I finally had my Telehealth Consult with Natale and Shannon on Monday. Shannon did her homework and had looked over all my records. She was definitely in my corner with the quality of life issues with my arrhythmia. Natale gave me some very valuable advice with the meds, and basically told me that none of them are going to work for my rhythm if nothing has helped up to now. He said to not bother with Tikosyn. He did not seem to think my rhythm should be a big deal, and thankfully, Shannon pushed hard and agreed that I have a very high burden of SVT. Because my arrhythmia is so paroxysmal, he said it is just going to be tough for anyone to ablate, even though that is the only viable option for treating it. So he recommended stressing my heart as much as possible prior to an ablation (stay up all night, drink alcohol, coffee in the am, etc.). Ultimately, though, he said the EP is only as good as what shows on the EP table. If they can't get the rhythm to show, it doesn't do any good to have a top of the line EP. He did say that most EP labs are afraid to use the high doses of Isoproteronol that are needed. All in all, I appreciated the consult. But I'm not sure where to go from here. My current EP has offered to try again. I may consider that.

Follow his advice?

Is your local EP willing to use high doses of isoproterenol? I would get that question answered first. Are you willing to tie one on the night before the procedure?

Megan,

Where my mind goes is to experiment and find a formula that creates your arrhythmia on demand. I realize this would suck, but if you can figure out a formula that works, then you could be confident that you could create the arrhythmia for the time when you schedule your ablation.

The second thought I have & this is on the other side -- making the arrhythmia not happen. How much have you experimented with electrolytes? I say this as both increasing and decreasing consumption of electrolytes has been key to me maintaining relative quiescence in my rhythm. If you are interested, I could expand on my thoughts on this.

George

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MeganMN
He did say that most EP labs are afraid to use the high doses of Isoproteronol that are needed.

Did he explain what the cautions are with using high doses of Isoproteronol?

Thanks for the replies! Carey and George, I will do everything and anything I can to have a successful ablation! George, I would rather not NEED another ablation and would definitely be game for hearing your solutions. I have tried many things, but ultimately, even if I have another ablation, I need to sort out how to keep this from happening in the first place, so I would definitely welcome your experience!!

To Daisy, it sounds like high dose Isoproteronol can come with a risk of a heart attack, which doesn't sound very good. I am really not sure what to think right now.

In terms of trying to successfully create the rhythm, I have several options. Lack of sleep, alcohol, soda or excess coffee, sudafed, a big meal, and stress are all reliable triggers. The problem is that pre-ablation, I wouldn't want to take sudafed, and usually it is nothing to eat or drink after midnight. If my procedure is later in the day, I will try to be sleep deprived,.drink wine the night before, and have a soda and or coffee in the morning.

I would think the risk of heart attack would be for those with significant ischemia. If your cardiac blood supply is not compromised, or close to being compromised, say with a largely obstructed LAD, you'd probably not be a candidate for that kind of challenge. But, if a recent angiogram shows minor deposits here and there, I don't see why isoproterenol would cause a heart attack. Tachycardia, yes, possibly an arrythmia (if things go well for you while they're trying to pinpoint your foci), but I don't see an infarction happening.

I'll be happy to learn otherwise, though. Nothing like learning.

Gloaming is right. The risk of serious complications from isoproterenol is primarily limited to people with compromised cardiac circulation. All it does is raise your heart rate and make your heart more reactive. It doesn't constrict blood flow as many other stimulant drugs do. It's very commonly used in ablations without issue, especially by more experienced EPs. It's pretty much a standard feature in any ablation performed by Natale. He uses it to look for hidden, lurking sources of arrhythmia when the procedure is over and he thinks he's found them all. I wouldn't worry about it.

One interesting alternate approach might be the Nurosym device [nurosym.com] which stimulates the vagus nerve. A similar device, by the same company, was used in the TREAT AF trial [pubmed.ncbi.nlm.nih.gov] and showed great promise in reducing afib burden. It may also be helpful for other arrhythmia's. Neurosym is currently not available in the US, but there are workarounds such as getting it on the secondary market, etc. Considering one myself for a digestive issue, another area where it has shown promise.

Jim

Thanks Jim! I have actually checked out the Nurosym. I have tried another vague nerve stimulator with a TENS unit, without much success, but always willing to look at other options!! I am determined to feel better!!

What do you mean by your arrhythmia being paroxysmal, your SVTs or your Afib? Because when I had my ablation in April I hadn’t had any afib since November but I had svts, not nearly as many as you but runs of them. But he managed to get my afib going for a ‘very short time’. Enough to know what to ablate…although I appreciate our cases may be very different…

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Fuzzyduck
What do you mean by your arrhythmia being paroxysmal, your SVTs or your Afib? Because when I had my ablation in April I hadn’t had any afib since November but I had svts, not nearly as many as you but runs of them. But he managed to get my afib going for a ‘very short time’. Enough to know what to ablate…although I appreciate our cases may be very different…

This touches on a question I have: Natale will confidently do an ablation on an Afib patient who is paroxysmal and seemingly not be be so concerned about being able to generate Afib while they are on the table, though it is obviously a big plus if he can. If you do not go into Afib does he simply ablate the likely suspect areas and hope that will do the trick—obviously doing PVIs and probably a few other areas? With SVT is it harder to pinpoint “likely suspects” than with Afib? Just wondering on the difference in his approach for Megan with her SVTs and those of us who went to him for Afib/flutter ablations.

So I have a specific and rare type of SVT, Atrial Tachycardia. There are three main types. One of the types is when the SA node sends a signal in a circle and at the AV node, it comes back to the SA node. The second kind is when the signal gets looped at the AV Node. My kind, Atrial Tachycardia, is an errant signal somewhere else in the Atria that is also sending a signal. In addition to the SA node. They don't really know where it is coming from, it could be anywhere. Thats why they cannot ablate it unless they can map out where it is coming from. The rhythm also gets blocked some at the AV node, so it is in short bursts. I might get 500 bursts a day, but they might range from 10 seconds, to two minutes, to an hour. They need longer runs to map of out, and it is tough to induce, anesthesia causes it to quiet down, and it could be coming from anywhere in the atria. So he paroxysmal part is that it lasts from seconds to minutes, happens very often, but isn't sustained for hours or days so it is tough to map in an EP lab.

That is why he was basically telling me that no one can fix it if they can't see it,.and that I need to aggressively do whatever I can to help it show itself if I am to have a successful ablation. And also why ablation is the only real solution.

Yeah, atrial tachycardia is the devil. It just doesn't offer any easy ways to stop it.

Daisy, as mine was a straightforward procedure, I was told they would just ablate the pulmonary vein and I think posterior wall. I had an additional minor LAA ablation...

Megan, sorry you are suffering so much with your SVTs. Do you know what triggers it? I know my sister has SVTs and atrial tachycardia ,but unlike you she is able to control it with her meds, however if she eats or drinks sulfites it will set it off. I don't think I would be able to stress my body to set off the arrhythmias the night before a GA, it's hard enough to go under, but to feel off before going in....sounds like you do have a difficult situation. Wishing you all the best with what ever you decide...

Wouldn't it be great if they could keep patients alert during challenging and mapping, and only anesthetize them once the ablation commences. I think most of us are encouraged to go sedation-free during an angiogram, which is sort of the same initial process. But, it's complicated. Some are in AF, as I always was during my angiogram and both ablations (worked up, maybe loss of some sleep, disruption of home routine, etc, since we had to drive 3 hrs and stay over night at a hotel). Some might not be, so it becomes a game of fishing and whack-a-mole. But, if one is best kept alert, and not under, so that the AF manifests, treating the first 30 minutes like an angiogram might not be a bad idea. Trouble is, some patients would not stand up well to all the going's on, commentary, beeps, etc. Maybe even a bit claustrophobic.

I have not identified any specific triggers other than nighttime. It used to start like clockwork every night around 6-8pm. Now it is all the time. I have to be careful with caffeine, cannot drink soda, or take Sudafed, or alcohol, or have stress . haha. But it happens regardless every night. And since January, it is now most of the day as well. I don't think it will be so hard this time to induce. But I will certainly do what I can to aid it along. I suspect that a glass of wine, a poor nights sleep, and a cup of coffee in the morning will do the trick.

As for your.comment, gloaming,.my last EP study/ablation attempt, I had no sedation for the catheterization, two hours of burst pacing, induction attempts,.etc., and it was one of the most traumatic experiences that I have ever had. I won't do it again. It was horrible. I had no sedation at all. This time, they are planning to try to induce medically and map it, then sedate me, introduce the catheters, and then ablate me. We will see. I'm not looking forward to it, but I will literally try almost anything to get this whack a mole whacked.....

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MeganMN
This time, they are planning to try to induce medically and map it, then sedate me, introduce the catheters, and then ablate me.

So do I have this right that they are going to give you isoproterenol while you are awake, map you, then give general anesthesia, introduce the catheters and ablate? While with a straight forward Afib ablation they would give general anesthesia first thing and then give isoproterenol at the end to check for any areas missed? I thought that the mapping process was also done through a catheter, so not sure that I am understanding?

Daisy, yes, it's as you describe....usually. The 'challenge' is at the end, or near it, where they give it your heart an accelerant and put it under stress to see if other foci can be found. My own EP said the last thing he usually does is to cardiovert...which I thought weird, but maybe it's a final step to ensure the heart really is willing to run normally, even with a good solid zap to boot. But Daisy, if I read correctly, was kept awake through her last procedure, which I'm guessing was not your average run-of-the-mill PVI, and I could easily understand, having gone through a simple angiogram, that you'd rather be chewing off one of your fingers than to endure 20, 40, 60, 100, 140 minutes of the team trying to get your heart to settle down into NSR.

The mapping process is done the same way as any cardiac catheterization. They must pierce the septum as always, and then the probe has different forms, but it looks a bit like a tiny umbrella with the staves, or spokes, but no material covering them. The staves have different polarization sensitivity that allows them to detect small voltage potentials local to the probe. When they detect voltage, that's a re-entrant focus that needs to be ablated.

I'm not exactly sure. He wants to induce it first because sometimes introducing the catheters will prevent induction of the Atrial Tachycardia. So he can pinpoint fairly closely where it is coming from before even hitting the EP Lab. I'm not exactly sure,.but I think he is planning to then give me some mild sedation, get the catheters in and then try to induce again,.but if they cannot induce again, they will try to ablate based on p-wave mapping or where the PACs are coming from. They are going to be fairly aggressive with meds and induction attempts. We have nowhere else to go with meds...

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MeganMN
I'm not exactly sure. He wants to induce it first because sometimes introducing the catheters will prevent induction of the Atrial Tachycardia. So he can pinpoint fairly closely where it is coming from before even hitting the EP Lab. I'm not exactly sure,.but I think he is planning to then give me some mild sedation, get the catheters in and then try to induce again,.but if they cannot induce again, they will try to ablate based on p-wave mapping or where the PACs are coming from. They are going to be fairly aggressive with meds and induction attempts. We have nowhere else to go with meds...

That is what I am wondering—how would he pinpoint where it is coming from before hitting the EP lab and putting in a mapping catheter? Before you enter the lab, you are in a prep room which only has ECG and the ability to do TEEs as I remember, though you do meet with the anesthesiologist there and I’d think they could give you isoproterenol there if that is what he wants to do. Or, they could take you into the lab early (I think they gave about 6 of them) and start the process there. Once you get to the lab they slap on a bunch of different patches that I think are involved in mapping. Do you have access to Shannon to ask more questions on the particulars of the plan? That could help you plan your pre-ablation cardiac stressing.

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MeganMN
George, I would rather not NEED another ablation and would definitely be game for hearing your solutions. I have tried many things, but ultimately, even if I have another ablation, I need to sort out how to keep this from happening in the first place, so I would definitely welcome your experience!!

Sorry for a tardy response. I'm traveling at the moment. Here are some thoughts:

Electrolytes have been key for me for managing my afib for nearly 20 years. In addition to dialing back exercise intensity for long duration exercise, which is a trigger for me, supplementing with potassium, magnesium and taurine have been key. In my case, I put 2 tsp potassium citrate (about 4 g of potassium) in around a liter of water and consume over the day (my version of timed release, as a bolus of potassium will get quickly excreted by a healthy kidney), I also consume magnesium to near bowel tolerance (which is absurdly high for me). I've found any magnesium will do for me, as long as I consume enough. Taurine also seems to be key. I take 1/2-1 tsp/day of powder, which is about 2-4 g/day. This did me well for about 8 years. Then, associated with a divorce, my control got much worse. I thought it was divorce stress, but after a year, I hypothesized it was excess calcium from stress eating wheels of brie daily. I quit the cheese (the only dairy I was consuming) and control went back to pre-divorce. More recently, my control also got materially worse, and I was getting tachycardia, which I never do. After thinking my situation was just progressing, I looked and it turned out I'd started taking a different brand of vitamin C after the 1g pills I was taking ran out. This was a jar that happened to be in a cupboard. I did this for a number of weeks with the increased tachy and afib. I happened to look at the nutrition info on the container and each pill of 1 g C also had 100 mg of calcium & I was taking 3. I instantly quit those pills and haven't had afib or tachy since. Hence calcium seems to be an issue for me. I'm guessing I get 400-500 mg of Ca/day through food without the supplements.

Carolyn Dean MD, who is a magnesium advocate has a book on electrolytes, including Mg, Ca and taurine. My program and hers generally track, when looked at from a distance.

A guy who has posted here, Steve Carr, also has found that Ca was an issue & magnesium hindered rather than helped. This link goes to post of mine that links some of his info. Interestingly, he's found more recently that consuming large quantities of grocery store mushrooms has allowed him to increase his Ca intake to 1000-1500 mg/day, depending on the mushroom quantity.

Lastly, I recently got an email from a member here about his experiences with taurine and ginger:

The two things I haven’t stopped taking to this day is taurine and ginger extract with 5% gingerols, both by NOW. I know you’ve experimented with both but have you ever done therapeutic dosages?, when all else failed, ginger extract at around 2 grams would settle my heart within 30 minutes if taken on empty stomach. Taurine on the other hand helped do the same thing but once I increased it to 10 grams as an experiment I realized the full effect and started taking both at the same time.

Basically I used to take 2 grams of ginger with 4 grams of taurine three times a day and after a couple of days ectopic episodes stopped altogether. I was so happy to find the combo that works that I continued this for almost 6 months and my entire vagal response and stomach acid responded differently to same triggers. It was almost as if I had an ablation but without the scars and my body seized to get provoked by usual triggers.

As a preemptive measure, I still take 2 grams of ginger and 6 grams of taurine daily twice a day. It thins my blood and taurine helps me age better. I’m sure you’ve seen the recent research about taurine‘s regenerative benefits and extending lifespan.

I can assure that neither of those supplements at those dosages will do you any harm and if you try it for a few days or at least a week, it might just work, worth exploring in my opinion.

So I would increase taurine to at least 10-12 grams a day which is considered normal intake in standard Japanese diet. Plus consider that you’ll never absorb the whole 10 grams, the older you get the worst your absorption gets, most likely closer to 50-70% on an empty stomach is absorbed.


A friend in town, was getting tons of PAC's and he increased his taurine to 4g/day (from memory) and they've pretty much gone away. He also takes magnesium and potassium.

One caveat, any discussion of electrolyte supplementation should mention that it is contraindicated if you don't have normal kidney function.

Best,

George

Obviously I will have to ask she more questions about the plan. Thanks everyone!

On a similar note, I have done some reading and discovered that Isoproteronol can severely deplete Arginine and Taurine, which I found super interesting. I will take a look at that book and look into starting a regimine. I have the ginger, and taurine already. What type of potassium/magnesium do you use?

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MeganMN
On a similar note, I have done some reading and discovered that Isoproteronol can severely deplete Arginine and Taurine, which I found super interesting. I will take a look at that book and look into starting a regimine. I have the ginger, and taurine already. What type of potassium/magnesium do you use?

My friend who increased his taurine to 4g/day had been taking around 250 mg/day. He'd been an afibber for 20 years, like me. For whatever reason, the afib had gone dormant and he was just getting lots of PACs. He'd even gotten a telehealth appointment with Dr. Natale for a potential ablation. The we figured out it was only PAC's and I encouraged him to up the taurine. I think he went to 1g/day and things got better, so he went to 2g & then 4. We chatted a month or so ago and everything was still good. The taurine I use is the NOW brand powder.

In my case, in 2005 I was figuring out what my protocol should be. I'd proposed it in outline form to the EP, but while he told me to go for it, he gave no suggestions about dosage, except to take B6 with the magnesium. I later learned that P-5-P is the better form of B6. What I was doing was using a recording beat to beat heart rate monitor while meditating in the morning. While meditating so I would not get movement artefact in the data. My hypothesis was that dosing to minimize PACs & PVCs (I could tell the difference in the heart rate data) would be an indicator of how to dose. I was doing well, around 4 months after my previous episode, which was a month after my 2.5 month episode and had one. I didn't pay a lot of attention, and then had another one a month later. Thought about it and wondered what I was doing differently. Realized I'd been taking taurine and ran out and didn't replace it as I thought it wasn't doing anything. Started taking it again and had a two year period with no episodes. I was foolish enough at that point to think I was "cured" and why was I taking all these supplements. I quit them and had afib within 24-48 hours, don't recall now, but it was quick. At the this time and when the afib started, I was and had been for a long time, eating a vegan diet. Two things about that, it could have caused low taurine and excess calcium was not an issue as I was eating no dairy. Hence taurine at 2-4 g/day (1/2 to 1 tsp of the powder) has been a feature of my supplement stack since. I've taken the NOW brand powder as well as some of the generic bulk brands sold in large quantities.

The potassium I take is potassium citrate powder. My understanding is that the citrate form is more like what you'd get in food. It is also easy on the stomach, while chloride can be hard on it. I used to take the chloride form and it would trigger TSA screening in the airport and they'd have to to a chemical scan on it. They also told me not to bring more than a few ounces of chloride in carry on luggage. For the citrate, I've not found differences between brands of this. This is what I've been using and I'm pretty sure they sell smaller sizes as well.

For magnesium, I think the glycinate is always a safe choice. Member Jackie here always liked the TRAACS branded from the manufacturer, Albion. Albion sells to other supplement companies and the NOW brand uses it as do others. In 2010, I started also using the di-magnesium malate form. As I take so much, I found a lady who uses an Albion human formulation in what she sells for horses. They don't market it for humans, but I did have a phone conversation with her in 2010 about her product (their order system used to ask me the name of my horse!). I buy her largest package in powder (NOT pellet) form. I do use a dose around what she recommends for horses. I also use magnesium chloride in the form of Nigari (which is used in Japan to coagulate tofu). I purchase it in 20 kg bags (44 #), which is the only size the importer now sells. I don't think the mix of what I do now is important as I've used every form there is, including oxide, which is supposed to be least bioavailable.

The late Erling Waller (member here & passed in his 90's a couple of years ago) worked with member Jackie to create a magnesium bicarbonate water recipe. The idea was to consume a dilute form of the water over the day. Here is the dilute bicarbonate liquid recipe.

Here are some more bicarb posts that trace the history of the idea from Australia, where bicarb water occurred naturally and was bottled:

[www.afibbers.org]
[www.afibbers.org]
[www.afibbers.org]
[www.afibbers.org]

This is a post on acetate, created from 2 TBL milk of magnesia (pure, only magnesium hydroxide & water) + 8 TBL vinegar (I use organic apple cider vinegar). This will convert to bicarbonate in the body. There is a link in this post to a document created by engineer George Goble who went by ghg on the forum.

I've done both the bicarb & the acetate, but as the powders take less time, don't commonly do them on a regular basis. This being said, Erling (another engineer) credited consuming the bicarb water with keeping his afib at bay for a long time. He thought the abundance of calcium in the tap water where he lived and the lack of magnesium could have been an issue with the start of afib for him. We happened to live in the same area for a while and actually had lunch together once or twice.

Lastly, magnesium is sometimes called, "nature's calcium channel blocker."



Edited 1 time(s). Last edit at 05/05/2024 01:57PM by GeorgeN.

I have been interested in taurine for a variety of reasons, including tinnitus. This is a good article from the Cleveland Clinic, which supports the dose that @GeorgeN is taking. [www.ccjm.org]

Another one form Cleveland Clinic for non-medical readers [health.clevelandclinic.org]

My main concern is that it is a cytochrome P450 enzyme inhibitor

Zumpano explains that taurine works as a cytochrome P-450 enzyme inhibitor.

“That means that taurine interferes with medications that rely on this enzyme to metabolize drugs,” she clarifies. And the medications in question are pretty darned important — we’re talking about antidepressants, antiseizure drugs, blood thinners (anticoagulants) and statins.

ButTaurine doesn’t inhibit not all aspects of P450, only P450 3A4. You can look up different medications to see how they are metabolized and while 3A4 is any important one, many drugs are metabolized by 2D6.

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The cytochrome P450 2D6 (CYP2D6) is an enzyme of great historical importance for pharmacogenetics and is now thought to be involved in the metabolism of up to 25% of the drugs that are in common use in the clinic

[www.ncbi.nlm.nih.gov]

I became aware of this after getting pharmacogenetic testing and discovering that I am a poor metabolizer of CYP2D6.

I got the pharmacogenetic testing as well, Daisy. It was fascinating! I discovered I am a rapid metabolizer of caffeine and the beta blockers (propranolol, etc). Super interesting.

Windyshores, I've been taking taurine for a few months now- another bit of great advice from George. My tinnitus is gone, and my fib is almost nonexistent. Only on big stress days do I get a few blips.It has also let me lower my magnesium to 400mg a day, from 600, taken 100 mg at a time through the day. I realize I'm not cured but I am hoping it was just another symptom of covid- going from 24/7 since 2020 down to blips at the present. Fingers crossed.

I have also been having some success with the taurine! If I take it in the morning, it dampens my daytime ectopy significantly, but doesn't seem to help at night. I am still trying to sort that out!