Hello

[lulabell58]

Hello!

Had PAF a while..it started about a year after I'd had an ablation for SVT . Had PAF for 18 years..just took Flecaneide. Recently had Stroke ..Drs think I had AF in my sleep..now considering another ablation. Scared !

[BobD Volunteer]

Sorry to hear about the stroke and no doubt you are now on anticoagulant. Shame it wasn't started earlier but then the link with AF and stroke wasn't understood till about 9 years ago.!

Ablation isn't the evil thing you think and many people are grateful for the chance to live a fairly normal life again. Please go to AF Association main website and read all you can. It will help your nerves and maybe assist in guiding you. Ask here and we will try to help.

Bob

[Rellim296]

Hello lulabell and welcome! It sounds like things have drifted a while for you.

Perhaps you have had or are going to have some investigations, like an ECG/EKG monitor for 24 or 48 hours - longer perhaps - and an echocardiogram.

What about anticoagulation in view of your stoke?

You'll see we have lots of discussions about anticoagulation on the forum and about ablation too, with decisions to go for it and not to go for it.

[jeanjeannie50]

Good morning Lulabell and welcome to our forum. I'm sorry to hear about your stroke. Did you recover totally afterwards and were you taking an anticoagulant at the time or just your Flecainide?

Jean

[Hidden]

Hi; that sounds like a TIA , so as the others have written, you need to have an anticoagulant. A head CT scan could be a good idea to discuss with your GP. Whilst TIAs can be a precursor to a stroke, I know someone who had a TIA in their sleep many years ago and haven't had a reoccurance.

Can I take this opportunity to say that a stroke (not a TIA) may not have any of the symptoms such as a dropped face, inability to raise an arm etc. When I had a stroke it was losing my sight on one side and, the paramedic noticing that my ability to answer was getting slower that changed it to a "blue light run". If there is any doubt, ring 999.

[lulabell58]

Hi

Thank you for your comments.I had a 5cm clot on my right side..discovered about 4 weeks ago..which has affected the peripheral vision on my left side. I'm on Rivaoxiban now..previously was on Apixaban.

I started getting horrendous headaches. Gp thought it was nerves in my neck. One morning few days later..threw duvet over bed and lost my sight for about 20 mins. Back to Gp again..sent me to hospital. They did blood tests etc..said all ok..it's been a nerve in your neck. I said I never get headaches something isn't right..I'd like a head scan! They did the head scan and discovered the clot. They think I had an AF in my sleep.

I've now got a heart monitor..if that picks nothing up I'm to have a loop recorder fitted.

[PeterWh in reply to lulabell58]

Sorry to hear that.

Are you sure it was a 5cm clot because that is 2 inches.

[rothwell in reply to lulabell58]

So clearly Apixaban doesn't work in the prevention of blood clots.

[PeterWh in reply to rothwell]

Well very rarely whichever anticoagulant is being taken (yes even warfarin) the person can get a blood clot according to my GP.

[lulabell58 in reply to PeterWh]

I'm only relaying what happened.I've asked my Gp in the past.. if I'm taking anti coagulants etc does that mean that I'm unlikely to have a stroke ..and he replied 'no..not really'.

we have a friend who takes all his meds including anti coagulants religiously..and he's had a few strokes.

I think that GP's opinions vary. .my main concern now is to get better and prevent another one..the aftermath of the stroke leaves you scared in case there is another one.

[PeterWh in reply to lulabell58]

Yes I can imagine how you feel. Unfortunately there is no answer except to continue taking an anticoagulant because if you or your friend are one of the very very few who have one due to a clot whilst on Anticoagulation then I would have thought that the chances of having one if not taking Anticoagulation are very much higher indeed.

If I were you I would ask to be referred to an Anticoagulation specialist.

[lulabell58 in reply to PeterWh]

I'll speak to my Gp and Cardiologist about it. .I'm seeing everyone at the moment.

Thank you

[Gracey23 in reply to lulabell58]

Sorry to hear this. This is very disheartening to be on anticoagulant and get a blood clot. Hope you get sorted out real soon

[lulabell58 in reply to Gracey23]

Don't let my experience worry you..I was on Warfarin for a while and that never suited me at all..my INR levels were through the roof.. A cardiologist suggested I try Apixoban..and my Gp was totally against it..her argument was that warfarin was monitored..but the newer anticoagulants weren't.

This argument bounced back to the consultant who said if he personally needed an anticoagulant he would take either of the new ones without hesitation. I believe they are both expensive too..so that may have been a factor.

I was reluctantly put onto Apixoban..but when I started getting the bad headaches..I was told that Apixoban might be the culprit. I stopped them for a few days and took asprin.

The head scan I had showed the clot was over a week old..so it's hard to say whether an anticoagulant was to blame.

I'm just really grateful I have no physical problems..I've been so lucky !

[Gracey23 in reply to lulabell58]

Did your Dr give you an explanation to how this clot formed? Was there a time in between that you weren't on an anticoagulant ?

[lulabell58]

Yes..I asked him how big the clot was..and he measured it whilst I was there. Why..does that sound wrong ?