I need to talk to other people who have to deal with Primary reading epilepsy...
 

seizures resulting from reading are pretty scary .It isnt the most common type of epilepsy but it is what I have.

Im 20 years old and I am going to school to be a hair stylist (I dont have to read as much as a regular college student but I still have to read and I still enjoy reading books that have nothing to do with school)

anyways, heres my question/thoughts/feelings/concerns...you get it.

I wanted to know if anyone else has this.
when I read, I get these twitches in my jaw, which occasionally...if I continue to read, will turn into a seizure. It is especially bad if I am reading out loud. It sounds like I have a speech impediment. It really scares me when I get these twitches and I have to immediately stop reading when they start. It gives me anxiety and they need to stop. I wanted to know if anyone else has these twitches with their primary reading epilepsy or anything similar

I mean seriously, its not like I can avoid reading so I want to get all the information I can and see if anyone else understands or has experienced this.

thanks
-haley

Hi Haley,
Welcome to the forum! I'm no Dr. but I've had seizures for 37 yrs. and my neuro found that I was photosensitive which means certain colors will trigger seizures for me. Also certain sounds can trigger seizures sometimes. This is also known as audio and visual epilepsy. You need to speak to your neuro and have a special e.e.g. done where they will flash different color strobe lights one at a time to see if certain colors will trigger the seizure. I found flourscent green, amber, and bright white trigger seizures for me. The next time you start to get these feeling tighten up all the muscles in your body and make your hands into tight fists this will stop the seizure if you catch it in time. I learned about it back in the 1970's from my neuro and it has stopped many seizure. Also try taking vitamin B12 1000 mcg. a day, vitamin B12 will help calm the nerves down. Here's wishing you well and May God Bless You!

Sue

Hi Haley,
Check out Reflex Epilepsy on line I found that people with this form of epilepsy will have seizures when reading. Wishing You Well and May God Bless You!

Sue

Is it possible that stress possibly experienced while you are reading may trigger your seizure activity? I have not heard of Reading Epilepsy as a specific type. I just learned I have a Reading Disorder where I am not processing what I am reading so that I benefit from the material. Thay is stressful by itself especially when added to the stress of wanting to do well in school etc. If you have had Neuropsych testing, check and see if that was detected in your results. If not, may be a good thing to check out. I hate to read too and maybe this is why. There are accommodations that help with reading if you can show the need, The testing will help with that. Also, do you see an Epileptologist? If not, please do that first! Keep us posted. Tattoo

Haley,
I was diagnosed with a reading seizure disorder (basically Primary reading epilepsy) over 20 years ago. At that time I was the 9th case reported there was no real information on this form of disorder. Your signs are exactly what happens to me. I know how scary it can be and yes public speaking can be awful. Have you seen a nuerologist and received any meds? Mine can be control with medication but most often I know the warning signs (jaw jerking) and tend to refocuse myself when these occurs.
Hang in there I made it through high school and college with the same problem. I will try to answer any questions you may have, I know how tough it can be.

Todd

I experienced a partial seizure the other day reading my school homework. My thoughts got very strange and the text started warping and I had this strange feeling in my gut. Then the moment just passed and I was able to read again. I found the moment very jarring, especially when I switched back to 'normal' mind.

P

primary reading epilepsy
 

I have it too. I am a foreign language interpreter and it causes problems when i am sleep deprived or hungover (so I stopped drinking a couple of weeks ago) I hear Valproate ior Clonazepam is good for it. My neurologist doesn't believe I have it, even though the EEG proved it when it only showed abnormality when I was reading. But it happens at my work too. I try to disguise it by speaking slowly and trying not to concentrate too had when I feel my jaw jerks, but it'[s embarassing when people think you're stutering. Gotta go. Talk later maybe. Let me know if you found a solution. I know yoour post was a long time ago. bye.

I have primary reading epilepsy too. I'm not exactly sure when it started, but I was diagnosed with it about a year ago, I'm 17 years old now and not in school anymore.

You're not alone on the jaw twitches, I get exactly the same thing. I don't know if you get this, but sometimes when the twitches are going, you'll come upon a word and the twitches won't let you finish the word, or even comprehend it, unless you look away, calm down for a second, and then try to read it again. It's really freaking annoying and embarassing.

I didn't really think of it as a problem until I had a full blown seizure in the middle of English while reading a book. That was probably about a year ago, and I haven't had a seizure since. It almost happened again when I was reading out loud in History, but I think my teacher noticed that something was wrong because I was having a really bad anxiety attack and could barely breathe, so she told me to stop. I was just paranoid that the twitches were gonna start while I was reading and everyone was going to hear me stutter.

Eventually I dropped out, there's just too much reading and language involved in getting a good education, even now as I'm typing this the twitches are going. My Neurologist just prescribed me a pill (no surprise there) called Depakote that's supposed to prevent me from having seizures and stop the twitches. Of course it doesn't work, but I'm not going back to that place, they don't really care about you, everytime I see a doctor they just prescribe me some damn pill that's supposed to magically solve all my problems.. All they care about is getting me out of there as fast as they can so they can free up their schedule for other patients.

It really is one of the more *** up epilepsy cases, when you can't do something as simple as reading..

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help. There are great number of fellow members here to assist as possible.

Again welcome, looking forward to seeing you around.

Darlene:hug: