Epileptic Singer in a band.

[Jade]

Hey, i'm jade. i found this forum on google as i was researching what i might have since my doctors can't figure out what type of seizures i'm experiencing or where they come from to be more exact.

I've been experiencing these "outer body experiences" since 5 until one day i couldn't move or speak and i found myself frozen on my bed for what felt like hours. (sleep paralysis)
and from this moment on i would see strange lights and would always claim to talk to "lights" or an angel" or something.
...it continued for a while, but ignored.

then at 8 yrs old.
I was walking down my stairs with my backpack on ready for school and in one second i Just fell into a seizure (my mom caught me) as i was seizing i remember knowing exactly what was going on and even actually seeing myself from above having this. *at this time only my legs would cramp up.
(same angels)
* my mom took me to the doctor, they didn't believe i had an episode so dissmissed it and took me to a therapist that concluded i have anxiety where i was prescribed paxil.

at age 9
it happened again several times.
i remember them all.
the seizures began to get worse and worse. full body seizing but still complete conciousness and i always got an aura right before so i would scream and my parents knew i was going to get it.

the list goes on and on...
my point is countless eegs my results always normal, lights don't trigger it.
I've been on depakote and am currently switching to lamictal.
every time they wing me off i experience the auras again but no seizure and every time i try to get one on tape it doesn't happen. even with sleep deprivation. could this be spiritual?

*also i have panic attacks alot too. mostly get the panic attacks right when i get an aura...and during the aura i see the "light" that talks to me again.
please help me i can't be normal like this without answers. i can't even drive yet. I'm in a band i need to know that im safe when we tour...

 

[jyearta]

welcome,

I think you will be glad you found this forum. I have gotten more answers to questions here than with any Dr.

I too have déjà vu before a seizures hits me.

My seizures are somewhat different than yours.

I too will know who is talking, understand what they are saying, and will know where I'm at. However I can not respond.
I will swallow hard for several times, and will have lobster claw like movement in my hands.

I have partial to complex paritals.

I had many EEG and MRI all came back normal until 2004 when I went to a teaching hosp. their equipment is more advanced.

Hope this helps you in some way.

Do you keep a diary? noting everything such as your aura, seizures with date and how long they lasted, sleep pattern, foods, any new meds. even over the counter, infections there are more triggers than the ones I've mention.

 

[arnie]

Welcome! Many of us, myself included, have normal EEGs, normal brain scans, and don't really have any specific seizure triggers. Although partial seizures can do very interesting things to our experience of the world, and give us spiritual or mataphysical insights and sensations that others may not have, I tend to think they are not spiritual in origin but are "simply" an electrical or electrochemical imbalance in our brain. Many great mystics, artists and authors throughout history are known or suspected to have had epilepsy, so there certainly seems to be a connection somewhere between epilepsy and enhanced awareness.

As for the "panic attacks", many times a very panicky feeling, or a feeling of fear, accompanies an aura, or a partial seizure, but it is not necessarily what would be classified as a true panic attack in a clinical sense.

Finally, as to feeling "normal", sometimes we have to get used to what is normal for us and be comfortable with that. It may take a lot of time for that to happen though. Keeping a record of when your seizures happen can be helpful in that adjustment.

(I've had diagnosed szs for over 30 years, and probably undiagnosed ones for most of my life.)

 

[Nakamova]

Hi jade, welcome to CWE!

It's quite possible that abnormal brainwabes haven't registered on your EEG tests because they originate too deep in the brain or are too fleeting. And photosensitivity is a trigger only in a relatively small percentage of epilepsy sufferers. So epilepsy isn't necessarily ruled out.

Since you've experienced "out-of-body" sensations and "seeing yourself from above", it sounds like you may be having seizures emanating from the angular gyrus. See: http://www.nytimes.com/2006/10/03/health/psychology/03shad.html?pagewanted=all&_r=0

I hop you can keep pushing neurologists for proper treatment. If the anti-seizure medications help then the docs should take that into account when diagnosing, and continue to prescribe them.

Best,
Nakamova

 

[Jade]

Well yes i've kept a diary.
each one states what kind of seizure it was whether it was just arms seizing...legs or full body. also i note down what i was doing right before, how i felt after and more or less what the aura was like... it's really hard for me to describe my auras i mean its just this sudden rush of "OMG SEIZURE" i can't describe it. i just know.
and my doctors want ruled out that they were frontal lobe seizure..they now think it's focal so they've been trying to get it on tape with the home eeg's and even the 5 day hospital one's with no sleep. they try everything they can to provoke it so they can find where it comes from. still nothing. but i think it can come from the fear section in my brain since every time i've gotten a seizure it's either in my sleep or right in the morning. still dreaming. let me know what you guys think or have experienced. this website is amazing. thank you all.