Feeling unhappy

[Alidol]

After being diagnosed with AF back in February and being in AF for several weeks was prescribed Apixaban 5mg and Bisoprolol 2.5 things settled nicely and l felt very fortunate to return to a normal life just being careful not to stress about things be more conscious about eating habits and sleep . Last night AF has returned don’t understand why feeling rubbish and emotional upset . Just needed to share 🙁

[BobD Volunteer]

Sorry to say this but you have AF so you will get AF. You do not need a reason!

Remember that any and all treatment for AF is only ever about improving quality of life (QOL) and nothing you have been prescribed is to stop AF happening. Bisoprolol is a beta blocker to slow your heart during events and has no anti-arrhythmic affect. Apixaban is an anti-coagulant to reduce your stroke risk as AF vastly increases our chances of stroke.

AF is a long journey I'm afraid and there will be lots of ups and downs along the way but like most of us you will get used to it and learn to accept that life is different now but just as precious. Keep up the life style changes and stay well hydrated at all times.

[Alidol in reply to BobD]

Thanks BobD understand l need to learn to live with it . This site is very comforting and informative .

[doodle68]

Hi Alidol I guess you mean you have Paroxysmal AF (P-AF) which by its very nature can appear when least expected. Feeling rubbish and depressed about having it goes with the condition too. I have P-AF and tell myself I have overcome every episode so far and will do so again .

Medication and lifestyle changes have reduced the severity and frequency of my episodes but I still get some , they are now part of my life and largely ignored when possible.

I hadn't had an episode of which I was aware for a while and yesterday bent to put the dog's lead on to go for a walk and bang, I was in AF. The time was when I would have panicked and flapped about but not anymore, I calmly carried on with my walk not at my usual pace more slowly and doing my breathing exercises and I was fine. The episode only lasts an hour so one of my better ones.

Try not to worry, many of us share your problem and understand so you are not alone.

[Alidol in reply to doodle68]

Hi doodle68

Thank you for your comforting words . I will try and carry on as normal 😀

[Alidol in reply to Alidol]

Just out of interest how long has your longest episode of AF been whilst on the drugs ?

[doodle68 in reply to Alidol]

Hi Alidol, my longest episode ever was while I have been on medication and it was 15 hours.

[Tudee in reply to doodle68]

Hi doodle, when you say when walking the dog, you just went into AF, was it at an acceptable rate.?

[doodle68 in reply to Tudee]

Hi Trudee at one time I could hardly stand when having an episode of P-AF , I guess that was due to lack of blood circulating in the body.

Now with medication (beta blockers) and an absence of fear I don't feel so bad in AF and am still able to walk my dog down through the fields where there are no humans expecting me to speak to them.

I normally walk quite fast but when in AF I walk at a speed which does not add to my breathlessness.

[Tudee in reply to doodle68]

I am in AF permanently now, I started with PAF, then of course to my present state, its quite normal for me now, I'm on Apixaban, Bisoprolol 1.25mg and Flecainide. B/p 125/65, H.R 72 but I think the Flecainide is working as a pro arrhymic now, so awaiting Cardiologist appointment, aren't we all !!!!

Best of luck to you.

[KathFrances in reply to doodle68]

Thanks for posting - I’ve also noticed that bending down can trigger my PAF. Cleaning the floor has to be done whilst sitting down on it!

[Hidden in reply to KathFrances]

Tying up or fastening shoes too.

[Hidden]

Would it be worth re-exploring rhythm control medications? Did you discuss ablation with the cardiologist?

[Alidol in reply to Hidden]

Annoying thing only just seen my GP and as things were going so well he did not want to see me until January . How successful are ablations? l presume people who have a successful one don’t need this site anymore so don’t hear about the positive things .

[BobD Volunteer in reply to Alidol]

To a great extent. I had three up till 2008 and no AF since but some of us do still stay to help others as we remember how bad we felt..

[Alidol in reply to BobD]

Hope you are still in good health . Thank you for sharing your positivity.

[KMRobbo in reply to Alidol]

My EP advised that 65 to 70 % success rate for PVI a fib ablation. I had mine 29 Jan 2018. It appears to have been a success as I do not appear to have had an AF attack since.( fingers crossed as I write this!) Prior to my ablation I was rhythm controlled by flecainide. This was from mid July 2017. This rhythm control was necessary as in July I had an attack of AF which lasted approx 8 days and i was in high hr (up to 190 bpm resting). There were parts of that time I was not in AF. I was cardiovertd eventually by flecainide Infusion In the CCU of my local hospital I was largely asymptomic in AF. However after 8 days of the high rate I was shattered.

Unfortunately 9 days post A Fib ablation I developed reentrant atrial flutter. My HR was 137- 140 ish for 3 weeks it was rate controlled at this by diltiazem 200mg. I was very symptomatic in flutter , any movement I was breathless, even walking to the kitchen to get a brew. The flutter was only stopped by an RF ablation on the right atria. This ablation was advised by my EP to be a 95% success rate. The flutter stopped during the ablation and has not returned. After 3 weeks of flutter I was absolutely knackered, and as I had spent the 3 weeks mostly lying down I was actually in quite poor physical shape and it took a couple of months to get my fitness back.

[Hidden]

I think most of us go through a massive low (or a whole series of lows) coming to terms either with having a very unpredictable heart condition or with the effects of medication for it but it can be a tunnel with light at the end. We gain a lot of knowledge and - in time - experience. One can feel fettered and weighed down, but if bit by bit you have little triumphs and get your medication adjusted to what suits, you can find you have begun to see AF as a much smaller gremlin than it first appeared to be.

[Alidol in reply to Hidden]

Thank for your positive feedback and comforting to know lm not alone

[TamlaMotown]

Hi Alidol. Like yourself I am new to AF. I was diagnosed in April. It's really difficult to come to terms with & learn to live with it. I quite envy the lovely helpful people on the forum in that they are much further along this bumpy road & it's so comforting to hear from them that there is life & hope with this dreadful condition. I hope the day comes soon when I don't go into instant panic when AF visits like doodle68 has just described. It's nice to know we are in good company & not alone. 👍

[Alidol in reply to TamlaMotown]

Yes it’s learning not to panic when we go into AF

[TamlaMotown in reply to Alidol]

So much easier said than done!! Still trying to master it 😓

[Alidol in reply to TamlaMotown]

Me too but it’s early days for us and it does seem to be a fairly common condition . Stay positive 😀

[Rubymurray25 in reply to Alidol]

So very true, anxiety and panic has always made mine worse without any doubt, slowly but surely I am getting my breathing under control when I feel something happening and feel so much more better for it!

[Finvola]

So much of coping with AF comes from the brain - I can actually feel my anxiety kick in when my heart plays up. I had what I assume now were episodes of AF for about 6 years before diagnosis - I treated these funny turns as a bit of a nuisance.

Once I found out that I had a heart condition, I went into full panic mode each time I had an episode. The AF was no worse nor no more debilitating but I made it so by worry, fussing, trying to think what had caused it etc etc. I’ve now been taking Flecainide for over 4 years and have had no AF in that time.

My way of coping to some degree is my thought ‘my AF will return but when it does, I’ll cope’. That seems to have decreased the anxiety somewhat when I get ectopics and runs of tachycardia.

I hope some of this is helpful - as is the great advice from previous posters. You will find your way through this - chin up.

[Hidden in reply to Finvola]

I too have PAF and finally got a prescription for flecainide which I just used as a PIP if/when I went into AF - the episodes never lasted very long (a few hours) but when I was having short periods of other arythmias- like some slow irregular I was advised to take the flecainide on a regular basis- 3 a day. An hour or so after taking the first one when my heart was behaving fine- it went into all sorts of weird behaviour so I shall not be taking it again unless I am in AF as I do not want to bring on heart problems by taking it when my heart is working well. I wonder if anyone else has had this type of problem as so many people seem to take flecainide regularly without problems. Of course, we are all different and I don't take well to drugs at all!

[Finvola in reply to Hidden]

That’s a misery for you - perhaps you should refer this to your cardiologist? I was prescribed Flecainide 100mg twice daily from the start and often wished I had been offered a PIP instead. Although my PAF episodes came only every few days, apparently a Holter showed constant little runs of several arrhythmias, so my EP felt constant rhythm control was necessary, rather like your physician.

Your problem may only be the need for your heart to settle on the drug. Best wishes.

[Hidden in reply to Finvola]

It wasn't my physician who prescribed the flecainide- it was the nice EP we saw privately. The NHS cardiologist was pretty useless and signed me off without telling me he was! He insisted that bisoprolol was fine for me when the lowest dosage of 1.25 mg brought my heart rate down dangerously low and sometimes my heart irregularities were not fast! I saw my "consultant" for about 5 minutes! We are all different and GPs can't be expert at everything (even if you can manage to get an appointment with them). I was sad when the nice EP suggested taking the 50mg flecainide so often but felt a lot worse after what one tablet did to me when my heart had been fine. I get AF episodes about once a week but they never last more than a few hours. I use a Kardia to check- do you have one? We should compare notes- odd that they started you on twice the dose I have. I am slim and previously healthy and fit so it has all been quite a shock for me though a year since my diagnosis and no proper treatment in place yet. I think I may have another problem which s causing the exhaustion. Thanks for replying. Good luck!

[Finvola in reply to Hidden]

My cardiologist loves Bisoprolol too and it was an EP who prescribed Flecainide over four years ago. I recently was changed from Bisoprolol to Nebivolol after complaining of breathlessness and aftigue for four years. I now feel much more like my old self.

Yes, I have a Kardia and wouldn’t be without it - EP, cardiologist and GP think it is a great thingto have and accept my printouts happily.

At the time I started Flecainide, there was some discussion amongst the consultants about 15 beats on my Holter possibly being VT. Eventually, they decided it was SVT with aberrant conduction, so I think the EP was thinking far ahead. Keep well!

[Hidden in reply to Finvola]

I am very impressed- when I offered to send my Kardia readings on to my "consultant" he ignored me and later I was told that they had written me off the AF services! Given the useless lack of treatment I don't think I'll bother to be referred to them again! It has all been very disappointing as we have been campaigning for the NHS for years! I thought they were supposed to take special care of over 70s and I'm 74 and previously been very fit and healthy!

[doodle68]

Like Finvola I have clearly had undiagnosed P-AF for many years (17+ I would guess ) without bothering because I only had a brief 'odd turn' every few years and so they were quickly forgotten.

It wasn't until they became a regular occurrence lasting many hours every couple of weeks with horrible symptoms that I started to panic and go into anxiety mode pushing my blood pressure to dizzy heights and making the episodes of P-AF much worse.

I now view P-AF as my body giving me a severe warning, change your habits or shorten your life and I have done just that

[TamlaMotown in reply to doodle68]

I know now that I have had undiagnosed AF for approximately 5yrs but the episodes lasted no longer than 30mins so it was never caught. Monitors didn't record it either because as we all know AF likes to stay hidden! I was told all this time that it was just anxiety. Having a diagnosis & knowing you are not an anxious wreck has helped somewhat. It just feels like an uphill climb constantly yet.

[Morzine]

Fully understand I’m the same I started this in May, ive been normal for a couple on months....last night it started.....feel just the same as you feel like the rug has been pulled .

[Hidden]

Like you recently diagnosed in 2017 but had it since at least 2014 I think and wrote it off as stress ! At least now you are diagnosed you are protected which certainly won't have been the case ! I try to let the episodes wash over me now which helps.

Best wishes

[Overweight11]

I'm puzzled. I've had various heart problems including hear rythm for ten years or so, and have recently been diagnosed with AF. I am now fitted with an implanted pacemaker/defib and will this week be prescribed a NOAC.

The thing is - I've never ever experienced any of the symptoms which many here unfortunately experience. Have I just been lucky (so far)?

[Gillybean123]

Hi there, it is so hard when you start having AF I think most times we know why it has started.i find though it starts at the most unusual times. I do think in my opinion that it’s not what you have done today or last night when it starts but perhaps something you did the weekend wrong. Something you ate. Bit too much work, exercise or got really upset over something. I think we think why have I got this. I have just heard so,e bad news about a friend of mine who may have the dreaded C. I came home and thought well I’ve got AF so stop feeling sorry for myself. Do you know what I mean. Lost my lovely hubby to the dreaded C but I’m still here with awful AF. You will be fine every turn you get through you will cope with it. Love Jilly bean.

[Sportfix]

Ask to see an electrophysiologist. He will assess you & give you options. Better than just putting up with AF and being depressed. I am hopefully cured now after

a couple of ablations. Well worth it.

[F-M-C-MM]

Sportfix is right, ask to see an electrophysiologist, particularly if the medication isin't working. Flecanide works for some people as testified above, however for others it is proarrythmic. I believe it is contraindicated for asthmatics. Ablation is suitable for some people and the success rate is good., and certainly beats the anxiety caused by experimenting with different drugs to see which will work. For me ablation is worth trying as there is a good chance you could lower considerably the amount of medication currently prescribed. I am drug free for now, but realise it's only another treatment and that AFib may recur. I am more relaxed though and grateful for the year's respite. So if ablation is recommended its worth considering.

[Hidden in reply to F-M-C-MM]

I had expected that someone might have suggested something other than pills which I don't usually get on with but no-one did - impressed that your op worked- Though flecainide worked for me as a PIP it brought on arrhythmias when I took a pill when my heart was fine and it had been suggested that I take it 3 times a day as a preventative! Not doing that now! As our posts have shown we are all different. I only got to see an EP when I paid for one privately and thus got the flecainide but he hasn't got back to me about the nasty result I got when attempting to take the stuff regularly at his suggestion!

[Hidden in reply to F-M-C-MM]

Can you tell me what ablation involves please? I was diagnosed a year ago with PAF and have had problems with the drugs so just taking 50mg flecainide as a PIP and nothing else at the moment. I can't write more as the system wont let me go beyond this line!

[sue13hils]

Hi I had my ablation 2009 then it came back 2017. Had second Ablation Aug 2017. I feel a lot better so first one lasted eight years hopefully this will be longer good luck to you

[Zabadak]

I think it’s important to get a good long chat with the cardiologist about the medication. I had a very bad patch and my GP kept tweaking the meds. I got worse and worse. Eventually she admitted defeat. But it took a private appointment £140 well spent, just to talk at length. Taken off bisopralol and onto verapamil, and I’ve not looked back. I think the issue of rate control versus rhythm control is not well understood by GP’s. Plus every AF is different and responds to different things. No simple answer but for me a simple change of meds has been crucial, as I nearly had to give up work with the frequent episodes of palpitations I was having. Docs thought it was work stress but two weeks off I was totally chilled but still having palpitations. Only then did they take me seriously!

[afdan]

My AF usually comes at night or early morning due to sleep apnea. You may want to have that checked if you haven’t done so already