My PAF has gone crazy...

Hi

Sorry, this is long, but it's pretty complicated

I have had lone PAF for just over 5 years. It has always been controlled by 2.5mg Bisoprolol as and when I went into AF. Episodes only happened a few times a year and although I never really came to accept them, I managed ok.

Any increase in frequency could usually be remedied by a slight adjustment in my thyroxine - I always seemed to need 125mcg thyroxine to feel well, but my heart would only ever tolerate 100mcg.

I started to take various supplements recommended here and that seemed to keep everything nicely settled.

However, around the same time that I had Shingles in September last year, I started getting AF a few times a week. Thinking it could be my thyroid again, I reduced my thyroxine to 75mcg (my GP allows me to tweak it as long as I keep him informed).

This didn't seem to help, so I reduced it further to 50mcg. My heart seemed to settle to some extent in combination with taking 2.5mg bisoprolol every day.

However, the AF started to gradually increase in frequency again and my doctor advised me to increase the bisoprolol to 3.75mg. This helped for a while, but the last couple of weeks my AF has gone crazy. I'm getting it every day, several times a day, lasting from a few seconds to 7 hours. Most episodes seem to come when I'm asleep, at rest or when eating or digesting, so are probably vagal in nature.

Cleaning my teeth set it off this morning (something to do with having my mouth open? ) and certain neck movements will do it as will lying on my side or sometimes just reaching for something or even a hug Meditation can sometimes, though not always shorten an episode.

My GP advised me to try 5mg bisoprolol (which I took in a split dose - 2.5mg AM and PM) but that seemed to make things worse if anything, so I dropped it back to 3.75mg.

This is all complicated by the fact that I am approaching menopause and my hormones are a bit crazy. I was using progesterone cream for around 6 months last year, but when the results of a salivary hormone test came back with progesterone off the scale and oestradiol very low I discontinued use in December. (I had already suspected that the increased AF could be connected in some way to the progesterone, though now I'm beginning to wonder)

I take Taurine 3x500mg / day, Potassium gluconate 3x99mg / day, magnesium glycinate 6x100mg, magnesium lotion, ubiquinol 3x 50mg, arginine 3x500mg as well as various other more general supplements.

I did try a different potassium gluconate 3x 500mg, but that seemed to make things worse. Oh and I had a UTI, for which I took potassium citrate 3x 3g for 2 days, which seemed to settle my heart. However, subsequent trials of the same treatment did not seem to help and possibly made things worse.

I have now added in D-Ribose 3x 5g and Carnitine Fumarate 3x 500mg. I thought at first that this was helping, but now I'm not so sure.

I was also taking VegEPA x6 (EPA 560mg, GLA 18mg, Vit E 2mg) but was advised by a private doctor that this could be making fatty acid deficiencies worse in other areas so discontinued in January. He wants me to have a fatty acid profile done by Johns Hopkins and thinks that this may be the key to figuring out my AF, but it costs £360 so I need to be very sure it will help...

Diet wise, I am generally gluten and dairy free. I tried to go paleo a few weeks ago, but that coincided with the AF getting worse. Whether it was related to this change, I don't know, but I have abandoned it for now. Apart from anything else, I just don't have the energy for a change in diet right now.

My thyroid test results in November were somewhat confusing, showing a raised TSH with an FT3 towards the top of the range:

TSH 5.5 (0.4-4.0)
FT4 14.7 (10-22)
FT3 5.2 (2.8-6.5)

A repeat of FT4 and TSH by my GP in January showed:

TSH: 11 (0.35-4.5)
FT4: 13.4 (11-24)

After this test my GP advised me to increase my thyroxine back to 75mcg, but after 2 weeks was when my AF started to go crazy, so I reduced my thyroxine back to 50mcg.

Because there are so many possible factors involved I'm finding it impossible to work out what might be going on and this is ruining my life as I am very symptomatic with my AF and with most of the episodes happening at night, I need some sleep!

Even though I am terrified of ablation I am now seriously considering one and have made an appointment with Dr Schilling, but the appointment is a month away and I need advice now

I am currently waiting for my GP to call me back and suspect he will change my medication, though I'm scared that something else will have worse side-effects than bisoprolol, which is already making me feel like a zombie...

Any advice or suggestions for medication or natural remedies to try would be gratefully received

Sally



Edited 2 time(s). Last edit at 02/17/2014 03:20PM by Shannon.

The iodine protocol works: [www.breastcancerchoices.org]

Can't say from personal experience, because I found that my trigger was cooked carbohydrates/low fat.
Still, I do the iodine protocol for many other reasons, as it turns out to be an essential nutrient for all the body.

Thanks William. I will investigate the iodine protocol.

It's interesting that you say that low fat was a trigger as the doctor I saw in January said I have a very low fat diet (who knew?! Lol!). That's one of the reasons he wanted to get a fatty acid profile done. Your experience seems to support his theory that correcting my fatty acid imbalances would help my AF.

Sally

Welcome, Sally... I'll address just a couple of potential aspects for your consideration. More later... but when I read that you take arginine and then had Shingles. I needed to respond to that first... Be aware that arginine helps promote that outbreak. Best to focus on Lysine and stop the arginine. Arginine can also be too stimulatory in some afibbers and cause more afib so you may find relief from that aspect as well once you stop.

Since you're a new reader, you should start reading Conference Room 72 about potassium and what that means to controlling arrhythmia. If your potassium intake is low but your sodium intake (salt) is high ... as in hidden sodium in most prepared and packaged foods, then that sets the stage for arrhythmia.

Read here:
Potassium/Sodium Ratio in Atrial Fibrillation (February 7 - June 11, 2011)
[www.afibbers.org]

Additionally, you must make sure that your magnesium intake is optimal. You may not be getting nearly enough with just the topical magnesium gel. Magnesium must be abundant inside heart cells before potassium can do its important work... but if your dietary intake of sodium overpowers the potassium continually, you won't make any progress in controlling the arrhythmia.

More later.

Jackie

Hi Jackie

Thanks for your reply

I'm not new - I've been posting here on and off since my diagnosis 5 years ago I tend to stay away when I'm managing my AF ok, otherwise I can tend to get a bit obsessed and make things worse.

I did know about arginine and shingles and stopped taking it while I had shingles and for a couple of weeks afterwards. I was originally advised to take arginine by an alternative doctor who said that from his knowledge of me it would reduce my ectopics. But that was a few years ago now, so I'll try cutting it out and see what happens.

I take magnesium glycinate 6x100mg (to tolerance) every day as well as using the magnesium lotion twice a day. Unless my body is not absorbing it it seems unlikely that I am deficient.

I do understand the importance of potassium but I will have another read of that document. I rarely eat processed food and use sea salt in my cooking, though I've never been one for using much salt at all. Does the same thing apply to sea salt wrt potassium?

Thanks once again

Sally

Hi Sally,

Sorry the hear of your increasing AFIB woes, its a common story around here so there is plenty of company. The underlying drivers for AFIB tend to increase for many people even when we've been successful for a good long while in putting the lid on the kettle supplementally and diet wise.

The struggle with your thyroxine dosing is also a common story though few GPs follow it well. Taking T4 for long periods of time can often result, particularly within a backdrop of gradually increasing adrenal dysfunction which also is entirely common in hypothyroid people, in an increase in cellular Reverse T3 production instead of the usually conversion of the storage thyroid hormone T4 into the cellular bioactive thyroid T3 hormone. As more Reverse T3 displaces bioactive Free T3 at cellular receptors you can start to feel increasing hypothyroid even on doses of Thyroxine that were previously sufficient to keep you feeling have way decent.

T4 only preparations can work for some for a good long while but for a majority they are an entirely insufficient for long term thyroid balance that feels right as well. Go to this link to learn all about this phenomena at a very handy website with a lot of useful information: STTM.

in addition your recent labs posted are CLASSIC for 'low T4 syndrome' in which an unaddressed adrenal/cortisol dysfunction is causing a too rapid conversion of T4 into both T3 and Reverse T3 such that you can have both what appears to be borderline high or even frankly high Free-T3 blood levels as well as either mid-average to borderline low FT4 reference range blood values. In addition, because excess Reverse T3 is blocking many of the cellular T3 receptors the highishe level FT3 blood readings do not necessarily manifest as a hyperthyroid symptoms and can be accompanies even by TSH readings like yours that are frankly strongly hypothyroid!

The problem is this condition can be a real can of worms in terms of AFIB stimulation and here is why.

The conversion of T4 into either T3 or Reverse T3 is dynamic and can change intraday as well. So while you might have an over all increase in RT3 blocking much of your T3 cellular binding, there can be times when you are getting excess FT3 through to the cells sa well.

In addition, the low cortisol production which itself can be variable throughout a day when your adrenal system in dysfunctional. since it causes this spike of conversion of T4 into T3 it can cause mini- hyper thyroid spikes that can easily trigger more cardiac instability even with a high TSH reading!

Furthermore, a low cortisol condition will also mean that when your body is under stress, such as preceding and during an AFIB episode, it cannot marshall enough cortisol production to reduce and calm that physiologic stress burden. As such, the adrenal glands resort to its fall back adrenal stress hormone which is none other than good ole' ADRENALINE!!

Adrenaline, to say the least, is not an ideal long term physiologic stress hormone at all and the body turns to it only as a last resort when there are not enough building blocks for cortisol production or there is some enzymatic problem or glandular dysfunction that prevents producing enough cortisol on instant demand. Adrenaline is our 'fight or flight' hormone intended for very short production in an urgent situation like jumping away from a speeding bus or a charging tiger in the jungle. It works great for that purpose, but as an on-going fall back hormone it can trigger cardiac arrhythmias very easily as well as lead to accelerated catabolic tissue destruction over time.

Alas, only the more enlightened endocrinologists will recognize this rather straight forward cascade of events, and extremely few GPs, much less know what to do about it. As such, it might help that you seek out a good functional medicine MD there in the UK for long term consultation on your possible contributing metabolic issues here.

But in the meantime, its sound unlikely for you to avoid an ablation now. You note a 5 year period of slowly increasing AFIB episodes marked by a long period of relative success using the nutritional protocols. This is a very familiar course of events for many of us.

I would get thee to the very best ablationist you can find ASAP, and if you cannot in any way make it under the 'Chunnel' and down the French coastline a bit to Bordeaux for a week to have a consult and an ablation the next day, then find the very best man or women EP with vast experience you can in the UK. Possibly that is Schillings, but I'm not entirely sure Sally. Most EU EPs tend to be too conservative for my liking with few of them even using isoproterenol to challenge their ablations while you are still on the table. As such, when you look at many EU surveys they tend to have both more reconnections and more repeat ablations needed, than do the elite level operators in both the US and EU such as in Bordeaux.

If you can make it to Bordeaux by any chance, that is my best advice. If that is out of the question, then you may indeed do well with Prof Schillings or another top UK EP. But the sooner you get this done now and not procrastinate the better. You have done the nutrient protocols it sounds like to me fairly religiously for a good while. To now continue delaying simply out of fear, is not likely at all to be in your best interest either short term and especially long term. Do not wait until you hit persistent AFIB which is sounds like may not be that far off and can appear at any day, as then, the number of EPs you can confidently expect to successfully address your persistent AFIB will suddenly turn into a much shorter list than those who can handle a straight-forward paroxysmal-only case.

I would not think about trying to get your adrenal/thyroid picture idealized now either in hopes that will postpone any ablation further, as it will take a lot of time to find the right Doc to guide you through that process and it can take a good long time then to even start to realize the results, and the odds that even doing so would prevent the need for a solid ablation at this point with the amount of remodeling that has likely already taken place is very slim.

Get the ablation and then work hard to better understand and address these metabolic/hormonal issues which will only work far better within the backdrop and safety of a solid ablation or two on board.

Make sure you are getting a good amount of solid complex of B vitamins and Vitamin C in an absorbable form (around 3 grams a day) and you could add in some adaptogenic herbs like Ashwaganda which might help some as well in the meantime with supporting your adrenal function to some degree while you go through the whole ablation(s) process and healing.

Until then, you may have to tough it through erring a little more on the hypothyroid side of the coin rather than trying to optimize your Thyroxine as that, as you have found, can increase your flippies too much as well. Also, while you are going through this ablation issue, read the entire Stop the Thyroid Madness website linked too above, as well as Hormone Restoration. You can also visit Dr Thierry Hertoghe's website at Dr. Hertoghe in Brussels which is just a short chunnel ride away from you as well to get some great guidance from some real experts in this area of metabolic/hormonal optimization. Then, by the time you have a good ablation under your belt, you should be much more familiar with other good options for addressing your thyroid and very likely adrenal issues as well.

Best wishes and keep us posted Sally,

Shannon



Edited 2 time(s). Last edit at 02/17/2014 03:30PM by Shannon.

Oops Sally,

My apologies! I just noticed that by mistake I deleted your original post to start this thread when I was writing my reply to your post, and my reply now appears at the top of this thread in place of your now vanished original message. Gulp!

This happened because I am still relatively new at having the 'God' buttons that Hans recent'y turned over to me to take charge of the whole website, and even it seems that even this new 'demi-god' status is far from infallible :-)!! This is the first time I've discovered( the hard way) that I must be extra careful to insure that I am replying within my own reply box and not, by mistake, start to reply within someone else's message by hitting the special 'edit' button that I now find showing as an administrator at the bottom of exact message posted which, in this case, deleted your message as it was replaced by my reply in your original space!

I will send you a PM with my private email address and if you can send me a copy of your original post, or if you didn't save a copy, some version that you wish to post, I will gladly restore it to the top of the page at the head of this thread again. I will send you my email address now by PM so please check for a private message at the top of this page.

Many thanks and apologies once again for the added effort on your part.

Cheers!
Shannon

Sally - sorry that I didn't remember you had previously posted. On the arginine... and the afib.. you have nothing to lose but the afib by stopping it. I realize that it's commonly advised and some people swear by it, but it increased my events when I tried what was recommended.

On the sea salt... salt is salt is salt. The pure, unprocessed forms are certainly healthier but it's still sodium.

My next comment was going to be on your thyroid and I see that Shannon responded to that. Definitely, consider that you may be iodine deficient and that is influencing your thyroid function.

Jackie

Thanks for your detailed reply Shannon! I have just emailed you with my original post.

What you said seems to make a lot of sense, although it's going to take a while to get my hypo brain to understand some of it.

You did scare me somewhat with talk of persistent AF! I hope it doesn't progress to that for a while because the earliest appointment I could get with Dr Schilling is in mid March and I would undoubtedly have to wait a few months for an ablation on the NHS. I'm not sure that I can afford to pay privately.

I did consider going to Bordeaux for an ablation, but what puts me off is the fact that I don't speak French very well. I think it could be quite scary to potentially be in a French hospital overnight after an ablation and not understand what anyone was saying to me! Do you happen to know how much ablation costs there?

I already take 3g magnesium ascorbate and high dose B vitamins in my multi vitamin. I will investigate ashwaganda for my adrenals.

Dr Schilling is one of the top EPs in the UK, which is the reason I chose him. I have no idea if he uses isoproterenol, but google produces no results.

As for my other health concerns - I recently started seeing a functional medicine specialist. He is the one who wants to do the fatty acid test, but I'm wondering if that is worth doing if I'm going to have an ablation anyway.

Anyway, thanks again for your post

Sally

Thanks Sally,

Your original post is all restored and all the stars are re-aligned again! And a good lesson learned for me to be extra alert around these new editorial tools I have inherited.

Bordeaux is around 15,500 Euros all total last I heard, that including not only the consult and ablation but 4 or 5 nights I believe in the hospital with a private room and dedicated nurses who all speak English for English speaking patients. Also, all the EPs there speak English very well so you would have no problems along those lines . Very many English speakers have gone to Bordeaux with no issues whatsoever with the language and so you can scratch that off your list of concerns.

If you can swing it to go there, I do advise it. If not, then Dr Schilling may well do a good job on this paroxysmal case. I would not worry about turning into persistent in the next 3 months. Yes it could happen but likely will not so quickly. However, don't press your luck with any more procrastination. I would get this ablation set in motion ASAP with the best EP you can arrange for yourself and then in the meantime discuss ways to keep the lid on the kettle not only with your EP but in adjusting your supplements too.

I agree totally with Jackie to stop the arginine now and also consider stopping the Co-Q10 for a bit just to see if you might have become sensitive to that as well. It is not uncommon at all for folks with adrenal issues to become sensitive to some supplements including in particular those that are involved with energy metabolism such as CO-Q10, arginine and the like.

I would switch the magnesium ascorbate to a magnesium glycinate, malate or taurinate chelated form as well. The high dose B vitamins in most multis are typically not enough to help the adrenals appreciably. looks for co-enzymated forms of broad B-Complex and also take individual doses of up to 50mg to 75mg a days in divided doses of P5P form of B6 and up to 750mg to 1 gram of B5 or Pantothenic Acid as well as B12 at 3000mcg to 5000mcg a day in the sublingual form as Methyl-cobolamin or Hydroxy-cobolamin forms.

Dr Schilling does not use isoproterenol to my understanding, it is a philosophical difference that some EU docs hold that makes little sense to me, but don't let that be the deciding factor not to see him. He has a decent track record from what i have heard. They may need a little more ablations over all than a comparably skilled EP using isoproterenol or adenosine challenge after they have make their ablation burns, but they have their theories for why they don't do use it. I just happen to disagree as do some of the top EPs in the world Natale among them.

Yes you should definitely follow through with your functional medicine doc Sally! The ablation can really help put a lid on the expression of AFIB, but the underlying metabolic issues are raging on and taking whatever steps you can to improve your overall health in that way with an emphasis on your known issues with cardiac arrhythmia and hormonal imbalance is definitely a good idea. Just as you should definitely continue with your nutritional supplement protocol for a quiet heart to help support the ablation as much as possible as a on-going program the rest of your life.

Shannon



Edited 1 time(s). Last edit at 02/16/2017 09:26AM by Shannon.

Hey Sally,

Shannon is completely correct in his comment that Prof Schilling doesn't use isoproterenol or challenge his lesions.

I had an ablation with him little over a week ago and would be happy to discuss the ins and outs of it if you want? PM me and I can give you all the details like where, how long op is, his definitions of paroxysmal/persistent, his methodology....etc etc

His stance is that he doesn't want to ablate areas that might actually not need ablating. Thus inducing AF, in his opinion, might lead to him doing work that you might not necessarily need or particularly want in your heart.

From reading past posts it seems that Bordeaux do try to induce AF upon completion of their burns thus can keep going if they haven't quite terminated the AF rather than wait 3-6months to see if their original lesions have worked. This definitely aids getting 'a one and done' in Shannon's own words!

I must say though that I thought Prof Schilling was extremely professional, most thorough and warranted his status as one of the top EPs in the UK. I met a few in the UK when deciding who to go with and none were in his league. Although i wished he would challenge his lesions I would have no hesitation letting him perform a second procedure on me.

Best wishes,

Paul.

Thanks Paul for the feedback for Sally,

The theory of not wanting to stir up the devil again by daring to challenge their ablation work and thus perhaps being misled into ablating a few spots that may not have become direct triggers for AFIB is common in EU circles as they are afraid they might be chasing their tails trying to ablate every little blip they see on the voltage mapping board. This is where good EP work and discrimination comes in. Being able to decipher, through vast experience and understanding, which signals are merely reflections perhaps from triggers located elsewhere from where they appear to be ... like the common mistake when EPs misjudge a trigger as coming from someplace within the LA with its actually originating in the LAA which can be tricker to discern the difference between.

But you don't have to ablate every single blip that happens under a significant isoproterenol challenge. For example, Natale has a whole protocol for discerning which blips are real triggers and which are likely not worth messing with that comes from so many thousands of ablations, plus doing enough of those follow up ablations where new sources either not discovered or not elicited originally, or at least not ablated the first time, were found, and from which experience he built up a wealth of understanding of which triggers under challenge are almost sure to become major culprits long term.

Philosophically, it sounds appealing to do the least number of burns you can get away with, but its a false bargain in my book. For every simple case in which a simple single anatomical PVI-only isolation is enough for long term success, there are many others for whom even the PVI itself wasn't done with fully transmural lesions, and though it may have looked like they had full exit block around the PVs at the end of the first ablation, without really challenging it, they will be a lot less sure and often times some of those burn points will reconnect the very same day ( even during the procedure) or in the days or weeks right afterward leading to gaps in the conduction block and more AFIB that has to be ablated again, and that is when you often get a lot of activity. This is in addition to any of the normal blanking period ectopics, flutter, tachy or AFIB runs that comes from the inflammation and irregular healing process during this first couple months after an ablation but that die down with the healing and do not require a follow up ablation.

For sure, even the best like Natale will have a good percentage of people with a fair amount of blanking period activity both from signals that were either held dormant even through the isoproterenol challenge due to anesthesia effects, or that are jumping around temporarily due to the inflammatory process and variable healing rate as discussed. But what you rarely see with a follow up ablation with Natale are reconnections of prior ablated areas. Especially PV isolated viens tend to remain that way with very few reconnections found on follow up ablations.

He does a remarkably thorough job, not perfect by any means, but standard setting in every way, and really challenges those burns with a long 20 to 30 minute period under high dose isoproterenol, and that is just one key contributors, among several, to his excellent success rates.

The impulse and thought to minimize the number of burn is understandable, but its often penny wise and pound foolish in practice when you make doing the least amount you can get a way with and claim exit block at the end of your ablation as a true end point target. Instead a better philosophy is doing exactly as much as needed to get the job thoroughly and solidly done as you possible can with safety while preserving good atrial function and not one burn less than that.

The EP has to understand and know from experience which areas that are active now and that from which he can trigger consistently stable ectopic action from or full blown runs of AF , flutter or tachy during a challenge period with isoproterenol or adenosine, are likely going to become real problems sooner or later after the person leaves your table.

Otherwise, what happens is the too reticent, but well meaning, EP winds up seeing the same person a third, fourth or even fifth or more time as they piece meal ablate only the most obvious triggers at any one moment. By the time they get a more complex case really well sorted out and quiet, the patient in many cases may have endured a whole hand full or more of ablations with the cumulative added risks of each one, the added fluoro time, the major added expense and not to mention the huge toll on the patient from having to go through the whole thing over and over and over and the psychological deflating after number 3 or so and its back again with 'gee another little spot we didn't see last time"

Its probably not buy accident this doing the least amount and avoid the isoproterenol challenge got started in EU countries where they have strict budgets for medical care as they want to cut any cost they possibly can rationalize to cut. That is why some centers don't even use ICE and get by okay for the most part but its not ideal at all. Also, not using isoproterenol seems to save more ablation time and thus cuts costs, but not really when it leads to even more ablations overall. But since ablations are still comparatively inexpensive in UK and EU compared to the US system, they probably figure they have room for more serial ablations if required.

The truth is, even in an extensive ablation when done right by a skilled EP there is little to no functional compromise to atrial function as a result. I'm a perfect example of this fact, having had the whole kitchen sink done in two procedures with Dr N that have been a smashing success for a guy with such highly symptomatic persistent AFIB as I had. And yet, I can exercise at will and have relations with my wife with no problem whatsoever ... really I have little to no restrictions at all.

I'd much rather go that route than have to endure three to five of these things to get one's heart fairly well finally settled down. In the end, the piece meal approach is very likely to result in even more burns required anyway as there are typically more reconnections when not challenged and those are all repeat burns required too, not including addressing the other triggers that we never ferreted out the first or second or third time etc etc.. To me, it just doesn't make sense and it feels more like a group of Docs who took on a given philosophy which sounds reasonable on the surface, but is more like trying to fit a square peg into a round hole.

Anyway, you can tell this one gets my goat. Its all fine and well to shoot for improved technology and procedure toward refining and improving the ablation process which is happening all the time in any event, but its not so smart in my view to set up preconceived ideas of how little one should do, and then try to make the whole process fit that concept while the patient is the one bearing the burden of the excess ablations and too many repeat trips back to the table for piece meal touch-ups at the end of the day.

That all being said, Sally, my understanding is that Dr Schilling is a very good ablationist and an excellent doctor overall, even if I respectfully disagree about the lack of challenging the ablations. In your case, being still paroxysmal is even more in your favor as he is surely able to do a bang up job on a straight forward paroxysmal AFIB ablation and may well do fine with persistent cases using his own methodology and time frame over one, two to three ablations for more challenging cases.

Shannon



Edited 3 time(s). Last edit at 02/21/2014 08:32AM by Shannon.

Hi Shannon

Thanks for restoring my original post! I was very confused about where it had gone before I saw your message.

Hmm... that's not as much as I thought it would cost for an ablation in Bordeaux. But with the resultant loss of earnings from my husband having to take a week off (he's self employed) to come with me, the cost of travel and a hotel for him, I'm really not sure we can manage it. Unless we can borrow the money from a relative.

It does make me wonder how much a private ablation would cost in the UK though...

Incidentally, why is there a 5 day hospital stay in Bordeaux? I thought it was usually an overnight stay for ablations?

I've stopped the arginine and I'm trying cutting out the CoQ10. If you say I could be sensitive to supplements involved with energy metabolism would that include Carnitine and D-Ribose? Carnitine seems to calm my heart a little.

The magnesium ascorbate is my Vitamin C supplement. I take Doctor's Best High Absorption Magnesium Chelate 6x100mg every day. I will look into the B vitamins but already take sublingual B12 (1000mg 3x a week)

I intend to carry on with the functional doctor. I made a decision to fix my health this year and fix it I shall!

Yesterday my GP switched me to Sotalol and I took the first tablet this morning. It's still too early to tell if it will improve matters, but I have my fingers crossed...

Sally

Paul - thanks for your perspective on an ablation with Dr Schilling. It would be helpful to hear more details, thanks! I will PM you later

Did you have the procedure on the NHS or privately?

I can see the arguments for both Dr Schilling's approach as well as the Natale approach. I think on balance it might be better to deal with all the possible problem areas in one ablation. Going through multiple procedures is not something I relish. However, if the cost is prohibitive, then I will settle for a good UK EP, such as Schilling.

Does anybody know the difference in success rates between the 2 approaches?

Thanks

Sally

Hi Sally,

Far more top US EPs use isoproterenol than, on average, do the more conservative group if EU EPs. In EU there are exceptions such as Bordeaux and a god number of The better known Italian EPs , not surprising with the strong influence of Dr N with his countrymen colleagues.

While you really need to compare success rates per number of ablations required from one EP versus another specific EP , the most recent broad survey out of Europe that Karl Heinz Kuck and a host of others groups who like him support using no challenge in the ablation participated in comparing something like 13 to 15 major centers in the EU and found rather disappointing results overall compared to other studies that either included US centers or only US centers in recent years. Its little news that Natale's groups are right at the very top in most every survey along with Bordeax with a modest edge for Natale's PVAI over Bordeauxs Segmental PVI approach for paroxysmal AFIB such as you have but they are both in the same ballpark.

I'm sure Dr Schilling is fully capable of doing solid work with paroxysmal AFIB. Keep in mind that every EP will have a good amount of blanking period breakthroughs that don't necessarily mean needing more ablation will be needed, but the more active the blanking period is the greater the likelihood there will need to be more work done. And every honest EP will, as does Dr N, tell every patient up front that its best to prepare mentally for the possibility of needing two procedures over time to get this really done for good and if you are done in one, then consider it a bonus.

But it's the percentage of paroxysmal cases in particular that need three or more procedures that set apart the most elite like Natale or Jais from those with less skill and confidence. Natale patients from mostly a paroxysmal pool consisting too of a larger number of more complex cases than the typical EP often sees, required approximately 1.4 ablations to end this thing over a full 10 year period! With a final success rate after 10 full years off all drugs and total NSR of 87%! What makes that number so remarkable in this most recent long range study published about the Natale group is that all of those index ablations used in this large study were done from late 2,000 up through January 2002! That is literally still the infant dark ages of ablation technology and understanding, and yet still the very long term ten year results were excellent.

With the big improvements in technology and process over the last 12 years, from Dr Ns group and mostly himself doing the lions share of those ablations were you to start the same study now and fast forward 10 years no doubt the results would be significantly more impressive still. No doubt all the top EPs will hVe a similar relative improvement in there real world stats over time, but so far I have seen no long term studies with as good of results as this latest very long range review of Natale group success.

By no means is all, or even most, of that success due mainly to isoproterenol challenge testing as there are a number of factors involved including the EPs inherent skill with a catheter and overall experience.

However, doing inter-ablation challenge testing of ablations makes all kinds of good sense to me, and not surprisingly the two leading centers in the world use isoproterenol and/or other means of challenge testing at the end of an ablation to improve results and try to minimize reconnections.

Dr Natale recently told me that if an EP can't reliably do a straight forward paroxysmal ablation process with a high degree of long range success while needing a good deal less than 2 procedures on average with an acceptably low rate of reconnections found in those who will need a touch-up ablation, then he or she should not even be doing AFIB ablations, much less persistent cases. Alas, that would rule out a large number of those doing a handful of cases a year that nevertheless still maintance hospital privileges somehow. Hence, why We emphasize here so strongly the wisdom of choosing the best EP that is realistically available to you to do the actual ablation.

In your case Sally, I'd feel pretty darn confident that Dr Schilling can get you over the hump with one or two procedures with your paroxysmal scenario. He is, by all reports, one of the very best in the UK so you are using the right principles in making the choice among those reasonably accessible to you, and could only perhaps add a little more edge in your favor only by going to Bordeaux. However, for a paroxysmal case like yours that distinction might be more or less splitting hairs at this point.

Best wishes, Shannon



Edited 1 time(s). Last edit at 02/18/2014 05:22PM by Shannon.

Thanks for the info, Shannon

I'm leaning towards Prof Schilling I think, although depending on the waiting list for him and finances I may change my mind. (As is a lady's prerogative! Lol! )

Sally

Silentsal,

I believe Prof Schilling has a very good reputation and despite that I know one of his patients who needed three goes at it and still has issues but is generally OK now. The other EP in London I understand is equally or more experienced is Sabine Ernst. A doctor friend of mine was cured of the beast by her in one go.

I am keen to hear about the results of a new vest technology that can pin point to within mm the focal hot spots. It may be a real advancement over the recently touted FIRM initiative.

I've had two minor touch ups since my Jan 2009 PVI. Currently clear of AFIB and playing soccer and other sports but I do get lots of bigeminy and other 'action'. More I think since the Xmas hols. If it is all heading towards another ablation then like everyone I'll need a top EP but hopefully in a few years when vest or other mapping technology as well as pressure sensing technology has improved much more. Next time If there is to be a next time, I want all toxic sources fixed up.

Good luck with your treatment.


Cheers
MikeJ



Edited 1 time(s). Last edit at 02/21/2014 12:38AM by Mikej.

MikeJ

Thanks for your input.

I'll do a bit of research on Sabine Ernst and vest technology before I make my final decision, but I do like Prof Schilling and I've heard a lot of good things about him.

The patient you mention may have been a particularly difficult case? Do you know if they had paroxysmal or persistent / permanent AF?

Thanks

Sally

HI Mike and Sally,'

Dr Ernst is a pretty well known name there in the UK from what I understand, though I am not as familiar with her protocol. Keep in mind that both Dr Schilling and Dr Ernst could easily point to many patients who were 'one and done', so its hard to draw a conclusion from just one or two isolated anecdotes.

With a true paroxysmal case if they had never had any longer episodes approaching 24 hours long and had not have a lot of activity over many years. Then its unusual for such a patient to require 3 procedures and still have some issues with a truly top tier EP, but there are a lot of variables in biology and different bodies and its more a pattern you want to see to get a feel for where a given doc is likely at in the overall scheme of things.

I would not at all be surprised to learn that any EP, no matter how good he is with a catheter and to have more reconnections and somewhat more procedures needed, on average, to get to a real solid long term quiet heart result, than would another equally good EP that also uses isoproterenol challenge and isn't reticent about addressing non-PV triggers who, everything else being equal, is much more likely to require on average a bit less than 2 procedures overall to get the job well down.

But for a paroxysmal case in particular I would have no problem going to an otherwise very experienced EP who still, for what ever reason, doesn't do isoproterenol challenge if that was the best choice you had in your area and couldn't easily justify traveling a long way. Even if it takes say one or two more procedures on average to get the job well done without any challenge, at least you have a very skilled and knowledgeable ablationist wielding the catheter and will likely do a very good job in the long term, even if it turns out to be a little longer process than if you had gone to one of his true peers who also did ISO challenge.

However, for challenging persistent cases, its wise to make a special effort to go the the very best you possible can, period, no matter where you have to travel if that is at all possible for you.

Shannon

Sally, sorry for the delay. Yes the person I know who was treated by Prof Schilling was a persistent afibber so was more difficult to fix I expect. My other Doctor pal treated by Dr Ernst said she insisted on a follow up MRI to check that the lesion set was contiguous. Whilst the proof is in the pudding ie you are either clear of arrhythmia or you are not, it struck me that her 'belt and braces' approach to checking the block was physically created indicates a high level of commitment to getting it right.

Cheers
Mike

Dr Ernst has a very good reputation,

I got a copy of her fully illustrated book with great photos of Cardiac Anatomy for Electrophysiologist which explains all the nitty gritty of cardiac anatomy and all the little structures and chambers we are always discussing here and explains all these parts of the heart anatomy in relationship to their EP connections with ablations and EP studies and diagnosis. Very helpful book for both EPs and anyone who wants to better understand this field.

Shannon

That's interesting Shannon. Even more food for thought if I need to have another touch up in future. She will be on my list even though I am a Brit now living overseas.

MikeJ

Thanks for the info Mike and Shannon

Think I'm pretty set on Prof Schilling for now as my AF is paroxysmal.

I am now wondering whether the bisoprolol was actually making my AF more frequent as it has really settled down on Sotalol 40mg x twice a day. I've only had a few seconds of AF in the past week or so Fingers crossed it stays that way until I can get an ablation...

Sally

Sally I trust you will be a fine with your choice as a paroxsymal case. It can still take a max of two procedures even with paroxysmal simply due to the potential of anesthesia to somewhat suppress certain active triggers during the first ablation, that will be much easier to ferret out in any touch up. But your odds of being one and done are certainly higher as a paroxysmal afibber, and I'm sure Prof Schilling is more than capable of doing a solid job there.

The reason your heart has settled down Sally since switching from Bisoprolol to Sotalol is more likely not because Bisoprolol was triggering more AFIB , but it's rather more likely because Sotalol is both a class 3 Anti-arrhythmic and part beta blocker drug all in one, so you are getting substantial anti-arrhythmic drug effect now too in addition to the beta blocker effect which is all that you got with Bisoprolol.

Shannon



Edited 2 time(s). Last edit at 03/02/2014 05:13PM by Shannon.