Recently diagnosed - have questions

Hello, i am new to the forum. I was recently diagnosed with afib - vagally mediated. I am still sorting through all the research, including the material on this site, but was wondering if folks could help me with a few questions to speed up the process?

- I am looking for recommendations for an EP in the San Francisco Bay Area. I have had Dr. Scheinman and a few others at UCSF recommended and Dr. Natale. I am looking for one that is very experienced with ablations as it is a possibility that i am headed in that direction. However, i am also looking for one that is willing to help investigate/rule out other causes of the afib prior to resorting to an ablation or years on drugs (not an acceptable option for me). Ideally this would be one person, but i suspect it may take two. 5 years ago i had heart palpitations (among other symptoms) due to a b12 deficiency that went away once treated with supplements so it seems reasonable to follow-up on the b12 and other potential deficiency's.

- Given my history of the b12 deficiency along with ibs/dairy intolerance it seems reasonable to pursue the Mg deficiency. I have read about the EXA test. I have an appointment with an internal medicine dr. in a few weeks and plan to inquire about this test. I was wondering if this is a test dr's will be familiar with and open to requesting?

- i have increased my intake of Mg rich foods, but have been hesitant to take supplements. What are the potential risks if i don't have a Mg deficiency? Are there interactions with other drugs (i am presently take flecainide)? How much should i be concerned about the balance between Mg, K, and Ca? I tend to be quite sensitive to drugs and supplements. Note: I already eat a very healthy diet.

- Lastly, can afib cause headaches? I have not received a clear answer from my cardiologist. I have never been a headache person and recently started getting them routinely.

thank you!!!

Without question Natale is your best choice. He is one of the best ablation specialist in the world and you will find many happy customers here in this forum. I highly respect your UCSF doctors for recommending him since they could have easily suggested you stay within the UCSF system.

I didn't want to wait for Natale so I went with Steven Hao at CPMC.

In my opinion, along with fish oil, magnesium supplementation is among the least problematic of the "natural" treatments. Many of us could use more magnesium, soil depletion in farming means we're not getting as much in food as in earlier eras. Same with omega-3 fatty acids, found in fish oil -- but due to factory farming and reliance on corn feed for animals instead of grass.

Start with a low dose of magnesium (I suggest 50mg), see how you do, and gradually add to it. Your body has a built-in dumping mechanism if you take too much -- diarrhea. If you get this, dial back immediately.

______________
Lone paroxysmal vagal atrial fibrillation. Age 62, female, no risk factors. Autonomic instability since severe Paxil withdrawal in 2004, including extreme sensitivity to neuro-active drugs, supplements, foods. Monthly tachycardia started 1/11, happened only at night, during sleep, or when waking, bouts of 5-15 hours. Changed to afib about a year ago, same pattern. Frequency increased over last 6 months, apparently with sensitivity to more triggers. Ablation 6/27/13 by Steven Hao.

I have vagal afib, am on flec, and am at 1000 mg magnesium. No interaction. Headaches: could be secondary to a number of issues. During afib, there is about a 25% drop in oxygenated blood to the brain (along with other major organs). I sometimes get a mild HA as part of my afib "hangover" after an episode ends and I convert back to NSR.

Hi all,

I am new to the forum as well. I am here for my husband who was also recently diagnosed with Afib, around the beginning of October. I would first like to say to LAKE, that my husband also has had headaches. They began when his afib episode started, and continued to shortly beyond converting back to NSR, which took 2 weeks and occurred after I started giving him magnesium. We had one more trip to the ER then and the EKG showed he was no longer in afib, but had a different arrhythmia, bradycardia with junctional escape. That resolved on it's own while in the ER. Echos are normal as are his cardiac enzymes. He did have elevated liver enzymes at that time as well as low platelet count, but 2 weeks before afib both were normal.

I am well versed with nutrition and had seen this forum in the past, so when he was diagnosed, this is the first place I began to look for info, since I believe in alternative medicine and don't like him being on warfarin, metoprolol, amlodipine, plavix, crestor, and benicar hct. They did an angiogram after he was put in the hospital and found an artery 90% blocked, so put in a stent. This is unrelated to the afib, but having been 90% blocked, after stenting he should have felt enormously better. He did not. He is still so fatigued and gets very groggy like he's on heavy duty drugs.

This makes no sense since he has been in NSR for a month and has no blockages now. Something else has to be wrong. I don't think he has vagal afib and no Dr has said so. I know about the balance with cal/mag and the interplay with potassium. He has time release K that he is supposed to be taking with his benicar since it has a diuretic in it, and he wasn't taking it. I told him to take the K with Slow-Mag, and initially he was taking a cal/mag supplement too so as not to create a cal/mag imbalance.

After reading on here that quite a few people have sensitivity to the supplements and drugs and have to go easy with them, I have to wonder if there is something that is being missed in all of this. I can't help wondering if hyperparathyroidism is at least partly the cause since it causes high blood calcium, which would perturb the magnesium and potassium homeostasis. Also, according to the symptoms on parathyroid.com, arrhythmias and Afib are caused by it. He has most of the symptoms listed on that site. One symptom is elevated liver enzymes. And since the liver has to detoxify all drugs and other substances by way of the first pass effect, maybe those who are sensitives have sub par liver function. Either that or they may have acidosis or alkalosis, causing transcellular shifts of the electrolytes in and out of the cells. Under acidosis, potassium and magnesium leave the cells and are excreted in the urine. Alkalosis causes potassium and magnesium to enter the cells, causing hypokalemia.

Any thoughts or insights? Has anyone here been diagnosed with hyperparathyroidism?

Hi:

I didn't have Hyperparathyroidism but I was diagnosed with an elevated parathyroidism, my holistic doctor told me to take vitamin D, which I did and it is now normal. I googled Hyperparathyroidism and you bet it can make you ill, there are several clinics in Florida that operate, it is supposed to be very simple, doesn't take long and cures the problem.

Liz

Hi Elizabeth,

Thank you for your response. I'm not sure what you mean about being "diagnosed with an elevated parathyroidism". I assume you mean you had an elevated level of parathyroid hormone (PTH). Hi PTH can be an indicator of hyperparathyroidism, caused by a hormone secreting tumor in one or more of the glands. It can also be an indicator low calcium and of vitamin D deficiency. This again would relate to magnesium status, since calcium and magnesium must be present in the proper amounts and ratio. You may need calcium and magnesium along with the vitamin D your Dr prescribed. I suspect that this is also what my husband needs. It may not be actual hyperparathyroidism, but a deficiency of those 3 vital nutrients. When testing PTH, it is also necessary to check those 3 nutrient levels too.

I saw several of those parathryoid clinics in Florida online several years ago. I was researching hyperparathyroidism then because I felt he had the symptoms of it. I will ask my alternative medicine Dr to do the blood tests. Thanks again,

Rosie

Rosie:

My Holistic doctor found my parathyroid to be slightly elevated, my calcium levels were fine, most on this board have said that it is easy to take care of a elevated parathyroid by taking vitamin d, I was a little low in my D levels. I do take magnesium, but I wasn't taking Vit D., I live in the Northern part of the U.S. so there are months where we get very little sunshine which is vit. D. You are correct about a tumor, I evidently did not have that as my levels of the parathyroid are fine now.

Liz

Lake - you aren't likely to get your intracellular levels of magnesium where they need to be without supplements. If you have healthy kidney function, you can certainly begin that process which will be helpful overall whether or not you eventually sign up for an ablation. Magnesium deficiency is common and especially so in afibbers. The Magnesium Absorption report explains about which magnesium supplements to use and how much to take etc.

Read more here:
Magnesium Absorption
[www.afibbers.org]

The Strategy - What Metabolic Cardiology Means to Afibbers
[www.afibbers.org]

Conference Room Session 72
Potassium/Sodium Ratio in Atrial Fibrillation (February 7 - June 11, 2011)
[www.afibbers.org]

Jackie

Liz,

Thanks for the clarification. We also live in the northern part of the country, far northern Illinois. So we don't get much sunshine either. And since my husband hasn't been well for several years due to other health issues, he doesn't get out much during the summer anymore. You mentioned others on the forum saying they took care of elevated parathyroid with vitamin D also. I did a search for that subject in the forum before posting, but it showed no results. That's why I mentioned it here. I did see many posts though where people said that vitamin D is part of their protocol.

Rosie

Rosie,

I would suggest that your husband asks his doctor for a test to determine his level of vitamin D3 (25(OH)D3). You can read more about the importance of vitamin D here [www.yourhealthbase.com]

Hans

Thanks everyone for you feedback.

I just started Mg supplements this weekend - a low dose that i will steadily increase.

I am still researching EPs in the San Francisco area. One thing to clarify is that i am considering both UCSF and CPMC (natale's group). I have received lost of positive feedback CPMC. However, i would't be able to even get an initial appointment until late january. I can get into UCSF much sooner so was wondering if anyone could recommend specific EP(s) there (or elsewhere in the bay area). Natale seems to be considered 'the best'. However, if i can find someone that is really really good (just below the best) and that i could see sooner i think that would be the 'best' for my situation.

thank you!!!

Vitamin D is a controversial supplement but I use it.
As to Magnesium... I sat and watched a fellow convert from aFib to NSR after IV Magnesium while starting Tikosyn. First pill. Whammo. NSR. I had the same IV Magnesium, etc., and took TIKOSYN for three days but it took electrocardioversion to get my heart back to NSR (never felt the procedure at all) and have been on TIKOSYN and in NSR since Dec 2011. It will be two years next month. The side effects are starting to bug me and affect quality of life so I cannot wait for an ablation - when my LA shrinks a bit more.

The other supplement that I use religiously is Potassium. Else my Potassium is always low when tested. I take up to 4 grams of Potassium during the day in the form of Low Sodium V8 (each 16oz beer cup contains about 1.6 grams) and through using Potassium Gluconate powder (Now brand from iHerb) which I dissolve in Seltzer water. Two tablespoons supplies about 1.6 grams. If I do not supplement the Potassium I find that I have skipped heartbeats and chest 'pressure' during that time a couple of times a day. And if I notice skipped heartbeats and take a beercup full of seltzer water and Potassium Gluconate (two tbspn) it takes only about 20 minutes until things are sorted out.

I highly recommend Vitamin D, especially if you are not getting sufficient via plain old sunshine. Somewhere on the forum you will find a list of what I supplement. I take Metformin for Type 2 Diabetes which depletes Potassium; and I must watch my Potassium levels especially carefully when taking my full dose of Metformin versus cutting down on it due to low blood sugar when I am eating properly.

Murray L

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Tikosyn uptake Dec 2011 500ug b.i.d. NSR since!
Herein lies opinion, not professional advice, which all are well advised to seek.

Murray the amount of Potassium you are taking seems excessive. Obviously it is working for you, but for someone with renal issues these levels might be toxic.

Ron

Murray, Did you make a mistake in your Potassium Gluconate dose?

2 tbspn (U.S.) = 6 tsp = 3.24 grams Elemental Potassium.

Sam

Lake
I have learned from this site and other sites that one should see as many EP's as possible so that you can make a decision based on your comfort level. So while Dr Natale's name is extensively (maybe almost exclusively) mentioned, there are also many others.
I would also consider having an EP who has a permanent location as he/she is going to be more available to you. Dr Natale who is a skilled, personable, caring physician, has many locations. And I will probably take lots of flak for this one, but it seems that all he does are ablations and not other treatments for afib/arrhythmias-- and it seems that unless you are Shannon (for one) there is no on-going relationship with him as your cardio/EP.

Then again, perhaps, that does not matter in the long run.

Karen

Karen,

First of all, while Dr N, is obviously a very busy ablation EP, he doesn't exclusively do ablations. He does full consults with ever patient and if he feels you are better off not doing an ablation now he will advise that and prescribe drugs or whatever is appropriate for the situation. He also does Lariats and Watchman installations as well, and if you live near him or are willing to travel too for your follow up visits he is definitely a caring and available normal EP there to manage your arrhythmia and cardiac issues.

And while its true most people arrive at Natale's door already per vetted and ready for the most part for an ablation, I can't think of another person on the planet who I would rather seek out for consultation on any EP related issues as he is so familiar and skilled in all the nuances of this field and his specialty that it makes him almost uniquely qualified for assessing the full merits of all the possible options.

An otherwise excellent physician who knows AC drugs issues well and is very up to speed on AFIB overall, but who doesn' have nearly the vast hands-on experience in successfully treating the most difficult cases as Dr N does, as well as in knowing instinctively when it might be best to avoid ablation for the time being, and also knows the ins and outs of Lariat/Watchman and AAR and AC drugs as well as all the rate control dugs too, is hard to top just for a general consult to fully understand your realistic options.

However, the single most important factor in choosing an EP to do your ablation is not who has the most time spend with us, or be there for us at the drop of a hat. That is an important function, for sure, and is a role that can be very well served by many well trained EPs or even good Cardios that live near us ... though I would opt first for an EP who has a good understanding of ablations, and perhaps even does some ablation work themselves and is moving up the learning cure.

But making your choice for an ablation EP is a different kettle of fish altogether and making the choice based on mostly easy access too as well as who can spend loads of time with you and make us feel very comfortable with, often times are mutually exclusive to the first priority and that is having the most skilled possible hands guiding your catheter during the critical 3 to 4 hours of your index or follow-up ablation.

There are many wonderful Docs and EPs who you can make your regular maintenance EP and who will gladly work in concert and in consolation with Dr Natale if you have to travel some to get an ablation with Dr N. But very many of these really great guys or gals with wonderful bed side manner, you should absolutely not in a million years want to do your ablation!

That is a huge distinction that is a very key thing to getting clear about. Yes indeed, there is fortunately a continually growing list of very skilled ablationists in all parts of the country and that situation will continue to improve going forward, no doubt. Its not hard to find a good EP with a decent chance to do a good job by you for simply paroxysmal cases.

And yet, Dr Natale as most everyone who has seen him for ablation will attest too, is also a very kind and caring EP who is devoted to his patients care and follow up, even if he can't be there for easy access for each person after the ablation process is completed over several months under his wing. You can see him for follow ups if you can afford to travel, but if you don't live in one of his center areas, its still wise to also set up with a local EP/Cardio who will then team up with Natale by phone and fax to give you the overall best quality care you seek.

My view is that if you really can't travel to see Dr Natale, or another recognized top tier EP, or at least one of his top colleagues that was mentored by Dr N and who are also all highly trained ablationists in their own right, then seek out the very best and most skilled ablationist in your regional area that you can possibly have access too.

However, do not make the mistake of forgoing on the best ablationist you can find simply because you feel more comfortable going with the guy around the corner with a nice demeanor and an easy schedule.

My sister did that and went to an EP who was lauded by several other Cardios and EPs in Houston as the best in area and who was then, and maybe still is, head of the hospital AFIB department and yet who butchered her in a full nine hour persistent AFIB ablation ( that was a big red flag he was in over his head going 9 hours!!) that left her in worse symptomatic AFIB leading to a soon to occur debilitating stroke that left her bed ridden almost 4 years later to this day!

Several months before her ablation I had begged her to drive the short three hours from Houston to Austin to see Natale and who she had met just a year earlier when she came for my first ablation with Dr N for my own persistent AFIB, which he stopped in its tracks in one 4hr and 20minute procedure. I haven't had one blip of AFIB in 5.5 years now.

My sister told me then "of course she would go to Natale", but she is kind of a home body too, bless her, and when her local docs in Houston and her Cardio at Hermann Med Center were lauding this great new AFIB ablation expert with just at 600 ablations under his belt as the new director of the AFIB center she was referred too in Houston, and urging her to go to him, it appealed to her not wanting to travel, even to Austin around the corner. So she went for it with this guy in Houston without me even knowing as I was back in Amsterdam at the time and didn't learn of her ablation until after it was over.

My sister met with the EP before hand and really loved his bedside manner and confidence (yet she overlooked my warning about going to people with less than 1,000 ablations under their belt)

It turns out my sister isn't the first person to have a bad outcome with this fellow ... in fact its become a bit of a pattern with that EP from all reports ... and yet an EP who came with big fanfare from several local cardiologist and other doctors she knew singing his praised as a 'respected and highly recommended ablationist and the best anywhere around'. The Cardio who recommended the EP was also a high up guy in the medical center and he swore by this EP and yet this wasn't just a case of an isolated unfortunate outcome which might very rarely happen to anyone, even a top EP, but it was a wrong call all around with too many unfortunate outcomes to be just a bad hair day for an other wise highly competent AFIB ablation EP.

Another personal example, my local EP in the islands for many years I really enjoy as a Doc and we have had great conversations and he even encouraged me long ago to go to either Natale or Haissaguerre in France when he realize my AFIB needed their level of care, and he is regarded as a top EP in the Aloha state. And yet, I never ever considered doing an ablation with him regardless of my fondness for him in our interactions as it was clear he lacked the kind of experience necessary to be great in this challenging area.

Alas, one of our posters here went to him for a persistent AFIB ablation a couple years ago and woke up in the medical center's Cardio ICU after having had his chest cracked twice due to having his mitral valve being ripped out during the ablation, requiring emergency valve replacement surgery!!! He was in ICU for two months followed by 6 months of Cardiac Rehab!

Ironically this gentleman had originally scheduled to do that ablation with Natale but figured that he could save a couple months time by letting the locally respected EP take a crack at it whose own center was doing more and more ablations right there in the islands. He felt, and I can certainly understand the thinking, that at worse case if it failed he could still make his already set appointment with Natale four months later in Austin and get it finished up and fixed up then. Sounds like a reasonable and rational plan to me too. But disaster happened largely due to an under experienced EP who meant well but in was over his head.

Fortunately, our poster from the islands who went through such an ordeal finally did get his ablation finished by Dr Natale this past early summer and is doing well the last time we communicated and is very grateful he finally made it to his original excellent choice.

I felt terrible for both him as the patient and the EP, who from knowing him too must have been mortified.

This is why I am so adamant about everyone doing your due diligence and make sure to set your target as high as you can afford and have reasonable access too and don't just settle for a good local recommendation and a friendly demeanor alone unless you have a LARGE BODY OF EVIDENCE that there is real skill and consistency in results from your prospective ablation EP that go along with those other more warm and fuzzy attributes.

Once you make that decision to shoot for the best person that you can arrange and not let a potential 5 days of travel be a barrier, you will tend to find that your target list of candidates suddenly gets much more elite and with more stringent requirements.

Remember you are not, first and foremost, looking for your ongoing maintenance EP. Sometimes, if a really top EP lives in your area they can be one and the same and thats a bonus in saving some airfare and a hotel expense for a few days, but assuming you can afford it, its usually a relatively minor issue to go wherever you need to to get the best person you can or at least one you feel totally comfortable with after in-depth vetting process to do the actual ablation, and then work with a good local EP or Cardio for follow up care after the blanking period is over post ablation and the ablation EP releases you back into your local doctor's hands.

Anyway, its your heart so choose wisely and don't be too quick to settle for local convenience even if a bunch of local docs think highly of them. Try for a broader regional, national, or best yet international reputation for excellence for putting the odds most in your favor up front.

Shannon



Edited 3 time(s). Last edit at 11/27/2013 10:06AM by Shannon.

Shannon,

As always, well said!!!

George

My cheeks are definitely red and my ears have been thoroughly boxed and that footprint on my back end will last for some time


Happy Thanksgiving to you and yours and all on this site.


Karen

Shannon--there was no offense meant toward you or Dr Natale--just stating observed fact and opinion.



Edited 1 time(s). Last edit at 11/27/2013 07:40PM by Kakora.

Hi Karen,

Happy thanksgiving to you as well! And no worries at all Karen, I didn't feel in any way that you were being offensive whatsoever to either me or Dr N. ... Far from it.

Please understand, when I write these replies to given threads, I take whatever points, comments or questions from any of these posts that make for a good discussion and try to respond while always being aware of how many relatively new people are on this board at anyone time who are just now trying to get their bearings in what is often a confusing and stressful landscape early on, and who are trying to get a feel for how best to proceed for themselves.

In any event, it was perfectly clear from the start that your comments were very well meaning across the board and not at all meant as derogatory in the slightest.

Two of your comments as well simply served as a good reference point to underscore my strong feeling and experience that making it too high of a priority to find a local ablation EP who is close at hand and easy to see and can always be right there for you, as appealing as that certainly sounds, is not always the best way to go when it comes to making your choice for ablationist.

I agree, it seems perfectly logical and makes sense, as you noted Karen, to want to seek out an EP for your ablation who can be by your side whenever you wish to see him or her and who you can see quickly as needed. However, the point I was making is simply that this person, in my view, should be your on-going maintenance EP or Cardio and not necessarily that same EP that does your actual your ablation.

If you are lucky enough to live near a top gun ablationist then they can be one and the same for sure, but for most of us, that is not the case and if you wish to have the greatest amount of comfort and reassurance up front as to the quality of the hands holding your catheter, then going with a team approach makes great sense and works very well indeed as so many of us here have discovered for ourselves. Some, alas, even through the school of hard knocks..

By making convenience and ready access a more important priority than it really is in this case, where the skill and hands-on experience demands are so high as they are in order to excel in this complex procedure, that is where people can sometimes get into trouble.
inadvertently. When any of these ablationist's skill and experience evolves above the average level and they start to become known over a wider circle for their talent, then their waiting lists also will tend to expand similarly to Natale's and other elite operators who are in such demand from patients all over the country and world.

And yet, the truth is, only a vanishing few of all afibbers in need of an ablation will ever actually make it to a Natale, Haissguerre, Jais etc etc, Nonetheless, by focusing their attention on such a high standard, and encouraging people to demand the best doc that any individual can realistically arrange for themselves, my feeling is that a lot more will eventually make the effort needed to find a really good ablationist in their area at the least, and not give in too easily just to the simple and convenient 'local guy; with 400 ablations who comes with a 'thumbs up' recommendation from another local Cardio or GP without also doing a better job of also vetting the doc and reassuring themselves that they should feel confident and comfortable with their prospetive ablationists' track record. And thus, hopefully avoid the very difficult and painful experiences of people like my sister and our poster friend from Hawaii as just two examples.

The other point you mentioned was the unlikelihood of Natale being there for anyone, beside me, after an ablation and yet many of his patients like myself, make a point to travel to see him periodically for important or milestone follow-ups and maintain an ongoing and growing relationship with him that way, and then we see a good local EP or Cardio as well for routine check ups, or as in my case to have routine pacemaker readings. In any event, its great to have both and to make sure that your local doc stays in touch with Natale and vice versa.

That's a win-win scenario hands down in my book.

So please, Karen, don't in any way feel that 'your ears were boxed' in the slightest! Nothing of the sort ever crossed my mind while writing my reply and my apologies if something I said may have given you that impression.

I realize I tend to be rather direct, and maybe a little blunt for some folk's taste, about some of the issues I feel strongly about and have had a lot of experience in dealing with, but my replies are never offered with 'a boot to the rear end' or to make anyone feel embarrassed in any way for making a comment or asking a question ... least of all what you first wrote above!

Rest assured you can let it all go and not worry at all about any such thing. In my book there is no such thing as a wrong or inappropriate question or comment in such a forum where we all are trying to sort this out from our on experiences of living with this lousy condition and the more voices and views heard the better as a launching point for some of us old timers to help throw in our two cents and maybe help someone else avoid having to reinvent the wheel along the way.

Enjoy your Holiday too Karen.

Best, Shannon



Edited 1 time(s). Last edit at 11/28/2013 01:35AM by Shannon.