Living With A-Fib Questions

[PeakyO]

Hi All, I was diagnosed with A-Fib only a few weeks ago so everything is still very new and a bit bewildering.

I think I was first aware that something wasn't right around 3 months ago when I noticed I got much more out of breath walking up a hill then I would normally be. A couple of days later I noticed the same thing just walking in the street, albeit at a brisk pace. Over the next few couple of weeks I noticed once or twice that, when walking outdoors (where I can walk at a faster pace than indoors), I would get a little out of breath and also started to feel a tightness in my chest. I don't know whether the tightness was relevant or not as it actually felt like it was around my diaphragm or lower and I was having problems with my lower back at the time too.

I decided to go and see my GP who said they thought it was heart related and because of the tightness referred me to the Rapid Chest Pain clinic at the hospital. A week later the GP did an ECG and it detected A-Fib and so they immediately started me on Rivaroxaban. I then had a phone call from the hospital saying they had seen the ECG and that they wanted me to come in for a cardioversion but that I couldn't have one until I'd been on Rivaroxaban for at least 3 weeks. I'm currently waiting for that appointment.

In the mean time I'm trying to change my lifestyle. I'm very over weight and so dieting like mad, lost 5KG in 4 weeks so far, but, other than lose weight, I've just been told to 'listen to my body' when it comes to activity.

In the past 2 weeks I've found that the breathlessness has pretty much gone and I don't get chest pains anymore but I don't know if that's because of the diet, because my back is now much better, because I've started taking magnesium, vitamin B6 and Vitamin C supplements, or whether my A-Fib is just going through a phase and will return, although I bought myself a KardiaMobile 6L and that shows I'm still in A-Fib and it feels like I've been in it permanently for at least 4 weeks, quite possibly longer.

My heart rate doesn't seem to be fast. It seems to be around 60-70 when resting but can go down into the 40's briefly and when it does it feels like I'm going to black out, but it only lasts a couple of seconds and I've never actually passed out. This might be because I've been on beta blockers for years because for around 30 years I'd suffered badly with ectopic heartbeats which the GP put down to stress and anxiety. So I know that these will be slowing my heart down anyway but I don't know by how much.

My main symptom which is driving me mad and making me feel low is that I feel slightly dizzy most of the time. Not badly so but enough that it feels like the room is moving when I move my head. I also feel slightly 'shaky', like I'm not at full strength.

I've been reading up on A-Fib and all the different treatments and there is a wealth of information out there. However, I can't really find any info on what it's like to live with A-Fib and what to expect after treatment. For example, I know Cardioversion doesn't work for everyone and that it doesn't always last but, if it does, do you feel back to normal afterwards? I'm just trying to understand what impact this may have on my physical abilities to do things and whether I can expect this dizzy / shaky feeling to go or whether I'm going to feel like this for life.

Obviously I know you have to avoid triggers, which I think for me is anxiety, but if you've had a successful cardioversion, ablation or had a pacemaker fitted, when you are not in A-Fib, do you generally feel 'normal', can you do the same things you did in the past?

[BobD Volunteer]

To be honest the dizzyness is not generally normal. ( I hope you are not driving at present till this is sorted out). We generally advise people to seek medical attention if they feel dizzy or have chest pain.

Well done on the weight loss and do keep it up. This is probably the number one most important life style change to make.

Our main website (Atrial Fibrillation Association) has a wealth of information on all aspects of AF and its treatment so worth reading till you drop as knowledge is power.

Ask questions here and we will try to help.

[Omniscient1]

...what BobD says... Plus, you may have been in AF for ages, not just when you had your recent difficulty. Some of us are in permanent AF but apart from a lack of performance (I cant keep up with Usain Bolt anymore) don't see any other symptoms. Not had the dizziness btw.

Gary

[Omniscient1 in reply to Omniscient1]

The AF is indicated by a small change in the shape of your heart beat graph on the ECG,so it will know you're in AF even if you feel ok (as I do), so you may be 'living with it' already. I presume you have had regular interventions from the medics as you have been on beta blockers for years (ie they see you periodically to make sure you still need them), right??

[PeakyO in reply to Omniscient1]

No, I've been pretty much left to manage my own medication. At least that's how it feels. I first started getting heart palpitations when I was in my 20's and my GP said it was anxiety, gave me some beta blockers and it cleared up right away. About 15 years later, I started getting it again, went back to my GP who said it was stress and just told me to have counselling. This went on for a couple of years and eventually they referred me to the hospital where I can a 24hr ECG and an echo cardgiogram. The echo came back clear and the ECG showed loads of ectopic heartbeats and the GP then put me on beta blockers for a few months. Jump forward a couple of years and I was going through a stressful time again and the palpitations had come back. GP suggested I take propranolol as not only would it help with the palpitations but has a mild calming effect too. Ever since I've taken propranolol daily. When I run out, I just get a repeat prescription. The palpitations never went away completely but were massively reduced so I've absolutely no idea when the palpitations became AF as they feel the same in the chest. The only difference between them I noticed was the breathlessness and the slight light headed feeling which started about 3 months ago. It was only that difference which made me go to the GP. It's really annoying because the default response from my GP all the time was, 'it's anxiety', even when I didn't feel anxious. I kept going to them saying it doesn't feel right but I think they got cheesed off with seeing me and just wanted me to accept it was anxiety. I know I do suffer with anxiety, being autistic doesn't help either, but they couldn't accept that the thing that was making me most anxious, was not being listened to!

[Omniscient1 in reply to PeakyO]

All I can say is that I was on meds for something for years and didn't notice that they were having no effect. I was put on repeat prescriptions and left there (not AF related btw). No follow on checks from the drs apart from BP.

[secondtry]

The AF journey is a bit of a marathon not least because you have to identify with the help of the medics what works for you. The good news is that there are a variety of different drugs available if the first don't work. Better lifestyle changes take months/years so slowly change your diet and stress factors.

You seem to be 'on it' so keep going!!

[Witchmama]

Oh my gosh! Please go see a cardiac doc the very least. You need to see a cardiac electrophysiologist. I don't think your GP is listening to you. And please get your thyroid checked out by a REPUTABLE endocrinologist. Your story screams Thyroid disorder to me.

[PeakyO in reply to Witchmama]

I've had blood tests and Thyroid was normal

[Witchmama in reply to PeakyO]

Did they do Free T3, Free T4, Reverse T3, TSH, TPO antibodies, Tgab antibodies? A lot of docs will do a TSH only and say your fine, but there is much bigger picture than that.

[Ppiman]

I think many will be able to relate to your history. And I wouldn’t be too worried!

Anxiety probably was at the heart of things initially, but who knows? I had ectopic beats much like you describe. More recently (2019 at age 65), they “became” atrial flutter and I had to have an ablation. Like you, the trouble seemed in the left chest / diaphragm area rather than my heart. I have felt the dizziness, too but not all of the time. That could be anxiety but also possibly ear trouble such as vestibulitis / labyrinthitis - follow this up with your GP, but, I think it will be something that will soon pass. AF causes many symptoms as it reduces the heart output slightly and different people react individually to this. Many get no chest discomfort, for example, but I do - into my back, too. Many get slight breathlessness, especially walking up a slight incline for some reason. I don’t get this noticeably.

The cardiologist I saw suggested I might never have had panic attacks in my younger days, only AF attacks that were never identified. That certainly explains a lot to me as I was rarely anxious at all when I had an attack - but, that said, I am an anxious personality type especially over health matters.

I think your GP has done a sterling job, myself. Their experience in these things is what is needed. I would trust him or her every time. You’ll be fine - just take the reassurance that will come your way soon to heart. Time will help as you realise things are more okay than you more think!

Steve

[Bluenomore]

Hi , I was wondering if it could be your medications that are making you feel dizzy , maybe some of them don’t mix with others that might be worth looking into? I also have anxiety and find that when I am stressed I feel quite dizzy and also have the shaky feeling so it’s worth considering it could be that , I find relaxation and meditation help a lot with that.

For me , an ablation cured the AF for which I am grateful every day but we do not know how long that will last so fingers crossed , but to answer your question in would say I’m mostly back to how I was before , but I’m careful about avoiding triggers such as alcohol and caffeine.

I hope you feel better soon and get the correct treatment.

[JOY2THEWORLD49]

Hi

5KG in 4 weeks!

Wow!

I've lost 6KG over 5 months. The first 3KG was easy - smaller meals.

Add more exercise walking up the fairly steep incline down to shops and even steeper to get up to the top and start of my road to go down.

Loss of weight certainly assists with AF. I was told overweigh backin Dec 2021 so ablation negative, time with AF neg and then ECHO dimensions point to a NO because of an enlarged LV chamber. They never did a cardiversion on me after stroke with AF.

Slow your diet down as losing a few lbs per week is better on your body.

cheri JOY. 74. (NZ)

[En85]

Do you know last time your pulse was taken before the ECG that showed the Afib? Knowing since how long the persistent afib is going it’s very important.

You should see a cardiologist, did the GP refer you? I was diagnosed almost 3 months ago and I paid privately for a cardiologist specialised in electrophysiology. I’m still fighting to get to see a cardiologist on the NHS. Did you receive an appointment for the cardioversion? I’m waiting for that too. My cardiologist said if cardioversion works, which is a big “if” if you don’t know for how long you’ve been in persistent, only then you can actually see if the persistent afib was giving you symptoms. This is because when it’s persistent/permanent, like in our case, it becomes your “normal state”. According to my cardiologist if I have fatigue, problems sleeping or anything caused by the afib, I should feel the difference straight away once in Sinus Rhythm (hoping that it will last long enough).

[PeakyO in reply to En85]

Well, having had ectopic beats for around 30 years I am hyper aware of my pulse and so, whilst it wasn't 'medically' recorded, I'm aware of what it was and wasn't doing. In terms of heart rate, it's never excessively fast. It always feels like a normal rate for the activity I'm doing. When I'm walking around it's generally in the 90-105 range. When I'm resting it's generally in the 65-75 range. However, I've been on beta blockers for something like 7 years and so this will be having an effect. Maybe if I wasn't on them, it would be much higher. Several years ago I went to the GP because I'd have episodes where, to me, it felt tachycardia as when being active it would suddenly shoot to 150bpm and stay like that for an hour or more after activity stopped. ECG's at the time showed no AF but maybe they just didn't capture it at the time. I do know thought that my heart is beating irregularly, but this is nothing new. This is pretty much how it's been for around 30 years with the ectopic beats. Because it's so common, there are times I'm not aware of it, particularly when I'm active and so I didn't always know how long these episodes went on for in the past. Sometimes I know it only lasted a couple of hours, sometimes it felt like days but it could have stopped at some point and restarted. Now though I can feel it (just in my chest not actually measuring my pulse) being irregular 90% of the time. In the 10% when I can't feel it, so far when I check my pulse I still feel it as irregular so I think I've been in permanent AF for at least 4 weeks and quite probably longer, maybe 2 months or more but it could be longer than that. It's just impossible to know when the skipped beats stopped being ectopic and became AF.

As for seeing a private cardiologist. Not financially an option for me unfortunately.

I don't know who I'm being seen by at the moment. I haven't 'seen' anyone other than my GP. All I know is that I was referred to the Rapid Chest Pain Clinic at my local hospital which I and my GP thought would be to do a stress test. Then I had an ECG at my GP which showed AF and that got sent to the hospital. I then get a phone call from the hospital from someone who I think was a cardiac nurse (can't remember), who took my medical history, explained what the ECG showed and said that they wanted me to come in for a cardioversion, and later for an echo cardiogram and then later still for a CT scan of the veins in my heart (or something like that). They said it there was a 4 week waiting list for Cardioversions but that I couldn't have that until I'd been on blood thinners for at least 3 weeks. They also said that the echo would probably be in around 6-8 weeks but the waiting list for the CT was 6 months. However, they said that the CT wasn't really needed as it was unlikely to show anything based on my history and symptoms and was really just a belt and braces approach. That was all 3 weeks ago, and so far I've heard nothing more. Other than phoning the cardiology department at the hospital and hoping the receptionist will know, I don't know who to actually speak to. It doesn't feel like I'm actually seeing a cardiologist, I mean I know that one will be reviewing my notes etc but it doesn't feel like I'm going to actually speak to one at any point but maybe I'm wrong. It just feels like I'll come in at some point for the cardioversion and if it works they'll send me on my way perhaps with some arrhythmia medication and say "give us a call if it comes back". I'm sure it won't be like but I definitely don't feel like I know what is going on or, more importantly, when it's happening and who I can talk to about treatment options.

[En85 in reply to PeakyO]

I’m sorry to read this, I think it’s not right that you can’t speak to anyone about this. I did try the BHF helpline when I was totally lost with the diagnosis and they gave suggestions also about how to go for the GP and getting the medical attention I needed.

I was referred for cardioversion almost 4 weeks ago and I didn’t hear anything from anyone. They gave me a monitor, god knows for what. And I will see a nurse next week, again not sure why.