Concerned about VT and waiting for ablation consult

From Nov. 29 to Dec. 13, my cardiologist ordered a Cardionet MCOT heart monitor for a two week period for me because I had been having more frequent afib and almost constant palpations that left me out of breath, with weak arms and legs, light-headed, and off balance. I had been on Flecanide 50mg twice a day , and had been taking all the supplements suggested by The Strategy Report, and had been doing fine for over a year. But starting in June 2013, the Flecanide was not helping to stop the arrhythmia, so my doctor took me off it in September and did not replace it with another med.

On Sat., Dec. 7, the Cardionet monitor showed I had at least two episodes of ventricular tachycardia on top of afib. My cardiologist phoned at 5PM to tell me this and said the VT was serious and I might have to go to the ER if it continued, but evidently it must have subsided as he never phoned back. The problem is that I couldn't tell I was in VT, so I don't know if I'm going into it again, which is frightening, now that the monitor if off.

My cardiologist had me come in to his office on Monday Dec 9 for an EKG, but never told me the results. On Thursday, he finally phoned in a prescription for me for Sotalol. I started taking 40mg twice a day for three days, but this did not stop my palps, so I increased it to 80mg twice a day, which was his original prescription. (Since I have multiple chemical sensitivities, I wanted to start out slowly.) The Sotalol is not stopping my palpations or my symptoms of weak arms and legs, light-headednes, and being out of breath at the slightest acitivity. Even rolling over in bed gets my heart beating fast, though the beats are regular. I have 2-3 very slow beats, then a series of 7-12 very fast beats.

My cardiologist and I parted ways, so I cannot go back to him for a medication adjustment. I have an appointment with a new EP on Jan 7, hopefully to get a different medication.

Meanwhile, I have made an appointment with Dr. Hongo at CPMC on Jan. 31 for a consult for ablation surgery , but am wondering if there is some way to move up that date since I have had VT and don't know if the Sotalol is covering it. I already had my records sent to Dr. Hongo and asked to be put on a list if there are any cancellations. Has anyone else had any experience with VT and trying to get in for an earlier consult? I must say that I am a bit frightened.

Thanks much for your help.

Nancy M

Nancy, I had super ventricular tachycardia for almost 40 years. I do not know if that is the same as yours. It would be nonstop for about 5 hours. I never did anything for it. When I had my first ablation , the EP came to my side during the procedure and said,you know that SVT you had, no more. I hope this comforts you a bit. I was never told it was serious. I believe this may have been at the upper part of the heart. I am not sure. Others will correct me. Hope you feel better soon. Lynda

Keep in touch with CPMC . They've gotten quite busy but who knows, something might open up.

______________
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.

Lynda,
I also have SVT, and my cardiologist said it is no big deal; but the VT is a big deal because it can be fatal--sudden death--thus my concern.

Iatrogenia,
I have put my name in on a waiting list in case someone cancels, but it might be good to keep checking with them as you say. With the holidays upon us, most likely no one will be there until after New Years Day, at least most of the doctors around here are closing down for that time period.

Thanks much,
Nancy M

Hi Nancy - in reading over your history here again... you note that you were using 50 mg twice a day of flecainide. When I used it, my dosing increased from 50 mg BID to 150 mg BID... and eventually, even that didn't help the breakthrough arrhythmia until I totally focused on optimizing the intracellular magnesium and worked on the potassium/sodium ratio.

Then I went from daily long and very nasty afib bouts to zero..and cut back again to 50 mg flecainide that kept me in NSR until the ablation date. I also have multiple chemical sensitivity but I was relieved to find that I could tolerate the higher doses when prescribed. I admit I was nervous but choices were slim.

When my heart flared up recently in the aftermath of the Lyme saga, I switched to Rythmol because I didn't want to add additional fluorine chemical residues and contribute more to my thyroid dysfunction. The Rythmol was not a problem either although it seemed to make me more tired than the flec.

Hopefully, Dr. Hongo can help you avoid all drugs eventually.

I wish you well,
Jackie

Nancy, Hang in there. I am sure Dr Hongo and his team will do their best to fit you in. Call them on the 2nd about your EKG and Holter reviews.

I'd call them today and let them know your concern about VT. Your assumption they are closed may not be correct.

______________
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.

Hi Nancy,

I had some communication with Dr. Natale's office today at CPMC via email. I assume they were open, but maybe the office manager was answering from home. I also had a phone conversation with the Natale's NP at CPMC on Christmas Eve, and she was working for sure in the office. It wouldn't hurt to give them a call, these doctor's and their staffs seem to work long days and often.

I wish you well and look forward to hearing how you are doing and your experiences.

I am sure the offices are open during the holidays so if talking to one of the nurses can relieve stress for Nancy, then it is a great idea

Thank you, everyone, for your concern and advice.

It is Friday, Dec. 27, and I just phoned Dr. Hongo's office and spoke to the receptionist. She would not let me talk with Dr. Hongo's nurse and said that Dr. Hongo would not look at my records until it was time for my appointment; thus, I would not be moved up to see him sooner. I am still on the waiting list for cancellations, and she said that was the best they could do.

Meanwhile, I have not been feeling well on Sotalol. I was so light-headed when I went out for some brief shopping yesterday that I felt like I was about to faint several times. The same was true when I tried to go on a brief walk this morning. My hope is that the new local EP that I am going to see for the first time on Jan. 6 will be able to prescribe a different heart med. This EP also does ablation surgery, so I am concerned that he will want to do the surgery and I will offend him if I tell him about Dr. Hongo.

Jackie, I think you already know that I have been doing the Strategy for over a year. I have been on 700-800 mg of magnesium glycinate and or malate during all that time, plus I altered my diet so that it is low sodium and almost no processed foods. I have even had several IVs of magnesium that didn't help my palpations, and I have rubbed on 300mg of magnesium oil twice a day and taken epson salt baths for months, to no avail. I am only supplementing with 1200mg of potassium, and in fact, cut that down to 900 today to experiment with less as potassium causes my blood pressure to get quite low, and so does Sotalol, which may be why I am near fainting. I know with my new low protein/low sulfur diet needed to deal with my CBS polymorphism, I am not getting enough potassium in my food. I can't drink V8 either because the tomatoes are too high in acid, which affects my GERD. It is a catch 22.

Meanwhile, my nutritionist is trying to get my methylation pathways working again. Once that happens, perhaps I will be able to excrete toxins better and take in nutrients better.

Thanks everyone for your continued prayers.

Blessings,
Nancy M

Nancy, How are you doing? Hope things went well with your local EP appt. yesterday.

Hi researcher,

Thanks for remembering my appointment and checking back with me.

Unfortunately, things did not go well with my new EP. He was quite cordial, and I spoke with him for over an hour, but he was upset by my long list of supplements and basically said he thought the supplements could be causing or triggering my afib, and wants me to stop all of them!! I am also taking 15mg of Armour thyroid, which he thought was a contributing factor. He either wants me to stop it or switch to Synthroid as he says it doesn't cause spikes like Armour does. I told him that I was having afib and palpitations long before I ever started the Armour thyroid or took any of the supplements listed, but he didn't have ears to hear this. He said what counts is what's going on now. He also said he couldn't treat me if I didn't give up the supplements as he had no idea what each was doing to my heart or how it was affecting my ion channels.

He told me to stop the Sotalol too. He said that it is too dangerous to take Sotalol or any anti-arrhythmic drug with all the supplements I'm taking. He thought it could do more harm than good. So, I agreed to stop it. I am to take a half dose (40mg x 2 a day) for two weeks. I am already feeling jittery from this withdrawal and it has only been 24 hrs. since I started. I hate to see what is going to happen to my heart when I go off the entire dose!! He did prescribe 10mg Propananol (sp?) up to 4 times a day if I get afib. When I told him I had previously had bad palps all day and night before starting the Sotalol, he also prescribed 25mg of Metoprolol ER per day if I need it, once I am off the Sotalol. This alone hasn't stopped my afib before as I was taking Flecainide with it to stop the arrhythmias, and even then was getting breakthrough afib.

He did an EKG, and of course my heart purred like a kitten and was in NSR. My BP was also up at 112/50, unlike the day before where it was 90/44 when I was light-headed and felt faint all day.

When I asked him about the VT on my Cardionet monitor on Dec. 7, he said he thought it was not VT but abberant atrial-ventricular conduction, which he said is not as serious. Still, it seems like a concern to me.

He also said he does not think I am presently a candidate for ablation surgery, which shocked me!! He said that unless I was having afib for 24hrs. a day or longer, that surgery was not indicated. However, in looking at the Cardionet monitoring report (which I got a copy of from him), of the 10days for which there is a report (for some reason 4 days are missing), I was in afib at some time 9 of those days and having tachycardia and PACs the other day. This seems like sufficient reason for ablation surgery to me, and I am wondering whether the EP even looked at the entire Cardionet report.

I also told the EP about taking EDTA suppositories for three days a week to detox for aluminum as my nutritionist said aluminum was contributing to my afib. It was after my 10th treatment of EDTA in three weeks that I had what Cardionet called VT on Dec. 7th. The EP said I should never have been on EDTA as it could easily throw my ion channel out of balance and cause heart problems. I had taken extra minerals to prevent this, and when I had a blood test on Dec. 9, my minerals were all in normal range.

Jackie had warned me that traditional doctors wouldn't understand about taking supplements or the need for detoxing with EDTA, but I decided to reveal this information to the EP as I thought it was critical in evaluating my condition. Perhaps that was a poor decision. Now I am wondering what I should reveal to Dr. Hongo regarding my supplement list and the EDTA??? I am supposed to see him on Jan. 31.

Thanks much for your help.

Nancy M

Hi Nancy, I guess I am lucky in that my GP is open minded about supplements and actually suggested one (DHEA) that I wasn't aware of when warranted by my blood panel. However, we work together and treat the supplements just like drugs in that I get baseline blood panel and then periodic blood panels after to see if the supplement is working or if dosage needs adjustment (or eliminated if not effective). I am on the generic version of Synthroid (Levothyroxine).and my tsh has been solid as rock for 25 yrs now. You must have hypo TSH to be taking Armour. I would definitely take a look at that to make sure your tsh is stable. I can understand the EP's concern not knowing your history or having the blood work data to review what is going on with intake of each of the supplements. I don't know what Hongo will think about the different supplements and the potential interactions. I am sure he will have similar questions regarding Armour in that he wants proof that it is working as intended. Does your nutritionist have your baseline blood data and post supplement data to help out the EP? All we know right now is that the regiment of supplements has not been helpful in your arrhythmia(s). Don't be disappointed with Hongo if he suggest getting cleaner baseline blood data before committing to an ablation procedure.

Thanks, Researcher, for your thoughts on this. I do have blood work for my thyroid but not for my supplements. My nutritionist does not use blood work but rather tests me with ART, autonomic response testing. This is something most traditional doctors would not accept, so there is little I can show the EP.

Nancy

Nancy:

Never heard of a any doctor, Holistic or traditional, that does not use bloodwork to tell him about his patient, I go to a holistic doctor and he takes about 15 vials of blood, I go twice a year. I am sorry but testing with ART sounds rather weird.

I also take synthroid, I have since my thyroid was nuked about 21 years ago, I seem to do ok with it, I have read that some people who took Armour couldn't continue it because it caused palps, also AF, it is harder to regulate, but, whatever works.

Liz

Thanks, Elizabeth. It's good to get as much input about Synthroid as possible.

I read that one shouldn't take calcium or antiacids within four hours of taking Synthroid, which is a problem for me. I take my thyroid at 6AM and then have breakfast with a mineral complex which includes calcium at 8AM. I take the same mineral complex at lunch and dinner with HCl to get it absorbed. So if I switch to Synthroid, will have to figure out what to do.

Also, do you or Researcher take vitamin K2. Does this have to be taken 4 hours away from Synthroid too?

Thanks much.
Nancy M

The only restriction with synthroid (or generic) is that you can't eat breakfast for 1 hour after taking it. BTW generic is about 1/7th the cost of branded and results were the same for me.

I don't know anything about ART so I googled it and there is a youtube demo of it Lots of talking non-sense followed by quackery. It could be material for a Saturday Night Live spoof.

[www.youtube.com]

ART is very similar, almost identical, to the complementary medicine called Kineseology.

I studied Kineseology thoroughly to the point of getting a Diploma and qualifying to practice it with a view to including it in my Manipulative Therapy Practice.

I never did because in practice I found it simply didn't work.

Sam

Nancy M.

If you take calcium, you do have to take synthroid about 4 hours later, calcium interferes with the uptake of the thyroid hormone. I take vit K, never paid any attention to a time period between taking it and synthroid, K2 plays a role in bone health, so does magnesium, I have never heard that there has to be a time period between taking vit K and synthroid.

You could take synthroid before bedtime, there are people who do just that.

Liz

Thank you Sam for your honest opinion.

My personal experiences with AK and ART were the same. They don't work to give the refinement that the traditional blood draws do to asses the fine discriminations in imbalances. As Liz mentions, a typical assessment will require many vials of blood which each going for specific categories of targets. While ART and AK can give indications of what the body seems to need or reject, there is nothing more definitive than the actual blood assay.

After spinning my wheels for several years with an absolutely wonderful clinician who used ART and something else similar to AK, I gave up when he kept saying my testing showed I needed more calcium, and every time I took the calcium, I went into Afib. Once I stopped the calcium supplementing, the afib stopped as well.

His method also didn't detect several other significant deviations that showed up in the metabolic profile testing.

Nancy -
Keep in mind that very often people don't make progress with Synthroid because their body can't convert the Synthroid (which is T4) to the active form (T3) so they don't make the appropriate progress. I was one; spent 10 years on Synthroid and was supervised right into goiteroid thyroid tissue because I of the lack of conversion. My hindsight tells me that I was lacking iodine and had been deficient probably since birth but my iodine status was never evaluated by a specific test until years later when I requested it. I feel that whole scenario helped set the stage for my arrhythmia which began at age 59.

Jackie

Jackie,

Thank you for telling me about your experience with a clinician who used ART. Recently, we have been questioning some of the ART answers we've been getting from our clinician as they seem to contradict what we were told on the previous visits. So I started the search again for the upteenth time trying to find a functional medicine doctor. I can't find any that take insurance, and their fees are just out of our reach--$450 for an initial visit, plus testing, plus blood work, etc. Our insurance does not even pay for blood tests unless the practioner who orders it is on our insurance. Though our ART clinician doesn't take insurance either, he doesn't order blood tests or nutrition tests that we have to pay for since he uses ART to determine these things. But now we just don't know how accurate he is. Plus, I still have insomnia issues, digestion issues, and afib--all things he hasn't been able to resolve over the last year and a half of seeing him.

We are also trying to figure out whether it would be wise to stop all supplements as this last EP suggested and see what happens with my heart. He seems to think that one or more of the supplements is causing the afib, and since I've been on supplements (though not the same ones) for the last 15 years, I suppose this is a possibility. Since some of my methylation polymorphisms are causing my phase II liver function excretion to not work properly (according to ART), maybe some supplements are building up to toxic levels. On the other hand, there are supplements that I'm taking now to help my methylation that I don't want to stop since it is a major health issue.

I've also been on a search for another EP. There are only two within a 90minute drive on my insurance (both in Santa Barbara), and I have no way of knowing how either will respond to my supplement list. I'm wondering if just going to a local cardiologist might be better as the last ones I've had never tormented me over the supplement list, though they certainly didn't understand it either.

Thanks, everyone, for your help.

Nancy M