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Afib advice please

DDYTCC profile image
31 Replies

Hi All

A bit of advice please, I wrote a couple of posts a few weeks ago, basically I was diagnosed with AF in the autumn I'm 55 years old, fairly fit so it was a surprise, although looking back possibly had it for quite a while. The situation following 2 x 24hr monitors (November & March) 1 Echogram and a couple of initial consultations is that I am awaiting a possible procedure (all on hold for obvious reasons!) Limited to phone appointments with GP. My issue is I seem to have a permanent irregular heart rate (bought my own stethoscope pre Christmas, big mistake!), often dizzy and breathless, I'm currently on 5mg of Bisoprolol. Does anyone else have continual irregular heart beats, I get the impression most suffer 'attacks' rather than constantly irregular. Would like to connect with like with like symptoms Thanks

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DDYTCC
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31 Replies
BobD profile image
BobDVolunteer

Permanent AF is very common and usually easier to cope with as there are no lurches in and out of NSR. So long as rate is well controlled and you are anitcoagulated for stroke prevention there is no worry.

DDYTCC profile image
DDYTCC in reply toBobD

Thanks BobD you did respond to my previous posts 5 or 6 weeks ago as well and I do appreciate it thank you. That is reassuring, my heart beat always appears to be irregular I would say, but the resting heart beat on my fitbit is pretty much always at a reasonably healthy number. Interesting about the anticoagulant I was initially advised to take a daily aspirin but was later advised to stop taking it by the consultant I think because of some healthy blood results and first 24hr monitor, I may actually go back to my doctor and make sure that is still the correct advice. Thanks for your response

BobD profile image
BobDVolunteer in reply toDDYTCC

Aspirin is not an anticoagulant, it is an anti-platelet and whilst useful in some cardiac disease it has no value in stroke prevention for people with AF yet still has the capacity to cause harm such as gastro-intestinal bleeding. You need to ask about your CHADSVASC score (google it) to see if anticoagulation is recommended for you.

Barny12 profile image
Barny12

Is it possible that you were diagnosed with paroxysmal AF and that what you are self-diagnosing with a stethoscope are actually ectopic beats which can often feel like slow afib, but are usually more benign and far more common?

DDYTCC profile image
DDYTCC in reply toBarny12

Thanks for the quick reply Barny12 much appreciated thank you, I don't think so regarding the ectopic beats, my first 24 hr monitor in Nov, the results came back and the consultant didn't think I even had AF at the start, however the second one in early March said 'the dominant rhythm was AF' coupled with numerous tachycardia episodes so they increased my Bisoprolol to 5mg before 'being seen again in Clinic' unfortunately that hasn't happened. I feel generally quite well but I am light headed most mornings and can be breathless following minor activities although sometimes can do longish walks without problems. I have got into the habit of listening to my heart beat and I have fitbit too, it seems constantly irregular and sometimes very irregular. The rhb on the fitbit is an average of about 71 since the increased dosage (about 75-80 before this, and actually below 60 last summer. Appreciate any thoughts?

Hi DDYTCC, suggest you click on the pinned post to the right of this page titled Useful links for Newbies and Oldies. From there you will be able to navigate around the AF Association webpages design to tell you everything you need to know about AF, the different types of the condition (paroxysmal and persistent/permanent and the various options available for helping to control symptoms. To be honest, learning to feel your pulse will be much easier than faffing around with a stethoscope. You should be able to determine if your pulse is constantly irregular (persistent) or sometimes regular and other times not (paroxysmal). Because of your age, you may not have been prescribed an anticoagulant but if you have high blood pressure, diabetes or other related conditions, you should take a look at the section about measuring your CHADsVASc score and if it’s 1 or more, anticoagulation should be seriously considered. You mentioned a procedure, is it an ablation or a cardioversion because this might give an indication to which type of AF you might have.....hope this helps for starters, but most of it was mentioned when you posted a month ago.....

jeanjeannie50 profile image
jeanjeannie50 in reply to

I have a stethoscope FJ. The reason being the pulse in my wrist does not always reflect what my heart is really doing. Once after struggling to stay conscious at home with heart rate appearing normal, paramedics came and discovered it was very high. They hadn't seen anything like it before, but the consultant I saw when admitted to hospital had. So please don't pooh-pooh stethoscopes. They give a more accurate result than any machine.

Jean

in reply tojeanjeannie50

OK

jeanjeannie50 profile image
jeanjeannie50 in reply to

Aw you're no fun, you could have put up a better fight! Or grovelled more because I'm right. 😘

in reply tojeanjeannie50

Not at all, if it worked for you then it has to be OK....😉

DDYTCC profile image
DDYTCC in reply to

Thanks Flapjack will take the chance to work through the information available I guess I was in the throws of being dealt with when things changed so I think I need to educate myself more thoroughly now, with regard to the procedure I think it was cardioversion rather than ablation? Thanks again I'm sure I will be in touch this week during my AF studies.

in reply toDDYTCC

If in persistent AF, it’s normal to have a cardioversion first. Provided it works (and they usually do), even if only for a short period and you feel better for being in normal sinus rhythm, it’s a good indicator that you could respond well to further treatment such as an ablation....

DDYTCC profile image
DDYTCC in reply to

Hi FlapJack, sorry should have added I'm not diabetic and if anything have blood pressure on the lower/normal side for most of my life, any check up prior to this I always seemed to get ticks in all the boxes etc. Also really struggle to take my own pulse??? Thanks

Skitts profile image
Skitts

Bob is always on it. All I can add is ablation was a miracle for me. Four plus years so far. Some lifestyle changes helped as well probably. Meds didn't work for me. Look closely at lifestyle. Inquire on ablation. God's best to you in your journey. Lots of great knowledge in this forum

stodge profile image
stodge in reply toSkitts

That's good to hear - someone pleased with their outcome after an ablation. I've been referred for an ablation for my permanent AF but all I seem to hear about is them not working, or not working for very long. How significant were the lifestyle changes that you made?

Skitts profile image
Skitts in reply tostodge

Just moderate drinking alcohol, caffeine, better sleep, really watching salt in diet, less cigars. Just all the things they think cause this. Stress! I had all of them! I know I was lucky on ablation. I thank God a lot for that. Being otherwise healthy put me in the higher success range though they told me at the time they didn't get "all of it". I will warn you of intense short pain post op after they remove sheaths. It was really bad. Also the thinner prior post op was hard on me. Worth it!

CDreamer profile image
CDreamer

Hi and so sorry you are feeling so low. Absolutely agree with Bob re anticoagulant - conversation to have with your GP asap, that should be your GP’s priority and the explanations on the AFA website which FJ has highlighted for you will explain why.

Your pulse may indicate an irregular heart rhythm - but it won’t tell you what type of irregularity it is, only an ECG will able to do that. There are monitors such as Kardia which will do that for you but knowing whether or not you are in AF is not going to help ease your anxiety nor help your symptoms. Sometimes symptoms may be caused by drugs and many people find that Bisoprolol is one such drug but bear in mind that so can AF.

Once aniticoagulated with a controlled heart rate then all other treatments will be for underlying conditions or to improve your quality of life by lessening symptoms.

Many find that being in persistent or permanent AF not as symptomatic as being in paroxysmal AF or PAF = the type that comes and goes once your body becomes accustomed.

We are all in very unusual times but the NHS is now starting to open up clinics again so hopefully you may get a consultation with a consultant very soon and specialist advice. A friend of mine had a pacemaker fitted yesterday - now recovering very well

Florence-Nightingale profile image
Florence-Nightingale in reply toCDreamer

I have to agree. I was in PAF ( intermittent attacks) for six years felt awful and anxious each time an attack happened. I am now in permanent AF and strange as it may seem feel a lot better. Anticoagulant is an absolute must.

Barb1 profile image
Barb1

After 4th ablation with no AF for nearly 5 years, I had ectopics and some 'funny turns' and am now in Persistent AF. I say persistent not permanent because that has not been proved yet. Normal procedure would be a cardioversion (after a TOE to check for blood clot) to see if I can be reverted again then looking at another ablation, if it can be done. Meanwhile I am living with an irregular very fast heart rate. It is debilitating but I can live with it. I monitor with a BP machine and a vascular monitor. I feel very happy that I am on an anti coagulant.

KMRobbo profile image
KMRobbo

Your fitbit will not be showing a correct HR if you are in AFIB. I sufferred from high rate afib. I felt a bit odd one night whilst away from home early in my afib journey and my wife's fit bit showed my hr in the 80s I think. A day later when I returned home I put on my Garmin running watch hr chest strap and I was actually at 150/160! ( initially I was diagnosed afib owing to the Garmin). The fitbit still showed in the 80s.

As for taking pulses, I could never count my pulse on my wrist in AFIB, but if you use a finger on your neck approx 3/4 to one inch below the corner of your jaw on the left side best, you will get a better pulse. If the pulse is completely random probably afib. However since my ablation I do think I have had afib but have long runs on occasion of ectopics . These ectopics present as apparently "missing " beats which are in reality an extra beat that empties the heart before the next regular beat which you don't feel owing to the heart being empty. I am not medically trained and am happy to he corrected but if I have a missing beat and the next beats are regular until the next missing beat then it is probably ectopics. The more frequent the ectopics the more overall the sensation is of irregularity.

I can "miss " the 3rd beat, then the 12th, then the 7th, then the 38th then the 21st, but beteen the 7th and the 38th the beats are regular. Consequently I think mine are ectopics. When had afib the pulse did not seem to have any pattern but i always presented as a high rate, and it is very difficult to count hr above 130 anyway! Whatever it will give you some thing to describe to your doctor if you try this .

As others have said an ECG would be best.

The symptoms of breathlessness you describe could be caused by the 5mg bisoprolol . Just 1.5mg bisoprolol made me breathless with other terrible side effects.

Please also note that bisoprolol is primarily a rate control drug, it is not really anti arrhythmia, you would require a rhythm control drug such as flecainide for this.

Best wishes

DDYTCC profile image
DDYTCC in reply toKMRobbo

Thanks KMRobbo I appreciate the reply very informative particularly re the Bisoprolol thanks

whiteface profile image
whiteface

I had episodes of AF for the last 20 years but it became permanent two years ago. I don't have any symptoms, don't take any medication and continue to live the same way I have always done. The only time I notice it is in bed when it can get pretty irregular and quite jumpy. My advice would be -- ask yourself if your dizziness and breathlessness due to AF or to your worry about AF?

DDYTCC profile image
DDYTCC in reply towhiteface

Thanks whiteface appreciate the quick reply much appreciated, yes sadly I don't think it is the worry although I do have worries and anxiety about it of course which won't help, unfortunately I believe it to be definitely physical and due to the AF (with possibly Bisoprolol adding to the symptoms potentially) An example is bending down in the garden of late doing fairly low intensity jobs has left me breathless to the point of sometimes giving up with the job after 5/10 minutes!! Thanks

whiteface profile image
whiteface in reply toDDYTCC

The other thing I forgot is about your pulse rate. I am blessed as my pulse remained about the same with or without AF (55 bpm). If your pulse is elevated or depressed, then you probably will have other symptoms and will need to do something about it.

Jaws66 profile image
Jaws66

I've had permanent AF for about 15 years; 53 years old now, taking Verapamil but not anti coagulant. I was initially advised to take aspirin, but the advice changed a few years ago because of side effects taking it long term. I run regularly, and do almost all the things I did before - I just can't sprint or climb hills like I used to before. AF itself has minimal impact on me, apart from side effects of the tablets. I do the sensible things - eat lots of fruit and veg, exercise, take a vitamin supplement, but otherwise I try to not to let it affect me too much.

If you are having breathlessness and dizziness I would go back to your doctor/specialist and push them until you get an answer that satisfies you. Worrying about it can really can get you down; my cardiologist welcomes questions and the chance to explain he makes decisions.

DDYTCC profile image
DDYTCC in reply toJaws66

Thanks so much Jaws66 for the reply, much appreciated, can I ask when you say you 'can't sprint or climb hills' what happens if you try to? Do you get breathlessness and dizziness, or chest pains etc? Just wondered what actually you are feeling when you do too much etc

Thanks Dave

Jaws66 profile image
Jaws66

Breathlessness - I feel like my throat has tightened up. No chest pain or dizziness.

Annie2609 profile image
Annie2609

I had a lot of breathlessness when I started taking Bisoprolol and probably for the first 2-3 months of the treatment. To the point where I had to pause while talking to people. I am on 5 mg. Now I feel better and started doing daily breathing exercises. I wish I could stop or reduce the bisoprolol..

DDYTCC profile image
DDYTCC in reply toAnnie2609

Thanks Annie2609, very interesting to hear your experiences with Bisoprolol I'm not sure whether its the medication or my condition that's making me breathless, dizzy/light headed etc I have good days and some not so good days. I appreciate the response thank you

Annie2609 profile image
Annie2609 in reply toDDYTCC

You are very welcome. I'm still taking the full dose of Bisoprolol, but I am convinced that my PVC's could not have caused so much breathlessness. If that was the case, I would have been in hospital by now. I also talked my doctor and she said it's not the Bisoprolol causing this... doctors are just trained for normal reactions, but people are so different and react in such different ways to these medications. The fact that I am still on Bisoprolol, acknowledges that I still can see the good effects of the medication (although I keep having PVC's every day). I just cannot deny the bad effects either...

DDYTCC profile image
DDYTCC

Hi All Thank you for all the responses much appreciated. Since my initial post 5 days ago I have been navigating the information and managed to have a phone consultation with my GP. He has stated that he feels it is permanent AF but feels a procedure may work and that the procedure would likely be a cardioversion initially. He will discuss my case with the consultant cardiologist at the hospital but clearly this all may be some time away before anything happens. With regard to the anticoagulant issue he felt that after the CHADSVASC score of 0 and the Annual risk of stroke at 0 percent at this stage he advised against taking one? perhaps from what I have read on this forum that prior to a procedure I would need to commence taking one anyway? Regarding the 5mg daily bisoprolol he would like me to continue at this level although I am keen to reduce it as I don't feel too much improvement. In a nutshell he thought it was the AF causing my symptoms and nothing more sinister but can I again confirm does anyone else have/had specific symptoms like a feeling your chest of just a mess of grinding, bumping and pumping in other words unbelievably irregular (although never an overly fast heart rate? Terrible use of English I know but there is at times no regularity to the irregularity if that makes any sense! At times it stops me walking let alone jogging or more strenuous activities (lifting a no no!). Breathlessness and dizziness whilst very short in frequency occur virtually daily? Thanks again

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