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Atrial Fibrillation Support

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Recently diagnosed

fairyfeathers profile image
58 Replies

Hi to you all. I have had a couple of trips to A&E end of June 2022 and beginning of July 2022 as an ECG at my GP surgery showed narrow complex regular tachycardia. I was seen by a Cardiologist who said I had Paroxysmal Atrial Flutter. I had bloods taken which were unremarkable" . I was prescribed Apixaban and Bisoprolol. Apparently my CHAD2DS2-VaSc score is 2 (I'm 71 and female) . My blood pressure is low I don't drink alcohol or smoke. Family history on my father's side of heart block. I have lung disease, IBS and chronic sinusitis. I could not tolerate Apixaban due to causing gastric probs so this was replaced with Edoxaban 30 mg daily and Bisoprolol was reduced from 2.5 mg daily to 1.25 mg daily as I could not function on the higher dose. I was told I would wear a 48 hr heart monitor which was requested 22 July 2022, I'm still waiting for this. I was informed that even if the heart monitor showed nothing I would be on my present meds for life. I was discharged and was given no information on way forward and have no further appointments.

I've seen my GP on 2 August who basically said see how you go. I had concerns about my low BP and Bisosporol meds and the fact I felt awful. He said he would chase up monitor and wait for results. I asked to be referred to an EP, My GP said wait.

Current:

The situation is that my A-Fib episodes are increasing my BP readings are showing BP this morning 86/51 pulse 79. On Weds I was in A-Fib for couple of hours this showed up on my BP monitor and yesterday felt poorly and BP monitor showed A-Fib for many hours. My GP when asked for advice about what to do told me to pop to A&E which is an hour away and I could not face 4 to 6 hour wait to be seen when I really didn't think it was necessary. Everything settled down eventually.

I really don't know way forward. My GP just says go to A&E if I feel poorly so have no support there. I have no appointments booked with anyone. Am I being impatient and expecting too much?

Thank you all for any advice and support.

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Teresa156 profile image
Teresa156

Hi Fairyfeathers,

Sorry to hear everything that’s going on with you and it must be very frustrating and worrying, especially after being newly diagnosed and waiting.

There are many people on here who are very informed and can give you excellent advice. I have PAF and am on 1.25 mg Bisoprolol, was diagnosed last year, after experiencing it for 10 years, so I know how worrying it can be.

Waiting for that halter monitor can take a while when you’re newly diagnosed. I think mine took 6-8 weeks last year, so I’m afraid 3-4 weeks wait so far, seems about right with the NHS.

You mention you have a BP monitor that is showing you that you are in AF? What are you using? Many on here either have an applewatch, or Kardia which can identify AF and other arrythmias so may be worth getting a Kardia at least to show you when you are in AF? You can also show your recordings to experts medics in the future.

If it all gets too much, you can ‘speed things up’ and make an appointment privately to see an EP ( usually around £200) but hopefully after your monitor comes through, you should ideally get an appointment with a cardiologist at your local hospital rather than going through your GP for Afib, as they are not usually experts in AF. Cardiologists are the ones too, that you can discuss your medication concerns with. It is probably the Bisoprolol that is lowering your BP so much. Unfortunately it all just takes a long time.

fairyfeathers profile image
fairyfeathers in reply to Teresa156

Hi Teresa 156. Thank you so much for your response to my “rantings”. Holster was requested 22 June so about 6 weeks so I have fingers crossed I will get one soon. Yes my GP seems anxious himself about way forward in that he is a little out of his comfort zone. I understand this. I have just bought a health watch and now need to get it set up this weekend (hubby is whizzy on all things tech so he can do this). I think I have had a problem for some time but ignored symptoms as I was full time carer to my old dad who has recently passed so I now have time on my hands to fit my health issues in. I will behave myself and try and calm down (I suffer with GAD so doesn’t help). I’m also a bit of a control freak and need a cunning plan to get on with life going forwards. So all advice will be welcomed and appreciated

Teresa156 profile image
Teresa156 in reply to fairyfeathers

Hi Fairyfeathers,

Thanks for coming back, It’s so difficult with PAF as they need to catch it on an ECG and I never could, for about 10 years until I went to the dreaded A&E.

I have found it very difficult to accept the diagnosis, so I know exactly how you feel.

Anxiety is unfortunately something I needed to get to grips with…it does get better, honestly. I ended up having some pyshotherapy talk sessions - with the NHS and that did help, but I was waiting over 6 months unfortunately for that, which wasn’t great. That might help if you haven’t tried that? Can also recommend “help for your nerves’ by Claire Weeks. A few on here have recommended her, the book is so good, it helped me a lot.

It’s worth getting that watch set up- and also if you can, do try and get a Kardia, honestly, cardiologists and EPs prefer them in the long run.

My GP is also like yours and thinks I should just get on with it, but is always reluctant to let me know ‘how’…I think those that have this condition are the only ones who understand.

Good luck - let us know how you get on.

You weren’t ranting by the way, but rant away! 😊

Teresa

fairyfeathers profile image
fairyfeathers in reply to Teresa156

Hi Teresa, thanks for the book recommendation I will look into getting a copy. I tried some CBT in the past and couldn't get on with it for some reason but the book you recommended is more my thing. So thank you.

Teresa156 profile image
Teresa156 in reply to fairyfeathers

I know what you mean about CBT- though was lucky to get a therapist who did a combination of CBT with more ‘talk’ in the end….I didn’t have to be referred by GP either, which helps. You can refer yourself….but the book is excellent. Written a while ago and sadly she has passed away now, but she certainly knew her stuff, All the best.

fairyfeathers profile image
fairyfeathers in reply to Teresa156

Thanks Teresa. My best wishes back to you too.

fairyfeathers profile image
fairyfeathers in reply to Teresa156

Teresa I sent you a message that seems to have disappeared?? Not to worry. I just wanted to know how you are at present? Do you have more good days than stressful ones? I hope so. My CBT person was a little annoying and I could not relate to what she was telling me to do so a none starter really.

Teresa156 profile image
Teresa156 in reply to fairyfeathers

Hi Fairyfeathers,That’s a shame it disappeared- I can’t see anything at my end, but of course, happy to help where I can. I do still have anxious times but nothing like I was last summer, which is when it came to a head. I had to take early retirement as I was unable to work because of the effects it had…it came like a bolt out of the blue and as you probably know anxiety makes afib worse - yearly episodes suddenly became monthly. Covid and all that has come with that, hasn’t helped and I’m sure there are lots who have particularly suffered because of that.

So I have learnt to ‘manage’ the anxiety when it happens - had some health anxiety thrown in too for good measure. The therapist taught me coping mechanisms and the way She explained some of the CBT has definitely helped me through. Talking through issues though especially and having someone listen and advise helped enormously too. I did have two therapists as after two sessions, the first caught covid, so I was given another who stayed with me through about 12 /15 sessions ( weekly) She was better than the first one 😊 so they definitely vary. Was your last through the NHS? I registered through their online ‘therapy for you’ service. You could try again?

I can watch my heart rise on my watch, just by thinking about Afib and worrying about the ‘what ifs’, so best to try and avoid both checking and focusing on looking ahead, try and remain as positive as you can - and not ‘look back’ which is what I try to do as much as possible. Not always easy, but getting easier as time passes. I fortunately haven’t had an attack since last November and being on the bisop, so I don’t know how I will feel if and when I have the next one, but I shall try and stay calm as that’s all we can do.

Also apart from all that, make sure all your vitamins are optimum, like vitamin D and magnesium especially. I was deficient in D 😳 and low in magnesium….I’ve been taking both religiously since January, and I’m certain that has helped enormously too.

Please feel free to message me again and hopefully it won’t disappear next time 😊

Take care,

Teresa

fairyfeathers profile image
fairyfeathers in reply to Teresa156

Hi Teresa, thank you for sharing your story which shows that your determination and strength has helped you manage your anxiety which in turn has helped you with your A-fib. You should be very proud of yourself. I was booked CBT thro my GP and the lady is one used by the Practice. I’m sure she is absolutely fine I just didn’t find her helpful to me. Perhaps I will look into it again?

It’s reassuring that you haven’t had an A-fib attack since last November which shows whatever you are doing must be helping, with a little help possibly from Bisoprolol😀

I started taking a calcium/Vit D/Magnesium supplement just over a year ago which was recommended by my Oncologist as a CT scan showed osteoporosis in my spine after my treatment. I stopped taking it a while back as just kept forgetting to take it, far too much going on in my life at the time. I started it again recently so fingers crossed it will help me.

Your story appears to show if anxiety can be calmed this in turn will hopefully calm A-fib, definitely something for me to work on.

Take care of yourself and thank you.

Teresa156 profile image
Teresa156 in reply to fairyfeathers

Hi Fairyfeathers,Good morning 😊 and I’m glad it helped…if you ever need to ask anything, do come on here as there are lots of lovely people here in the same boat, who understand.

I’m sorry to hear you have osteoporosis - hope you are able to start the treatment again. There are quite a few threads on magnesium on this site. Try and avoid magnesium oxide though as it does very little . I take magnesium taurate and magnesium glycenate daily, but there are others. They help anxiety too 👍

Take care,

Teresa

fairyfeathers profile image
fairyfeathers in reply to Teresa156

Thanks Teresa, I will check what magnesium I'm taking as think it's the unhelpful one. Win win if magnesium helps with anxiety too.

pusillanimous profile image
pusillanimous in reply to fairyfeathers

Are you checked regularly for Vit D.? I suffered a compression fracture in my spine due to osteoporosis. The bone density scan showed osteopenia in some bones so I was prescribed a bisphosphonate and a Vit D complex tab (Calciferal) because my Vit D was low. I took the Calciferal once a week, but after frequent blood tests, as soon as my Vit D reached normal level, I was reduced to one Calciferal tab a month, as my doctor was concerned about 'overdosing' on Vit D) I live in South Africa with plenty of Sunshine, but I prefer to sit in the shade to lying in the sun by my pool😀.

fairyfeathers profile image
fairyfeathers in reply to pusillanimous

Hi I had a dexa scan which showed osteoporosis in spine and right hip. I was advised to take Vit D and calcium tablets. I was not prescribed anything else prob because my body seems to react to most meds in a bad way. Like you I sit in the shade after successful treatment for skin cancer a few years ago. Wake up call I needed.

Auriculaire profile image
Auriculaire in reply to fairyfeathers

You need to look at the amounts of each mineral / vit D in any combined supplement . Often there is not enough vit D in combined supplements. If calcium supplements are used it is better to supplement with vit K2 as well. This directs the calcium into the bones.

fairyfeathers profile image
fairyfeathers in reply to Auriculaire

Thank you for this information I'm a bit concerned as I take a supplement which prob does not have required levels of Vit D. It does have Vit K2 so that's good.

Lovetheoutdoors profile image
Lovetheoutdoors in reply to fairyfeathers

I was low in magnesium and vit d when I had my first known episode of AF back in Feb 2020. After several episodes caught on my kardia I haven't had an episode since June 2021. I'm on apixaban and prescribed pill in the pocket when I went to see cardiologist privately as I needed to talk and listen to someone who had the time to do this. Cost £150 but worth every penny. I know we shouldn't need to go this route but I'm glad I did. Never had to use pill in the pocket so far. Good luck on your journey dealing with this.

fairyfeathers profile image
fairyfeathers in reply to Lovetheoutdoors

Thank you Lovetheoutdoors for your response. It sounds as if many of you on this site saw someone privately to discuss your diagnosis and way forward. Prob the way forward for me too as our NHS is under so much pressure and could be sometime before I see someone. Pleased you seem to have your health under control now. What a relief that must be.

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply to Teresa156

HiGood advice.

I found from the Ischaemic stroke (m. type) doctors were hopeless just putting up the same med - more dose.

But I needed a drastic change and the CCB Diltiazem 180mg and Bisoprolol 5mg brought it down 105 H/Beats per minute.

Then I learn a CCB and BB needs to be separated day and night.

So I was reduced to 120mg D am and 2.5mg Bisoprolol at night.

Solved after 2 years 3 mths! Breathless and sweating profusely.

Now 123/72. with day 77-88 night 47.

Cheri JOY 73. (NZ)

Teresa156 profile image
Teresa156 in reply to JOY2THEWORLD49

Hi Joy,You have been through a lot, but I’m glad things are settling for you. Afib is so different, for all of us and finding the perfect medication can sometimes seem to take a while but when it’s found it gives such a lot of much needed relief.

Take care,

Teresa

I hope that by reading other people's ups and downs you can process everything going on. Welcome to the family!

fairyfeathers profile image
fairyfeathers in reply to jedimasterlincoln

Thank you so much, I'm feeling that this wonderful site and lovely people on it will become my "comfort blanket".

Threecats profile image
Threecats

Hi fairy feathers,

Welcome to the club no one wants to join!

Firstly, I'm sorry to hear about your father's passing. It sounds like you've been through a very stressful time, particularly as you were his full time carer as well. My sincere condolences to you and your family.

As for the little matter of AF😊 I was diagnosed last year after a couple of stints in A&E but had been having problems before that. Like you , I have also been put on Bisoprolol ( no blood thinner yet as not at the required age). I have also been a lifelong anxious type who craves order and predictability and so, when the totally random nature of AF came along, that seriously messed with my head!

You've already received some excellent advice from Teresa and there's not much I can add to that, other than to second her book recommendation. The Claire Weeks book is old fashioned but excellent and I, too, found it very helpful. It really does get easier to deal with these random episodes, I promise.

I had a holter monitor fitted last year, it took about two months of waiting but I also got a letter with an appointment to see the cardiologist at the same time as I received the appointmentfor the holter, so maybe that's what will happen to you. However, I see no reason why you couldn't call the cardiology department supplying the monitor and ask them wha the procedure is - someone needs to give you the results of the monitor and a way forward, merely saying "see how you go" isn't really on, in my view.

In the meantime, whilst you're waiting, you could perhaps start looking at what lifestyle measures you could implement that would help you. Certainly stress and anxiety are big triggers for episodes, as are the usual culprits of caffeine and alcohol for some. There is another excellent book I would recommend called "The Afib Cure" by Dr John Day. There's a lot of information in there on things we can do to help ourselves. Don't take too much notice of the intro - he paints a bit of a grim picture to get our attention, I think, things aren't that bad!

I spent the first few months cursing my luck for having developed this condition but, as time went on, I realised that, firstly, it could be an awful lot worse and secondly, maybe it is my body's way of getting me to finally take notice and deal with my anxiety, something I've been in denial about for many years! I am sure, in time, you will find your own way forward, too. This forum is a wonderful resource of information and support and, as you've already discovered, there are plenty of lovely people on here happy to listen and give advice where they can.

All the best to you and remember, there's no such thing as a daft question😊 TC

fairyfeathers profile image
fairyfeathers in reply to Threecats

Hi Threecats thanks for your reply containing lots of info and reassurance and your condolences . Yes, been stressful since 2019. My mum passed as I got diagnosed with breast cancer. Went thro treatment and radiotherapy which I had concerns about in respect of my heart as zapped on left side now in remission. My anxiety means I need order as I don’t cope well with “what ifs” and having no plan. Hopefully like you did I will get a letter when I have my holter fitted. I also do not tolerate meds well as I react to fillers in them, something my GP doesn’t accept! I will look at your book recommendation too. I will try and be patient about my A-fib journey and spend time dealing with my annoying anxiety issues. Thank you again

fairyfeathers profile image
fairyfeathers in reply to Threecats

Hi Threecats, how are you doing at present? Do you feel more in control of your A-Fib now? Anything you can share on anything that helps you which might be useful for me going forward at the start of my journey with A-Fib? It’s reassuring to me that your anxiety is in a better place for you now gives me the insentive to sort my issues out.

Threecats profile image
Threecats

Hi again fairyfeathers, I’m doing ok, thank you. It’s the unpredictability of it all that really messed me up. Eventually, I learned to accept that and, to satisfy my need for control, I looked to see what I could do - reading as much as I could to get a better understanding of what was going on was key, as was focusing on changes I could make to help myself. It all helped to make me feel I had a bit of control back in my life. I still get episodes, although they have decreased substantially since I was diagnosed with mild sleep apnoea and have started using a CPAP machine - took me months to get used to that, too🙄 but worth the struggle. I’m now slowly cutting down my Bisoprolol as I would like to go back to using it just when I get episodes, as I did early last year. Unfortunately, episodes increased over Christmas to every other day, so I reluctantly started taking it daily. That was before the sleep apnoea diagnosis though and as I say, episodes reduced drastically after that. My GP freely admits she doesn’t know anything about AF but she is happy to make a referral to cardiology etc. unfortunately they take many months to come through, hence I’m going it alone on the Bisoprolol reduction. I have a Kardia device to monitor myself though, so I can keep an eye on what’s going on - again, another way in my mind, for me to wrest back some control.

You have been through a major amount of stress with your father ( I lost my husband to cancer nearly 7 years ago now and I’m sure the stress of that and dealing with the aftermath tipped me into AF land!) I would suggest you give yourself plenty of time and space to process what you’ve been through and start making small, gradual changes. I do find my heart does not like sudden, rapid changes, whether that’s diet, position or anything else, slow and gentle works best for me but you may be different, of course.

I’m sorry, I’ve waffled on rather but I hope something of the above is useful to you.

All the best, TC

fairyfeathers profile image
fairyfeathers in reply to Threecats

Hi Threecats,Like you I dislike unpredictability as I’m a person that needs control and order with possibly a list or two thrown in for good measure. I read everything as I find it helps me process things. Knowledge is power. If I understand a topic it calms me and gives me some control.

You mention sleep apnoea. I find that interesting as I often wake up with a start to catch my breath, I’m hoping holter would show this up?

I asked about stopping Bisoprolol but was told a def no at this stage, it was just reduced from 2.5mg to 1.25mg daily to help with the side effects.

I’ve been thro a lot of stress in the past few years, like lots of people, I suppose that’s life really. But I haven’t been sleeping, I was extremely stressed with being on call 24/7 with my dad. The A&E Cardiologist used a technical term “you have burnt out” basically your body needs you to listen resulting in A-fib!

I am finding it so hard slowing down, taking my time to do things and I still write my lists

But will try to do things at a different pace as my body hates rush and stress so much at present. I need to listen to it!

So sorry for the loss of your husband.

Thank you so much for all the useful advice which I really need at present.

Take care

Threecats profile image
Threecats in reply to fairyfeathers

Hi again FF

I’m sorry, I missed your reply above yesterday.

Regarding your sleep apnoea question, no, I’m afraid the holter monitor won’t show this up directly. It will show any spikes in your heart rate, of course, but it won’t show whether those spikes were as a result of low oxygen levels. You would need to ask your GP to refer you to a Sleep Clinic for a home study to be carried out. I pursued that avenue as all my AF episodes had started during the night. I purchased a little ring device that monitors O2 levels and heart rate. That showed significant O2 drops during the night, hence the sleep study request. If you are regularly waking up with a start during the night I would suggest that’s something to look into, for sure.

As for your stress levels generally, I agree with the A&E doctor, I must say. I’m sorry, I didn’t pick up about your Mum passing, nor your cancer diagnosis and treatment, previously. All that in addition to providing round the clock care to your Dad?! Good grief girl, even Superwoman would be given a run for her money with all that to contend with! When I was caring for my husband during his final illness, it wasn’t providing the care that was wearing but rather, it was the being ‘on pins’ waiting for the next ‘happening’. My nervous system was in a state of hyper-vigilance that I found impossible to switch off for a long time after his death. I am sure you are in a similar place at the moment.

Something I did find helpful was going for walks. Not of the route march “must do my 10,000 steps” variety but more like ambles, really. It was hard to begin with, as my brain was telling me I must get on with it and get it done but I ignored that and made a point of slowing down and slowing my breathing too. I made it my mission to notice something different every time I went out.

Anyway, sorry, I’ve waffled enough for one morning 😊 I’ll leave you in peace!

fairyfeathers profile image
fairyfeathers in reply to Threecats

Thank you so much Threecats for your reply. It must have been so very stressful and upsetting coping with your husband’s illness. I can relate to being on edge all the time as my dad used to ring me at all times in the night and I was on call 24/7 so often had to go round and meet the ambulance at his as he suffered with heart failure. I am finding it hard to slow down now he has passed as it doesn’t seem the correct thing to do. I’m sure it will get easier.

My sleep thing. Think I’ll wait to deal with this at present. my GP surgery rang to say I’m in a queue for 48hr monitor as there is a backlog. I’m 6 weeks waiting so far and been told it will be another 3-4 weeks before I’m contacted to make an appointment.

I have just started slow walking round my village using a walking pole as feel safer. I’m sure this will help me unwind. I will concentrate on slowing my breathing rate down .

Great to have your support 😀

Threecats profile image
Threecats in reply to fairyfeathers

I use a walking pole too, I think they’re great. 😊 Glad you have at least been contacted regarding your monitor, that’s a start👍As for support, that’s what we’re all here for😊

secondtry profile image
secondtry

Recommend you make a private appointment with a cardiologist......less anxiety, more accurate information.

fairyfeathers profile image
fairyfeathers in reply to secondtry

Thank you for the suggestion. I will look into seeing a Cardiologist privately but my GP says wait for now as if holter shows what the problem is I would get a follow-up with Cardiologist anyway on NHS although he didn't know how quickly that would be! So perhaps get holter done and decision taken then as to whether to book a private appointment.

JOY2THEWORLD49 profile image
JOY2THEWORLD49

HiIn NZ I ring the Booking Clerk and remind them.

For the 2nd time referred back to specialist cardiac which took from Jan to Juy to have. But 24 monitoring or 48 hr they have to wait until they are returned and the last time I never saw the specialist after the last 2. The ECG yes but not the monitoring.

Bisoprolol did not bring down my H/R even at 5mg x twice day.

Do you take something else.

But now since December Diltiazem a CCB Calcium Channel Blocker does 180mg with Bisoprolol reduced to 5mg = a drop of 105H/Beats minute during day.

Twinked am Diltriazem 120mg day and pm 2.5mg Bisoprolol night.

I worried that my night rate is 47H/R. But this never changed although it kept my BP down day and night.

Now BP 123/72. 77-88 H/B minute. CONTROLLED.

Saw an Auckland Cardiac Specialist 3 weeks ago. He was straight up!

I am happy with your meds. You are NOW controlled.

You will have A Fib rest of your life. No Ablation for you. You have an enlarged heart chamber.

You will be taking your PRADAXA 110mg twice a day.

I agree take your 10mg statin if your cholesterol is over 4.

He said I discovered you have a soft Systolic Heart Murmur. Looking this up "it is an innocent murmur".

Your thyroxin is abnormal. I had Ca Thyroid so 4 mths after stroke had operation. I keep to 2.0-3.0 TSH Level but if it goes up I take a 150mcg the next day. So 125mcg Synthroid daily and 1-2 daily 150mcg.

I was specified as having a rapid, persistent H/R with AF.

Probably the 48 hr monitor will give the Dr a view of your heart workings. Also have an ECHO scan. Ask Dr for a Thyroid/Carotid artery scan. That's what showed a shadow on my thyroid.

cheri JOY. 73. (NZ)

fairyfeathers profile image
fairyfeathers in reply to JOY2THEWORLD49

Hi to you thank you for lots of info and suggestions. It sounds as if you are now sorted with your A-fib. Your meds are keeping things controlled and your Specialist is happy with you. I had full blood tests and throid levels normal. Would I still need a carotid artery scan? I was told Echo scan would be something Cardiologist would request if they thought it was needed. Basically I was told everything took time and to be patient. I'm trying to be.

Singwell profile image
Singwell

Couple of things to add to what others have said. How much of an issue is the BP? You said it's raising a bit now but looks like you're on the low side even from that. Is the low BP causing an issue? Reason for asking is that there are other rhythm control meds that won't lower your BP in the way that the Bisoprolol seems to be doing. Bisoprololis a rate controller and is the first go to when people are diagnosedwith AF. Sometimes a rhythm control medication is a better fit. For that kind of prescription you'd need to see a cardiologist or preferably an electrophysiological (EP). Can that be organised?

As for anxiety - many of us get it here and we all have different ways of dealing with it. The book Unwinding Anxiety was recommended by another forum member and helped me tremendously. There are some useful exercises in it that I still use on challenging days.

Image of book Unwinding Anxiety
fairyfeathers profile image
fairyfeathers in reply to Singwell

Hi, thanks for your helpful suggestions. My low BP is making me feel light headed and quite spacy so not a good feeling. GP says carry on with current rate of 1.25mg Bisp for now just be careful. I'm just on Edoxaban 30mg with it. He has asked Cardiologist if something else instead of Bisp as I've always had low BP, might be better for me but nothing heard as yet. I'm hoping Bisp can be changed as I'm like a zombie even at reduced rate. So I seem to have more questions than answers at present but I'm sure things will improve.

Singwell profile image
Singwell in reply to fairyfeathers

Have a look at the AFA site and download the pdf about the typical classes of medication offered for AF. Obviously needs medical advice but worth your while getting informed. Sounds like Bisoprolol doesn't suit you and there's plenty of other options.

fairyfeathers profile image
fairyfeathers in reply to Singwell

Thank you for the book recommendation, very helpful as I am determined to get a grip on my anxiety.

ETHEL103 profile image
ETHEL103

Hi.Its a bit confusing as you said you had flutter not a fib then you said a fib?? I thought I had a fib all through the pandemic and got myself a Kardia which just kept saying possible a fib.Actually after 2 years when they did my ablation in May of this year they on ly found flutter.I have since learned that Kardia does not recognise flutterIf you can get a private ep.I went to London nd hopefully he will put you on his NHS list which is what happened in my case.Good luck.

stoneyrosed profile image
stoneyrosed in reply to ETHEL103

Hi Ethel, I never knew Kardia did not recognise flutter. If you do get flutter does it show up as AF on the Kardia or does it simply not recognise it at all?

ETHEL103 profile image
ETHEL103 in reply to stoneyrosed

It always says possible a fib.Thats why I thought I had a fib and not flutter.I was confused as my pulse felt irregular and it seems I had flutter with ectopics and tachycardia too.No wonder the Kardia couldn't diagnose.Trust me to get an assortment lol.

stoneyrosed profile image
stoneyrosed in reply to ETHEL103

Lol ok Thankyou

fairyfeathers profile image
fairyfeathers in reply to ETHEL103

Hi Ethel thank you for your reply. I was told flutter by one Cardiologist then possible A-fib by another on my second visit to A&E so I've confused myself I think. Perhaps I should presume flutter until holter results?? I asked to be referred to EP privately when I saw my GP he just said wait??

Ppiman profile image
Ppiman

I was in your position in 2019. I assume you do mean atrial flutter (“AFl” - an arrhythmia of the right atrium that causes it to beat at a fast rate of ~ 300bpm and which leads to a regular heart rate / pulse in a fixed ratio of the atrial beat of ~300, e.g. 150bpm, 100, 60 and so on).

This is different from atrial fibrillation (“AF” - left atrium) which is a very fast vibration of the atrium that causes an irregular heart rate not always, but often, fast (tachycardia of maybe 120-180bpm).

AF is much easier to treat with drugs than AFl, I was told. I found it totally debilitating s my rate was stuck at 155bpm. The bisoprolol (I was given 10mg) was not at all effective and very hard work. In the end, I was given digoxin with a much lower dose of bisoprolol, which worked better. I was never able to work out what was causing me so much difficulty: the raving heart, the bisoprolol or the anxiety it brought on. I couldn’t even walk far without feeling like the end was nigh!

In mid 2019, I had a successful ablation at Leicester which stopped the flutter, but now I have some AF, mild tachycardia and lots of “missed” beats.

Steve

fairyfeathers profile image
fairyfeathers in reply to Ppiman

Well Steve it's all a bit of a mystery to me this Flutter/A-fib malarkey. My heart feels as if it's racing sometimes, then other times butterfly flutters. My husband has a stethoscope for non medical reasons, (mechanical engineer) and when he listens to my heart he says it's all over the place .... Racing then misses a beat starts up again at a different rate?? He is quite concerned as asks me if he should do CPR if my heart stops, I have told him might be a good idea but perhaps call an ambulance first! Cardiologist first trip to A&E said I had etopic beats?? I feel completely washed out no energy and started using a walking pole when out as felt safer with it! Perhaps I'm being a bit of a drama queen but it's all so new and confusing at present. Looks like Flutter is a less serious one to have?? I don't like the Bisp meds but hoping the experts can prescribe something else.

ETHEL103 profile image
ETHEL103 in reply to fairyfeathers

High dose verapimil 280mg was the only thing that controlled my rate.Tried everything else.

fairyfeathers profile image
fairyfeathers in reply to ETHEL103

I'll mention the med you mentioned to my GP and see what his reaction is.

ETHEL103 profile image
ETHEL103 in reply to ETHEL103

I may add that my gp started me on 40mg first then increased over a few weeks to 120mg slow release twice a day plus 40mg extra at night.

Ppiman profile image
Ppiman in reply to fairyfeathers

Hi FF. The ectopic beats are what I have most often - runs of them that go on for hours and seem worse with exertion. They are something everyone gets now and again, but in mine and your case we get them in droves! They are supposed to be safe and not to cause any issues, but they do feel uncomfortable and even bring on mild chest discomfort and a kind of mild breathlessness.

Atrial flutter (AFl) îs what I had in 2019 and it brought on tachycardia (in my case, a pulse of 155bpm). This was treated first by bisoprolol 10mg, then with bisoprolol 5mg with digoxin, finally by an ablation in June 2019.

Flutter is when the top right part of the heart (i.e. the right atrium) beats too quickly, but does so regularly (it should beat at 72bpm, the same as the bottom, but in flutter it beats at ~300bpm). The problem it causes it that it makes the bottom of the heart beat abnormally at a fixed ration of the 300bpm it beats at, so you end top with a fixed rate of, say 150, 100, 75, 60 and so on, with a stepwise change between each (unlike the smooth rise and fall of NSR - normal sinus rate).

Atrial fibrillation is similar but here the top left chamber of the heart is twitching away irregularly instead of beating normally. This affects the bottom chambers as AFl does, but, unlike that, causes an irregular pulse that can be at any rate, although is often racing.

As it's the bottom two chambers of the heart that matter most to our long term health (because they pump the blood to the lungs and body), the top parts are less "important" and if they are twitching irregularly (as in atrial fibrillation) or beating too quickly but regularly (as in atrial flutter), it's not life threatening in any way, but is uncomfortable and - when it causes racing - can weaken the heart's output and even make the valves leak a little.

Steve

fairyfeathers profile image
fairyfeathers in reply to Ppiman

Hi when I was checked at my GP surgery my pulse was 148 so they were concerned. I felt quite weird and as if I was going to collapse. My body just never seems at peace at present so am hoping I get some definite answers soon. I've decided I don't like my etopics at all!

Ppiman profile image
Ppiman in reply to fairyfeathers

You’ll need an echocardiogram to let a doctor know what your heart is doing and hope healthy it is structurally. If your lucky, a stress MRI will be given to produce a detailed look at the heart muscle and its function.

Steve

fairyfeathers profile image
fairyfeathers in reply to Ppiman

Hi Steve, fingers crossed I get at least one of these procedures. I am hoping the heart itself is ok and it’s just the flutter and etopics I need to get on top of. Thanks again for your support and helpful info.

ETHEL103 profile image
ETHEL103 in reply to Ppiman

Same here Steve.

Ppiman profile image
Ppiman in reply to ETHEL103

I sometimes wonder whether the ablation didn't cause the later problems, but more likely, whatever caused the flutter (never found...) also caused the later things. I likely didn't notice these when I had the flutter as that pretty much took over everything - my life included!!

Steve

TeaFree profile image
TeaFree

Hello fairyfeathers,

I'm sorry you have been inducted into the AF/Flutter club. It is always a bit of a rude awakening when one hits that medical level of significance.

Not least because it tends to call down a hotch-potch of standard medical responses.

These are mostly based on the thesis that no one dies of AF/flutter (which is fortunately mostly true, though heart failure is a thing), the risk is stroke. And that anticoagulation is often integral to preventing that (these days tempered by worries about bleeding - hence the CHADs balance-sheet).

But the somewhat outdated notion that it doesn't matter whether rhythm or rate is controlled also creeps in. This again is, perhaps understandably, because medics are concerned with death rates not quality of life.

I was diagnosed with lone AF in 2009 and, like you, prescribed a beta-blocker, despite my low BP and bradycardia, at first. Which made me feel about 90. I was 50. I have fought a running battle with AF since, including multiple cardioversions and an ablation (in 2014).

Naturally, one looks for a medical solution first, which is perfectly proper. And there is no way around getting access to the best cariologist you can afford to opine on your problem.

But be aware that the medical solutions can be very formulaic and also will be based on what no one can get them for prescribing, rather than necessarily targeted to you. And cardiologists are often not very good at interpreting blood tests. Whereas, you might look for signs there with the assistance of other professionals.

I don't know all the details about your condition and all your co-morbidities obviously. And I am not a doctor. However, your very low BP, IBS, anxiety and sinusitis would all intimate to me a possible low thyroid condition, which (like diabetes) is a known antecedent to heart problems.

My own recent experience suggests that GPs can be a bit lax about probing even elementary things like vitamins B and D (as others have mentioned).

Each of which, in common with e.g. magnesium, taurine, Co-Q10, L-Carnitine, D-Ribose and iodine, have important roles in supporting heart health.

Some people have enjoyed quite a turnaround in their condition by focusing on lifestyle and nutritional issues. Which is a bit of a silver-lining to the whole experience to my mind. Because it can prove a timely wake-up call to address some other latent health issues.

If you have low B12 and folate for example you will also certainly have high homocysteine. And elevated homocysteine is very bad in a whole variety of ways. A simple blood test available from your GP will identify this.

But, remarkably, I only had my first B12 blood test last year and was found to be very low indeed (so low my GP had a colleague interview me to see if I was quite compos mentis!).

Subsequently, by researching the heck outof my condition I have made great progress by adding N-Acetyl Cysteine (NAC) and Alph Lipoic Acid (ALA) to my supplement regimen.

Like 10% of all men, I have Gilbert's Syndrome (high bilirubin), which doctors are prone to dismiss but which intimates a problem with liver detox. And one of the root causes of AF/Flutter in the absence of other obvious morbidity is quite likely to be the high level of reactive oxygen species that the pulmonary vein shunts at high pressure into our left atrium. So, it is rather important that nothing interferes with detox and mopping up free-radicals.

NAC is a precursor to our master antioxidant, Glutathione (GSH), among many other things. And ALA helps recycle GSH. Besides NAC assists nitric oxide metabolism (nitric oxide dilates blood vessels in the heart, lungs (male parts) etc., which is also why e.g. nitroglycerine too had been a longstanding staple of heart treatment).

I have experienced numerous benefit from supplementing with NAC, including substantive alleviation of my AF episodes.

So, two things to conjure with really. First, just 'knocking the alarm off' (nice as it is!) would probably not be a good idea, even if there was any very certain route to doing this.

And, second, don't allow yourself to be overawed by all the unfamiliar stuff. Try to join the dots, and use the opportunity to get a grip, and set your broader health to rights as well.

fairyfeathers profile image
fairyfeathers in reply to TeaFree

Thank you so much TeaFree for your really informative reply.

My A&E Cardiologist did an ECG, I had bloods taken which were unremarkable, my medical history was discussed then recommendation of Holter for 48hrs. Anti coagulant prescribed after CHAD score with Beta Blocker. Basically sent on my way with reassurance I was unlikely to die from A-Flutter.

I asked my GP about supplements and his only concern was whether they would impact on my anti coagulant and beta blocker. I will look into the homocysteine blood test but don't hold out much hope of getting one.

You have given me lots of information on possible supplements to look into. I also take on board I need to be proactive moving forward to see what I can do to enable me to live the best life I can with this annoying health condition. So thank you again.

TeaFree profile image
TeaFree in reply to fairyfeathers

No problem. Just ask your GP for a B12 test if you haven't had one. It is a very common but underdiagnosed deficiency, particularly as we age and downplay organ meats, red meat, seafood and dairy in our diets, which are its ONLY sources (short of supplementation or injection). Don't wait over a decade like me to find out by accident!

As I say, if B12 is OK then you've ruled something out. Great! Because you really do not want a B12 deficiency. But if it is low you can count on homocysteine (Hcy) being high (the NHS are unlikely to test for it directly but such tests are available relatively cheaply by blood draw or finger-prick).

At least one person claims to have experienced total remission of AF through managing Hcy: endatrialfibrillation.com/. It is well worth a read.

btw be a bit circumspect about GP preoccupation with being 'in range', for almost anything. Just being in range is not necessarily optimal, let alone optimal for you. You will find screeds on sister sites about how e.g. some thyroid conditions and anaemia can be overlooked by focusing on the wrong indicators (like not looking at T3, free T3, reverse T3, and antibodies, for instance, in hypothyroid conditions) or by declaring victory when values are still really too low. B12 is a case in point - you want to be 'high range', and there is not much downside to overdoing it.

NAC has anticoagulant properties. It's another of the reasons I use it. So your GP will almost certainly encourage you NOT to take it, as you are on an anticoagulant already. You would too in their shoes. But actually this is all 'bombing blind from 20,000 feet'.

Of course you must take you GP's advice. But in time you will build up more hard data, knowledge and confidence of your own to contribute and take an evidence-based approach to the conduct of your treatment.

It is seldom clear what causes AF and flutter. The issues are systemic. In time we will come to appreciate the impact of personal vaiables like SNPs but, ironically, for now there is an understandable urge for GPs to prescribe as if we are all the same.

The one consolation of suffering AF I have found (it effectively destroyed my career) is that it is better to have an early intimation that something may be out of whack, and therefore have cause to look into it, rather than to carry on and have something even more serious creep up on us.

TracyAdmin profile image
TracyAdminPartner

Welcome to the Forum, I am sure all the members here will welcome you and offer advice based upon their own experiences. Have you visited the AF Association website: you will find a complete overview of the condition supported by helpful patient resources and videos : heartrhythmalliance.org/afa/uk or contact our Patient Services Team if you have any questions : 01789 867 502 or info@afa.org.uk

fairyfeathers profile image
fairyfeathers in reply to TracyAdmin

Thank you for the welcome and yes I have visited the very helpful website

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