Primary reading epilepsy Please Help!!! - Epilepsy Message Board

queenie_bimbo · 05-05-2005, 03:46 AM

Hi there i am trying to find anyone who has the same symptoms as me!; face/throat spasms when reading,talking,reading out loud especially.

Had a tonic/clonic a few months back (while reading a magazine) so was sent for E.E.G. The neurologist is trying to say that they couldnt find anything conclusive on E.E.G but i am having these symptoms every day!! find it impossible to talk on the phone or read for more than ten seconds! wish i could find someone else with the same condition!!!

zfox · 05-07-2005, 11:20 AM

I have PRE with what sounds like the same symptoms. Whenever I read I get myoclonic jaw spasms, which I remember getting as far back as when I was 13. The first time I had a full tonic/clonic siezure I went to a neurologist who told me the jaw tremors were not related and just sent me in for a normal EEG and accordingly the results came back normal. The second time I had one I went to a different doctor, who having had heard of PRE instructed me to read while taking the test, which confirmed the diagnosis.

With me, it happens more frequently w/ complicated reading, which is sometimes a problem as I'm in college (reading out of a Calculus textbook is especially tough). Also, I've notice the onset is much quicker for me, too, while reading aloud. This is to the point where I refuse to do it at school and try to avoid it as much as possible elsewhere. It does make me wonder sometimes how I will ever make it in the business world w/o having to give a presentation.

I have also noticed that handwritten text does not affect me as much as typed (may just be because I don't read any lengthy, handwritten stuff very often). Is this the same with you?

queenie_bimbo · 05-09-2005, 06:28 AM

Thank you for your reply i cant seem to find anyone who has even heard of it. I had to quit uni because i was doing french and psychology and found it completely impossible to read aloud in class which, of course, is the core of the french lessons. Even writing this email my face is twitching. I was quite lucky in that when i went for my E.E.G the technician made me read out loud and also to myself which inevitably caused spikes.

They have unfortunately said that the E.E.G hasnt provided enough evidence to suggest that it is P.R.E, which i find completely unnacceptable because i really need treatment as i cant function at work and it drives me crazy!! I have to take orders over the phone (impossible if im nervous especially) and answer emails all day. being hungover doesnt't help either! I simply cannot read or talk the morning after a night out.

I cant say i have noticed it with hand written text but probably due to the fact that i hardly have to read it at length as you say.

What treatment are you recieving may i ask? have you been given medication?

zfox · 05-09-2005, 10:24 AM

They had me on Depakote, which is valproic acid. I had to take 4 (2000 mg!)in the morning to get most of the twitching to stop. Like I said most of the twitching stopped, but not completely. I guess it was that fact and the $50/per month (for the rest of my life!?) that made me stop taking them.

You are right, after a night of drinking I can not read a single thing w/o the symptoms bothering me incessantly. The more the alcohol, the worse it is. It really sucks having to plan out drinking, thinking of what I have to do the next day.

It has made me learn to basically speed read. The more I annunciate the words in my head the more likely they cause a siezure. But even this does not work, so I have to break my reading into shorter intervals. I'm not saying that I quit after the first jaw twitch, it is more the spacing of them that dictate to me when I should stop. It gets extremely scary sometimes, though, especially while trying to cram for a test or other reading that I have to get done.

Apparantly it is a pretty rare condition. You are the only other person I have ever talked to with it (if that is what it turns out to be). The only consolation I can offer is that at least it is not regular epilepsy (sorry to all those out there with it). Another thing the neurologist may be thinking is that w/ normal epilepsy it is not considered such until you have 2 seizures. I guess they hope the 1st is simply a fluke. You might try telling them to put you on the medication for it because you cannot function as is, if it helps it means you probably have it. I know this all probably sucks for you, I took it pretty hard myself. I went through all the normal stages of denial, depression, anger, etc, and finally to acceptance. Hope this helps.

queenie_bimbo · 05-09-2005, 10:51 AM

i think it is pretty rare because i had to actually tell the neurologist what i thought it was! Only because i looked it up on the net. he hadn't really heard of it.

I definately can relate to the speed reading - i used to love reading and still do but i find if i try and understand each word it makes it a lot worse. And i find that reading a book or text that i have read already read, means that i dont have twitches at all really. that is why my results on the E.E.G were so rubbish because i was reading something familiar. If i am reading a book, i have to read a page and if i get a twitch i have to put my hands over my eyes. then i can start again haha.

It seems to be getting worse because i can barely read a text message anymore. The thing is, i probably wont have another seizure because i can obviously feel it coming on, and therefore are able to stop whatever it is i am doing that is going to cause the seizure. The reason i had my fit before was because i didnt realise that it was the reading that was causing it, so just kept on reading. So the doctors might not be convinced enough to medicate me. i wish they would! i know it sucks to have to take medication but i really need it.

Sorry i am blabbing on it is just so good to speak to someone who doesnt think i am completely barmy!! my mum has been on carbamazapine for epilepsy since she was 11 so i guess it runs in families as my grand parents had it too. nothing major just absences etc.