Flecainide: I have been prescribed... - Atrial Fibrillati...

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Flecainide

Lizty profile image
39 Replies

I have been prescribed Flecainide pill in pocket by a new cardiologist. This is to 'treat' my 'hypotension' attacks which we think are caused by spasms of atrial fibrillation. However I would be interested if anyone else gets the symptoms I have and have had now for about a year. I get a short arrhythmia run after eating, or if I am standing for a short while after a tiring day, and I 'hit the floor.' That is... my bp drops and I go down. I am not sure how flecainide is going to help because these spasms come out of the blue and although I now know the triggers, they pass quite quickly. I have checked the side effects of Flecainide and noted that these can be quite debilitating too. Has anyone else had the symptoms I describe? I have now been told they are not dangerous as they only last a few seconds. But it only takes a few seconds to slide to the floor! That said, nobody can really explain the mechanism which causes these falls other than a sudden bp drop.

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Lizty
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39 Replies
jeanjeannie50 profile image
jeanjeannie50

Hi Litzy

Low BP can sometimes be caused by lack of drinking enough fluid throughout the day.

Also I found that once I started with AF (19 years ago) I could never eat a large meal lunch time without it causing AF as soon as I got up from the table and started moving around.

Jean

Lizty profile image
Lizty in reply to jeanjeannie50

Hi Jean.... thanks for your reply. Yes I am aware of large meals and dehydration being triggers.... so I avoid both. But it is the 'sliding to the floor' in a semi faint which is unpredictable...and embarrassing.... and which no=one else seems to experience...!

Tommyboy21 profile image
Tommyboy21 in reply to Lizty

I got weird spasms. It's like my spine gets so acutely tight causing an electric tingling sensation. I go into af. Then converting back to nsr I feel a surge then a spasm for a few seconds causing me too hold on to something or reach the ground. This stopped with an ablation. Tingling still comes and goes.

Lizty profile image
Lizty in reply to Tommyboy21

Yes…that is almost the same for me. Ablatio then I guess! Thanks..

Desertflowerchild profile image
Desertflowerchild in reply to Lizty

I had it happen once recently. I had been in afib for hours, went outside in the early morning. It was freezing with a deep snow. When I headed back to the house (uphill from where I was), it suddenly felt like I was slogging through molasses, my sight narrowed, and I was fighting as hard as I could not to faint in the snow, but to get back into the house. I barely managed and collapsed on a bed. I felt tingling/buzzing in both arms from the elbows to the fingertips (my EP said likely from regaining blood flow). Later when I looked at my garmin watch, I could see that the incident corresponded to coverting from afib to nsr. My EP said my heart paused and explained how this happens. She said the conversion pause could be dangerous depending on what I was doing (not so bad lying in bed reading a book, but potentially fatal if driving).

Lizty profile image
Lizty in reply to Desertflowerchild

Sounds terrible! Fortunately mine much less severe but explanation sounds feasible…especially if plodding through snow!

jeanjeannie50 profile image
jeanjeannie50

A few times in the past I've felt my head go dizzily strange and thought I was going to black over and pass out, but just on the point of doing so I suddenly come back to full awareness. This could happen even if I was sat down.

I've heard other people on this forum say they've had the same thing. I can only assume that its the heart not beating as it should and our bodies not getting enough oxygen. Mine only happened once or twice a year, are yours more often? I must admit I never mentioned it to anyone.

Jean

Lizty profile image
Lizty in reply to jeanjeannie50

Reassuring to know I am not the only one! Yes, for the last year I have had these on a regular basis. Worse when I am tired and alcohol is a complete no no. I get a few weeks relief and then they are back with a vengeance. Hence the new prescription of Flecainide? But I got the feeling from the Cardio that he wasn't quite sure of the mechanism. Guess it is just a peculiarity of my own afib.... But Jeanie, did you ever 'hit the floor?' during one of these incidents?

Paulbounce profile image
Paulbounce

Copy and Paste here Liz

Paul

It sounds like you're experiencing episodes of syncope (fainting) possibly triggered by hypotension (low blood pressure) associated with what you suspect to be atrial fibrillation. The medication prescribed to you, Flecainide, is commonly used to treat irregular heartbeats, including atrial fibrillation.

However, it's understandable that you're concerned about the effectiveness of Flecainide in managing these specific symptoms, especially since the episodes seem to occur suddenly and transiently, making it challenging to predict and treat in the moment. Additionally, you're rightfully cautious about the potential side effects of Flecainide.

Given your concerns, it might be helpful to discuss your symptoms and treatment plan further with your cardiologist. They can provide more insight into how Flecainide may help manage your symptoms and address any concerns you have about its potential side effects. Additionally, they might explore other treatment options or lifestyle modifications that could help reduce the frequency or severity of your episodes.

It's also worth considering seeking a second opinion from another cardiologist or a specialist in syncope management if you're uncertain about the current approach to your treatment.

As for whether others have experienced similar symptoms, it's possible that there are individuals who have experienced syncope related to atrial fibrillation or other cardiac conditions. However, each person's experience can vary, and it's essential to work closely with your doctor to find the most appropriate treatment plan for you.

Lizty profile image
Lizty in reply to Paulbounce

Hi Paul.... you have it in a nutshell I think. I will see if I can arrange a follow up with an EP.

In all fairness to the cardiologist, he did suggest a second ablation... which I wanted to postpone for the moment as I have ongoing caring responsibilities. I think I was also alarmed that the syncope might be related to some other condition. So the syncope management advice is also a useful line.....thanks for your advice.

bean_counter27 profile image
bean_counter27

AF reduces your heart's performance and efficiency, which can result in lower than normal blood pressure. If blood pressure drops enough your brain doesn't get enough blood and fainting can occur.

Has all of this been captured on measuring devices or is that what the doctor thinks is happening?

Lizty profile image
Lizty in reply to bean_counter27

Had a seven day monitor and it picked up a range of arrhythmias. The feedback was that the heartbeat gaps were only a few seconds so they didn't rate them dangerous.....guess the skipped beats are the problem...

bean_counter27 profile image
bean_counter27 in reply to Lizty

I presume your cardiologist used the monitor results to conclude the "spasms of atrial fibrillation" were occurring when you had your 'hypotension' attacks.

Am I right in concluding from your description that you have several very short episodes of AF close together? If the total event (from the first episode to the last) is relatively short lived then it could all be over before you get to take your Flecainide let alone before the Flecainide started working. So presumably, I've misunderstood what is happening.

As for Flecainide itself, we're all different and you're more likely to hear about the users who have had problems with it than those who don't. I take 150mg twice a day and have for several years without any noticeable side effects.

Lizty profile image
Lizty in reply to bean_counter27

Thanks BC .... yes, you are spot on.....never/more than one in a day! But am going to try a low dose over Easter week and see if any effect! Great that it works for you... fingers crossed....

secondtry profile image
secondtry

I would book a private appointment second opinion with another cardiologist.

Popepaul profile image
Popepaul

I have experienced pre syncope about 8 times over the last 2 years. Full syncope once. I came around when I was on the floor. I think that it was caused by a drop in BP. During afib the BP can become labile and the heart can have pauses. I would assume that flecanaide was prescribed to prevent afib which is likely to be causative for the syncope. If you do have a full fainting experience you are obliged to inform DVLA and not to drive for 6 months. It will also affect travel insurance.

Bisoprolol has been helpful.

Lizty profile image
Lizty in reply to Popepaul

Never fainted, but was initially told not to drive. Can't take bisoprolol as my bp always drops when I am tired and as it is at the lowest level of normal anyway, which is one good thing!,,, bisoprolol just makes things worse. It's a second ablation now, I think. Off to see EP..

Singwell profile image
Singwell

Paul's advice is great. You are experiencing syncope and the post food part is vasovagal- HRCan increase while you move into rest and digest mode. I get heart events sometimes whilst eating!! There's advice on the British Heart Foundation about syncope. Personally I found Flecainide useful. You might just need a low maintenance dose but check the reasoning with your cardiologist.

Lizty profile image
Lizty in reply to Singwell

Thank you ..... will check BHF. Will try the low dose prescribed for the moment, I think.

Weeloula profile image
Weeloula

Hi Litzy

what you describe is very similar to my symptoms with blood pressure plummeting and causing syncope ..my treatment was getting a pacemaker fitted and also I take Bisoprolol daily no syncope since pacemaker placement x

Lizty profile image
Lizty in reply to Weeloula

Think this might be my second reply! Yes, I wondered about the pacemaker option.... my father had one ...

Lizty profile image
Lizty in reply to Weeloula

DId you have atrial fib or atrial flutter... and did the cardio suggest an ablation at any time?

Weeloula profile image
Weeloula in reply to Lizty

Yes atrial fibrillation and think when trying to right itself to nsr caused pauses ..my cardiologist did not even mention ablation

Vonnegut profile image
Vonnegut

Flecainide is an anti arrhythmia drug and I don’t think it is for high blood pressure if that is what you have. A Kardia might help you as it can distinguish several things your heart might get up to but I’m not sure that it does hypertension, if that is what you have. I also have a blood pressure machine that we bought before I knew about Kardias. It’s useful to be able to check these things yourself given how difficult it has become now to get to see a doctor in the UK now!

Lizty profile image
Lizty in reply to Vonnegut

Got all the gadgets you mention...... and along with advice am managing 'around' the doctors!

MWIC profile image
MWIC

I used to have events where a sort of wave passed through my head and I felt as though I was going to pass out - only happened rarely once maybe twice a year but scared the hell out of me - way more than the AFib - never actually passed out and tbh never got an explanation as to what caused it but definitely linked to the AFib - Honestly feel for you as bloody terrifying - hope you get to the bottom of it

Lizty profile image
Lizty in reply to MWIC

I think this has always happened when my body has been under stress.... even when much younger. Had a couple of nasty ones 8 years ago which triggered the cardio appointment... but disappointed they are back. Thanks for your sympathy!

Lizty profile image
Lizty

Thanks... got a Kardia... thinking of getting an Apple Watch... or a cheaper version!! No not high blood pressure... labile I think.

Have you had any investigations? ECG monitoring of some sort? If not, see a better Cardiologist.

Lizty profile image
Lizty

Lot of tests..... limited conversation!

mcpacs profile image
mcpacs

Sounds like you need to get on a cardiologist ordered heart monitor. For example, a 48 hour, or longer, Holter monitor should catch what your heart is doing during these syncope events.

FitnessGotFibbed profile image
FitnessGotFibbed

Flecainide can sometimes bring people back into normal rhythm. For me, it's wonderful at preventing the AF from coming on. Flecainide concentration in the blood will peak 4 to 6 hours after you take the pill. So, to prevent an AF episode, I take it a few hours before the episode is expected.

Lizty profile image
Lizty in reply to FitnessGotFibbed

Thanks. Will try that!

Tapanac profile image
Tapanac

yes I know EXACTLY what you mean. The worst was sitting at the table sfter a piece of toast at breakfast I passed out for probably less than 5 seconds but enough to be scary. Thst was the last time after so many episodes where I thought I was “going”. Light headed, hot and weak

I was taken into hospital and it wasn’t so much my BP but my heart rate kept suddenly dropping to under 30 then would revert to about 45. Anyway obviously the afib and bouts of tachycardia didn’t help

I was given a pacemaker which helped and no more lightheaded or fainting (🤞). I did have covid a few weeks ago which upset things but the trusty flecainide put a stop to that.

To me over the years my medication of flecainide 50 x twice a day, apixaban and bisoprolol 1.25 has been great snd so far I have avoided a second ablation which should have been a left sided radial something or other which my EP said was a bit risky!!!!!!

So in a long winded answer to your question no side effects from flecainide only good results

All the best

Lizty profile image
Lizty in reply to Tapanac

All very useful information…thanks!

execz1 profile image
execz1

Hello Litzy,

I will start by saying that I am not a medical professional, I am just another afib patient. Your symptoms may indicate that you may have heart pauses exceeding 3 seconds or higher. You need to wear a heart monitor for few days to confirm or rule it out. If confirmed a pace maker would be the answer if not then it is another puzzle for your doctor.

Good luck

Lizty profile image
Lizty in reply to execz1

Thanks…

Sozo profile image
Sozo

There are four different categories of sudden low blood pressure. Three fits your symptoms. One in particular called - postprandial hypotension. Maybe this will help with your reseach. :) As far the flacanide, yes it too can have ill effects. Blessings..

mhoam profile image
mhoam

I have fainted a couple of times when in AF, once was in hospital which resulted in a CT scan to ensure I didn’t have a bleed on the brain.

My cardio nurse suggested the website stopfainting dot com, this explains how and why we faint and gives strategies to cope. It is created by a team at Imperial NHS Trust in London so a reputable organisation.

I found it very helpful

Good luck

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