Mis diagnosed?: I'm beginning to wonder... - Atrial Fibrillati...

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Mis diagnosed?

YannyD profile image
30 Replies

I'm beginning to wonder if I've been misdiagnosed with Paroxysmal AF? I only feel mad heart beat after alcohol. I'm taking Pradaxa and Bisopropol 10 mg. Is it the meds working excellently or do I need a second opinion? I read posts on here and I'm either truly lucky or misdiagnosed. I can get out of breath walking up hill, but is that because of the meds? Ive benn to hospital once after a mad racing session and was diagnosed. I've had tests but not seen an EP. I'm confused and suppose in shock. I'm a non smoker, drink rarely,not over weight, woman of 61. Any thoughts would be appreciated. Thankyou.

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YannyD
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30 Replies
Beancounter profile image
BeancounterVolunteer

Hi Yanny

Well obviously none of us are medically qualified nor know enough about you to really comment, but an AF diagnosis once you have an ECG is pretty clear for someone who knows, and if you have a prediliction to AF after alchohol, then there may well be other triggers.

Remember also that you don't necessarily feel every incident of AF, the fibrilliation can occur while you are asleep or awake without your knowledge, we are all different in this.

You might chat to your medical advisors about wearing a halter monitor which will measure you over a longer period to check.

Be well

Ian

YannyD profile image
YannyD in reply to Beancounter

Ahh! I hadn't realised it could be picked up on ECG as when I had that done I was OK. I've been put under the GP with no follow ups from hospital. I just feel like I've had an attack and now meds for life. Its been explained to me the ins and outs if what happened, but I seem to have just been left to my own devices now. No follow up unless I feel I'll. I was wondering if the b blockers could make me breathless. Thankyou for your answer.

Mercurius profile image
Mercurius

Hi Yanny

I newer feel anything. I see my afib only on ECG. This type is the "silent" afib. Usually it is found by c hance. This means that we have good cardiac reserve. Even during afib event sufficient blood is pumped out by the heart.

Mercurius

YannyD profile image
YannyD in reply to Mercurius

Sounds like me then that too. Thankyou.

Goldfish_ profile image
Goldfish_

Sounds like the correct diagnosis has been made and you are lucky having so few symptoms.

A further opinion from an ep may help, but you may have to go privately for this as there doesn't sound a good clinical need for this

YannyD profile image
YannyD in reply to Goldfish_

You,ve put my mind at rest there. I'm on if the lucky ones. Thankyou.

Gilldy profile image
Gilldy

Hi I was diagnosed with AF last August. I've since been told (by a stroke consultant) that there is no evidence of Afib. Apparently the consultant who originally diagnosed me was looking at an unedited ecg. When 24 hour ecg's are uploaded a technician goes through them before they are sent to the consultant but somehow mine was seen before this process. Whilst it is unlikely this has happened to you it's worth asking. I was particularly relieved as I couldn't tolerate the NOAC's.

YannyD profile image
YannyD in reply to Gilldy

Thankyou. Its the thought of 25 yrs taking meds that's getting to me. I know there,ll be consequences later in life. Thankyou

Personally, I'd pay for a private consultation with an EP. That's what I did and my only regret is not doing it a year earlier. It cost me about £150-200 (that was 4-5 years ago). He did an ECG himself, got nothing, so arranged a 24/72-hour monitor. The results showed some AF and he put me on drugs that are not available through my GP, and I'm fine now.

YannyD profile image
YannyD in reply to

I think I will do that. My minds in a quandry. Thanks. Did you go through your GP?. Thankyou.

in reply to YannyD

Yes, I said to my GP that I wanted a private referral to a Heart Rhythm Speciliast (that's what my EP calls himself). She immediately agreed and said they had one locally. But I asked to be referred to a specific EP in Birmingham (50 miles away) who's with BMI and had treated me 10 years before, and she did this for me no problem.

He had to try 4 different drugs to find the one for me. All that took about 4 or so weeks and all the changes were done over the phone and email.

YannyD profile image
YannyD in reply to

Thankyou. I'm making a GP appointment. No good worrying. Thanks.

Chris147 profile image
Chris147 in reply to

Kill can I ask what you take. Regards Chris

in reply to Chris147

Not sure it matters because what works for me may not for you and vice versa. But out of interest I'm on Disopyramide.

Polski profile image
Polski

10mg of Bisoprolol seems a lot, unless it is actually to treat some other problem eg high blood pressure. The way forward could be to discuss decreasing it (very slowly) with your doctor. AF may appear to increase initially, as it may take a week or two for your heart to adjust after each decrease, but after that you may feel less breathless, and possibly know better what is happening - or not.

YannyD profile image
YannyD in reply to Polski

I did ask about a decrease and he wasn't happy to do it. We seem to have locum doctors and I'm sure they're scared to commit as they don't know my history with this. My hubby says he can't feel his heart beat at all and I can feel mine 90% of the time. Its not banging but its more pronounced than his. To me you see its normal. Thankyou

Get an appointment for a private consultation; this is what we did. Husband had tests done and nothing showed. we went back to the hospital and asked for a review, 72 hour halter/holter test done, nothing showed, so husband is no longer being treated for PAF, this is nearly two years ago. Sometimes mistakes are made and sometimes these mistakes can lead to very serious repercussions. I have had medical training and went with my gut instinct regarding husband's diagnosis. Getting second opinion is so important.

Jamila123 profile image
Jamila123

Hi

Glad you feel well

You should have had a cardiac work up which includes 24 heart monitor not sure if u did have

As for the shortness of breath it could be anything including side effects of your medications...research the side effects of your meds

But you need to discuss this with your cardiologist

Then learn to take your own pulse usually poeple with paf usually feel when its there😬

Sometimes we need be in charge of our own bodies

Research research research is what i say

I was diagnosed with PAF i am not on any medications but thats my choice my heart rate is always low at resting 60

So why would i take a beta blocker which can lower your heart rate cause falls and collaspe for no reason When my heart is beating in a normal sinus rhythm

I informed my cardiologist at the time and he agreed

Stop alcholo completely becauses it maybe a major trigger for you its toxic for the heart

What i am trying to say is keep heathy be aware of what goes on with your body

Understand afib and dont just be told to take drugs you are allowed to question and disagree with Heath professional

Are there to give us informed information and then we make our choices

Many heathly young people can also get Afib and because no one knows whst really causes it yet its still a guessing game

My theory is that if the body is pushed to a limit and becomes very acidic via stress or too much much excerise then i think the heart gets irritated but thats just my way of thinking 🤓

Best of luck

🌺

YannyD profile image
YannyD in reply to Jamila123

Thankyou. No I've not had a cardio monitor. The alcohol is 2 of those tiny bottles of wine on Sat evening. I'm fit and healthy other than this. I agree the b blockers , as far as I've been told keep me at 60 BPM and I've timed it and it seems right. I feel I have just been put on meds and to go away unless something goes wrong. I may be looking for a way out? Lolol. But I do need to know I've been diagnosed properly. Thanks for your post, I'm phoning my doc this afternoon, see what's what. Your right I need to take charge of my own condition and wise up to it. Thankyou.

Jamila123 profile image
Jamila123 in reply to YannyD

🌺

RichMert profile image
RichMert

'Ive benn to hospital once after a mad racing session and was diagnosed.'

This is the clincher. It is really difficult to capture PAF so if they found it during a hospital visit then, there is no dispute. I am told that most of us will have AF by 65, I beat that by 16 years.

Omniscient1 profile image
Omniscient1

Hi

I too have 'no symptoms' but I definitely have AF. I would say that if you've had an ECG I believe its pretty obvious The heart beat does not have all of the components of the traditional pattern you see , e.g. some of the peaks and troughs are missing. And of course the actual rhythm will be varying (slow, slow, quick quick slow -or whatever).

On Bisoprolol, it does slow you down and may account for some of your tiredness symptoms. If you're in the UK you're entitled to a second opinion so maybe you should do this

Good luck

Gary.

Dodie117 profile image
Dodie117

Breathlessness is a well known side effect of bisoprolol and as a number of people have said 10mg is a high dose. I was on 2.5 and it made me very breathless. Taking a short walk was very difficult. I would tell GP you want to reduce it.

AF is difficult to diagnose if you are in the early stages and only get the odd episode. This is even more difficult if you have no symptoms. It needs to be seen on ECG to be certain. There is a Kardia machine for personal use which cost about £80. It does an ECG that you can show consultant. However it may not be much use to you if you can't feel the arrhythmia when it is happening. Do you feel it when you have the wine?

As others have said, ask for EP consultation good luck 🍀

YannyD profile image
YannyD in reply to Dodie117

I felt heart bumping the day after I had 2 small wines and a tiny brandy. I've been on ECG so reading here that confirms the AF. Maybe I do just need to ask if its safe to lower the bisopropol. Thankyou.

cat55 profile image
cat55

Hi, I was taken to A and E with heart racing at 180, ecg gave diagnosis of AF. Sent on my merry way back to Germany where we were living, I was given Sotalol which made me feel so out of it, saw my GP over there and a cardiologist and it was decided I stopped Sotalol gradually. I didn't have another episode for over 3 years, and over the last 15 years have been very lucky in that I don't have many episodes. Last one was last October. I have a pill in pocket for this. I don't know if this will get worse as I get older, I am 61 now. I do get spells when I have lots of ectopic beats, largely stress induced I believe. You are right to get more advice and input from medics. Alcohol for a few years before diagnosis made my heart race, so I realise alcohol is not worth it. Read all you can about it from the AF website and as many advise on here ask for and keep any correspondence, test results etc. I wish you well, let us know how you get on. Everyone on here is so helpful. Best wishes Kath

YannyD profile image
YannyD in reply to cat55

Yes Kath, mine was all over 186 at one point! Such a shocker!! I'm scared to dare to stop taking them. I don't know what to do. I do need to see a specialist for sure. Thankyou.

Jomama profile image
Jomama

I was diagnosed last year with Paroxysmal afib. Heart was racing like crazy and went to ER and was caught on EKG. It's pretty definitive. I was 59 when diagnosed and pretty healthy and fit. It's really weird when this comes out of left field like that. Was put on blood thinner and calcium channel blocker for rate (I can't take beta blockers) and it got more frequent as the months went by. Just had an ablation because I didn't want to be on anti-arrhythmic all my life. Anyway, if I were you I'd get myself to an Electrophysiologist asap. That is the kind of doctor who specializes in heart arrhythmias. You can develop a plan to control your afib through meds or surgery. Good luck!

Deadwoodmike profile image
Deadwoodmike

Hi there. My Afib began after nights of drinking alcohol. I asked the doctor why it only happens after drinking, not during. He said Afib is aggravated by alcohol, and it happens when your body is detoxing. So for me, alcohol always made it worse.

YannyD profile image
YannyD in reply to Deadwoodmike

Makes sense. I don't know if its my imagination or coincidence too, but I don't drink coffee now, but had one recently, I didn't sleep all night? Then yesterday I had 2 ordinary teas, not my usual decaf tea, and again ,I was awake all night. Have you had this?

I am the same coffee is a no no

De caff tea only and stopped sweeteners as they were triggering AF and the worst culprit was Cadburys Chocolate it makes my heart race and etopics are scary

My meds are 20mg of bisoporol and Ramipril 5mg also pacemaker insitu which kicks in if rate falls below 60

Good luck

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