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[Suze43]

Anyone else had symptoms progress from manageable to very, very frightening?

Had my first episode of AF in 2010 but because it was so infrequent, I didn’t get a proper diagnosis of PAF until several years later and that was only because I bought my own Kardia monitor. I was prescribed apixaban but I refused beta blockers because I felt I was at the very mild end of the spectrum and was usually able to restore sinus rhythm with meditation and breathing exercises. I never had any really worrying symptoms, just the ‘Jumping beans in the chest’ sensation. I also had flecainide as a last resort pill in the pocket but it was rarely used.

Apart from a few trips to walk in centres and A&E (when things had usually reverted to sinus rhythm before I was seen!) my first serious event happened in September 2020 when tachycardia and AF set in and wouldn’t budge. From A&E I was admitted and monitored overnight and discharged with a prescription of 5mg bisoprolol.

Although the bisoprolol seemed to be controlling rate & rhythm I was very unhappy with the side effects – too spaced out to drive, low level headache, low mood, fatigue, lack of energy, joint and muscle pain, significant weight gain. The dose was reduced to 2.5 then to 1.25 but some symptoms persisted.

Yesterday, Wednesday 5 May at 2pm – my pulse rate became very fast (over 200bpm) and I had accompanying AF. I was weak, wobbly and VERY dizzy and thought I was going to pass out. The GP surgery advised me to call an ambulance: the wait was really frightening and I think I tipped into a panic attack. The weakness and extreme dizziness were symptoms I have never had before so I naturally assumed things were getting much worse. The paramedics suggested taking a flecainide tablet and this seemed to help me calm down but did not reduce the heart rate or stabilise the rhythm. I was taken to A&E and monitored for a while but needed 5mg of bisoprolol to get the rate & rhythm under control. This dosage lowered my blood pressure too much and I then needed a couple of drip bags to tackle that. By around 9 pm they were satisfied that sinus rhythm was stable and rate was below 100bpm so I was discharged. I am still feeling very tired, headachey and spaced out today.

Really worried and anxious about this recurring.

[lettingoffsteam]

That sounds very frightening for you.I would head over to the AF association page for more advice.I have some of the early symptoms you describe but on that page you'll find loads of people who will really know what you've been through.

[Suze43 in reply to lettingoffsteam]

Thank you for wading through my rather long post and taking the time to reply. What a lot of us there are with these rate and rhythm irregularities & so reassuring to learn of the experiences of others. I hope your symptoms remain under control.

[lettingoffsteam in reply to Suze43]

Thanks and I hope you get sorted out too.

[Sheamah]

It is scary and frightening. Glad you shared your experience. Make sure you see your GP or a Specialist that can help you and get this investigated until you are satisfied that you have the answers. 🙏

[Suze43 in reply to Sheamah]

Thank you. I've had lots of investigations since my initial diagnosis and there are no underlying heart conditions and my blood pressure is normally on the low side (which is why I struggle with bisoprolol). It is just an electrical fault that cannot be explained but I am very alarmed at how much worse my symptoms were. Stable now but still feeling very groggy. Appreciate your support.

[Sheamah in reply to Suze43]

I was given this medication initially and refused after side affects I decided I needed to be honest with myself about my needs and concerns.

[Suze43 in reply to Sheamah]

I am just desperate to get off the bisoprolol but the latest incident was so scary I don't feel confident about stopping it now. How have you been without it?Following various leads from this forum I am currently researching both the impact of lack of oestrogen and the role of the vegus nerve in triggering AF as I think they may both be relevant to me. So glad to have access to this wealth of information and the experiences of others.

[Brian1974]

Hi Suze43I can only comment on the Apixaban,I also take lots of other medication to control my heart beat and fluid swelling etc.I think after taking warfarin for a while that they both have different side affects just seems that the only difference is you don't have to go every week to get blood count checked.But it seems that I have not been checked for longer periods (think it may be the backlog of this covid and the Gp's having to have phone consultations)I also think that I have had to phone my surgery for something and then a couple of days or even the next day they call you to come in!but my situation is a bit different I had to change doctor's after heart failure was not diagnosed sooner that it was a stand in Go on the fourth appointment after antibiotics steroids for what was diagnosed a a chest infection,so to You're question I would rather be taking one or the other if you read about it you can find out the difference all I can say again is with Apixaban you don't have to go to the warfarin clinic so one extreme to the other but think it is down to the NHS being under pressure.stoll get all the tests and scans at the golden jubilee that I cannot praise enough for saving my life twice and hairmyers hospital where I was admitted at first they done what they could to the point they had to send me the transplant ward at the jubilee so think the dizzy spells are down to you're blood pressure,I had to be checked as mine changed significantly from when I was lying down to when I had to get up mainly to get to the toilet that I got to falling down the stairs to go and get it checked again, don't know if this helps answer you're question but stay safe and hope you are doing better.

[Suze43 in reply to Brian1974]

Thanks for your reply Brian, I think you're right that blood pressure changes were contributing to the dizziness. I'm OK with the apixaban (certainly preferable to warfarin) but find the bisoprolol difficult because it pushes down my blood pressure. It seems that most of the medications for AF also lower blood pressure but as mine has always been on the low side it makes me feel too spaced out. Since starting bisoprolol I feel like I am sedated all the time.

[Peony4575]

What a really horrible and frightening experience for you. Not surprised you are dreading a repeat . Not experienced enough to offer any words of wisdom but recommend The Afib Cure book to ensure you have done all the lifestyle things you can

[Suze43 in reply to Peony4575]

Hi Peony, the book you recommended is very informative. It seems the Americans are way ahead of us on this. The book has clarified that I don't have any of the classic causes for AFib so my mission to find out what is causing it continues and I really hope II can get off the beta blockers.Thanks for your help, it's great to be part of such a supportive forum.

[Suze43]

Thanks for this advice Peony, I have not come across this book before so I will follow that up.