Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Songs & Interviews
Thu, 02/15/2018 - 08:59I am writing a song and doing interviews about living with epilepsy. It's for school and I would really really appreciate your help! If you have any lyrics you would like me to use in my song you'll get credit, and if you want to contribute to the interview just go ahead and answer as many or as little of these questions as you want. Thank you!
When were you diagnosed?
Are you on medication? (If so please name them and how often you take them)
Have you found it difficult to live with epilepsy/does it get in the way?
What is your favorite thing to do despite having epilepsy?
How long have you had epilepsy?
Have you ever seen someone else have a seizure?
How many other people do you know in real life that also have epilepsy?
Comments
I was diagnosed with complex
Submitted by LaGallina on Sat, 2018-02-24 - 10:26
I was diagnosed with complex partial seizures October 2017, after having seizures for six months. I had really negative side effects to seizure meds. I went from one seizure a week to four a day. It took some trial and error but I manage ( I have them about once a month) my seizures with a Ketogenic style diet and three doses a day of High CBD/Low THC oil. Currently weaning off the oil to the lowest possible dosage only because they make me low energy. It really truly sucks to have epilepsy, its embarrassing and frustrating. Every once in awhile I just cry because I feel stuck not being able to drive.I lost my job and self confidence when things were bad. When you have four seizures a day, you're not really living. The diet and oils have given me my life back! I taught myself to cycle (clipped in shoes) after I lost my job.And I kept running. I totally have had seizures doing both, and it slows me down, its a little confusing but I just push through. My family gets really worried, but Its just something I have to do for me, for my sanity. I've had Epilepsy for ten months. I saw my dog have a seizure and it was truly horrible. It was good for me though, because I was feeling frustrated with my family when they would fuss over me during a seizure and try to move or hold me. Now I understand how scary it looks to them. I have a great Aunt with Epilepsy, but I've never seen her have a seizure. I definitely have some weird poems and drawings I made last year. I'll see if I can find them. If I can I'll share anything that I think you could use. GOOD LUCK with your project!
I thought of a line several
Submitted by birdman on Thu, 2018-02-15 - 21:36
I thought of a line several years ago that sounded good but I didn't know what else to do with it:No, I'm not a doctorI have no PHDInstead I'm called a patient This is my specialty