I've just been diagnosed with paroxysmal AF and, with a very supportive GP, I'm starting on the road to find a treatment that suits me best. I've read a lot but would love some tips on questions I should really be asking.
In hindsight I had probably had infrequent episodes of AF that just left me feeling a bit unwell which I put down to other causes. for some time. After one episode lasting about 3 hours when I felt quite dizzy and had to lie down, my pulse reaching 120, I visited my GP who organised an ecg (normal), chest X-ray (normal), blood tests (normal) I was waiting for a five day cardiac monitoring test when I had a major episode, my daughter called an ambulance. An ecg immediately showed AF, with my heart rate peaking at 200. I've never felt so ill in my life. It reverted to normal in hospital after about 5 hours without treatment.
My locum GP initially put me on sotalol, but I had incredibly bad side effects. On his return my own GP changed this to bisoprolol 2.5 mg. He reduced this to 1.25 mg due to continued debilitating side effects warning me that this might not be enough to prevent further episodes. Happily, no more major episodes yet. I'm already on bendroflumethiazide and Losartan to treat high blood pressure. I'm still feeling exhausted, short of breath on the slightest exertion, aching everywhere, problems sleeping, have developed acid reflux, and feel incredibly low in mood. At times I feel like stopping the beta blockers and taking my chances on further episodes as I felt so well between episodes before. I'm normally a very active happy person with a full time job but am struggling to maintain anything like that lifestyle.
My GP has talked about anticoagulation but felt it was more important to try to stabilise me on the beta blockers before introducing any more medication that might make me feel even worse. I'm apparently quite low risk for afib related stroke.
I'm due to see him again in a week, and I'd really appreciate any suggestions on questions I should be asking, any options I should be considering or tips on anything I can do to help myself.
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val757
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Welcome to this informative, supportive forum. I was diagnosed with PAF 3 years ago and my scenario was very similar to yours. Like you, I'm being treated for hypertension (I'm on three meds for this ) During the first year of AF diagnosis,
I to was given a beta blocker which gave me very unpleasant side effects including horrible vivid nightmares. My cardiologist changed beta blocker to diltiazem (an anti arrythmic) and this drug did the trick for me. In the first few months since diagnosis, I've had a few AF episodes but for the past year (2015) I've been AF free so I'm keeping my fingers crossed. As someone posted not so long ago, AF is always lurking in the wings - the episodes however scary do pass.
Val, I hope all goes well for you and as has been quoted many times - don't let AF rule your life.
Cheers,
Musetta
Hi Val,
I was diagnosed with paroxysmal AF (pAF) in Jan 2010, aged 65. No previous personal history of heart issues per se, but was on Simvastatin and Ramipril (high blood pressure) at the time but some irregular family history of strokes, diabetes and AF - but not me. At the time I'd only been in hospital once ever for surgery (torn right knee cartilage) and visits to A & E arising from DIY mishaps.
In the 2 years running up to pAF I'd had shedloads of palpitations. They were so regular I tried to get an ECG done but this was impossible as I was a bus driver on shift work. I might say, that in the early stages of pAF I felt very much like you do now. But as my system adapted to my medication life improved. I might add prior to AF I was on BOTH Ramipril and Bendroflumethiazide but the Cardiologist took me off Bendro ....... - don't know why, maybe a conflict with Bisoprolol or Warfarin ?? Don't give up the beta blockers. What time of day do you take Bisoprolol ?
I was diagnosed in something like 9 hours from onset and treatment started. I too had a supportive AND proactive GP at the time and fortunately, a brilliant A & E team at hospital. I was kept in for 6 days while they ran all manner of tests then sent home with additional medication - Bisoprolol 5 mg and Warfarin. I had and still have no problems with Warfarin. Initially shedloads of problems with Bisoprolol, which I had been originally told to take first thing a.m. - after I had a moan they changed it to take at night. I've not had a problem since - ever. Ever!
About 4 months after diagnosis I began to associate the onset of pAF with food I'd eaten. I began to experience burping, massive, massive bloating bring a degree of pain around the heart, intestinal gurgling, diahorrea etc. etc. Went to GP who ran some basic tests for IBS and Coeliac disease - all clear - did I want more tests ... no thanks said I.
I then consulted a Nutritionist who put me on a dose of Probiotic powder, told me to go gluten and wheat free and also recommended I look at the FODMAPS diet (suggest you Google it). Problem solved. Cause of pAF - no doubt now - all the usual things like bit over weight, high blood pressure and stress AND the outsider - food.
I now get one or two AF events a year ( last one I recorded was in April 2015) - and very short bursts at that. I have reduced weight a bit, but, not that much. At the time pAF hit my average BP was around 136/85 and heart rate 88. Nowadays BP is averaging 126/75 heart rate 64. I have also reduced my booze intake, but again, not that much.
The link here is a dysfunctional Vagal Nerve (again Google it). I'm now 71 and still maintaining the diet. I still hold my PCV drivers licence and drive part time a bus 3 days a week. As a holder of a PCV licence I have to have an annual medical by law, no problem.
Hope this is of some help, good luck and may the force be with you.
Hi Val there are some great people on here my hero particularly is Bob who will give you formation and support. All I want to say is find a cardiologist or Ep who you trust. Af is scary life changing and csn be isolating. However there are many treatments out there and you do get your life back but with the help of either the right regime of meds or medical interventions. I am on a whole regime of meds some of which you mention. I have used this forum so many times it has been a complete blessing. When I told people what I had Paf I was so surprised how many other people I knew then said that they had been a sufferer. I am well managed cut down work looked into mindfulness which helped loads helps to live in the moment rather driving yourself mad worrying about what happened in the past and what might happen tomorrow. So easy to say all this as I am in a much better place and you will be too. The folk on here are brilliant. Take care Chris
Welcome to the forum, if not to the craxy mixed up world of AF and it's effects and symptoms. You sound like you've got a good GP, BUT you really need specialist advice at this stage and that will only come from an EP (Electrophysiologist) and the most important thing your GP can do right now is put you in front of one.
Whenever you start beta blockers, sotalol or bisoprolol, you are going to feel tired, and with the added pressure of the diagnosis (and don't underestimate the phsycological demands of that) it's going to make you feel weak vulnerable, and frankly exhausted.
The good news is that many of us come through this, we find the cocktail which works for us and controls our AF to some extent, and more importantly we get a treatment path which we and our doctors are happy about. You will get there I am sure.
Hello Val. Yes this is a brilliant site where no question is too much trouble. I'm surprised you've not been started on anti coagulants. Most AF or PAF suffered are it seems to me to prevents stroke. I'm a recent sufferer having had episode following brief ectopicd to a major AF on Xmas day and seen at a and e. I too work full time. Do s lot of exercise etc. Second episode was last week. I'm on csndesartsn for bp and Apixaban to prevent stroke. I Recommfnd looking on YouTube dr Sanjay Gupta. I take magnesium every day.now. I do believe it helps. I think my AF linked to alcohol which gave poor sleep. I've had echocardiogram and seen a cardio privately. I highly Recommfnd getting the alivecor ap for your phone. Expensive but worth it. V v v good luck elaine
Hi Val and welcome. AF is very scary and dealing with anxiety is a major part of having AF so you definitely need to find strategies such as relaxation, mindfulness, CBT - or doing anything that gives you pleasure as when you pleasure yourself you have what is called an endorphin effect which counters the stress hormones which can directly affect AF - that is what you can do for yourself.
It often takes a while to get the right combination of drugs - many people cannot tolerate Beta-blockers - they are rate control drugs -not anti-arrythmics, I did stop taking them as I found the side effects, including depression, worse than the AF. Drugs are not the only treatments so please do look at all the possibilities.
Personally I would be more concerned about being on an anti-coagulant than anything else, information, information, information will empower and the best way to inform yourself is to visit the AFA website and download their leaflets and not just take your Doctors' word for everything.
Most people with a diagnosis would see an Electrophysiologist - the electricians of the heart - (known here as an EP) there is a list on the AFA website, it wasn't until I saw an EP that I received any clear, really knowledgeable information and advice.
This group is a great bunch of people who will help and support when you get down so keep posting.
PS - any doctor who prescribes beta-blockers has never taken them - I have spoken to those who have and they all said they had no idea how debilitating they made you feel. Only my humble opinion of course - I am sure there are people on this site for whom they do work - I definitely wasn't one of them.
I have Paroxysmal AF for 18yrs now,I am taking a Beta
blocker,Alpha blocker,Statin,Candesartan and Rivaroxaban,last one to prevent Strokes.
I am also taking Flecainide as"pill" in Pocket"which is prescribed by Cardiologist,I take 300mg all at once when an episode comes on only.This works very well
for me within 40mins to 2hrs.I keep very well and having pip gives me greater confidence,carrying it with me at all times.
Hope This helps Val,letting you know what can be done,and help you feel better and get on with your life,try not to be afraid of this condition.Good luck and keep well.
Thank you so much to everyone who replied to my post. I feel more positive already knowing there are people out there who've gone through the same thing and have come through it. And thanks in particular for the suggestions for self help - I need to feel there is something I can do myself to improve my quality of life which frankly at the moment is pretty poor in comparison to pre-diagnosis. I can't even enjoy shopping trips due to exhaustion! I'll try out your suggestions and ask more questions when I see my GP next and let you know how I get on. My thanks and best wishes to all of you.
AF is a vary scary thing but it won't kill you although it might feel like that sometimes. The important thing is to make sure that you educate yourself by reading all you can from AF Association website where there are so many fact sheets as knowledge is power. One needs to be proactive and engage with your doctors otherwise you are just a customer not a partner in your treatment.
I am sure that your GP is supportive but the fact that he first prescribed sotalol shows that he is not the best person to treat you as that drug has not been recommended for treatment of AF since 2014. Also beta blockers like bisoprolol do not control AF or prevent events they merely slow down the heart so that when you do have an event then the rate does not go too high. Sadly this appears to be the fall back drug of choice in primary care.
I would take issue with you about anticoagulation. Many people refer to this as blood thinner which it is not. Anticoagulants help to prevent clots forming but they do not thin blood. Unfortunately this latter term gets thrown about and serves in my view to confuse the issue and make people think that they may get spontaneous bleeding because their blood gets thin. AF makes us five time more at risk of stroke than those without it so you need to consider your options here very carefully. There is a system known as CHADS or CHADSVASC which takes risk like heart disease(C) high blood pressure(H) Age (A) prior stroke or TIA (S) and gives you a risk score. If you go to AF Association website there is a calculator that you can use to workout your own score and if it tells you that you need it then please get anticoagulated as soon as possible . AF may be unpleasant but it is a walk in the park compared to a stroke.
OK so once you have read and read and think that you understand AF you will be at the beginning of your journey and will then understand enough to realise how little you actually do. You will read of others here with completely different symptoms and problems because it is such a mongrel condition. You do need to see an expert and normal GPs and most cardiologists are not. You may be happy to remain under the care of your GP for now but AF is one of those conditions which tends to progress so if and when it does then you need to go and see an Electrophysiologist-- an EP as these people are the ones who actually understand AF and how to treat it.
In the meantime I can say that many people get greatly improved quality if life (QOL) by an in depth scrutiny of their lives and lifestyle. A reduction in reliance on meat products and processed foods, reduction of alcohol consumption. stopping smoking, lowering stress levels, etc all these things have been known to reduce severity or frequency of events. In fact far from reducing life expectancy AF may well improve it due to the changes which you can make with this hard look.
You are amongst friends here so if you have any question then please ask and we will try to help.
2008 at the Doctors. Diagnosis Hypertension. Prescription Pad and a script written for BENDROFLUMITHIAZIDE (diuretic). Fortnight later I experienced my FIRST AF. Into A and E. DC Cardioversion. Collapsed on Ward Floor. Pacemaker fitter. Buggered about for the next 7 years and Catheter Ablations in 2015. AF is progressive to permanent AF. AF is a bad life experience and is resolvable for most people in the right hands. But it takes the right hands. You don't need a Cardiologist (Plumber) you need an Electrophysiologist (Electrician). Horses for Courses. Even the Cardiologist said it was a wiring problem. The Cardiologist in Norway advised immediate Catheter Ablation!!
Soltalol by the way is a NO NO. It was pulled out under the Atrial Fibrillation - Management. NICE Guidelines 18th June 2014. 9Google this) Read the blog below "New Diagnosis" under "View 27 more" Davedug.
Val757 Get that anticoagulant in place immediately and keep reading this blog.
I can't really add to all the other helpful posts but as you mention breathlessness I just wanted to say that if you have asthma at all beta blockers are a nono and Diltiazem (calcium channel blocker) is used instead. This may have something to do (I believe) with the widely recommended magnesium - calcium and magnesium need to be balanced in the body.
I was diagnosed with PAF about 15 years ago but only recently needed an ablation because I developed another heart problem so you can live (LIVE) with it for quite a long time if you are lucky.
I think you need to see an EP and start medication from ground zero. Bendroflumethiazide and Losartan together are almost bound to make you unable to take any beta-blocker or Sotalol/Dromedarone. What is the bendroflumethiazide actually being taken for - it may be you can control bodily fluid retention another way ?
I'm on bisoprolol 2.5 mg and 100mg Aspirin (Disprin Cardiocare).
Do not stop your meds without consulting your doctor. Some people on this forum said taking your bisoprolol in the evening may help with the side effects -ask your GP about that- it might help a lot.
Do some research about who the best EP (Electrophysiologist) is in your area, but it's worth the trouble if you have to travel to see him/her. I did my ablation 400 km from where I live, that was in 2003 and it was worth it (not saying you have to get an ablation). Get to the best EP, research them - it's your heart and life.
Some GP's may downplay the seriousness of AF, but it may lead to stroke, get all the information.
Ask for your medical records, Tests and Images. Give to your EP.
Take a friend/family member when you go and see your doctor, they can help with understanding his answers.
Take lots of notes.
Think about what you eat/drink and tell your doctor. As mentioned above caffeine and alcohol are triggers, some energy drinks and medicines may also have "trigger/stimulants" elements in them.
Like beancounter said, don't underestimate the psychological effects, many people have anxiety attacks after an AF episode. Ask your dr.
Make a list of questions before you go to the Dr, and ask them all.
Ask him what he says your CHADS / CHADSVASC score is. Do your own evaluation.
What does he say about your heart future, (cardio version, only meds, ablation, ) or none of them, and is he going to use a 24h holter?
Welcome to our mad world of AF!!!! You will learn quite quickly that AF, medicines, etc affect different people quite differently and also, importantly, one thing that often gets missed is it can affect the same person quite differently from one day to the next. A few points that I believe are absolutely key (one or two repeats of f things from above where I believe they are key):
It is very important that you get your GP to refer you to an EP NOW because it will take some weeks. Don't let GP say xxxx is a good cardiologist because they are not the specialists. Also your GP, no matter how brilliant, is not the best to deal with AF. There are medicines they are not allowed to prescribe first time off.
Using a rough analogy if you had a problem with your electrics in your house? Would you call in (A) an electrician or (B) a plumber [often know a little about electrics because a gas boiler needs electrics] or (C) a general builder? Answer is of course (A). In the medical world (A) is an EP and (B) is a cardiologist and (C) is your GP.
If you can afford it go and see an EP for the first time privately. An initial consultation will cost circa £150 to £200. Then you can decide whether you have some tests done privately which may cost anything from say £50 to £250 and then get referred to EP on NHS. Alternatively after initial consultation get referred straight to EP's NHS list. Take a copy of all ECGs and other test results with you.
Bisoprolol is a medicine that takes time to settle and the body acclimatise. I was told, and it happened to me, that I was only given it in 1.25mg step changes with 4 weeks between changes. At 1.25mg you are on the minimum dose and would be suprised if that caused all your problems. I ws told that the reason Bisoprolol is a morning dose for almost everyone is so it limits HR during the day when it gets higher.
AF itself can, in many people, cause the problems you describe and also circulation problems.
Get your GP to do a full set of blood tests now (if not already done) which includes liver, kidney, thyroid, cholesterol, etc. For many medicines you need a repeat set after 3 months, possibly at a further 3 months and certainly at 12 months after first. Bloods often fall through the gap and ther is no reminder system.
Keep your own file with copies of all tests and correspondence sorted by type (ie all ECGs together, latest on top. You have to manage it because records in the NHS are normally unique to each hospital, each GP, etc.
I have been on persistant AF since about Feb. 2015, with a few one off incidents before that, which I did not understand, and only detected via a Polar heart rate fitness monitor. My background is that I turned 60 years in July 2015 and have always been pretty fit. I have probably increased vigorous exercise since retiring 3.5 years ago, and this may have triggered the AF.
I have been on Rivaroxaban 20mg for quite a few months, as an anti-coagulant, without any problems. I think it is pretty general to go onto an anti-coagulant. In October I had cardio-version, the electric shock treatment, and it worked very well, for about 5 days. At that point I was put onto Beta blockers, Bisoprolol 2.5mg. I found this totally wiped me out, totally lacking in energy. I stuck this for about three weeks and decided to come off it. The Bisoprolol had generally capped my pulse at about 135, though there had been occasional higher spikes of pulse. After I binned it, performance reverted as it had been for most of 2015. Despite much easier exercise regimes, cycling, jogging walking, pulse ran high and sometimes spiked at or slightly over 200. Some of this was quite random.
As for Bisoprolol, it did not work well for me, but it seems AF cases are very individual, and I am not qualified to advise. I have been told I am at a very low risk of a stroke. Maybe this is a factor in considering this issue.
Had ablation on Friday 22.01.16, and that appears to have sorted the AF, though I understand it sometimes needs 2 or 3 ablations, so I'll be looking carefully at ways of reducing risk of recurrence.
This forum is a very useful way of hearing about individual experiences of AF, and a very useful supplement to the all too brief medical consultations.
Thanks to all the helpful advice and suggestions I feel I'm starting to take back some control and I'm already feeling not quite so scared, although I might feel a bit differently if/when I get another major episode of AF.
I'm think I'm getting more used to the bisoprolol and getting fewer side effects although I'm still on the lowest dose, so I'm trying to be patient and stay calm.
For the benefit of any other newbies below are the things I'm trying out so far, I'll let you know how much they help or not.
I've watched some of the videos by Dr Sanjay Gupta which are incredibly informative and reassuring - I plan to watch the rest over time
I've started taking magnesium supplements as suggested by some
I've also started trying a more healthy diet with fewer processed foods - at the moment I'm trying out the weekly meal planner on the Care AF website
I've bought an AliveCor which I have fixed to my iPhone - I've found it reassuring to check and know I'm not in AF when I'm feeling unwell, much easier and more reassuring than just checking my pulse, and anyway I like gadgets! Even my GP was impressed by it. Knowing that if it shows I'm in AF I can save the recording and show it to clinicians helps.
I've done some research on anti coagulants and am unsure how the need for monitoring with warfarin will fit in with my job and lifestyle generally so will discuss the newer anti coagulants with my own GP next week. Any advice on this would be welcome. I'm not going to see the locum again - the one who prescribed the sotalol - so I may have to wait a few days to see my own GP.
And I'm also trying to reduce stress levels generally. I've discussed with my employer and so far they've been very supportive as I have what is normally quite a stressful job. Not sure how long that will last so I may have to consider changes, not at the moment though, that would be too stressful!
Today feels quite a good day, yesterday not so good, so I'm planning to try to make the most of today.
It's still very early days for me but with the advice, support and encouragement from you out there I feel I'm just starting to turn things around a little bit.
So, thanks again to everyone, I'll let you know how I get on and hope it's helpful for other newbies.
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