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Primary reading epilepsy is ruining my life

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Old 06-30-2008, 07:28 AM   #1
Join Date: Jun 2008
Location: Essex, England
Posts: 3
mallenat HB User
Unhappy Primary reading epilepsy is ruining my life

Although I have been suffering with PRE for 7 years now I have only just been diagnosed. Over the years it has just got worse and worse. Really I am posting this to see if anyone else has the same problem and might be able to help me.
I am finding it impossible to get a job as even the smallest ammount of reading can cause a siezure. I had an appointment with the dissability employment officer and was told that even they couldnt think of anything to help me.
Im 23 years old and am currently relying on my 21 year old girlfriend for food and a roof over my head. Te fact that I cant find a job is really straining our relationship and it is only getting worse as time goes on.
Even though PRE is stopping me from getting a job all I am entitled to is incapacity bennefit wich doesnt even cover the rent.
If anyone out there can ease my mind about what I ca do to ease my situation I would really appreciate any help I can get.
I also would like to appologise if this is badly written, but I hope you can also understand why I am not proof rading this.
Sincerely, Alloutaluck

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Old 06-30-2008, 02:46 PM   #2
Travis from MN
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Join Date: Jan 2005
Location: St Cloud, MN
Posts: 1,243
Travis from MN HB UserTravis from MN HB UserTravis from MN HB User
Re: Primary reading epilepsy is ruining my life

This is the first time I have heard of it honestly. I had to look it up to better understand the actions that go along with it.

Have you also had problems with patterns or graphics, such as carpet, or tile in buildings, bright colors, possibly leaves on trees or the screen on windows? If so, that is similar to how some with photosensitive epilepsy have problems with.

If it is similar to photosensitive, have you tried polarized sun glasses? If you notice any jaw jerking stop reading or whatever you are doing and relax for a few minutes, so you can let the mind relax, maybe recover a bit.

The one paper I read, it leaned to using valproate (Depakene), and cited that Tegretol (carbamazepine) may worsen situations for those that decided to try medications. It stated often many refuse to try the medicated route.

Best of luck. Thanks for educating me.


Old 07-01-2008, 03:03 AM   #3
Join Date: Jun 2008
Location: Essex, England
Posts: 3
mallenat HB User
Re: Primary reading epilepsy is ruining my life

Thank you for replying.
Unfortunately it is pureley reading that affects me. I have been taking the medication called epilim for three months and have not had any change except sideaffects. I am now taking Epicentre.
Not even my Neurologist has any idea of what to do.
Im just going a bit crazy being jobless at the moment.

Old 07-01-2008, 08:37 AM   #4
Join Date: Nov 2003
Location: New York
Posts: 62
Nanner1222 HB User
Re: Primary reading epilepsy is ruining my life

I had never heard of this type of epilepsy, either, until I read your post. I once worked in a very busy store, and there was another young lady employee who had trouble reading, although she did not have PRE. She had much trouble trying to learn how to use the cash register, and was just miserable. She was then able to get a job washing dishes in a nursing home. The last time I talked to her, she was very hsppy, and in fact had just been promoted. There are some jobs out there that don't require reading. Best of Luck to you.

Old 07-03-2008, 09:36 AM   #5
Join Date: Jul 2008
Location: North Dakota
Posts: 2
eaglewinyan HB User
Re: Primary reading epilepsy is ruining my life

Hello, I recently learned about reading epilepsy as well, b/c I think my brother has it, and has not been formally diagnosed with it. From my reading/researching on this topic, other suggestions were: maneuvers that briefly disrupt comprehension or increase arousal, audiotaped texts, text masking may be helpful for those who are triggered by the eye movement involved with reading; they also suggested clobazepam or clonazepam - (if valproate wasn't working)... I'll let you know more about what, if anything, works for my brother. Thx

Old 07-08-2008, 06:28 AM   #6
Join Date: Jun 2008
Location: Essex, England
Posts: 3
mallenat HB User
Re: Primary reading epilepsy is ruining my life

To eaglewinyan: How long has your brother been suffering the symptoms? Have you had any luck with your doctors? I ask this because when i aproached my GP with the complaint he basically laughed at me saying that he had never heard of it so it wasnt real. Thats why it took me so long to be diagnosed. Also if your brother is booked for an EEG suggest hat he reads a little while the readings are being taken. I have been told that this is the only way that it will show up. I really wish you and your brother the best of luck as this is no easy situation to find yourself in.

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