Recently diagnosed.: Hi everyone, I... - British Heart Fou...

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Recently diagnosed.

Brummiegal profile image
14 Replies

Hi everyone,

I recently spent a terrifying night in A&E - Resus with a rapid heartbeat and Palpitations. I had been experiencing attacks for several months on and off, but as I suffer with Anxiety I just put these attacks down to that. This last attack felt different, it was as though I had a wild animal in my chest fighting to get out, and my heart rate was flying. I was given various different drugs to stabilise my heart, and had been fixed up with paddles on my chest ready to be shocked when the rhythm suddenly changed and the drugs started to work. I was kept overnight in hospital and discharged the next day with a bag of meds and told I would be called back for an Echo Cardiogram. I waited the longest 6 weeks of my life to get that Echo done and then a further 4 weeks for the results, which were sent to my Dr with no notification to me at all - if I hadn't rung up in desperation I would ever have known the report had been sent to my GP. Anyway I was told I had AF and to carry on taking the meds I had been supplied - and that was it - Go away.

Is this usual folks - am i just being a little delicate here? - I feel totally isolated and terrified - I don't know why I have AF - and everything I know about it I have gleaned from the precious pages on the BHF website.

Please is there someone out there that is a fellow sufferer, and can offer me some advice or, a little re-assurance even, I would be so grateful.

Thank You.

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14 Replies
Sina-6491 profile image
Sina-6491

Yes Brummiegal.

I have AF. Only found out that is what it is 10months ago two weeks after my bypass.

I know looking back I had my first episode 13years before. Which was tge night my poor mum died.

Like you I thought it was anxiety. I have had it on and off since then.

But like I said, it was really bad straight after opp. I kept telly consultants and other medical staff, but they took no notice.

Well two weeks later it was the worst it had ever been. Just like you very high, very low etc. Blood pressure all over the place.

After a night in hospital, they told me their findings. Put me back on beta blockers and within a couple of weeks it really settled down for a bit.

Then it started up again but no where near as bad.

Follow up appointment with a consultant. He deside & I agreed as it had calmed down a lot. I would carry on as I was.

Have had some episodes since then. Wore the 24hour monitor, but nothing happened then, tippicle ha.

I have an appointment in November for a couple of issues.

But that's it really. Unless you have other episodes as bad as the night you went in. They will leave you to get on with it. I tjink it is actually quite a common condition, which for the most part is treated with some form of beta blockers. Unless it continues to be poticually arratic of high & low. It's the top of the heart arguing with the bottom of the heart. Both parts have to get along and agree with eachother, then it all settles down. Due to tge lovely beta blockers.

So if you feel it is still as bad. Or it just doesn't feel right. Make notes & book an appointment with your GP.

If you are really worried, call or go to your local cardiac unit for advice.

Hope you feel better soon, Jo 😊

Brummiegal profile image
Brummiegal in reply to Sina-6491

Hello Sina 6491,

Thanks so much for coming back to me - you know I sit here and think sometimes ' pull yourself together woman - you're on a blood thinner and a Beta Blocker, let them do their work, and just get on with it' - but it's not that easy.

I used to take Citalopram for Anxiety/Pamic attacks, since my diagnosis I havn't been able to take them because apparently they clash with my new meds - my Dr said the only thing he could prescribe me for my anxiety were 'Old Fashioned' drugs which tended to be heavy and addictive, so he would prefer not to prescribe them. Which leaves me where? My anxiety didn't just go away - he said the Beta Blocker I am taking is prescribed for anxiety as well, so it should help.

I don't know how you feel about your GP and the medical team at the hospital but I really do feel abandoned - I don't fully understand my new condition, I havn't felt well since I have been taking these new meds, and I am sooo tired I could sleep standing up, but my GP just seems to shrug it off - sorry my Friend, I am coming across as a pathetic moaner and I, I'm just scared - ending up in A&E, wired up and with my heart doing the Conga at 198 bpm terrified the life out of me, but I felt safe in the knowledge that I was in the right place - since leaving there the next day I have felt anything and everything but safe - I didn't leave the house for 5 days after in case it happened again while I was out - ridiculous really, but it was the way I felt.

I suppose it doesn't help that I have pulsatory tinnitus - I can hear my heart/pulse 24 hrs a day - so the slightest change and I hear it straight away.

What really worries me is that since I have taken the Bet Blockers my heart is running at between 50 - 55 bpm which is surely too slow? but my GP doesn't seem bothered about it, yet it worries the life out of me. I don't know what to do for the best, I havn't seen the Consultant since I left the hospital - I went to the Cardiology dept for an Echo Cardiogram, the results were went to my Dr and no follow up appointments have been made - so it looks as though you are right, unless it all happens again - or worse - I am on my own so to speak.

I sincerely hope you get your issues resolved when you go to see your Consultant next month, and that you continue on your road to good heart health.

xx

skid112 profile image
skid112Heart Star in reply to Brummiegal

The beta blocker is intended to slow your heart rate and yes should help a little with your anxiety. Firstly don't fret over such a low rate, it's ok really, also this is why you feel tired, both the lowered rate and a side effect of the meds. It gets a little better and should settle with a little time. Secondly don't worry about pulling yourself together it's normal to worry and normal to have a thousand questions. Start a list of them, ask here but ask your gp as well, amazingly some won't have a clue but others will take an interest and try and explain what's happening and why. Then there's us lot here plus the fabulous volunteer nurses helping out to try and help give our experiences. Oh and welcome to the forum!!!

Brummiegal profile image
Brummiegal in reply to skid112

Thank you, thank you, thank you - I have had more reassurance and good advice from you than any Consultant, Dr or technician I have seen - just knowing that there are others that really understand where I am coming from, and don't just nod and smile sympathetically - I don't want sympathy I want answers - as you so rightly said I have a thousand questions and until now nowhere to find the answers

I shall go to my bed feeling so much better tonight - who knows I may even sleep - now there's a question, how can one be so tired all of the time, and yet be unable to sleep for more than a couple of hours at a time - I shall search for the answer tomorrow.

I have been a Friend of the British Heart Foundation for many years, doing a bit of volunteering here and there, some sponsorship and collection of donations, in memory of my Dad and Brother who both died with Heart Attacks, but I didn't realise just how much support and help the charity gives - I really just came on this site to read any articles I could find regarding AF and to try to educate myself a little about the condition - I am so glad I did.

Thank you for your welcome to the forum - thank you for your sound advice and support - you really have made a difference to my life today.

Babs x

skid112 profile image
skid112Heart Star in reply to Brummiegal

Most welcome. The sleep thing is a mystery to most of us, I sometimes get 6 straight hours, feel exhausted at 9 but in the side awake club 3 am. I know others split their beta blockers and have half morning and half at night others at night in order to sleep. Talk it through with your GP after you've been on the meds for a while

Sina-6491 profile image
Sina-6491 in reply to Brummiegal

Aww thank you.

Yes I also have the tinnitus unfortunately. And it's the heartbeat one most of the time.

Also my heart rate is between 40/50. Not because of the beta blockers though. They said I naturally have a slow heart rate.

So that slow isn't poticually worrying for them.

I think it's when it starts h oing below that, that they have to take control. So please don't worry about yours being low from the beta blockers.

Just monitor yourself for a while and write any issues down. Times, place, activities at the time of issue. You know that kind of thing.

But yes they wont bother with you now unless you really have any issues.

Take care lovey, Jo 😆

Brummiegal profile image
Brummiegal in reply to Sina-6491

I am so sorry to hear you have the dreaded tinnitus too, but knowing that there is someone else out there that really understands what it feels like to be aware every waking hour of your heart beating away is a comfort .

Until the AF incident the tinnitus was just something I had to live with and try to ignore as best I could, and most of the time I could mask it - but since this episode I am aware of every beat, - and the missing beats too.

I have so many questions regarding the medications I am now taking, and the side effects of same - apart from being continuously tired and lack lustre I feel dizzy quite often and light headed - and this past week or so my gums are sore and I have a mouth full of ulcers now to contend with as well - is this all connected ? I wish I could be sure.

I will start to keep a diary tomorrow of related incidents, side effects to the meds etc etc. and I'm going to make an appointment with my GP to see if I can get the answers I need.

Thank you so much for your support and kindness.

Babs x

Sina-6491 profile image
Sina-6491 in reply to Brummiegal

My tinnitus was so loud until about a week and a half ago. Stil there, but not as interfering as usual.

Is strange I do get sore gums and theu itch sometimes.

Also itchy dry skin a lot of the time.

Seem to be getting earache and headache a lot too the last few months.

Not sure if any of it is conected due to meds.

I am on thyroxine as well you see.

One good thing last week & half, evan when I wake through the night. I am sleeping much deeper now. Mind you, still really tired though.

Ha, onwards and upwards ha 😕

Lucybird profile image
Lucybird

Hi Brummiegal,

I don't think that it is unusual to be worried about this, even if doctors are not concerned. You don't seem to have had a very positive experience with your GP in particular, is there someone else at the practice that you could see? If your GP knows about your anxiety then it would presumably be better for them to take your concerns seriously to try and help you not be anxious about it.

Another thing you could try is contacting the patient liaison service at the hospital (usually referred to as PALS). They will help with your concerns and talk to relevant departments. I'm sure that all hospitals have them but I definitely know that the QE and Dudley Road have them (if I'm right in presuming you live in B'ham).

On a side note are you seeing anyone for your anxiety? I did myself have some issues with this and my GP was very good. He referred me to the counselling team and kept seeing me every week as a stop gap between when he referred me and me being seen. He also gave me tablets to take if I wanted to, and some to help if I was having a particularly difficult time.

I hope some of that helps

Brummiegal profile image
Brummiegal in reply to Lucybird

Hi there Lucybird,

How I wish I was still living in Birmingham - my Husband and I retired here to North Wales in 2010 and our Son moved with us, being stuck here is part of my anxiety problem I'm sure, and once my Son escaped last October living here became 10 times worse. Hindsight is a wonderful thing isn't it.

I came here chasing a dream of living by the sea - making new friends in a lively seaside town community, and enjoying a happy retirement - don't get me wrong it is a beautiful place - for a holiday, as a home base it is terrible.

I was diagnosed with GAD - Generalised Anxiety Disorder in 2011 and put on to meds straight away, and I have been on them ever since. My Son stayed as long as he could bare it - managed to get a transfer to Exeter with his job and loves it there - he wants us to move to Devon as he says everything I wanted in my Retirement is there - but we havn't the money to go.

I spent weeks not going out of the door, nights without sleeping, days desperately trying to find a way to get us out of here. I have suffered some horrendous Anxiety/Panic attacks - racing heart, palpitations so bad I thought my chest would break in half, I would pace the garden trying to control my breathing and my heart rate - both of which always settled in the end - this has been going on for over 12 months.

About about 3 months ago as it was getting dark I could feel my body building up towards another attack - this one was different, I couldn't get my heart to settle, the palpitations were the worst I've ever had I was breathing badly in a sweat and I felt really ill - I suffer with Tinnitus, so I can hear my pulse all of the time, so I knew it was really racing, when I sat and checked it against the clock my heart rate was 165 and my Blood pressure was going through the roof - as we don't have a 111 service here I rang NHS Direct and explained what was happening - they sent an ambulance and I ended up in A&E Resus for 4 hours while they tried to get things under control - eventually after loads of different drugs they shocked me back to normal ( my heart rate had reached 200 when they did it).

The whole experience terrified me, when I left the next day, with a bag of meds, I was told the Consultant had requested an Echo Cardiogram which would be arranged asap and I was told to see my GP on the following Monday.

The surgery here is made up of 8 Drs - when you ring up for an appointment you get whoever is available at the time - over the last 6 years I have seen the same Dr twice, so as you can imagine trying to build up some form of Dr/Patient relationship is very difficult.

Since being home I have been down there 3 times trying to get answers to questions about what happened, why it happened and will it happen again - when I asked those questions i had a response of : What happened - well your heart went into AF - why did it happen - who knows - will it happen again - it could well do, if you feel ill again ring 999 this time and go straight in. I went and had the Echo done 6 weeks after leaving hospital - 4 weeks later they sent the results to my Dr - it confirmed AF - no further action needed. That's it, go home take your medication, it's on repeat, and by the way you can't take your Anxiety meds any more because they clash with your new meds which are more important. Try relaxation classes - take some Kalms, walk by the sea.

Sorry to rambled on, but it feels good to offload, thank you for reading my half a book - I am sorry really, it's not your problem to have to deal with, and I am so grateful to you for showing support.

I am frightened to death most of the time, if I'm honest - I am trying to cope as best I can but it's really hard, I felt isolated and had nowhere to turn - I am so grateful I have found this site, as at least now I have a source to find answers to my questions, and like minded people who know how I feel .

I'm going to stop now because I know I am coming across as some wimpy woman who needs to pull herself together - tomorrow is another day, I have another appointment at the Drs so we shall see what we shall see. Sorry to have gone on so - and Thank You .

Babs x

Lucybird profile image
Lucybird in reply to Brummiegal

Venting is important :) It does sound like you may need a different GP though. It's sometimes important to see the same doctor again so it seems strange to me that you wouldn't be able to, it requires more advance notice at my place (i.e. not on the day) but it is possible. I'm also surprised that there isn't something you can take instead of your old anxiety medication, and that they think kalms will be an adequate replacement! Hopefully you got some more (or at least better) information today.

I went to uni in north wales, the town I lived in was great, but as a student, after a big city I don't think I could live there as a general resident, so I understand how it can be difficult. Maybe you could try to go for the things you wanted there. Go to the beach. Maybe join a local facebook page to see what's going on?

Whatever I hope that things get better for you soon. I completely get how scary this is, and I imagine most others on here will as well, so if this place helps that's great :)

Brummiegal profile image
Brummiegal in reply to Lucybird

Hello again,

Well yesterday was a waste of time all round. Went for my GP appointment to find that he had been called out on an emergency call, and I had been transferred to another Drs appointment list. I don't have much confidence in any of the GP's at this practice to be honest, but the one I was about to see really is a Muppet. So I decided rather than be fobbed off again I wouldn't bother seeing him and would wait to see someone else.

I have read so much on here about peoples relationships with their Drs etc and how they can discuss there ailments and problems etc - I am so envious. All I have had since I was diagnosed AF is a repeat prescription and some textbook phrases.

I have been on these meds now since 1st July - so things should be settling down by now shouldn't they, and shouldn't I be feeling somewhat better?

I am tired every day, I have no energy at all, it takes me all my time to do the basics - I push myself and push myself and end up overtired and frustrated.

How long does it take for your body to adjust to Beta Blockers and Blood thinners - help x

Babs x

Lucybird profile image
Lucybird in reply to Brummiegal

As my heart condition is different I wouldn't really know about your recovery rates. For me my blood thinners have only caused a problem in that when I bleed I bleed more (which is to be expected). Or at least I presume that's the only problem. I have quite a few health difficulties so unravelling the symptoms of one from another is quite difficult.

skid112 profile image
skid112Heart Star

Hi Babs, that's not good at all. Yes likely to be your meds the way you feel but not great you didn't get the chance to discuss medication with your GP. Can you make another appointment to see not the Muppet and see if you can get some joy?

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