Suggestions welcome!

[Jude07]

Hi all, its been a while since I posted. I had my 4th ablation in July, and following it had some complications with bradycardia. After medication adjustments, things evened out although I still felt something wasnt right.

Fast forward to now and for the past 2 months Ive been struggling again with bradycardia (rates mid 30s to 50) but also having breakthrough episodes of high rates upon minimal exertion. Symptoms varying from chest pain/discomfort, palpitations blackouts, breathless on exertion, waves of nausea and extreme fatigue. In general I feel very very lousy. I feel like Im fighting to be seen again and to be believed, and even my GP has agreed that I cant continue feeling like this. For the past month I have tried being in touch with my EP and even my GP has wrote to him, but as yet we still have no response. Im genuinely at my wits end and dont know what to do next except for considering going through my EPs private clinic just to see him or get him to refer me to london or elsewhere..does anyone have any suggestions? Thanks!

[Buffafly]

What about a cardiologist? Because that sounds (usual caveats) like sick sinus syndrome. I have been told by my cardiologist that I can't have any stronger meds for fast AF because then my heart goes too slow and pauses. Alternative is pacemaker but luckily I seldom have episodes now.

[Jude07 in reply to Buffafly]

Thanks for your reply. I had been under a cardiologist at one point but he passed me to the EP as he wasnt as clued in on my case. I've heard of sick sinus syndrome and it does sound like it makes sense. Id say Im similar to you then, Im on medication to reduce the fast arrhythmias but theyre making me go slow so cant be increased even though Im still having breakthroughs. Im glad to hear yours have reduced a lot now! That is encouraging to hear.

[Buffafly in reply to Jude07]

I was lucky my first and only ablation was fairly successful, it must be terribly upsetting feeling so bad after going through four 😖

[Finvola]

Good grief that’s not what anyone needs. I would be pushing my GP for an urgent referral to a different cardiologist. To my layman’s mind, it sounds like your heart needs help - perhaps a pacemaker??

Don’t worry about not being believed - kick up a fuss with your GP (who already agrees you cannot continue to suffer).

You might find it helpful to read Michelle’s post ilovecoffee123 further down the page regarding her Dad’s situation.

Please do not put up with being brushed off and let us know how you get on. Best wishes.

[Jude07 in reply to Finvola]

I know,I believe I might have to try elsewhere. My EP had already saught advice and held a mdt meeting with the other cardiologists over here in June, and at that time I was turned down for the pace and ablate, but things have changed since then especially with bradycardia. So it does give me thought then that it might be a possibility again, as you said my heart might need that help to allow the medication to target fast rate?

Thank you, Ill read through her posts now! Ill keep pushing them as I cant keep going like this. Ill post again when I hear more or made a decision! Appreciate your advice and reply! Thanks.

[Hidden]

Hi Jude07

If there is an issue about being believed then a Kardia device may be worth considering.

Do you think it was more a case of your EP not wanting to go the pace and ablate route just yet at 23, rather than you being turned down?

When I spoke to my GP about long waiting lists for appointments, he suggested I should go privately for a consultation to get round this. Sad reality I’m afraid. You can revert to the NHS afterwards. I felt it was £150 well spent.

Has the arrhythmia nurse been helpful? Are you in touch with a local support group?

Given the dreadful year you have had, how about asking your GP to speak directly to the EP, not easy for you, but maybe take your parents for moral support. Years ago it would have been standard practice for a GP to pick up the telephone.

Good luck

[Jude07 in reply to Hidden]

Hi Oyster,

I just recently bought the kardia and I have ECGs confirming bradycardia, tachycardia, pvcs and possible a-fib episodes. I emailed a few of the tachycardia ones to my EPs secretary a few weeks ago but no response to that either.

Yes, youre definitely right about the pace and ablate, one of the big reasons they chose not to go that route was they felt it might lead to more complications especially at a younger age than the norm. But things have changed since then and Im not sure what to think.

Id tend to agree that it would be money well spent, especially if it means moving forward in some way. We dont have any arrhythmia nurses here in NI unfortunately. So its a bit of a battle, and I dont want to be a burden at A&E, if they dont know what to do to help.

My GP has tried calling my EPs secretary but she hadmt heard a response either, as well as email and posted letter to him a few weeks ago. Im going to try them both tomorrow again I think, and possibly go ahead with private clinic like you suggest. My mum has attended appointments with me before so Ill definitely have her come privately with me. Thanks again.

[Hidden]

Hello again

I think you should email the ECG strips showing the bradycardias. Your EP already knows about your AT. A run at 36 bpm will likely get his attention.

You should confirm with his secretary that they have been received.

PALS may be able to help if you’re still not getting anywhere.

What medications are you taking?

[Jude07 in reply to Hidden]

Ill email through those ecgs to his secretary today. Thanks. It was running between 34 and 40 earlier on and hope I caught it.

Thanks very much. Im only on sotalol bd now as they had to stop the bisoprolol due to the first signs of brady in July. They cant stop the sotalol because Ill have the fast rates again. Not sure where to go next!

[radagast58]

Wouldn't normally recommend this but I think the circumstances plus the severity of your symptoms justify a 999 call. This is not normal post ablation. Make absolutely certain they understand that you are experiencing chest pain, fainting and severe shortness of breath on minimal exertion. Insist on seeing a senior cardiologist!! I hope you get this sorted.

[Finvola]

Jude - I see that you are in Northern Ireland too - I live on the north coast. The Royal has 4 EP’s I believe and they normally worked as a team led usually by Dr Lau - this may have changed in the last years though. I cannot understand why you are having no response to your requests for advice.

My EP is Dr Conor McCann at the Royal and I think the world of him.

I’m also sending you a private message, about this.

[Marney]

Hello jude07. Sounds like I went through 5 years ago. I passed out in the car park. Rushed to hospital. They said you are staying here till you get pacemaker. Never regretted it. I never go below 60 heart rate now. Since my 3rd ablation 15 months ago, I am great. However still on some meds, but have my life back.....if in the future years I need a pace and ablate, it will be just a 15 min snip they tell me. Although the way I feel now , I may never need it... I don,t know about UK but in Canada , I push for my HEALTH.

Marney ( CANADA)