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Atrial Fibrillation Support

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Fed up tonight...

booboo73 profile image
42 Replies

Hi all x 

Well I thought my new tablets Dilzepam were working but after 36 hrs now in fast AF/flutter obviously not! 

So I now have fast AF, flutter, SVT and having many eptopics. I am running out of medications to try and my lovely doc suggested Dronerdone ...has anyone tried this ? Im becoming increasingly depressed with all this now and finding it hard to act like Pollyanna anymore. Im shattered and like a zombie and scared this is what the rest of my life will be like. Im clinging on to my ablation helping but I feel my ticker is becoming so rebellious its not gonna cease without a fight. 

Sorry to rant but im at my wits end with it now and sick of feeling scared and tired. Any experience of how to cope with this would help x 

Sara x o x 

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booboo73 profile image
booboo73
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42 Replies
Buffafly profile image
Buffafly

I'm really sorry to hear that and  I'll pray you have the ablation soon and it WORKS! 

PeterWh profile image
PeterWh

Very sorry to hear about all these things.

Easier said than done but try and relax and chill.

Personally I don't believe that this is what the rest of your life will be but will it be exactly as it was a year ago? Quite possibly not but for sure you will be able to adapt.

Looking at it another way for all our problems and issues we are far better off than the many who get told they have terminal cancer and have a few weeks or a month to live. My dad was given a year when diagnosed with bowel cancer though he told us over five years. He did live four or five years but due to taking part in a pioneering treatment.

Chin up!!!

booboo73 profile image
booboo73 in reply toPeterWh

Thank you x I've calmed down a bit now and had a good cry. I think im just so tired with not sleeping and im very emotional.  I saw Dr Fay today and he is confident that I will be okay...he truly is a god send. I will have to just get through the best I can until my ablation.  

With regards to where I was a year ago..in a worse place than this.... I was drinking  heavily daily and extremely depressed. I was emotionally battered as I was grieving for my precious Mum...so when I was diagnosed with AF I stopped drinking immediately and have no desire to drink again as it scares me to death.so in a strange way AF probably saved me from alcoholism! ! 

I will be ok and thank you for your kind words 

X o x

Rellim296 profile image
Rellim296

We live through winter but after it we get spring again and our lives go through phases too, and you are just having a very long and particularly hard winter at the moment.  It's not how it's always going to be and when things are better they will feel extra good because of the contrast with how low you have been feeling for so long.

booboo73 profile image
booboo73 in reply toRellim296

What a lovely way to look at things Rellim, I will remember this. x

Christo4 profile image
Christo4

Booboo.

Thinking of you, your doing well when you look back,take each day as a time.

Keep in touch with us here if it helps.

Take care.

Christo.

booboo73 profile image
booboo73 in reply toChristo4

Thank you and I am sure I will be keeping in touch more x

AnneTS profile image
AnneTS

Oh how I do sympathise with you. Hang in there and do whatever it takes to see a successful end to your AF journey. I am on Amiodorone, Digoxin, Diltiazem, Warfarin etc. And have decided that the proposed 4th ablation will be a pace and and ablate. Hopefully your heart will start to behave and your AF journey will have a successful conclusion. Hang in there. Rooting for you 😘

booboo73 profile image
booboo73 in reply toAnneTS

Thank you Annel - I hope its 4th time lucky for you and rooting for you too x

Bob56 profile image
Bob56

Since I was first diagnosed with AF some 25 years ago, I have seen an enormous increase in the knowledge and treatment of this condition.The range and combination of drug therapies has advanced considerably and we have moved from a position where ablation was considered a last resort to the point where it is a very recognised  tool for intervention in the fight against AF. I can't say whether the ablation you are waiting for will be the complete answer, but I would be surprised if it wasn't a very significant step in your own personal fight. I look forward to you telling us all about it and until then this forum remains a very safe shoulder for you to cry on, anytime.

booboo73 profile image
booboo73 in reply toBob56

Oh Bob thank you and you are so right and I am lucky as I am of interest with the proffessionals due to my stomach problems that may be related tp the AF so they can use me as a guinea pig for anything!!

abihel profile image
abihel

Hi I'm so sorry your going through this...I know only too well how you feel I'm exactly the same I have had two ablasions after the first one I stayed in sinus for 4 months it was bliss and reminded me what feeling normal was like! My second one was unsuccessful and I was put on amiodarone, I don't feel like it's doing any good at all I'm still in permanent Af with  at rate of on average 110bpm...it never goes under 100.

Last week I went for a cardioversion but after three attempts my heart refused to back in nsr so now they want to do an internal cardioversion...very scary.

I also try to keep cheerful and hopeful but just sometimes it all gets too much.

I hope things get better for you this forum is a lifeline and you can post anytime for a rant or anything else.

Best Wishes

xxxx

booboo73 profile image
booboo73 in reply toabihel

Hi Abihel, What bad luck for you and I truely hope things improve for you. Im so pleased when my hr is 40bpm (I am like a zombie but it's normal sinus for me and then it shoots up again - so after 4 months of bliss it must be awful but everything crossed for you that you have more bliss soon xxx

Noidea63 profile image
Noidea63

Bless you it does seem like a long dark tunnel, but you will get there. Your doctor sounds fab so keep calm easier said than done I know, deep breathing cuddle a hot water bottle(well it works for me) and hope you have better days ahead.

booboo73 profile image
booboo73 in reply toNoidea63

Thank you Noidea, I am very lucky with my doctors and they are so good with my dramas! I have a wee teddy and my 3 cats to cuddle up to and they always cheer me up! xx

cbsrbpm profile image
cbsrbpm

Sorry you are so down at the moment, I know how you feel having just had a failed cardioversion. I think the tiredness make it all so much worse. Take one day at a time as tomorrow things can look different. Our doctors are wonderful and I am sure yours will get you sorted eventually. Maybe get in touch with your arythmia nurse and see if there is a possibility of bringing your ablation forward or ask to be considered if there is a cacellation. Chin up and try to fill your days with nice things. Losing a mother is very hard as you always want them when you are not well. Lost my mum a couple of years ago, she was 94 but the age makes no difference and I find it strange that I dreamt of her last night for the first time and she told me that she loved me, woke up feeling like she is looking out for me. 

B🐝

booboo73 profile image
booboo73 in reply tocbsrbpm

HI x you are so right today I feel so much better than i have in weeks - still the same problems but I agree tiredness makes everything much worse and when I am in bed I feel every heartbeat (or lack of them haha! so its better to be busy and occupied for me) Yes I thought of bringing it forward, I have that option but I really want to get in tip top health first and banish the evil cigs and rubbish food. Sorry to hear about your Mum, it really is the hardest thing, but what a lovely dream you had - the only dreams I have of Mum is her telling me off - maybe thats a good thing for me at the moment haha!

So sorry about you cardioversion and here hoping to success for you and everyone soon x

jan-ran profile image
jan-ran

No real advice, just a virtual hug and sympathy.  It's well worn, but this too will pass.

booboo73 profile image
booboo73 in reply tojan-ran

A virtual hug from you Jan is lovely anytime x Thank you x

Barryjay profile image
Barryjay

Hi Sara. Like you I feel that im running out of options. I've had two failed ablations. Two failed cardiovertions, and now they want to put a pacemaker in and ablate my AV node as a last resort. I feel like giving up. My pulse rate is 143 at rest. So it feels like ive been running in a marathon. Darondarone is worth a go, its the only drug i haven't tried. I just thought I'd let you know, that your not on your own. Good luck Sara, i feel for you. Kind regards Barry. 

booboo73 profile image
booboo73 in reply toBarryjay

Thank you Barry. It is scary when nothing seems to be working isn't it. But there are always options I suppose and I think the main thing, for me anyway is to try and be positive and everything is 100 times worse when i am depressed. Fingers crossed for us eh! x x

Fenderman profile image
Fenderman

Hi sara    Im so sorry that you are feeling so down and everything just getting on top of you. You will have good and bad days and you have your ablation to look forward to so theres every chance that this will improve your quality of life.

We all have dark moments and all of us on here are thinking of you

I know its hardto be positive  i have  many  depressed moments too but thinking of my lovely 2 grandbairns  generally makes me snap out of it.

Keep in touch  and just remember you are not on your own we are here day and night for you

Rich

booboo73 profile image
booboo73 in reply toFenderman

You are a lovely man Rich, you really are, I wish we would have had more time to chat in Leeds. I was just having a meltdown with it the other night but I am okay now just so many things happening at once and as we have said before its the mini runs that are getting to me most so I really understand how you feel now - wish they would all just bugger off!! x x x

Fenderman profile image
Fenderman in reply tobooboo73

Hi how are you doing. Not seen any posts from you for ages. Let me know how things are please regards rich

countrygirl1 profile image
countrygirl1

Hi Sara

I'm sorry to hear of your problems.

I know everyone is different with drugs but just thought I'd say I take Dronedarone, have done for 10 weeks now and I have felt my heart calm down a lot. I had previously been taking varying levels of Bisoprolol for PAF over the 7 months since my AF started after surgery last year. From the moment I came round from the anaesthetic I felt like a different unwell person with an incredibly sensitive heart and was having AF episodes every few days. Now I'm calmer knowing I'm on Apixaban, and episodes stretched to weekly and occasionally fortnightly occurrence. Now on Dronedarone I feel completely normal and have had only one episode in the 10 weeks.

I'm lucky so far on this drug, it works for some people and not others.

Hope you find some peace soon

Best Wishes, Jane

booboo73 profile image
booboo73 in reply tocountrygirl1

Hi Jane, thats good news about the Dronedarone. Its my next option and I think I will take it - something has got to work!! I will get in touch when I start it if thats okay? xx

countrygirl1 profile image
countrygirl1 in reply tobooboo73

Yes of course, fingers crossed it works for you! I was told to take it with/after food to avoid any gastric side effects.

Good Luck x

David1964 profile image
David1964

thinking of you over on the other side of the planet too, Sara.  I am sure you will find surgical and medical interventions that will assist you.  

booboo73 profile image
booboo73 in reply toDavid1964

Thank you David. I hope so too and for you and everyone else also x x

Hilda6363 profile image
Hilda6363

Try flecianide.  Worked for me when other meds did not.

booboo73 profile image
booboo73 in reply toHilda6363

I tried it but no success - sob! xxx

irene75359 profile image
irene75359

I am not qualified in any way to give advice, but you do seem to have had a really rough time - lots of people here including me thinking of you and wishing you all the best.

booboo73 profile image
booboo73 in reply toirene75359

Thank you Irene, today is a better day and I am ready to battle on x - x

davee profile image
davee

I know what you mean, about all the medications and being so depressed, sorry for that. It is all to do with our problem though, lack of sleep, being cranky, moody, etc., however, don't fall into the trap of more dope that you don't need and can't get off. I've just had a paramedic here and I'm in full blown AF (don't want, don't need) cheer up. And so will I. 

booboo73 profile image
booboo73 in reply todavee

Hi Davee, more dope??!! Although I have heard a joint does calm the bumps down I am not ready to try that!! I do hope you are okay? xxx

davee profile image
davee in reply tobooboo73

I feel fine thanks. Just taken my morning dose of prescribed meds. 13 in total. 7 tonight. Take care x

bartk profile image
bartk

Sara have you tried Bisoprolol? It worked wonders for me when the Diltiazem lost its effectiveness after several years.

booboo73 profile image
booboo73 in reply tobartk

Yep that was the first but changed to Nebivolol which im on now 10mg daily and the diltiazam as pip. X x x

paul29 profile image
paul29

I have been on Dronedarone for 5 years. For the first 18months it was marvellous hardly any AF then it crept back. I had an ablation last October and although the af raises it's head occationally I am much better. Please try the dronedarone it may work for you.

Good luck and try to relax.

Pauline

booboo73 profile image
booboo73 in reply topaul29

Hi Pauline thank you soon much for that positive info... Nothing else seems to be working but should be having my ablation in 2 months or so. At this moment im free of any naughty arrithmias except etopics but if it starts again I will definitely try the drone x x x

Eliza2 profile image
Eliza2

Hi Sara, it's very scary! Are you scheduled for an ablation!   The medications I found were dreadful and did not take care of the problem.  Any time you want to talk you can pm me.  I totally get how afraid you must be....I have been through it.  Take care.

booboo73 profile image
booboo73 in reply toEliza2

Thank you so much Eliza x yes im dealng with it much better than 6 months ago and my ablation is gonna be apx 2 months. Im on max. Beta blocker so that's tiring me out. Im so looking forward to the ablation and conditioning my wee brain that even if it isn't  successful it should ease symptoms and I shouldn't have so many tablets. X I will be on touch x 

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