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Valour
New Member


Date Joined Jan 2006
Total Posts : 10
   Posted 1/25/2006 11:11 AM (GMT -7)   
I was lucky to be part of this site a few months ago then I had to go in hosp. and have VEEG done at a Epilepsy Clinic in London ON Canada (Yes I am Canadian) I was on here as Sheena before....and met lots of fantastic people, now I am back with a dozen more questions and lots more info!
So briefly then lol. The VEEG showed abnormal activity all the time in my brain day and night. I had 2 grand mals while I was weaned off the meds and lots of little ones so they got lots of info.I had sessions with a Neuropsychologist and testing as well. Some areas of the testing I was the highest score they had seen, but the memory areas were quite poor (left temporal lobe stuff) So they sent me for a sodium amatal test where they feed a catheter from your groin in the fem artery to the brain stem then they first freeze one half of the brain then the other you remain awake and have to do visual and memory testing on both sides of the brain. So I went and had convulsions on table and they said was aggressive and trying to pull tubes out...I blacked out so I dont know! When I left London after VEEG done I switched to the NEuro. there I was so impressed with him. Well I left on trileptal and dilantin then he switched me to dilantin and tegretol. THis was last July well I could not reach him until my doctor had to take over in December finally and he got an appt. for me. I have been having daily seizures, partials, deja vus and usually 4- 5 cp's where I have total loss of cons. Because I had to wait 8 months to see a Neuro again I had decided and told my family that I wasnt gonna pursue subdurals or possible surgery now because I had lost trust and faith in the system. Well.......I saw Neuro yesterday, he apologized again and again and said it was wrong and shouldnt have happened! No kidding! lol. So I said that gee can you see why I am terrified to have another sodium amatal again....noone even got back to me to let me know what happened to me.....he said it was a seizure and that I needed the test again and to have the subs implanted in the clinic because the seizures are coming from 3 spots left frontal right frontal and right temporal. They have to see for sure if it is 1 spot and they are jumping all over or is it just left temp, like they first thought. So of course I relented and agreed to all again. I asked him if I could leave it and just switch some more meds around but he said that he is worried that I may have 1 big seizure......can any of you help explain to me what he means by that>..what is 1 big seizure and the conseuences....does he mean like a part of the brain shorting out so to speak???O am sittining here and I am worried because I didint ask him to explain what could happen....but I did agree to have the SA test done again even though I am shaking already!!! And I will go back to the clininc and have the subs implanted. AAAHHHHH!!! He raised my tegretol up and raised my amitryptilline actually doubled it for my numerous countless migraines!! lol. Sorry to ramble I am just rattled today because everything I thought I wasnt gonna do I am gonna do and I had made that decision .......but I have to pursue it. If it is the 3 focal points they cant do surgery I guess he said and if it would interfere with memory they cant? Does this sound right?? Sorry here I go again.....I have missed this site so much....good luck and health to all of you!And thx for listening.....Sheena tongue

dry
Regular Member


Date Joined Sep 2004
Total Posts : 24
   Posted 1/25/2006 1:01 PM (GMT -7)   
Dear Sheena and anyone else suffering from this disease, please check out this site for epilepsy it is www.Healingwell.com  I and many other volunteers and participants will be working to support those like yourself and many others for a prayer and hope for a future cure. God Bless you and stay strong, for I will pray that you will go through these needed tests with little or no pain and keep venting it will strengthen you as well it will us who support your wellness and healing.

Post Edited By Moderator (~Jennifer~) : 1/25/2006 2:00:03 PM (GMT-7)


Valour
New Member


Date Joined Jan 2006
Total Posts : 10
   Posted 1/25/2006 1:02 PM (GMT -7)   
Jennifer,
thx for your response I am gonna try to e-mail you .....I am assuming I use my regular msn and send it that way right or is there a way thru this site? I will try now anyways lol ( I am terrible on the computer and the E makes me worse ha ha ha!!) Sheena

Valour
New Member


Date Joined Jan 2006
Total Posts : 10
   Posted 1/25/2006 1:17 PM (GMT -7)   
thank you Dry for that website and the kind words I really appreciate all the positivity from you all there.:)Sheena and good luck to you!!
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