Good morning I’m Laurie

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I’m new to this. Just diagnosed two weeks ago. I’m on Keppra, 1500mg a day. I’m having all sorts of issues and emotions. I feel like everything is out of control which is not a place I like to be. My last seizure my poor daughter had to call 911 and do chest compressions on me. I’m terrified all the time. My seizures happen in my sleep, so I’m afraid to go to bed at night. This is so stupid for me because I’m the one in control, I’m the problem solver and yet I feel paralyzed. I’m hoping this is all the medication and maybe someone out there can relate. I guess I just need to learn to cope and I haven’t figured that out. So if someone has some advice, I could definitely use it. Thanks for letting me vent.
Hi Laurie it's nice to meet you!

Don't feel stupid! Just being diagnosed can be very scary and confusing. It's probably the same for your daughter and I'm glad she's there to help.

I have them when I'm awake and asleep. I usually don't know I've had one unless there is someone to see it happen or if I'd done something during the seizure. I woke up one morning and saw the lamp on my night stand had holes in the shade and it wasn't working very good. I think sometime during the night I must have had a seizure and punched it.

Trying to figure out what medicines and dosages that will work best may take some time. You might not know for a few weeks if the medicine is helping or not. If you are having side effects that you are having problems dealing with talk to your dr about it. Keppra can cause serious problems with your mood. One of them is being angry very easy, it's nicknamed Keprage. Vitamin B6 is something that helps with it so you might want to ask your dr about taking it.

Learning more about it can help. Ask away, we're here to help!
Hi Laurie,
I can relate to so much you’re saying. My kids have seen me in some unpleasant situations. It can be a roller coaster with medication. With some luck you’ll find something that works quickly.
There’s a lot of knowledge and kind people here. Feel free to rant and ask questions. ✌️
Hi Laurie, welcome! Make yourself at home.

Two weeks! yes indeedy, you're still in thick of “how, why, and WTF”. Everyone's journey with epilepsy is different, but I promise you that with time comes a better grasp of what's going on and a measure of peace.

When my seizures were new I hated being out of control and having to ask for help, but from those two things I learned not to worry what other people think, and to be more empathetic with those who are suffering in one way or another. I recently dropped a 5 lb. weight on my foot (not epilepsy-related, just klutzy) and now I know how exhausting lit can be to limp everywhere. For anyone else out there with a foot injury -- I feel your pain.

Anyway, Laurie please feel free to ask for support and information here! Come vent anytime.
hello, you are not alone, we are willing to listen. a lot of those had someone nice enough to do the same thing for us.
but do a search for keppra, most of us have some sort of horror story from it. it is not a friendly drug.
a lot of us night time twitchy people are always up and usually willing to talk. and the site is a library of information
Hi Laurie, welcome to the forum.

It can take a while for the body to adjust to a new epilepsy medication. When you start taking one - the side effects can be strong until your system adjusts (and then they are just moderate to mild - generally).

Good sleep is so important in maintaining brain function. In a sense, nocturnal seizures give you a double whammy. Have you ever had a sleep study done to see if you have sleep apnea? I wonder if low blood oxygen from apnea might contribute to nocturnal seizure activity.
Hello Laurie, welcome to the group. Finding the right epilepsy drug and/or dose can take a lot of trial and error. I get simple & complex partial seizures, & I've been on all of the ones used for those types of seizures. I will be seizure-free for a short time, but within a few months, the breakthroughs begin again. I'm currently taking 500MG Zonisamide & 200MG Xcopri per day, but I'm still having breakthrough complex partial seizures.
Sleep is important--and having a set sleep-wake schedule helps a lot. I've had the same schedule for YEARS. Unless something important is going on, I try to sleep by 10:30, & I'm up within 6 hours. Even if I have to stay up late, the amount of time I sleep isn't greater than 6 1/2 hours because I'm a deep sleeper.
Hi Laurie,

Welcome to the forum! Just like you I was having seizures in my sleep and my Dr. did a sleep study on me along with
a e.e.g. and found that I was having the seizures around 2 hrs. before I woke up the Dr. then put me on the drug Vimpat
and that stopped this type of seizure. I've also had absence and complex partial seizures for over 50 yrs. My best advice
to you is to keep track of your seizures as it has been mentioned get a calendar and write down what time you had the
seizure by doing that the Dr. may see a pattern in the seizures as to what time of day/night the seizures happen and
what days of the month. Often hormones changing can cause the seizures but everyone is different.

I found seeing an Epileptologist which is a Dr.that specializes in epilepsy was the best thing I ever did. The Dr. did a DNA
test on me to find the best seizure med for me with the least side effects. I also had surgery to reduce my seizures and
that was a big help but what has helped me more than anything is the medical marijuana and as crazy as it sounds taking
2 Tablespoons of apple cider vinegar with mother in it. I was using the vinegar to lose weight but then I notice my seizures
has also reduced according to my Dr. it's the mother which is a good bacteria and good protein that has helped me.
Everyone here is great and they have been very helpful to me even though I've had seizures for many yrs. I've learned a lot
from others.
I wish you the best of luck and May God Bless You,

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