What could be causing this?

[balletdiva]

My son is 15 and for months has been having a really high heart rate (between 140 and 180). He sometimes gets out of breath and has really bad chest pains from just walking up a few steps. A big exertion can cause this to last a few hours. His chest and upper body area is always tender to the touch. Worst of all he is constantly exhausted. Too exhausted to message friends and too exhausted to do all the fun things he used to do.

BUT it can be sporadic. The other day a friend invited him to kick a ball about which he did (albeit gently and there was more chatting than kicking) and he managed. As soon as they dropped him home though he completely crashed. Sometimes walking up the road leaves him gasping for breath, other times he’s fine.

All blood tests, scans and ECG have come back fine and we are waiting further a cardiology appointment, but have been told that is likely to be many months away.

In the absence of any input from the NHS (not blaming doctors, we just have to wait) does anyone have any ideas on what it could be? It’s completely debilitating and he’s due to start his GCSES year in September.

That sounds so worrying for you and him. I take it you’ve looked into what he eats/drinks, any other conditions/illnesses he may have, any medications?
Have you got a copy of his blood test results so you can check them against normal ranges yourself. I know some in here have said they feel awful but told their blood tests are within normal parameters. Some then find they are the low side of those parameters and feel much better after supplements.

Have his oxygen levels been checked, in the meantime, if not, that may be worth consideration.

Thank you for replying, we are desperate.

Blood tests have been checked by multiple doctors and we have checked blood oxygen levels ourselves with a finger monitor and all good except when he’s having an episode of chest pains/shortness of breath.

It’s awful seeing him like this when he should be out enjoying his summer.

He needs an angiogram and an ECG as soon as possible - horrified that he hasn't been sent for them already. He sounds a lot like a friend of mine who has angina.
I'm not a medical doctor btw, but if there are any docs here - could they advise?

He’s waiting for a 48 hour heart trace monitor

Thanks for the info. I’ll Google angiogram as I haven’t heard of it

Has his Troponin been checked ? His inflammation levels ? His cholesterol?

Have you considered POTS?

What is that

Does he drink a lot of energy drinks with caffeine in them?

I'm assuming he's never had glandular fever or Lyme disease?

Sounds like POTs. The heart rate increases when you stand but it’s harmless.

It’s good that the ECG was clear. If they were worried they would act fast, I had every cardio test within 2 weeks when my heart problem was found.

He’s had normal ecgs. Probably too going for an angiogram.

Holter monitor which he’s waiting for and an echo are best option.

That sounds worrying. How’s sleep diet exercise levels? Any chance of lymes?
look up spoons theory if a method for managing long term debilitating health conditions. For now I’d focus on day to day management while waiting for answers. Learning how to rest/preserve energy, prepare for difficult days. Some CBT exercises could help with the stress /worry.

Postural Orthostatic Tacchycardia Syndrome. My Ds developed this (after heart problems). It's basically a problem with the heart temporarily not getting enough blood when you stand up / move around hence the heart works harder & you feel rubbish (faint, exhausted etc). There are things you can try to help IF it turns out to be POTS. Personally I'd want all cardiac issues ruled out first but then my son had similar symptoms & he did have cardiac issues. Keep pushing for answers - my son has been ill for 13m now & it's awful for MH at that age too. Good luck!

SVT super ventricular tachycardia? My DH has this, for him it only happens occasionally heart rate suddenly goes up to 180, for years he was told it was panic attacks until he ended up in hospital and it was properly diagnosed. He's told that if he has an episode go to A&E ad say the magic SVT and they will sort him out, it can sometimes be difficult to get it back to a normal rhythm.

Sounds like this as mentioned by pp.

www.nhs.uk/conditions/supraventricular-tachycardia-svt/

Thank you for all the suggestions (and support, it means so much). He’s completely exhausted nearly all of the time and has also just told me he always feels cold (sunny and warm here but he is in his room with a heavy duvet over him). Heart rate can go below 100 sometimes but is often 130 and can easily go to 140/150 when moving and 180 when doing anything strenuous). Hot weather also causes extreme heart rate, chest pain and breathlessness.

Could also be asthma. It doesn’t always present with wheezing. Can also be chest tightness and breathlessness. The heart rate shoots up as the body attempts to compensate for the low amount of oxygen getting into the blood. The oxygen level only starts to drop when it’s getting tired of doing this.

Did they check whether he had had glandular fever? Although it can cause a terrible sore throat, sometimes kids get it with the horrendous tiredness. If all his blood tests are clear, it’s also worth looking at chronic fatigue syndrome/ME which can pop up at this age.

If there was any way I could go private and get some heart tests done I think I would just to be on the safe side. That’s not normal. Clearly something isnt right and needs diagnoses or medicated.

Yes he needs a 24 hour ECG and an ECHO. Not sure an angiogram will add much.

Do any of you have an apple watch? They are pretty good at monitoring heart rhythm and could give you an idea if he is having runs of SVT, which sounds the most likely explanation to me.

If he has a prolonged episode, breathlessness, feels like he is going to collapse get him to A&E.

He doesn’t need an angiogram at this stage. Please don’t give inaccurate advice @RosaMundi27. Has he had an echo done OP? He does need a continuous ECG (tape) which is already in the pipeline. He also needs to see cardiology, which is also in the pipeline, so not a huge amount to add at this stage unfortunately.

OP, depending on the wait for cardio, you may wish to see if there are any options for private consultation locally.

I know you've said blood tests have come back clear, but could he possibly have low iron and in particular low ferritin (you might be able to see the level on his blood results).
I had low ferritin and the heart rate increase and tiredness were the main symptoms. Also feeling cold was a symptom.
Definitions of what is 'low' are set but unfortunately many people (like me) suffer even when their levels are towards the low end of the 'normal' range. If I hadn't have found this out myself I still think I'd be suffering with no answers!

I obviously have no idea what is causing your son’s issues, but similar happened to me after a covid infection. One of the conditions covid brought on was POTS. I was diagnosed for this by my long covid clinic, but I think there are ways to do an at home LEAN test yourself in the interim. I also have low iron now which can sometimes make me excessively sensitive to cold - touching cutlery can be too much sometimes or even taking milk out of the fridge (have to hold bottle with a tea towel, use plastic cutlery etc), I had the electric blanket on a couple of nights in the heatwave. With the fatigue, trying to recognise the signs (not just tiredness, but symptoms) and having more rest than he thinks he needs can help not worsen the crash that follows (really really really difficult as naturally he’ll want to do things when he can). I hope you/he gets some answers and some treatment.