Newly diagnosed. Is this normal? - Atrial Fibrillati...

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Newly diagnosed. Is this normal?

widgetcook profile image
13 Replies

Hi all,

Apologies for long post but I’m worried.

Recently diagnosed with afib after trip to A&E. was already on waiting list to see cardiologist (9 month wait!) due to suspected afib.

I’m currently wearing a 48 hour monitor to assess what’s going on.

At the moment I have several episodes of afib every day. I would say between 10-20. Lasting anywhere from a few minutes to 4 hours.

When I’m in afib my heart rate is between 80-100. I also have episodes of tachycardia 100-160 but heart rhythm is usually normal during tachycardia episodes.

Whatever is going on is making me feel extremely unwell.

I’m constantly exhausted, frequently lightheaded, short of breath, palpitations, headaches, pins and needles and struggling to do much at all.

I’m 40 years old, female with a young family and really struggling.

Is this normal for afib?

How quickly from experience can I expect to get help after my 48 monitor?

Please tell me it gets better then this!

Thanks for listening

K

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13 Replies
Jalia profile image
Jalia

I'm sorry to hear how you are struggling. My AF circus started in my late 40s with a young family so I have some idea of what you are going through. The only difference is that then I saw a cardiologist quite speedily. I have to admit that I did get my appt brought forward after phoning the cardiologists secretary and explaining how I was suffering ( in tears, I'm slightly ashamed to admit.......

🙄)My last 48 hr monitor was a few years back and I had a call from cardiologist and cardioversion arranged in a few days. Of course these are peculiar times but hopefully you should hear quite soon afterwards. If not, pick up the phone !!

Things will get better. Do learn as much as you can about this horrible condition by acquainting yourself with the very helpful literature on the AF Association website. There are lots of helpful people on this forum so do post again and let us know how you are getting on.

Best wishes

J

widgetcook profile image
widgetcook in reply toJalia

Thank you. I’m hoping it will get sorted quickly. I have to take the monitor back Wednesday. Hoping I can sleep ok with it on!

Adalaide2020 profile image
Adalaide2020

Hi sorry you are really struggling. No two afibber are the same I'm afraid. One thing I might suggest is to phone 111 when you are experiencing pins and needles or chest pain. They may get you looked at and then your symptoms will be recorded. Your 48 hour tape will be collecting all your info and once the pros have this they can make a decision. It's easy for me to say but try to relax , is there anyone to help with your family? Only do what is essential K. I got af in my 30s and I have had to learn to put me first. I'm 65 now and am still dancing, walking my dog, gardening. Doing what I love a d when I'm in af ( I get it about twice a week for about 18-24 hours)I stop and take care of me. When the kids are at school , rest. If your exhausted ask for help from family and friends if you can. You sound scared and I'm not surprised, you are experiencing a lot at the moment that is why I say only do what you have to. If you want to talk to a qualified nurse phone the British Heart Foundation, others on this site have and have found it beneficial. My heart goes out to you K. This condition can get better, can be managed successfully, your quality of life can improve dramatically. I dont have the answers but I do know that informing yourself is so important. Research and ask questions. Take care 🌻

Golfer60UK profile image
Golfer60UK

Good morning, as a regular with AF and after ablation Atrial Flutter, would recommend you check out how much a private consultation with a Cardiologist would cost, as there is medication available to 'control' AF. Where do you live and I'm sure there will be someone on here who can advise on a Cardiologist

Best of luck

Dave

TracyAdmin profile image
TracyAdminPartner

Welcome to the Forum, I am certain all the Members will be able to offer advice and support, alternatively, you may wish to visit the AF Association website to view our online patient resources or view our video library for further information or contact the Patient Services team for advice heartrhythmalliance.org/afa... Take care, Tracy

Ppiman profile image
Ppiman

I had atrial flutter, another type of arrythmia rather like your afib, along with persistent tachycardia in 2019, with a rate of 155bpm. I felt very similar to how you describe. One of the things persistent tachycardia does, I was told, is to reduce the efficiency of the heart, and the effects of this, it appears, are experienced inexplicably differently with some sufferers able to carry on normally and hardly notice any difference, whilst others are brought to a near stop.

Stopping the tachycardia seems more important than stopping the arrhythmia in terms of helping the heart, but reducing the rate too far leads to other symptoms, especially when the blood pressure drops alongside, as often happens. This happened to me when I was given bisoprolol and digoxin (this latter was the only drug that reduced the rate to below 100).

Add to this the unquantifiable and hard to determine effects of anxiety and fear, which I've come to believe can be, in and of themselves, very debilitating, and the overall effect can be truly awful to suffer.

I would wait to see what the monitor shows, but if it shows not much, then ask for a 14-day Mio monitor as this is almost bound to capture what is happening. After this, you should find you'll see a cardiologist much more quickly, or it might, if you can afford it, be wort paying a couple of hundred to see one privately, if that is acceptable to you.

Best of luck!

Steve

Buffafly profile image
Buffafly

I can’t add anything much useful to what has already been said except to answer your question. The answer is that it is what is normal for you as we all have slightly differing symptoms. Unfortunately some GPs who have only seen elderly people with AF think that is typical but younger people with Paroxysmal AF (comes and goes like yours) often have much more extreme symptoms. At least you weren’t sent packing with a diagnosis of anxiety which has been some people’s sad experience 🙄. Your AF is fairly slow (mine goes up to 150 +) but I am thinking the fast regular episodes may turn out to be the ones having the worst effect.

It would be surprising if you didn’t feel anxious but if you can control the anxiety a bit it may help the symptoms such as pins and needles which can be a sign of ‘overbreathing’. If you look up ‘box breathing’, ‘square breathing’ or ‘breath control’ on this site or elsewhere you will find some helpful advice.

I hope you get some answers from your tape soon 💜

Buffafly profile image
Buffafly in reply toBuffafly

PS I got results from my last tape in two weeks but……🤷🏻‍♀️

widgetcook profile image
widgetcook

Thanks everyone. I’m also working in a busy kitchen full time which I guess doesn’t help.Luckily I have a fantastic gp who has really pushed for my cardiologist appointment and has prescribed me low dose bisroprolol to start taking tomorrow when monitor comes off so I’m hoping that will have some effect.

Gp also lent me a Kardia monitor which is how my afib was picked up. Then a trip to A&E after a 4 hour episode got me the 48 hour monitor so I’m hopeful x

Buffafly profile image
Buffafly in reply towidgetcook

I’m amazed you are able to work still, especially in a stressful busy kitchen. If it’s possible to have some time off I would. Best wishes, please let us know the results when you get them.

widgetcook profile image
widgetcook in reply toBuffafly

Thank you. Unfortunately it’s my own business so time off is not an option! Have closed today though as taking the monitor back so can have a rest day x

Buffafly profile image
Buffafly in reply towidgetcook

😟

Paulbounce profile image
Paulbounce

Hi Widget.

"Apologies for long post but I’m worried"

Apologies are not needed - of course you are worried.

"Please tell me it gets better then this!"

Yep.

OK it can be a bit of a roller coaster I must admit. However I think good news is ahead of you. There are a number of reasons for this comment. First of all you know you have the condition (many don't) and there are treatments to help. The second reason is that treatments and research are moving forward all the time. You are young and will benefit from these - I bet you do.

Sit tight with this one - things will get better for you. It's no fun at the time I know but better day's are ahead for you.

"I’m 40 years old, female with a young family"

You'll deal with it - you may not feel like that right now but you will. I have a gut feeling about this one.

Good luck ;-)

Paul

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