Why won't doctors do anything? - British Heart Fou...

British Heart Foundation

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Why won't doctors do anything?

dani777 profile image
6 Replies

Hello. I have suffered heart palpitations since my 20's, only in 2019, they got MUCH worse, literally out of the blue. They've gotten progressively worse since 2019. I now suffer palpitations (usually a feeling of heart flutters or skipped beats) every single day, off and on, ALL DAY from the time i wake up, until i fall asleep. There is no mercy in this. It never leaves me alone. I have no good days anymore.

This condition has been a wrecking ball in my life. I cannot work anymore, I rarely go out anymore, I rarely exert myself because that makes it worse, I have no life. Everything seems to trigger my heart to be worse. Talking, singing, eating, moving around, everything.

i cut out caffeine, alcohol, etc years ago but it's made no difference

I was put on beta blockers - propranolol, 40mg 3 x a day, a few years ago, and it's made no difference. I've tried other beta blockers and nothing improved. Docs will not give me drugs like flecanide or anything else. They act as though I'm making a big deal out of nothing, when this is like torture. Their attitude is appalling. I also believe that I am not being taken seriously because I'm female. It sickens me that if I were male, doctors would be more proactive.

My ECGs have been abnormal since 2019 when my heart started playing up badly. Showing S and T wave inversion, mainly. Docs now say this is "normal" because I've had it for so long. That's their logic.

They've done tests on me. MRI. Echo. Found nothing sinister. Claim I only suffer bouts of ventricular ectopics and bouts of bradycardia, but nowhere near enough to warrant cathetar ablation, again even though I suffer every single day and it's had a huge impact on me mentally.

Docs haven't offered anythinng else. Pacemaker, other drugs, other tests.

Last time I was in A & E, very recently, doctor thought I had heart block but my cardiologist and GP surgery are of a "do nothing" mindset.

It's like they are just letting me suffer. I cannot understand this. They would treat a dog better.

I also suffer bouts of bad chest tightness that come and go.

But my fifties have been taken away from me, literally. I have had no quality of life since I turned 50 when all of this started. Zero. I spend every day sat up in bed, and even sat up in bed I still get bad palpitations. NOTHING stops them.

Who will help me? This is getting worse. Who will help me? Why am I being dismissed and written off? Why won't doctors help me? Do they actually think this is all in my head?

I also have a family history of heart arrhythmia, which doctors seem to ignore

Someone tell me why I am being treated as if I'm disposable

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6 Replies
Ewloe profile image
Ewloe

this isn’t all in your head !!!!

But often it’s how we cope with and manage the things that we encounter in life affects our quality of life.

During a recent conversation with my EP he explained why it’s best if I don’t have an ablation or pacemaker at present. Yes I have frequent bouts of ectopics, I also have none sustained ventricular tachycardia and some paroxysmal atrial fibrillation knocking about.

But nothing is risk free in life, they look at the burden that these things put on your heart and it has to be high enough for the benefits of any procedure to outweigh the risks. If there not then you need to find a way of managing the condition.

Life changing conditions can be difficult to manage and accept. Acceptance is a big issue and this is what you may need to work on. Anti anxiety medication may help with this and with discussion with your GP / cardiologist might be worth considering. Good luck.

Dear dani777

From reading I can see that you are still suffering the same as you did in your first post all those years ago,

So why is this?

I cannot believe that after all these years and that with all the tests that you have had and all the Dr/Hospital/Cardiology visits you have attended that nothing has been picked up.

I am sorry that you feel that because you are a woman that you have been treated differently than a man by the health service as most that I know treat people as human beings and not by their sexuality { my nurse/Dr/ head Cardiologist are all women but I see them as just highly trained personnel }

All through your posts your anxiety screams out and even though I am not medically trained , having a member of my family crippled with this { sister } and now mildly suffering from it myself after my heart happing, I can tell you that its symptoms can be and are real as they manifest themself in all sort of ways.

Whatever is going on needs answers, I think that you have had a few, that understandably you don't except, but it seems that there are more to find.

Take care, you are in my thoughts.

Milkfairy profile image
MilkfairyHeart Star in reply to

There is evidence that suggests there is an unconscious bias towards women heart patients.bhf.org.uk/what-we-do/news-...

in reply toMilkfairy

Dreadful in this day and age, totally unacceptable for any reason and immensely sad.

With the caveat that I’m not medically qualified. If, and I stress the if, the ‘only’ issue you have is ectopic beats, the accepted criteria for treatment of them is either a burden of 10% a day or more, or if you’re having runs of 3 or more ventricular ectopic beats in a row without a normal beat in between. The reason for this is because, as unpleasant as they are for those of us that have them, they’re generally considered to be a benign phenomenon. Even when you have an arrhythmia triggered by them, such as SVT or AF, doctors are only bothered about ectopics if you’re having loads of episodes (and not always then, from personal experience). I’m not saying this is the right attitude to take, just that it’s the accepted attitude within medicine, generally. They’re benign outside of two specific circumstances, so if neither of those apply, just get on with it. Add in the many biases that exist within the medical profession - for example being female, being overweight, having any history of mental health problems (even if decades ago), just to name three common ones - and you can end up in a situation where even with abnormal tests, you’re not taken as seriously as you should be. There’s quite a bit of research being done around medical bias at the moment, and they’ve now identified almost 40 different ones that commonly occur towards patients and negatively impact on care. I have SVT and should have been offered an ablation due to the frequency of episodes I was having, but because of my size at the time, I wasn’t given the advice or care for my condition I should have been. I suffered for 6 years as a result, before I made major lifestyle changes and managed to massively reduce the ectopics causing the episodes that way.

Unfortunately, those lifestyle changes don’t work for everyone, although there are a number of things that have been added to the known ectopic triggers in recent years, including certain medications, dark chocolate, and tyramine in foods like bananas and fermented products. Anxiety, stress, and lack of sleep are also proven causes: ectopics are primarily adrenaline mediated, so caused by the body’s release of adrenaline. It’s not in the literature, but ginger makes mine worse. I’ve noted that some women on here also cite hormones as a factor for them. I’m not expecting you to answer as it’s a personal question, but would suggest you privately consider if there could be a hormonal link in your case. I’d also just gently point out, though, that as it’s a muscle, doing less is bad for heart health, generally, although I do understand why you’re doing so. I suppose my own thought process with that would be if doing nothing makes no difference and it still happens just sitting in bed, then doing something is unlikely to make the situation meaningfully worse, but that’s just me.

Have you considered going privately? I’m still saving to do so, but more determined than ever after recently having 3 ‘mildly abnormal’ ecgs. All my previous ecgs over the years have been normal. I have a daily heart rate range from 32 to 170, occasional chest pain, and regular palpitations, along with slightly wonky cholesterol and borderline bp, but feel I’m being dismissed because I’m ‘too young’, in spite of the longstanding SVT. My family cardiac history is also absolutely dire, and my mum wasn’t much older than me when her heart disease started. However, if the private cardio ultimately concurs with the NHS, I am committed to accepting that. There does come a point where we have to accept the limitations of current medical knowledge and try to make the best of our lives in spite of symptoms and unanswered questions: due to recent deterioration of non-cardiac health issues I have, I’ve come to realise that, for me personally, the quality of whatever life is left ahead of me is actually more important than the overall length.

Starwish profile image
Starwish

Oh God, I have been having eptopic beats since about June, and I get very scared sometimes to tears. The ECG in a&e measures for only 30 seconds well if I do not experience any during this time it's pointless.I had a 24 hr holter monitor but it didn't pick up loads that day, it was a good day so what does that say ... It looks like I have been exaggerating.

Then last week I was told I had a high lipid protein (a) a genetic form of high cholesterol and have a "substancial high risk of blocked arteries"( can't spell the medical term)

My GP contacted the local hospital and a cardiologists recommend she reffers me to cardiology urgent referal.

My local hospital is not good rated and never has had a good reputation, I have opted for the Freeman Newcastle.

I called to see if I had a date for appointment, they said an urgent referal to someone else may not be to them.

I get the point, maybe I should have stuck to local hospital.

Anxious about this, when reading some of these stories I have lost hope because the medical profession only do treatment when things go wrong not preventative.

Anxious nit the word

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