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New to Epilepsy
Wed, 05/13/2020 - 19:09I 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!
- Derrick
Comments
Hey there, my seizures also
Submitted by Believer_59cd4d81a99cf on Thu, 2020-05-21 - 23:19
Hey there, my seizures also seem to be hanging around after a brain surgery, so I've asked a lot of those questions. I've tried to come off meds a few times, unsuccessfully unfortunately. However, being on medication doesn't mean you have to give up all your hobbies and interests. Many people are able to achieve great seizure control with regular medication. It's important to find a neuro who you feel hears your questions and understands the goals and lifestyle you want to maintain. but you've learned one thing already about seizures; there are a lot of questions that don't always have a clear or obvious answer. It hasn't been very long since your seizures, but if you feel the meds are still intolerable after a number of weeks or months, that's definitely something worth discussing with your neuro, and second opinions are always an option. All in all it tends to be a learning experience as you figure out what works for you by trial and error. Yes it's likely that there are some things that will always be a little different, but it does get better.
Thank you! Its so helpful to
Submitted by Dnedzel on Tue, 2020-05-26 - 13:26
Thank you! Its so helpful to know that I am not the only one struggling with these questions and issues!
Hi,Thank you for posting.
Submitted by Anonymous on Fri, 2020-05-15 - 09:35
Hi,Thank you for posting. Gianna has shared some wonderful resources and advice in her comments. It’s important to remember that you are not alone, and we are here to help support you. Our new to Epilepsy & Seizure tool kit is a great resource and starting point for learning about what epilepsy is, what resources are available, how to make the most of doctors' visits, and how to take control of seizures, seizure first aid& safety. Learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsy . Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, contactus@efa.org. epilepsy.com/helpline , or contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates