Went to the doctor in May as I was experiencing palpitations. He hooked me up to an ECG and then ten minutes later said "I don't want you to worry but I've just called an ambulance...". I was taken up to St Marys and spent the day having tests. It wasn't a heart attack, fortunately, but I have an abnormal rhythm and get palpitations almost once or twice a week now that are not painful but really disconcerting as it feels like I'm dropping down on a rollercoaster, or like my heart is swelling. It makes me really anxious that it's the precursor to a heart attack and I'm anxious for most of the day when it happens.
The hospital referred me back to the doc to get a 24 hour ECG monitor fitted urgently but that was two months ago now and I'm still waiting for it as nobody seems to be doing anything. The doctor says it's been referred to the hospital, the hospital says they haven't received a referral and I'm on the phone almost daily explaining the whole story over and over again trying to get someone to fit this monitor. Meantime my anxiety is increasing as the palpitations are becoming more frequent and I know my anxiety doesn't help in any way.
Don't know what else to do now.
Has anyone else here experienced something like this? I appreciate many here have far more serious conditions but I am unused to be unwell and struggling to deal with the stress of it.
Thanks
Graham
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GrahamBigHeart
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I can completely relate to what you are going through.
I went to my gp in april after a month of daily palps. After the initial blood test and ecg at the surgery, I finally got an appt at my hospital 3 weeks ago with cardiology.
I had another ecg , saw the cardiologist who thought they were benign ectopic, but would arrange for a 48 holder monitor.
HOWEVER, last week I received a copy of the report to my GP stating I had prolonged qtc on the ecg taken that day and should be put on beta blockers until the 48 hr monitor is analysed.
The monitor can't be done for another month and having googled prolonged qtc, I can't bear the worry and uncertainty any longer so have booked a private holter test tomorrow.
It is so frustrating when it all grinds to a halt.
Oh god, sorry to hear that. Yes, I would be panicking at this point. My palpitations are only weekly and last for about half an hour so I guess the docs don't think it's that serious. I've googled it and apparently it's quite common but the problem was my ECG showed an irregular rhythm too which I'd like to get to the bottom of. Hopefully they'll just tell me it's all fine and I'll have to live with it, but it's the not knowing that is affecting me. Difficult to talk about it with anyone as I don't want to sound like some hysterical muppet, but equally it's wearing me down, never had to deal with a real worry of death before!
Is it not worth going back to your GP and saying what a toll this is taking on you mentally? If the hospital are insisting they havent received the referral, then your GP needs to resend the paperwork.
I know how difficult it is talking to family, you don't want to worry them by showing how upset and worried you are. It just feels life is on hold and the worry is all consuming.
Hi Graham. Sorry to hear you are in the midst of this. What about speaking to the practice manager to see if they can resend the information. Sometimes GPs just hand over stuff and so don’t necessarily know the mechanics of it all. If needs be you could offer to take the letter yourself to physically hand to the team. I doubt they will let you but it may show them how serious and how upset you are. As you say the not knowing is the worst. As TG says talk to your GP about the stress. You may also want to speak to the BHF helpline who may be able to explain arrhythmias. Hope it gets sorted soon. Take care. Zena
Thanks, I may well do that. Spoke to the GP's surgery last week for about the fifth time, they just keep fobbing me off saying it was sent on June 4th, and then giving me numbers to call, but I call the numbers and they say to tell the doc to resend it, so I call the docs again and they say they've sent it again but then I call the hospital again and they've never heard of me... I just go around in circles. I've left a message at the hospital (they never answer you just have to leave a message and they call you back in about ten days) and when they eventually get back to me this time if they've still not got it I'll ask for the physical referral and go up myself. Thanks.
Hi Graham, I have a different set of circumstances but can completely empathise with you. I was calling three different hospitals, secretary’s and GP’s for weeks. Unfortunately the NHS is at breaking point and it shows. It’s so frustrating I got to the point where I asked if I could pick up and courier the information myself. You seem to wait and wait and wait then all of a sudden a letter drops through the door or you get a phone call. I do hope it’s all sorted soon and I hope you are ok.
Hi sorry you are going through this but I would ask surgery to check the details they have for sending referral . It may be they have sent it to wrong department and it's getting lost. Ask for copy of your referral and post it to the cardiology dept . Fist class or recorded also keep copy yourself . Hope that helps and you get sorted soon
I think it’s easy on the phone for people to just say we sent it. In reality if you go to the surgery and ask to see the practice manager and explain the situation it’s more difficult to ignore you! Hope you get it sorted soon. Take care. Zena
I think many of us have gone through what you are experiencing, so we understand how you feel. It’s a big shock to believe that you’re healthy only to be told that you have a heart problem. I’m not medically qualified and we are not able to provide diagnoses here but my understanding is that arrhythmias are very common. The best thing you can do to help yourself is to not worry. If it was serious they would be all over you.
My ‘journey’ started this time last year. I had experienced occasional palpitations but didn’t recognise them as such, believing they were symptoms of anxiety as a result of work stress. What made me go to my GP was that I found I became exhausted quickly. After checking some basic parameters, he called an ambulance for me.
It’s not obvious why the hospital sent you back to your GP for a halter monitor. Don’t the hospital (or GP) already have an ECG trace that captured your arrhythmia? If not (because your arrhythmia is not permanent) then a 24-hour monitor may not capture it - a 7-day monitor would surely be preferable.
Unfortunately, we all know that the NHS is creaking at the seams and it is possible that you are just in the queue waiting For a cardiologist appointment. It may just be inefficiencies and poor communication that are preventing you from confirming your referral. You could try contacting PALS at the hospital to see if they can tell you the typical waiting time after referral. You didn’t mention whether your GP had prescribed any medicine for your condition. I expect that he probably would have (but, again, I’m not medically qualified).
You need to try and find ways to reduce your anxiety as people find that this helps. I find it helps to breathe slowly and deeply. De-stress as much as possible and keep calm.
Sorry to hear of your current situation and the added stress of this lost in post referral. I also had information lost between GP and hospital. In the end I spoke to GP secretary and explained I was getting nowhere with hospital and requested that they contact for me to chase up. When they did this things got sorted quickly ( they realised they had sent the letter to the wrong clinic!)
You definitely need to get your surgery to do the chasing up with the hospital to get to the bottom of this
I would also definitely call the BHF helpline the nurses there are brilliant. They can talk you through what uou are experiencing and give reassurance and advice into who to best contact to resolve this issue between GP surgery and hospital. They have been my lifeline with stressful situations
Good luck with it all and do let us know how it all goes
I recently had some minor surgery, unrelated in my heart condition, and during the anaesthesia had intermittent runs of AF. Since then I have been experiencing light palpitations or fluttering quite regularly, so light that I'm not really sure if it is my imagination or not but can understand that anxiety could play a part in this.
I am due to have a 24 hour ECG week next Friday at Harefield due to a previous appointment where my resting pulse has been in the lower 40's plus another 24 hour ECG has been arranged at my local hospital in Aug following the surgery problem.
Hi Graham. I would go and see the practice manager, and then, in his presence, book daily appointments to see the GP for an extended bloc on the basis that you are unwell and not receiving proper diagnosis or treatment. Be a pain and make their lives difficult. Don't let them find it easier to keep pushing you away and bouncing you between two inefficient administration systems. Zena 166 is absolutely right, telephone calls are easy for the recipients to bounce, a patient with symptoms in distress face to face in a surgery reception isn't.
Thanks everyone for the tips and support. It's really comforting to know I'm not alone in this. I'll get something sorted out this week by hook or by crook. I'm rooting for a diagnosis of benign palpitations which will simply mean learning to deal with it (I've been researching), but I need a diagnosis to move forward with this. Thanks again.
Hi I've recently been through something similar tell the gp to resend your referral & mark it URGANT also make sure they are adding their details on the referral in my case they hadn't so nobody was picking it up & it just got hurried in the system X
Hi Graham, I agree with Ian - if your palpitations are not daily then the 24 hour holter is not likely to be much use. Push your case for a 5 or 7 day monitor - that's what I had for exactly the same reason (less frequent palpitations). My results then led to referral for echocardiogram, stress echocardiogram, CT scan and finally an angiogram, so be prepared for a whole other raft of tests. The NHS is not perfect but I am so grateful for all the investigations I have had for free!! I'm now on medication and have made substantial lifestyle changes (not arduous) and feel I've been really lucky to have been 'picked up' and on the radar now. Good luck - it must be really stressful.
Hi Graham quite a few of us can relate to your situation. I had palpitations and had an ecg done at the hospital. I then had to spend 3 weeks chasing up the results while my surgery and the hospital argued with each other about what had happened to them. It was ok but i still had a 24 hour monitor fitted. It was a 2 week wait and then another 2 weeks for the results. They thought i probably had benign ectopics but in fact it was complete heartblock and I've had a pacemaker fitted. My palpitations have stopped though. Hope you get sorted soon but definitely put some pressure on to get your appointment.
Like you i have had a long wait in the past. It is worth pushing for a 5 or 6 day monitor as i was told this gives a much better picture of how the heart is performing in different circumstances throughout a few days. They dont always like lending out monitors this long but my consultant requestend it. Each time i had 24hr monitor i didnt get any symptoms !! So they never knew what was going on. I have now got a "heart reveal device" fitted just under the skin above my heart, it can stay in for up to 3years!!! I have a little device on a key ring which i keep by me to press - it puts a marker on the continual "recording" that is going on when i feel palpatations/af/or as you described it (so well) the roller coaster feeling. Worth taking look- on-line. It only took abt 30mins in hosp to fit, no sedation needed but they numb the area. I had not heard of it before - it automatically downloads via a small device at the side of the bed to the hospital. Any concerns and they ring you + the consultant will bring up the recordings on his screen when i next see him. It will enable him to see if im on correct meds etc.
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