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rousseaux19

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Hello! My name is Ryan and I am currently a college student. I have had Temporal Lobe Epilepsy since I was 13. Generally, I deal with having this condition remarkably well. But every once in a while I get depressed when I think too much into what having epilepsy is keeping me from doing.
At one point, I went 15 months without having a seizure while I was on monotherapy with Lamictal. It was a great time for me! I started driving and learned that driving is one of the major things people take for granted in life. But at the end of those 15 months I had a seizure while driving and got in an accident. It was a bad time for me. After the accident I started to feel like no one around me could understand what I was going through. So recently I just keep my problems with having Epilepsy to myself. And like I said, generally I don't have a problem with it. But occasionally it brings me down so much to the point where I have broken out into tears.
So I plan on browsing the forums here to see what other people go through and to learn how they deal with it. Hopefully it will be of help to me!
 
Hi Ryan, welcome to CWE!

I'm glad you've found us -- CWE members "get it" about epilepsy and it's frustrations. Feel free to post, chat, and vent as needed.

Best,
Nakamova
 
Hi Ryan,

Welcome to a great group of people. Everyone supports each other, offers suggestions etc. You'll love it.
 
Welcome to CWE Ryan,
I read you're story and see many similarities to my own. Brought down into total depression upon the things I have learnt I just cannot do because of the problems Epilepsy has brought me.
Probably the one thing though I have never been able to do is hold a license to drive. A 42 year old who has never driven a car in his life because I was diagnosed before the legal age to obtain one. Now I do not see this as a disadvantage but a plus. Never having one means you don't have that privilege taken away so what can you really miss in the first place. Talking to a friend who has encountered this because of his epilepsy I see it can be a very difficult experience so best of luck with having to deal with this.
Also, don't be afraid to talk of you're problems if you feel you need to open up. Here, family and friends. People really do want to understand.
Best of luck with you're studies.
 
Hey Ryan,
Welcome to CWE. My daughter began to have tonic clonic seizures about the same time as yours began. We tried medication but her issues only became worse. So we opted for making some nutritional changes, and began neurofeedback therapy.

It hasn't been a quick fix, but over time she is slowly improving. She has now been seizure free for 10 months (med free). Though she has yet to drive, she finds her way around SoCA via our public transportation system (not the best, but adequate). Our law is 6 months seizure free, but I have asked her to wait 1 yr. .

I realize she has never tasted the freedom of having a car, but I do think at times she has been quite happy not to have the responsibility of one. She is an athlete so the walking is something that comes easy to her. Her independence was much more important to her.

Have you tried any alternative therapies to perhaps raise your seizure threshold?
 
I have tried other medications.
Trileptal and Keppra, both of which did nothing for me
Edit: Also, alcohol and street drugs are terrible for anyone with epilepsy.
Also, I went to the Mayo clinic and stayed in St. mary's hooked up to an EEG machine until I had a seizure. This was just to prove where my seizures start (Left Temporal Lobe)

Honestly, I'm still too afraid of driving again because of the accident I was in. I am always very thankful that I decided to go to a friends house instead of being on the highway. Had I gone on the highway I would of had a seizure going 75 mph.

This is my opinion, but if I had a child who had epilepsy and wanted to drive I would make it very clear what the risks are. At the time, I was 18 and I thought it wouldn't happen because it had been 15 months since my last seizure, and I was a stubborn 18 year old. But I never thought about how if I got into an accident it would also affect my friends and family. Basically, the freedom of driving took over and became the thing that I loved most in life.

Sorry I'm writing so much but a couple more things!

I didn't realize it till after I couldn't drive anymore, but the thing I loved the most about driving was having the ability to be alone and in control.

All of my opinions are subjective but I hope this helps!

Major Update: Let her know about the positive effects not driving can lead to. There's usually someone who can give you a ride. For me, this has lead to making new friends! And although I get down sometimes, I have learned to deal with it better. The public transportation is Colorado is not very good. So now I walk a lot more, and I even bought a road bike! I also got a gym partner which led to me losing 30 pounds of fat! But I'm working on building muscle now. I've developed a more healthy lifestyle, both by eating healthier and excercising more. Ever since I started doing this I haven't had a seizure. But then again, everyone is different!

This is my experience and I really do hope that it helps!
And I will add your daughter to the prayer list at the Jesuit Institution I attend :)

-RR
 
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