What are the positive steps you take to man... - AF Association

AF Association

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What are the positive steps you take to manage your AF?

Guitar335
Guitar335

Just wondering what positive active steps we all take to manage our AF, to see what we can learn from each other.

For me its-

Minimal/No alcohol

A de-stressing hour of walking each day

A good 7 to 8 hours sleep each night

Keeping hydrated

Daily magnesium tablet

Keeping my weight down

That makes me sound like Im a saint...I don't succeed every day thats for sure :-)

47 Replies

One thing that very few seem to question is; is my medication correct for me?

Too many accept that their GP/Cardio have got it right, when they have not. In many cases they are treating you/I the same as Mr& Mrs + other genders/whatever who live up the road, because if worked for them. As we all tend to have different levels of Afib, that cannot be right.

After all said and done, you would hardly stick a tourniquet on a cut finger when a plaster will do. My point on that is; the medics in general seem to think medication that takes the HR below the medically acknowledged low of 60 bpm for the Afibbers is ok! Not only that, they are content to leave it there, which imo is not ok unless you have always had a low HR or that there are extenuating circumstances. They should imo be striving to get us back to the minimum of 60 bpm - nobody seems to query it Or their medication ?

CloudRunner
CloudRunner in reply to john6

Yes, I have experienced a bit of this.

At my first appointment with the cardiologist he was surprised that I had been put on warfarin as my Chad score was 0. I stayed on it as he booked me in for a CV

At the 6 month check up, after my first ablation, the EP was somewhat irritated to find that I was still taking Flec’ and bisoprolol. I pointed about that neither he nor anybody else had told me to stop. With a hint of exasperation he told me that the ablation was meant to replace the drugs and how was he supposed to know what was, or wasn’t working.

I was more than happy to stop as the drugs didn’t seem to be doing anything positive, made me feel unwell and sent me into syncop on a regular basis.

There seem to be quite a lot of people posting on here who have had an ablation but are still on anti-AF drugs. I wonder if those ablations are counted as successful or failures?

KMRobbo
KMRobbo in reply to CloudRunner

My EP asked me to drop the flecainide two to 3 weeks before my post ablation follow up, I presumed so he could see if I went back into AFib without the flecainide.However he kept me on the ditiazem rate control (again I assume just in case I did go back into Afib!))

Best wishes

hayrisdnet
hayrisdnet in reply to john6

My story is like yours. Planning ablation in a couple of months

john6
john6 in reply to hayrisdnet

I had a telephone consultation with the Cardiologist who is overseeing me last Thursday. He is ready to put me down for one but is happy to go along with my thoughts on hanging it out as long as possible, I guess I am hoping that a better way is found sometime (hopefully early) in the future. He did say as many others on here have, that the ratio of success is only around 7 out of 10 and that he could see my reasoning in among other aspects of our conversation for stretching it out. However, if my condition worsens I am to get back to him immediately.

Whilst that might sound a bit pompous from me, I accept that it does not make me right. Basically, you have to go with what you see as right and I wish all the good luck in the world - please keep us updated on your experience/progress.

My take on this.

I think Guitar has much of it nailed.

John - I accept your point about a HR of 60. However here's where we are all different. If I hit 80 at rest (well within the ideal) I know something is coming my way. I feel my best at 50 - 55 (which I know is low).

My only med now is flec which won't lower my HR (as far as I'm aware). 60 is ok but 55 is perfect for me. Once I hit 90 I do know what's going to happen - I feel it too.

These are resting rates. My ideal is 55 - but of course we are all different.

Paul

john6
john6 in reply to Paulbounce

Hi Paul, that is why I put " Or there are extenuating circumstances". Most of my life my resting HR was 72 bpm, for the medics to drop it down to (at one stage) 44bpm is a very big drop.

One would think that the maximum low they should be looking at in the 1st instance is 60 bpm, to then start work from there ie +/- the rate from there, and not just to say; take your tablets and not questioning as to how you are getting on with what is a big change in your life. When I was initially getting a HR of 44 bpm it felt great, however, it did bring problems later on which they were not picking up on.

Paulbounce
Paulbounce in reply to john6

Sure John - I understand. 72 to 44 is a big drop ! To big for my liking.

You wrote

"and not just to say; take your tablets and not questioning as to how you are getting on with what is a big change in your life"

I agree.

Paul

Tomred
Tomred in reply to john6

When i was put on meds the ep told me not to let my pulse go below 55

john6
john6 in reply to Tomred

Judging by the comments on the forum in general, there seems to be many who are below the figure you mention. Your EP would seem to be a rarity, although imo in the right direction.

Tomred
Tomred in reply to john6

Ep told me at 57 that i was young to have afib my resting pulse varies but mostly around 68 I'm on multaq 400 twice per day and 1.25 mg bisop

john6
john6 in reply to Tomred

Is that what your pulse is now or before you had Afib?

Tomred
Tomred in reply to john6

That's my pulse rate now and just checked its sitting between 63-65

Looks like you are doing a pretty good job to me. If medication/treatment is keeping AF in check, leave well alone. We are not medically trained therefore should not try to influence you to make any changes without proper medical advice. Maybe try some deep breathing exercises as this will help control stress too. Well done for making a great start......

Hi Guitar :-) I do all of the above but for me you have missed out one of the most important things, eating a good diet based on mainly vegetables/nuts/pulses/fruit/grains/fish/ olive oil/eggs and just a little meat and dairy.

Avoid additive, refined sugar, processed food . The less steps from earth to table the better so homegrown vegetables and fruit are great . I only have a small garden but manage to grow a lot of fruit and vegetables in raised beds . I also make my own bread and use frozen fruit in the winter .

FlapJack
FlapJack in reply to doodle68

It did need some sensible female input......😉

irene75359
irene75359 in reply to doodle68

Oh I like that - less steps....!

You are doing very similar to me. I also do yoga once a week and another movement modality called Feldenkrais. I meditate once a day. I changed to a mostly plant based diet and eat almost no processed food aside from high quality dark chocolate -two squares a day -and sheep's milk ice-cream. I drink keffir water to keep my microbiomes in good order. I'm really looking into nutrition as a way towards general health benefit. My biggest challenge is stress -I get wound up or push myself too hard -my AF will come on either that day or a couple of days later. Too much cortisol or adrenaline, and I'm off. I'm still working to manage that better. Between episodes my life is better than it was before. I try the focus on that.

secondtry
secondtry in reply to Singwell

I am almost positive stress is a big player in AF. At the start my Naturopath said my cortisol was very high. I was very lucky in that I could reduce stress in all areas which of course includes changing yourself as well as others & circumstances. Persistence pays.

Guitar335
Guitar335 in reply to secondtry

That’s really interesting. I think I’m bound to have high cortisol but have never got tested Thank u

dunestar
dunestar in reply to Singwell

Oh my goodness Singwell! You know about Feldenkrais. Isn't it wonderful? I have a good friend who has been a Feldenkrais practitioner for about 30 years. His burden is that he loves his work but it's such an uphill task to raise awareness in the UK of its benefits. This wonderful approach deserves much more recognition and support.

RonSym
RonSym in reply to dunestar

I already do Pilates and Tai Chi. Does Feldenkrais give any additional benefits?

Singwell
Singwell in reply to RonSym

Difficult to explain. Tai Chi is excellent in my experience as it involves slow, controlled meditative movements. Of the two, Feldenkrais is more similar in that respect to Tai Chi except there's no sequence of moves. Check it out on the web - it's most like the Alexander Technique in approach but I prefer Feldenkrais as it's more fluid and I find the practitioners less precious.

dunestar
dunestar in reply to RonSym

There's a big element in Feldenkrais of mindfulness, of really tuning in to how you are moving your body. So as Singwell says it's more like Tai Chi than Pilates in that respect. My friend describes it as giving you a foundation in good movement, so that you can move freely and safely in all your activities whether just going about your daily life or sports, dancing, playing a musical instrument etc. As Singwell says it's also very calming.

Singwell
Singwell in reply to dunestar

Quite a lot of musicians do it. I've known about it for years and started doing it regularly when I broke my arm 4 years ago. I knew I was in danger of losing my piano skills. Since lockdown my amazing Feldenkrais teacher has been giving me ATM sessions by Zoom and I'm really benefitting. It's not just about flexibility is it? It seems to reach you in other ways so that you can relax more deeply. Keeps my nagging sciatica at bay too.

Maybe 1) eat lighter evening meal and earlier. 2) minimise processed food 3) no staying up late to watch violent TV dramas (as the contrast of raised HB followed immediately by deep sleep can cause AF for those of us vagally mediated).

dunestar
dunestar in reply to secondtry

I would second this. I changed my main meal from evening to lunch time and it's made a big difference. I don't eat anything after 6 - 6.30pm. I have to be careful about what I watch on the telly before bed. I am prone to bad dreams.

FODMAP diet, losing weight, treating GERD (reflux), preemptive vagal maneuvers and deep breathing, staying hydrated, regular exercise but in moderation.

dunestar
dunestar in reply to mjames1

Can you say a bit more about vagal manouevres or point me in the direction of where I can read about it. Thanks.

mjames1
mjames1 in reply to dunestar

Hi Dunestar, I have only been doing the vagal manuevers for a couple of months and wanted to wait a bit to see how they worked over a longer period of time before posting in more detail. So keep that in mind and also that what works for Jack may not work for Jill. And of course, check with your doctor to make sure that they give you the green light.

As a brief background. Starting in my 40's, afib episodes every seven years. Then every 2-3 years in my 60's. Then 1-4 episodes a year in my early 70's. Three years ago I started having SVT episodes lasting from 30 seconds to ten minutes. That changed to aflutter the past couple of years. Aflutter episodes tend to last between 30 seconds and seven minutes. My aflutter episodes range from once a month to three times a day, with the mean probably around twice a week. I've also had persistent PACs for the last three years, usually between 2 and 10 per minute, which translates to having over 10,000 PACs in a 24 hour period some days!

From reading and observation, I have come to believe that my PACs trigger my aflutter and that my aflutter can also trigger my afib at times. In fact, I have captured this transition on a 30 second Kardia rhythm strip. The other major aflutter trigger is digestion, and most episodes tend to come after meals.

The silver lining is that I can feel the indigestion as a change of pressure after certain meals and after awhile I could pretty much predict an aflutter episode minutes in advance.

Lately, when I feel this pressure, I do a type of vagal manuever which consists of blowing out hard through pursed lips while contracting my stomach and pelvic area. I might do this for a few minutes intermixing it with some deep breathing between. The sound is like blowing a balloon hard with some air escaping from my closed lips.

For the past couple of months this has stopped my aflutter from occurring except for one episode after a big meal with a beer. (No beers since lol). The other interesting side effect is that while I still probably have a few PACs, there are probably down to under 10 a day versus over 10,000.

In addition, I put myself on the FODMAP diet which has helped my digestion so I don't feel the pressure as much. Before I was on the FODMAP diet, I had to intervene with the vagals several times a day. With FODMAP, maybe once a day or every other day.

I don't have any references for my specific approach, but you can google a mix of the following -- vagal, afib, PACs, Parasympathetic and sympathetic nervous system.

Hope this is helpful, and again, just one man's story. I don't consider this a cure, but knock on wood, things have been good lately.

Jim

dunestar
dunestar in reply to mjames1

Thanks so much Jim for taking the time to explain. I'm probably getting ahead of myself as I've yet to be properly diagnosed. A 24 holter monitor picked up something going on. I've got an appointment in March to see the cardiologist. I'll definitely mention whether he thinks vagal manoeuvres might help.

Not for all I know , but the major thing I did to manage my Afib, was have an ablation.

Major things Pre Ablation :

Sleep and more sleep. ( I was always a bad sleeper in as much as I never really wanted to go to sleep as there was always something I wanted or had to do). It also gives a better mood and it seems to help with the BP.

Exercise (it promotes a better more positive mood , helps lower the BP especially right after it, and helps keep the weight off!)

Keep weight in check

My routine (as well as my reaction to stress) is similar to singwell’s, including the Feldenkrais. I’ve had one ablation, which reduced episodes but did not cut them out, and I eventually had to go on flecainide, now at 200mg/day. My AF first occurred with a stroke, so I am also on apixaban. Mostly plant-based, no processed food or added sugar, no cow dairy, no alcohol, only decaf coffee. I keep gluten-free and take daily magnesium and DHA-heavy fish oil. I try to keep my weight down. My AF is triggered by vigorous exercise, but I do walk and bounce on a mini-trampoline every day.

This is per my doctor, who is also trained in functional medicine. In addition, I have a little machine I clamp to my ear an hour a day that provides vagal nerve stimulation (tVNS). It’s strange to see it all listed out, as it looks like so much, but I don’t miss much of what I’ve forgone.

Vix02
Vix02 in reply to Ablation627

Interested to hear more about the tVNS as my AFIB is definitely vagal induced

Ablation627
Ablation627 in reply to Vix02

The only place in the US I could find to get such a device was through a doctor in Phoenix Arizona. There is now a wellness version that will only give you stimulation for five minutes at a time, abailable to all, but mine is considered a class 2 medical device and therefore you have to get it through a doctor. If you are in the UK or Europe, you have other options. I’m not 100% sure how fundamentally I’m being affected by it, and the doctor says that he didn’t know of cases where it cured or fixed a fib permanently (he works largely with autism, Parkinson’s, and other autonomic nervous system issues ) but my understanding is that it can heal the autonomic nervous system, over a period of years, and that can reduce severity and frequency.

Singwell
Singwell in reply to Ablation627

What's it called? Very interested as my vagus was severed at the digestive end in the 1970s after I had a perforated stomach. I didn't have an ulcer but they did it 'just in case' and now I'm stuck with it and the associated digestive issues. I've successfully addressed these with diet. I agree - lots of changes - but because life is better you don't notice them that much.

Ablation627
Ablation627 in reply to Singwell

The one you can get without a prescription is called the vitality smart cable and the doctor who created it is Dr Patrick Nemechek: nemechektechnologies.shop

I'm with you, Guitar335, with a few extras...

No pharma at all

Next to no alcohol

Staying hydrated

Plenty of sleep (7 hours at least)

At least an hour outdoors every day, ideally moreMeditation a few times a week

Energy healing fortnightly

Essential oils daily (Frankincense and Ylang Ylang are particularly useful)

Yoga once a week

Magnesium, Vit C, Vit D, a multi-vit, a probiotic, turmeric, and a couple of other bits and pieces daily

95% veggie diet (bit of fish from time to time), as much of it raw as possible

I have never medicated my afib or had any intervention — came close to having an ablation a few years ago but decided instead to persevere with alternative therapies and I now treat my afib as just part of who I am. It doesn't scare me or even annoy me any more, and it doesn't stop me following the outdoor pursuits I love. It's just something to be acknowledged and accommodated until each episode is over. It's usually triggered by stress — though red wine is an absolute no-no! — and so I do all I can to keep stress levels as low as possible.

I suspect my afib is vagal in origin as I also have tinnitus but no other health issues.

My GP is fine with my approach as he can see I've done shedloads of research and take full responsibility for my choices.

No alcoholNo caffeine

Exercise regularly

Try to reduce stress

Mediation

Sleep Apnea machine

Calcium Channel Blockers for BP

Keep my Thyroid T3 and T4 low range of normal ( Graves Disease)

Keep Hydrated

Gluten Free

I stopped drinking al cohol after my April 2019 ablation. May have a glass of wine someday - but don't want to fight myself about limit setting right now. Easier to just drink fizzy water.

Try to exercise at least 2 miles a day.so I can get that decent sleep I know I need.

Play music (guitar) to go to another zone.

My AF managing strategies are:

Gluten free

No alcohol

Magnesium daily

Stress as low as possible

Keep hydrated

Regular food

And I've just discovered that the low carb diet I was on doesn't seem to be good for me - I've recently added more carbs (rice, gluten free pasta and bread) and my AF episodes have halved.

I do much the same - except the magnesium. How is it helpful?

Reading all the positive steps and ways we are trying to manage AF...and sometimes they work for a while, sometimes they don't, and sometimes ablations are more than 'one and done' and even with pace & ablate, there can be AF anyway etc etc.

I know we're all different, what might work for one may not work for another, and medication is usually always a fine-tuning process which often has limitations.

I'm glad I'm not alone, I'm not very brave at all, and I find sharing our stories etc very helpful. I appreciate getting answers and suggestions and encouragement from this forum, and I'm also so sorry we walk this path.

Singwell
Singwell in reply to Doggiemomma

I'm not brave either - anxiety and depression have visited a lot in this last 13 months since I was diagnosed. Obviously the pandemic doesn't help. You're still here, the sun still shines. I'm hoping you are warm and safe in your home and can enjoy being there. Think of the things you CAN do and still enjoy. Try to fit one in twice a day.

Doggiemomma
Doggiemomma in reply to Singwell

Thank you, Singwell, for your kind words. Every night, I acknowledge my blessings and am thankful for many things.

Your post is very timely for me. I have had 3 PAF episodes in quick succession which concerns me. I will borrow some of your tips and hope they do the trick.

Still learning about AF and how to manage it. Acquired AF as a result of operation for Triple Bypass, Davids Procedure and LV Repair.

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