A fib happening almost every day. Hi

[ETHEL103]

Hi everyone. My a fib seems to be happening almost every day. Is this progression a normal occurance. Yet to see a specialist EP. Seen a private cardio twice but still feel out on a limb.

[Hidden]

If it will make you feel a bit better, I also have regular AF bouts, but at night, and almost every night. In my case, it may have lasted for a decade or so. I know that it is not good for the heart, but when asleep, I am quite irresponsible, lol. Luckily, when I wake up and get out of the bed, my AF goes away, and my days are AF free. Until now, I have not noticed any damage on the heart, it performs its tasks quite correctly, even under a heavy physical load (I am almost 69).

[ETHEL103 in reply to Hidden]

Oh that's really strange isn't it? I usually feel better at night. Not sure what the worse senareo. Isn't it trick falling asleep with your a fib. My heart is very skitty at all times in a fib.

[Hidden in reply to ETHEL103]

No problems to get asleep at all. While I am awake, and in bed, the heart behaves. After I fall asleep, it goes in AF, but almost no symptoms. When I wake up at night, I feel this strange shivering in the chest, but HR remains relatively low (never above 90). In couple occasions, I got awaken after an hour or so, and already in AF. When the cat is not at home, the mice dance, lol.

[Paulbounce]

Hello Ethel.

Yes it can happen. In someways I would prefer to be in persistant afib and seek treatment rather then than it coming and going everyday - your body might adjust more to this rather than have a daily occurrence when it comes and goes. I think if this is happening to you the most important thing is to take an anticoagulant to reduce your risk of stroke.

All is not lost though. If you go back in to sinus (normal rhythm) it shows your heart could well repond to treatment. Maybe it's worth talking to your medic about rhythm control - it could help. Medication such as Flecancide can / and does work for many. Only your cardio or EP can help with such matters.

For me personally I am in persistant right now. It's taken a month to adjust but I couldn't be doing with it coming and going everyday - no way.

I think it's one of those things that I'm either in or out- no halfway house for me.

Paul

[ETHEL103 in reply to Paulbounce]

Thankyou Paul. Yes it's really horrible coming every day. I only had my first event a few months ago so I'm really worried about the picking up of events daily. I've not actually seen anyone on the NHS but 2 private cardio visits and am just trying to get a private EP. My recently accuired government pension funding my heart at the mo. Money well spent in my opinion. I'm only on Verapimil and apixaban but I defo need rythmn control drugs. Don't want to go on too long feeling like this if I can get some help.

[Gymbiker in reply to ETHEL103]

Hi - I note that you are taking verapamil and wondered what side effects you are experiencing. My Cardio is suggesting I move to this drug from Bisoprolol as I am feeling light headed all the time. Looking at side effects on the new pills, it would seem dizziness is one of them?

[Loafinabout in reply to Paulbounce]

It doesn’t help that a large percentage of family doctors now work part-time since their NHS ‘employee’ status changed back in the day. It won’t get any better as a recent survey showed that nearly 80% of trainee docs intended to work part time. Yes there are dedicated medics but you mostly see them on tv progs now. Here in the UK we’re in a halfway house with a creaking system that works well in serious illness/emergencies. Many with chronic illnesses do not get access to timely or innovative treatment and what you get often reflects your postcode. We are now at the stage where, for many reasons, a medical insurance system could be preferable to the blind belief that the NHS does all things for all people.

[Gertsen in reply to Loafinabout]

What a negative post about the NHS. Don’t blame them blame the government for lack of funding and privatisation. And going the American way will leave many without healthcare. I have only hood things to say about the NHS

[Loafinabout in reply to Gertsen]

This is not the place for political point scoring nor stifling critical feedback. I can’t remember advocating the American system in my post either. I was telling it as it is from my experience and (if you overlooked it) as a result of radical Gov changes imposed on the NHS a few decades ago - which had doctors marching the streets. There are many on this site who have difficulty getting the optimal treatment they need and this is a forum to share their experiences and seek advice and find support.

[ETHEL103 in reply to Gertsen]

You obviously haven't waited 7 months for an appointment.

[Jetcat in reply to Loafinabout]

I agree, you’re quite rite..

[Paulbounce]

Do you know Ethel - the older I get the more I feel 'being nice' in this world doesn't always work. Most of the time it does but not always.

I think you should call your doctor and explain how you feel. Your doctor is unlikely to be help regarding your med's. However being in afib everyday is not something anyone should take lightly.

I am also in a similar situation. It was last week since I last spoke to my GP and told it would take a 'few days' to get a response from my cardio. Have I heard back ?

No.

I know the NHS is busy at the moment - fair enough. My HR is also 'busy' and to high for my liking.

I'll wait until Monday. If I don't hear back (unlikely) then it's be a pest time. There are to many lost follow up's for my liking.

Sometimes we have to knock on doors to get a response.

Paul

[ETHEL103 in reply to Paulbounce]

So true.

[Dodie117 in reply to ETHEL103]

I agree with Paul. Be a pest. I know going private is faster but unless you can afford all the treatments etc you won’t get the same follow up. Insist on seeing GP, ask for referral to EP and harangue everyone until you get seen. You need proper tests and treatment. Good luck ☘️

[Spinners in reply to Dodie117]

See if you can find a private EP who also works for the NHS, as mine does. The private consultation is well worth it, as they can explain everything in detail, then they will normally give you the option of having your treatment under the NHS.

[Singwell]

I absolutely second what Paul says about being a pest. It's your health you must not be embarrassed to fight for it! I also empathise with your anxiety as a newly diagnosed AFibber. Are you keeping a log of your episodes - when, how long, what seems to help them go away? Although it sounds a bit obsessive it can help you fix patterns and maybe give you a bit more control of your life whole your waiting for a better management plan. Because, in the end, if you don't have a medical intervention like ablation, that's what we learn - how to find our best management plan. For most of us that's a combination of lifestyle changes and medication. There are a number of rhythm control meds and it's worth you exploring them if if an EP can advise. Personally I would now be using your heart fund to pay for a private appointment with an excellent EP. They are the arrythmia specialists, not the cardiologists! Google for Top Ten Electrophysiologists in the UK and book yourself in, taking results of any tests you've had already.

[ETHEL103 in reply to Singwell]

Thankyou. Yes I'm logging events and printing out my Kardia ecgs.

[CCW66]

For what’s it’s worth, afib at night could be due to sleep apnea. Even a mild case needs help.

[Loafinabout in reply to CCW66]

Yes true. I’m being referred to a sleep apnea specialist because of persistent AFib.

[Montsauton]

Hello Ethel, I started with just occasional bouts of Afib but then it became almost daily, usually in the evening after eating. I'm now on Flecainide which seems to have stopped it. I can sympathise with what you're going through. I hope you get to see a cardio soon.

[Spinners]

Don't sleep on your left side, as that makes you more aware of your heart beat. Maybe that is why you are aware of it at night and not in the day time.

My EP sent me for a sleep apnea test as he said it could be related to AF. Didn't really think I had it, but hey presto, results came back as just into moderate sleep apnea. I didn't want to go to have a CPAP machine fitted at a time when our district had the highest Covid rate in the country.(The Kent virus originated here) So I now sleep with my head raised by a wedge, which seems to have done the trick.

My AF is still here, but most of the time I am not aware of it. Only when I think about it. Having decided to settle for permanent AF, I don't worry about it so much, and so it is less troublesome. I have adjusted my life to it. No morning rush to get ready and go places if I can help it, regular bedtimes, etc.

I saw an EP privately. He also works for the local hospital Trust, so after the initial appointment everything was done on the NHS, although all my appointments were still with him.

Hope you will get sorted, so you can relax more. That might reduce your symptoms too.

Beat of luck!

[ETHEL103 in reply to Spinners]

Thankyou.

[baba in reply to Spinners]

“I didn't want to go to have a CPAP machine fitted at a time when our district had the highest Covid rate in the country.”

CPAP machine would be the best bit of kit to have if you were unfortunate enough to get covid.

[Spinners in reply to baba]

I learned that since, but our local hospitals were so full that they were sending patients to the other end of the country. In the same situation, even knowing that, I would have made the same decision.

I waited 6 months from the time my EP referred me, then went for the test kit in the first few days of lockdown, feeling very concerned about the lax precautions at the hospital department. After that I waited another 6 months before obtaining the results and a further 2 months for an appointment to have the machine fitted. By that time I had long since researched it and found that sleeping on a wedge stopped me waking up with a start during the night and falling asleep during the day. Wonderful!