Hi Everyone I am so pleased to have found this forum. I was diagnosed with AF four months ago after being taken to hospital in an ambulance

[Janshep]

I would welcome any advice anyone can give me .After being taken to hospital I was immediately put on bisoprosol and Xaelto 20mg . I have an occasional episode when my heart races but get a lot of palpitations and fluttering and have dizzy spells and breathlessness . I am waiting for an appointment with a specialist but would be grateful for any advise anyone can give me

[BobD Volunteer]

Initial treatment is about right and average.

Best advice is to go to AF Association main website and read all you can about this mongrel condition as knowledge is power,. That way when you do see the specialist you can talk to him/her from a position of knowing at least something about yourself and what is going on. Do ask us anything you need to know as we have all been there! AF is a long journey but you have great travelling companions here.

[Janshep in reply to BobD]

Thanks Bob

I am feeling a little better just reading so many positive comments on here . I don't normally worry about myself but am having trouble sleeping and getting myself stressed which makes things worse and am petrified of having a stroke 😒

[OldSarge in reply to Janshep]

Your response to your first episode is normal, this is a scary monster you are dealing with. I have been living with it about 2 and a half years. I am on Flecanide 200mg a day and it more or less keeps it down. Good advice from CaroleF about sleeping on your right side, I found out that sleeping on the left triigers an episode. Be prepared for the ups and downs this beast will present to you: feeling good and normal and full of life, the next minute knocked down by an episode. I cannot say I ever get used to it, but I have learned to expect it. Booze will definately trigger it in some, as well as coffee, and in my case eating a bowl of ice cream. As time passes you will learn what your triggers are and that helps. I wish you nothing but success in this new challege, and although I do not know you I know what you are feeling. I just said a prayer for you, and wait for God to answer.

[Janshep in reply to OldSarge]

Thank you for your kindness xx

[Hidden in reply to Janshep]

I,m 70 and experiencing exactly the same thing,admitted to hospital in Feb and given bisoprolol 1.25 mg, body has started to get used to it and getting a few breakthroughs of missed heartbeats during the day. Awaiting an appointment for BARTS hospital for possible ablation. Had this for many years until the attack of svt in Feb when it was 197 beats a minute and wouldn't revert back

[CaroleF]

It's a very worrying time in the initial stages after diagnosis; I think everyone here understands that. BobD's advice about reading the patient literature on the AF Association is excellent (as always).

In your reply to him you say you are stressed (very understandable) and finding sleeping difficult. You may find it helpful to cut out coffee and alcohol, not to eat too late and to sleep on your right side.

I'm not really very well informed about stress-reduction techniques, but there are others here who have lots of good ideas and there are plenty of posts on here already about that but I'm sure no one will mind a 'refresher'.

Do post with your questions and people will do their best to answer.

[Janshep in reply to CaroleF]

Thank you x

[jeanjeannie50]

Hi Jan and welcome to our forum.

Bob and Carole have given you some good tips.

On the top right hand side of this page is a box saying Search AF Association, if you type anything you want to know about in here it will show you all the old posts where it will have been discussed.

However, we are all here and eager to help and advise you in any way we can, so fire away with any questions and remember there is no such thing as a daft question.

Jean

[Janshep in reply to jeanjeannie50]

Thanks very much Jean it's great to have people that know what they are talking about My dr doesn't seem to know much about it and all he keeps saying is "if you have an attack dial 999" last time I went to hospital I laid in a corridor with someone painting over my head ! Not something to look forward to when your feeling unwell x

[jeanjeannie50 in reply to Janshep]

I know what you mean! I used to go to hospital A+E but now wouldn't unless my pulse had been over 130 for many hours.

[Rebma in reply to jeanjeannie50]

I had abliation 5 weeks ago in us. Next day in hospital they cardioverted me. Went. Ack on my own but sent me home on amiodrone. It is a killer. I see electrophysist tomorrow and have to stop that drug. All others didn’t work. He want sure if abliation worked. Very depressed.

[jeanjeannie50 in reply to Rebma]

Have you tried Flecainide tablets? A lot of us on here take them and for me they've been the only pill to really help calm my AF. When I first started taking them I imagined all sorts of side effects, but my body soon adapted and they disappeared.

Jean

[Rebma in reply to jeanjeannie50]

Yes. I could not take that. Also multag failed. I feel so lousy on these heart arthmita drugs. Can’t take them. I don’t know if abliation worked. Don’t this ep knows. Hope to get answers tomorrow.

[Rellim296]

Something wrong with your heart sounds very bad and being given quite significant medication doesn't add to one's feeling of wellbeing either. And yes, that stroke is right in front of you, next week or sooner. It isn't easy at the start of the AF journey, but firstly, although it can be accompanied by other heart problems, AF is a condition not an illness and a problem mainly with the heart's electrics. It affects us all differently. As time goes by and we live with AF without mishap, we adjust and feel less threatened. It doesn't feel half as dire as it seemed at first. There are ways forward. Many of us do quite well and some really get the upper hand. And it can be a great incentive to living in a healthy way!

[Janshep in reply to Rellim296]

Thank you

[jedimasterlincoln]

I remember how I felt after my first initial onset, particularly as I was only in my early 30s. Plenty of people have been through a lot on here and happy to help you out any way we can.

[Janshep in reply to jedimasterlincoln]

Thinking back to things that have happened in the past ,not being able to run for a train , dancing etc I'm sure iv had AF for a long time and almost wish it hadn't been diagnosed lol x

[Hidden]

As the good folk here have said, we have all been in your position and it takes time to come to terms with the unwelcome fact that you have something wrong with your ticker. Some interesting points which may help, as fear and associated stress are far from helpful, but are normal reactions when first diagnosed. It's very important to remember that AF effects different people in different ways and very definately, there is no "one size fits all" route to coming to terms and controlling your condition, this is why Bob's point of research is so important. Always try to bear in mind that there are around 1 million folk with AF in the UK, and only 7500 follow this forum which may be an indicator that the majority of sufferers out there, may be able to get on with their lives, but a lot depends on how AF effects you . Unfortunately, lack of knowledge naturally creates fear, and when I was climbing the walls just after diagnosis, I will never forget the time my GP said to me, what is you are so worried about, your heart isn't going to stop beating.....his face was a picture when I replied, "well you may know that, but nobody has told me!"

When I was diagnosed, I didn't know I had a problem, yet within less than a week, I was convinced the end was nigh and like you, I was feeling dreadful, but in truth, my condition hadn't changed so mind and attitude play a big part too. The key problem, as you have identified, is the risk of stroke, and it's good that you are taking an anticoagulant which will significantly reduce that risk.

The next important thing, once your knowledge has improved, is to establish a treatment plan with your specialist which will depend on a number of different factors specific to your condition. An EP (Electrophysiologist who is a cardiologist specialising in arrythmia) is a good route to take.....but read as much as you can, see if there are any AF support groups within striking distance and ask questions in the forum....it aint gonna be easy, but that's how many of us have found ways to move forward........best wishes, John

[Janshep in reply to Hidden]

Thanks so much John I'm feeling better already It helps just finding out what all the different terms mean and I will certainly look out for a local group if I can find the breath to walk there lol x

[Walker1234 in reply to Hidden]

Hi

I was only diagnosed November..

I read everything I could and it put my mind at ease I was put on Bisoplorol but made me worse some people are ok on it

I think at night when you are first diagnosed is worse you think all sorts...well I did..but now sleep ok I'm sure you will be fine really good reading on here good luck

[Janshep in reply to Walker1234]

Thanks it's very reassuring x

[lacolyn in reply to Janshep]

I was actually evacuated by helicopter with my AF. You're and amateur! Still, 3 weeks post ablation and the effects of the operation have mainly subsided so now I just recover and get back to a normal life... and hope that's the last of it. Yes it was frightening and I sought lots if advice! But you soon decide it's not terminal and life can go on if you don't take it so seriously. In proportion, and one step at a time. Adjust. Look on the bright side. Be positive. Zen.

[dedeottie]

Welcome to the forum with the best and most friendly bunch of people you could ever hope to meet. You have already been given excellent support and advice so I would like to agree with everything said and emphasis that eventually you WILL feel better both physically and probably more importantly,mentally. When you have seen a specialist ,preferably an electrophysiologist, you should be offered a care pathway that will help the physical symptoms and hopefully we will help with the mental anquish. I was a shivering wreck until the good folk on here helped me out with just he right balance of good common sense, straight talking when necessary and tea and sympathy. I am now the nearest thing to an expert about A.F. than I have ever been about anything in my whole life! Infact today I accompanied my husband to his second E.P. appointment as he has recenly also developed A.F. After my informed questioning the poor registrar said "you must have been in medicine yourelf Mrs Woods " (I donk think he was being sarcastic!) So I told him I was merely a member of A.F. association. He then spent ages explaining things to my husband in great detail and he had a 30 minute appointment as opposed to the usual 10.

Anyway I wasnt going to ramble but of course I have. I hope your hospital consultations go well. X

[Janshep in reply to dedeottie]

Thank you it's lovely to have so many new friends that can help and advise me x

[Pam296]

Hi, and welcome to the forum that has helped me so much. I was only officially diagnosed in March but had probably had AF for about a year. Like you, the signs were there. Sudden fatigue in the gym, palpitations, etc. When the cardiologist told me the results of my tests, it was a shock but he immediately told me I wasn't going to have a cardiac arrest! You hear the words 'heart condition and immediately fear the worst. I've found that cutting down on coffee has helped to reduce the episodes. My cardiologist told me not to underestimate the impact that lifestyle changes can have on AF, especially losing weight. And one of the best pieces of advice I was given by the lovely people on this forum was to see an electrophysiologist rather than a cardiologist if you can.

Good luck with everything.

[Janshep in reply to Pam296]

Thanks Pam Iv already worked out that coffee makes me worse but really wish I could lose weight 😒Iv always been big and struggle to lose weight but with this complaint and not even being able to walk to the shop without hanging onto my husbands arm it's getting worse and I am honestly trying hard (As I can hear everyone saying stop eating lol) I never drink alchohol and don't smoke but need to drink water and squash constantly and visit the loo 578964 times a day (well that's what it feels like 😊) Have a good day everyone xx

[Buffafly in reply to Janshep]

No squash! Full of bad stuff! If you can't bear plain water drink very diluted fruit juice or better still rehydrating drink as your salts are probably unbalanced. I haven't read all the replies but I am sure someone will have mentioned balancing potassium and magnesium.

I am sorry you have AF but although it won't be much comfort to you it is a much better time to be diagnosed than even ten years ago because there is so much more help of all kinds available now.

Best wishes, hope you have a good consultation with your specialist.

[Janshep in reply to Buffafly]

Thank you I am learning so much on here xx

[Pam296 in reply to Janshep]

Losing weight is so hard! Over the last 2 years, I have lost 3 1/2 stone but I can't shift the last one. And I still managed to get AF! 😕

[Janshep in reply to Pam296]

Makes you wonder doesn't it ! At the moment I can't do anything without getting out of breath even getting into bed ! So it going to be very very hard to lose but I am trying xx

[Tracyhithere]

What was most helpful to manage the onset of acute anxiety that accompanied AF for me, was mindfulness/meditation/relaxation. Headphones and YouTube sessions changed my life and I don't think I would have returned to work in those early months without it. Best wishes

[Janshep in reply to Tracyhithere]

Thank you I am happy to try everything xx

[Tazzydee]

Hi Jan,

I'm the same age as you and was diagnosed late November last year when I went into A&E because I thought I had a rather bad case of wind! I was whisked up to the cardiac care unit pretty quickly and was put on the what I now know as the std treatment of bisoprolol, ramapril, warfarin and water tablets. Being assigned to a heart failure nurse was really scarey!

I was bookedin for a cardioversion which failed and I was so disappointed as I had built myself up to this being the end of all my problems. After that I had three weeks of hell going through an introduction to Amiodarone but it was well worth the perseverance as it began to regulate my HR for the first time in months.

An Angiogram later, thankfully, heart disease discounted I am due to have another cardioversion this Friday.

All this from being a perfectly healthy person to relying on regular medication has been a massive shock. I have found counselling very helpful to making the adjustment and I have just had the courage to go back to the gym and yoga classes.

I take high dose Magnesium Taurate supplements three times a day and I also take vitamin and menopause supplements daily and since taking them my rhythm has improved too.

I try to avoid all stimulants and have had decaf tea and coffee for years anyway and now I have to have a low salt diet too. I tend to sleep propped up a little and like others avoid laying on my left side. There are lots of meditation videos online and free apps you can use as well to help teach you to relax.

Things will get better for you it will just take a little time. Be clear on your treatment plan and don't let the doctors talk at you. I'm lucky in that I have an Arrhythmia nurse as well and I find them much easier to talk to and can phone them directly when I need to.

Good luck and if you need to talk/ chat you can message me here.

Good luck and your not alone x

Tanya

[Janshep in reply to Tazzydee]

Thanks for the encouragement Tanya and I hope it goes well for you on Friday xx

[Tazzydee in reply to Janshep]

Thanks. I'm beginning to think I may come out looking like Frankenstein's bride!

[Janshep in reply to Tazzydee]

I'm sure you will be fine lol xxx

[Hilaryjm]

@Janshep It could have been me last summer writing your post! Don't panic about a stroke now you are on Xarelto. I have found mindfulness practice very beneficial especially in helping to stabilise BP during episodes, and keeping it low at other times. I am fairly sure that part of my PAF is down to low magnesium (blood levels aren't a reliable measure). Do look at the videos on YouTube posted by cardiologist Sanjay Gupta. Very easy to understand without being at all patronising. If you have the means, you should supplement with Omega 3 (in fish oils). And get your thyroid checked: high or low thyroid levels can lead to AF depending on likely causation. My triggers: lying on left side, more than a couple glasses wine, drinking cold water. But whatever, episodes still happen apparently randomly at any time in evening or at night, especially when relaxed. All to do with the vagus nerve apparently. Episodes can be really tiring even when they are not very strong or even barely noticeable. You are not being feeble if you just want to have a lie down! Just do it! And give up wheat and gluten if you haven't already done so.

[Janshep in reply to Hilaryjm]

Thank you very much for all this advise I am much happier since reading all the kind messages everyone puts on here . My dr really doesn't seem to know much about it and just tells me if I have an episode to dial 999 They would be really happy if I did every time and when I see my consultant I will have a much better idea of what to ask xx

[Hidden in reply to Hilaryjm]

What is this about wheat and gluten?- I have always thought they were only to be avoided if you are a caeliac? My Tai Chi teacher adviced sleeping on my right side too so I'll make a point of adopting that. Perhaps that has been my trouble as I have usually slept on the left side! I have hardly had normal tea or coffee for years prefering herbal teas and gave up the small glass of wine that I usually had with a meal after diagnosis, seven months ago. Only occasionally get episodes and heart beat never very fast when I do so I find the medication the worst thing to deal with! Taking the apixaban at a slightly rduced rate and very occasionally a 1.25mg bisoprolal when I have an episode (and have it with me!) and my heart rate isn't low already as it has been on occasions. We are all very different but everyone on the site seems great!

[Hilaryjm]

Janshep the problem with cereals like wheat etc is that they are pro inflammatory. AF is associated with inflammation in the system, so many people find that removing them from the diet completely helps with the AF. Also whole grains can get in the way of absorbing minerals which you need for your cells to function properly. You may find (as I have) that following a paleo diet is helpful. I was advised to do this by a nutritionist whom I consulted as I had a succession of things go wrong which were to do with inflammation and/or autoimmune diseases. I am now much improved, tho I still have some PAF.