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[toohardbasket]

Hi folks, very pleased to have found this website as I've only been accessing the ones in the US. I was diagnosed with AF in November but got virtually no information from the cardiologist or the GP. Put on Apixaban and Bisoprolol (5mg) and have felt rubbish since then which I assume is the latter now I've looked at posts on this site. I'm tired all the time and a bit depressed if I'm honest. I've had problems with anxiety accompanied by an irregular heart rate since my 30's (now 66) but it was always put down to stress and monitors haven't picked up on AF until now. I'm just wondering if my former episodes have now 'hardwired' the irregularities to bring on AF?

I think it's now under control but I do wonder about changing the beta blocker to see if I feel less like the living dead would help? As seems to be the case for so many people, you get little support from the health professionals and I've been signed off from the cardiologist but I do wonder if having access to an EP would be helpful?

All advice gratefully received! Thanks.

[BobD Volunteer]

Go find an EP and demand your GP refers you. There is a list by area on the main AF Association website under patient information. You will also find loads of useful fact sheets to read as knowledge is power.You are still young so should not be put off investigating further treatment options which may include rhythm control drugs or ablation which would be my first choice.

Ask any questions here and we will try to answer. At least you are on anticoagulation so the stroke risk is reduced so some things have gone right for you.

Bob

PS Welcome by the way.

[toohardbasket in reply to BobD]

Thanks for that, Bob...I will certainly check it out and try to get a referral to an EP. I have never been happy with the diagnosis (well, who is?) and felt I got so little information from health professionals. Thank goodness for the internet and sites like this which educate us on these apparently lesser known or understood disorders.

Cheers!

Freda

[Dave1961]

HI, I wonder which ones in the U.S. you have been accessing? I've been on the myafibexperience.org/home website and its rather quiet compared to this one - Not a lot of posts and not a lot of sharing of information - perhaps because it maybe fairly new I guess but I certainly have gotten a lot more benefit from this one.

I was feeling exactly the same as you and am on Metoprolol 50mg twice a day which converts to Bisoprolol 5mg twice a day. IN the end its meant to slow your heart down so feeling tired is not unexpected.

I started magnesium supplements in January and I have to say I have felt SO much better since then. Much less of a desire to crash for an afternoon siesta and also the depression I have been dealing with for several decades has lifted substantially - it almost feels rather miraculous I have to say

Its unfortunate your AF had not been diagnosed for years and yes having AF means a greater risk of having more AF's.

Nice to see a new face round here

[toohardbasket]

Hi Dave 1961, thanks for your reply. Re US websites - stopafib.org, daily strength.org and drjohnm.org are the one's I've been on in the past. Probably a few more but can't remember their names! This one is definitely better and it helps with it being UK based so you can access information on PE's etc.

Interesting to note you've had the same experience with the beta blockers. I did try magnesium a while back but it gave me the 'runs' so stopped taking it. Maybe I should give it another go or halve the strength. That's great you've felt so much better since starting on it - very encouraging You just get fed up feeling tired and despondent!

Yes, I think my past palpitations and arrhythmia's with anxiety were the beginnings of AF although my GP says it's completely different! Oh well, regardless of whether I did or didn't have it back then, it's definitely here now!! I would like to understand more about the relationship between anxiety/stress and Afib so I'm reading up on that. It certainly seems that they are my triggers anyway.

Thanks again for your response. Keep well....

[PeterWh]

Welcome!!! You will find a ton of useful information in this forum. Search back through old posts (and save to favourites the ones you find really interesting so you can find them again!!!!

I am in persistent AF. I was getting cramps and had also got very lethargic and heavy headed. I went to GP end of February to organise blood tests thinking that it was the Bisoprolol (more likely) and possibly the Simvastatin. I was also on Warfarin. I was convinced it was the Bisoprolol particularly after having read posts on here!!!. On that day I think she measured my SpO2 as 96% or 97%. GP suggested that I buy an Oximeter. My Oximeter was consistently showing low SpO2 level (typically 89% to 95%). Went back on 18 March re blood test results and told GP about low SpO2 levels. She said you need to make sure that your hands are warm. I said I know!!! She then checked my SpO2 level and it was 93%. Hey presto these things usually don’t line up with what you are saying!!! I was “surviving” on a lower level of oxygen than most people. I cross checked the readings on my Oximeter (at the same time) with both the GPs and the hospitals at the pre-procedure assessment. Agreed with both so no inaccuracy with my Oximeter.

Simvastatin was stopped but GP didn't want to do any adjustments or changes since ablation was due in two weeks. Since my ablation five weeks ago, even though I went back into persistent AF less than 72 hours later, I am no where near as lethargic and have had very little heavy headiness. As the Bisoprolol dose has not altered it can only be a combination of the simvastatin and the lack of oxygen in the blood (? due to AF and irregularities???) that caused the problems.

[toohardbasket in reply to PeterWh]

Hi PeterWh, thanks for responding to my post.

Gosh that all sounds a bit scary - I've never heard of SP02 or and Oximeter so have had to Google it. I have a lot to learn! I'm glad you're less lethargic post ablation but it must be disappointing to say the least that you're back into persistent AF. Sounds very hard going - how do you cope with it? I'm nowhere near as bad now I'm on medication thank goodness....I found the arrhythmia's really frightening so, although I'm often feeling pretty dire with fatigue, it's not as bad as it could be....

Will they do another ablation on you anytime soon? If not, what are your options?

[PeterWh in reply to toohardbasket]

Thanks for your comments and concerns.

Oximeters are very common and easy to purchase. If in AF the heartbeat / pulse reading need to be ignored as they give a false reading. In fact both my GP and the physio (for ankle / foot problem) said about getting one quite independently in the same week. Wished that this had been suggested earlier because low oxygen level would have been picked up sooner and it could have been addressed. C'est la vie. At least I can suggest it to others, especially as they are cheap to buy.

It was a shock to be diagnosed with persistent AF and then to go through a steep learning curve (I had never heard of AF before). My consultant told be about the AFA website and that was very useful but very unfortunately I did not notice this forum on the AFA site until the end of January. It would have been a fantastic help and support to have found it in October as well as saving time.

After I had a cardioversion at the end of November I quickly went back into persistent AF. My EP consultant said that the only realistic option was catheter ablation. He took me off Flecainide as he said that there was no benefit having a rhythm drug with the AF as I had it. He also told me that he didn't think that in my case there was any chance that an ablation would work first time and that it was quite possible that I would need 3 ablations. So be it!!! I had my first one at the end of March and I am on the list for the second ablation but that may get delayed as I have moderate to severe leakage in the tricuspid valve. My EP consultant is leaving it to the valve consultant to decide whether the valve is sorted next or the second ablation.

Yes it was not easy coming to terms with it (probably made worse by the fact that I was made redundant at the end of the summer and because it was the autumn / winter period when the AF journey was starting and developing and somewhat lacking in support. Even though I was only in NSR for 71 hours after the ablation it felt really amazing but I totally resisted to do anything - I was told only the phone, TV remote control and the iPad were allowed.

[toohardbasket in reply to PeterWh]

Thanks for the info on oximeters and the issue of oxygen levels which I know nothing about. I'll look into it just in case my own fatigue is that and not anything to do with Bisoprolol.

I'm pleased to hear that their is still a good possibility that subsequent ablations may prove more successful and I do hope this is the case for you.

I was just wondering if there was a connection between you losing your job and the onset of AF? In so many cases there doesn't seem to be any rhyme or reason for it to develop and I'm always trying to find a reason 'why' when there is no obvious underlying health issue to cause it. Any theories?

Yes, I'm very pleased to have found this website as well. Even in the short few days I've been on it, I feel less isolated and there is so much info both on the AFA website and this forum. Like discovering there was a link between tinnitus and AF from one of your earlier posts. I know it doesn't change anything but it somehow helps!

[PeterWh in reply to toohardbasket]

I am sure that there wasn't any connection between me losing my job and the AF. Although not formally diagnosed (in persistent AF) until after I had been made redundant now that I have the knowledge and experiences of AF I am certain that I have had it for quite a few years but just did not add up all the various symptoms and pains and did not do anything about them - just carried on with life (a mistake I now know about). I can also identify two or three step changes which I am now sure were AF getting worse. I never had the "AF attacks" that some people get and those that do get them have the AF picked up much earlier. Part of it was me thinking I am getting on for 60 (I am now) but still trying to live life at the same pace as in my 30s or 40s!!

[Mrspat]

I stopped accessing the American site on Facebook. People are obsessed with how much they pay for their medications and comparing notes about doctors.