Atrial Fibrillation (AFib) Support Group
Atrial fibrillation (AF or afib) is an abnormal heart rhythm (cardiac arrhythmia) which involves the two small, upper heart chambers (the atria). Heart beats in a normal heart begin after electricity generated in the atria by the sinoatrial node spread through the heart and cause contraction of the heart muscle and pumping of blood.
Hi afibers,
On the 17 Feb I went for a 5 hours ablation procedure to attempt to neutralise my ever so are afib.
A little bit of history first:
The first bout of afib I had (recorded) was in 2010. Before I was suffering from a flutter here and there. In 2011 I got an ablation for my flutter and my EP said that it will most likely take care of the afib in the same time (one would onset the other). Of course the next day coming out of hospital in May 2011 I had a 12 hours afib episode which put me right back on Sotalol.
Things were pretty under control with medication for 2 years (2013). I unfortunately had gotten pretty fat in those two years. One morning I woke up with a bunch of PVCs and PACs and it lasted for almost a year and a half. During that time, I had read that exercise and healthy life style often bring down those ectopic beats when they flare up.
So I got myself in shape and in the course of 2 years (2013-2015) I lost over 65 lbs from 262 to 183 (at my lowest). I was free of ectopic beats, I had lower my HBP medication, I even had my file close at my cardio has he had declared me in top shape. I was in good shape.
In June and July 2015 I was more tired than usual. I have had here and the nights with quite heavy bouts of ectopic beats and did not really understand why. Then one night in July, I woke up in afib and it lasted 6 hours. I was very surprised.so I proceeded to the ER and made sure I had this thing recorded. That month and the following I had 4 more bouts varying from 20 minutes to hours. Always going back in NSR by morning. (That is puzzling!)
The ectopic beats got worst from episodes 2 times a week to almost every nights for hours. I had learned by then that if I sit up when having heavy bouts, it wouldnt trigger my afib. Unfortunately, these bouts of ectopic beats got worst and became begiminy, couplets, triplets and whatever else is there. So I went and saw my Cardio and the only thing he could come up with was to that I had been on Sotalol to long and its effects were wearing off. So he said you need an ablation.
So I will skip the details, but 1 month later, there I was laying down for hours after getting a 5 hours long PVI ablation.
Results so far:
The first two weeks I was so happy. Next to no PVCs and/or PACs at night. It was like day and night. SO of course, I wanted to start exercising so I started slow like 20 min walk a day for a few days and then 40 min and I worked it up to 60 min in about 6 days. I did some fast walk and some light jogging within the same hour. I remarked that 2 weeks ago I started to have more ectopic beats especially after doing exercise.
Then around the sixth of March I had my first bad night. Lots of ectopic beats all night but not as strong and not as bad as before the procedure. So I immediately said to myself OUPS!! I did it too hard so time to slow down.
SO I stopped exercising for a week and fair enough so did the ectopic beats. Now the last two nights I had terrible nights and I think its at the point now where it is as bad as before the ablation. I woke up last night with a HR of 120-130 BPM but many PVCs and PACs. It seems like the ablation does not allow the afib but it still triggers the ectopic beats and fast rate (which would normally be the afib).
This tells me two things.
1. They slowed down the afib but did nothing the help the trigger.
2. If that is how its going to go down than its only a matter of time before the afib starts again.
I cannot help but to ask why are we getting ablations if the medical world doesnt do anything to find the root cause. Like what the heck is wrong with me? Is it Vagally induced? Stress from work? Adrenaline rush? Where does it come from and how can I fix it? Arent there medical tests that can be done? Many clues are there.its only at night.never in the day time.
Am I jumping the guns.is one month too early to tell? Shouldnt get better with time instead of worst.
And where is the Freaking medical support? My GP say Go to the Cardio, my Cardio say Go to the EP, the EP is 200 miles away and he doesnt want to talk to me.
This is so frustrating..sorry guys I need to get this off my chest. I honestly start to think this thing will only get worst and this ablation was a big FLOPmade only to treat the symptoms and not to find the cause.
Frustrated Scooby.
On the 17 Feb I went for a 5 hours ablation procedure to attempt to neutralise my ever so are afib.
A little bit of history first:
The first bout of afib I had (recorded) was in 2010. Before I was suffering from a flutter here and there. In 2011 I got an ablation for my flutter and my EP said that it will most likely take care of the afib in the same time (one would onset the other). Of course the next day coming out of hospital in May 2011 I had a 12 hours afib episode which put me right back on Sotalol.
Things were pretty under control with medication for 2 years (2013). I unfortunately had gotten pretty fat in those two years. One morning I woke up with a bunch of PVCs and PACs and it lasted for almost a year and a half. During that time, I had read that exercise and healthy life style often bring down those ectopic beats when they flare up.
So I got myself in shape and in the course of 2 years (2013-2015) I lost over 65 lbs from 262 to 183 (at my lowest). I was free of ectopic beats, I had lower my HBP medication, I even had my file close at my cardio has he had declared me in top shape. I was in good shape.
In June and July 2015 I was more tired than usual. I have had here and the nights with quite heavy bouts of ectopic beats and did not really understand why. Then one night in July, I woke up in afib and it lasted 6 hours. I was very surprised.so I proceeded to the ER and made sure I had this thing recorded. That month and the following I had 4 more bouts varying from 20 minutes to hours. Always going back in NSR by morning. (That is puzzling!)
The ectopic beats got worst from episodes 2 times a week to almost every nights for hours. I had learned by then that if I sit up when having heavy bouts, it wouldnt trigger my afib. Unfortunately, these bouts of ectopic beats got worst and became begiminy, couplets, triplets and whatever else is there. So I went and saw my Cardio and the only thing he could come up with was to that I had been on Sotalol to long and its effects were wearing off. So he said you need an ablation.
So I will skip the details, but 1 month later, there I was laying down for hours after getting a 5 hours long PVI ablation.
Results so far:
The first two weeks I was so happy. Next to no PVCs and/or PACs at night. It was like day and night. SO of course, I wanted to start exercising so I started slow like 20 min walk a day for a few days and then 40 min and I worked it up to 60 min in about 6 days. I did some fast walk and some light jogging within the same hour. I remarked that 2 weeks ago I started to have more ectopic beats especially after doing exercise.
Then around the sixth of March I had my first bad night. Lots of ectopic beats all night but not as strong and not as bad as before the procedure. So I immediately said to myself OUPS!! I did it too hard so time to slow down.
SO I stopped exercising for a week and fair enough so did the ectopic beats. Now the last two nights I had terrible nights and I think its at the point now where it is as bad as before the ablation. I woke up last night with a HR of 120-130 BPM but many PVCs and PACs. It seems like the ablation does not allow the afib but it still triggers the ectopic beats and fast rate (which would normally be the afib).
This tells me two things.
1. They slowed down the afib but did nothing the help the trigger.
2. If that is how its going to go down than its only a matter of time before the afib starts again.
I cannot help but to ask why are we getting ablations if the medical world doesnt do anything to find the root cause. Like what the heck is wrong with me? Is it Vagally induced? Stress from work? Adrenaline rush? Where does it come from and how can I fix it? Arent there medical tests that can be done? Many clues are there.its only at night.never in the day time.
Am I jumping the guns.is one month too early to tell? Shouldnt get better with time instead of worst.
And where is the Freaking medical support? My GP say Go to the Cardio, my Cardio say Go to the EP, the EP is 200 miles away and he doesnt want to talk to me.
This is so frustrating..sorry guys I need to get this off my chest. I honestly start to think this thing will only get worst and this ablation was a big FLOPmade only to treat the symptoms and not to find the cause.
Frustrated Scooby.
I've been looking into the association between sleep apnea and afib.
It truly looks to me as though it's borderline malpractice (at least bad medicine/economics) NOT to rule out (properly. Maybe even via polysomnography) sleep apnea before ever suggesting an ablation.
Sleep apnea seems to be the reason that lots of people fail cardioversion, drug therapy, AND catheter ablation.
I hope they find your cause, and get it under control.
I'm extremely frustrated with the medical community as well. We are poo-pooed, and told to "live with it." Or told ablation is a cure.. when it clearly is not. It seems likeablation is just another Porsche payment for the doctor. What a racket.. the first one doesn't work, so have afib patients coming back for two and three more expensive procedures... and even then.. the afib often returns.
I want to shake the medical community and say.. "Stop with the ablation research, and start looking for what CAUSES afib! Then get rid of the cause!"
This reminds me so much of peptic ulcers. Not too long ago, patients with peptic ulcers had part of their stomachs removed. That was the treatment. Or, like my dad, they were told to live with the hole in his stomach and drink lots of milk. He lived on antacids, and went through extremely painful bouts with his ulcer.
Of course, now they find that many peptic ulcers are caused by bacteria, and can be cured with anti biotics. Could afib be a simple cure too? How will we ever know unless the research goes towards finding the cause, rather than continuing to research methods of the barbaric burning and scarring of the heart!
I don't want band aids, I want this FIXED! I want to return to my very active lifestyle. I want to be able to travel without fear of having an episode in a third world country. I want to be able to go hiking again, and not worry about being on a mountain and being unable to hike back. I want to be able to go to Machu Picchu and not worry about the high altitude triggering a big episode.
I feel like afib is handcuffing me from the life I want to live. Just this week-- it caused me to miss two days of work... so now it's affecting my career. I don't want to risk a stroke, but I also don't want to risk a major brain bleed with a blood thinner. Why do I have to make that lose-lose decision?
I agree with David regarding sleep apenia. I am in the process of getting that corrected myself. I'm battling it out with the insurance companies over paying for a dental device to stop the apneas. It looks like I"m going to end up payin $1400 out of pocket.. but if it helps.. so be it.
My sleep doctor said just ONE apena during the night is enough to set off afib in those of us who are vulnerable. So, even if you have mild sleep apnea, it needs to be addressed.
So yeah, Scooby.. I don't blame you for feeling like you do.
I have an appointment with my Cardio again on Thursday morning and I will ask for a prescription to see sleep experts. Since these things happens mainly at night and after meal....sleep apnea could be a culprit. (definitely on the to do list).
I just want to point out that I read all your posts in here and have viewed all these researchers doing symposiums here and there. I read Dr. John Day stuff very attentively.
I did some homework and my frustration is mainly from having no results on how to stop the ectopic beats at night. I know they are the triggers (PACs) but I just cant find why.
I have tried the following:
Echo Cardio. - good
Blood test - good
Thyroid - good
Stress/Anxiety - I'm on Clonazepam
Obese - no
Electrolytes - normal
Diabetic - no
HBP - High Normal years ago but been treated for years
Alcohol - 0
Smoking - Never
Stress Test - no problems
What is there left? I requested that these tests be done. Not the doctors and most of them after reading the posts on this site.
How can a guy go from fat to skinny, from eating wrong to right, from little exercise to good shape and still get worst 10 fold in a span of 7 months and with an ablation on top of it....and STILL on Sotalol twice a day.
Hoooo man.....I tell you.
I will share a story that I relate to you....different, but similar. I had Epinepherine for a tooth extraction. It set me in afib. For weeks I struggled...in afib for 24 hrs. nsr for 12 hrs. 36 hrs afib, nrs for 24hrs. it went like this until my dr. said I needed ablation. We both knew it was the Epi. I got a second opinion. This Dr. said, my heart needed time to reset itself...he said, it would probably in another few weeks...a little over a month total. He was right, the episodes decreased in duration and onset. I was fine after that....
I would suggest that your day of exuberant exercise perhaps set you off for what you are now experiencing. You are still in the blanking period....give your heart a chance to heal. Stress, be it physical or emotional, is not your best friend right now.
Find a way to renew your Faith that this is going to work for you...it will take time and patience....and a huge dose of self discipline not to over do. ( I am a great over doer, so I know that is a challenge!!)
I was thinking about that after I commented.
Great post, Yogacat, and that quote above is really important.
Like it or not, they don't even start counting ablation successes until after some time (about 3 months) post-ablation. This is because they KNOW they've angered your heart by doing the ablation, so it's not uncommon for things to get worse before they get better.
So ... yeah ... I have to agree with yogacat: do the best you can to put this out of your mind, and return to your life. Set an alarm for three months, and then see how you're doing.
I know: easier said than done ;-)
There are a couple of things you left off your checklist though. Food allergies is one. Wheat/gluten is a definite trigger for me. Bloods tests also show I have sensitivities to dairy, oats and pepper.
Zinc deficiency is another. The following article says that a symptom of zinc deficiency can be afib. Just ran across this and my dr recently tested my zinc levels and prescribed high doses of zinc.
http://knowledgeofhealth.com/modern-day-zinc-deficiency-epidemic/
My AF never reoccurs on the night following an episode. I can drink, eat, sweat, whatever. Something is providing immunity, some blood level has dropped, or risen. It is very frustrating to have ablation as the only thing - fix the sympton but leave the cause (new Porsche models coming out in a few years...)
Ugh. Now I've vented. You're not alone.
Personally I've had two ablations. Major afib set in one month after the first ablation, so I went for a second. Its important to note that ablation is considered a treatment and not a cure (though it can be curative).
As of today, I still have PACs almost daily, but it doesn't affect my daily life the way afib used to. Its entirely possible that I could have enough fibrosis in my heart tissue to allow those afib pathways to reconnect, sending me into afib again. While my EP has told me of people having 3, 4 ablations, and even more, at some point you have to start worrying about your ticker becoming a charcoal briquette.
After ablation 3 (AB3) my DR suggested that I go to cardiac rehab. I was told to wait 2 full months before i start doing any exercise. Rehab lasted 3 months, 5 days a week.
Prior to AB3, I was exercising with my HR 125. This evidently set me in to AFIB...
In cardiac rehab, the closely monitor your HR and BP (every 3-5 minutes) while you are exercising. This is helpful as you begin to know your limits.
I am labeled 'exercise intolerant'. (While I don't exercise alot, I just don't like that label.) That means I can't train for a 5K, but it does mean that i can walk briskly. So i try to do at least 20 minutes 4 days a week, and about half the time do 40 minutes. I keep my pace ~ 3.2 mph. My HR stays about 95-100. Not the best work out, but one I can live with and know that it won't send me into AFIB.
I'm no doctor, but I think you engaged much too soon.... and you need to ramp over months, not days.
Robert
For me, my MAX HR should be ~100.