Frightening hospital stay and advice needed can't go on at home like this!

[emmap985]

Feel dreadful and would so appreciate some advice! I follow alot of this forum on AF and have done for 4 years. I find it so helpful and all you afibbers understand how awful it feels. I had AF diagnosed after a stressful time caring for my own mum when she was ill and it started just before she died. Then accelerated after she died with the grief. I always had the A.F that comes and goes and took flecanide 100mg twice a day which seemed to work for a long time with occasional times where I needed to go into hospital one where I was cardioverted in 2018 within a few hours of the AF. But most of the time I reverted at home and within 12 hours so Flecanide would work eventually. Thursday I woke up three hours late for my pills in the heatwave here in Gloucestershire with an attack. I thought it would calm down within 12 hours and usually a cold shower sometimes works and various other things so I relaxed and sat it out at home. By the evening it seemed to go into a very fast regular best which I had never had before around 120 and then morning 120 regular then lunchtime back to irregular so by the time I had an ECG at the doctors.they said it was Afib and couldn't capture the regular fast moments a few hours before. After the doctors decided to be brave and go into A and E as had it 32 hours without a break. It was so awful as my partner couldn't come in (Covid Rules) and I was distraught without him. I hated A and E and tried to keep as calm as possible but memories of my mum at hospital and no partner. I got wheeled up to an acute ward and wired up but was calmer as the ward was very caring and other people with atrial in there. To cut a long story short I was in for 48 hours but in that time I had conflicting advice from the doctors. I had a lovely doctor (very handsome! which helps!) He had every faith to get me back in rhythm. But after fluids and magnesium and then the next morning a different doctor on duty he gave me more flecanide (150mg dose) which then a cardiologist ran in to my curtains and said you should never have given her that it's dangerous now as we are seeing that Emma (me) might be in Afib or Aflutter sometimes but we arent sure about Aflutter or it dipping in and out of the two or it could just be a regular heart occasionally instead of Afib but a fast one. He took me off Flecanide and said to go cold turkey on it and wrote a prescription for 250 micrograms of digoxin to take one at night at 10pm from now on and changedy bisoprolol 7.5 to 10mg. I was put on a blood thinner too. Then the next half an hour I got told that although my heart was still clapping away to ring my partner and go home and be collected. I feel I was rushed out and didn't feel safe to come home. Once home I have had the three worst days of my life I feel like the worst AF but all the time and breathless and orchestra in my chest. No improvement on the digoxin and it's day 4. I'm told it takes 7 to 14 days to feel better. I felt like I was going to collapse the other night so the paramedics checked me out and said I wasn't in flutter I was in fast AF. They hinted I should perhaps never been taken off Flecanide and should have increased it and not on digoxin. The doctor only had a vague report from the hospital to say I might have a cardioversion in a month but I feel so so unwell..I can't carry on.the only food thing is my heart has gone from 130 to roughly 109 and hopefully the digoxin will continue to drop further. At the doctors it even went to 90 on the ECG..but still Afib not flutter..I can't help thinking my cardiologist wouldn't have me on digoxin at all and I don't think you can convert with digoxin and I can't cope for another 28 days! Anyone have any experience similar? I can't help worry that if it isn't flutter sometimes is it a new fast heart and something has gone wrong although developing flutter as a new thing isn't nice either but I'm convinced my first nice doctor in hospital was correct and he said my heart was alternating from Afib to fast normal. Them Afib. I don't think anyone knows and I feel I got discharged too early. So sorry for such a long message!

[Buffafly]

Hello Emma, I’m sorry you feel so bad and confused (doc’s fault, not yours!) Of course I can’t give a medical opinion but I can pick up on a couple of points based on my own experience.

I have once been in hospital with chest pain and a fast heart rate which was diagnosed as several things including AF, heart attack, atrial tachycardia etc. I was immediately taken off my medication propafenone which is in the same class as flecainide but after an angiogram I was put back on it plus diltiazem to prevent tachycardia. Later I had an ablation and was told not to take propafenone again as it may not be safe for me. Last year I had a long episode of AF and eventually went to A&E and was given a huge dose of digoxin to slow my heart and later I went back into NSR. Apparently the theory is that slowing your heart gives your sinus node a chance to wrestle back control and it seems to work. I take diltiazem regularly and take an extra small dose if I go into AF and my heart gradually slows until it flips back. So hopefully that will happen to you. 109 is not really very fast though I’m sure it is very uncomfortable - my HR was 168 last time I went to hospital and it usually goes up to 150 at first. I hope that is a bit reassuring for you.

As you mention your cardiologist you might call his secretary and tell her how you feel in the hope he might review your case?

I feel for you over your nightmare visit to hospital, I think it takes a while to get over the trauma 😰 which doesn’t help but you should gradually feel better, best wishes 💜

[JaneFinn]

Hi Emma, I’m sorry I have no wisdom on this at all, but just wanted to send sympathy for what you’ve been going through- first of all in how your AF originally started, with all the stress and grief, and now for this horrible situation.

If I were you I would most of all need peace of mind that i was on the best course of treatment - because right now it sounds like they haven’t given you much cause to feel confident in it. I think Buffafly gives great advice about ringing your cardiologist’s Secretary and asking if he can review things for you?

Really hoping you get the support you need and feel better soon. J x

[wilsond]

Hi...oh how frustrating and confusing for you.

Not much to add to Buffaflys reply except that I have had almost the same personal experiences with your mum and subsequent AF and also with Flutter after starting with flecanide.

I'm of the opinion that you would feel better if you had confirmation from your cardiologist that you are taking the correct medication in the light of the very confusing discharge and clash of opinion between A n E Drs. Might you ring his/ her secretary or your own Gp and explain how you feel?

Flutter for me feels like a fast whirring sensation . I have never been prescribed Digoxin ,even when I was blue lighted in with HR of 230+...was given flecanide intravenously in addition to oral.

Meantime ...try not to worry ovemuch( so easy to say I know ) things WILL calm down again

Best wishes xx

[CDreamer]

Sorry you have had such a miserable experience and feel so bad, it can be very upsetting when you hear conflicting advice from doctor’s - which is why I learned that going to A&E really doesn’t help, although my GP has sent me there on more than one occasion. HR of 120 is not considered that high although you obviously felt very ill and sometimes, some episodes can make you feel a lot worse than others. It often took me 5-6 days to start feeling myself again after such an episode.

Coping with AF, as with any chronic condition, is tedious, worrying, life limiting and infuriating! Stress is a huge factor, for which the NHS is unable to offer support generally and which exacerbates your AF so I wonder if you have any coping strategies for dealing with your anxieties such as slow, deep breathing? Keeping calm and coping with all those worry thoughts are key strategies so perhaps investigate some psychological interventions? The next talk on Surrey Arrythmia group is going to be from psychology because that is certainly what all AFibbers have to cope with - how to manage the worry and the stress of having something wrong with your heart, even though if you are told it’s life threatening.

Personally I’ve never been prescribed Digoxin and found that Flecainide worked for a while and then AF broke through so was inaffective. The trouble with hospitals is that you will see the on-call cardiologists rather than your Arrythmia specialists so I think that the Paramedics, who are often very savvy, may have given you good advice - ask for a referral to see your EP as soon as possible for a review of your treatment.

Let us know how you get on and know that support is always here.

Best wishes CD

I rarely had Flutter, but when I did it made me feel a lot worse that AF ever did.

[Tapanac]

Oh you poor thing. Firstly sorry about you losing your mum. So sad.

109 yes is perhaps a wee bit fast but it’s not too bad at at all. To Some people that is a normal. Mine at its worst was 240+ like a running stream going over big boulders. Acrobats in my chest. I was given a flecainide drip magnesium and potassium drips and it did eventually slow down.

I think you had a frightening time in hospital and the doctors should never had had a disagreement in front of you. That’s enough to frighten anyone. Again in my experience I had two doctors disagree over warfarin and Rivaroxaban so I know how you feel. Scary. I am on apixaban

What I would say is to get on to your cardiac doctor Secretary or if in any doubt call an ambulance and how you don’t get the same doctors

Worry doesn’t help afib or any heart problems. Good luck and know we all on here feel for you .

[meadfoot]

Dear Emma, I feel so very sad for you as this condition is such an horrendous and scary issue to have to deal with. I know from personal experience just how frightening it can be. I have AF, SVT and Atrial tachycardia and have heart rate of 259 beats per minute when in an episode which makes me feel absolutely dreadful and fearful.

Do you have an electrophysiologist who is on top of your case ongoing, if so and that wasn’t the cardiologist you saw in the acute ward then I would contact their secretary as a priority. My EP was far from happy when I had been in a couple of different a and e departments in other hospitals where they suggested changing my meds without contacting him. You really need to speak with your main cardiologist assuming you have one. If you don’t I would find a good one ASAP.

You need a specialist who either knows your case already or one who will give you a raft of tests to get to the bottom of your condition. If the cardiologist you saw on the acute ward is your usual one then I would either trust his assessment or if not pay for a second opinion if you can and feel you need quick attention or ask for a second opinion in the nhs which may be, during corona, quite a long wait.

Whatever your situation it’s your body and feeling so poorly isn’t something to just put up with, do you have a good GP in your corner. They may help smooth your path to getting the help you need.

I so feel for you and send a big hug. Let’s us know how you get on. X

[LindaDaisy]

I had a similar experience that dragged on for six months because of COVID. Not quite the same as yours though. I didn’t get sorted until I saw my regular EP at Papworth, but I had to go private. I’ve now had a cardioversion and feel so much better. Just keeping my fingers crossed it lasts a good while. Good Luck.

[Jajarunner]

I too had bad experience in A&E in March. Sent me home as a total invalid, unable to walk more than a few steps. Told to await cardioversion.... Still waiting.

I went private and he got me an emergency NHS cardioversion 5 wks later and an urgent NHS ablation 4 wks after that.

It's not right that I had to pay, but what state would I be in otherwise? Health is everything. It was the best £250 I ever spent! If you can possibly afford it, I'd try it.

He immediately halved my anticoagulents due to my bleeding disorder, took me odd digoxin and halved my amiadarone which helped straight away too.

Sorry not to be more helpful.

[emmap985]

Thank you so so much to everyone for your replies and they are all so comforting and helpful. I will get on to my cardiologist's secretary and chase it up this end as well as waiting for my doctor too. He is still waiting for my hospital notes a whole week later. I suppose my question to everyone is what is atrial flutter and what is atrial tachycardia? Can you develop those as an added arrhythmia problem aswell as the usually AF? I am so grateful for such a lovely kind group and feeling like I'm not alone at all and we are all in the same boat is so helpful and to be able to share stories. Thank you to all of you above for your kindness 💛 I can't believe some of your stories about the high heart beats. Mine is normally at 140 at its worst. But I wondered if this was a different type this time as it flipped between AF and another fast regular beat at home and hospital that I'm not sure if it's flutter or atrial tachycardia? Although in the end hospital said it was just doing atrial fib. Plus it was always at a heartbeat level of 120 which I've never had before.. normally 140 is the norm for me. Can you develop either from more heart problems? The regular fast one only lasted at home initially for a few hours then alternated to AF and the doctor in hospital kept saying my ecg results one minute were AF and the other times fast sinus rhythm he thought it looked like I was trying to get back to a normal heart beat. The other doctor said it looked like flutter on the screen sometimes so I was left confused. Now I'm home the surgery says my ECG is just Afib not flutter so they are baffled as to why I'm on digoxin as flutter is dangerous with flecanide but if I haven't got flutter? Who knows? It's confusing! I just think taking me off the flecanide and not upping it to 150mg twice a day and now cold turkey on that they just stopped it abruptly and then digoxin just doesn't feel the right choice for me. I was happily on flecanide 100mg for 4 years and maybe just needed 150mg twice a day from now on. Now I don't have anything except digoxin which says it doesn't revert as well as flecanide and it's dangerous in younger people. Since hospital I had the paramedics out as felt so so dreadful as if I was going to pass out.. I even felt worse than I do normally when it's going at 140 beats and the breathlessness and erractic heart beat felt terrible.perhaps I was feeling flutter at the start of this week,?..it certainly felt worse than atrial in the chest!! I suppose it's decreasing a little every day having been 120 and now 109 it must be the digoxin working. Although the orchestra in my chest is worse I recorded 85 to 89 beats on an Afib app today. Alot better. But they tell me to take digoxin at 10pm so later on in the day I feel terrible in the chest flutters etc again. I also sweat alot in AF is that normal? I sweat more moving around doing tasks around the house. The weeks leading up to this I was sweating much more in normal situations like at a garden centre or just walking around gently. Which makes me think have I damaged my heart alot as I stayed up alot all my life as a very late night person and could I have done some damage going to bed v late? I especially have been bad with late nights this year and could I have caused heart disease doing that? I would still get 7 hours sleep just maybe 3 am until 10am. I will be having more tests and an echo. I haven't had an echo in 3 years so can your heart change that much in that time? I am told that I have a large atrium (I think) or enlarged heart as I'm overweight and that my heart is stretched. What does it mean when it's stretched? I am trying so hard to lose the weight and before all this I was able to do keep fit easily but would sweat more than usual during Covid lockdown and the only change I had was the sweat and my left foot would be so much colder than my right but I put it down to circulation and the sweats possibly being perimenopause. I suppose the sweat and the lack of sleep worried me that I could have harmed my health but before this stubborn hospital stay I had had no atrial for a long time this year. Intact one if the longest amount of months without any problems apart from the sweating. My mum had mitral valve prolapse and also aortic stenosis and couldn't have a valve operation. My grandma died at 52 of heart problems but my mum carried on until 82 with COPD and permanant atrial from a younger age she was 53 when dad died so perhaps that's when it went permanant. I look back and think how did she cope feeling so breathless with AF and palpitations and also COPD. I hope if I have gone into permanant like her that I don't continue to feel this breathless and horrendous..but I'm also hoping I revert back to normal sinus rythmn in a month. I've never not reverted before this so it's a shock that they couldn't cardiovert me like last time in A and E last week. I also worry if I'm in Afib for a month continuously then I hope this isn't permanant and my heart doesn't get used to it and thinks I like being in Afib for that long . Afib begets Afib and if you revert in 12 hours it doesn't have a chance to get too used to it but a month of Afib is different!

I'm really struggling to cope and feel I am too poorly to live like this day to day. I am only 46 and think a combination of stress grief and obesity has contributed to this condition but also my mum had me 8 years later than my brother and sister and smoked a little in the pregnancy with me. She was trying to stop and I don't judge her. She grew up when it was the norm to smoke at dinner parties etc and I'm sure she told me she tried not to smoke with me in her tummy because she knew it wasn't good and she was nearly 40. I can't ask her the details now. Maybe she smoked a little but tried to stop. Whether that did any damage I'm not sure..I have a slight murmur and was born so tiny 4 pounds.8. She was a much older mum but in those days people weren't checked or nagged about things. I also worry genetically I will develop a valve problem like her. She needed an op much earlier in her life and then wasnt suitable for the valve op and only given a few weeks to live at the end. My Mum was so so wonderful and I feel I've lost my best friend 😪 They didn't operate when she first had damage on the echo so she died of Aortic Stenosis but she kept going for 17 years with COPD .. Doctors said her positive attitude was so amazing and considering she was widowed for 30 years and so sad without my dad I'm convinced she hung on to see my life. She developed atrial I'm convinced through a broken heart as my dad died at home of cancer on Boxing Day. I was only 15. Mum never got over her broken heart and from then on I dedicated my life to caring for my mum and was her nurse and friend in the last 5 years. It was stressful nursing her and I worried about her alot and the atrial starting from the stress and worry. Then through the grief it escalated again. Thank you again to everyone and sorry for such long posts! I think my long posts are a world record on here I would win hands down! 🤭

💛

Just so pleased as been trying to lose weight for so long but my heart pills slowed down my metabolism so my fiance always lost more than me even though we were on slimming world and sticking to it. Now my heart is trudging away faster than normal and has done for 7 days I've lost more than 8 pounds maybe 9 so this treadmill heart speed is actually got one benefit I'm finally losing lots of weight!!!

[bassets]

So sorry to hear you're having a bad time. I think the stress of worrying about and losing your lovely mum has had an awful effect. I was very stressed for 6 years or so before I began with AF and then got so worked up I had to do something or burst. I began a meditation course and that helped me to stay calm. Do you think this may help you? And losing weight will definitely help, so well done

[emmap985 in reply to bassets]

Yes I do meditation daily and reiki and deep breathing and I've not been anxious at all when I had parox Afib but now it's permantly thumping Afib I need to find ways to cope being so breathless and unwell. I can hardly move around the house it's horrible this feeling in my chest....hopefully the pills will kick in soon as this orchestra in my chest is more thumpy than I've ever had before which makes me think it could be flutter! I'm so chuffed I'm losing weight finally! Been trying for so long and only lose tiny amount and one good thing about a fast heart is you burn fat! Thabky oh for the advice I would love to do a meditation course I will look into it thank you 😊 and thank you for understanding it all !

[bassets]

Keep well, and try to relax and not worry. I'm sure you'll be feeling better soon.

[Equish]

Hi there. I’d love to help with wise words but I’m still relatively new to this. I just wanted to say that reaching out to this group is the best help we can get. They are marvellous. I hope you feel better soon. Sending my love to you x

[Lilypocket]

Hi

Has your cardiologist ever considered an ablation for you as you are young and it seems your condition is progressing?

I hope you feel much better - it sounds as if you have been through so much and you must be so stressed.

You have been given good advice and wonderful support by members who have had similar experiences. Stay in contact . I can't really help as I haven't yet experienced a non- self converting episode but wish you well and am sending you hugs and positive thoughts.

Take care.

[rosyG]

Hi Emma,

Sorry you are having problems Flecanide can cause other problems which is why they were being cautious if you were out of A Fib but had a very fast heart rate.I hope the rate is lower still and that you get sorted out