Don't know where to turn...

[teecee60]

I am 53 years old, female and have had bouts of aFib for many years. Fortunately, the aFib episodes were infrequent but I did go to the hospital a few times over the years to convert. My cardiologist said not to worry and everything else was fine. Six months ago I was given a "pill in the pocket" for my episodes plus Metoprolol to lower my heart rate. They were working until about a month ago when I started taking Prednisone for an unrelated problem. Coincidentally (or not), my aFib episdoes started daily and sometimes occurring 2-3x daily. Since I suspected the Prednisone could be the culprit, I discontinued taking them (under a physician's guidance) and saw my cardiologist a few days later. He told me to come back in a month after the Prednisone wore its way out of my system to see if I have any improvement. I have also significantly reduced alcohol intake and totally eliminated caffeine from my diet. I am also trying to lose weight and am following a heart healthy diet.

My aFib episodes may have slightly reduced but I am still getting flutters daily. My new concern is the light headedness I am feeling. Sometimes after getting up from sitting (even without flutters), I feel whoozy and have to stand still for a moment to let it pass. I am afraid this is a sign of something more serious that I shouldn't be ignoring, but I don't go back to the cardiologist for another 2 weeks or so. Should I be concerned? I also feel a little "out of breath" during my aFib or flutters.

I stay active and exercise daily with either swimming or walking briskly. Usually during exercise, I feel fine (with no flutters0 although sometimes I feel more fatigued walking like my legs feel heavier than they should be. My aFib episodes usually come during periods of rest...sitting at my desk at work, watching TV in the evening or when I go to bed. I am also starting menopause so I am not sure if any of this is related to that.

I just feel like a hypochondriac worrying about this all the time and I don't want to overreact, but I'm confused as to when I need to take action with these disturbing symptoms that seem to be getting worse & more frequent.

Thanks for listening and offering advice if you can.

[Beancounter Volunteer]

Hi Teecee

Welcome to the forum, and to another 2000 or so sufferers all of whom know exactlyu how you feel.

AF is a real mongrel of a condition effects us all slightly differently but there are some very common factors, breathlessness, fatigue, tiredness and general lethargy are all common effects. Feeling whoozy is not so good and that needs checking to see if it's anything else, but you might be suffering from a slow heart rate when not in AF (also quite common) so the wooziness will occur if your heart rate is low.

You say you've seen a cardiologist, honestly you need a specialist, and a specialist is an electrophysiologist (we call them EPs) they are cardiologists who specialise in rhythm problems, and who will be much better suited to listen to you.

OK what to do when you get an attack.

First and foremost don't panic, an eminent EP tells his patients AF is very unlikely to kill you, but it doesn't feel that way at the time. Very true.

What to do really depends on how you feel, and I sure others will jump in here, as going to ER with AF can not always be a nice experience they seem to dismiss us often. Certainly alcohol is often cited as a trigger you will need to keep that right down, and you also need to Google Chads2VACS score, it's a scoring system for us A Fibbers to check on our stroke risk, (the biggest challenge we all face) and if you are 1 or 2 you need to consider anti-coagulation.

In the meantime ask anything you like, we are mainly friendly and will always try to help

Be well

Ian

[teecee60 in reply to Beancounter]

Thank you , Ian, for your kind words. I will check out that website.

[Kaye58 in reply to teecee60]

Hi I agree always wise to be checked out. However metopropolol can reduce your BP and both my hubby and I often have a spinning room on standing suddenly. Many Drs just say better a lower BP and feel dizzy than a high BP and the accompanying risks. So we've learnt to rise slowly or have to stand and feel like we've had a free Alton towers ride. I think it's best to let us patients know when adding meds in as some of the papers in the tablet box take some reading to understand. hope you feel better soon it's so good listening to others as we share so many similar issues even tho we're all so different. Take care

[Rellim296 in reply to Kaye58]

My husband has postural low blood pressure and I sometimes find him at the top of the stairs holding onto the wall because he's so giddy. If his blood pressure is taken when he's sitting down it's much higher than when it's taken when he's standing up. Always on the low side, it drops much further if he gets up too quickly so he has to do things like getting out of bed slowly, as you say Kaye.

[GivEmkeL in reply to Beancounter]

Well said, Ian!

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Hello Teecee I have had AF/SVT for about 3 years with occasional dizziness due to infection along with AF.

Just recently have been dizzy every morning for around 3 weeks, then it increased to on and off most of the day, there were no palpitations however, so I asked my GP to consider it as a separate issue and she gave me a referral to get an echo on both sides of my neck to check to see if the blood flow was working, happy to say all is well.

We went through other things it could be and I had worked out it could be stress, as I have been organizing a builder and a new garden for around 3 weeks now which may have been the cause and I am inclined to agree with her.

To counteract this have been advised to take water first thing in the morning before anything which I have done and it has now gone, but I also did my yoga breathing before jumping from one thing to the next to pace myself again. Might be useful for you as this wasn't the general dizziness of getting up and down quickly.

Keep well

[BobD Volunteer]

I agree with Ian and by the way welcome. What you may not realize is that AF is always progressive so what you used to have is always going to be less than what you now and will have. Sorry to tell you that but better to understand that whilst I agree you should speak to your doctor and arrange to see and EP I doubt that you need to worry about anything new, just natural progression of your long standing AF.

Bob

[davythom in reply to BobD]

Really worried, does that mean my medication will stop working too and I'm going to get worse? haven't had AF very long, I feel bad enough now, don't think I will cope if gets a lot worse. How long does progression take? Does every body get worse? because I have read that some people stay the same for a long time. Don't know what to think now.

[Rellim296 in reply to davythom]

AF is very personal and we all experience the same things a little differently. It doesn't improve, but it doesn't necessarily get worse, just more frequent. We mostly begin to worry less about it as we gain control over it and have more experience. There are lots of options and knowledge is improving all the time, so treatment is progressing all the time.

[BobD Volunteer in reply to Rellim296]

Really good answer that. AF may be in your life but the more you understand the less of your life it becomes. Learn to do what you can and look forward not backwards.

Bob

[davythom in reply to Rellim296]

Hi Rellim, thank you for your reply. I am really grateful for your positive encouragement. I am reading as much as I can about the condition and I understand that some years ago there was not the option of a catheter ablation, so research is progressing all the time.

Davy

[Rellim296 in reply to davythom]

Absolutely, davythom. Progress is being made all the time and AF did not attract a lot of attention until comparatively recently. New techniques are constantly being developed. I had a laser balloon ablation which is not as innovative as it was a year or so ago, but I think only a couple of places in the UK offer it. At the moment!

There are, apparently, some GPs who take the view that patients should postpone ablation and use it as a last resort - i.e when medication ceases to control - as it does not necessarily wave a magic wand.

Personally I regret letting things slide for a while. I ignored dodgy heart rhythms for about 20 years - they started when I was in my early forties and I'm approaching 68 now. Five years ago I had a life changing trip by ambulance to A & E and had to face the fact that I do have a dicky ticker. A rather tentative ablation and medication kept it going acceptably well to start with, but some side effects of flecainide started to creep in. I think I'd have done better to take less of it and use it more just when needed as a pill-in-the-pocket. A second ablation (the laser one) has really moved me forward, and I wish I'd had it sooner. I feel in a much stronger position now, partly because I have absorbed so much good advice here.

I really felt very down last summer. I felt I'd aged 20 years suddenly but I feel on top of it now, and as your ability to cope with AF increases, you'll probably find you are in control and it has less impact.

[davythom in reply to Rellim296]

Hi Rellim, Thank you for sharing your experiences. This site is a blessing and an education too. It's good to know how people such as your self are dealing with AF,

Davy

[CDreamer]

I agree that sounds like postural low BP, maybe med induced but I found that AF does that anyway. Hydration most important, water is best as tea and coffee can act as diaretics. I have had POTS all my life but it got so bad with the AF sometimes I couldn't even lift my head off the pillow. If I lay prone it always improved, but on occasion that could mean for days! If you go onto the POTs website you will find quite a lot of good advice to minimize symptoms.

And you need to ensure that this is low BP first so worth asking your doctor at your next visit!

Just returned from Spain and I noticed that I was feeling much better, took my BP and low and behold it was 120/70, for me unheard of! Usually 90/60 at best! Returned home and now down to 105/65 which is still good for me but I notice the difference. I saw my EP last week and mentioned it to him and he asked if we ate out a lot which of course we had and he put it down to salty food, which I had guessed had made the difference so I am now adding more salt into my diet, I know the advice is always to reduce salt intake but for me it really helps and I am in NO danger of high BP. I monitor myself by the way with a wrist machine which gives good readings but when in AF it is difficult to get a reading and it will show error message.

potsuk.org

[Hidden]

Hi Tee, I did find when squatting and then standing up quite quickly I would feel whoosy and would have to pause for a few seconds.

I just put it down to my low blood pressure/low pulse and not the best circulation. However, I have noticed since having my AF stabilised with Flecainide and other lifestyle changes this feeling has much improved. I don't worry about it.

Don't feel like a hypochondriac - I am convinced most of our feelings are sent for a reason and you need to search for that and be tough with medics whilst maintaining their support - a bit of a balancing act!

[teecee60]

Thank you so much everyone for your responses. It is so nice to find a support group of people that understand what I am going through. I will be back often!