Any young athletic kids with neurocardiogenic sycope?
My daughter out of the blue, starting having sever symptoms at 5 (now 7). She would just drop and have a seizure and turn anywhere from grey to blue. One time at the doctors office she had a really bad back to back episode (resulting in a tonic/clonic seizure) and her heart rate was only 10 to 20 bpm. She was first diagnosed with epilepsy but I was convinced she had NCS and took her to Children's Hospital Boston where they admitted her for long term monitoring. She had two mild episodes there and they were able to rule out epilepsy and heart arrhythmia altogether and formally diagnose her with NCS (only took two years!). We've been able to manage her symptoms with lots of gatorade and salt. I've read that athletes are prone to NCS and she is very athletic. She does competitive gymnastics and spends 6 hours a week in the gym. Her heart rate at night gets as low as 49 bpm. Some cardiologists say it's the conditioning but others have said that is still too low. I've been trying to find a sports medicine doctor that also knows about NCS but no luck so far. Just wondering if anyone else is in the same boat. Thanks!
We do have other parents on the forum, and I know some kids have been *active* before coming down with a form of dysautonomia, but I'm not sure whether any were as athletic as your daughter. With the holidays being this time of year, it may be a bit before any of those folks see your post and respond, so please don't be discouraged if you don't get many responses immediately. We'll try to bump you back up toward the top of the page if your question starts dropping off the front page so they'll see it when they're done doing holiday stuff with their families.
If you haven't already, in addition to talking to the folks here, I would also recommend that you reach out to the people on DYNA if you haven't already.
They may also be able to connect you with some parents who can give you some insight.
I'm so sorry to hear that it took two years to get a diagnosis. Unfortunately, (as I'm sure many of us can attest), that's not uncommon in trying to get a diagnosis for a form of dysautonomia. It's just not a well-known or well-understood field of medicine. This also accounts for the fact that these conditions are often blamed on "deconditioning" in one case and "conditioning" in the next; one might presume that this is symptomatic of the fact that they just don't have a good handle on dysautonomia yet. Many specialists in the field admit as much: the causes of dysautonomia just have not been fully elucidated by researchers yet and are not fully understood. In individual cases, sometimes the cause can be found, and sometimes it just cannot be winnowed out (yet).
Have her symptoms completely resolved now with just the salt- and fluid-loading? Or are you looking for other suggestions on what you can do?
I don't know if you need anything like this, but if she's still having symptoms you might be interested. We do have a dysautonomia tracker available here on our site to help track symptoms daily (you can also use this to share information with doctors by printing it out) as well as other trackers that may be relevant to patients with dysautonomia/NCS:
You may also want to take a look at our Health Pages if you haven't done so already and are looking for more reading material on NCS or dysautonomia in general (though I imagine if you were seeking the diagnosis like that, you've already read quite a bit):
I was very athletic before I was diagnosed with POTS but I also have vaso vagal syncope. When I started getting sick I was playing at least 10 hours of soccer a week. I don't know if this same thing applies to NCS. I have not been able to return to soccer due to this.
I don't come on here very often, but I thought I would respond. My son is 15, he was diagnosed with POTS in Nov 2009 after 1 year (had a great doctor who wouldn't give up) of noticeable symptoms. Looking back, we think he has suffered with it for at least 7 years. He is very active, even still. He played on a soccer team for years, skateboards, surfs, acts in theater productions, etc. The big difference is that it takes a while for him to recover. His doctor insists that he remain as physically active as possible.
We also have been dealing with the seizure problems. His has increased significantly and they haven't ruled out epilepsy yet. He also suffers from bradycardia/tachycardia which his cardio says it is because of POTS.
I just read you message. Sorry to hear about your daughter. I am also atheletic and my resting heartrate was in the 50 range. Dehydration and other triggers like vasovagal caused a syncope with me which is a long story. I ended up with a pacermaker. My HR is now 60. It does not do a thing to cure the syncope caused by dehydration, etc. So if a doctor suggests that 49 bpm is too low and suggests a pacermaker, I would back away quickly.
If I might ask, what is your diagnosis? Vasovagal/neurocardiogenic syncope, or something else? I'm sorry to hear you've had such an unsuccessful experience with the pacemaker. The research on pacemakers as a treatment for dysautonomia shows varied success rates depending on which diagnosis they are trying to treat (which is why I asked about your diagnosis). At any rate, I hope you're getting some better treatment options now and making some progress? Are they addressing the dehydration?
Sorry if I'm asking too many questions. Feel free to disregard ... not trying to be nosy or anything, I'm just wondering if there's anything that we could suggest that might be of help to you. I feel bad that you've undergone an unsuccessful treatment. :-/
My 16 year old son was recently diagnosed with dysautonomia, but no "sub-category" We are still in the early stages of learning about this. He has been ill for months, seen 3 neurologists, 2 cardiologists, 2 pediatricians, lots of tests, etc, just got diagnosed less than a week ago. He is a basketball player and I think all this started 3-4 years ago - he fainted at school, started getting lightheaded when rising from a seated position, and started getting migraines from basketball. This past spring he really increased his level of exercise to be the most in shape ball player he could be - more migraines, tried a new migraine drug in the fall (a triptan) and boom! his life just fell apart - lightheadedness all the time, double and tunnel vision, near syncope numerous times. His coach had to lay him down on the floor of the locker room during varsity tryouts as he was worried that he would pass out. He was working out and training about 15+ hours per week and started falling asleep on the couch before dinner - could not rouse him. He is orthostatic and has tachycardia, but all the cardio tests show his heart is normal. So here he is with this new diagnosis and drinking gatorade and using more salt. He cannot play ball and gets tired and lightheaded going up the stairs at home. He is having lots of cognitive issues too, words bother him - reading and trying to figure out which word to use, plus stuttering more. School has been a real challenge - too lightheaded and tired. He has gone from an A/B college prep kid on Varsity basketball to missing a whole quarter of school (and still unable to go consistently) and dropping two tough classes that he can not possibly catch up in. Not sure who we are seeing as a follow up to this diagnosis from the ped cardiologist - there is a POTS specialist in our area so I will try to get my son in to see him. Good luck with your daughter - I hope she makes a speedy recovery and is able to play again soon!
Hi. I was also diagnosed with dysautonomia and POTS after being a very athletic girl my whole life. I was a gymnast ever since i was age 3. Now i am 21. My symptoms began around age 16...unusual fainting...then became worse. I was very very very active gymnast working 16 hours a week. I went to a pediatric cardiologist when i was 16 and he prescribed me Florinef to keep the salt in my body. Ask your doctor about florinef. I do see a trend in alll POTS patients...very very active atheletic lifestyle...then one day they start fainting. Hope this helps.
My daughter who is 15 was recently diagnosed with NCS. She is a tennis player and is really struggling with her athletic conditioning. She is trying to drink more water and take in more salft. Does the Florinef help your ability to compete like you were used to? I hate it for her- Everyone on her tennis team has no idea that it is a medical issue not a lack of laziness and inability on her part. Friday, she almost passed out running sprints and do footwork exercises. It is embarrassing for her!
If you haven't tried it yet, you might try sending a private message to sonikaur to see if you can get a reply that way, since it's been some months since they posted on here and they may not be checking this thread. Also, you might try posting your question as a new question as there are others who have fainting problems on the board who might want to dive in and give an opinion.
Florinef is given to raise blood pressure and it helps some people, while others don't tolerate the side effects well, etc..
Tennis is a very active sport for someone suffering from NCS... did her doctor say it is okay for her to continue in that sport? I'm sorry she is having such a rough time of it and hope she will be able to share with the team about her NCS and that the team would support her as friends!
My son, 15, a basketball player and A student has been "sick" for 6 weeks and was just diagnosed with dysautonomia. We are just back from the paediatrician. He sound so much like your son I had to post a comment. How sure can we be that this diagnosis is correct? He does not get dizzy, but everything else seems close as we read the Dys symptoms, except the big heart fluctuations, his are not so severe. Is your son still playing ball? Is basketball a sport our son won't be able to participate in? How do you support their schooling when they are not in school? So many questions. Anything you can add would be much appreciated.
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