Help/Advice needed please..: Hi My Mum who... - AF Association

AF Association

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Help/Advice needed please..

Parco
Parco

Hi

My Mum who is nearly 63 was diagnosed with PAF in April and she's been really struggling with it since. Possibly her biggest challenge is she suffers from severe anxiety - health anxiety really and is petrified she's going to die. She isn't on any blood thinners at all which concerns me but her CHADS score was 0....anyway, they put her on sotalol (apologies if these are misspelt) and they upped the dosage as the episodes were becoming more frequent - but they made her feel utterly dreadful. They then put her Bisoprolol 1.25mg but have put it up to 2.5mg now - she's been admitted to A&E three times in the last 3 weeks with a HR of around 140-160 bpm. She was admitted yesterday and it seems the Bisoprolol are making her feel dreadful too and very tired. Her HR was 150 and they kept an eye on her, but despite further meds it's not really come down and they kept her in last night. I understand the docs are seeing her again this morning and will be looking at the situation. I asked 'is she in danger' and there seemed to be a reluctant 'no'....now I'm very worried about her - is this likely to damage her heart a lot? What are her likely options? What else could they do? Her anxiety and worry isn't helping and is making it harder to treat it seems, fighting the meds she 's on almost.

Any support, personal experience etc. would be greatly appreciated by my fellow sufferers and kind members.

Jamie

16 Replies

I can understand your mothers tiredness and eventually had to come off beta blokers. Maybe she would be more comfortable knowing that others have this condition and are still here( I'm 81). After a long journey I'm now on flecainide and asprin , excercise and deep breathing . Perhaps they'll advise a cardioversion . Don't worry too much as being calm really does help. Other people on this forum will give you support and give advice. Your mother is not alone and more is being discovered all the time. Terjo

Many Thanks....I tell her she is young and live a long time but she just worries, worries, worries

mumknowsbest
mumknowsbestVolunteer

Hi I am 65 and have had AF for 12 years or so. It is scary but as they always say it will not kill you. I thought you got a Chads score of 1 just for being female, but I might have got that wrong. Beta blockers also made me feel aweful and I eventually came off them which was a great improvement. Sound like your mum should be referred to an electro physiologist as they are the arrhythmia specialists. There is a list of them on the main AFA site as well as lots of other information leaflets that you might find useful.

Regards

Eileenp

Hi Jamie,

I understand all that your mum and you are going through. I have been there, believe me. It is unbelievably frightening, unlike anything we normally experience in life, you feel completely taken over by it. Her anxiety will only add to her distress and I feel for her as I have anxiety issues too therefore totally understand. Believe me it is terrifying.

However she will come through it although I bet she thinks she wont, we have all been there, trust me. There are good treatment options which are improving all the time. In itself AF is not life threatening (feels like it though at the time!) Vast numbers of people have AF although you tend not to hear of it until you or someone you know has it. ** Stroke risk is the bigger issue.**

She is in the best place right now.

Some practical things to do:

Ask loads of questions from the doctors and ensure they are clear and concise with their answers.

Check out treatment options (once she has had all the relevant tests) ie Rate Control drugs; Rhythm Control drugs, Ablation procedure.

Ensure she is referred to a Cardiologist or an Electro Physiologist (a heart doc who specialises in heart rhythm problems) if she is not on a cardiology ward currently (she may still be in A&E).

Ensure she is given relevant tests - 24hr heart monitor, Echo, treadmill. (They will have done a chest xray and blood work).

Read all you can on AF - look on AF Association website, there are lots of fact sheets.

* *Ask about anticoagulation to decrease stroke risk (a major risk factor with AF) even though you say she has a CHADS score of 0** - this conversation is crucial.

Consider speaking to someone on the AFA 24 hour helpline they will give you support and answer your questions tel: - 044 1789 451 837

Ask away here anytime, you are among friends.

Check if there are any support groups for AF at the hospital, we have a fab group where I live. She will need emotional support ongoing until she regains her confidence.

Give her our best wishes and let her know we are thinking of you both and that everyone here has been where she is right now and are still here to tell the tale.!. Let us know how things are going forward.

Hope this helps.

Regards

Dee.

Parco
Parco in reply to meadfoot

Dee

Simply - Thanks. Such a lovely and personal post. Will show her this when I visit her tonight. Everyone who has replied thanks - really appreciate it - she doesn't have access to the internet so I have to print things and show her comments - these are sure to make her feel better.

:)

Will keep you posted - fingers crossed!

Hi Jamie, I am also a newbee to AF.......I have found this group of lovely people such a help. I found ever question I wanted to ask, was answered here. There is always someone with the same problem as you, who will kindly send in an answer.... Try not to worry about your mum, to much, she will be fine, once they sort out the drugs that help her..... I know how frighting it is, when you first suffer AF. Just take care of her, and been there, when she wants to talk about her AF. Regards Carol

Hidden
Hidden

Hi Jamie

I'm really moved by your blog and just want to reassure both you and your Mum. I can understand her worries but can only pass on to her what has been told to me over the past 10 years or so - AF is more of a nuisance than anything to be scared about. The biggest risk is that of stroke which is why they give Warfarin. It can feel dreadful and most of the drugs have nasty side effects which can seem even worse. I don't know where you are but it doesn't sound like the UK. There are lots of other methods of treating it but unfortunately they don't work for everybody. There's cardioversion, ablation and even a pacemaker. Keep asking and you never know. Good luck to both of you

Dot

Hi Jamie,

I am 69 and also suffer from anxiety though I try not to let it stop me from doing anything. It manifests as physical symptoms such as chest pains ( various) nausea, tingling and bloat,

This sounds a bit strange but when I flipped into AF the first time it was not half as scary as all the weird and wonderful symptoms I got/get from anxiety. It is very easy to get into the mind set of "oh good grief, am I going to have an episode at an inconvenient time?".

I do relaxation and mindfulness exercises - not as often as I should though and they do help.

Your Ma is very lucky to have a son who is trying to help. It is scary to start with but as someone else has said there are lots of different approaches to try. Maybe write down all the questions you have for the doctors as long as they are things your Mum would be happy to hear the answers to - or compile a list between you.

Best wishes to you and your Mum.

Hi Jamie,

Firstly let me say what a warm and caring person you appear to be. Your experience with your Mum is really similar to the situation for myself and my son Adam. I was diagnosed with PAF five weeks ago and am just starting to deal with my anxiety, which was marginally worse than the diagnosis itself. Now I've never been anxious about much at all and this had a real effect on my son. So I'm working each day to find strategies such as deep breathing and meditation to keep my anxiety at bay and this is important because ianxiety makes the situation worse. Adam rings regularly to check how I'm doing.

The early days after diagnosis can be difficult for everyone in the family but things will gradually improve as they are for us. When I was taken into A&E I have never been so scared , I really thought my time had come. But as others have already mentioned, AF isn't life-threatening.

I don't like taking medication but if it avoids more serious outcomes then it's a no brainer. Different meds suit different people and sorting them out can take a while!

Encourage your Mum to stay positive, Jamie!

All the best to both of you.

Hi Jamie,

Having PAF isn’t the easiest condition, I’ve had it for 2 years + I’m on a waiting list for ablation, from my experience I now give in to it when I have an episode, what I mean is I accept that I have little control over it, But I do manage it, when I have an attack I go to bed or get off my feet by sitting or lay down etc. this in turn gets my heart rate down and is less stress on my heart, I wear a polar sports watch and chest strap which gives me a reading of my heart rate, unmanaged it can hit 220+, by simply lying in bed I can get it between 70- 100 BMP, I endure the episode anything from 8- 24 hours, It goes of its own accord, just like a common cold, just takes a bit of time unfortunately, yes it’s a real pain in the butt, but that’s how it is a present, it took a while for me to accept that I have to take regular medication, Verapamil 120mg x 2 pd, it doesn’t stop PAF but I’m sure it helps

Good Morning Parco,

You sound very much like my son ,who is caring also my hubby who is a gem .

I was diagnosed earlier this year with paf ,and just flew into panic ,thinking my heart was done for and all sorts of bad things were going to happen,I am 69 ,and have had both hips replaced and now this ,but as the weeks have passed by ,I study this site I read ,I have the readers digest book all about the heart ,.and feel I am getting to know my own body .I take bisoprolol 5mg x 1daily and warfarin 4mg x 1 daily ,but the best medication i have come up with is trying to control worrying ,it just doesnt solve anything at all ,possibly makes it worse ',easy to say and hard 'to do but it does work ,worry never changes anything ,I put on some nice music or pick up a nice book , That always works Do hope your Mom gets sorted out soon and can be at ease with her condition and carry on enjoying her life ,God Bless you Both Parco poppystorey

Hi Jamie.

I have just joined this forum and have already had fab support from everyone . I know exactly Ihow your mum feels. I have had PAF for about 12 years. Undiagnosed for 10 ( my own fault )

I then had 3 TIAs which led to a diagnoses and daily doses of warfarin. My overriding emotion was fear as I thought I was going to die! However I now feel much better as I feel I have taken control of my own health. It has helped me to know that I am doing everything I can to help myself now. Although that anxiety never totally goes away I can honestly say that most of the time I now just get on with my life. When your mum gets out of hospital it may help her to chat on this forum . Hope all goes well.

Dedeottie

I'd like to thank everyone for their kind words of support and encouragement for my Mum, I read some of these out to her in hospital last night and she was so happy. I'm seeing her again tonight so will update her.

Thank you all - you're all very kind.

Jamie.

Hi Jamie,

I am 47 now and was diagnosed with PAF in 2007. I can understand your Mother's point of view. A couple of strategies I developed to cope with episodes were firstly distraction. As another poster has already mentioned, the attacks seem to go away on their own. I found going to sleep or getting engrosed in a film, would take my mind off it and it just went away, the longer you spent worrying about it the longer the attack lasted. Secondly the doctors taught me to cough when ever I felt my heart rate going out of control. This seemed to 'shock' my heart back to normal. Tell her not to worry about not being on anti-clotting meds too much, I wasn't on any either. And mostly, tell your Mum there is hope. The reason I talk about my AF in past tense is because after two ablation procedures, I have been free of AF for over 4 years! Good luck to you and your Mum.

Samantha

Hi all

Good news on the whole, my Mum is hoping to come out of hospital today as her HR is settled around 65 and she's been put on Flecinaide which seems to help - getting the right meds sorted (fingers crossed) will hopefully help her. Her ECG's have been good so that's positive too.

She now has to learn to live with it more, RELAX and know the signs and understand her 'plan' - when to act, how to act and when is the right time (god forbid) to call 999. She's been so humbled by all the lovely comments and she's hoping to get online soon.

Thanks again guys, onwards and upwards hopefully

Jamie :)

Geordielass
Geordielass in reply to Parco

Jamie, don't hesitate to ring 999. Both the ambulance people and the A&E doctors told me that I HAD to do this whenever I got an AF attack again. (I had been in the habit of doing what others here recommend, ie going to bed, or trying to ignore the symptoms) The stroke risk during an attack is still there, even if you are on warfarin or some other anticoagulant. Also, the longer an attack lasts, the more strain is put on the heart muscle. During the attack, oxygen isn't reaching the whole of the body properly. (I find my brain doesn't function well during an attack; my memory is affected, and I find it difficult to answer questions)

Having said all those scary things, I have to reassure you and your Mum that, like me, she isn't going to die! I was diagnosed at age 64, three years ago, but had had AF for about 15 years before that without realising what was wrong. The symptoms got worse and worse and the attacks started to last for days before I had my first ablation in 2011. I'm about to have my third procedure and looking forward to being much fitter after that! Back to the gym, hurray!!!

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