I have suffered atrial fib since 2004. I'm now 40 years old and I'm having a hard time dealing will all of this. There isn't many people I can talk to about this because I live in such a rural area. I also do not get out much.
Hello: I have suffered atrial fib since... - Atrial Fibrillati...
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Rubyladyemerald
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•
Welcome to the forum. You can chat here in the knowledge that we've have the same ups and downs of AF and, a variety of experiences.
John
Hiya, I feel for you, but this is the place to come. I don't always think it's helpful talking to friends or family anyway, my mum (was) almost dismissive it was only after my recent episodes when I exploded at her for being so uncompassionate that I realised she needed me to have a leg missing or two heads for her to know that AF is real and a real head worry especially when you're so young. I too am a younger AFer and recently been having a hard time dealing with it. For me just typing out a post even if I don't click submit is a help.
Chin up they're all good helpful people in here xx
Forgive me if I giggle about your mum. My husband often gets frustrated when I say I'm tired or I'm cranky. The last two months, however, he has seen just how bad AF can be. I have been stuck on the couch because I haven't the strength to breath. My mum all she can say is she doesn't understand and then plaques me with a billion questions she isn't going to understand.
Just picked up on this, if you are getting to the stage where you are out of breath, I was the same before I had a pacemaker two years ago, thought the end was nigh but that has changed everything, it might be an idea to ask your GP/Cardiologist if this would be the best thing for you. I now lead a near normal life combining the Pacemaker with drugs, would have preferred to lose the drugs but my condition needed both but boy has it been a Godsend.
I had both drugs and an ICD. They worked really well for me until two months ago. The drugs quit working. I am now fully paced. When my doc told me what he had to do I cried. He and I both know that being fully paced is not the best answer at my age but its the only answer. Besides it will keep me from being shocked so much. The fear of being shocked for AF has a very nasty grip on me. After all in the 13 years I have had my ICD only two shocks were for VF because of AF. I have been shocked nearly 30 times. My doc calls me his little trouble patient in such a loving way. Hopefully I won't cause him anymore stress and I can get back to being somewhat normal again soon. I really miss getting out and taking a drive to anyplace.
You really have been through the mill, I hope the future is brighter for you xx
• in reply toRubyladyemerald
I'm paced 99% of time according to last check. Don't mind as long as can function
Rubyladyemerald• in reply to
Do you have symptoms that make things hard?
• in reply toopal11uk
Same here
I feel for you, not long diagnosed and I'm nearly 50 (though I did feel younger until all this started now I feel 104 some days). Have to say I've learned a lot from everyone 😊 Welcome!
I was 28 when I went into cardiac arrest. My husband saved my life. It took nearly two years to get me somewhat normal. I had gone through four defibrillators, three ablation, and a few meds. I recently had two more ablation and one med change. The first ablation didn't take this time and I didn't tolerate the new meds. So I had an AV node ablation. I feel a liite better but I still have the fear of being shocked. I'm glad I found this group. I don't feel so alone now. Thank you.
Looks like you have had a rough time of it Ruby. After my ablation didn't work I returned to the hospital to have cardio inversion because my heart had been going out of sinus for longer than was safe, I was prepared by the nurses to have the treatment, got on to the table crying my eyes out and guess what, the wretched thing slipped back into sinus and I didn't have to have the inversion, such is the unpredictability of this condition grrrrrrr
Hi, I was diagnosed last year, but have recently struggled with it. My family doesn't really understand what I experience and I felt I had no one to turn/talk to, then I found this site and it has helped me. I feel I have like minded people to talk to and ask questions, who understand and experience the same thing. I hope you find the site helpful and you are not alone.
Shelly
It's nice to meet you.
Hi and welcome to the forum. You have certainly come to the right place for help and advice.
Reading your previous post I can see that you've had quite a rough time. We, on this forum, understand just what its like to have AF come into your life and turn it upside down. Lots of members have experienced that awful feeling when you have a particularly bad attack of AF and wonder is this the end?
Don't worry about not getting out if you don't feel up to it, we as forum members will always be here for you. Feel comforted that you have people on your side now who truly know how scary this condition can be. Also, as you've had AF for such a long time you may eventually be able to give reassurance and support to others who have been newly diagnosed.
Big hug and welcome to the AF family.
Jean
Thank you very much. AF has been a part of my life since 2004. Just recently I have had a hard time dealing with it. I spent seven years without an attack. Now I'm depressed and upset because my independence is gone and I am fully paced. I would love to have a good cry but I'm paced so high I'm afraid I will pass out or go into VF.
When I feel a little sad about having this condition (which I sometimes do) I tell myself there are a lot of worse things I could have had. I have all my limbs, my sight and I'm sure people with cancer, Parkinsons etc would gladly change their conditions with mine. How lucky we are to live in our country where we have good medical care. I have a roof over my head, lots of rooms to go in (not just one as some have) plenty to eat ( I have to watch that I don't grow too fat)and a nice clean bed at night. I have so much more than those hungry people living in rough shacks in poor countries. So we have AF! Lets be grateful that's all we have to put up with.
PS - Can you please remind me of all this if I ever say I'm feeling down.
Another big healing hug.
Jean
I can remind you of that. Hugz!
I was a bit the other way hubby wrapped me in cotton wool. My consultant told him after 4 yrs of treatments and ops it was time for me to fly. I have indeed and meds and pacemaker I now feel ok. Nothing is right or normal but am coping better
Rubyladyemerald• in reply to
What are some of the things you do to cope? I'm home alone most all the time and I am having a very hard time being alone now. I do like to quilt and talk to my cats (all 33 of them) but it's not the same.
• in reply toRubyladyemerald
Takes time but once we realise AF won't kill us becomes easier. That and reading to be informed help too.
Animals are the best listeners. Fact!
Lol. Mine love to snuggle and are more of a pain than a listener. But I love them. Although I do have to find homes for some of them. I just have too many to care for.
opal11uk• in reply to
The Pacemaker has been my saviour too Frills, wish I had it years ago x
Do you have symptoms with your AF even though you have a pacemaker and do you have high anxiety from the symptoms?
The Pacemaker on its own was not the answer for me, I had to maintain the Disopyramide and Bisoporal was added at 2.5mg this still didn't control it so drugs were increased so now its the Pacemaker, Disopyramide x 2 daily and 5mg of Bisoporal and this combination has worked for 2 years no problem, of course it may re-emerge because thats the nature of the animal but at the moment life is good. I had 3 mini strokes TIA's February/May and earlier this month and the stroke doc has swopped the Warfarin for Pradaxa which he says is now proven to be better for A/F sufferes as it is A/F specific. I was anxious about changing but have taken his advice and the advice of others, including my scientist grandson who knows about drugs because he makes them lol, he works in nuclear medicine, so have taken my first one today so we wait and see lol. So, the answer to your question no, no more symptoms at present and the former high anxiety of expecting A/F and during attacks has now gone. I am retired so no longer have the high stress of work.
Before I became fully paced I spent 9 years on Rythmol SR at 325mg twice a day with Metoprolol 12.5mg twice a day. That was my wonder drugs and did really well. Then in April I had a spell of AF severe enough for me to have VF. After that I had a fourth ablation and a med change to Sotalol 80mg and Metoprolol to 25mg twice a day. I thought for sure I was dying a slow death on my couch. Just this past Tuesday I went into a nice low AF all day and my doc had enough. So far being fully paced isn't so bad. I do feel my heart jump a little if I do too much but its not so scary. I still panic a little but not like I once did. I have not worked since 2004. I do miss working but I don't miss working. I think i Just miss being around others and being social.
Hi Ruby,
A/F is a lonely condition and because it is our heart that is affected it can also be very frightening and, as with stress, fear aggravates the condition. I spent a lot of my time researching this condition I also kept a diary of events and how long each lasted (gave me something to do) and I must have tried every drug on the market, which gave relief for short periods of time. It certainly does help to talk about it so what has the medical profession advised for you, what treatments have you had to date?
Well....Since this started I was on Rythmol and had three ablation. I did really well for seven years. Back in April I had a single spell of VF and a week later a spell of AF. In May I got another ablation and they put me on Sotalol. That didnt work so well. I stayed very tired and drained. Just this past Wednesday I ended up with one final ablation. The zapped the AV node. The good news is I'm off all the meds except xaralto. I still get panic attacks when I'm up and moving because I'm paced at 90 beats for now. I get winded and headaches. I'm just sad because being fully paced will weake my heart over time and I'm finally afraid I'm going to pass before I get old.
I can understand what you are saying Ruby but as I said earlier, I am 73 years old and didn't honestly think I'd make it. With the pacemaker I am permanently paced at 60 revs which is due to my age and for me the fear has gone because most days I am stable and in sinus - this condition is not going to get the better of me and you have to think the same, we have been through too much.
I came to this site only by chance and it has given me back my confidence. I have had PAF for 20 years. I have a pacemaker and solatol. Never had an ablation. But maybe offered it in the future. I lived with this complaint for 15 years before I was diagnosed. Nobody believed me when I felt unwell and I lived in constant fear. I too live alone and in my good periods I try to follow pursuits such as reading ,art work etc. But for so many years I felt so alone. I owe this sight so much. You will too. So welcome and keep positive.
The positive part is hard for me to find right now. I love my independence and for the last few months I have relied on someone else and that makes me feel really bad. But I do see the positive in the long run I'm just sad right now because it doesn't feel the same with my heart only half working by mechanical means. It sort of feels like I have no heart at all now. I sort of wish I still had a broken heart to fight with. It gave me something to...........contend with and a reason to keep looking for a fix. Now I don't have that.
You seem to me to be a bit depressed. Can you talk to someone about it? I do sympathise with you. I only wish I could be of some help. How do you cope with 33 cats? They must take up a lot of your time. Try to keep on going . It will be better when you receive some good treatment. I remember when I had my first treatment I thought good I am going to be better now. It did not happen and only now do I actually realise that this is all there is. Treat every day as it comes and say to yourself 'I am still here'.
Lol I cope with my cats by feeding them, keeping the litter clean and just letting them be them. They are good during the day since they mostly sleep. I keep them out of the bedroom at night so I can sleep.
I am a little depressed because this last surgery has a bleak out come But Then again it does give me a little more time to fill my bucket list. I just can't grasp the fact that my condition has gotten so bad that the only treatment now is to be fully paced. I just feel like I lost the war on AF. But talking here has helped tremendously. I don't feel so alone.
I can completely understand how you feel as I think I would have some of the same thoughts as you if I were to be in your position which I may well be one day in the future. My nature is to face and deal with worse case scenarios before they become reality. My husband calls it " looking on the black side" but it isnt like that. It sounds as though you didnt have time or were not able to deal with the emotional aspect of being pacemaker dependent but the good news is that now you have found this site, I think you will be able to start the process of acceptance. Others who have had this procedure will be able to reassure you and help you deal with some of your concerns.
I will be very interested to follow your progress.
Take care of yourself and your cats!
X
Welcome to the Forum, Its good to talk to people who know what you are going through and everyone here are so friendly and helpful.
Just want to send you best wishes . I hope things settle down for you and your anxiety lessens. Dealing with heart/arrhythmia is in my opinion especially difficult. Thinking of you 🌺
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