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persistent afib

wbekim profile image
38 Replies

can anyone help please I have been in AFib continuously now for over two weeks I am extremely symptomatic with palpitations like worms wriggling in my chest extremely anxious and feeling fatigued I have been in touch with my cardiologist who told me to double my dose of bisoprolol to 5mg and it is not doing me any harm unless hr constantly over 110 at rest he has made an appointment for 5th September to review I have contacted my gp as I cannot tolerate the palpitations she has told me she cannot prescribe anti rhythmic to resolve issue it has to be specialist I seem to be caught in between as gp is now saying take 3.75mg of bisoprolol as bp getting close to 90 systolic any advice please

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jeanjeannie50 profile image
jeanjeannie50

Could you afford to pay privately to see a consultant, about £200? It's dreadful that you have to wait all that time. Another idea would be to say that you could take a sudden cancellation appointment should one arise.

Consultants have no idea how we suffer when in AF, do they?

If you ever have an ECG done, make sure to ask for a copy of it. You never know when it will come in handy.

Let us know how you get on please.

Jean

wbekim profile image
wbekim in reply tojeanjeannie50

Thanks jean can’t get private appointment until 14th July have booked it anyway but still going to have symptoms etc until then and will probably have to wait further for alternative treatments just so worried about being in AFib constantly but keep getting told it’s ok provided rate stays under 110bpm

jeanjeannie50 profile image
jeanjeannie50 in reply towbekim

These are all the tips I’ve saved over the years, given by forum members, for stopping AF. None have been written by me, all from other members here (names have been removed for privacy):

I am a therapist in private practice for over 20yrs.One of my therapies is yoga based. Having quite an accurate knowledge of anatomy, neurology and physiology also having PAF I have found this technique helps me immensely when my heart is fluttering like crazy. Make yourself comfortable either on a bed or lying on the floor, position a pillow under you head, Raise your left arm in an extension position as if you are doing the backward crawl. Stretch as much as you can and imagine that it is stretching your heart muscle...I bend my arm and position my hand under my head palm upwards.. Stay in that position for as long as you can or until the fluttering subsides...At the same time I think of something pleasant. It does not matter what you think about as long as it is a pleasant thought for you. This stops my heart jumping about almost instantly....I also place my right hand over my heart area...Don't panic and just keep calm thinking pleasant thoughts....I do hope this helps you. Kind Regards. C

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As someone else who finds yoga breathing and some positions helpful, I would love to try (xxxx) suggestion, but lying down flat tends to make things worse for me. My most helpful position, taught me by a lovely yoga teacher, is based on a yoga forward bend. I sit up with my legs outstretched in front of me and a pillow under my knees, and then bend forward from the hips not the waist, with my arms relaxed but outstretched towards my ankles, and breath deeply and slowly. It's not so good on a full stomach and is more comfortable with your knees slightly apart, and I guess you have to be a bit flexible to find it comfortable, but it has proved to be a great help.

I agree with (xxxx) that staying calm and focusing on something pleasant is a must, and I've even fallen asleep like this as most of my episodes occur at night.

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Finally, like AV nodal re-entry, some people have recurrent rapid rhythms that are infrequent and easy to self-control by using various methods to increase neural slowing to the AV node (so-called, "vagal manoeuvres"). Using these manoeuvres, one can sometimes stop the arrhythmia. These manoeuvres include:

Bearing down forcefully like you're having a bowel movement for 5-10 seconds, then slowly exhaling in the neck while lying down for approximately 5 seconds

Placing very cold (soaked in ICE water) cloth on the face abruptly.

Coughing forcefully

Rubbing the carotid artery (only one side at a time, never both) ---------------------------------------------------------------------------------------------------------------

There's a yoga breathing exercise that has worked for me before. Lie on your back, bend your knees up so they are above your hips and your lower legs are at 90 degrees. Take a breath in for a count of 4 then breathe out for a count of at least 8. As you breathe out, bring your knees into your chest so you curl into a ball. When you think you've got all the air out of your lungs, try and breathe out more! Breathe in again for 4 and release your legs out to the starting position. Repeat several times. It helps to reset the diaphragm and focus should be on a good long out-breath.

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So, after discovering that making myself sneeze stops Afib. I have discovered another novel way to stop an attack. It involves drinking a litre bottle of water while holding my nose. It's especially effective if I experience almost panic as I can't get a breath. I don't always finish the bottle but find that's not always necessary to gain the desired effect. Works especially well if I catch an attack early.

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This works like magic, and works every time.

A quarter teaspoon of sea salt mixed with 10 ounces of warm water. drink that and then put a smaller amount on your hand and lick it off. Within a minute my afib stops.

This may sound like a "wind up" but believe me it works, for me anyway.

Hope this is of use to someone.

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I found if I lay down on the floor and put my feet up against a wall, it seemed to stop my SVT after a few minutes, not sure why it worked, but it didn’t work for AFib though.

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Please let me know if any of these procedures work.

Jean

Cabinessence profile image
Cabinessence in reply tojeanjeannie50

Interesting Jean. The one position I find antagonised my AFib (pre-ablation) is lying on my left hand side in bed. My first EF nurse said it was only because I could hear my heart more in that position, which is codswallop and typical of some Ef nurses and other medical pros who just don't listen to their patient. I could trigger an attack within seconds by lying on my left side. I've read others on here that have said the same. So my only input for you on this Kim is avoid that if you can. The other tips Jean's given above sound like they're well worth a try. And if it's any consolation, worms wriggling in your chest, whilst upsetting, is nothing like Skippy trying to exit your chest cavity whilst Michael Flatley and his entire cast on speed simultaneously perform the River Dance. I hope you get some respite soon Kim.

jeanjeannie50 profile image
jeanjeannie50 in reply toCabinessence

I can't sleep on my left hand side either, neither can many on this forum. At one time, before AF, that was the only side I slept on. Hmm, now I wonder if that was a trigger!

Tapanac profile image
Tapanac in reply towbekim

Each time I have a covid jab or covid itself or any infection I’m in afib/tachycardia for at least 5-6 weeks. Now I’m in permanent afib.

Your GP correct about not being over 110 but as jean said perhaps even though your private consultation isn’t until 15th July perhaps ask for a cancellation if there is one

Alternatively if you are in so much discomfort or have aches/pains in your chest or very breathless call an ambulance. The paramedics will send you to A&E for a check and from there you may be given something like flecainide.

Hope you feel better soon. We all know how scary and uncomfortable it is.

Alphakiwi profile image
Alphakiwi in reply toTapanac

I get more afib probs if i excersise, which o like doing. Its all about keep my heart from going over 70% of my max which for me at 82 is about 95bpm

Lilylui profile image
Lilylui in reply towbekim

I have been in persistent AF now 12 months and glad to hear it’s okay if heart rate under 110 mine doing anything though is up to 170

Can’t offer any advice I have tried everything. Nothing has worked I should have had my check up in March but still waiting and it’s July !! Only on anticoagulant at mo as heart drops to 36 at times. Good luck and hope you get sorted

37Polly profile image
37Polly in reply toLilylui

My heart rate would drop too low when I took extra beta blockers so my doctors recommended a pacemaker. It has been very successful. No more low readings, however it doesn’t control high readings. Now waiting for ablation.

SamAdmin profile image
SamAdmin

Good afternoon wbekim

Thank you for your post on Atrial Fibrillation support group.

Would you be able to speak to another medical professional about your symptoms as they have been going on for over 2 weeks now.

We have a booklet that may be of interest to you 'AF and you' I will link below in case you would like to take a look.

api.heartrhythmalliance.org...

Kind regards

SamAdmin

Booklet
wbekim profile image
wbekim in reply toSamAdmin

Thanks Sam have read booklet many times I have contacted my NHS gp and a private gp both say as long as hr is below 110 resting it makes no difference whether or not symptomatic however I find the palpitations which are constant cause me extreme anxiety gp has prescribed 2mg diazepam x twice daily reluctant to increase as bp around 100/65 conflicting advice is so confusing Mike

Popepaul profile image
Popepaul in reply towbekim

I would be careful with the use of diazepam, short term only. It is very addictive and it can worsen the anxiety. Far better to meditate, yoga etc. Good luck.

37Polly profile image
37Polly in reply toPopepaul

I think the panic around diazepam is exaggerated. I have taken it off and on for over 50 years. Until recently got 5 mg 30 at a time easy refill. Always cut in half. Never used more that 15 to 20 a year. Now doctor prescribes 2 mg. 10 per year! Ha! I still never use the whole pill, nor do I use all 10. I think its a joke.

Alcohol is a bigger kick and more addictive. How about restricting that?

Popepaul profile image
Popepaul in reply to37Polly

Well done. I worked as a psych nurse for many years. I have known lots of patients for whom long term use of benzos has signifantly exacerbated their initial illness for which treatment was required. For them it proved to be counter therapeutic to say the least. I suspect most colleagues with whom I have worked would agree with this statement.Regards.

37Polly profile image
37Polly in reply toPopepaul

Good point. You see more than the rest of us. I am always a reluctant pill taker and simply avoid becoming dependent on anything that I can avoid and found over the years valium at a low dose was less problematic than many other meds that were pushed on me , for example sleeping pills, or even gabapentin when I had a horrible case of shingles. But we are all different.

Rainfern profile image
Rainfern

Hi Wbekim.

I understand how horribly uncomfortable persistent AF can be as I was in persistent for a year before I had my ablation. It’s very odd how we all experience the symptoms differently. Some people have invisible persistent AF, but I was not one of them!

I’m glad to see you have booked a private appointment - I hope that’s with an electrophysiologist (EP) as they are most qualified to advise. Meanwhile do practice whatever helps you reduce anxiety. And never be fobbed off but have your questions ready for your cardio appointment and all future GP appointments.

People get scared by persistent AF, but it doesn’t kill you and it is as treatable as any other AF. What seems to matter is that you get treatment as soon as possible - and two weeks is a very short time in the grand scheme of things!

wbekim profile image
wbekim in reply toRainfern

Thanks rainfern its the incessant palpitations like worms in the chest or the heart being pulled down or feeling as though it’s no longer being held in place that causes me excruciating anxiety as it’s hard to accept this is not causing damage or going to result in a collapse or worse

Rainfern profile image
Rainfern in reply towbekim

I understand entirely. My symptoms improved when they got the meds right. My GP prescribed propranolol which is an old fashioned beta blocker and an “old friend” of mine from years ago when I had anxiety attacks many years ago. Just having it in my pocket and knowing it was there brought my heart rate down! The special AF meds did nothing for me - bisoprolol reduced BP too much and amiodarone (anti arrhythmic) made no difference. In the end digoxin was the only thing that made me less breathless and brought HR down a bit.

My lifesavers: This forum, and I subscribed to a meditation/relaxation app called Balance which provides clear and sensible sessions without a lot of music and whale noices and is great for beginners and experienced practitioners alike. I was initially told I’d have to live with it - but don’t let them tell you that. Your EP will run through the options.

Desertflowerchild profile image
Desertflowerchild in reply toRainfern

Propranolol is my go-to when my resting heart rate exceeds 100 while in afib. For me, it is an old acquaintance: I would use it before public speaking - very occassionally, as my public speaking was very occassional. Metoprolol, on the other hand, brought me to my knees.

Cabinessence profile image
Cabinessence in reply towbekim

I think the heart being pulled down feeling are actually ectopics Kim and they are probably happening at the same time as your main AFib. I used to think that feeling was all part of the AFib, but since my ablation all I've had are ectopics and that's the pulling down feeling. Initially I thought the ablation was failing because that was the main feeling I associated with being in AFib (in addition to Skippy and Michael Flatley dancing in my chest), but when I sent my post ablation traces from my phone over to my EP, she said they were harmless ectopics only. I'm now off low dose Bisoprolol and on a calcium channel blocker and they've reduced to virtually nothing. One year anniversary of my ablation is in 10 days and like some of the literature says, the benefits can take longer than the 3 month blanking period to become apparent. Touch wood it continues!

mav7 profile image
mav7

Do you have a Kardia, Apple Watch, or other device to monitor your afib ? If so, for peace of mind send a report to your doctor.

If your heart rate and blood pressure are being controlled, with all due respect, sounds like stress may be a factor. Review jean's tips above especially the stretching and yoga. Best to You !

JillyBeau profile image
JillyBeau

I would go to A&E. It may help to decrease anxiety at least if you have been checked over and given an ECG/blood test. You could try giving up sugar/carbs for 24 hours, blood sugar can be an issue.

Ppiman profile image
Ppiman

Well, I could say we're both in the same club and, like you, I was press-ganged into joining and want to leave, please!

If you have had a recent echocardiogram or similar, your cardiologist will know whether you are a candidate for anti-arrhythmic drugs, so you should now email your cardiologist's secretary and ask if you can start a trial of flecainide or similar to see if it will help.

As well as this, when the anxiety hits hardest, keep repeating the mantra that "I'm safe. It's just a feeling." You might also ask your GP to prescribe a few 5mg diazepam tablets to take only when your anxiety peaks. The drug sometimes helps take the edge off the nerves. He or she will be reluctant as if overused some get dependent on this type of drug, but you can tell your doctor that you are not so foolish as to take it regularly - and that something has to be done.

I was given a stress MRI three weeks ago to check my heart is suitable for flecainide. I had a phone call last week from the cardiologist with the results and, in my usual elation at being told my heart was sound, I forgot to ask the right questions and he never mentioned about flecainide. Typical. All I was told was "Good news! No signs of a heart attack and pumping well! All your troubles are ectopics and AF". I was only told that I can await around a year for my ablation or choose to have a pacemaker to allow a higher dose of bisoprolol, which would help (I have bradycardia so am limited presently with beta blockers).

As Jean suggests, you night be able to see your specialist sooner privately, but the above suggestions should save this.

Steve

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hi

I was diagnosed with Stroke Embolic type, Rapid and Persistent AF abd within 4 days the Carotid Arteries Scan showed a shadow in my right thyroid lobe.

I know what caused it.

Step 1: Control Rapid H.rate - Given Metoprolol against my Will - H.rate Day 185 and pauses at.night although H/rate drops to 47avge at night.

Changed to Bisoprolol. I got up to 10mg but it was NOT controlling my Day H/Rate.156 Day. 47npm Night.

And I left with 24hr monitor saying that.

At 2 years 3 months after stroke my Locum said go and see this Private H/Specialist.

He introduced me to a Calcium Channel Blocker Diltiazem. Settled at 120mg controlling my heart rate. Me reducing Bisoprolol down to 2.5 for BP control.

You obviouslyt need a 24hr heart monitor to check what out what your meds are doing.

At this stage an anti-arrythmnic med is unlikely to assist you. Also before placing you on any such med you need to have an ECG, an ECHO to make sure your heart is structurally OK.

They can make rythmn worse. They are named risky meds for a reason.

As it is more difficult to count your heart rate whilst in persistent heart rate, a nurse doing it physically or Dr with stethoscope would be more accurate.

You can't rely on your BP machine.

Can your Dr arrange the ECHO, ECG abd 24hr heart monitor?

My Systolic andDystolic was up at 150/96. now it is H/Rate day 60s, Night 47 bpm and BP. 120-132/69.

No pauses at nght.

Do you have an idea what started triggering off your aF.

If your heart is sound he might start witha cardioversion.

Keep your exercise to mild at the moment whilst you get sorted.

Drs won't prescribe CCBs either. Get your rate down then it follows that your rythmn slows with control.

cherio jOY. 75. (NZ)

Sally_Scott profile image
Sally_Scott

like you I’m a persistent Afiber. If my hr goes too high then I automatically go into Afib and the only thing that gets rid of it is a cardioversion. What is yr rate when u go into again? If it’s higher than 130 then I wld go into a & e where they will bleep someone from cardiology. Good luck.

Cavalierrubie profile image
Cavalierrubie

If annoys me because your GP could have referred you as urgent, which mine did for me recently and l had a gastric endoscopy within two weeks. If l was desperate and in despair, as you obviously are, l would go to A/E. Most hospitals have an Ambulatory Care Department where you can get cardiac care and prescribed the appropriate medication. The GP is then informed. September is far too long to wait. Alternatively, you can go private as suggested.

Pedroboy profile image
Pedroboy

Anxiety increases AF. Cease taking your pulse rate, if like me, you are anxiously measuring it ever hour or more. Relax, relax. I was told by a cardiologist in Casualty that some people have AF going all the time; not all, but some. I think that your gp and specialist know that as long as you're living and not fainting ever so often, that your body's getting enough oxygen, and they'll see you when they're available. I was going to say, "when they're free", but when are medical folk ever free these days? Look, hang in there, relax, try not to eat or drink any 'triggers', maybe back off on eating too much for a couple of days, then slowly get back on your diet, but most of all, Relax. Be like most of us; bumpety, bumpety, bump... and call an ambulance if you begin fainting or falling down.

Auriculaire profile image
Auriculaire

I have found that taking magnesium supplements has helped with anxiety. My afib has become progressively more frequent but at the same time less symptomatic as I am no longer anxious about it. Last episode I did not even get the frequent urination. I agree with the others - Sept is too long to wait. Is the diazapam making any difference to your symptoms?

Sixtychick profile image
Sixtychick

I was told by my Doctors, , to go to A&E when I got an Afib episode ,if it didn’t stop in a couple of hours. Mine caused my BP and heart rate to soar and I was very symptomatic. They said I was not wasting their time and it was better to sort it out quickly, rather than letting it go on for too long. Whenever I went down to A&E, I was given an ECG within 30 mins and when they saw it, they took me straight round to the Majors dept. They were very efficient and usually gave me a drip to stop it, which it did after a few hours. This was Leicester. I had 9 episodes of AFib over 10 years, before I had an ablation last September and I’m sure the treatment I got from them when I had AFib, stopped it from progressing. I know most people on here say don’t go to A&E, but that was the advice I was given. I suppose it depends on how it affects you. Hope you get sorted

joebob profile image
joebob

I remember when I had persistent AFib. It was an awful feeling, and the NHS took ages to help. I called a private consultant and got an appointment for the next day. Could you contact a few more consultants to see if anyone has earlier slots and ask to be notified if there's a cancellation?

There is evidence that changing your diet could help. I’m going to try this myself next week since you can't know if it works until you try. Here’s a useful link: nutritionfacts.org/video/th...

I've followed Nutrition Facts for a few years. They always provide reference numbers for academic papers and studies so you can verify them. They won't publish study information funded by companies with a vested interest in the results.

ruskin10 profile image
ruskin10

Sorry to hear your distress I know what you're going through. I would go to A&E, you'll have a wait but they may give you more attention than just another appointment. It happened to me and they put me on a drip which after 12 hours stopped it. Best wishes Pat

manabouttown profile image
manabouttown

A big dose of Flecainide 300mg is usually given in A&E.Go to A&E and ask to be cardioverted.

Belle11 profile image
Belle11

It's a horrible feeling. Can your bisoprolol be increased to more than 5mg? I was put on 10mg biso when I first suddenly went into rapid AF, which brought the rate down to the 90s and made it more bearable.

I was in persistent AF for 9 months until a cardioversion. Hope you can have a cardioversion too, or other treatment before too long.

55zuzanka61 profile image
55zuzanka61

just go to the emergency room,now,period

farewelltoarms profile image
farewelltoarms

This is my typical experience. A big yawn when I call Cardiology office. Months to see Cardiologist and PA's seem to be annoyed that I am in office. One told me that there is nothing they can do for me. (Same one who told me husband would be dead in a year 5 years ago and he is doing great) PA''s in my case seem to be useless and months and months to see Cardiologist. I have an appt end of July and also one for second opinion from a different practice (months and months wait as well). Once I went into permanent afib where they cannot cardiovert me they have written me off and I was told to just try and live with it. After months of thinking about this I am going to get answers as to how my life can improve. The interesting thing is that the Medical Professionals act like it is my fault. I lead a very healthy lifestyle but am miserable in afib. I am 84 but thank God still with it and intend to get some answers after waiting 10 months to see Cardiologist. Keep at it. I guess we have to be our own advocate now.

tunybgur profile image
tunybgur

I don't know what meds you're on, but flecainide worked immediately for me. You can only take it if your QT interval is not too long, otherwise it can be dangerous, that's why it's useful to have a copy of your ECG.

Having to wait so long to see a specialist is totally unacceptable, the NHS is broken and the docs don't seem to care any more. I got on flec because the specialist AF nurse suggested it, I said ok and she checked with the cardiologist by phone and gave me some, it was a life changer!

Bisoprolol is like a medical cosh for me, I take 1.25mg and it slows me so much, but we're all different.

FSsimmer profile image
FSsimmer

Ok, firstly follow the advice of the cardiologist. If your symptoms get worse, or your heartrate is bothering you go to A&E. I was diagnosed with long standing persistent Afib and had it for 3 years!!...I waited over 12 months to get seen, and I had variable symptoms. Please realise the condition is treatable, but you also need to ask if you have been given a CHAD score and if you need anticoagulants ( you are prescribed these based on the CHAD risk ). Don't know how old you are, but a rate of 110 or higher is a little high and needs treating..Again, A&E if you are not happy and symptomatic...All the very best

AFnotworked1981234 profile image
AFnotworked1981234

I would ask your GP to write to your Cardiologist about expediting your appointment. They could put you on a cancellation list. Or go to A&E. I know how scary palpitations can be, when your heart is thumping so fast it feels like your heart is going to pump out of your chest!

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