Hello all. I am an avid reader of this forum but haven't made many comments. I have A.F. but my drugs (flecinide and bisoporol)

[imperial]

are not effective. I have had 3 ablations and tried many different drugs. I was wondering if anyone has come off all medication and felt better than on them. I'm sure I would feel better without all the problems that come from taking them.

[Hidden]

I'm on bisoprolol but haven't had any ablations... If the drugs aren't working for you I would discuss it with your doctor - hopefully they will be able to suggest something different that will work... Take care and Merry Christmas!

Lis

[gerryatriq]

hi

I have posted before that it sometimes makes me wonder what this is all about.

I can only assume that the bisoprolol is to keep HR under some sort of control?

Why would you take Flecanaide as well?? Esp if it is not controlling the AF, or is it??

I just take bisoprolol at 2.5mg, along with warfarin and aspirin and ramipril. All of these are protective agents except the bisoprolol, and I have been on these BBs for over 10 years an in constant AF, although I do not normally have any symptoms nor do I ever feel the AF at all. Of course I cannot do any exertion without being immediately knackered, nor walk up any incline without the heart starts pounding away, then feel terrible and have to have a lie down.

Its hard to think it could be worse without the bisoprolol.

I might suggest a trial next time i see the cardio, although I cannot think it would be sanctioned (but more prob due to litigation that my well being)

[Marion62 in reply to gerryatriq]

Hi gerryatriq,

I was interested to read that you have been on bisoprolol for 10 years and have problems walking uphill.

I too am in permanent AF with no symptoms - but after taking only one 2.5 mg bisoprolol tablet I had pain across my back and was out of breath when I walked up even a slight incline. The dose was halved but I still had problems.

After 6 months I changed to diltiazem, a calcium channel blocker, which suits me much better and I can now walk up most inclines without becoming breathless.

I certainly would have a chat with the cardiologist when you see him next to see if a different medication may suit you better.

Regards

Marion

[gerryatriq in reply to Marion62]

hi

no I have been on bisop only for last 2 years, prior to that it was sotalol. that too seemed to do nothing so I asked for a change, hence bisop.

Strange you should mention a pain in the back, I have had an unexplained pain that will just come and go, for no apparent reason, in the left upper side. I am always thinking it is some type of angina, as i have had 2 stents fitted and the other artery I was told, has a long diffused area that cannot be stented. So it has always concerned me that I am an emergency case waiting to happen.

I mentioned this to my cardio, who I see 2 times a year, `for a chat` !!

No tests were ever carried out, and i was told it was probably muscular in nature. Well having had exactly the same pain in the same place for 3 years I am doubting that it is muscular.

I dont know about the rest of you in the UK, but I have found that the twice yearly cardio meetings that take place in a tiny, local cottage hospital (no other services, cardio just turns up once a month to see local patients in an office ) are really a waste of time as nothing ever gets done. No tests are ever offered, no alternative suggestions made. I am not a good candidate for ablation, having permanent AF for over 10 years, but the possible double trouble of the AF and what is a partially blocked artery makes the situation worse as far as I can see.

Prob is that I always look well, despite being mostly knackered, which I would be if i were not normally waiting to see the cardio for an hour before the allotted time.

I am thinking that its time to change my cardio

[Lucybod]

Have you tried to find out what triggers you off? I have made a diary this year of what I have eaten, how bad my ectopics beat are that day, when I have an AF, what I took, how long it lasted. How I feel etc. I have narrowed it down to adrenaline

Because I get an AF when I have to do something stressful. I have eliminated trigger foods as well. I have gone on a gluten free diet only because my daughter has coeliac disease. I think I may be gluten sensitive. I didn't have an AF for a month until I went on holiday. That could have been psychosomatic. I now don't get indigestion every month.

I keep banging on about finding a cause. There are probably lots of causes but I mean individual causes. Instead of trying to crack a nut with a sledge hammer as they do in this country. Do you know in Belarus they have to find out what's wrong before they treat you, and Flecainade is never administered outside of hospital. The reason is the doctors go to prison!! If they get it wrong. I wouldn't go that far here but it would be nice if our doctors used that approach.

[gerryatriq in reply to Lucybod]

hi

I totally agree with you. I have always made the assumption that food triggers were a complete non starter, situations that cause stress, anxiety are much more likley to trigger adrenaline reactions and in my opinion its the way certain people are able to either `deal or not deal` (sorry...lol) with that.

Adrenaline is the flight or fight hormone that immediately affects the heart muscle. I have always wondered if AF is caused by certain types of us that do not handle this well. In my case I can remember having `palps` as an 11 year old and about to do my 11 plus, on the face of it it never developed into anything, i could do anything at 15-34, until I went through a divorce, that gave me lots of stress, then they appeared again, nowt done. (was 30 years ago) then disappeared again, only to return very slowly without me noticing it over probably many years. Did they ever go away??

Was it that being a very fit young person all other facilities running at 100% that the inefficiencies caused by the AF, finally came thro in older age.

Surely by now with all of the worldwide computing power and logging of everything, it cannot be hard to identify the real issues for AF sufferers.

[mallet-head in reply to gerryatriq]

Hi Gerry

What a succinct summary of how you believe your AF developed!

This is exactly my own experience (minus the divorce bit) and like you, I think these symptoms probably never go away, just lie dormant until something triggers the need for an ECG and it becomes visible from the printouts. I wonder now whether I blamed asthma for my breathlessness and lethargy when it may have been AF all along! I agree, with a concerted effort, that AF could be much better understood and the real issues identified.

Best wishes and a merry Christmas to you,

Mallet-head

[Lucybod in reply to gerryatriq]

It's all got worse since I retired with not enough to think about. I don't start an AF when I am engrossed in something. Only when I am worrying. It may be why yoga and tai chi are thought to improve AF frequency. I find my tai chi class relaxes me a lot.

I am sure my frequency of AF got worse when I started Bisoprolol. I have reduced it from 2.5 to 1.5 myself and I haven't got worse but have improved lately.

[Katharine353]

Hi there

After having tried numerous medications I decided with my EP that they didn't suit me. I have a low heart rate anyway and the medication, particularly bisoprolol, reduced my heart rate to the extent that I could barely get out of bed.

I have had two ablations and whilst the second one seemed to have fixed the AF I think it has now come back. I have medication for emergencies but choose not to take it. I would rather feel the AF than be in a medicated haze where I find it impossible to do anything or even think straight.

[Lucybod in reply to Katharine353]

My friend who is a consultant from Belarus who told me what happens over there told me, you can live for years with AF but it's the drugs that could kill you. It nearly did to me.

[pip_pip in reply to Lucybod]

Too true. I've had serious problems with flecainide, (blanked out , a week in hospital, and six weeks to settle my head after TWO doses). Digoxin was torture, and Propopfenone Made my AF so bad another week in hospital. I found Bisoprolol Very Good, but it does tire me, worse still it makes you wonder 'why bother' which is well known.

However i do feel my heartbeat , quite badly at times, more so since the ablations, which helped no end. Hard beating, which a lot of people here don't seem to be aware of. Lucky lot !

Merry xmas.

Pip.

[Lucybod in reply to pip_pip]

I started an AF when I sat down to christmas dinner! I usually have 3 flec but after my near death experience I haven't taken any. I still have it 30 plus hours later. My Bpm are around 60 with a miss and about 3 catching up beats. I took 1.25 of Bisoprolol this morning. I have been for 2 walks and jogged about 100yds with no ill effects ( sometimes if I make my heart go faster it will go back to sinus but not today). I have drunk copious glasses of pomegranate and other thinning drinks and just hope it will go back. It's the longest time I have had it. Oh well I'm not going to worry any more. My friend has reassured me it's ok at 60bpm and not to take flec. Going to see the GP on Monday so let's hope it's stopped by then.

[forestoke in reply to Lucybod]

Hi Lucybod trust you have had a good christmas.

Would you mind if i could ask you a thing or two?.

I am awaiting my 2nd Ablation and since coming off the amiodarone last august on the aniversary of the 1st ablation i have had two bad af bouts and funnily enough the second one was on xmas eve and has lasted the longest and went into hospital for two days day after boxing day as they were about to shock it back but it reversed itself.

Now what i would like to ask is what was your near death episode about? and i have just been prescribed ``the pill in the pocket`` flec to take when i feel af coming on, as this is a half way house whilst waiting for my next ablation, though i am thinking and weighing up on just going for a pacemaker ??.

Thanks in advance

Paul

[Lucybod in reply to forestoke]

Hi

A couple weeks ago, I started off an AF. ( my AF's are not fast heart beat ones which is the main reason why it was so dangerous for me. )My heart doesn't go above 90 when in AF. I took 150 mg the prescribed dose , After 15hrs I took another 50mg and I thought it was safe to take another 100mg. About 15mins later heart went back to sinus. About an hour later I decided to go to Sainsburys. I collapsed at the check out, no pulse and stopped breathing. Luckily a nurse was there and gave me CPR and I came round. I had already taken my usual dose of Bisoprolol as well. I went to see a new GP today and he said I should not be on Bisoprolol and should only take the flec if my heart rate is very fast. I kept telling the doctors I didn't have a fast heart rate, they didn't listen. Lucky escape. If you have the fast AF flec is ok.

[bnewman77]

Hi, no recommendations here, but have had persistant afib for 30 years or more, tried metopropol, felt tired all the time, same thing with adalat, these may have different names in U.K.I am in Canada.I stopped taking everything bought an eliptical trainer, do 20 minutes,5 k a day, have energy now , run up stairs etc,stopped alcohol and coffee,late night eating, feel great, worked for me.

[Hidden]

Only drug known so far to work on me is propafenone. Although I haven't tried that many. Flecainide gives me palpitations, and bisoprolol just makes me feel drugged and lifeless and doesn't do anything good in return.

Good luck with it, let us know if you get anywhere.

Koll

[Lucybod]

After nearly two days in AF I have just got rid of it by going on a strenuous walk. I have found my heart is beating at around 75 now it's in sinus, it was much slower before.

[Hidden in reply to Lucybod]

Well done Lucy. It must have been the thought of that delicious Christmas dinner that set you off, good stress. I usually have some problems over Christmas, but this year I was OK as it happens.

Maybe I was OK because we cheated meal-wise and bought the whole Christmas meal, pud, cheese, everything from Marks & Spencer, all in a box. It was yummy and stress-free.

Regards

Koll

[mallet-head]

Hi Imperial

It's all about the " risks vs the benefits " isn't it? To come all meds might allow you to feel better in the short term, but the meds generally are to reduce your risk of strokes, due the potential formation of clots in the ventricles because of the AF. I would discuss with your GP or EP rather than make a unilateral decision. There may be other meds that you would be better suited to.

Hope you get sorted out soon.,

Mallet-head