Afib triggered at onset of sleep; what to do?

Posted by rdstoll @rdstoll, May 3, 2023

I was diagnosed with Afib May of 2022 and had ablation in October 2022. Five months went by without a single afib episode but in the last month it has come roaring back as I'm getting it 3-4 times a week now.

My afib is almost always associated with sleep. The second my head hits the pillow, afib starts, and lasts about 4-5 hours. I have sleep apnea and have a CPAP. But the afib is getting triggered before I'm even sleeping.

Am on verapamil for afib and atorvastatin to control higher cholesterol. In preparing for ablation, all my blood panels were in great shape and scans of my heart came back perfect.

Am 49 and am worried that another ablation won't help and that I'll have to live with this forever.

Does anyone else have sleep-induced afib and know ways to stop it?

Interested in more discussions like this? Go to the Heart Rhythm Conditions Support Group.

@windyshores

Are you on a blood thinner?

When I have afib it is like a big fish flopping around in my chest, my heart rate goes to 180+, short of breath, chest and arm pain, woozy. My blood pressure is low so diltiazem needs to be monitored in case bp goes too low (I watch the hospital monitors myself). Last time they put me in ICU due to bp issues with meds. It lasted 7 hours so they did an echocardiogram to make sure no clots (and gave me a shot of Lovenox.

I read a study that supported short term anticoagulation. I always ask for that but it isn't in practice yet. With my first episode in 2015 the hospital docs told me to take aspirin for a month but that is no longer recommended as effective, I was told.

I have slowly identified triggers and believe I have both adrenal and vagal triggers. I just went two years without an episode. It is also possible that some cancer drugs I was on started all this, and I am off now.

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Very scary for you! It’s the abnormal rhythm that bothers me most. I can feel it and see the sign wave on the pulse odometer go crazy erratic.

I have refused blood thinners because I’m always the person that gets the rare side effects from meds.

I also had my first afib episode in 2015. Thought I was having a heart attack and went to the ER. I was having trouble with constant food aspiration (neurological) and virtually stopped eating. I lost 25 pounds in a month and went into afib. Didn’t have afib again until 2021 within days of starting Kisqali and have had issues ever since. I also have low BP and HR from two cancer meds. That’s concerning too but I refused meds to raise them. I took the Multaq for afib in 2015 and had all the symptoms of a heart attack for 3 days straight until I stopped taking it. I was told that shouldn’t happen. Well, it did. I’m convinced I would have had a heart attack if I had kept taking it. I should have stopped day one.

If you knew all the scary and unusual reactions I’ve had to meds you’d understand why I’m afraid to take new ones. I am a poor metabolizer on several key enzymes needed to metabolize meds and that can make them toxic to me.

I’m allergic to aspirin anyway.

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@californiazebra

Very scary for you! It’s the abnormal rhythm that bothers me most. I can feel it and see the sign wave on the pulse odometer go crazy erratic.

I have refused blood thinners because I’m always the person that gets the rare side effects from meds.

I also had my first afib episode in 2015. Thought I was having a heart attack and went to the ER. I was having trouble with constant food aspiration (neurological) and virtually stopped eating. I lost 25 pounds in a month and went into afib. Didn’t have afib again until 2021 within days of starting Kisqali and have had issues ever since. I also have low BP and HR from two cancer meds. That’s concerning too but I refused meds to raise them. I took the Multaq for afib in 2015 and had all the symptoms of a heart attack for 3 days straight until I stopped taking it. I was told that shouldn’t happen. Well, it did. I’m convinced I would have had a heart attack if I had kept taking it. I should have stopped day one.

If you knew all the scary and unusual reactions I’ve had to meds you’d understand why I’m afraid to take new ones. I am a poor metabolizer on several key enzymes needed to metabolize meds and that can make them toxic to me.

I’m allergic to aspirin anyway.

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I am also sensitive to meds. I do better with TEVA sometimes.

I declined blood thinners with much pressure over the years and changed doctors.

Interesting that a cancer drug started it for you. I swear letrozole started afib for me and when I went off, the interval because longer and the one episode I have had was mild and stopped in 10 minutes.

Kisquali and letrozole are entirely different but it is quite a coincidence.

Hope you find an answer!

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@windyshores

I am also sensitive to meds. I do better with TEVA sometimes.

I declined blood thinners with much pressure over the years and changed doctors.

Interesting that a cancer drug started it for you. I swear letrozole started afib for me and when I went off, the interval because longer and the one episode I have had was mild and stopped in 10 minutes.

Kisquali and letrozole are entirely different but it is quite a coincidence.

Hope you find an answer!

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@windyshores I'm so glad you mentioned letrozole. You're going to love this. I started taking Kisqali and Letrozole the same day over 2 years ago. I assumed it was the Kisqali that caused the afib only because I also had the dangerous heart rhythm that only 4% of the people get with Kisqali (can cause sudden death - yikes) so they had to stop the 600 mg, wait for my heart rhythm to go back to normal and then start me on 400 mg. So I assumed the remaining afib issues were due to Kisqali. Maybe it's the letrozole that triggered the afib now that I hear your story. In any case, I'm on both meds long term so it doesn't really matter. I'm not changing any meds cause they seem to be working and the devil you know...

I looked up TEVA and it looks like it's a pharmaceutical company. So when you say you do better with TEVA, do you mean any meds they make or what specific meds did you mean?

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@californiazebra

@windyshores I'm so glad you mentioned letrozole. You're going to love this. I started taking Kisqali and Letrozole the same day over 2 years ago. I assumed it was the Kisqali that caused the afib only because I also had the dangerous heart rhythm that only 4% of the people get with Kisqali (can cause sudden death - yikes) so they had to stop the 600 mg, wait for my heart rhythm to go back to normal and then start me on 400 mg. So I assumed the remaining afib issues were due to Kisqali. Maybe it's the letrozole that triggered the afib now that I hear your story. In any case, I'm on both meds long term so it doesn't really matter. I'm not changing any meds cause they seem to be working and the devil you know...

I looked up TEVA and it looks like it's a pharmaceutical company. So when you say you do better with TEVA, do you mean any meds they make or what specific meds did you mean?

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Actually I took brand name letrozole (Femara) because I reacted to fillers in the generics, and TEVA doesn't make it. Ironically, the last month, I discovered that the Accord generic was very tolerable so I could have saved a whole lot of money!

I am stunned that you are also taking letrozole and having afib episodes. I have ultimately connected the episodes to GI issues, but maybe the hormonal changes were the real culprit.

Yes some of us have to stick with them. I admire your perseverance but know the alternative isn't great either. Good luck!

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@windyshores

I also get afib when going to sleep or an hour or so into sleep. I only get afib once a year or so and just went two years before having an episode this week. My afib is dramatic with heart rate around 180, short of breath, chest pain, and I end up in ambulance.

I have done the following things to address afib, but mine is paroxysmal and infrequent so may not apply:

Potassium in the am via low sodium V-8
Magnesium at bedtime
Never eating after 5 or 6 pm, stay upright after eating

Believe it or not, I stopped the episode this week with Gas-X! I usually pop a diltiazem to slow heart rate and aspirin. I burped a lot and the afib stopped. My theory now is that GI gas presses on my heart when lying down. No doc involved at this point. No daily meds. Feel fortunate.

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Thank you for your post. I had also decided my paroxysmal a-fib is always because of poor digestion. None of my medical team have agreed with me but none have disagreed with me either. I have lately been tapering off Metoprolol due to low bp and have had more-often but milder episodes of a-fib. I’m not sure of a connection.

Thank goodness for Gas-X and magnesium.

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@windyshores

Are you on a blood thinner?

When I have afib it is like a big fish flopping around in my chest, my heart rate goes to 180+, short of breath, chest and arm pain, woozy. My blood pressure is low so diltiazem needs to be monitored in case bp goes too low (I watch the hospital monitors myself). Last time they put me in ICU due to bp issues with meds. It lasted 7 hours so they did an echocardiogram to make sure no clots (and gave me a shot of Lovenox.

I read a study that supported short term anticoagulation. I always ask for that but it isn't in practice yet. With my first episode in 2015 the hospital docs told me to take aspirin for a month but that is no longer recommended as effective, I was told.

I have slowly identified triggers and believe I have both adrenal and vagal triggers. I just went two years without an episode. It is also possible that some cancer drugs I was on started all this, and I am off now.

Jump to this post

What did ypu find were your triggers? I have vagal ....at least that is my diagnosis.

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You have a progressive heart condition that may have advanced. Your heart is changing with time, which means new routes for the spurious electrical signals. Those can be fixed with a second, even a third ablation. Some people have five and six ablations....BUT....the key is to pick the right electrophysiologist to do it. You want a very busy, high-demand, EP whom you may have to wait to see for a few months, but it will be worth it.

I can't stress enough that you need the best EP around, even if you have to fly to get the treatment. I have read of people being ablated by the chief of electrophysiology teaching other EPs, but whose own track records are terrible. You want to find one of the top 20 EPs in the country and enlist that person's advice and aid.

Should you have a second ablation? Yes, absolutely, YES! But make darned good 'n sure the person doing it has a plan, knows where the problem lies with you and your first failure, and then place yourself in that person's hands. If that doesn't work, go for at least one other round of ablation. Almost everyone finds that their touch-up second ablation works. If you have the funds, try Dr. Andrea Natale at the TCAI in Austin, TX.

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@gloaming

You have a progressive heart condition that may have advanced. Your heart is changing with time, which means new routes for the spurious electrical signals. Those can be fixed with a second, even a third ablation. Some people have five and six ablations....BUT....the key is to pick the right electrophysiologist to do it. You want a very busy, high-demand, EP whom you may have to wait to see for a few months, but it will be worth it.

I can't stress enough that you need the best EP around, even if you have to fly to get the treatment. I have read of people being ablated by the chief of electrophysiology teaching other EPs, but whose own track records are terrible. You want to find one of the top 20 EPs in the country and enlist that person's advice and aid.

Should you have a second ablation? Yes, absolutely, YES! But make darned good 'n sure the person doing it has a plan, knows where the problem lies with you and your first failure, and then place yourself in that person's hands. If that doesn't work, go for at least one other round of ablation. Almost everyone finds that their touch-up second ablation works. If you have the funds, try Dr. Andrea Natale at the TCAI in Austin, TX.

Jump to this post

Thanks so much for this reply. I’ve reached out to Mayo in preparation for a second ablation to see if I can get a good EP. It’s hard to find who the “best” are because all the ranking I find on the internet seem compromised in some way shape or form. I like the EP who did my first one but wasn’t keen with his surprise that I’m getting afib again five months later.

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My EP was the top cardiovascular trainee in all of Canada in 2002. He has gone on to be an extremely busy, crusty, and admired wizard whom the nurses don't particularly like all that much, but they assured me he was the best there is if you want your heart fixed. He won't pat your hand and tell you, 'There, there...", and he is brusque, but he listens, and he is forthright about his failure rate up front...35%. Second ablations improve to 80% likelihood of success. He did my first (the index ablation), and then did my second. He called me to chat to ask what I wanted to do. We talked for at least 10 minutes and shared information. I agreed that he should try again, and this one worked.

Any EP who tells you her success rate is above 80% on the first try is either an outlier or a damned liar. If she is the former, do gratefully agree to a second touch-up, which does have the higher success rate empirically.

Whether five months or five years, your first successful ablation is time-limited. It's a progressive disorder, and you'll be back in the OR when the time comes. But, living the intervals off meds and with a proper heart rhythm is priceless. Go get that second ablation, even if it ends up just being a touch-up. We thought that was what was needed for me, but Dr. Novak ended up re-doing three of the four pulmonary vein ostia. When he was done the third, my heart instantly reverted to NSR while they watched. He didn't even have to shock my heart back into proper rhythm, which is standard procedure for almost all catheter ablation patients. It instantly began to beat properly. How wonderful is that!?

My advice is to go back to the first if that person is truly skilled, not just likeable. Likeable won't fix you. But do pin that person down as to what they intend to do that might be more robust this time. Maybe, as it was in my case, the procedure is to simply re-ablate the tissue and to hope that the heart restores its rhythm once and for all. No fancy-schmancy other procedures or ideas needed. Just tidy up what was done the first time.

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You may have another pathway that is triggered with slow heart rate. needs further workup possibly more ablation. if rate is controlled, rec sleep study as well as cardiology, check bytes.

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