Another newbie

[Chris1945]

Hi, I'm new to this website but thank goodness I've found it because it's so good to know I'm not alone, there are others out there with the same condition and concerns and it's such a comfort to read the positive comments because I've been pretty depressed with it all. It seems to have taken over my life, I won't do this or that, won't fly, eat after a certain time and other stuff...

I was diagnosed with PAF back in 2014, always happened during the night after pigging out during the evening, but the last two bouts were during the day after eating gluten packed food and drinking non-decaffeinated coffee. Most cardiologists would disagree with this but I think a gastroenterologist might be more sympathetic, has anyone gone down this route? Having said that I had an appointment last week with an EP guy who is terrific and he agreed with me that sometimes there is a link....I think I love him!

I also have the little Kardia gadget/app which is great, takes an ECG and then emails you saying it's normal or conversely, that there's possible afib. I was delighted to see the aforementioned EP guy had one in his possession and he agrees it's worth having. I can email him my ECG results but above all, when it says 'normal' I feel somewhat reassured!

So, I repeat, very glad to have found this link and I wish everyone well....x

[BobD Volunteer]

Well done and glad to hear that you seem to be in good hands.

AF is a long journey and finding the right life balance is always difficult in the early days with anxiety well to the fore.

It is important to remember that AF won't kill you and try to live your life despite it rather than because of it so I hope you regain some freedom. Yes avoid alcohol and caffeine and maybe a change of diet to a more plant based one with less processed foods but that helps with lots of things not just AF. A good weight is also helpful (BMI less than 25) according to recent findings.

The link with digestion via the vagus nerve is well known in our circles so you are not wrong. If you type vagus nerve into the search box you find loads of posts about it.

We are here to support and help so do ask anything you want about AF

[Chris1945 in reply to BobD]

Hi BobD, thanks so much for your response, I will certainly check out the vagus nerve scenario - sounds like a must, I have drastically changed what and when I eat and I'm a veggie (and I have lost weight) but of course, have to keep an eye on all the lovely green veggies which can play havoc with the Warfarin! Good to know afib doesn't kill me but tbh, my main concern is the other ghastly scenario of a stroke which for me, is a thousand times worse and I think that's what causes my anxiety more than anything else....however, I guess it's just something I have to learn to live with.

A question re ablation, If it works, does it mean one can come off warfarin?

[BobD Volunteer in reply to Chris1945]

Frankly I wouldn't but that is me. I've been AF free for nine plus years but would never consider stopping anticoag (warfarin) unless there were serious other issues.

There is a school of thought that even successful ablation does not remove the stroke risk. In fact one leading EP has said it isn't the AF which brings the risk but the company it keeps. If your CHADSVASC score was zero before AF then it may be possible to stop but for me the fear of stroke is worse than death so since I have pretty much zero problems with warfarin I see no reason to stop.

Of course one can never be sure of anything and having kicked AF into touch I then found I had cancer (prostate) so spent four years getting rid of that. Currently taking bets on what else will try (and fail) to kill me. (probably my wife if I don't get off this computer. )

[Chris1945 in reply to BobD]

I completely agree with you Bob on a stroke being worse than death so I wouldn't be too concerned about staying on Wafarin either if it helps in any way, and despite being veggie, my INR levels seem to be stable at 2.5. I'll just have to learn to cope with the time zone changes when travelling and yes indeed, it will be tricky, but hey so is life, something will always get us in the end...just make sure you don't overuse the computer!!

I do hope you've made a good recovery from cancer, all the very best.

[BobD Volunteer in reply to Chris1945]

Yes thanks PSA undetectable in all six monthly blood tests.

[GrannyE in reply to BobD]

What is a CHADSVASC score

[Chris1945 in reply to GrannyE]

It's what doctors use to estimate a stroke risk.....I'm not absolutely certain, but I think I it's a score of 2, certainly 3 or over that makes one more likely.

Atrial Fibrillation CHA2DS2-VASc Score for Stroke Risk

Select Criteria:

Clinical Features

Congestive heart failure / LV dysfunction (1 point)

Hypertension (1 point)

Diabetes Mellitus (1 point)

History of stroke, TIA or thromboembolism (2 points)

Vascular disese (history of MI, PVD or aortic atherosclerosis) (1 point)

Age

65-74 years old (1 point)

>= 75 years old (2 points)

Sex

Male (0 points)

Female (1 point)

Results:

Total Criteria Point Count:

Notes References

[GrannyE in reply to BobD]

I too am very pleased to see how other people have coped with the aftermath of an ablation for AFib and what symptoms other people have had and to know that I am not alone. My ablation took 4 hours. I had excellent care in the Royal Brompton but was discharged too soon and was in A&E that night but they had not got a clue what to do with me. I had severe trembling and difficulty breathing and my bp went through the roof. Was discharged the next morning but had to go back to the Royal Brompton 3 days later. They are extremely good and caring there. Unfortunately I had a stone of liquid in my abdomen and lungs from the ablation and oozing from the site of the entry point, which turned septic, plus pain of the oesophagus. All much better now but acquired a pain in the shoulder blade which meant I could only sleep on my front slightly raised. Not comfortable. Am hoping that the A/Fib will go now that the antibiotics are working, and the oesophagus has calmed down. Apparently it takes 2 months to see if it has worked. Am worried in case it has not because don’t fancy going through all this again. Still I will cross that bridge when I come to it. Am on Apixaban not warfarin which I am not sure is the right thing for a veggie - too much vit K I would think. Have cut out sugar, gluten and cereals except for gluten free oats - it cannot do any harm and might help. Also cut out dairy except for goats milk, yogurt and cheese.

[BobD Volunteer in reply to GrannyE]

Sorry to read that GrannyE I had all three of mine in Paul Wood ward at RBHT and no trouble at all.

[GrannyE in reply to BobD]

Why did you have to have 3 and in what timescale

[BobD Volunteer in reply to GrannyE]

Over about three years because the first one made me worse, the second worked for about nine months and the third in 2008 finally sorted out the AF. I still get occasional other arrhythmias but who doesn't?

[Hidden]

Reading your first paragraph, I think you should read what was said in response to gemsmum 's recent posts about going to Portugal.

If you put Portugal in the Search AF Association box and filter out all but AF Association posts, you should find them. There are two - the first is Help - gone into AF at 4am and the second Arrived in Portugal.

(Or you can click on gemsmum above)

[Chris1945 in reply to Hidden]

Hi Relim2, I haven't checked out the link you suggested yet, my flight though would be of greater duration than Portugal, I have family in North America so longer flights and a couple of time zones involved, not sure how to deal with taking Warfarin in such a scenario! Thanks for responding ......

[Hidden in reply to Chris1945]

People do go for long flights successfully. The warfarin timing is tricky!

But the link I mentioned was really in relation to feeling that AF has taken over one's life.

[Oldcarol]

You are not alone. You sound exactly like me. It does make u depressed when u are going along so good and suddenly this alien flopping around in your chest wants all the attention. IT WILL GET BETTER. U are seeking help, and mainly learning about something u probably never knew about before. Bob is right, it won’t kill u, making lifestyle changes in diet is important and NOACS depending on your age and doctor recommendation. As a newbie, don’t hesitate to ask questions. We r not doctors, but have a vast amount of experience!! And it’s not all bad!!!take care. I thank God everyday for His help and the medicine world.

[secondtry]

Hi Chris, you are on a well trodden path and it can get a lot better.

It does mean a steep learning curve and in my opinion the right attitude is to have an open mind on all related information and changing your lifestyle to suit. Three years ago, I had nine episodes in a month, felt dreadful, 2 cardios and an EP offered me an ablation but I stabilised on an old tried and tested drug Flecainide, have avoided all my triggers and have been AF free since. Good luck and persevere its worth it.

[Chris1945 in reply to secondtry]

9 episodes in a month...wow, that's a lot, thank goodness I don't have that. I only take Flecainide if I feel an attack has come on...100mg x 3 tablets at the one time. Last time, two weeks ago, the pills didn't help and I ended up in A and E where they said I was in a-flutter as opposed to afib, not sure what the difference is, can anyone else help? They didn't give me medication they just waited and watched and after another 2 hours or so I went back into normals sinus rhythm.

I will do my best to persevere, no other option really! Take care....

[Fastbeat]

Hi Chris and welcome to our forum.Much help and peace of mind can be found on here,as with a lot of things attitude is a great help.We still have good lives to lead, don't let AF spoil it, learn to live with it and your QOL will be so much better.

[Chris1945 in reply to Fastbeat]

Yes, it is a great website, nobody I know had ever heard of atrial fibrillation so I felt kind of 'all alone out there' but knowing this is available to me and to others, is just a great feeling. Most of the time I'm fine, it's just taking a while to come to terms with it all but this forum is doing that already.....

[RichMert]

A heavy meal will increase your blood pressure for at least 2 hours during the digestion period. I found that you could never pin an episode down to one factor and gave up looking for a trigger. I have since been playing with a blood pressure monitor however, I am not sure whether an increase in BP could be a trigger for PAF but, it would relate the heavy meal theory.

[Chris1945 in reply to RichMert]

Well that might explain things because as far as I'm concerned there's a definite link between what I eat and drink connected to afib episodes. I have to stay away from my favourite blue cheeses, gluten products, caffeine and various other favourites. I eat my main meal of the day at lunchtime and just have a light snack in the evening and so far, touch wood, it seems to help so might as well carry on doing it and the good news is, I've lost 2 stones so it's not all bad!

[secondtry in reply to Chris1945]

One of my triggers is cold carbonated drinks, half a bottle of Ginger Beer set me off.

[12cupcakes]

Welcome. I too am fairly new to this link but it has been awesome. Great support, advice, and knowledge here. This link has helped me so much.