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Af or something else?

Nickybhf profile image
44 Replies

Hi everyone,

I’m a carer and look after my mum. She was diagnosed with AF in May 2022. She’s on bisoprolol and Apixaban and also water tablet. The medication seemed to help with symptoms of AF but recently mum has been feeling anxious most days. When I ask how she’s feeling, she says she cannot describe it, sometimes she says it feels like her hearts beating fast, and other times she says she feels agitated and cannot relax at all. She’s been feeling like this most days now for at least 2 weeks. The GP has prescribed Promathezine to try and help mum relax. She takes it when she’s having these episodes and does get very sleepy. I’m trying to work out whether this is anxiety or a physical problem. I’m so concerned that I have booked an appointment privately to see a cardiologist. I’m hoping they can rule out and physical changes or decide whether current medication needs to be adjusted. Does anyone else experience this? It’s so confusing as I worry whether this is anxiety or the AF.

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Nickybhf
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44 Replies
jeanjeannie50 profile image
jeanjeannie50

Hi Nicky

What dose of bisoprolol is your mum on and do you know what her blood pressure and heart rate is?

Jean

Nickybhf profile image
Nickybhf in reply to jeanjeannie50

Hi Jean,

Mum is on 3.75mg

She was on 2.5 but was increased last year around summer. The blood pressure varies, it’s been 164/104 , but then it’s come down to 134/89

I check mums pulse with an oximeter, it fluctuates, around 83 , sometimes 75

jeanjeannie50 profile image
jeanjeannie50 in reply to Nickybhf

Is that 3.75mg of bisoprolol daily or twice daily. Sadly oximeters are not very accurate when used on people with AF, though oxygen levels should be ok. I paid £30 for mine and it has never appeared to be accurate, levels change depending on what finger I have it on.

I had a situation where my heart rate was beating too fast to be measured in my arm. I couldn't understand why I was fighting to keep conscious when my heart rate appeared to be in my 60's. Dialled 999 paramedics came and were most bemused at how my wrist said ok but when they put an ECG on me it recorded 3 times that of my wrist. they had a good discussion about it as had never seen before. They took me to hospital where a consultant said he had seen it before. Just wondering if that could be happening to mum. My GP told me to always take my pulse via the carotid artery in the neck.

Jean

Nickybhf profile image
Nickybhf in reply to jeanjeannie50

The bisoprolol is once daily.

Thanks for that, probably explains that I’ve been relying on the oximeter assuming it’s accurate. I will try checking mums pulse on the neck instead.

Skertchly profile image
Skertchly in reply to Nickybhf

I take bisoprolol . I have bought $180 smart watch that measures pulse and glucose level temp. Etc. I recommend

Buffafly profile image
Buffafly

Does your mum have paroxysmal or permanent AF? Can you feel the AF in her pulse? AF, especially if it’s fast does make people feel anxious and unsettled and sometimes breathless. It would be useful to know if she has these feelings when she has fast AF because it would certainly cause them. Unfortunately an oximeter is no use for AF rate but it would show AF is happening because the bars would be very irregular and struggle to pick up a fast rate.

Nickybhf profile image
Nickybhf in reply to Buffafly

Thanks for reply, I think it’s paroxysmal but I’m unsure to be honest. I’m certain mum gets these feelings during episodes of AF but now I’m realising that you’ve said the oximeter is no good and previous reply says the same.

Buffafly profile image
Buffafly in reply to Nickybhf

As Flapjack said it is worth reassuring your mum that the AF is not life threatening and that her sensations are a result of her body realising that things aren’t right. Anxiety in AF can often be a vicious spiral ❤️‍🩹

gbn_ profile image
gbn_ in reply to Buffafly

Hi Buffafly. So true, going through it right now, gettiong ready to send in yet another post about it.

mjames1 profile image
mjames1

"she says she cannot describe it, sometimes she says it feels like her hearts beating fast, and other times she says she feels agitated and cannot relax at all. "

----

Unfortunately, if you see a cardiologist or EP, privately, and describe the episodes the way you have above, they may not take you very seriously, and you could be wasting your money.

My suggestion is to get a home EKG device called Kardia 6L. In 30 seconds it will take an EKG and transmit it to your smartphone. You can then share that EKG with your doctor.

I have found mine invaluable. It gives me peace of mind because it takes the guess work out of things.

Jim

Nickybhf profile image
Nickybhf in reply to mjames1

Thanks for your reply, I will have to think very carefully about wording to cardiologist as we’re desperate to get help.

I have seen something about the Kardia 6L that you’ve mentioned, will try and look into this. Our appointment is in just over a weeks time, I just hope we are heard!

mjames1 profile image
mjames1 in reply to Nickybhf

It's not so much of the wording, it's just that if they're not looking at an EKG, they are only making educated guesses as to what's going on.

Don't put yourself under pressure, but if you can get the kardia 6L prior to the appointment it will give you more information to bring to the meeting. I have both the single lead and the six lead and for a little more money, you're getting a much better product that's just as easy to use.

If you don't have time to get it maybe your doctor will have her wear a Holter monitor and try and capture these episodes.

FWIW I also felt very agitated when taking a beta blocker like bisoprolol. My doctor switched me to a calcium channel blocker, called Diltiazem. Anxiety gone! Something to speak to the doctor about.

Jim

gbn_ profile image
gbn_ in reply to mjames1

Jim, when you were taking the beta blocker bisoprolol, is it similiar to metoprolol? Looking for a way to get these anxiety feelings lowered or gone, willing to try anything at this point and trying something different than my metoprolol. Because Diltiazem is a calcium channel blocker, could you take it right away after stopping your bisoprolol, or did you have to wean off it before you took the new medication?

mjames1 profile image
mjames1 in reply to gbn_

I never took Bisoprolol, just Metoprolol. But both drugs are beta blockers and very similar. Like I said earlier , metoprolol gave me very bad anxiety. It has also done that with some others. And in your case, I think that may be all that is going on.

Depending on a number of factors, they may want to gradually wean you off Metropol while they introduce Diltiazem. . Or not.

I would make this issue a priority when you speak to your doctor.

Jim

gbn_ profile image
gbn_ in reply to mjames1

Hi Jim. Can't thank you enough, great reply. All I can do at this point is mention it at my next doctor visit, I'll post if anything changes with me with meds or anything else. Your replies are very much appreciated with me.

MWIC profile image
MWIC in reply to Nickybhf

Nicky this is what I did - bought a Kardia and booked a private appt - the EP took my phone and went through all the readings I’d taken and said clearly Paroxysmal AFib and Flutter showing - I’d had real problems getting diagnosed as whenever I had an appt I never had an episode so nothing showed up - best money I ever spent (Kardia and the Private Appt). Appreciate you’ll be really worried as it is worrying and this doesn’t help but this is way more common than most realise and the EP’s are well versed in it - Some GP’s unfortunately don’t seem to be

Singwell profile image
Singwell in reply to Nickybhf

I'd recommend the Kardiamobile too. I recognise what your mum's talking about in terms of sensation- I experienced exactly the same when I was first diagnosed. Our heart has thousands of neurons that act like a mini brain (you'll have heard of the 'gut brain' probably). That mini brain can send distress signals to the main brain, triggering unease and anxiety when the heart is out of rhythm. The heart is literally expressing distress. You could try helping you mum to do slow breathing when she feels like this, it will help calm things down so she can feel more in control. You can DM me if you'd like me to share a breathing exercise I use that you and your Mum could do together.

mav7 profile image
mav7

Nickybhf Reading your past posts, has your Mum been able to see a cardiologist/EP initially ? You stated one appt was cancelled.

If not and necessary due to lack of appts, seeing a private cardiologist/EP seems best for a thorough evaluation.

Would be good to review with the GP the need for Promathezine. Side effects align with her symptoms. (link below) If you have not seen, second link is living with afib.

Best to you and your Mum.

.drugs.com/promethazine.html

healthunlocked.com/programs...

Nickybhf profile image
Nickybhf in reply to mav7

Thank you so much for your reply, we were seen by a cardiologist eventually last year around May time, but he didn’t do and tests, he told mum she doesn’t need the water tablet, and we were discharged. Not long after stopping the water tablet, mum’s symptoms began so after numerous calls I made to the cardiologists secretary, she advised that consultant recommended that mum started tablets again. I did question when they could see mum again, I was told probably around August this year! So I’m glad we’re going to go down the private route. Thank you for sharing the links.

Hello Nicky, your Mums lucky to have you looking out for her. No one here is medical trained and because AF is what is known as mongrel condition, it’s virtually impossible to give you meaningful answers but that doesn’t prevent us from try to give you a steer. Given that she has been prescribed a beta blocker and an anticoagulant, assuming she had an ECG (12 pads stuck on the body all connected with wire to a medical printer), we can be fairly sure she has AF but I think you know that.

From what you have said, it could be persistent (24/7) or paroxysmal (comes and goes). Often but not always once medication has stabilised, so does the heat rate and as has been said, checking the pulse shouldn’t be too difficult for you get a guide as to what the pulse is doing. You need to bear in mind that it’s really difficult to distinguish the difference between AF symptoms and the side effects of some beta blockers, especially Bisoprolol. Getting a Kardia as suggested is a good idea and a 6 lead has certain advantages over the simpler and cheaper single lead version. Obviously a personal choice but unless your mum is getting significantly different sensations, the feedback we get seems to suggest that the single lead is less complicated to use and you don’t want to unnecessarily add to your mum’s anxiety levels. Another thing which occurs to me is if there is anything which could be impacting on her anxiety and causing the rate to fluctuate apart from AF. Christmas can be stressful, particularly if you are not feeling too chipper so that, or something else could be contributing to her current problems. A lot of people get quite dark thoughts when they are first diagnosed and regardless of her age, Christmas can be a sensitive time. Perhaps if she was assured that as long as her AF is controlled, which it is at current heart rates of less than 100 bpm, AF doesn’t reduce her life span. If she doesn’t settle, then apart from making a hole in your/her bank account, a private appointment to review medication and perhaps try an alternative such as Nebivolol or a calcium channel blocker which is what I take with no problems would be a good idea…..hope this helps.

Nickybhf profile image
Nickybhf in reply to

Hi,

Thank you so much for your reply. I think I definitely need to look into getting the Kardia.

I don’t believe mum has concerns about anything in general which could cause the anxiety, I frequently ask if she’s worried about or concerned about anything. She says no .

Do you think the bisoprolol could cause some of the side effects? Like anxiety feelings?

I will hopefully discuss alternative medication with consultant, my only concern about changing medication is that mum took a good while to get used to the beta blocker and blood thinners. She suffered side effects initially but in time got used to the tablets.

Thanks again for your reply.

in reply to Nickybhf

If you were your Mums age and one of your youngsters asked if you were worried or concerned about anything, I wonder what you would say…..😉

Hope she’s settled a bit. I was only on Bisoprolol for a short period after I was diagnosed. I was in a bit of a state so couldn’t really say if it was anything to do with the medication or my state of mind……

Nickybhf profile image
Nickybhf in reply to

Mum has been on the bisoprolol since she was diagnosed so it’s been 20 months, so I’m thinking surely she would have experienced symptoms like this a lot earlier on.

Rainfern profile image
Rainfern

Hi Nicky, we all have different backgrounds and experiences on this forum and thought I’d add this in case it’s useful to your mum. Take or leave it! I trained as a counsellor and learned to be quite sensitive to emotional and physical changes in myself. The feelings of anxiety that I experience with AF are definitely different from what I would describe as “normal” anxiety. Although both clearly involve the parasympathetic system, my AF anxiety has with it a hollow, sinking feeling in the heart area, almost like a kind of heartbreak though my heart is not broken! This in turn triggers the alarm systems and the fight or flight mechanisms go into full swing. I had persistent low level AF until a recent ablation and was on minimal medication. I was able to control the anxiety with the use of a relaxation app (Balance) daily practice of meditation and breathing exercises. I am not normally an anxious person, but developing these skills since having AF is something I’m really grateful for. I hope your mum soon feels better.

gbn_ profile image
gbn_ in reply to Rainfern

Hi Rainfern. You've absolutely nailed what this type of anxiety feels like, it a "sad" type of anxiety.

Rainfern profile image
Rainfern in reply to gbn_

It’s not just me then! It might be worth putting up a separate post to see if others share similar experience.

Buffafly profile image
Buffafly in reply to gbn_

Well known symptom described as ‘sensation of impending doom’.

gbn_ profile image
gbn_ in reply to Buffafly

Hi Buffafly. Yes, exactly, very un-nerving when it hits, and anything else that might be going on seems to be greatly magnified by it. The slightest worry at any other time seems so much worse by it.

Nickybhf profile image
Nickybhf in reply to Rainfern

Hi Rainfern,

Thank you. So relaxation techniques can help? I have been trying to get mum to do some deep breathing to feel more relaxed. Thank you for replying .

Sixtyslidogirl profile image
Sixtyslidogirl

just to add to the anxiety picture. I have PAF, but get the anxious feeling also when having a lot of ectopics. A Kardia will give you much more information which in itself might helpful in reducing anxiety.

Nickybhf profile image
Nickybhf in reply to Sixtyslidogirl

Thanks, so when you check readings on the Kardia, does that help settle anxiety knowing that it’s a physical thing that’s happening rather than anxiety?

Snowgirl65 profile image
Snowgirl65

When I was first diagnosed with a-fib many years ago, I told my EP that I thought it was brought on by anxiety, that I would hyperventilate when anxious. He said it was the other way around, that my poorly beating heart was causing the feeling of anxious hyperventilation. It took years to realize he was right.

Nickybhf profile image
Nickybhf in reply to Snowgirl65

Thanks for your reply. It does seem most likely with this condition. Is there any techniques you use to try and feel less anxious?

Ppiman profile image
Ppiman

A racing heart can start off feelings similar to anxiety, and, indeed, create powerful anxiety itself. My mother had similar, and I have inherited it. Have you thought about buying something like a Kardia or (I think much better as it can take much longer readings) a Wellue AI ECG home device? That will be cheaper than a private appointment and would give your mum's GP some useful information.

Steve

Nickybhf profile image
Nickybhf in reply to Ppiman

I am definitely considering buying the Kardia, my only concerns if it shows results of a racing/fast heartbeat, is mum going to feel more anxious? I don’t want her to feel any worse than she is at the moment.

Ppiman profile image
Ppiman in reply to Nickybhf

I think the only use the Kardia would have for your mum would be to produce some ECG traces that her GP or a cardiologist can view and use to help diagnose what is going on. In that respect, I prefer the Wellue 24-hour AI ECG as this can be run for much longer (from 5mins to 24 hours) so is likely to capture issues that are sporadic, and the AI analysis gives a lot more information from the trace than does a Kardia (which can also run for only a few minutes). You wouldn't want to run it for 24 hours, of course, but maybe 30 minutes or whatever is required to capture your mum's pulse she is feeling most symptomatic.

Promethazine is an older type "sedating" antihistamine mostly used for travel sickness, if I recall. I guess that the doctor likely gave it to help your mum sleep? The problem with these tablets is that the drowsiness can hang on for hours and into the next day. It could even cause your mum to be a bit unsteady, and that is not a good thing (although I don;t know her age or other health conditions).

Steve

Snowgirl65 profile image
Snowgirl65

I guess my favorite technique is to breathe through the stomach (watch your stomach go in and out as you breathe) as opposed to shallow chest-breathing. I would find myself doing the latter when I was anxious. It's not always easy to remember to stomach-breathe when under stress! I would first breathe in so my stomach would expand; then further breathe to fill the chest; then s-l-o-w-l-y let the air out as far as you can go while pursing your lips as though whistling, pulling the stomach muscles in. Try doing that in the ladies' lounge at work and not be conspicuous! That was my life in my working days.

Nickybhf profile image
Nickybhf in reply to Snowgirl65

Thank you for your reply. That’s a good technique and I think the fact that you’re looking at your stomach is somewhat a distraction. Might get mum to try this.

Karendeena profile image
Karendeena

Hi there, I have paroxysmal afib and struggle the same. I am often anxious and have difficulty staying asleep. I am told that anxiety comes with the territory I'm afraid. I get very jittery and panicky even when I'm not in afib 🥺

Nickybhf profile image
Nickybhf in reply to Karendeena

Hi Karendeena,

My mum also has problems sleeping, too, its horrible that the anxiety I guess is something you have to get used to.

fibnum profile image
fibnum

I have never been one to accept "It's all in your head." claims about illness and pain, but dealing with random, unexplained onsets of Afib can, quite understandably, make us pretty paranoid. Separating that anxiety from symptoms of illness can be difficult. As others have suggested, check your mother's pulse a few times a day and, of course, when she feels discomfort.

In my experience, Afib always presents as a very erratic pulse. I hope the cardiologist can sort it out for her.

Nickybhf profile image
Nickybhf in reply to fibnum

Thank you for your reply, honestly I hope we get some help and advice at the appointment.

JaneFinn profile image
JaneFinn

Hey Nicky, I’ve only just seen your post and wanted to say how lucky your mum is to have you caring and looking out for her :)

I see you’ve had a wide range of brilliant answers and suggestions on here, which shows people’s wide ranging experiences of AF. I’d add my own agreement from personal opinion that an anxious, jittery, agitated feeling can come simply due to AF or other arrhythmia. Not from the fear of AF, or the meds I’m taking (though both of these can totally cause it too, and are worth exploring).

I know this because as soon as my heart goes into fast AF (mine is always fast) the tense agitated anxiety feeling starts - that’s how I know I’m in AF. And when it converts back into normal rhythm, I know the instant it happens because the anxious agitated feeling goes instantly, and I’m flooded with a relaxed sensation. I then check on my pulse or Kardia to confirm the AF has stopped. Knowing that it’s AF and it’s not harmful does not stop the agitated anxious feeling happening when I’m in AF, it’s not caused by my mind. It’s a physical sensation caused by the arrhythmia. (But breathing exercises and relaxation do help me get through it without shooting the rate up higher - so the mind can help.)

Everyone is different and other things make me anxious or doomy too- but I wanted to say this because it’s important your mum is believed and not dismissed like a lot of us were for years. I was always told it was anxiety until I could correlate it with what was happening with my heart.

I agree a way of recording the heartbeat at the times she’s feeling like this would be most helpful, then you have information a GP and cardiologist can work with. In the old days we’d just wait to get wired up with a portable monitor through the NHS, but the quicker options such as Kardia and Wellue might be possible? (The Wellue I believe records all day and doesn’t need her to activate it at the time of the event, but I haven’t got one so someone else such as Ppiman could confirm this better than me.)

If she’s feeling it much of the time lately, if you could persuade the GP to take an ecg at the time, that might help? But I guess it could be coming and going in and out of arrhythmia, which can be harder to catch. There’s no harm intermittently physically checking her pulse (at her neck) when she’s feeling that way, and at least you’d know if it’s irregular or fast.

Good luck- please do let us know how she gets on. Jx

Nickybhf profile image
Nickybhf in reply to JaneFinn

Hi Jane,

Thank you so much for your reply. I’m so glad that this group is available for support. I’m constantly worried for mum, to the point where it’s having an impact on me. When I read peoples replies, it definitely helps to put my concerns at ease as I can see how many people have similar experiences. I’m glad you’ve mentioned about it not necessarily being in the mind as I’ve doubted a lot of the time that maybe it’s in mums mind. I don’t believe it is but as this horrible anxiety is difficult to describe in words, you almost start believing that it’s a mind thing. Hopefully we get to the bottom of this by getting help from the cardiologist. Thank you again

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