Okay, we have a 17 year old son that started passing out over a year ago with seizures. He has two EEG's, two MRI's, two CT scans and all kinds of blood work and every single test keeps coming back normal.
My question is this. Is it possible that he could be epileptic and have a test come back normal? We are literally at our wits end here. Every single doctor has said it is, neurocardiogenic syncope. Would anti-seizure medicine help? If not please tell me what medicine would actually work. We are on our third medicine from the cardiologist. He is taking a Beta Blocker. He passes out and has convulsions every 3-3 1/2 weeks. If he feels it coming on and lays down for 30-60 minutes he is fine. Please someone help us.
neurocardiogenic syncope is more of a heart problem. although it can sometime lead to seizures. from what i understand, the origin is the heart, and as such, anti-seizure medication will probably be ineffective.
here's a good summary on the topic:
the article also provides advice on potential treatments.
incidentally, neurologists are unable to find a cause in almost 60% of seizure cases. most people with epilepsy undergo mri and ct scans as well as eeg's, and they all come back normal.
on a side note, many anti-seizure drugs have negative side effects. you would want to make sure it's actually a seizure before you put him on AEDs. some AEDs can actually exacerbate seizure activity. record what happens during these events. the diagnostic tests may not show much, but a visual analysis of the event can provide important information towards a proper diagnosis.
yes, he could. however, neurocardiogenic syncope is not epilepsy. it's a heart condition. it's symptoms just so happen to mimic those of epilepsy, and hence, it's often misdiagnosed as epilepsy. if he truly has neurocardiogenic syncope, then i don't think anti-epileptic drugs will do anything, since the origin of the condition is in the heart and not the brain. what you described doesn't exactly sound like seizures to me. if someone senses a convulsion coming on, they usually have a convulsion. its typically an all or none event. it's possible that he's having an aura (warning sign before a seizure), but even then, most auras last under a minute, and he wouldn't necessarily have to lie down for an hour for the symptoms to go away.
when he has these convulsions, does he go unconscious, muscles stiffens, shakes, etc. or does he just fall to the ground and faint?
he has told us he goes in and out. I asked him what he meant by that and he said, "it feels like a camera lens, it zooms in and then out."
If he doesn't lay down then he will faint and then his body stiffens, and shakes. When it happened at band camp his band director said he fell to his knees and then went backwards. His arms were straight up and his hands were closed. When it happens he will fall asleep and then within 30 minutes he is up walking around and ready to go again.
To me if he is epileptic then the anti-seizure medicine will stop the convulsions. If it is just sinus tachycardia then it won't stop the fainting.
it seems as though his fainting spell turned into a seizure possibly because not enough oxygen was reaching the brain. people with seizures don't usually take 30 minutes to recover - it's more like 2-3 minutes (even from a grand mal seizure). this also makes me think it didn't originate in the brain. if not enough oxygen is getting to the brain, even the addition of anti-epileptic drugs will not stop the seizure.
let me provide some more information: with synocope, the fainting spells begin with muscle weakness, sweating, nausea, a loss of consciousness, and then falling to the ground. some people also show jerks or shaking movements after losing consciousness. this does not mean the person is having a seizure, but rather, a convulsive syncope. after the fainting spell, consciousness is regained quickly.
in contrast, people with seizures lose consciousness quickly, and the person remains unconsciousess for a longer period of time (i.e. with syncope its a few seconds, while with seizures in can last a few minutes).
people with syncope are usually pale and breathe heavily. conversely, those with seizures have a blue complexion.
people with syncope have a limp muscle tone, while those with seizures have a rigid muscle tone.
tongue biting and loss of bladder are rare in syncope, but common in epilepsy.
and, in contrast to what i said in my previous post, people with syncope usually recover quickly and are not confused, while those having a seizure are confused and take a long time to recover.
pain and headaches are COMMON after a seizure, but not a syncope.
taking all of this into consideration, he has signs of both a seizure and a fainting spell, moreso a fainting spell though, particularly because he feels the need to lay down before the episode. if its syncope, anti-seizure medication will not do anything.
okay, when he faints he is white as a ghost. The other thing if he can tell he is about to pass out and he lays down for 30 minutes it goes away. Where if he had epilepsy it wouldn't go away at all. It doesn't take him long to recover. I say 30 minutes but, actually it is within minutes. Being the mom it feels like 30 minutes. Plus, the other reason they think it isn't a real seizure is typically people with a true seizure will sleep for a very long time afterwards. He falls asleep after his body isn't shaking anymore. But, once he wakes up he is fine. He has never ever bit his tongue and he has never ever lost control of his bladder.
We went today to see his regular doctor and I talked to him some more about it. He said, "he isn't having a true seizure." Basically he explained to me about how a person who has a true seizure sleeps for hours on end. He doesn't do that.
Now they are going to add Sudafed along with his beta blockers. We are going to try that for a month. Then go from there. His doctor got the report from when our son wore a heart monitor and he had one of his syncopal episodes and his heart beats extremely fast during it. Which the Cardiologist explained to his doctor that his heart is misfiring.
My adult (23YRS old) had the same problem growing up. His heart was fine but they couldn't figure out the reason why he was passing out. Sometimes it would be after an emotional upset(visiting someone in the hospital) but other times it could be for no apparent reason. (having his eyes dialated for an eye exam, riding in the car with friends after basketball) When he was in his late teens we went to a different Cardiologist. He tried a long shot, he tried a version of a tilt table test. He had him lean against the wall with his shoulders and his feet about 10 inches from the wall with his knees locked, legs straight.(he had a blood pressure cuff on him, to check his vitals during) Sure enough, 9 minutes in, his stomach started to hurt, he started sweating and he passed out. The dr. said it was important to know whether it was his blood pressure or pulse causing the fainting because it would tell which med he should be on. I didn't really understand. Anyways, he called a specialist friend in a nearby city who does the accual tilt table tests and got him an appt. with him to confirm his results. Come to find out, it was his blood pressure and they wanted him to take a beta blocker my son didn't want to take them because of so many side effects. So they told him to make sure he stayed hydrated, no caffine,( he lived on Mt Dew, coffee), gatorade was the drink of choice the Dr. said and he had to have salty snacks with him. (pretzels, etc.) They suggested he take salt tabs preferable with potassium. A new study showed it worked as well as betablockers. It seems to have helped. He hasn't passed out for unexplained reasons for 3 years. ( he almost passed out when he had his eyes dialated recently, they had to lay him down) It's something to consider for your son. Make sure he's well hydrated. I wouldn't take salt tabs/potassium with his beta blocker without checking with a pharmasist or his Dr. I wish I knew what kind of specialist it was that he went to for the tilt table test. I know the city and hospital but I can't remember his name, sorry. This Dr did research on fainting, he was really good. That's my experience. I don't know if it's any help. I know its hard as a parent to see your child suffer and not be able to help him. My heart goes out to you. By the way, my youngest son who is 7 has had two fainting spells now! Here I go again!! Take care, Diane
so far the Sudafed is working. We have gone over four weeks now without him passing out. After trying a third medicine from the Cardiologists his regular doctor suggested the Sudafed. He told me it was something they use to use back before they had all the other medicines. It is working. Our son drink Gatorade every single day. He eats salty snacks. He drinks caffine free sodas b/c we were told no caffine at all.
Now your son is older how long did he go through it? We have been told by the Neurologist, Cardiologist and his regular doctor that he will out grow this.
I'm happy to know the sudafed is working for your son. Is it something you have to use with a beta blocker?? I'll tell my son about it, if he has any more problems. His first fainting spell happened when he was 8 at a hospital, so I wasn't that concerned. It happened again at 12 or 13 when he got his eys dialated for an eye exam, thats when he went to his first cardiologist. It happened off and on for the next 6 years or so until we to another cardiologist and he did the other tests done. He's had I think we counted 10-12 or so fainting spells in all. He hasn't had one for 4 years now. I think he is still very prone to them but he knows now what to do now to avoid them. He's had a couple of close calls in 4 years,but no accual fainting. They explained it to me this way. A fainting spell is a vasal vegal response, the nerve that goes through your stomach, heart and brain. He just happens to have a very sensitive vesa vegal response. When it triggers, his heart races so fast, (it over reacts) until it bottoms out and his blood pressue drops dramatically and he faints. Thats why they give them the beta blocker, it prevents their heart from racing and they don't pass out as easy. But I always wondered, most kids' blood pressure is already low, won't the beta blocker lower their pressure more, which could lead to more fainting? Is that why they give them sudafed with it? I know sudafed raises blood pressure. I'm curious about that. Is your son just taking sudafed now? Or does he take it with a beta blocker? I'm sure the drs are right that he'll grow out of it. My son seems much better after he was 20. His worse time was in his teens. Remember he didn't take the beta blocker either, so he probably would have been better much sooner if he had taken it. I hope your son continues to do well on the sudafed. Hang in there, I know it's tough for us moms to see our kids sick!!
my son also has seizure like activity when he has a fainting episode. he does the convulsing and jerking. he has had every test known to man and every test came back normal when we saw the neurologist. however, the cardiologist explained that the seizure like activity can be brought on as an automatic response from your blood pressure dropping and that it's not an actual seizure....what does your cardiologist say about this? my son is on a beta blocker and also takes sudafed 3 times a day (it works as a constrictor) he did take a water retainer which worked well have you uped his salt intake? i've noticed sports drinks have alot of sodium in them. hopefully it will get figured out my son is 6 and i'm completely frustrated!
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