Help with symptoms: Hi all I'm new here... - British Heart Fou...

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Help with symptoms

danniegemz profile image
6 Replies

Hi all I'm new here and joined out of desperation. For 2 years now I have jad these awful palpitations, I had them many years ago when I was 19 but they vanished in my 20s they never had pain back then either. But I 2020 I started getting them again this time they started with no pain and would last for about 2 minutes when laying in bed , now it's happening every single night with more and more symptoms , so far this includes chest pai left side , left forearm and wrist pain, occational pain in left calf on the leg and pain in soul if my left foot, and now tonight dizziness. I have been to A and E multiple times now each time I'm told there is nothing wrong with me on the ecgs and blood tests , however several times now I have in fact been told I have something called a right branch bundle block only to be told its nothing to worry about , they pain is getting so severe and the palpitations so frequent I often go 3 to 4 days with no sleep at all. I'm perfectly fine whilst sat up or standing yet the moment I lay in bed it sets off , also laying on my sides seems to increase both the frequency and severity of the symptoms . I have now resolved to stop going to Q and E now as I'm treated as a time waster and utter contempt by the doctors some of whom I've seen a few times now and I also think I'm wasting my own time sitting there for often 10 plus hours only to be dismissed and claims being made that I'm fiy and healthy yet my symptoms are getting worse daily. So I'm now asking here out of sheer desperation.

Kind regards

Dannie

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danniegemz
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6 Replies

I'd see your GP and tell them you want a referral to a cardiologist. My understanding is that RBBB is usually benign, however if you are concerned about symptoms you should get it checked out.

Ectopics (palpitations) are often benign and most people get them but aren't aware of them, but once you become aware of them they are difficult to ignore.

danniegemz profile image
danniegemz in reply to Captain_Birdseye

Hi there firstly thanks for your quick reply, i wrote my original comment at around 6 am as i hadn't slept again so a lot of detail was missing and upon re-reading what i wrote you can see i made more than a few spelling mistakes due to be tired and typing on the phone. What i did not report here is I have already been under a cardiologist for about a year now and have had US. Thoracic ECG's standard ECG's multiple scans including a CT with the dye and each one has been reported 'normal' which has now led me into this void in the sense that the GP basically has said since he has done the referral to cardiology there is nothing more he can do and A+E have a similar view there response is always that they are only there to prevent death not really to diagnose , go back and see your cardiologist. Now the problem with the cardiologist is that they will only see me (and when i say this not even in person its all via telephone) once ever few months then its back on another waiting list, in fact the plan was to hook me up to a holter monitor however after ringing today i found its going to be another 13 weeks before i get that. The reason i am constantly calling 111 and visiting A+E now is simply due to the fact the symptoms of pain i already had are getting much worse, and now i have this new symptom of feeling dizzy , all of this only happens when im laying down in bed day or night doesn't really matter i just have to be laying down, this prevents me from sleeping, i know its not a panic attack as i suffer with social anxiety i know the difference in what a panic attack is and is not, this feels completely different, the pain is often crushing as if someone has jumped on my chest, and the pain spreads the pain also only occurs moments after a palpitation cycle and during these cycles as i call them i have taken blood pressure readings and have noticed a drop in blood pressure measured of course in the sat up position my blood pressure often drops to around 91 over 49 which is in the low range, however none of the dr's the cardiologist included want to hear about this, im dismissed at every opportunity because they beleive my heart is in perfect health as they have said in the past. I hope this shows the full extent now as to why im on here trying to find answers, it truly is my last roll of the dice, i live alone too so it is exceptionally frightening when each and every night i go through this without fail usually within the first 5 minutes of laying down.

jeanjeannie50 profile image
jeanjeannie50

Have a look at York Cardiologist Sanjay Gupta's simple YouTube info on Right Branch Bundle Block:

youtube.com/watch?v=Tl0i01F...

Jean

danniegemz profile image
danniegemz in reply to jeanjeannie50

Hi Jean thanks for your reply this video was highly informative and certainly offered more information than my own cardiologist, it still does not offer a concrete direction diagnosis wise but certainly opens more avenues of investigation as to what might be going on, also please see my reply to Captain_Birdseye for more details on my issue and what iv'e done so far, any other suggestions most welcome.

Dannie

ScttH641 profile image
ScttH641

Hi danniegemz!

I'm very sorry to hear about your experience, and what your are going through.

I read through your post's and replies, and your experience is quite similar to what I have experienced myself.

I have had all the test done by a Cardiologist, ECG, ECHO, 24hr BP, 7 day Holter-monitor & CT Angiogram with Calcium score - All completley clear, no signs of any problem with the heart, yet I still feel unwell all the time and have symptoms that have seemingly no explanation. Went to A&E twice last year when all this begun for me. I too have a history of at times severe anxiety / depression.

From what I've read you have mentioned RBBB I'm not in the know to advise you on that, as it would be wrong of me as i'm not at all qualified to give any medical advice at all.

Whilst I can't help with the medical side, I can empathise with that your feeling very scared right now, I can tell by your post and your replies this is having a huge impact on you and your overall wellbeing.

If you strongly feel that there is something wrong physically with you, then I would encourage you to continue discussing this with a GP, however I would also recommend possibly considering some support in regards to how this is making you feel in regards to anxiety and worry.

My experience is that I lost someone very close to me, from a sudden HA, after that for 9 years I didnt look after myself very well, poor diet, long work hours. I think last year my body just said to me enough is enough, I started to make alot of changes for the better but at the same time felt quite poorly still and then anxiety around my heart health kicked in... I developed a very unhealthy obsession with having a heart attack, heart disease, narrowed arteries etc. basically anything that could be wrong with my heart I was afraid of it.

I had a similar experience with the GP, one look at my history and he thought your just worrying, I pursued private tests and spent a large amount of my savings on all those tests I mentioned, one which I regret in particular as it casued more anxiety than it was worth as I started going for every little thing I read about online. I've spoke to multiple cardiologists and non of them seem worried at all.

I guess what I'm trying to say is, although you have mentioned RBBB, that worry around health can become extremely consuming, and in turn, prolonged anxiety can manifest in very real physical symptoms, many people often belive anxiety to be "all in the mind" but studies have shown it has a very really physical effect on the body. From my own experience I have light headedness, aches and pains all over, stomach discomfort, a very strange feel like I can't breath but can, palpitations, racing heart rate etc. These are genuinley terryfying, I've done calls to 111, even nearly went as far as 999 one night but I gave it a few more minutes and it seemed to get a bit better.

You might feel like nobody understands how you feel at the moment, but I want you to know that there is people who will listen, and who will support you.

I would recommend possibly looking into some help dealing with the anxiety around this, even if you do still need help from the GP etc. Having a health condition can be very stressful, but there are ways to deal with that stress and make it more managable.

I'll link you some resources below for some services what can offer you some support with how your feeling; I'm not sure where you live, but many NHS talking therapies have self referall services so you can arrange them yourself without a GP if you would like to.

There's also listening services such as Samaritans or Shout! which is a text based service, these are always good for those moments where you feel alone and just need someone to talk to.

This has been a long reply so I'll wrap it up, but what I would say is pursue further medical help if you feel you need it, but also maybe look into some support around the fear your feeling. It's not easy, I know, but also take a little bit of peace of mind in that, you've had a number of very reliable tests, If there was something, It would be found and you would get the help you need.

I know from my own experience I was always saying "if I could just get this test I'd feel better" but I think if I'm being honest I was looking for something that I won't ever be able to know the answer to. For me what makes Heart Attacks so scary is the sudden nature of them, and you hear these stories of seemingly fit and healthy people just having them, and then I look at my past lifestyle and think... What chance do I have? The thing is though non of us ever know what could happen, but while we let our fears consume us, were actually missing out on today.

I dont know how much help that might of been for you, but I want you to know your not alone.

Best of luck to you, I wish you well and I really hope that you get the help and support you deserve, and get back to living a happy and healthy life.

To just add to my previous post. If you are feeling like your GP isn't listening, There are some Apps such as Babylon Health where you can speak to a GP, they charge, but it would be a different perspective on whats going on, and they can do referalls etc. if needed.

As mentioned, some links below which you may find helpful; Also the BHF has a HeartHelpline you can email, or call to speak to a Cardiac Nurse, that might be something worth looking into as well.

nhs.uk/mental-health/talkin... - NHS Therapy directory

samaritans.org/ - Samaritans 24/7 Listening service

giveusashout.org/ - Shout! 24/7 Listening service via text if you'd prefer

bacp.co.uk/search/Therapists - BACP Therapists in your local area (Private)

bhf.org.uk/informationsuppo... - BHF Heart Helpine

dani777 profile image
dani777

it's criminal, isn't it? i've also mostly given up with A & E as for years now most of the doctors have completely dismissed me, in spite of abnormal ECGs and other test results that aren't quite normal. they also ignore my family history of arrhythmia. only ONE A & E doctor, who was at another hospital and didnt have access to the notes which pigeonholed me as an anxiety case, was concerned about my ECG and told me he thought i could have heart block or some electrical conduction issue. he wrote to my cardiologist, who completely dismissed it all. i've also had paramedics assess me and tell me they were concerned, yet when i get to A & E, the doctors act as if i'm burdening them with my presence, and are very quick to discharge me.

i can see it in their eyes. they just seem annoyed by me.

this is negligence. nothing short. and it seems that a lot of heart arrhythmia patients are getting treated quite badly by doctors. why.

my cardiologists have told me, more than once, to seek mental health support. so i did. and i've been told, many more times, by mental health professionals "dani, are you sure it's not your heart? because what you're describing doesnt sound like anxiety to me"

i've also told paramedics that there was no point in bringing me to A & E, as i wouldnt be taken seriously. the paramedic said "but you need to be seen cos something isnt right". so i let them take me to hospital. the paramedic, bless him, had a word with the staff. i think he must have asked them to please take it seriously. with him there and watching, the staff quickly ushered me onto a bed, and made out as if i was high priority. soon as the paramedic left, they booted me out of the room and discharged me.

and they're "wise" to me now at the hospital i normally went to. as my ECGs are always abnormal, and it says it on the print out things like "possible infarction or ischemia", they now refuse to show me. if i go anywhere else, they're happy to show me as they dont have the notes.

the last time i was at my regular hospital, i had gone in, once again, reporting severe chest tightness, shortness of breath and palpitations, and just not feeling right, i was very quickly written off, and ESCORTED out of the hospital by a staff member, when i have never made any scene there, ever. unbelievable.

anyway, i dont know what to say to help you, apart from sharing my experience with you so you know you're not the only one.

again, i wish to God that some of these doctors would feel what we feel, for a year, and see how they get on. see if they keep their jobs.

if you can afford to go private, do it. sadly, i cannot.

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