Diagnosed with vasa vagal syncope

My daughter who is 16 has been suffering from vasa vagal syncope. She has had all the cardiac testing and and EEG to see if it was a neurological problem but they have all come back normal. No cause can be found for these vasa vagal episodes.

She has now had a implantable loop recorder which records what her heart is doing when she is unconcious and we have caught episodes but the results are all normal some recordings show her heart beating getting up to 170bpm when she is unconcious and others have shown a dip when she has fallen to the ground but I am told by a cardiologist that these recordings are all normal. These episodes where happening every 2-3 weeks but now she has started fludrocortisone 100microgram once daily and this has reduced the episodes a lot but she is still a collapse every 6 months or so. I don't know what to do because they are still happening. Please share your experiences I feel like she is the only one with this happening to her. Is vasa vagal syncope a diagnosis?

5 Replies

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  • My daughter started fainting when she was fourteen. It started with an episode every few weeks, increasing to sometimes 2 a day. After being told by our local hospital that it was normal for teenage girls to faint and that she would grow out of it STARS recommended Professor Matthias who prescribed midodrine. We have to pay quite a bit of money for it but it now gives her a warning of an episode and she can get herself down on the floor so she doesn't hurt herself. The only downside is the fact that we have struggled to find anyone locally to prescribe it. Good luck!

  • You are not alone in this, have they suggested Dissociative attacks this is what my daughter has, she blacks out with no warning on a daily basis, like you when these first started we were told it was her age, my daughter had a negative tilt table test and was refered back to a different neurologist who diagnosed her within 5 mins. I must admit if she was only having one every 6 months I would be happy as with medication we are still at 1-6 daily , hope this helps x

  • Hi thankyou for replying. I am under a cardiologist at the moment so I have not been referred to a neurologist. I am still confused though because I'm not sure weather Or not she have a diagnosis or not? If it is vasa vagal syncope then I feel that when we tell the college they won't take it serously and will brush it off as a faint. When I googled vasa vagal syncope and it comes up with a simple faint that can happen if you are dehydrayed etc but this isn't a simple faint because it happens more than the odd occasion?

  • fainting was ruled out ,in my daughters case, with a tilt table test as nothing changed when on it .the Cardiologist told us she was having blackouts and refered her back to Neurology, who had dismissed her with no tests the first time. The new one diagnosed her within minutes, all I can say is ask questions and if you haven't had a tilt table test ask for one x

  • The fact that the number of episodes have reduced since your daughter has been taking fludrocortisone is positive. Are you aware of the circumstances when she last collapsed. Was it very hot weather, had she missed breakfast or lunch that day? Low blood sugar, dehydration is often a problem for individuals who may have low blood pressure. STARS has a comprehensive reflex syncope (vasovagal syncope) booklet. Please email jenni@stars.org.uk if you would like a copy emailed.

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