Can anyone give me any advice, so after seeing a doctor for my 14 year old son for something unrelated in September 2021 we were told he has a heart murmur, we have been referred to a cardiologist but still waiting for the appointment. (I’m trying to chase it without success) The letter that was sent for the referral states the murmur is a grade 2 systolic murmur heard loudest at the aorta.
My son since the beginning of march has been suffering with constant headaches which otc painkillers do nothing and feeling nauseous but never being sick - he wakes up with it and it’s there every day then he goes to sleep with it - 3 trips to a&e and 4 doctors appts we have finally had a brain MRI which thankfully is clear. My son has also said when doing things his legs and arms feel weak and like they don’t belong to him. The paediatric doctor at the hospital has said he thinks it’s migraines however my son has no other common migraine symptoms, now when we went to one of the gp appts he checked his heart and said he would have graded it higher than a 2.
My question is has anyone ever had these symptoms with a heart murmur as every time I bring it up with the paediatric doctors they seem to discount it.
Thanks
Helen
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Helly_1000
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Hello Helly. Yes, I've experienced symptoms similar to your son's, but I am a great deal older than 14! In my experience, headaches, feeling disconnected/light-headed and nauseous without being sick can be the result of very low blood pressure (BP), combined with a problematic heart murmur (weak valve/regurgitation). Personally, I need to be careful with what I eat/drink, because too much 'healthy' food that acts as natural vasodilators can have an unpleasant impact if it reduces blood pressure still further. Trying to stay upright and mobile with a BP of 89/50 is not pleasant in my experience! In my opinion, the resultant headaches do indeed mimic migraine.It seems to me that GPs and medical specialists are so focused on high BP, they pay little or no attention to the horrible impact of BP that is too low for comfort. Low BP is almost considered a non-issue by medics if it is constantly around the 90/60 range including just below that, even when unpleasant symptoms are otherwise baffling them.
If your son finds relief when he's lying flat and breathing deeply (but not fast), in my layman's opinion (I have no medical training at all) his problems could indeed be circulatory/heart rate/BP and not neurological, although the headache might well be the brain complaining about the lack of oxygenated blood its receiving. It's worth noting that BP is regulated by the kidneys assisted by the effort of the heart.
My advice is to pursue your son's appointment with the cardiologist with increasing vigour. I would expect the specialist to arrange for an echocardiogram. Given your son's young age, I think doctors should be assessing his case as urgent. Having no cardiology appointment yet when the referral was made in September 2021 is I think unacceptable.
Thank you for your reply bridgeit hope your ok.So at the hospital when checking his blood pressure it reads as all ok however the twice it has been done at the gp it has been slightly low 104/48 My sons headache gets worse when he stands too which again makes me think blood pressure, the doctors again seem to discount it. Our gp did ask whether an echo had been done yet and seemed put out that one hadn’t been offered. ECG’s are the only thing that have been done and they are normal.
I will get him to lie down and breath deeply and see if it has an effect.
Im disgusted that it’s taken so long for the appointment tbh, on the nhs website it says around 13 weeks is the average wait time - we have been waiting for 30 weeks so far!! I know there was a backlog with covid but surely things should start moving now.
Helen
Dear Helly-1000
Hello and a warm welcome to you, I hope that this forum will give you the knowledge and support that it has given me and many others.
I am not medically trained so I cannot answer your question, the only advice that I can give you is to re-contact your Dr or contact the Cardiology dept that your son has been given and chase up this appointment.
Your worry is so understandable and without answers that worry can only grow, you need to address those concerns at your surgery as I for one would consider them heartless not to help a mother worrying.
Thank you for your reply Hidden It’s certainly a worrying time, I am glad I’ve found this forum as I think it will be helpful to speak to people who can support.
Have the doctors considered or discounted rheumatic fever? Sometimes it is dismissed as growing pains in adolescents if it is very mild.Your son's condition may be something else, but I contracted rheumatic fever at age 13, had a few bilious attacks in the preceding summer, started to feel lethargic then grew so week that coming home from.school I had to walk backwards into the wind and alight backwards from the bus as my legs were losing strength, by the evening I could no longer stand unaided. As a consequence I was left with a heart murmur, have no idea what grade, but I recovered and lived normally for 19 years before a valve replacement while the heart was still coping. I didn't have a sore throat, which was unusual. My valve has been working happily for over 30 years now. I may be totally off course here but it is worth asking. Wishing you and your son well.
Sorry to hear you had a rough time and needed up with a heart murmur, glad the valve replacement worked and is happily working.No they haven’t mentioned it, I will certainly mention it when we go to the appointment. Thanks
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