First Grand Mal Seizure.

[JessieDearly~]

I'm 18 years old and 2 years ago, in summer school I had a grand mal seizure. I was just sitting near a computer doing work and all of a sudden I wake up on a stretcher. I didn't feel weird that morning, to this day I'm still scared of having a seizure, I am on Keppra. Also, I do have a history of the Fever/Febrile Seizures. But the thing is no one knows why I had a Grand Mal seizure.

I recently got diagnosed with a genetic disorder called linear nevus sebaceous syndrome...and we don't know anything about that because only a 3rd of the population has it.

And at night I twitch myself awake, and my mom thinks I am having break through seizures but my doctor will not test me for it..they want me off of the Keppra. Is this such a good idea?

 

[Nakamova]

Hi JessieDearly~, welcome to CWE!

First: If your doctor will not take your possible seizure symptoms seriously, find one who will, and who listens to the concerns of you and your mother. It would be great to get off meds, but much better to do so when you are feeling confident that your brain is behaving.

Second: Consider taking a magnesium supplement before going to bed. Magnesium plays a role in brain and and in relieving all kinds of muscle contractions; it has helped some people reduce seizure-related twitching.

Third: It's not unusual for a seizure to occur out of the blue. For the majority of people with epilepsy the primary cause remains unknown, although there may be secondary triggers such as fatigue or metabolic issues that may play a role.

Fourth: I'm sorry to hear of the diagnosis of linear nevus sebaceous syndrome. Since it can cause seizures, that may be another reason to remain medicated, or at least proceed cautiously before going off meds altogether. I hope your doctors can work together as a team to figure out the best treatment approach. If you do go off the Keppra, avoid driving until you have a good sense of how you are feeling.

Best,
Nakamova

 

[Cardones]

Hey

I had a single seizure around your age too. I haven't had a recurrence for almost 18 years so far, but I do occasionally still worry about it so I can empathise with those feelings.

Were you originally diagnosed with epilepsy? If not, and all your tests (such as EEG) at the time were normal you stand a good chance of being able to come off the meds successfully now that it has been 2 years.

How many fever seizures did you have? I think having one or two when you are aged 18mths to 2 yrs old is quite common in the general population. I have several friends with kids who have had them and they do not have epilepsy.

I personally wouldn't be too worried about jerking when you are falling asleep. These are very common in the general population. Google 'hypnic jerk' and see if that sounds like what you are having.

Having just briefly googled the syndrome you were diagnosed with it dfoes appear seizures can be a common symptom, so def do as Nakamova says and find a doctor who will take you seriously if your current one won't.