One year post ablation but still feeling ex... - AF Association

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One year post ablation but still feeling extreme lethargy

HI guys,

For years I have suffered lethargy, usually late afternoon/early evening, and I put it down to having A-FIb/A-Flutter and SVT without knowing, but after my ablation last May I felt amazing for the week after the ablation albeit sore, literally like a new man! I had energy, didn't feel tired at all. Then 7 days after the ablation I had a 30-second bout of AF which I expected. But after that, I felt back to my pre-ablation self where I felt a lack of energy and I wake up every morning with a headache like a hangover.

Since then I have partly become used to the tiredness, but I often feel like my life is being wasted where I choose to sleep instead of going out these days. I feel this is affecting both me and my family now, where I struggle to do things I want to do, but mustering the energy is another thing altogether.

Since the ablation, I am on 1.25mg Bisoprolol, 20mg Atorvstatin, 20mg Rivaroxaban.

This afternoon, I was playing with my children on the floor in the bedroom and I felt this wave of tiredness wash over me and I began to close my eyes whilst playing!! I then fell asleep on the floor and the kids then left me and I was asleep for a few minutes. When I woke, my heart rate was faster than normal around 77bpm and I felt like I had a hangover headache, and this urge to sleep again! After around half an hour it passed and I am ok again, but I am getting fed up with it.

I have had blood tests etc and thyroid, kidney, diabetes check etc all ok. So I am at a loss! I have tried taking Biocare Magnesium Taurate. I feel like the Dr's must think I am suffering from Munchausen Syndrome!

I am seeing my EP tomorrow morning, so will naturally bring this up, but wanted to see what you guys thought and might suggest that I could go to my EP with.

Thanks again for all the fab support, this is an amazing sit

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For me, lethargy can be a state of mind. I've proved it time after time, for example one afternoon I was feeling really drained and lay on the settee, the phone went and my husband went to answer it and came back to tell me that it was my cousin and him and his wife were coming over. I was fuming and asked why he hadn't told them I wasn't feeling well.

Anyway the short story is, they were at our house within minutes, we sat and chatted and I forgot all about feeling ill and was full of life. That's what my mind can do to me, could you be the same? I think the more you do the more alive you feel, certainly it's the case for me.

I'm not too sure about your episode of falling asleep on the floor just for a few minutes, it doesn't sound right. Do you think you could have passed out?

Please let us know what your EP says tomorrow.

Jean

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Hi Jean,

Yes you are right. Sometimes pushing yourself to do something you do not feel up to doing is hard, but I’ve been like this a while now, certainly before the ablation. I don’t pass out, it’s just pure exhaustion.

The other day I parked up at the supermarket and felt tired, then nodded off in the car before I went in. Woke up a short while later feeling like rubbish! It’s hard, because all the other tests have not shown anything wrong, but there clearly is.

I had testicular cancer last August too, but I’m in remission on that, and I have regular checks. I do think this is a cardiac related lethargy.

Let’s see what the EP says I guess...

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Something certainly doesn't sound right with your health. Make sure you tell your EP about your falling to sleep at odd times. I really hope he can come up with some answers for you. Could your heart rate be suddenly dropping too low, I wonder.

Good luck for tomorrow.

Jean

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Well, I had two TIA's previously diagnosed in 2010, which the root cause was never discovered. Although no one knew if I had AF then and did not know about it. But, they discovered I have a Bi-Cuspid Valve which is pretty good at the moment but is being monitored via annual checks.

I am getting pins and needles in the soles of my feet and have been for a number of years. When I was in the police it was put down to the equipment I carried and compressed discs, but more recently I had an MRI and there are no issues with the spine now, so the muscular-skeletal Dr requested I have a nerve conduction study, where they put large needles deep into your muscles and electrify them to see what reaction they get. I asked the Dr why he was sending me for this test and he said sometimes the sheathing around nerves can wear away or delaminate, but my understanding of this is that this is a symptom of MS, so I am hoping this is not the case. I think after this I am being referred to a neurologist depending on the results of the last test.

I cannot believe that at 42 years old I am falling apart! I still have so much I want to do, and whilst this won't stop me for most things, I know now I am held back to a degree by physical limitations.

I want to jump out of an aeroplane drive a racing car again and I know that now may not be possible.

I'm not sitting here feeling sorry for myself, because there are many who are in a far worse condition than me, and I am grateful for life, but I just didn't expect this many things to happen to me in such a short space of time.

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"getting pins and needles in the soles of my feet" and chronic tiredness sounds like you may have B12 deficiency. Have you tried to supplement with sublingual B12? Sometimes this deficiency is difficult to diagnose since serum B12 doesn't reflect its levels in body tissues and there is no universal consensus on normal range of B12.

Sublingual might have easier absorption compared to capsules. Also, you may ask your doctor to prescribe B12 shots and see if they help - this might be the best option.

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I haven’t tried any supplements yet, I was going to see the GP first to see what they say before taking anything prescribed or not. I saw the B12 spray that some take as a top up to their B12 injections. Not heard of sublingual B12 though...

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Yes please check b12 deficiency out.

My wife has pernicious anaemia and needs b12 injections once a month.

Consequences are not good if you ignore it.

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I’ll be getting an appointment to see the GP this week Rex.

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Narcolepsy? If it was cardiac related I would expect it to be a blackout or near blackout? It certainly doesn't sound right.

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Well I do joke about Narcolepsy, but these days I can fall asleep anywhere ha ha... Never really given it much thought.

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Firstly, I’m sorry you’ve had such a difficult time healthwise. It’s a lot. Other people may be worse off - which helps keep it in perspective - but you still need to work through the losses and adjust to how life is likely to look for you from now on. The good news is you’ve still got a life!

There are lots of possible reasons for your tiredness and it makes sense to investigate cardiac issues but I thought you’d be interest to know that the tiredness you describe sounds like narcolepsy, which I live with. It’s an overwhelming, crushing, undeniable drive for sleep. It’s typically treated with drugs to speed you up but that’s incompatible with arrhythmia so I manage without any interventions aside from 8-9 hours in bed every night and naps during the day when I feel that crushing tiredness coming on. Even 10 mins reclined in the car can be enough. A cold drink when I wake up clears that gross hungover feeling.

There’s plenty of info about narcolepsy on the internet but be cautious about seeking a formal diagnosis as it can have implications for driver licensing and insurance. Kind of ironic given your forum ID!

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Hey Talullah,

Well, after doing some reading last night yes it does sound like narcolepsy I’m suffering from given that all other tests etc have come back negative! One of the things I have found like you all, that having arrhythmia means so many meds’ are off the shelf now, so you end up adapting. Like you say, I’ve started to get used to the tiredness, but as you say I’ve never fallen asleep whilst driving, it’s usually when I’m stationary at home or watching tv etc. But I’m starting to just have a nap when I need it now.

My new job is safety critical and I had enough issues getting in with former AF! So having a narcoleptic diagnosis would be the end of my career. The good thing with my job is that despite working 24 hours a day, I work alone, so I can nap as many of colleagues do. So hopefully that will help. Often 15-20 mins is enough. But many nights I’m asleep before my kids have gone to bed! 😬

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Sounds like you’re in the perfect job to manage narcolepsy symptoms :) You may find that if you allow yourself to sleep more the symptoms will improve. If you’re like me, you’re very lucky to be able to drop off in to a deep sleep very quickly. I often wake in the night but am good at settling back in to sleep. And good rest is a great way to improve heart health. :)

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Yes, I am lol. As you say sometimes that little nap makes the world of difference. It’s the headache/hangover feeling I can’t stand. Just makes you want to shut your eyes even more.

I often wake in the night too, and haven’t slept well for years. I find getting back to sleep impossible sometimes!

Friday night I just sat on the sofa at 8pm and fell asleep and didn’t wake till 7 the next morning

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Re the headache/hangover: try giving yourself a good few minutes to lie still before getting up. Chances are you will have been in REM sleep and climbing back in to consciousness is a long way up after a short nap. A very cold glass of water helps me.

There's lots of info on the internet about stuff you can try to improve your sleep quality and duration.

I use an app on my ipad called sleepcycle. The mike listens in to my breathing and movements and in the morning it graphs how deeply I slept, any waking and snoring. It's a good way to see how you _actually_ slept versus how you think you slept.

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Yeah I do try to get up slowly, but sometimes it’s not possible. You just have to get going right away. I’ll definitely try the cold water and see where that gets me. The hungover feeling is the worst!

I’ll have a read up later and see what I can find out.

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Good luck and all the best! :)

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It really sounds as though your night time sleep isn’t refreshing. The fact that you were able to sleep 11 hours straight while sitting suggests that may be a clue. Perhaps you could try sleeping propped up on a wedge pillow and see if that helps? I sometimes feel slightly breathless laying flat, usually because I forgot to take my evening inhaler dose and that is just enough to disturb my sleep.

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Sorry, I should have explained better. I was not sitting I was lying on the sofa. But it feels like no matter how much sleep I get it’s never enough!

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I did think the same, but know absolutely nothing about narcolepsy. The B12 suggestion is a good one. Don't give up hope of an easy solution just yet.

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For me, tiredness can be a symptom of dehydration. I’m also less likely to fall asleep during the day since stopping Nebivolol.

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I’ll be the first to admit I don’t drink anywhere near enough! And I have read some that have upped their water intake and felt like new as a result, so I need to do that for sure!

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Have you had a sleep test? Being sleepy during the day and waking up with headaches can be symptoms of sleep apnea. I thought I was sleeping fine and I wasn’t tired but my EP sent me for asleep test and whilst most of my sleep was fine, when in REM sleep (when the body is basically paralyzed so you don’t act out your dreams) I had sleep apnea and my oxygen levels dropped. Higher CO2 levels lead to AF. I now have a CPAP and since my last ablation a month ago I’m feeling great. I also take magnesium and Vitamin B which helps too. I’m still on heart meds and will see what my doctor SA next week about coming off those.

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Hi Kaz,

I funnily enough did see a throat specialist last year and whilst I didn’t have a sleep study, she thinks that looking at my throat that I wasn’t a candidate for sleep apnoea. She said that as I have an over bite I’d benefit from a mouth guard where it makes my throat open more and stops me snoring! I’m not overweight and never have been but I snore like mad! Have done since my 20’s.

I’ve had sleep paralysis now a few times and it’s horrible! I’m just worried that getting a diagnosis will affect my job and potentially driving when it’s never affected either, just made it harder.

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I can understand your fears but your job won’t matter if you’re not around to do it. I had a really good chat with my EP and sleep consultant. I didn’t think I was a candidate for it either as I didn’t have any of the usual symptoms. I don’t know how common it is to only really have it in one stage of sleep. When I had my sleep study I didn’t sleep on my back at all, just both sides - a lot of people get positional apnea. My sleep consultant said that age and weight (although it can be a factor) don’t always play a part and that he treats a lot of kids and young people with sleep apnea. In fact our nephew who is 30 and super fit has recently been diagnosed and is now using a CPAP.

Because of all the dramas I had my EP insisted I had a sleep study and I hate to admit it but he could have been onto something. He spoke of a study in which scientists pumped CO2 into sheep and they went into AF and when they pumped oxygen back in the AF stopped. He said that by getting all the conditions right, it would help with my recovery from my last ablation. So far so good 🤞🏻

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Could it be the Bisoprolol? I was on the same dose as you and felt exhausted & as if I was ‘wading through treacle’. Could you ask for a change of beta blocker?

Pat x

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Yeah I’ve felt shattered on those, but I felt like that before I was on them too, so never really made the beta blocker attributable for the tiredness.

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Same to Bisoprolol even to the hangover at waking up...

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Bisoprolol - was on this for a month and took myself off it again, never felt so exhausted in my life and as it happens, it is a potential side effect.

Took myself off it and the extreme tiredness all but disappeared... it was to the point I was a danger behind the wheel and would fall asleep in front of the computer, two things that are absolutely necessary in my work, being self-employed!

Maybe time to review your meds?

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I’m seeing my EP this morning, so I’ll definitely discuss it with him today.

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Yes, the B12 sounds a very likely candidate. Get your GP to blood test your B12 levels. I suffer with Pernicious Anaemia and have a B12 Hydroxocobalamin injection every three months. Which livens me up when I get the jab every three months. Otherwise often extreme tiredness and lack are the main problems with Anaemia.

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My mum actually suffers from Pernicious Anaemia and has her injections like you. I would have though that would show up though wouldn’t it on a full blood test? I’ve had my fair share of those over the last couple of years! The one thing I’m usually low on is potassium.

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My mum too has PAnaemia.

No, unless B12 is requested it won’t be in full blood tests. I’m also a type1 insulin dependant diabetic had it for 43yrs and I know exactly how you feel. I sometimes get up in the mornings sit in the chair with my earl grey tea, and often nod off having only just got up, but I have noticed, when I’m busy my tiredness seems to hold off a bit; a vicious circle sometimes as I eat healthily and am only a little overweight which I put down to all the meds I’m on. Non smoker & no alcohol.

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I’m the same as you, I get up and within a couple of hours I’m yawning away! And as you say if you are active then it holds off the lethargy, but it’s so hard to fight at times! Well I’ll give the GP a call then and look at getting that test done.

I’m similar to you, I eat healthily and don’t drink and don’t smoke. I’m a tiny bit heavier than I’d like but I’m not overweight.

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Have you been tested for sleep apnea?

Also, I had terrible fatigue even when I was on the lowest dose of bisoprolol (0.65mg) I have been much better since stopping it

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I haven’t Mike, but as others have said the official diagnosis will mean my career is over and it’s getting that balance right. I’m thinking of coming off the beta blocker anyway and will discuss with the EP today when I see him.

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Bisoprolol or any beta blocker may be the culprit. After several years of exhaustion coming on at any time of the day, I got fed up and got a referral. Change of meds 2 years ago did the trick and I can keep up with & occasionally surpass my non-AF contemporaries.

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What were you on and what are you on now if you don’t mind me asking Zena?

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I was taking Bisoprolol and had to come off it because of extreme tiredness and it really wasn't helping my AF. I was taking Rivaroxaban and like you come the afternoon I was so tired I couldn't do anything but rest. I stopped taking the Rivaroxaban and have felt so much better. I am now able to face the afternoons without having to sit down and have a nap. I am still being sensible, my RF ablation was last October but I certainly have more energy. Fingers crossed you get to the bottom of what is causing your tiredness.

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Thank you. Some days can be debilitating, to the point where there is no such thing as too much sleep! So it would be nice to know what might be causing it.

As you know medication solves one issue and often brings others with it! So it’s deciding whether the benefits outweigh the risks I guess.

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Sorry to hear the problems you are wrestling with. Although I'm not suffering as badly as you with the sleep issue on a daily basis. I do often get very tired in the afternoons and sometimes to a point where I do need to sleep. This is variable but happens several days of the week. I'm putting my problems down to the 1.25mg Bisoprolol which robs me of sleep at night (awake 4-5 times nightly) but also its affect on my ability to exercise (walking) or carry out normal activities without becoming exhausted. I'm also unsure if blood pressure meds are affecting this afternoon 'tiredness' as my blood pressure often drops pretty low in the afternoon as the meds peak which I'm guessing adds to the faint/dizzy/washed out feeling I often get then. I'm aware that other heart rhythm problems may be going on that I'm not aware of may also affect this and explain some of the variability.

Although I'm horribly biased against my Bisoprolol (which I currently can't get off) I would suspect that it may well be causing quite a bit of your problem - it seems to be a drug that is tolerated well by some but not tolerated well at all by a significant proportion of people on this site.

Hope EP helps you get sorted out

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Bisoprolol, since I've been off it, what a difference.

I like to be active, walk 5 miles a day etc. When I was on Bisoprolol I had to kick myself in the rear end to get moving, no energy, tired, and miserable. It had my heart rate at 45 and I couldn't get it higher than 70 fast walking up a hill.

I had an ablation in Oct and stopped the Bisoprolol in Dec. I feel so much better. Haven't had any Afib since and heart rate back to normal.

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You shouldn't be on several meds this long post ablation. After my 1st ablation, the very next day I was 100%, w/o a single episode of AF for 17 months. Immediately went for a 2nd ablation, which I was 100% back to normal the very next day, and have not had a single episode of AF for almost a year now.

After 1st ablation, I was on blood thinner for 6 months then stopped. Only remained on a much lower dosage of metropolol (50mg). After 2nd one, I took myself off of blood thinner after 4 months, as I had a 24/7 heart monitoring watch at that point. Still on low dosage metropolol.

Sounds like your problems may be the meds or some other problem not related to AF or your heart.

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I'm not medically trained, but I wonder why are you on so many meds after the ablation? That's the first question I'd be asking.

Bisoprolol slows down your heart rate!

atorvastatin is for lowering cholesterol I think, do you also have high cholesterol ?

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Well I am on the Statins not because I have high cholesterol, but to prevent it getting high. I am not going to be taking the Bisoprolol after today after my consultation.

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You could ask to try nebivolol instead of bisoprolol. It doesn't seem to make one ne early so tired.

I would also query taking a statin. They do have side-effects, including preventing your body making CoQ10 which the body must have. If you have high LDL there are ways of bringing it down through diet. I believe eating oats rather than wheat helps (Try making your own muesli type cereal with lots of oats and other wholegrain cereals, but no wheat. Or eat porridge for breakfast instead)

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Yes, I am going to look at that if I can’t tolerate being off beta-blockers. Try another type and see how I get on. I also want to try and get off the statins, so will go for a blood test and see what my levels are and whether it’s feasible for me to come off them.

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So after seeing not the EP after all, but one of the registrars he said I am making good progress, and after looking at a few Kardia scans I provided, he said I am getting the odd bout of SVT, but the fact it’s only lasting seconds is a positive sign that the ablation worked. He said I am getting ventricular ectopics, but I am not worried about them to be honest. Then I explained about the lethargy and he said it may be the Bisoprolol, so told me to try not taking it and see how I get on off them for a few days.

He also said I should not be on blood thinners and told me to stop taking those also, but then I reminded him that I had two TIA (most likely because of a serious assault I suffered years ago and not cardiac related) and he went “oh no, sorry I did not realise, that changes that. Nope you’ll be on those for life i’m afraid”

So, I am due to go back in a year for an echo, then we’ll see where I am then! He said the risk of ablation to stop the ectopics were quite risky as they are hard to locate. He said if you get symptoms worsening at any time we won’t mess about we will just get you in for a touch up ablation.

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Hi Dangerousdriver, I empathize with your situation and will share a bit of my own experience and thoughts.

After my ablation in 2013, I was put on Metoprolol and basically left on it for years, with no really good reason. When I found this site around 8 months ago, I learned from Dr. Gupta that beta blockers aren't so great for vagally-mediated AF, so I explored going off the Toprol and did. **Huge** improvement in my energy level.

This was during the timeframe I've written about in my involvement here when episodes started up again, in 2017. I was put on Flecainide, first pill-in-pocket, then my EP & cardio wanted me to take it prophylactically, but I refused because of the miserable side effects, like depression, lethargy, & hallucinations.

Since then, I've done lots of research, which I've written about in other posts. My intention has been to explore what underlying health issues might possibly be contributing to AF. Plus, how could I possibly boost my overall health, which I knew would ultimately help my heart.

What I discovered and the subsequent changes I've made have had a profoundly positive impact on my health.

It's common that cardios & EPs do not look at AF holistically. It's just not in the training. I sought out a naturopath whose dad is a well-known integrative cardiologist, knowing that he'd be familiar with AF, in addition to his naturopath training and orientation. (I wrote about it in prior posts.)

Over time, AF depletes the heart cells of vital micronutrients that are key to the cell metabolic processes. Symptoms of this depletion? Fatigue, lethargy, fuzzy, thinking. I had it and have seen huge improvement since taking magnesium, CoQ10, taurine, & potassium.

The naturopath tested me for many possible underlying conditions, 2 of which can cause fatigue and lethargy - hormone imbalance & active Epstein Barr virus. I recommend that you get tested for EBV.

I only take Flecainide if I have an episode. My former acupuncturist prescribed an herbal kidney detox blend in order to help my system deal with the effects of Flecainide. I'm back on it after being out of it for a couple of weeks. What a big difference.

So for me, using as little of the meds as possible has helped. Supporting my entire system holistically through acupuncture, Chinese medicine, integrative cardiology, and seeing the naturopath have all given me a huge boost.

Of course, I worked with my EP/cardios, but it soon became clear to me, till I found my new cardio, that they were completely dismissive of looking at AF in any kind of holistic manner. This approach was not at all helpful, so I've explored these other approaches that have helped considerably.

There are layers of anxiety, depression, lethargy and fatigue that have been eliminated as a result of attending to these underlying issues through the use of some basic supplements.

Hope that might be helpful for you. Best wishes to you! I know it's not easy to deal with all this.

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