Bicuspid Valve - Heart palpatations

[Sian1234]

Hi, I was diagnosed with a Bicuspid valve approx 3 years ago, due to finding it continuingly more difficult to run / walk up hills etc. My Mum died of a heart attack at 42 years, so assuming I inherited from her... I am 49, and have been stable with my situation since diagnosis, but recently have noticed some really quite aggressive heart palpatations, they don't last more than a few seconds, and can repeat regularly. They always used to be just subtle flutters. I am not sure if it is associated to the bicuspid valve progression of stenosis / regurgitation or if it is just the menopause.... Has anyone noticed worsening palpitations as part of the progression with bicuspid valve complications?

(I'm new here - first time of posting / reading all about your cases, so I really appreciate your feedback...)

Thanks.

[Holywellbay]

I know how you feel I had a new aortic valve four years ago and I was very nervous and worried about having the operation. I was fine with the operation and recovery went well. I exercise and swim feel I have a new lease of life. Hope everything goes well for you.

[Sian1234 in reply to Holywellbay]

Thanks so much for replying, I am new to this and wasn't sure whether to message or not... It is so reassuring to hear about the new lease of life!! I am struggling with not being able to exercise much, and it feels like a vicious circle as I need to exercise to keep me healthy / keep my head positive...

[Flowerfanatic]

Hi Sian1234Going by my experience with a bicuspid aortic valve I would say yes, the heart palpitations are linked but unless you have severe stenosis (narrowing) of the valve you won’t yet need an operation. Do you have annual echocardiograms yet? I am in my early 60s and had my bicuspid aortic valve replaced a few months ago.,, during my 50s my stenosis went from mild to moderate and then at 60 to severe which was when they said I will need at operation. I would say go to your GP and explain the palpitations (they may say “nothing to worry about” at this stage) however I would push for a referral with a cardiologist and an echocardiogram to put your mind at rest. It may be many years before you need any intervention but always good to know. Good luck.

All best wishes

Sarah

[Sian1234 in reply to Flowerfanatic]

Thanks for the reply Sarah. I've made an appointment to discuss with the GP and get an Echo. I'm due a review with the cardiologist but due to COVID I'm still waiting. Hopefully the GP can push it along for me. Thanks so much for taking time to reply, I'm new to this and so pleased I got the courage to post, it is so reassuring to know you are all there to answer questions as I progress... 👍

[Cat04]

My bicuspid valve was diagnosed in 2007 and my AF finally was diagnosed in 2013. I had an ablation in 2018 to deal with the AF and have regular surveillance for the stenosis which now has progressed from mild to moderate/severe. I would suggest you have a word with your GP to get a heart monitor organised and a repeat echo to see the current state of your heart and valve.

[Sian1234 in reply to Cat04]

Thank you for your reply and advice, I will make an appointment with the GP and get it checked out. I'm due a follow up, but with COVID I could be waiting a while, so I'll get the ball rolling. I'm new to all this, do you mind me asking what AF means? Thanks.

[Cat04 in reply to Sian1234]

Sorry - AF is atrial fibrillation, the hearts electrical system throwing it out of rhythm. As I wrote the first reply to you I was thinking that to see/speak to a gp is not that easy nowadays. I recently requested an appointment on econsult and had a call back from the doctor after 1 hour 40mins. He then called me in to listen to my heart and adjusted my meds. The system does work, sometimes!Also don't let them get away with blaming the menopause, not without eliminating everything else!

Best wishes.

[Sian1234 in reply to Cat04]

Ah right, ok thanks!

Yep, I'll keep pushing with the doctors. If I don't get anywhere I call the Cardio's secretary and ask for an appointment.

You're right, everything gets blamed on the menopause... which I could do without but at least I share that experience with my friends... the heart challenge is daunting and scary. I am so pleased I found you guys... x

[Mikedabike]

Hello there, I felt that I had to reply after my own experiences. I was 61 before I was diagnosed with a bicuspid aortic valve. I had an AVR in December 2019. Prior to the operation Within 6 months of the diagnosis I went from being extremely fit, to being out of breath just tying my shoes. As my deterioration was quite rapid, I felt that I instinctively knew that things were not right. I even paid out over £2,000 for a private cardiologist consultation. He simply told me that my stenosis caused by the bicuspid valve was moderate and that I just needed regular checks. I then experienced a very intense heart palpitation, which I had never suffered from before. As a result I went straight to A & E. I was given the usual initial checks and told everything was fine. A few weeks later I suffered an even more severe and prolonged palpation. The next morning I went straight to my local A & E. I was again given the standard tests and told that everything looked fine. At least they arranged for me to return the next day for a CT scan. The next day I was in a room of generally extremely ill or frail looking people. I was simply put back at the queue and told to return after lunch. My wife and I even went for a pub lunch. Fast forward to later that afternoon. I walk from one end of the hospital to the other for my CT scan. Once I had the scan I was placed in a wheelchair and told not to move. The end result, I was placed on a ward that night. Remained in the hospital for two weeks and then had my AVR. Of interest, the consultant who I had seen privately even came up to me and apologised for his incorrect diagnosis (what a shame he didn’t offer to refund my money). In fairness at least it was very decent of him to admit his mistake and apologise. Of note, other than the two occasions I had never suffered from any kind of palpitations before. Since my AVR I have never suffered from one since. I guess the point I am trying to make is if you don’t think things are quite right, from my own experience you have to keep pushing, either with your GP, your consultant (via their secretary), or even the A & E departments. Good luck with your progress.

[Sian1234]

Cripes Mike, sounds scary, I'm so pleased it worked out well for you and you got it sorted. I agree, I need to keep pushing. The fact I have posted here after 3 years of diagnosis, I think I am realising that things are progressing... And I keep thinking back to my cardiologists face in my review last year, I think he was in two minds what to do / whether to propose something then, but in the midst of COVID and only 5 of his usual ITU beds available (his words) I think he thought against it, but I keep thinking back to the look on his face and the uncertainty he felt.... I should have pushed then. He has been great taking me from private back to NHS when my healthcare said they won't cover it any longer (genetic). But I think they're under such pressure... He said he'd see me again in 9 months, and that should have been the end of the summer so I will keep pushing. ECG booked with GP Friday so lets hope that pushes things along. And you're right, anything more aggressive on the palpitations and it'll be off to A&E. The thing is although re-occurring (if I have 1 I'll have loads in 1 day) they don't last long currently so by the time I get there I'd feel a fraud.... Thanks SO much for posting, I'm not usually one to join these kinds of forums, but you guys are amazing, and this the best thing I have done since diagnosis, so thank you for being so honest and supportive!!

[Cat04]

This why you need a 5 day or 7 day heart monitor because an ecg never manages to catch the intermittent palpitations. Keep pushing your gp or ring the cardiologists secretary to enquire when you will be seen as your appointment is overdue.

[Sian1234]

Ah right, so it is normal for the palpitations to be intermittent, a monitor make sense. I am learning so much! ECG and docs appt Friday. Will keep you posted! 🙂

[Andywags]

Following this post so hope you get sorted. I’m 48 and get milder palpitations at night and was diagnosed with bicuspid valve 6 months ago but told was fine for now.

[Sian1234]

Hello all, a quick update. The consultant's secretary has advised that I am being booked for a 7 day heart monitor, just waiting for the appointment to come through, so progress is being made...🙂

[Pheasant1234]

Hi. I have recently been diagnosed with bicuspid aortic valve. I had a few instances of rapid irregular heart beat that lasted many minutes. I was diagnosed bp meds and also bisoprolol. This has stopped the irregular heart beats and lowered my bp. I feel much better. I would discuss with your doctor, bisoprolol is a wonder tablet for abnormal irregular heartbeat. Also it’s important with BAV to keep bp low.