Feel so beaten & deflated, following years of AF, 2 disastrous ablations, became really ill in March with AF again & had 2 cardioversions since April (the second one was June!) Having done fantastic in losing 2 stone, not being able to get upstairs to walking 3 miles thought I’d cracked it - early hours of this morning it’s back!!! just feel so down and miserable together with other serious worries at home and concern for my job as been on sick since March so worried sick pay will cease ……….. I know there are many on here who are in a worse position but when it feels relentless where do you draw more energy from. I know that my next option is another ablation, the last two had horrific complications so I’m non too keen. Sorry to dampen your day folks just needed to whinge somewhat
Feeling Beaten: Feel so beaten... - Atrial Fibrillati...
Feeling Beaten
What you are telling us is not whingeing. It isnatural to be deeply disappointed but this episode may be different after the work you've put in to shed pounds and get fit.Do you revert to sinus rhythm sometimes? This may be that time!
Whether others are worse off has nothing to do with how you are feeling, it is you who need to be supported today. You would do the same for others.
Tomorrow will be different - not better nor worse but different.
You WILL see the benefits of your hard work and lifestyle changes.
Of course you will worry about another ablation but IF you need to go down that route I'm sure they will be extra careful.
Thank you bagrat, sometimes you just need someone to say those words don’t you! Mine turned to persistant and HR is back to 130/140 again having been 54-80, my chest inside feels like I’m riding over cobbles shaking about in there!yes we all support each other on hear which is great thank you again😉
Sorry to hear you are feeling this way. Please feel free to contact our Patient Services Team if you would like to talk things through with someone info@afa.org.uk, we are able to offer support, advice and guidance for you if you'd like it.
Thank you that’s great I wasn’t aware of that x
Is this the correct number HELPLINE 01789 867 502 as info@afa.org.uk didn’t take me to a specific site when I put it into google-maybe I did something wrong tia
hiJust reply to the REPLY under Afibflipper.
Think positive.
It took 1 year 3 months and another 7 months on top to get CONTROLLED.
No cardioconversion and no ablations - I was NOT a candidate.
I have persistent but no longer rapid. Also BP great.
Have your thyroid scan.
All xrays should have a thyroid guard, ask.
Take care.
cheers JOY. 73 (NZ)
My was due to thyroid cancer which has been removed and inflammation removed with J&J TVT ugly mesh . The energy flowed back in March this year.
Had thyroid checked, and the only blood that out is liver function which could be due to meds they say (just had another check done this morning). It is just that feeling of knowing what it’s like to have felt so well the last 2 months to take that knock back is hard (had this for about 20 years) I hope you stay well and thanks for your advice x
Good Morning, yes that is the correct number 
I think that's an email address not a website.
The phone number is on my reply HELPLINE 01789 867 502 and was confirmed by admin x
I meant the info@afa.org.uk, which you said didn't take you to a website.😊.
Ah ok thanks
You don’t say the nature of the disastrous ablations and if it was traumatic I can understand your reluctance to have another ablation.
For what it is worth I had some difficult ablations and also a number of cardioversions.
Having suffered AF for many years I felt that I should not give up. I had an enforced change of EP and thus I had more ablations. I had confidence in my current EP and finally he has managed to reduce my episodes of AF to less than once a year with the last one.
I totally understand how AF plays mind games and how easy it is to think things are never going to improve. Try not to get stressed it doesn’t help. Do some slow breathing or meditation.
Talk to your EP or if you cannot get an appointment write letter I find it very good for getting your thoughts and fears considered.
Pete
Thanks Pete, my heart was punctured twice during my ablations which left fluid filled areas and extreme pain, I woke from the sedation many times to feel intense pain which has left me with ptsd, I got a large haematoma following insertion of a loop recorder and no one would see me as they hand inserted it and the consultant went off sick. I’ve had severe stress at home due to ongoing issues. I do have a new EP but he’s on holiday until mid August I’ve been sick from work since March and worry about SSP ending and what will I do then.
I appreciate your kind words and need to get up and dust myself down☺️
Not knowing what the home ‘issues’ are but understanding your concern about finance may I suggest you visit a CAB if available or checkout their online advice. My daughter works at the CAB and they do a lot of work with debt and employment issues and can signpost available financial help.
Thank you will do x
Blimey, you have been through the mill. I have been to dark places with AF and its difficult to make people understand how bad it is, if they've never had it.
I don't know what area of the country you are in but may be worth discussing with your EP, whether you would be a candidate for a hybrid ablation? If you're going to be under GA anyway, it's worth an ask.😊.
My friends today say I look so well (they know I’m not a fraud but you feel people will think it if don’t know you well eg work)
I asked my EP and he said they can do that with ablations and go round the back of the heart
I’m hoping that when I last saw him he said a lot of mine has gone to Flutter from Fibrillation due to the previous ablations and the Flecainide so last time said if it comes to ablations he’d feel more confident of being able to get the point of the flutter fingers crossed but looks like need to wait till 15/8
Fingers crossed for you. If I had a pound for everytime someone said "but you look so well" I'd be a rich gal.😁. Unless you have a plaster cast or crutches or sling, folks forget you could be suffering inside.
You are so right, we should all have a built in circuit board that lights up like a faulty computer that says malfunction - then we’d be believed 😂
🤣🤣🤣.
One of the issues I had with my 3rd ablation was that I was awake throughout and the sedation was nigh on ineffective. After that I had GA which in my view was much better.
If you have changed EP then the problems you had before, which even then were probably one of the rare complications, are unlikely to be repeated.
I had 7 ablations in all and had no complications at all except the sedation issue and allergies to electrons which is another story.
Pete
Are you now NSR after all that?
My last ablation was 2017. I only ever had Paroxysmal Atrial Fibrillation so my episodes used to happen every few days or weeks or months depending on how my heart felt it should act.
Since that last ablation which was carried out because I had Atrial Tachycardia the time between each episode has become less frequent. The last one in March and prior to that in October last year.
Even now I rarely have ectopic beats si all in all it has been worthwhile persevering.
Pete
So sorry to hear about your disappointment, I’m sure you felt you deserved a break. Having worked through the new NHS ‘decision document’ I’ve decided to give up early in the game as my ablation in 2015 wasn’t exactly a disaster but not an experience I want to repeat, so going for pace and ablate if I get the offer! I’ll wish for you to go back in to sinus spontaneously this time 🍀
Thank you Buffafly, my consultant said it’s an option but didn’t think a good idea as I’m only late 50’s and risks such as infection when pacemaker needs replacing etc. he agreed last time if I need ablation they’ll give me a general anaesthetic, best wishes for you too😉
Definitely GA! ❤️🩹
I re-read your comment & what is the “NHS Desision document?”
I wondered that too.
Maybe this ?
england.nhs.uk/wp-content/u...
Thank you for that info
Thank you for this information, very much appreciated. I have an ablation scheduled in a couple of weeks and have been having second thoughts about it. This has helped me to feel more confident about going ahead. I can't help feeling everyone on this forum should have been given this at the start of their AF journeys.
I'm glad it helped and wish you the greatest success with your procedure, and to finally be rid of AFib. All the best, Saul
I just read the document - it’s really useful. I must admit that I wondered if it were possible to jump straight to pace and ablate. I guess the disadvantage is pacemaker dependence and battery changes. The big advantage would be less uncertainty of this darned thing suddenly setting off again.(Can you tell that I woke in the early hours with it?)
I don’t think so though a cardiologist who posted here some time ago said that used to be the only option! My reasons would be: complications and failure after two years of first ablation, can’t take arrhythmia meds (except Amiodarone) because of contraindications, can’t take extra rate control meds ditto (without a pacemaker) and 77 years. So I would fulfill the criteria and may never need battery replacement ……. So quite different for a much younger person.
Good luck with it all!
I was really allergic to Amiodarone but I’ve never been so glad of an allergy when I saw the side effects it could cause
I didn’t like the idea when it was mentioned. I’m waiting to try Flecainide. Dronedarone didn’t work too well for me - got breakthroughs, raised liver enzymes. Though it did keep the rate of the AF down, and side effects were manageable - just felt weary.
The Flecainide has caused some dizziness and little bits of visual disturbance. The Amiodarone I felt like I was being burned from the inside, I felt like I could feel the shape of my lungs, burning over the thyroid and really severe itching and prickling of my skin that I felt like ripping it off. When my throat and lips started to burn I had to stop it (also wasn’t keen on an anticipated side effect of facial skin turning a blue grey in the sun). Good luck when you get the Flecainide hope it’s the one for you 😊
That sounds terrifying!
Whinge away. That's what we are here for. Whilst not medically trained, most of have been through the same or similar scenarios and have been helped by suggestions from others as to how they coped.As said previously, the CAB are a great place to start re finances. Are you able to get a mortgage "holiday" to help in the short term.
If you need someone to talk to CALM is a good start.
Do not be frightened of talking to others as they may have ideas to help you but most of all, don't focus on the bad things because that won't help your heart.
Thank you, I haven’t heard of CALM!The people on here are great, when I’ve been in a good place I’ve advised so yes took my turn again to reach out x
CALM is a charity and a good place to start if it all gets a bit too much. If you have a good relationship with your GP then that's another place to go for help. Good Luck to you qith your recovery x
Losing 2 stone has undoubtedly saved you from other potential chronic issues. Well done!! Keep persevering with those lifestyle changes. Action to reduce that stress is next, you CAN do it. Best wishes.
Thank you 👍
Remember nothing stays the same. Things will change. You will move on as your current situation changes. A whinge does us good at times. Your NOT beaten!!!! I’m off to my first EP appointment in Liverpool today for a few arrhythmia’s including PAF. I’ve no idea what they’ll suggest. More investigations I’m suspecting at first. I know that the roller coaster of our situation’s with all its ups and downs will continue for me and most of us in our situation’s. But I also know that we on this site will be here to help us on the ride. Each of us knows those ups and downs. Luckily enough we’ve not got lots of £ but We’ll cope with my finishing work which I’ve just done due to all this heart stuff. Think about some counselling to help you along this journey. There’s often a bit of a wait so if you think counselling is for you get your name down. A new EP could be the starting point of a new more positive roller coaster ride. Good luck
Good luck with your appointment today let us know how it goes, thank you for your reply I appreciate everyone who’s picked me up again x
Please whinge here if it makes you feel better. Others have given you some very good advice so I won't add more, but well done for losing so much weight! Let us know how you are getting on. Best wishes and good luck.
Thanks appreciate it x
When someones speaks out like you have done it is a very powerful reminder to me and I am sure many others how fortunate we are our conditions are not worse. Keep strong and I feel someone within the messages you have received with strike the right cord and allow you to find a little more inner peace. Wishing you well.
Thank you so much, you too have lifted me - I said above it’s that recent knowing how well and energised I felt to be knocked down like a skittle - I’ll get my strong 💪 arm back out with everyone’s messages x
Oh my gosh it really sounds like you've been through the mill. I had 2 ablations in quick succession. One in April, one in May.
Neither successful. I'm also in persistent AF. I was very disheartened after the second one and also just felt battered and bruised as I'd had cardioversions in this time too. That was without the complications you've had. I just felt like my body had had enough even though the procedures went to plan (other than not working 😕) I was awake through mine and found it stressful but tolerable.
I've had awful side effects/ unwanted effects from meds over the years though (which interact with the AF symptoms) and very little positive impact on rate or rhythm and this worries me.
The surgeon is now considering a third ablation but not sure if he'll do it. Which leaves me with meds that I am not too encouraged by.
I'm in a relatively good place emotionally and physically I'm getting there slowly. I've been on the sick for 6 months though and will need to go back to work so, like you, somewhat concerned how that will go.
It's wearing isn't it? I can really understand how you're feeling.
You're not moaning and you're not alone!
Ps I'm also on a weight loss mission, after gaining weight from underactive thyroid (a result of meds). Well done!! And remember that this will effect your mood too, if you're eating differently and/ or feeling hungry. Go easy on yourself! And you'll get there! 😊
Your reply sounds like you’re my twin - I could have written it - we’ll be soldiers together, keep up the good work and thank you
Sometimes you just need to let off steam - and no wonder, what a horrible time you’ve had. I’m yet to get my first ablation, and went into AF in the early hours of this morning - just a week after the last episode. I am in a mega-grump and I’ve not had anything like the worries that you have! I’m retired for a start - which simplifies everything.
Sometimes it feels like the drugs make me feel rubbish with a low heart rate when I’m not in A Fib, but then I know they’re protecting me when I am. I’m also sure that the A Fib affects my mood, as I get weepy. Then guilty that I’m not as ill as so many others.
Hope today is treating you a bit better,
Thank you and I’m feeling better today and lovely that so many on here have helped lift me (don’t feel so alone do you when you hear from others) I was very debilitated when it recurred in March, couldn’t get upstairs hardly without nearly passing out & couldn’t breathe to then feeling full of life and much more energy. I was only in my 30’s when all this started. Wish you lots of luck on your road and with the treatments x
You too! It’s hard to start in your thirties. I had family members with this, as a sort of advance warning, but it still waited to really kick off until my sixties.
I am so sorry to read your post and sorry to hear your anxiety, it is not unknown that many individuals do feel anxious and depressed at some point. I would recommend downloading our Mindfulness and Healthy Living booklet from our patient resources, for ideas on finding was to relax and unwind via alternative therapies. heartrhythmalliance.org/afa...
Thank you I will download that as I do try to use mindfulness but sometimes as we know things over take the process of trying - appreciate that x
Am so sorry to hear whats been happening to you. Am not surprised you feel like this. Completely understandable. You've had a really tough time. So glad you reached out. Am sending you big warm hugs 💕
I gather your EP is away on hol. Id ring his secretary and see if you can speak to someone else. It doesn't help when you're feeling terrible and your specialist is away. It happened to me once and I was put in contact with a lovely doctor who actually sorted my heart rates meds out! Been on the same med & dose since. So you never know a fresh mind might come up with another way forward.
Re work. Are you in an union. If so they can help. As can CAB. I dont know if Afib is listed as a disability which thevhelpline might know. You should be able to get in place reasonable adjustments. Eg....slower pace, lower workload, temporary reduction of hours, wfh, rest breaks, change in duties etc... So its not all in or all off. Your employer has a duty of care towards you. Ive sadly had several periods of ill health and have negotiated adjustments with my employer. Its a good idea to seek advice help before sick leave runs out as it will help with your anxiety and then thatvhelp can aid you in negotiations. Most employers appreciate it as theyre not sure what to do either. Also you can get representation to help negotiate so your not doing this on your own.
In the meantime moan away....you have every right!! You've been through hell. Just know that on here we all understand how scary and tiring it is when our hearts start playing aerobics on us. Biggest of hugs....xx
Some good advice and the hugs thank you. I’m going to get in touch with CAB asap and also try to get more info off employer. Feel better emotionally today as met some friends, got some flowers and although the pulse is racing the feeling of palpitations is slightly less today. Maybe I need to join a union too. Thanks again and hope you’re doing ok too
So sorry to hear this… 😔
Hey Flipper… I’m feeling so so sorry for your predicament and wish I could wave a magic wand to make you well. Sounds like nothing you are going through but I have been suffering just lately too. Not so much right now, but I was really down and felt ‘FINISHED’. At present, I feel I’m on my way back up and honestly can’t believe how I’m improving. It’s amazing how ‘the mind’ can work. I’m retired and don’t need to concern myself with work and financial anxieties and can certainly understand your woes. Take best of care Flipper and I’ll be putting all my positive thoughts into you recovering well. XX
Keep improving best of luck x
Nothing to add to all the other lovely replies, but I’ve only just had notice of your post. Pleased you’re feeling better today - you’ve had a lousy time. Do so hope that things are looking up for you. Hugs. Lyn
Thank you Lyn take care x
Feel for you as I know you feel so alone fighting this battle. Believe me you are not. I have know solution for you but know I am thinking of you and know what you are going through. Bless you.
Very kind of you thank you, I hope you feel better soon too x
Here's a hug xxx I know just how you feel: three failed ablations in 20 months, 12 hospitalisations with afib in three years, 9 of them requiring electric cardioversion. It's cr&p isn't it. I've just refused a fourth ablation and asked to try amiadarone but ended up on dronedarone instead. So far so good but only been three weeks.You are entitled to feel down especially when you've worked hard on your fat loss and fitness. Keep fighting the good fight and here's another hug (if you don't mind 🤗🤗))
There is only one source to relieve the anxiety, fears, depression, etc. and that is the LORD JESUS CHRIST! I've had afib for 30+ years now and the only relief that keeps me sane and from giving in to those feelings that want to drag us down is to talk to GOD and although HE may not take them away HE will give us the strength to deal with and overcome these negative thoughts. This is the truth, try it and see, all it can do is help. GOD Bless.
Thank you - we all need to find a coping mechanism and glad you have found yours 😊
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