What do you do once flecainide stops working?!

Sorry to post a similar thread again. But in short I was diagnosed with Afib at 27 and I’m 29 now. It progressed somewhat fast over a few months and by the time I was put on flecainide at 27 I was in Afib 35% of the time in just a one day period of my Holter monitor. But I was getting long episodes every day where I’d feel like I was going to pass out and it was trrrible. Anyway I was put on 200mg of flec a day which is quite a high dose but it instantly started working and I was so happy. Last few weeks I’ve felt like it may be slowly starting to stop working (hence I made a thread a few weeks ago asking people how long flec worked for them). Like I would wake up in the night and feel my heart miss a few beats or during the day I would feel That fluttering feeling in my chest but then whenever i would go to check my pulse it would be fine again. Now just before I had a solid 5 minute episode where I was feeling my pulse and 100% knew it was Afib. Just feeling that feeling again brought back so many bad memories and now I feel so anxious. Does this mean flecainide is starting to fail and it’s just downhill from here?

Also what is next after flecainide is there a stronger medication? I am from New Zealand so whilst I could have an ablation we do not have any experts here so much higher likelihood of failure. And also I’m so scared of an ablation

Is there anything I can do? I hate the feeling of Afib I don’t want this to stop working it depresses me so much

All stronger drugs comes with stronger side effects if you plan on taking for 30-50 years. Ask your EP.

Sodium channel blockers, which slow your heart's ability to conduct electricity:
Flecainide (Tambocor)
Propafenone (Rythmol)
Quinidine

Potassium channel blockers, which slow the electrical signals that cause AFib:
Amiodarone (Cordarone, Nexterone,Pacerone),-causes some lung and other organ damage. Ask your doctor if it’s appropriate and safe long term. You are only in your 20s.
Dofetilide (Tikosyn)- requires a short hospitalization stay
Sotalol (Betapace, Sorine, Sotylize)

And then there is multaq which is a weaker side effect drug.

Carey would know about the pros and cons to these drugs.

Nobody in their 20s (or 30s, 40s, or even 50s) should be taking amiodarone for anything more than a short-term basis until they've exhausted all other options.

All the other choices come with their own pros and cons. Given the choice, I would try Multaq first. It has few side effects and it's quite safe.

I seriously doubt there are no electrophysiology experts in NZ. Of course there are. I highly recommend that you start doing some homework and find out who they are. You really don't want to be spending the next 50-60 years taking any of those drugs.

I think I mentioned I was put on Ticosyn (Defetilide) when Flec would not keep me in rhythm. I didnt feel terrible on it but it never kept me in rhythm 100% of the time. I was only on it for a couple months.

You need to discuss options with your EP. Staying on anti-arrhythmic drugs long term probably isn't something you want, Also, like you have already experienced. Afib can progress.



Edited 1 time(s). Last edit at 09/25/2020 06:57PM by rocketritch.

Another option is since Dr N performs ablations 3 days every 3 weeks in Thousand Oaks, the closest to New Zealand, to contact his billing to see if he offers a cash price. Maybe he doesn’t offer a cash price but it’s worth asking. Then do the same with the hospital and anesthesiologist.

I had a cash price discount at Cedars-Sinai once for a tricky surgery. I was in for 5 nights admitted (it’s an expensive hospital) and paid a blanket $10,000. You have to fill out a financial aid application. That price included everything —meds, operating room, the whole package. I made a separate cash package with the surgeon and anesthesiologist as well.

Also due to Will’s young age, perhaps he would be the first ablation of the day and not stay overnight. Last week’s ablation, even at my age and health, I was given that option due to my covid19 concerns to get the first ablation at 7am and get discharged at the Cath lab as an out patient without overnight admission.

Travel and housing will be tricky. Airfares are hurting now because of covid19 so he may luck out on a deal if he investigates fares. AirB&B housing is an option opposed to a hotel.

Just a thought... he could get a fixed heart possible for the cost or less of a mid priced car.

St. Davids has a cash price but don't know about Thousand Oaks. Probably they do since almost all hospitals do.

Last I heard, which was a couple of years ago, cash price on an ablation with Natale is in the neighborhood of $20,000 USD. Airfare looks to be around $2K-$5K for one adult. Figure another thousand for hotel, meals and incidentals.

And I have no idea what NZ requires of citizens returning from the most infected country in the world, but I bet it's strict.

Getting on a trans-Pacific flight the same day or even the day after an ablation sounds like a really bad idea.

Yes, Dr. Natale is a Gold Standard EP, many of us would say THE Gold Standard; at least I would. Nevertheless, one should not overlook the best source of information on this forum, Shannon himself. I'll bet he knows off the top of his head or at worst could quickly get the name of top EPs in New Zealand.

Plus Uber. You need a car or driver from airport to airport and air bnb to hospital. I checked prices. Rooms in existing residential homes start at $42/night. Private apartment from $69-89. A shuttle to the airport from lax to TO is doable if you use a promo code. Maybe cheaper than an Uber or Lyft driver.

At his age it won’t be cheap but the alternative is 50-60 years on drugs or living with af. The cost is an investment. Hospitals let you pay over time if that helps. So it boils down to a cost of a mid price car. Or perhaps he has family who would pay. My cash operation was so tricky the only way I had it done was from a gift from my parents.

Hey Will - yes AF sucks but consider you're lucky in that flec works for you and that you're not a Wallaby. Nothing worked for me once I had AF. Normal life NSR until 56, a few events then persistent AF. Had the N ablation but now in flutter (expected) and in the blanking blank period.


LA - Auckland typically less than $1000 r/t in my experience. Same for Houston usually so either one.

I think walk the tightrope the best you can until it proves futile. It took me about a year to give in to reality.

I just checked my flight history ( I subscribe to a number of services) and flights from Dallas to Auckland were as low as $557 r/t for sale in March and would cover this time frame (mar-dec 2020) - Airline is Air New Zealand.

NLAMA-how did your ecv go today?
My af @ 158 hr finally converted during the night. What a relief! It was my worst af ever!
Plus while comparing ablations, my index on 9-19 I couldn’t lift my light purse 2 months later. Today a friend came with groceries and I was able to lift them effortlessly. It’s all baby steps.

Will, I hope you do your homework and see how much a cash price ablation will cost. During my chemo, I was able to pay $100 a month using the hospitals payment plan. Hospitals also has a sliding scale if you contact financial aid. You may, with hospital payments and cash discount, be able to afford the ablation.



Edited 1 time(s). Last edit at 09/11/2020 03:48PM by susan.d.

I didn't get one scheduled - my local loma-linda cardiologist believes I should go vegan and eat graham crackers and kelloggs cereals to avoid self-pleasure. He also wants me on statins. So he's not really helpful.

I just checked and the cash price for an ablation with Natale in Austin is $40K. That's about what insurance companies typically pay, so that makes sense.

I also did some quick checking and there are plenty of EPs in New Zealand. I'm sure some are perfectly capable, and we can help you figure out which ones those are. Meanwhile, you need to wrap your head around the idea of ablation because you can't spend the next 50-60 years of your life on antiarrhythmic meds. They all have major side effects, and many of them have a tendency to eventually stop working or even become pro-arrhythmic. So sooner or later you'll probably find yourself on amiodarone, and you really, really don't want to be on that long-term. It has many severe, even life-threatening side effects. An ablation is really the only reasonable course of action for you.

Hi guys. Thanks for all the replies. I have started to watch the videos on stopafib.org and amiodarone doesn’t sound like something I’d want to take. When I last spoke to my cardiologist they told me to stay on flec as long as I tolerate it and then if it stops working or I get side effects then it’s time for an ablation. I can get an ablation for free in New Zealand if I wait another year (that’s when my health insurance will kick in for pre existing conditions) so when I next go to the cardiologist I’ll try get a feeling for who does the most volume.

@notlyingaboutmyafib - sorry you hear that! That would be incredibly frustrating if the meds don’t work at all! are there many experts in Australia? Guessing “n ablation” means you went to the US and had dr natale do it? So now do you have to deal with flutter for a bit and then it’s basically cured? (Fingers crossed). If aus has experts to ablate that would be a shorter flight for me and there’s not much covid over there. Taking a huge flight to America just for dr Natale may not necessarily be the best idea given I would have a huge flight back. Plus I would probably want the covid pandemic to pass before going there. 40k USD is also A LOT.

Am I correct in assuming that now I’ve had an episode on flec that it’s the beginning of the end of its effectiveness for me? I was hoping to get a good 15 years out of the drug, not 2!!! So after that the option is ablation which I hear only works half the time or you need multiple. If that works then you’re basically cured of Afib right? Or will it then come back again 15-20 years later😣. If Afib fails then its amiodarone and if that fails its just Afib for life and just deal with rate control? Or something like a maze and open heart surgery?


Though as Afib begets Afib that would mean as long as flec is working I won’t be getting scar tissue or an enlarged Atria right? Which means an ablation would have a higher chance of working on my heart than one that was more scarred up?


If I have an ablation in nz and it fails and I then need to try dr natale - will that lessen my chance of being Afib free? (Ie does a failed ablation make it less likely that a second ablation would work). If I find one who does at least 50 a year here then I shouldn’t be too worse off?

I understand some people stop their Afib just on magnesium alone. I’ve been taking 2000mg of magnesium glycinAte a day so it was disheartening to know my Afib managed to get past that and flecainide and still show its ugly head. Also as 200mg flec is barely working there goes my hopes of
Ever dropping to 100mg a day to find a minimum effective dose. If anything I’ll be on the max dose of 300 before I know it...and still only be 29-30


@susan why are you having AF at 158?! Didn’t you just have an ablation, isn’t that mean to be a cure? I understand you could get ectopics and flutter after an ablation but why are you still getting af? And aren’t you on a beta blocker or anything to stop it going faster. So much for me to learn!! Ablation sounds like a serious operation though if you cAnt even lift a purse after it for some time. A few months recovery and no exercise etc sounds like
Hell



Edited 5 time(s). Last edit at 09/11/2020 07:44PM by Will1789.

Quote
Will1789
Though as Afib begets Afib that would mean as long as flec is working I won’t be getting scar tissue or an enlarged Atria right? Which means an ablation would have a higher chance of working on my heart than one that was more scarred up?

Yes. Stopping the AF is what counts, not how you stop it. But I wouldn't recommend that you spend years on drugs just to avoid your fear of ablation. You're too young to waste your best years on that and the data are pretty clear that ablation is superior to drugs as a first line treatment.

Quote

If I have an ablation in nz and it fails and I then need to try dr natale - will that lessen my chance of being Afib free? (Ie does a failed ablation make it less likely that a second ablation would work). If I find one who does at least 50 a year here then I shouldn’t be too worse off?

No, having a prior ablation (or more than one) won't reduce your chances of a successful ablation with an elite EP such as Natale (and he's not the only one). Natale specializes in "problem cases" and many of his patients have had multiple prior ablations (I'm one of them).

But I would look for someone with more volume than 50 per year. I don't know if that's possible in NZ but I bet it is.

Will - I am in US but have been an All Blacks fan since the early 90s. I am looking at a $5 note that Joe Rokocoko and Malili Muliaina signed for me back in RWC 2003.

From what I can tell the best ablationists are those that do hundreds a year and not just dozens. Hopefully someone like that exists for you in NZ.

I am hoping it's cured and I am a one and done. Fingers crossed.



Edited 1 time(s). Last edit at 09/11/2020 08:20PM by NotLyingAboutMyAfib.

Will - try what Steve Carr or George does - maybe that will work for you long term.

Will- the first 3 months or so after an ablation you have inflammation from the burning until the burns heal to scar tissue around the areas that AF were firing. Am I saying this right Carey? It’s called the blanking period and quite common. That is why I and not lying in afib both (Our ablation 6 days apart) are having some arrhythmia currently. My af stopped at 2am and I’m fine today.

Having an ablation (index or first ablation) is no guarantee of a one and done ablation cure for everyone. It depends on many factors. Carey recently posted an excellent list explaining some people need a repeat ablation or “touch-up”. Carey, I’m 100% sure you can explain this better than my botched explanation. And if the second ablation involves the isolation burning of the LAA, there is a up to 40% chance a second LAA isolation ablation is necessary because the LAA is a thin tissue and the EP can’t burn as deeply as other thicker tissue in the heart. I’m giving a LAA as an example for a hypothetical reason for a touchup. There could be many reasons why the first index ablation needs a touchup. Carey is the one who wrote the great post and I am confident he can explain it way way better than me.

NLAMA-that sucks, I hope you can get your ecv. Cereal and crackers used to trigger my af from the carb count. I hope you find a better doctor. I know of one who does tele-appointments. She is at Emery now and accepts many insurance plans. She is very knowledgeable about cardiac diets. Pm me if you are interested. She just moved from CA and was my cardiologist who helped keep me Af free for years. I actually can say I would trust her with my life. She is extremely thorough.



Edited 1 time(s). Last edit at 09/11/2020 09:06PM by susan.d.

@carey I am very lucky so far that I have tolerated the drugs without much in the way of side effects. But perhaps that’s just because I have age on my side. Notlyiingaboutmyafib mentioned you have a special technique to deal with yours. Do you mind sharing?

@notlyingaboutafib good to see you’re an all blacks fan!! Nice!! And whAt is it that Steve and Carey do? Is there a specific technique. I was watching the videos on the stop Afib website and I had always been under the impression that as long as you are not in Afib you don’t have an increased stroke risk. Whereas in one of the videos they said there is no evidence to support that theory but that’s what they suspect to be true. Therefore just by merely having Afib, even though it’s under control with medication, could mean I am at a risk of stroke. And since I got Afib so young that does give me cause for concern. I think as soon as my health insurance kicks in for the pre existing I will look into an ablation.

@susan well I hope you had Have been cured! Must be a nerve wracking 3 months though to wait it out and see if it stops. I am also interested in diet. Most people seem to suggest a plant based or fully vegan diet? I was reading some sources that say to avoid fat but others say that olive oil is really good for the heart. Like having a Mediterranean diet with chicken and fish as well seems easier to follow than fully vegetarian or vegan.

Quote
Will1789
And what is it that Steve and George do? Is there a specific technique.

A search of Steve Carr's posts on our site is here: [www.afibbers.org]
His website is here: [www.carrafibdietinfo.com]

As for me, this is what I prescribed for my 34 year old son-in-law, which is pretty much what I've done for ~16 years. [www.afibbers.org] In short, magnesium to bowel tolerance, 4g (2 tsp) potassium as citrate in water consumed over the day, moderate endurance exercise - limiting heart rate to the lactate threshold or 180-age, 2 or so grams of taurine/day, limit calcium intake (mostly by eliminating dairy) diet is not vegan but does control glucose/insulin spikes. I don't drink much alcohol, but was an issue for my son-in-law and he reduced his consumption dramatically.

Thanks George. I read Steve’s website and it appears he has 5000 IU of vitamin D a day, low calcium intake (mainly from eggs) and a lot of cranberries. Interesting to me though that he doesn’t take any magnesium potasssium or taurine like everyone else here. Further to that he consumes 400g of meat A DAY. I don’t know if anyone has read the book “the China study” here, but apparently animal protein is VERY bad for the heart so I found that surprising. Perhaps he may want to reconsider that position.

So in summary if I were to do the following:

5000 IU vitamin d per day
Magnesium to bowel tolerance
Potassium and taurine supplementation
Healthy diet not too high in animal products, low in diary and add some cranberries
Moderate exercise (I currently do a lot anyway. 5 weight sessions per week 1.5 hours each and 3 40 minute sessions of moderate cardio - running up stairs)
I never drink anyway or consume any caffeine


What I found scary on Steve’s website is the graph showing the amount of patients that progress to PERSISTENT AFIB over time - and these are patients who are being treated optimally by their cardiologist and alrady on medications. I was under the impression that Afib begits Afib and if you are say on flec and it’s controlling it then there should be no progression as such. But this seems to contradict that and suggests that even treated patients - 50% will be permanent by 10 years and 90% by 25 years. Suggesting I will very likely be permanent by my mid 40s... (having been diagnosed At 27, almost 30 now)

That is a rather bleak prognosis. My Afib was also progressing quite fast. I note Steve would have episodes lasting multiple hours but no more frequent than every 8 days. Whereas I was in Afib about 8 hours every single day for a few months before I got treatment and realised what was going on (I was dealing with a stressful break up at the time of a 6 year relationship who had cheated on me so I assumed I had just become a panicky mess and in need of anxiety meds but no it was actually Afib)



Edited 4 time(s). Last edit at 09/12/2020 07:38PM by Will1789.

Quote
Will1789
That is a rather bleak prognosis. My Afib was also progressing quite fast. I note Steve would have episodes lasting multiple hours but no more frequent than every 8 days. Whereas I was in Afib about 8 hours every single day for a few months before I got treatment and realised what was going on.

Everybody is different. I started out with episodes every 10-12 days lasting 6-9 hours. That lasted about 2 months. Then I had an episode that would not convert and lasted 2 1/2 months. My heart rate in afib was ~80 and my EP suggested I just stay out of rhythm. I came up with beginnings of the protocol I posted above and asked for an on demand flecainide script & told him my plan. He accepted. The flec converted the 2 1/2 month episode and I've been following (and refining) my plan ever since (about 16 years). Today, I've had 3 episodes in 2 years, each converted with flec and lasting about an hour. At least in my case, afib has not been progressive. I also did not have an auspicious beginning.

Whether meat is good or not, I won't argue. I will say you need to control glycemia well and some plant based eating plans do not do a good job of this. I would rank hyperinsulinemia as a root cause of many chronic diseases in the world. There are a number of ways to control it.

Second this very much!!

"I will say you need to control glycemia well and some plant based eating plans do not do a good job of this. I would rank hyperinsulinemia as a root cause of many chronic diseases in the world."

I am CERTAIN that my heart issues (high CAC and afib) are caused by glycation and inflamation due to hyperinsulinemia/glycemia and gut permeability caused by "healthy whole grains" and refined/ultrarefined carbs.

I farted for the first time in a year while at St Davids on their 'heart healthy diet' that is anything but. (lots of grains, carbs, fake eggs, corn oil and margarine, etc.)

I got afibb 28ish started flec around 30 never progressed to permanent or persistent 40yrs old now. Stopped meds 10days prior to ablation (6/10/20)and got 3 short episodes that converted on their own. Happy to see they converted without meds12 years after 1st episode was worried I'd be in permanent.

No afibb 3 months post ablation. Dealing with ectopic beats but they should settle, so I'm told😂.

NLAMA—You should try gluten free and dairy free if you think gut permeability is a root cause. I’ve been gluten free, corn free, oats free and daily free since 2009. Day and night difference to my gut.

My PGP graduated from Harvard. They had a great study with Saccharomyces Boulardii. It was a game changer for me GI and Cardio wise.
[www.gastrojournal.org]

On leaky guts-
[www.ncbi.nlm.nih.gov]



Edited 2 time(s). Last edit at 09/12/2020 11:29PM by susan.d.

Thank you everyone.

@george thank you for your help. I have ordered some potassium citrate and vitamin d3. Is there an advantage to drinking the potassium Throughout the day and why do you include sodium (don’t we get enough of that in our diet as it is?) I was planning on just mixing my magnesium powder, taurine, potassium And d3 in a big shake with some vegetables and cranberries and consume that in the evening to help curb the Afib so I can get into a good habit of taking all I need at once.
But woah a 2.5 month episode you definitely had it really bad and if that method works for you there’s hope. Think I’ll try this a few months and really get my levels high in d3 and then get some blood work done and if the levels are high I may try stop taking flec and see what happens. If I could go to a PIP approach that would be great but suppose I best consult my cardiologist as I have control release flec not the PIP sort.

I don’t know anything about glycemia but will look it up. Doubt I am anywhere near a diabetes candidate at my age.


@knein we are in a similar boat then; but I am 10 years younger and just starting on the journey. What meds did you take for the last 12 years? (Flecainide?) and did you notice any points in that 12 year period where the Afib managed to appear despite the medication? Congrats on the potentially successful ablation. Fingers crossed!!



Edited 2 time(s). Last edit at 09/13/2020 08:20AM by Will1789.

Susan - already on it - and preaching to the masses. I had 1.5 million weekly reach on Twitter last year and then shut it down because it was overwhelming my life.

Will - don't let them just look at A1c and glucose - have them test fasting insulin. It predicts diabetes and pre diabetes years in advance.

It's important to water fast only 13 hours before labs.

I agree with some here... AFIB is not GUARANTEED to progess to full-time. I've had it for over 23 yerars now, I've always converted on my own.
My EP at the Cleveland Clinic told me that he thought I would NOT progess to full-time afib at this point. After my 1st ablation, I had 14 good years with only intermittent epispodes, some years better than others.

Will - Welcome. I have sent you a Private Message (PM)

There are two former afibbers that I correspond with who live in New Zealand. I'll email them and ask them to
connect with you regarding what EPs they consult.

I totally agree with the suggestions you've received about electrolyte balancing and all.

Jackie

Quote
Will1789
I have ordered some potassium citrate and vitamin d3. Is there an advantage to drinking the potassium Throughout the day and why do you include sodium (don’t we get enough of that in our diet as it is?) I was planning on just mixing my magnesium powder, taurine, potassium And d3 in a big shake with some vegetables and cranberries and consume that in the evening to help curb the Afib so I can get into a good habit of taking all I need at once.
But woah a 2.5 month episode you definitely had it really bad and if that method works for you there’s hope. Think I’ll try this a few months and really get my levels high in d3 and then get some blood work done and if the levels are high I may try stop taking flec and see what happens. If I could go to a PIP approach that would be great but suppose I best consult my cardiologist as I have control release flec not the PIP sort.

I don’t know anything about glycemia but will look it up. Doubt I am anywhere near a diabetes candidate at my age.

As to potassium over the day. There is an illness called periodic paralysis. Changes in serum potassium can cause paralysis in the sufferers. Some of their creative people figured out there was a correlation between saliva and serum potassium. They worked out a procedure to use agricultural potassium meters to measure saliva and correlate with potassium. Some people here, like Carey and Shannon got these meters. What Carey would tell you is that with a bolus of oral potassium, any excess will be immediately urinated out in a person with healthy kidneys. Hence it makes sense to consume it relatively slowly over the day. For some, with magnesium, consuming it dissolved in water over the day will allow taking a greater amount before bowel tolerance is reached.

Rather than going off flec immediately, getting a form that could be cut and slowly reducing dosage would allow you to see what the lowest effective dose is. Even if you can't get to zero, a lower dose might be better.

As to glycemia, the late Joseph Kraft MD did ~15,000 oral glucose tolerance tests with insulin assays. He found a lot of people (75 or 80%, if memory serves) with normal glucose response had abnormal insulin responses, which he called "diabetes in situ," and he said would predict future diabetes in 10 or 20 years. My friend, Catherine Crofts (who lives in Auckland), did her PhD thesis using Kraft's data to determine if there was a simpler test that would be predictive. Her results suggested that a insulin test exactly 2 hours after a bolus dose of glucose could be predictive. Her thesis and Kraft's original paper are linked in my link on his name.

On the meat/veggie debate. I ate like Colin Campbell and others suggest as a low fat vegan for 15 years prior to afib and 2 while having afib. A lack of taurine may have contributed to the start of my afib (in addition to chronic fitness). Despite being very fit, my glycemia was suboptimal. I later realized I was getting nighttime hypoglycemia, waking up hot and sweaty. Many times this coincided with afib onset at 3AM. Subsequent to keto adapting in 2009, this never happened. This hypoglycemia isn't just low blood sugar, it is low blood sugar when there is no other fuel in the system. Today, I can fast for 5-7 days and drop my blood sugar into the 50's mg/dL (2.8-3.0 mmol/L) or lower with no issue. This is because my ketone system will ramp up and provide alternative fuel when the glucose drops.

I personally eat an omnivorous diet. While I eat a lot of plants, I avoid those with lectins that I react to as well as other anti-nutrients such as phytates. I also avoid eating seed oils (like soy, corn, canola & etc). My genetics don't do well with saturated fats (increasing sdLDL & oxLDL {small dense LDL & oxidized LDL}), so my animal protein comes from pastured eggs, white fish and shellfish.

George 100% right once again. He's a good guru.

Thank you. Shall try potassium in Water over the day. I don’t think keto would be for me. Hard to get the calories required without going very high in fat and I am pretty active so eat a fair bit. I shall try largely mplant based chicken and fish and limit red meat to once a week, that seems somewhat balanced. Can be no harm in incorporating more vegetarian meals either.


I shall try get my electrolyte levels up and d3 up over coming months then get the levels checked and when in ideal range for Afib prevention I’ll try lower the flec dose. I suppose I could get those diabetes markers checked then too

More generally; whAt do you guys used to track your heart rate? Kardia only works when you decide to use it right? There’s no 24/7 monitor function. Would want something to check if I go out of ethythm while sleeping so i can monitor if the flec is working and my Afib burden. I suppose it’s also possible that what feels like Afib breaking through the flec could be a run of ectopics or atrial flutter?

Anyone got experience with an Apple Watch? Can that give a reliable 24-7 reading whilst sleeping like a Holter would. Or are there better devices out there?

Many thanks
Will



Edited 1 time(s). Last edit at 09/13/2020 10:35PM by Will1789.

The Apple Watch can check your hr day and night so that’s helpful. Mine only needs an hour to charge. If you set up the alerts, it can alert you if your hr is low or high the past 30 minutes. I set mine for 50 low and 100 high. The watch will also alert you (in settings) if you have been in AF the prior 30 minutes.

I use it on whim if I feel PVCs. I just release after a few seconds and don’t do a 30 second record. I prefer my Kardia 6L for more accuracy readings. I found the iWatch alerts me I in AF when I’m not-false positive readings that I confirm with my Kardia.

The advantage for me of the iWatch is checking my hr during flutter especially when I’m sleeping plus the faster instant check for arrhythmia. The Kardia takes 30 seconds to walk over and fish out from my purse and launch the app. I get curious since my recent ablation (blanking period), whenever I get short 5-10 second run of tachy. That’s when I use the iWatch to capture it instantly. I don’t obsessively check—only in sudden rapid short tachy do I take a reading. It saves my battery time if I randomly use it. Otherwise I use other apps on the watch like my stored music and text and email alerts.

My EP has all of his patients enrolled in the Kardia program. We are required to take one reading a day. Today I feel really good-cleaned out my pond and I wouldn’t even think of taking a Kardia reading except for the annoying automated reminders. Once I take my daily ekg, the reminder stops.

I am from NZ and if I thought Natto would help you I would recommend it, but it sounds as though (IMO) you are too far advanced and should seriously consider an ablation.
I looked around at my options a couple of years ago and found I could get a local ablation on the health system but had to accept the local EP doing it. We have no choice unless we pay for it. The cost was about $35K NZD.
So my plan was to have a free ablation in NZ and if I needing a 2nd ablation, pay the money and go to USA.
The EP with the best reputation at the time was Dr Martin Stiles of Hamilton.

I hope that helps.



Edited 1 time(s). Last edit at 09/14/2020 04:18PM by colindo.

Thanks Susan. So that means when you wake up in the morning the Apple Watch will only detect Afib from the last 30 minutes not the entire night? And it’s not as accurate as kardia. Therefore probably best for me to get a kardia and do a reading everyday but I won’t necessArily be able to get a super timely reading to capture any Afib. Though you can get kardia attached to your phone can’t you? That could be a good idea then it’s always within reach I think


Hi Colin. Thanks for your reply on here. I shall flick you an email!

Will- if I wake up in AF I will see af alerts every 30 minutes I was in straight AF. Could be a multiple of alerts. You need to set it up in settings.

Yes the Kardia uses a phone app.

Nga mihi, Will,

I am a 71 year-old NZer who has had AF since 2002, brought about by a rough-as-hell parachute jump on an overly windy day. Once diagnosed, I did my best to counter paroxysmal AF using natural means. Hans's books were a great help in this, so too was the information posted by Afibber Forum members, whose collective goodwill, knowledge and advice was very helpful.( It is an amazing resource for afibbers and I remain eternally grateful for it.)

In spite of trying every alternative treatment imaginable, by 2009 I was experiencing AF events every second day and my ability to live a constructive life was being greatly impaired. The only good thing was that I could tell immediately when my heart went out of rhythm and when it popped back in again. I also almost always self-converted within 24 hours and at no time did I require cardio conversion.

In 2009 I visited a cardiologist who prescribed 200mg of flecainide as an anti-arrhythmic and diltiazem as a rate control drug after taking atrial flutter into account. My cardio believed anything less than 150mg of flec a day was not worthwhile and he advised against having an ablation in NZ. "Wait until the technology and local skill level improve.") It was also the case then - and may still be - that you could not get an ablation under the public health system unless you were unable to sustain a prescribed drug treatment. Once you broke through the drugs you were eligible for ablation. This was 2009, remember, and I have no doubt that things have improved since then but the caveat re drugs/ablation may still apply and as Colindo describes above you might have to accept whoever is nominated as an EP by your local health board, unless you go private. Unfortunately, we don't have a Dr Natale here in NZ and Covid 19 makes a trip to the US difficult, risky and needlessly expensive. In 2009 Martin Stiles, who had only recently returned to NZ after studying with Prash Sanders at Royal Adelaide Hospital and in the UK, would have been my choice of EP and would still be, if it comes to that. He now works privately in Hamilton.

I have been very stable on flecainide for the last eleven years with no apparent side effects other than a little distortion of peripheral vision, which makes backing a trailer difficult. Other than that, no regrets. I continue to religiously take the magic three supplements - potassium gluconate, magnesium chelate and taurine - daily, and take an additional hit of potassium whenever I feel a little jumpy - potassium works wonders for me. Incidentally, if you need to buy supplements like these, Iherb, which is linked to by the forum, does a great job of servicing customers in NZ.

I still make a point of avoiding activities which I've found increase the likelihood of causing AF - e.g. consuming excess alcohol, getting knickers in a twist, or doing anything that involves rapid horizontal arm movement, like sawing wood or washing windows - go figure - and of course, jumping out of aeroplanes. However, unlike you I am no longer a young man. If I was, I think I would be following the advice of the forum members who suggest that having an ablation earlier rather than later is the way to go.

Will, I hope you obtain relief one way or the other. Learning to live with Afib is a real challenge but we are now blessed to have the medical means to ablate the worst of it. I will be interested to see how you get on. All the best,
Simon

Great post Simon.

I had a so-far successful ablation at Bordeaux in 2018 but I chuckled when I read your sawing wood comment as when I was out in the woods looking for sticks this last Jan/Feb I noticed I could run into a run of palpitations (not AF as regular) when sawing (and I mean really vigorously) through a thick bow with small pruning saw - especially if bent right over. I wonder what it is about that movement?! I too in the past - 1999 to 2018 - always noted that an AF episode could come on after I'd been particularly angry and/or annoyed about something.

Anyway, hoping the Flec continues to help - I certainly know of folks here in the UK who have stayed AF-free on it for 25 years and more. I think if it's worked for you for this long then you might well end up being one of those folks. I think those folks for whom it won't work will find that out within a year or two max.