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New to the forum - my son has epilepsy
Wed, 02/07/2018 - 22:44Topic: New to Epilepsy.com
Hello! My son was just diagnosed with epilepsy a month ago. He is 14 years old. First starting getting migraines around age 5. Could never pinpoint the triggers except that if he changed his sleep pattern too much he would get a migraine. Only sleep and ibuprofen was needed and he would be fine a couple hours later. About 2 summers ago he had a migraine and a seizure. Was totally out of it so I took him to ER. They did an MRI and it was fine. We went to doc who sent us to pediatric neurologist. That neurologist did NOTHING. Basically he said to just keep letting him sleep them off. This past summer we were on our way home from Chicago to Michigan and my son was sleeping in the back of the van with a migraine. Next thing I know I’m watching in the rear view mirror him having a major seizure. My other son found the closest hospital and we went to ER. A nurse had to come get him out of the car. He was unrespsonsive for about an hour. Was fine a couple hours later and we went to home. Went to a new pediatric neurologist. EEG showed some signs of concern so we scheduled an overnight EEG. Now docs are saying its epilepsy. I’m trying to wrap my brain around the fact that it was epilepsy the whole time? Or was it migraines that caused seizures. I’m thinking all those times I sent him to bed and he could’ve been having a bad seizure. He’s now on Topimax 50mg twice a day. Hasn’t had an episode since the major one in Aug 2017. Has had maybe one headache since then too. It’s hard to know because they were never consistent or very frequent. Hoping for the best. Any advice????
Comments
Here’s a page noting some
Submitted by Amy Jo on Wed, 2018-02-07 - 23:54
Here’s a page noting some common dosinghttps://reference.medscape.com/drug/topamax-trokendi-xr-topiramate-343023
There is a connection between
Submitted by just_joe on Thu, 2018-02-08 - 15:15
There is a connection between migraines and seizures. Research the different types of seizures and you will find head aches and migraines in some of them. Advice --- Follow the docs advice and the prescriptions.. 2 times a day does not mean just anytime morning and night. It means as close to 12 hours apart as you can take them. That way the therapeutic levels stay consistent and that keeps helps keep the breakthrough seizures from happening in the case a dose is taken late or even missed.Amy Jo does have good information and this web site is a place you can come to get information and research
While that first neurologist
Submitted by Amy Jo on Wed, 2018-02-07 - 23:23
While that first neurologist could have done better, don’t beat yourself up over the past. Focus on the now. Right now things sound pretty good. How much do you know about what types of seizures he has? I’m not familiar with topamax dosing but that seems like a low dose. The times that topamax has been suggested for our child, I’ve opted against it because of the common side effects (adverse cognitive impacts) and of the three drugs we’ve tried, always go to highest setting or have issues with side effects where child can’t tolerate a higher dose. Topamax at lower doses is also used for treating migraines and weight loss. They don’t know the connections between migraine and epilepsy but it’s pretty clear knowledgeable people suspect there’s something there - suggestions include they share some genetics, something about the processes matter, or are on some kind of continuum. Lots of unknowns in epilepsy still. Our child with a genetic form of epilepsy (which isn’t in our families, n.b. genetic doesn’t mean it always runs in a family as errors can occur in the process) doesn’t have migraines at this point but two other kids do (runs in spouse’s family).