New "kid" on the block (with TLE)

[henigushi]

Hello to all of you. This seems like a wonderful community and I'm happy to be part of it.

I have temporal lobe epilepsy as a result of thickening of scar tissue from brain surgery that was performed in 1986. The onset of temporal lobe epilepsy was more than 13 years later. The seizures are simple partial and of two types, a mild version in which my brain attempts to process background noise as speech (the air conditioner, for example, might seem like speech for ten seconds or so) and a more intense version that produces (sometimes extreme) discomfort. I go through periods approximately two weeks in length where I'll have several seizures a day, followed by three or four weeks seizure-free.

The thing that is most difficult for me is that reading is one of my main triggers. Even during a seizure-free period, all I need to do is open a book in the morning and boom, a seizure. I can get around this by waking up my brain with Sudoku or other number games (never language games, like crossword puzzles, which also trigger seizures), but this is only during those periods when I'm less prone to seizures. I've noticed that the less I read, the worse my memory has become, and the poorer my ability to focus. So I am heavily invested in figuring out a way to read again without triggering seizures.

Do any of you have reading-triggered seizures, and any luck with meds or other means of controlling them? Also, has anyone done any kind of systematic analysis on supplements to determine if they reduce seizures? I try to keep everything else consistent and introduce a supplement or behavioral change for a month, and then see if my seizure count changes. No supplements have worked for me thus far. Keeping my stomach and gut happy through healthy eating, fiber, and plenty of water have definitely helped, but I haven't been able to escape these two-week, seizure-intensive blocks of time.

I'd love to learn about what has worked for you, and I'm happy to share more about my own experience with anyone who is interested.

Take care!

[skillefer]

Hello! Welcome to CWE. From what you describe, you might be photosensitive. Photosensitivity does NOT mean just lights can trigger a seizure. It also means that repeating patterns might. Have you tried seeing if print in other then black ink triggers you? Or maybe different colored ink on a different colored paper. Sometimes, its the black on white contrast that's the trigger. If you are photosensitive, then a tinted glass lens may help you. Blue polarized lenses, made of actual blue glass and not with just a blue tinting put on plain glass, has been found to help some people with photosensitivity. Check it out.

[paradise survivor]

Just a thought, but have you tried audio books? You are still getting a mental work out but maybe without a trigger? I too love to read but I find that I have trouble focusing on a book versus a magazine or newspaper.

[BuckeyeFan]

Welcome to our house! It sounds like you may have looked around some already. Skillifer's suggestions above sound interesting and I have never heard them before. Learn something new everyday!

I also enjoy reading, but often am tired after work and the eyes tend to not focus as well, bouncing around and not staying on the right line. Got new bifocals recently and that seems to be helping some.

[skillefer]

*chuckle* Actually, the advice about the different colored inks and paper comes from working with the kids that I do. A couple of years ago, I had a student that had Scotopic Sensitivity Syndrome. I had to get him all his work in colored inks....for some reason, he just couldn't read it if it was black ink on white paper. I'm wondering if the photosensitivity is also triggered by the black on white pattern of common text.