I usually sit on the sidelines here as I'm fairly new to AF and I am just learning about it all. I started with full blown AF last year (paroxysmal ) and after a terrible summer being medicated with sotalol giving me horrible side effects I eventually persuaded my cardiologist to give me flecainide pill in the pocket.
I've used this a few times quite succesfully and I've been taking it if the ectopics feel like they are revving up and it's been great.
But. ..(.there's always a but isn't there! ) last Thursday I went into an extremely violent AF where my heart rate was so fast and irregular that I really couldn't cope even having taken the flecainide so I phoned an ambulance. I know it sounds dramatic but I truly thought I was dying 😣
Of course soon after the paramedics arrived it reverted to NSR and normality resumed! They were really nice about it and the following day I saw my GP and we've decided that I'm to start flecainide 50mg twice daily. I've had 3 ectopics since and each one has been horrible. Really hard beats with a dizzy faint feeling.
I suppose my reason for posting this is that I'm frightened! I'm frightened about fainting anywhere. I'm frightened of the lack of control. I'm terrified of getting that really violent AF again. I'm in a constant state of alert which I know is counter productive but I can't seem to shake it off. Has anyone else been like this? I've got a re - referral to the electrophysiologist again although I suspect he'll say I'm not quite ready for an ablation again but I feel like a time bomb!
Some wise words from some wise folk would be good 😢
Thank you for anyone who reads this. X
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Scared is normal, can I start there? especially when you are new to AF, and especially when you have paroxysmal, it is a very very scary thing to happen to you.
What you need to try and remember is that however bad it feels like during an attack, it's still not likely to be fatal in any way. No I know that's really hard to understand, and that you feel like your heart is going to fail at any moment, but it's not. And that is also why we (and I do mean we) get so frustrated with the medics who can often treat us without any sense of urgency, as in "it's only AF" when you want to scream at them, well bloody well change places with me and see how you feel.
A very famous US doctor says AF is seldom fatal, it just feels that way at the time.
Frightened is usual too, of course you are frightened goods news is you are seeing your EP again, and good news that you are in front of an EP, Well done for that.
Now you need knowledge, because knowledge will assist you to come to terms with AF, so read the AFA website cover to cover, ask as many questions here as you can think of, become your OWN expert in AF and YOU, because that way you will understand what is happening better and be more able to cope with it.
You are among friends, you are among fellow sufferers, we understand...
What a fast reply! I'm very grateful. I really thought that I'd got it sussed after having had a few episodes but honestly, last Thursday was so so bad it's knocked me and my confidence badly. Thanks for the wise words. I've really got to try and calm down. I'm on high alert for side effects of flecainide too. It's not a good way to be and very unnatural for me. Fingers crossed I calm down! Thanks again Ian Beancounter ☺
Ian has said it all really. He and Bob really saved my sanity when I first came on the forum, but I just wanted to let you know that I know and understand how you feel and to lend my support. No matter how sensible I may sound when I talk and write about It, in reality,whenever I have A.F. It makes me want to cry! There are plenty of like minded people on here. It sounds like you are likely to be in safe hands if you are seeing an E.P. and that alone will make you feel better. Flecanide worked really well for me albeit at a higher dose than yours. I was really scared to take it but it became my friend! Good luck.x
Hi I have PAF (which I believe means intermittent) AF, I have had three very bad attacks where heart rate was over 180 each time so scared I called ambulance twice to A&E third time hubby took me, I have always gone back to sinus soon as got there, but all were kind, I am always scared but not as much the last time, I only have pill in pocket, I think I should be classed as permanent AF now as everyday I have some episodes of ectopic beats, I took antidepressants fir over year for anxiety but stopped now, I deal with it much better, so assure you what you feel is normal, hope helps, keep well x
Hi Toto, the first phase of AF and drug therapy has been a testing time for us all.
The good news is that you seem to tolerate Flecainide and that if you don't have any other heart/health issues you would be unlucky to have any side effects (so my cardiologist has told me at least three times).
I started on Flecainide pill in the pocket, graduated to a regular 50mgs twice daily (which didn't stop it) and went onto 100mgs twice daily and have been fine for 15 months.
Do look at lifestyle changes and Magnesium and CoQ10 supplements as well - oodles of advice here on all those.
I went to see an EP early on as well but decided to postpone an ablation as the drug and supplement therapy plus lifestyle changes had stopped the AF.
Can I suggest that you keep a diary of your AF incidents and medication so that you have something to show to the EP. Tell him that coping has become a problem and that you have lost confidence.
Looking back I think that I was fortunate to be fibrillating when I first saw my EP. The stress of finding the place on time nearly finished me off! At least they took me seriously which they may not have done had I arrived looking perfectly healthy.
FYI-some AF meds can CAUSE increased panic and anxiety as side-effects. Yes, keeping a log of AF events really helps document what is going on. You probably have an app for that, but being a little less technical, my husband printed out hard-copy blank calendars to log AF. My psychotherapist helped me define "my new normal" after the AF diagnosis. That includes wearing an emergency ID disk, always carrying extra meds and tiny finger HR monitor, having a Plan B if I have an episode while away from home (such as enough taxi money if I can't drive), etc. My MD also approved a low-dose tranquilizer if needed during an episode. It also helps to have 24-7 phone access to medical team if I have a question. The responder can access my computer records and see history, meds, treatment plan, etc.
Oh dear I do feel for you. You are a mirror image of me. I can identify fully with everything you say. The violent episodes are terrifying I know only too well and until you have them at this level it is hard to grasp their severity.
Like you I have flecainide pip which is good but it does not take the terror away. I can't express just how much empathy I have with you and it is so hard to get on with life when you feel so poorly one way or another with this condition that your life seems an endless flow of feeling ill with it one way or another and the anxiety of a whacking attack on the horizon at any point.
So I hope you can feel my empathy. On a practical note I am seeing a psychologist specialising in health conditions which are acute and chronic. I am new to it but it is wonderful to have someone to speak with who understands so well. Do you have a local af support group at your hospital we have a wonderful one in my home city, I have made so many understanding and supportive friends we go out for lunch and visit each other regularly. It us so good to have supportive and understanding af pals. This forum is amazing too.
You know I could have written your post myself and am so sorry you have such awful episodes. I would be asking to see the EP as a priority don't drag yourself along without the best medical support. Thinking of you. Take care.
I also feel for you Toto and this forum has beem great for me to hear from other people who have had similar symptoms and feelings to me..and you now just have Faith that all will be well. The good news is that atrial arryhtmias are not life threatening and you are only at the beginning of your journey of treatment so there are many options for you and EPs are very specialised medics so you are in great hands. Stay positive and use your supports like this forum and your loved ones and friends for added strength
I think most of us on here can empathize with you I am quite new to this as well I almost drove myself and my GP insane no sooner did I get one thing under control it would change and when they said AF won't kill you I thought yea right you have never felt it, I had never had an attack when I was out of my home only happened when resting so became comfortable about going out, think again had the worst attack ever 6weeks ago when visiting my daughter had to be cardio verted ,so things have changed again but now I don't get myself in a tiz and try to accept it won kill me , hope you feel better soon Mazza
Hello AF friends, here I am in Malaysia, beautiful weather, hit and sunny, I had booked this 6 weeks ago, with my cardiologist permission, but admit was a bit wary, I am on PAF, and just before leaving last week, the doc. Phoned to say stop the Digocin, it was doing nothing for me, so must admit I am a bit wary, my heart rate is fluttering from 100 down to 65, which leaves me washed out, but just taking it easy. I am booked for a cardioversion when I get home, have to have medication, 3 times a day for first week, 2 a day for the second week, then 1 every day till I get the procedure,must admit, not looking forwRd to the medication,lots of side effects, but has to be done!. I was dreading the plane flight, 13 hours, but it was a night flight, and slept most of time. So all in all I am glad I went, it's lovely to have a summer at last. Take care. !
Hi Toto, as you can see from all these posts, your situation is how we all started!
I had a first nasty attack on top of Ingleborough and thought that my time was up! Another attack in York a couple of months later and then another during a bike ride forced me to go to the GP where I was diagnosed with PAF.
I started on bisoprolol after those three or four very vigorous attacks in order to stop the high rates when I went into AF and eventually flecainide at 100mg twice a day which kept me in good shape for about a year.
Also put on amiodarone and eventually sotalol. I had to stop the flecainide following a scan and eventually had a cryoablation.
I had some really bad advice over a number of years from some so called professionals, especially from a consultant in France whilst skiing, who said that he would never prescribe flecainide as it was too dangerous.
Also scared myself silly, reading stuff on the internet.
Eventually had an appointment with the all-important EP who knows what he is talking about with respect to this condition and not some general cardiologist with a half-arsed knowledge base.
Bottom line is, I found bisoprolol too difficult but sotolol fine. I don't know why I was given amiodarone twice IV as one-offs during a prolonged AF period(5-9 days), but this was prescribed by registrars in A&E. After getting over the fear factor of taking it, flecainide was great for a year.
My AF attacks got more frequent and prolonged(up to 11 days). After 5 years of umming and aahing, I went for the ablation, despite my fears. Had the procedure at the Oxford Heart Centre, a PVI cryoablation.
Result? Feel much better now, off all meds except warfarin, have had two short-lived AF attacks and some ectopic runs but not a lot else in 7 months. Still get the odd ectopic but am getting used to these.
I have no idea why I put off the ablation for so long! Just too scared I suppose. Given my time again, I would go for the ablation at the earliest convenience!! It has transformed my life and given me hope!
Hi Toto, as everyone else has said, sorry you've had to join the crowd, but we've been there. Just a few things to add from me:
1) Paroxysmal AF is frightening at first, but as you get to know what happens, how long the episodes last and your confidence increases, you'll find the episodes become more of a pain in the neck than frightening.
2) Make sure you drink plenty of water as dehydration can be a trigger.
3) Never feel bad about calling an ambulance. A paramedic recently told me that they'd rather come to an AF call as a genuine medical condition than the many drink-related calls that they get. Again, as your knowledge grows, you'll become more confident dealing with episodes at home.
4) Try and get to the AF Association's Patients' Day in October - it's a fantastic source of information with a panel of cardiac specialists (including EPs) on-site.
I don't know if this will help, but take it for whatever it seems worth to you.
I have suffered from AF for 23 years. I have had three abaltion procedures and although not a perfect solution, together with 50mg Flecainide twice a day and the security of the pills in my pocket, to be taken in case of an AF attack, I seem to be stable and have been for a couple of years. When I last saw my consultant, he told me that the 100mg Flecainide, with a 25mg Motoprolol, would not help the frequent ectopic episodes I experience. These are short lived, but do make me feel unsteady and slightly breathless. I just slow down for 15 minutes, sitting down and reading and the symptoms fade away. I have an appointment next month with a new consultant and will discuss with him, but I guess he will recommend taking no action.
I have experienced two similar violent attacks, during which my pulse went up to 220 and I though I was going to die. Also, similar to your experience, by the time I arrived in hospital by ambulance with a siren and blue light, the violent symptoms had abated. This was diagnosed as Atrial Tachycardia, although the A & E consultant who saw me the first time this happened, thought this was Ventricular Tachycardia, which is altogether a more serious story.
I'm truly overwhelmed by all of your replies and stories. Thank you to everyone for your time. It's so hard to believe that it's not life threatening! It felt like my heart was going to explode. I just don't know how to cope with the thought that it will happen again because that's what happens isn't it. I feel like an ill person and I've never been like that before. However life has to go on i guess but I'm going to take my time and not rush around in denial.
AF is a condition. It's not an illness. It is a fault with the heart's electrics and normal rhythm goes up the creek. You can have AF with a normally functioning heart or with a heart that isn't quite spot on. Either way, the more it does it, the better you get to know its quirks and the more experienced you become the less you worry. It's hard at first and we have all been there. There are many ways to improve the silly things that can go on.
Hi Toto don't be hard on yourself....I found AF to be so debilitating and very frightening too...the people on here are wonderful and if I hadn't had there support and kind words at times I think I would have totally fallen apart....I still read many posts and say well that's how I feel and that's the same as me....it helps just to know someone else out there has the same feelings and symptoms as me and then the reassurance seems real too......keep a diary as suggested and read all you can esp. on here....and research is wonderful if you can read all the info on the site very helpful and will reassure you a lot as well....well wishes your way....regards Jo
HI, never worry about calling an ambulance, I was told by my cardiologist that it is the right thing to do. I have had AF for five years now and have called twice, the first time being when I had my first incident and spent a night in the cardiac CCU.
Initially I was put on aspirin, amlodopine and Atorvastatin.
I had several small incidents and ectopics
Following another hospital emergency visit I am now on Flecainide 100mg twice a day, my doctor tried to reduce it to 50mg twice a day but it didn't hold it. I also take Dabigatran twice a day, Amlodopine, Atorvastatin and Lanzoprasole (to reduce the side effect of Dabigatran).
I am now mostly stable but do have the odd incident where I take extra Flecainide.
Like you I was scared initially but have got used to it now and tend to ignore the odd ectopics. I have now been put under the care of my doctor and not the hospital and am now confident with how to control with Flecainide and when I need to take more action.
I do get the light headed feeling with the ectopics, but these are less frequent with the higher dose of Flecainide.
I hope this helps you, perhaps a visit back to your doctors to increase the Flecainide would help.
I was very frightened the first time I went into hospital but was told in the hospital that people with AF live good long lives with the medication and the nurse know many AF patients who are well into their 80s/90s and have had it for many years.
Once again, thank you to everyone who sent some wisdom. My heart definitely seems much calmer now I've had a few days of constant flecainide and this has reduced my anxiety substantially. I was really shocked after the massive tachycardic response last week and honestly, the thought of getting this again fills me with dread. But as the days pass it gets better. I suppose the fact that I didn't get any pain whilst at such a high heart rate is somewhat gratifying!
I'm thinking of buying some sort of magnesium product....can't hurt i don't think.
One thing I can't understand is how there are people who are in AF all the time. Does this mean that they don't get tachycardia?
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just have Faith that all will be well. The good news is that atrial arryhtmias are not life threatening and you are only at the beginning of your journey of treatment so there are many options for you and EPs are very specialised medics so you are in great hands. Stay positive and use your supports like this forum and your loved ones and friends for added strength
Nervous and scared about this whole AF thing
To call ambulance -- or not?
PAF - Ablate or Medicate?
Flecainide made things worse
