New and alone

[seaphin]

hi. i have been told i have Afib, its controlling my life at the moment, the palpitations frighten me i am on tablets but they don't seem to be doing any thing at all, i feel alone and very emotional.

[Tototcx]

Hi there. It's a lot to get used to and I used to have the same anxieties. . Still do if I go into AF..its not pleasant if you are feeling symptoms. There's another forum on healthunlocked called the AF association which is specifically support for people with AF. You might want to join that group too as theres more specific advice from others which could help. If you are at all concerned,you must keep talking with your GP and cardiologist to get the reassurance that you need.

healthunlocked.com/afassoci...

Take care

[seaphin in reply to Tototcx]

hi thank you, i looked and loads come up, which is the one i need please.

[Tototcx in reply to seaphin]

I guess that you must search on a specific question...like coping with anxiety in AF or medications you are taking or palpitations. Its a lot of reading! Have a look through the recent posts. It might help. 😊 Or write the same piece in that forum and someone else will reply. It takes time to get used to a new diagnosis 😊

[seaphin in reply to Tototcx]

i will thanks

[Hidden]

Dear seraphin

Hello and a warm welcome to you and your first post, I hope that this forum will be of the same help and support to you as it has been to me and many others.

Your post is very sad and a little hard to answer, but first you have to remember that I am not medically trained but I have gone {and still am} on a similar journey as yourself, so can understand firsthand about some of your fears and anxiety.

First you are not alone, as your look through other posts you will begin to understand that you are instead a member of a very big club.

So you have AF, arterial fibulation, this is something that I and many others have either suffered with or are suffering with. Please this is not to distract from you as an individual but hopefully you will find some peace in really knowing that you are not alone.

There is a dedicated forum for AF on here that maybe more of a help to you.

Please try and not worry until you have the full picture in front of you and that will be after a shed load of tests and a consultation with your cardiologist who will then be able to tell you the plan of attack to your illness.

We are here to help in anyway that you feel we can, it maybe to answer your worries or just lend an ear to your concerns.

Please just use us and help lift yourself from the feelings of being alone.

Take care and please keep us informed.

[seaphin in reply to Hidden]

thank you

[Puffin1963]

Hi, I'm assuming this is a new diagnosis, which is always hard to accept and come to terms with - share your concerns with your GP and here also - lots of lovely people to support you as much as they can , best wishes.

[seaphin in reply to Puffin1963]

thank you very much, it is new and yes i am frightened about it to be honest

[Gumbie_Cat]

I know how you feel - I’m also at that stage of having been diagnosed, but waiting to be seen in the cardiology department. I’m on medications to control it in the meantime and to protect me from stroke.I have found the forums useful, and hopefully this link to the Atrial Fibrillarion forum will work healthunlocked.com/afassoci...

[seaphin in reply to Gumbie_Cat]

i have to say i am at a very emotional time with it, Dr's don't seem to have time, hospitals are slow, things happening to my body i can't explain, tablets putting weight on me for fun, i am struggling with this and i don't seem to get any answers.

[Gumbie_Cat in reply to seaphin]

I think that this time in between diagnosis and actually speaking to a cardiologist is really difficult. I had a second episode of AF last week, with an afternoon in emergency care. They told me not to worry, but to go to A&E if I had chest pain.It took 8 days to clear, and I got very emotional last week.

Here’s hoping that things improve once we do get to see cardiologists! My appointment is July, so I’m crossing fingers.

[Nannysue1 in reply to seaphin]

Hello and welcome to the club that I bet you wish you dudnt belong to . AF is scary, theres no doubt in that but you can learn to live with it and get to a stage, either with procedures or medication, where you can live a fairly normal life.

I dont know your situation but you sound freaked by this, I was too, when 1st diagnosed 8 years ago, so if you are able to, you could see a cardiologist privately, to get the ball rolling?.

A consultation will cost you about £200 without any tests and you could probably get an appointment within a week? You can flip back to the NHS after speaking to him/her. It's an EP specifically that you need to see.

[ibnseena5 in reply to Nannysue1]

I quite agree- seeing a private cardiologist initially will give you peace and help that you crave for. Then switch back to the NHS for the tests.

[seaphin]

good luck to you i hope all goes well. it is a nightmare

[Gumbie_Cat in reply to seaphin]

You too!

[lovetogarden]

So many of us understand how you feel. For me, it’s helped to find out as much as I can about afib and to read about the experiences of others. This has helped me understand what my doctors are recommending and be able to ask informed questions. And for me, knowing that my mother had afib & made it to age 95 has been reassuring. (She died with afib, not from it! Hope I’m as hardy!)

The Heart Rhythm Alliance has some great patient resources: heartrhythmalliance.org/afa...

And as others have mentioned the AF Association forum here on HealthUnlocked has so many fellow afib patient patients: healthunlocked.com/afassoci...

Hope to see you in that forum!

[Threecats]

Hi Seaphin, I am sorry to hear you are struggling. Unfortunately, I’ve found that a lot of medics look on AF as an inconvenience and not a priority as it’s not something one dies of but when your heart is trying to leap out of your chest in the small hours, it feels very much like a priority !

I was officially diagnosed with AF early last year ( paroxysmal type) after a few trips to A&E with a heart rate in the 180s that went on for hours. It was terrifying when episodes happened and I thought my life was over to be honest but, as time goes on you do start to adjust and get a handle on it.

If you can possibly afford it, it would be worth paying to see an electrophysiologist ( a cardiologist who specialises in heart rhythm disorders) privately , just to get the ball rolling. They would at least be able to answer your questions and hopefully ease your fears, then you can switch to the NHS for any tests that may be needed.

I’m on Bisoprolol which stops my heart rate going to high ( not on anti-coagulation yet as not old enough and no other risk factors) so I’m ok to sit episodes out at home now. I really would urge you, as others have said, to repost on the AF Association forum. That is specifically for heart rhythm problems and the knowledge and support I’ve found there have been invaluable in helping me get to grips with the diagnosis and what I can do to help myself.

I’m not sure what you’ve been told, so apologies if I’m repeating stuff you already know but try looking for triggers. For example, caffeine and alcohol are sure triggers for me. Diets high in sugar and processed foods are also unhelpful. In addition stress and anxiety do not help either - a bit tricky not to be stressed and anxious to start with, I know! Often endurance athletes are affected, so if you do a lot of endurance sports it might well be worth reviewing that. It would also be worth being checked to see if you have sleep apnoea, another cause of heart rhythm problems.

Read as much as you can as knowledge is power in this condition. I would particularly recommend the book “The AFib Cure” by Dr John Day - it covers everything from lifestyle changes to treatments and is very thorough.

I’m sorry to have gone on but hopefully some of the above will be helpful. Above all, remember something I was told when I started my AF journey - “ AF may be in your life but it isn’t all of your life” . It’s early days but I’m sure things will get better for you as you learn to live with this condition and the challenges it brings.

All the best to you and remember, there’s no such thing as a silly question 😊

[seaphin in reply to Threecats]

i thank you for a great note i will read a few tines

[Fullofheart]

I would also recommend the BHF nurses. This is a free phone service and was really helpful for me when I needed things explaining. Check out the website.In my experience they have time to listen and answer questions. And they were very reassuring.

I've had AF for about 18 years and you WILL find ways to live with this. But you're not alone in feeling anxious and frightened. That's entirely understandable at this stage.

[Stevie1960]

Hi seaphin,I have AF as well and am on Warfarine to thin my blood, I do get palpitations and sometimes what feels like a heavy heartbeat, but not often, I do however suffer a few side effects of the heart meds I'm on as I had stents fitted in 2013 for a Cardiac Arrest, I am reviewing my meds with them today, if you are concerned contact your GP.

[Cat04]

Hi there, it is a distressing condition if you are aware of the symptoms of AFib all the time. I went into afib 4 weeks ago, admitted to hosp drugs given, to no avail, and told I would be seen in out patients. I researched this & the wait is 42 weeks. I rang the cardiologist's secretary who managed to put me on the urgent list which is about 6 weeks list. You feel so helpless in the meantime taking drugs that don't seem to have any effects but I try to reassure myself that without them I would probably be even worse.

So I wait, ticking along at 110-120 beat per minute at a crazy rhythm, exhausted & on occasions, dizzy.

Patience is a virtue they say, so hang in there seaphin take care & may your appt be soon. There is loads of support & advice on here and AF Association. The BHF nurses are also only a telephone call away.

[Afibflipper]

I know exactly how you’re feeling as do many on here so always a sounding board.I’ve had AF for years and had 2ablations and a cardioversion. Recently went on Flecainide together with my bisoprolol and Losartan. The new Flecainide seemed to calm the AF but caused a new arrhythmia and dizziness (so have come off it for now an the AF went bananas lest night, actually woke me like someone thumping my chest to get out at 02:30am. Every time I fell asleep I’d have a nightmare and wake again (so Ducky2003 has been having a hard time so messaged to see how they were) that’s makes you know someone is out there for you - just post as you have done

Im not a medic but slow deep breaths or coughing used to sometimes sort mine out for a while but obviously if your meds have had a decent time to kick in reconnect with your medics. Good luck

[sampaloc0624]

Get all tests done, follow doctors orders, take your meds regularly, get an audience with your cardiologist. This way you will know whats going on and most importantly know what to do. I hope this helps, it did wonders for me. Get answers to your questions, un answered questions becomes anxiety