Hello everyone! First, a practical question about the forum.
Is it best to start a new post on a topic that's been discussed if some time has passed, as opposed to continuing on an old thread?
That's basically what I'm doing here, but am open to learning from those who've been here longer. My impression has been that threads tend to get buried after a bit unless you're following the person or the conversation. I know how to follow a person, but haven't figured out how to follow a conversation, so advice is welcome.
Here's the latest on my ongoing experiment that involves the supplement Heart Calm, which contains CoQ10, magnesium, taurine, and potassium. I wanted to see if I can benefit from taking these micronutrients. I don't tolerate taking Flecainide regularly, but use it Pill-in-the-Pocket, and wanted to see if taking them might reduce the frequency of episodes or just help me feel better.
I've been experimenting with dosage and timing since the end of December.
CoQ10 provides energy and Taurine is calming. The suggested daily dose of CoQ10 in Heart Calm is small - 30 mg, whereas Dr. Stephen Sinatra (Metabolic Cardiology) suggests around 100-300.
At first, 3 capsules (the recommended dose) was clearly too much and kept me wide awake at night. As I mentioned in the other post, I'm really sensitive!
Over a few weeks, I worked up to 3 capsules, which then seemed not enough, so I recently started adding 100 mg extra of CoQ10. I also take additional Taurine before bedtime to be sure I sleep.
Overall, I feel so much better from taking the supplements, as I shared in the other post. My energy level, clarity of thinking and mood are significantly better.
The challenge I still have not fully sorted out is how much to take and when to take the doses later in the day so that I don't end up triggering an episode. I've had days when if I didn't take enough to get me through the night, I'd wake up in very mild AF.
If I took too much, it could keep me awake or else trigger an episode. I tried over 200 mg of CoQ10 the other day and had a long episode after teaching that knocked me out. Guess I won't do that again!!
Then in the mix there are days that are just lovely and normal.
I do still have to be mindful of my exertion level. Yesterday's dose was 130 mg, which was high for me. I could sleep and woke in NSR, but could feel the extra energy in my body, so went for a long walk that felt great. Heart was great, but then in the afternoon, after feeling like I needed another dose of Heart Calm, I went into AF.
The episodes have tended to be milder and short, like an hour or less, maybe up to 4 hours. Some have self-converted quickly, but this week, after taking Flecainide, they were actually longer. Those were on days of more exertion, teaching large classes.
I'm scheduled to see my cardiologist on Tuesday and mentioned Metabolic Cardiology in our email conversation about the sleep study. I sent her the link to the book. She thanked me for the info and said she'd have to look into it, which pleased me.
Even with the flickering of episodes, they are generally easier to tolerate somehow. I feel somehow physically stronger and don't get thrown off as much as I used to from episodes, though the one on Saturday that was 16 hours long was awful.
So that's where I am. Still exploring and carrying on in the AF adventure, grateful to be able to function better overall, which takes loads of pressure off of me that I'd been carrying. And I'd love to be free of episodes, like everyone else. I'm hoping that maybe if I can get the dosage and timing right, that could possibly happen. I'll keep trying, anyway!
I'm always eager to hear the experiences of others who have looked into the micronutrients, so feel free to share.
Looking forward to the cardio visit, too. Curious to see what will unfold!
I think it's always better to start a new post, then all forum members get to see it and not only the ones that are following you or your particular topic of interest.
To follow a single post yourself (and not all the ones created by that person) just click on Follow post at the bottom of the one you're interested in and you will be advised by email of all further additions to it.
I always watch your posts with interest as it's good to hear of someone who is actually experimenting and trying to discover what really helps their AF, rather than just take prescribed medication, sit back and hope the medical profession can solve the problem for them with pills. I believe these can sometimes do more harm than good.
I'm trying to do very much the same as you, but do not want to add any more pills to the ones I already have to take, even if they are considered naturally beneficial! I find the bulking agents in any pills affect me greatly. So my research is mainly in foods that help. I've just discovered rolled buckwheat (not actually wheat, despite the name, but a seed). I put it into my morning home made muesli, just went into my excellent health food store and asked what I could use as a base instead of oats. After almost a lifetime of stomach soreness, I feel sure that my AF is triggered by my digestive system.
It’s not easy being as sensitive as I am; for better or for worse, I’m really not able to just take the few different pills they suggest, so sitting back and letting them drive would be a dangerous option for me. I shudder to think where I’d be if I’d blindly followed my last cardio’s directives without question.
I’m not a close-minded person by nature, so bumping into that close-minded cardio mindset is exasperating.
Plus, I tend to land in that marginal area that’s outside of “works for most people” in terms of effects of drugs. Pointing that out as politely as possible has resulted in docs giving up or getting mad at me. Which doesn’t exactly help with AF!
As positive as I try to be about all of it as I figure things out, the stakes feel rather high. Lately I’m concerned about whether I will be able to continue teaching my college classes. They are lovely people, but in spite of everything I do to take care of myself, it’s exhausting teaching a large group and has resulted in episodes.
So it’s a constant jigsaw puzzle of trying to see what I can do to be able to function so as to keep a roof over my head.
Yesterday I started teaching a new private student, a fascinating guy who inspires me. He started a tech company that’s big in Europe & is in the States for a while to work with some companies his company bought...all in a second language he hasn’t spoken for long.
In thinking about what you wrote, it struck me that living where I do probably impacts my approach to AF also. Tech is big here and this guy reminds me of the aspect of that mindset that I like (being clear that there are troubling aspects of the tech world, for sure). In contrast to some of the docs I’ve met, his mindset is open-minded, hugely creative and quietly fearlessly bold and decisive. As a result, he’s been very successful. He used the same approach to recovering from cancer.
So I’ll keep looking...at this point, I’m hoping my newish cardio will continue to be supportive.
OK, enough for now. Will see if I can sleep enough to be able to teach in the morning.
I'm with Jean on this that I like reading what others are trialing .
I have Diabetes 2 which I am trialing various supplements and with AFIB there seems to be a synergy between the two.
Taurine is high on the recommendations for both , Brewers Yeast is also beneficial and aids digestion - the list goes on.
But what I found interesting was Nella's response to CoQ10 making her feel energized but not necessarily in a good way.
I have been taking 3 x 150mg CoQ10 daily with Ethyl L-Carnitine 3 x 735mg and feel well but not like the Energizer Bunny. I have been taking these with my Diltiazem 30 minutes after 50mg of Flecainide.
I also have added a low dose of R+Alpha Lipoic Acid as this helps maximum absorption .
But keep in mind I am doing not just AFIB but also glucose.
I have been on Magnesium Chelate over 3 years and just recently added Magnesium Taurate .
Magnesium is proven beyond doubt , last time I had AFIB was July 2015.
Hi Nella, two thoughts for you, my Naturopath recommended taking an Mg compound (similar to Heart Calm ingredients) and CoQ10, the former relaxes and the latter strengthens the heart. I also check both levels a couple of times a year. Good luck
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