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Are these AFib effects permanent

Afibflipper profile image
28 Replies

Over the last few months I’ve had the worst prolonged AF attack ever. The strength, the continuous speed (was 140bpm) that my chest hurt. I’m awaiting cardioversion but I have never felt so unable to walk and I am so tired I feel like I’ve had a horse tranquilliser (not that I ever have had 😆)

My beta blockers were increased and another BP pill added in (I am aware they cause fatigue but I cannot go any distance or pace without keep stopping.

I got an Apple Watch which shows they’ve got my resting heart down and the bp but still triggering AF (but now rarely feel it so the drugs are helping that) it does keep sending alerts that the AF is still paroxysmal but slow plodding walks runs heart at 115

I am so concerned though- is this how I’ll stay now even post CV and hopefully Flecainide - I’ve never been like this before or for so long (when sat doing nothing my head and body feel I could get out of the chair and skip off but when I do set off it’s a different story)

At late 50’s life has just stopped (I’ve had the AF since I was about 40 so is that now it?)

I was, over the last year, having horrendous menopausal issues, unable to have hrt but also due to the Apixaban I’ve had to come off the antidepressant (I was only taking the lowest starter dose which kept me level headed - now it’s tears of menopause over the stupidest things, inability to recall what I was talking about mid sentence together with the inability to exercise or stay awake - I just feel terrible (anyone else associate with this)

Tried to pull my socks up (metaphorically speaking ) but it seems their elastic has gone at the moment (still trying to joke all this off but it’s got me right now)

Any advice, I am doing all the mental health stuff and can get calm in the chair etc but this inability to exercise (no one has a crystal ball I know) just wondering if it’s just temporary

Thank you in advance

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Afibflipper
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28 Replies
CDreamer profile image
CDreamer

Oh my heart goes out to you! You have a lot to cope with and sounds like menopause is a big part of what you are going through. Are you receiving any help and support for that?Help has moved on a pace since I went through menopause so maybe someone with more recent experience will chip in, hope so. I think doctors are only just waking up to the affects of menopause and how to help us through. Someone recently suggested a book on how AF and cardiac issues affect women differently and I think menopause was mentioned but sorry, I can’t remember the thread.

All I can say is as far as AF is concerned I remember being in similar situation with barely being able to move and I came through, tough journey but now in a completely different place so I just hope you get that cardioversion very, very soon.

Afibflipper profile image
Afibflipper in reply to CDreamer

No real help re the menopause, had to go through about 6 different Antidepressants as all caused S/E & not tolerated - the one they took me off was almost the last one.Had to come of anti- inflammatory meds so pain is back ………

Sounds like you understand where I’m coming from (even my EP said I’m having a tough time)

Guess I’m feeling sorry for myself but it’s good to hear someone say they’re ok now (that thee is light at the end of the tunnel) and you have been a good help recently thank you

CDreamer profile image
CDreamer in reply to Afibflipper

Oh I remembered the book - Prof Angela Maas - A Woman’s Heart. Haven’t read but someone on HU recommended it in connection to Menopause.

Afibflipper profile image
Afibflipper in reply to CDreamer

Thank you I’ll look into that - I’ve been on a few of the meno sites but like you say many are just based around the usual symptoms and not the obscure but I guess it’s like medications/ interactions - can’t cover all bases all of the timeAs always thank you for your valuable assistance

Auriculaire profile image
Auriculaire in reply to Afibflipper

Have you had your thyroid function checked as well? Why were you unable to take HRT? This is the most appropriate treatment for menooausal symptoms not anti depressants. Oestrogen affects most of our bodily systems and the lack of it can cause all sorts of problems. Really hope you get your cardiversion soon . Have they suggested an ablation once you are back in NSR?

Afibflipper profile image
Afibflipper in reply to Auriculaire

Hi, would t give me hrt as CA risk in family and had a DVT previously, migraine and the overall risk factors that go and gynae said it wasn’t in best interest to put me on it 🤷‍♀️ Thyroid check recently was fine

As it was deemed most likely all the symptoms of tears flushes & so on were menopause/depression I took low dose venlafaxine 37.5 which did help but doesn’t go with the Apixaban so told to stop it.

Had 2 ablations, was told it’s an option but that it may end up retreating areas covered before so suggested CV as less invasive as last ablations left with pericardial effusion

Auriculaire profile image
Auriculaire in reply to Afibflipper

That is unfortunate . Did your gynae specialise in menopause treatment? Many docs including gynaes are still mesmerised by the 1990s studies that put the kybosh on a lot of HRT treatment. These have since been thought to have shown an exaggerated risk for cancer and thrombosis. Also many of the participants were American and taking Prempro - HRT produced from mare's urine. And many participants had started the HRT in their sixties long after their menopause was finished. Much more natural forms of HRT are available now and short term treatment has much reduced risk . There is new thinking now on the benefit of HRT but it is slow to get into the mainstream.

Afibflipper profile image
Afibflipper in reply to Auriculaire

Do you know I don’t know if they were specialising in menop’ - it was NHS referral when Gp said why don’t we ask gynae who may have more up to date knowledgeWhen I went they said they wouldn’t prescribe HRT and would only give a possible drug that would help with night sweats at the time but that in itself had unwanted side effects

I invested in a couple of fans and then a couple of years later came that tears of no reason and at most inappropriate times, work was affected, brain fog and then the AF capped it all - I’ll have to have another chat with the Drs (thank you)

Auriculaire profile image
Auriculaire in reply to Afibflipper

I think women should be allowed to say whether they want HRT or not - that it should be their decision having been informed of the risks. Especially if it is a short term solution . Doctors think nothing of putting people on drugs like statins for life which actually offer no quality of life benefits ( ie they don't make you feel any better and can have nasty side effects) and very little in prolongation of life benefits. This is especially true for women . But they cavill about providing a treatment that can radically transform the lives of menopausal women. I sometimes think they feel women ought to suffer from their hormones.

Afibflipper profile image
Afibflipper in reply to Auriculaire

I actually call them horrormoans now 😆 It’s true you can refuse to take something and on your head be it but, can’t ask for it to be on your head to try something you feel would benefit

Recently I came on here when my AF was the worst it’s ever been, they couldn’t get my heartbeat down so A/E got involved- jumped straight to an end stage drug that had horrendous side effects before trying anything else

I’ve never been so thankful of being allergic to a drug so I had to stop taking it - I had tho decided I wasn’t going to continue if that was the last of it I told them you are not poisoning me with this drug and then giving me an even sicker body to deal with because of the drug

My GP and EP agreed they had been way too quick to jump to that, terrified me in the process - had I not had BUPA cover I wouldn’t have got any of the in-depth investigations I’ve had - it’s so scary at times but some stuff gets signed off like smarties

CDreamer profile image
CDreamer in reply to Afibflipper

I had similar experiences with drugs which also made me very ill. It’s a constant battle and you need to know more than the doctors, pull up peer reviewed studies and put them under their noses and find sympathetic doctors.

What about parathyroid? Was that checked? When I was going through a lot of this stuff a group of very kind people pointed me in that direction. I was clear but the result was my GP suddenly became more curious and started tracking a lot more Biomarkers and with quite remarkable results. Even now I’m stable I’m learning because I can access the results through the NHS app, look at the graphs and correlate them with events. It is a detective trail - but you need to be the detective. Be the observer of yourself and present evidence. Qualitive evidence is just as acceptable as quantative, but sometimes you need to make your case and that is SO hard when you feel rubbish. Is there anyone who can help you with this stuff?

In Oct I caught COVID. I was blue lighted to A&E who did tests on the day but they’ve just come through on the graphs so the dots can be joined up. I am very surprised at just how badly COVID affected my biology and it’s not until you see the results in black and white. Not surprising I was in extreme AF - my electrolytes had dropped very suddenly like a stone - yet they still hadn’t given me an IV because they were slammed and I wasn’t a priority.

Afibflipper profile image
Afibflipper in reply to CDreamer

I’m getting a printout of recent blood later todayOver the phone I was told thyroid ok but for some reason unknown I have to repeat the bone/calcium in 3 months

I’ll look how close they are to the ranges when I get them

Isn’t the parathyroid T3 T4 can’t remember off hand - if so I know they took them!

Yes playing detective - I am also asthmatic and read a report that Clarythromycin can cause dangerous/fatal arrhythmia particularly in women! This has been my rescue pack so when I pointed it out GP agreed to change to another - it is rare but understood my concerns so forewarned is forearmed they say

Auriculaire profile image
Auriculaire in reply to Afibflipper

TSH,freeT3, and freeT4 are the thyroid hormones measured though actually TSH is produced in the pituitary to drive the thyroid . Do not accept " thyroid ok " . Get the numbers . If calcium levels are off then the parathyroid might be involved. My sister had a parathyroid benign tumour. She felt absolutely crap till she was operated on. She also had rock bottom levels of vit D . These were causing her to have brain fog and memory problems so bad she was afraid she was getting Alzheimers! When the vit D deficiency was corrected she said it was like night and day. She still felt physically knackered and had aches and pains all over but her brain function came back to how it had been. Have you had vit D levels checked? If you do not supplement they will be naturally low at this time of year.

Afibflipper profile image
Afibflipper in reply to Auriculaire

Thank you very much for that I will get a look at them laterNot sure they did Vit D!

Strangely I did have an MRI of my neck/thyroid last month as I had a neck lump - also had a nose/throat scope on the day - reported back as nothing sinister but that there is chronic inflammation of my tonsils

Ppiman profile image
Ppiman

Have you had a recent echocardiogram or MRI? I would press for that to get the reassurance I think you need that all is well other than with the arrhythmia. Your memory comment sounds like your mind is too preoccupied with anxiety and fears to have room for much else at times, and I can sympathise with that.

CVs seem to be rather ineffective in the longer term, so has your doctor considered an ablation? In terms of what the future holds, I suspect you will improve dramatically as your body (and mind) get used to things. The two people I know with long term AF both got "better" as time went on, with one of them now on his way to 90 and still doing rather well.

Steve

Afibflipper profile image
Afibflipper in reply to Ppiman

I did have one a few weeks ago - results returned over phone but getting F2F next week and considering the info in it I was shocked to get to late 50s and just find it out!!They found pericardial blood from previous ablation still there, apparently I have congenitally small chambers that as I grew they never kept up and so had to work harder to get blood an O2 round an adult! I also have a bridging artery which is kinked and I thought it would have been that causing the chest pain but EP thinks it’s the AF and the continuous speed it was running at and bumping round the chest

The increase in Bisoprolol to 17.5 as well as anti hypertensives have slowed things down but still spikes but I’m not feeling many of them thankfully

You will probably all know the feeling tho of Let’s go for a stroll and then oh I feel like I’m on that show “strongest man” and they’re pulling a car behind them (is how my body current feels)

Support on here tho is so good 😊 and lifts mood when reading true stories and not just text book info

Thanks so much and your 90 years old acquaintance is very inspiring 🏃‍♂️

Ppiman profile image
Ppiman in reply to Afibflipper

I think the key thing is to ask your cardiologist just what he thinks those bits and pieces regarding your "mean". Of course, he or she might not know (or have the time or inclination to tell), but I would press for that. Maybe take a little list with you into the consultation.

I suspect, though, that the things you have that are different won't mean too much to your future longevity as, from what I have gathered about the heart in general, it's quite a variable organ and many of us have differences that might make us alarmed unless we were a cardiologist who knew the consequences of things. I remember seeing a cardiologist once who described oddities in his own heart to me and firmly expected to reach old age despite all that.

Certain future changes can also be helped, prevented or delayed by drugs such as beta-blockers and antihypertensives, I gather, both of which protect the left ventricle (the key part of the heart) over time, even if there is no high blood pressure present. My own doctor put me on losartan for that reason as I have left branch bundle block which, apparently, isn't good with Afib. I didn't;t want yet another tablet to take, but took his word for it!

Best of luck with things.

Steve

Afibflipper profile image
Afibflipper in reply to Ppiman

Many drugs are inadvertently prescribed for one thing but then coincidentally found to benefit anotherI used to be on Candesartan then a rheumatologist found I had Gout - he said studies show that Losartan (both artans so work same but Losartan had been seen to slightly assist lowering the Uric acid levels

I can’t prove it worked as they also put me on Allopurinol

Yes we are all individual when it comes down to it and a source of strange new information at times (I and my family say I don’t do anything text book 😆) conundrum comes to mind

Auriculaire profile image
Auriculaire in reply to Ppiman

Memory problems are a well known symptom of menopause. It is more likely that this is due to falling oestrogen levels than anxiety. Your comment shows the all too common ignorance of the importance of female hormones to our wellbeing and the devastation that the often abruptly falling levels at menopause can cause. This does not happen with men who suffer a slow gradual diminution of testosterone . Unfortunately this ignorance extends to a large proportion of the medical profession who continue to dismiss menopausal women as being anxious or depressed and fob them off with inappropriate treatment.

Ppiman profile image
Ppiman in reply to Auriculaire

Well - I'd not agree on your use of the term "ignorance", but I get your meaning. ;-) Anxiety with AF is a major problem, as I understand things, in both men and women and is a major cause of memory issues. I would think that the menopause can create a wide range of issues.

Steve

Auriculaire profile image
Auriculaire in reply to Ppiman

Brain fog and memory issues are very common and described by many women who do not have afib. It is not helped by disturbed sleep resulting from night sweats. Menopause has been very much a taboo subject until recently and many women have been reluctant to come out with the debilitating symptoms it can cause as they fear they will be deemed unfit to do their jobs especially as it strikes at a time when careers can be reaching their peak . There is widespread lack of awareness ( maybe a more polite way of describing it ) of how devastating it can be because many women still opt to suffer in silence rather than insist on appropriate treatment.

CDreamer profile image
CDreamer in reply to Ppiman

I think what we can ALL agree on is that the affects of Menopause are vastly underrated, underinvestigated and under researched mainly because a vast lack of knowledge and because half the population doesn’t experience them.

Thankfully this is now starting to change. As Auriculaire states above many doctors are wedded to outdated thinking and that needs to change.

Menopausal affects on the brain are extreme and Bisoprolol on top of the other meds - I can’t imagine the affects of such a cocktail. And all prescribed with little or no idea of the affect on any individual. Really?

I have met women who had been committed by their husbands in collusion with their male doctor friends because of Menopausal symptoms. They had palpitations which the doctors dismissed. You heard of it in the 19C but I never expected to meet people who experienced it. It was extremely sobering so forgive us for feeling passionate about this.

I have AF, I get anxious but I never, ever demonstrated that to a doctor in the early days for fear of being dismissed as the ‘anxious woman’. Thankfully I then met my lovely, caring and quite extraordinary GP, sadly now retired, who took me very seriously and then said - oh you must be so anxious. Relief! He fought my corner with the cardiologists who dismissed my concerns about drugs and in the end, reluctantly, advised me to go privately.

Sadly on the matter of menopause and peri menopause there is vast ignorance.

Thankfully times are changing but old thinking takes time to clear the system.

mjames1 profile image
mjames1

Sorry you're feeling so unwell. Being in afib can cause some of your symptons, but so can the drugs you're taking to manage your heart rate while waiting cardioversion.

Maybe talk to your doctor about adding another rate control drug like diltiazem which you may tolerate better and which would allow you to reduce your beta blocker.

In situations like yours, my rate was controlled mostly at 100 or lower, both resting and with mild exercise, with around 120mg diltiazem and 25mg metoprolol in a 24 hour period.

Also, if your doctor feels you qualify, why not ask to try some flecainide now? I converted from a 7-day afib episode 3 hours after I took a single 50mg dose of flecainde.

Jim

Afibflipper profile image
Afibflipper

Thanks for your help, I’m back at the EP on Monday, had 2 ablations already over last 20 years - it left me with a pericardial effusion (thinks that’s right) from one of themHe said another ablation could be done but my only be covering old ground of previous treatments

He’s said he does expect the AF to return but giving the rhythm rate drug post CV will hopefully have more effect/benefit and I won’t feel as I’ll if it comes back if they get me stable

I will be armed with peoples advice and suggestions and yes the forgetfulness I’ve noticed my fatigue and talking to much drains me at the moment (they’ve found a way to shut me up 😂) I’m on Bisoprolol 17.5 which has helped me not feel the palpitations together with anti hypertensives, etc so yes drug induced probably a big part ( just never had this before or this bad) Thanks again and hope you remain stable too

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hi Dear af flipper!

It could be like my AF that AF immediately starts when you exert yourself.

Worse on Metropolol with Af controlled on exertion 186 average.

That was after admitted to Northland Hospital with stroke.

No quality of life..

At 1 year 3 months I demanded a Cardiac Specialist. No followup after a stroke! NZ.

She changed me to Bisoprolol which does not affect breathing - I had got breathless.

Af still uncontrolled dropped to 156bpm.

Still had to stop like you on elevation or prolonged walks - exertion or anything else I did.

Wrote to Cardiac Specialist NO QUALITY OF LIFE. WAS I A CANDIDATE FOR ABLATION? NO ANSWER.

I am now 73 and 2 years 6 months after stroke and 2 years 2 months post thyroidectomy and 12 lymphectomies. With 2 clear neck scans.

I went to a Private Cardiac Specialist who carried out a full history.

He put me on 180mg Diltiazem.

Too much my heart dropped to 51 and scary.

So worked with Healthline NZ ona Sunday and again on Wed with a nurse at Heart Foundation and balanced with Diltiazem 120mg a.m and 2.5pm Bisoprolol.

Now AF controlled to 93.

BP 123/70.

Great.

Also PRADAXA the best blood thinner reduced to 110mg twice daily instead of 150mg. Exertion rate and energy level better by some.

It is getting to the bottom of what is doing the energy loss to your body.

I see protein in my urine and want to know what is causing this. I had an op on 2 March but for a week have got off first OXY-NORM which is a OPIATE. Later all Panacetamol. So it's not that.

Meds that I am on Synthroid for thyroid, the abpve for heart and atvorstatin for cholesterol.

Also I take Doxycycline 100mg which I will get off once Post-op is done on 28 April.

Anyone got any ideas?

cheri. JOY

Afibflipper profile image
Afibflipper in reply to JOY2THEWORLD49

Wow you have been through it - my pulse was 140 constant for couple of weeks but do not know how bad you must have felt at 186!!!I feel lucky that my husband gets Bupa cover (dread him retiring just because we lose that and it’s been invaluable)

Thank you for telling us your journey and sincerely hope your recovery from the surgery is swift and glad things improved with the correct meds for you - keep up the PMA (positive mental attitude) - when feeling down the people on here have been very uplifting

Alphakiwi profile image
Alphakiwi

Unfortunately the side effects can be extremely exhausting. Look for a way of getting off meds. I have.

Afibflipper profile image
Afibflipper

Easier said than done I’m afraid, I’ve stopped a lot due to the apixaban but can’t re the beta blockers anti hypertensives etc - time will tell but so glad you’re ok

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