Worried

[Oldhamsarah]

My hubby has had about ten attacks of af in last two years, five of them in last six months, he's waiting for cardioversion (on warfarin) when his inr ok. His rate hasn't been below 120 in nearly four weeks and he's so Poorly with it now, has to sleep downstairs as even getting undressed gets him out of breath, feels like he's going to pass out all the time with the dizziness, he's reluctant to go back to hospital as all they're trying is medication and it's doing nothing, he's on max dose bisophorol and flecanide, we are worried about how long your heart can cope with this?

[rosyG]

Sorry to hear this- you must be very worried.

If it were me I would go back and demand some help now!! His INR has to be in range properly of course- is this why you are waiting? Although 120bpm is high, a lot of AF gives much higher rates so try not to worry do go and see if they can bring the rate down with different meds while you are waiting

[Oldhamsarah in reply to rosyG]

Thanks rosy his inr is in range now just has to stay that way for four weeks for cardioversion and then ablation after that, just really worried about long term effects on his heart, he's only 45 and his body just seems to be giving up, doctors aren't great nobody seems to communicate with anybody, if he's no better tomorrow, I'll be taking him back to the hospital x

[Basia12 in reply to Oldhamsarah]

Is his max dose of bisoprolol 10mg? When they upped mine from 5 to 10 ,I felt horrendous, dizzy ,nausea so short of breath I couldn't walk up the stairs the gp advised that I take it 5 mg twice a day which felt better but in the end we reduced it to7.5 which I tolerate. I would discuss with gp . As theAf is fast he will feel exhausted and the bisoprolol can add to this .a GP told me that it takes1mth for your body to get used to new drugs or increased doses before they can start working effectively in some cases .this is what I found but also had to get used to a completely differently way of feeling.by the way i am female and 46 also waiting for ablation x my EP was not worried about me waiting 3-4 mhs with a rate of 120 approx when in AF .I am not on anti arrithmia meds.

[Oldhamsarah in reply to Basia12]

Yes, he's on 10mg, didn't occur to me that it might be the meds, makes sense now...they don't seem to be working anyway!

[lingooz in reply to Oldhamsarah]

I could.not tolerate even 2.5 felt like your hubby so came of and been ok since good luck

[CDreamer in reply to Oldhamsarah]

I don't believe that doctors give up but I do believe that they get a little complacent and do not realize the effect AF has on some people's lives. Many people can work and exercise with fast AF and others are completely incapacitated. It is not immediately life threatening although the symptoms can be debilitating.

I learned you have to bang desks and make a fuss AND to become informed and take charge of your condition, not allow the condition to take charge of you. If the INR is not consistently in range, ask for a NOAC.

I am sure you already know this, a cardioversion is not likely to last long, it will however, show that the ablation is likely to be effective.

Is your husband seeing a an EP (elctrophysiologist)? You just said 'the hospital'.

There may be long term effects on the heart for someone in persistent AF over long periods of time, usually an enlarged and flabby atria, but that in itself is not life threatening. Many endurance athletes develop flabby atrias (and AF) and continue.

AF is very scary to experience and to witness but you do get used to it. If your husband is on the max dose of Bisoprolol he will be breathless going up stairs, I couldn't tolerate Biso at all, you can ask to change to another beta blocker?

Read and learn as much as you can about AF and then return to your EP and ask searching, direct questions.

I really would encourage him to go back to the GP and ask for another referral after doing a lot of homework if you are unhappy with current treatment. Start at the AFA website, loads of really good stuff and a directory of specialists. If you want to talk to someone, there is an excellent team at the end of a phone to help.

Very best wishes CD

[Oldhamsarah in reply to CDreamer]

Thanks, that's very helpful, he's only been under the care of the local hospital who don't specialise in cardiology. He's waiting for appointment at a specialised hospital but not with an EP, I'd never heard of an EP until looking on here last night, seems that's the way forward and also possibly changing beta blockers. Thanks again

[RichMert]

This sounds odd to me. If I had a bout of AF that lasted more than 2 hours, I called the alternative number to 999 for advice and they always insisted on an ECG being carried out by an Ambulance crew. Once they confirmed AF they always rushed me down to Treliske A&E where you automatically jump the queue. I am 50 and on one occasion they carried out a Cardioversion after the drug alternative failed to work. They stabilised me in the end with Amiodarone, I would suggest that if this is offered that you ask for an alternative until they make a long term decision. I was told that pulse rates of up to 100 were considered normal and I guess 120 is not alarming to somebody who is not experiencing the anxiety and incapacity that goes with it for the patient. You need to keep pushing.

[Oldhamsarah in reply to RichMert]

He's had five hospital admissions since September all via ambulance, rescus etc, at one point his rate was 270 for five days (he was on coronary care at that point!). Had all the drugs under the sun including Amiodarone but nothing seems to work, pinning our hopes on the ablation now as all else has failed. Am going to speak to his GP today as think he needs readmitting to hospital to be kept an eye on, thanks for your reply

[RichMert in reply to Oldhamsarah]

Well I did not tell you everything but prior to my second ablation, mine was hitting 200 at times and regular 140 with a resting level of 105. I spent 2.5 weeks in hospital but they were able to stabilise it with Amiodarone although it caused both arms to get infected and swollen due to the way it was administered. Bristol were able to fit me in for a second ablation 3 weeks later. To be honest and this may sound unfair to the GP's but PAF is really difficult for them to detect. It took a 200 bpm event in the Doctors surgery and a Paramedic request by the doctor after 2 years before the finally realised what I was going through. I was concerned that they was happy to leave me on 105bpm prior to the Ablation but I know for a fact that they would not have left me on 200, they were getting ready to jump start me but fortunately the Amiodarone worked. I hope all goes well and yes I think he should be readmitted. They released me 3 times during that 2.5 week stay and each time was readmitted within 24 hours. I know that they like to get the Warfarin level right before cardioversion and a delay of 5-7 hours after a meal so if it goes back to normal in that time, they do not carry out the Cardioversion.

[Hidden]

My pulse goes up to 170 and I've heard of higher, but I understand your worry. If you're really concerned I think going back to the doctor and really driving home how this is affecting him is in order. If they can't get him in the INR range they want quickly they should be considering a NOAC... Best of luck!

Lis

[Oldhamsarah in reply to Hidden]

Thank you, not sure what NOAC is, but I'll google it!

[Hidden in reply to Oldhamsarah]

Just Novel anticoagulant something like apixaban or rivaroxaban

[jeanjeannie50]

Sorry to hear your husband isn't feeling too good. I know exactly how he feels as in the past I've had my heart racing over 120bpm for months pending a cardioversion. I've had AF for many years now and am starting to understand how to control it a little. I understand his dreadful tiredness well, but for me if I rested every day and did little, this would only prolong my situation.

The trick is to take yourself out, gingerly of course as the tiredness is overwhelming and just do what you can. I would catch the bus to a nearby town and go into just one shop that really interested me and then come home. Is it possible for you to drive him to a scenic spot to sit for a while and watch the world go by, or a sporting event he'd like to go to where he could sit and watch and lose himself in the match. The power of the mind is amazing. Some men on here have reported that they have literally got on their bikes and cycled their heart back to normal rate (not that I'm suggesting that).

Re-reading your post and how his AF is affecting him, my first thought was to delete what I'd written, but then I thought no.

If he is still feeling so poorly that he has to sleep downstairs I think you should talk to your GP today as worry can make AF worse.

Wishing him well.

Jean

[Oldhamsarah in reply to jeanjeannie50]

Thanks so much Jean, it sounds like you've been through it too. The problem we have also is he's a builder so has had to give up work...good news is we have date for cardioversion in three weeks time hopefully that may give him some reprieve whilst waiting for ablation x

[Jenbo6]

Several people have suggested moving from warfarin to an NOAC but my EP consultant wants me to move from my NOAC to warfarin and be in range for at least three weeks before he will do an ablation. I presumed it was the bleed risk (forgot to ask as so despondent) so that is probably not the solution to his warfarin problem. I'm really sorry you are going through all of this - none of us need additional stress but I do agree with others who have suggested a change of EP or at least a second opinion. I paid for a private EP consultation (£300 including an ECG at Bupa -EP chosen from the list on this site and reviewing their profiles on the Bupa site). It was well worth every penny and reassured me on many of the issues that worried me.

[PeterWh]

Sorry that you are having so many issues and problems. My thought is to get checked out again ASAP (call 999 when having the next incident or worse spell). To me (and I am not medical) the actual heart rate is not the real issue but the debilitating affects and the restrictions. My GP was much more worried about my pulse being too high than my EP was. Apparently many BP monitors (especially wrist ones) and finger pulse Oximeters do not accurately record the pulse rate when you are in AF.

My doctor told me to but a Finger Pulse Oximeter and, over the last week since I bought it, most of the time SpO2 has been below 95% (hitting as low as 89%) and did hit 99% once and 98% a few times. I will find out more next week when I see Dr again but I suspect that this helps explain some of my lethargy and breathlessness though. The pulse aspect is of no use if you are in persistent AF as it does not record them properly (I have a cuff monitor BP machine approved by NICE for AF sufferers which does).

Good luck.

[Oldhamsarah]

Thanks all for your comments, not been able to reply to all as am at work, have spoken to GP who says he needs to go to A & E straightaway so will see what happens

[bebe7637]

Hi. I was only on 2.5 mill of Bisopropol and frankly it made me feel ill. When I saw a new cardiologist ( privately , as I WASNT getting any sense from anyone ) he immediately stopped the Bisoprolol and put me on Digoxin. After a few days the difference was amazing. 10 m is a very high dose. Worth checking out.

Good luck , hope you soon feel better.

[Oldhamsarah in reply to bebe7637]

Thank you it's worth investigating definitely 👍

[Dave1961]

I am sure we can all sympathize in relation to AF and how debilitating it can be. It's just awful - you feel on tenter hooks constantly.

This is little out there but have you tried magnesium supplements?

I have spent months feeling as though I was on the verge of an AF session constantly - and when an AF starts for me it used to be that calling the ambulance would be a 99% certainty.

3 years ago when my AF started I was in hospital the first year 6 times and times the next year. I then started on antidepressants which helped my mood but made my heart feel like it was about to AF constantly.

After having had magnesium drips often when I landed in hospital I finally did some research and found that magnesium is one of the key nutrients that keep your out in rhythm.

I also use amiodarone which leeches magnesium (the very thing needed to keep your heart IN sync) from the body. Add t this alcoholism up until 2 years ago ( which also strips magnesium) an no wonder my heart was AF'ing!

So long story short. I have been supplementing with magnesium for about 6 weeks and feel SO much better. Have not felt even close to having an AF which is remarkable for me.

I know this is kind of left field but I hope you will at least think about magnesium...?