I had my first seizure at age 60, this past April 16th, 8 months after meningioma surgery which the surgeon says went very well. He was surprised that I had a seizure, but said that the scare tissue formed from the meningioma does, sometimes, become a trigger point for seizures. I had multiple, back to back tonic/clonic seizures, my wife called 911 who took me to the hospital where I was sedated and put on a ventilator for a day and a half. I am back home, on Keppra, and trying to figure out how to live with epilepsy - I have been told that since I had multiple seizures, one after the other, I have epilepsy.
I didn't know it was coming on, my wife said I was confused and completely lost the use of my left hand (this happened before the surgery as well), I have no recollection of the event or immediately before it. I am on 3000 mg of Keppra, from what I have read this sounds like a large dosage, especially considering I am a small guy: 140lb, 5'6". I have been pretty dizzy and have a lot of fatigue. I am normally a very active guy: Mountain Biking, Hiking, Rock Climbing. Of course all of that is off for now, which is very frustrating.
My doc says I will be on meds for a minimum of 3 years, couldn't tell me if this is something i will have for the rest of my life or not. I'd like to discuss the possibility of reducing the Keppra dosage, she says she has prescribed it for other people at this dosage without side effects. Hoping to get her to consider it after I have been on it a month - thats the end of this week.
This is all really new to me, and from what I have been reading, it seems that epilepsy is different when caused by a trauma, versus a chronic condition you are born with. By the way, that has to be just awful, I am so sorry for people who have had to deal with this their whole lives. But I am trying to understand how to deal with my form of the disease - - Is this likely to last for the rest of my life? - Is there anyway for me to know a seizure is coming on? I didn't know I was having my first one, I was just out. - Do I need a medic alert bracelet? Should I carry first aid instructions on a card in my wallet? - Do I need to educate my climbing, biking, hiking partners and my wife on first aid incase I have a seizure? - I love mountain biking, hiking and climbing in the back country in Colorado, Utah and New Mexico. Do I need to avoid this for the rest of my life? Will I have a sudden, tonic/clonic seizure in the back country and die before I can get treatment?
Doc seems a little reluctant to give me answers - I get that there are a lot of unknowns here, but I was wondering if there is anyone here who has gone thru similar experiences and maybe could share their experiences?
thanks, in advance, for anything you can share!