AF Association
13,998 members16,926 posts

So what next?

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?

29 Replies
oldestnewest

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.

Reply

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.

Reply

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.

1 like
Reply

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

Reply

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

Reply

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

Reply

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.

Reply

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.

Reply

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.

Reply

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.

Reply

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

Reply

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?

Reply

It should reduce the burden.

Reply

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

Reply

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.

Reply

Have you found your root cause?

Reply

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.

2 likes
Reply

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

1 like
Reply

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.

2 likes
Reply

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.

1 like
Reply

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?

Reply

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

1 like
Reply

'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.

Reply

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.

Reply

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!

Reply

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.

Reply

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

Reply

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

Reply

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

Reply

You may also like...