Well, following on from my previous post about longest time in afib with pafib. After five days stuck in afib I gave up trying to sit it out and went to A&E hoping they’d zap me out of it, apparently not as I’d waited too long? I was in hospital for 12 hours, 8 of which was spent on a bench in a corridor and basically just had a big dose of bisoprolol, a couple of ECG’s, blood tests and blood pressure readings and was sent home and told to take 2.4mg of bisoprolol and keep an eye on my blood pressure! I asked if I might still convert back to NSR and was told possibly but most likely not? So, here I am on day six with a resting heart rate of 85 to 95 BMP on horrible beta blockers awaiting an appointment at some point with the afib clinic. I am meantime going to try and see a private cardiologist as I’m pretty sure even after a week, two weeks whatever that I could still have a cardioversion or an ablation to restore NSR? My advice to anyone stuck in afib who has paroxysmal atrial fibrillation would be don’t wait around like I did, rock up to A&E pdq!
Upgraded from paroxysmal afib into pe... - Atrial Fibrillati...
Upgraded from paroxysmal afib into persistent afib…. Deep joy!
Watched some if the presentations yesterday from the Patient's Day. You're considered in persistent AF if your episodes last longer than 7 days but less than a year. The medical goal should be to help you get back into NSR. That apparently is the guideline. So dig in those heels. Maybe contact the AFA itself for advice on that?
Sounds about right. I am now in persistent AF and being helped with Digoxin and a high dose of Bisprolol whilst waiting for a cardioversion. My Cardio/EP said that a cardioversion should work if the patient has not been in persistent AF for more than a year. Seems to be differences of opinion though.
I was previously pinning my hopes on a cardioversion at some future date but now I’m not so sure after reading about the higher stroke and blood clot risks attached to the procedure, plus you can flip back into AF at anytime? 🤔
I suspect that they did not have the expertise or staff to do the Cardioversion in A & E and not regarded as an emergency.my journey has been hard fought since beginning of February. Constantly chasing hospitals & Gps often feeling like I am talking to a brick wall.I got telephone consultation with Arrythmia nurse and was told that with my history of Tias and a operation to clear my carotid artery that it would be unlikely they would do a CV due to risk of stroke.However they did a 24 hr monitor.I chased the result & I believe I got a more experienced nurse.He was there in 2017 for my original diagnosis.He offered CV .When I asked re risk stroke he said 1 in 500 but considerably less if on anticoagulation.He said as monitor showed in Afib 95% of the time this could damage the heart.Waiting list 2 to 3 months which could mean 9 - 10 months but I think worth the risk.Firstly check for a discharge letter to your doctor .This will tell you if there is a plan in place & work from there.
Afib begets afib. The more you have it the more you will have it. Better to be in NSR if possible. I never managed to get a DC cardioversion at my local hospital, but I always rocked up their promptly trying to get one when in Afib, which for me was always high rate.I was once in high rate ( up to 195 resting) for 8 days . I still did not get a DC cardioversion but I did get a cardioversion by flecainide infusion, ie. through my arm into a vein at a slow rate of delivery.
Memory sketchy after a fairly grim 8 days 5 of which were in hospital, and I think it was gone midnight as it happened , but I think it was supposed to be delivered over half an hour.
This cardioverted me in approx 10 minutes after the start. After 8 days . There are other ways of cardioverting other than ELECTRIC shocks.
Maybe you could explore this with your medics.
Also Bisoprolol is primarily rate control not rhythm control.
Regarding blood clot risks, afib is the blood clot risk and you on anti coagulation? I never was so there was a 48 hour window to get DC cardioversion after which it was not possible owing g to risk of atrial clots. That was another reason I was quick to go to A&E.
Not medically trained , just my experience.
That 8 days was what persuaded me that an ablation was probably a better option than drugs.
Best wishes
There is nothing you have to blame yourself for! Your hesitation to go for help has not contributed to your AF getting "worse". The truth is that, with the time, AF deteriorates and, in the end, gets permanent. This process is natural and progresses with the aging (if nothing is done to prevent it).
But, it should be said that there is NO permanent AF, since some members of the forum have reported to have got back, into NSR, after long years in AF. So, it is only a lack of knowledge and the matter of time, where AF will never be able to get permanent! Fingers crossed!
Thank you for your positive reply, I think I need to alter my way of thinking and try and move forward with a goal of a more positive outcome. I am starting by paying for an initial appointment with a private cardiologist who by all accounts has experience with atrial fibrillation. I’m not made of money but I’m quite prepared to go deeper in debt if the end game is getting my health back. At 57 I like to think I’m “young enough” to explore all viable options to move forward with my afib.
Well, here another positive reply... Many health problems go unnoticed since there are no immediate or debilitating symptoms (diabetes 2, thyroid problems, gut problems, autoimmune problems,...). With arrhythmia, people often feel palpitations, skipped beats, high HR, "frogs in the chest", even pain in the chest and, of course, when the heart is in question, get very worried..
MDs are concentrated on the heart, since it is the place of executing the task, but in most cases, the onset of arrhythmia is with a perfectly sound and structurally correct heart. In my opinion, the problems are caused by the wrong signals, sent to the heart from the control system (ANS), so the heart is not able to perform the task outside of the "field of possible solutions" (does it make any sense in English...?). If the combination of parameters is surreal, the heart doesn't know what to do...
A miracle is that, even in such situation, the heart is able to continue pumping blood, so people sometimes reach over 90, despite AF. It is quite different with some other arrhythmia, so getting into the regime of ventricular fibrillation, sends a patient before his Creator within couple of minutes. So, relax, AF will not kill you, it will only make your life less comfortable!
Thank you, feeling more positive already 👍
I've been in persistent AF for close to 3 years now. It's fine. It's way, way better than the horrible paroxysmal AF that came before. I just take anticoagulant and 2.5mcg Nebivolol beta blocker (better than Bisop for me) and I don't notice it. My heart rate lives in the 90's, but I have noticed that by trying to address my thyroid issue more effectively, my heart rate is coming down a bit.
Medics assume AF is caused by hypERthyroidism. But it is also caused by hyPOthyroidism. We have to learn all we can.
This SteelHeart "In my opinion, the problems are caused by the wrong signals, sent to the heart from the control system (ANS), so the heart is not able to perform the task outside of the "field of possible solutions" (does it make any sense in English...?). If the combination of parameters is surreal, the heart doesn't know what to do...". Like very much and your English works fine!
Thanks so much!
I have not read any responses like this to explore other reasons for AFib. But I agree with you. I have Lyme Disease and Babesiosis( a form of Malaria) which causes the blood to thicken and the parasite lives in red blood cells. This is what has caused my AFib. I’m on AFib treatment and Babesia treatment along with acupuncture. My episodes were once a month or more for a few hours for the past two plus years but recently after treatment described above I’ve gone over two months AFib free. My point is I believe that the cause of AFib is not necessarily in the heart itself as my heart is healthy. However long term AFib does train the heart toward AFib so if the outside cause can be treated early on AFib may be able to be eliminated. Just my opinion of course.
Your case is very specific! Until now, I have not met somebody with parasitic cause for AF or arrhythmia, but it may be quite possible. What I find for interesting, and you can check it in HealingWell forum, there is Lyme disease among other Dysautonomia, together with Hepatitis. As far as I know, Lyme disease has a bacterial cause, and Hepatitis has a virus as a cause, so they should not be on the list. What I have noticed reading thousands of posts, is that MDs are not always sure if the person really has Lyme disease, or is it maybe something else, since the symptoms overlap with other disease...
Thanks for the forum info. I’ll check it out. Yeah, at least in the US the medical community is not educated on Lyme and the CDC doesn’t believe chronic Lyme exists. What I have found out through my research these “other illnesses,” MS, Parkinson’s etc. disappear after a person is treated for Lyme disease. It’s hard to tell. Kris Kristopherson had Alzeimers and was going down. His wife had him tested for Lyme by a Lyme Literate Doctor with the right tests, he had it and his alzeimers disappeared with treatment. 🤷♀️
Thanks for interesting information about treating Lyme and curing Alzheimer's disease. I suspect for a long time that there is some overlapping and that the diagnosis is sometimes under a question mark since the symptoms may be very similar. Hence maybe the Lyme disease among the Dysautonomia... The field of Dysautonomia is poorly researched, you can find more info on the site "Dysautonomia International", just Google it. All the best! P.
All the best to you as well.
Hi Steelheart, well said 👏 My mum has afib and has reached 93, hopefully continue to 94 in April. She doesn't worry which I think helps to keep the heart calm. I so wish I could be like her
I did the same and the private cardiologist referred me back to the NHS for cardioversion. It only lasted 4 months as I woke up one morning back in Afib. As my BP and pulse are very volatile which the cardiologist said would probably send me back into Afib, and I am not really aware of my heart most of the time,
Hi Motov I was diagnosed last year and after listening to the advice from friends on here and doing much research, I made an appointment to see an Electrophysiologist (a Professor) who put me straight and changed medication. Whilst I am still paroxysmal afib I know I am in safe hands and it is worth the £170 I spend every 6 months to have half an hour of his undivided attention. I had an excellent quality of life before afib and I intend to keep this as much as I can, so my advice would be to pay to see an EP. Oh, and if I go into an episode or I am concerned about anything, I can ring hid private secretary and she gets in touch with him and comes back to me quickly, more often than not on the same day.
I’m not medically trained but it’s my understanding that anyone in persistent AF can have a cardioversion at anytime PROVIDED they have taken anticoagulants for at least 4 weeks before and after the procedure. Perhaps this is something you should discuss with your Doctor or clinic. If your CHADsVASC score is 1 or less and you have not been prescribed anticoagulants, a cardioversion could easily dislodge a clot which may have formed and obviously this would be a major risk.
For any patient diagnosed with persistent AF, a cardioversion often forms part of a treatment plan to see if the patient can be reverted back into normal sinus rhythm and if so, whether or not they feel significantly better. If so, this means the patient may respond well to having an ablation……
I agree!! Just had a cardioversion after 17 years of AF...
Hi you say anyone is able to get cv in presistant but I have just been put on a ist.it is expected to be at least 4 months. Apparently they get 10 in ar a time 2nd Sat in the month. That will take me to 10 months presistant.
Yes, I understand that waiting times will vary and that can cause problems, all I am saying, in answer to the question, is that under normal circumstances, anyone in persistent AF can have a cardioversion. Hope you manage to get yours a good bit quicker than 10 months.
Me too. Cheers Flapjack.
Never did understand the science behind the CHADsVASC scoring.A person who is over 65, with no other health issues is given a score of +1
Females over 65 +2 because of gender.
Both considered stroke risks...so why isn't everyone prescribed anticoagulants at age 65?
I'm missing something aren't I?
Not really, even the medics acknowledge that CHADs is not a finite science. As I understand it, the reason for the difference is due to the effect that the menopause has on women……
Hi. When I was first diagnosed with AF 2 tears ago I had 3 cvs done in the first 2 months with the best result lasting 1 week in NSR. I'm now in fairly persistent AF but have always been asymptomatic. Ablations are suggested and I'm afraid things could go wrong. If the cvs didn't help 2 years ago, do you think I'm still a good candidate for ablations? I know you might not be a physician but you seem very knowlegeable, like most people on this site.
You are right, I’m not a physician so not medically trained and the knowledge I have acquired is from attending a considerable number of support group meetings. It’s important to bear in mind that speakers (who are qualified NHS specialists in their field) always talk in general terms so individual patient circumstances are inevitably different. I can see from your history that this is an issue you have been tussling with for a while now and you are wise to take a cautious approach. The advice regarding quality of life and lifestyle changes you have received from BobD and others has been excellent. Here in the UK, if an EP offers an ablation on the NHS, you can be fairly confident that there is an expectation of success, even if a further ablation(s) may be necessary. You are from the States, and from what we hear, the situation and motivation for offering ablation can be quite different. The general view is that the longer someone has been in persistent AF, the less likely an ablation will be successful so if your CV’s were carried out 2 years ago but you have remained in AF for the last 20 or so months, then this is likely to reduce the likelihood of success. I think, if I were you, I would try having another CV. You need to check with your physician, and I have made BobD aware of this reply, but if or when you revert back to AF, it will be much the same as it is now, ie asymptomatic. At least if it doesn’t work, you will have the knowledge that risking (albeit a small risk) an ablation is probably not going to be worth it.
Please remember I am not medically trained but I hope this helps. It may encourage others to comment which may help too ….
Very helpful and reassuring. One thing I've noticed is that it seems surgery is suggested more quickly and more often in the US than in the UK, for many conditions. I feel it makes it more difficult to get an objective opinion from someone who benefits financially from the surgical procedure.
Thanks for your reply.
You can say that, I could not possibly comment! 😉🤔😉
I’ve been on warfarin for the last seven years as I had a multiple episode of a DVT and bi lateral pulmonary embolism when I was 50. I was subsequently diagnosed with Factor V Lieden which is a hereditary blood clotting disorder that means you have a tendency to clot. It’s well managed and I have an INR that hovers around the 3.5 mark so anti coagulation is covered for the afib as well although nothing is ever guaranteed with DVT’s and strokes I know but I don’t think that should stop me getting further treatment for my afib?
Absolutely……..push for that cardioversion 😉
There's absolutely no reason why a cardioversion can't be attempted Motov. What sorcery is this? It's true the success rate is higher if it's done within 7 days! but seldom to never is it 'too late'!
I think the NHS are so “overwhelmed” that it’s easier to just take the easier route? I have an NHS cardiologist appointment in March 2022 which is about as much use as a chocolate fireguard, which is why I’m emptying by bank account and borrowing left right and centre to see a private cardiologist sooner to explore my options in more detail? Meanwhile, tomorrow is day seven of being stuck in afib but I remain ever optimistic that I might just “flick” back into NSR!
A lot of truth in that Motov! And wishing you all the best with a sudden revert to NSR!
Why don't you see a private electrophysicist (can't spell this morning! an EP as they are known here)? They are much better at AF than cardiologists who mainly deal with the plumbing of heart. EP's specialise in the electrical signals, which is what AF is a problem of.
Just wondering if you might try taking 200 mg flecanaide at night as after 4 days that put me back into NSR.
I would without hesitation if I’d been prescribed it! I’ve a private cardiologist appointment Thursday week now and that’s the one thing I’m pushing for as GP’s cannot prescribe it!
Okay. The best of luck to you.
Motov, go privately to see an EP much more value in this, I found the cardiologists minimally experienced in comparison. Most in the forum would agree....I think 🤔
One alternative to having a cardioversion is taking an Arrhythmia drug such as Flecainide as a PiP. This is used successfully by many (including me) and very often, a low daily maintenance dose can be prescribed to help keep you in rhythm. These are all things you should discuss with a specialist but I don’t think it’s something your GP can prescribe……
I discussed this with the doctor in A&E yesterday and they said it’s not an “ideal” drug of choice but you are correct that it can only be prescribed by a consultant and not a GP. I’ve read a lot about cardioversion treatment and it does seem to carry a lot of risk of both stroke and of afib returning? I’m personally resigning myself to the fact that I have probably slipped into persistent afib now so am pinning my future hope of NSR on an ablation at some point, and hope that a private cardiologist would be able to refer me back to the NHS for the procedure?
You do OK with Flecainide as PiP? Anything else bar anticoagulants? This strategy is on my wishlist.
I’ve had 2 ablations since 2016 and generally things are OK but I get very occasional episodes, maybe 2 a year, which are relatively mild and stop within in an hour of taking Flecainide as a PiP. I continue to take Diltiazem, mainly because my blood pressure is generally OK but can sometimes rise. There has been talk of having a 3rd but it’s on hold for the moment, review due end of November. Also take Apixaban.
Thanks. Same regime as mine then. I like Flecainide because I have more energy on it than the BBs and when I'm well I'm well. Time will tell for me. Gotta get that top-up done. 🤞
I take flecainide 25 mg twice daily and nadalol( beta blocker) twice daily. It has been controlling mine pretty well except for occasional ectopic beats. Sometimes my heart rate will drop into the 49’s and 50’s but doesn’t last long.
I’m due an appointment with a private cardiologist next Thursday and I’m really hoping I can get prescribed that as I’m pretty desperate to to return to NSR!
I don't know what flecainide costs as a private prescription, but no harm in asking s/he for an NHS prescription.
Good Luck in the process.
Similar situation (including heart bpm) pending cardioversion.
Any concerning symptoms besides bpm ? Are you taking any medication to control the heart rate and an anticoagulant ?
From my reading, neither cardioversion or ablation are guaranteed to permanently relieve afib. Often returns.
I am actually contemplating to forego the cardioversion at this time and continue to manage my symptoms (fatigue, heart rate) with medication.
Would like to hear comments of others.
Not taking any rhythm control drugs, just Warfarin for my Factor V Lieden which covers my Afib as well as I have a high INR range of between 3 & 4 and for the high bpm I’m on 2.5mg of Bisoprolol. My resting heart rate settled at 75BPM earlier and rose to 110-115 BPM when walking, I feel tired and a little out of puff but I’m literally just out of hospital after having a big dose of Bisoprolol and umpteen other test! I’ve heard that you can get used to Bisoprolol in time? As much as I hate being in persistent Afib it is easier to deal with than the sudden flipping in and out which was exhausting, unpleasant and made me extremely anxious!
Our heart rates are the same 🙂
Keep us posted on your progress.
From reading on cardioversion,
there is a 90% success rate initially, but an almost equal rate one will eventually return to afib.
I think you are on the right track with a private cardiologist appointment with Flecainide on your list of Q's.
Best wishes.
A private appointment would help, I am sure, but the problem with it is the cost of the nest investigative steps. An echocardiogram and a stress MRI would be the gold standard ways to look in detail at the anatomy and physiology of your heart. Privately, that would work out at a further £2000+. It's a route that I would go down, myself, if needed.
Steve
I agree with flapjack. Just had a cardioversion after 17 years of AF... only worked for a couple of days but trying again in a month using different meds.
Definitely! I've never self reverted and every time (bar one) have to have DCCV. Twice my local hospital refused to do it. I was left hardly able to walk for 5.5 weeks each time and during those two episodes spent 28 days in hospital in three bouts. Once I had the DCCV I was so deconditioned that it took 2-3 months to get back to full function. Obviously, I couldn't work for a lot of those periods too. If you are not on anticoagulants they like to DCCV within 24-48 hours, otherwise you need a TOE or 3-4 weeks of anticoagulants.
I find it helpful to take a list of all the previous efforts to chemically cardiovert me along, just to prove nothing works too!
Hello Motov, flecainide or other antiarrhythmics should be explored as a first line treatment choice for you to see whether a daily dose can revert you back to NSR. This would hopefully be a stop gap measure until cardioversion and perhaps ablation could be explored to provide longer term heart stability. Antiarrhythmics may be required post cardioversion and/or ablation to help support NSR. There are a number of antiarrhythmics out there but not an endless list by any means - do your homework though as the side effects can be challenging for some.Btw was on 4-5 day run of afib in past and was converted back to NSR with flecainide - there definitely is hope but you need a diff treatment plan sooner than later. Keep safe
I think you are right, I have made a private cardiologist appointment now for the 19th and the option of flecainide is my first question! By then I will have been in afib for nearly twenty days, so hopefully still an option? Twenty days however is way better than waiting for the good old NHS appointment of March 2022!
Probably the right move to go private in your current circumstances - I am not sure about the likelihood of conversion to NSR after mutiple weeks in afib using only flecainide - this is something to discuss with cardiologist or preferably an EP (other stronger antiarrhythmics like amiodarone may work but this medication comes with a lengthy list of possible serious side effects). Likely they would explore cardioversion with meds to support heart stability post procedure- again something to clarify with health professionals.
Well, unbelievably I self converted earlier this afternoon! I can’t say how relieved I am but I know I could just as easily flip back again at anytime so I’ll still be seeing my private cardiologist to discuss an action plan!
That is excellent news - glad to hear. Definitely discuss medication options (antiarrhythmics) and pros/ cons of ablation at the upcoming consult. Keep safe
I will thank you!
Or, don't go to A&E at all . . . They have never done me any good.
My hubby waited from December until beginning of August for his cardioversion and it worked with first shock
I had persistent AF and two unsuccessful cardio versions then an ablation which put me back to normal sinus rhythm nearly 3 years ago. I did pay to see an EP as they understand AF very well but some cardiologists do not. It did make things happen very quickly less than 12 months from diagnosis to ablation.
Just from my recent experience - I was in persistent AF for eight months before finally having a DCCV two weeks ago, which put me back in sinus rhythm. I did see a consultant privately not long after going into AF because an NHS appointment was some way off. However, I decided not to proceed further with the private path as I could see how the cost would mount up.
An NHS consultant put me on flecainide, which did not work, and then booked me for the DCCV, which was then cancelled but fairly quickly replaced with the successful appointment I had two weeks ago.
I was in a fair state of anxiety for most of the eight months I was in AF since I had the slogan "afib begets afib" in mind in my mind and wanted to be out of it as soon as possible. Of course, I don't know how long I'll be staying in rhythm but it is nice to be feeling better, however long that lasts.
For me, anxiety that sometimes became a kind of panic was, and that may well have cause to arise again, was the worst of the experience.
In my personal experience, the recommendations of A and E can be different to your cardiologist or EP. Even then you can get differences of opinion between them! I have been in AF for periods of weeks and self converted back to NSR so that can happen. Also had a cardioversion after being in AF for 3 months. So it can be done! Keep asking the questions and push your cardiologist/EP or even arrythmia nurses for answers to your questions and treatment options. Also ablation was always and still is (for me) on the table. For peace of mind and quickness, I would be tempted to see someone private if you are not getting anywhere with NHS. Waiting times seem to be quite long in some parts of the country. ☹️
I too had a similar episode in June of this year.Heart rate of 130 so went to A and E who diagnosed atrial flutter and gave me large doses of Bisoporol to try and get the rate below 100 so that they could send me home. This failed so admitted and continued with the daily 10mg dose along with Dioxigyn eventually after 6 days had a catheter ablation and sent home the same day. 3 months later all’s good and just on 2.5mg Bisoporol, 50mg Fleicanade twice daily and Apixaban twice daily. No flutters since so hope all works out well for you.
My A&E weren’t really interested and they flat out refused a cardioversion and didn’t prescribe Fleicanade either. Just dosed me up on Bisoprolol and sent me home once my heart rate settled to 95 BPM. I’ve now been in AF for eight days so think it safe to say I’m fully upgraded to persistent AF now! I’m taking Bisoprolol at 2.5mg a day in the morning but I’ve decided to split the dose to 1.25mg in the evening just before bed and another 1.25mg in the morning as laying in bed my heart palpitations regularly hit 110 BPM and wakes me up. I’m on Warfarin to with my INR sitting at around the 3.0 mark. I’m back working and trying to carry on as normal but get out of breath a lot easier and get occasional chest and back pain. I’m so disappointed and feel like I’m just left bin the wilderness! I have a private cardiologist appointment next Thursday and I’m praying he will start me off on the Fleicanade just to see if it’ll get me back into NSR, even if only for a short while!
I saw the consultant first after 5 days in hospital and plied full of drugs. He never suggested cardioversion and said that ablation wait in NHS was 3-4 months. Fortunately I have private healthcare through work and mentioned that to see if he could do it privately and quicker. 2 days later he squeezed me into his Friday surgery and I was literally rushed into a spare slot at 9.45 and back on the ward at 11am. Worth asking about ablation but mine was flutter not AF and that’s more difficult to address through ablation as apparently they need a few attempts to locate the strug node
I had a successful cardioversion after waiting 20 months, don’t let them fob you off
Good luck
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