Newly diagnosed: Hi all, diagnosed 4th... - Atrial Fibrillati...

Atrial Fibrillation Support

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Newly diagnosed

Retired010 profile image
47 Replies

Hi all, diagnosed 4th May after episode of very rapid heart beats that wouldn't stop. Went to A & E where the diagnosis of AF was made. Stayed in for 5 days while they did CT scan of lungs and ultra sound of leg. Reason for that was that I had no symptom at all until a partial knee replacement 2nd March this year. I was violently sick after taking morphine and codeine for pain and it triggered rapid heart beat for about 6 hours. I just thought it was a side effect of medication and having been so sick. Then had 3 or 4 episodes of very rapid heart rate for 30 seconds over next few weeks. Assumed it to be palpitations as I have suffered with them for many years and had been on Bisoprolol 2.5mg to help control them. Suffer from bad health anxiety and have ectopic beats (caught on monitor). Then last week, while sitting watching tv heart started to race away unto 165 bpm and wouldn't stop. Hubby took me to A & E where diagnosis was made. Doctors thought maybe a blood clot had caused it hence the scans but all clear. Awaiting an ultra sound of heart and 24 hour monitor. Doesn't make sense. Have always had low BP, definitely not overweight, eat healthily, never smoked, 3 or 4 glasses wine a week and was very fit until a year ago when knees became painful.

A few of questions please:

They have doubled Bisoprolol to 5mg. Having read other posts, this doesn't seem to stop AF. Is it to just stop it being so bad?

Have been told that now I have been diagnosed it will happen again (so again why the Bisoprolol?) Whilst having an attack do people carry on as they feel fit - maybe be active to make the heart race so that it might settle down afterwards or just rest quietly until it passes (had it for 8 hours while in hospital).

Has anyone found that strenuous exercise can trigger attacks.

And lastly has anyone conquered this thing?

I'm sure like everyone newly diagnosed, I am terrified of it happening again. It is such a scary unpleasant feeling.

Many thanks to anyone reading my rather drawn out post!!

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Retired010
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47 Replies
BobD profile image
BobDVolunteer

Bisoprolol is a beta blocker to slow your heart rate down. It won't stop AF but will make it less traumatic. All treatment is only ever for quality of life (QOL) in other words symptom control but ablation can be long lasting but may need repeating.

Why not go to our main website (Atrial Firillation Association ) and read till you drop as knowledge is power. Ask and we will try to answer.

Retired010 profile image
Retired010 in reply toBobD

Will do, many thanks for help and advice.

secondtry profile image
secondtry

I agree with BobD there is a lot of homework to do; this is really essential so you can make an informed decision on future action.

My view is that AF for the majority is triggered by not one but a host of contributory factors that eventually cause 'the glass to overflow'. Clearly the trauma with your knee was the straw that broke the camel's back.

All things including exercise in moderation.

I am not sure anyone can confidently say 'they have conquered it' but I have kicked the can down the road for 10 years with a 'hybrid cure' of Fleacinide and a host of lifestyle changes, which include supplements.

Hope something there helps.

Retired010 profile image
Retired010 in reply tosecondtry

That sounds really interesting. Would you mind telling me which supplements you are on? Many thanks for response.

secondtry profile image
secondtry in reply toRetired010

nutriadvanced.co.uk/megamag... & Co Q10 for AF

Krill oil to reduce clotting risk

Vit D & K2 for viruses and general good health

Prostex (supplied by Lamberts healthcare) for prostate but also coincidentally contains anti-virus ingredients.

Retired010 profile image
Retired010 in reply tosecondtry

Many thanks for that.

Omniscient1 profile image
Omniscient1

Sound advice from the others here you are amongst friends here. As secondtry says, there are different triggers for different people. Scary though it is, it's not a heart attack, nor a death sentence. It's something else to manage to maintain quality of life. As Bob has said you'll find loads more info, from therapies and drugs through to travel insurance issues, on the forum and the AFA site. Best wishes, Gary

Retired010 profile image
Retired010 in reply toOmniscient1

Good advice. Still so much to learn! Many thanks

beardy_chris profile image
beardy_chris

In general, cardiologists (and I'm not one) say "exercise is good". The important thing is to monitor your response and not push it too hard. One day you might be able to, say, walk a mile in 15 minutes but the next day walking a mile feels unachievable. A lot of people expect to be able to improve, if not day-by-day, at least week-by-week.

The best rule-of-thumb that I've come across is to make sure you can still hold a conversation while exercising. It may be different each day.

Perhaps the most important thing is that AF won't kill you - just keep taking the anti-coagulants.

Retired010 profile image
Retired010 in reply tobeardy_chris

Many thanks. Having read a bit I understand the importance of the anti-coagulants. Can be a life saver! I do enjoy walking and cycling. We live at the top of a hill and getting home will always be a cardiac work out. Just wasn't sure wether that could trigger an attack or get heart back to normal if suffering an attack.

beardy_chris profile image
beardy_chris in reply toRetired010

I'm not very good at going up hills but I find just a short break (10 seconds?) means I can carry on. Some people report exercise stopping attacks or initiating them. I don't think there's a clear answer - but I'm in permanent AF so it doesn't affect me! :)

Ppiman profile image
Ppiman

My history with AFl and then AF started in 2019, to my knowledge, anyway. It sounds similar to your own. It's just a thought, but there might yet be a link with the bad knees you are suffering (or even with covid, if you've had it); although it might be down to age, also. The reason is that AF is thought possibly to be linked to the balances within the inflammatory and immune processes of the body changing with genetics, age or other disease processes.

I have always taken bisoprolol to treat AF and ectopics on an as-need basis until recently when, with a small op looming and worsening palpitations with more AF, I was told to take it daily (1.25mg). Well, despite some saying that bisoprolol won't stop AF happening, it has worked well to do just that. Whilst it isn't an anti-arrhythmic (and is much safer thanks to that), it does seem to calm the processes that can spark AF in many people, me now included. I'm hoping it will continue to do so.

Steve

Retired010 profile image
Retired010 in reply toPpiman

Strange you should mention Covid (1st time), but I also had that 2 weeks after knee replacement, so everything thing has happened in the last 10 weeks! I’m on 5mg Bisoprolol, doubled from 2.5 which I was taking for ectopic beat palpitations. No connection apparently to AF. Thanks for taking time to respond. Everyone seems so helpful on here.

Ppiman profile image
Ppiman in reply toRetired010

It’s a guess but I’d suspect covid for altering your immune / inflammatory response a little, just pushing it over towards where AF will come in. It’s worth asking your specialist, although it seems to me that even they are still in the dark a bit regarding what covid can do as it’s so very variable.

Steve

Ppiman profile image
Ppiman in reply toPpiman

Also, I find 1.25mg bisoprolol works as effectively as 2.5mg - both reducing my heart rate a bit too far really but safely so, I gather. I have read that the dose response curve of the drug is far from linear so 1.25mg isn’t necessarily a ”low” dose, as I find.

Steve

MaryCa profile image
MaryCa

I think you'll find that everyone is individual in why their episodes happen, what triggers them and how long they last. Bisoprodol did nothing for me except make me tired. I progressed to a ten hour fast AFib episode every three days. I had an ablation in Dec. Nsr since. Please buy the AFib cure by Dr John Day and Dr Jared Bunch available from Amazon. Try adding magnesium taurate and coenzyme q10 to your supplements as magnesium supports the relaxing of muscles and coenzyme q10 helps reduce inflammation. AFib and inflammation are highly linked. I had my first episode a few months after a hip replacement. Lots of inflammation. Weight and fitness were good at the time, the best they'd been in 25 years. No Q10 if you're on warfarin

.

Retired010 profile image
Retired010 in reply toMaryCa

That’s really interesting as it seems surgery for some replacement joint surgery can possibly cause it. I’ll definitely look at the book and am on a multivitamin that contains magnesium but see what quantity. Didn’t know about Q10, so interesting. As I unfortunately have quite severe health anxiety my body feels as though it is on high alert waiting for another attack. Not the best of situations!! My first cardiologist appointment isn’t until July so still trying to make sense of it all. Many many thanks for you response.

MaryCa profile image
MaryCa in reply toRetired010

You're very welcome. Dr Sanjay Gupta recommends magnesium taurate. Another member on a fb forum recommended the q10, I was getting PACs PVCs after my ablation, they massively subsided two days after starting the q10. I still get some if I overindulge in food or drinks with added sugar, but so, so, so much better. Lots of research on google scholar re AFib and inflammation and using q10. Lots there also on magnesium taurate. Oh and get a sleep study as AFib and sleep apnea are highly linked. I had little symptoms of sleep apnea except getting up during the night to use the bathroom. No fatigue, no sleepiness, no nightmares, no night sweats, no waking up gasping for air. EP insisted on me getting a study done. 15-25 events an hour. 0.4 last night, up to 5 is considered normal. Also you need an Electrophysiologist, he's a cardiologist with extra training in the electrical system of the heart.

Retired010 profile image
Retired010 in reply toMaryCa

Haven't even got a date for cardiologist or heart ultra sound yet. Just a date to get monitor fitted, so goodness knows who I will be seeing. NHS struggling a bit at the moment and can't afford to go private, so sucking up all info I can get in the meantime. Hopefully it will be someone like an Electrophysiologist but I have my doubts! Don't think I suffer from sleep apnea but still get loads of hot flushes and night sweats left over from menopause. Also on hrt patches, prescribed 6 months ago.

MaryCa profile image
MaryCa in reply toRetired010

I didn't think I had sleep apnea either, my other half hadn't seen anything either. Worth getting checked through gp.

Retired010 profile image
Retired010 in reply toMaryCa

okay, thanks for that. Will try to get it checked.

Auriculaire profile image
Auriculaire

Try not to be scared. There are many people here on this forum who have had afib for donkey's years and are here to tell the tale. The rate of progression can be very different for individuals and some people have managed to put a lid on attacks with a combo of finding the right medication regime and lifestyle changes. The knowledge and willingness to help of the members of this forum make it a great place to find info and reassurance that sadly one does not always get from the medical professionals. Sometimes afib episodes become less symptomatic ( this has happened in my case) and this can help in reducing anxiety. I have found magnesium supplementation useful. I do not think it has made much difference to the frequency of the episodes but it has helped with anxiety. This is important as anxiety can make the symptoms worse and possibly prolong the episodes. Not all meds suit all people. 5mg Bisoprolol is a hefty dose and might make you feel worse . It's main job is to lower your heart rate and some people find it helps stop episodes.

As for how you behave during an episode that is a very individual thing and really depends on how symptomatic you feel. If you feel weedy and breathless you are probably better to try and relax, distract yourself with reading , music or watching tv and wait for it to pass. Personally I try to carry on with my usual daily activities but more slowly. I have even found that a bit of vigourous vaccuumimg will put me back into NSR!

Retired010 profile image
Retired010 in reply toAuriculaire

I must admit I have felt a little spaced out and strange since increase in bisoprolol and wasn't sure if it was that or the apixiban. Blood pressure and HR both a little low but always have been. Definitely need to control my anxiety!! Many thanks for taking time to respond.

Auriculaire profile image
Auriculaire in reply toRetired010

I would be far more inclined to attribute it to the Bisoprolol.

ozziebob profile image
ozziebob

Others have mentioned the connection between inflammation and various arrythmias. In this regard, my experience is that an unknown deficiency in Vitamin D was involved in the aetiology of my AF. (see my Bio)

So I would check that your serum Vitamin D level was tested during your recent hospital stay. If not, insist your GP arranges this asap. And it seems to be the case that a large proportion of older adults in UK are unaware that they have lower than desirable Vitamin D levels.

And here's an article about Vitamin D and mortality rates that might pique your interest ...

medscape.com/viewarticle/98...

You might need to join Medscape to read the article, but it's free, and I've had no follow-on issues after joining.

Highly recommended reading.

Retired010 profile image
Retired010 in reply toozziebob

Many thanks for comments on Vit D. Have been taking it for many years as I have had a couple of basal cell carcinomas (very small) and strange looking moles that are checked yearly. Was recommended it by dermatologist, so yes good advice. Kind of you to respond.

Autumn_Leaves profile image
Autumn_Leaves

I’m also relatively new to AF so I don’t have anywhere near the years of experience that many people here have, so I defer to their knowledge and ‘expert patient’ status absolutely.

The first thing to acknowledge is that developing AF is not a failure on your part. You didn’t do anything wrong or ‘bad’. It’s not a moral failure or a character flaw either. There’s no need for stigmatising anyone if something goes wrong with their heart.

Similar to you, on paper I “should” be fine — low BP, low cholesterol, low hbA1c, and BMI at the low end of ‘normal’. No family history that would suggest additional risk either. But none of that has anything to do with developing AF. The human body is extremely complex and we’re all highly individual. Nobody can say exactly why people will develop any condition

The other very difficult reality is that AF is for life. It’s not just a one-off blip that will pass, never to return. We can hope for that but it’s unrealistic. I’ve read that people go for years before a second episode but they tend to very young when their first episode happened. We all want to be the one who beats the odds, we all want to be the exception. No one wants this diagnosis but it’s happened so you need to take it seriously from now on.

Prior to developing AF I had been experiencing a lot of ectopics. My ectopic burden had increased from a few hundred to several thousand a day. Whether this was a forerunner of AF it’s difficult to say. I’m inclined to believe it was but whether a cardiologist would say so is another matter. There can be underlying reasons for AF such as problems with the valves or some degree of (typically) left atrial enlargement, even if the heart is still functioning well within normal parameters. These are very common findings on echos for people with AF, but sometimes there’s no obvious explanation.

I read of many people who talk about how they quit drinking or how they lost weight, or that they take this or that supplement, but I didn’t have anything to change. I had been living the virtuous life for years before AF happened! Going against the grain here, but I’m not convinced by magnesium supplements. They did nothing for my ectopics. My AF episodes are so far infrequent so not taking magnesium is neither here nor there. I’m very much a believer in a food first approach but I don’t believe that food is medicine, nor do I believe that supplements are medicines (except to treat deficiencies). But that’s just me. Some people just love their supplements and they do have their place. I think they’re mostly a waste of money that would be better spent on healthy foods. I don’t think there’s any harm in trying a supplement within the recommended limits to see if there is a genuine benefit, though.

Good luck with your investigations and I hope you find a decent cardiologist/EP.

Retired010 profile image
Retired010 in reply toAutumn_Leaves

Many thank for your helpful response and my goodness you did have a lot of ectopics. I went through 2 longs spells of a year each time of having them almost daily, sometimes 8 hours non stop but there was a 10 year gap in between each episode and both bought on by extreme stress. First time put on propranolol daily and eventually that worked, but taken off it after a couple of years and last long episode a couple of years back was put on the bisoprolol daily which also eventually worked. Just have the palps a couple of times a day now. I also believe food is a great healer and although my diet is good I am looking to improve it more and even though I exercise that is something else I must increase. So there are things I can do to help myself. Again many thanks for all your comments.

lacolyn profile image
lacolyn

Hi, I'm particularly interested in hearing about your knees!

Retired010 profile image
Retired010 in reply tolacolyn

Hi there, I had a partial knee replacement 2nd March. Lots of pain so was prescribed codeine and morphine. Unfortunately I reacted to it and was violently sick which gave me six hours of rapid heart rate, not realising that it was probably AF. Thought it was just a reaction to meds. Then had a few episodes of very fast beats for 30 seconds at a time and put in down to palpitations. Not until I had another episode 10 days ago and went to A & E that it was diagnosed. In hospital Doctor looked at my operated leg and said it was swollen along the shin and said it was possible AF caused by blood clots from op. Had ultra sound of leg and CT scan of lungs and no clots found. Also had my 1st bout of Covid a few weeks ago, so could have been combination of op and covid that triggered it. Still waiting for ultra sound on heart. Had a few responses from people that have had knee/hip ops so it does make you wonder?? Hope that helps. Please let me know if there is anything else you want to know.

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toRetired010

Hi

After my operation I got OXY=NORM and 500g paracetamol x 2.

I took the former 3 days znd reduced the paracetamol to 1 and then none.

Eat lots of Vit A pumpkin and kumara.And Vit C.

cheers JOY

Retired010 profile image
Retired010 in reply toJOY2THEWORLD49

Hi, thanks for that. Not sure what oxy norm is but I had paracetamol, codeine and morphine, which made me violently sick and that prompted my first bout AF, though at time didn't realise it. Only when I had second attack 9 days later did I get diagnosed. Just looked up kumari and seen it's sweet potato which fortunately I love.

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toRetired010

OXY- NORM is a derivative of opium I presume and I used my intuition to stop using it a.s.a.p for Pain.

I always ask for a special anaesthetic so I dont feel sick. I AM UP AFTERWARDS WANTING TO EAT.

It sounds like your anaesthetic.

cheri. JOY

lacolyn profile image
lacolyn

Thank you for taking the time. I've had 3 serious nouts of Afib, separated by years of the of palpitation. Each time I've been evacuated to hospital. I had a very bad reaction to Cordorine, get like I was dying. Now I'm on low dose Bisoproplol, low dose Apixaban and that's it. Basically fingers crossed. But I do have terrible knees, increasingly so. I get tired in the early afternoon a lot too and was just wondering how your leg condition was related to the Afib but I doubt mine is. They are just wearing out I guess. Good luck my friend.

50568789 profile image
50568789

I've had paroxysmal AF for 3 years with episodes roughly every couple of months usually lasting 2 days or so. I feel the common denominator for me for a trigger is stress on the body from either physical or situational conditions. Physical exercise in moderation is not necessarily a trigger, but overdoing it is, pushes things too far. Allowing situations to become stressful is something I need to avoid, otherwise there are consequences. Getting my blood glucose levels too low, on the verge of a diabetic hypo, is another trigger. I take all the meds and try to just live the life while being wary of the consequences of stressing the body.

Retired010 profile image
Retired010

Many thanks for that. When you have you episodes do they feel like your heart is beating continuously fast or does it come and go. When mine happened it was 8 hours of my heart beating between 120 and 170 and it terrified me. I am so scared of it happening again. They gave me 10mg Bisoprolol which may have eventually worked but took several hours. I don’t know how people cope with that continually happening!

50568789 profile image
50568789

My warning sign is a tightening of the throat, sudden tiredness and hard to breathe properly - no wonder, the heart is under stress. To me it is an irregular heart beat, not particularly fast and BP only raised a bit. My pulse oximeter shows an irregular wavy line, ups and downs instead of a nice even rhythm and my BP monitor also indicates irregular heartbeat so readings may be inaccurate. I have to stop doing anything physically taxing even walking the dog, and regretfully abstain from my nightly glass of wine just in case alcohol doesn't help. Priority is to not fight it, relax and believe it will pass. I don't change meds regime (atenolol, statin , rivaroxaban and diabetes / BP stuff) and can tolerate until it self reverts a day or so later. Once was schlepped off by paramedics to A +E for a 6 hour wait and sent back home after 5 minute consultation - never again, thank you. I know it may only get worse but have given up on medics until I can't hack it anymore.

Retired010 profile image
Retired010

We experience it all so differently! This forum is so helpful, I don’t feel so alone now and everyone is so kind. I know you are right. If (when!) I have another attack I know I mustn’t panic. Doctors have different opinions. In hospital (they kept me in for 5 days) they said to not go in again unless I have pain or get too breathless and later I was told not to let rapid heart rate go on for more than an hour! Off to France in two and a half weeks for 3 weeks (Docs said I was fit to travel) so must look up what atrial fibrillation is in French. 🤪 Many thanks again for your response and good advice.

GranmaWendy profile image
GranmaWendy in reply toRetired010

docs in France are great at dealing with this if you have an issue while over there! my first ever episode occured on hol in rance and I couldnt fault the treatment I was given

Retired010 profile image
Retired010 in reply toGranmaWendy

Unfortunately just had another episode lasting 7hours and ended up back in A &E. so definitely need to find local French hospital! Yes you’re right the French medical service is second to none having experienced it a few times over the years (completely unrelated conditions) and luckily their English is better than my French!

GranmaWendy profile image
GranmaWendy in reply toRetired010

sorry to hear you had another, but good to know you are in good hands when it happens!

Retired010 profile image
Retired010 in reply toGranmaWendy

Need to find a good coping method. Do find the rapid heart beat paltilations very hard to tolerate as they are impossible to ignore and make me feel very uncomfortable. Seen a few on here so I will have to try them. Tried lots of deep breathing this morning with no success. I do think my knee replacement started mine off!!

GranmaWendy profile image
GranmaWendy

I had a not dissimilar experience earlier this year. I have had very occasional episodes of AF for the last 3yrs or so, but generally not to severe. however, 4 days after hip replacement I had a really bad one, it lasted 9hrs, and since then I have had about one a week, thankfully not as severe or lasting as long, my gp was not at all concerned. I can only assume that the stress of surgery has thrown me out of balance, and as I am getting fitter again, things are improving. I hope the same occurs for you!

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hi

Bisoprolol did not bring down H/R much.

But priv heart Specialist put me on CCB Calcium Channel Blocker Diliazem which within 2 hours took me down to 51.

So CCB suits me.

Twinked down CCB to 120mg AM

and

2.5mg Bisoprolol PM.

Controlled and after year on new regime my H/R is always 47 avge night leaves me at 62 morning BP normal now but both climb day until 5pm near when I take the Bisoprolol.

Exertion is good for the heart the public specialist and asked what I do. Walk to the top of my road and down to 4 Square shop, buying fruit - bananas etc and its harder to walk back. I turn and go backwards near the top is I have to.

Now 123-132/68-80 DAY. 62-88 H/R Day

Drs will only raise what you are on - go to a Dr's referral priv H/Spec PLEASE.

I have never been to A&E and I have a St Johns Alarm. But no chest pain - had a rApid, persistent H/R with AF.

Both Diltiazem and Bisoprolol also work on Rhythmn.

cheers JOY. 74. (NZ)

Retired010 profile image
Retired010 in reply toJOY2THEWORLD49

Just read you interesting post, after I posted another plea for help and your comments are very relevant. It does make me wonder if I am on the right meds but it is such early days for me.

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toRetired010

Hi

So with me..

BB is for blocking adrenalin. So I'm not an up tight, anxious personality hence less BB. 2.5mg Bisoprolol great. I was up to 10mg as Drs just put up dosage. I needed a change. It does regulate BP.

CCB is for blocking calcium which relaxes the heart. That saved me.

But you need to separate these drugs BB and CCB. As CCB brings down h/rate and my h/r at night is 47 I dont need it at night. Also 47 is avge so I may go lower which is quite normal. Cold shoulders and feet in winter.

Read about CCB it is so interesting.

During am operation reflux can occur so something is added to the anaesthetic and they always check the best one for me. But you must put a note in about sickness post op.

I hope this helps next time.

cheers JOY

I was done in public hospital as Specialist said I would have more support. I got 2 anaesthetics present and my specialist and a trained 2nd dr.

Retired010 profile image
Retired010

just been reading about ccb drugs and seen that Diltiazem is one of them and several people had mention how successful it was for them. I think I will have to wait for my cardio appt in July. Just got to learn to cope with episodes before then.

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