Am I really an 'enigma'?

[Sebbs]

Hello everyone,

I am a 45 y/o male with managed Hpyertension , but otherwise healthy. I was diagnosed with AF back in September 2014. I underwent cardioversion which last for 3 days. After this I was told that my AF was permanent. I had catheter ablation in November 2014 but was told I would probably need a 2nd. Medication provided was Sotalol 80mg twice daily and Rivaroxaban (Xarelto) 20mg once daily. The 80mg Sotalol does not agree with me as it makes me feel very tired and lethargic. My GP agreed. Therefore I was prescribed 40mg instead. April 2015 saw my 2nd ablation. Everything seemed ok following this. I had my 3 month follow up and was told I was 'clear' and came completely off the meds apart from the Rivaroxaban.

Come mid August 2015 and AF was back. We tried Flecainide with Bisopralol due to issues with 80mg Sotalol. However, this was as effective as the 80mg Sotalol and I had a massive episode - worse than anything I had experienced before and for around 8 hours. I had my 3rd ablation in November 2015 and again AF returned at the end of December. I saw my consultant yesterday who has confirmed that my AF has returned and that he is at a loss as to why it keeps returning. He mentioned that I am indeed an 'enigma'. We are now going to try 40mg Sotalol twice daily along with 100mg Flecainide twice daily. I started this last night when I got home and so have now had two and I am still having bad AF episodes.

Has anyone else gone through a similar (or worse) experience? It would be interesting to know. I would dearly love to know what options there are for me - would a 4th ablation really work? Would it be possible to locate where an episode is starting from and maybe get it treated that way? Why doesn't my consultant want to fit a pacemaker?

Take care everyone

Shaun

[BobD Volunteer]

OK Shaun, a pacemaker alone will not stop AF. A pace and ablate where they burn out the AV node would allow the ventricle to maintain a steady beat regardless of the fibrillation in the atria but would leave you pacemaker dependent. At your age you may need multiple replacements for battery changes etc so I can see why your EP is reluctant to take that route now.

By the way. during ablation they do stimulate AF to see where it is coming from so I too am puzzled as to why after three ablation you are just as bad unless you are one of those unlucky? people who repair the scar tissue overly well. Mine took three to fix but that was 7 years ago and whilst I do still get some arrhythmia, not AF.

[Sebbs in reply to BobD]

Hi Bob,

Thanks for the reply. I guess I must just be one of those unlucky folks that keeps healing! I think my EP was suggesting to look elsewhere in the heart rather than the usual suspects. I'm taking the rest of the week off work, to get my head around everything as I have had a really bad time emotionally trying to cope with my AF. On top of that I need see how the Flec and Sot mixture works and if it doesn't decide what's best for me in the long-term as it has also been affecting my work.

Thanks, Shaun

[SRMGrandma Volunteer]

Hi Shaun, Sorry that you are feeling like a puzzle that is tough to solve. I think a lot of folks on this forum share similar frustration and I hope they chime in for you. My question to you, is about your lifestyle, wondering if you have a healthy diet of mostly (or all) fruits and vegetables, avoid stress, get good sleep and daily exercise? Ablations are much more likely to last when all those things are in place and it is important to keep your heart as healthy as possibly aside from the electrical malfunctions. I too have had long standing hypertension in spite of all my best efforts, (though admittedly I did not know to be on a plant based diet until a couple years ago, and I was not diligent with my exercise until then either). If you read Dr. Michael Gregor's book HOW NOT TO DIE you will find so many ways to help your health. The suggestion about drinking hibiscus tea was most interesting to me to lower blood pressure. I started to drink it 3x/ day for the past 3 weeks and my blood pressure is down 12 points systolic and 10 points diastolic. This is really important because hypertension is a known cause of AF and I don't want it to come back post ablation. If your consultant is at a loss as to what to do, i call that time to find a new consultant. Be well....do whatever it takes!

[Sebbs in reply to SRMGrandma]

Hi Sandra,

Many thanks for replying. My heart is very healthy, even the ultrasound lady that came after my ablation mentioned what 'a nice heart' I have. My consultant says that structurally, I have the heart of someone half my age, and that when it beats it is very strong! When I am in SR my resting HR is around 45-50BPM, I have no scarring and previous cardio-logical issues. I mainly eat a Mediterranean style diet, so lots of meat, veg and fish (in fact we had cod with spinach and potatoes last night!) We always home cook and very rarely have takeaways. We make our own pasta, sometime own bread. Even pasta sauces are homemade and we cook using either Extra Virgin Oil or Virgin oil.

Like you, I had Bisoprolol and Flecainide which did nothing for controlling my AF.

What is an 'Anatomical ablation'? I have only just started the Flecainide and Sotalol combination so will keep you posted as the week goes on!

Cheers, Shaun

[SRMGrandma Volunteer in reply to Sebbs]

I really tried not to answer this, but it has been on my mind all day. There is a lot of misinformation about the Mediterranean diet and heart health. Animal products case major inflammation in the vessels and are not heart healthy. Any cardiologist who does not tell you that (and docs are notorious for not learning anything about nutrition) have either not read the studys, or they are happy to get the repeat business that eating animal products give them. A whole food plant based diet is proven to prevent and reverse heart disease. It sounds like you are doing a lot of things right, but a lot of meat, fish, and oil are not heart healthy. Suggested readings: How Not To Die by Dr. Michael Greger and Forks Over Knives, or just go to the website for Physician's Committee for Responsible Medicine and there are a wealth of resources. Be well.

[Riversmom1 in reply to SRMGrandma]

This is sooooo true. I have yet to hear anything from cardiologists regarding how important diet is , and those resources mentioned above are excellent and well worth your time to read and take to "heart" the programs as outlined to reduce inflammation overall in your body. Make that move away from animal proteins and fats.

[SRMGrandma Volunteer in reply to Riversmom1]

I was so fortunate that my EP is the one who sent me to class to learn to eat a plant based diet to reverse my heart disease. It has been 5 years now. Life changing!

[Hidden in reply to Sebbs]

Shaun , I should have said Autonomic ablation,...as I understand that the Cardiac Autonomic nerves are ablated for prevention of vagal AF.

Sandra

[LondonEngland in reply to Sebbs]

Hi Shaun,

We are pretty much the same age. I went through a rather unpleasant experience last January because I had been in a fast AFib for well over a year. In January I was exhausted from the Christmas period and then had a very busy period at work when I caught the swine flu.

The combination of the above pushed my body to its limits and I ended up in the ER with an ejection fraction of only 5%. They put me into an induced coma which I came out of in a couple of days and I have been very very fortunate to be recovering I think fairly well. The last time they checked my heart was back to working within the normal ranges which was on an MRI that I had in preparation for an ablation.

I had the ablation on 29 July and my ticker has been beating nicely which is a tremendous relief. I am still on Bisoprolol, Apixaban and Ramipril which is an ACE inhibitor due to what was a low ejection fraction. The doctors are hopeful that I can come off the meds in about a month or so.

The above is just to give you an idea of my background but the reason for my post here is to say that I noticed a correlation between my heart speed and AFib in that it sometimes appeared that a very low rate triggered it. At the time mine was going into the 40s at times I think due to the combination of Amiodarone which I was on before the ablation and the bisoprolol. I have an Apple Watch with the ECG and also an Alivecor so I was keeping a close eye for triggers when I noticed the low rate.

I know that each persons circumstance is unique so your rate might not be a problem but it might be worth monitoring just in case. When mine was really low I would have some green tea and or dark chocolate which often seemed to help,

[souljacs4 in reply to SRMGrandma]

Can I butt in and ask which hibiscus tea you use.

[SRMGrandma Volunteer in reply to souljacs4]

Not butting in at all. I use Organically Hip Hibiscus, available on Amazon. Anything where hibiscus is the only ingredient is good. And you can also steep it along with green tea or orange tea to add more punch, change the flavor, etc.

[souljacs4 in reply to SRMGrandma]

Thank you. I will try that the orange tea sounds really nice too

[Hidden]

Hi Shaun,

I too have had 3'ablations, the first 2 being Pulmonary vein isolation and the third mainly for A/flutter .

My AF is thought to be predominantly vagally triggered and so i am taking the drug Disopyramide ....not commonly prescribed these days but it has helped a great deal. Flecainide does not work for me and Bisoprolol does next to nothing. As I'm still getting bouts of persistent fast AF which require DC cardioversions my EP is referring me to Hammersmith hospital London to see if an Autonomic ablation would be feasible.

As Bob says you are a bit young for a pace/ ablate procedure although I think we have at least one member on this forum in their 50 s who had had it done ( Wendy ?)

Sandra

[constabule]

On my second admission within a couple of months I got told I was a nuisance - I figured if I can be a nuisance I am in reasonably in good fettle. I think the medics meant it kindly though and that what might be my trigger was at that time causing some head scratching .

So I guess its the nature of the beast and each of us cause the medics some puzzlement.

[PeterWh]

I am assuming that the consultant's comments that you refer to are your consultant EP's?

Often cardiologists / EPs/ GPs are only looking at his areas and not wholistically both medically and re diet. A few suggestions:

How often have you had a complete set of blood tests and how recently?

Have you had lung X-ray?

Have you had a SA assessment.

Are you regularly measuring HB and BP?

Have you started eating breakfast later and evening meal earlier?

I am in persistent AF but I find eating smaller and more frequently keeps my AF on a more stable course (rather than larger meals and late).

Do you get worse days and better days - if yes start keeping a log (events and foods) to see if triggers can be picked up.

[Barb1]

You mention you have hypertension. Do you mean pulmonary hypertension. I ask because I have fairly recently been diagnosed with that and I am told it has an effect on AF. My 4th ablation was a year ago and that is when the PH was found. Touch wood I am still in SR and undergoing numerous tests re the PH.

[SRMGrandma Volunteer]

Thank you for such kind words. I wish someone had told me these things 40 years ago. When you know better, you do better. Be well, Kai. Blessings right back to you.

[JonathanPittsCrick]

Unfortunately your story is not very unusual. The electrically unstable cells that trigger AF typically occur just inside the 4 pulmonary veins and these are isolated from the rest of the left atrium in the ablation procedure. The problem is that the cells can actually be anywhere in the left or even right atrium and as they are not active all the time it can be very difficult to find them. The other problem is that we don't know for sure that these cells are always the main cause: other factors such a a slow pulse rate affecting the atria generally may be the dominant cause especially when attacks start at night (so-called "vagal mediated" because the vagus nerve slows the sinus node and may affect the atria in other ways).

Since 1990 I have implanted pacemakers in people with AF with a view to AV node ablation and I have found that in cases with mainly bradycardia-related AF the pacemaker often abolished the AF attacks and AVN ablation was not needed. You mentioned you have a slow pulse rate even during the day - have you checked how slowly it goes at night (with a 24 hour Holter)? If it goes below 40 this could be a cause for the AF.