set pattern to PAF

[Janey1955]

I have had PAF for about 9 years. Symptoms tolerable but the attacks last about 12 hours. No diagnosed cause and cannot take medication owing to low heart rate just on apaxiban. Heart deemed to be too healthy to have an ablation & run even the low risk. I get an attack every 3 weeks, used to be less frequent, but now I know exactly when the attack will come. Certainly to the day if not to the hour. Does anyone else have a set pattern to their afib and does anyone know why if they do.

[jeanjeannie50]

Hi Janey

For many years my PAF attacks would happen every 4-6 weeks. Once I'd had one I'd know I would be clear of having another event for 4 weeks. No idea why this was. I've had AF for 18 years. Have had 3 ablations and I'm now in persistent AF, but with a reasonable heart rate between 60-90.

Jean

[Janey1955 in reply to jeanjeannie50]

I’m in an attack at the moment but my heart is only 84 although resting for me is 44. But I think that low rate is why my symptoms are quite mild. As long as it continues that way. Long attack this one though over 30 hours and counting

[jeanjeannie50]

I wonder if hormones have any part in attacks coming at regular intervals?

[Janey1955 in reply to jeanjeannie50]

I wondered that but at 67 would I have any hormones ?

[jeanjeannie50 in reply to Janey1955]

My last ablation was in July 2016 and I was 65 then and getting attacks as I said every 4-6 weeks. I can't think what else would have made them so regular.

[Bagrat in reply to Janey1955]

From what I understand yes. Otherwise why use hormonal manipulation for older people with breast cancer. Hormone levels continue to drop well after the menopause. This means less hormones but still some around, not sure how cyclical they are, I am now wanting to consult Mr Google ( other browsers are available)

[Ppiman in reply to Bagrat]

You might be interested to know that Google is a search engine, not a browser. This difference is important only if you want to control who sees and collects the personal information that you type in.

A browser is a piece of computer software, i.e. an app or program, such as Edge, Chrome, Firefox and Safari. Such programs have to be installed (or come pre-installed) and stay on your phone or computer and also need to be started up to be able to use them. Their job is rather hidden but it is to configure your Wi-Fi to allow you phone or computer to connect to a search engine, such as Google, Bing, Yahoo or DuckDuckGo.

It's the browser program that also sends your data and information to the search engine via your internet provider. The search engine is "in the cloud" and sits on a company’s computer or “server” owned by the likes of Microsoft Azure, Google Cloud and Amazon Web Services. So, when you use a browser, these cloud services link to a search engine of your choice - and most people choose Google, Bing or Yahoo.

If you want to keep your data and personal information safe and not to be shared and sold to marketers and political parties, then the best search engine is one strangely called “DuckDuck Go”. This search engine, used along with the Firefox browser, is pretty bullet proof in terms of stopping you being tracked, or your data harvested.

However, if you use Apple products, the safest of all by a clear mile is Apple's on Safari browser, but only when it is used with their new "Private Relay" app enabled. This offers unique, near total data security.

That was probably far too much information!

Steve

[Bagrat in reply to Ppiman]

Steve, thank you, not too much info at all. I like to know the far end of everything and my husband used firefox for quite a while. I'm afraid it is laziness that I use Chrome and familiarity that I head for Mr G. Will certainly look at DuckDuckGo.I fear my data is already spread far and wide as we shred our addresses religiously!!

[Ppiman in reply to Bagrat]

All our lives are logged and tracked! The Apple Safari with Private Relay is my current favourite idea and I’m rather pleased with Apple for doing it as it keeps all data private and secure - even from Apple.

Steve

[Bagrat in reply to Ppiman]

All set up with DuckDuckGo, thanks for the tip, Wendy

[Ppiman in reply to Bagrat]

I’m married to a Wendy, Wendy!!

DuckDuck Go has become very popular. I even saw it advertised on TV the other night. Its searches use mainly the Microsoft Bing search engine, rather than Google.

Steve

[Hidden in reply to Ppiman]

wow that’s just fantastic I thought the hacker community had finally cracked Apple security software

I’m straight now to the app and will report back

[Ppiman in reply to Hidden]

I’m not so naive that I think Apple to be all on our side, but that company really do seem to have security and user privacy much closer to heart than Microsoft or Google.

To use the new “Private Relay” privacy control, which hides Perry much all of your data from everyone, it seems, you do need to pay for extra for what is called iCloud+.

Steve

[Paulbounce]

Hi Janey.

An unusual one for me as I've never had a set pattern like that. However, it is not uncommon with afib to experience regular patterns of symptoms. Some people may notice that their afib episodes occur at certain times of the day, while others may experience them on specific days of the week or month.

There can be a number of reasons why afib follows a predictable pattern. For example, some people may be more prone to afib when they are under stress or when they have consumed certain types of food or drink. Other triggers can include changes in sleep patterns or physical activity levels.

Maybe it's worth you keeping a diary around the time you feel an attack looming. Note your stress levels and what you eat - maybe there's a trigger there. Maybe not.

I'm not sure it's worth ruling out an ablation because you have a healthy heart. In fact, that's the time to jump on board IMO. However, I'm not a doctor but would be tempted to have a second opinion about that one.

Paul

[Janey1955 in reply to Paulbounce]

yes. I think you are right. I sometimes wonder if he was trying to reduce his waiting list times. However if ablation is to relieve symptoms then I can lead a totally normal life whilst in an attack. Probably because even in afib the heart rate is only between 80 and 100

[Paulbounce in reply to Janey1955]

Sure Janey - I understand that. Treatment is to improve QOL which seems to be OK in your case. However, remember afib can be progressive so nipping it in the bud early on might help you in the long term. It's a hard call to make but I guess you must be guided by your medic.

Paul

[Janey1955 in reply to Paulbounce]

as you say a second opinion wouldn’t go amiss

[mjames1]

I've had similar patterns which seemed to defy triggers. If I did everything right, I could keep it at bay for just so long and then it did what it wanted to do. My thinking was that the heart needed a re-set every so often and afib was part of that reset. Then, once it ran its course, things would be calm for awhile. Unfortunately, the periods of calm became shorter and shorter so I needed other interventions such as anti-arrhythmics and ablation.

Jim

[Snowgirl65 in reply to mjames1]

Your theory sounds the same as mine, as I would have the same history of patterns and resets, until finally opted for ablation(s).

[secondtry]

I would keep a careful diary of your routine (social, work, leisure, food, supplements) and record AF episodes, pre-Af feelings and any other health type issues. This could highlight Lifestyle changes to test out to see if it reduces episodes. The episodes need to be stopped as are likely to progress further.

I would make a private cardiologist appointment and discuss the pros and cons of taking just Flecainide and at what dose level (maybe 200mgs given your AF history). This is an antiarythmic drug and not supposed to affect the heart rate. My heart rate was around 60 and my cardio said 9 yrs ago no BB or CB as would make me feel unwell and so far he has been right and Flec has served me well with no side effects showing up. I am seeing him today for a regular annual check-up, not had one since pre-covid, and will be quizzing him on the likely side effects if I keep taking the Flecainide as I think I need to do due to a sensitive Vagus Nerve and my brain still has the potential to set off an episode.

[Janey1955 in reply to secondtry]

can’t take flecanade. I was given it just as a pill in the pocket but it was starting to change the T waves. So can’t take anything to control it as anything else is too tricky with my very low heart beat

[jeff1257]

Hi. I don’t understand how your heart can be too healthy to have an ablation. I can understand it not being healthy enough, but how can too healthy be an issue? I would seek another opinion. Best of luck.

[Jetcat in reply to jeff1257]

I wondered the same thing too.? I would ask for a detailed explanation as to why I can’t have the procedure.!

[Finvola in reply to jeff1257]

I wondered about that too, Jeff - perhaps a typo by the poster?

[Janey1955 in reply to Finvola]

no not a typo. When in fib my heart rate is under 100 and the symptoms do not prevent me leading a normal life. My ep said ablation is to relieve symptoms and I have very few. He said ablation carries some risk and the health of my heart and few symptoms didn’t make him feel one should be carried out. He said if my afib became persistent he thought my heart would cope with it ! But was he just trying to reduce his waiting list

[Finvola in reply to Janey1955]

That's interesting, Janey. My EP had a similar approach - willing to carry out ablation but recommending that as Flecainide was working well with few side effects, I should wait. That was 7 years ago and so far, so good with Flecainide. He also told me that persistent AF wasn't as bad as PAF as one can get used to it.

[Janey1955 in reply to Finvola]

crikey it sounds like the same man. This was Leeds cardiology. But is that right I suppose it’s a risk either way.

[Finvola in reply to Janey1955]

😀 My guy was in Belfast and I trusted him and his advice as he left open a fast track to him for ablation, should I decide to go ahead. I agree that the risks are there with both intervention and drugs and I did a lot of thinking, finally deciding to stay on Flecainide and wait and see.

[Janey1955 in reply to Finvola]

problem is he didn’t leave a fast track for me and in fact discharged me ! I would have to go the gp route again.

[Budken in reply to jeff1257]

If your heart is healthy, Afib can usually be controlled with just medication. No need to intervene internally. I was told be three different cardiologists, including an EP, that Ablation should be the last resort.

[Janey1955 in reply to Budken]

I can’t take medication as my heart beat is too slow and flecanide started to change the T waves of my heart. Because my symptom burden isn’t high and ablations are there for the symptoms that’s why my ep elected to not carry out an ablation. But then he discharged me !!

[Janey1955 in reply to Budken]

yes but can’t take any of the medication

[RatPurdy]

Janey .....

Your AF journey sounds a lot like mine. I've had widely-spaced attacks since my late twenties but now at age 76 the spacing has decreased to 10 days. Intensity is mild and attacks last abt 12 to 15 hours.

The item of interest here may be the cyclic gastro-enteric effects on the vagal nerve. Every 10 days, plus or minus a day, I experience a massive desire to eat starting about 10 o'clock at night. If I yield to temptation, I am reduced to massive burps through the early part of the night, which usually coincide with the arrhythmia.

I have kept extensive records of food/drink for the last few years and it appears as though fatty foods and alcohol (even small amounts) set me off. Outside the ten-day period, the same foods and alcohol seem to have little effect.

I support the recommendations of Paul B : keep records, control fat intake, stop alcohol.

All the best, RatPurdy.

[Bagrat in reply to RatPurdy]

Nothing to do with post just amused that your "name" is a combination of mine plus my amazing Welsh Springer long gone.

[MisterMagoo]

I would definitely get a second opinion about not having an ablation and on Flecainide. My resting heart rate is in the low 50s and I'm on Flecainide and the waiting list for an ablation. Afib gets worse without treatment and harder to fix as it gets worse. The latest recommendation is to have an ablation ASAP after diagnosis because the chances of success are greater the better shape the heart is in.

[Janey1955 in reply to MisterMagoo]

yes I would have thought so. Can’t take flecanide as it started to change my T waves. My ep said he thought that even if I went into persistent afib my heart would cope ! All attacks so far had not damaged the heart at all

[doodle68]

Hi Janey it's strange how P-AF episodes come in patterns for some people .

I started with a couple of episodes a year , then once a month lasting 12 hours for a couple of years , then every 10 days for 20-22 hours , then every 7 days for 24 hours, and I now have episodes lasting 3-4 days twice a week (more while taking Flecainide which I have stopped)

I keep a daily log now .

I guess we AFers are all slightly different in the speed of progression which frequently happens with P-AF but the regular patterns of episodes are odd .

I am on a waiting list for an Ablation.

[Hidden]

these aren’t attacks just episodes. No symptoms so no ablation thank you very much Mr “can’t wait to fiddle around in your heart for 8 hours while your GA sends you loopy or worse, and I can almost definitely say I won’t kill you ….. Probably “

[Jetcat in reply to Hidden]

you can’t go wrong with abit of GA. 👍 I tried sedation for my first ablation and it was terrible ! I actually recovered quicker from GA too.👍

[jeanjeannie50 in reply to Jetcat]

Same here Jetcat. I had two ablations with sedation and far preferred the third one with a general anaesthetic. I recovered far quicker after that one too.

[Jetcat in reply to jeanjeannie50]

yes all in all a lot better. At least for us two anyway 👍x

[irene75359 in reply to jeanjeannie50]

I have had three GAs in the last two years and not once have I had any side effects. I had a hysterectomy at 43 and the GA then had a marked effect on me but the recent ones, absolutely none. Thankfully! Maybe they have fine-tuned the dosage? Just guessing.