Introduction post for Permanent AF 41yr old male - asking for advice on dealing with symptoms after abalation

[Joberton]

Hi everyone I'm new to the forum but I have read plenty of posts which have been very helpful and informative.

Thought I would give a quick introduction of myself, I'm a 41 yr old male with Permanent AF diagnosed in Nov 2015, I've since had Cardioversion which lasted two weeks and opted for PAF ablation back on June 7th and all seems to be going fairly well.

I've had lots of side effects after the ablation but all in all i can report an improved lifestyle even after a short period 76 days (as of the 22-Aug).

Before the AF I considered myself to be in great shape and regularly played squash on a competitive but not professional level. Training regimes were tough and took their toll. I have no answers as to why I have AF and what may have caused it and can only guess I over trained or became dehydrated too often as I led a relatively healthy lifestyle.

I'm looking for any hints / tips / tricks on managing the symptoms I'm experiencing after my ablation, mainly late evening I experience ectopic beats followed by a heart in mouth feeling (like going over a bridge quickly in a car) which sometimes lead to the shakes where legs and arms shake like they would if you were freezing cold. They dont always happen in this order but i've had a couple of bad events that have lasted a few hours. I've learnt not to fear these symptoms as the anxiety makes them significantly worse but am hoping to manage them better.

Over to you guys :O)

[BobD Volunteer]

Regarding ectopics there is a useful breathing trick which involves slowing your breathing right down to less than six breaths per minute. Breath from your diaphragm not your chest and see how low you can get. I can do 3 1/2 breaths per minute and you need to keep that up for five minutes minimum. You will be surprised how successful it can be.

Yes at your age the training may well be the reason for your AF as it is well know and very common in athletes. especially endurance athletes. That and fighter pilots for similar reasons-- over stressing the heart.

[Joberton in reply to BobD]

Thanks Bob, I'm not sure I can breathe in and out for that long but I will certainly practice and see if it works for me. Focusing on something else tends to take my mind of the situation which when you focus on the symptoms it can compound the problem sometimes.

[PeterWh]

Welcome. You may have had a predisposition to AF. Also it is likely that a number of different things were contributors. In reality you'll probably never know but the key thing is to avoid or be wary of key triggers including adrenaline, alcohol, processed foods, salt, sugar, etc.

As to your evening events have your thought of the fact that you could be getting tired and therefore the heart becomes strained and can't hold it together so to speak?

I am in persistent AF but when I get tired mid afternoon or a bit later I feel my heart playing around and straining so to speak.

[Joberton in reply to PeterWh]

You could be right but I seemed to be permanently fatigued nowadays, something that I just get on with. It only seems to do it at the end of the day, typically just when i need to relax and go to sleep!

[PeterWh in reply to Joberton]

Yes but can you take a nap for 30 or 60 mins early afternoon or as soon as you get home from work so that you don't get so tired? Try it over this weekend as it is a 3 day one. For me it makes a huge difference.

[traveler65 in reply to PeterWh]

@PeterWh If your heart is having an energy crisis (gets tired out)- do you perhaps need some Co Q10, magnesium, taurine resveratrol, pqq, nicotinimide riboside. The heart needs CoQ10 to function, needs more as we age and is depleted by heart meds; the mirtochondria (energy factories in each cell- which includes heart muscle cells )) need Co Q10, magnesium, and T3 (active part of thyroid hormone) to produce energy (ATP). Also nicotinimide riboside nurtures the mitochondria, which begin to degrade with age. Ablood test can tell if your co q10 and magnesium are too low. red blood cell magnesium is the appropriate tesast and your level should be at the max range for thus test in order for there to be adequate magnesium inside and between your cells.

[smwdorset in reply to traveler65]

My goodness I don't understand a word of this but it sounds very erudite. Are you saying that AF or post ablation people need to take supplements? No one has mentioned a word about that to me. Has anyone else been advised along similar lines by their EP?

[traveler65 in reply to smwdorset]

@smwdorset Hi When in hospital after ablation, my sinus rhythm and heart rate were normal. Then almost as I was going to leave, I had abnormal suinus rhythm ( they took an ekg every 20 min during recovery observation)-- so the ep had a blood test for potassium andd magnesium and the results were abnormally low. He gave me an IV of magnesium sulfate and I ate 2 bananas for the potaSSIUM. tHEN THE EKG WAS NORMAL. tHE DRUG HE GAVE ME, SOtalol and the blood pressure meds I had been taking since 2006---deplete the body of electrolytes and trace miins--so I had been taking supplements for quite some time, as well as bhrt--but these are my own personal health protocol. Before leaving, I was told by the EP to make sure my magnesium and potassium levels were kept high enough ( but not too high), because when on sotalol if these fall too low it could result in torsade des pointes (dangerous sometimes fatal tachacardia). The electrolytes are also obtained from foods. You can find the complete nutritional content of various foods on web sites of natiuonal institute of health in USA; on foodscience.com and on thescience ofeating.com

[traveler65 in reply to smwdorset]

smwdorset Try reading about heart function nutritional needs, mitochondria nutritional needs. You can find this information on a web site called LEF.org; also biofoundations.org When you get to these sites type in a search for info about each of these things:L coenzyme q 10; taurine; resveratrol' pterostilbene; blueberry extract; magnesium-L-threonate; magnesium glycinate; magnesium taurate; potassium You can also look up what foods contain minerals and electrolytes etc. It's merely a knowledge is power kind of thing. The more you know about what your body needs and what your heart needs to function well, the better you will be able to take care of it, and you will feel better. Not trying to be eriudite--just using info.

[smwdorset in reply to traveler65]

thank you - will do

[Perrylees]

Hi

I find your post very interesting as I have experienced something fairly similar though not identical after ablation. My ablation was at the end of March. I had the strange falling sensation ( not with ectopics as far as I know though) but with a wobbly disoriented feeling too which would last for several hours and always late at night . It totally wiped me out for the next day and was very anxiety inducing ! This always seemed to happen after alcohol - I'm not talking about lots here - a glass of wine is all. So I just stopped drinking and haven't experienced anything similar since.... Weird.... I'm now considering trying to re- introduce some alcohol but I'm unsure about how sensible this is! Just wondered if this might be relevant to you though or perhaps you are sensible and don't drink. 😃

[Joberton in reply to Perrylees]

Hi Perrylees, its not alcohol related i'm afraid i only tend to drink birthdays and christmas :O)

The feeling i get is only for a few seconds and goes away but causes me to feel anxious and as a result the heart rate goes up. Someone else described it as the feeling you get when something makes you jump crossed with a feeling of indigestion if that makes sense.

I had this badly a few weeks ago and now I get midler symptoms (but not sure if its because im not as anxious now)

[traveler65 in reply to Joberton]

@joberton How about trying eating some high potassium, high magnesium foods: dates, almonds, walnuts, sunflower seeds, dried pomegranate, dried mangoe.and similar--- due to the potassium, magnesium, trace mineral carb, fat protein content you get a boost of things required to produce atp=energy. try it. sort of like a special trail mix for afib. Also, taking 1 cap of Thorne Research brand reduced glutathione will give you a greater depth of breathing because it detoxes the space between your lungs and the surrounding lining. and also detoxes the liver.

also low dose 30 mg. Co Q10. At our age the body still heals itself but sometimes needs a little help by supplying the ingredients required to maintain everything.

[traveler65 in reply to Perrylees]

@Perrylees Hi alcohol is an afib trigger and does not work well with any rx meds for afib or bp.

[Perrylees in reply to traveler65]

Alcohol doesn't trigger AF for me. I'm not a big drinker anyway and what I experience isn't AF. I've stayed doggedly in NSR the whole time thank goodness. Also I'm only on apixaban now - no other drugs. Of course it could be totally unrelated - I do think we tend to blame everything on AF or the drugs!

[traveler65 in reply to Perrylees]

@Perrylees I used to drink when going out socially--either wine, or vodka gimlet. However at one point I realized I was allergic to alcoholic beverages , so I stopped and many adverse symptoms disappeared. As of 2015, after the ablation I stopped very strictly drinking altogether because it is not advisable for the afib condition and also does not mix well with afib meds. You can check online for adverse interactions of all rx. drugs, supplements qand foods with certain medical conditions, and bad interactions between foods and rx.'s

[Emsysy]

Joberton, I know exactly how you feel. I was the same 11 years ago. Now been in permanent AF for around 6 years but feel better than ever i have. Play badminton, table tennis and walk long distances and cycle a bit. Walked 50 miles in Somerset a week ago over 5 days. My cardio says to keep the heart fit and just look after the rate. They can't do anything about the rhythm now. Bisoprolol does the job for me and, of course, I'm on warfarin.

The main thing is to always be positive, hard though this may be initially. I always say, Be The Boss.

Best wishes.

[smwdorset]

Hi joberton - you say you had your ablation 42 days ago. For what it's worth I was told by my EP that there is a period following most types of ablation called the 'blanking period' during which the heart is recovering from the trauma of the ablation and scar tissue is forming which is needed to stop conductivity etc and that therefore it is quite common to experience strange flutters, ectopics, even periods of AF - none of which mean that the ablation 'hasn't worked'. That is why you will I guess still be on anticoagulants - in my case for review after 8-10 weeks. If the symptoms are troublesome or don't resolve then you may need some intervention. Don't hesitate to ask for advice - you should have been given a number to contact a cardiac nurse and/ or a means of consulting the EP even if not directly. And of course if you feel really unwell just go to A& E. Don't take chances. You are not the expert - they are. One practical tip - take your discharge letter and pre and post AF ECGs with you. Once you show these to the reception at A&E I find you get straight into triage for an ECG and if there is anything bad happening you will find yourself in 'rests' ' pdq.

In my experience this is where the NHS really shows its mettle - so long as you can feed In the right info. If you don't have these documents just say you have recently had a cardiac ablation ( cardiac is the magic word here) and that you think you might be in AF or are worried you might be having some significant heart problems ( so long as true of course). Hope this helps.

[bambi57]

hi Joberton I am 3 months in after my ablation and i had it from as long as i remember after years of meds they finally decided to ablate me . this is my first ablation so all new to me as well i have been Af free since the ablation but now i am getting etopic beats had a really bad day yesterday but seem ok today hope you are feeling better

[Joberton in reply to bambi57]

Hi Bambi, sorry you had a bad day yesterday, your not alone after ablation there are plenty of ups and downs, I still get ectopic beats myself along with the occassional wave feeling like going over a bridge in my chest, but I tend not to be as anxious about it now as i did before and it really does make a massive difference having that positive mindset.

I saw my electrophysiologist <sp?> the guy who did the actual abalation on me last week and he seems to have put a positive spin on my symptoms which makes sense to me.

I had permanent AF for approx 9-10 months before my ablation so my chances of success are less than most but if my heart goes back into an irregular rhythm I just see it as two weeks off work and another op with a higher chance of success.

When i had the operation I knew they would only do the bare minimum to start with and take it from there.

Im glad you are feeling better today though!