I was diagnosed at 19, 4 years ago. But it happened right when i was trying to start my life so it hit me hard. My friends left me because i wasn’t as fun anymore, which means they werent my friends in the first place. At 19 i had a seizure at the wheel, went straight through a red light. It was a miracle i wasnt injured or anything. After that, life got harder. I wennt from job to job. I got fired once because i was apparently “on drugs” when i probably had a seizure and they didnt realize. I don’t bother finding friends, i try to just be as at peace with myself as possible. Got diagnosed with another type last year. It will get better, you will adapt. I have for the most part. It was so hard at first and now i’ve accepted that it’s just a part of me.

I've lost most of my family and friends because of my condition!! But y'all and little few family and friends that I have in my life is worth living and fighting to get better if that's even possible my prayers are with y'all 😇🙏🌷 God Bless y'all and I love y'all

I've been on a steady dose of Keppra and increasing periodically since I was diagnosed. Before all meds I was having 4 to 6 seizures a week and sometimes up to three a day. At my current Keppra dose of 1500mg twice daily they have slowed to 2-4 seizures a week. My Dr has tried adding Topamax, Lamictal but I had really bad reactions so those were stopped. He added Depakote Er 250mg twice daily this week with no change yet. They happen at various times of the day but mostly in the evenings and at night. Anxiety, and photo sensitivity seem to be main triggers but at times I have them with no warning and no apparent triggers.

How well controlled are your seizures at this point in time? Have you determined if you have specific triggers that might precipitate a seizure (for me anxiety)? Are you getting enough sleep? Are you eating well. For me, the biggest challenge was not managing the seizures, but learning to take care of me. I have had to learn to listen to my body (my right foot will tingle - beginning of an aura). When my foot is tingling, I have to see what is happening - and sometimes setting boundaries is more important to me. I actually was diagnosed twice. The first time I had tonic clonic (partials that would generalize). I was 21. I got managed, but was able to get off of meds. However at 55, they were back - but as simple partials (that at times were trying to generalize). My first med worked but created problems with electrolyte balance. The second med put me close to being in a mental hospital. Now I am on a combination of three meds - but for me, I had to learn that in order to take control of the anxiety trigger was to retire early (I was on SSDI). That being said, the cause of my seizures was not determined until the imaging tech was sophisticated enough to visualize the Tuberous Sclerosis - ironically seen in other areas (skin, kidney) before it was seen in my brain. But each person is different. What worked for me was to recognize my triggers, and take action to minimize those. We have just come out of a pandemic - and I am still fearful of going into certain stores without a mask. That might be one factor that is contributing to the fear of leaving your home. I ended up working with a therapist (and have done so since I was first diagnosed) because of the emotional stuff that came out. Consider that as an option, if you think that might help.