Shock diagnosis

[Fannyphasbees]

Hi. I was admitted to hospital last Friday with heart rate of 144 and told I have AF. Told without anticoagulants I was risking major stroke, heart attack or pulmonary embolism. Now on beta blocker, Warfarin and Fragmin. Worried 😟. Was working on day I was admitted and feeling very anxious. Don’t know what future holds.

[BobD Volunteer]

Justs remember it is 20 years since my diagnosis and I'm still here kicking **** . Just not as hard as I used to though.

Go to AF assoication main website and read till you drop. Knowledge is power.

[Fannyphasbees in reply to BobD]

Thank you . My friend told me Bob would be a great support. She wasn’t wrong.

[Buzby62 in reply to Fannyphasbees]

Here is a link to all the reading material Bob refers to.

heartrhythmalliance.org/afa...

Start with the AF Fact File I would.

You say your HR is all over the place, just be aware that instantaneous HR readings on devices are irrelevant while in AF, it’s the average HR that matters and is measured my counting beats over 60 seconds. Some devices give you an average while doing an ECG over 30 seconds.

Best wishes

[Fannyphasbees in reply to Buzby62]

Thank you so much.

[Ebenezeer1938 in reply to Fannyphasbees]

Hi I am 86 and had Wolfe Parkinson White syndrome since birth. Had one of first ablations in 1991 then 19 clear years until going into PAF in 2010.I have a great EP at Kings College and I take meds including warfarin. Had my first fibrillation yesterday evening for two years which lasted 2 hours. Anxiety does not help so just try to live life as normally as possible. Ebenezeer 1938

[Fannyphasbees in reply to Ebenezeer1938]

Thanks so much. These replies are certainly putting my mind at rest and I feel it’s a bit of a wake up call to destress. ☺️

[Fannyphasbees in reply to BobD]

Hi Bob. I’ve been told that Warfarin is the only anticoagulant I can be on because of interactions with Tegratol (carbamazepine). Do you know if this is correct?

[BobD Volunteer in reply to Fannyphasbees]

Sorry I am not a pharmacist so no idea on that but I have been on warfarin since 2004 with zero problems.

[Fannyphasbees in reply to BobD]

Thank you.

[Teresa156 in reply to Fannyphasbees]

Hi,

Yes that is correct. I have been put on warfarin, in preperation for an ablation. I take a very low dose of tegretol. This is because tegretol interacts with all the other newer ACs. My EP consulted with the European Society of Cardiology too to make the decision. I’ve had no problems on it - I’ve been taking it just over a month now, but haven’t quite reached the desired INR just yet, but getting there.

[Fannyphasbees in reply to Teresa156]

Thanks so much. I had no idea how long it might take to get to desired INR. It is 1.7 at present and I’m on 4mg.

[Teresa156 in reply to Fannyphasbees]

I was on 8.5mg up until this week. My INR was up to 1.7 and I’d been on 8 for a week before that. I’m now on 9mg and I’m hoping it’s jumped up again.

I started on 5 mg though, but it stayed around 1.0 for a couple of weeks. I would add that my diet is quite rich in vit K and I’m a pescatarian. I’ve limited brocolli, but still eat it every other day and in smaller quantities but I know a lot of my other foods have a fair amount in, so I think my doses will have to suit my diet. I’m on Tegretol extended release 200 mg x2 a day. What do you take?

[Fannyphasbees in reply to Teresa156]

Same 200 twice a day.. my first day I was on 9 mg then discharged on 2mg and Fragmin injection each day. Warfarin was increased to 3 on Tues and then to 4 yesterday. Fragmin has been stopped as GP didn’t think necessary.

[Teresa156 in reply to Fannyphasbees]

Hi Fannyphasbees,

We’re on a fairly low dose of tegretol I think, judging by things I’ve read on line, but it certainly shows how we are all very different doesn’t it? I’ve been on tegretol for over 25 years, so it’s well established, how about you? i’m only staying on warfarin for three months after the ablation, but will have to go back on warfarin at 65. Are you over 65, or have been told you have a higher CHADs VASC score? I hadn’t heard of Fragmin, but can see it’s also an anticoagulant ( and a bridging agent that is given with warfarin at the start) so I can see why you would have been told you no longer need that as well as warfarin. It might affect your INR though if you have recently come off fragmin, as it sounds like it might be that that helped increase it as well? By the way, I never knew what the numbers meant a few months ago. 1.0 is around the normal anticoagulant levels and 2.5 or thereabouts ( we need to be between 2 and 3) purely means that your blood takes twice as long to clot, or 2.5 times to clot etc. We won’t bleed and bleed 😊

I take it your Afib is paroxysmal- in that it comes and goes? Have you had just the one episode?

Good luck with everything - and you’ll find lots of help and support on here.

[Fannyphasbees in reply to Teresa156]

I’ve been on Tegratol since 1994 . No fits since. This was the first episode I was aware of. I was 65 last December.

[Teresa156 in reply to Fannyphasbees]

Ah, you’ve been on them a long time then, like me. Epilepsy was never diagnosed, they couldn’t identify what mine were, despite tests. I used to ‘black out’ or feint, just for a minute or two, but I’d know it was coming just before. I had it since I was about 18. Tegretol stopped them completely too.

Yes, the fact you are 65, warrants the ACs.

Many of us have watches that keep a record of when we have episodes that may help you (they can cause more anxiety though)

[Fannyphasbees in reply to Teresa156]

We sound very similar. I’ve been loaned a Kardia monitor by a friend but the GP poopooed its use. I’m at the early stage of the journey.

[Fannyphasbees in reply to Teresa156]

Sorry to be ignorant but what do you mean by ACs?

[Teresa156 in reply to Fannyphasbees]

Sorry Fannyphasbees, I meant anti coagulants. The new ones are also referred to sometimes as NAOCs.

I think personally your GP was wrong to dismiss a Kardia. lots of us have them on this forum and my EP and cardiologist think they’re very good. Carry on using it to capture any future episodes, if you have them, as it will prove useful and you can show specialists. Unfortunately GPs know very little about afib.

[Fannyphasbees in reply to Teresa156]

Thanks I realised when I thought about it. The results are consistently 133 and higher. I was at GP on Friday who held my wrist and said it was 88!!

[Rpxy]

Try not to worry to much, the medication will help stabilise your heart beat. I agree with the other post to join AF support groups for knowledge and chat with others. Hope you feel more settled soon.

[Fannyphasbees in reply to Rpxy]

Thank you. It is nice to feel supported. 😃

[Fannyphasbees in reply to Rpxy]

I do thank you😀

[jeanjeannie50]

Welcome to the forum Fannyphasbees.

Be Aware you are most unlikely to die from Atrial Fibrillation (AF). I used to think that the way my heart bounced around I would surely be found dead next day. Still here 19 years after it first kicked off! I really wish that someone had told me I wouldn't die from it when I was first diagnosed, so here I am telling you that information.

Changing your diet to a more plant based one, avoiding any foods containing artificial additives, not allowing yourself to become dehydrated, cutting back on sugar, alcohol and caffeine, also losing weight (if it's needed) will all have a beneficial effect on your AF. Artificial sweeteners were a sure trigger for my attacks.

Make sure you don't slouch, or unwittingly do shallow breathing while watching tv or if you're online. If you do your heart will protest. Also avoid tight clothing around your waist or chest.

Perhaps try supplementing with magnesium, any type except oxide (I use glycinate from YourSupplements and also take taurine, zinc, vitamin B complex, D3, K2 & C). I feel fine and there's little I can't do now, despite being in constant low rate AF. Or at least I think I am, I don't check these days.

I take Warfarin too and have no problems at all with it. Note that it does not thin the blood in any way, just stops it from clotting so quickly. You should not notice any major difference in the way you bleed.

If you type: York Cardiology Sanjay Gupta into Google it will show a lot of very sensible talks from this cardiologist in a style everyone can understand

Hope this info will help you. Please ask any questions as members here love to help and most of us were diagnosed exactly as you were. We know how frightening it can be when first told we have AF. You will be fine, so stop worrying. None of us are medically trained in atrial fibrillation (AF) but we have a rich experience of coping with it.

Jean

[Fannyphasbees in reply to jeanjeannie50]

Thank you so much Jean. I do shallow breath and tried vagas nerve breathing last night which I think helped. I’ll keep in mind the other suggestions you have made. X

[Omniscient1 in reply to Fannyphasbees]

Golden words Jean If only hospitals were more guiding when they spoke to people when they are diagnosed and undergoing their first experiences.

[philologus in reply to Omniscient1]

I'll second that!

I went to my local hospital for a heart scan because I'd collapsed while out walking my dogs.

Once the scan was completed I was taken to a room where someone was looking at a computer screen.

Without looking up, he told me that the scan showed that I had Heart Failure at level four and that my GP would be in touch when they sent him the results.

No explanation, no leaflet, nothing!

I stood up, walked out, and started wondering what level four was. Was it on a scale of 1 to 10? Was 1 high or was it low? To me, at that time, HF was something you died of. I didn't realise that it just meant that my heart wasn't working efficiently.

My wife, who has dementia, was waiting for me. What was I going to tell her?

I got a shock when I got home and googled it and found that level 4 was bad.

The "caring" profession?

Fannyfasbees: Get all the info your brain can process. Ask questions on this site. There are no "silly" questions.👍 (If there were I could have won prizes for asking them.😜) Maintain a sense of humour. My wife says that in my case AF stands for Always Farting.

Allow yourself some time to let it all sink in, and then take control. Start making plans.

Feeling that you have knowledge and control takes away a lot of the stress and uncertainty.

[Fannyphasbees in reply to philologus]

Thank you. I did laugh at what your wife calls it . I think I’ll adopt that one! It may be run of the mill to the consultant but bit is pretty shattering. Just had my second INR done and waiting to see GP as I’ll need more Fragmin and sick note. ☺️

[Reidel]

The important thing is to get really good medical support, and if you’ve got that then they will get you stabilised pretty quickly and hopefully that will settle things down with a fairly short period of time. Meantime, take it easy, and I know it’s what everybody says, but try not to worry about it too much.

[Fannyphasbees in reply to Reidel]

Thank you so much for taking the time to reply. It is so helpful to hear of so many other people who have the diagnosis and are living good lives. Psychologically it is so huge when I’m usually looking out for other people , to be given stark details of possible stroke etc. can’t wait for Warfarin level and heart rate to stabilise. X

[Bagrat]

jeanjeannie50 has provided a concise and sensible response, as have others. I've had Paroxysmal AF since 2011 and it is shi**y and scary at first. Over time you will discover what is normal for you.Are you still in hospital or home now. Great you have fragmin to help with anticoagulation till warfarin kicks in. Hope you are either back in normal rhythm by now or heart rate has reduced with betablocker.

You will get lots of support here.

[Fannyphasbees in reply to Bagrat]

Thanks for your reply. I was sent home after one night but heart rate is still 144at times. Seeing nurse and GP tomorrow as need to get it reduced and INR done .More Fragmin and Sick line too! Glad to have so many positive responses. When you’ve lived a healthy life style with good diet, non drinker , non smoker and working full time it comes as a shock.

[opal11uk]

I have had P/A/F for over 20 years, early days caused a stroke, I'm still here so I hope that reassures you somewhat. Stressing and being over anxious about your diagnosis will not help so find out as much as you can about this condition, what you can do to help yourself and go forwards my friend.

[Fannyphasbees in reply to opal11uk]

Thank you sip much . I feel much more reassured about this now having read information and supportive replies. It is wonderful that you took time to send this. Thanks

[TracyAdmin Partner]

Hello

Thank you for your post, I am sure many of the members on the Forum will welcome you and offer their advice based upon their own experiences. Have you visited the AF Association webpage? heartrhythmalliance.org/afa/uk You will find a wealth of information, videos, resources to provide an understand atrial fibrillation. If you would like advice from our Patient Services Team, please contact [e-mail]

Kind regards

TracyAdmin

[Fannyphasbees in reply to TracyAdmin]

I have checked it out . Thank you

[Omniscient1]

Sound advice from everyone,I would add that when you're more into this you may find that you're tired, lethargic maybe, this probably isn't the AF but the beta blockers, so you may need to get the dosage 'tuned'. But, welcome, all the best to you.

[Fannyphasbees in reply to Omniscient1]

Thanks for the advice.

[OzJames]

A cardiologist will assess you to see if maybe a cardioversion will get you back into normal rhythm. Did the hospital mention this? I have been cardioverted 3 times and back in sinus rhythm. I was first diagnosed 31 years ago and living a healthy and happy life. My early AF was only once every 5 years

[Fannyphasbees in reply to OzJames]

It was briefly mentioned but waiting for the 3 day monitor appointment as it’s only a week today since I was admitted. Feeling much more relaxed now I’ve had such positive responses. ☺️ thank you

[OzJames in reply to Fannyphasbees]

You never know you could be the same as me only get AF once every 4 or 5 years for nearly 30 years. Mind you that changed in 2022 and I’ve had a few episodes since then but don’t let it rule my life and try to keep it in the background

[Fannyphasbees in reply to OzJames]

Thanks for this. I’m feeling much calmer now. These responses have certainly helped.

[secondtry]

The good news and not so good news about strokes & staying alive.

If memory serves, it is estimated there are around 10%+ of the General Public are wandering around not knowing they have AF (asymptomatic) and they are still not dead. Many of us here now realise they had AF for many years before first diagnosis. So don't panic over that one, just a calm frank discussion with your trusted medic before implementing your decisions as you gather information.

The not so good news is that I understand some batches of the C-jab have been responsible for certain clots, so it is timely that you and the medics have you under good supervision, just in case. Again no cause to panic as from what I read I understand less than 1% have been affected with illness or death that had the intervention. And protocols to deal with the adverse consequences are slowly proving their efficacy.

[Fannyphasbees in reply to secondtry]

Thank you

[Christobel23]

Hi don't worry once on blood thinners and meds you will be ok. I have had afib for 8 years now. Some days my bpm is 148. Initially I was scared but have learnt to accept when my heart plays up. I've had an ablation which didn't work I'm now on bisoporol dronedarone and warferin. I'm waiting for an echocardiagram to see how my heart is coping. Afib is debilitating but have been told by cardiologist not to be too concerned. Please don't be too anxious but log episodes to have a record of how you are. Obviously get in touch with your doctor if it becomes worse

[Fannyphasbees in reply to Christobel23]

Thanks for this. I’m feeling much calmer now.

[MWIC]

Don’t be too hard on yourself - remember when I was diagnosed and that took some doing in itself and thinking Jesus what the hell. But there are options and “treatments” which will help and will allow you to just get on with your life which is at the end of the day what we all want to do. Try to relax, arm yourself with good information on the options you have - loads of fantastic people on here with great advise and decide with the help of Cardiologist/ EP what the best options for you are - it’s not the end of the good times honestly!! Best of luck

[Fannyphasbees in reply to MWIC]

Thank you do much. I am feeling far more positive a week on because of the support you have all given me. ☺️

[MWIC]

Great and glad to hear it - stress and anxiety also a factor with AFib so really helps to keep calm, deep breaths in, hold and breathe out and definitely helps

[Fannyphasbees in reply to MWIC]

I watched a YouTube video and practiced along and it certainly helped

Thanks

[MWIC in reply to Fannyphasbees]

And me haha and realised I had no clue how to breathe 😂

[Fannyphasbees in reply to MWIC]

I was aware that I’m a shallow breather and will try to breath more deeply. It does help.

[AustinElliot]

Sorry you have to join a club no one wants!

This group has been a huge help to me.

My diagnosis about a year ago was a shock as well and created a lot of anxiety. Most of that is gone now. I am just trying to avoid any of my known triggers, I live in a very hot area, Texas, so we will see if I can deal with it better this year than last.

I am only on 180 mg Diltiazem which I tolerate well, and Flecainide as a pill in the pocket. Everything else is good and healthy. Cut out caffeine and reduced weight to the normal BMI. Have to have a second Colonoscopy, oh Joy. Schedule for a Wolf Mini-Maze in August.

Wishing you good fortune on this journey.

[Fannyphasbees in reply to AustinElliot]

Thank you for your reply. I feel so comforted to know my life will go on. It is good to feel the support . I’m just at the start of the journey. ☺️

[Desertflowerchild]

My mother is 93 years old and has lived with afib for decades. I'll share that with you because I found that somewhat reassuring when I was diagnosed in 2023.

[Fannyphasbees in reply to Desertflowerchild]

Thank you so much .It does help. 🌺

[Wilky57]

Hi Fannyphasbees. Your post could have been written by me just over 4 weeks ago. The exact same thing happened to me and it was such a shock. I have never had a long term illness/condition so never taken medication. Although I am overweight I have always been fit and healthy so it came as such a shock to leave hospital with 2 lots of medication. I had to wait to see a GP for almost 3 weeks and , because of this forum, I was able to ask the right questions. There is a very long wait to see anyone on the nhs so I have decided to see someone privately. I’m still struggling to believe I have anything long term but I will get my head around it. I hope it all works out for you. I would be interested to know the course you have to follow. I know everyone is different but it does help to know there are so many others dealing with similar things. Good luck with it all.

[Fannyphasbees in reply to Wilky57]

Thanks for your contact. My heart is less pounding but my head is pounding today. Waiting to hear from cardiology. I hope you get on well. The forum is a great help for me mentally.,🥰

[Wilky57 in reply to Fannyphasbees]

It is for me too. I’ve got so much help from the lovely people on here. I also have had a headache for weeks. The GP said it was tension. I’ve had very few headaches in my life but, at the moment, I seem to be getting everything. I am on my third type of beta blockers as the first 2 made me feel so ill. I’m also trying hard to lose weight but I’ve actually put it on instead. I’ve asked to be referred for an echocardiogram but, by looking on the NHS app, I can see it hasn’t happened yet. Take care. I hope your headache gets better soon.

[Fannyphasbees in reply to Wilky57]

Thank you. I hope you can be sorted out soon too.

[Redactrice in reply to Wilky57]

Hi, I also struggled with beta blockers and avoided taking them for a decade because they made me feel much worse than AF itself. Now I have no choice since paroxysmal AF became persistent last autumn, and yes, I am struggling with side effects, including weight gain, which I am trying to do something about.

As for echograms -- if you can afford to, you can book one privately and have the result sent where you choose (to yourself, your GP, your cardiologist). Then it will be right in your hand when you have a cardiology appointment, instead of having to wait for the referral, which I'd expect to be as slow as everything else in the NHS at the moment. (This is not criticism of the NHS. They are desperately short-staffed and trying to perform miracles. The long waits are not down to them; they are due to political choices.) Having a private echogram or a private cardiology consultation does not commit you to staying with private care afterwards.

Advocating for going private feels like being the snake in the Garden of Eden, but although one may argue it's unfair to jump the queue, there is also the argument that it shortens the queue for everybody.

[Redactrice in reply to Wilky57]

I forgot to say -- private clinics are springing up like weeds and it feels a bit like the Gold Rush out there (mixing metaphors with abandon), so before booking my private echogram I checked with my cardiologist that he would accept a scan from that particular clinic. He said fine, go ahead.

[Fannyphasbees in reply to Redactrice]

Thanks.

[Cavalierrubie]

You will be ok. You will get all the help and more on this great forum. I could not have coped without it so read up and know there are many of us who are on this journey. It is scary and a shock at first diagnosis, but is not life threatening and treatable. You can have a good quality of life again. Listen to your body as we are all different. Everything in moderation. You will smile again.😊

[Fannyphasbees in reply to Cavalierrubie]

Thank you. Yes a week on I feel better mentally and physically. The forum has helped massively. Thanks for your support. 😊

[JOY2THEWORLD49]

Hi

BBs did not reduce to control my heart rate. I ended up going to an interested private h/specialist.

Today take (after 2 years 3 months)

Diltiazem 125mg AM for h/rate control.

Bisoprolol 2.5mg PM for hyper-tension control

PRADAXA 110 x twice day.

=. 123/69. 60s h/rate DAY

Always 47avg bpm Night

Metopolol gave me pauses at night. Breathless and exhaustion. Bisoprolol BB is better for AFers.

A Dr will put your meds up but a heart specialist who is interested in you will experiment (I'll say that because diltiazem 1/2 dose 180mg was too much and brought me down from 120 plus at rest to 51 in 2 hours!)

So caution is the direction.

With no follow to stroke or review of meds it took 2 years 3 mnths to get on the correct meds for me.

I am controlled by meds successfully.

But AF has slowed me down.

cheri JOY. 75. (NZ)