Flecainide: I woke up yesterday morning... - Atrial Fibrillati...

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Flecainide

joebob profile image
47 Replies

I woke up yesterday morning at about 1am back in AF, so i took an extra bisoprolol and gave it until morning to see if it went on its own.

It didn't so I ended up at Glenfield Hospital at about 11am where they gave me a successful chemical Cardioversion using Flecainide and kept me in over night for observation.

I'm back home now with instructions to take 100mg of Flecainide daily.

Does anyone else take this medication? Anything I should be aware of etc?

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joebob
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47 Replies
Azbycx profile image
Azbycx

Hi Joe Bob, I take 100 mg flecinide twice a day and 2.5 Bisoprolol ,sometimes I get drowsy ,a sort of heaviness comes over me ,apart from that I am fine ,hopefully you won't get that ,you are on a lesser dose .Brian

BrettonLass profile image
BrettonLass

I take Flecainide, Bisoprolol and Digoxin - the only side effect is from the Flec, and that is that it can cause some minor visual disturbances - things can look (very) slightly trippy when I am really tired and most of the time you don't even notice that. Flecainide is good stuff and does what it says on the tin.

Naomi

nikonBlue profile image
nikonBlue in reply to BrettonLass

hi Naomi,

Strangly enough just yesterday I noticed a sudden chamge in my vision which I assumed was me needing new glasses!! I've not long got new ones but didn't think any more of it...until I read this. The fact that my Flec has just been increased to 150mg x2 daily might be the reason for the vision situ. Lordy, is this ok or do I report back to doc? :-(

stay well,

Blue :-)

Rellim296 profile image
Rellim296 in reply to nikonBlue

150mg x 2 is a hefty dose and I now regret taking it for several months as - more than a year after I stopped taking flecainide - I still have numb feet. My toes started to go numb when I had been on 100mgs x2 for a couple of years but the lack of sensation spread rapidly when the dose was increased. It's not a common side effect but I'm not on my own. Some people get sensation back when they stop flecainide.

Having said that, flecainide worked wonderfully well for me for a full year and I still use it occasionally to knock my heart back into NSR.

nikonBlue profile image
nikonBlue in reply to Rellim296

hi, Think I will keep a wee diary of any 'new' side effects! Just been on this higher does for almost 2 weeks now and the other thing thats started to happen is my right hand seems to go into 'cramp' spasms. Related to the dose? I don't know. But will keep a not from now on till next cardiologist appointment.

stay well,

Blue :-)

Rellim296 profile image
Rellim296 in reply to nikonBlue

Yes, I get slight cramp spasms in the hands too. Any change in your sense of taste? Does anything taste like cardboard?

nikonBlue profile image
nikonBlue in reply to Rellim296

hmm,

not sure yet but will try some cardboard for lunch and let you know!!! I jest off course...lets face it we have to keep our sense of humour with all this. Gets really miserable at times eh?

I will take note of that too.

Blue :-)

Rellim296 profile image
Rellim296 in reply to nikonBlue

Yes, don't they say laughter is the best medicine?

But no gain without pain. Flecainide is a powerful drug and it can work really well but I saw an ENT specialist about my sense of taste and he could find no explanation except that it was probably flecainide.

Hard to say how bad my sense of taste is and how much it has improved since I stopped flecainide. I had trouble tasting fresh coriander and cinnamon and most things (apart from some really sharp flavours) just seem bland and as tasty as cardboard.

in reply to BrettonLass

Been on it for 30 years. Only got AF if I forgot to take it or ran out (due to Pharmacy). Never noticed any negative side effects, visual or otherwise. It really is good stuff.

rosyG profile image
rosyG

Good that you have the beta blocker as it's needed with flecanide ( alternative can be a channel blocker if beta blocker is not suitable)

Worked well for me both on a daily basis and PIP, but does cause fatigue/lethargy and for me a visual disturbance when I turned my head. Yes, you do need another medicine to balance it out. That was diltiazem for me. Since ablation, was able to stop.

joebob profile image
joebob in reply to

I've been reading about the pill in the pocket approach and it appeals to me. I've only had two paroxysmal AF episodes since being successfully treated for persistent AF and coming off amiodorone in April. When I do get AF my heart rate goes up to about 100bpm resting and I'm not in too much discomfort, so I'm wondering if they would consider this approach for me?

soupersue profile image
soupersue in reply to joebob

I use it as p in p and am really happy with it, works in about an hour give or take but as episodes were lasting a great deal longer I can survive an hour. My EP prescribed it.

in reply to joebob

check with MD. No easy answers. Even though was doing well on meds, MD recommended I proceed with ablation. Seven weeks post-ablation so far so good. But experienced complications with procedure. So now wonder if it was worth it? We lack a standardized formula to decide who can just stay with meds and who definitely needs ablation.

Thomps95 profile image
Thomps95

I take flecenaide twice a day (50 mg) and haven't noticed any side effects. I haven't had an episode since (18 months).

afsucks profile image
afsucks in reply to Thomps95

That is a does i have just started. I would love to go 18months. What was your frequency before.

Thanks

Thomps95 profile image
Thomps95 in reply to afsucks

I had a low burden to begin with - 4-5 AF attacks per year. But my reply was from 4 years ago - and since you are asking now ... after 4 more years it's still working but not quite as well - when on medication, I now get about 2 episodes per year, each might last 10 hours. So the medication doesn't prevent it entirely - I still need to be careful.

nikonBlue profile image
nikonBlue

hi there,

I take 150mg of Flecainide morning and night having had it increased from 100mg just 2 weeks ago. This was after going into a 14hr 'episode' with my readings on my bp monitor all over the place. I saw my gp next morning and he did an ECG but off course by then I was back in NSR as my morning meds had then kicked in.

I've been on Flacainide since first being diagnosed with PAF and I've had no particular issues with it at all.

Stay well,

Blue :-)

Tototcx profile image
Tototcx

I've just started to take flecainide on a regular basic too. 200mg slow release capsules. I'm not on anything else at all. I noticed a wee bit of dizziness when I first started but that's gone now after about 5 weeks.

RobertELee profile image
RobertELee

Prior to the godsend that is an ablation, I used flecainide as a pill in the pocket. 200mgs when the episode came on. Back in NSR within an hour, every time.

However, in keeping with the progressive nature of AF, there would come a time when it simply wouldn't work anymore. Thankfully, I didn't reach that point.

I take flecainide 50mg twice daily and it really works well for me with no side effects and haven't had any episodes of AF since I started taking flecainide in April.

I take 100mg x2 per day of Flecainide without any other drug as my BP and Pulse are quite low - rechecked no 'balancing drug' with my cardiologist and he said not for me. I have been fine for 17 months after an increase from 50mg to 100mg x2 at the beginning.

CDreamer profile image
CDreamer

I used Flec as a PIP and as a daily dose with and without a beta blocker and it worked well for me.

I have recently become aware of some neurological side effects which a very few people seem to be aware of or suffer from. there was a post about this quite recently on a thread entitled 'Another Newbie'. Evidently Flecainide can cause some neuropathy such as feeling trippy, altered eyesight, loss of feeling in fingertips etc which you should report if this happens to you. It is also used as a drug to treat MS to depress the immune system inside the brain,

I was not aware of any side effects for me when I was taking it and found it helped me continue an almost normal life for a while. As those above have mentioned, a lot of these drugs seem to cease their efficacy in time.

As with any drug, it will have undesired effects in some people, work for some and not others and it will always be an assessment as to the risk versus benefit which is a choice only you can make along with the advice of your doctor.

Treffynnon profile image
Treffynnon

Flec works well for me. I take 100mg twice a day, no beta blocker though.

Tauntonjimbo profile image
Tauntonjimbo

I've been on Flecainide for two months & have no trouble & no return of AF . . . . . 200mg per day, one 100mg tab in the morning an hour before breakfast & 100mg one hour prior to dinner . . . . . suggest you read the leaflet that is in the tablet packet fully . . . . I recommend Flecainide from a layman' point of view.

Eliza2 profile image
Eliza2 in reply to Tauntonjimbo

Did you read kodaska's post about fleccinide ????? I'm in a panic as I take 200mg a day.........

Rellim296 profile image
Rellim296 in reply to Eliza2

Ronnie, that's just a standard dose and I think most people take that without problems. Some people manage with only 50mg x 2 and some (I've been one) get up to 300mg a day. I can put up with numb feet if I also have a heart that doesn't misbehave. I think other arrhythmia drugs may well be if anything more dodgy than flecainide! Where would we all have been 100 years ago? I feel we are very lucky to have the wealth of treatments and expertise that are available to us today.

eleanor--1941 profile image
eleanor--1941

Hello Joebob,

Flecainide is a Beta Blocker,I have been on it since 2012 and it does me very well.

I have Paroxysmal AF which means it is intermittent.

I am prescribed Flecainide as "Pill in the Pocket" so when I have an

Episode of AF I have to take one dose of 300mg ,which works a treat for me,within 40mins to 2hrs my heart is back in rhythm.

I have had AF for 16yrs,I do not let it worry me,I know I have to live with it

and live life best as I can.

Keep well and take the advice of your Cardiologist,you will be fine,keep in touch and let me know how you go.

Best wishes.

Eleanor.

cyrilbarnes profile image
cyrilbarnes in reply to eleanor--1941

Eleanor Flecainide isn’t a beta blocker. Beta blockers work by blocking the effects of stress hormones like adrenaline and so slowing the heart rate. Flecainide on the other hand is an anti arrhythmic drug which works by blocking the sodium ion channels in the heart muscle. This restricts the flow of electricity within the heart, and makes it beat more slowly.

djmnet profile image
djmnet in reply to eleanor--1941

Actually, Flec is an antiarrhythmic not a beta blocker. I've read that it can also cause other, additional arrhythmias.

cyrilbarnes profile image
cyrilbarnes in reply to djmnet

It certainly does. In fact it is used in a lot of countries as a diagnostic drug for patients suspected of having Brugada Syndrome which is a major cause of sudden adult death. It affects the sodium ion channels in the heart, which allow electricity to flow and contract the muscles that pump the blood. During the diagnostic test it is injected in small metered amounts, up to a maximum value, and the ECG monitored for a specific Brugada pattern. A ‘crash tender’ is always in the room in case cardiac arrest occurs. That is why only Cardiologists, and not GP’s, prescribe it – it can be lethal if given in the wrong dose or to the wrong patient. I know this as Brugada is my primary heart problem; Afib developed later, and although not the killer that Brugada is, Afib is a real pain as the drugs for it tend to slow us down and tire us out. All I had for Brugada was an internal pacemaker/defibrillator which allowed me to live a normal life.

Jomama profile image
Jomama in reply to eleanor--1941

Flecainide is not a beta blocker, but can work in conjunction with them and also calcium channel blockers, but doses of either beta or calcium channel must be lowered to accommodate Flecainide since they can slow heart rhythm too much together.

suzytoshoes profile image
suzytoshoes

Hi

I am on flecanide, 50mg twice a day, at first worked very well for me, but Recently i am going into AF every day, have contacted the specialist at the hospital regarding this, I now have to go to the doctors Regarding new tablets, what is Chemical Cardio-version? I have had a Cardioversion but not a chemical one, but Regarding Flecanide it worked very well for me,

hope it does for you too,

Suzy

CDreamer profile image
CDreamer in reply to suzytoshoes

It is a cardio version performed with drugs rather than electrical pads. Flecainide is often used, drugs are delivered through an IV rather than taken orally.

suzytoshoes profile image
suzytoshoes in reply to CDreamer

thank you for letting me know, i have not heard of that before, i had one with electrical pads, which did not help at all I have Asthma too, and have been told they don't like doing it if have Asthma, as not very effective, which mine was not they have now increased my Flecanide to control it,

marykhall3 profile image
marykhall3

I have been on it for months now and no afib mine was very chronic and difficult to treat. While it is not as debilitating as some of the meds I have taken, it does make me feel a little odd and fatiqued. I am sure everyone is different but I am able to tolerate it.

terryw profile image
terryw

Hi Joebob I have been on Flecainide for years and on occasions taken all levels of dosage progressively.Drugs seem to affect different people in different ways, and in my case if I am on 150mg twice a day I eventually start to get dizzy and once I fainted! However since an ablation for flutter I tend to get back into SR on 100 mg x 2. I am a fan of the drug. Terry

Jumper profile image
Jumper

As noted by Rellim296 whose feet got numb I had the same side effect but only after some 8 years on flecainide. Otherwise I had no problem with the drug. It must be quite a rare side effect as I had numerous neurological tests that found no cause for the numbness ( peripheral neuropathy). MRI, bloods, conduction studies. It was only when I had transferred to another drug, propafenone, that the symptoms disappeared.

dedeottie profile image
dedeottie in reply to Jumper

I am on 300mg a day at the moment while I wait for a second ablation. Flecanide at this dose keeps my A.F. well controlled in that I don't have it at all. However it does give me vertigo in the morning up to around 11 0clock which I'm guessing is when my brain adjusts to the effects of the meds. Also at night if I go suddenly from a dark to brightly lit room I get double and multiple vision on the periphery of my vision. When I came off flecanide completely everything returned to normal so nothing permanent. As I don't drive I am prepared to put up with this for a quiet heart. Hopefully I will have some respite from meds if my second ablation lasts.x

Kodaska profile image
Kodaska

Flecainide may be a cardiac blessing, but it can be a neurological curse.

I had a cryo-ablation on May 7. By the end of the month I had serious side effects: dizziness, fatigue, paresthesia in hands and feet, dry mouth, wheezing, and minor visual aberrations. It was bad enough that I stopped taking it on June 13.

On June 19, the sixth day after stopping flec - when it finally cleared my system - my symptoms increase by about a third, and then continued to increase every 2nd or 3rd day thereafter. It appears that possibly flec's effect of suppressing the brain's immune system (i.e., microglial cell activation) may have released some lurking bug, which caused the original side effects. Then, when the flec was out of the bloodstream, the immune system responded by going after both the bug and damage it caused, similar to what happens to people with multiple sclerosis. I've had a string of low-symptom days and it seems that endorphins are making the difference.

Of course, this is a layman's theory, but it does explain what I've experienced.

My input, for what it may be worth, is to avoid flecainide - or any other immunosuppressant - if at all possible. Unless you have a positive test for Lyme disease or something else that can be tested for, there's no way to know if anything harmful is lurking in your brain - something that the immune system is keeping in check. Judging by the rarity of long-term side effects, I'd guess it doesn't happen often. But I'd sure hate to be the one to experience what's happened to me. And if it turns out to be Lyme Neuroborelliosis (caused by the Lyme bacterium), may heaven help you because the medical community cannot.

Eliza2 profile image
Eliza2 in reply to Kodaska

This was the last thing I needed to read to totally freak me out!!!!! This seems to be a lot of conjecture on your part and many of us are on fleccinide .......do any of you out there have any feedback to kodaska?

Kodaska profile image
Kodaska in reply to Eliza2

The only conjecture is my theory of how my side effects happened. I didn't mean to scare anyone, just to share my own experience.

DrewOTB profile image
DrewOTB in reply to Kodaska

Wow. Interesting...to say the least. Do you have any links or additional information on flecainide suppressing the brain's immune system? Thanks

Kodaska profile image
Kodaska in reply to DrewOTB

Here's the link:

ncbi.nlm.nih.gov/pubmed/235...

joebob profile image
joebob

I'm not liking this medication. I get bouts of chest pain and shortness of breath and in the evenings I feel completely spaced out.

KentAF profile image
KentAF

My SVT escalated a couple of times into AF (as far as I know as no one's been able to capture another AF episode) so on 50 mg Flec twice and day and 1.25mg Bisoprolol once a day. Have been going through hell for the past two months with bloating and spikes of high pulse rate and high blood pressure. Please, please has anyone out there experienced the stomach bloating and excessive burping which I feel must be down to the SVT? The Doctor has advised an endoscopy which I don't particularly want to have as I feel it is a side effect of Flecainide, as no one else on here seems to have this side effect, but maybe I'm wrong (?)

PeterWh profile image
PeterWh in reply to KentAF

Not sure it is down to SVT or Flecainide but certainly I sometimes suffer from both stomach bloating and sometimes burping but also flatulence but have days when I have it then nothing for quite a few days.  I have put it down to the AF itself having talked with medics and read articles, etc.  I am in persistent AF and only on Bisoprolol, Digoxin and Warfarin.

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