Genetics and Seizures

[lpester]

I'm new here and in search of answers for a seizure disorder that I have inherited through genetics. My father and I both suffer from the same seizure disorder (my sister does not have the gene), with mine being a bit more severe. The onset of seizures started for my father when he was 16, and mine started when I was 18. The seizures we experience happen not upon being awakened, but somewhere around 3 to 5 minutes after waking. They never occur while laying down, which is unfortunate for me since my seizures are grand mal. The seizures seem to be triggered by getting up and walking somewhere, which has been the bathroom several times for me. Thankfully I have never been seriously injured, only my tongue taking the brunt of the injuries. The seizures occur very infrequently. The longest stretch between my seizures was 3 years, my father's was 15 years. The last seizure free stretch I had was 1 1/2 years until it happened again Thanksgiving morning . I have had many EEG's and MRI's and nothing has ever shown up as abnormal. The same with my father. We both have been on many different medications and both have ultimately ended up on Lamictal 100mg 2xday (we go to different dr.'s in different states). There has never been a clear answer as to what this disorder is and how to properly treat it. But I think that lack of sleep and possibly alcohol could trigger the likelihood of it occurring, but that hasn't been the case for every incident. Its all very frustrating, especially not being able to find information on seizures that happen like mine do. Anyone out there have seizures like this? And do other family members have it as well?

 

[jemsister]

I wish I had something helpful to say. I'm not very familiar with epilepsy and genetics. I have people in my family with seizures, but not the same kinds as mine (uncle with childhood GMs, cousin with myoclonics, and me with partials and drop attacks). I have no idea how that all correlates. But more than likely there is someone here with some good info for you.

Do you make note of when you have a seizure, of things like how much sleep you've had, how much alcohol, what foods you ate, etc.? It's hard to establish a pattern with them happening so infrequently. When was the last time you saw your neurologist?

 

[Nakamova]

Hi lpester, welcome to CWE!

There has never been a clear answer as to what this disorder is and how to properly treat it. But I think that lack of sleep and possibly alcohol could trigger the likelihood of it occurring, but that hasn't been the case for every incident. Its all very frustrating, especially not being able to find information on seizures that happen like mine do.

Well, it seems pretty clear that you have epilepsy, so don't stress out about the "why and what." It doesn't even matter so much whether or not it's genetic. Treatment is usually the same regardless -- trial-and-error with meds and doses until you find something that works. (In some cases alternative/complementary treatment with diet and/or neurofeedback can help. And in refractory cases that qualify, surgery is considered.)

It sounds like you've been through the "trial-and-error" part with the meds, and the Lamictal is the winner. if you're still having seizures (even very rarely), then perhaps the dose should be increased a tad to give you more of a safety margin. It could have been a one-time stressor that lowered your seizure threshold on Thanksgiving, but if you can't identify or avoid the stressors then a higher dose might be in order.

I hope you are feeling better post-seizure. I know how unnerving a "relapse" feels.

Best,
Nakamova