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Old 07-06-2002, 11:50 PM   #1
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Join Date: Jul 2002
Location: tyler. tx
Posts: 34
^enigma^ HB User
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i was just diagnosed with epilepsy yesterday and am fairly new at this even though i have had this problem for about 2 and half years. Here is some background info before my main question:

I am 26 and i never had a seizure untill i was hurt in an accident at work. I was struck in the head with a steal door and knocked unconcious. Since then i have had many seizures and they seem to get progressivly worse. I dont have grand mal (so i am very lucky there).

My seizures constist of one or more of these things:
Body parts shaking and jerking.
Loss of memory(although i seem to be awake to others).
Slurred speach and slowed responces.
Sometimes am unable to remember where i am at or who someone is.
sometimes they are even very painfull.

a little more background(sorry):
I have seen 2 nuerologists and have had 2 CT's, 2 EEG's, and now 2 MRI's. All which came back normal.
The first nuero said that i had anxiety. Which i dont fully understand how that could be caused by a hit to the head. Also about 5-6 years ago i did have anxiety attacks and was put on xanex(sp) which help alot. I dont take that anymore and havent for nearly 5 years. What i have now is completely different. So i dont think that is the case. The next nuero i went to see said he thought i was having seizures and wanted to run some more tests. I was completely tested out at that point so i just stopped seeing him.

Last Wednesday i had a pretty bad siezure and since then i have had these dull pains that feel similar to a low voltage electical shock about every 5 to 10 seconds. I went to the ER yesterday since it was going on for three days. I had a seizure there and was given dilantin. Also since wed. I am now sesetive to light and sounds. Today I was watching tv and suddenly a strobe effect was done on the program i was watching which made me feel like i had been struck by lighting untill i was able to pull away from the tv.

My first question is: Is this normal about the electical shocks and is it normal for me to be affected by lights(even just very bright lights) all of a sudden

Second question: Is it normal for all of these tests to come back normal and to not be diagnosed for over 2 years.

Many thanks for any help you can provide.

PS. Sorry for the long post. I have never known anyone with this so i dont really know anything about it. and I think most of it was just getting 2 and half years of frustration out. Thanks agian.

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Old 07-07-2002, 10:31 AM   #2
Join Date: May 2001
Location: Chicago,Il
Posts: 99
pacemaker HB User

I hope you are feeling good today. I know somebody
that is photo light sensitive she canot look at
a emergency vehicle lights without haveing a seizure
I had all the test you had done, and they all came
back normal! I like you are frustrated, as to the
cause. I think it helps to get thing off your chest.
Is there any kind of support groups in your area?
this might help you. Don't worry about letting off
steam, that's what this board is for.
Take care of yourself

Old 07-07-2002, 09:19 PM   #3
Junior Member
Join Date: Jul 2002
Location: tyler. tx
Posts: 34
^enigma^ HB User

I think i do. Im going to check it out tomorrow. I think i really have a lot to learn about E. And would like to talk to people with it as this is all faily new to me.

Some other things i hvae noticed and these are minor things: Ive been having seizures pretty much constantly since wednesday. Im very sensative to light now and also have seizures when i see a flashing light. A single flash of light wont do it but it hurts very badly, like electric shock.

Triggers have been: my favorite game(urban terror, the flash grenades make it impossible), sun shining through a moving fan. Strobe effect on TV(this happened twice), Lightning, and headlights shinging through trees.

Im also having trouble forming sentences and spelling. Trouble typing and my job constists of me sitting at a desk most of the day typing(so i never have to look at the keyboard). While im typing i keep hitting letters that i think im hitting, then i look done and im hitting different letter. almost like the keys have been scramled. Ive been kinda grumpy and have no patience with my family which is so strange because i am a very patient person.

All these things i listed i have only noticed since wednesday and ive been having seizusres for over 2 years as i mentioned in the last post. I had a very bad seizure seizure on wednesday that almost made me feel like i had just had the accident again.

Please help. Ive just gotten my drivers lisence taken away and my boss told me that i cant come back untill the doctor put it in writting that i was able to. All this has made me a little scared and im not sure what to do.

I am supposed to call a nuero tomorrow and the doctor at the hopital was pretty confident that he would be able to see me either monday or tuesday. Which is very good since the last time i went through this it was a 1-2month wait.

Thanks again, and im sorry this was so long, I just have so many questions.

Old 07-07-2002, 10:07 PM   #4
Junior Member
Join Date: Jul 2002
Location: tyler. tx
Posts: 34
^enigma^ HB User

I think i just found at least a clue to what is happening. My wife had the idea to check my eyes and see if they are dialating. The left is fine but the right doesnt at all. She says it is very tiny even with the light shining directly on it. Also ive found that my left eye is not affected by bright lights. I havent tried any kind of flashing light because that is freakin scary. Just thought i would share and whould like to hear your feedback. thanks.

Old 07-08-2002, 02:15 PM   #5
Join Date: Apr 2002
Location: VT USA
Posts: 450
Krazykcio HB User

I have no advice....sorry! I just wanted to offer my support...and prayers. Hope you get the answers you need. Kathy
When Mamma ain't happy ain't noone happy!

Old 07-08-2002, 06:37 PM   #6
Junior Member
Join Date: Jul 2002
Location: tyler. tx
Posts: 34
^enigma^ HB User

Thanks Kathy.

Just to keep you posted on the situation(more just to get it out). I went to the nuero today and he answered many questions for me. He scheduled some tests on wednesday, MRA, EEG with strobe light(really not looking forward to that but maybe it will help the doctors help me) and various blood work and check the level of dilantin.

I am still kinda scared and it doesnt help that the doctors have gotten me in so quick. When i 1st called they said it would be a month but when i had the hospital fax them my med history they called back and said to come in today. then they scheduled tests for 2 days from now. But I am getting used to it and accepting it.

Im really glad you guys are here and again many thanks. i havent checked on the E support group here yet cuz i had too much to do. I will soon though.

Old 07-08-2002, 08:49 PM   #7
Join Date: Apr 2002
Location: VT USA
Posts: 450
Krazykcio HB User

Hi Enigma,
I am glad that you got the appointment so fast. Try not to read into it too much (why they rushed you in) because stress isn't good for seizure control. Make sure to bring a detailed list of your symptoms/concerns/questions so you don't get tongue-tied. Take your time, and don't let the Doc rush you (I find they often do.) Good luck, please keep us posted. Kathy
When Mamma ain't happy ain't noone happy!

Old 07-11-2002, 09:48 AM   #8
Junior Member
Join Date: May 2002
Location: toledo, oh, usa
Posts: 22
PatM HB User

it is the not knowing that makes E a particularly crappy dissorder. i have lost many jobs in my past due to the ignorence of my employers. although i do not know much about your job, i advise you to think about not going back to work until you are better. E may very well stay with you for a long long time. iff you have not had a seizure at your work place that causes problems with your duties then maybe you should go back and talk to your boss. got to go, PatM

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