Sudden increase in AF episodes - scared and anxious

[wendy6]

My first post to this forum, have read it many times but never participated before

I am female aged 60, with no heart disease or other illnesses, was diagnosed with Paroxysmal (Lone) AF in 2007, have been on various combinations of drugs to control over the years, for the past 4 years have been on Flecainide 50mg twice a day + Verapamil 120Mg twice a day. For past 2 years have also been on Warfarin to thin blood and avoid risk if stroke.

My best normal occurrence is one episode every 6 weeks, although last year I went for 4 months without any!!! However since January I have had 10 episodes, and this past week I have had one a day over past 5 days. They usually last up to 2 hours, start with big irregular heart palpitations, then settle to irregular heartbeats, slow, no beats, fast then slow and repeat, for the last 15 minutes before going back into sinus its goes to fast but regular beats that's when I know it's on its way out.

When I saw my cardiologist last in November, he told me to take 3 x 50mg a day, or just take one extra 50mg when I have an episode. To be honest I don't really have any evidence that the Flecainide is working at all. I asked him last time if I could stop and just take the pill in the pocket method of control. ie. you take 150 or 200mg in one hit at onset of AF. It seems to be popular in USA but not in UK. but he said no, he didn't like this method as my episodes might become more aggressive without continual medication control.

Whilst I was having episodes every 6 - 8 weeks I managed because in-between episodes I could forget about my condition and live normally, but now I'm scared again and anxiety levels are high, I so worried.

I should add that in my case there are many triggers it's hard to isolate them or avoid them:-

•bending down to pick something up, turning over in bed to left side, fear or excitement (adrenalin rush) too much alcohol ( cocktails on holiday!) but not normal social drinking (couple glasses wine)

•Caffeine, ok with one coffee shop cappuccino, otherwise have dec-caf, but no evidence to support caffeine is a trigger for me, as on holiday have more with no effect.

•Large meal of carbohydrates, pasta can set me off after eating.

•Dreaming - wake up with AF. This is recent, and happened twice in week.

•I used to think that stress was a trigger, but last year I went through the worse time at work, without any AF.

My company being taken over,6 months of not knowing if job secure, TUPE, then finding out that I was to be made redundant, found out on holiday! and did not have one AF episode that was during my 4 month reprieve. Was made redundant 1st August - first episode was not until end September.

Have just been reading again about the benefits of Magnesium and in particular Magnesium Taurate how it can almost be a miracle cure, but certainly helps reduce AF episodes. Really want to try this, especially at the moment as I'm having an episode every day, perhaps my magnesium is very depleted. However - this is the dilemma, you can't take magnesium supplements if on Warfarin! apparently it increases toxicity and increases thinning so risk of bleeding. What do I do!!!!?

I work full time, had to have today off, said it was a migraine, but real reasons was just so tired and anxious not slept much last night, that's after the 1 hour AF episode triggered by bending down to take my sock off!!!

Sorry for going on a bit but just so fed up and at a loss of what to do, I'm pretty sure that when I see my cardiologist, will have to wait month or so I expect, he will just say take more Flecainide.

Read about going for the Ablation treatment, my Cardiologist told me before that I wasn't ideal candidate becausse my AF was controlled and not causing me too much distress. Also, from what Iv'e read most people have to have it done many times and it then it doesn't work completely.Should I consider that now?

The way I'm feeling at the moment, I feel that I need to take action, try something else, I want to stop taking heart meds and warfarin and try Magnesium but it's a big leap.

Would love to hear your thoughts anyone, advice, support most welcome.

[Rellim296]

Hi there Wendy6! Much of what you say is so familiar. It's AF trying to get the upper hand and you have to slap it on the wrist.

I am sure you will get useful advice from others. I was persuaded to take 150mgs of flecainide twice a day and I now regret that. I wish I had kept the dose down and had dealt with AF, when it occurred, will extra flecainide as you describe. Flecainide was wonderful when I first took it, but after a couple of years the AF, like yours, was occurring more frequently.

Ablation has improved my situation enormously and I wish I had been swifter to move in that direction. I saw my EP privately not so long ago and saved a lot of waiting. He has put me on the list for a further ablation, but I am really pretty pleased with the way I am right now. I don't take flecainide any more (though its side effects have not gone away) and I get little bits of AF now and then that are no more than tedious. I don't feel I need further treatment but as the waiting list is a year long, I'm on it in case when my turn comes I'm not as good as I am at present.

[wendy6 in reply to Rellim296]

Thank you for your support, I am considering Ablation now and will talk to Cardiologist, I don't have much faith in him, he wanted to sign me off a year ago ( write me off more like!) but I insisted that I see him once a year at least.

Unfortunately cannot afford to go private to see EP, can your GP refer you under NHS, will find out?

Can I ask, you say you have already had one ablation, how long ago was that?

What side effects did you experience with Flecainide?

Wendy

[Rellim296 in reply to wendy6]

I had an ablation was a year ago. I had an earlier one four years ago. They were both relatively brief - each took about an hour an a half.

I noticed my toes had become numb after I'd been taking flecainide for a couple of years and when it was increased from 100mgs x 2 to 150mgs x 2 a day, the numbness swiftly spread to my heels and ankles and up my shins. It's eight months since I stopped taking flecainide and my shins are a little better but the ankles and feet still feel really weird. It used to be a bit as if they were wrapped in cling film, but the sensation has become a bit deeper. Also I don't have a good sense of taste - things like fresh coriander seem bland. A specialist told me flecainide was a likely culprit.

[Rellim296 in reply to wendy6]

PS - I would enquire about how much a private EP appointment costs - it might be less than you imagine.

[fallingtopieces]

I don't think anyone takes Magnesium and stops their prescribed medicine, so don't do that but I'm sure plenty of people are on warfarin and magnesium. Take a look at the website 'Afibbers'. It's a U.S. site where they're all on supplements. Join up and ask the warfarin question, or research it on there and you will probably find its been mentioned already.

Btw ,if I were you and offered ablation I would take it.

I'm not where you are yet, so not had an ablation.

Pat

[Beancounter Volunteer]

Please do not stop taking warfarin, or another anti-coagulant. The really big risk of AF is stroke, and only a prescription anti-coagulant can mitigate that risk.

Magnesium may help, but it's highly unlikey to cure, and in any case your warfarin dose can be easily adjusted to take account of whatever other things you are on, if Magnesium does increase anti-coagulation (Not blood thinning there is no such thing, nothing "thins" the blood) then this will show in your INR and your warfarin will be reduced. I'll have a little bet with you that the effect on your INR will be negligible however.

Also you don't say you've seen and EP, but a Cardiologist who trots out the hoary old maxim, of "when it gets bad enough we shall try ablation" with due respect to that person.... Codswallop. That may have been the thinking 10 - 15 years ago, but it's certainly not accurate now. Go see an EP and get someone on your side treating your AF with a treatment plan you both understand and agree on.

Be well

Ian

[meadfoot]

Hi Wendy

I am so sorry you are having such a tough time and completely understand your concerns and frustrations. You mention your cardiologist, but you really need to see an Electrophysiologist instead.

I take flecainide with success and I would not recommend you taking yourself off medication and trying something like magnesium alone and certainly would not come off anticoagulation. In fact I would be dragged kicking and screaming if a medic suggested I did not need one as the stroke risk is so high for us AFers.

Now is the time to find a good EP and discuss your medical history and recent escalating AF events with him/her including the value or not to you in having an ablation.

Triggers seem a bit of a red herring for many of us. As you say your stress levels were very high and no AF events then other times they kick in. The annoying fact is if we are predisposed to AF then many things can appear to be triggers but I have wasted many an hour and tied myself up in knots trying to find what to do, what to avoid etc mostly to no avail.

This pesky condition can blight our lives to a greater or lesser extent. It sounds as though you have well and truly had enough so I would grasp the nettle and see an EP as a priority and together agree the best way forward for you.

Thinking of you and really feel for you. Take care.

Dee x

[Buffafly]

I have found that anything that irritates my lungs or digestive system affect my heart as well, so although I agree about not obsessing about triggers it is worth having a think about any other recent health issues or changes in lifestyle.

[sportscoach]

I take 800/1000mg of magnesium a day.... my INR is 2.4 and has been give or take a point for months just don't take the anticoagulate the same time as the magnesium, if you worry about everything you read you won't get out of bed in the mornings we are all different try it and monitor yourself.

[Hidden]

I saw a Naturopath who says he treats a lot of AF patients with Mg and CoQ10. He did a blood test and because I was low he put me on Nutri Ultra Muscleze (mg +potassium + taurine and other stuff) and Co Q10 supplement. The Muscleze helped my sleeping straight away. Please check first with your GP/cardio/other trusted practitioner before any trial.

Hope this helps Wendy.

[CTG99]

I went the private route to see an EP and the first appointment was £275. The follow-up was £125 and for the ablation he's put me on his NHS waiting list - this is quite normal apparently for people who don't have private health insurance.

I had most of the triggers that you mentioned when my AF first started, however, I have found that Amatsu (a form of Japanese osteopathy) has relaxed my chest and vagal nerve, so I can now bend down to the washing machine and lie on either side without triggering an episode. I've also lost the feeling of tightness in my chest when I am in AF. I know Bob has used the Bowen technique to relax the vagal nerve - it might be worth you looking at something along those lines to help ease the effects for you.

Caroline

[Rellim296 in reply to CTG99]

I paid a lot less than this, but it was a follow-up session with my NHS EP. I saw him within days of making the appointment and we covered a lot of useful ground - much of it not what I had not expected to discuss.

[Dodie117]

My EP gave me choice -ablation or meds route. I was having episodes 4 or 5 times a week. He did say he thought the earlier I had the ablation the better before AF/meds had a chance to damage the heart. I went for ablation 16months ago and feel great. I may need another but will happily go for it if necessary. I would say find an ep and get referral asap.

Mine was all through NHS. Waiting list for ablation was 3 months in London . good luck

[bayfield]

Wait. What?? " my Cardiologist told me before that I wasn't ideal candidate becausse my AF was controlled and not causing me too much distress. "

You are in a ton of distress, obviously! This is the reason you turn to ablation - if you can handle the symptoms and you can live your life in AF then fine. If not you need a doc who is more aggressive. You say you are in good health, perfect reason to at least try if you ask me! If you are obese, diabetic, smoker, and have sleep apnea then that is a different story. Then you work on the risk factors and try too control the obvious causes of the disease. You are in early stages of the disease as you haven't progressed to a persistent state. The heart has likely not remodeled to a great extent so there is hope for an ablation. Go for it! Why suffer if there is a chance?

I did a cryoablation as a first line treatment - no drugs to fail first - and I am still having some bouts. I am gearing up for round two in a few months if I don't get better within the next month. I hate the symptoms! Attack without drugs is the way for me.

Good luck!!

[Dave1961]

I started magnesium supplements (after doing research not because they were prescribed to me) about 6-8 weeks ago and feel wonderful. I have gone from at least weekly or more feeling in the verge of an AF (and often falling into AF) to hardly even noticing AF.

In factt in the last 2 weeks a couple times I have had that awful skip-a-beat sensation and dreaded an AF occurring but it disappeared immediately.

I can only attribute this to the magnesium (chelated is the best) I have been having - most of us are deficient in magnesium and I personally am using amiodarone which leeches it from your body.

Magnesium is SO important when it comes to regulating your heart beat and is also great increasing bone mass. I also like that the way to tell if you are getting enough magnesium is to keep increasing the dose until your stools become soft.. The body expels any magnesium not needed and this softens your stools so its a perfect indicator to figure how much you need without worrying about overdosing.

I m not on Warfarin but haave spent the last hour or so investigating on your behalf and have found nothing that indicates you should not take MG with Warfarin? Perhaps I missed something?

Interestingly I stumbled across some info regarding Verapamil (because you mentioned it not because I take it) and it is basically a pharmaceutical version of magnesium. Drug companies built the drug on the skeleton of magnesium to mimic some of its effects!

So - apart from all of what I have said - I am a major magnesium fan and can not recommend it highly enough as long as you can confirm it will not react adversely to your other meds. Would be interested to get the link you have regarding warfarin/magnesium interaction.

[wendy6]

Thank you everyone for your replies advice and information. Have gone 2 days without AF episode but tonight bending down set it off again!!!! lasted 1 hour so could be worse but miserable end to a difficult week. Am trying to be positive, have ordered some Magnesium Taurate, will take with all my usual meds and Warfarin! but will take Warfarin at different time and get INR checked regularly, as I do anyway.

Feeling tired now, but will respond to individual replies tomorrow.

I will also add link to the article I read re Warfarin v Magnesium.

[wendy6]

Have ordered the Magnesium Taurate should arrive tomorrow. However, had an AF episode Friday evening, last night at midnight and this afternoon at work, still in it now, started at 3pm, its now 4.30pm.

When it happens at home I lie down flat, which helps a bit I think as it gets my heart rate down as low as possible.

So in the past week that's 8 episodes. Considering my normal is one every 6 - 8 weeks you can imagine how I'm feeling! I have written to my GP asking to be referred urgently to my Cardiologist, who in turn I hope will consider doing something different with my meds, and refer me for Ablation. I am scared that I will go into permanent AF or even have to be hospitilised. Feeling dreadful,

anxiety levels high, and exhausted with the worry.

[Rellim296]

It's a real roller coaster, but I think most of us have a nightmare spell and then things seem better and then just when you think you are doing well, you find you aren't. However every time things go bad and improve, you learn and gain control and second time round it is often much less worrying. At least your AF doesn't last for very long and your dose of flecainide is very moderate. I too felt maybe it had very little effect, but my EP said he thought I would be in AF most of the time without it.

Hope your AF has already subsided. Do get to see an EP as soon as you can.

[wendy6 in reply to Rellim296]

Hi Rellim 296, thanks for your support. Came home at 5pm went straight to bed with electric blanket at high! within 15 minutes had subsided. I do get big palpitations and fast rate so its very uncomfortable and distressing. Cant understand those who say they still do exercise and carry out with little or no symptoms, we all experience in different ways I guess. Hopefully this bad patch will not last - this afternoon I took 50mg tablet at 2.30pm as my Cardiologist told me to take one mid-day when I'm feeling like episode might be coming. So I did, then half an hour later I go into AF.!!?

The only way I will get to see an EP is if my cardiologist refers me to London for an Ablation assessment, which will taker some months waiting, otherwise seeing an EP can only be done as a private patient.

Do you know of any other way to get to see a AP through NHS?

[Rellim296 in reply to wendy6]

No, I don't know of a quick route other than seeing an EP privately. Why not ring around and see just how much it might cost? As I said, mine was a very modest amount.

EPs seem happy to slip patients into the NHS system after seeing them privately.

I think anyone - if they are keen - is a potentially good candidate for an ablation if it's a route that could move them forwards.