Nightmare with(out) flecainide. Cannot get help from NHS.

[Redactrice]

This is a follow-up to a post I made earlier this week, trying to figure out whether to take a previously unused flecainide prescription as a PIP.

I was diagnosed with lone paroxysmal AF 10+ years ago (I was not quite 50) but it has not been a regular problem -- I didn't need regular meds. Due to the pandemic I have not seen a cardiologist for nearly 4 years (Dec. 2019), and I didn't push for it because my problem remained infrequent until very recently. I think it's worse since I had Covid four months ago.

Things have changed. I now think I'm in low-level fib fairly often (but haven't had "fast AF," with tachycardia, since June 2019, until this week). I asked for a new referral to a cardiologist back in June and got an appointment...for a phone consultation in January. I have had lots going on and I know very well that the NHS is in meltdown, so I didn't push.

Right now I think I have been in fibrillation for at least four days. I have been taking low doses (12.5mg) of metoprolol to try to keep my heart rate down, but I didn't have any way to confirm arrhythmia so I was reluctant to take flecainide along with the metoprolol. Eventually, on the third day of suspecting I was in AF, I borrowed a smart watch with a cardio app -- yup, I was in fibrillation.

I am sure I was told previously that cardioversion (flecainide as a PIP is chemical cardioversion) could not be performed after 48hrs in fib, so I was afraid to take the flecainide, especially because I had taken the metoprolol separately and didn't want to risk OD'ing on metoprolol if I took another dose with the flecainide as instructed on the box. I re-read the leaflet on flecainide and it gives two reasons why I should NOT take it. I have heard from several other people with AF that the first time they took flecainide was under medical supervision, and having read the leaflet, I can see why.

The prescription was given by a cardiologist, not my GP. Whenever I discussed AF with a GP (I rarely see the same one twice in a row), they would try to steer me in a direction that the cardiologist(s) and I had already agreed I did NOT need to go: e.g., GPs always say "You should be on blood thinners" whereas three cardiologists have said "You don't need blood thinners yet and you shouldn't take them until you absolutely need them."  So I was reluctant to ring my GP to discuss the current problem. Then there's the difficulty of actually getting through to a GP: the last time I requested an e-consult, it took over a week to get a reply, and another week to get an appointment.

I toughed it out for another day, taking metoprolol sparingly (12.5mg morning + evening). With the metoprolol, my heart rate was staying under 80bpm, which is high for me but still in normal range.

Meanwhile I'm having terrible insomnia; the AF is keeping me awake and I'm starting to get quite wound up. (To the person on another thread who recommended mindfulness to me -- mindfulness is not going to fix this, and it is not about "anxiety"!)

Yesterday, the third day, my heart rate hit an average 120bpm in the morning. I took metoprolol and it dropped back down to 75ish, but I really did not feel well, and got tingling hands, which has been the precursor to severe tachycardia three times in 12yrs. I waited a while, thought about calling 111 but I know from experience that they would want to call an ambulance -- they would not be prepared to advise me whether to take the flecainide I already had ready and waiting.

As the metoprolol began to wear off around lunchtime, I felt much more unwell, which felt like massive tachycardia on the way. I gave in and called 999. They agreed I needed an ambulance but warned me that the wait would be 1--2 hours because they were so backed up.

Around 90min later, 111 phoned me and said that the ambulance would be delayed even longer, and to please get myself to A&E by any means EXCEPT driving myself (I had no intention of driving). I called a taxi.

The hospital was a shock. This was my first visit in four years and the difference was stark. I have had three previous trips to A&E due to fibrillation, and on each of those occasions it took less than 10min from the time I entered A&E to being in a bed hooked up to an ECG. This time the receptionist said, "The good news is the wait for triage is only 10min. The bad news is that the wait for a doctor is two to three hours."  And this was mid-afternoon (before the end of school), a relatively quiet time.

I remained sitting in the waiting room except for triage/getting an ECG and bloodwork. After about 2hrs, a junior doctor came out and examined me with a stethoscope (she had nothing to say about the ECG I'd already had, or the bloodwork). I explained why I had not taken the flecainide, showed her the packet and asked whether it was safe to go ahead and take it on the third day in fibrillation (the third confirmed day; I may have been in fibrillation before then). She said she would consult a senior colleague and went away again. My sense was that I may have been the first live patient with AF she had ever seen. Too many of the more experienced doctors have buggered off.

I suppose there was nothing on my ECG to indicate I needed to be admitted immediately. BUT my previous experience strongly suggests that the primary reason they sent me home was that they simply did not have the capacity.

The junior doctor came back out into the waiting area and told me, "We can't do anything for you. We can't give you any treatment because it might cause your heart rate to drop too low. Go home and see your GP as soon as possible."  This was at 17.15 on a Friday. No chance of speaking to a GP for the next 60 hours...and GPs are not cardiologists. I NEED A CARDIOLOGIST. NOW.

I had another uncomfortable night with disrupted sleep, but this morning -- the fourth day -- my heart rate had dropped to normal (60--70bpm) without any metoprolol. BUT the cardiac app showed I was still in fibrillation (which I already knew; I wasn't feeling as bad as yesterday, but I was far from well).

Later this morning I found the nearest open pharmacy and walked in to ask for advice. The pharmacist heard me out, looked up flecainide online and basically said that this was above her pay grade, that I needed to go to hospital immediately. I said, "I was there yesterday. They did an ECG and bloodwork and they sent me home to wait all weekend to see my GP, despite the fact that I was in my third day of confirmed fibrillation."  She was very sorry but there was nothing else she could do; I needed to see a doctor. Yes; that was why I went to A&E.

I debated phoning 111 again, but I could anticipate how that call would go (identical advice to the pharmacist's: "This is above my pay grade. You need to go to hospital..."), so I didn't bother.

If I get any worse, I'll have to phone 999 again and pray that an ambulance comes.

Otherwise I'll be on the doorstep when my GP opens on Monday morning, with PDFs of date-and-time-stamped ECGs that I've taken on the borrowed cardio app for several days! I expect I will be sent to hospital. I suppose at least there's a better chance of a cardiologist being on duty on a Monday than on a Friday...

Bedtime. Still in fibrillation. 96bpm.

Wish me luck (and a decent night's sleep, which might help more than another trip to A&E).

God in heaven, the state of this country. No, I don't blame the NHS or the GPs or the pharmacists, most of whom are doing their best in impossible circumstances.

[pip_pip]

Hi. Take the flecainide . You have a means to an end here. You could try it.

It might have stopped all this . You need anti coags as well. Maybe not before but certainly now.

I have to admit I've never heard the reason they could not treat you, becos there are meds that don't push the rate down they could help you with. Like flecainide. Or even a cardioversion. For what it's worth, you might get the Metropol changed as well. Maybe.

Probably not what you want to hear overall.

Sorry for your troubles.

Phil

[meadfoot]

What a state our NHS is in. Sorry to hear of all the upset and hassle you are going through. Clearly you need to see a cardiologist quickly to sort this out. Can you afford to pay for a private consultation. Sad that our health system once so good has come to this but the priority is your health.

Turn up on your GP doorstep tomorrow if you are able too. This situation needs more than a GP has to offer but you have to start somewhere. They could give you a referral letter to see a cardiologist privately. Bet you would get to see one within days that way.

Hope you get some help one way or another. Is there another hospital in your vicinity you could try if you feel a and e help is needed.

[BenHall1 in reply to meadfoot]

Sadly Meadfoot, a former politician now an inhabitant of jungles at times, well and truly grasped the nettle when CoVid hit and used this pandemic as the opportunity to dismantle the NHS we used to know and this mess is the result of his handiwork !

John

[Popepaul]

Some valid comments from Pippip above. It is important to keep your Afib burden as low as you can . The condition tends to be progressive for most of us. You are obviously very keen to see a Cardiologist and a timely appointment is not possible.Some time ago a Consultant advised you that Flecainide would be efficacious and he/she gave you a Px. With this in mind, if I was in your position I would take the medication unless of course you think that your health status has changed (other comrbidities which you think might contra-indicate the use of flecainide).

Unfortunately your experience with the NHS is now common to many of us. If you can afford it make an private appointment to see a Cardiolist. This should speed up any subsequent treatment with the NHS.

You say that anxiety is not a feature of your current AF experience. I would be very surprised if this was the case given your current obvious distress. I believe that anxiety will exacerbate symptoms by raising cortisol levels and heart rate. It can both worsen and sustain the Afib.

Regards and good luck.

[CDreamer]

I am sure it is very much a shock for you but unfortunately I am not surprised at your tale.

May I suggest that you if you are concerned that you ring the AFA help line, they can be very helpful.

My husband asked for a referral to cardiology for a review and explanation of an echo, we moved area in May 2022, three months later he got a letter saying that the wait would be at least 58 weeks, that was 18 months ago and nothing since.

Once you are in the system, it is ok but getting into the system is the problem. Many of us go for a private consultation with an EP who also has practice in NHS. That works. We eventually saw an excellent EP last week and had a good conversation which reassured my husband who had been fretting because he hadn’t been seen for about 3 years and his pacemaker is due for replacement. He was able to look up my husband’s records electronically.

Secondary care usually hand back to GP when a person is stabilised so that it is not unusual not receive follow ups on the NHS. You will need another referral from GP as they are the gatekeepers for secondary and seeing the same GP will not matter as long as you are at a good practice as GPs nowadays should work as a team. There is nothing wrong with telephone/virtual calls unless you need a physical examination, actually I quite like them. Your GP will not be able to advise you on Flecainide unless they were a cardiologist which one of my previous GP’s was, as only a cardiologist can prescribe and advise. After 3 days in AF you would need to be supervised and I think you are quite right not to try it on your own, unlikely to work unless you took full conversion dose. And A&E will not treat if you have attended an outpatient clinic unless you are an emergency and obviously they thought not as you were seen and not admitted.

At three days in AF you DO need to be on anticoagulants so please ring your surgery and ask to see an emergency GP. You can ask them to write to cardiology as a matter of urgency for a referral but I wouldn’t hold out too much hope. You may need an ECG trace - did A&E give you a copy? If not, your surgery may be able to give you one. If not buy yourself an Kardia and track yourself, this provides valuable information for when yo do eventually get to see an EP. Are you registered to receive a copy of all letters between GP and Secondary Care? If not go down to your surgery and make sure you are.

Alternative - find an EP in your locality and pay for a consultation - you may still need to wait but at least it will be weeks and not months cost will be circa £150 - £250 (we paid £150).

Is the system broken? Unless you are an emergency - pretty much. And whatever you think Mindfulness does help, won’t ‘fix’ your AF but then nothing might but it because it is a chronic condition but it may help you cope with it.

Hope you are able to get support very soon, do look at the information on the AFA website, consider going to Patient Day - coming up very soon - or register for the online series - Living with AF as information is potential power.

heartrhythmalliance.org/afa

The Helpline number is top right corner.

[Ducky2003]

What a ridiculous state of affairs when a hospital tell you they can't help but suggest your GP is better equipped.I've never heard of not being able to give someone a cardioversion because they've been in AF longer than 48 hours. I've certainly had elective ones, booked weeks in advance, due to very persistent AF.

I know it probably goes against the grain but sometimes you have to make an absolute nuisance of yourself to get the treatment you need.

[baba in reply to Ducky2003]

"never heard of not being able to give someone a cardioversion because they've been in AF longer than 48 hours. "

It would be ok if the person was on anticoagulants, this person is not.

[Ducky2003 in reply to baba]

Good spot. Misread that bit.

[Denise-]

I am so sorry to hear of your terrible experience, how different from before covid. Sadly our nhs is in melt down, despite millions of extra money being pumped into it. I worked for nhs 23 years, management waste billions, strikes are causing so much distress to patients waiting for treatment. I take flecinade and my cardiologist advised taking as a pip during af episodes. I also haven't seen a cardiologist since 2019. They signed me off as I was coping. So worrying but all you can do is see your Dr. and insist on a quick referral. Good luck and let us know how it goes.

[dmac4646]

Shocking treatment - one thing I would say is be careful with the combination of metoprolol and Flec - it can (and did) in my case cause collapses …..I would be cautious re the dose of Flec

[Halfheart in reply to dmac4646]

It is standard practice to prescribe metoprolol to go with a flecainide prescription, in case the flecainide results in flutter with 1:1 conduction. I don't agree with discouraging someone from taking their prescribed drug combination based on a separate experience that one other patient had. Statistically, flecainide with metoprolol has been shown to be effective and safe.

[dmac4646 in reply to Halfheart]

Did you actually read the post - he had a previous prescription for Flec no dosage mentioned -.

[Thomas45]

I've now read both your posts as well as your potted biography, and am genuinely sorry that you caught Covid.I'm surprised that you have boxes of unused drugs. We don't know what your stressful day is, nor why you think it appropriate to use CBD oil.

I found it odd that you needed to borrow a smart watch and app to determine whether or not you have AF. I had pounding in my chest and an awful feeling in my neck. After 22 years of paroxysmal AF, mine has been asymptomatic for about 6 years. It's permanent so it's there every second of every hour of every day .

Anticoagulants, do not thin the blood, but do reduce coagulation, also reduce the likelihood of AF sufferers from having debilitating strokes. There's the old type of anticoagulant, Warfarin, and the modern DOACs, Direct, oral anticoagulants, which both reduce anticoagulation, and should be looked upon as a friend.

Accident and Emergency departments of hospitals are for accidents and emergencies. While 111 may have received the idea from you that it was an emergency, thankfully on testing your blood and checking your heart's rhythm they were able to discharge you.

As for Flecainide I took it as regular medication for 12 years, originally 50mg twice a day, rising to 150mg twice a day for 10 years.

I have no intention to cause you any hurt, as I always try to help all people, but can only advise you to trust your GPs.

Despite the doom and gloom picture painted by some, in the village I live in people say how easier it is to get appointments from our local medical centre. We have to use an online form, but people soon get call-backs and appointments where needed. I have at least annual blood tests, and annual asthma and AF reviews. I see Specialist Lymphoedema nurses at a hospital 2 bus rides away. I know if I have problems with my Foot Drop that I can get a hospital appointment within a few weeks.

[Tapanac]

Flecainide is my miracle drug. As long as it’s still in date do try but no more than 300mgs in one day. 50 should help in the morning then snother 50 st night (12 hours)

[Buffafly]

I have to comment because like Thomas I think the remarks regarding the NHS are unfair in this instance. The hospital couldn’t do anything for you because your AF rate was already low and giving you a rate lowering drug would have meant that should you suddenly revert your heart rate might be much too low, needing an emergency procedure to raise it again. Flecainide can cause dangerous arrhythmias itself so medics were right to be cautious if you hadn’t had recent heart tests. I recently had AF at varying rates up to 160 for a couple of weeks but the cardiologist I saw (arranged as an emergency by my excellent dr) was concerned (because I’m 78) but not enough to decide I needed a hospital admission.

I know disturbed sleep is very distressing so maybe your gp can prescribe a sedative of some sort to help you relax. You could also try controlled breathing exercises - tingling in your hands could be caused by hyperventilation which would also tend to affect your heart rate and rhythm.

Do let us know how you get on with the GP.

[sdweller]

It's simple, you need to see an Electrophysiologist, NOW. Go through your GP... get it one NOW. I think you should take the Flec... but I'm not a doctor so what I think on thahg does not matter. SEE A DOCTOR NOW

[Halfheart]

You are over-thinking it. You were prescribed flecainide, so just take it. It is highly likely to work. Instead, you have talked yourself into doing anything but that, for no logical reason. You have the solution in your hand, but you are getting distracted.