AF Association is planning an 'ask th... - Atrial Fibrillati...

Atrial Fibrillation Support

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AF Association is planning an 'ask the experts' section in the next newsletter.

AFAssociation1 profile image
31 Replies

We are interested to hear which questions you would like to see answered - these will have to revolve around either 'AF symptom management' or 'living with AF'.

Please comment on this post with your question, and we will pick a selection to ask our experts.

Thank you.

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AFAssociation1
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31 Replies
dedeottie profile image
dedeottie

If I am symptom free due to taking flecanide, does this break the A.F. begets A.F. cycle or will my A.F. continue to progress " behind the scenes ". Thanks in anticipation.

Finvola profile image
Finvola in reply to dedeottie

I would also like an answer to dedeottie's question.

Many thanks from me too.

purple profile image
purple

MEDICATION FOR AF & OTHER HEART RHYTHM PROBLEMS. This could be a question or a whole article! How to deal with the side effects of our medication. Suggestions of how long to try to tolerate a particular med before trying another. How do doctors decide which one to try first? Any risks of stopping medication or reducing dose? I am sure there are other members out there that could add to this list!

Beancounter profile image
BeancounterVolunteer

Hot Topics recently.

1) Stroke risk, differences for PAF, persistent AF and those post ablation with little or no AF.

2) (Personal) Asymptomatic persistent, does it ALWAYS get worse, or can it just carry on and if so what are the implications to lifestyle and life expectancy?

3) Patients rights when asking to be referred to an EP what can they insist upon with their GP?

4) Postcode lotteries for NOACs and Self Testing, any chance of changes?

Sorry for being greedy with four questions.

Thanks

Ian

meadfoot profile image
meadfoot

I would like to ask what is the value of undergoing an Electrophysiology study. Thank you.

jennydog profile image
jennydog

Do beta blockers such as Bisoprolol cause long term nerve damage in limbs?

Marion62 profile image
Marion62

Asymptomatic permanent AF - only under GP care.

What tests including blood tests should GP be doing and how frequently? eg BP, pulse, blood tests, (which ones) ECG, Echocardiogram.

I cannot find this info anywhere.

Thanks

Mrspat profile image
Mrspat

What drugs and other treatments for AF are currently being tested and what changes can we expect in the next few years? Thinking here particularly about non-invasive treatments and alternatives to drugs such as Amiodarone.

Japaholic profile image
Japaholic

I take dysopyramide.

According to the pharmaceutical company that makes it and the patient information leaflet that comes with the drugs the minimum dose is 300mg per day maximum dose is 800mg per day.

My Cardiologist will only prescribe 200mg per day as he says it may suppress my heart too much? No further explanation given

The literature clearly states "Minimum clinically effective dose is 300mg split into 3 * 100mg during the day. Optimum dosage is 100mg every 6 hours" which is 400mg per day.

I am still having AF episodes on this small dose.

Other than the AF my heart is structurally normal and is functioning well.

Is this the general consensus about this drug or is he mistaken?

in reply to Japaholic

I asked my EP last time if I could reduce my dose from 500mg to 250 a day (one pill). He said he wouldn't as it wouldn't do much. He gave me permission to go to 750 if I felt I needed to.

!!!!!

Koll

OzLynda profile image
OzLynda

Are there guidelines about when to seek help from ER for an AF event?

Mine (about 7 to date, spaced over a couple of years) are rapid AF, very intense and usually accompanied by chest/back pain. So far I've self reverted under 6 or 7 hours, and the times I've gone to the ER and, nice as they are, I've been given the impression that I needn't have gone to them. Now, although scared and upset I've been trying to 'wait it out'.

Note, the severe back pain stops when I revert to normal sinus rhythm. At the hospital, blood tests have shown 'elevated heart markers', and they said that could indicate a mild heart attack or more likely that the heart has sustained a bit of damage from the AF event. A recent echocardiogram shows a severely dilated left atrium.

I'm 70, and live on my own in a country town which has only one cardiology practice. To date no one has mentioned drugs such as flecanide? or told me about ablation, I only know about them by reading forums such as this one.

I really would appreciate some guidance.

a) Are patients with untreated sleep apnea and obesity at an increased risk of stroke and AF ? Therefore is sleep apnea a cause or a co-existing condition with AF and following a successful Ablation if sleep apnea is untreated will AF return ?

b) Will following a successful Ablation and thus maintaining a regular cardiac rhythm decrease the risk of developing dementia?

jossikins profile image
jossikins

I have recently had an AV ablation and a previously implanted pacemaker activated. I have been in normal sinus rhythm ever since, which is wonderful. However, I understand that the fibrillating is still happening but I cannot feel it. Could the fibrillation ever worsen, possibly dangerously, without my even being aware of it?

I had AF lots of failed procedures then tumour found in heart. This was removed and cox maze done at same time. Left me with arrhythmias both bradycardia and tachycardia. Have pacemaker now to keep heart rate at 60 plus rate responsive so it will increase to 125 to allow me to exercise. Take bisoprolol and Flecainide do I need these now ? Thanks

Buffafly profile image
Buffafly

Although I am not feeling symptoms of AF I feel that my heart is not 'running' well and my recording from my Alivecor looks very strange, more like flutter. I complained of tiredness to my doctor who did blood tests but what I really wanted was an ECG. How can I get one done?

Sharon1234567 profile image
Sharon1234567

I have had an ablation in December still on Beta Blockers until I see EP. Is it likely I will be taken off these and also do I still need to take warfarin if no AF symptoms.

Bagrat profile image
Bagrat

I was prescribed Flecainide 100mg BD after two episodes of fast paroxysmal AF. three years ago. Only one episode since ( as a result of a viral infection). I was discharged by the cardiologist and it has never been suggested that I try a lower dose. I have no problems on this dose apart from sudden short episodes of fatigue which pass after a rest. I am 70 years old, female and anti coagulated. Should I just continue?

Kiplingharry profile image
Kiplingharry

Rhythm control drugs such as Amiodarone, dronedarone can have serious side effects. What research is going on to improve rhythm control medication?

pattiannj profile image
pattiannj

I would like to know if Magnesium is any benefit to AF patients & is so what dose is needed/

I would like to know how I can be sure that the fast fibrillation I get is Atrial & not the dangerous Ventricular!

Thanks!

Sandra

Varina8 profile image
Varina8

I would like to know why or which clearly symptomatic arytmias are not registered by pacemaker?

Background: female, 70yrs,PAF 9 years, due to bradycardia pacemaker, changed after 6 years. Yearly pacemaker control shows the small frills that I can also feel and recognize as AF but the life disturbing, very symptomatic arytmias causing hypotonia and weakness and lasting 12 hours are not registered at all. They resolve spontaneously - so I stay home. I have never got any explanation from drs and feel that they think " it is something in my head only". I am not scared or anything but have been thinking if there is something else going on in my heart that with time gets more dangerous than AF. I am on propafenone since oct 2013 and it took all arytmias away for some months, but first came the small frills back and since first december 2014 I have had 3 "big episodes". Can it be severe flutter or what ?

Varina8 profile image
Varina8

I asked about pacemaker readings.

Forgot to say that mine is a dual chamber Medtronic a.s.o. most of the time atrial pacing, but lately about 3% ventricular.

souljacs4 profile image
souljacs4

Why is there so little data on AF in general when it affects so many people.

sorry another thought, as my pacemaker keeps me at 60 and when i exercise it increases to the most 125 then when i stop drop down straight away, does this mean i do not nbenefit from the afterburn of exercise?

BobD profile image
BobDVolunteer

One rather important question is should there be regular testing of people with AF who are on medication to check that said medication is not causing other damage. For example NOACs and liver function? We read of so many people who have been put on mediation and basically slipped out of the system with no follow up. What if any guidelines exist?

Bob

Against the background of NICE Diagnostic Guidelines DG14 on the matter of Self Testing and Self Managing my INR tests - do I have a legal right to defy my GP (who uses the Venous Draw technique for getting my INR) and proceed with Self Testing and Self Management yet still expect my GP to prescribe my Warfarin and Test Strips. I have my own Coaguchek XS device which I have used for 5 years, and access the Algorithms to recalculate any changes in doses as and when required. I have stable INR's.

John

souljacs4 profile image
souljacs4

Does AF always get worse even with medication.

Langara profile image
Langara

I would like to know why G.Ps., cardiologists and E.Ps. so often do not appear to be singing off the same hymn sheet. Is it due to lack of research into the condition or lack of medical education about the condition?

Do multiple DCCV's incur a risk of damage to the heart muscle thereby increasing the risk of Ventricular Fibrillation?

AFAssociation1 profile image
AFAssociation1

Thank you for your questions - we have taken a selection of these to put in our newsletter, which will be out later this year.

If you do have any pressing enquiries, please contact our helpline on 01789 867502 or info@afa.org.uk

gerryatriq profile image
gerryatriq

In reality how many types of AF are there? Or is it like a broken leg, where all breaks are the same, just in a different place.And if so why are there so many different approaches to a cure and why do different Hospitals appear to offer different ways of tackling the issue or not.

Why do we not yet know if AF is genetic or lifestyle, with all of the recent records and technology, surely this would help in finding a cure?.

Lets have many more facts about ablation real success (ie over 10 years), taking into account handpicked patients.

At epidemic proportions surely AF must be receiving a lot of Pharma interest?

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