We are desperately searching for a cause

[Nc123]

My son is 20 years old. He had a seizure when he was 6 and it was determined to be due to an electroyte imbalance after 3 days of a migraine with vomiting. He recovered quickly. After 13 years of great health, being very athletic with only occasional migraines and sinus troubles that we have chosen not to treat (and by the way he played soccer frequently but was not big with using his head to hit the ball) he had a grand mal, tonic clonic seizure just before he was to wake up in the morning on Thanksgiving day 2009. His girlfriend was sleeping next to him and alerted all of us. He had a classic post-ictal state but was able to walk to the gurney. He remembers becoming alert in the ambulance. After months of testing every part of his body and brain and finding nothing wrong other than slightly elevated lipase and ALT levels, he has been told he has no health concerns. He refused medication thinking it was a fluke. On March 30, 2010 he had another one, same morning sleep situation. Basically same post ictal state and this time he began Keppra 1000mg twice a day. Still feeling great and having no side effects from the med, he became more active by riding a bike everywhere and enjoying it, losing some extra weight he had put on since being in college after finishing high school and the sports involved. Then another seizure, same situation as the other 2. The neurologist (we see one at UCLA) advised him to increase the Keppra to 1500mg twice a day. Still no side effects but yesterday was only one week past his most recent seizure and we are so paranoid of another one. He is keeping a really good attitude about the whole thing and has very close family with great support and is watched constantly which is somewhat annoying him but oh well. We are waiting for approval for a sleep study and ENT as those are the only things left to check. He has had 2 MRI's, EEG's, every type of bloodwork and abdominal ultrasounds, heart testing,etc. We have a hard time just accepting the symptom as a condition. That is the definition of epilepsy, 2 or more seizures. We think there has to be a reason and want to figure it out so we can fix this and make these seizures go away. Could it be a stage of sleep or sleep apnea (which his girlfriend says she has never seen him have breathing trouble in his sleep) or could it be the fact that he can't breathe out of his nose because of sinus problems or a slight bonk on the head he took while out hiking last October where he got slightly dizzy but was fine after? We are so confused. Any help or suggestions or thoughts would be greatly appreciated. By the way, drugs or alcohol are not a factor in this case.

[Endless]

Hi, Nc.

Welcome! There is a really large community of parents of people with seizures in here, and they are a deep well of information. I've learned a lot.

I'm sorry to hear about your son's seizures after so many years seizure-free.

I'm assuming they ran a blood panel checking all his vitamin levels, especially B? If any of them are even normal but on the low side it could be causing the seizures. Supplements are a good idea. Do a search in here on "supplements" and you'll get a huge number of posts, with a lot of information. A friend's baby was having multiple myclonic seizures per hour, with a "normal" blood panel with B12 and B6 on the low side. B supplements stopped the baby's seizures, and so far they haven't returned. She's 4 now.

People who have febrile seizures (seizures as a baby) might be slightly more likely to have seizures later in life, depending on their circumstances:

The prognosis for febrile seizures is excellent. There is no reason for a child who has had a single febrile seizure to receive antiepileptic drugs unless the seizure was unusually long or other medical conditions warrant it. Recurrence rates (the chances of having another seizure) vary from 50% if the seizure occurred before age 1 year to 25% if the seizure occurred after that age. In addition, 25% to 50% of recurrent febrile seizures are not preceded by a fever. In some cases, the seizure is the first sign of an illness (usually viral) and the fever comes later. The vast majority of children with febrile seizures do not have seizures without fever after age 5.

Risk factors for later epilepsy include:

Abnormal development before the febrile seizure
Complex febrile seizures (seizures lasting longer than 15 minutes, more than one seizure in 24 hours, or body movements during the seizure restricted to one side)
A history of seizures without fever in a parent or a brother or sister.

If none of these risk factors is present, the chances of later epilepsy are the same or nearly the same as in the general population; if one risk factor is present, the chances of later epilepsy are 2.5%; if two or more risk factors are present, the chances of later epilepsy range from 5% to over 10%.

http://www.med.nyu.edu/cec/epilepsy/types/febrile.html

The quicker and more completely you get your son's seizures under control, the better. It increases the odds that the seizures will be gone forever, even if that is on medication.

Still, it has to be really hard for him. None of the medication is a picnic. I'm really glad he's tolerating his well.

There are lots of young people in here that would be great support for him. Some of them are in high school or college, and they are dealing with medication, public seizures, memory problems, etc. Do you think your son might benefit from joining the forum, too?

You are such a great parent - very supportive, and helping him navigate all this. Hang in there. Things will get better for him.

[Nakamova]

Hi Nc123 --

It's possible that the causes in your son's case are a mix of primary and secondary triggers -- perhaps the initial seizure set the stage by lowering his threshold, and the migraines were the continuation. (Migraines are very close cousins of seizures and can fall on a spectrum with them). A combination of very minor triggers (such as minor head trauma, fatigue, stress, nuritional imbalance) may have combined to push your son over the "threshold" into a tonic-clonic seizure. Once that door is opened, it is difficult to shut it, no matter what the prior history.

[In my case, my best guess is that my seizures result from a similar "mix": I had a head injury when I was 5 that probably left a tiny scar on the brain. No seizures resulted, but very very occasional migraines. Flash-forward 30 years to when a combination of 3 days of no sleep and no food (except several diet sodas with aspartame) pushed me over the threshold, and I had a tonic-clonic. Since then, I haven't any migraines -- it's as if they "evolved" into tonic-clonics -- but I have had a number of tonic-clonics, the majority of them when I've been under-medicated. I'm currently stable on Lamictal, but it's unlikely that I'll ever be medication-free.]

Unfortunately, finding a primary cause is not always the key to finding a treatment, and the majority of epilepsy cases are ideopathic (that is, with no known cause). As a result, much of the focus ends up being on ways to treat and manage the symptoms, primarily through medication. Often finding the right medication involves a trial-and-error approach, and because seizure disorders can progress or change, the meds and dosages may need to be re-evaluated from time to time as well. It's possible that Keppra isn't the right med for your son. There are others out there that may be more effective.

I understand that it must be especially frustrating since all your son's tests have come up negative. However, while EEGs can be a useful diagnostic tool, they are not definitive -- there are many false positives and false negatives, and sometimes seizures originate too infrequently, or too deep in the brain to register on the EEG. There are plenty of CWE members who definitely have epilepsy, who have never had a confirming EEG.

I applaud you for being pro-active at exploring triggers for your son's seizures. Since electrolyte imbalance played a role in his childhood seizure, he may be extra-vulnerable to any such imbalances now (even without anything showing up in his bloodwork). So he should do his best to stay hydrated, with proper nutrition and blood sugar -- especially when he's exercising. He should consider taking vitamin supplements such as a B-complex, flax oil, and magnesium (magnesium can be especially helpful for migraines). Another place to look is diet -- a number of folks here at CWE have found that a special diets such as gluten-free have helped to reduce or control their seizures. There may be some sort of intolerance, allergy, or sensitivity that changing his diet may remedy. Reduced brain oxygenation can play a contributing role in triggering a seizure, so if it seems like your son isn't breathing properly that's worth taking a look at. Deep breathing exercises can help, whether through yoga or perhaps a sports inhaler.

Best,
Nakamova

[Nc123]

Sorry it took so long to reply, but I wanted to thank both Endless and Nakamova so much for your ideas and information. I am going to go through the paperwork again but I dont think they did a vitamin panel so I will have him ask at his next PCP visit next week. I'm having to fight the health plan to get an ENT referral so that's in progress. I'm just not confident that it's the medication that is keeping him seizure-free for now. I guess I felt burned by it when he had the seizure on the medication. It's so difficult because we can change things and do things differently to try to prevent seizures and depending on how the med is affecting or not affecting the likelihood of seizures, we will never know what is working and what is not. For instance, he sleeps on a futon matress on his floor (he likes the firmness) and his head was right next to his small refrigerator when he slept. I had begged him to move it to another part of his room and he finally did after the last seizure. Who knows if the EMF had anything to do with it and how will we ever know? Same with using Breathe Right strips while he sleeps now.
But it really helps to get information from caring people like you guys, though, thanks again.

[Nakamova]

Hi Nc123 --

The "not knowing" is so frustrating, isn't it? A big part of coping with epilepsy is coping with the guesswork involved in the treatment. Let me put your mind at ease about two things though -- the EMF from the refrigerator is too miniscule to have been having an effect on your son's brain. And the Breathe Right strips are more likely to help than to hurt. Anything that improves respiration and oyxgenation is a plus.

As far as having a seizure while on medication -- unfortunately, not all anti-epileptic drugs work for all people, and they don't always provide 100% seizure control. Even someone whose seizures have been completely controlled for a long time might have a seizure from an unusual stressor (like a high fever or infection for instance). Once your seizure threshold has been lowered, it's tough to raise to where it was before.