What path should I take?

I am new on the forum from Down Under, so glad I discovered this place as I have learnt so much in the last 2 days.

My first post is quite long and I must apologize for that as I want to document everything in case people on the forum may have some answers and a possible solution.

It started when I was 58 years old about 16 months ago while on my yearly six day Hinchinbrook Island trek.
(We live close to the Great Barrier Reef in Far North Queensland Australia and it is tropical. Lots of great hikes.)

Night 2 of our hike was quite warm, we were all fast asleep in our jungle hammocks. I had bought a new rain fly just the week before, if I had bought a better rain fly I doubt I would have had my first attack when I did.

At about 2am it started to rain, a full on tropical downpour with water flowing through my new (and useless) rain fly.

I was lying in a hot, saturated sleeping bag and there was not a breath of wind. It was so stressful at the time, then it started. It felt as if some small animal was inside my chest trying to get out. I thought I was having some type of heart attack and was about to die.

The attack lasted perhaps 50 minutes. I later put it down to stress of being hot and drenched, I didn’t mention it to my fellow hikers.

4 days later, asleep in my bed at home I woke at 3:30am and the animal was back, racing around in my chest until I got out of bed at 6am. I then made a doctor's appointment scheduled for 3 days later.

It started each morning at about the same time, keeping me awake until I got out of bed.

The doctor put me on an ECG which showed my heart was perfect. She then referred me to a Cardiologist, who I was to see a week later. At the Cardiologist practice I was given an electrocardiogram and they took an ECG. Everything was normal, I explained what I was experiencing and he suggested I wear a Holter monitor for 24 hours. He offered no explanation as to what I was experiencing.

It was a 3 week wait for the Holter monitor, then another 3 week wait to see the Cardiologist again, which I had adjusted to 2 weeks. But still another 5 weeks ahead of me before I would find out what was going on.

The attacks lessened, perhaps every 2nd night or every 3rd night. Same time at 3:30am which made me think if it was my heart slowing right down at 3:30 am which was causing it. The attacks then went away completely for weeks.

A week before I was to collect the Holter monitor it came back, at the exact same time and would go away a few hours later. I was then hoping it would hang around long enough as I wanted the Holter monitor to record it so I could get some answers.

As it was not happening every night it was not concerning me much, I thought as soon as I see the Cardiologist he would just tell me that it will go away and is something harmless. After all, he did not seem that concerned and no one was in a rush to work out what it was.

The night of having the Holter monitor I had an attack, I was quite happy it was recorded, I could now finally sort this issue out.

I returned the Holter monitor then waited another 2 weeks with attacks only every 2nd or 3rd night or even 5 nights without an attack. Sometimes the attack would resolve in 30 minutes by itself which I took as the problem going away by itself.

When I saw the Cardiologist he had a big smile and enthusiastically told me what the problem was, I had Atrial Fibrillation. Well he didn’t seem worried so that made me feel good. He said when you get an attack just take a 100mg Tambocor Flecainide tablet and it will go away.

I did take the Flecainide a few times, I was not sure if it was that tablet that stopped the Afib as I was also naturally resolving. Then 6 days later the Afib stopped completely for over 5 months, not one attack! I was cured! So I thought.

Then it started again but only once or twice a month, again at the same time. I would sometimes take the Pill in the Pocket, other times I would just let it resolve itself as I really didn’t want to take drugs.

This pattern continued for 9 months, then last month on the 14th of July 2022 I caught a terrible cold or flu, the Afib was now occurring more often and then it was every night. The cold must have brought it on. I made another appointment with my Cardiologist, the earliest I could see him was the 8th of August, a 3 week wait.

In the meantime I bought an Afib watch, the French made Withings ScanWatch to record what was going on.

They did another electrocardiogram and I showed my ecg printed reports from my watch, I was then put on 25mg of metoprolol and 50mg of flecainide morning and night which worked wonders. The Afib was gone.

3 days later I tested positive for Covid, Omicon B5, I previously had the 2 Pfizer vaccines plus the Pfizer booster so was not that concerned. The Covid seemed to be milder than the cold/flu I had weeks before.

What was to follow on top of the covid and getting over the cold/flu was what I believe were side effects to the metoprolol but could also be partially from Covid. Nausea, confusion, depression and blurry vision plus all the effects shared by metoprolol and Covid, shortness of breath, trouble breathing etc etc.

I rang the Cardiologist and said I need to get off this poison, I would rather be a happy afiibber than a depressed and sick one. I was advised to only use the Pill in the Pocket 100mg flecainide when attacks occur.

I then discovered afibbers.org and some other sites to read more about the condition. I needed to get serious about this problem.

I was Afib free for 3 days and then it was back, I still today have a Covid cough which seems to be from the lungs. I feel this is part of my current Afib problem, sickness must play a huge role with Afib.

I have also been back to my doctor and she is referring me to an EP on my request after reading that I have been seeing the wrong heart person the whole time.

Last Saturday I had an episode soon after laying down to go to bed, this was a first. I decided to try holding my breath for 40 seconds, something I read here on this forum. My Afib at 120bpm resolved immediately and was gone for 15 minutes. Wow!

I purposely was not going to take flecainide that night as it was Sunday the next day, I could catch up on sleep then as this discovery was too exciting for sleep. I was planning to sleep if I could only in between episodes and record everything on my watch. I held my breath again for 40 seconds and this time again resolved the Afib immediately for 1 hour and 15 minutes.

It was now 3:45 am and I felt a tiny flutter, my watch showed 58bpm and displayed Inconclusive Signs of other arrhythmia? What does that mean? Then one minute later Afib at 68bpm. Was this how an episode starts? I held my breath and it resolved immediately again.

20 minutes later the Afib was back at 120bpm, held breath and then resolved. But back again 20 minutes later at 101bpm. This time holding my breath was not working, bugger, I then rolled on my stomach and arched up using my arms and then held my breath. It was resolved again immediately. This is weird!

1 hour 10 minutes later it returned and a simple hold of my breath resolved the episode. I then got out of bed (very tired but worthwhile I thought) and it was gone. My next Afib episode was not until 2am the next morning.

The last 2 nights it has come on at 8pm watching TV after a 7pm dinner. What is going on, that's never happened before! Holding my breath seems to resolve the Afib, but last night I did take flecainide so I was Afib free when I went to bed for a good nights sleep.

I am assuming I have Vagal Afib and would love some feedback from other people here on the forum.

I have just started taking Magnesium Glycinate with a plan to get to 400 mg in the next week or two. I have ordered powdered Taurine which I plan to take 3000mg spread out throughout the day, I have also started drinking low sodium V8 juice plus Bananas as we have lots of plantations here in North Queensland.

I am seeing a Chiropractor tomorrow as I have had some tension in my left shoulder and neck. Plus a vertebrae in the middle of the back feels ‘out’. I have researched the guy and he talks about Vagal Tone. Who knows, it may have something to do with my Afib.

Once again I apologize for such a lengthy post. I hope people here can help direct me on the right path.

Robert

Hi Robert

I'm across the "Ditch" in New Zealand.

I am a 51 year old male, and had my first AFib episode approx. 2 years ago.

My Afib appears to be linked to stress. I am a farm manager, fairly fit, weigh 70 kg, active. Last year, my wife's mother, who had terminal cancer and Parkinsons disease came to live with us. I have no regrets opening our house to the mother in law, but in the 14 months that she lived with us (until she went to Hospice for the last 3 weeks of her life) I went into AFib 17 times. It was a very stressful time for our family (teenage kids included). We also had the sister in law come to stay for a couple of months (she is very highly strung). Of the 17 episodes, I went into the emergency department of Hospital only 3 times.

I am on daily dose of Flecanide (100mg) and Diltiazem (120mg) slow release capsule, for the past 18 months. When I have an Afib attack it normally resolves itself, I just take an extra Diltiazem capsule and 4-6 hours later I am back into normal rhythm.

Since the Mother n Law has passed away (last October), life has been far less stressful. This year I have been only had 2 episodes of AFib (6 months apart), both times stress related to a mechanical breakdown of equipment on the farm at the worst possible time (once while on summer holiday, back in January and away from the farm - a few stressful phone calls to organise a contractor to fix the problem).When stressed I feel the adrenaline pumping, the heart rate goes through the roof, and the Afib often kicks in a few hours later in the early hours of the morning - I wake up to AFib.

I am booked in for an Ablation in a couple of weeks, on the 14th September. I was booked in 8 eight weeks ago, but my daughter came down with Covid 4 days before the operation, so we had to postpond the procedure to 14th Sept.

I am looking at buying the Withings smart scan watch (through JBHifi).

Hopefully the Ablation puts the AFib at bay for a few years. I accept that I am probably in for the long haul with this, and that it is likely to get worst with age. The Cardiologist things that if the Ablation is successful I may be able to drop the daily Flecanide an Diltiazem and have PIP if needed.

If you want to share experiences etc send me a PM. I don't know anyone else of my age (50's) that gets AFib. It could be good to share the load. Up to you.

All the best

Cheers
Blake

"Last Saturday I had an episode soon after laying down to go to bed, this was a first. I decided to try holding my breath for 40 seconds, something I read here on this forum. My Afib at 120bpm resolved immediately and was gone for 15 minutes. Wow!

I purposely was not going to take flecainide that night as it was Sunday the next day, I could catch up on sleep then as this discovery was too exciting for sleep. I was planning to sleep if I could only in between episodes and record everything on my watch. I held my breath again for 40 seconds and this time again resolved the Afib immediately for 1 hour and 15 minutes.

It was now 3:45 am and I felt a tiny flutter, my watch showed 58bpm and displayed Inconclusive Signs of other arrhythmia? What does that mean? Then one minute later Afib at 68bpm. Was this how an episode starts? I held my breath and it resolved immediately again.

20 minutes later the Afib was back at 120bpm, held breath and then resolved. But back again 20 minutes later at 101bpm. This time holding my breath was not working, bugger, I then rolled on my stomach and arched up using my arms and then held my breath. It was resolved again immediately. This is weird!

1 hour 10 minutes later it returned and a simple hold of my breath resolved the episode. I then got out of bed (very tired but worthwhile I thought) and it was gone. My next Afib episode was not until 2am the next morning."

_______________________________________________________________________________________________

Did you have a Holter monitor on during this? or just the watch device?

Sounds like you may have been going back and forth from AFIB,FIB-Flutter and Atrial Flutter.
You could have been going back and forth with AFIB and NSR, but it seems to me that if so, you would have sustained the NSR for a longer period of time. Atrial Flutter can feel like NSR with steady beat and normal rate.

Flecainide helps alot of people, but it does often cause Flutter, and migrates AFIB to FIB/Flutter, or straight Flutter.

Your experiences sound like what I have been getting trying to covert out of AFIB using Flecainide and breathing exercises periodically over the last 3 years. I have my own EKG machine, so I was able to verify all of this. It usually gets me to sustained NSR, but takes multiple tries.

Also of note:

As an alternative to Metropolol many of us use Diltiazem or Diltiazem and a cardio-selective beta-blocker like Bystolic in Combination. This does not usually cause the sedation associated with Metropolol. Diliazem usually doesn't sedate people, and The Bystolic does not cause sedation, as it it is a cardio-selective up to 10mg/day.

That is interesting, thanks for the information.

All my readings are from my Withings Scanwatch.

The next night I had a similar evening where it started whilst watching TV at 8:30pm, I used the Valsalva maneuver and resolved my Afib for 90 minutes to 10pm. To me it felt like NSR.

Then the episodes after 10pm would resolve for only short periods and felt like heart flutters, this continued until midnight when I decided to take 100mg of Flecainide.

I have been Afib free for 3 days without any drugs, my episodes usually occur when going to bed or in the middle of the night.

Today I had Afib at about 5:30pm which is very unusual for me. I tried the Valsalva maneuver for 10 minutes without success, so I took a Flecainide pill. I wish I had not taken the pill as my Afib resolved as I swallowed it!

I really want to try everything without drugs and keep records in the hope that I might somehow master this illness.

What type of EKG machine do you have?

Robert

"What type of EKG machine do you have?"

Mine is a brand called Fukuda Denshi. It is 20-25 years old. I didn't have much to spend so I got it for less than $200 on Ebay. It does work, just too old for parts and support documents online. If I did it again I would spend closer to 300, and get something not over 15 years old.

It has saved some trips to the Dr's office, as sometimes the Cardiologist/EP wants an EKG in order to proceed with treatment. Also since I am researching this conversion method I need it.

Also getting your own EKG machine is easier if you have someone there to hook you up and do it for you. Not hard as far as figuring it out, just combersome and tricky to get all 12 leads hooked up, and then press the button without one of the leads falling off.



Edited 1 time(s). Last edit at 09/04/2022 03:48AM by The Anti-Fib.

How many years can one go on controlling Afib through breath without the need to consider ablation? That is holding a breath to get back to NSR.

I seem to be able to do it quite easily, usually within 30 seconds. On the occasions I can't resolve the Afib after trying for 20 minutes I take 100mg Flecainide.

I had NSR for 3 days, then yesterday at 3:15 in the afternoon watching Football I had Afib at 112bpm (unusual as I usually get AFIB at night in bed). I held my breath and within 30 seconds I was in NSR at 70bpm.

A bit over 2 hours later at 5:35pm I was in Afib at 150bpm after cleaning a shower, I think it was a higher bpm due to the workload. It took 11 minutes of breath work to bring it back to NSR where it stayed until 7:11am this morning. I then rolled onto my left side in bed and I was in Afib at 102bpm. Back to my right side and one breath hold and straight back to NSR at 60bpm and have been for the last 7 hours.

OzRib- has anyone put you on blood thinners (NOACs) like Eliquis?

No. I have not been put on blood thinners.

Quote
OzRob
How many years can one go on controlling Afib through breath without the need to consider ablation? That is holding a breath to get back to NSR.

Nobody can say. From what you post, it sounds like your afib is pretty frequent. Afib is generally, though not always, progressive. You'd like to have the ablation prior to afib becoming persistent.

You've mentioned other actions you are taking (electrolytes, chiro & etc.) to hopefully reduce your episode frequency. If these actions are successful, then that is one answer, if they aren't, that is another.

If you get to the point of wanting an ablation, check back here as not all EP's are equal. I know there are some recommendations for ablating EP's in Oz.

The Afib only started about 8 weeks ago after being dormant after many, many months and infrequently. It was brought on by a bad cold and then when that cleared, Covid.

It has been almost daily during this 8 week period. I was free for about 10 days when given Flecainide and metoprolol morning and night. The metoprolol made me quite sick so the cardiologist said stop them and just go back to Flecainide on demand.

I was also free of Afib for 3 whole days just last week.

Interestingly last night we went to a local noddle restaurant at 6:30pm, whist waiting outside for a table I noticed my heart was a bit unusual.

The bpm dropped to 47bpm, then got as low as 39bpm. Climbed back to 74bpm but 10 minutes later Afib at 120bpm. Took 3 tries and 2 minutes using the Valsalva Maneuver to bring it back the 59bpm.

Is it common for bpm to drop before an Afib episode?

At 10:30pm, as soon as I lay down in bed, Afib again. Tried for about 25 mins to resolve by breath, unsuccessful. So took 100mg of Flecainide and 1 hour later back to NSR.

I still have a bit of a covid cough, usually late in the day as it cools down and wonder if this is connected to the ongoing episodes.

Do I still have Paroxysmal Afib after 8 weeks of this?

This Afib is a real pain in the backside!

Quote
OzRob
Do I still have Paroxysmal Afib after 8 weeks of this?

Yes. Persistent afib means it literally never stops at all for over a week. If it stops at all, even briefly, during a one week period it's paroxysmal.

Hi Carey,

Thanks for that. So as long as it is paroxysmal can I assume you should try every trick there is try and control the Afib before considering an Ablation?

I have started on Magnesium and lots of Bananas for Potassium, ordered Taurine the other day online as we can't get it locally. They sent the wrong product so need to wait a bit longer for that.

I have not seen an EP to date, but I asked my doctor for a referral to one I did some research on. Just waiting now.

Really want to stay off daily medications so I can try everything mentioned on this forum.

"The bpm dropped to 47bpm, then got as low as 39bpm. Climbed back to 74bpm but 10 minutes later Afib at 120bpm. Took 3 tries and 2 minutes using the Valsalva Maneuver to bring it back the 59bpm."

Yes, you could be going in and out of AFIB, while in AFIB your device may have a hard time accurately measuring HR, from the variability in pulse rate and strength, you could do a pulse finger check over 10-15 to verify.

In addition, this also could be Atrial Flutter, or a combination of AFIB,A-Flutter and NSR. In A-Flutter, the conduction ratios of signals to the ventricles can change at an instant, resulting HR changes sort of like engine rpm changes while shifting gears. For example from my own experience:

3:1 ratio = 105-110bpm
4:1 ratio = 78-80bpm
5:1 ratio = 62-63bpm
6:1 ratio = 37-38bmp

Each ratio if multiplied adds up to a Flutter rate in Atria of about 310-320bmp.



Edited 1 time(s). Last edit at 09/04/2022 10:08PM by The Anti-Fib.

Quote
OzRob
So as long as it is paroxysmal can I assume you should try every trick there is try and control the Afib before considering an Ablation?

No, I don't think so. And neither does the AHA, the Heart Rhythm Society, Medicare, and almost all private insurers in the US. Ablation was once considered a last resort therapy, with the guidelines saying ablation was only appropriate after multiple antiarrhythmic drugs had failed. But ablations have improved vastly over the years while medications have not, so the current guidelines now consider ablation a first line therapy.

And there are good reasons for this aside from what I said above. Afib is a progressive disease. It gets worse, not better, over time, and ultimately it's likely to become persistent. One of the hallmark sayings about afib is "afib begets afib." The more time you spend in afib, the more your heart gets "shaped" to remain in afib. Actual changes occur in the cells of your atrial walls that make them more likely to generate and propagate afib. The longer this continues, the more difficult an ablation becomes. For someone with symptomatic afib, my recommendation and the recommendation of most EPs would be to seek an ablation as soon as possible.

But if you're going to consider an ablation, you need an EP who's done thousands of them, and you want it done at a center that does at least hundreds per year. No community or mid-sized hospitals. If you live in the boonies, expect to travel. And I don't mean all types of ablations; I mean specifically afib ablations. It's a fine balance of art, science, and manual skills. Do not be impressed with academic credentials, titles, doctor ratings web sites, and so forth. The first question out of your mouth to an EP you're considering for an ablation is how many afib ablations they've done in total, and how many they've done this year. You want the guy or gal who lives, eats and breaths afib ablations.



Edited 1 time(s). Last edit at 09/04/2022 10:06PM by Carey.

Oh, BTW, forget bananas when it comes to potassium. I don't know how they got their reputation for being high in potassium. Sure, they have some, but it's not impressive. There's more potassium in two little kiwi fruits than a banana. Some of the highest potassium foods are:

Kiwi fruit
Dried fruits (raisins, apricots)
Beans, lentils
Potatoes, especially sweet potatoes
Winter squash (acorn, butternut)
Spinach, broccoli
Beet greens
Avocado
Seafood, especially shellfish
Most meats

OK. I live in the Far North Queensland and in our town we have 2 EP's.

The one that has all the experience can't be seen until next year, that is just for an initial appointment!

GeorgeN here on the forum knows of some EP's in Australia, I am hoping he can provide me with his info as well as anyone else on this forum.

Living in a regional area has it's drawbacks...

Quote
OzRob
GeorgeN here on the forum knows of some EP's in Australia, I am hoping he can provide me with his info as well as anyone else on this forum.

In this link, Moderator Shannon provides a list from his notes at a conference where top EP Pierre Jais from Bordeaux Fr provided the list. Jais is an elite EP and one of the top in the world, so his list is something to pay attention to. Also read some of the comments following about some corrections to Shannon's notetaking.

Wow, that list brings me some confidence for having an ablation here in Australia.

I will start communicating with a couple of them.

Thank you for the information.