Permanent AF

[lindyloo59]

I have recently come out of hospital where I developed AF after a mallory weiss tear with complications due to warfarin. My heart rate goes all over the place as low as 50 as high as 170/180. I was taking 1.25 bisoprolol and digoxin 0.065 lowest dose. I stopped taking bisoprolol as I had no energy at all was breathless after going upstairs. I am still just taking lowest dose of digoxin til I go to see Cardiologist next week. Anyone else had this problem. Prior to this incident I was fit not overweight no smiker. I want to get back to what I was like before this😫

[cassie46]

Hi Lindy, I have permanent AF and to begin with my HR was all over the place (never down to 50 though lowest normally 75). I was on 2.5 Biso at first and digoxin, had to come off digoxin because of side effects, so now take delitiazem and 5 mg biso. I think it is early days and your Cardiologist will need to sort your medication. Are you asmatic or any breathing problems because biso will make this worse. You should really see an EP (Electrophysolgist) who is trained electrical heart problems. Others will be along to help.

Cassie

[lindyloo59 in reply to cassie46]

Hi Cassie no asma problems have had heart valvee replacement with no priblems at moment. How long did your af take to settle? Thanks

[cassie46 in reply to lindyloo59]

When first diagnosed I was emergency admission to cardiac ward - had heart failure as well. I was diagnosed with AF and was in hospital for 12 days so started drugs in there, so it took some time. It may be that biso is not for you so ask you cardiologist for a different drug - you need to get the right drugs and dosages so can take a little while. But still push to see an EP.

Cassie

[Hidden in reply to cassie46]

Hi Lindy loo59. Your post was very interesting to me as I have had several ongoing uncomfortable side effects from warfarin (Coumadin). I am having something called a Watchman Procedure this coming Monday (1/15/2018) which will eventu.ally get me off of blood thinners. Very excited to start the process of ending my relationship with this med.

[Buffafly in reply to Hidden]

Why can you not take a NOAC? Just interested.

[Hidden in reply to Buffafly]

Hi Buffafly. I assume your question re taking other AC's is for me. If not sorry for the confusion. I can and actually did. When first diagnosed was started on Pradaxa. Took it about a year and it caused almost daily stomach upsets but I just put up with it. Then one evening while walking my dog I tripped on a broken sidewalk and cut my head on a rock. It wasn't a bad cut as these things go but I bled like crazy;went to ER for stitches. As I was learning more about a-fib and associated meds I decided to switch to Coumadin because it was easier to control bleeding because of the monitoring. This fall was toward the end of 2012. Also coumadin had been around for years and quite a lotof info was available. At present, there are quite a few NOAC meds available and many seem to work well without many side effects. But as I get older I tend to trust newer drugs less. For me they haven't been around long enough for tried and true info. In the US there is a frequent tv ad that asks if you've had problems with (fill in the blank) drug. It is a law firm ad and,I quote "if you've taken this drug and had (whatever) problems call 1 800 BAD DRUG. I joke about this at times but I really have come to prefer meds that have a longer proven track record. Of course there are many new pharmaceutical advances and I've benefitted, but my trust isn't there. Plus I don't like the fact that these drugs have no tests to let me know if my clotting mechanism is at its best level for me. Also the less meds I put into my system the better I feel. It's my personal prejudice and I know many patients that do well on these newer meds. I would say to them. Don't be influenced by my personal likes/dislikes. Just work with your doctor and do what is most comfortable for you. An unrelated aside.I was raised by a mother who didn't believe in medicine always being the answer and I'm sure this has stayed in my brain through years of nursing. I think she believed, for instance, epsom salts cured everything but pregnancy (LOL). Thanks for asking. Take care, irina1975

[Buffafly in reply to Hidden]

Thank you. I was brought up the same, no painkillers, Syrup of figs or Andrew's Liver salts for stomach problems and cough syrup or lemon and honey for respiratory illness, no antibiotics (my father's edict). Sadly this had long-term effects on my health in the form of lung damage from undiagnosed asthma, septic tonsils and adenoids plus the syrupy meds causing dental damage, so I think it can be taken too far. However I do have a high pain threshold!

[Hidden in reply to Buffafly]

Hi Buffafly. And don't forget good old applecider vinegar! irina1975

[RoyM]

Hi i have persistant AF and i have had for two years...it doesn't really affect my QOL at all. My resting HR is mid to low 70,s but my HR CAN zoom up to 100-120 depending on exercise. My EP seems quite happy with that, luckily my heart rate drops back to resting very quickly when i stop exercising. I take 1.25 biso x2 daily and of course Apixiban. I would prefer not to have this condition...but at some stage i accepted I have AF and stopped trying to "cure" it got on with enjoying the life i have left and stopped chasing my tail in search of NSR.....life really is too short.

[Hidden in reply to RoyM]

Hi RoyM i think there might be a formula for how high our heart rate should go when exercising if we have afib. I know there is one for regular healthy people. But probably best to ask your doctor for numbers that suit you and adjust your exercise (time, intensity etc) to accomodate his recommendation. You're fortunate that at this point your resting heart rate returns so quickly. I use an indoor treadmill. I like having my own. I can walk short times more frequently, exercise on my schedule and wear what I like. Plus I don't run into so many people in my senior living if I'm in my own apartment. My senior living bldg has 200+ residents and saying 'Good morning. How are you today? 50 times gets old fast. And don't forget the hard-of-hearing so I have to repeat myself. But I've gotten off-track (Sorry), For my age and level of heart damage my electrophsiologist has said keep my exercise rate at about 100 bpm give or take. This works for me and I check it with my pulse oximeter. For those of you who are more advanced than me technologically I hear a fitbit is a good thing to have. So ask your doctor. Hope this helps. irina1975

[RoyM in reply to Hidden]

Thank you Irina for taking the trouble to reply. My view is we are all different and there is no "fit all " formula. Personally I listen to my body rather than rely on a formula. Even though I have AF i consider myself healthy, I walk, cycle, swim and travel the world. Sadly, fitbits are very unreliable when it comes to an accurate recording of HR when in persistent AF and can become addictive. I did purchase a walking machine but very quickly realised that I prefer walking in the great outdoors. Thanks for the reply and keep well.

[Hidden in reply to RoyM]

Hi Roy, It sounds to me as thouh youlive in a country that still HAS a great outdoors! My senior living is in a very nice part of Atlanta but we have a lotof crime here and for me when I;m outside (even loading groceries, for instance, I'm hypervigilant trying to keep an eye out for a potential purse grabber etc. Now that I'm older and use a cane I feel more vulnerable. Also areas are very built up and streets are always heavy with traffic. Atlanta is a very green city-sometimes called the city within a forest. And there are many beautiful parks with gorgeous trees. But they are not that safe. Life has changed in big cities re safety in apparently peaceful natural areas, I don't mean to paint such a dark picture but even if I am safer than I imagine, my mind thinks about what could happen so I don't enjoy being outside by myself.

[RoyM in reply to Hidden]

Hi Irina and thank you for your interesting response. I am 70 and live in a small town by the sea in the UK. I am lucky that the lake district is on my doorstep and should i need the facilities of a city or larger town then that is a drive away. Crime in our area is low but certainly not unheard of. I have the memory of a goldfish and regularly forget to lock my car and luckily up to now got away with it lol. I can remember a time in the UK when people didn't even bother to lock their front doors. I now understand why you bought an exercise machine. I also think arranging your later life care is great and very sensible. Healthcare here in the UK is very different to healthcare in your country. Although, the NHS is not without its problems. Thanks again Irina and stay safe. Roy

[Hidden in reply to RoyM]

hi Roy, Not to get too personal but in the 90's mysister met a man online who was born in Colonsay butlived in Cumbria>Can;t remember the village but Coombs comes to mind. I remember his house was at the endof a short road and there were sheep in the field across rhe road that could be seen from the living room window. Plus a farm down the road where we would get fresh eggs. They;re are divorced now but when I would visit I thought it was so beautiful. I wanted to retire there. What a place to live and so different from where I grew up. I never had fresh farm eggs before. I remember taking the train from the nearby town to shop and the station tea shop was called 'Chat and have a chew chew (sp?) I couldn't think of a more beautiful place to live. Travelled to small towns and remember seeing Castlerigg, among other sites. You are very lucky to live there.Well,enough reminiscing,thanks for the kind words. We do have a good healthcare system which, unfortunately our new presiden is changing things and not for the better. I'm happy my post ondeath and dying was so well received. The one thing about American heakthcare is that I bekieve we are too much into 'last-ditch efforts at the end of life. My mother died at home andI think, if possible, that is much more preferable that a hospital. More natural. Again, thanks for the support for my beliefs. Take care too, Burma (irina1975).

[Hidden in reply to RoyM]

Apologies lindyloo59 because we are drifting away from the original topic.

I'm not far from Roy and live in the Lake District (only just as the boundary is within walking distance) but I have a treadmill which I use most days. I got very timid after my last fracture - over the years I've had three out running or walking. I like the treadmill because it's safe, can be used when it's dark or if the weather is unpleasant or treacherous, enables me to hear messages left on the phone, saves me from meeting an unpleasant neighbour or stopping my walk to chat for far too long to all the rest or seeing a dead thing at the side of the road. It gives me an uphill walk (it's on a ramp) at the speed of my choice and at the end I know how far and how fast I've gone. The nurse at the surgery ticked me off slightly and pointed out that it denies me vitamin D and fresh air and the better sights and smells of the outdoors.

We have a delightful ancient route not far away and it's a bridleway not a footpath. It's worn down by centuries of usage and it's far lower than the fields on either side. It's much loved by motorcyclists so out in the country we sometimes suffer from the noise and lingering fumes of traffic.

[Billblue in reply to RoyM]

Top answer Roym. Electronic monitors unreliable with af I have same as you and just get on with life worst things out there than this.....

[Hidden in reply to RoyM]

Hi RoyM. Yourpost on QOL (quality of life?) got me thinking. Since I had my first a-fib episode in 2011 my thinking has evolved from wishing for a cure to just living with what is turning out for me to be a very manageable illness. For me, the question has changed from "not dying" to how do I want to live And die. By this I mean I want to have enough input into my health care to stay independent,keep my mind and brain functioning as well as possible and most important stay out of a nursing home. So I have begun to assemble papers for those left behind that are much more specific about medical care I do and do not want and what quality of life is for ME! Once I began to face the fact that eventually I WILL die, the important thing has become putting documents in place that care will be delivered to me the way I want. I saw a program on Public TV several months ago that really addressed this. So I made a donation and got this lady's book. It's called "I'll have it my way: Taking control of end-of-life decisions." by Hattie Bryant. Far from being depressing, it's a subject that faces us all and actually helped me make decisions that ease my mind. I don't know your age and this may not be a book whose time has come for you. I have had problems with the way end of life healthcare is practiced in the US so this book came my way. One of my big prejudices if you will -for me- is how patients are often treated in nursing homes. I want no part of them.In my opinion substandard and non-compassionate care are far more common than people know.I realized that for me the goal is living the way I want to -right up to the end. As you said-life is too short (to do it any other way.) Don't know if this is the appropriate response to your post but I wanted to share these thoughts. Thanks for reading. irina1975

[maxred1]

Interesting post RoyM. Sounds to me that you do not have AF. If all bliss, why are you taking the medication?

[RoyM in reply to maxred1]

lol if only I didn't have AF. People are very different when it comes to this mongrel condition. I have AF since 2009 and in persistent AF since May 2016. I am lucky that my AF burden is not great so I simply get on with life. I am taking medication for a) to keep my heart rate down to acceptable levels and B) to protect me from stroke. When I next see my EP Maxred I will mention to him that it doesn't sound to you like I have AF and ask him to re-check. lol cheers keep well and PS I don't re-call saying all was bliss lol

[Billblue in reply to RoyM]

Top answer again roym. Doom and gloom some people

[Robyncarmen]

Hi Lindyloo,

Hey I’m in Permanent AF have been now for 1 year.

My Cardiologist has put me on

Digoxin 250 micrograms (for my pulse)

Xaralto 20 Mgs ( a blood thinner)

I now take the Medication at night around 8 pm, I asked the Cardiologist if this time would be ok. He said yes. I do get tired on them but at night they work a treat as my tiredness happens while I’m asleep.

When I wake up in the morning i walk on the tread mill with energy. I’m great for the whole day.

The Cardiologist said to me do what ever suits you & it works.

I hope I have been of some help to you as living with AF when you first get it can be really daunting. All you want is your normal life back but that isn’t going to happen as we all know.

Cheers. Rob xx

[lindyloo59 in reply to Robyncarmen]

Thanks for your reply Rob. My husband is only on lowest dose digoxin will have to mention to cardiologist on wed that it isnt enough and heart is still racing. Perhaps would be a good idea for him to take it at night to stop been tired during day 😀😀

[lindyloo59 in reply to lindyloo59]

Has your cardiologist given you that doseage based on your weight please?

Many thanks!!

[Robyncarmen in reply to lindyloo59]

Yes Lindyloo it works for me & it keeps my Heart rate down to the mid 70’s which is great. I’m actually functioning normal. Life is good now taking my Meds at around 8 pm. He may need a larger dosage. The Cardiologist will sort that out.

I’m actually an Ambulance 🚑

Officer & im finding more & more people are getting AF.

It’s comforting for them when I tell them I have it & it’s lovable once you get Meds to sort it out

I had 4 different Tablets it the Digoxin worked for me

Who knows why.

My father had it from the age of 68, he died at 90 yrs of

Pneumonia at 90. Two out of my 4 brothers have it & myself. So it could run in the family so my Dr Cardiologist said.

Hope I’ve been of some help.

Cheers. Rob xx

[Hidden in reply to Robyncarmen]

Hi robyncarmen. 'New normals' can be goodtoo. irina1975

[Robyncarmen in reply to Hidden]

Yes I agree I’m coping with it well. Mind you the Cardiologist

Used to say I should have an Ablation but I was always a little nervous about that. I’ve been in AF now for 1 year & it apparently doesn’t work if it’s been that long.

Also a Cardio Version is the same it may work for little while then you revert back again according to my Cardiologist.

Here’s. Rob xx

[Robyncarmen in reply to Robyncarmen]

Items. Cheers. Rob xx

[Robyncarmen in reply to Robyncarmen]

Cheers Irena. Xx

I meant to say.

Rob xx

[01maxdog in reply to Robyncarmen]

That wasn't true for me . I had an ablation after 2 years and was in NSR for 2 years until a nasty chest infection popped me out and I'm now awaiting a cardio version to pop me back in

[lindyloo59 in reply to Robyncarmen]

Could you tell me did your cardiologist give you doseage of digoxin based on your weight please?

Thanks

[Robyncarmen]

Yes he did I’m only 55.5 kgs. I now feel like a new person it’s like I’m back to normal. I do get a little tired by night as I’m busy through the day but at 65 it’s a little expected. As I said I get on the treadmill most days for 15 to 20 minuites.

My friend takes Digoxin if he goes into Af totally different to the way it is used for me. It keeps my Heart rate down.

It stole his af after a few hours of being in it. It’s a pill in the pocket for him.

Cheers keep intouch & let’s know how you go. Hope I have been of some help to you.

Cheers. Rob xx

[lindyloo59 in reply to Robyncarmen]

Many thanks you have will let you know c

[JonathanPittsCrick]

Hi Lindyloo59,

If I understand correctly, your AF only started recently while you were in hospital for a stomach operation. This is really just persistant AF, meaning it doesn't stop by itself, but could still be fixed. You should have an echocardiogram and unless it shows a badly enlarged left atrium you should undergo cardioversion – an electric shock while under a brief anaesthetic – to return your heart to normal (sinus) rhythm. The sooner you do this the better the chance of it staying good. You should also take an antiarrhythmic (heart stabilising) drug for about 3 months afterwards to stop it jumping back into AF.

You could ask the cardiologist at the hospital to arrange these as soon as possible. In the mean time you could ask about diltiazem as an alternative to the beta blocker as it usually causes less breathlessness (in addition to the digoxin which could probably be at a higher dose). Your heart will not be coming to any great harm with the high rates but you are likely to fee quite uncomfortable until either the rate is settled or the cardioversion returns it to normal.

[lindyloo59 in reply to JonathanPittsCrick]

Hi thanks for imformative reply. My husband went to see consultant yesterday prior to appt he had an ecg which showed his heart eate in persistent af fluctuating from low to high. He was kept in hosp overnight to srabilize heart rate. He was taking digixin which they have stopped and prescribed a beta blocker called metoprolo 50mg twice daily. Had to have rrview with gp next werk. Cardio verdion was mentioned but only as a last resort. No choice of tteatment was given. Do uou have any views on this med? Thanks again

[JonathanPittsCrick in reply to lindyloo59]

Yes, beta-blockers are good to control the rate of AF if it is running too fast but because of the natural irregularity it can cause it to go too slowly at rest and this sometimes causes worse symptoms than the fast beats when active. Also the metoprolol can have other side effects, especially fatigue, breathlessness, poor circulation, impotence and low blood pressure, all of which may feel worse than the AF!

That is why I think trying cardioversion straightaway is the best option and the diltiazem + digoxin combination may be preferable if the beta-blocker side effects are troublesome (everybody reacts to drugs differently and some people get on with them fine).

[lindyloo59]

Hi could anyone help my husband has just yesterday been prescribed Metoprolol 50mg twice daily to lower his heart rate. Will this control his Af on its own or would he need to take another medicine to work with it. Any help would be appreciated.

Thank you

[Hidden]

Yes, I was originally given 2.5 mg to take as a "pill in a pocket" but the GP wanted me to take it every day. Starting at 1.25mg daily after a few days I was feeling so tired that I asked the pharmacist who sent me straight to the doc and I was told to stop taking them immediately! My heart beat went down to 50 or less. Sadly, the same thing happens when taking one 1.25mg as a "pill in a pocket" . As dosages are calculated for the average male, no wonder we women have problems! But I think we are all different and it would be an idea if the medical profession would realise this! I was always healthy and fit and not overweight or a smoker or drinker etc. It was a bout of shingles around a year ago that did for me!