So what next?

[li17]

I've done five complete stress tests and ultrasound and have confirmed my heart's structure and function are all normal. I don't have any risk factor. All my afib happened when I was sleeping. Just got the 6th episode yesterday, woke up at 4am in afib. Needless to say that was so frustrated and desperate, since I've been doing everything I can - eat well, exercise daily, take supplements: magnesium, L-cartnitine, D-ribose, krill oil, eat bananas and lots of fruits.

I've also tried all triggers that people had ever mentioned but none of them do me any difference, including coffee, red wine and other booze, tea, soda, sweetener, barbecue, Chinese food with MSG, running, jumping, sleeping on left and right side, suddenly bending down or twisting body, gluten, wheat, etc.

I used to think mine was vagal afib, as it only happened when I was sleeping. But other than that, I didn't have problem bending down, stomach bloating, sleeping on left side or right side. I thought it might be triggered by slow heart rate, as I once noticed my heart rate dropped to about 50 one hour before onset. However, I noticed in the last episode that my heart rate was around 60 all the time before onset. So looks like low heart rate is not the problem either.

I did notice in my last episode, my O2 level dropped to 85% once about 50 minutes before my heart rate jumped from 57 to 90, then 15 minutes later it climbed to 125. So I guess that was triggered by sleep apnea. However, last night my O2 level was downed to 81% and I had 96 episodes of apnea that dropped O2 more than 4% while there were 20 minutes in total that the O2 level was below 90%, but I didn't have an episode but only some spikes.

Now I'm totally lost. Because the more I investigate, the more confusion I have. Before the last two episodes, I had gone three months without an episode, then got hit on March 2nd, then another one on March 29th. I used to hope by correcting any abnormalities in my body I can get rid of afib forever, but as more episodes happened, I'm gradually losing hope and feeling desperate. Being 37 years old only, this is worse than a death sentence.

​What can I do next?

[Vandalbragg]

Were you prescribed any medication as PIP for when your Afib kicks in? I’m 32 and feel you on being bummed. Stay strong, you don’t have any other choice but to keep living.

[li17 in reply to Vandalbragg]

Thanks for replying. Yes I have propranolol, Xanax, flecainide and Xarelto as PIP. But I didn’t take flecainide when I was in afib as I tried it once it didn’t made any difference. How do you cope? I’m thinking if I should head for ablation at this point. It’s so hard to live this condition. Praying for miracle.

[Vandalbragg in reply to li17]

Only you and your doctor can decide what will work for you. In the end, you can let this condition control you or you can get on with your life. I consider it a blessing in a way. A non deadly reminder that one day the ticker will stop (hopefully 40 years from now) and to enjoy life for every moment I have.

[li17 in reply to Vandalbragg]

Good attitude! I tried to think positively but yet can do it now. What treatment are you taking?

[Vandalbragg in reply to li17]

Pip flecainide. Doc told me if it starts up again to take it daily.

[li17 in reply to Vandalbragg]

How long have you been diagnosed and how often were your episodes?

[Vandalbragg in reply to li17]

Last December had first episode, lasted 3 hours and went away on its own. Got prescribed atenolol which did nothing for me. Had ectopics every night when I went to sleep. Had second bout of Afib 3 weeks ago. Lasted 3 hours and went away on its own. Doctor gave me flecainide because my Afib was not fast. Since then I’ve had occasional ectopic beats. Have periods where I’m light headed for hours. Chest aches frequently. Have never felt the “old normal” since December. Time to embrace the “new normal.” Both episodes started after I lied down to go to bed.

[li17 in reply to Vandalbragg]

Did you have your episodes while asleep or awake? I don’t even have any PAC or PVC. Don’t know what caused it. But I notice many people had panic attack or anxiety before afib.

[Vandalbragg in reply to li17]

So far, all awake. I have a lot of work stress and for about 10 years I drank energy drinks, coffee and Diet Coke daily. I think that’s what did me in.

[li17 in reply to Vandalbragg]

I also had extreme stress from work, plus I have a naive wife that always brings up trouble to me. But all my episodes happened when I was sleeping.

[azriverrat]

Do you have sleep apnea diagnosed and is it treated like with a cpap?

[li17 in reply to azriverrat]

Yes I did sleep study and found mild apnea. However when I monitor myself when sleeping, I found I had 96 times that O2 level dropped under 90%, with lowest as 81%. Not treated by CPAP yet as changing insurance. Would treating apnea cure afib?

[BobD Volunteer in reply to li17]

It should reduce the burden.

[azriverrat in reply to li17]

If you have sleep apnea that is a trigger yes a cpap should help.

[MarkS]

Presumably you're normal weight and don't have a thick neck, they're risk factors for sleep apnea. Otherwise you may just have lone AF. I desperately tried to find triggers for many years until accepting that there weren't any. AF is an inflammatory disease so in a lot (most?) cases there is no trigger. You do need to find your root cause however, it may be sleep apnea or it may be something else.

[li17 in reply to MarkS]

Have you found your root cause?

[MarkS in reply to li17]

Yes, mine were excessive exercise, a lot of stress and mild gum disease. All now sorted. I had an ablation which has worked. My parents both had AF so there was a genetic component though my brother has not had AF.

If you can sort out the inflammation factors then your chances of a successful ablation are greatly increased even if it doesn't cure the AF on its own.

[li17 in reply to MarkS]

Thanks! When did you have the ablation? Are you totally afib free now? How often was it before ablation?

[MarkS in reply to li17]

I had the ablation 8 years ago and am now totally AF free. Before the ablation it was 24 hours on (i.e. AF), 48 hours off as regular as clockwork for many years. Then the burden rose to about 75% and I decided it was time to have the ablation whilst I was still paroxysmal. I was still able to play (field) hockey and used to be overjoyed when I had AF on the Thu or Fri as I would then be AF free on the Sat! But even if I had AF I carried on but just stayed closer to the goal (I was a defender). I wouldn't say it had a major impact on my life, it was more of a nuisance.

[Asdfvv]

Since it happens while you sleep, it might be related to your thyroid. When we sleep, our bodies release more hormones. That is why sometimes we wake up feeling hot even when it is cold. And some people get palpitations only at rest. I think it has to do with poor circulation while lying down.

[li17 in reply to Asdfvv]

How can I find out? My free T4 was a bit higher than range in the blood work during my first episode, but all thyroid tests after that were normal. If the thyroid issue only happened when I was sleeping, how can I test for it?

[ncerna in reply to li17]

Go see an endocrinologist. They also sell supplements that help thyroid function.

[secondtry]

'What to try next':

Ask an Alternative Practitioner about taking CoQ10 (mine put me on that & Mg)

Cut out 80%+ of gluten

Use nasal strips at night

Develop a new relationship with wife (don't underestimate this, I had the same problem)

Big step up in dental hygiene (have you had a lot of fillings over the last 3 years)

Check with your medics about taking a higher dose of Flecainide (important to get stabilised on this buying you time to work on the other changes necessary; 100gms per day didn't do anything for me, middle dose of 200mgs/day stopped it dead)

All of the above, I have experienced and believe are key tools to keep AF at bay. Hope something useful there.

[li17 in reply to secondtry]

Good suggestions! Thank you! Would you think taking flecainide daily is better than as PIP? I’ve been refusing daily dose as don’t wanna on med every day and scared of the side effects.

[secondtry in reply to li17]

My cardiologist says daily stabilises better than PIP. I thought like you but followed his advice and he has been right so far (4 yrs AF free). The side effects of Flec are I have read largely if you have other heart issues but a lot less risk if you have Lone PAF.

What I would urge you to do is not to be complacent and continue as you have to improve your lifestyle, diet and supplements, as well as possibly daily Flec. Also I missed off my list the importance of simple regular x3 daily breathing exercises and Mindfulness/mediatation. Good luck!

[ncerna in reply to secondtry]

Flecainaide has dangerous side effects. So I wouldn't recommend taking it unless you have to. Maybe take it just for a few days until afib stabilizes, then try weaning off of it. It will make you really weak.

[ncerna]

There is a supplement called Vinpocetine. It not only helps reduce the chance of stroke, but improves blood circulation.

[secondtry in reply to ncerna]

Thanks ncerna very interesting. I will google it but do you have any personal experience you feel able to pass on?

[Asdfvv in reply to secondtry]

Yes. Fear God, acknowledge him in all things. And it will go well with you.