heart murmur, undiagnosed lightheadedness and exercise intolerance (near syncope)

[lucy189]

My 16 yo son had a heart murmur at birth.We were told that it closed before his 1st birthday. 3years ago he fainted and then began to get migraine headaches after strenuous exercise. He also got lightheaded occasionally when standing. This past spring he really increased his exercise regime and got more migraines. An EKG was done but was read as normal. This fall he really increased his exercise and began to be extremely fatigued. In early October, he got a migraine and took Axert. He had been taking Doxycycline at this time for a year for acne. He developed blurred vision, eyes crossing and lightheadedness.The docs felt the new symptoms were an intractable migraine variant and told him to take a double dose of Axert.  He got worse. He had a short cardio appointment where the doctor told him to drink more and he was fine..The doc did say the murmur was still there. He tried out for basketball and all throughout the two hour very strenuous tryout, he had tunnel vision with lightheadedness and then at the end his vision whited out and he was extremely lightheaded. I took him to the ER where they ran some tests - carotid ultrasound and chest xray. The next day he had an echocardiogram and he did a cardio stress test and went far into the 5th level and then got lightheaded and they stopped the test.  At that point after 5 mins of rest they got a reading of 240/60. The cardiologist called me the next day and said that it was completely normal. We then saw a migraine specialist who said this is not migraine and who then said we should go back to cardio. He is orthostatic on rising for this whole 3 months.  He is too lightheaded to go to school, gets very fatigued with any activity. It is very hard to rouse him in the morning and he has some cognitive issues with this related to language and speaking. Could his murmur have "reopened" or something?  Could the Axert have triggered something? We have another cardio appt with a new doc, in 3 weeks.

[lucy189]

Dr. Boris,
Thank you for the reply. I will discuss POTS with the pediatric cardiologist at his appt next week.  An adult friend of mine said that he has very similar symptoms and he had a TEE as the regular echo did not show anything and the TEE showed the valve where his murmur was had torn and he had to have surgery to repair it.  Another friend told me to ask about Marfans as my son had an inguinal hernia at birth, needed a palate extender as a child, has a long arm span, has scoliosis, stretch marks and very flexible joints, along with a paternal cousin who had a lung collapse at age 17.  Yet another friend said that his daughter had the same exercise intolerance symptoms and it was a-fib and they had to perform surgery to fix the electrical "branching".  Based on the stress test that my son did after the basketball near-syncope episode - his BP was 240/60 after 5 minutes of rest at the end, so I do not think the exercise lightheadedness is due to low bp.  Do you think a Holter monitor would be of some value at this point?  He has issues at night as he wakes up sweaty most nights - we live in Vermont and we keep it cool in the upstairs bedrooms and he does not have too many blankets on.  So many strange symptoms...

[Jeffrey R Boris, M.D.]

Dear Lucy,

There are several things going on here, including a heart murmur, exercise associated headaches and dizziness, fatigue, and difficulty concentrating.  Except for the murmur, these sound like they could be associated with postural orthostatic tachycardia syndrome, or POTS.  If he has a normal echcoardiogram, the murmur is likely an innocent murmur (assuming that the study was performed by a pediatric cardiologist).  You may want to look at two websites, www.dynakids.org, and www.dinet.org, to see if your son has more symptoms consistent with this.  Either way, exercise-associated dizziness may be due to some decreased blood pressure at the time of the exercise; unfortunately, a BP was not obtained at the time of the event.  I would recomend that you return to your cardiologist and discuss POTS as a possible etiology, or try to find a practitioner who is more familiar with it to help with possible diagnosis.

[protea]

I hope the new cardiac dr can give you some answers.PLease let us know what happens.I am not familiar with some of those terms.

[lucy189]

I just got a copy of my son's ECG performed when he was 9 days old.  It was stated that it was normal in the report, but the text at the top has all sorts of phrases like Abnormal ECG, supra ventricular tachycardia, left posterior fascullar block, acute pericarditis,  inflected t wave, sinus tachicardia, st and t wave abnormalities, possible anterclateral ischemia I-C, 1 + Mv T wave in lead.  I guess I should just wait to see our cardiologist since no one is answering this, but I would like to have some questions to pose to her and would like to get on track to find a diagnosis to be able to get my son well.