new here

[nyx]

i don’t really know how this place works but... i’m 17 and have been diagnosed with absence seizures since (i think) i was 12. we never proceeded with medication because we were told i could grow out of it and had a better chance of doing so without meds. a few years later my mom and i decided to put me on medication because i had a few accidents and my parents were worried for my safety. i even fell down some stairs while having a seizure. they put me on Keppra or Auro-Levetiracetam. after an increased dosage, it seems to keep them at bay if i maintain a decent sleep schedule. i did have a grand mal seizure in march of 2021 and that was pretty scary, but other than that i don’t struggle with the actual seizure part of it.

the reason i searched for a group or something of the sort is because i’ve always been worried about what aspects of my life epilepsy would restrict me from. as a teenager now, it’s difficult to have friends and watch them get their licences and get jobs when you’re kinda just waiting in a corner alone with nobody else to confide in. there’s no public transportation near where i live. and no place that i can walk to for me to have a job. i can only rely on family members (when they aren’t working their full time jobs). i find this especially difficult. i feel like i have zero freedom. if i could live closer to public transportation, i wouldn’t feel so depressed and honestly, kind of insecure about having epilepsy. but i feel sort of trapped. like i can’t even fight back against it. anyways have a good day/night

 

[N Sperlo]

I was diagnosed with absence seizures at 16. I was having the long before. Had a tonic-clonic after stopping my meds a few times. I'm on Keppera and Trileptal, the same as you. Been working for years. I'm 35 now. I live a normal life with a normal job. I live where public transport would not get me the hour drive to work. A "normal" life isn't out of reach.

 

[kizzle]

Welcome to the site I recently just joined not too long ago as well. I had my first tonic clonic seizure at the age of 15, I'm 32 now and still regularly have them, my last batch was right after Christmas. There was a long period probably until about 20 or so when I never took taking my meds seriously but it's become pretty apparent how important they are because it's at the point if I forget a dose I'll have one about 90% of the time so make sure to make that the most important thing you do everyday. I've held several jobs since I was diagnosed, currently I've been working at the same place almost 12 years full time. There have been many times I've had to miss work because of having a seizure but you want to make sure your employer knows your situation, I understand completely the feeling of being insecure sometimes but you don't need to let the entire world know. 90% of the people who know me have no idea about it but I've found with the people I have talked to, nobody wants to hurt you, it might not be something they're expecting but people generally seem to care and would love to help if they could. They're obviously things you should not do but you know how you feel better then anyone else, for myself I will generally know if something is going to happen and how often or what time of day. I make it a rule to never leave my house until I've been out of bed for at least an hour because most of mine happen during sleep or shortly after waking up. However I still go swimming, I havn't been scuba diving since I was 15 because I don't know how the pressure change might affect my brain. I'm no doctor but it's decisions like that that you need to make for yourself based on how comfortable you are with it and how well you know your body. I hope this brings a little hope, there are many people in the world who deal with epilepsy that live completely normal lives, don't exclude yourself from that list.

 

[Sabbo]

Hello & welcome to the site! I've had epilepsy since childhood, but it wasn't diagnosed until I suddenly had grand mal seizures in 1987. An EEG showed that the "weird feelings" I kept complaining about were simple partial seizures. Now, I have simple & complex partial seizures (those began about 24 years ago). They have caused me to injure myself & burn myself severely (second &third degree) many times.
I was learning how to drive in school, but chose not to get my license when I had simple partial right before my final behind the wheel practice. At that time, I only had simple partials. I completed a BS in Info Systems & Economics, but my complex partial seizures have prevented me from working.

 

[Nakamova]

Welcome nyx! Make yourself at home.

My seizures arrived at a later age, but I have been able to get them under control and I do drive. I know I’m lucky that way. It also helps that I have a job that lets me work from home (graphic design). These days there are a lot of options for studying and working remotely, so hopefully if your seizures continue to limit your driving, you can stay connected and find work, and eventually move closer to public transportation.

I hope your friends understand your situation and can pitch in to help drive you places. I know it's no fun asking for help, but don't feel ashamed or embarrassed to do so. I like to think of a seizure disorder as if it was like diabetes or asthma -- you have to be careful because it can be serious if you don't take your meds, but you can't let it define who you are.

It's great that you've figured out that fatigue is one of your triggers. It can be hard getting enough sleep when you are teenager, but it sounds like you are on it. Metabolism can definitely play a triggering role -- not just fatigue, but fluctuations in hormones (even whether you're a guy or a girl), and things like eating properly and staying hydrated. Paying attention to your overall health is great way to be proactive about epilepsy and feel better generally.

Best,
Nakamova

 

[XxBlaqkxX]

Welcome to the forums, Nyx (I love that name - goddess of the night ^_^ ).

Sorry to hear of your struggles that you've had.

I can relate to a lot of those things - seeing your friends get their driver's licenses. Hard time finding jobs.

I remember my siblings, who didn't have seizures/epilepsy, and would be fussing at my parents that they don't take them out to drive enough. One day, I had it and just started yelling at them, "AT LEAST YOU GET TO DRIVE!" My parents never stopped me so perhaps they were glad I said it.

I had seizures starting at around 9 years of age, but wasn't put on medication until I was 14 because I only had like 1-2 seizures a year and they generally hadn't been anything dangerous. When I was 14 I had an epileptic seizure at school and there's stairs, ramps, hard tile, etc. and at that point - I think doctors were kinda like, "Well, she needs medication." So it happened.

These days, I'm in my 30s. I do still have my parents nearby and they've been more than a Godsend to us when I've had a few seizures this past year. I can't imagine them being far away. I felt more independent when I was seizure free 10 years on Keppra, but when I tried to come off of it - I was great for 15 months and then I got COVID and it's back to square one. I was so close to actually taking the driver's test so I could at least have a license in case of an emergency, but I have to wait until this upcoming August (if I don't have another one). I do get laughed at at the DMV and made fun of. "You're how old and you're trying to get a permit?/"You can test for the license any time! You're not 16 anymore!" But if I don't have the permit, how will I have road experience? It frustrates me.

I have public transportation nearby, but this area is smaller and I haven't needed it in a long time. Plus, my husband is the usual driver and if needed, my parents can usual drive me somewhere if I need it. This past year, my family hasn't wanted me to venture outside of the front gate alone or walk to the mailbox alone until my seizures are under a lot more control again.

This past year, I've felt as helpless as a baby many times and it's rough...but I do have the help I need, thankfully. Have a good specialist, have supportive family, etc. that can pick up when I'm off and can help me out.

I'm still incredibly insecure about having epilepsy, but it doesn't mean that all people are. I admire those that have accepted that is part of who they are because I haven't yet and I tend to hide it from others because of all the friends I lost in middle school and high school simply because they were probably afraid of having a friend that had seizures. It hurt a lot of times to feel so alone going to school, though. Friendships were often fleeting.

When I'm at a point where I'm not thinking about my seizures much because they are so well under control is where I feel my most confident. Also when my health is better - I'm eating the right foods and everything for me and getting plenty of outdoor sunshine I feel a whole lot like I can take on the world a bit better.

It's always adapting to the changes in life, but not everyone feels insecure about their seizures/epilepsy forever. Pay attention to what helps and what doesn't and keep focusing forward. You'll have days where you feel set back, but life keeps on rolling.

I do hope you'll have a lot more better days soon

 

[Porkette]

Hi nyx,

Welcome to the forum! I can relate very well to how you feel. I started having absence seizures when I was 10 yrs. old (59 now)
My Dr. told my parents I would outgrow the seizures but I never did by the age of 12 I started having complex partial seizures
along with absence seizures.

I used to live in the country where there was no form of public transportation and I have never been able to get my license. In
NY where I live you have to go 1 yr. without a seizure and have a Drs. written statement saying it's okay for a person to drive.

One thing I learned that helped stop a lot of my seizures was the way I ate. I found out if I drank diet soda that would trigger
seizures because the nutra sweet causes electrical activity in the brain.

Have you ever heard of the ketogenic diet, it's a diet that's high in fat but low in carbs and starch foods this diet has been out
since 1927 and it helped me out a lot. If you like cheese and foods high in fat you may want to give this diet a try.

Also if you haven't started keeping track of your seizures get a calendar and write down what time you had the seizure and
the type of seizure you had, by doing this your Dr. may see a pattern in your seizures as to what days of the month they
happen the most. I have more seizures in the fall and winter because of the lack of seritonin my Dr. calls them "seasonal seizures".

My Dr. told me to start using cbd oil and that was a big help reducing my seizures. You may want to talk to your family and Dr.
about using it if you are interested.

I wish you the best of luck and May God Bless You,

Sue

 

[Sabbo]

In my case, I attempted to work after completing my BS and again a short time after my older son's birth, but 2 very dangerous things happened. Once, I was at the commuter train station & had a complex partial. The presence of another person is what kept me from falling onto the train tracks. The second time I had a complex partial around work was just as scary. I had just exited the downtown building & collapsed almost right in front of it due to one.
Both times, I "came to" at the hospital, in the ER. After that second one I decided that working outside of the house just wasn't feasible.
My husband does most of the driving. My mother lives only 10 miles away & cares A LOT about the fact that I'm basically homebound. She comes over at least once a week & will definitely pick me up if she has to shop anywhere near my house, even if it means going slightly out of her way to get me.

 

[Plasticmask]

Welcome, and know that EVERY person I've met here is SUPER NICE, and will be quick with GREAT advice.
Not me, of course, I joined pretty much for the same reasons that YOU joined.
I guess really that I haven't been the 'newbie' for a long time, but it hasn't been THAT long it's just that about a hundred people it seems like, have joined since I did.
So anyway, take a seat and by the way, that door doesn't have a lock on it; you can come by ANY time.
Nice to meet you!