I'm really glad to have found this community! I've just joined (yes at 1:30 in the morning... Can you tell I've been having some weird heart feelings?)
I'm going to paste my 'story' at the bottom of this. I have so many questions and it's hard to get answers from medical professionals/perhaps I don't always under them, to be honest it's hard to get to talk to them at the moment!
My main question is always 'when to worry'. I'm fairly new to AF and I'm on new meds for it. When I do get episodes (I don't even know how to describe them because sometimes they are different, but basically I can just tell my heart isn't doing it's normal healthy thing) I don't know if it's natural and I have to just be I feel it out.. When is the point I should see a GP or go to A&E (a real trek; the closest is an hour and a half away... Love you Wales)?
I guess this is impossible to answer but I'm guessing people here will at least understand my feelings.
Generally I'm worried and confused. I'm trying not to get obsessed with the whole thing but I fear it's a bit late haha! Sometimes I feel fine and other times I just feel. So doomed by the whole thing. I'm only 32 and my heart sinks when I see my box full of pills.
A random question that I don't even know is related to AF... Often when I have a big yaw I feel my heart do something like a flutter.
Thank you so much for the late night reading! And thanks for anyone who read this whole thing!
My story:
I was diagnosed with paroxysmal atrial fibrillation last year. I was in AF through the night (though I didn't know what it was at the time) went to A&E in the morning expecting to be told it was nothing, I was there until the evening when I went out of AF with a prescription for abixaban.
I had felt random heart palpitations over the years and had a few ECGs but they had always been fine until they weren't!
My apixaban dosage was reduced when I became anemic, I later learned that I wasn't on a high enough dose to be anticoagulanted... Oops!
About 6 weeks ago (August 2020) I woke up with a pounding heart that settled a bit but not totally, went to A&E early in the morning. Was there over night. My HR was all over the place the whole time I was there but they didn't do a CV because of the lack of blood thinders. Left with betablocker prescriptions the next day. Going for an 8 week follow up soon (on the phone... Yay!)
I was lucky in that whilst in the hospital in the hardcore AF I felt totally fine. I felt the beats of course but no dizziness or tiredness, just rather bored being stuck in the bed!
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Medi32
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Hi Medi and welcome. I think most of us on this forum will relate to your feelings of anxiety and confusion and have a million questions - which is why this forum can be SO useful and supportive. My own experience is that things settled anxiety wise when I did have more knowledge and I did understand which is what the AA (Arrythmia Alliance) aims to do - support and inform
Information - may I suggest several things - the AFA (Atrial Fibrillaiton Association who are part of the AA) have loads of information to download covering most scenarios - this takes you to the home page heartrhythmalliance.org/afa...
Scroll down and click on Patients and you will find lots of info and links.
You will also see Virtual Patient Day with a fantastic agenda of talks by leading experts on a whole range of issues which arise with AF - it only just opened and you have 12 months to watch so you need not rush!
Information is potential power and when you have a clearer picture of your condition you are better able to direct informed questions to your doctors and hey presto - you get a much clearer picture of your individual situation.
Lots of help and support here so don’t hesitate to ask any questions. You will also pick up a lot from reading threads and I would recommend going over to YouTube and subscribing to York Cardiology - Dr Gupta who is a cardiologist has a series of videos with lots of information on what, how, when and where things go wrong with the rhythm of our hearts.
PS - not the longest post I have read to the end - I have been guilty of much longer one as sometimes just the writing of helps I find.
Thank you so much for these tips and your reassuring words. I slept a lot better after reading some posts last night. I had avoided doing any internet research for fear of obsessing but I can see this is going to help me a lot.
I agree that internet searches are bad for your health but anything from AFA (and most of the posts here ) are vetted and approved by top medical advisors in teh field so are good information.(Most of the members , however, are not medically trained so must not advise on drugs or other treatment)
I can't add much to what CDreamer has already said other than to answer one question. AF is a chronic condition and not an accident or emergency so should be treated by your normal medical team i.e. GP and cardiologist . The only exception is if you have any chest pain, or fainting which MUST be investigated as soon as possible where a trip to hospital is advisable.
Hi, your ‘history’ was very good, sometimes people ask questions without much info which makes it hard to be helpful.
Keep up the ‘no googling’, it will save you a lot of anxiety and confusion. I can also recommend the British Heart Foundation website which has excellent downloadable leaflets.
I have to say you have been lucky so far despite the AF - some people go most of their lives with a GP diagnosis of panic attacks or ‘female problems’😬, your symptoms are mild and you’ve found us 😀. It would have been so great to have access to a forum like this when I was diagnosed.
In answer to your A&E question, one of our favourites, now you have been diagnosed and checked over you don’t need to go unless you have chest/neck pain, faintness or extreme breathlessness or symptoms of a stroke in which case call 999, don’t drive yourself.
Yes I feel very lucky that I was listened to and also that I can feel it so was able to be diagnosed, as I've heard that some people can't.
Reading these responses has made me very emotional in school lovely way. I feel like over the last few weeks so part of my brain has been ALWAYS thinking about it but I haven't wanted to share too much with my family as I don't want to worry them ( they mainly worry about me worrying... What s vicious circle!) It's so nice to get some reassurance from people with similar experiences.
The info about not needing to go to A&E is very helpful. It doesn't help that my AF symptoms often seem to come at night and that's when everything seems scarier!
Mine often started at night - 2 things you may want to consider Sleep Apnea can cause night AF as can sleep position in some people. Treating sleep apnea can help mitigate AF & when you sleep better & straight through you start to feel better.
There is a lot of lifestyle choices we can make such as ensuring good sleep, good nutrition, managing stress & moderate exercising & I have added - breathing which is how we can help ourselves to also look at. But one step at a time & hopefully, knowing you now have somewhere to go where people will understand will help.
See recent post on Nasal Breathing a few days ago.
Oh this is interesting. I was meant to have a sleep apnea text in April in Spain (where I live most of the year) obviously it was cancelled because of covid and has been rescheduled for November. The issue is now I am in the UK basically because I had this AF episode and have been referred to an EP and while I want to head back to Spain I think staying with the referrals I have here is so good idea for now (and sheltering in Wales with my family feels safer in Covid times I must say!) but maybe I should see if I can get a sleep apnea test here.
I've checked out that nasal breath in post and will be listening to the podcast! I used to have good breathing techniques thanks to theatre work but it's been a long time!
Morning and welcome! Yes it really is a weird condition and different for everyone it seems. I was diagnosed 4 years ago at age 47. We are young to have this but I promise you will get more relaxed with it as time goes on. After numerous trips being blue lighted to A&E, stays in hospital, zillions of tests and lots of medication changes mine seems to be under control . I am on warfarin sotalol and rampril.
I can feel when my heart is irregular but I try not to worry and take my mind off it. I only get concerned these days if beats way over 100bpm and then it’s usually a trip to A & E. I had a horrible reaction to Flecainide which ended up with me having an emergency cardio version and a 2 week stay in hospital. Heart went up to over 250bpm and it was a major emergency. Don’t be gobbled off by cardiologists and make sure you ask questions. I found that some almost made me feel like a nuisance and were quite unconcerned about my condition. One thing I would say is try and keep a note of when it goes crazy. (I can’t eat Chinese food anymore or have fizzy drinks) also keep well hydrated as just being slightly dehydrated can send mine crazy. I also take it a bit slower when I get up. In the morning I sit up in bed for a minute before I then stand and again just wait a minute before I start to walk.
It’s a horrible condition and you can end up doing Nothing with your life just because you are scared but it does get easier. If your meds aren’t working ask to change them.
We are all here to help! X
I feel for you. You are very young.
I would push push push for an appointment with a cardiologist, better in person. Many posts ago, I wrote of how helpful a detailed personal appointment was for me, after a lacklustre private consultation and GP casualness. I am early in the journey but an Old Bird.
Only a detailed personal assessment (of what the underlying problems may be, what the current triggers are, heart scans and other tests) will be most appropriate. I think (I am not a medic!) that because it is “common” and “chronic” a one-size-fits-all (dare I call it laziness) advice gets given, of beta blockers and anticoagulants and “wait and see”. Beta blockers may or may not be appropriate and depending on tests an early ablation may be worth considering. My NHS cardiologist fast forwards AF referrals because getting it as good as possible early can prevent later issues.
I have only had 4 recent episodes, and 2 four years ago, all at night which I agree can be frightening. My triggers are depressants - alcohol and sleep, and according to the NHS consultant I saw, apparently due to the rhythm becoming unsteady due to the vagal nerve being affected by depressants. My heart speeds up in an attempt to steady the rhythm, so beta blockers not ideal my heart will resist the attempt to dampen the rate. It is the rhythm that needs steadying, and rhythm drugs may be needed but only if the heart has been assessed as able to cope with them.
It seems all of us have different journeys and mine may be irrelevant to yours! But good medical advice is wonderful.
I was also told that although A&E is not best, unless chest pain, breathless etc, however if I am terrified it is totally acceptable to go and get attention (although mine is 10 minutes away I live in a chaotic city and A&E a rather over exciting place to visit!).
Thank you so much for this message. Yes it seems there are lots of similarities but also differences with it all!
I have my phone appointment next week with the cardiologist and a phone medicine review the following week with someone pharmacist. I'm hoping/planning to ask about having some more tests. The consultant I saw at a&e mentioned ablations and said he often recommends then especially for younger patients buy I guess we will see!
It's really interesting to hear about different triggers and how different medication work for different people, and I do see some similarities about what you are saying with the vagal thing.
I think I am still coming to terms with the fact that I have seen condition that I will probably be dealing with for the rest of my life. I am very grateful that it's not something worse but I guess it all takes adjustment.
Thanks again.
Yes, daunting and you are young. Hopefully research will offer all sorts of hopes! Good luck
Yes originally I was put on 5mg but then reduced to 2.5mg and now back up to 5. I have heard from a friend who is so drug rep for a different blood thinner that this is pretty Ccommon, that for a while they were reducing the dosage but have since realised it doesn't do anything at such a small dose. When I was in A&E this time (before my dose was increased) they said they couldn't do a Cardioversion because I wasn't anticogulated due to the low dose.
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I slept a lot better after reading some posts last night. I had avoided doing any internet research for fear of obsessing but I can see this is going to help me a lot. 
POST CRYOABLATION CONFUSION ! 
Worried
worried
Low Heart rate, should I be worried? 
Newly diagnosed - always worried 
