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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Heart issues being dismissed

58 replies

Myacheybreakyheart · 18/02/2022 00:17

I really sorry for using AIBU but wasn't sure what health topic to post in (if anyone can send me in the right direction I'll get it moved)

Have had problems with heart palpitations etc for a long time. Constantly dismissed as anxiety but after ending up on the kitchen floor in the middle of the night when DS was newborn I got referred for a 24hr ECG. Was never contacted so assumed all good. Later told I have an arrythymia. Nothing to be concerned about. All good.

Since then I get palpitations and cope fine, but know coffee or too much alcohol will send it crazy.

The last few days I've been having terrible palpitations. Two nights ago I really thought I was a goner. After it didn't calm down I spoke to GP who brought me in for an ECG (was on for about a minute) and said all looks good.

We have a history of heart problems in the family. My DGGM lost two siblings in childhood to rheumatic heart disease. She was unable to join part of the army in WW2 due to her heart problem (unsure what that was). All the women in our family have palpitations or arrythymias etc. My maternal GF died suddenly of a heart event a month ago.

I've only just found out it was rheumatic heart disease that my DGGM's siblings died of and have done some googling (I know!).

I suffer from psoriasis. Had two big flare ups after two throat infections (assumed tonsillitis both times but now wonder if it was strep having done a lot of reading during flare ups) which lead to 4 months of being head to toe. Have been seen my dermatologist but no scrapes done. Having looked online just now and the lasting and different patches on my wrists and elbows I assumed were eczema look very much like rheumatic fever rashes. Admittedly could just be eczema but equally I was astounded when I googled how similar they look.

Am I being ridiculous to put a load of different pieces together and wonder if I have in fact had strep (untreated - due to Covid) and that's lead to my heart worsening and left me with these raised scaly patches?

No doctors are taking me seriously when I speak to them about my heart but it's been ongoing for many years now and is particularly bad at the moment. It could be nothing, I'm aware, but it's enough to scare me, and given the history and my skin issues would it be unreasonable of me to really fight for an echo or something as opposed to a quick ECG when I'm not having an episode of the heart palpitations or whatever they are? I've had bloods done recently (not due to psoriasis) and vit B9 was low so on supplements but all was fine otherwise.

I'm aware this truly could be nothing, and I don't know if this limited ECG could detect anything and everything but equally I am a bit scared, and equally frustrated at being shoved off with anxiety as an explanation. I'm just after some advice as to whether I should be pushing/could be on to something/need to chill out.

OP posts:
peachgreen · 20/02/2022 22:06

Keep pushing. An ECG isn't enough to rule things out ime. DH had a normal ECG the night he was taken into hospital with what turned out to be severe heart failure caused by advanced dilated cardiomyopathy - so normal, in fact, that the paramedics didn't even want to take him in and it was only because we insisted that they did. Four hours later he was in ICU on a ventilator. I'm not saying that's what's happening to you (his symptoms were completely different) but just that an ECG isn't enough to give you a full picture of the health of a heart.

TatianaBis · 20/02/2022 22:08

When your palpitations were bad the other night, did you clock how fast it was going?

If it’s going very fast count how many beats in 15 or 30 secs.

apprenticewage · 20/02/2022 22:08

@Myacheybreakyheart I had the EXACT same symptoms and I have been diagnosed with high blood pressure and tachycardia...I am on meds and I feel so so much better now! However, mine is a direct result of the vaccine 😩 literally since the week I got it!

MrsBungle · 20/02/2022 22:11

I too recommend a Kardia. My dd has svt. None of the monitors from the hospital picked it up. Our consultant gave us the Kardia which linked to my phone. Picked up lots of episodes and she was diagnosed. She had a catheter ablation procedure just before Christmas to hopefully cure it. Definitely get a Kardia and show the traces to your GP/cardiologist.

TatianaBis · 20/02/2022 22:13

That’s why I was asking about the speed, it could be SVT if it’s sudden bursts of very fast heart-rate.

Original poster
Myacheybreakyheart · 20/02/2022 22:17

Thank you all so much! It's so reassuring to hear all of you say to push. I've just spoken to DH and he's said absolutely get it so I'm about to order a Kardia. Would a 6L be better or can the 1 lead do everything the 6L can? @TatianaBis they seem to go up to around 120 when I'm sat doing nothing, and also on waking. 120 seems to be the highest I go. I did try get back into running early last year but found my heart rate going up to around 170bpm with what used to be very easy exercise for me. It's put me off exercising now.

@apprenticewage I'm so sorry to hear you felt awful too but so glad you've got some help now.

@mrsBungle I'm so glad your daughter is getting the care she needs now. I'm feeling more optimistic now I can order that.

OP posts:
goldensilver · 20/02/2022 22:17

Advice I have heard before is that if you have a heart "event" to present at A&E/call an ambulance while it is happening in the hope that they can catch what is going on at the time on the ECG.
Hope you get to the bottom of it - sounds worrying and frustrating.

TatianaBis · 20/02/2022 22:24

120 resting pulse is fast, but it’s not super fast.

Abbamania · 20/02/2022 22:24

Following

Original poster
Myacheybreakyheart · 20/02/2022 22:26

@TatianaBis no it's not super fast, but it's the feeling of my heart jumping out of my chest coupled with the feeling of what I think is either extra or skipped beats that I find more uncomfortable than the actual fast heart rate.

@goldensilver I have wondered about doing this but it doesn't sit right with me for some reason.

OP posts:
PartyPlan · 20/02/2022 22:27

The 6 lead one gives more data as it takes a reading from the leg or ankle in addition to the fingers. In all honesty the cardiologists haven’t looked at my Kardia readings in huge detail, they looked for an overview of what was going on and then use their own 12 lead ECGs for anything official so I think the single lead will be sufficient.

TatianaBis · 20/02/2022 22:37

Ok so it’s more that it feels like it’s beating hard suddenly than it’s super fast.

Ectopic beats are actually normal (skipped or extra).

Have you tried cutting out caffeine including tea and alcohol?

Are you on any medication?

Katya213 · 20/02/2022 22:39

When there is a specific problem with the heart, it usually doesn’t manifest with palpitations and if it does, the palpitations will be there constantly, not come and go.

yikesanotherbooboo · 20/02/2022 22:40

The Kardia is an excellent idea.
Your GP will be able to see if your palpitations are the harmful sort or are benign ( which is very common and actually goes with your description).

TatianaBis · 20/02/2022 22:42

That’s not true at all.

TatianaBis · 20/02/2022 22:42

Post was to @Katya213

BonnesVacances · 20/02/2022 22:55

OP if you're hypermobile, the chances of it being PoTS is even higher as they are co-morbidities. And MCAS makes it the holy trilogy.

You appear to have ignored the posts saying to look into that and have gone in a different direction spending £100 on a machine from Amazon instead of pursuing why your heart rate increases >30bpm on standing. I'm not sure why this, maybe that resonates more strongly with you. But I think you're wasting your money.

Katya213 · 20/02/2022 23:16

@TatianaBis

Post was to *@Katya213*
I’m under cardiology, so is my daughter. Have been told this numerous times by a professor in cardiology and respiratory in one of the main cardiac units in the country.🤷🏻‍♀️
Crinkle77 · 20/02/2022 23:17

@goldensilver

Advice I have heard before is that if you have a heart "event" to present at A&E/call an ambulance while it is happening in the hope that they can catch what is going on at the time on the ECG. Hope you get to the bottom of it - sounds worrying and frustrating.
Yes this is what my mum was advised by her doc. She kept having these heart do's and had normal ECG so next time she had an episode she took herself off to A&E and she was diagnosed with atrial fibrillation.
TheVanguardSix · 20/02/2022 23:29

@Katya213

When there is a specific problem with the heart, it usually doesn’t manifest with palpitations and if it does, the palpitations will be there constantly, not come and go.
I had palpitations off and on for two weeks leading up to my arterial tear, which caused a heart attack, then cardiac arrest. Palpitations can be anxiety... harmless. In my case, my palpitations were telling me an entirely different story, one I've lived to tell.
TatianaBis · 20/02/2022 23:32

@Katya213

SVT, atrial fibrillation and atrial flutter manifest as periodic bursts of fast heart-rate (palpitations).

TheVanguardSix · 20/02/2022 23:34

And just to add... believe it or not, even some GPs can't properly read an ECG. I was in an ambulance being told by the paramedics treating me that my ECG was 'normal'. They decided, after going back and forth, to take me to A&E anyway... not the one with the heart attack centre nearby but another one. I arrested right upon arrival at A&E. I later learned that my ECG was anything but normal and the paramedics had misread it.

You really want to get a Holter monitor, OP, ordered by a cardiologist who will then read the results.

TheVanguardSix · 20/02/2022 23:36

OP, where are you based?

sashh · 20/02/2022 23:39

What you need is a 'cardio memo' which is a small er well it doesn't look like much, a box, but you keep it for a week and make a recording if you have symptoms / palpitations and then either take it back to the hospital or sometimes you can send a recording by phone.

An echo looks at the structure of the heart so won't show arrhythmias, well it can but only if you have the symptoms and it doesn't tell you which bit of the heart is causing the palpitations.

The GP's ECG is actually more detailed than a 24 hour ECG so don't dismiss it.

Rheumatic heart disease only occurs if you have had rheumatic fever, it usually effects the valves.

I'm not going to dismiss you but I will say some people are much more aware of their heart than others.

@Katya213 no it's not true, it might be true of your particular condition.

I trained for 4 years as a clinical physiologist specialising in cardiology and worked in a number or cardiology departments, I have read more ECGs and 24 hour ECGs than I could count and I have certainly reported on 24 hour ECGs where not only has the patient reported palpitations but you can see the corresponding arrhythmia.

I've also been part of the team in EPS studies where cardiologist induce an arrhythmia that the patient who does indeed get symptoms.

Flowersandhearts · 21/02/2022 00:30

Hi OP,
It's worth asking for a Holter test to check for arrhythmias, as it might be something like Wolff Parkinson White syndrome.

Panic can cause real symptoms of fast heart beats though.

Rheumatic Heart Disease would only really be relevant if you've had Rheumatic Fever. Strep infections (Scarlet Fever, tonsillitis) can cause Rheumatic Fever but it's quite rare especially if you've not had untreated tonsillitis or a case of scarlet fever (it's more common as a complication after scarlet fever).