I have a history of PAF, with one ablation back in 2016 but it has been quite well controlled with medication (albeit I don't welcome the side effects!) But I have now been in AF since 14 February this year following surgery to remove a tumour on my lower eye lid. I didn't have a GA but nonetheless whilst still recovering from the surgery they discovered I was in AF but because it wasn't too dramatic I was discharged. Since then it has got increasingly worse, I feel dreadful and my Kardia tells me, even when I'm sitting and trying to relax, my heart rate varies from 120 to 135 bpm. I feel exhausted both emotionally and physically (I have been doing some tough work in the garden but can only manage short bursts of it). A couple of weeks before the eye surgery I changed for Sotalol to Flecanaide, so wonder if perhaps I'd not been taking it long enough for it to do it's job. I have spoken to the Arrhythmia nurse a few times and on my suggestion she is going to ask the Consultant about me changing back to Sotalol - but, it just all seems to be taking so long and I feel very alone. The Consultant, at Exeter, is hopeful that I am still a candidate for a second ablation but I'm told the waiting list is very long. I just keep feeling I can't carry on any longer. So any encouraging words would be welcome. I hate to moan but feel really low right now. Thanks for reading this.
A bit of moral support needed - a vir... - Atrial Fibrillati...
A bit of moral support needed - a virtual hug?!
I’m new here Tricia so don’t understand everything but it sounds as if you’re going through a pretty awful time at the moment. Happy to send virtual hugs and hope things improve for you soon. Xxx💝🤗🤗🤗
Tricia, I'm so sorry you are feeling like this . You've had a double whammy with your surgery followed by the dreaded AF again.
Is your arrhythmia nurse aware of your heart rate? Has cardioversion been mentioned ,? I think you ought to get back to her and insist on some constructive advice regarding your medication. Don't be fobbed off.
In the meantime please don't exhaust yourself physically. Listen to your body. A resting heart rate such as you mention needs respect. I really think you need to impress upon your medical team (GP?) what is happening.
Do let us know how you get on
J x
Yes, she knows my heart rate and commented that, we need to get that down’ but when I called her today I really felt she was too busy to be bothered with me and said she would speak to the Consultant sometime this week. A cardio version hasn’t been mentioned. I’ve moved into a new build and am desperately trying to get the garden sorted out - I can’t afford to pay anyone even if I could find someone. I’ve almost done what I set out to do and so can begin to relax. Thanks for taking the trouble to reply. I’ve even investigated having a private Consultation but even with that I have had to just leave a message and wait for them to phone back! Thanks again. T x
Hi, I too am under RD&E. I was diagnosed last April with AF, have not yet seen a cardiologist, taking rivaroxoban and bisaprolol, have been waiting six months for a CTCA scan and seem to get fobbed off every time I speak to Arrythmia nurse, perhaps we have the same one!
It’s so frustrating isn’t it. I have even tried to get a private consultation at Exeter Health but they don’t even answer the phone, you have to leave your details and they say they will call back, I’m still waiting and as I am out and about I might just go in to Reception. All that said, I really can’t afford it but equally can’t go on like this. We will just have to keep reminding them we are here and won’t be silenced! Good luck. X😀
That’s all we can do! I actually live in Torquay, but was sent to Exeter, supposedly shorter list and better equipped, I am beginning to wonder now, Covid seems to be the excuse for everything!
Agreed, it makes me want to scream.....2 year’s on.....Get your act together and/or employ more staff! I mean that in general not really the NHS as their situation, along with Care Homes is somewhat different. Moan, moan, moan - I must have turned into that Grumpy Old Woman I vowed I never would. Ha, ha!
Sending hugs from Downunder. 🤗🤗
So sorry you are suffering right now Tricia and sending you cyber hugs. (((( ))))
I know it all can get too much for any of us sometimes but these things will pass. The last team I knew at RD and were Matt., Steve and Liz when I helped present there at a patients support day but that seems a life time ago what with the pandemic. I know that were very caring but equally boxed in by budget constraints and time allocation so yes waiting lists can be long. A DCCV (cardioversion) might help short term but is not without risk. You don't say what dose of flecainide you are taking so if well under the daily limit it might be helpful to discuss taking extra (up to max 300mg per day) to see if it will chemically convert you----.
another thing to discuss!
In the meantime try to avoid using the Kardia. You know you are out of rhythm and all it does now is focus you on your problem when you should be trying to distract yourself.
Good luck with the garden but do listen to your body. And stay well hydrated!!!
Thanks Bob. I am on quite a low dose of Flecanaide and enquired about increasing it but the nurse said that Matt Lovell wanted to know the state of my arteries before going down that route. I'm down for a scan, but as with everything at the moment it seems to be taking forever. I'm not a great Kardia user and am with you totally on it's use, it's just that sometimes I either think I just might have come out of it, or, just to check it isn't going too berserk. Is there really a risk with the cardioversion - I'v e always felt terrified about it. Perhaps message me privately, don't want to get other people panicking! I do try to listen to my body, at the moment it keeps telling me it wants to sleep! But these things have got to be done and I'm not one for giving up or giving in. Perhaps that's why I got AF in the first place! Hydration is a good point and something I know I'm not good at - I'll try to do better.
There are risks with anything but generally DCCV is low risk. People do seem to think of it as risk free but then I experienced a one in five million event and am now a little more cautious. I didn't win the lottery that week though either. lol
Scary and disappointing, in that order. Thanks Bob.
If you read all that you sign for on any consent form you wouldn't ever sign one. lol 😁
When I had my first ablation in 2005 my EP explained all the risks including death. I asked him when was the last time he killed anybody? He looked shocked and told me never so I asked him to put me on the list for the week after he did so I knew he would be extra careful. To my knowledge I should still be waiting.
I would think Tricia that if your body is telling you it really wants to sleep why not listen to it and sit down with your feet up and read an interesting or better still amusing book or watch something amusing and distracting on TV? Let the garden go for a bit until you feel better. It will still be there in a week or two. I know the feeling of wanting to get it all done and dusted but I find if I do too much it makes everything worse. I have to give in and go with the flow. I learnt that many years ago. I don’t think you can work through this in the way that you used to do . Your body has had a shock. A GA takes a while to get over so give yourself time. Deep breathing helps. Virtual hug.
Thank you - I think I needed to hear that. I've got just 2 more plants in pots I want to get out and then I can stop - except I've had an email saying I'm due to have more delivered but I'm hoping they will just be tiny and easier to 'tuck in'. I've just downloaded a new book on my kindle and can't wait to start reading that - so perhaps this leopard will change her spots! I will try so thank you for the sound advice. I do try to do the deep breathing and as you say, I'm sure it helps.
😘
If the plants are in pots all you need to do is put them outside and water them until you are ready. You are more important than new plants. The soil is too cold for them to relish being put out now anyway. They can stay in their cosy pots and if the nights are really cold pop them into an open box with bubble wrap or some sort of insulating material round the pots - but not the plants.
Aaaah Tricia - so sorry to hear that. I know they are inundated. Keep on trying to contact them both the Arrythmia Nurse & pushing for consultation. If you get nowhere then contact your Governor Representative. At the very least you need a review of the meds. The Arrythmia nurse used to have her own clinic on a Friday morning - if she still does, try get an appointment.
If the AF is breaking through there may a case for stopping the Flec?
I know how hard it can be when all you want is some care and attention. It’s come to a sorry state when you can’t get that.
Hi, I've never heard of the Governor Representative, tell me more (please). I certainly get the impression that they are absolutely swamped at the moment, but I just feel that after all this time and at the rate my old ticker is going, someone ought to take me seriously. As you probably know, I've been widowed for some long while and live on my own, so it can be scary and all get a bit much without a hand to hold. OMG, now I sound really sad! I'll keep on, and as you say get a review of the meds, the current ones aren't doing much to help.
Thanks for taking the trouble to reply. Tricia
The RD&E is a Foundation Trust it has to have patient representation on the Board. There are elected patient governors for every area. The governors can’t do much directly, except exert pressure at highest management level for improvements to services. The more we complain to patient governor representative, the more likely they are to exert pressure at Board level. You need to be a member of the Trust to be eligible to vote - there’s no cost & you get a lot of information when you’re a member so well worth joining.
This area is well known as a Red Spot for long waiting times.
I know from experience that arrhythmias take a much lower priority profile here because they aren’t considered life threatening. The staff do their best but they are fighting an uphill struggle so the more we can help improve resources, the better.
Here’s the link royaldevon.nhs.uk/about-us/...
If you are S Devon? - I’d contact Faye, she’s proactive.
Alternatively- you could ask to be referred to another clinic such as Bristol? Worth checking to see what their list is like?
Shouldn’t be like this!
Absolutely right, it shouldn’t be like this. I’ve just moved from Wales because of the dreadful health care there, so now I’m thinking ‘frying pan and fire’! Thanks for the link, I will certainly follow that through. I had my ablation at the BRI but I think things are now much the same there according to my friend who lives near there. Plus the ambulance response time is frightening these days; I suppose Covid really does have something to do with it unlike a lot of businesses etc who, to my mind, are using it as an excuse - hush my mouth, I mustn’t get started!
So sorry to hear Tricia and sending hugs. Hope you can get something sorted soon. As Bob said maybe enquire about a DCCV? You can always say no if you don’t want it but at least you will know the ins and outs. Take care. xxx
Thanks - good idea, perhaps the thought of it will shock me back into NSR!
Hello, Tricia. I hope that by now the HR may have settled and you are out of AFib.Were you told why the switch from Sotalol (which had been working) to Flecainide?
Also, what dosage of Flecainide and twice a day?
Finally, are you also taking a channel blocker for HR control (Bisoprolol, etc) with the Flecainide?
I also take Flecainide (Pill In Pocket) before straining myself and once I feel an AFib episode coming. Good luck. Saul
Hi, I changed from the Sotalol because I didn’t like being on it, made me feel as if I was living my life through treacle. But to be honest the flecainide hasn’t made things that much better. Yes, I also take Verapalil, not sure of the spelling, But I have read that it is actually not a good combination, so I don’t know but the chance to ask these questions would be good! My consultant is reluctant to increase my flecainide dose until I have had a scan of my arteries, I am on the list for that but it’s obviously a long list! Anyway I will keep battling on and hopefully get some improvement. Thanks for taking the trouble to reply.
Hi Tricia, Saul again.Verapamil is a calcium channel blocker. A search on the Internet says this:
"Patients with atrial flutter or atrial fibrillation and an accessory bypass tract (e.g., Wolff Parkinson-White, Lown-Ganong-Levine syndromes). These patients are at risk to develop ventricular tachyarrhythmia including ventricular fibrillation if Verapamil is administered."
accessdata.fda.gov/drugsatf...
You probably don't have the "accessory bypass tract" that is mentioned.
I take the 100mg Flecainide (sodium channel blocker antiarrhythmic) with 1.25mg Bisoprolol (rate control) before I exert myself or when I feel an episode coming on.
The Bisoprolol reduces the BP and the HR slightly, and is a little tiring, but I am on the lowest dose and you do get used to it.
I hope that you get to speak to someone and get back to NSR. Good luck. Saul
Oh bless you Tricia. It never rains, but it pours. You have had a lot to contend with recently and a house move slap bang in the middle can't have helped.I can't comment on the medication or procedures as I am not medically trained but I can send you the biggest of hugs and tell you everything will be OK. Hang in there!
Oh thank you. You’re right the move hasn’t helped, I’ve moved about 20 times but never ever has one come close to being as traumatic as this one, lost 3 Purchasers, solicitors ceased trading, lost the house I wanted to buy etc etc! I’ll get there but, your support and that of other members has been an amazing support. Thanks 😀
Youre welcome and good luck to you x
Oh dear, sorry to hear you are feeling so low. We have all been there. Keep making waves with your doctor and consultant for the attention you need. Sending you big hugs and best wishes x
Thanks. I know I’m not the only one to struggle to get reaction medically speaking. My heart goes out to those waiting for cancer diagnosis and treatment, or those in dreadful pain waiting for replacement joints. We just need to keep up the pressure. Thanks again. 😁
I think feeling sorry for ourselves is a type of mild depression and is likely not that unusual, although I have to say that I haven't found anyone else who feels that way. I get it now and then, and have for years, like a kind of embattled feeling brought on by health issues, where the world out there doesn't seem to inspire or cheer as much as it did or should. I get it more often than I'd like, and for no obvious reason except health issues. It just seems to hover there and settle occasionally, then lift just as mysteriously.
I think you need to get your heart rate down from those heights before you'll start to feel better, myself - if it is persistently at 130, that is. When mine goes that high, I take a tablet of bisoprolol which starts to work after about an hour and the rest of the day goes better, thankfully. In your case, switching to flecainide might well be the reason things aren't settling and that needs following up, as you are doing. I know doctors in the UK seem to prefer flecainide these days over sotalol, which is a much older drug. My tachycardia is only rarely linked to PAF, luckily, and I don't take either. More often I get to runs of palpitations with the racing heart, but I can't feel happy if I don't get it down to the low 80s.
Is your GP not helpful? He or she will have a long experience of flecainide and sotalol in many patients?
Steve
Thanks, I have a lovely GP, so could try that route. As for depression, yes I think we all get it to some degree. I always remind myself that we have to have bad days/times so that we can have good ones. Thank you for taking the trouble to reply, much appreciated.
My husband has afib . He went to ER when he first had it . He was in hospital for 4 days while they ran tests. They needed to make sure he had no blood clots before they did a cardio version and it stopped it. They put him on metoprolol succinate and a blood thinner . He got a bad flu and put him back in afib. They added Flecainide . Now he has had no afib for 2 months. You could ask your dr about the metoprolol and blood thinner. The cardio version was also very helpful. The blood clots are the most dangerous thing with afib.
Recently my symptoms became so bad, my BP was high at 150/111 and pulse racing 120-140 continuously. Beta blocker Bisoprolol increased to high dose of 17.5 a day and also had Losartan and Doxasozin. All taken at same time in a morning. The BP was coming down and the pulse dropping but spiking regularly.Got to the point I couldn’t walk more than a few steps without energy being zapped, I though this is it, I must be in heart failure or at best medication overload
Yesterday after 9 hours in A/E following BP drop to 69/52 (they agreed drop the Bisoprolol to 7.5 twice a day, stopped Doxasozin, and as I am monitoring my BP they said if it goes below a certain figure then omit the Losartan)
Following no meds for 24 hours I began to feel better even though the heart is still 130 in hospital, took just 7.5 Bisoprolol last night, slept well & this morning BP 118/88 and heartbeat 92 - this morning I can walk more, less dizzy, more energy
Just shows what drugs do to some of us
Hope they sort you out but I was advised not to over exert and listen to my body (eg don’t push it in your garden till you’re sorted) I’m awaitingCardioversion and Flecainide trial in 2 weeks
I know you're right - I've always been one for overdoing it but have always had boundless energy, so no problem, so now I'm finding it really goes against the grain to 'take it easy', not how I wanted to spend my retirement and covid hasn't helped, I just want to start really living again! I'll try to be good though because I don't want to totally blow the fuse, as it were!
😀
I'm wondering if you can ask for a cardioversion. Can you suggest that to your doctor? It's horrible you should be going through this.
I think it might come to that, I know people say there's nothing to it, but it scares me rigid - perhaps the thought of it might put me in NSR! Hopefully someone will listen to me soon and change the medication and I find something that works without too many horrible side effects.
😀
There's really nothing to having a cardioversion; many people on the forum, including me, felt absolutely wonderful after having it. It takes 5 minutes (not including preparation), you're lightly put under, and you suddenly wake up feeling normal again. This just might be the quick results you're looking for, instead of added or changing your medication. Whatever you decide, I'm sure it'll be the right thing for you.
Thanks for the reassurance. Fingers crossed it gets sorted quickly now but I’m still getting nowhere fast. 😘
Royal Papworth
Bit of advice please
Dronedarone for PAF
Feel like a bit of a Fraud
Sotalol
