Siezures and Heredity, Cofusion, ect.

[ambergsmom]

Hello, I want to first take the opportunity to thank you for taking the time to take my question. I must first start by saying that I was diagnosed with migranes with aura 6 years ago. 5 years ago they reconsidered this diagnosis and consider possible seizures because sometimes when I get the visual aura I don't get the headache with it. Also I was on depakote and the while the depakote helped with the headache it didn't take the aura and other dissociative type symptoms away. They placed me on keppra and it all went away. Three years ago I got pregnant for my daughter and they removed me from all meds. I did ok, with just occassional problems. My daughter was diagnosed in march 2004 with partial complex epilepsy with generalization, recently she went out of control, and has been in and out of the hospital, she also has several areas on her brain which indicate some sort of a demylenation process. For two months I have been severely sleep deprived, and stressed beyond my limits. Last tuesday, I woke up feeling weird. Like my head was light and heavy at the same time, I was disoriented, and confused, felt nauseated. I went to school and felt this way for a total of about 45 min. Then it restarted about an hour later. At this point my arm started to shake and I went out side, next thing I knew I was surrounded by paramedics, firemen, campus safety, and classmates. I didn't go to the hospital then but I did later. I was found to have an high WBC of 14.3 and my neuro said he thinks I had a generalized seizure. But I don't understand this because my EEG was normal.

[jan]

Hi Just,

I have had 2 VEEG's.  The 1st one got me the diag of E.  I had slowing, sharps, and spikes in temporal lobe.  No seizure, however. The other EEG's, regular ones, only showed slowing.  

Since my treatment I have gone to another epi and had the 2nd VEEG, it was perfectly normal as were 2 reg. EEG's prior and one just recently.  He felt the 1st VEEG wasn't convincing and the 2nd cleared me, but now he is thinking I may have E, but it is from too deep to register.

Not only did they sleep deprive me (although not much), but they also gave me wine with dinner.  LOL  During this VEEG (2nd) they took me off the Trileptal, too.  Still normal.  :o)

I am glad to hear of your success with the surgery!  Congratulations!!!

[Just 4 You]

Jan,
I have Epilepsy and the doctor is right, just because you didn't have a seizure in a 20 minute test doesn't mean you don't have anything wrong.  I've had several EEG's done, and the only ones that were really helpful were when they put me in a Hospital Room for a few days with the EEG monitor going, a video camera recording, and stopped all my pills.  They also wouldn't let me sleep at night, as lack of sleep causes seizures, and without my med's... BOOM!!! They got it on film!

Now I'm not saying you have to wait until your doctor puts you into one of those seizure monitoring units, but the next time you have an EEG, they always tell me not to sleep the night before, and do not take my pills in the morning until after the test.  That increases your chances of having a seizure during the test, otherwise they won't see any abnormal brain activity, and say you're fine!

Using that recording, they were able to back up the recording and find exactly where the seizures began, then did surgery, removing that tiny spot.  I've been seizure free ever since surgery...Oct 9, 2003 (just over 2 years now).

I know it sounds wierd to do stuf that will make you have a seizure, but to stop them you have to prove they exist!  Otherwise, people will think you just passed out or had a panic attack.  I went through that before I got diagnosed.

Hope this helps.  
Just 4 You

[jan]

Hi,

Yes, I am a member, but am not going regularly lately as I am not currently diagnosed with E.  I have been diagnosed and treated the 3 yrs. required and have had normal EEG's since.  My current epi said he didn't think I had E anymore, but now thinks they may be coming from deep in the brain and not registering on EEG.  SO, I still have to be monitored.  I am trying to pull away from the E and get on with life after working hard on accepting, now ...  LOL

Citizen,

I don't know why that would happen.  I'm wondering if you used the different address sites w/different provider.  If not, maybe you should try a different provider.  I hope you can get registered.

[CCF-Neuro-M.D.-PW]

One normal 20 minute EEG does not rule out a diagnosis of epilepsy. When up to 3 EEGs are done the diagnostic rate goes up to about 70%. An EEG with sleep, photic stimulation, or hyperventilation can help increase the diagnostic yield of EEG. Your history is somehwat concerning for a possible seizure and this should be evaluated first before attributing it to a complex form of migraine. The most definitve way of diagnosing epilepsy is to undegoe continuous video-EEG recording and have a seizure captured on video or EEG. An MRI of the brain is usually indicated where a focal/partial epilepsy is suspected as by your history. Talk to your doctors about having this evaluation, perhaps at a larger epilepsy center like the Cleveland Clinic

[Citizen T]

I've tried to sign up at that site using 4 different emails and i never get a password sent to me (checked spam folder),   emailed the admin. and no reply.

[ambergsmom]

jan are you a memeber there?
I joined this morning...had a very bad night and called my neuro the dr on call was VERY rude to me and told me to go to ER I told him if he wanted to come sit with my kids I'd gladly go...he said ok call monday morning...argh!

[jan]

Hi Joy,

I thought you might like a link to a very supportive epilepsy forum:

http://brain.hastypastry.net/forums/forumdisplay.php?f=133

Some of the people there are well informed and can help you.  They're all very friendly.

You can have a normal EEG and still have E.  If you didn't have a seizure during the EEG or the seizures are coming from deep in the brain it can be normal.

[ambergsmom]

ran you of space. So I was wondering what you thought. The MRI report said unreadable due to movement but I don't remember moving through it. Do you think this is hereditary? ..weird...I wrote this thing for my neuro:

My eyes are going crazy
The lights are coming from every which way I can hardly see
They are bright, brighter than the lights that you normally see
They are green and yellow red orange and blue.
My mind is clouded, I can't think,
Where am I going I have no clue?
My insides are shaking,
My body is heavy and I feel like I'm falling but but I am standing still.
My head is light but heavy and I can't hold it up. I'm gunna puke.
The words I can't get them out they make no sense to me
oh god what is happening to me.
My mind is trying to speak but my mouth speaks nothing its jumbled and garbled I'm just not me. People talk to me but I don't understand them.
I can't see, everything I look at is these horrible lights the lights why don't they stop.
They go away, but I know they'll come back.
My speech is better but not what it should be if I get pulled over they'll think I'm drunk.
What is wrong with me?
I go to bed, I wake on the floor hours later, my arm hurting my head throbbing, my mouth with sores. I am going crazy. I am wet I must have dropped my water when I took a drink.
I am agitated. Frustrated feel like I could rip someone's eyes out if they look at me wrong. This is not like me. I love people usually. I am emotional tearful want to cry but the tears are dried up.

Thanks again:
Joy