Understanding AF and how to cope with it

[Parismay]

How do you cope with af attacks my gp just tells me the tablets take time to work it has now been 12 weeks since my stroke and10 weeks since being diagnosed with AF but the side effects are still bad and I get this feeling of every thing standing still and I feel as if I'm going to pass out my heart rate goes down to 41 then jumps up to 70s have asked him if this is AF attack but he does not seem to know can any one tell me what they experience when having a attack this happens every couple of weeks

[BobD Volunteer]

The heart rate you mention is very low for AF and may well be tablet induced although you do not mention what drugs you take. If your GP is treating you then ask to see specialist. Another thing you need to do is arrange with your doctor to be able to go for an ECG whenever you have this rhythm so that it can be diagnosed . Right now you are fishing in the dark.

[Parismay in reply to BobD]

Ian on edoxoban 60mg bisoprilol 1.25mg and amidolapine5mg every day

[BobD Volunteer in reply to Parismay]

Edoxaban is anti-coaguolant, bisoprolol is to slow your heart but this is a very low dose and amlodopine ( think you mean) is for blood pressure. I am not medically trained but don't see why any of these should make you feel the way you do so please go back to your doctor and explain. Sounds as if your GP is not too well up on things so maybe ask to see a specialist. Do get that ECG done though as it could explain something.

[Parismay in reply to BobD]

Thanks I will do that

[Maggimunro in reply to BobD]

Couldn't agree more with you Bob. See an EP.

[Parismay]

I was booked in to have a heart monitor but the stroke nurse who I only saw once cancelled it as she said they know what wrong with me I do not see any one only have to keep phone my GP

[jeanjeannie50]

A couple of times a year I get the feeling I'm going to pass out and time does appear to stand still then. It makes me feel slightly dizzy and then it's like a blackness descends, just when I feel I'm at the point of passing out, back I come and all is well again. I must admit I'm concentrating so much on not passing out and the episode is so brief that it's never occurred to me to take my pulse.

Jean

[Parismay in reply to jeanjeannie50]

Well I am new to all this it does frighten me at times so I thought well if this a AF attack my heart rate going low then jumping up may be what causes it

[jeanjeannie50 in reply to Parismay]

I can totally understand your fear, especially after having a stroke. I would let your GP know what is happening and ask him to explain to you why you didn't need to have the heart monitor fitted.

[Parismay in reply to jeanjeannie50]

Yes I will because I feel as if I am in the dark I am 78 years old and have never been in hospital or taken any medication that's what is so upsetting I had four boys and Evan had them at home I would not Evan take paracetamol

[opal11uk in reply to Parismay]

The worst part of any condition is not knowing about it, its frightening at times and you need to be able to discuss it and fobbing you off on the GP is not the answer. Even oldies like us have rights and you need to be reassured that you are safe with your condition so please demand to be referred to a specialist and don't give up until you have your answers, make notes if you have to and take them with you to an appointment, I do this now all the time so I don't forget anything, get them to read the notes and then discuss your problems with them, they will retain those notes on your file so gives a history. It is wrong to leave you in no mans land like this. As for the stroke, I had one too in 2000 and pleased to say still here and doing well, recovery for me was approximately 6 months so it does take time and ofcourse the more you are affected from the stroke the longer it will take. My stroke was because of A/F. Try not to worry and get upset because that only makes matters worse, be positive and do something about it as that will make you feel better and in control. Keep us all posted and good luck x

[Parismay in reply to opal11uk]

Thank you all so much for your reply it's good to know someone out there understands I don't feel so alone and you guys understand my fears I am going to have another go at my GP and tell him I want some answers will keep you all updated

[opal11uk in reply to Parismay]

Excellent, thats the spirit, look forward to hearing some positive news from you soon. As your stroke was only 3 months ago are you not due for a check up sometime soon, with a stroke or cardio specialist?

[Parismay in reply to opal11uk]

Know went up to stroke clinic 5 weeks after stroke she said she was discharging me all she did was take my blood pressure and tell me I should not be taking bisoprilol and cancelled my heart monitor appointment said they know what's wrong with me so I don't need it have had know check ups and nothing from any one this is why you guys are my only communication and I am so glad of any information you can give me

[opal11uk in reply to Parismay]

Ok then stick to plan A - first the GP with I would like a referral please to see a cardiologist, trouble is this won't be immediate but at least if you know you are getting the appointment its something to aim for, then sit and write your notes, do it on a daily basis as and when things happen and at the end of the notes ask the question 'what can be done to improve my condition' or words to that effect, let them know that this is not working for you. If your condition deteriorates in any way then call 111 or an ambulance, anything to do with heart/stroke is dealt with as an emergency and the service is there for you to use so do not be afraid to use it, if you go into hospital then your condition can be assessed and monitored. Good luck and keep us posted, this is a great group who will do their best to support you so you don't feel quite so alone. Don't forget to read the articles I posted from Guys Hospital, they are very informative.

[Hidden in reply to Parismay]

That is not good enough. With a separate illness I was told "we don't know what's wrong with you and we are running out of drugs to treat it."

I also post in the Different Strokes forum and I recommend the Stroke 2016 Guidelines published by the Royal College of Physicians to all new stroke survivors. There are two publications, one for clinicians and one for patients and carers. The patients and carers version can be read or downloaded at strokeaudit.org/Guideline/P...

Come back and chat when you need to.

John

[Parismay]

Yes I have been told that but there has been know follow up only told to go to my GP with any issues I have

[Rellim296 in reply to Parismay]

AF can be a fickle thing and everybody is different. Yes, you have a diagnosis, but it would be worth getting a recording of the standing still sensation. You might get this on a 7 day ECG, but that may not be long enough. A fixed monitor can be a very itchy experience too, so see if your GP can loan you a pocket ECG monitor for a while so that you are able to use it to take a reading when you feel it happening.

You can buy a device called Kardia which might be worth investigating.

AF can be very disturbing when you are new to it. Those of us who have had it for years find we know what to expect and how it will respond and it seems much less alarming.

[opal11uk]

This was the same with me, not directly after a stroke but after ablation when I was having 'whiteouts' a hotness coming over from toes to head, always upwards, and my cardio said these were pre passing out symptoms, heart rate was very low (about. 33) and heart not regaining rhythm for several seconds and severe breathlessness so I was fitted with a pacemaker and take Bisoporal and Disopyramide, two years ago, and brilliant since. If your doctor 'doesn't seem to know' then you need the attention of a consultant cardiologist so asked to be referred right away and when you do see him ask about a pacemaker.

guysandstthomas.nhs.uk/our-...

take a look at this link too it might help you to understand A/F - this is from Guys Hospital in London.

[Hidden]

I have AF, I had a stroke a year ago and. I take Amlodipine. I found that if I became ill, particularly with a urinary tract infection, that my blood pressure would drop to say 98/68 and I would feel weak and sometimes I would pass out. I also didn't fair well on Apixaban and changed to Pradaxa (Dabigatran). You need to see an Electrophysiologist (EP) about your AF and a Consultant Neurologist about the follow up to your stroke. I found that the world was a bit confusing after the stroke and I suspect that you could be in a similar place.

[Parismay]

Yes was only told by GP today 4 months down line