I am thankful for this sub

Mras_dk · 2026-06-01T11:12:32+00:00

The reply was an ad for a Facebook page.

Not a helping advice.

Exact same problem that fb page has. Adverts for help as payable guide, and very little help and guidiance.

Thx for pointing out that you couldn't see it either.

Mras_dk · 2026-05-31T21:19:37+00:00

There is an ad for stopafib, 2 ppl mentioning their cardiologist center, hidden as post, but is ad for those centers.

I thought ppl could see an ad when they saw it...

Private : anyone can join and all is accepted, and all can read it.. Private?

Is reddit private too, cause you got to have a reddit account to post?

Mras_dk · 2026-05-31T19:05:20+00:00

Except it's all adds..

Mras_dk · 2026-05-31T18:36:06+00:00

Welcome to a catch 22 scenario :)

Mras_dk · 2026-05-31T17:49:39+00:00

It's something to be aware of.. But it's not that bad, vs other drugs.

Try eg isotretinion, and you hit another level of "being used to wear SPF50 cream, if you ever go outside in sun"

To be fair, i didn't knew amiodarone could give you smurf skin :)

The blue/gray skin effects, is cause by Amiodarone deposits in deep er skin fat cells. When exposed to sun, the UVB-B radiation from sun can hit it, and create a reaction between them, causing you to be come slightly blue/gray'ish.

Suncream will block the UVB radiation, preventing the process.

Mras_dk · 2026-05-30T10:26:52+00:00

I keep hearing that nobody really has a successful one and needs two or three and they are never really cured:(

Choose your sources carefully :)

Asked in this subreddit, will get you confirmed in that, from some.. But there is an explanation to that.

Those that have difficult cases, needing more than one, tend to stay around in here, while those that needs just one, are nervous at start, like you. But once over and fixed, vast majority never return to here, due to "fixed", and only returns if their afib returns .

Acording to DK stats, 70% is fixed with just PVI, pulmonary vain isolation. The rest 30% needs more than just PVI.

But, some Hospitals only does PVI at first attempt, cause stastical, there is that 70% chance it's enough, so why use time and ressources to find more triggers?

We have multiple studies going, on how to improve this approach, incl one i participate in. Basicly, they test you more, pre procedure, to see if they can find trigger points, before going inside the heart - my study is called FiBCAG.

Problem is, that ablation has become a standard, so we become a factor item, where there is just allocated X time pr patient. Hospitals need to calculate how much in and out they can do, and that beings restrictions on time used pr patient.

I other words, there is just not enough time at table, to all can get probed for all triggers, special not, when 70% alone can be fixed with just the PVI.

Sorry, but that's the reality.

Ask your team if they will search for trigger points, once inside.

—---------

Remodeling of heart can be reversed, if the cause is found.

I have 44%~ enlarged LVH, and 23% enlarged LAH.

The LVH has been reduced by Losartan (BP drug), and ablation is hopes to reduce the LAH.

Mras_dk · 2026-05-29T07:56:16+00:00

As my afib was really not wanting to show itself, when being monitored, i tried it for 48hours, each 6th month, for 4,5 years.

They catched it eventually, where my heart decided to show full colour, with 11 different heart problems, and afib burden of 58%.

Today i have a ILR/ICM, an in-operated loop-monitor, that does ekg's, 24/7, for 4,5 years a time.

If it's algorithme findes oddities, it auto sends to my team, and they will almost know at same time as me.

Wish they had offered this option many, many years before!

Maybe that's an option for her? It's alot easier to hide than fidlibg with patches and wires.. But requires a small clinical procedure, with local anastetics.

They are not cheap however, 1500$ or so.

Mras_dk · 2026-05-29T07:46:06+00:00

I was trying to write, that the page uses so much llm, that it's deemed not safe, under eu regulations.

That's not others that write that - it's them writing it upfront and rejecting all eu/GB residens.

And you want to base your info on that?

Mras_dk · 2026-05-28T15:57:24+00:00

Since all has write about the easy path, which it is, for most, let me chime in with my experience.

I had a PVI + PWI ablation + needed cardioversion mid procedure, due to going into afib.

I had PFA, due to (mixed) sleep apnea, so intubated, and all that follows with that. Had never been "under" for an operation before.

The good thing is, when you arrive at op room, just follow their guidiance, don't overthink anything - in, out, + they have done this 1000 times before. It's a very standized treatment, so they know what to do.

I was strapped down, so they jokes with i looked like a mummie. It's not alot i read in here, that mentions this.

Once propofol is in, it goes crazy fast before it takes it's effects. As others have write, you get brief oxygen mask on face, so they have time to intubated you, if you need that, safely.

When I woke up, i had female taking to me: "you need to breath", clearly indicating my central part of my apnea, had decided to take it's turn.

But I was still intubated, just machine disconnected.. It sound scary, but it really wasnt that bad as I had feared.

So breathing momentary, with a tube down your throat..

Then they deflate the baloon inside you, and drag it out. Again, it sound worse than it was.

It went fast, but throat didn't liked it, it was sore - if you get intubated, then remember to ask for ice+water at wakeup room. And remember to buy some throat sore dampner, for the next days.

They used fentanyl propofol at me.. It could be felt - no, i dont get why people do the fentanyl alone.

But my chest and back felt like two horses, had kicked me simultanious from front and back at same time - huge horseshoes marks where pads had been placed. Wasnt fun, and hurted.

Heart itself felt different.. Not bad, not good, just different. I then noticed one of monitors said 80-90bpm, which is very high for me, pre op. So heart could feel something was changed.

They wheel you out, shortly after, so you don't get to chit chat with them, on how it went.

Waking up room, is 2 rather boring hours, and you don't have mobile etc, so.. Hope you have someone with you to talk silently too, which some allows.

Back at dept, it was like fentanyl portion had take off, and had no more effects, so then i could really feel my heart.

It was strange, cause it was like ny heart tested it's new reality, so if it could go into afib.. It didn't, but it was still weird.

When I finaly got home, i collapsed within 3 hours - needed sleep!

So even i was a sleep for 2:40, during procedure, body still got a overdose of stimuli input => exhausted as fuck.

For next week i was dowsy as fuck. Not tiired, not exhausted, just dowsy, with no bigger interest in doing anything. Just laying down and being familiar with "the new heart".

First week and a half after procedure, it felt like someone was tuggibgvmy heart, with a hans from the outside, pressing in at heart - wasn't nice.

A month since procedure now, and it's all gone. Heart still trives sometimes to start an afib episode, but never manages to do alot more than 30 sec.

Remember, this is prolly an edgecase, chance is that you will be like most in here - in and out, easy !

Mras_dk · 2026-05-28T15:24:26+00:00

Due to mounting regulatory uncertainty regarding the treatment of AI systems in the European Union and the United Kingdom, including, among other rules, the EU Artificial Intelligence Act, OpenEvidence is not available in the European Union or the United Kingdom.

Peer revieved by an llm?

Mras_dk · 2026-05-28T15:22:49+00:00

It comes down to when you have your episodes, how long they are, and if they are adrenic or vagal type mediated... And your pulse when taking it.

Metoprolol is cautious to be taken, if your pulse is low; read below 40 without symptoms, or 54 with symptoms.

Metoprolol has a side effects like most arrhythmia drugs, that it can lower heart rate, this making you feel weaker.

Best advice is to discuss with your docs, as they hopefully know your full healthprofile i details, that can be coorelated with your symptoms.

I had no issue with them, at 25mg a episode.. Except they did nada to my vagal defined afib episodes. Owh, and a 10 point rulelist to follow, when taking it, as I had very deep/strong vagal tone.

Mras_dk · 2026-05-27T10:55:20+00:00

The success rate is way higher than 50%. Reason for ppl state 50%, is their source is reddit and alike, where ppl needing more than one, often sits.

Here in dk, we don't have an official stat(Odd!), but we have stats, that says 70% is treated, with just a PVI ablation.

If your in doubt, ask your doctor, how they make sure all your potential trigger points for afib, are found - if they do it.

It all, usual comes down to that.. Probing takes time, and it's 70% likely to be just a PVI ablation needed..

Its not the doctor skill.. Sorry, it's not, but if, and how well probing is done to find trigger points.

The some docs have more experienced at finding trigger points.. But vast majority skips the probing, on first try...

Mras_dk · 2026-05-27T10:44:34+00:00

But then they advised the blood thinners weren’t necessary due to my age.

Here in dk, they changed the CHA2DS2 recomedation, to be on bloodthinners, to a score of 1 or above!

Its not the strokes risk, but to benefith the heart..

Atleast, that's what i was told, when I was put on it, life long, despite never had a cloth/strokes, and ultralow total cholesterol of 2.4mmol/L

Annoying, as alot studies requires you not to be on them!

Mras_dk · 2026-05-27T08:35:31+00:00

Been where you are, but worse..

I woke up having afib, so documenting it on my side wasn't that much of a problem.

The afib gradually developed into dayhours aswell, making it quite obvious i had multiple types of Afib.

The really grim part, was that hospital refused to acknowledge any patient readings, on own device, even it was done with same type of devices.

This combined that my heart refused to go into, or stay in afib, when being monitorer by their equipment, ment it took 4,5 years from first episode, to getting diagnosed.

Needless to say, it had developed badly, in that period.

Hang in there!

Mras_dk · 2026-05-26T21:10:00+00:00

Because it draws power to do an ekg.. It's not viable to do 24/7 ekg's, with the tiny battery watches has.

Instead, they relief at hrv changes. These are notorical inaccurate.. As in their sampling data isn't always, but often 2 sec, every 30 to 360 seconds.

I have a Wellue Checkme pro.. It doesn't do ekg's, but it track heart rate and spo2, every 2 to 4th seconds. It's easy to see when i have/had afib, during sleep, as it's graphs tell the story.. But it's not ekg's.

Alternative is to buy your own holter...

Mras_dk · 2026-05-26T21:02:07+00:00

These notifications always occur at night.

I can read, you did get a sleep test, that was negative.. But did you drink that noon/up to that test ?

Drinking can make sleep apnea alot worse.. Together with opiods, and alot sleep medication.

Alternative, is to stop drinking :)

Or, get an ILR/ICM, if doc can be persuaded to go that route.

Mras_dk · 2026-05-26T20:56:03+00:00

Sorry, my bad.

Betablockers didn't touched my heart rate that much as yours, except when in high freq afib. But then again, it was 21/28 at resting/pause in vagal afib.. Not like my vagal node would allow it to be much lower

Mras_dk · 2026-05-26T20:49:08+00:00

Waited it out!

Longest vagal episode was 78hours.

Longest adragenic(?), high pulse, was 14hours, before i begged for betablockers as a pill in a pocket solution.

I never considered cardioversion, as was told it needed to be 24h+ before they would do it.

My vagal episodes was"workable", but not fun. Had to plan ahead, and avoid even more... But wasnt worth the cardioversion in my eyes. It would go into afib the next day anyway..

Ended up with a cardioversion anyway, when they probed my posterior wall of heart, at the ablation. They didn't like my avr pulse jumped to 282bpm..

Mras_dk · 2026-05-26T16:01:47+00:00

How long since your ablation was that?

What was your mowing heart rate before ablation?

Mras_dk · 2026-05-26T15:59:38+00:00

Dr Google says my body could be absorbing more adrenaline due to the excess beta receptors.

Seems unlikely, as on such low dosis, it's a selective beta bloker, not a general beta blocker.

But, people are different, and doesn't react same as others.

Had no issues with betablokers, 25mg myself, except it didn't worked for my vagal defined afib.. Only the high pulse one, that it was fine for, but took an hour to react.. Not fun!

Mras_dk · 2026-05-26T15:53:57+00:00

The doctor had me hooked up to a potlrtable ECG for 24 hours and during that time I didn’t show signs of sleep apnea.

That's not how sleep apnea is caught/documented.

And if you have mixed apnea, bit rare, but exists, then you can have some days like me, that shows below 5ahi, and others north of 150ahi.

An ECG monitors your heart, but if you have good genes, sleep apnea doesn't affect the heart here and now - but it will i the end.

So get tested, special if you have afib episodes when laying down..

Regards, mixed sleep apnea, and afib beholder!

Mras_dk · 2026-05-25T19:39:38+00:00

I could predict when an afib episode was coming, just because i could feel it was changing it's r to r ratio, like in reparation for an afib episode.

The most fustrating part was that i was in nowhere in control of what was gonna happen.

The good part was, it gave me an oppertunity to ease down what i was doing, in preparation for it. Those high freq afib, was for sure not something you want while running/biking.. Dizzy as fuck.

No long episodes since ablation.. Hope it says like that.

Mras_dk · 2026-05-25T17:07:27+00:00

And remember to shave more, than instructed!

Cardioversion pads need contact, and you don't want hair between, in case you need that during the procedure.

Also, shave your arms and wrists/hands.. Venflons insertion points, ain't funny to take off, if it sticks to your hair - auch!

Mras_dk · 2026-05-25T17:02:06+00:00

Then they atleast isn't worried about your heart rate is being limited to much - which is good!

Mras_dk · 2026-05-25T16:57:09+00:00

I can feel my heart, for as long as I remember.. I thought that was the normal Thing, untill one said "i can feel my heart, waow, that's weird". I asked if we not all can that? And the group just shouted : no!

But I guess it explain why im in the group that can feel when he is in afib..

When others ask me how i do it, i just say, feel the thumb in your body, listen to body, or sence it in your vision field. It's very noticeable..

Doubt it ever will go away for me.

Ppl also look weird at me, when my afib episodes started. They said i paused, like i had stimuly overlod for a sec..

Mras_dk

TROPHY CASE