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KyWells

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My name is Kylie Wells and I am 20. For now that is all of the personal info i want to give out. I watch to many crime shows. I have had epilepsy for 5 years and been on the drug trileptal (oxcarbazepine) for 4 years. My mother calls my seizures "auras" because they arent grand mal and last for less than 5 seconds. I have passed out 2 but do not remember if they were connected to a seizure.
When I have a seizure, I hear my name being screamed, and then my right side goes numb. I cannot form a sentence nor can I hear anyone talk to me. Sometimes I also hear a song in my head. Even though I have been on the drugs I still have them. Its frustrating to have a doctor that is convinced that its epilepsy but doesnt change his ways. I have had at least 5 EEGs all coming up slightly abnormal.
We dont know what would have caused my epilepsy to start. All I can remember is sticking my finger in a light socket by accident, nothing serious enough to hospitalize me. Its annoying to think that it may not even be epilepsy and it could be something worse.
I dont really know what I am looking to find on here. Maybe some advice, or someone with a similar situations. So any reply would be great.

Thanks, Kylie
 
Welcome Kylie

What you've described does sound like it could very well be epilepsy. I'm curious why you might think it's not.

A lot of the time it does start for no apparent reason & it can also stop for no apparent reason. You did mention being electrocuted though nothing big. You have to remember that epilepsy is when an electrical neuron in the brain misfires so it makes sense to me that being electrocuted might cause those neurons to misfire and cause epilepsy.

Your mom is right in that your type of seizures are often auras when they're before a larger seizure but when they're alone then it's considered a seizure, just a smaller one.

Take a look around the site and see what other people have gone through. I'm sure you'll find a lot of things you can relate to. Maybe check out The back fence first. One (or more) of the questions might relate to your experience.
 
Hi Kylie :hello:

Mine started out of the blue when I was 45, so not unusual. You will find many helpful people here, so I hope you can relax and enjoy being here.
 
Thank you all so much for the reply's.It means alot. The only reason I do not think it is epilepsy is because i have been on the meds for 4 years and still nothing has changed. I have not done nearly enough research as my mom has. But my body and the little research I have done just doesnt scream epilepsy at me. Thank you for all the links. I am going to have to spend some time looking at them. I cant thank you enough for replying.
 
Sadly just because your meds aren't working doesn't mean you don't have epilepsy. Somewhere I read that about 1/3 of people with epilepsy cannot control their seizures.
I've had seizures all my life, been on at least one type of pill since I was 3 but I still get daily seizures.
They are worse if I don't take my medication. The thing you have to remember is that epilepsy is not like the cold or flu where you take your medicine & it's cured. The best that anyone can do right now is to help control seizures. Some people are lucky & they are minimized to a great degree but others like me can lessen them but I still get them every couple of days or so.
 
Out of no where I had a grand mal seizure and had to be rushed to the hospital. They still don't know what caused the epilepsy.

I've been on all sorts of different meds and doses (and still am) and I'm still having seizures. They aren't as bad as the ones that I was having when I was first diagnosed.

I have little siezures like the ones you described too.

Ask lots of questions here and you'll be sure to get lots of answers.
 
Hi Kylie,
you are about the same age as my daughter, she is 19 and her seizures began about 5 yrs ago.

My daughters have been tonic clonic, though she did have some other varieties while taking medication. For Rebecca the meds actually increased seizure activity. We tried 4 before I was convinced this was not the best route to take for her.

We began making nutritional changes and slowly have watched her seizures reduce in number. When taking meds she had approx 6 seizures each month. Now she has gone 8 months seizure free.. and counting. Med free....

Her system seems to be very sensitive so we eliminated additives, control blood sugar levels, reduced gluten, and casein, soy and corn in her diet. She eats smaller meals more often. She also was more likely to have a seizure during her period, and she still does not feel well during that time, but her seizure threshold is raised so she no longer has a seizure.

I am a huge advocate for nutritional approaches. The health of the gut, and how the gut and brain are connected. It is difficult to find doctors that are willing to consider this because they are just not trained, but once you do it is such a relief. Rebecca's doctors can no longer challenge the fact that making the nutritional changes has been the #1 reason she has improved.

I suggest that you read up on how it can affect neurological health. My daughter has a heterotopia in her brain and that was always pointed to as the cause. But she was fine for 14 yrs. You might have had some nerve damage, but there is something called neuroplasticity and many times the brain has been known to rewire itself.

I suggest you look at some of the articles in The Library of this website. There is some great info in there.

Glad you joined us.
 
Thank you all for your kind words. However, I have a confession. As far as my parents and doctor are concerned I haven't had a seizure in almost a year and a half. But in reality I had one yesterday. I was just so frustrated and probably in denial about the whole thing. Also, turning 16 is when you get your licenses. Its every child's dream. But I couldn't get it until I was seizure free for a year. So I just told my mom that they Meds were working and that I haven't had one. Maybe thats why I joined here, to confess to people who understand. I dont know what to do. I am so far into this lie that I feeling guilty. But telling the truth now will have repercussions that I dont even want to think about. I also just felt so guilty of having my family drive me everywhere because I couldnt. Every time I have a seizure I just get more angry at myself that I cant control them or do anything about it. I just feel that there has to be more of an explanation to it all. Ugh. I know what I am doing is the most horrible thing a person can do in my position, but my stubbornness and independence took over. I am just super duper lost.
 
I remember being told I won't be able to drive because of my epilepsy. Of course that meant I could also move to any country & not get drafted.

As far as your situation goes, I think you really should do something to ensure that you don't have to drive. I know how awful it feels since I wasn't allowed to at your age either but if you have an accident due to a seizure think of how bad you'll feel, especially if someone else is hurt.

I think if I were in your position I'd say that I had a seizure but more recently (like last night). I can't think of how that white lie might make things worse but will still get you out of your bind.
 
I've struggled with the same thing -- whether or not to be upfront about when I've had a seizure. I haven't always been honest, or stopped driving after a seizure, but my current policy is to do just that. I'm not prepared to deal with the worst-case scenario (i.e. seriously injuring someone else if I were to seize while driving). Something to consider.

It's great that you were seizure-free for a year and a half. As far as your recent seizure goes -- any ideas about what brought it on? Was there a particular trigger? Did you miss a dose of meds? If there's nothing obvious, then it might be a good idea to check in with the neurologist about reviewing your dose/meds.
 
Oh sorry, maybe I wasnt really clear in my previous post. I havent been seizure free for a year, or in fact ever. I only told my mom that I was in order to get my license. I know lying to your doctor is the one thing that you should never do. But I hate him. I am still in the pediatric ward because I was 15 when I first saw him. I dont believe that he cares any more.
And Nakamova, I have no idea what brings them on. Sometimes when I log onto my computer and it makes that little noise it happens. But I havent been able to find anything about triggers involving sound.
 
Nakamova said:
I'm not prepared to deal with the worst-case scenario (i.e. seriously injuring someone else if I were to seize while driving). Something to consider.
Click to expand...

The worst case scenarios can and do happen. Think about it, Ky. Is it worth risking your life and others in order to drive? My seizures started out of the blue, too, no idea why.

Here's an article from today's Denver Post:

Monica Chavez charged in Thornton SUV crash that killed Stollsteimer family

The woman whose SUV went flying in Thornton three months ago and crushed a small pickup, killing an entire family, was arrested Friday evening on homicide charges.

Adams County District Attorney Don Quick announced Monica Chavez is being charged with five counts of criminally negligent homicide in connection with the deaths of the Stollsteimer family.

Each count potentially carries a one- to three-year prison sentence.

The charges were filed Thursday, according to court records, and Chavez turned herself in to police on Friday, later posting a $5,000 bond.

Police said Chavez's southbound Ford Expedition reached speeds of up to 100 mph on Grant Street during the evening rush hour Feb. 17.

At the intersection at East 84th Avenue, her SUV clipped the rear of another
vehicle and launched off a median. It landed on a Chevrolet pickup carrying the Stollsteimer family and then slid into the Urban Mattress store at 450 E. 84th Ave.

The accident instantly killed Randy Stollsteimer, 34; his wife, Crystaldawn, 31; and their three sons: Sebastian, 12; Darrian, 9; and Cyrus, 6.

Chavez and her two children, ages 5 and 10, who were in the vehicle with her, were treated at the hospital and released.

Official toxicology tests determined Chavez had neither drugs nor alcohol in her system at the time of the crash.

But for months investigators have been looking into Chavez's medical records and checking the mechanics of her vehicle.

Investigators have turned the case over to the district attorney's office, and details about what they found are not being released.

Speaking through a spokesman, Chavez has said that she believes she suffered some type of seizure at the time of the incident and that she doesn't remember what happened.

"They maintain their innocence," said Mark Lopez, pastor of Westside Christian Fellowship in Denver, who is speaking for the Chavez family.

"They were not aware of any diagnosis prior to this that would tell her she was susceptible to any kind of seizures, though she is on medication now," Lopez said Friday night.

He was unsure what kind of medication Chavez is now taking but said it is for seizures.

Hank Stollsteimer, Randy Stollsteimer's uncle, said Friday night that the family has put its trust in the investigators while waiting for them to piece together the events and determine what justice is required.

"It's a little bit of a comfort that something is being put together about what happened," he said.

"Nothing's going to make it better, but this is what we've been patiently waiting for. We just wanted to get the facts straight."

The charges Chavez faces are less-severe Class 5 felonies, compared with vehicular homicide charges, which are Class 3 felonies.

Krista Flannigan, spokeswoman for the district attorney, said she could not comment specifically on the case but said the difference between the charges lies in negligent behavior as opposed to the reckless behavior required to charge someone with vehicular homicide.

Lopez said Chavez and her husband will fight "tooth and nail" to keep their family together.
Click to expand...
 
Hi Kylie!

What you've been talking about, losing vision, losing hearing, not being able to talk and hearing voices or songs--all of that happens to me before a seizure. I have that, then everything goes black and I end up on the floor. People who witness it say I twitch or shake a little, but I remember nothing.

I'm a 27 year old female. My seizures started when I was 23. Mine started at the same time I was diagnosed with PolyCysticOvarianSyndrome or PCOS so we are fairly certain my very imbalanced hormones are casuing the seizures. Have you had your hormones looked at? My regular doctor did a blood test on me, didn't even have to see a specialist. I did have to see an OBGYN to confirm the cysts, but a hormone panel through simple blood work may be a good place to start.

Please be cautious. For about 2 years, my seizures were ONLY absence seizures, with what you described. I have just started the losing consciousness and such.

Kylie, I drove from the time I was 17, until this year. At this time, I can no longer drive due to how bad my seizures have become. I have to get rides from people to get to work, and it's frustrating, but I couldn't live with myself if I passed out and hurt someone else.

Have you talked to mom about how much you dislike the current doctor? A lot of your stress may just be from that, and there are plenty of bad doctors, it doesn't make you a bad patient for wanting to see someone else.
 
I know it's hard not to beable to drive. Probably even harder because you are seeing all of the people in school with you getting their license and knowing you won't going to beable to. When I first found out that I had epilepsy and wasn't able to drive I didn't know what I was going to do. Luckily I have family and friends who help me get palces I need when ever I need to get there.

Don't take this the wrong way but I see driving with epilepsy is sort of like driving drunk. You may think your ok to drive but who knows, you could end up passing out (if you're durnk) or go into a seizure, and have no idea what you are doing. You could end up seirously hurting yourself or killing someone.

I don't know when I'm going to have a seizure, and I usually don't know I've had one unless there is someone there to tell me that I've had it. Usually I'll just stare off into space and I'm totally unaware of anything that's going on around me. If you have seizures like these then it's very dangerous to drive. Other times I'll have one (I usually still black out) and when I come to I'll see that I've moved things around the house or things like that. I even put the dishes in the dishwasher once while having one. I didn't know I had the seizure until the next day and was putting more dishes into the dishwasher and saw that things were put in it in all crazy ways.

When I first started seeing my neuro I would see his physicans assistant every other visit. I hated her. She kept telling me that I was having seizures because I wasn't taking my meds and for all sorts of other reasons. None of the reasons were true.

Everyone knows I take my meds and I take them on time and that if the neuro tells me not to do it I don't. Finally I got so sick of her telling me things I ended up telling her off in the office.

One time when I needed to make an appoint with my neuro out of my ordinary schedule because of things that were happening his secratery told me that I wasn't going to beable to get in to see him for a week but I could get in to see his physicians asst the next day. I told the secratery that I'd rather see her (the secratery) than his assistant and made the appt for the next week.

If you don't feel comfortable with the dr you are seeing then change drs. I've done this before with other types of drs and found that things work better with them.
 
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