rate as high as it will go to try and convert, etc, etc, And putting aside any harm they may be doing -- good for them, but we all react differently to an afib episode.

I must have been in afib for close to 6 days during my first episode and only at the end did I start feeling really off. But I was in my 30's and didn't even know what afib was! Now I'm closer to your age and once my heart rate goes very high I have to lie down until I can get it down. Even getting to the bathroom is a major chore. You are not a "coward" just oldie like me having an afib episode

The thing with the weight is that studies show that beyond a certain point, ablation becomes much less effective. That's why they are probably not putting you on the list. I don't know if they are appropriate given your other medical issues, but there are a whole new classe(s) of weight reduction drugs that have come to market over the last couple of years and that might be something to look into if losing weight would be your gateway to an ablation. Meanwhile, maybe try again with your cardiologist to see if he will let you try more rate drugs and/or anti-arrhythmic like Flecainide to bring you out of an episode faster.

Jim

[Jomaur in reply to mjames1]

Nice to know I’m not the only one who finds AFib episodes really hard to cope with. I have looked online at the latest BMI recommendations for ablation and I now would qualify but would have also to commit to losing about another one and a half stone. Given NHS waiting list should my cardiologist write to our GP and recommend it she would then have to refer me to a Cardiologist at the local NHS hospital and so on. By that time I could probably have lost half my body weight but be too old to have it done! I would be perfectly happy to try one of recommended anti arrhythmic drugs but of course I am continuing my slow weight loss in the hope that may also help.I shall also be seeing a physio in the next couple of weeks with a rehab programme folllowing my back procedure so hopefully may be able to exercise more.

[Bagrat in reply to Jomaur]

Don't think you're ever too old. I also have a feeling if you are unable to have an op for 6 months, due to weight issues, they then have to put you on waiting list. In my husband's case this was for hernia so may be different if heart problems

[Bagrat]

AF episodes are very scary and there are several strategies you can try. Sometimes things that trigger an episode also stop them like drinking iced water. You can also concentrate on yourbreathin, deep and slow. I breathe in for 7 and out for11 but some do box breathing, in for 4, hold for 4 out for 4 hold for 4. Put your wrists undercold running water ( I draw the line at a cold shower!!)Bending over often triggers episodes for some,but also may stop them.

Slow breathing is the first thing and keep it up for at least 5 minutes.

Of course if you have severe chest pain or feel ill head for A and E, If you've managed at home before that is something to hold on to.

I know its tough especially with polymyalgia as well.

[Jomaur in reply to Bagrat]

Thank you . I do try deep breathing and find it’s not easy to do when my heart is beating so fast! I find it easier to cope with during the night as I try hard to get back to sleep, although interrupted by frequent loo trips. It’s when an episode starts when I wake up in the morning or during the day that I find it difficult not to focus on my symptoms. Also I find I feel very lightheaded and dizzy even when my heart rate returns to normal and this can last for several hours. This would be extremely difficult to deal with while travelling. I even find myself worrying that I might have an attack before or during an important event as it is so disabling.

[Bagrat in reply to Jomaur]

I know that worry well. My gut feeling is you maybe as Jim suggested, seek a second opinion. We are all trying our best to live the lives we deserve and of course the knock on effect for family is a cause for anxiety also.We can make every attempt to jump of this merry go round. It at least then feels we are back in control.

[Jomaur in reply to Bagrat]

Thank you Bagrat I totally agree. However as I just explained to Jim I am self funding, I only went private as the GP I used to see just threw different meds at me with the result my BP was up and down all the time. I should imagine the cost of an ablation privately is high and who knows how long the wait is on the NHS. That is providing I pass the weight test which is not being helped by 4 years on steroids, which have also caused higher BP, possibly AFib and an irregular sleep pattern. Thing is they are the recommended treatment for PR and just by coincidence are cheaper than chips!

[Kbkk in reply to Jomaur]

Hi Jomaur, you are not a coward! I have PAF and find it very scary when I have an episode! Mine only start after midnight when I’m asleep or falling asleep but I find myself shaking I’m so desperate to take my Flecanide tablets! Deep breathing doesn’t help for me just makes me feel worse. I haven’t had any side effects from the Flecanide which I take as pill in the pocket, 200mg immediately I go into AF. I then go and watch tv to take my mind off it and the Flec puts me back into NSR within an hour. There’s absolutely no way I could be without the Flecanide, especially if I was travelling. I was actually terrified to take these tablets as read some bad things about them but I couldn’t be without them now and my cardiologist said they’re no big deal…just take them and stop the AF. To not be able to stop an episode would be a horrendous…..especially on a plane! Sorry about long rambling message but having a medication to stop an episode is an absolute must for me. Hope you find something that helps you, best wishes

[Jomaur in reply to Kbkk]

Thank you so much for your reply and it’s reassuring to know that I anm not alone in having such an awful experience with AF episodes. I am not due to see my cardiologist until August but I am thinking about making an earlier appt to see him and think I am going to have to be quite adamant about needing something to shorten these episodes.You feel in a very difficult position when you without any medical training are asking for something that they are against but I feel I will have to stand my ground on this as I now dread having another episode which I’m sure doesn’t help. Failing that I may have to get a second opinion but don’t really want to start all over again with someone else. Re the weight loss injection, I’ve read that as well but not sure. I shall just have to try harder !

[Kbkk in reply to Jomaur]

You are not alone! Personally I would really try to get a medication prescribed to stop the AF episode, if your other medications allow. We have a holiday home in Spain in the middle of nowhere and there’s absolutely no way I’d have felt safe to come here if I hadn’t got my flecanide . I also purchased a subscription to QALY ( £99 per year , probably the same sort of extra offered by Kardia ) so that if my heart is jumping etc ( I get ectopics) and I need some reassurance I can send them an ecg and get a report back within minutes. They also offer a robot to read the ecg and that’s very very cheap….and accurate. It’s been peace of mind to know I can get an ecg report almost immediately and flecanide to stop the attack…..otherwise I’d be completely freaked out!! All the best x

[Jomaur in reply to Kbkk]

How lovely to have a holiday home in Spain and the last thing you’d want is not to be able to go because of AF. I have bitten the bullet and managed to get an appt to see my cardio this Saturday and I’ll speak to him again about it.He is very qualified and pleasant enough but can’t say I have really taken to him. I wonder what he would do if he had debilitating episodes of AF? I feel a little bit of empathy would not go amiss in some consultants. I am 76 years old and do not take kindly to be told that in order to lose weight I shouldn’t have any biscuits in the house, when most of my weight gain is due to over 4 years on steroids and a serious back problem which has limited my activities as well as my PMR. I shall see what he says.

[Kbkk in reply to Jomaur]

I wish you the best of luck….. would be interested to hear how you get on. I’ve put on nearly 3 stone since being diagnosed with PAF three years ago….and I’m sure the beta blockers haven’t helped. I’m really struggling to lose the weight but I’m going to really try…..when I get back from Spain. Too my paella at the moment!!! Best of luck 😊

[Peacefulneedshelp in reply to Kbkk]

Thank you for sharing your experience with the "pill in pocket". Like Jomaur, my EP would not prescribe anything. I was told as long as the AF didn't last past 12 hours I would be okay. so far so good. I did learn with trial an error that taking a fish oil supplement put me in AF. I had stopped taking fish oil and never had an episode for a year and then took a newer fish oil supplement and bam! It is such a mystery. So I am a firm believer that we have many factors that bring on these episodes and one must pay attention to what we put in our bodies.

[Jomaur in reply to Peacefulneedshelp]

Yes I gave up fish oil for the same reason but that was before I had any AFib episodes after the first one.My cardio reassured me that an AFib episode woukd not kill me but missed the point which is I lose practically a day with one as afterwards I feel lightheaded and dizzy for quite a while. My blood pressure during that time is very low if my BP monitor will read it. I then take rehydration drinks and drink plenty of water but it takes a long time to go. I could not travel anywhere feeling like that and dread feeling like it away from home. It is very odd that some people are given these meds to use to shorten an episode while others of us have to suffer!

[Peacefulneedshelp in reply to Jomaur]

my very first episode nearly did me in, reoccurring ones have not been so drastic. I am convinced it is lifestyle in part. I did a lot a changes since.

[108cat in reply to Jomaur]

Just to say on deep breathing I've discovered it's something that works better now I've practiced it a lot when I don't have AF, then it's easier to do when you're suddenly in an episode .. you're absolutely right it's not easy to do when your heart feels like two donkeys trying to climb out of your chest (as someone once described AF) however I find if I just keep going with it even though at first it doesn't feel like I can get my breath deep or slow, I just keep going and then after 5 - 15 minutes I start to feel I can get the breath more naturally into my body soon after that feeling it starts working.

So not for now but in future when you're not in AF you could try practicing the slow deep breathing every day any time of day, build up to several times a day, right down into your belly so you can do it without having to think about it very much, then when you have an episode it'll be a tool that is easier to use when the mind is full of worry and focused on the symptoms etc.

Anyway I find this has worked for me, but it takes a bit of time to get used to the breathing and to learn to stick at it in the middle of an episode. I think the fact that it works is related to the vagus nerve that controls the heart rate and rhythm ...

take care ...

[Jomaur in reply to 108cat]

Thank you that is very good advice and I shall definitely try this. Glad it has worked for you.

[Bagrat]

I understand that. We are too and fortunately managed to see husband's NHS cardiologist privately, ( because NHS appts kept being cancelled) and he then slotted my husband into his NHS appt 6 months later. I did go on but have deleted as don't want to hijack your thread.

[Paulbounce]

Hi Jomaur.

Did I read this correctly? 15 mg of Bis is a very high dose first thing in the morning. Would it be worth talking to your doctor about taking 2 mg of diazepam before flying and another 2 mg before you board? It might help and allow you to travel again.

Paul

[Jomaur in reply to Paulbounce]

Yes you did read that correctly and I must have been taking that for over 20 years. I don’t know if Diazepam has any effect on AFib. It’s not flying I’m afraid of but having an AFib episode at any point of the journey would be quite awful as the AFib episode I had today started before 6a.m. and I didn’t return to normal Sinus Rhythm until 3p.m., I checked this on my Kardia. During this time I feel very anxious, giddy and lightheaded and the only thing I can really do is sit it out.Thats the reason I asked my cardiologist about a medication to shorten the episode as I can lose a whole day feeling rough.

[Kbkk in reply to Jomaur]

Hi Jomaur, sorry, I forgot to say previously could you speak to someone about taking a weight loss injection such as Wegovy? We keep hearing that it’s good for some heart conditions. Having a healthy weight ( which I’m struggling with) is one of the most important things for those of us with AF and maybe if your other medication doesn’t interact you might be a candidate . Best wishes, Katie x

[Karendeena in reply to Jomaur]

I would ask about the diazapam. I was given this for ad hoc use when distressed (I have real problems with my mum), but I read about the drug and it says it can increase the heart rate. I try to avoid taking it now

[Paulbounce in reply to Jomaur]

Hi Jomaur

15 mg of Bis is a very high dose. Personally I couldn't function at that level - however we are all different.

Does Diazepam have any effect on afib? It's a moot point but IMO it does. It can help with feeling anxious which in turn can trigger afib.

Have a word with your doctor and see what he/she recommends.

Paul

[Blueflags]

Hi Jomaur, I completely understand your view of not wanting to risk flying because of being anxious of having an episode of AF and not being able to control it. The brain is a very powerful tool and can take over our rational thoughts sometimes, which is my nemesis!! as I tend to panic a bit when I have an episode (which is clearly not in my best interests to stopping it)

I also have Polymyalgia and have been on prednisone for over two years on a reducing dose. I had an ablation in 2020 and was very much okay until 2022 when the polymyalgia stayed and I’m sure the prednisone exacerbated my arrhythmia ever since.

I am considering taking advise on my anxiety to see if it helps me control the AF episodes so I can have a better quality of life.

I hope you can get some result from your Dr which will enable you to go on your holiday abroad, take care 😊😊

[Karendeena in reply to Blueflags]

My EP wanted me off prednisolone (I also started with polymyalgia at the same time as afib and often wonder if it's linked). He said that prednisolone can interfere with the heart and should only be taken at the lowest dose for the shortest person of time if necessary. I finally got off it in January this year after 3 years.)

[Blueflags in reply to Karendeena]

Interesting, as no-one (GP, cardiologist or EP) has ever said to me that it could have an affect on heart arrhythmias. I guess we all have to be very pro-active ourselves to gain as much information as we can to discuss it with medical professionals, thanks for your reply 😊

[Karendeena in reply to Blueflags]

You're welcome. My EP is a very well respected Professor and I would trust his word 💯

[Jomaur in reply to Karendeena]

I’ve read about Prednisolone affecting the heart in fact it seems to affect everything. It definitely increases blood pressure and also weight. I was diagnosed with PMR during the pandemic so only had telephone consultations with my GP and no blood tests done. Following a serious fall which resulted in 3 fractures of my humerus I developed severe back pain which at first was attributed wrongly to my PMR and my dosage was raised. I am now seeing another GP at the practice who is supporting me in coming off the Pred by having regular blood tests as the pain in my back does confuse knowing which pain is PMR and which isn’t.I also after nearly 2 years of back pain managed to get seen by the Pain Management Clinic at our local hospital who immediately diagnosed Facet Joint Syndrome and have recently had treatment for that which is definitely helping.I am now down to 4mg Pred daily and hope to reduce further in a couple of weeks.I have now been on it for 4 years 3 months - way too long!

[Exhiker in reply to Karendeena]

That's interesting because I too had polymyalgia and was on prednisolone for over 3 years. I've only just come off and now been diagnosed with Paroxysmal afib. I did wonder if it was connected.

[Jomaur in reply to Exhiker]

Well it does make you wonder but it does seem that drs don’t want to make the connection but because of my back problem I have had to tell various drs that I am on Prednisolone and they have all said what a horrible medication it is. My late mother was diagnosed with PMR when she was in her 80s and the treatment we have now is no different from what she had even though Prednisolone has a list of side effects as long as your arm. I cannot wait to come off it and the doctor at our practice I am now seeing is the only one who has really shown any concern about the way it has affected my BP and my weight. There is a Biological drug which is now licensed to treat PMR but apparently it is quite expensive but I can’t imagine it will be offered generally because of the cost. Cynically I wonder if treatment hasn’t improved because PMR usually affects more women than men and usually aged 50+ so we are seen as not so important in terms of our contribution to the workforce as a lot of us are retired.

[Exhiker in reply to Jomaur]

Yes, that last part of your reply have always been my thoughts exactly.

[CDreamer in reply to Karendeena]

Exactly! I take steroid sparing drugs because of the affect on AF. My EP and neurologist used to confer before prescribing. I don’t have Polymyalgia but an autoimmune condition which requires immune suppressant therapy. We walk a tight rope balancing these meds. I have never been able to tolerate even the tiniest dose of any rate control med and thankfully don’t have high BP.

AF has never stopped me travelling but combination of a flare + AF has. I don’t worry and seem to be blessed that I don’t get anxious, very tired so I just go slower and get assistance as the worst part is getting through the airports!

I have to say I am a believer in Lifestyle Medicine - which is far more than diet or losing weight but it doesn’t help everyone.

@Blueflags - I get your cardiologist’s caution in prescribing anti-arrhythmias as they have serious consequences for many people and need regular monitoring. It would be very nice if there was a magic pill but sadly not.

Has an alternative none steroid drug such as Methotrexate ever been suggested?

[Drone01]

Like Paul, I find your bisoprolol dosage very high and imagine your resting heart rate is pretty low. Is it maybe slowing you down and compounding your lack of exercise? Perhaps you would feel better with less, though how you control your blood pressure would need to be addressed. After I knew my own heart status (from echocardiogram) I decided to stop bisoprolol altogether and my occasional AF heart rate rises to 200bpm, but only for 30-40 mins. However, I’m pretty fit with a heart in good shape and have no difficulty in operating at 130-145 bpm in normal sinus rhythm, albeit for minutes rather than hours.

If all you do in PAF is rest, travelling should be straightforward when you’re not having to move around. And you can easily be treated as having reduced mobility and taken by buggy/wheelchair to and from planes (and trains). So maybe finding ways of reducing your anxiety about PAF whilst travelling and promoting your relaxation during travel is more important than controlling the AF if it occurs?

[TracyAdmin Partner]

Hello

Thank you for sharing your post on the Forum, if you would like any support regarding your concerns, please contact the Patient Services Team at the AF Association; heartrhythmalliance.org/afa...

We will be hosting an online coffee morning next week, Wednesday 29 May at 11.00am-12.30pm to discuss 'Travelling with an Arrhythmia'

This will be the perfect place to ask your questions to other fellow AF patients who can share their experiences with you.

For further details on how to join, please visit: heartrhythmalliance.org/afa...

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