Slow Sinus Node Recovery?

[Tricia239]

I wonder if anyone can help reassure me as my AF episode seem to be getting more frequent again and on the last few occasions at the point that I revert to NSR I have a terrible sensation and genuinely think I am going to die and I am so scared. I am windowed and live alone. It feels as if my head is in a vice, there is no ache or pain, just pressure and noises, like rushing water. Instinctively I throw my head between my legs. I don't know how long it lasts, only seconds probably but it seems to go on for ages and yesterday it seemed longer than ever. I'm unable to do anything, I couldn't even phone for help. I have now made an urgent appointment to see my EP but that's days away and I'm now so anxious all the time. I'm frightened about going into AF more than ever because I'm so frightened about when I revert back (which seems such a contradiction). I take Apixaban so I am protected in that way. It happened at the end of November as I was returning from Spain and I lost consciousness on the coach taking me to the airport - that is the only occasion when I've lost consciousness. I take Sotolol 80mg twice daily. On reading through previous correspondence from my Cardiologist, I had told him about one occasion when this happened and he said I might be suffering from Slow Sinus Node Recovery. I guess that is probably what it is but I have no idea of the implications of that, or what I can do about it. I would be grateful of any reassurance - please don't scare me anymore than I already am. Thank you, Tricia

[Dawsonmackay]

Not to worry you, but you may just want to "google" Slow Sinus Node Recovery. The symptoms do equate to your descriptions too. I checked a couple of sites - this one very similar to the others:

uptodate.com/contents/sinus...

[Tricia239 in reply to Dawsonmackay]

Hi, thanks for your reply. I don’t seem able to access the link you sent. I will keep trying. Tricia

[Dawsonmackay in reply to Tricia239]

Don’t worry about finding that site. Just google your heading.

[BG2017]

Hi Tricia, I was diagnosed with Sick Sinus Syndrome and AF. Some of my experiences were very similar to yours. Once the AF (and associated rogue electrical signals in the heart) ceased, then I would experience a long pause before the sinus node kicked in ( sometimes 6 seconds and as long as 10 seconds). I too would have to lower my head to stop the dizziness etc..

I wasn’t allowed to drive for a year. After my first ablation was unsuccessful, I was fitted with a pacemaker, which then improved these episodes and meant I could drive.

I can sympathise with your anxiety but would imagine this exacerbates these symptoms, so would encourage you to try some slow deep breathing and mindfulness techniques. Hopefully when you see your EP you will have more definitive answers.

In the meantime I wish you well, and hope you can sit any AF episodes out in a safe place so you don’t feel worried about their conclusion. Please go to your GP or A and E if you really think they may end in injury (due to loss of consciousness). Best wishes Becky

[Tricia239 in reply to BG2017]

Thank you so much for your reply. You mention two things I’ve been wondering about, driving and a pacemaker. I just don’t know what I would do if I couldn’t drive. A pacemaker would certainly be reassuring. I live in Wales and the A& E at my local hospital is horrendous but I could try to get to Cardiff.thanks again. Tricia

[BG2017 in reply to Tricia239]

I also live in Wales, very rurally, and not driving was definitely a challenge with children and work commitments! Good luck at getting to the bottom of things with your EP.; and if the result is a pacemaker then hopefully that will be a straight forward solution for you.

[bantam12 in reply to Tricia239]

I get pre syncope with my AF and ectopics and will be having a pacemaker fitted soon, I'm looking forward to a normal life afterwards where I don't have to worry about collapsing while I'm out walking the dogs or shopping, if one is offered to you I would say go for it 😊

[Tricia239 in reply to bantam12]

Hello, It seems these 'episodes' are more common than I realised and I'm sure a pacemaker is the answer - good luck with yours.

Thank you for taking the time to respond to my query. Tricia

[Hidden]

I have a friend who also lives on her own, & like, you was very scared with the syncope/pre-syncope symptoms you describe.

Her’s was due to tachy/Brady & she has been well since having a pacemaker inserted.

Incidentally, she was told she mustn’t drive in between diagnosis and getting her pacemaker (& I believe for a while afterwards).

I do hope your symptoms are addressed & treated soon.

All the best

Pat x

[Tricia239]

Thank you, you have confirmed my thoughts. Hopefully the solution will be simple and speedy asI am so scared.

Thanks again. Tricia

[Clarrie]

Hi Tricia

I take 80mg of Sotalol twice a day but still get frequent attacks of AF. When I revert to sinus mode a big black mist comes over me and I feel very dizzy and as if I am going to pass out but don't. If not sitting down I have to grab something to hold onto so that I don't fall over. My HR drops into the low 40's and blood pressure low when first go back into NSR.

[Tricia239 in reply to Clarrie]

Yes, that sounds all too familiar - scary isn't it?! I think perhaps, like me you need to get some up-to-date advice from your Cardiologist. It's reassuring to know I'm not the only one, but sadly, small comfort. Take care and that you for taking the trouble to reply. Tricia

[Clarrie in reply to Tricia239]

Although I have had AF for about 4 years now it is still scary and I always get these symptoms when reverting to NSR but my cardiologist does not seem concerned about it. Please let me know what your cardiologist says. Take care, Clarrie

[Tricia239 in reply to Clarrie]

I've had AF just a little longer than you and have had an ablation which worked well until in 2017 I had to have a GA for a mastectomy and was in AF when I came round from that and have had it intermittently since then. I mentioned to my Cardiologist about the symptoms when I came out of AF but like yours he didn't seem to think much of it and just said, it happens to some people. But at that time it had only happened on the one occasion but now it seems every time. Yes, I'll let you know is said on Tuesday - I'm seeing a different Cardiologist this time. Tricia

[jrd210]

Tricia, I developed SSS +AF 30 + years ago and had a pacemaker inserted very soon after the first attack (days). It sounds like you urgently need one. We live in BC Canada and given your description I think you would have been referred for an urgent pacemaker insertion. There may be a 3 month no driving afterwards. That varies from place to place. Good luck and hope it is done soon.

[cuore in reply to jrd210]

Yes. B.C. is very big in slapping in pacemakers. My friend, after his first ablation, was told about a pacemaker. He went out of the country, got a second ablation, and now is in sinus rhythm. I know so many people in B.C. who have pacemakers, but I find it hard to find someone who has had an ablation.

[bantam12 in reply to jrd210]

In UK it's only 1 week of no driving after pacemaker insertion.

[Tricia239]

Thank you. I've now arranged to see a Cardiologist privately and have an appointment on Tuesday, which isn't long at all but right here and now it seems an eternity! Thanks again. Tricia

[123Abc123]

I have had a few sessions of feeling as though I am going to pass out. The first time I was at a show and the St John’s ambulance team helped me. The main thing they did was make me drink lots of water. The second time it happened I was in church so I asked for water and after sitting for a while I was ok. Of course, we made not have the same problem but try keeping more hydrated. Have you got one of those alarm buttons to wear around your neck? That might give you more confidence.

[Tricia239]

Hello, I think you are right about keeping hydrated and I do try but confess I'm not very good at it! I don't have an alarm button but I keep thinking about something along those lines, they are good if you live alone.

Tricia

[Ridley60 in reply to Tricia239]

Hi Tricia,

I had a 2nd ablation in the summer. About 3 weeks later I kept getting light headed and fainted a couple of times.

EP thought it was just heart settling down and put me on flec and Bisoprolol this seemed to sort thing but could ween myself off them.

To cut a long story short. At 4 months I had a 48hr holter monitor and was contacted promptly telling me I needed a PM as showed 8-10 sec gaps in heart beat.

I was suffering with Level 2 heart block. Sinus Ok but AV node not relaying signal on.

Had dual lead PM fitted in Nov a few days off work no driving for a week and after only 7 weeks hardly notice it’s there.

I suggest you get a 48 monitor done and analysed. If you need a PM don’t worry it’s no big shakes.

I’m a Taffy but live near Reading now so can’t make any recommendations unless your prepared to travel.

[bantam12]

My husband was told a week after his pm and my Cardio and EP have also said 1 week for me so I'm happy with their advice 😊

[Tricia239]

Thanks for the reassurance. I am prepared to travel the difficulty is that once in Wales you can't choose where you are treated unless you go privately. I'm not sure it was a wise move!

[bantam12 in reply to Tricia239]

I know a really nice EP in Bristol, he does NHS at the BHI and private at Spire, let me know if you want his name.

[Tricia239]

Thanks, I would like to know his name, however Ed Duncan did my ablation at BRI and on Tuesday I'm see Jonathan Pitts Crick at The Spire, Bristol. But it's always good to have recommendations. Thanks Tricia