new to forum

[karen24]

Hi all,
I don't have epilepsy but my daughter does. She was diagnosed at age 12 with primary generalized epilepsy. No known cause. No family history of epilepsy. They keep saying it is genetic, but I don't see that. She is now 17 and entering her senior year in high school. She was put on keppra at age 12 and her seizures are well controlled. Thankfully the keppra has not interfered with her studies; she has a 3.9 GPA with all honors and AP classes, a varsity athlete and will be heading off to college next summer. We have tried very hard to make sure that what she can't do in life doesn't interfere with what she can do! Driving is a huge issue in life. But there are millions of people who live in big cities (NYC) who walk and take the subway. We want her to know that she controls HOW her life will be. If after college she has to move closer to her job, ride her bike to work, walk, take the subway...until she can drive again. There are always options. Don't let Epilepsy run your life. Ok, now for my question, Last summer, she had two episodes of getting up in the middle of the night to go to the bathroom. Then while in the bathroom, fainted and convulsed. Each time, we found her next to the toilet passed out, convulsing but then no confusion afterwards. Has anyone experienced this with epilepsy? She had a slightly positive tilt table test and we are headed to Mayo clinic at the end of the month. Just a worried mom. BTW, moms worry all the time when their child has E and the worry can consume you, but don't let it. Concentrate on all the times nothing happens and be thankful. Just my advice. I'm rambling sorry...it's late. Thanks for listening!:hugs:

 

[jas]

Hi! I'm 19 and though I was just diagnosed with complex partial seizure disorder last year, it seems that it developed when I was around twelve as well. In addition to that, there is no known family history either. I go to college in DC and where I will be entering my third year, so I'm thankful that I chose a place with easy public transportation. I came home for summer, however, and it has been absolute torture driving this summer. I really can't take it lol but your daughter sounds amazing. She'll definitely continue to live with epilepsy well. I'm glad Keppra works for her. It was the first medicine I was put on and it never worked for me. It just made me grumpy...but the other meds give me acne so now I look like I'm going through puberty and I'm almost 20 :/

 

[karen24]

college looming around the corner

Hi Jas,
Thanks for replying. I'm new to the forum and not sure if i am doing it all correctly. Weird isn't it that the docs say it is genetic but can't seem to find anyone in our history that had Epilepsy. I just pray every night for a cure someday. Can I ask you some questions about Epilepsy and college? These are things I have been thinking about for my daughter because she only chooses to tell close friends about her Epilepsy and I respect that.
When choosing a dormmate did you disclose your epilepsy? Did you have any sleep interruptions/sleep deprivation issues living in a dorm? What about getting up to use the bathroom at night? Was that an issue for your epilepsy?
Also, I worry about the noise in the dorms late at night and having my daughter get a good night's sleep. Any information you can give me about attending college and epilepsy would be greatly appreciated.
Also, I lived in DC when I worked for the FBI decades ago and I remember the traffic. It was horrible, but at least you can drive so that is a blessing. Stay well!:hugs:

 

[jas]

Hello
I'm also new to this board. I felt inclined to comment because I know how much my parents worry about me, especially since it's fairly new in my life. We're all learning about epilepsy together as it happens day by day.
I was diagnosed my sophomore year and it just so happened that I lived in a single dorm without a roommate. I, too, only shared it with my closest friends, but they checked on me pretty often to the point that it was almost aggravating but I definitely appreciate and respect that. I also shared it with one of the graduate assistants who was in charge of the building but I was also very comfortable with him. Your daughter should definitely share it with her roommate! Just so they can be aware and not freaked out if she has an event and needs their help. It's pretty intimidating to feel compelled to tell a complete stranger these things but it definitely helps and most people aren't as judgmental as we imagine. Typically, everyone's response to me has been that they had a family member with epilepsy, trying to assure me that they understood and had dealt with it before.
As far as dorm living goes, I was never interrupted out of my sleep and the sleep deprivation had nothing to do with living in a dorm lol. Getting up to use the bathroom was never an issue for me and I hope your daughter doesn't go through that again. Just be sure she registers with her school's disability office. My grades dropped a bit when I was diagnosed. I didn't want to get out of the bed at all, much less go to class, and when I did I barely paid attention. I was way too prideful to go to the office; admitting I had epilepsy was just something I had no interest in, but now I found out that professors would have been more lenient with me had I registered.

I hope this helps. Feel free to ask me anything you'd like.

 

[karen24]

thanks for sharing that info. We've always controlled her sleeping environment so knowing that she will be on a hallway with lots of other people tends to make me a little nervous, but I know she will do the best she can. We will definitely make sure she registers with the disabilities office (I hate that word cuz epilepsy is not a disability but rather a condition) We keep reminding her of that. There is nothing wrong with your brains. It is just when certain conditions are present, your brains act differently. Our daughter has been lucky in that she hasn't had but three or four seizures since age 12. She can't be around strobe lights either. We're hoping she will outgrow that part of it, cuz she loves concerts. But Hey, we saw Jason Aldean at an outside concert and it was fantastic so lesson to her was you can still go to a concert, it just has to be an outdoor one where you don't see all the flashes of light.
We have this posted in our house. Maybe it will help you at times:
DON'T LET WHAT YOU CAN'T DO, INTERFERE WITH WHAT YOU CAN!!!!!!
hugs!:hugs::hugs: