New suffer of AF

[Bollox2AF]

Hi Folks,what a Godsend this forum is.i have recently been diagnosed with AF,after roughly two years of the "shakes",it started at night resting in bed,the first attack when you have that wtf is this moment,heart going crazy,then the shakes came more regularly,I went thru all the same rigmarole which we all seem to have done,monitor-nought,monitor-nought etc,till eventually about 4 months ago one of the little mobile monitors picked it up ,then you phone in the data etc,that confirmed the diagnosis..Then seen specialist,put me on Sotalol,that made it worse,it sort of "masked" the attacks at first,then for me anyway it just didn't work,the attacks came back with a vengeance ,went back to GP,,by luck I got a cancellation appt with the specialist a couple of weeks later,he changed me on to 50 mg flecanide twice daily...last week heart pulse rate sort of "locked on" at about 160 bpm,wouldn't shift,went to GPs,he sent me to hospital,kept in overnight,increased dose to 100 mg twice daily,got pulse down to about 125 bpm,put at the same time I had to start on Warfarin,and cardiologist now recommend's cardioversion to put the heart back into a normal rhythm,as he reckons my heart itself is ok,but needs electric shock to help it rectify itself,but I need to wait until the warfarin kicks in and my blood is at the acceptable level,which is roughly three weeks,after all the normal tests are done.This is definately a mysterious illness there are that many permutations of treatment,I have never took as many pills in my life,tho Iam certainly never going to let it beat me,I do kinda have reservations about the cardioversion,..does it stop the attacks permanently?..and to be quite honest,I ain't that sure that the Flecanide is the answer either,even in a strong dose..Anyone any advice on cardioversion,how or if it worked for you...Sorry about the long post,thanks for reading,and the best of luck to my fellow AFr's....Terry.

[Dave1961]

HI mate. The results from cardioversion are as varied as the triggers for AF.

Some people say in NSR (Normal Sinus Rhythm) for months others revert to AF within a few days - it really is a bit of a lottery.

I was cardioverted twice. Once in an ambulance when my heart would not slow down from 250 or so bpm and the other time in emergency. After both of these I was back in AF within a few weeks.

My attacks have virtually disappeared in the last 5 months but I attribute that to finally finding out about magnesium. As soon as I started supplementing myt attacks basically vanished.

Good luck with it

[poppystorey in reply to Dave1961]

Hi I find your post very interesting can you tell me anything about magnesium supplements ,thankyou poppystorey

[sunigirl in reply to Dave1961]

Hi Dave 1961.

I am interested to know what type of Magnesium you take and in what amounts. I have always been unsure which type to take and would appreciate info from you. Best Wishes

Susan.

[IsobelBrown54 in reply to Dave1961]

Hi Dave,

Am interested to hear about your magnesium experience as am thinking of trying magnesium myself.

[Polski in reply to IsobelBrown54]

If you sign up to follow Dave1961's posts you should find the info you are looking for re Magnesium. Magnesium oxide should be avoided as it is not very effective, but all the others seem to be about the same.

[Beta44]

Cardioversion sounds dramatic but is actually a simple safe procedure. I've had two and they both put me back into SR. Not permanently as I have paroxysmal AF which normally self terminates with the help of Flecainide. If it suits you then this can be a very good reliable drug. I have been taking it for more than twenty years with no apparent ill effects.

[Bob56]

Hi Terry, I suffered from AF for about 20 years before the medications eventually couldn't halt the attacks.. My last attack lasted 7 days and it was decided that I needed a cardio version. The procedure itself is short and under and anasthetic but whilst it usually restores the proper rhythm others will tell you it isn't necessarily a cure in itself. It might do the trick for your particular situation, and I hope it does, but any underlying condition will still be there. If your diagnosis is still relatively recent, your doctors may well carry on with a medication regime before they suggest any other procedures such as an ablation.Much depends on your individual situation, symptoms, degree of discomfort etc.. Many ,like me have had to pop plenty of pills over the years and you can get used to them over time, despite the annoying side effects. I have had Flecainide for many years , until it finally wasn't able to help me anymore..The key is if they work sufficiently well to give you a normal life and for how long , If medication doesn't prove helpful or doesn't suit you then treatments like ablation will be discussed Both the medications and the procedures have come a long way since I was first diagnosed. You are in very good company. Good luck

[CDreamer]

May I suggest you read the literature on the AFA site, link on this forum. You should be informed as to treatment options which include drugs, cardio version, lifestyle changes and ablation.

By the way, Sotolol is no longer recommended for treatment of AF but it seems that many doctors are still not aware of this.

[bebe7637]

Terry , so sorry you are suffering.

AF is a pain in the ----- but it affects us all differently.

I am now in permanent AF.

At this stage I decided against Cardioversion as it doesn't seem to be permanent.

I am on Digoxin and the anti coagulant Rivaroxaban.

Are you taking any anti coags ?

This is important as it helps to prevent blood clotting which it seems is the big problem with AF.

This is only my side of things but hope it is of some help.

Good luck and health. Bebe.

[BobD Volunteer]

Hi Terry and welcome to the mad mad world of AF. By the way it isn't an illness it is a condition. Nit picking maybe but as a condition it has little commonality amongst patients Your heart, though mechanically normal, has some strange electrical pathways which cause this irregular beat. These can sometimes be controlled by drugs which change the way the cells respond to the impulses either by slowing down or blocking the responses. Drug therapies can be either rate control (beta blockers etc. anything with a lol on the end) which aim to slow the heart when in AF, or rhythm control drugs like flecainide, propafanone or amiodarone.

Cardioversion is like re-booting your computer.It is not a cure for AF but can stop the symptoms whilst doing nothing for the underlying pre-disposition. The patient is anaesthetised and a direct current sent across the heart via two pads either across the chest or front and back. This re-aligns all the cells so that they start beating in unison returning the heart to normal synus rhythm. This can be affective for varying amounts of time. Some people it may last a year or two others two minutes depending on how entrenched the AF has become. The longer the heart is allowed to be in AF the more it will want to be and the mantra is AF begets AF. Long term there is the danger that the heart will become enlarged and less effective so obviously whilst AF won't kill you , it can change your life. Anticoagulation is vital since AF increases the chance of stroke by a factor of five.

Ablation involves the electrophysiologist attempting to block the rogue pathways within the heart either by surgical or minimally invasive means. Surgical ablation is uncommon unless there is other reason to open the chest for example by pass surgery but catheter ablation is much more common. There are very good fact sheets available from the main Af Association website which explain the various procedures but basically they can use either heat (RF or laser) or extreme cold (cryo) to create scar tissue across which the impulses can not travel. Cure is an emotive word but the procedure can give patients many years of freedom from AF and few ablatees regret the choice.

Please read as much as you can from AF A website as knowledge is power and frankly AF is one condition when we all need to become experts on ourselves as otherwise we often get fobbed off by doctors who are not up to speed on the latest developments. For example sotalol was removed from the list of recommended drugs a year ago due to the unwanted changes it can cause to other areas of the heart.

Hope some of that helps.

Bob

[Rellim296]

Nothing to add - except I love the name. Right attitude!

[Hidden]

Hi! I think Bob D has said it all really.

I agree particularly that you should gather as much info as you can on AF & be YOUR expert on YOU . You may be surprised at how little some medics know about AF !

I was diagnosed 22 years ago & during that time have had many hospital admissions , 14 electrical cadioversions ( DCCV 's ) & 3 ablations. Very scary to begin with so I understand how ' newbies ' feel. I would say that for me my cardioversions were an absolute godsend & worked every time, the latest few requiring only one zap. ( last one about 11 weeks ago ) Most of the gaps between were about one year but I did last 4/5 years at my longest! I would certainly ' go for it '.... nothing to worry about at all.

Regards Sandra

[Bollox2AF]

Thanks so much to everyone for their very kind and very informative replies,it is so reassuring to know Iam in such good knowledgable company to help me thru this jungle of AF..I fully intend to learn as much myself about this condition,as it seems so varied in the way it affects different folks.My anti-coaligant drug warfarin seems to be kickin in well after a few days,tho I was advised my reading must be between 2/3 for the 3 week duration before I go in for the cardioversion,hopefully I can come back with some good news in the near future,if Lady Luck smiles on my cardioversion..Again thanks for helping a "newbie"understand a bit more of this scary condition,and that Iam not alone,this forum is magnificent...Terry.

[Flaka]

When my AFib for was diagnosed I was sent to a cardiologist and he totally over medicated me. Had me on Digoxin, flecannaide which he kept upping the dose on cardizem and Pradaxa 150 mg twice a day. All this did was make my condition worse so asked my Primary Doctor to refer me to another cardiologist for a second opinion. The new cardiologist took me off everything and put me on 25 mg Metoporol twice a day with daily aspirin. In the meantime I also learned of the wonders of magnesium so started taking magnesium in tablet form everyday and also taking a bath in Epsom salts which have magnesium everynight and now I am doing great. Only have an AF episode maybe once every 2 weeks and it never lasts more than a few hours. I have learned to eat a banana and take a supplement called L-Arginine and Taurine which both help tremendously.

[jayedeebee]

Hi, I was interested to read your question about cardioversion and the possible results. My EP recommended that I have a cardioversion. I trotted off after my appointment and could have kicked myself for not asking more questions. She'd put me on amiodarone in preparation. Anyway I composed a letter and asked for success rates, percentages and of course dangers. She duly responded and said that cardioversion has a 62% success rate, but it is not cure and I could revert to AF immediately or I could go on for months. She also outlined the fact that it could cause a stroke etc. As you can imagine I wasn't encouraged and so cancelled my appointment and said I'd prefer the rate control method. I seem to manage my AF fairly well. I do have days where I can barely breathe and am totally exhausted. But the worry and fear of wondering if I would revert back to AF was going to happen all the time would have driven me mad. I am in permanent AF and have been so since August last year. I have had quite a cocktail of different drugs and now after 12 months, I am exactly the same medication as I have been for the past 8 years (apart from Apixaban) . I have good days and some really bad ones. But I'm happy with things as they are. Now that the bisoprolol has been stopped, I'm beginning to get a bit of energy back. However, I must ask my cardiac/arrhythmia nurse about magnesium.

[Lainie2875]

The Cardioversion can only be done if your in AF and all it does is flip you back to normal at that time, not heard anyone say a cardioversion cured the AF like you I was hopeful it was going to be the answer.

It's all scary and confusing and my experience has been they all know the job they are doing but no one knows how that all effects you as the patient.

Sorry if this is not the reply you hoped for best Wishes

Elaine

[Bollox2AF]

Thanks Elaine and Jayebeedee,to be honest Iam looking forward to my cardioversion,,I don't know what type of AF I have,but I don't have dizziness or feeling breathless etc..just my heartbeat all over the place,especially at rest,and even being on 200mg daily of flecadin for the last 3 days ain't stopped it,plus the warfarin of course...funnily enough and to be quite honest,since I have been diagnosed and put on medication,my condition seems to be agitated by the medication,obviously my heart rhythm is the problem,the electrics that is,that's why when I was hospitalised last week with the bpm prob,the cardiologist suggested cardioversion right away,you see. was on a heart monitor in hospital the full time I was in there,which obviously showed up the electrics as the prob..but they don't tell you much,to be honest...anyway time will tell...I have to admire all my fellow sufferers on this forum,with the advice and wisdom they pass on,and their fortitude in handling their own condition...God bless you All....Terry.

[BobD Volunteer in reply to Bollox2AF]

I think it worth mentioning that the main reason many doctors suggest the first DCCV (cardioversion) is to see if you can be put back into normal synus rhythm. As mentioned this can last varied amounts of time but shows that the AF is not permanent which is important because in that case an ablation may well be successful. A lifetime of nasty drugs is not what you want so ablation becomes an attractive option for many people. Obviously anticoagulation may continue for life as stroke risk remains even after successful ablation but QOL is greatly improved.

Bob

[Bollox2AF]

Thanks Bob,your posts are so informative,and well put ..Cheers Terry.