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Hi all! My name is Paige and I have JME. I was diagnosed in 2012 at 14 years old. I’m now 20 and taking 300mg of lamortagine (generic lamictal) once daily. I remember what it was like for me, a middle schooler trying to figure out who I am, just being diagnosed with epilepsy. I just wanted to come on here and say that if anyone wants to talk, ask questions, or connect me to talk with their child, I’d love to help.
Thanks and stay strong,
Paige

Comments

Hi Paige! First of all,

Hi Paige! First of all, please excuse any typos or mistakes since I am not a native speaker. I am the mother of a 15-year old girl. She was diagnosed with JME 3 years ago at the age of 12. At that time she was experiencing only myoclonic jerks - almost every morning upon waking up. She was put on Keppra and for 2,5 years all symptoms were disappeared. We had almost forgotten about JME until October 2018 when she had had her first grand mal seizure at school in front of all her classmates. The neurologist said it was a breakthrough seizure and therefore he increased the Keppra dose. Unfortunately she had two more grand mal seizures and she was hospitalized twice. Now she is on Keppra and Lamictal and she has been seizure-free for 3 months. This situation had huge psychological impact on her but now she is starting to deal with it. Fortunately, she is getting a lot of support from her teachers, friends, etc but she is anxious about her future. She has been always dreaming of studying abroad but she is having second thoughts. She is wondering if she could live an independent life. From our side, we have not changed her life at the least. She is attending the same extracurricula activities as before, she is travelling abroad in the framework of school activities, she is participating in competitions and she is leading a normal 15-year old life. I would be mostly interested in your experience with JME. How did you deal with it as a teenager, how long have you been seizure-free and any advice on how we could support our girl would be mostly welcome. Thank you very much.

Paige, our daughter is 17

Paige, our daughter is 17 years old and was diagnosed with epilepsy 2 months after her sixteenth birthday.  She has been diagnosed with IGE.  She had her 4th seizure Saturday.  She is taking Lamictal 300mg and is now going up to 400mg.  She is having a very difficult time coping.  She doesn’t like to talk about it with her friends and is ashamed, embarrassed and mad.  Do you have words of advice?  She needs someone her own age to talk to because “we don’t get it”.  Thank you and God Bless!

In year 2004, I started to

In year 2004, I started to have convulsive seizures at my freshman years in the university. After my second convulsive seizures within 5 days after the first one, I had done the EEG test, and then was diagnosed with epilepsy. I still had so many seizures within a week with the AEDs. I had many side effects from the meds, lost my jobs, driver's license, and ability to focus on studies at school. I took years off from the university. My neurologists told me he could not find what cause the seizures for me and it is dangerous many times because many seizures lasted more than 5 minutes and had multiple seizures at a time waking up in an ambulance or at the ER. I was only suggested surgical treatment to implant a device to control my seizures, which I did not want to do at the time. So after 3 years of trying AEDs, tests, following guidelines and advises from my neurologist, I tried to search for alternative treatment. I had taken different approach to control my seizures and finally after 6 months of alternative treatment, I became AEDs free, and seizure free. My neurologists could not believe my seizure was controlled without AEDs, and without any surgical device implantation. I asked him to sign release so my driver's license could be reinstated, but he told me he can not do it in short period of time. I went back to see him again in 2010, almost 3 years after not taking any AEDs and with no episode of seizures. After going through many exams thoroughly, he signed a medical report for me to get my driver's license back. He told me he had never seen anyone like me who had severe uncontrolled seizures becoming better in 6 months. He told me it is like a miracle. I had horrendous life with seizure. I know what people feel with seizures in their life. Sometimes I felt I was weak, and had so much frustration. I had no hope for better future at the time. After the alternate treatment I had, I found hope and healthier me. It is now 2019, and I am still seizure free, and meds free. I want to help people who have similar issues. I had helped 2 other individuals who also had seizures for more than 20 years. I can not guarantee 100% effectiveness for all types of seizures but when it works it works like magic. If you would like more info, let me know

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