Arghhhh evil AF back!: Hello all x... - Atrial Fibrillati...

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Arghhhh evil AF back!

booboo73 profile image
20 Replies

Hello all x

Sorry I have not posted in a while having such a terrible time. My partner has been diagnosed with thyroid cancer and will be operated on in 2 weeks so my stress levels have been very high and so worried about the future and don’t need this bloody AF at the moment….So this has been happening and could do with your thoughts….

Was ecstatic …. Not had no major incidents in 5 weeks thought I had it under control especially with all the worries I have. Bob & Peter – I took your advice and wrote to Dr Fay and I went to see the AF nurse, Shona at Shipley last week. She was lovely and I felt really at ease with her and YES I am going to be seeing Dr Fay!!! Will be In about 4 weeks so I am really pleased about that.

So last night I was cooking at 7pm and just knew AF was lurking, I took an Alivecor reading and it was 160bpm, I really thought that it would last a couple of hours and that would be it. Nope was still there this morning, I rang Doc who said take another Bisoprolol and she would ring me back in 3 hours and we did every 3 hrs till 6pm tonight and heart rate was still 140bpm and Bp was okay, lowest was 90/60. didn’t feel ill just tired and slightly dizzy. So my Doc said go to A&E – 24 hrs is far too long – I was completely terrified and started crying hysterically - think just a build up of everything with my partner plus my Mums anniversary coming up… so was packing my bag for hospital and sobbing and yes you guessed it back to NSR 55bpm just like that. Could that be my cure – sobbing!!???

Anyway I am so upset about it coming back, never had it so long before at the most 12 hours, does thin mean the bisoprolol are not working anymore (I am on 1.25 daily and that’s it as I am at 0 stroke risk) Does this mean it’s getting worse and will have to up my dose. I am scared it will come back tonight and have no idea what to do – is it likely to? I know none of you have a crystal ball but I am just so scared. I feel like I should be on warfarin but they said the risk of internal bleeding could be as bad, Arghhh so many things to think about and I really need to be fit and healthy for my other half. I feel like leaving it 24 hrs is too long at 160bpm but my Doc said not and I trust her completely – I just don’t know what to do – Someone please send me a cure…lol!!

Sara xxxxxx

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booboo73
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20 Replies
BobD profile image
BobDVolunteer

Sara I am so sorry to read all your problems but is it any surprise that you are stressed with your partner's problems? I think you would be super woman not to be worried and of course with this blasted AF worry is not a great idea. For what it is worth I know that Matt will be good for,you. He is such a nice bloke, just meeting him is like the sun coming out. but don't tell him I said that or he will blush.

Regarding what to do during events all I can say is that I found staying as calm as possible and riding it out worked mostly for me as going to hospital usually just means sitting around in a strange place waiting for nature to take its course. Of course if you have chest pain or are passing out then go ASAP.

Right now I wouldn't even think about warfarin which would be just another thing to concern you.

Sorry but my magic wand is broken this evening but I'm thinking of you so here is a big cyber hug ((((( ))))).

Bob

booboo73 profile image
booboo73 in reply to BobD

Oh thank you so much Bob for your lovely kind words and hug!! Yes I was very scared and tried to ride it out but my Doctor said to go to A&E, I am on my own at the moment in the house so I guess she thought I would be safer there as I suffer from anxiety badly, I asked her if I would have a stroke if I didn't go but she said not but the risk would be the muscle thickening in my heart if I left it too long leading to heart failure although very unlikely, well I think that is what she said to be honest I was very upset at the time.

So I am shattered not slept since I don't know when, my Alivecor still says 55 so Im happy for now and really too tired to worry so hot chocolate and bed!! My doc is ringing me at 10am so hopefully we can come up with a plan x Thanks again Bob x x x

PeterWh profile image
PeterWh in reply to booboo73

I know it is hard but it's f GP suggests going in the future then do it. Absolutely nothing to do with anxiety but you are being monitored in hospital and they have already done all preliminaries and tests and then if things change it is easier and quicker for them to give you things - but it is not really time critical. One time when I had very low BP I drank plenty of water and went to bed with my feet raised on two or three pillows and some towels and slept it off. My GP told me off because she said that I definitely should have gone by ambulance to A&E and been monitored there.

PeterWh profile image
PeterWh

Very sorry to hear all your bad news. Firstly keep your chin up. Also fantastic that you are being seen by Dr Fay himself.

Was your AliveCor showing that you were in AF as well as a fast HB?

For future reference you need to ask your GP what she thinks the lowest and highest BP values should be for YOU. 90/60 is low and no wonder you felt faint. I was the same at around 90/70. In my case I was at or below 100/80 for the best part of a week and when I went to my GP she said I should have been in sooner and that for ME she wants it to be 120/80 and not too much lower (even though many charts show lower as being in healthy range) as I have heart valve problems and one atria severely dilated.

As to HB again you have to leave it to her judgement for you but don't forget you can always call 999 and then the paramedics will make an assessment and accurate recordings. For both HB and BP ask Dr Fay when you see him what he thinks your top and bottom ranges should be and the durations.

I would also have your bag packed on the basis that if you are all ready you won't need it!!!!

PeterWh profile image
PeterWh in reply to PeterWh

I had almost finished typing my post when I saw Bob's f.lash up so I deleted some of the things that were very similar to what he said because they are such good advice. Cyber hugs as well.

PeterWh profile image
PeterWh in reply to PeterWh

Not medically qualified but personally wouldn't worry about the bisoprolol not having appeared to have worked very quickly because my logic is that as it is a drug that is intended to be taken every twenty four hours (in a morning) it won't be a quick release but a slower one and would certainly be effective over at least 12, possibly 16 hours - ie during the waking day. I may be wrong though!!!!

booboo73 profile image
booboo73 in reply to PeterWh

Hi Peter, Yes I was in AF all the time - I have 45 readings since last night to confirm haha!! I have always had low bp and didn't feel too bad with it although I was really scared when I went to lock my chickens up as it's quite a walk, I put my phone in my bra just incase!!!

A question for you and Bob, do I need to see an EP as well as Dr Fay, I am unsure about this and certainly don't want to insult him by asking to be referred!!! I am so lucky that I can see him, bit embarrassed about my cheeky begging letter to him but too late now lol!!

Thanks for the hug Peter x Im terrified to call 999 as I did for my Mum and she never came home again plus when I last went to A&E I was in the same bed as she was AND the same resus bed - Arghhhh!!!!!

x o x

PeterWh profile image
PeterWh in reply to booboo73

No doubt then!!!!! Good idea to take phone with you I must admit that if I get up during the night to go to the toilet I take my phone with me just in case - though never had to use it then!!!!! Got into that habit after my ablation.

Don't worry about being cheeky - you need to get the best things that are for you and it has worked!!!!

If it were me in your situation I would wait and see Dr Fay and then see what he says and which EP he suggests you should see. I would also phone the medical centre to see if there is the possibility of seeing him before Christmas (use the pretext of saying that there is one day that you can't make because your partner is going into hospital for thyroid cancer. However you have to decide what is right for you.

It was a horrible bit of fate about being in the same bed as your mother was. However the main think now is YOU and your health - this is not meant to be harsh.

Well called 999 around midnight one night last June because I felt really bad and had high BP (very very unusual for me) and HB was only around 130 (too high for me according to GP). First time ever in an ambulance apart from when I was in a road traffic accident (I wasn't bleeding or anything). I am glad I did call 999 but now wish that I had done so earlier that evening (I had been hovering as to whether to do so or not for at least a couple of hours!!!).

Try and relax (I know easier said than done).

booboo73 profile image
booboo73 in reply to PeterWh

Thanks for that Peter, I have thought about it today and I will definitely go to A&E next time. I am going to put all my notes from Doc and cardiologist in a file and I can just take it with me to save going through it all again. x x

PeterWh profile image
PeterWh in reply to booboo73

It was a godsend that I took my whole file in when I went in to A&E in the ambulance because they were able to see everything easily and immediately saw additional problems by looking at ECGs which were in their own section as I file everything by category or type.

Tobw profile image
Tobw

I daresay I'm not saying anything that many on here don't know already, but I thought I should give details of my experiences with A and E during what is now nearly ten years of AF to show a different side to things.

I've gone to A and E three times with my AF. The first one was just to get the "official" diagnosis that my GP and I strongly suspected I would.

On the other two occasions I went because I'd had a very high blood pressure reading a few days before the episode the first time and then, second time, I had a pain in my left shoulder and arm. Both times I was thoroughly checked, but released within hours, while still in AF.

My case is different from yours Sara because my heart rate while in AF is so much lower than yours - typically it tends to be in the 70 to 90 bpm range. I've been told by at least four medical professionals on different occasions that, as long as my bpm stays at the sort of levels they've always done in the past, I could go for months in AF without bothering to go to A and E - obviously if my heart rate was significantly higher or I had worse symptoms, I would be off to A and E like a shot, but, although my longest AF episode a few months ago lasted just over fifty hours, I at no time thought of going to hospital.

So, while I'm sure your GP was right when they said twenty four hours is far too long when the patient has a heart rate like yours was, I thought I should clarify that this does not apply to all cases of AF - if one doctor told me that I could go months when in AF without needing it looked at, I would have been very, very sceptical, but when four of them say the same thing on separate occasions, I think I can take the advice as reliable.

Actually, thinking about it, there was a fourth time when I went to A and E, but, in much the same way as with you, my heart reverted to normal just as I was parking my car at the hospital!

I struggle to follow this advice myself, so I know how hard it is, but staying as calm as you can will, almost certainly, make another episode less likely to occur.

Finally, best of luck to you and your partner in the future.

heather110 profile image
heather110 in reply to Tobw

As I understand it it is fast AF for a long time which can cause damage and that is what they worry about. This seems to agree with the advice you have been given too. Heather

booboo73 profile image
booboo73 in reply to heather110

Thank you Heather xx

PeterWh profile image
PeterWh in reply to heather110

I am in persistent AF and in addition have moderate to severe leakage at the tricuspid valve, minor leakage at the mitral valve, severely dilated left atria and other size differences.

Yes I was told fast AF is one of the key factors. Another is what your pre AF rate and BP were and current ones. Also whether you have paroxsymal AF or are in persistent AF. As other is any other heart conditions and then any other medical conditions. I only learnt some of this last week / the previous week. This is because I had been feeling unwell and also BP had dropped consistently over a week / 10 day period (I do self monitoring but had not been doing it daily but the bad trend would have been picked up more quickly with daily measurements. On BP it is also the difference between the diastolic and the systolic readings. In my case I was told that if BP dropped below 80 / 120 consistently to get checked, especially if other readings were out of the normal range for ME. BP had hit 70 / 90 or thereabouts. Also INR had shot up to 4.3. From a load of blood tests, etc GP decided that I had picked up some sort of internal infection (probably virus).

It was as a result of this additional knowledge (some was from before) that I said to BooBoo to ask her GP about the various factors. I believe that GP was right to say 24 hours was far too long. Even six may have been too long. In my case three would have been too long (which is what I waited when I was taken to A&E in June).

soupersue profile image
soupersue

I have nothing to add but wanted to send you love and hugs.

It is so scary especially if you are alone.

So love and hugs.

booboo73 profile image
booboo73 in reply to soupersue

Thank you Sue x

jeanjeannie50 profile image
jeanjeannie50

Right, I'm sending you a virtual cure! Here it comes, get ready. Shut your eyes for 5 seconds. Right, now you're cured and can get on with your life. It's ok I don't need thanks, it was my pleasure to help.

I feel a 160 heart rate is too high to put up with for 24hrs. Should it happen again

(which it wont cos I've just cured you) I'd suggest dialling the 111 number and asking their advice. x

booboo73 profile image
booboo73 in reply to jeanjeannie50

Haha Thank you so much for my cure!! x

Kaiser78 profile image
Kaiser78

Boo Boo I'm sending you spiritual healing thoughts.

Ps I broke down was and my af attack went back to nsr, so maybe this is the answer lol x

booboo73 profile image
booboo73 in reply to Kaiser78

Thank you Kaiser - Yes I shall make myself sob next time!! xx

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