want to hear something funny?

[Sleepybear987]

So I've been off here for a bit but I had a CT of my heart (privately, the NHS doctor wrote that they thought I was faking).

Turns out it might be gall bladder/liver causing my heart and chest pain.

Which is news to me but good that we're nearer to a solution. Because I'm now on tramadol until it gets sorted.

That's not the funny thing. The funny thing is that the cardiologist started getting defensive when I said that I had arrythmia because she said that "there's no evidence of that". We're still investigating. She said my heart is "structurally normal".

I then got a letter from her saying that I suffer from ectopic beats and that they can be debilitating for some people (which is SO vague?).

But aren't ectopic beats a form of arrythmia? And if I didn't have that, why put a looper in my heart?

Cardiologists are odd but whatever. I am going to say I have arrythmia (frankly I know my body better than her) and just focus on getting the liver issue fixed. But my god, what a mind field.

(Anyway, the sort of good news is, the tramadol is helping so much, I'm back at work. My mum said my mood is a lot better as well. The bad news is hearing that it could be my liver is scaring me because I researched sepsis/other complications from liver disease🤯. I have a doctors appointment on Monday but I'm just hoping they don't dismiss me)

[Tos92]

Hi Sleepybear987

I’m glad you’ve had the CT and your mind is a bit more at rest.

Gallbladder issues and abdominal issues can actually cause chest pain and mimic angina. So if that is what is causing it, at least you can be rest assured that your heart is doing okay.

The thing with ectopics is that they are considered benign. They’re only really treated if you’re having a large amount of them and using a loop recorder or a holter is the best way to determine that, this is probably why you have a loop recorder.

I can see what your cardiologist is saying though in terms of ectopics beats do not necessarily mean you have an arrhythmia. I have ectopics but as far as I know, I do not suffer from an arrhythmia.

Let us know how the appointment on Monday goes.

All the best.

Tos

[Sleepybear987 in reply to Tos92]

Kind of what I said to someone previously though, I understand the "terminology" but why am I sick then? I feel them. It's causing issues with my quality of life. So just because they're considered benign doesn't mean my issues are.

I just think there's more to it but because "everything looks fine", I'm not being listened to. So I'm going to continue to say that I have ectopic beats, a form of arrythmia because I have that documented until someone can be bothered to figure out why I'm feeling the way I am.

[Tos92 in reply to Sleepybear987]

I agree your symptoms need further investigation. Has your cardiologist said to you what the burden of your ectopics are? I think mine were less than 5% so they weren’t considered a cause for concern.

[Sleepybear987 in reply to Tos92]

They've not done anything bar just saying that I have ectopic beats. I have my looper and everything seems to be "okay". I think the thing is (and I know how these forums can work, so I want to say I'm not mad at you or anything like that), I'm just annoyed because if I'm complaining of chest/heart palpitations and I'm linking it to ectopic beats - let's say it's not, there's obviously a link to a similar condition with parallel symptoms.

I've not really had anything definite which I'm going to ask for, but because I'm "normal" the next appointments available to be are in 6 months. Or if I cause a fuss, I'm the annoying patient. The paranoid patient.

[Tos92 in reply to Sleepybear987]

I’ve been where you are. I was never able to get a diagnosis before my heart attack last year. Even after my heart attack, I continued to face challenges and my symptoms were dismissed despite having a major event. So I can empathise with you.

I don’t have anything but the ability to be able to advocate for myself, and so do you.

I hope you can get seen sooner so you can get to the bottom of this 🤞🏽

[BeKind28-]

Hello

It is great to read you are feeling better now enough to be able to go back to work

There does seem to be a bit of confusion from your Cardiologist but saying that I spoke with a Doctor today and felt confused after to which does not help does it sometimes I am left working it out myself as you seem to have done

Do not let them dismiss you on Monday it is your appointment maybe write a few things down you want answering and if you feel they are dismissing you then you can point out in a polite way this is how you feel but hopefully you won't and will get the most from your appointment which will be nice to see an update after you have been if you have time to let us know

Have a lovely weekend x

[Sleepybear987 in reply to BeKind28-]

Thank you so much and that's a really good point. I'm going to make sure that I'm always prepared.

Have a lovely weekend too

[BeKind28- in reply to Sleepybear987]

x

[Sleepybear987]

You see that's where you're wrong because my chest causes me to be stuck in bed to the point where I can't shower. Physically not mentally. These symptoms are real.

Like I said I know my body and know that something else is going on. I'm going to continue to say that I have ectopic beats and that's the only thing the cardiologist has been able to find wrong with my heart so far. If you were me, you'd understand.

[Yumz199725]

Aw sorry to hear about your ectopics. And about how your cardiologist was to you woah! How's your symptoms hun I noticed you have you a low heart rate so it's clearly not nothing. I had a similar experience with ectopics, I had an episode of them 2 years ago that took me to A&E cause I had the chest pain aswell but ecgs and bloods were fine so I began to think is this just phycological so I had them investigated more and I had holter monitor after holter monitor and finally one picked up ventricular Tachycardia so now I'm on verapamil been on it for a year now. I really hope they find what's causing them keep us updated hun take care x

[Sleepybear987 in reply to Yumz199725]

I'm so sorry you went through that all but I'm glad they found something! I've had a bunch of CTs and MRIs and they haven't found anything so I do wonder if it's something to do with my immune system or something like lupus. Something that causes ectopic beats and pain. But similarly thank you for commenting and sharing your story. It's stopped me from gaslighting myself because I keep telling myself that I'm "okay" or it might be something else. But I've been told it's ectopic beats and I'm in pain. Therefore the ectopic beats are calling me pain.

[Yumz199725 in reply to Sleepybear987]

Yeah it really screws with your mind! I thought this can't be phycological can it I mean I get light headed and the palpitations cant be nothing and it was something. Have you had a holter monitor recently? What symptoms do you have when you get them?? I really feel for you hun and glad I could help in some way. Keep us updated on how your feeling and how your appointment goes really hope they don't just dismiss you (I will add I was dismissed at first they were like oh you are a carer so that's stressful, which don't get me wrong it is very stressful but it isn't the course of my problem. It wasn't until I said I felt light headed with them they looked into the holter monitor closely and picked up the non sustained ventricular Tachycardia. Take care hun x

[Sleepybear987]

Yeah I had a lot of pain, I have pain from my gall bladder/liver area. And before all of that started, in 2020 I had ectopic beats and *whatever* it has caused me to be stuck in bed. Quality of life went down hugely. No other doctor has diagnosed me with anything else. So I'm just left with ectopic beats. My heart palpitations hurt like hell, my chronic fatigue is awful.

Maybe all of this could be my liver and you know what, that'd be sort of awesome, because maybe I'll find some form of normality. I know that in my heart of hearts (mind the pun 😆) they're two separate issues. Maybe I didn't make that clear, sorry!

[Smitty1956 in reply to Sleepybear987]

I have had gallstones for many years. That was first diagnosed in 1998. I was a poor graduate student—low wages, no insurance, two children. I felt that I could not afford hospitalization and surgery so the doctor I saw prescribed Prilosec. That drug helped in that I did not have gallbladder attacks after that.

With gallstones, one often has gallbladder attacks. I believe that these are the worst pain that I have ever experienced. I would begin to feel warning signs of an upcoming attack about 30 minutes before full force attack. An attack often felt similar to a HA with chest pain, but it also felt like a metal band was placed around my waist from my lower back and extending around to my stomach area—squeezing and aching. The pain was horrible! The doctor said that some people also vomited during these attacks, but I did not have that symptom.

The attack would last for hours and I would end up in a darkened room curled into a ball waiting for the pain to end. Even when it finally ended, I would feel wiped out for a day or two afterward.

After I got my degrees and a better job and health insurance, then I always said that I was too busy to have surgery. Plus, I was still taking the Prilosec and not having gallbladder attacks. Flash forward to 2023, and I am still taking Prilosec and still have gallstones.

My thought is that you would likely have some telltale signs of gallstones—-HA like chest pain, vomiting, or full out attacks. My problems/symptoms came on quickly—like flipping a light switch—-one day I was fine, then the next day unrelenting pain.

BTW, I do realize that I should probably still have my gallbladder out, but now I have other issues to deal with. So, I am trying to prioritize one issue after another. 😂

I hope that you are able to get everything sorted as quickly as possible.

P.S. They can see whether or not you have gallstones on your chest CT scan. I just had a chest CT about one month ago, and the report mentioned the gallstones, but noted no inflammation or infection associated with them.

[Sleepybear987 in reply to Smitty1956]

Gosh I am so sorry that you went through all of that (AND I know that feeling of dealing with one problem at a time) I'm glad you're in a better place!

Sending you so much love

(Side note: I've had a chest CT Scan and they've said nothing about gallstones...huh maybe it's leaning onto liver issues. I'm trying to not diagnose myself with stuff but at the same time, that might be a starting point! Thank you for that point. ❤️❤️❤️)

[Harvist]

Glad you feel a bit better. 4 years ago I had terrible chest and back pains and was rushed to hospital. Nothing was found but after several months of many, many different tests I was diagnosed with gall bladder problems. After gall bladder removal I had no more pains but the 8 months it took for that conclusion weren't fun.

Last year I had "the heart attack" and tbh the pains were never as bad as the gall bladder ones!

[Sleepybear987 in reply to Harvist]

Wait REALLY, the "heart attack" wasn't as bad as the gall bladder....

damn.

I think I might be ready for child birth/joking

But I'm glad they found out what was going on!

[Harvist in reply to Sleepybear987]

The female consultant who told me it wasn't cancer but swollen gall bladder, made the child birth joke. She actually said it can be worse than giving birth. I have only had the gall bladder pain so couldn't possibly comment....

[MummaSoap in reply to Harvist]

I had 3 wisdom teeth removed 3 weeks ago and the pain I was in when I came around just kept growing in intensity. I’ve given birth naturally, with no pain relief and (if I could), I would much rather give birth again than have my gum cut open to have a wisdom tooth out!! I said this to the nurse looking after me that night 🤣🤣

3 weeks on, the pain is better but I still can’t open my mouth properly or eat anything more than a soft diet and if I’m chewing for too long then the ache in my jaw becomes agony. 🙈

Sleepybear987 I’m happy for you that perhaps you’re now getting somewhere but sympathise with your frustration with trying to get answers - it can be a long and thankless task!!

Take care, please let us know how Monday goes.

Best wishes

Soap 🧼

[Sleepybear987 in reply to MummaSoap]

Hey Soap!

Coincidently my mum just had her wisdom tooth out and she said the exact same thing! My mum is quite stoic but I never heard her cry like that. /

And thank you for replying! I'll let you know how Monday goes, truthfully, if it doesn't go well; I'll grit my teeth and just pay for a private CT scan. I've left it long enough and someone needs to figure it out.

Speak to you soon!

[bludnut]

Hi, can you trust Doctors? Throughout early 2022 I suffered from chest pains so I went to our GP. He told me that it was Arthritis in my ribs, keep talkng the Tramadol. Later I saw him again and asked for an x ray, he refused me.He told me that at 80 what should I expect.I dug my heels in and got the x ray. He again said it was arthritis. A few weeks later while on holiday, I suffered masive pains in my chest. I saw the doctor on the ship, and after 3 1/2 hours later was told that it was Angina, not arthritis. So who can you trust? I don't know your age, hut it now looks that as you approach old age, treatment may not be given, because in my case I was 80 years old.

bludnut

[Sleepybear987 in reply to bludnut]

Oooof that's horrible! I'm glad that you finally got the right answer. Funnily enough I got the opposite issue. I'm 25 and because I'm so "young" no one thinks that I can suffer from any heart issues been though my grandma has had 3 TIAs (and she's just turned 60, her first one was in her 40s).

But you know what, I think I might ask for a second opinion. Even if it's something like an autoimmune disease because apparently lupus can cause heart issues and that's largely under-diagnosed. I think it's worth the try. Because my health comes first! Thank you for helping me coming to this decision.

[MONIREN]

I hope you get it sorted. My sister had open heart surgery a few years ago, all went well until recently., taken to hospital by ambulance numerous times until she got her gall bladder out last month, feels so much better. The pain was extreme and felt like a heart attack, no pain anymore. Hope you get some relief soon. Take care. Moni

[Sleepybear987 in reply to MONIREN]

Thank you so much and I'm glad your sister has no pain anymore!