Wolff Parkinson White Syndrome - Anybody Out There?

[swiftie09]

Hi everyone! I'm looking to connect with people roughly my age that have had a diagnosis of Wolff Parkinson White Syndrome. I got diagnosed around age 14 and I am now in my mid twenties. I live in the UK and I really want friends that get what I'm going through! Please feel free to message or comment on this if this is also what you have!

[Cee-Cee1]

Hi Swiftie, I'm sorry but I'm afraid I'm not very knowledgeable on Wolff Parkinson White Syndrome, my 'problem' is CAD - but just wanted to welcome you to the forum. I do hope you get some answers to any queries and meet some others with the same. Perhaps you could try a search for the topic on the bar above.

[swiftie09 in reply to Cee-Cee1]

Hiya! Thanks so much for your reply!

[BHF_Nurse_Jo BHF Nurse]

Hi there, have you looked at our One Beat Group for people aged 18-30? bhf.org.uk/informationsuppo....

[swiftie09 in reply to BHF_Nurse_Jo]

Hiya! I will have a look at this! Thanks

[july2020]

Hi Swiftie,

I know of this condition because my wife was diagnosed with it in her twenties, we are now in our sixties, by all accounts not something that is common. After her attacks got worse she was referred to a cardiologist in London who did an ablation of the path way and has had no more attacks since.

After the ablation the consultant told her that her condition was something even rarer Lown-Ganong-Levine syndrome.

Coincidentally I worked with someone shortly after the ablation who also had WPW and his was control with medication.

Hopefully you can find someone around your age you can relate to, but I am sure my wife would be happy to answer any questions you might have.

Take care

Mark

[swiftie09 in reply to july2020]

Hi Mark,

I'd love to hear from you and your wife! I've been diagnosed almost a decade now and I am managed by medication mostly but I do also suffer with a long QT occasionally. This makes me fairly anxious!!

Thanks,

Swiftie

[GlasgowGirl1968]

Hi there. I was also diagnosed with Wolfe Parkinsons White Syndrome. I only got diagnosed in my 30's . Im now 53 and only starting to have trouble with it now. Iv recently been to Liverpool's Broad Green hospital for an ablation, but this was unsuccessful , I could try again but Im a bit disheartened that it didnt work. Im on medication and Im now looking and doing other research as what will be my next step. Im seeing the surgeon in 3 months to see whats next. Do you get any symptoms, palpatations/syncope?. Iv been getting broad complex trachardia with syncope but beta blockers have been working ok to control these episodes. How have you been handling it?.

[swiftie09 in reply to GlasgowGirl1968]

Hiya! So I was diagnosed at 15 and they also tried an ablation for me back then but it was ultimately unsuccessful. So I know how it feels. It can be very disheartening and upsetting. I'm always here (via Chat) if you would like to talk more in-depth about this. I've been on medication (Flecainide and Midodrine) since and that seems to mostly control my episodes. I think with me, the Wolff Parkinson White isn't so much of an issue as much as the anxiety that knowing I have Wolff Parkinson White has on me. I think this anxiety causes me to have palpitations sometimes rather than the opposite way around. I suppose I handle it as best as I can. But I don't know many people that also have it so it's nice to have somebody to talk to. I'm now 24 and want to try an ablation again personally, just because I think it would really help my anxiety issues if the Wolff Parkinson White was (mostly) out of the picture. But I suppose it's not that simple. Please feel free to send me a message via the Chat function on here and I'd be happy to chat more.

[alm587 in reply to swiftie09]

Hello,

I’m 24 and have also been informed I’m likely to have WPW as they detected an abnormal rhythm on an ECG after I went into A&E with palpitations.

What tests do the cardiologists run to further investigate it if you don’t mind me asking? I’m anxious as the waiting time to see a cardiolgist is 15 weeks. Anymore advice you can give would be so much appreciated. Sorry to hear you are also going through this. As you say, it’s difficult to tell when it’s anxiety causing the palpitations , or if it’s the syndrome itself.

[september1990]

hi! i’m now 31 and i got diagnosed with WPW last May and had a successful ablation done the following month in April. although i now have IST (inappropriate sinus tachycardia) which i take a low dose beta blocker for. any questions feel free to reach out!

[alm587]

Hello, I’ve recently also been told I am likely to have WPW syndrome. My ECG pattern was abnormal and the doctor detected Wolff Parkinson White Syndrome.

Did you have any other heart defects alongside this problem, or just the WPW, and what treatment have you had please?

[alm587]

Hello,

What tests did the Cardiologist do to detect the WPW? I had an ECG scan at A&E following heart palpitations , they identified and highlighted a WPW pattern, I’m waiting to see a Cardiologist but the waiting time is 15 weeks. Have you got any advice in the meantime? Thanks