Something is very wrong...

[Yochaved]

I have no idea what to do and would appreciate any advice.

I've always had episodes where my heart races up to about 180, once 200 BPM. No trigger, it is like a light switches on and off. I can be sitting at my desk and it has woken me up before.

I was told by a non cardiac doctor when I was in hospital for something else that it was paroxysmal SVT and that did seem to fit.

But he didn't document it

5 years ago I collapsed at work and was grey and unresponsive for about 15 minutes. They did compressions but I wasn't shocked. The hospitals thought my heart had briefly stopped, I had a 28 day monitor which apparently came back normal. Echo and multiple ECGs normal.

They said it was just a faint.

I'm still getting runs of fast heat beats, (yes, I hope my breath and blow, dunno my face in cold water, it works about 50% of the time) I think I'm experiencing ectopic as well. But I'm getting dizzy with them now and nearly blacked out in the kitchen this evening.

I can't face the thought of asking for help again because I'll look like such a numpty who is neurotic that she has something wrong when everything shows es up fine.

I'm completely stuck aren't I?

But you must ask for help! You need to go back to your GP, but is there any chance you could pay to see a cardiologist privately?

you have to see your gp.

I agree that you should push with the GP

Have you looked up atrial fibrillation?

Have you got a Garmin watch or similar? A friend used to have episodes like this and it was never during an official test, but then his watch started to pick it up and he could show that data.

The is a good idea. You can take the data in to avoid being brushed off.

It’s taken me years to get a diagnosis for my palpitations (and yes I can feel faint with them). Finally I got a 7-day ecg and they were picked up as atrial tachycardia. I’m still waiting for an appointment to see cardiologist though.
You should definitely go!

Do you have an Apple Watch or anything with an ECG function?

A family member had similar racing heart episodes that were never captured when the doctors did an ECG - he bought a finger pad 1-lead ECG machine thing (that takes a reading of your heart trace from your finger, similar to the ones on Apple Watch) and he took readings during his episodes and showed his cardiologist - they used his print-outs to diagnose SVT.

The collapse/ fainting part definitely sounds concerning and you should 100% go back to the GP and not care about being a nuisance to them! Episodic things like this are hard to capture, it might take lots of investigations, don’t give up!

Thank you all for your kind comments and help.

Yes, I could go privately but the trouble is that I'm not really sure what I'm asking for....I feel I've maxed out everything except an implantable loop recorder and I doubt they will be falling over themselves to offer me that.

The ECG idea is a good one...I can't wear watches so would love any recommendations for an alternative!

And thank you @CheekyBananaMuffin for your comments about them being difficult to capture. I never doubted myself but was beginning to think 8 look like an imbecile!

I’d suggest buying a Kardia device. It connects to your phone and then when you get the symptoms you can record an ECG which you can save as a PDF and then show to your GP (who may refer you on to a cardiologist if you capture anything) or you could pay directly for a private cardiology appointment and take those along.

I had this 2 years ago. I called an ambulance and went to the hospital one time as it just came out of nowhere whilst I was sat on the sofa. The GP said I should do that everytime so the doctors can see the attack in action. In the end though, because it would be a long wait on the NHS, we decided to pay private, it was £250 for a 48hr ecg then another £250 for consultation afterwards. They diagnosed an ectopic heart beat that leads to tachycardia. He prescribed beta blockers which I take daily. Whilst I have had a couple of episodes since, my heart rate on the beta blockers has never gone above 130 and always calms quickly, previously it would take hours to recover back to normal.

Definitely worth going private if you can stretch to it, for a speedy recovery if possible. I hope you get it sorted, it’s a really scary thing to happen and in the moment it feels like it will just keep increasing until you die! The medication for me helps me to get it back under control. Good luck!

Sounds very much like SVT which I have been diagnosed with.
I had an EP study to confirm and it's treated with drugs.
My instructions are that if the usual vagal manouvres don't work within half an hour, get to hospital.
I suggest you do that next time. Meanwhile ask your GP to refer you to cardiology. There's a very long wait in my area, at least six months.

I had an identical experience. I also take low dose beta blockers and episodes are now just a couple a week or fewer.

A family member had SVT. It was scary for her and for us. Eventually she had cardiac ablation and she’s pretty much back to normal now. Before the surgery she had to stay away from caffeine and alcohol or anything too stimulating. Go get it checked out and don’t take any risks

I second this, and mine was lent to me for a couple of weeks by the GP surgery, I didn't have to buy it - might be worth asking yours if they do similar. You just put your fingers on the plates when you're having an episode.

Im very similar. I have been referred to cardiology.. I've had an ultrasound of the heart to check its structurally okay. Ecg, 24 and 72 hour holter monitor. 24 hour blood pressure monitor. What they have found is that my blood pressure is low and then when my heart beats faster it drops even more making me dizzy and faint. I find illness, trauma, surgery, lack of sleep and hormone changes make it worse. Getting good sleep, drinking 3 litres of water and taking rehydration sachets makes it better.

I’ve cut out caffeine and alcohol too. Also tonic water (has quinine in and can affect the electrics in your heart) and pineapple I only have in very low amounts now as if I have too much I often notice issues that day. I very rarely have any issues now, perhaps once every 2 or 3 months.

Our trust routinely offer ILR’s so I’d push for one if I were you. I work in the cardiology department and also have a defibrillator for SVT’s!

As well as all the other comments , get your iron levels checked. I'm on beta blockers and high blood pressure tablets now, my resting HR was always 120.... Would also leap to 180. I started fainting, it had never happened to me before. It was PoTS (I can't remember what it stands for other than Postural and Tachycardia!) My heart was working so much harder as my hg levels were so low. It got so bad that I fainted due to a spicy chilli con carne ??! I narrowly avoided an iron infusion and am on the up with ferrous fumarate.
Get it all checked out. Nobody thought to check my bloods until I started fainting left right and centre. Good luck!

See your GP asap. DH has got atrial fibrillation and it's not unusual for his heart rate to suddenly go up to 150bpm. His cardiologist suggested an Apple watch with ECG function and DH sends him these if he's had a bad run.

He's had 2 catheter ablations as medication doesn't work, and he's booked in for a cardioversion later this month.

It's a bugger of a condition to live with, and you need a diagnosis if it is this. He is now in permanent AF but during the early stages he could go in and out of it with little warning. He's had a few syncope episodes alongside it.

Thanks everyone, especially the recommendation for the Kardia machine.

@AlgaeDreams , this isn't something that is going to surprise you but my haemoglobin was fine, but ferritin was 7. And 8 was told that was irrelevant, and was l anxious?

I bloody hate doctors. I went outside and cried when he said that.

Mine was diagnosed 8 years ago. The treatment of choice is ablation because it's a once and for all things but they couldn't do it for me.
It's very well controlled with calcium channel blockers.
Things that trigger it;
Infection
Illness of any kind
Trauma (physical, even minor injuries)
Stress

My cardiologist recommended a Kardia and said I could email readings to him although I was discharged three years ago so that's no longer the case.

Low ferritin gave me palpatations, breathless walking up the stairs, and tingling arms\hands. Get some ferrous Fumarate and get your levels back up.