PAF under control? But periods of high heart rate

[Deskford]

Hi

I was diagnosed with PAF a year ago and after much trial and error with my drug regime, went, at the end of January this year, on a prescription of 100mg Flecainide twice a day, 12.5mg of Atenolol once a day, 5mg of Apixaban twice a day and 20mg of Omeprazole once a day. The drug taking split is usually 9-10am and 9-10pm.

From having AF episodes on half the days of a month up to Christmas, I now have just one or two but every 4 or 5 nights, starting from midnight onwards, a racing heart, characterized by breaking out in a cold sweat and accompanied by a thumping chest. I usually go to bed around 11.30pm.

According to the ECG I take regularly with my Withings Scan watch 2, these are not AF episodes but High Heart Rate readings. They peak at 140BPM, bottom out at circa 60BPM. Over the following 12 to 18 hours, the racing heart syndrome gradually subsides and by late afternoon/early evening I’m back to NSR.

I cannot pinpoint any trigger for this phenomenon, I eat a small meal between 5 and 6 pm, drink plenty of water, no coffee after 4.pm, a very occasional glass of wine ( but not after 7pm).

My BP is fine, ditto my weight and heart structure.

I see my GP for a review early next month and wonder if my Atenolol dose should be increased slightly, or even as a PIP, to counter this nocturnal heart fluttering.

Anybody else had this problem and been able to pinpoint any triggers I haven’t? Thanks in advance.

[mjames1]

With that much of a afib/tachycardia burden, and all that Flecainide, you should be seeing an electrophysiologist (ep) not a GP. They would also be best at analyzing the ekg's generated by your watch and might put you on continuous monitoring with a Holter device. Blood tests might be ordered..

Ironically Flecainide can be pro-arrhythmic and can sometimes trigger atrial flutter or other dangerous arrhythmias, which is what may be going on.

If you cannot get an appointment with an electrophysiologist on a timely basis, personally, I would head to the nearest A&E during your next episode . With the high heart rate., sweats and a thumping heart they will take you seriously enough to run the necessary testing.

Jim

[Deskford in reply to mjames1]

Thanks Jim

I should have mentioned that I have actually had all the tests via a private consultant cardiologist, including a 2 week ZIO monitoring, (last September). At his behest, I moved from Bisoprolol to 50mg x 2 of Flecainide and when that didn’t work up to 100mg x 2 a day. He wants me to try Amiodarone, but I am wary of this drug, given its significant side effects. I take your point about Flecainide and arrhythmia and will discuss with my GP. I am waiting to be seen by an NHS cardiologist with a view to an ablation but given the length of the waiting list, was hoping to better control my condition during this waiting period.

[baba in reply to Deskford]

Have you shown the home ECG's to a cardiologist?Did you have similar episodes when on the ZIO monitor?

[Deskford in reply to baba]

Hi Baba The ZIO monitor showed that I was in AF circa 30% of the time. The longest time being 18 hours. I didn’t have any high heart rate graphs as far as I am aware. I haven’t been able to show my smart watch ECGs to either my cardiologist or my GP. I have had an ECG at my GPs at Christmas that did show high heart beat. That prompted a further private cardiologist consultation at the end of January that resulted in my current drug regime.

I plan to take my home ECGs to my next GP consultation in early April.

[Karendeena in reply to mjames1]

Yep, flecainide did this to me.

[jeanjeannie50]

Wine contains a preservative sulphides/sulphites this can trigger AF. Just see how you get on without the wine.

For me artificial sweeteners were a sure trigger for my AF too.

Jean

[Flimmeri in reply to jeanjeannie50]

Hi Jean! Artificial sweeteners, interesting! Have you used stevia? I understand it’s a natural sweetener! I always use that if any. Now wondering if that gives me afibs? Thanks

[jeanjeannie50 in reply to Flimmeri]

I rarely use any sweeteners but if I do now I use normal sugar. I did try one of the natural sweeteners but didn't like the taste.

[Flimmeri in reply to jeanjeannie50]

Thank you Jean

[Jst455 in reply to jeanjeannie50]

That's interesting Jean. Sweeteners are very bad for IBS, and I'm sure my IBS and AF are linked.

[Lellibet]

I know this may sound boring but I have given up alcohol completely. I must admit that until I caught this cold I’ve hardly had an episode since I stopped

[Karendeena]

Flecainide did this to me so my consultant swapped me to Sotalol

[Lynden63 in reply to Karendeena]

Have you had any side effects from Sotalol? I have PAF (rarely). The hospital cardiologist wants me on Sotalol, but I was terrified when I read about side effects.

[Karendeena in reply to Lynden63]

Sotalol is fine with me, in fact I had the ablation last March and my EP has kept me on a low dose. What side effects are you referring to that scares you? Quite a few of us in this group are on Sotalol. My EP says it's one of the best drugs, but reminds me he doesn't have a share in it 😜

[Lynden63 in reply to Karendeena]

Thanks so much for your reply - it was really encouraging. The cardiologist wants me on Sotalol (40mg twice a day). I know what my triggers for afib are: overdoing things - not enough sleep, not enough water, covid. On the odd occasion food additives give me palpitations, overheating in high humidity. I take a number of heart-health supplements. My doctor has not insisted I go on Sotalol yet. But I don't want to damage my heart. If I do have episodes, they last 1-2hrs and then settle. I just read about basic side effects - I guess I can manage them, but was worried how they would affect me with my job.

[Karendeena in reply to Lynden63]

I am sure you will be fine. Be careful with supplements though and always check with your EP (assuming you are under one) as this can be a problem if taken with other heart medication. I was told to check every time. I am on Sotalol 40mg twice daily that is a low dose.

[Lynden63 in reply to Karendeena]

When I ended up in A&E in April 2024, no tests (EKG) were done. I only saw a cadiologist before they released me. He said my heart and lungs looked good on my xray, no stroke risk, and to get my gp to put me on Sotalol. He didn't explain anything about afib to me. My gp didn't push it as at thectime I wanted to try lifestyle changes first. I recently went in for a general checkup and she said my heart sounded good - didn't mention Sotalol, and I am not under a Cardiologist or EP care. I can't afford to go privately. Our one EP in the hospital of the city I live in (New Zealand) has resigned. Our health system is in a shambles (thanks to covid). I will see if my gp will refer me to a cardiologist or EP. I definitely live in fear of going into afib st any time although it happens fairly rarely.

[Karendeena in reply to Lynden63]

It must be pretty difficult for you to get the answers you need with regards to your AF. I would definitely get a referral to an EP if you can't afford a private consultancy. GPs are not permitted to prescribe Sotalol as far as I am aware (well not in the UK anyway). You really need a specialist and cardiologists don't specialise in AF. As you probably already know AF is a rogue condition that more often than not is progressive. If it's treated correctly early on then the chances of success are much improved whether that be through medication or ablation, I had the latter in the end and 🤞 the beast has stayed away from my door for the last 12 months

[Lynden63 in reply to Karendeena]

Thanks Karendeena. Any information I have got has been through forums lke this one. I would love to have an ablation done (especially as I have read it has great success when done early on). In NZ ablations seem to be resorted to later rather than earlier. Here's hoping your post-ablation success journey will be a longterm one.

[Karendeena in reply to Lynden63]

Yes, they tend to have higher success rates (around 80 to 85%) if done when your AF is paroxysmal. Once a pattern has established and it becomes persistent then it's more difficult to treat with ablation and success rates drop considerably. I am lucky to have a really good EP who is a Professor and Chairman of the British Cardiovascular Society. I have learned so much from him .My AF was horrendous and I just couldn't cope with it. Although the episodes only came about every 3 or 4 months, the heart rate was very high and they lasted around 36 hours

[Lynden63 in reply to Karendeena]

That's great that you have such a good EP. Mine came fortnightly for a couple of months early last year. I'm sure exhaustion was a trigger, then nothing from July until late December and a couple in February. I have 2 new grand children and know exhaustion has been a part of them. My heartrate goes up to around 160 (and very hard to take), but only for about 2 hours. But I feel like I have a time bomb inside and never know when it will trigger, which makes me scared of working and also going out of town for weekends.

[Karendeena in reply to Lynden63]

I know that feeling all too well! I was scared to go anywhere and wouldn't even consider a holiday out of the Country. Since last year I have been to Majorca and Cyprus and off again to Cyprus in April all being well. I tend to forget about AF now although I am painfully aware it could rear it's ugly head at anytime 😔What are your plans going forward, is there nothing you can do but sit and wait? ❤️

[Lynden63 in reply to Karendeena]

Are you on Sotalol now? I think I will go to my gp and ask for a referral to an EP (if there is one nearby - or maybe in a nearby city). I really would like some professional info (all I have learned about PAF has been here or from my own research online). But I think I'm getting more anxious about strokes, heart failure, etc moving forward, especially as I'm not taking any medication for it. I am 61 and not overweight at all, but not fit either, so want to work on that. Thanks for hearing me out. It's mch appreciated.

[Karendeena in reply to Lynden63]

You're welcome, you couldn't be more anxious than I was when first diagnosed. I was 62 and right in the middle of covid. I ended up in resus in my own. I have learned so much since then and that's why I decided on ablation as I knew in my heart (forgive the pun) that it was progressing. I really had no alternative as my EP couldn't increase my meds anymore as my BP was too low.

I am still in Sotalol 40mg twice daily, not sure if this will be the case long term but it's my safety net at the moment and my EP likes 'belt and braces'. This is a low dose.

The main thing you need to know is need for anticoagulants if you score 1 or more on the Chadsvac tool. This reduces the risk of stroke which is about the best protection you can get.

[secondtry]

No caffeine after 12pm, no alcohol at all, look at diet, look at supplements and research ablations incl, new kid on the block, Pulsed Field Ablation.

[CDreamer]

If the majority of your episodes start during sleep time then I would ask to be tested for sleep apnea. I had similar and although my sleep apnea was mild, as soon as it was treated - no nocturnal AF. I still had AF at other times but the night after night of nocturnal AF stopped. My O2sats would drop, my HR increase to compensate = AF.

Your GP should be able to give you the Epworth Sleepiness Questionnaire (see below on how to google) and if you score accordingly refer you for testing which involves being fitted with monitors overnight, you can be at home.

The other possible explanation is vagal AF in that some people with vagal AF find that exercise triggers AF whilst in others quite the opposite - rest, especially laying prone, triggers AF. You could try sleeping with a wedge or lifting the head of the bed so it’s 15 degrees.

I would also ask to be referred to an EP - not a cardiologist or if you want to avoid the wait, see one privately. In some areas the route to see an EP seems to be GP > Cardiologist > EP.

Purely my opinion but in your position, I would try to get to the underlying cause of the tachycardia - print out your stats from your wearables and push and question harder and get to speak to an EP not a cardiologist.

Look up - sleep-apnoea-trust.org/wp-content/uploads/2020/08/Epworth-Sleepiness-Scale-for-SATA.pdf At least rule out one of the most common causes of nocturnal tachycardia and AF.

If all the above is ruled out and Flecainide is not helping my view has always been that why take a drug that is not helping and possibly harming. Flecainide is also very toxic. Amiodarone is more toxic but it is also the most effective drug in the arsenal to beat AF, it certainly helped my husband who is still taking a maintenance dose some 4 years after loading dose. He has had some thyroid dysfunction and is more photosensitive so need to avoid direct sunlight but most people cannot believe he is 91 and still active.

I have realised that medicine is like a murder mystery - you need a great detective with the skills and persistence to pick up and review every clue so even the most obscure symptom can lead to a solution.

Hope you find your answers very soon.

[Deskford in reply to CDreamer]

Thank you for your reply, very useful indeed.

[Efka]

Just a possible curveball, I had similar many moons ago (no afib!), the racing heart laying down just about to fall asleep. For me it was thyroid (and adrenals). Once that was address it disappeared.

[anik123 in reply to Efka]

Did you have tests to confirm thyroid and adrenals? What kind of tests confirm it's adrenals?

[Efka in reply to anik123]

I’m in England so the NHS can’t really help (well definitely not easy to get help anyway).

I was incredibly fortunate to see a retired endocrinologist (Barry Durrant Peatfield) whom helped and suggested where I could get thyroid meds privately. Sadly he passed away a few years back.

His treatment motto was to never support the thyroid without also supporting the adrenals (with glandulars). Also Vit C and complex B as a minimum.

He based it on both physical examination and tests.

For adrenals and hormones generally the Dutch test is highly regarded by most functional medicine practitioners.

There is a good thyroid group on here worth a follow: Thyroid UK

Also a good website (although I haven’t looked at for a long time) was: stop the thyroid madness

Hope that helps, Eva

[anik123 in reply to Efka]

Thank you for your reply

[Auriculaire]

You say you eat a small meal between 5 pm and 6pm. Have you considered low blood sugar? This can cause tachycardia and sweats.

[Ppiman]

My friend has similar - no AF but tachycardia. He has it less frequently than you and can use a Valsalva manoeuvre at times to return the rate to normal. He’s been hospitalised a few times when that has failed.

There are no “triggers” in my or his view, only a more or less permanent micro-structural changes in nerve pathways that cause the ventricles to speed up and become less efficient. These could be atrial, in the AV node or, rarely, ventricular.

Steve

[Hugheart]

Hi Deskford

I keep saying I believe I am the “resident physician” who has also been affected by AF.

I have a few thoughts. One is tachycardia as u describe could be runs of atrial tachycardia and is considered an arrthymia that is treated like AF.

Secondly based on my experience having converted my 2 years of AF to sinus rhythm now for 18 1/2 months to date , there are several issues that I had to address and some have been noted in this stream. Aspartame has been conclusively proven in a highly recognized cardiology journal to increase AF by 20 % if you drink 6 or more 10ounce cans a week. . Sleep apnea for sure shoukd be addresed based on your nocturnal story. I found I needed to record my EKGS 3-4 times a day to determine my rhythm status. Hydration is essential as I found out and one article indicates that 10% of AF individuals are chronically dehydrated. The best way to know is get a urine strip that measures specific gravity. If it is above 1.020 it indicates need to drink more fluids. If u wake up at night having to urinate frequently for no other causes such as diabetes or for males with prostate enlargement), it may occur from a hormone excreted by overstimulated atria as part of AF. Although not said I wonder if in that situation one may be excreting large amounts of magnesium (Mg) and potassium.(K). Even if one doesn’t have frequent urination there is plenty of evidence that deficiencies of Mg and K correlate with high incidence of AF. That is my last point which is both need to be replenished and that means eating foods fortified in both and adding good scientific based supplements of Mg and possibly K. If you are interested you might want to read my BIO.

‘Hug your heart handsomeness needs hug’

Hugheart

[Coco51]

Just to add to the above. If you research Ompeprazole - which you take - you'll find it can deplete Magnesium. Official advice is that some people may need a supplement. (Magnesium drip is a firstline treatment if you present with AF in A&E.)

An EP well known to this forum suggested I take Magnesium Taurate for heart rhythm and a small dose of Vitamin C to counteract inflammation. Infections and stress cause inflammation. Stressing about your AF then turns into a vicious circle! Anyway I feel these two things have helped. So have relaxation techniques.

Increasing beta blockers - if you can tolerate it - could help. I have done this recently, but have a pacemaker so that stops the heart going too slowly.

Good luck

[Hugheart in reply to Coco51]

The comment about omeprazole is correct. It causes your stomach acids to alkalanize reducing acids needed for magnesium absorption.

Higheart

[Coco51 in reply to Hugheart]

Thank you. That makes me wonder how much of the supplement is absorbed? It seems to help though.

[Hugheart in reply to Coco51]

You are correct questioning how much Mg gets absorbed . Something to consider with agreement with your health care professional Maybe take Mg supplement in the evening and omeprazole in the morning. Also consider eating foods rich in Mg later in the day . I eat roasted pumpkin seeds as an excellent source of Mg.

Hugheart

[Coco51 in reply to Hugheart]

Good ideas. Thank you I love pumpkin seeds. And dark chocolate!

[37Polly]

I avoided amiodarone by taking Tikosyn successfully for over six years, though it requires a three day hospitalization to begin safely, and I am sure must be prescribed by an EP. It had zero side effects and was pretty successful until it began to fail and I finally had an ablation seven months ago.

Also at my very first Emergency Room experience where I was diagnosed with atypical aflutter and afib the first thing the did was give me intravenous magnesium. I have taken daily since especially before bedtime, and it mostly has helped keep my heart rate level. Even longish Epsom Salt soaks have helped. (Its exogenous Magnesium….suggested by a cardiac intern ).

Watch U tube video by cardiologist in York, England…Sanjay Gupta…very helpful, and recommended the magnesium. Best of luck