Atrial Fibrillation fear

[Big_mick83]

hello, I hope I don’t sound silly in this post but I have been encouraged to talk about my experience to help deal with it.

I am 40 years old and last Thursday I started suffering from palpitations, shortness of breath and dizziness. I didn’t know what was happening, called 999 and was taken to hospital for further tests. I was diagnosed with AF and kept overnight for monitoring and to discuss it with the consultant the next morning. I have been prescribed with beta blockers with a heart scan pending. Since returning home I have odd pains/discomfort around my heart which I put down to “bruising”, odd sensations in my arms and shortness of breath and this all scares me. I am absolutely exhausted and have taken today (Monday) off work but feel guilty for doing so. I am due to travel to London this week for work but everyone has advised me against it (not clinicians, just friends).

Apparently AF in people aged 40 and under is incredibly rare and I’m scared of what caused it, being fearful to over-do anything that might cause my heart rate to go up too much in case it triggers it again. I don’t know what causes it the first time.

I was wondering if people had any similar experiences?

[Tos92]

Hi Big_mick83

I’m sorry to hear of your recent diagnosis. Any new diagnosis, especially out of the blue can be a little scary.

I personally do not have AF, but there are many members on this forum who do. There is also an AF Association which you may benefit from joining too. If you type it into the search bar, it should come up. I don’t have the link at hand at the moment I’m afraid.

Is your AF continuing to be investigated?

I will tag both Autumn_Leaves and Hidden who both have experience of this. I hope they will be along soon to help.

All the best.

Tos

[Cavalierrubie]

l was diagnosed 5 years ago and had never heard of AF until then. It was very frightening and l felt like my life was over, but l couldn’t have been more wrong. There are fact sheets to read on the AF forum and you need to read so that you can understand more. It’s difficult to take it all in at first, but AF is not life threatening, the only risk is of having a stroke, so an anticoagulant is the most important medication. Many people have AF and don’t know they have, so l am thankful mine was caught and treated. We are all different and some of the medications can give you side effects, but your GP and Cardiologist will monitor you closely. You can have a good quality of life again and always remember it is not life threatening. When you have come to terms with it all you can look at your diet, and lots of people benefit from vitamin supplements. It’s important to keep your electrolytes in sync (blood test) and you will be checked for this. Please do not worry, many many people have this monster, including athletes,

[Jalia]

Hi, an AF diagnosis is alot to take in and can leave you a bit shell shocked. I was 48 when I had my first episode and that was 30 years ago. I was considered young then.

As others have indicated do join the AF forum on Health Unlocked . You will be able to access masses of info there and some excellent reading material to expand your knowledge !

I do understand what you mean by being scared to do anything to get your heart racing. I was just the same and as a result lost quite a bit of my fitness. Bear in mind that this was 30 years ago and there was very little info about the condition. It is important to keep yourself fit. Once you have had your scan you should be able to have a plan in place with the help of your cardiologist/GP.

Best wishes

J

[Carys1234]

Hi, just to say you're definitely not alone. My partner was taken into hospital as a result of AF a couple of months ago, and unfortunately was subsequently diagnosed with heart failure (this sounds really scary but is just a term to mean the heart isn't pumping as well as it should and so can't get blood round the body efficiently). We had a bit of back and forth with working out if the HF was causing AF or rhe other way round.Now, following on from getting him on the right medication, his heart function is back up to normal. He still has the AF and so they think it's something he's had for a while, and they make look at further treatment like cardioversion. However actually the consultant was pretty happy with where he is and so won't be jumping into anything. They haven't said to us what caused is, but his mum has been treated for AF previously so quite possibly for him it's genetic.

I know its scary but absolutely do take it easy for a few days, and don't feel guilty about taking time off work. It's much better that you put your effort amd energy into both physically recovering and emotionally taking it all in.

Do also go back to your GP, or call 111 if you have any symptoms you're worried about. I love the NHS but they don't have the resources to follow up with patients as much as they should and so don't be afraid to make a fuss. Think of it as if it were a family member, what would you do to make sure they were well.

If I think back to where we were only a few weeks ago and where we are now, I genuinely can't believe it as honestly when we were first in hospital we couldn't imagine how we'd be even close back to normal. Now, actually, it feels like whilst it's always something we need to be aware of, it's actually not going to rule our lives.

Remember you have age on your side and you will be able to control a lot with lifestyle changes.

[BANIOLMOLE66]

Hi Big_mick83

Sorry to hear about your AF.

I was diagnosed with AF 22 years ago at the age of 24. I collapsed while pregnant. It was like you say a total shock. I have an amazing cardiologist who has helped me manage the AF over the years. I have never taken blood thinners other than before and after ablations as he believes I don’t need them. I have tried beta blockers of varying kinds and ended up taking a drug called flecanide as a pill in the pocket as I didn’t tolerate much else. You will find what works for you on the medication front and tiredness is also completely normal. I can be wiped out for a day or 2 after an episode and then go back to normal. There’s lots of great information available through BHF and the NHS that might be worth a read. For me I don’t drink or have caffeine as they are big triggers but everyone is different. I was told like you when I was 24 that it was rare to see in younger people like myself and then when my daughter turned 18 she was also diagnosed so there are more and more younger people than you think.

[lizzieloo2]

Hi. I will be 69 this year so a lot older than you but I was diagnosed about 10 years ago with AF. Started with me waking up in the middle of the night with heart jumping about all over the place and it made me feel sick. I went to the GP next day and said it was nothing to worry about but told me to ring an ambulance if it happened again! Talk about panic me. She referred me to a GP with cardiology as a specialty and after several trips to A&E was diagnosed with AF and finally referred to a consultant cardiologist. Had all sorts of tests to see if mechanical fault including nuclear medicine test which made me really ill and I nearly passed out. This test said I had probably had a minor heart attack at some time and also had ischaemia. Then sent for angiogram which is the gold standard test. This showed everything was fine, no heart attack, no narrowing of the arteries so AF put down to stress etc. I did find work stress caused a lot of it, also if I had too much to drink so cut right down, and doing too much and getting too tired. My first cardiologist was awful and told me it would get worse and worse with age until I was in AF permanently, would only be able to have so many cardioversions so basically after that I would die. Thankfully, he left and my new cardiologist is great. I take 300mg diltiazem daily for AF (increased from 240mg for blood pressure previously) , 20mg rivaroxaban and 100mg flecainide as required on a pill-in-the-pocket approach. My cardiologist said he didn't want me on flecainide long term and now that my AF is occurring roughly every 10 days, I am having an ablation next month. Originally, after diagnosis and increased meds, episodes were about 9 months apart but have increased gradually over the years. I was scared stiff to begin with but you get used to it and know it's not going to kill you but it's still not nice. I am always tired for several days after an episode but a lot of that is because it happens in the middle of the night and I'm up for hours until it's gone. I don't drink caffeine any more and sometimes find that I need to drink more fluids as dehydration can cause it. Exercise sometimes stops an episode weirdly - maybe it jolts the heart back to normal rhythm but it is definitely worth drinking lots of water or squash. Oh, the one other thing I get is that I can't stop weeing during an episode. Literally every 5 minutes. Hope this helps you

[Outsidethelines in reply to lizzieloo2]

Hi Lizzie, I have the same with needing to wee all the time during an AF episode! I’d not read about that anywhere else. I thought it was probably due to the Flecainide which I take as a PIP? We seem to have quite a lot in common. I’m a similar age to you and my episodes have suddenly started to get much more frequent and much worse. This week I fainted in a restaurant and they called an ambulance which took me to A&E as my heart rate had gone dangerously low. I’m finally beginning to think an ablation may be my least worst option now, although I’m terrified at the thought. I would be really grateful to hear about your experience of ablation when you are able to share it. I’m still waiting to see a cardiologist

[lizzieloo2 in reply to Outsidethelines]

Hi Outsidethelines. I'm glad there is someone else who gets the need to wee all the time. I have mentioned it so many times to doctors etc and they just dismiss it but my first cardiologist did say it was because during AF, the heart releases a peptide which causes the need to wee. I haven't seen or read about it anywhere else. It doesn't happen every time but mostly. Another thing I mentioned to my first cardiologist which he dismissed was that I was told when I was quite young that I had a very sensitive vago-vasal reflex. When I was at school in a play, I collapsed after standing for hours as a soldier. Then when I grew up and started going abroad, I could be in an air-conditioned restaurant but I would start to get hot, feel like passing out and would have to lay flat all the while my heart was pounding and it eventually stopped when I would literally break out in a cold sweat. I am still convinced this is connected to my AF but haven't thought to mention it to my current cardiologist. Anyway, I will indeed let you know how the ablation goes. I am scared stiff after reading all the bumpf but feel that if the AF is only going to get worse with age, there will come a time when I am not fit enough to have the procedure or it will not be as effective so best to bite the bullet now. Take care

[Jambobiatch]

I’m so glad I came across this post today. I am currently in hospital and have had this diagnosis. I am 46. It’s been the scariest few days of my life especially yesterdays events. My cardiologist says with medication he is confident all will be well but if not I will have a procedure to burn away the affected areas.

I feel the most scared ever

[jayjay10000]

Hi Big_mick, just wanted to say thank you for your post and welcome to this form room. I have experience the same as you many times with heart rate and palpitations. It's really scary when it starts to happen and you don't know why. I have been experiencing this since March this year and my appointment with the cardiologist consultant is not until 26th March 2024. I had an echo done on my heart and the hospital found that I have an Arotic Root dilation of 40mm and a Arotic Ascending dilation measurements at 34mm. My Anxiety is bad at the moment and I can't sleep at night I just lay there feeling iam.going to die.Take care keep us all.uptodate

[scentedgardener]

Sorry you've had such a shock. I was told in a very light hearted way, and have never been kept in hospital, so I just endured the episodes unless BP and HR went too high.The British Heart Foundation has loads of information that's easy to read.

The only additional advice I would offer is ask your GP for a blood test to check your thyroid levels. In most cases, I think, there isn't a reason for AF as such, but mine is probably as a result of having an untreated subclinical overactive thyroid gland. It's worth checking it out as it only takes a simple blood test.