Hello and Introduction

Hi Everyone,

I am new here and wanted to introduce myself. My name is Anne and I am a 33 year old female who has been diagnosed with afib. To say that I am scared and overwhelmed is an understatement. I have been looking through this forum and am incredibly impressed with all of the valuable information. I have learned more form reading threads that from both of my doctors’ combined.

I have had 3 episodes since April – the last 2 being 4 weeks apart. The first occurred when my daughter woke up suddenly in the night and screamed out, startling me awake. The other 2 woke me from sleep.

April – afib 45 minutes
August – afib 12 hours
September – afib 4 hours

During my episode in August they kept me hooked up and did an echo. They told me my heart looked normal except for the afib. Told me it wasn’t a thyroid issue, my magnesium levels were normal and my electrolytes where normal as well. They sent me home and told me to see an EP.

I saw an EP who made me feel terrible. He told me it was “weird” to have this so young and then told me it won’t kill me and I should come back once it gets unbearable so I can have an ablation. He also told me to take 2 baby aspirin/day.

I found a few websites that helped me immensely – the first was “Living with Atrial Fibrillation.” I connected with Travis who was WONDERFUL and got me connected with this website and had other great research recommendations for me. The other was Dr. John Mandrola’s website.

Then, I got a second opinion, and this doctor was somewhat more helpful, but still didn’t really give me any new info. I asked him about supplements and he told me to avoid all of them. I live in Milwaukee and I was told this was the best doctor for afib in the area.

I have a long history of heart palpitations. Wore a holter monitor last year for a week and was told they were nothing to worry about. Both of my recent afib episodes came after a day or so of intense palpitations. I almost feel that is my new “warning sign.” I also have strange sensations such as a pounding heart quite often. The strangest thing is that after my afib episodes, my heart is so calm and quiet for a few days after I convert. Almost like it gets all of the wacky electricity out of its system and then calms down.

I have a few main questions for all of you.

1. I want to see a doctor who might be able to offer suggestions of things I might want to try to keep my heart healthy. Not just tell me it is “weird.” Check my actual vitamin levels, see if I am deficient in anything and rule out any other heart conditions, etc. I am starting to think maybe an EP will not run all of these tests? Is your GP helping you all with this or are you doing this completely independently with your own research?

2. After reading John Mandrola’s blog, I really like his approach and am considering scheduling an apt with him, which would mean flying to Kentucky. Obviously, this is all very expensive and I want to be sure I am seeing the right doctor. I don’t have the money to fly around the country for second opinions ☺ It is clear from reading this forum that Dr. Natale is THE doctor for ablations. Am I better off going directly to him even if I don’t need an ablation? Do individuals generally go to him when things get really bad, or will he run other tests? I’m just not sure where to go to get the best care right now. I live in Milwaukee, WI.

3. I know I need to start a vitamin and supplement regimen. I looked at the vitamin shop and am completely overwhelmed with where to start. Is there a sample list somewhere? I know I probably need to just start sifting through everything and create my own, but I figured I would check.

I apologize if my questions are all over the place. I just feel like I need to try something, not just sit around and wait for my next afib episode. I appreciate you taking the time to read this incredibly long intro!!

Welcome Anne,

Here are some of my thoughts.

1. I'm pretty self-directed, though early on did have a GP that was very supportive.

2. I'm not sure I'd travel at this stage. Natale is certainly the guy for an ablation, but you're not there yet. Other than reading his blog sometimes, don't know Mandrola. I think he is a nice, bright guy, but not sure he'd be the ticket for other than ablation strategy.

3. Jackie's "The Strategy" is a good place to start <[www.afibbers.org]

- You are young for this, however not unheard of by any means
- The test they likely ran for serum magnesium will not tell you anything. It can be normal and your intracellular levels can still be low. Of course if it were low, you'd be low.
- " The strangest thing is that after my afib episodes, my heart is so calm and quiet for a few days after I convert. Almost like it gets all of the wacky electricity out of its system and then calms down. " This is fairly common and people talked about it a lot here 10 years ago. Interesting reading in the Conference Room: <[afibbers.org] this talks about what you describe: <[www.afibbers.org]

In my case, I'm 60 and have had afib for 11 years. In the first 4 or 5 months, initially I had episodes that came every 10-14 days and lasted 6 to 9 hours. They could be terminated with exercise and would come on in the early morning (3 AM). Then I had an episode that would not convert on its own. Lasted 2 1/2 months and terminated with 300 mg flecainide. During the episode, the EP said I was doing well out of rhythm and to stay that way. I proposed keeping myself in rhythm with electrolytes and using on-demand (or PIP - pill in pocket) flecainide when the electrolytes failed. He agreed and I've been doing that ever since. I iterated to this - I take magnesium to bowel tolerance (for me this is a HUGE amount: 4-6 g/day- this is very individual), a couple of grams of potassium & 4 grams taurine. I also minimize calcium intake. This has worked pretty well to keep me in remission for nearly 11 years now. I've had one episode in the last 28 months. The flec normally converts me in 1-2 hours.

I do monitor my heart, looking for ectopics: <[www.afibbers.org] <[www.afibbers.org] These are old sessions, the concepts haven't changed, but the equipment has a bit. If interested, I can provide a more detailed update. I use the monitor results to see what is happening. My assumption is that high PAC rates are bad and if I can change something & lower them, that is good and less likely for me to go into afib.

Cheers,

George



Edited 1 time(s). Last edit at 09/18/2015 12:17PM by GeorgeN.

Hello Anne and Welcome.

I'm very sorry that you are experiencing afib at such a young age, although it's not that uncommon when certain imbalances are in play.

George has offered very useful links to consider so when you have digested those, I'm offering my help in a PM (private message) to which you can respond if it would be useful to you.

Unfortunately, The Strategy didn't include the importance of alkalinity and should be revised to explain the use of magnesium bicarbonate water (alkaline water) to help reduce acidity and improve the body's ability to make new cells and maintain healthy through adequate cellular energy or voltage.

Refer to this report: Alkalinity, Healing, pH and Voltage - The Inside Story at this link: [www.afibbers.org]

Glad to be of assistance so just let me know.

Best to you,
Jackie

I feel strongly about minimizing the time spent in afib. This minimizes progression. Even if you do progress to an ablation, the less time you spend in afib the better off you'll be. Not every cardio/EP has this priority. Hence exploring something like PIP flecainide to convert you quickly is something I would do with the EP. As I'm 74 kg (164 pounds), my dose is 300 mg flec. I take (chew it - awful) as soon as I know I'm in afib and wash down with warm water (or ice cold water as I did it once in a snow cave & my water bottle water was half frozen...). Jackie has a slightly different procedure <[www.afibbers.org]

Quote

At the onset of AF, take 25 mg. Toprol XL...wait 30 minutes and then 100 mg flecainide. Wait 1 hour, if not converted, take another 100 mg flecainide. The results were totally amazing and a couple times a year for the next 3 years, I had a chance to test the efficacy. As advertised, PIP worked very well for me. My only regret is that in the early days of my AF challenge, the PIP approach wasn't offered instead of the daily doses continually.

I also get prone after I take the flec till I convert. This does minimize the possibility of converting to atrial flutter, as does Jackie's beta blocker.

<[www.afibbers.org]

Quote

Termination of episodes
LAF episodes can be successfully terminated in a hospital setting by injection of flecainide, dofetilide or ibutilide provided the injection is carried out very soon after the start of an episode. It is also possible to terminate an episode at home by using the on-demand (pill-in-the-pocket) approach. Several afibbers have found this approach very effective in keeping the duration of their episodes to two hours or less. This approach involves swallowing propafenone or flecainide tablets with warm water as soon as possible after the start of an episode. The recommended dosage is 200 mg of flecainide or 450 mg of propafenone (for people weighing 70 kg (155 lbs)or less) or 300 mg of flecainide or 600 mg of propafenone for people weighing more than 70 kg. I have found that lying down on my back (supine position) after swallowing the pills results in quicker conversion, perhaps because being in this position would give the heart rate-slowing parasymphatetic arm of the ANS a bit of a boost.

Hi Anne,

I am in KY and I have talked with Dr. Mandrola in Louisville. He is really an awesome doc with some different approaches. to his credit he actually experienced a lone (??) episode of afib, so he is very understanding. I think just talking to different docs can help. Just gives you a bigger picture. My doctor is in Lexington, KY (Dr. Tomassoni) he is very talented and has helped me along the way including ablations. Like you I was some weird phenom that got hit with this early (35). If you talk to a reg doctor they will almost always tell you they have never heard of afib that early.
In my early days (my story is a bit complex) I also saw Dr. Natale. I additionally have talked with Dr. Sweikert also.
Dr. tomassoni used a cautious treatment approach that focused on making my episodes less frequent and short. As George said the more it happens and longer they are the more persistent they become.
There are drugs (flecainide is very popular) that help.

It took me about ten years before the panic and overwhelming feeling that I was doomed with a heart attack to stop. I will say my panic stopped eventually but the feelings of doom never really did. I can say now after my first left atrium ablation I am afib free for the time being. I understand that more than likely it will sneak up again but I am 110% ready to nip it with another ablation.
The procedure is nothing to fear.

I stayed relatively controlled (tachycardia then afib) for several years with meds.
I do take at least one low sodium V8 and magnesium every day, I think it helps
You will be OK mainly keep your mind sharp to deal with the annoyance.

tim

Welcome to the Forum Anne!

I'd be happy to discuss your questions too, if you wish, though I've not a lot of time to respond back and forth in writing at the moment. Check your PM (private message) where you will find a note and how you can send me your number and I can try to reach you in the next few days if that works for you via the phone. I find that way a bit faster and more effective way to cover the type of questions most new folks to the forum might have in addition to all the good suggestions you have already gotten to your thread.

Take care,
Shannon

Thanks so much for all of your responses! You guys are seriously amazing.

I actually was prescribed flecainide 200mg (I am 115 lbs) and metoprolol 25mgs to take as pill in the pocket when I go into afib by the second doctor that I saw. I didn't take it during my most recent episode because I was too freaked out to take it at 3am and then go back to bed. Sounds like I need to get over that fear and that the flec is the way to go. I now understand the main thing is to get out of afib as soon as I can so I will take it right after the next episode. I was told to take both, not sure if that is typical protocol.

George, thanks so much for all of the helpful links. I am 1/3 of the way through The Strategy and that has been really helpful. Thanks also for sharing your story and history of afib. It is so helpful to know what other's journey's have been like. Evening knowing your tricks with the flec is helpful! Do you chew it so it gets in your bloodstream quickly? I'm not sure I am that brave

Tim, thanks also for sharing your story. It's good that I am not alone with such an early diagnosis. Thanks also for info on the doctors and your experience with Mandrola. I'm glad to hear your ablation has given you some relief for the time being.

Shannon and Jackie, thanks so much for the info and also for your PMs. You have both been so helpful.

Thanks for helping to ease my anxiety!! I'm sure I will have many more questions come up and it is great to know you are all here!

Thanks,
Anne

"Do you chew it so it gets in your bloodstream quickly?"

Yes. I want to maximize the impact as quickly and as much as I can.

My path to afib was chronic fitness. My afib would come on at ~3 AM, and was a delayed vagal response to heavy exercise. So my first afib episode was 2-3 days after training at 14,000' for a race that starts at 6,300' and goes to 14,100' over 13 miles. This was my pattern.

The quickest response to flec was 25 minutes. I'd packed in with a 70 pound pack and then dug a 3 person snow cave, mostly by myself. I had the vagal response at 11:30 pm, in my bag in the snow cave. I chewed the flec, chased it with ice water and converted in 25 minutes.

It took a bit, but though most would consider me very active, I moderate heavy endurance activities now.

I would say that most of us try to clean up our habits as much as possible. Banish and trace of insulin resistance, eat cleanly & etc. That being said, there is no trick that will work for all. We are all experiments of one. What other people do are ideas for you to try, they may or may not apply.

CR 61 <[www.afibbers.org] is a collection of various stories.

Good luck!

George

Will try to call you Sunday Anne.

Sleep well,

Shannon

>
>
> "It took me about ten years before the panic and
> overwhelming feeling that I was doomed with a
> heart attack to stop. I will say my panic stopped
> eventually but the feelings of doom never did"

That was just how it feels to me even now. I ran out of mg glycinate one day last week and my new computer died the same day so i could not reorder til i got this loaner. Last nite i got a real wowser of an afib episode. I took 2 ativan and went to sleep. It was still there in the morning so i took 2 more. That seems to have worked, though i feel rather fragile, as though any little thing would tip me back into afib. Yay iHerb, if i order this morning i should have my stuff by wednesday. Got some Kgluconate but it is not sufficient without the Mg.

PeggyM