Don't really know what I'm dealing with, and can't get a doctor's appointment any time soon

[chaba222]

Hi everyone. It's been two weeks since I was in hospital, having had two bouts of atrial fibrillations in one day, completely out of the blue. I'm still pretty mystified about the whole thing, and of course very scared it will happen again. My GP has run blood tests (all fine) and put me on a waiting list for a 24hr ECG (apparently the surgery only has one monitor!), but the earliest appointment available isn't until mid-February. Meanwhile I haven't dared to drink alcohol, and have hardly dared risk any caffeine or exercise. Nothing has happened since, though I was completely exhausted for a week after my run-in with casualty and still don't feel completely balanced (keep bumping into things on my left side and touch typing is very laboured).

I feel sure this isn't normal for someone my age (38). I'm otherwise really healthy. I'm a bit of an eco-warrior so I walk everywhere, I play netball and swim... I would love to feel reassured that I'm OK, but without ECG tracking my GP has nothing to go on. It doesn't sound like the hospital shared their notes so that's pretty rubbish.

Does anyone know of any personal ECG trackers that are available? - I'm really keen to see what's going on. I saw a Withings scanwatch featured in the Metro last week but apparently it's not available until later this year.

Thanks in advance for any advice.

Clare

[Nathan53]

Hi Clare - one of the popular devices which comes to is the kardiamobile. It generally seems well reviewed by users link att:

kardiamobile.co.uk/

Note I have no personal experience of it but maybe it's a starting point for you

[chaba222 in reply to Nathan53]

Thanks Nathan. I'll check that out.

[Lucymoo]

Hi, if you buy a Fitbit with health monitor that will help. I sometimes get two incidents a day recently diagnosed with PSVT. Took 3 months wait for 5 day ecg to confirm diagnosis but having to wait 4 months to see cardiologist as condition not life threatening.....but increased risk of stroke. My GP great

[chaba222 in reply to Lucymoo]

Two incidents a day, you poor thing! As for the waiting list issue, sounds like we're in the same boat. I'm just amazed I was sent home with no advice re diet/exercise/sleep or anything at all. The doctor just confirmed I wasn't experiencing any problem right at that moment and sent me on my way.

Do you use a fitbit? Seems like there are load of different ones...

[Lucymoo in reply to chaba222]

I do use a fit bit and show the results to my GP when we’ve been sorting out beta blockers and anticoagulants whilst I wait to see a cardiologist. Helps me to know when I’m having a problem and for how long....stops me being neurotic

[chaba222 in reply to Lucymoo]

That seems like a good idea. More information is usually helpful, especially if it stops you from worrying. Also, a 24 hour monitor is only going to capture what has happened in 24 hours and there may be no episodes to record. It makes sense to monitor longer term surely so if Fitbit helps with that, that's great!

[NathanBlau in reply to chaba222]

Hi - how did your AF experience work out. For me, it was an eventual confirmed diagnosis and a Cardiac Ablation in July. Touch wood, I feel perfectly fine now with no irregular beats. I appreciate its early days but have resumed all physical activities and feel great.

Sincerely hope you have found a way through this.

Best regards

[chaba222 in reply to NathanBlau]

Thanks for asking...it's been a bit of a weird one. For me it turned out not to be AF but a seizure response to a stroke. It happened again at the end of January and this time when I arrived at A&E I had a CT head scan. This showed a massive bleed and after a fortnight on a neurology ward I had surgery to remove a brain tumour. Following this I had a further episode of AF but was told this was due to pressure changes following the surgery. And in March I was diagnosed with metastatic melanoma. I'm now on treatment and I'm doing OK, but if I had to choose my illness I feel like AF would have been a better choice

It's good to hear your situation has panned out well. Glad you're feeling well. I am too, despite the diagnosis. I was in two minds whether to post this as I don't want to frighten anyone in a similar situation. But I'm told my situation is very rare. Lucky me!

[ILowe]

You ask about 24 hour monitors. I have often wondered why they seem to be in short supply and have wondered why charities such as the BHF do not loan out the devices (for a donation) and you then take the results to your doctor.

The good news is that the market is expanding, and becoming user friendly. As I see it you basically have three broad categories to look at

1/ The watches, chest straps, and fitness monitors

2/ A portable ECG monitor that you use when you want to and gives you a 30 second trace you can print

3/ A portable ECG monitor with wires that you attach to your chest which covers 24 hours. NB on this one, check also the computer software that analyses the results. This newer machine seems to be making waves

Try on Amazon searching on "holter heart monitor" and you will see what I mean.

[chaba222 in reply to ILowe]

Oh yes, it's a bit of a minefield isn't it?! I read an interesting article earlier saying that fitness trackers use different tech to the Holter monitors, but that when the median average length of time is 84 days to record an episode of AF it makes sense to wear something on a longer term basis. Here's a link in case it's of interest to anyone:

blog.cardiogr.am/atrial-fib...

[NathanBlau]

I have had similar experience to you with A&E admission with atrial fibrillation just before Christmas. I was scheduled for cardioversion last week but found at pre-op assessment that my heart had resumed normal rhythm so procedure cancelled.

Even through the hospital I now need to wait until 20th Feb for fitting of 24 hour monitor so you may not do any better than your GP unless private treatment is an option. I was absolutely assured in hospital and by my GP that the wait is not an issue, so I would recommend that you try your best not to over think it until such time as it is fully tested and diagnosed. I cycle and go to the gym 3 times a week as part of my cardiac rehab (for last 3 years) so I was concerned about the exercise issue but was again reassured that I could do what I can do and just slow or stop if I experienced and discomfort or issues. I rested for a about a week or 10 days and the restarted my normal regime after Xmas with no ill effects at all.

I am not sure what the future regime will be if it is discovered that the AF is intermittent but at this point I am hoping that it will not recur. I know this is not normally likely but the hospital thought that it may have been triggered by a long running chest infection which I have no overcome - fingers crossed!

Wishing you the best.

[chaba222 in reply to NathanBlau]

Thanks Nathan, it's good to hear that you managed to get back to your normal amount of exercise without any problems. I'm planning to brave a swim later, so hoping that'll reassure me I can do stuff!

Mine was triggered by dehydration (caused by drinking at a party the day before and a delicious cooked breakfast as a hangover cure). I'm just so glad I wasn't driving when it happened! I'm now drinking water all day long...not due another night of drinking booze for a while....if ever....fun fun fun

[NathanBlau in reply to chaba222]

Must have been some party!

[chaba222 in reply to NathanBlau]

Haha, it was fab, thanks - lovely friends from uni days and a proper get together. I wasn't even that tipsy, though I guess tolerance declines with age. Shame...

[not2worry]

AF will drain you of your energy and is very frightening if you can actually feel the heart beating so fast.

I too am surprised they sent you home without any information on your condition as well. As our doctor told us, there is no such thing as "a little AF".

While AF won't kill you, you do need to be aware that because of the erratic effect AF has on you electrophysical condition blood can pool and create clots which is why folks with AF take some type of blood thinner. My husband has silent AF so he never feels an episode. Lucky for us they caught the problem at a Cardio Rehab session.

The first thing they did was put him on a blood thinner.

After months of trying to get him back into sync they finally recommended a Pace Maker. He had the procedure in September 2018 and he's back to feeling great. He will, however, need to take a blood thinner for the rest of his life.

Ask you GP if based on your diagnosis if at least you shouldn't take an aspirin.

[chaba222 in reply to not2worry]

The energy thing is interesting - I often get tired but thought it was just introversion and nothing that downtime can't solve. I sometimes take a power nap, and always wake up after 15-20 mins. Thinking about it now though I can often feel my pulse being faster than usual when waking up. No idea if that's normal, but it's never worried me before.

[seasider18 in reply to not2worry]

Did your husbands AF start like mine after heart surgery ?

[not2worry in reply to seasider18]

He had a by pass 20 years ago. And had no problems since then but had regular check ups every 6 months.

We then lost our home in the California Wildfires in 2017 and as you can well imagine that brought on a tremendous amount of stress.

Long story short, we relocated to Florida 2 months after the fire, drove all the way in the only thing we had left - our car.

Three weeks after we arrived here he started to have to have chest pains. Went to the ER and immediately had an angiogram and they put in two stents.

Two weeks later he started cardiac rehab. Went to about 6 sessions and they one morning he's on the treadmill and they said they got an AF reading. Immediately sent him to the cardiologist and then our search for the remedy was started.

I noticed you were prescribed Amiodarone. After one unsuccessful cardioversion he had another done 30 days later. Immediately after the cardioversion the physiologist put my hubby on Amiodarone in April. It got his AF under control but the medication started to affect his liver. When the doctor prescribed he told us it was a nasty medication but due to his condition it was the only option. While on the medication he did gain his strength back and he stayed out of AF. In September all was going so well, with the exception of the affect the Amio had on his organs, they decided on proceeding with a pacemaker. He has one that has two leads that can sync the left and right heart chambers. It's amazing how he had bounced back almost 18 months later. He's on warfarin, and monitors his INR weekly. He wasn't a candidate for some of the newer drugs that thin the blood. But we haven't had any problems at all keeping in the INR range of 2-4.

Prior to discovering the AF, which was never detected before, he had only been on the standard heart meds.

The pacemaker procedure was so much easier that we thought!

[seasider18 in reply to not2worry]

Some story. I was supposed to get a dual chamber pacemaker but for some reason I had a single chamber one fitted and no one has found out why. My concern was to make sure it was MRI compatible and I assumed that it was dual chamber as I earlier had a phone call telling me that I needed a dual chamber on fitted as a matter of some urgency. After nearly four years I guess it is keeping me going.

I was contra indicate for NOAC's and had problems with Warfarin so I had an Amplatzer amulet fitted privately.

[seasider18]

38 seems young to get AF out of the blue. The lack of balance seems unusual. I've never had that with AF apart from when prescribed Amiodarone which disturbed my equilibrium. Had you been on any medications for other things just prior to the AF starting.

healthline.com/health/atria...

[chaba222 in reply to seasider18]

Nope, no meds at all! Thanks for the link re. triggers