Worried lady

[Redman54]

Hi I have just joined after fainting at home cut my head open have now found out I have long qt syndrome and have had a pacemaker fitted my heart stopped beating for six seconds a day befor pacemaker is there anyone can give me advice bit worried about all this thank you for listening

[BobD Volunteer]

Sorry to say that although there are some people with AF who have pacemakers it is not strong point from the advice point of view here. I'm not sure what you are worried about either since you now have a pacemaker which will stop your heart from stopping as it did before.

I do think that you need to discuss any fears or worries with the medical team who have been treating you as they have far more information about your condition. Why not contact them by phone and explain what is worrying you.

If there is any specific AF related question I'm sure we can help.

[dedeottie]

There used to someone who popped in and out of the forum who also had long Q.T. syndrome and had a pacemaker that was also a defibrillator. Im sorry but I cant remember his name. Maybe he will see your post . It would be good for you to swop notes . It must be very scarey but as with A.F. it will hopefully become less so with time and knowledge. I wish you all the best x

[Redman54 in reply to dedeottie]

Ty for help

[jeanjeannie50]

Hi Redman54 - If you look at the top right hand side of this page you will see 'Search AF Association'. Type over this and put in 'long QT syndrome'. This should then bring up any posts on this forum relating to that subject. You could also search for 'pacemaker' should you want to. To send someone on here a private message click on their icon (picture).

Also I hope someone who has the same as you will see your post here and offer some support. Sorry I can't help anymore than that.

Jean

[Redman54 in reply to jeanjeannie50]

Ty

[cali111]

Although I don`t have this syndrome my friend who is now 80 years old does. She has had a pacemaker for years and is quite happy with it. They do their job effectively.

Hope this helps to reassure you.

[Redman54 in reply to cali111]

Ty it does make me feel safer

[Mazza23]

Hi I have lqts have to be very careful go what drugs I take as I am sure you do there is a site called credible meds that is very good also a face book group for lqts that is great

[pip_pip]

You might also try the Arrhythmia Alliance on this site. They cover all arrythmias .

Phil

[BStanding56]

I had Symtomatic Af, then had two Ablations which only worked for a short time, I started collapsing without warning, I was given a pacemaker, in my view best thing since sliced bread, I had a life again, took me month to feel really better and started walking further each day. I have had my pacemaker now about 3 years, only had one episode of Af since

[realdon]

I hope my story will give you some reassurance. My AF was diagnosed in 2012 because I had been having periods of dizziness culminating in a couple of faints. The seven day halter did not reveal anything, but a 7 day halter revealed that when I was coming out of an episode of AF, my heart stopped beating for between 3 and 10 seconds, very similar to you. I was called in at short notice for a pacemaker to be fitted in January 2013, since when I have not had any faints or dizziness. It has not cured the AF, and I still take flecainide, bisoprolol, and rivaroxaban, but it has given me confidence and enabled me to satisfy the DVLA that I can continue to drive.

[ultramarine]

Redman 54. It seems like you have a few issues to look at one is the feinting and cutting open your head (maybe loss of too much blood if you are on blood thinners) that's causing you to worry plus the long QT. Apparently I have a long Qt on and off not all the time, the longest on record is 3.08secs which I recorded with the Alivecor App. Nobody seemed to show much concern in Emergency, although they were calling it out a lot to themselves. I did some research and there could be an issue if you get 3 long QTs in a row....(pauses that is) but you have a pacemaker I thought this would revert your heart back to normal I could be wrong on that. Perhaps you need to find out, what a pacemaker does to start with, then work out why you are feinting (either dehydration or infection or something else) and finally research the dangers of a long QT, with or without a pacemaker.

you are right to be concerned but you need to clarify which point you are concerned about.

[opal11uk]

Yes, same happened to me but thankfully I didn't actually pass out but had 'whiteouts', horrendous, and my heart too was going into long pauses before regaining rhythm so I had the pacemaker fitted and it has made a tremendous difference to my PAF former life, thank God to the man who invented them.