Advice for daughter

[starweaver]

My daughter, 16, has been experiencing tachycardia. Other symptoms include, tiredness, feeling out of breathe, coughing intermittently (mainly when in bed), dizziness, feeling faint.

History: Had upper right lobe pneumonia in May ’24 which was treated with antibiotics.

I have been back and forward to G.P and on last appt, because she had then turned 16, she got sent to acute receiving unit to be checked over. They discharged after 6 hours saying they couldn’t find anything worrying, her ECG didn't show anything alarming, but they referred her to cardiology for a 24hr monitor. This was 4 weeks ago, and we haven’t heard anything back. I am so so worried, she was athletic, but has given up her Higher P.E, stopped playing and teaching netball, stopping gym, running and biking as she can’t manage to them any longer without her heart racing and feeling ill.

Her heart rate rises to 140bpm walking up our stairs at home, and walking to school feels like a struggle to her, so we now drive her most of the way. The last time she went to the gym, a few months ago, her bpm went up to 196 after 4 mins of exercise, which caused her to feel like she was starting to black out.

I would appreciate any advice, questions I should be asking doctors, tests I should be asking for. I feel any doctor I have spoken to has really minimised any problem. Thanks.

[HolTed]

I would be pushing for an MRI to look at the heart. Have they explored the possibility of myocarditis after her pneumonia infection? Only a cardiac MRI can diagnose this.

[starweaver in reply to HolTed]

Thank you, really appreciate your advice. They haven't done much to be honest...except telling me that they've seen a rise in young people presenting with similar symptoms after pneumonia or covid. I'll ask at next appt for further investigation.

[Lowerfield_no_more]

I suggest you talk to the BHF Heart Helpline nurse who may be able to give you a professional opinion

bhf.org.uk/informationsuppo...

[starweaver in reply to Lowerfield_no_more]

Thank you, really appreciate your advice. I emailed them and got some advice back, really helpful.

[fishonabike in reply to starweaver]

you can also ring them and spaek to them directly

[mjames1]

The 24 hour EKG monitor was a good first step. Since your daughter is aware of her symptoms, did she have any during the 24 hours? I ask because sometimes like when we take our car to the mechanic., it stops making noises for them only to return when we get home!

Jim

[starweaver in reply to mjames1]

We got results back late yesterday - recorded 'short episodes' of tachycardia and has been discharged as 'Sinus Tachycardia'. I feel like they dismissed the accompanying symptoms and fobbed us off. So we'll will head back to doctors to ask for a direct referral to a cardiologist. Her heart rate has effectively doubled from this time last year doing easy exercise like going upstairs or walking to school. Thank you, really appreciate your advice.

[Drawforaliving]

I second the pericarditis-myocarditis avenue to explore. It is also possible something genetic is going on. CPVT or the 6 other electrical heart problems. Just because nobody previously had the issue your daughter can be the first unfortunately.

[starweaver in reply to Drawforaliving]

Thank you, really appreciate your advice. We do have myocarditis in the family, so will revisit this conversation with doctor. It's so difficult to get help these days with the nhs.

[Callie456]

Hi, sorry to hear about the situation, it sounds very worrying.

I'd be requesting a cardiac echo and cardiac MRI, as well as a cardiac stress test and pulmonary CT. You need tests to look at the heart at rest, check how the valves and blood flow is going (echo). Also the heart muscle itself and more details that an echo can't see (MRI). Seeing how the heart copes with exercise/what happens in the heart when HR increases (stress test) and checking the lungs for clots or any damage from the pneumonia (chest CT)

I'd be getting referrals to a cardiologist and a respiratory specialist and go privately if you can (if the wait is long).

Wishing you and your daughter all the best and really hope you get answers as soon as possible so that she can receive the appropriate treatment.

❤️

[starweaver in reply to Callie456]

Thank you, really appreciate your advice. I feel like she should've been offered these tests, especially the stress test as it is triggered by exercise. I will discuss all this at our next doctors appointment. I have also enquired to a private hospital about pricing etc, it's futile trying to get appropriate care at moment with the nhs, which is really sad.

[Cookieisland]

I am a bit older, early 30s but I developed very similar symptoms after catching covid last year. I would get a heart rate of 180-200 with not much exertion, despite being quite fit and never struggling previously. I would get breathless and get dizzy with blacking over vision if I kept on going for too long. Climbing stairs in the house resulted in a heart rate of 140-150. It was completely out of the blue and very scary.

After some GP appointments I had a 10 day event monitor that showed SVT and I was referred to cardiology. I was fobbed off a few times with it being blamed on anxiety but I was adamant that it was not. It would rise suddenly when I wasn’t the slightest bit anxious.

I took propranolol for a year but recently I started having issues with it and symptoms returning so I had another appointment with cardiology and was given Ivabradine instead, which seems to be working so far.

I also had an echocardiogram through cardiology to check the structure of my heart. That was normal so it meant any other issues were generally not so much of a worry.

Hope your daughter gets to the bottom of it, don’t give up, I ignored my symptoms for a while and they just started getting worse. Good luck!

[starweaver in reply to Cookieisland]

Thank you, really appreciate your advice. I feel like my daughter is being fobbed off, and anxiety being hinted at as the cause. She is exactly the same as you, blacking out over vision and dizziness, heart rate is 140+ climbing our one set of stairs, and 5 minutes of exercise putting her up to 190+. She has given up all her sports (she was a very athletic girl). I think an echocardiogram or mri should be offered to her given how this is affecting her life. I will hopefully have more luck with our G.P at next appointment to have a proper cardiologist referral. Hope your symptoms continue to improve! It's such a scary thing to happen.

[Cookieisland in reply to starweaver]

Thank you! Its definitely trial and error but there are treatments out there so your daughter definitely shouldn’t have to suffer with it without any help.

I’d also recommend looking into POTS and IST. There could be loads of reasons for a fast heart rate and unfortunately seems like more and more people are getting it, but they don’t really know why it’s happening.

I was offered an echocardiogram as the cardiologist could hear a murmur, but no GPs had never picked this up before so definitely worth trying to get a cardiology referral!

[BaileyCat23]

this sounds similar to my experiences. I was diagnosed with SVT, though symptoms can vary. Please may I suggest purchasing a Kardia 6 lead. A cardiologist recommend this to me, I was able capture an episode and send this to the cardiologist who confirmed a diagnosis. It’s a small portable ECG device that links with your phone, and your daughter will probably have more luck capturing an event especially if symptoms are sporadic.

[starweaver in reply to BaileyCat23]

Hello, Thank you, really appreciate your advice. I will have a look into the Kardia lead. We have the app on her phone and she's just been using her iphone to take measurements, but I feel we may have more luck with G.P if we have a more 'official' recording of her heart.

[BaileyCat23 in reply to starweaver]

I totally agree, i found it incredibly frustrating when the loop monitors would come back ‘normal’ but symptoms are not always there, so the kardia is very handle to capture and record something which GP’s can use x

[fishonabike]

others have already given suggestions concerning next steps but my thoughts concern the period afer your daughter's pneumonia

she sounds like she was ver active and athletic and i wonder if she returned to full activity rather quickly after the pneumonia?

this is a serious condition which can leave one wiped out for months, yet these days the pressure is on to get back to full activity - this is particularly noticeabl in young active people who want to get back to their social and other activites and do not appreciate the importance of convalescence and slow, graded return to activity -

i speak from persoanl experience - as a teenager of 15-16 i had glandular fever and was forced to take 6 weeks off school at an important time academically and for my developing social life - i was keen to get back into the swing of things, despite my mother's attempts to slow me down - this was after a long period of repeated throat infections treated with antibiotics which i now feel had long term consequences

I feel this was partly responsible for my developing ME/CFS, which started to show up from my late teens unil it finally floored me in my early 40s

i know how hard it is for a teenager to see her friends live their lives while they are unwell and how much they want to get back to normal, but i hope you are able to help you daughter understand the benefit of rest and recovery - time spent resting is never wasted and this is something all professional athlete know - the problem is that it has not fitlered down to the rest of us

i hope you and your daughter find answers and treatmment soo

[Shahali]

I suggest ask cardiologist about Postural tachycardia syndrome (PoTS) is when your heart rate increases very quickly after getting up from sitting or lying down, often making you feel dizzy or lightheaded.

[bluemoon572]

I certainly agree with Shahali that her GP should refer her for POTS testing where the body fails to prevent her blood volume from pooling in her lower body when going from sitting to standing. The key is an increase in the heart rate of 30 beats per minute.

[Hidden]

This is really worrying in a 16 year old. Apart from checking out her heart and lungs, be sure your daughter has been checked for anaemia or hyperthyroidism. Hope you have a good GP. Keep going back until your daughter has answers. Best wishes