Oh bugger.....

[booboo73]

I can't believe it...bloody started again 150bpm since 7pm. I took a flec at 9am as normal then another at 7pm when it started along with 2.5 bisoprolol. I am allowed 300mg a day of flec so when can take another....when is safe to take it please??? Its been 3and a half hours since last 100 mg???

Im am soooo fed up now....supposed to be going to Scarborough tomorrow and its 3 years today since my precious Mum died and I really thought the Flec was working...I am so sick of this now x x

[jan-ran]

Aaw sorry you re stressed once more. You could try ringing 111 and asking for advice re how much more flec to take. You ve had 200 so far, and you could take 100 before 9 am tomorrow. Tricky situation. Best ask an expert. With you in thoughts. You could take another dose of bisoprolol, that helps heart rate rather than rhythm. But ask first. Jan R

[booboo73 in reply to jan-ran]

Thanks Jan - Well I just took one anyway at 11 and it's not done any good so it looks like A&E for me - Will give it a couple of hours and make my merry way down there! Just scared now that there isn't any more options as I am not sure I can have an ablation as I had a hole in the heart repaired as I child - all successful and my heart is structurally fine but not 100% until I see my specialist! xxxxxxxx

[nikonBlue]

hi there,

I too am on flecainide and after having surgery in october (breast cancer....all looking good now tho) I went into a 3 day episode of AF. When I phoned for advice from my own GP she told me it was ok to take an 'extra' 50mg making up a total of 400 per 24hrs. I take my 'normal' dose of 150 in the morning and the same at night. She was checking the 'allowed' dosage while on the phone to me so am assuming it's ok. However, it seems in my case that the actual medication can take around an HOUR to work.....but oh the joy when that AF episode stops eh? Do check this with your own GP but I thought i'd let you know what I was told and so far since then I've had 3/4 times where I've reached for that wee extra 50....and it does the trick....after an hour!!! Good luck

Blue

[booboo73 in reply to nikonBlue]

Thank you for that Blue, you really have been through the mill - wishing all the luck for a happy and healthy New Year!! xxx

[Kiwi2]

Hi, the only way flecanine works quickly for me is if I take 200mg in one go and then it stops within 90 minutes. Hope this helps. Check that this is ok for you to do first

[booboo73 in reply to Kiwi2]

Hi Kiwi, Yes I am thinking that too - a big dose to give it a huge kick up the ass!! x x

[heartmatters1 in reply to Kiwi2]

That is what I was told too & it helped me.

Happy AF free year to you all x

[Hidden]

Now you have built up some track record, I would say you need clear advice from your cardiologist/EP asap to go onto a possible regular higher dose of Flecainide rather than topping up with PIP - probably 200mg/day dependant on how the Bisoprolol affects things. I am just on Flec and my cardio favours an even dose not up and down each day or during the day. I would pay privately for a quick result, it's well worth it.

Hope you get to Scarborough, had some good times there in the 70"s watching bands at the Penthouse and cricket at the annual festival.

Good luck!

[booboo73 in reply to Hidden]

Hi, thanks for that x yes I am on 100 x 2 daily and I am thinking it would be better to have a bigger dose at once x x

[Julie23]

Hi there I too keep going into a/f its rubbishy I am now waiting to hav my second ablation any day I have been n and out of hospital in total this year alone 12 times i am now finding this very scary and it does affect your lifestyle and your family's too my daughters are scared to leave grandchildren with me in case I have an episode so I just wanted to say keep going I too feel this cannot go on forever hope you get to Scarborough.

[booboo73 in reply to Julie23]

HI Julie, yes its bloody horrible the way it messes with our lives. I am a different person since I was diagnosed - I am trying really hard to be positive but I must say its getting harder now! xx Sending you best wishes x x

[Fenderman]

So sorry to learn your news sara i know exactly how you are feelng.

I hope things improve and that you get to scarborough.i keep saying to my wife lets go to seaside but not made it this year. You cant beat a nice walk along marine drive with the smell of sea air in your lungs.

You are not alone remember that.

Regards

Rich

[booboo73 in reply to Fenderman]

Hi love, Thank you! Yes even when I feel really bad I know I am not alone - I just lay in bed and look through this forum - I have always used the internet for advice but i must say this is the most genuine and helpful one x

[Fenderman in reply to booboo73]

Yes i agree its a good site with very caring people.

Ive come to bed early to read whilstwife chatsaway with her mum.take care hope you have a better night

Rich

[Fenderman in reply to booboo73]

Not seen any posts from you sara are you feeling ok and did you get to sunny scarborough?

[robboian]

Hi, feeling so sorry about your situation. You are obviously stressed out and this is understandable. If you don't have confidence in the medical staff that are advising you, can you get a referral elsewhere? Even if an ablation is out of the question as you suspect at least you will be sure and confident.

[booboo73 in reply to robboian]

HI Robbo - Yes I plan do do lots of research and weigh up my options. I think I need to empower myself with dealing with this the best I can. I think if I am confident knowing about it more it will really help me to deal with it! xx

[jan-ran]

How's it going, booboo?

[booboo73 in reply to jan-ran]

HI Jan, I am ok a bit battered mentally and shattered but nearly ready to pick myself up and try to be positive again! Thanks for caring xx

[RoyM]

So sorry to hear that Booboo I do hope you return to a slower HR soon. Hope you get to Scarborough safely. Roy

[booboo73 in reply to RoyM]

Hi Roy, yes I am back to 44bpm and have the energy of a slug!! Thanks for asking xxx

[ILowe]

Be VERY careful about increasing the dosage of Flec. More Flec can make things worse. Things can change over time, so, paradoxically, LESS flec may have a greater effect. I know from experience as well as checking the medical advice, such as the British National Formulary -- you can see this for free in the UK.

When I take Flec as PIP I actually crunch the tablet and wash it down with water. Seems to work quicker.

[Gracey23 in reply to ILowe]

HiLowe , i have been taking Flecanaide for ten years and recently EP increased it to 300mgs daily as I was getting episodes. You mentioned that Flecanaide can make things worse, could you please explain? I feel that the Flecanaide is making me feel different in many ways and would love to hear what you have to say.

[ILowe in reply to Gracey23]

In the British National Formulary, the second side effect listed is "pro-arrhythmic effects". This is medical speak for saying that Flec can provoke rhythm problems. Like many medicines, there is an optimal dosage: too little and the original problem is not tackled, too much and similar problems develop.

Also note that the BNF recommends striving for the minimum dosage that has beneficial effect.

Now, over time, with many drugs, the body can re-adjust. Again, it can go both ways. Sometimes you get LESS sensitive, therefore need more. Pain medicines are often like that. Flec often functions this way -- you get habituated to it. But, not always. Sometimes you become MORE sensitive, and the answer is to take less. How to decide is difficult, and often comes down to trying the safest course of action first. Fortunately, Flec is relatively quick acting and quick disappearing therefore you can experiment, but, if you do, do so with SMALL changes.

Personal experience of needed lower dosage:

In my case, pre-AF days, one season, my rhythm problems increased and I increased the Flec dosage, and things still did not improve -- in fact they got worse. So, I went chagrined to my consultant and ate humble pie and admitted what I had done with my meds. He, with a smile, reminded me that Flec can make things worse (as I should have known) and promptly suggested I try two weeks without it. For me, that worked. It was also vital information for a different consultant recently, after successful Cardioversion. She, righly, reasoned that I was one of those quite sensitive to drugs in general, and Flec in particular, therefore, the Pill in the Pocket would be a very low dosage.

Hope this helps you understand. The key to managing doctors I find is to have the right questions. What I usually do is to ask them to 'Think Aloud'. Why is it this way? Why not the other way? Is it possible that..? What about X Y ? I have even brought with me printed copies of Research Articles and asked them to comment on them. I also explain my preference for low meds and putting up with a few minor inconveniences.

So, in your case, you could ask something like: What does the BNF "pro-arrhythmic effects" mean? Could, in my case, a reduction in dosage have a a desired effect?

[PeterWh in reply to ILowe]

Very well explained. My GP's approach is to minimise the amount and the number if them if at all possible. That was why in the early days after diagnosis she said that ablation should seriously be considered as often it eliminated the necessity of taking medicines and that must be good.

[Beta44]

The taste of Flecainide is astonishingly powerful and unpleasant. I would never have been able to crunch it up. My formula was 2x100 daily plus an extra 100 when an episode started and worked well for years. When the episodes became too frequent ablation seemed better than any of he alternatives and was life transforming.

Peter

[ILowe in reply to Beta44]

Taste probably depends on the company that makes the tablets. Mine are made by Meda Pharma, France. I wonder about the new capsules which are supposed to be slow long acting delivery. I suspect if I cracked that open and put it in a drink, that would act quickly too.