Not given any real answers
 

[Garney] 3:21 pm: Hello, new to all this. I am 47 and had my first seizure on Oct 2. Since then have had 4 more.
Have had all sorts of tests done. Dr. says all ok. Going for second opinion to Mass General. Picked up all
bloodwork and MRI done. Not all bloodwork was normal and MRI states three/four small white areas but they were
not sure of any signifigence. When having seizures, I feel different right before they happen. Told I have glazed
appearance, right hand curls up, can not communicate, right sided weak
[Garney] 3:25 pm: the weakness lasts anywhere from 4-24 hrs. When can speak again will say same word over
and over. I have been on Depakote, then Keppra, now Dilantin. At times can not remember words or will mix up
what I want to say. Any one else going through same, or have any thoughts?::confused:

Hi Garney,
Welcome to the forum. I'm no Dr. but it sounds like you may be having simple partial seizures where you feel funning that lead into a complex partial seizure or a petit mal (absence) seizure. This happens to me a lot.
I start to get a funny feeling in my stomach like butterflys, then I look around the room but I'm not sure where I'm at during this time I'm totally conscious then all of the sudden I will blank out and if I'm talking to someone I will no longer speak that's when I am having a complex partial seizure.
My neurosurgeon and Epileptologist(Dr. specializing in epilepsy) did many tests on me and they found a scar on the right temporal lobe of my brain. I had surgery done to help reduce my seizures where they used ultrasound and it destroyed 75% of the scar tissue but the rest of it they couldn't get because it was to deep in the brain and I could have lost my sight.
My advice to you is to get a calendar and write down what time you have a seizure along with a discription of the seizure. By doing this your Dr. may be able to see a pattern as to what time of the day or what days of the month you are more likely to have any seizures.
Stay away from anything with nutra sweet (aspartame) ex. diet soda because it's been proven that nutra sweet causes more electrical activity in the brain which can trigger seizures for some people. Also try taking vitamin B12 once a day it has done wonders for me cutting back on the seizures.
Here's a couple of web pages if your interested

www.epilepsy.com
http://www.neuropat.dote.hu/neurology.htm
When the main page comes up click on epilepsy or do a search.

Here's wishing you well and May God Bless You!

Sue

Thanks for info
 

Thank you for responding to my message. I have read some of the material on the sights you suggested. Can't read a lot at once because the screen bothers me now. And too much reading also bothers me now. Hoping to find some sort of answers at Mass. General.
I did start writing things down that I could remember, and also what my husband has told me.

Thank you again,

Cathy

Have your MRI looked at by a neurosurgeon. Neurologists are not trained in abnormalities of brain structure or development of growths or other lesions, and they can't determine if surgery is necessary nor perform the surgery. Only a nsg can tell you any of this.

Good luck...

LIZARD :)

Thanks for information
 

Lizard,

Thank you for the information. I am waiting for an appointment from Mass General. I have sent them all my test results up to date. They will look at them and decide who I should see. I will ask if the doctor is nsg. I am also waiting for my dilantin level. Monday, when saw Dr. he said I looked out of it and could be toxic? Called this morning haven't heard back yet.

Thanks again,
Garney

Hi Garney,
If the computer screen bothers you along with reading for a long period of time you may be photosensitive, that's when certain colors or bright lights can trigger a seizure.
When you see your neuro again you might want to request to have a specialized e.e.g. done where they will flash different color strobe lights one at a time to see if certain colors trigger seizures. When I had this done I found out that amber, florescent green, and bright white were the 3 main colors that triggered seizures for me. Here's wishing you well and May God Bless You!

Sue

Really, Sue? I thought they always used white strobe lights. They do on me at least.

Make sure to keep us updated Garney! *Hugs* I hope things get better for you soon.

Stressed out
 

Porkette and Ellie,

Thanks for the responce. I will tell the Dr. on Mon about the screen bothering me, along with the florescent lights at school. I was not feeling well a couple days then broke out with red spots (4 so far) Have been told that I have shingles, and put on meds for it. Told would get worse before it gets better.:eek:
Well, hope you both are having a good week!

Garney, how long have you been on your current AED (seizure med)?

Make sure if you are new to the med you tell whoever prescribed them about your rash - as a rash that looks similar to shingles, hives, etc. can be a serious side effect.

Garney I hope things are better today. When is your appointment?