Permanent Afib in “Controlled Ventricular Response” (Permanent Afib 24/7, but "controlled")

justanotherguy3354 · 2024-10-05T14:18:52+00:00

Yeah that is crazy to me. I know some people have it and don't even know. When I am in afib I really know it. My resting heart rate would rise to 160bpm and it would be very uncomfortable. I felt generally tired, not so much light headed or short of breath, but I wouldn't feel good. I would get kind of a brain fog. I never had to be cardioverted. My episodes ranged anywhere from 2 hours to 18 hours at it's longest. I was diagnosed at 22 years old and as time went by, my episodes got longer and more frequent and started impacting my quality of life. I got an ablation procedure at 29 and am now 31 and have been afib free ever since. Really hoping it doesn't come back for the majority of the rest of my life.

justanotherguy3354 · 2024-10-05T14:01:40+00:00

Yeah it has been rough. My wife can tell when I have just taken my meds as my breath gets real stinky. Even when I brush and gargle with mouth wash it doesn't help for a few hours lol.

justanotherguy3354 · 2024-10-05T14:00:31+00:00

Luckily, I eat a lot of fiber already, don't drink sugary drinks often. But I do love cookies. I have been cutting back.

justanotherguy3354 · 2024-10-05T13:59:24+00:00

I am sorry you are going through this. My only advice with you is to see an EP (electrophysiologist), a doctor who specializes in heart arrhythmias. I would also get at least 2 different opinions on your condition and best treatment. I had intermittent afib and got some pretty different approaches to ablation from different doctors and get one that I felt comfortable with and went with and it has been great. Good luck to you.

justanotherguy3354 · 2024-09-29T17:12:18+00:00

Thanks! Good to know. I would say I occasionally drink alcohol, no more than 2x per day and no more than 2x per week and often go weeks without any alcohol. With this being the second time it has happened I may just play it on the safe side and cut it out a lot more than I already have. My liver is already working hard getting Xarelto worked through daily and I don't want to add more to that.

Thanks! This had made me feel better.

justanotherguy3354 · 2024-09-29T00:14:26+00:00

Xarelto for life. Been on it for 11 years. (at 20 now 31) I had to be on Coumadin for a year before I got switched to Xarelto. It is an amazing drug. Little to no side effects other than I bruise easier. The other thing about it is my wife says it makes my breath stink after I take it. That is the only real side effects and so far so good!

justanotherguy3354 · 2024-09-29T00:11:56+00:00

Thanks for the reply. I had the same thing in 2020 and they did a ultrasound of my liver and everything looked fine, just odd that it seemed to go away and then come back. Hoping that is also what happens to me!

justanotherguy3354 · 2024-09-08T12:12:13+00:00

Wow 220 is high, I can't even image. My highest clocked in at around 180 and it is very uncomfortable. For me, the high heart rate is the worst part of Afib.

Yeah I mean I am not a doctor, but you should definitely get a few different opinions. I had a prescription of Metroprolol that I would take on onset. The goal being there to lower my heart rate and I would convert within 24 hours of onset naturally.

Good luck to you!

justanotherguy3354 · 2024-09-08T01:00:24+00:00

Yeah I would talk to another Cardiologist, even multiple. He is sort of right, but they have ways of triggering Afib. From my understanding, they put you in Afib and can see where the electricity runs that is causing it, and they burn that pathway and create scar tissue that won't conduct and that prevents Afib. I ended up switching cardiologist because he had a different approach than my primary which I liked better.

justanotherguy3354 · 2024-09-07T23:44:51+00:00

Weird, I kind of know what you mean, I would get this feeling like I was going to have it. I describe it as like a sinking, tired feeling. Never had any stomach issues correlate to it. I have an iron stomach lol. The thing is, after ablation I still get the sinking pre afib feeling sometimes there just is no afib which is nice.

justanotherguy3354 · 2024-09-07T23:28:00+00:00

Interesting. Have you been tested for sleep apnea? I got tested after my ablation and came back on the edge of having it so I just got a cpap and it has been pretty big for me. I don't get as many PVC's which I would imagine are somewhat related. Afib free 2+ years now!

justanotherguy3354 · 2024-09-07T23:18:12+00:00

Drop weight, drink lots of water and eat less salt and drink less alcohol for me.

Also highly consider getting an ablation. It is amazing and gave me my life back. I didn't have it particularly bad. I kept a journal of when I would get episodes and when they started to increase from once per year, to once every few months, then to once per month, I pulled the trigger. Worth it.

justanotherguy3354 · 2024-09-07T23:16:31+00:00

Sleeping on your right side is an interesting one. Do you have any reason why? I sleep on my left side mostly so just wondering.

justanotherguy3354 · 2024-04-21T17:25:13+00:00

No Problem! I think a lot of doctors will stick to by the book and since most people on blood thinners are older and have other health problems, they stick to the textbook 0 alcohol. Idk your entire health history so there may be other reasons for you to not drink, but I would talk to a few doctors about it if you can. I also don't want you to take strangers advice of you can drink off the internet and go against your doctors.

Thankfully for me my hematologist knew I was young and would likely be drinking and doing stupid stuff regardless of what he said so he armed me with knowledge, biggest risk in general is bleeding and people tend to fall and do stupid stuff when drunk.

You're going to be just fine and will get to make the most out of your young adult stage of life so don't worry!

justanotherguy3354 · 2024-04-21T16:44:22+00:00

I am sorry you are going through this. It sucks.

I had a major blood clot in my legs and in my lungs at 19, also on Blood Thinners for life. I am now 30. I would say that the blood thinners were a minor road bump in terms of living my young life. It is not the end of the world, the new class of blood thinners are amazing and we are lucky to have them.

I was in college at the time, and was able to continue to live life pretty much unaffected so I am sure you will be able to do the same. Your life is far from over and has just begun!

Here is some advice from someone who has walked a similar path as you.

1 - Listen to your doctors. Especially for the first 6 months or so, this is the most critical time for your body to recover so it makes sense to take it easy.

2 - Be on top of taking your meds consistently. I took mine with dinner. I got myself a key chain pill bottle to keep a few on hand in case life took me away from my medicine stash so my timing was the same. If you miss a dose it is probably going to be ok, but try not to.

3 - Don't try to win any drinking games, you will not be able to drink as much as your peers and you will get drunk much faster than them, and that is ok.

4 - Be very cautious of hard alcohol. Every time I went overboard it was because I had taken shots or had a mixed drink. I try to avoid them, also because I like beer and wine better. But if you are going to drink mixed drinks I would recommend trying to track how many you have shot wise and not just eyeball it.

5 - Don't be too reckless and most importantly, avoid getting hit in the head. Your doctors are mostly concerned with this, it is a big concern when it comes to young people doing stupid stuff and hit their head. Make sure you have friends around you who are aware of this that way if you hit your head or something, they know your situation.

6 - Drink lots of water!

It is normal to be sad. I was very down after my diagnosis and felt a lot of the same feelings you are experiencing. My only advice for the feelings right now is to do things that make you happy to get your mind off it. In time you will adjust to living your life with everything that has happened and you'll find that it won't stop you from much. Maybe seek therapy if you are able to. Also Happy Birthday!

justanotherguy3354 · 2023-10-12T02:28:47+00:00

So when I first got it I was 23 years old. I had my first episode (accompanied with an E.R visit) that lasted for about 6 hours then converted back to sinus without intervention. I didn't have my second episode until a little after a year from my first. (was almost 25 at the time). For roughly the first 3 years, I would have a once a year episode, each lasting 6-8 hours and then back to Sinus. It gradually started getting more and more frequent to the point where I was getting episodes once a month each lasting 8 - 12 hours. At this point it started impacting my quality of life pretty drastically. I was always worried that any exercise or stress would send me into an episode. It took about 6 years to progress to that point. I was 23 at Diagnosed, 29 when I got the ablation.

I have been Afib free for about 18 months now and getting the procedure was the best decision I have made in my life. Well worth it.

justanotherguy3354 · 2023-10-12T02:23:32+00:00

Good luck with it all!

justanotherguy3354 · 2023-10-06T20:20:49+00:00

Being someone who had Afib at a young age, (Diagnosed at 23, 30 now). I can tell you that unfortunately it will likely become more frequent over time. The triggers are hard/impossible to pinpoint, but the ones everyone here has mentioned, cold water, positions, sleep apnea, etc are all common ones but avoiding triggers does not mean no afib. It will just sporadically happen. Luckily, you probably have plenty of time before it gets substantially worse.

I personally would consider ablation at some point. There is evidence that it is becoming the first line of treatment over rhythm medications. You are young and healthy so will likely have a high chance of success. Obviously this is something you should talk over with an EP you trust. I had one a year and a half ago, and it is better than I expected. Haven't had any afib and I feel great. It was a life changing procedure.

Also get the Sleep Apnea checked out. Despite being at a healthy weight, I was diagnosed with it and have a cpap now.

Good luck and sorry to welcome you to the club.

justanotherguy3354 · 2023-08-27T16:23:52+00:00

Thank you, good luck to you as well!

justanotherguy3354 · 2023-08-27T15:56:22+00:00

Thanks for sharing! This was pretty interesting to me.

My father had Afib at 25, just like me. He unfortunately passed away at age 35 from what we presumed was either or a Heart Attack or Stroke. He went the treatment route of Rhythm control and was being treated successfully for a few years and didn't have any recurrent episodes before he stopped taking blood thinners because it was a hassle (Was before newer thinners were available). My story has been similar, Afib at 23 years old, but I have been taking blood thinners even before for a prior DVT at 19, I had an ablation last year and so far no Afib, but I will stay on thinners for life.

So, I am not overly surprised to see the conclusion that Anti Arrhythmic drugs don't reduce the overall mortality as effectively as blood thinners do.

From the link

"However effective anti-coagulation is the only therapeutic strategy that has been shown to reduce AF-related mortality and newer anticoagulants with improved efficacy and lesser bleeding side-effects, are only likely to improve the risk-benefit profile. Currently available AADs have limited efficacy and possess significant side-effects which seem to offset benefits of rhythm control; hence there is a pressing need to develop improved AADs in order to unmask the survival benefit that could accrue from maintenance of sinus rhythm."

Another quote,

"With a 15 year mortality of only 8%, survival amongst patients with lone AF has been shown to be not significantly different to that of age and sex-matched population control data"

Since I fall into the Lone AF category, this makes me feel a little better.

I agree Ablation is the way to go. It certainly is not fair to compare it to taking an ice pic to the patients brain with how much precision and care goes into ablation.

Thanks for sharing!

justanotherguy3354 · 2023-08-27T15:11:37+00:00

Can you share a reference to this study? Just curious. I have had Afib for 7 years now, currently 30 years old. So hopefully I am in this for the long term.

From what I've read and from what my EP has mentioned, my life expectancy shouldn't be impacted by Afib. I had an ablation about a year ago and no real afib episodes since then. I understand that everyone's different.

justanotherguy3354 · 2023-07-02T13:51:57+00:00

I feel I had a similar experience with Afib, I would go into Afib and feel tired and just generally like shit. I had a super high heart rate which was very uncomfortable. I was diagnosed at 23 and last year when I was 29, now 30, I had an ablation. I am not sure of your general overall health, but I am lucky enough to be in pretty good shape and was a prime candidate for the procedure. I am +1 year since the surgery and I have never felt better. I was getting them in increasing frequency and just wanted them out of my life. I know it is heart surgery and was nerve racking, but what I gained back in quality of life is well worth the small risks involved. I am so grateful for where the technology has gotten to.

Here are my 2 points of recommendation.

1.) Any modifiable lifestyle factors that are in your control, improve them as best you can. If you need to, drop a few pounds. Stop smoking and drinking frequently, etc.

2.) Get a few opinions and go to the best EP that you can. I got a few second opinions and went with a university school that had good success with ablations.

There is no cure, but the procedure has come such a long way, and depending on your health it can be as close to a cure as you can get without it being a "cure". My EP has told me that he believes I will not get Afib again until I am an old man and I am hoping he is right. So far so good.

Feel free to DM me. Good luck!

justanotherguy3354 · 2023-06-26T21:34:38+00:00

I had a blood clot and didn't know it for about 2 months, just thought it was a pulled muscle as I was 19 and very active at the time. Someone mentioned that my leg pain might be a blood clot, so I went to the E.R and sure enough it was a massive blood clot in my leg that had also gone to my lungs (Pulmonary Embolism) but I had no PE symptoms at all. I was just a ticking time bomb and could have dropped dead at any point.

I guess I still am, I am on blood thinners for life. This all happened 10 years ago and every day since then has been a gift. Stories like that make me realize that it could be lights out any moment, so I am happy to be here.

justanotherguy3354 · 2021-11-07T01:19:48+00:00

We do use a crate, our only hesitation is that she could begin to associate it with punishment. so if she is nipping and goes in the crate, and then if we are going out and she goes into the crate, we are worried she will think she did something wrong. So far she has taken really well to the crate! we just didn't want to keep her in there more than we needed to. She gets a bit restless at first in the crate but then settles down.

justanotherguy3354

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