af news

in april2009 i woke to have a 160 beat irratic heartbeat,after 15 hours i decided to go to A and E and they did a cardioversion,and put me on 2.5 mg bisoprolol,ever since then ive been fine until last june when i got another episode,ever since then my doctor has been experimenting with combinations of blood thinning agents and beta blockers ,im getting various differant types of AF now ,the present one has left me without sleep for 2 nights.I get 10 good quiet pulses then 3 or 4 odd type pulses, and then a firmer heartbeat thats keep me awake then back to the quiet beats.its absolutely doing my head in.I just have to go onto sleeping tablets.

[Hidden]

In your position I would get a Kardia, print off some strips and ask your GP for a private referral to an electrophysiologist.

[Hidden in reply to Hidden]

I had my heart tested fully in june,not an ECG the other one with the picture on the screen,echo something or other.Thanks for the advice i have to do something pretty soon.

[CDreamer in reply to Hidden]

You meen an echocardiogram - it uses sound to build up a picture and is the least invasive test. It shows the heart structure - ECG shows the rate and rythm.

[CDreamer]

Surprisingly - I manage to sleep right through because AF makes me so tired.

I listen to audio books as white noise to my heart beat in my ear.

I use a Kardia to share with my doctor, that will confirm whether or not it is AF or ectopics or something else.

Beta blockers affect rate, not rythm so do get to see an EP.

[Hidden in reply to CDreamer]

thanks for the info,its good you can sleep through ,thats a real advantage,im a light sleeper but i might look into the audio book angle for the future(if i have one) ,i will be seeing the doctor monday hopefully,having new doctors every other week hasnt helped either.

[Hidden]

Charlie, you may not be aware, but apparently no one has ever died from AF and because you are taking anti-coagulates (blood thinners is a forbidden term!!) your risk of stroke from AF is significantly reduced, so be confident that you have a future. To put that into context, when I was first diagnosed, I was scared, frightened and very anxious and when I saw my GP around a month later, he said, "what's all the fuss about, your heart isn't going to stop". I replied saying "you may know that, but no one has bothered to tell me"! His face was a picture!!

CD is right about the echocardiogram, but it is surprising they didn't do an ECG because the two tests normally go hand in hand. If possible, obtain copies and follow oysters advice about seeing an EP as soon as possible. Unfortunately, this is unlikely to happen quickly under the NHS, but a private appointment is normally less than £300 and is money well spent.

Try and avoid sleeping tablets if at all possible. I tried alsorts of different things to help me sleep and at the time, making a "V" with pillows to try and keep me on my back and putting the clock radio on sleep with Classic FM worked reasonably well. You can even get apps that play all sorts of stuff designed to encourage sleep, but I know it will not be easy until you see some progress in getting the medical help you need....the very best of luck, John

[Hidden in reply to Hidden]

thanks for the info, I did have and ECG as well,and a holter 24 hour monitor.what I have now seems differant a normal heart rate and a sudden pulse making the heart pulse firmer, with a 2 to 3 sec gap when the change happens ,and after a few more odd pulses back to normal..its regularly irregular.with sleep i wake up and the conditions are gone,then they build up again .I use sleeping pills as the last resort knowing you can get certain sleep.7 pills lasted me 4 months.I cant lie there night after night for hours on end. Sometimes i wonder about all these wi fi radio networks all around us, are these upsetting the electrical activity of the heart? it wouldnt surprise me.

[Mickhall in reply to Hidden]

You say no one has died and if true it is good news but, when I ended up in hospital and AF was first diagnosed when I asked the consultant who was treating me what would happen if my treatment was unsuccessful he paused and said well you would end up with heart failure and shrugged his shoulders with a silly grin and moved down the ward. In my case I had a cardio version but it flipped back into AF after ten days and I am still waiting to find out what comes next. I was told by cardiac nurse another cardioversion may be unlikely due to damage to one of my hearts chambers, more likely the consultant will prescribe stronger drugs than beta blockers and bisproll (sorry about my spelling) which I am on. I just don’t understand why the medics don’t sit you down and talk you through the outcomes and treatments available for AF, its the not knowing which in my view gets you down. It is the main reason why we loose sleep.

[Hidden in reply to Mickhall]

Hi Mickhall, as you are probably aware we are not medically trained therefore we can only share our own personal experiences and, where appropriate, pass on information we have gleaned from support group meetings and other contact with medical professionals.

Clearly, if AF continues unchecked by either medication or procedures such as a CV or ablation, then the heart might enlarge and create other heart issues which are not helpful. In most cases, treatments are introduced before patients deteriorate that badly, but it beggars belief that a medical professional could be so flippant and dismissive.

Clearly, I cannot comment on your particular case, but if I were you, I would ask to be referred to an Electrophysiologist (EP) as they are Cardiologists who specialise in arrhythmias. Under the current climate, that might take time, so if possible, consider a private consultation which would cost £200 to £300 plus tests unless you have any copies. Generally, if a CV works even for a relatively short period, it can indicate that an ablation is likely to be more successful, but you need professional advice on that.

Sleep problems are also common, again for a variety of different reasons, but anxiety sits fairly close to the top of the list!

I hope you soon get the medical help you need, best of luck, John

[Hidden in reply to Hidden]

Ps I assume you know that heart failure is not instant death!!

[Mickhall in reply to Hidden]

Flapjack thanks for good advice, I do know heart failure is not instant death now, but I didn't know when the consultant told me, still that is in the past. I have had ECG's and echocardiogram can I ask NHS for copies?

[Hidden in reply to Mickhall]

I believe you are entitled to copies although you may have to stand your ground. It would help if you could provide dates when the tests were carried out....good luck

[etheral]

Ask about a Holter moniter to see what your heart is really doing in terms of tythym and ectopic beats.

[momist]

"I just don’t understand why the medics don’t sit you down and talk you through the outcomes and treatments available for AF" Me too! The response from the general medical profession seems to be wildly variable, from all the nightmare stories I've read on this forum. All the advice you have so far been given is to ensure that you get to see an ElectroPhysiologist (EP). They are the only ones likely to fully understand what might be wrong with you, and what can be done about it. Of course, which one you get to see will determine whether they try to tell you what is going on. Mine seemed to be willing to give me as much time as I needed, but only the once. Just keep on asking!

[Hidden]

one of my conclusions drawn is theres a hell of a lot unknown about these heart rhythm conditions,when your lying there at 4am in the morning with a heart going bannanas,its not surprising you fear the worst, this condition is like water torture.it reminds me of being in the fauklands war ..you knew victory was there but you might not live to see it, courtesy of an argie bullet.

[Hidden]

Well, with you being a Veteran, you deserve the very best care available. Hats off to you Sir.

The problem with a 24 hour Holter monitor is that it is often normal because we did not have palpitations during the recording. 5 or 30 day recorders are more useful.

That's why many of us buy a "Kardia" device to get an instant recording to show to the doctor.

This could be ectopic beats, which are not serious but can be very uncomfortable. Still think you should see an EP.

[Hidden in reply to Hidden]

ive just seen the doctor he gave me an ECG and referred me to the local cardiology unit,if it wasnt for the lack of sleep factor I probobly wouldnt bother about it.I mean im just so tired..

[JaneFinn]

Hey Charlie, just caught up on your thread. So sorry to hear about your AF related sleeplessness 😩 Lack of sleep is indeed a form of torture, like you said- and we badly need sleep to heal up.

Just a thought - I’m sure you’re not sleeping on your left side? For many people this can make things worse. I sleep on my right, and to help me sleep, I do as CDreamer says and have an audiobook on in the background.

I’m so glad you’ve been referred to cardiology - you definitely should go ahead, even if you’ve managed to sleep by then. As everyone has said, do ask to see an EP for the rhythm stuff, if that’s not who you’re seeing first.

Did the GP’s ecg pick up the rhythm you’re feeling? Hoping that soon you’ll be getting the most appropriate treatment ... and even sooner getting some good sleep and feeling more yourself again. xx

[Hidden in reply to JaneFinn]

to be honest i dont question the doctors authority who am I to tell him what type of cardiologist to see. I guess years of being in the military you are trained not to question things. With the sleep I do have trouble sleeping sometimes I have nightmares,its not all due to heart rhythms ,although they certainly dont help,I found that sleeping on the left side triggers off bad heart rhythms so I keep to the right,but generally im in good health . Many years ago a bullet from a sniper in west belfast grazed my left shoulder and I think about that a lot ,another reason not to sleep on the left...thanks for your input ..regards..

[JaneFinn in reply to Hidden]

No wonder you have nightmares... As oyster said earlier, hats off to you for your military service, and I hope you get the great medical care you deserve.

I think the unquestioning attitude thing is a great way to live in many ways (it’s the opposite of the ‘it’s all about me’, compensation culture!). I don’t tend to question things either, but not for an admirable reason, just because I’m not assertive enough about myself!

Hopefully you have medics who are making the best decisions for you anyway. But I’ve learnt A LOT from reading people’s posts over the last year or more, as well as the AFA alliance information. And two of the things that stick with me are: Find out what I can about the condition, possible treatments and meds, so that I can have an informed conversation in my appointments. And: No one else knows my body like I do or cares as much about my life as I do, so I shouldn’t hesitate to ask or even push to get the best treatment/ course of action for me. (I’m hoping I’ll put that into action when I need to!!)

I was thinking of you overnight as I put on my audiobook and hoping you got some sleep at least...

(Btw I too wonder about all the wifi electronics in the atmosphere affecting the electrical activity of the heart - and brain function too.)

[Hidden in reply to JaneFinn]

regarding the wi fi ect ,when you think about the very low voltages involved with electrical heart activity , it wouldnt take much, I wouldnt have thought, to disrupt them im surprised we dont have more problems to be honest.my heart rhythm now is a lot better thanks , ive a feeling its related to a heavy cold thats seems to have appeared, i managed to gets a fair bit of sleep(for me that is) I hope your condition is good as well..regards..

[JaneFinn in reply to Hidden]

Oh that’s good news Hoping it’s onwards and upwards from here x

[Faraway126]

One year now after the ablation don't feel well ..my life changed and I can't make any activities .I have heartburn

[Ianc2]

with regard to not sleeping on your left side I had a chat with my cardiologist regarding this and asked him about how the heart is attached to the body. He replied that basically it hangs off it's arteries and veins. if you go sleep on your left side it tends to bump up against the ribcage and any irregularities are more noticeable.

If you sleep on your right it tends to cushion itself on your lungs, and so you sleep better

[JaneFinn in reply to Ianc2]

That’s very interesting! Thank you!