Hi all,
I am new to Neuro Talk, and was just looking to find some people out there who have similar problems so that I don't feel so alone in this world. I have had epilepsy for 7 years (I am 30 yrs old) all of my witnessed sz have been grand mal's. I have been on generic tegretol forever, and my last actual witnessed sz was 3 yrs ago. We know I am having sz in my sleep, but have only witnessed one. I have these strange spells where I am really sensitive to loud noise, and I end up kind of going into auto pilot...I am not really aware of what is going on but will continue doing tasks, and somtimes even answering questions...not always do the answers make sense, I don't remember these spells I only remeber feeling like I am out of control, or an intense tingling sensation in my shoulders and neck. I am dizzy almost all the time, and my memory is completely shot, and I am just plain tired of being this way.

Hi kcurf,
Welcome to neuro talk! I've had absence, complex partial, and tonic clonic (grand mal) sz. for 37 yrs. I've had 2 brain surgeries to help reduce my sz. If you are tired all the time the tegretol may be at a toxic level and you should get your drug level checked. If I were in your place I would start taking keppra to control the sz. it's done a great job for me. It sounds like you have both audio and possibly visual sz. that's where sounds and certain colors can trigger sz. for you. My best advice to you is go to an Epilepsy Center and see an Epileptologist (Dr. specializing in epilepsy) I've had a lot more success with them than any neuro over the yrs. The Dr. should do a special e.e.g. on you where they will flash one color strobe light one at a time by doing this they can find what colors are triggering your sz. They will do the same thing with sounds. I found that florescent green, amber, and bright white like the sun shining on the snow are the 3 colors that triggered sz. for me. Try taking vitamin B12 1000 mcg. once a day it can be a big help and stay away from cell phones and nutra sweet they can trigger sz. also.
Here's wisihing you well and May God Bless You!

Sue

I've gotten to the point where I simply don't attend noisy functions, or go any where that I know it will be noisy. One time I actually chewed my brother in law out, which I don't remeber, and my husband finally took me out to the car to take me home, which I also don't remember....I was in a daze for about an hour. That was one of my worst episodes...or so I am told...I remember certain things from it...but its that "there but not there thing."

I would love to see a epileptologist but here in the middle of no where the closest one is 9 hours away. My nuero just had me see a nuerophycologist, and I felt I did pretty good on his test, but it stressed me out so much I have been just out of it for 2 days...driving or riding in a vehicle does this to.

I would like my nuero to change my perscription...have been trying to get him to for 2 years, but he thinks that if I am not having grand mal's we should stick with it. I'm just frustrated with being this way...out of it (foggy, irritable, exhausted, baaaad memory) for a couple of days....then clear for a couple of days...I wish they would decide what is wrong with me.

kcurf,

I do not have any words of advice... but my little brother has epilepsy, and has been to specialists all over the country. I know your pain (well he REALLY knows your pain), as I've seen him literally grow up with this. He's BEYOND tired of it and feels deeply cheated out of a "normal" life. You are not alone! I wish you well. Keep your chin up. (easier said than done, I know).

-Karen

Thanks to both of you...It makes me feel better as long as I know it's not just me. I just feel that way some days...and sometimes it turns into some weeks.

Thanks

i too feel cheated out of a normal life.I just cant share these crazy thoughts with anybody.I cant even tell my epileptologist most of these things or my psychiatrist.I feel certain they would put me somewhere or feel obligated to turn this over to child services and take my kids.I am not physically or mentally able to fight that.Im already fighting foreclosure with a good atty and havent paid a credit card in 8 months.Thats hard enough to deal with.

Hi Kcurf & Mel,

I just want to add my support. I can understand at such young ages why K's brother and you Kcurf & Mel feel cheated. I don't feel cheated, it's just the way life is plus I am much older. I don't like it but I have to deal with it. Maybe having it for so long one just gets used to it? Or the depression, anxiety & panic meds make me just not care?

Anyhoo, there are plenty of caring people here to offer help & support,

Cheers,
Rhiannon