Newly diagnosed Afib

[Jeep2021]

Newly diagnosed this weekend in the ER. Paroxysmal Afib. Meds put me back in NSR after 10 hours. Now on Diltiazem and Eloquis plus flecainide if it breaks through. Wearing a holter monitor for 14 days. Does anyone have positive stories of still having an active and good life? I’m just so tired and anxious right now. Afraid to venture out or do anything.

[mav7]

Does anyone have positive stories of still having an active and good life

Too many to tell ! 😊

You will be fine. The holter monitor will provide valuable info for your treatment.

Check the below link if you have not seen.

healthunlocked.com/programs...

[Chinkoflight]

Hi, I think it would be unusual after such a diagnosis not to worry when an event comes out of the blue. A paroxysmal diagnosis leaves you hanging in the air without an explanation of how it started , when will it happen again, can you do anything to stop it, have you done something to cause it or make it worse. Etc etc.I had a paroxysmal severe stroke. Rapid treatment and thrombolysing enable me to walk out if hospital. Heart checks etc to see if a cause, including scans, Holter ECG, etc. No explanation or obvious cause. General health was good other than overweight. No follow up treatment other than antiplatelet meds for stroke.

But there was a new approach to reducing stroke incidents in the UK using LINQ ECG implant devices to monitor the heart 24/7/365 using AI to analyse the data and send cardio reports to the consultant. After 3 months Afib was picked up. I was unaware of the event!

Afib per se is not unusual and in itself is not a problem. But it is associated with increase in stroke risks. So my medication was changed immediately from antiplatelet to anticoagulant, EDOXABAN. In the UK this new approach is set to reduce deaths from stroke by 6500.

Being on this medication is a great relief as I know it's significantly reducing my future health risks from stroke.

I had all the anxiety as did my family too, from all the questions in the first para above for about two months. My son's pointed me in the direction of exercise trackers, Strava, that can be shared with my wife so she knew where I was.

This meant I could get out and take exercise more seriously as it was something positive I could do to improve my cardiovascular health to the best it could be. My GP cleared it as okay. I'm 71 never run in my life but I took it up instead of cycling. If I fall over it's not so far to fall and I run slowly unlike cycling!

Now I run Parkrun most weeks and have entered 10k runs and love it. It's given me a new sense of freedom. I no longer use the tracker as everyone's anxiety has diminished. But I still use Strava and follow my health improvement on my smart watch. This feedback is hugely motivational. I follow my own training plan, the mantra is to always run at a conversational pace, no pain, no pain being the absolute guide. No heroics or machismo.

This may not be for you but do consider how you can help improve your own cardiovascular health. It may be strength and conditioning or pilates, whatever.

Being on the meds is a good thing, even if you have some side effects. I had some effects early on but I don't notice them now. I am fitter now than when I was thirty, my fitness age is lower than my chronological age and still falling!

Good luck, don't dwell on the negatives. Your future health risks are better now for treatment than no treatment.

[Globe-J]

Hi,

Understandably, you are concerned. Having suffered the same affliction, let me offer my story.

It is now several years, since I returned to 'normal' life. I opted for the Maze Procedure. Luckily for me, the result has been successful. No more medication, steady pulse, back to running.

My suggestion, please consult a cardiac surgeon, familiar with the procedure. Do not take a 'no' for an answer, you need to connect with the right medico. I had to overcome negativity too.

A caveat - apparently even this procedure may be ineffective, in a very small number of cases

Best wishes

J (-:

[Rainfern]

Hi Jeep, welcome to the forum. I was diagnosed a year ago with AF that quickly went from paroxysmal to persistent AF. Some people with persistent barely notice it, but I’m quite symptomatic and went through all the same anxieties you describe. Medications have helped and I’m due to have a catheter ablation this week.

I’m also just back from a great holiday in Scotland, managed a few good walks, enjoyed good food and galleries and special time with friends. Until recently walking uphill made me uncomfortable and breathless, but a recent change in meds has really helped.

Getting an AF diagnosis is a huge shock, but I can assure you with a good EP and the support of this forum you come out the other side. It takes a bit of adapting - getting my head around alcohol free wine comes to mind. Splashing out on a half hour consultation with a private EP cardiologist (I’m in UK) helped me to see a way forward and find the right meds and treatment. My GP was just going to “manage” the condition without even referring me through cardiology - a victim of an “age related” condition. So if you’re a bit of a fighter do use it to find what you need, get second opinions etc.

Best advice I had on this forum was to get on with life which I initially struggled with because I was in such a state of dismal shock. But now it’s my mantra. And hearing people’s stories and advice has given me a lot of hope. My ablation on Friday has a 50% chance of success for persistent AF. Higher if I’d PAF. So I’m keeping the glass half full and making sure to get out walking at least half hour a day as advised, eating healthy food, keeping weight down, aiming for 7 hrs sleep a night, box breathing, relaxing, doing the things that give me joy.

[CDreamer]

Hi and welcome. Diagnosis is a shock, it takes time to adjust, it takes time to absorb what this may mean for you. Will life ever go back to what you knew? Probably not as AF is life changing but not in a bad way.

1. It’s not life threatening

2. It should not stop you doing most activities - ok maybe you need to cut back on the sky diving and scuba diving and a few more of the adrenaline inducing sports but millions and millions of people travel, exercise, go shopping, have parties and do all the normal things of living.

3. Some treatments will help but some will not. Some people find their silver bullet and have no more AF, others just live with it. There is one word that describes AF - unpredictable - and it is that which you are scared of. Learn to live with unpredictability. So what if you have AF when you are out and about - I’ve had AF in small yachts in the middle of the ocean, on trains and planes, in small boats whilst whale watching and sometimes I had to go to bed to rest and recuperate but I always got back up again the next day or week and got back out there.

4. Learn as much about AF as you and the AFA - Atrial fibrillation Association have excellent resources and programmes where you can learn about the latest thinking.

this is the US version of the site heartrhythmalliance.org/afa...

which is very specific to AF rather than the BHF site link above. Other websites such as STOPAF are also available. Whichever - know your subject before you discuss treatment plans with a specialist cardiologist sometimes known as an Electrophysiologist. Know that there are some differences between treatment plans and options in UK and US/

5. Learn to manage your anxiety as it will exacerbate your AF symptoms. We have a phrase here in UK which came from WWII - Keep calm and carry on which sort sums up exactly how to cope with AF. If you feel secure in yourself you will cope with the unpredictability of AF.

Just a few comments about suggestions above - Mini maze procedures are normally performed when AF becomes persistent - more common in the Us for particular types of AF such as the Wolf Maze procedure but very few surgeons have the training, skill and experience as yet.

I was diagnosed in 2007, couldn’t tolerate any of the meds and felt much, much better as soon as I stopped taking them as I felt worse on the meds and could cope with AF. Had 2 ablations which gave me 3 years free and then episodes returned. Had pacemaker implanted in 2018 and now hardly ever have episodes unless I have an infection and even then it no longer disables physical activity.

It is not nearly as devastating a diagnosis as you think - unless you allow it to be.

Go well and know you will find help and support on this forum. Best wishes CD

[frazeej in reply to CDreamer]

Well put!

JimF

[intheweeds]

Same thing happened to me a year ago…exactly the same in fact, including the 10 hours in hospital to bring me back out of AF. I have PAF and do lots of exercise, eat healthy as possible etc.

After a year of diagnostics such as blood tests and ecgs, I went private because I still hadn’t seen a GP or a cardiologist on NHS. Now I am booked in for ablation which is making me anxious, but hopeful in case it works. As others have said, there are ways of managing this condition and this forum is packed with lovely people and great helpful ideas.

AF is not the end of the road, just another path on which there is still plenty to see and do.

[KiwiBlake]

Hi Jeep2021

The only thing I would add to all this excellent advice, one thing that has been helpful for me is to keep a diary of events leading up to an AF episode. I find it useful to track things like, time of day it starts, what I have eaten in the hours leading up (and what was in the food, specific food ingredients, preservatives, sugar etc), what I had to drink e.g. coffee, alcohol, soft drinks. Also note anything that is stressful, could be a hectic day at work, an argument or disagreement, family matters, etc. I can then start narrowing down things that set me off so that I can make lifestyle changes, learn the danger signs, and avoid eating and drinking certain things, and minimising stress.

In time you will become very in tune with your body and be able to better manage your way through it.

All the best

Blake (from New Zealand)

[JOY2THEWORLD49]

Hi

It's imperative that you exert your heart sometimes. Instruction from my H/Specialist.

It takes time to get controlled whilst meds are sorted out.

Anxiety is the worst position to be in and makes AF worse or appear.

Cheers JOY. 74. (NZ)

[lizzieloo2]

Hi. I was diagnosed with paroxysmal AF about 10 years ago. I was very panicked and worried about everything. I just wanted to cry all the time and have the GP hold my hand. After I was put on Diltiazem, warfarin and eventually Flecainide as a PIP, I realised that the episodes were not that frequent - every 9 months to a year. Yes, the episodes were awful at the time because I panicked myself but gradually I realised that things were alright, I wasn't going to die. I could go on holiday (admittedly in the UK) and nothing bad would happen. I then relaxed more when I had an episode and could even try to sleep through some episodes. I held off taking the Flecainide for years as I was worried about taking it but eventually I did take it and again, nothing bad happened and it did stop the episode. About 2 years ago, my AF became more frequent (about once a week) and I opted to go on the waiting list for an ablation as I knew the condition was progressive and would only get worse. I had the ablation 7 weeks ago, feel fine now (although I did have an AF episode the day after the ablation and I do tire easily) and am so far pleased I had it. My EP wanted me off Flecainide altogether so I'm happy not to take it. So far so good. The point is that with time you will come to accept it as the new norm and realise that you can deal with it without it ruling your life. Good luck

[frazeej]

The first couple of weeks after diagnosis are the most difficult, anxiety wise! You're on proper medication, you're not going to die. After a while you'll feel more relaxed, and less panic stricken. Believe me.

JimF

[Jeep2021 in reply to frazeej]

I sure hope so! Thank you!

[FraserB]

Almost a year ago, I had a similar experience in hospital as you did and I'm taking the same medications. Diagnosed with paroxysmal afib. For a month after the first episode I was living in fear when it would happen again. Even had my bag ready by the door to take to emerg "just in case". But after 2 months the meds started kicking in. After this came all the required heart tests which also took many months. The more I learned about the condition and the information from the medical tests as well as working on my overall health the more I could stay focused on other important areas of life. Get educated on the condition and know your medical options. Always understand everyone presents somewhat the same, but also we are mixed with vast differences. It's almost normal for you to feel "wired" right now. But it will get better.