Re: my story and questions.

Dear Erin: I can understand you not wanting to take meds that don't make you feel right, but please think for a moment that the condition you have can be very serious, especially if you tend to have them at night when someone may not be there to assist you if needed. I lost my 17 year old son the day after Thanksgiving of 2002, just 1 1/2 years ago. We didn't even know he had the disorder and had never seen any unusual behavior with exception to an incident a week prior to his passing. He woke with a sore tongue and when he showed it to me I saw teeth marks on it. I took him to the doctor and he sloughed it off like it was a fluke. He never even mentioned the possibility that it could be the sign of a seizure and we left the office that day with a false sense of security. I lost my son exactly one week later. He never woke up the day after Thanksgiving. He had been up until wee hours of the morning playing video games with his brother which I feel strongly triggered the seizure. Since the passing of our son I have read everything I can get my hands on and one thing I know to be true is lack of sleep can definitely be a trigger for someone with this disorder so please be pro-active in your own care. You can always try different meds, but please, please don't stop taking the meds without talking to your parents or your doctor and you need to take your lifestyle very serious. I didn't share my story to scare you, but to educate you as most medical professionals never tell a patient that seizures can cause death. I will wish the best for you and sorry to hear you have to suffer with this disorder. Take care!! Tweet