Hi I'm Delle...just joined this afternoon!

Good Afternoon...just joined this AF forum, seems like a useful place to be.

Searching around for answers and I found you!

My AF hit me like a train in June...came from nowhere just after going to bed, called 999, taken into hospital and spent 16 hours in resus...discharged from hospital after a week in regular sinus....however, for the last 8 weeks I've been feeling so ill been spending most of my days lying on my bed...never connected my dizziness/vertigo etc; with my AF until a GP suggest my meds may be causing symptoms....pulse was 47 BPM last Wednesday, so been told to cut back on my SOTALOL dose...now taking 80 mg morning, 40 mg evening...since then pulse all over the place...no longer the same each time I check...I also as I've said, feel really ill...but because I have cats and no one around whilst the fireworks are banging, I fear calling the hospital again, can't leave my babies alone and scared....but that's exactly how I'm feeling now...hence me pouring my heart out here.

I have had contact with the Cardiologist via his secretary and am awaiting an appointment...but feeling so poorly is a worry...just wondering what any of you would do, all advice appreciated...but please don't make it too scary, I'm already constantly terrified :/ Thank you

29 Replies

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  • Checkout the af association info from here (box on right), assess your stroke risk with the chadsvasc score to see if you should be on an anticoagulant. I expect you should as cardio version maybe indicated if you are back in af. In he uk sotalol is no longer recommended for af, but bisoprolol is usually first choice.

    Sounds like you should see your doctor again to discuss changing your sotalol and considering anticoagulant.

  • Thank you Goldfish..I do take Rivaroxaban as well...sorry forgot to mention that....first time in a forum and feeling shaky today too!

  • It sounds like you may be back in af, but hopefully not too fast a rate, but probably you should see your doctor tomorrow at the latest, but if you feel really bad like when it started then today.

  • I am..have been for weeks. GP knows...but not concerned...sick of feeling rough...it's not good, but I really don't want to be off to A&E again!

    Saw GP twice last week..had home visit and two phone consults too...they are good, but I get scared...a lot! Next GP appointment is Thursday.

  • Hello Delle and welcome to this wonderful forum.

    If you are finding your rate very fast you should seek advice tomorrow at latest. If experiencing chest pain as well then you must seek help now.

    Let us know how you get on. We are all here to help each other

    Best wishes

    Sandra

    Ps AF makes me feel very shaky ad well

  • Thank you Sandra...I'm just so afraid all the time...begin alone doesn't help either...was fine from initial discharge in June until mid September...but since then have felt so ill...and have been out of sinus...not used to having AF so not clued up enough.

  • Delle, we all have found AF very frightening in the beginning as it all feels so out of our control . It is obviously worse for you if you live alone.

    I would urge you to read up all you can from the excellent literature available on the AFA website as knowledge is power.

    You are taking an anticoagulant so that is good. To quote one of our members...AF itself will not kill you, it just feels like it at times.! I still need to remember that myself 23 years down the line.

    Sandra

  • Thank you once more Sandra...23 years hey? How long before they got your meds right?

    I think mine have decided they don't wish to work any more...I also have a stenosed Bicuspid Aortic valve and a leaking Mitral valve...pretty sure they're not helping, in fact I suspect they are causing my AF...not discussed any of this with the cardiologist, saw his registrar on my discharge follow-up, she was useless and knew nothing about me...since then there's been no contact with him until last week and that was a brief query via his secretary...I've already learned that i should seek out the cardiologist and not depend on my GP since joining earlier today...thank you all for helping....

    Delle

  • Hi Yatsiura....can just ask. Have you been taking Warfarin for 23 years?

  • rothwell I was put on warfarin nearly 14 years ago following a3 day monitor. I had been diagnosed 10 years earlier .

  • Hi Delle and welcome to our forum.

    Like you, I live on my own and I know just how scary that can be when AF strikes. I guess I've had AF now for at least 11 years and probably longer unknowingly. I've had episodes where I was sure I was going to die and felt no one understood just how ill I felt. So I tortured myself for years wondering which day would be my last. However, I'm still here to tell the tale and I now wonder why I wasted all that time worrying. After all AF is not really life threatening, even though it sometimes feels like it!

    My heart would bounce around in my chest as though it were trying to get out and it would then make me feel ill for days. I had my third ablation in July of this year and I can honestly say that I feel so much better. I still take tablets and still have periods of AF but they are nowhere near as severe.

    Not all tablets will agree with, or help you, so if your attacks are still as bad as without medication I would ask to try something else. For me Flecainide has been the tablet that helped most. I would urge you to seek the advice of an electrophysiologist (EP for short), that's a specialist who deals with the electrics of your heart. I believe you have to have tried a few medications which have failed to control your condition before your cardiologist will refer you to one. Do not suffer in silence as that will get you nowhere. If I have a problem now, I don't hesitate to chase appointments and if no quick result chase again. All the AF nurses at my local hospital and the one where I have my ablations know me by name. When talking to them always be ultra polite and grateful to whoever you are speaking to, this really goes a long way to getting what you want and that's your aim. Flatter them and say what a wonderful team they are and thank goodness that you have them for support.The nurse at my GP surgery spoke on the phone to another nurse while I was there the other day and I heard here say, 'You know that lovely lady Jean'. It works!

    Please keep in touch and let us know how you get on. If you feel really bad ring the 111 number and ask for advice. You don't have to suffer in silence and we are all here ready to help in any way we can.

    Wishing you well.

    Jean

  • Oh Jean THANK YOU...I feel I have a friend...I am always ultra polite...being old makes you that way...being nice costs nothing, I hate any unpleasantness.

    Since I am a "newbie" I've not connected that last 7 weeks of feeling like death to my AF...I only found out from one of my GP phone chats last week that I could contact the cardiologist...which I did immediately, that was Thursday last!

    I chased an appointment again on Friday but as yet have not been allocated one...bonfire night has been a real pain, I reckon if there were no fireworks (cats too scared to leave!!) I might well have popped to A&E, but I'm on meds so should in theory be okay a while longer even if I am feeling dreadful.

    Because I know almost nothing about the condition I get so scared...I hate checking my BP and pulse, but have done so the last few days...one reading my pulse is 57, next its 77 then it drops back to 62 its all over the place, but I suppose this is what AF is!

    Before this all started 7 weeks ago it was a constant 60 with meds...I suppose my meds need a review...:(

    I feel this forum will take over from FB in my online affections....just knowing there are others who KNOW what you're going through is such a wonderful thing...thank you for chatting with me...hope we can become AF friends :)

    Delle

  • We can become Facebook friends if you play Farmville, wonderful for taking your mind off things! If you were in hospital for a whole week in this day and age you must have been bad 😩. Hope you get more help soon.

  • I was in hospital 6 days...16 hours in resus before going to the ward...I'm absolutely terrified of dying and for the first time in my life hate not "having" anyone. Don't play Farmville sorry Buffafly, so I see were not destined to become FB friends!! ;)

    My lack of experience is my biggest worry...I NEVER want to call anyone and tend to believe it will go away...just don't know when I should seek help...sad but true...!

  • Good morning my friend, it looks like your new AF family on this site are advising you well. This is the most wonderfully helpful forum and I've learnt so much from it and now that you are a member you will be supported too.

    I'm glad to hear that you are always ultra polite, but along with that politeness and charm make sure that you charmingly push yourself forward. It sounds as though you may well be doing that already.

    Our pulse is never really static, even when we're just sitting for ages it can change, so don't be worried about what yours is doing. I guess you know that the normal rate for most people is between 60-100, however recently I've wondered whether that should be changed to 50-100 as so many people appear to have a normal rate of 50ish, sometimes even in the 40's.

    Always here for you and feel free to private massage me if you feel the need (just click on my picture to go to the connection).

    How are you feeling today?

    Jean

  • Hello Jean...thank you...feeling even worse...feel like I'm about to collapse....sensible brain says call 999 but stubborn me say NO..afraid and ill with 4 beautiful cats who need me..so scary xx

  • Why don't you dial 111 and just ask for advice. Or better still ring your doctors surgery and just go for an ECG, so you'll know just what your heart is doing.

  • Thank you Jean...phoned GP, she collected and returned me and I've had an ECG...she's happy with it but has no explanation why I feel so ill...I feel as if I have really bad flu...have done for 8 weeks now...maybe I need to try different Beta-blockers...no idea really...when I started feeling this way I thought I had flu..but for 8 weeks?? Bit silly now! x

  • I'm glad you've had an ECG, that will put your mind at rest now. Sotalol made me feel awful and lethargic. I'd wake up in the morning feeling fine, take it and then have two hours of feeling rough and not much better afterwards. Sometimes I felt I was in a daze. You said you thought you had a pulse that was going up and down, mine used to do that too and it totally wore me out. That could be what is affecting you. Keep in contact and let us know how you get on.

    Jean

  • Thank you so much Jean...it's reassuring to know others have been feeling the same...even if it was dreadful :(

    Had a call re my Cardiologist appointment 10 minutes ago...it will take a few weeks but his secretary suggested that being in constant A Fib can cause the exhaustion I'm enduring...I'd be interested to know if any one else is exhausted, dizzy, breathless and sweating when in permanent AFib.

    Thank you all so much for you wonderful support...so pleased I found you all!

    Delle

  • I can see you have had loads of good advice on here already and all I can add is that you will need to find the right drug combination for you and it is trial and error which is a bore! Hope this will not take too long and that your feeling better. :-) :-)

  • Thank you my Lovely...I do hope so because the last 7/8 weeks of my life have been spent lying on my bed feeling dreadful...first though it must be a bug...never connected my vertigo /light headiness/ mega sweating with AF...but starting to learn NOW..thanks to the kindness of strangers x

  • Delle, are you by any chance in Devon? I only ask because there is an AF support group about to start at the RD&E. if you are interested I will PM you the details.

    Best wishes CD.

  • In South Wales CD...thank you for suggesting this , Delle

  • Glad you found this forum because it is really active and supportive.

    I won't repeat most of the very good advice that's already been given but I will give you some other tips.

    You must insist on a referral to an EP (electrophysiologist). They are cardiologists who have specialised in arrhythmia and the electrics of the heart. Go onto the main AFA website and under heart rhythm specialists select AF ablations. They look them up on the internet. You may have to travel because many hospitals don't have their own ones nor their own cath laboratory.

    Go to the main AFA website and read it and read the publications. You can download / print off many of the booklets and data sheets and also send for printed ones.

    Don't worry about your heart rate. That's good compared to many!!!! That includes me!!! I have my own personal ECG device called a Kardia. I do recordings that are two minutes long. Usually I have been sitting down for 10 minutes when I start. The Kardia saves the aversgevover the recording period and for me that's usually around 85 to 90 bpm. However it displays a rolling average as it goes along and it has shown lowest to be 33 bpm and it's not unusual for the difference between the lowest and the highest to be 40 or 50 bpm.

  • I also meant to say that I found the heat during the summer extremely difficult to deal with and between that plus the AF plus muscle problems it was very hard.

    I am in persistent AF.

  • Welcome to the forum. You have gotten plenty of great advice so far and will only add that you can keep checking in and asking questions without fear of not being heard. The folks here are beyond supportive. I truly understand your fear and have been right where you are. Keep pursuing answers from your Doctors and please be gentle with yourself. Do some deep breathing, listen to calming music, and believe that you will get better. This condition is a real roller coaster ride but you have friends here who will hold your hand. Get some rest and let us know how you are getting along, Gracey

  • Fear makes it all worse (adrenaline), so anything you can do to calm yourself down will make you feel better. You definitely need the help of an EP; there is help out there, but you also need to remember that you won't die of this, so . . . . relax!

    Search on here for details of lifestyle changes you can make which may also help eg diet, supplements, taking magnesium, avoiding coffee and processed food etc They will help you to take action and feel more in control. Anything which helps your general health will help to decrease the AF or make the treatments more effective.

  • Hi Delle. Understand some of your ancillary feelings. Being on your own and having AF is no fun because it also plays with your mind! I was only diagnosed a year ago and find this forum fantastic - fully of info and reassurance and common sense. I had 3 terrible months when I was first on Bisproplol and Rivaoxaban and thought I'd rather live with AF if the tablets made me feel like this. I am glad to report that did improve. On the practical side I have had a key safe installed outside my house, I have joined Cats Protection and Dogs Trust so that if something terrible happened they would look after my animals - for me this helped my anxiety level drop which also helped the AF. a neighbour suggested a wearable alarm so you could call someone if you needed help but I didn't favour this. I do have some wonderful neighbours who keep a discreet eye on me. If they've not seen me out walking the dog they ring or knock! go with the "medical" suggestions everyone else has put on here to get reassurance and further help but try and lower your anxiety levels if you can - easier said than done I know. Good luck

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