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Am I doomed (feel free to adopt a shaky Scottish accent)?

scottishmuppet profile image
25 Replies

Dear all

Been diagnosed not on meds yet.  Appreciate it's very early days but.....!

I am newly 49 with a very young family and I am reading about AF being progressive and I feel like I'm already in a nightmare and well ..you get the picture I'm sure.

I live in fear of the day it becomes permanent.  

For those of you amazing people who have it all the time and still somehow manage to find the time and motivation to come online and help strangers first my eternal thanks and admiration and second a question - how do you manage?   Is there anything you can take or have done which makes you feel more comfortable?  A pacemaker?  Surely something?  I just feel that even if I only make it to 70 the disease has 21 years to gradually get worse so I'm pretty much in for it.  Happy days.

Ps this is my second login id as I kept.getting server error with my original login of Ahab.  Thank you 

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scottishmuppet
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25 Replies
wendicarro profile image
wendicarro

Arr bless you I was 47 when diagnosed with young   family,getting progressively. Worse,I'm now 50 and had a pacemaker 2014,had a few niggles but got my life back,stay positive is the key,feel free to ask anything,  take care, wendi x

GazzaD57 profile image
GazzaD57 in reply towendicarro

You become a pirate Wendy?

scottishmuppet profile image
scottishmuppet in reply towendicarro

Thank you Wendy it's appreciated.   Did you get the pacemaker because of a low hr?  My understanding such  as it is, is that the AF isn't cured by a pacemaker.  It is good to know there may be ways to get around the horrendous symptoms of AF if not the thing itself.   

wendicarro profile image
wendicarro in reply towendicarro

Hi ,Yes I did,and of course a pacemaker does not stop AF but as you rightly say it helps to alleviate those awful symptoms which can take over your life if you let them.

I was able to go back to work and run round after my kids again!

I never thought that was going to happen again in a hurry, just remember you will learn to cope and be able to get on with your life as before.

Be well,

Wendi x      

Perrylees profile image
Perrylees

Hi

People say that AF gets progressively worse & I suppose that might be true but it really isn't the end of the world!!

I was 48 when I woke up one morning with fast AF - first time ever and it never went away - it was persistent ( 24/7) from the first moment.  I went on the drugs which controlled my heart rate and blood , had a cardioversion which lasted 10 months, woke up again exactly the same in fast AF - back on the drugs and after another 8 months had an ablation.  That was 6 weeks ago - I'm now just on anticoagulants and starting to feel like my old self again.

Of course there have been some bad times - I've felt sad and depressed and Ill sometimes but AF is NOT that serious as long as you can control your heart rate and rhythm without too many side effects (!).  I'm the first to admit that sometimes it's difficult to keep it in proportion though.

At your age ( same as me) I would seriously consider a CV  or ablation.  Of course there is no guarantee with either but neither is THAT bad and ablation works for many people.  So far mine has worked really well and if I need another sometime in the future I think I would go for it .  Speak to your EP & get as much info as you can as everybody's situation is different.  Most of all though try not to let AF take over your life many people live with it and have perfectly normal lives.  I couldnt tolerate the drugs and also  felt I was too young to be  drugs for the rest of my life but it's all personal choice really. Just try not to let it take over ... 🙂

Ruth

BobD profile image
BobDVolunteer in reply toPerrylees

Nice positive post there Ruth.

Perrylees profile image
Perrylees in reply toBobD

Thanks Bob 

Easy to be positive when you are starting to feel normal again!  I've not always been so I can assure you but at least I can see light at the end of my particular tunnel now!

Ruth .

G'day Scottish Muppet,

Look, AF isn't always progressive. The problem is it is a condition which is different in different people ... it is literally pure mongrel !

I do suggest you get onto the Atrial Fibrillation Association website and suck up as much info as you can absorb. The only thing to fear about AF is the whole notion of fear itself. Knowledge is power, make no mistake.

You may find it useful to try (without obsessing about it) to see if you can identify what brought it on in the first place. Don't exclude a genetic predisposition to AF, nor stress, nor food or drinks, or leaving your cell phone switched on in your shirt pocket, or endurance sports/athletics.

Get yourself to an EP (again, refer to AFA website).

Also remember whatever brought it on in the first place, may not be the same as later triggers you may experience, in times ahead. I never really discovered what brought mine on, certainly family genetics comes into it, so does stress, but later triggers were food and a tad dysfunctional Vagus Nerve.

I wish you well.

John

Alan_G profile image
Alan_G in reply to

I agree. I've heard it is progressive, and I'm sure it is, the majority of the time, but I'm determined to be an exception. I know that alcohol was my main trigger, and now I've found that cold sugary drinks late at night can bring it on as well, which I gather points to the vagus nerve but you have to stay positive and believe you can beat it. I know a lot of people are cynical about supplements, but I'm looking into them because some DO WORK and I'm finding it's improving my positivity because I feel I'm being pro-active in looking at ways to cause the episode intervals to stay long. I don't expect a miracle cure from supplements, but if they extend the interval between episodes, then they're worth the effort. If you do a search on Supplements you'll find they've been talked about a lot in regard AF.

PeterWh profile image
PeterWh

Being a bit philosophical what will be will be. As my dad used to say you are at where you are at even though it may not be where you thought you would be. You have to move forwards and can only look back to learn / inform about moving forwards.

You need to read up on AF (and re-read) including AFA site and past posts.

You need to actively project manage things. 

You have lots of good advice above, I would just add that what has helped me is a determination to be healthier when I get AF under control (or not) than I was before.

 Action taken: Mg, CoQ10 & Fish Oil supplements (get brands recommended by a professional), drastically reduce gluten and sugar, brisk walk half an hour x2 per day, new hobbies, Mindfulness, prayer, improve personal relationships (incl my partner) and Green Therapy (in my case working overtime on my smallholding and many more smaller improvements but you get the picture. Good Luck.

Steve112 profile image
Steve112

We have all been where you are when diagnosed with AF..but we all need to remember AF is not a one size fits all...the drugs prescribed affect each and every one of of very differently. We all have very different experiences with our GP's/Cardiologist 's etc..we all make our own choices if you choose the route of worrying yourself to a point where you are frightened to do anything just in case something may happen then what's the point in that....eating well Not smoking drinking in moderation exercising and carrying on as normal is how I choose to live my life with AF..having a positive attitude to me is the most important thing with any illness/disability.....there is a wealth of information available out there regarding AF...please don't left AF prevent you from living a full and active life you owe it to those around you and more importantly yourself....

Rellim296 profile image
Rellim296

I was in my early forties with small children when my heart first started to go off the rails.  It didn't progress very quickly and I'll be seventy at the end of this year.  I've lived much longer, with my dicky ticker, than the rest of my family, who died before their hearts ever did anything silly.  I'm currently in a much better position than I was three years ago when things were not going the way I wanted them to go. 

I think AF is hard at the beginning because none of us want to have what seems to be a scary heart problem, but we get to know our own brand of AF.  We can get it improved and controlled, learn what to do with it and how to give it the elbow and get on with life, and then it doesn't seem as bad as it did at first.

I think it's a condition for which someone should write "Don't panic!" a la Corporal Jones in large, friendly letters all over the website... Everyone's given  you all the great advice. It's a very mongrel condition, I've had it since the day of the Royal Wedding, still have to talk to William and Kate about that, and it's not progressed much. I get it about twice a year. I'm trying to lead a healthier lifestyle to reduce that number and the length of attacks. And I'll be darned if I'll let it live my life for me.

You'll find there's loads of information out there, the AFA website is a treasure trove. Just treat your body with respect and press the doctors for action if you need it. There are plenty of over-70s whizzing around out there with AF! Take care and be well.

Walison profile image
Walison

Hi I know and understand how you feel. I had my first fast AF episode over two years ago. After a couple more nasty episodes and cardioversions I thought that's it- I am disabled by this and my life has changed forever. It would have been easy for me to sink into this train of thought forever. The anxiety and fear was immense. But this website with its great support has helped me to realise it really isn't the end of the world, and my life is pretty good really. I had an ablation last Nov, and apart from some palpitations I'm ok. I am now getting on with my life having made some stress reducing changes, I am used to taking my medication and trying to forget about it all. As time has gone on I really believe that the emotional /  mental approach is a crucial part of overcoming AF.Keep positive and know you will be ok. Help is always at hand. Making little changes to keep life simple helps - don't overstretch yourself, don't overthink anything, don't let it take over. You can choose whether to worry about it or not, honest! I wish you well, keep reading the posts!

dmac4646 profile image
dmac4646 in reply toWalison

agree completely there are many other things that are much worse to deal with.

maxred1 profile image
maxred1 in reply toWalison

Life style changes, adopt and accept the medication, relax into it, and look after yourself. Oh, and keep up to date with Healthunlocked....

dmac4646 profile image
dmac4646

it doesnt always get worse - I have had it from 2005 (54) - it was about 4/6 times a year usually on reflection after red wine - I did nothing about it until 2010 when episodes were a bit worse and was put on Aspirin and Pill in the Pocket Flecanaide - this topped the episodes quicker but the Cardio then suggested I go on Flecanaide (no other heart problems ) 100mg a day and have had on average 2 episodes a year usually when ill with cold etc - I am now 65 still work 5 days , walk 10 miles a day and at this level Flec does the trick - it wont work for everyone and it might not for me one day but I am sure as hell not worrying about it - in fact less so now that I am on Apixiban - I dont drink red wine any more but have a beer when out with no ill effects. BUT everyone is different and I am glad I saw the cardio and got the advice I did.

cat55 profile image
cat55

Hi, I was 46 when I had my first episode of AF. I consider myself to be very lucky in that over the last 14 years I have had at the most 10 episodes. I stopped all medication(I am not advocating this is the right thing to do for everyone) and for many years took nothing, I am now on Warfarin (trying to get this changed to a NOAC  but this is proving harder than I anticipated) and I take a pill in pocket which has lessened the length of time I am in AF. i am aware it may well progress but I refuse to let it rule my life. I am a very anxious sort but I am trying with CBT to curb this. Read as much as you can but don't weary yourself with negative thoughts, we all had them at first, also everyone here is so supportive. Best wishes as you learn more about it and learn to live alongside it. Kath

Eliza2 profile image
Eliza2

It certainly does knock you over, I know.  Afib came at me one night out if a deep sleep....wham never stopped until I had an ablation.  I could not to,erase the drugs and the ablation has gotten my life back.  You are so young consider ablation.  It is amazing how effective it can be and has been for me.  I was totally terrified of it all.  Just find a good EP that you know is good and can trust. Good luck......better days are to come.

scottishmuppet profile image
scottishmuppet

Hi everyone thank you SO MUCH for taking the time to reply and share some of your experiences with me.

Armed with a lot of information garnered here and on Afib website I think I surprised my cardiologist with my assertiveness 😊.

I declined bisoprolol due to the regularly quoted side effects of fatigue and depression.  I was also very clear in my desire for an NOAC as I have family history of stroke and brain bleeds and could not tolerate the worry.  

He has therefore prescribed verapamil and  riveroxaban.   Don't know doses yet as he's writing to GP.  

I feel generally happy that I got my point across.  I am not a candidate for Pip as have so many short AF episodes a day.   I am however ideal candidate for ablation so we agreed would consider that in due course.

Interestingly he was quite adamant that lifestyle changes of better diet weight loss and exercise , while being of general benefit, would not influence my AF which I remain sceptical about.   

I think I'm feeling better already.  Thanks again everyone. Be healthy 

PeterWh profile image
PeterWh in reply toscottishmuppet

Brilliant result then!!!  A little bit supra sing re doses as usually EPs and cardiologists are more knowledgeable than GPs. There are different types of AF and different triggers. He may be right overall but I do think that changing lifestyles will have some influence and affect. I say this from my experience. I am in persistent AF. Certain things do make the AF worse and more active. 

scottishmuppet profile image
scottishmuppet

I'm with you Peter - I feel certain I can help myself with more than just drugs.   You're quite right the cardioloist is setting doses, I just can't remember what he said and won't see my script till GP gives me it.  It's a miracle I remembered the drugs names as I was mid AF episode all through the appointment 😆

PeterWh profile image
PeterWh in reply toscottishmuppet

Murphy's law strikes again!!!  Some things you won't really know as to whether cutting them out makes a difference or not. However my view is to just go for it. Somethings like completely cutting out processed foods is a no brainer. Also significantly reducing salt and sugar. Other things such as healthier foods the same as well as known triggers (you / typical people). Some things I do have now  and again as a small portion as a treat.

Samuel68 profile image
Samuel68

Im 49 and new to this also. I hate it as im sure everyone does. If i find out any new info ill be posting, Hang in there it has to be something we can live with and research is always ongoing, well i hope it is anyway :)

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