I’m in permanent AF and would like to hear from anyone in the same position as to their symptoms. I don’t have palpitations but some days I feel very tired and out of sorts. I also sometimes feel some tightness in the breastbone. Does anyone have similar symptoms or something else. Is this my anxiety. I don’t test my heartbeat as if it was fast think it would make me more anxious.
Permanent AF: I’m in permanent AF and... - Atrial Fibrillati...
Permanent AF
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DouglasE
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Permanent afib is as much as decision as a condition. It means you are in afib all the time that you and your doctor have decided not to try and get out of afib.
The symptons you describe could be related, but no one can tell you except your doctor. Hopefully, at this point you are seeing a cardiologist and ep, who would be best to manage things.
You mention that you don't test your heart rate, however that could be important information to best optimize your treatment. Doesn't mean you have to test it all the time, but you should know more or less if it's normal or high. An uncontrolled high heart rate over time can cause damage to the heart.
Jim
My GP told me I was permanent AF when I asked him. I am not under a cardiologist. I’m taking anticoagulants digoxin statins and isorbide monitrate and just been diagnosed with antidepressants. I feel rubbish today but think it’s the antidepressants. I was reaching out more to find out what other permanent AF people’s symptoms were as I don’t know what to expect.
Hi, I wrote a long reply but lost when I went to look for your age. I am 78 and was told recently (by a cardiologist) that I was in permanent AF, however when I went for the prep for a a cardioversion my arrhythmia had changed to one with frequent ectopics, and quite often my heart beats normally. Cardiologists are not all up to date with AF and GPs are generally woefully ignorant, but don’t admit it (mine does 😀).
You need a second opinion, if not two, one re the ‘cardiac syndrome x’ (now known as microvascular angina I think) and the other for AF. Your AF treatment is certainly not satisfactory. I read your previous post - no wonder you’re depressed, you’ve meekly accepted a completely negative diagnosis. I hope you’ll now question your diagnosis and treatment.
Best wishes ❤️🩹
Thank you for your reply. Getting a cardiologist appointment can’t be easy. I’ve had numerous ECGs which always showed AF so suspect that’s where the diagnosis comes from I also had an echocardiogram following which was discharged from the hospital. Like you say I’ve meekly accepted everything.
I agree about docs not knowing everything. In the perfect world, everyone would have access to Heart Centers like the Cleveland Clinic where docs can teach each other and are challenged by students. I went once (from NM to Cleveland by plane) and was given great info: ablation not appropriate. I just saw my cardiologist who may be the best in NM. She had forgotten that I have blockage in a carotid artery. When I asked if it had progressed, she immediately ordered a follow-up scan which should have been ordered prior to my visit. And she added a potassium test to my blood test because I recently started Losartan Potassium which can raise potassium levels too high. Neither test would have been ordered if I hadn't basically asked for them. Good news: she didn't hesitate to add them and both tests can occur ASAP. BTW I am wondering if my carotid problem would have been caught if I didn't have afib onset.
As I mentioned, "Permanent afib" is not really a condition but a decision not to restore normal rhythm anymore. Unfortunately, GP's are not qualified to make that decision.
At this point, you want to see an electrophysiologist (ep). They are cardiologists with extra training in afib. Even though your GP may call it "permanent", an ep may not call it permanent and in any event would have treatments available that a GP, or even an ordinary cardiologist would not.
Jim
You might find that it's the Statin that's making you tired. It can play havoc with the digestive system and with sleep patterns. I gave up the Statin and chose to instead implement Roy Taylor's diabetes reversal plan (I'm not diabetic), which quite frankly, has transformed the way I feel and sleep. Obviously don't take this as medical advice but I would recommend getting a second opinion as others have suggested.
A lovely person called JeanGenie?! May be able to help you. I may not have spelt her name correctly but she’s on this site and has been for a long time.
It sounds like you have slow AFib? - where you resting pulse doesn’t go sky high?
I have a friend in permanent Af and she says the worst thing is the tiredness,
Thank you for your reply. I’ve not heard of slow AF Energy levels are awful and trying to adjust is not easy.
Yes. I’m sure it is difficult. When I’m in AFib I have to sleep every third day, all night, all day and then all night again.
It’s horrible!
I read a few of the replies people sent to you and I agree.
GP’s knowledge is very general indeed.
Not bragging, but I think after three years of having this condition that I know more about it than her! (I’ve read and read!)
My GP said, it’s very common indeed and many people aren’t even aware that they have it!
I insisted on being seen by a specialist and then things improved.
I feel for you and everyone who has this condition
you really should be under a cardiologist, this isnt something that can be properly diagnosed by your gp, they can manage it long term, but you should at least see a cardiologist first
I'm so sorry you feel so down and stressed, Douglas. Diagnosis of AF is enough stress on its own but you haven't been well served by not being referred to a cardiologist or an electrophysiologist (cardiologist specialising in heart rhythms).
Unless your GP is unique he/she will know only the overview of AF and its implications for treatment and quality of life.
I would advise you to ask your GP for a referral to an EP (electrophysiologist) or at least a cardiologist so that your situation can be fully explained, meds reviewed and your concerns listened to. I was so down and worried after months of tests and faffing about after diagnosis that I paid to see an EP privately - best £200 I have spent so far.
Best wishes - remember to put yourself first.
hi agree with your comments, I too get fed up with no interaction of my GP and the Cardiology in my local hospital. Paid 300 and saw an EP who was aghast at my lack of treatment and said I was over medicated. Took me off Bisoprolol and Digoxin and replaced them with Diltiazim and I feel wonderful. Every patient is different and drugs affect everyone differently . You have to fight and insist on what you feel needs to be addressed
Hi Douglas,
I was in persistent AF (at least 6 months) until the past Friday, when I had a cardioversion for which I had to fight like a gladiator for months. I'm only 38, 37 at the time of diagnosis and I was treated like a lost case by my GP and private insurance.
GP didn't refer me to a cardiologist, 2 times they would tell me that they will refer me and then just ignore everything all together. I found this out because I had to ask the records for the insurance complaint.
I had to go to A&E for referral and at that point my echocardiogram was booked by the arrhythmia nurse that took me in charge. After a month and half that the GP diagnosed it. So 1.5 months wasted.
At the same time I paid private EP by myself and went ahead with insurance complaint and later Obundsman. I won against the insurance (2.5 months wasted) and I got my cardioversion. Now it's 4 days, I'm leaving like all the others, sleep a full night sleep and being fully awake and present during the day. I can't believe they would just let me go with this as if it was nothing.
My mental health took a massive hit by all of this, plus the fatigue caused by being in constant afib. How you are feeling is a totally understandable and a common response to this situation.
Please don't give up! If your GP doesn't refer you, go to A&E.
Phone the BHF nurse, they also helped me to understand my rights.
Hi
Well, I've been in permanent AF for several years now and it's fine! I hated the violent and frankly terrifying bouts of lone AF I had every few months for years leading up to it. Those really upset and depressed me and got me very down. They would last up to 36 hours sometimes and I could see my clothes bouncing around on my chest because the heart was beating so badly. Now I don't notice it. My HR fluctuates a lot through the day. I wear an Apple Watch so that I do know what it's doing and can adapt if I need too.
My medication is minimal, just an anticoagulant and a small amount of a Beta Blocker.
I am hypothyroid and that gives me far more problems and much more to worry about. I can't get that right. I was under a cardiologist but he retired and the new one saw me once after lockdowns and dismissed me from clinic. I keep thinking I should pay to see an EP at some point. But my focus now and for several years has been my thyroid because that really does ruin a life.
Try to relax a bit more about it. It is annoying but not dangerous as such. Loads of people have it and don't even know. Just get stuck into life and see an EP if you can. For more reassurance and medication review. Perhaps you will be suitable for an ablation. I'm too fat for one! Thanks hypothyroid!
Thank you for your reply which has helped. You mention you wear an Apple Watch to see you HR and adapt. Is the Apple Watch purely for health or does any Apple Watch do the job. When you adapt to the HR what do you do? Sorry for the questions but I’m trying to figure things out rather than ask GP as they’re too busy and it’s not easy getting an appointment.
I’m sorry you are hypothyroid. My friend has AF and this and she is very tired. However she manages to play golf. Something I haven’t done since my diagnosis as I’ve lost a lot of confidence.
I’m 71 so not sure about an ablation or whether I would want one going through the stress of it all.
Hi
All the current Apple Watches have the Health App installed on them and that means you can monitor your HR, oxygen level and run a single lead ECG report. You can send the ECG to your doctor if you want too. You can look back at records over the months and years. It also monitors sleep patterns for you. And exercise etc. I find it useful. I wish it could do BP but it can't.
I monitor my HR mostly because of the medication and dosage experiments I am making with my thyroid medication. If I take too much of that my HR can increase. It's hard to spot that with AF, but I can see trends. My HR varies a lot over the day and will spike up if I'm doing something that requires effort. So if I notice it's gone a bit high, I just pull back and have a rest before carrying on.
I still run a business, and my home (after a fashion!) and look after mum and am emptying her home out and preparing it for sale. I just have to go slower than I used to do. I don't think it's the AF that tires me. I think I'm used to that. It's the thyroid that does me in. This I think because now and again, in the past 8-9 years, I have briefly got the thyroid meds right for a moment and felt completely normal and been able to stride out over the fields again. The rest of the time I just can't drag my limbs around at all. Exercise is out of the question. I hate it. I loved to be active. But I was active with AF before this.
At 71, if suitable, I would think you should seriously consider an ablation. Loads of people on here to reassure you about that. You are certainly not too old.
The Apple Watch doesn't measure BP directly. I agree. I pair my iphone and Quardio and my BP comes out as one of my health measures. BUT I took my BP with Quardio at cardiologist's office and compared it to the cuff and bulb way used by docs. My docs measure was a glorious 120/something good, My Quardio was 138/something higher. Off my Quadio goes for recalibration!
I am in permanent AFib, following a failed ablation. My EP does not feel that further procedures are likely to work. (Without years on Amiodarone at least.) So I’m on rate control (Bisoprolol) and an anticoagulant (Apixaban). Anticoagulant due to being female and over 65.
I do get very tired, though it’s worst when I’m doing something fairly sedentary - I could just fall asleep in the middle of the day. If I get going and walking, then I’m not too bad. My legs run out of power going up hills and stairs. A brief pause and they are ok again.
I have stopped feeling the palpitations much - they were very evident after my ablation. I’m lucky not to get breathless.
It sound like you might not have been seen by an electrophysiologist - and that is always worth it. I don’t regret trying the ablation. My Apple Watch does show a decrease in its estimate of cardio fitness, but really I’m feeling not bad and just getting on with it.
It took me a while to accept the situation, and it is important to be sure of having both the anticoagulation and rate control. The rate needs to be controlled to prevent heart failure, and the anti-coagulant helps to prevent stroke. So hard to tell if the tiredness comes from the condition or the medication. I suspect a bit of both, but that’s life. I could have much worse things wrong with me.
I would say to pace yourself, but carry on being as active as you can be. For me that’s daily walks, though they are of varying length. (Sore back which seems to be unconnected to the AFib.) Keep other risk factors down as much as possible - I would say that’s down to eating sensibly and staying active. Also, make a fuss if you are worried and want more explanation or feel that anything is getting worse. Maybe golf would be exactly what you need?
ETA - only just checked your other posts, and it does sound like you’re feeling a lot weaker than I have done, which is rotten. I was really just listing how I am in permanent AFib - but it’s one of those conditions that affects everyone differently. Do try to see someone - even if it’s a private appointment with an EP if you can afford. (Around £200 - £250]. They could perhaps tweak your medication, because it all gets to be a vicious circle if you’re not able to stay active. (Not being a gym bunny, just getting out and meeting people etc.)
Your reply is very helpful. I’m struggling with confidence at present to go out walking on my own particularly as my legs can feel quite week. After having difficulties with Bisoprolol and now on Digoxin things are calming down. It’s early days with antidepressants (1 week) and hopefully once in my system my anxiety levels will reduce and I should gain some confidence.
Crossing my fingers for you. It really does mess with both our body and mind. I was an absolute mess in March, when told that it was rate control only. Very weepy etc.
When my husband isn’t around, I find those days harder to get up and go out. I always seem to need a carrot on a stick - walking to a coffee shop for instance. (What an admission!) Both my sisters had AFib - and both were at least ten years older than me. One kept going and seemed to just get on with life - though she had the advantage of her husband and grandchildren around. (Though sadly she passed away due to a brain tumour.) The other couldn’t seem to motivate herself to exercise, and ended up taking falls, and really being housebound. Sadly she stopped her anticoagulants due to a microbleed - not sure if it was medical advice, but her warfarin had gone haywire for a while, then she went on apixaban. We were at a distance and I really don’t know if she took her meds properly. Anyway, she had a massive stroke from which she didn’t recover.
All this was in 2021/2 - just before my diagnosis. It has left me very determined to keep moderately healthy and ‘active enough’. We have so many extremes thrown at us these days - couch potato or runner for example. Nothing wrong with a stroll to the local park or coffee shop - with cake in moderation 😉
ETA - for walking confidence, I have found Nordic walking really good - and it seems to help my back. The two poles really help. I don’t use them a lot, but there are often local groups that teach the technique and have walks.
Thank you. Like you I’m much better when my partner is around but he still works He motivates me to do things. I have a friend in her 80’s with AF and she plays golf on a buggy on a regular basis and lives on her own so does her own garden. I can’t compete with that and my depression is also debilitating.
Im sorry to hear about your sisters. I had a friend who stopped her AF medication and had a bleed and she now has to have care. Seeing that makes me determined to keep taking the medication.
breathlessness, edema and a cough were my earliest signs that I had gone from P/A/F into permanent A/F my drugs have been increased and I am now back in sinus with the aid of my pacemaker keeping a good beat. See your cardiologist, good luck x
Hi Douglas E
I have been in permanent AF for about 5 years now after a failed Cardioversion and not wanting an ablation (I am an 83 year old female)
My cardiologist agreed that if my heart rate was controlled and I was on an anticoagulant I should be fine. I never feel symptoms except maybe occasionally first thing in morning just before taking my meds. Eliquis, Digoxin and Diltiazem 360mg. Like someone else who replied I feel much better now in permanent but controlled AF than when I had periodic attacks which were absolutely awful.. if I get stressed I occasionally feel a little tightness in chest but try to rest and relax then. Hope this helps.
Interesting that you feel symptoms in the morning before your meds as that’s what I’m experiencing. I thankfully have a good nights sleep and wake up with anxiety and feeling of my heart racing. I’m trying meditation each morning to help with anxiety and depression.
hi again
I don’t get heartbeat feelings every morning Only really if I find I’ve been sleeping on left side. Try to always sleep on left side
Do you mean try and sleep on right side if you get heartbeat feelings when sleeping on left side.
Hmm, Jill. This is first time I heard about permanent afib maybe being better than non-permanent.
Our stories sound familiar. Is there a reason you don’t want an ablation? I have one scheduled but am uneasy about it. Thanks.
I’ve not considered it as I’ve not been offered one and would want to know more before I commit. I was only diagnosed in March this year so everything is still new to me. Good luck with your ablation.
yes, because of my age (83 now) and I don’t want invasive surgery. Also, I’ve read on this forum that many people have to have more than one to correct the rhythm. My cardiologist told me that so long as my meds are working and keeping the heart rate good, then I can live as long as anyone in sinus rhythm. I do have regular echocardiograms and blood tests. I can understand that for a younger person an ablation can cut out years of medication. You must go with the expert medical advice you have been given.
See my reply to Douglas E please as I clicked the wrong reply button.
I was diagnosed permanent AF this year. 19 years of AF. A decade in persistent. Been in AF since late 20s. Like you the palpitations weren't the main problems, especially once persistent. But yes have always experienced tiredness, dizziness and intermittent chest pain and shortness of breath. These symptoms all got much worse 2020 onwards, especially breathlessness, so landed back into the care of cardiology. 3 failed ablations last year led to the "permanent" bit and a heart failure diagnosis to boot but....now in NSR and have been for 10 weeks. Started 5 months after last ablation, during a period of coming off all meds ready to switch to new ones. Very unexpected and so far so liberating!
Take care and thank you for your response
Wife in her 60s went into persistent AF in March. GP did ECG which confirmed persistent AF with no other obvious issues. HR would be in the 120 when resting and she was tired and breathless all the time. Was referred and cardiologist did range of tests including echocardiogram to check no change in heart structure since last one done 4 years ago. All good,changed beta blocker to Nebivolol, and booked for cardioversion which were waiting on. Wife still struggles to walk anywhere as gets very breathless.
I’m not sure whether persistent AF is the same as. Permanent AF but thank you for your reply
Persistent AF is when a person has been in continuous AF for more than a week. Permanent AF is not until a decision has been made not to attempt to restore the heart to normal rhythm. I think sometimes GPs confuse the terms.
I was in persistent AF for 9 months until a cardioversion put my heart back into rhythm 3 1/2 years ago. It's stayed in rhythm so far ever since.
Has your GP explained why they haven't referred you to a cardiologist? It does seem we have to push to get the treatments we need sometimes, which can be hard especially when not feeling good.
I know I didn't feel good when I was prescribed digoxin for 2 months before my cardioversion. Other drugs have side effects that might possibly be affecting how you are too.
I hope you find some answers.
Thank you. I have not seen a cardiologist but was in hospital in March and from notes taken by medics cardiologist reported back to my GP. I was only seeing locums at my surgery due to shortages but we now have a new permanent doctor so I’ve been seeing him and hoping with the continuity of seeing same doctor will get a more consistent approach
After reading here that one of us distinguished betwn constant and persistent afib, I asked my cardiologist which I was in. She said neither. I was in permanent afib. I don' t remember how long it takes of afib to be in permanent afib but it was 2 or 3 years of afib.
Here is what the Cleveland Clinic says online: At least 2.7 million Americans live with atrial fibrillation. Researchers believe an estimated 70% of those cases are persistent or long-standing persistent Afib.
Paroxysmal atrial fibrillation occurs over fewer than seven days, on and off, and returns to a normal rhythm on its own.
Persistent atrial fibrillation means that an abnormal heartbeat continues for at least seven days straight.
Long-standing persistent atrial fibrillation lasts for more than a year.
Permanent atrial fibrillation does not improve with treatment.
Thank you for your reply. I was only diagnosed in March this year so that doesn’t meet your consultants view. There seems to be so many different opinions on this complaint. Hope you are coping with your permanent AF.
I've been in permanant AF for about 3 years now. I was lucky that my Gp caught the paradoxical AF in the act, and so booked me in for a cardioversion. Sadly there was a bit of a wait for this as covid was very prevalent at the time. while waiting, I want into permanent af, the cardioversion didn't work, so here we are. It's been mostly ok, but my long walks are a thing of the past, due to the effects of long covid and Sciatica more than the AF itself. Yes there are tired days, but I just take it easy,
I'm in permanent AF and have been for at least two or three years; at least that is when it was diagnosed as permanent. Suffered from AF since 1995. Suffered a stroke caused by it 3 years ago.
I must admit I argued with the doctor who insisted I was in permanent AF as I am relatively symptom free as the heart rate is well controlled with Sotalol, but I have some days when it goes up from 60 -ish to around 110 or more, regardless of resting. But then it eventually calms down again.
The major symptom as with you, is chronic tiredness and my ability to work hard (though I'm 77 anyway) is very limited and I have to rest a lot and take breaks. I get exercise every day, but my 45 minute walk leaves me feeling quite tired and with a tad of breathlessness.
The most alarming thing recently was a blood test which put my NT-Pro BNP levels (if that's the right name!) very high. This is a measure of certain blood proteins to indicate heart failure. But my doctor reassured me that AF causes these high levels anyway and that he had only asked for the test to set a 'marker' to see if it gets worse or better over time.
In your case I would certainly monitor your pulse and BP levels, if only to see what is going on. I use a conventional 'sleeve' BP monitor which can also indicate the AF (which some few mornings doesn't show up at all!) and a standard O2 levels/pulse rate monitor which is very good at picking up the days when the AF is marked and pulse is very high, Rather than it causing anxiety, it can be reassuring that pulse is regular and BP is at reasonable levels.
The times I get anxious are when the AF goes into a state where I can really feel it, but apart from that, being in permanent AF is not really any different than when I was in paroxysmal AF which happened a lot.
Of course, we are all different including in how we feel. I rarely take any alcohol now as it makes things worse and avoid certain foods which also trigger AF episodes. For me, regular exercise and taking magnesium supplements have been extremely helpful.
Thank you for your reply which is helpful. I have read about magnesium and bought some. I’ve just been put on antidepressants so leaving the magnesium until I feel better and see whether I can tolerate the antidepressants
Just on the anti depressants, I went through a very bad depressed stage after the stroke and got put on to fluoxetine (Prozac) which did help eventually, but do beware of the side effects ( if it is that or similar seretonin reuptake inhibitors). It can cause quite a few problems with digestion, appetite, diarrhoea and so on, which in turn affects AF. Keep it closely monitored with your doctor. At least they are quite easy to stop taking as they more or less reduce themselves in your system when you eventually stop taking them. But if the whole AF business is making you very anxious or depressed then they will probably be an aid in restoring your mental equilibrium and reducing anxiety.
Thank you. I’m on 50 mg of sertraline and only been on them a week. I’ve got to go back to the GP in 3 weeks. I have had an upset stomach and diarrhoea. I take lansoprazole to help my digestion in view of the other tablets I’m on. I understand it takes about 2 weeks for sertraline to settle system hopefully by which time the side effects will subside
The upset stomach is most likely because of the Lansoprazole. I was taken off of it and it became much better.
How do you deal with the painful indigestion caused by the meds if you don’t take lansoprazole
If your meds are causing painful indigestion your doctor should be thinking about prescribing something different. Lansaprazole gave me diarrhoea which of course doesn’t help AF at all because you are losing electrolytes. Try Gaviscon until you get seen by someone sensible.
My cardiologist responded, "magnesium" when I asked if any suppl might help my permanent afib. She thought COq10 might be a waste of money--but I continue to take it.
I agree with many others, you need to see a cardiologist. I have been in permanent AF for several years now. Originally they attempted to control the rhythm, using Amiodarone, but after several cardioversions and 2 ablations it was decided to control the rate using digoxin. This has been very successful. They originally aimed for a resting heart rate of under 100 but now my actual resting heart rate is in the70’s. I still feel fairly tired a lot of the time but this may be due to another condition, currently unknown but being investigated, which leaves me very breathless. I get short periods of sinus rhythm, which I recognise because I suddenly feel that I need to clean the whole house 😃.
.
Thank you for your reply. I was prescribed bisoprolol when discharged from hospital with an instruction to my GP to increase the dose to aim for a heart rate of 80. Due to difficulty with the bisoporol my Gp has put me on digoxin which I have coped with much better. Did an oximeter test this morning and it was 72 which is an improvement particularly as I had a fast heart rate when I woke up. Trying to adjust to everything and knowing what to expect is very hard.
You will have to pace yourself a bit. I tend to do something then take a few minutes rest and allow myself days when I just relax. I’ve found an hours afternoon nap revives me if I am flagging and going to bed at the same time each night. I’m a keen gardener and that is more difficult than it was but take advantage of any aids available. Was somewhat delist first but now able to enjoy life if now in the slow lane!
Initially I had paroxsysmal AF which I had episodes of - feeling terrible, like a box of frogs in my chest which was horrible & frightening. With tablets I managed it with the help of my cardiologist. Then it changed to persistent Af. I’ve always taken anticoagulants plus a beta blocker etc. Since it changed to persistent I still take a betablovker together with the anticoagulant and a blood pressure tab. This latest regime has been about a year now and I’m told the AF is well controlled and tbh I don’t notice it now. I also have a annual echogram-although bit later this year due to NHS queues!!! Some days I feel a bit out of sorts but on the whole ok. If you are concerned I would perhaps try to see a good cardiologist or electrophysisist privately. It’s worth the money if you can afford it to get your worries sorted & should give you peace of mind.
My two friends have this whereas mine is sporadic. One has more symptoms but copes well, the other very few except when walking up an incline when he feels rather breathless and has to pause
Anxiety is a major contributor to physical symptoms with this condition, I have become convinced, but I try to remember that even if it makes me feel like death is around every corner, it never will be: it's just the anxiety at work on my worrying mind.
What is needed in your case, I would suggest, is to prevent the heart from extended periods of racing, rather than stopping your near symptomless AF - and that's where beta blockers and similar come it to play. A small device like an Apple Watch, Wellue AI or Kardia can be useful, but not if they add to your anxieties, of course. I find the Wellue 24-hour AI monitor and touchscreen devices to be excellent.
Steve
Thank you for your reply. I use an oximeter occasionally to check my heart rate but I don’t use it often as I’m concerned it may up my anxiety. I will look at the wellies. I can’t wear a watch and not sure about the kardia as not been advised by a doctor yet
The Kardia and Wellue are similar but there latter has a unique (fit home use) free AI analysis function that gives a lot of interesting and useful detail which can be shown to your doctor. Mine was seriously impressed. i found that the Kardia is really only useful if you pay an extra fee of £10/month for its extended analysis. If you choose the Wellue, it’s far cheaper even ordered direct from their company website.
Steve
Good info ppiman.
Do you (or anyone) know if Wellue has a device that will monitor your heart rate continuously even while you sleep ? Thanks !
Yes - their 24-hour ECG monitor will do just that. I haven’t used it like that myself however.
Steve
• in reply tomav7
Hi,
I use an 02 ring by Wellue which I wear on my finger at night and it monitors my oxygen level and pulse rate continuously in the night. Able to download information into a graph or table and print off if needs be.
So the next day I can see exactly how my heart behaved during the night. I originally bought it as I have sleep apnea, an amazing device considering it’s small size.
In my experience of having permanent v paroxysmal AF, the permanent kind was easier to deal with as I was used to it I had no idea I had it and thought my tiredness was down to working / young family and any chest tightness or palpitation was anxiety caused by my busy lifestyle. After 4 ablations, mine now come and goes and it’s very obvious that I have it when it does start up.
Do you have a treatment plan in place?
Hi DouglasE. A few years before COVID I decided that I would remain in continuous AF. I made this decision after discussing it with a Cardiologist, and an Electrophysiologist. I stopped taking Flecainide. I had some debates with the professional regarding my Bisoprolol dosage. I have been on a dose ranging from 5mg down to 2.5mg (my current level).Fortunately the last Cardiologist I saw was a ‘heart rate’ man who did not want my rate to be too low.
I am listing some of the salient points from my life:
I am 81 years old and so I am that stage in life when it is not clear if cause is old age, or something else.
I walk around 5 miles once a week at over 3 m.p.h. including hills. I wear a GARMIN wrist GPS for distance, time and monitoring my heart rate (these devices are not accurate regarding the latter).
I swim 28 lengths once a week.
I have a routine of 15 YOGA postures that I do about four times a week, but I try and do meditation/relaxation daily.
The walking and swimming will leave me tired, but relaxed. The relaxation results in a battery re-charge.
Sometimes I feel breathless if I get up after kneeling, or crouching.
Stress is a threat especially if it is ‘up close and personal’. I can get chest pains, feel tired, and very uncomfortable.
I have found breathing control is fantastic for controlling both heart rate level, and stress. It is not immediate and does require discipline.
I monitor my blood pressure and heart rate from time to time, sometimes forgetting for some weeks.
I take Apixaban, and a couple of drugs for blood pressure.
The biggest risk in my decision is the statement, ‘AF begats AF’.
I have also decided to have no invasive surgery unless really necessary.
You have made the correct choice to get information, read, and discuss about the various options open to you. AF and drugs affect us all in different ways. Amiodarone for me was a nasty drug, but worked. Flecainide worked but made me dizzy causing me to faint once. I had an ablation for Flutter, but I am now in Flutter again (probably within a year of the operation). My AF symptoms were not as bad as the drugs. Good luck. TerryW
Thank you for your reply which is helpful. I do meditation every morning for about 30 mins which I feel has helped me. Although I’m now on antidepressants as apart from AF diagnosis in March I have retired from a stressful job and feeling isolated. I had two fall’s which resulted in the AF diagnosis both falls were backward so my confidence in walking has been affected. I’m 71 and had an active work and social life enjoying golf. I need to get this life back and finding it hard at present.
Douglas, totally understand the feeling of wanting your life back. I am the fall "queen" too many to list, last one a bad one, as soon as i was "recovered" diagnosed with AFib. Still hard to walk, use a walker but progressing to cane. Have been going to PT for fall prevention, I find I am more confident now, have better muscles and learning to walk "properly" at 78. Please look into PT it might help you too. Keep the faith,
Thank you. What is PT?
Physical Therapy. Can help you with balance, walking "properly" etc.
Thank you
What a concise list! I dont know all the drugs. Are you on an anti-coagu. lant? Keep on keeping on.
On anticoagulants statins isorbide and digoxin a real cocktail and my digestive system has been dreadful so prescribed lansoprazole to counteract them. It’s a pity pharmaceutical companies can’t sort out side effects beforehand but we’re lucky to have meds that help to keep us alive
Maybe after you check if the antidepressent helps, and then check out magnesium, you could check out foods:
mayoclinic.org/healthy-life....
Probiotics are foods or supplements that contain live microorganisms intended to maintain or improve the "good" bacteria (normal microflora) in the body. Prebiotics are foods (typically high-fiber foods) that act as food for human microflora. Prebiotics are used with the intention of improving the balance of these microorganisms.
Probiotics are in foods such as yogurt and sauerkraut. Prebiotics are in foods such as whole grains, bananas, greens, onions, garlic, soybeans and artichokes. In addition, probiotics and prebiotics are added to some foods .
The health benefits of currently available probiotics and prebiotics have not been conclusively proved.
However, side effects are rare, and most healthy adults can safely add foods that contain prebiotics and probiotics to their diets.
(Please remember pickled foods like sauerkraut are typically high in salt.)
Hi Cholla3. I am on Apixaban which is an anti-coagu. I am persistent so I will'fight the good fight' for as long as possible, but I intend to grow old disgracefully! Stay strong! TerryW
Great attitude Tery
Hi DouglasE. I am sorry to hear about your feeling of isolation, and your struggles to get back to normality. Do not give up! Sometimes one just has to ‘hang in’, until the good times return. Keep persevering, look for a solution for you. Your message has generated a lot of support from this Forum. I do not know if you are in the UK. I will mention two things from my life. I did some volunteering, as a school Governor (this was stressful at times). Then I was a Business Advisor within the Young Enterprise programme helping teenagers learn about business ( this was a more selective choice for low stress, although I did lose faith in the future of the Human Race once!). I belong to the U3A (University of the Third Age). An umbrella organisation for the over 50’s with a number of different clubs within each branch. There is a gardening, days out, lunch, walking, history, discussion etc., etc. Group.
You have received lots of ideas, and suggestions from the people here. Take what is best for you, and use it to build on. You are still a Spring chicken! I started to feel the aging process when I reached 80. TerryW.🤪
Some people cope with being in AFib better than others. In my own case I cope when it’s not there and then feel mentally and physically bad when it is. It tires me and I feel as though I’m hungry which is due to flutter when AFib is around. I’m also breathless. My advice would be to ask to see cardiologist (if you are already on their list, phone their secretary). Whilst you wait, note down every question and worry you have for discussion when appointment comes through. Then, create your own pathway by asking to be seen regularly. I did this and cardiologist was true to his word and sees me every six months. Which is just as well because last time I saw him, two weeks ago, my AFib was in its fifth week. He has now put me on digoxin along with my Bisoprolol. He told me I would revert in a few days and I did.l 🤞I am also being referred for an ablation. Good luck.
Thank you for your reply. I’m going to see my GP in a few weeks and will press for a cardiologist appointment. I’m not sure with the current NHS situation how long I will be before I get an appointment. Interesting about being hungry and being in flutter I’d not heard that before. My appetite is not good but then sometimes I become extremely hungry
Hi Douglas. I have had AF for nearly 7years and went into permanent AF about 18 months ago. I had an ecg and ultra sound scan and spoke with a cardiologist following the results. He assured me I could carry on as before the only change made was that Bisoprolol was increased from 2.5 to 5mg. I also take Digoxin, Atenalol (I have had high blood pressure for years) and Apixaban all of which seem to work as my heart rate never goes up very high. I keep an eye on it with myFitbit watch. To be quite honest I don’t know I have AF now, gone are those dreaded episodes that drain you for a couple of days. I lead a normal life, try and walk every day, garden etc. I do feel tired at times, but don’t we all, I will be 80 next year! Best of luck and try not to worry, I hope by telling you my experience helps a little.
Permanent AF is an agreement between patient and medic that no further action will be made to get the patient back to normal rhythm from its persistent state. Persistent AF is the same as permanent AF just that patient and/or medic feel there's more that can be done.
Thank you for the explanation
What did the doctor say about permanent AFIB, do you feel the heart rate being fast? I would check it everyday, I do ! I have been in AFIB for 3 days now , most days I have ever been in AFIB!
I am in persistent AF. I have been under heart specialists since 2017 and only recently discharged to the care of my GP, I am on Apixaban, Digoxin and Bisoprolol. I have similar symptoms to yourself although I can feel the arrhythmia quite a bit. I have AF and also sick sinus syndrome due to an ablation I had in 2018, I was fitted with a pacemaker in 2021 but it had to be removed due to infection. I was originally in paroxysmal AF and only went into persistent AF a year ago. They wanted to do a cardioversion but pharmacy would not allow me to go on the antiarrythmic they wanted to use so this was abandoned. I do monitor my heart rate because I may need to have another pacemaker fitted but they will only do this if really necessary as it will have to be injected directly into my heart. So basically like other people have said you need to check out whether anymore could be done for you before you are left in the care of your GP. Once under a hospital you would also have access to the arrythmia specialist nurses if you had any concerns.
Thank you for your reply and hope all goes smoothly for you
what are the key heart rate numbers u look for regarding pacemaker? and Why did u need one? Thank u
Hi Douglas E.In permanent AFIB for eighteen months. It was tiredness if I need anything and out of breath as well.
Very fast resting rate controlled with medications.
Referred to "best cardiologist in town, Harvard trained".
I would prefer Cleveland Clinic anyday.
Doctor spent 20 months trying everything.
Medications helped and cardioversion failed twice.
Finally, he referred me to an Electrophysiologist and he took one look and immediately ordered a Pacemaker with defibrillator installed.
This helped a great deal but I still was in afib. Then a month later in April of 2021 he performed a Cryo-ablation procedure and that did the trick, afib was gone , when I woke up in recovery and has not returned. Normal sinus rhythm had returned.
Recently earlier this year it was discovered that I have PVC'S, (PREMATURE ventricular contractions)
I still have ectopic beats about 3 to 4 per hour and I don't notice them, but they show up in the data collected by my pacermaker.
So I am not a doctor , and Dr-Gohan is a nick name from my military days. I am retired and 77 years old.
I as a fellow survivor would suggest you fly to Cleveland and meet with their EP' Department. If that is not doable for you.
At the very least, you may want to consider finding a good EP closer to where you live. Good luck and know that you have choices.
All the best, Larry
Hi
In NZ my triage is not concerned with rhythm but H/R.
I an inclined to accept that. If your H/R slows then symptoms like sweating go. I forgot to mention that Metoprolol made me extremely breathless.
CCB Calcium Channel Blocker is my game changer.
Due to an enlarged back chamber no cardioversion, no ablation, no anti-rhythmic meds. It showed up in the eCHO.
cheri JOY 74. (NZ)
Hi
I was diagnosed with Stroke, AF (Rapid and Persistent) and Thyroid Cancer Papillary (diagnosed from a shadow on my Thyroid during a Carotid Artery Scan) in hospital.
No symptoms except for no energy then and sweating profusely on Metoprolol and PRADAXA.
I demanded a Heart Specialist as no follow up at 1 year 4 months.
ECHO ECG 24-hr Heart monitor.
Heart monitor showed 187 avge H/R Day. 47avge Night 2 x 2 sec pauses.
Changed to Bisoprolol but still uncontrolled at 156 avge H/R Day. 47 avge Night No pauses.
Disgusted when I said no QOL with no reply.
Referred by new Locum to private Heart Specialist. Requested all correspondence.
Put on CCB Diltiazem 180mg - too much dropped 105 in 2 hours.
In December 2021 changed to Diltiazem 120mg AM and Bisoprolol PM.
Controlled.
1 year later 88-96 dropped further to 60s Day H/R 47 Night H/R.
120-124/ 69. 60s H/R. 47 H/R Night.
We need to know your meds, your BP, your H/R preferably via 24-hr H.Monitor.
Thanx Joy. 74. (NZ)
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