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We Need Some Clear Instructions re Arrhythmia's

jeanjeannie50 profile image
69 Replies

Time and again members of this forum are confused, as to when they should seek medical advice, when they feel that their heart is not beating correctly.

All we really need is one clear set of guidelines (devised by experts) re our heart arrhythmia's, as to when we should sit them out, contact our GP, go to A&E, or call an ambulance. Now, I know that's not as straightforward as it sounds, but surely a group of EP's could get together and agree on a written guide.

Yes, I know it depends on exactly how our heart is beating incorrectly and how we are feeling ourselves, but perhaps a guide relating to good old PAF and more if possible.

At present some members say they were told to go to A&E if their heart rate goes over 100. Me - I say I was told to go to A&E if mine went over 130, someone else will then say they were told to only go if they felt ill with it and another that they sit it out regardless of everything.

Just what should we do? Are there any EP's, or Cardiologists reading this that can help.

What are the thoughts of members here?

Jean

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7164 profile image
7164

Jean

I was told in hospital after my cryo that I should not worry about the rate but how I felt. All so confusing especially for the new members of this unwanted condition.

Sadly I have learnt much more from you guys than the medics. Should not be that way.

Rod

jeanjeannie50 profile image
jeanjeannie50 in reply to 7164

Yes, I generally go by how I feel, rather than my heart rate.

In my early PAF days I would go to A&E pretty quickly, but back then any attack would make me feel ill, not to mention super stressed. I remember my youngest daughter rushing to A&E and looking tearfully at me lying on a trolley, hooked to a heart monitor and with an oxygen mask on. I thought I was at deaths doorway! It was so very frightening, not understanding what it was all about. Now I can laugh about it and am quite ashamed of the fuss I often made. Having had AF for 15 years, I now sit attacks out, certainly not wanting all that hanging around for hours in an A&E cubicle. Though I was often admitted to a ward where I'd spend several days until my heart rate settled.

I remember that fear well, as I'm sure a lot of others who write here do. So can certainly feel for those new to the condition. Yes, I've learnt more from this forum than anywhere else and I thank my lucky stars that a work acquaintance directed me here.

I think if my heart rate was over 120, I would certainly contact my AF nurse, no matter how I felt.

Jean

7164 profile image
7164 in reply to jeanjeannie50

Jean

I hope this finds you well🤞

Here I am again sadly.

9 months after my cryo the ectopics are starting again. Last four days not bad but!

As you would expect I am so disappointed and a little frightened again. Am I right that you have been through this and now live with the af? What is that like? I am so confused as to what to do? What are the consequences of just living with the af? Mine is usually very speedy and stresses me to hell

Sorry

Rod

jeanjeannie50 profile image
jeanjeannie50 in reply to 7164

Sorry to hear your news. My AF used to be fast, now I'm in constant AF it's usually around 80bpm, but to be honest I rarely check it these days. I feel fine, probably get worn out quicker than anyone else. Can do long hilly walks, just a bit slower now. I don't think I've ever had ectopic beats that I've found upsetting. Do you take magnesium?

Physalis profile image
Physalis

If I had gone to A&E every time my heart rate went over 130 I'd have been there three times a week. Even when it spiked at 200 I just accepted it as pretty normal part of the ups and downs. In fact I never went to A&E.

However, I would think it all depends on how bad you feel.

jeanjeannie50 profile image
jeanjeannie50 in reply to Physalis

I used to feel dreadful when I had my PAF attacks and was admitted to hospital many times. Didn't you feel ill with your heart rate over 130, did you not get extremely breathless and tired? There were many times when I would struggle to walk from my kitchen to the lounge. Do you live on your own or is there someone at home to keep an eye on you?

I must say the 130bpm my GP mentioned was in answer to my ex asking if we were out walking the hilly coast and AF struck, at what heart rate should we call for help. Another doctor at my surgery, seeing that my ECG showed a rate of 150, told me to go home and take another pill and if that didn't work then go to A&E. The extra pill did work.

Now I'm in constant AF I feel so much better, just about normal again.

Jean

Physalis profile image
Physalis in reply to jeanjeannie50

No, I didn't feel ill. I remember last year hurrying to get to the bus stop because the bus was due, I knew my heart was going fast and I thought that when I got there I could sit down. Unfortunately, there were no seats left and I leaned up against the wall and did an ECG and it was 195! Fortunately, the the bus came soon after. I was never breathless.

I was looking at my Holter monitor report and it says R-Test showed that the throughout rhythm was AF with rate of 200 bpm. Only one strip shows sinus rhythm. I think it rather alarmed them.

I wanted an ablation because I could see that if nothing was done I would be in persistent AF. It worked and I have been clear for a couple of months. Another reason was to get rid of the bisoprolol which they insisted on and that I felt did be no good at all.

I'm 84 and do live alone but it hasn't been a problem. I do hope it never will be!!

As a general rule I would say that A&E is for emergencies and probably breathlessness might be an emergency but feeling anxious or uncomfortable should be something for the GP to deal with. However, I don't know what it is like so shouldn't comment. Also if you hadn't had a diagnosis it would be worth going then.

Before I joined this forum I thought all AFib was more or less the same, although there were a range of symptoms. But it is clear that it is not all the same and so it would be impossible to produce a definitive set of guidelines for when to go to A&E or the ER.

Chryseliz profile image
Chryseliz in reply to Physalis

I'm the same. I have a fast heart beat of about 140 at the moment. I'm just sitting it out. I get them about three times a week and they last between 1 1/2 and 3 1/2 hours. I used to go to A&E every time when I first started having these episodes. I was always there for hours and felt very anxious and also it used to last for a least 8 hours, due I think to all the stress. Right or wrong, now I take an extra sotolol sit quietly and concentrate on something to keep my mind occupied. Today, I have been on the Ancestry site which I find very absorbing. My heart has been hammering away for 90 mins now,so hopefully soon it will revert back to nsr and that lovely calm feeling will descend on me.

Physalis profile image
Physalis in reply to Chryseliz

Yes the Ancestry site is very addictive, even more so now you get DNA matches!

Finvola profile image
Finvola

You are right Jean, it is a hotch-potch of different advice across all physicians - I am one of the ‘over 100bpm for more than 30 minutes go to A&E brigade).

I agree with 7164 regarding how one feels rather than the actual heart rate but the problem which doctors face is that one size doesn’t fit all - some are floored by symptoms that others can cope with.

I wholeheartedly agree that an informative guide to AF, its effects and treatments is sadly lacking in the NHS and would mean we weren’t left scared and confused until we find this forum for advice.

jeanjeannie50 profile image
jeanjeannie50 in reply to Finvola

We certainly needed to be given an information leaflet, with the info you describe, after having our first AF attack. It needs to be in simple words too and direct people to this forum for further support.

Jean

BobD profile image
BobDVolunteer

Sorry Jean, but just as AF affects us all differently it is not possible to set firm limits for such an idea.

AF is a chronic condition not an accident or emergency and should be treated as such by doctors. Of course if there is chest pain or risk of fainting etc then medical help must be sought but as Mark S commented many years ago " If I called emergency everytime I had AF there would be an ambulance stationed in my road 24/7."

Of course for individuals it is really up to them to make the choice and I know that some members do get very ill during AF events even needing morphine for the pain.

This situation I agree is not helped by the wide variety of advice given by doctors which frequently contradicts what EPs may have said and the usual reaction in A and E. Most AF patients presenting are merely observed and discharged later but of course if that makes a patient feel secure then fine. This may be explained by a comment made to me by an A and E doctor friend that they are not generally permitted to prescribe drugs for such things without reference to a cardiac consultant. Turn up in the middle of the night and you may not find one available.

I only wish that such guidelines could be set but very much doubt they ever will.

jeanjeannie50 profile image
jeanjeannie50 in reply to BobD

Hi Bob

We just need an information leaflet explaining to someone new to AF, what it is and that it's not a life threatening condition.

Then some written guidelines on what to do if we have an attack and when to seek help. If I had someone at home watching over me, which I know you do have, then it wouldn't be quite so worrying as when you're on your own. I wonder if I had a stroke how long it would be before I was found? It's so important to get treatment asap should that happen. I guess you have never had that worry, it's not nice!

I could never understand either how you would say you have carried suitcases when in AF. My AF attacks would make me far too ill and breathless to do that. I guess it all comes down to the fact again that we all experience different levels of symptoms.

Jean

LaceyLady profile image
LaceyLady in reply to jeanjeannie50

I wholeheartedly agree. My last episode all I wanted was advice, needless to say it was late at night, there’s no drs to talk too, so rang 111, what a waste of time. They ended asking me if I could get someone to take me to a&e at 3am in the morning, an 8 mile drive. Then sat in A&E for hours even though it was near empty, forgotten about. Eventually saw a young Dr who rang cardiology who said take more medication!

If an when there’s a next time, I obviously need to self assess and take the action I think fit and it won’t be ringing 111.

There is a need for an information leaflet, especially as drs haven’t the time or maybe even the knowledge.

I don’t have a cardiac nurse, how do you get one? My surgery doesn’t have cardiac clinic sessions or nurse. None of the GPS specialise in cardiac.

jeanjeannie50 profile image
jeanjeannie50 in reply to LaceyLady

The main hospital about 10 miles from where I live has 3 AF nurses and I can call them for advice at any time, within the last year after seeing them. Once that time has passed then my GP would have to refer me back to their clinic. You could ask your GP to refer you.

LaceyLady profile image
LaceyLady in reply to jeanjeannie50

For the past year I have not had a designated GP, mine left and the surgery decided not to transfer us to one! I’ve had to seriously insist I had a transfer to a named GP. Now with COVID, I haven’t been able to see the one I’m now registered with🙄

I hope the time will be right to discuss my AF and such like in the near future, at the moment there’s obviously more important things for them to cope with. Thanks

Coco51 profile image
Coco51

I so agree. EPs are keen on treating Arrhymmias but not so hot on managing them. Cardiac nurses are better on how to live with AF.

My EP and nurse have always said, "Go by how you feel". When pushed they say go to A&E if your rate stays at 150 or over or if you are breathless or have chest pain.

I have to say the two occasions I have been to A&E I have wondered why I bothered. The doctors have been very kind and sympathetic, but young and fairly inexperienced. They have had to phone cardiologists to get advice. (The emergency consultants always seem to be busy with heart attack patients or accident victims or severe allergy patients).

Anyway, they have put me on a heart monitor plus intravenous Magnesium drip and given me extra beta-blockers. After a few hours when the HR is down to 100, I've been sent home. I could have taken magnesium and extra bisoprolol at home.

But you are right - we should be told what to do. Perhaps EPs are worried that if someone takes their official advice and things go wrong they could be sued?

jeanjeannie50 profile image
jeanjeannie50 in reply to Coco51

I too wondered whether if a consultant gave exact advice on what to do, if he would be worried about being sued. Better to hand out pills and let the companies who make them take the responsibility!

Jean

LaceyLady profile image
LaceyLady in reply to jeanjeannie50

After my last episode in a&e, I decided to consult my Consultant and as I’ve only seen him privately, obviously I then had to pay for advice that should be available from a GP. We’ve had private cover from husbands job and now he’s retired we had to get an affordable cover.

My Consultant said to increase medication, but not what to do if it wasn’t working, I suppose the answer would be paramedics

wilsond profile image
wilsond

I agree Jean. I have had conflicting advice over the past 6 weeks in particular.

I understand what Bob means too.

I wonder if an EP could offer their opinion about their own guidelines for heading for help (when and why )

I was being managed after a fashion by my GP at the start of all this. However,one day I was so floored by an AFib attack my son called an ambulance out,they took me in and was put into flecanide etc. And kept overnight.

So sometimes AF can be seen to be an urgent need.

jeanjeannie50 profile image
jeanjeannie50 in reply to wilsond

I agree AF can be an urgent need, I've only once gone by ambulance to hospital with AF and that was when I was struggling to keep conscious, sweaty and nauseous. I was kept in for several days. That was my worst attack ever and the time the pulse in my wrist was indicating a normal heart rate, but was in reality going crazily fast.

Are you under the care of an EP now?

Jean

sotolol profile image
sotolol

At last well said. .....It’s confused me for 14 years. Get told different things from different doctors. So yes JEAN ....... help us please😍😍if there is someone reading this that can set guidelines.

jeanjeannie50 profile image
jeanjeannie50 in reply to sotolol

I think we desperately need some guidelines, even if it's also stated that there can be exceptions to what's being advised.

Jean

Jalia profile image
Jalia

I doubt whether there could be clear cut guidelines.

If you know from experience that you will return to NSR within a period that you could tolerate then ok to wait it out.

If you are new to all this then I'm sure that a prolonged rate over , say 130 would probably be alarming.

Maybe I've been lucky with my hospital but with the countless times I've been to A&E I've been seen to promptly , never been made to feel a nuisance and more often than not been cardioverted. ( my AF was classed persistent )

jeanjeannie50 profile image
jeanjeannie50 in reply to Jalia

I've been treated the same at my hospital Jalia, always with respect and kindness.

I think there could be some guidelines put forward, but also with something written stating that they are only 'guidelines' and there could be exceptions to many of them. Also to seek professional advice if concerned.

Jean

Jalia profile image
Jalia in reply to jeanjeannie50

That sounds about right actually

Paulbounce profile image
Paulbounce

It's certainly confusing and different doctors have different ideas. So do cardio's - I saw one privately abroad who changed everything (med's etc) and said he was 'annoyed' with his UK colleague for putting me on the med's I was on. As soon as I saw the UK cardio it was all changed back again. Rock and a hard place springs to mind !

Ref HR. The one time I did go to A&E a doctor told me if it was 125 (or above) for more than 4 hours then I should go to A&E. That was the advice given to me but other people seem to be told different things.

We are all different regarding afib. Personally I just go with my gut feeling these days. Certainly if you have any chest pain then you should seek medicial help there and then. Sometimes though it's a hard call to make. None of us like having to go to hospital but our hearts are the most important organ we have. My feeling is to sit things out if I return to afib - however another part of me thinks 'best play safe'.

Jean wrote

"All we really need is one clear set of guidelines (devised by experts) re our heart arrhythmia's, as to when we should sit them out, contact our GP, go to A&E, or call an ambulance"

Yep I agree Jean. The only problem I foresee is not one size fits all regarding guidelines with afib. Age / other underlying health problems would all have be considered. I'm sure this could be done though - let's hope it happens soon.

Paul

jeanjeannie50 profile image
jeanjeannie50 in reply to Paulbounce

The old idea re hospitals and doctors was that you were treated and not told much about the details of what was wrong. It was kept from you, they probably thought we knew too little to understand and that may have been true then, but fortunately that idea is now changing.

One size doesn't fit all, but with regards to PAF there does appear to be a common link. Look how often members here ask what they should do re going to A&E.

I think a pulse of 125bpm, or above, for more than 4 hours would be a good recommendation for going to A&E.

Jean

sotolol profile image
sotolol in reply to jeanjeannie50

Yes Jean we are all more savvy now and can look information up on line.

125 for 4 sounds good to me.

My cardiologist is calling me 24.September so I may well

ask her opinion as I’ve a lot of confidence in this lady. I’m getting more help by telephone than a hospital visit.

Jo

jeanjeannie50 profile image
jeanjeannie50 in reply to sotolol

It was Paulbounce saying he was told at A & E those rates. I thought they sounded about right too. It would be great if you could ask your cardiologist what she would recommend. Jean

sotolol profile image
sotolol in reply to jeanjeannie50

Yes Jean I will. I’m ALWAYS answering the wrong person. But yes Paul’s reply was a good one. Hope you are well today

doodle68 profile image
doodle68 in reply to jeanjeannie50

Good heavens Jean 😊 I might as well take my bed and stay in A&E then .

It takes so long to get seen at my local A&E, my episodes last 8 hours with a HR of 148 and that happens every 10 days so it would make it hardly worth going home 😉

jeanjeannie50 profile image
jeanjeannie50 in reply to doodle68

If you know roughly how long your attacks will last and they are regular, then for me there would be no need to go to A&E.

Jean

sotolol profile image
sotolol in reply to Paulbounce

I like that 4 x 125. I’ll try to remember that. I answered Jean and not you. I do that a lot. So next time 125 for 4 hrs seems good. Cheers Paulbounce.

Coeurdelion profile image
Coeurdelion

Good one Jean. Clear guidelines would be good.

belindalore profile image
belindalore in reply to Coeurdelion

I totally agree. Same thing needs to be done here in the USA. Along with Drs needing to try and find causes of Afib and not just treat symptoms. Aren't we all more than just symptoms?

jeanjeannie50 profile image
jeanjeannie50 in reply to belindalore

Ah but there's no money in discovering what the cause of an illness is and that would put them out of a job!

I love your phrase, "Arent we all more than just symptoms". I can see that on a placard as we march in protest at there being so little research carried out into the cause of our Afib.

Jean

belindalore profile image
belindalore in reply to jeanjeannie50

You are so right. Just like I explained to a gentleman in a post above. In the USA healthcare has become profit over patient. The insurance companies basically rule what Drs do here. And they are financially rewarded too prescribing certain drugs. Still wined and dined by big pharma to get them to prescribe their drugs. Big pharma rules insurance and Wall Street rule over all. Investors in the healthcare industry want to see big profits from the stocks they own. They don't care if the drugs work or not for people. Just want to see them sold to line their pockets. And who ends up getting the shaft. We patients. I honestly don't know how Drs sleep at night knowing that the drugs they use are dangerous. Guess they count their money in their sleep ?👿

There are good Drs. There are. But not everyone is lucky or blessed enough to get one. I'm 68 now and I remember when Drs doctored. They looked at you. Looked in your eyes at YOU. Asked you questions. And if they weren't sure what was going on they had the balls to tell you. And would do their best to find out. Now it's take pills and deal with it. Last visit with the cardio Dr I see got mad cause I asked him about nutrition and how important it is for the heart. And he pointed his finger at me and said I'm trying to help you. Ha. I almost laughed. I gave up. He only knows pills and surgery. Sad. When I left I expected some follow visit. Nope. Nothing. He did agree for me to use the metoprolol that was ruining my QOL as pip and said well if you go into Afib again come to the ER and we'll help you. What an a**. How's that for helping the patient. He's in a big group in his building. I could probably see one of the other drs but I figure they all discuss each other's cases so none would be any better. So.........

jeanjeannie50 profile image
jeanjeannie50 in reply to belindalore

That sounds awful and exactly what my sister who has lived in the USA for over 50 years tells me.

I too remember old style doctors, you'd point out a spot on your body that you were concerned about and they'd say come down the hospital this Thursday and I'll remove it. Another doctor wanted you to know all about what you had wrong with you and would explain in depth, he was always behind with his appointments, but so lovely and caring. Another had run a hospital out in the wilds of Nepal, a three day walk from the nearest town. He knew everything! All a bit different to doctors today, who are paid by drug companies to prescribe drugs. I hate to think what health care will be like in ten years time!

Jean

belindalore profile image
belindalore in reply to jeanjeannie50

Yes it is awful. But I still have my primary. She's a little more open minded😒.

Yes Drs aren't like they used to be and I see not just here in the USA. My hope is that somehow the Drs will start to catch on and go back to doctoring in the future. But not as long as the system is profit driven. There are "functional" Drs coming in but functional medicine is what we are talking about. Doctoring like they used to do. There's also a few Drs here who go into what they call concierge. They charge a patient or family a set fee every month to cover the Drs costs. The Dr doesn't accept insurance unless it's needed. So he doesn't need a dozen people he has to pay for sorting through all the different insurances so his overhead is lower. But they are few too. They keep saying money for Medicare and our social security is running out. That's what many of us seniors depend on for healthcare and social security for income. Of course the government has stolen money from social security forever. The ones who don't worry are the wealthy and most have no concerns either about the rest of us. The world is not a very nice place anymore in too many ways.

Sparky143 profile image
Sparky143 in reply to jeanjeannie50

I agree with both of you!!

Sparky143 profile image
Sparky143 in reply to jeanjeannie50

🙌🏾 I was flabbergasted when I had my first AFIB hospitalization in 2014 and when I asked my doctor ( who was the head of Cardiology)what was the cause of my AFIB, he said," WHY IS THE SKY BLUE?".

Unacceptable!!!

And all along my 7 yr AFIB journey ( 8 cardioversions, toxic drugs that have eroded my formerly robust vitality and an Ablation in June) it has been the same. And I am deeply upset about this.

There is an epidemic of AFIB in America, and from the sounds of it, the UK as well. Millions of people are not walking around with quivering hearts for no reason. The simple truth is AFIB would not be a chronic condition if they would bloody well get to the bottom of it!

Every condition has a root cause. Only when root cause is uncovered can the correct remedy for a cure cure be given. Without a cure, we are reduced to sickness management. That is a bazillion dollar industry. Cures have no patents!

This is the flaw in western medicine today. I bemoan this fact, because if we want to find the root cause we are forced to do the work and our own research and I find that exhausting.

And when you've been suffering from AFIB for years, you are already exhausted!

There has got to be a better way.

I am so. glad I joined this group. You are all brave, kind, generous hearted people, and I so appreciate everything you share. It is a comfort to have a place to go because I am all by myself in this world and it can be very isolating.

After 7 mos of a rock steady heartbeat, yesterday I woke up in AFIB.

I've been off the heart med since September, and the Eliquis finished mid December. And I was thrilled. I was to be a " One and done" and I never wanted to walk into another ER again . This is a setback and it's made me feel a sense of despair and also anger. 7 and a half years and they STILL haven't fixed it!

My AFIB is a mystery. I will leave no stone unturned until I find out what is causing it!

In the meantime I am laying low resting, shoring up my magnesium, minerals, electrolytes, D3, Lemon Balm, Epsom salt baths and doing my best to stay out of fear. Nothing too crazy with my pulse..not like the wild tachycardia I had before. Pulse just feels erratic and weak.

I am keeping an eye on it and doing my best to relax and send love to my heart. For now.

Thanks, Jean. You sound like a kindred spirit. I continue to be impressed by the NHS. You guys are fortunate indeed.

jeanjeannie50 profile image
jeanjeannie50 in reply to Sparky143

Have a look at this, I'm going to give it a go:

carrafibdietinfo.com/

jeanjeannie50 profile image
jeanjeannie50 in reply to Coeurdelion

We can live in hope I guess. Consultants and Cardiologists do come onto this site from time to time. Lets hope one sees this post and the many other ones asking for advice on when to go to A&E.

Jean

JaneFinn profile image
JaneFinn

I agree, Jean. We know it can’t be a blanket rule for everyone, as people’s conditions and treatment options are different - but some general guidelines would be so helpful. Even some ‘different case scenarios’ mapped out for us might be good.

My AF events have always been 150-200bpm, and I can’t take anti arrhythmic drugs.

I have asked if/when I need to get seen, and been given varying advice - from A&E cardiologist and cardiac nurses (come in after 2-3 hours), outpatient cardiologist (come in after 12 hours), and EP (leave it as long as you can and hope you self convert). The EP surely knows best??

But could I leave it too long? The implication that it can be damaging to the heart to keep going at that high rate doesn’t reassure me. And the advice that says come in ‘if you feel unwell’ - for me that would mean immediately, as i never feel well in AF of 190bpm!?

I guess for me the most helpful thing would be to have guidelines on the potential risks of NOT getting treated. I would always rather sit it out at home. I just need to know when it’s really better to get seen - for my immediate health, or for my treatment options, or for the sake of my long term prognosis / health.

I’m really hoping you’ve started something here, Jean :) x

Buffafly profile image
Buffafly

I think the difficulty with going by how long you have been at a certain rate is that rate varies through the day. Mine was 97 soon after I got up and 160 later. Funnily enough I was surprised to see the 160 as I didn’t feel that bad and I think it was because the beats were fairly even by AF standards, a very uneven slow beat is just as bad.

Probably chest pain and/or faintness are the symptoms to send you in, regardless of time. If there was an A&E protocol to try to try to return you to NSR regardless then it would be good to go sooner, but there isn’t 😕

jeanjeannie50 profile image
jeanjeannie50

Hi Jane

It's typical that you were given such differing opinions as to when to go to A&E. I think Paul above gave a good suggestion, that being a pulse over 125bpm and having gone on for more than 4 hours. Of course you have to take into account just how you are feeling. It's so strange how we are all given such different advice. I was once told off by a nurse for not going in sooner when my heart rate was 160.

I have to say that I too would much rather sit out an AF attack at home. Lying on a trolley in a cubicle in A&E is mind deadening, but also reassuring that help is at hand.

It's the thought of having a stroke that bothers me. I wish I'd never worked in a nursing home and been witness to how disabled they can leave you! Even more worrying because I live on my own and I wonder how long it would be before I was found. Prompt medication after a stroke is extremely important, I think it has to be given within 3 hours for best results.

Jean x

Clarrie profile image
Clarrie

I agree with you Jean. I was once told by a cardiologist when in hospital with AF that he had sent patients home with a HR of 160.

jeanjeannie50 profile image
jeanjeannie50 in reply to Clarrie

My goodness that doesn't sound right does it! A lady GP once sent me straight to A&E from her practice with a heart rate about 126. Did you definitely hear what he said correctly? A nurse at hospital once told me off for leaving it so long before going to them with a 160 heart rate. I was admitted to hospital on that occasion. A GP once sent me home with a heart rate of 150bpm telling me to take another 100mg of Flec, with the instructions that if it didn't work within a certain time I was to go straight to A&E. It did work, thank goodness. So even docs working at my surgery all have different ideas.

Jean

Clarrie profile image
Clarrie in reply to jeanjeannie50

Yes I was really surprised when he said that. My GP had told me to go to A&E if my HR was 120 but the cardiologist didn't agree and that was when he told me he had sent patients home with a HR of 160. Once when my HR was 180 and I went to A&E they took me straight into resus and got a doctor which really frightened me.

Sparky143 profile image
Sparky143 in reply to jeanjeannie50

That's crazy making.

secondtry profile image
secondtry

Hi Jean, I think the problem is doctors just don't know. They find it as difficult as us to deal with. Pills that are prescribed are frequently wrong. The result is that it is 'every man(/woman) for himself' and so they are unlikely to get together and produce your wished for guidelines.

jeanjeannie50 profile image
jeanjeannie50

I think you're right and GPs all have different ideas. Wonder if they have a crystal ball hidden under their desk that prompts whatever comes into their mind. Because that's what it feels like! Yes we have to be alert every step of the way watching what they prescribe, making sure it's ok to take with our other meds. I feel sorry for elderly people in our town who take medicine prescribed even if it makes them feel ill, because the almighty doctor said it would help. Time after time we see them collapse with low blood pressure.

Jean

Desanthony profile image
Desanthony

Maybe what we need is for our EP/Arrhythmia nurse led clinic to set out a plan for us as individuals whilst in consultation though I imagine that that would take so much time they wouldn't be able to do it these days.

jeanjeannie50 profile image
jeanjeannie50 in reply to Desanthony

That's a good idea, would it take that much time though? They could just look at our ECG, see exactly what our heart is doing and then tell us at what rate we should be going to A&E.

Jean

Desanthony profile image
Desanthony in reply to jeanjeannie50

No but when you may be limited to 10 mins a patient it could just take up too much time. A lot of Asthma nurses/British Lung Foundation Nurses do this for asthma sufferers so it can be done.

Lbeat796 profile image
Lbeat796

Jean, i was told to go to A and E if i fekt dizzy or experienced pain aling with fast heartbeat. I dont even have a diagnosis. Have had scan of my heart which was fine. Holter which shows ectopics which often lead to arrythmia of up ton110 bpm. Doctors prescribed Atenolol 25mg which i have been taking for around 20 years. At that time my own GP said I was handling episodes quite well, valsalvor maneuvers, diet etc so best just to carry on. I never know what to do but they usually only last 1 to 3 hours. I am sure all episodes triggered by vagus nerve and this has all happened since endoscopy for gastric ulcer. Hope you are ok Jean as have just noticed your horrific nose bleed episode.

jeanjeannie50 profile image
jeanjeannie50 in reply to Lbeat796

Sounds like you have your AF in hand at the moment. The Valsalver Manoeuvre has worked for me for a few times, trouble is nothing is ever consistent and what works one day often doesn't the next. It would be nice to have a handbook with all that we could try listed - perhaps I could make my fortune doing that. Pigs may fly! 😂

Over my 15 years of AF I've had lots of attacks, some severe - where I've had to fight to stay conscious and others mild with a heart rate under 100.

I can understand you thinking your endoscopy may have triggered your AF, the thing is we just don't know anything for sure do we!

My nose bleeding - well that was one of the horrors of my life and I'm terrified of it happening again, but life goes on! Thank you for your concern.

Jean

Lbeat796 profile image
Lbeat796 in reply to jeanjeannie50

Nothing ever works consistently which is a pain. When i was in my 40s a long time ago I read that doing a headstand can shock the heart out of it. I was on holiday with my 16 year old daughter in Santa Monica, had an arrythmia in McDonalds, did not want to tell my daughter so proceeded to toilet and did a headstand in public area of restroom which was empty. I wonder now if they had cameras lol. Other one time remedies, frozen veg packets to neck, holding breath putting pressure on throat, quick short breaths, turning head and talking to my cat! Nobody understands like a fellow sufferer. I am sure most people think its all in my head..I wish.

jeanjeannie50 profile image
jeanjeannie50 in reply to Lbeat796

That would have been funny if someone had caught you doing the handstand! I think the men in white coats would have been sent for!

I once read that putting both legs up the wall could stop an attack. So one night when AF struck this is what I did, well I came over all dizzy and thought I might pass out. I envisaged dying and being found on the bed with my legs up the wall, later it really made me laugh wondering what people would have thought when I was found in that position.

Yes, no one else quite understands how AF can make you feel - apart from another sufferer Thank goodness we have this forum.

Sparky143 profile image
Sparky143 in reply to Lbeat796

Love this!!

doodle68 profile image
doodle68

I went to the arrhythmia clinic yesterday at 4pm.

I had gone into AF at 10:30 am with a HR of 146bpm.

Had I not been waiting for a clinic appointment since February (delayed by C19) I would not have gone, I am too breathless to talk easily during an episode.

I attended the clinic to be referred for an Echo so my suitability for being prescribed Flecinide can be checked, a nurse did an ECG, HR still at 146 and my BP raised eyebrows.

The consultant I saw who had a copy of my ECG in front of him (he was an EP I had never heard of and not mine ) and we discussed my options as I struggled with my breathlessness made worse by wearing a mask. He asked when the episode started but not once mentioned my raised HR,suggested I needed hospital treatment or gave any instructions as to what I should do during my episodes.

As with most of the medical profession I have met since being diagnosed with P-AF his main interest was discussing Ablations and when you say you don't want one they seem to lose a bit of interest in you.

jeanjeannie50 profile image
jeanjeannie50 in reply to doodle68

I know exactly what you mean. After my third ablation my EP told me that there are some people who just don't do well after having ablations and I was one of them. Then he discharged me from his care!

jeanjeannie50 profile image
jeanjeannie50 in reply to doodle68

I wonder if the EP didn't look at your ECG properly, it's odd that your heart rate on the ECG wasn't mentioned. He wants to try having a dose of Afib!! Grrr!

doodle68 profile image
doodle68 in reply to jeanjeannie50

Jean 😊 it felt like he was just gong through the motions and wasn't really interested. I didn't like to ask if he had any clear instructions for dealing with episodes . The nurses who did the ECG were far more concerned.

Sparky143 profile image
Sparky143 in reply to doodle68

🤨

jeanjeannie50 profile image
jeanjeannie50

And so we wander blindly not knowing what to do for the best! It's maddening!

Lbeat796 profile image
Lbeat796

Jean i bought a Kardia device. Brilliant. Every arrythmia attack i took i recorded. I was to send readings to consultant which I did. Because of Covid i received a letter telling me they were not dangerous. I cant remember his exact wording. But no explanation as to why my normal heart rate of 60 to 70 bpm can increase to 130 to 140, stick there for around 3 hours, they start and stop for no reason. I still do not know why and still unsure of when I am supposed to take a trip to hospital. But I am pleased that he thinks they are harmless. I am not complaining but just feel that we are dismissed far too easily.

I had my xovid vaccine the other day which raised my heart rate for about 12 hours. Weird. But not an arrythmia just fast heart rate.

I get more information from this group.

Hope your are well

Linda

jeanjeannie50 profile image
jeanjeannie50 in reply to Lbeat796

Thank you Linda, I too really appreciate all the help and advice I've received from this forum. I feel I'm part of a big family here and they all know just what having AF is like.

My heart rate has been a bit more lively since having the vaccine, but I know that if I think about what it's doing and get anxious it will become a lot worse.

I'm feeling quite well right now, thank you.

Jean

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