Where can I get 1 to 1 support as afib has ... - AF Association

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Where can I get 1 to 1 support as afib has drastically affected my QOL on a daily basis

Suntanann profile image

Hi all

Does anyone know of any 1 to 1 emotional support available to help me through this ...my QOL is being really affected 6 months into afib diagnosis ....feeling very low on a daily basis now ...I was full of energy and well being till afib took over my life and now feel iike a walking zombie due to mess on top of dealing with afib on a daily basis

Thanks all

66 Replies

Hi Sun.

Sorry to hear you feeling like this.

TracyAdmin has offered for forum members to call for a chat on the forum in the past. Maybe it's worth you contacting her for a natter ? I'm sure she'll be able to help and point you in the right direction.

I hope you feel better soon.

Paul

Suntanann profile image
Suntanann in reply to Paulbounce

Thanks paul ...have tried to mag her but must be doing something wrong as can't get the mag to go through to her ...probably me having blonde moments as usual

Paulbounce profile image
Paulbounce in reply to Suntanann

TracyAdmin

Hi Sun.

Assuming it's worked I've tagged her above so she should see the post.

Try and relax today and have a nice Sunday ;-)

Cheers Paul

Try British Heart Foundation,I read that there are staff available to speak to on the phone xxx

Suntanann profile image
Suntanann in reply to wilsond

Thank you ...I did think of them but thought probably with covid there would be massive backlogs ..bit will definitely try them

wilsond profile image
wilsond in reply to Suntanann

Worth a try definitely. 💓💓👍

ETFCfan profile image
ETFCfan in reply to Suntanann

I phoned up BHF on the off chance about a month ago when I got a date for my Pace and Ablate. I got through straight away to a nurse and she was so helpful. I would definitely try them.

Suntanann profile image
Suntanann in reply to ETFCfan

Thank you . Yes I think I will ..several. people have said try them

Desanthony profile image
Desanthony in reply to wilsond

Yes good idea. I have spoken to a BHF nurse at the start of my diagnosis. Was so worthwhile.

As the others have said, I think you will need to look for voluntary organisations both the BHF and the AFA will give good advice although I’m not sure about emotional support. You might look at the MIND website mind.org.uk/donate/?gclid=C...

Being a bloke, it’s quite possible that I see dealing with anxiety differently than some others might. When I was first diagnosed with lone persistent AF, the anxiety of not knowing what the future might bring, coupled with the fear that I might not even have a future was having a serious effect on me. My then INR nurse, who I had known for a while, could see a fairly dramatic change in my demeanour. She suggested that I should have a discussion with my GP (those were the days!!). I remember him saying, “now come on John, what’s going on, you may have AF but your hearts not going to stop”. I replied, “you may know that, but no one has told me”. His face was a picture as this reality dawned on him. I had absolutely no complaints about the way the surgery had looked after me once the diagnosis was confirmed. They arranged a referral to see a cardiologist, I was immediately put in contact with the surgery’s INR clinic, sent to the local hospital for an ECG and had lung tests.

However, ironically this all added to my anxiety because I had never been ill and all this activity added to my fear and anxiety about my future so to me, this discussion with the GP was a “light bulb” moment. There was a long wait to see the NHS consultant so he suggested I should have a private appointment to see a Cardiologist and that was when things started to change but I did have a lot of luck! Apart from explaining everything relating to AF and mapping out a future treatment plan, the Consultant was also organising a local support group and a few days later I received a phone call from someone we all know as RosyG and since then I have been involved with a huge number of AF related activities and met probably 100’s of fellow AF sufferers in the last 7 years and do you know what, all of them, with the possible exception of BobD 😉 are normal people, leading relatively normal lives although some still have anxious moments, as we all do,

Now I will be the first to admit that I have been extraordinarily lucky but some say you have to help make your own luck and I also know that might be difficult for some but this rather long missive is my way of trying to make you think about ways you might be able to help overcome your anxiety. I really hope you find it helpful.

CDreamer profile image
CDreamer in reply to FlapJack

Anxiety and low mood/depression - very different animals.

FlapJack profile image
FlapJack in reply to CDreamer

Probably but I would have thought finding ways of sharing experiences could help but finding ways to do it is not easy which I guess is why counsellors can be so helpful.

BobD profile image
BobDVolunteer in reply to FlapJack

Don't ever call me normal FJ. And yes I too suffer anxiety but cover it by helping others. (or at least trying).

CDreamer profile image
CDreamer in reply to BobD

Second that Bob 😂😂

fairgo45 profile image
fairgo45 in reply to BobD

I like you Bob

FlapJack profile image
FlapJack in reply to BobD

👍

Steve101 profile image
Steve101 in reply to BobD

You have helped me a number of times. This group has helped me handle my emotions. AF leads to a number of up and downs. However, a better understanding of AF reduces the fear meaning the lows reduce and the highs become bigger and longer.

Last week I had my first AF episode in ten months, my consultant two months previously had prescribed Flenacide as a pill in the pocket. Took one, still in AF an hour later, so took a second an hour later, and an hour after that was back in normal sinus rhythm. I knew from reading this group all about pill in the pocket, I was already well informed, so had no concerns about taking them. This forum is my ‘go to place’ when I have any concerns about AF. There is so much collective knowledge on this forum, it is amazing.

beach_bum profile image
beach_bum in reply to Steve101

Amazing how everyone with afib... depending on type of AFIB, gets different meds and Dr, Instructions. Seems no two are the same. What works for one, some, many, may not work...or make matters worse for others. Interesting. After leaving the er, they had brought my hr Bp sinus back to normal, but I felt like a zombie. I had an in-person appointment with my amazing GP 3 days later. Worse 3 days imaginable...well, you can and do image.. experience it, but my point is... during those 3 days I had ample time to research, and ended up on this wonderful forum. Of course by the time I walked into my Drs office, I was an expert... right? Well...not so much lol. He asked what they had put me on, I told them (Metoprolol) and he shook his head, picked up the phone and called my Cardiologist...breif conversation, hung up and said. "Wrong med for you". And put me on Diltiazem instantly was back to feeling fine. and that was months ago. When I asked him about the much-touted "pill in pocket" thing I had read so much about here, he said, "not for your AFIB" . When I asked him why, he said, "you are on a channel blocker not a beta blocker" and got all techie on me, but it made sense. When I got home, I chatted with my sister in law, who is a 35 year veteran of a cardiac unit at a major hospital. She fortified what my GP and Cardio said, so ya,, everyone is different. Don't hesitate to ask questions, and if not satisfied, change doctors or at least ask for a second,,third or fourth opinion.

That's well put @FlapJack. Strange, I had assumed you were a woman from the name FlapJack. Don't know why!

When my random lone Afib started I was terrified of it. No one explained anything. Cardiologist just said my heart was fine and GP said lots of people lived with it. But my Dad was suffering terribly from the effects of 40 years of it. I was lucky and tended to have violent episodes but only about every 10 months or so. I forgot it in between and carried on with my fitness and life.

When it became persistent, I was told it wouldn't kill me. But that was all. Cardiologist still useless. Said I might want an ablation at some point but not yet. Said the rhythm control drugs were nasty. So I was put on Bisoprolol and Apixaban and left to it. I hated Bisoprolol. I tried to wean off it but couldn't do it. Eventually I told him I wanted to switch to Nebivolol. He said there was no point as they were all the same. So I nodded and got my GP to switch it. It's not as good at holding the rate down, but I don't have the side effects so it will have to do.

It's a scary time getting landed with this diagnosis. But once I got over the initial fright and understood my heart wasn't just going to stop, I relaxed into it more. I am long-time hypothyroid and NHS meds don't help me at all for that. Now I'm menopausal on top so life is pretty grim. But Afib is the least of my issues at present (long may that last). But what you have said and I've experienced just goes to show how we are not given good advice at the start. We are left to stress and panic on our own. Thinking we are about to die 24hrs a day is tiring! Medics need to remember we are each being given the diagnosis for the first time. It doesn't matter if they have given the diagnosis many times. They still need to reassure us and come up with a plan.

Once we get used to Afib things settle down. This lady is still new to it and mourning her old life. But things do get better. Our bodies seem to adapt. We can still be fit and active (well I can't but that's because of the hypothyroidism crap) and fully partake in the world.

We call our van FlapJack!!

Well said ! Had same experience with my Spanish doctor told me nothing just sent me away with apixaban and bisoprodol which does nothing other than side effects. Thought it was just a Spanish idea of patient care clearly it's endemic in the medical profession I get the impression afib is not an interesting disease for them not worthy of further study.

Seems to be the standard here in France too! 5mg Bisoprolol which made me feel like a zombie! But then one size fits all medicine seems to be standard for lots of conditions these days.

That is my experience too. The first Dr I spoke to said “ don’t worry about it, we can probably get you to 60. I was 39 at the time and took him at his word. It had eaten away at me for years but it was this forum that made me think “ hang on - that’s not necessarily right” . My current cardiologist was appalled. For me, I find solace in information. Other people’s experiences have made me realise that we shouldn’t let this affliction beat us down and QOL can and is frequently improved.

OMG! What a thing to say to you ! Some medics should retrain in other careers 🙄

I am actually much fitter since my diagnosis of AF. I have lost over three stones, drastically reduced my alcohol intake and go to the gym three times a week (Bob D told me about the importance of life style changes and was the spur for me to make changes). Friends say I look so much better now. So AF was the kick up the backside I needed to make the changes that has led to me actually being fitter and healthier.

Totally agree doctor's are not interested give a pill and wave goodbye seems to be the response wait until they get it !

What are some medics like? I was told I would have a stroke, but dont worry that wont happen until you are in your 70s. I'm 65. My latest cardiologist actually called the medic a b######d for telling me that.

What are your symptoms? What drugs are you taking?

I'm also new to AFib (rushed into A&E mid April) and can thoroughly recommend the British Heart Foundation telephone support with nurses. They have been totally fabulous and I never had to wait long to get through when I phoned. Almost impossible to get appointment to talk to GP (and I've had to go private to get tests done) and they have been wonderful in answering my questions clearly and with authority, and calming my anxiety. A truly brilliant service.

I believe my GP's surgery offers a counselling service. Have a look at your surgery online and see if your one does.

Jean

To be honest I think you could do a lot worse than hang around this forum with this motley crew.

In my experience there is always a kind contributor waiting to do their utmost to help anyone in need sometimes within a few minutes but most often within an hour or two.

I for one have benefitted immeasurably at times of great stress in the past from the support other regulars are prepared to give.

In my experience counselling was useless but of course we are all so different and what doesn't suit one individual suits another and of course many get wonderful benefit from 1:1 support.

I have suffered from AF lurking round the corner for over 30 years and there have been some very dark times but I am here to tell the tale and intend to stay on this earthly coil for as long as my QOL allows.

I have also had some wonderful work done by a number of EP consultants and as a result my QOL is significantly better now than it was even 5 years ago.

Pete

Suntanann profile image
Suntanann in reply to pottypete1

Yes I agree ..thus forum and it's members are so valuable in my support network ...and for coping on a daily basis with this awful afib I think sometimes I have a dark momen when I just want it to go away and never return and it gets on top of me

A lot of forum members seem so bright and cheerful and I wonder if I will ever get to that point again

I am a positive person generally and usually pull myself out of the darker moments and keep plodding f on

Each day another day nearer to having the ablation done and hopefully a better future

pottypete1 profile image
pottypete1 in reply to Suntanann

I seriously have had my dark moments too. At one stage the AF was no ot so frequent yet I was plagued with ectopics every time I had a meal. It was awful.

I always say ALL THINGS MUST PASS and yet at the time of deepest depression it us hard to be positive.

I have had some wonderful support here and whilst I appreciate that to you we all sound cheerful & upbeat we all have our bad days too.

Just keep asking questions here and you will not feel so alone.

Pete

Steve101 profile image
Steve101 in reply to pottypete1

Agreed entirely. This Forum (extended family ) is a Godsend.

I have been low/depressed when put on certain drugs for AFib, so as Physalis above asked, are you on any drugs? They might be affecting you as they did me. Bisoprolol for example ran me into the ground, terrible for me.

Suntanann profile image
Suntanann in reply to Cyrtis

Hey yes i take verapamil ...they definetly make me very tired as I suffer with m.e. as well so already struggle with energy levels ...and very zombie like most of the time

CDreamer profile image
CDreamer in reply to Suntanann

Struggling with another condition on top of AF is miserable, as I know only too well. Feeling exhausted all of the time is exhausting but when I have days like that I have a Douvet Day - as all I can do is rest, sleep and listen to Audio Books - I have a LOT of audio books - they were my lifesaver! I have Myasthenia gravis which is now quite well controlled thankfully but took me a long time to get there.

The worst thing to do is beat yourself up about not being able to complete tasks - you really do need to just do things as and when you have any energy. It is what it is and ME is a miserable condition which few understand. If one more person tells me I look very well when I feel down 🤬🤬🤬

I have to agree with Audiobooks, to keep my spirits high I make sure I have a 45 walk everyday and listen to my book, I get lost in them and have listened to some amazing books since joining Audible at Christmas. ( I struggle to read a book anymore for many reasons so listening is a marvel )

FlapJack profile image
FlapJack in reply to CDreamer

I’m sure they do it for the right reasons, no one knows what’s going on inside…….

Suntanann profile image
Suntanann in reply to CDreamer

Oh I get told all the time how well I look . Even the a n e doctor last week said to me "well you look very well" ..I could of biten her nose off !!! It's vitally important to me to keep. Myself looking nice ..it's part of what keeps me going day by day ...I won't let myself go .

But then to get told how well you look makes you feel like your exaggerating how unwell you feel .

CDreamer profile image
CDreamer in reply to Suntanann

Exactly and that’s perceived, by me at least, that you are not believed there is something wrong. I’ve been abused in airports because I was sitting in disabled chair but told I looked perfectly ok! It’s horrible having an invisible condition.

And you are so right - you are also judged that if you can present yourself well there can’t be much wrong. Never mind that you may not be able to do anything else for the rest of the day.

I would leave off any makeup for trips to the doc. Men doctors usually have little idea of the power of cosmetics to perk up appearance but a woman should have known better. It is annoying when one is in pain or distress to be told how well you look. You must not feel you are exaggerating. Only you can know how you feel and if that's bad you need to voice that. Unfortunately women are often dismissed by medical professionals and their concerns not addressed properly - including by other women. It is a constant bias in medicine and another hurdle to get over. Does your moniker mean you like sunbathing? A healthy looking tan can fool people into thinking all is well!

ETFCfan profile image
ETFCfan in reply to Auriculaire

So agree about the sun tan. I enjoy being I te sun and tan very easily, I’m always getting told how well I look even if feeling exhausted or ill.

Auriculaire profile image
Auriculaire in reply to CDreamer

I get particularly annoyed when my GP tells me I am looking well. Inheriting good skin which has not wrinkled much with age from my Mum and paternal grandmother can be a real disadvantage at times! I find it very difficult to give myself "a day off" and just not do anything and sometimes wonder if my afib attacks are my body's way of forcing me to do nothing as I feel so wiped out from them and the extra dose of beta blocker that I have to rest. Having said that the last one came on in the morning sometime ,as I woke in afib and I decided to ignore it and do some cleaning. The activity put me back in sinus.

Buffafly profile image
Buffafly in reply to Suntanann

When did you begin to suffer with ME?

Suntanann profile image
Suntanann in reply to Buffafly

Hey I've had m.e. since I was 23 ...so thirty years now ...it's very much under control most of the time apart from fatigue

Do you know what brought it on?

I has a lot of stress at that ime and then came down with the flu and never really recovered and was diagnosed with m.e. after a year of trying to find out what was wrong with me

It is a long time to be coping with a chronic illness. I really hope you can get some relief from your afib as having the two things to cope with must be very hard. Having been floxed is like coping with a chronic illness but 6 years after my last exposure I am starting to see some improvement. Relapses are more widely spaced but still disappointing when they come. In some ways I've just got used to it as "the new normal" and resigned myself to a slower paced life but I am lucky as I am retired so don't have to stress about the things working people do. At 53 you will be menopausal and at the age when the thyroid can start to go south. Both these things can impinge a lot on your health and wellbeing . Have you had your hormone levels checked out as if these are out it is possible to correct them . Also how are your vit D levels? Low vit D can make you feel really lousy ( been there!) and correcting it is easy and can make a huge difference.

I've been taking hrt for 2 years now as when my menopause hit it hit hard and caused a relapse in my m.e. ..took me a while to find the right her but I have no menopausal symptoms now and my m.e. is fairly calm apart from the fatigue .I did have a issue with my thyroid when the adib first started but after a repeat blood test it has corrected itself aaain

I don't take any supplements at the moment as was concerned if they interacted badly with the versatile I take so in to.minds

Do you take supplements ?

Yes lots! I have found magnesium taurate very helpful for my afib. Although I still get episodes they are far less distressing without the horrible pounding in my chest I used to get at first. I think the magnesium has helped most with anxiety as I used to get waves of anxiety for no reason and that has gone. It is really important that you should get your vit D level checked. If you use sun cream when sun bathing you will make very little vit D. Low vit D can cause all sorts of health problems and fatigue is one of the chief ones. When I was diagnosed with a seious vit D deficiency ( despite spending a lot of time out gardening) I felt absolutely awful - really dragging myself about . Same with my sister - she also had such memory and concentration problems she thought she was getting dementia! Magnesium too can help with fatigue. If your GP will not do a vit D test ( it's not very likely as the NHS discourages them) then you can get them on Amazon. I think it is better to test as if you are deficient it gives a better idea of how much you need to take to correct it. I also take Co enzyme Q 10, vit K2 , high strength thiamine and a small amount of calcium as I don't eat much dairy. It's a wonder I don't rattle! But the vit D ( I get mine prescribed by my GP) and magnesium I count as essential.

tabletphobic profile image
tabletphobic in reply to Cyrtis

Yes Cardevilol made me feel very down, not so bad now I've cut down a quarter

Taking on the extra anxiety of AF particularly in the early years is a big ask if your life has no space for extra concerns. Fortunately, my cardiologist recognised my anxiety level and recommended a professional therapist. I had just 6 sessions with this person, which reduced some concerns about past issues and improving my QOL and ability to deal with AF properly.

First, know that you are heard and that many of us share these feelings or have been through them. Matter of fact is been thinking of doing a post on Depression and how AF can lead us to that place. I've been there more than once. You are fairly early on in your AF journey and it's a huge life change in my own experience at least. If you need support in coping with that change you should definitely ask for it via your GP. A good cognitive therapist can also help you manage the feelings that come up from having to cope with AF and help you decide startegies for feeling more in control of your life. I ended up paying for a few sessions of psychotherapy about 4 months into my journey and wouldn't hesitate to do it again if necessary.

I find even just contributing parts of my AF journey and experiences and reading others issues a great release of tension and anxiety and indeed losing some of the low points I experience. I found Bisoprolol a drug that made me feel very low and was very pleased to get off it. When I feel low I lay down and drift off listening to mediation music and that certainly calms me down. Hopefully you will find the right person to chat with on a one to one basis very soon. Take good care.

Just read a bit more into the thread and realised I'd missed about the M.E. So that's making me think differently. BTW your post got consideration in my morning meditation 😊. I'll throw some ideas at you - talk to GP as many suggest - consider finding a good Functional Medicine Practitioner (one who's medically trained but also uses other modalities such as nutrition ect) - make a list of things you CAN do. I'm meaning here things you enjoy and perhaps can do one of each day. It can be as simple as curling up under a blanket with a cup of tea and that digestive biscuit and listening to music or watching a Netflix series. Can you sit outside (when it's not raining!) And enjoy the sounds around you or the view? Or just the sky even? I sometimes lie down on the grass and look at the sky. Eckhart Tolle helped me. Not everyone's cup of tea but his stuff on being in the NOW and knowing that now, in this moment you are OK really helped me because I'm anxiety bunny who projects into the future. Physical therapy -.are you able to find a good massage therapist? Can you do this with your M.E.? Forgive me if I don't know. One thing that helped me here very early on was people's responses to a post I did on how to distract yourself during an AF episode. Some of the responses really made me laugh, and some of them I put into action. You might get some ideas from that. April 2020 I think it was. I felt very desperate at that time. Another thing I did was to set up a Buddy System with two girlfriends. It was just via messenger, or you could use what's app. I'd message them when I had an episode and they'd make supportive responses or just make me laugh. They're still there for me if I need them. I know you get yours in the night but maybe you could organise to do something like that the next day. It's a kind of do it yourself talk therapy.

Visigoth profile image
Visigoth in reply to Singwell

Hi Singwell, how does one find a good functional medicine practitioner?

Singwell profile image
Singwell in reply to Visigoth

You could try here. Make sure you select MD as a degree qualification do that there's mainstream medical training too. You can also select speciality such as GP, Nutrition, Gastro etc. ifm.org

Visigoth profile image
Visigoth in reply to Singwell

Thank you so much - that’s really helpful

Some good advice and personal experiences of how we are all coping in these very strange unprecedented times..I’m sure we all have all had our dark moments when everything just feels too much and life has a habit of piling more problems on top of what we are already trying to deal with personally my AF seems a very long way down my list of priorities at the moment but I have found that gentle exercise has helped my general wellbeing enormously just a walk whatever the weather for 20 mins or as much as you feel comfortable with twice a day clears my head gives me some clarity and puts things in perspective and for myself I have found it a great help.

Something that arrived in the post recently that maybe available to you in your area is an NHS online CBT if you are feeling anxious stressed or depressed I have no experience of this but kept the paperwork it says a confidential totally private free service.

The contract details are 08000745560 or iesohealth.com/cbt-surrey

Stay well Suntanann.

Hopefully with lockdowns easing 🤞there is something which you may be able to do which I know has been helpful to others. You need to be cautious, but if you can find any forum members within reasonable travelling distance, maybe you could arrange a coffee/lunch meet in a safe, public place, just to meet and chat. Pre Covid, there were a number of such gatherings, often called “Natter ‘n Nosh” and they were an extremely helpful way getting like minded folk to share their experiences. I’ve been to a good few around the country and very often, AF is not even mentioned!

A word of caution, this forum is generally a safe environment but there are no controls on membership so you need to be mindful about giving personal contact information. Just a thought…….if you want some suggestions on how to set about arranging one please message me.

I was phoned on Christmas Eve and told what my local cardiologist thought was wrong and that he was referring me for an ablation. Didn’t want to put me on any of the “nasty” medications……. When I was finally seen by EP he didn’t want to ablate and put me on Flecainide. I take that along with Diltiazem and Apixaban, as well as various other medications for various other ailments. My heart rate has been lowered and the irregularity is better than it was. I have had to take Furosemide as well because the Diltiazem was causing fluid retention. But, the upside is, I completed a four mile walk one day last week, the furthest I’ve walked without getting breathless for a long time!Where was I going with this? Oh yes, after getting that phone call on Christmas Eve (thanks for that!) I think I cried every day for two weeks at least! No other information received at that time. In fact it’s due to this group and a local support group that’s helped me get my head around it all. See if you can find a local group at all. Find out if there are other members here from the same area as you.

All the very best to you. Hang in there and talk to us all xxx

Suntanann, I'm sorry you're going through this; I empathize since I was the same when first diagnosed. When I finally got on a good regimen of meds, and knew what my triggers were, I was able to deal with my episodes easier as I knew what to expect, length of episode, etc. Two ablations later, things are looking bright now and a-fib doesn't rule my life anymore. Best of luck to you!

Hi. I was lucky enough to be referred to a cardio psychologist during lockdown and had telephone sessions with her over a period of months. I was very emotional and depressed as not only do I have a fib but also heart failure and was very ill throughout most of 2020. I was also diagnosed with tinnitus and lymphodema during this time so was not in a good place. It took nearly a year to get meds right for the a fib but talking to psychologist definately helped. Counselling may well help you. Good luck. Xx

Thank you. My daughter sufferers with tinnitus and my aunt has heart failure along with afib and lymphodema . My aunt has been through a terrible time with her lymphodema and has become housebound now because if it ...she's unable to drive her car and has fallen into a bad depression bought us getting counselling through her gp ...so I've seen the impact first hand and I have much empathy for you Good new's that you have your afib meds working for you properly now ...as in beginning realise it can take months to get the right combination of meds working properly

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