Dose adjustment again!

[Tototcx]

Saw my EP yesterday and it's still too early he reckons for an ablation. So he's increased my flecainide dose to 100mg three times a day with a 50mg -100mg PIP for any breakthrough PAF up my sleeve Also to start on bisoprolol 1.25mg to see how that goes..take some pressure off my heart rate although it's abouts 70 at rest anyway but I guess it'd kick in if I go into AF . I'm happy enough to try this and he gave me a routine appointment to check up on me ....the next available one being October 2016!!!!!

One interesting fact I picked up : I couldn't understand how some people don't know they are in AF and he said its because I get a really hefty ventricular response to the chaotic atrial Arrythmia. Some people's atria are just flapping about and the hearts rate doesn't react much but obviously mine does! Flapping obviously a highly technical cardiologist term 😉

So wish me luck with my new regime. Bit nervous but hopeful. Better than recently anyway .

[Finvola]

Best wishes Tototcx on your new regime. I always felt in AF as if my heart was kicking like a mule too. Flappy atria, mule kicks and bags of ferrets in the chest - ach, the jargon!

[BobD Volunteer in reply to Finvola]

We had a member a few years ago who described it as two teanagers having a pillow fight.

[wendy6 in reply to Finvola]

Me too, feels like the whole cast of strictly come dancing are doing the cha cha cha, rumba, quickstep, charlston, jive, tango etc etc, you get it, all at the same time. The rythym changes so many times and very violently - is horrible.

[Hidden]

May be wrong, but in US 300 mg. flecainide total per day is the limit.

[BobD Volunteer in reply to Hidden]

Sounds right to me Lorna. (by the way I live about ten miles from Lorna Doone country.

[Hidden in reply to BobD]

Lucky fellow!

[Hidden]

From what I have read here, I agree with Lorna your dosage rate looks tops and for me the PIP extra would make me nervous. I would certainly book a private appointment in 3 months time or earlier if you are getting some AF breakthrough, to discuss progress - must be a good investment if only peace of mind.

Good luck.

[Tototcx in reply to Hidden]

I think that's probably likely if I'm still getting arrhythmia in a month . I don't care how much it costs tbh.

Funnily enough I got an episode last night after my 100mg at breakfast and then at 2pm and it started at 6.15. Took 100mg flecainide and it settled down in 3 hrs so I didn't take my last dose at night . Total daily dosage =300mg

I still don't feel great though. Think its nerves /anxiety 😣

[Hidden in reply to Tototcx]

I would also suggest brisk walking a mile x2 per day or building up to that plus taking advice on Magnesium and CoQ10 supplements. To maintain positivity look at Mindfulness and Qigong breathing exercises......sounds a bit fluffy but it works for me.

I did have the option of an ablation but chose to postpone it and concentrate instead on the potential causes, whilst on 200mgs Flecainide per day.

Good luck and if you are determined to get something positive out of AF it is possible to improve the rest of your health significantly, which without this incentive you may never have done!

[Tototcx in reply to Hidden]

So nice to read something positive orchard worker. Thank you thank you thank you xxxx.

[Eliza2 in reply to Tototcx]

I take 300mg and my heart has started having some extra beats which are making me so very distressed since I just had my ablation a week ago. I would never miss a pill since I know it can calm down the extra beats. Everyone says the extra beats are common but I get very anxious..........Here's hoping........this is distressing since I'm nauseous all the time too from the medication. Does anyone have some good remedies for nauseous??? I'm willing to put up with the nauseous if it will keep my afib away. I wait in anxiety trying hard to think about something else. What a monster this afib is. EP did extensive work on me last week so I'm trying to have faith in his work as being more powerful than the afib enemy and I know the healing will cause the extra beats. Hard to keep faith that it will be ok.

[Tototcx in reply to Eliza2]

Oh Ronnie. Big hugs . I haven't had an ablation but from reading on here it seems to take some time for everything to heal and calm down . I feel for you . I'm getting extra beats all day today and feel rubbish too . Hopefully someone who's had one can comment xx

[Eliza2 in reply to Tototcx]

You are a sweetie thanks toto!

[Tototcx]

Thanks for everyone's concern re dosage. The maximum dose is 300mg for a supra ventricular tachycardia which is what AF causes because the rogue impulses start outside the ventricles but the books say you can go up to 400mg per day if it's a ventricular tachycardia. We did discuss this and he says that he's not overly concerned at me going up to 400mg (hopefully not every day) as I'm quite overweight and it affects the blood level. So there's my admission 😣😣 I'm mortified ! However I've got the biggest motivation now to shift some of this weight and this will definitely help too . Bit embarrassed 😔

Having said all this I got another episode last night. Reverted in about 3 hrs.

Doesn't really fill me with confidence I have to say 😣

[Eliza2 in reply to Tototcx]

I know. The anxiety of will it come back will it go away fills one with dread. Good luck with your weight. The healthier you can be can only help. I'm working on that confidence piece.........I have basically none. Always worried.

[Eliza2 in reply to Tototcx]

Does anyone feel the nauseous I feel now that I'm increased dosage of flecinide to 300. Does anything help this?????? I really don't want to decrease or change medication right after my ablation since I'm trying to give it best odds of success. I also take cardizam which also contributes to nauseous feeling. Does body get used to it and adapt? Lots of crackers and yogurt.........only things I can get down.

[Bagrat in reply to Eliza2]

I was going to suggest ginger biscuits or lemon and ginger tea. Don't know if you have come across sea bands. They have them in Boots. originally for motion sickness. They sit on your wrist over an anti nausea pressure point. If you put two fingers on your arm by the point where your wrist creases the pressure point is next to that between the two tendons(guiders). You can press on this point to relieve nausea.

Works for some chemo nausea, so may work for other meds. Nothing to lose.

Hope you adapt to it soon Wendy B

[afibs]

Flecainide on max dosage (300mg a day) will typically be subscribed as 2x150mg a day because of the prolong plasma half life (20 hours).

Regarding PIP,

"Doctors may recommend the "pill in the pocket" approach for people with paroxysmal atrial fibrillation. With this approach, you can take a single dose of an antiarrhythmic drug when you feel palpitations instead of taking the medicine every day."

(webmd.com/heart-disease/atr...

You got 100mgx3+potential 100mg as PIP, this might be toxic and lethal in certain circumstances!

(en.wikipedia.org/wiki/Fleca...

I read some of your past posts and the "breakthrough palpitations" you described are most likely because of the proarrhythmic effect of Flecainide. Bisoprolol should decrease these but you will need to take it daily and probably raise the dosage a bit to 2.5mg or even a bit more as the more Flecainide you'll metabolise the more proarrhythmic effect you might feel...

If I were you I would stay with your old dosage and try the bisoprolol to test things up while searching for a second opinion from a different (real?) EP ASAP.

[Tototcx in reply to afibs]

Hi afibs

Thanks for your concern . It's very difficult when someone you don't really know thinks you should do something different from the cardiologist electrophysiologist I saw on Tuesday 😕 Do you have any clinical experience to enable you to override his expertise? The man is the top EP in Scotland and studied for years in philadelphia I think or Chicago. Just curious as to why you think differently ☺

[Bagrat in reply to afibs]

Interesting. I understood the half life could be anything from 12 -27 hours with regular use. Which still supports your comment afibs re 12 hourly dosage.

ncbi.nlm.nih.gov/pubmed/636...

Also happy to read in the above article neither food nor antacid affects the extent of absorption. Still with my usual proviso that reading academic research is a minefield for anyone with only a modicum of academic acumen like me!!

[Tototcx in reply to Bagrat]

Yes half life is 12-20 something hours but I keep getting breakthrough in the afternoons hence the 3x daily dose . I might be a fast metaboliser . just have to wait and see how it goes . I'm fed up with it though tbh 😣

[Eliza2 in reply to Bagrat]

Well reading material can be dangerous especially when people are quoting webmd and Wikipedia as some sort of scientific journal with reliable science to back it up.

[Rellim296]

Firstly, Tototcx, good luck, but what can your EP be waiting for? Why is it too early for an ablation? And how long is his waiting list? I went on mine's long waiting list not because I needed an ablation right away but because I might need one when I get to the top.

Secondly I've read the discussion about 300mgs of flecainide being the limit in 24 hours with some I don't know what. Not alarm exactly because I don't take it now, except as a PIP. I was on 150mgs x 2 of flecainide before my ablation and quite often took extra to stop a bout of AF. I once took 150mgs at 11pm and woke with AF at 6am, forgot I wasn't taking flecainide at 6am and 6pm and took 150mgs plus an extra 50. Thus 350mgs in 7 hours. It worked a treat. I could only take 50mgs that night (believing that 400mgs was the daily limit) thinking I'd wake in AF again. But no. All seemed fine. If 300mgs of flecainide is the limit in a day and it's one's daily dose what does one do to zap AF when it occurs?

[Rellim296 in reply to Rellim296]

Just as an afterthought here, because I have previously mentioned having numb feet which are thought to be as a result of taking flecainide, my toes had already gone and it was creeping towards my ankles when I was on 100mgs x 2 a day.

[Tototcx in reply to Rellim296]

Oo er ! I've not notices this although my eyesight is worse and my EP says it's common too. We'll see how it goes ☺

[Rellim296 in reply to Tototcx]

Flecainide is wonderful stuff and I'm not sorry I used to take it but it does have downsides and I'm glad to have been able to give it up.

Incidentally, on the weight issue, I'm not a large person. When I was knocking back the flecainide in quantity it was not a happy time in any direction and I was beginning to be bothered about a dropping BMI which was heading for the teens.

[Tototcx in reply to Rellim296]

My 'go to ' comfort is food unfortunately . My AF has escalated since May when a close relative has been diagnosed with terminal cancer and my workplace went pear shaped 😣 I've been off sick since June but the AF has got worse and unfortunately I've been chomping on cake! I can't work until I'm stabilised so that's me at the moment . People say AF isn't life threatening but it's certainly changed my life totally.

[Rellim296 in reply to Tototcx]

In short, you're having a time that's not happy in any direction. Terminal cancer is a difficult one, but I once saw a girl in her twenties on I think it was a Wogan Best Bits compilation and she had since died. She was saying that the last two years had been the worst in her life but they had also been the best in her life because she had seized opportunities. I remember when my mother was dying we pushed the boat out and had a memorable family holiday with her and bad though it is, a shortage of future doesn't half galvanise the desire to make the most of it if one can see the glass half full.

I hope you can feel driven now towards lots of positive steps. Yes, AF can change your life totally but as orchardworker says, it can bring benefits too. All the best! Keep those gloves on!

[Tototcx in reply to Rellim296]

Thanks again rellim. We're all trying to maintain normality as much as we can. Ach it could be worse . Think I feel wierd today because of the new bisoprolol too . See how it pans out ☺

[Rellim296 in reply to Tototcx]

I've never taken bisoprolol but it's clearly well liked by doctors! Normality is fine but do relish having your loved one with you and yes, it could be much worse. People get carried off suddenly and leave us behind without warning and no one has time to have made any adjustments.

[Tototcx]

Rellim

Many thanks for your reply ...its helped me enormously xxx

My confession here is that presently I'm too heavy for an ablation. The risks of complications at my current weight far outweigh any benefit so I've been sent away to lose weight basically with the hope that the drugs can keep it at bay . My EP thinks this will probably get rid of it anyway so there you're go! I need support and encouragement and not retribution so I hope I don't get any nasty replies!

[Rellim296 in reply to Tototcx]

Well, good luck with that. I met someone the other day who had lost nearly five stone on some diet and she looked terrific. I think it was her husband who was advised to lose weight and they did it together. Don't know what they did nor how long it took. I think biscuits, crisps and chips plus sugary drinks had featured significantly in their former lifestyle. There's a five and two diet that someone else I know was following with success.

I confess to having put on weight since giving up warfarin because I am so enjoying the freedom.

[Tototcx in reply to Rellim296]

Thanks rellim. Nothing like a bout of AF to put you off the cake believe me!! The gloves are on and the fight has started 😠

[Rellim296 in reply to Tototcx]

Excellent!

[Polski in reply to Tototcx]

You might want to look at the Low GL diet recommended by Patrick Holford. The principles there seem to be very effective. Also avoiding processed food seems to be recommended by many different diets, and should help the way towards a healthier life-style and less AF.

[Tototcx in reply to Polski]

Thank you polski for your time and reply. I will have a look at it. Highly motivated just now ☺

[PeterWh in reply to Tototcx]

I was going to pm you because I suspected that weight was the main issue. By admitting it in public is the best way to step forward. Weight is one of the key six triggers and stimulants. Key things to cut out are all processed foods, salt, sugar, alcohol, etc though I suspect that you have already been told this. Good luck.

[Tototcx in reply to PeterWh]

Could you tell me the six key triggers or risk factors please.

All beige food has been eliminated from the house and I gave my Hendricks gin to my son! Bought some Truvia for my bran flakes. This is WAR lol!