How I got my diagnosis : Just a bit... - Atrial Fibrillati...

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How I got my diagnosis

Vonnegut profile image
21 Replies

Just a bit more about how I was finally diagnosed with paroxysmal AF. I never felt that I’d got back to “normal” after the shingles with increasing fatigue when my daughter invited me to join her at Bath Spa for her birthday as I’d been with my husband for my birthday some years before and really enjoyed it. However, my birthday is at the end of January when it was cold but her birthday is at the beginning of September when it was jolly hot! She said that putting ice on your face after the sauna ( I think) was very good for the complexion and not wanting to appear a wimp I went along with it and the other things! When we emerged we had to wait around and didn’t have much to eat and my heart felt weird, so when we were driving home, my husband suggested we pop into the hospital in Stroud while it was happening, where they decided I should go to Glos. Royal and in an ambulance rather than us going in the car. The lovely paramedics had diagnosed me with paroxysmal AF before we arrived there and explained what it was so presumably my heart got back to normal on the way! Previously, I had contacted my surgery several times after fainting etc but they would just take a blood test and tell me I was fine! I then spent the worst night of my life in the acute ward at Glos Royal, where I had to make up my bed and then listen to machines beeping, having my blood pressure taken at regular intervals with a machine strapped to my arm and being interviewed by various people who came round and asked virtually the same things whenever I might have managed a little sleep! In the morning, my husband visited with my own clothes and a copy of the Guardian. For once we actually managed to read all of it before they finally let me leave with a pack of Eliquis Apixaban 2.5, to take should another episode occur. I was also told I would receive an echocardiogram shortly to check my heart. This didn’t happen for a month or so and it showed there was nothing wrong with the structure of my heart. One of the docs at the surgery wanted me to take the 2.5 Apixaban daily but after I’d pointed out that I was very sensitive to drugs she agreed to half that. She didn’t even arrange a follow up appointment but the pharmacist told me to be in touch if I had any problems and said he would call in a week to see how I was getting on. Three days later, feeling very tired and weak, I popped in to see him. He took my pulse and told me to stop taking the drug immediately and the doc agreed!! Even 1.25 was too much for me! We are all different.

Apologies for the length!

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Vonnegut profile image
Vonnegut
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21 Replies
Paulbounce profile image
Paulbounce

Hi Vonne. It can be a real mix-and-match with meds. What works for one doesn't work for others. It's great news your heart is structurally - take comfort from that.

Have a great weekend.

Paul

Vonnegut profile image
Vonnegut in reply toPaulbounce

Thanks for your response but may I add a little reminder to check your spelling before sending!!

Paulbounce profile image
Paulbounce in reply toVonnegut

My bad. Spelling corrected. What am I like - darn typos.

Have a great wekend.

Paul

Edit - meant weekend lolz.

DawnTX profile image
DawnTX in reply toVonnegut

Seriously? Someone takes time to be kind and that’s what you said to them 😱 all I can say to you isWOW🤢

Vonnegut profile image
Vonnegut in reply toDawnTX

I wasn’t being nasty if you meant me- I was just making a useful suggestion and didn’t think Paul took it badly/ apologies to all if you think it was out of place.

Vonnegut profile image
Vonnegut in reply toPaulbounce

My reply disappeared before I finished it. It was the lowest dose of Bisoprolol that proved too much for me- pharmacists are much more knowledgeable on drugs than GPs seem to be and have always been very helpful. As the flecainide I take twice daily means I don’t get many episodes of AF and when I do, an extra flecainide pill puts an end to them in around two hours I rarely take an anticoagulant or Bisoprolol either as heart rate in AF rarely very fast inehuc case I do, as instructed by the lovely EP we saw privately after my surgery failed to come up with anything and I found him somewhere here!

Paulbounce profile image
Paulbounce in reply toVonnegut

pharmacists are much more knowledgeable on drugs than GPs seem to be and have always been very helpful

I agree this is often the case.

Paul

jeanjeannie50 profile image
jeanjeannie50

That's quite a story of yours Vonne, thank goodness your pharmacist was looking after you.

Are you small built for these pills to have had such an effect and are you taking an alternative anticoagulant now?

Hope you stay well now.

Jean

Vonnegut profile image
Vonnegut in reply tojeanjeannie50

Not small, a little over average for a woman ( I think the same as our PM!) and have never been overweight.

DawnTX profile image
DawnTX

my heart structure is fine. Also that didn’t keep a fib and a typical flutter away. There seems to be no rhyme or reason sometimes.

Vonnegut profile image
Vonnegut in reply toDawnTX

It’s an intermittent electrical fault and you know how difficult they are to fix! I remember when we had one with the dishwasher and in the end it was replaced!

DawnTX profile image
DawnTX in reply toVonnegut

That is the way that I try to explain things to people. You could have a garden hose with a hole and tape the hole but later have a whole down the opposite end. Trust me, I feel like I could go get my medical degree sometimes, but that is because my EP and my tech for my unique pacemaker, enjoy talking and explaining to me because I really have an interest.

I also had an unusual ablation called vein of Marshall ablation. The Pioneer of it is the one that did mine.

Did you ever hear a song I don’t know the name but the words are one of these things are not like the other. They will show a row of dogs. They might be all white, but one has dots. Well that song is my song lol the tech that works with my EP with me teases me about why I can’t feel like everyone else. Lol my pacemaker is so new that they have had to call senior level to get some answers or double check on things nothing life-threatening. During my first check up, they discovered my back up switch so to speak was left on. I had complained about feeling beets and thumps. It turns out that when that is on I needed. It creates an echo of sorts. I wonder if it yodels. I try to picture funny things going on and they’re like locking a fib and a room by itself so it can’t bother me anymore. My AV node is like a mountain, since it was ablated. We have a product called Mucinex here and there is a little green booger man that tries to bother people. That’s what I picture a fib looking like. We have to lighten up a little bit or we will go crazy.

Best of luck with everything. Tomorrow I have an echo to see what my heart failure is doing. There is a possibility it could reverse, it could stop progressing or it could continue. My AP is hoping for a reversal. Eventually it could take up to six months for real answers. All I know is how good I feel right this second.

Vonnegut profile image
Vonnegut in reply toDawnTX

We only live in the moment so that’s great and good luck for tomorrow!

MummaSoap profile image
MummaSoap

I’m pretty sure Gloucestershire Royal Hospital has declared an emergency on their care levels and unfortunately they cover a large area including places like the Forest of Dean, Tewkesbury (possibly slightly higher) and Bourton on the water.

It’s a shame that you felt it was the worst night of your life but at least you got some answers as to what was causing your symptoms and it sounds like things are moving in a positive direction for you which is encouraging to hear.

Have your episodes reduced in frequency now you’re taking flecainide? Or does it reduce the length of the episodes?

Vonnegut profile image
Vonnegut in reply toMummaSoap

My experience at Glos Royal was well before the pandemic and the paramedics had already diagnosed and explained what my problem was. No episodes since back on 100mg of Accord flecainide twice daily - more episodes when on the substitute stuff but never lasted more than a couple of hours with an extra one with the Kardia tracking the journey. Hopefully, now I have proper flecainide again I won’t have any more ( or very few)!

Ppiman profile image
Ppiman

My night in hospital after being admitted with fast atrial flutter in 2019 was also the worst night of my life. After an initial excellent experience at Leicester's Royal Infirmary A&E and feeling mightily impressed with our NHS, it all went downhill rapidly from there.

I was very efficiently transferred by super paramedics to a "holding ward" at Leicester Glenfield which, apparently, had just the one cardiologist on duty and he or she was busy attending an emergency on another ward. By this time, it was past midnight, and the place was mayhem thanks to two loud-mouthed patients who saw it as their role in life to keep everyone else awake. To everyone's disgust, the staff ignored them and saw no reason to help the rest of us have any sleep. The consultant finally arrived around 3am, but I had no sleep whatsoever. The next day, thanks to problems with the pharmacy it took till 8.30pm to get my drugs.

It was a chaotic shambles and a horrific time.

Steve

Vonnegut profile image
Vonnegut in reply toPpiman

I think your experience trumps mine! But we both survived in spite of it, attempting to be positive about it!

Coco51 profile image
Coco51

Given that you say you have had episodes where you fainted. Has that/did that affect your ability to drive? (If you do drive). My partner recently fainted twice, out for about 10 seconds. He has bouts of AF, but they never caused this before. The consultant is doing diagnostic tests, including stress echo, 14 day monitor etc. His heart structure is fine, he's on Apixaban and Bisoprolol, but the GP told him not to drive till there's a firm diagnosis - which I start to suspect there may not be!

Vonnegut profile image
Vonnegut in reply toCoco51

Only fainted once after getting out of the bath I think and had also experience rather wild heart thumping but of course I was fine when I visited the surgery! I rarely drive now because of the fatigue though.

Coco51 profile image
Coco51 in reply toVonnegut

Interesting. In our case, the GP has forbidden driving. And now she has said that, the car insurance won't be valid if there's an accident.

Vonnegut profile image
Vonnegut in reply toCoco51

That time I fainted was well before I finally got the PAF diagnosis- if I hadn’t gone to Bath Spa to celebrate my daughter’s birthday with her I’d most probably still be waiting to find out what was wrong given how our surgery works, sadly!

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