A couple of months ago I noticed I was getting out of breath when walking, not badly so but needing to breath more than the activity would normally warrant. Then a few weeks ago I noticed that with the breathlessness my chest also felt tight, although it actually felt like it was more around the diaphragm than the chest. I went to the GP and they said they thought it was heart related and referred me to the hospital. Later they did an ECG and this revealed I have A-Fib and they put me on Rivaroxaban. The hospital then phoned and they said they wanted me to come in for a cardioversion in a months time once I've taken the Rivaroxaban for at least 3 weeks and am currently waiting for that appointment.
I've been doing lots of reading about A-Fib and there's lots of info about the risks, symptoms to look out for to seek a diagnosis and treatments for when you are diagnosed, but there doesn't seem to be much info about actually living with the condition and what to expect from the various treatments and so I'm interested in finding more about relative to my experience of it so far.
My heart rate doesn't seem to be fast at all. My resting heart rate seems to be around 65bpm and when active I've never felt it go fast and seems to be around 100 - 110 bpm when walking at my normal pace (fairly quick). This might be because I also take a beta blocker (Propranolol), which I've taken for years because I used to be benign heart palpitations. I do however have an irregular heart beat and very occasionally it goes very slow, 50bpm or less, I can feel like I'm going to black out but it only last a few seconds and I've never actually blacked out or fallen.
My main symptom, other than constantly feeling a fluttering in my chest, is feeling lightheaded/dizzy and a bit 'shakey'.
I haven't really tried to push myself activity wise but I feel like I can do most things but probably not for long. The chest pains seem to have stopped and the breathlessness has either gone or is very greatly reduced but the dizzy/shakey persists and is pretty much all the time.
I should also point out that I'm 50 years old and very over weight, and so on a diet. I also believe that, whilst I haven't been told exactly what my A-Fib is, I believe it's either Persistent or Permanent as I've been monitoring it with a KardiaMobile 6L, and it always shows as being in A-Fib and I can always feel the flutter.
I know that the cardioversion is not going to keep me in normal sinus rhythm forever and that it may last for days, weeks, months or years, it may not even work at all. I also know that I could have an ablation if it doesn't work and failing that, have a pacemaker fitted. Obviously I'm hoping the cardioversion works and that it works for a long time but I'll cross that bridge when I come to it.
What I don't know is, if it does work will this dizziness go as well, as long as I remain in sinus rhythm? Will I have to avoid being over strenuous? Will I find that certain levels of physical activity are not really possible compared to what I used to do? I know I have to change my lifestyle and I'm already working on that but I think I'd find it very hard if this constant dizzy/shakey feeling is a permanent feature.
Just interested to hear other peoples experience of living with A-Fib, how you feel most of the time and any limitations you've had to accept?
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PeakyO
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This is something I cannot give any feedback on but others on here when they see your post will be able to meantime try not to read to much as it can make matters worse everyone is different but I will also put you the link on to the AF forum will take you straight there and I am sure there will be lots of support copy and paste your post on there as well the more advise you can get the better
Hi PeakyO, you've presented an excellent pen picture. Make sure you present this to the clinician, perhaps offer it in writing, when you go for your consultation so you don't forget to say things and you can listen to what they say.A couple of suggestions, do print out any helpful Kardia reports to take with you. I suggest you also start taking a daily blood pressure reading. Take the raw data with you, but also take an average of your results. It may be best if you can make time to do this twice a day, especially if they vary morning to evening.
Be factual about your weight and BMI.
You are fearing a life limiting future. Try and be more positive. At 70, severe stroke, and also after a year and an ECG loop implant AF has been spotted in May so on Edoxaban now. But over the year since my stroke I started exercising, cut out as far as possible all the XS empty carbohydrates especially alcohol, I love my beer even more now, I have to earn it (#explorebeforeyoupour) . Still just tipping into obese BMI 31. I started running having never run in my life since school. It gave me something to feel in control. It answered the question what can I do to help the doctors and help myself. It's been life affirming. You may have to personalise what you can do, but don't settle for managed decline, not at 50.
Finally at your consultation ask for a full review of your medications particularly the role and reason for a long time on beta blockers without a clear diagnosis in your description of what they were helping.
There are recent NICE guidance papers on Direct Oral Anti Coagulants DOAC prescribing and avoidance of strokes.
I hope this helps and you can find a good plan forward.
Hi sorry to hear you're feeling so grotty, I had cardioversion last week, and I feel great now, no more shortness of breath going upstairs, dizziness has gone and fatigue improving. I was advised to rest for a few days after and then to gradually increase activity levels, I hope all goes well for you and you feel better soon.
Cardioversions are usually used in the case of AF to ascertain how your Arrhythmia responds. If successful an ablation can be offered.Sometimes CV works to restore NSR for some length of time but AF will return eventually as it is a progressive condition ,although not lifethreatening.
Medications such as Flecanide or betablockers can be very effective, as in my case ,for many. Over time these can become less able to maintain NSR at which point ablation is a good choice.
Some people are not suitable for medicated route or prefer not to,and go straight into ablation route.
All the symptoms you are concerned about should disappear when you get back into NSR.
I originally had the same signs of AF, mostly lack of energy, that's what got me to the GP's, he immediately said he suspected AF as I had already had a heart attack, ECG confirmed this and he put me on warfarin.
Long story short, cardioversion worked for a few months, a stressful episode put me back into AF (check for your triggers, but stress is one of the biggies), eventually I was put on flecainide and have been in NSR for the last five years.
I have permanent, persistent AF and hopefully I have learned to live with it.
It's early days for you yet and learning to
accept it is a good start. I take bisopropol
to keep my heart rate down, mine is in the 70s 80s range but easily shoots up if I walk too fast or too long. I stop and rest regularly if I need to. It's good that you are trying to get your weight down, I try to
I was on Rivaoxyban since a stroke few years ago...l had no problems at all with it....l usually wake up in a morning with flutters but not usually any other time...I've been taken off Riva and put on Edoxyban as I've heard it's a less xpensive medication....I've noticed no change ....
Thank you all for your replies and links. It is very much appreciated. I know everyone is different but it's helpful and interesting to read how people actually feel with A-Fib rather than just the practicalities of the various treatments that medical people tell you.
Hello Peaky, what you have written could be a resumé of my experience. I find that I get AF when I am nervous or stressed eg angry. I was put on Rivaroxaban 20 which was miles too strong for me as I ended up with bruises all over and scary red eyes. The cardiologist I subsequently saw - some years ago - told me that there were weaker versions of Rivaroxaban but the 20 was what the manufacturer instructed, and that as far as the cardio’s then knew the manufacturer had not provided any research relating to strength of dose. I was glad to know this and I now take the weakest pill at 10 and am very well, no bruising or red eyes, and tip top blood results. I am just recounting my history and make no recommendation as I am not qualified to advise. I would strongly suggest that you discuss the strength of dose you are taking with your GP and cardiologist. I went on a medically suggested diet and can march around with fewer stops for breath. We are all unique individuals and what works for one may not for another, but take heart, a positive attitude/approach really doe help.
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