Breakthrough seizures after 16 yrs

Hey.
I know the feeling. It's scary as heck, not knowing when the next "Big One" will hit you.
Or, if you'll survive/ever be the same. HUGS.
It may seem so, but You aren't alone.

Thank you 💜

I have a question

What is your question?

@lynette1975 - welcome to Mayo Clinic Connect and the Epilepsy & Seizure Disorders group. I can imagine it would be surprising to have a grand mal seizure after being free of them for 16 years.

@gimmegum - welcome to you, as well. It sounds as though you have some background with seizures. Do you have epilepsy or a seizure disorder? If so, what do you do to manage the scary feeling of not knowing when the next "big one" will hit or if you will ever be the same?

I wanted to be sure you both met other members here like @hopeful33250 @crstyday40 @jakedduck1 @dawn_giacabazi @chynex @debirwin. Hoping they can provide support as well as share some of their or their loved one's experiences. Guessing that some of them have experienced some fear of a significant seizure, as well.

Were you okay being home alone all day over the weekend, @lynette1975? Did you continue to have multiple absence seizures daily?

Hello @lynette1975

I agree with @lisalucier that it must have been surprising and frightening to have a grand mal seizure after so many years. Have you been taking meds for seizures during the past 16 years?

I can also understand your concern if you cannot see your neurologist until the end of December. Did you explain to them about the grand mal seizure?

I would urge you to find some support for your seizures. Here is a website for the Epilepsy Foundation, https://www.epilepsy.com/connect. if you click on the link, you might find some helpful information.

Would you post again and let me know how you are doing?

So sorry, and hate you have to be alone. It does seem like Dr.'s Are overloaded and don't really know or have answers to many of our seizures and concerns. Hang in there and know you are not alone in wanting answers and quick fixes.

Hi, thank you for responding and yes I was taking 200mg lamictal twice a day during the entire 16 yrs. This was a complete shock. I am currently taking lorazepam because I have so many petit mals if I don't and they scare the heck out of me since I'm scared they will lead to a grand mal. Even though they increased my lamictal it hasn't helped. I still have not seen a neurologist. They want me to see an epileptologist. It looks like I won't be seen until February now 😞 I will keep everyone updated. Thanks again!

Update 4/9/2020 any advice/comfort is appreciated:
I went to the epileptologist on Feb 28th. He suspects that I have TLE or MTLE (basically scar tissue as a result of my past encephalitis). To my understanding they are similar but MTLE is more bedded in the brain. He said since I've tried more than 3 meds that I should consider surgery to remove the scar tissue as long as it is safe to do so. I am scheduled for a MRI, an fMRI, 7 day VEEG, and neuropsychological exam. He said this will pinpoint where the scar tissue is and whether or not they will be able to remove it safely. I am SCARED! I hate having seizures and try to avoid them. I have extreme anxiety about it. I'm anxious about the MRI'S as well. I hate them. I know I need this done and it may lessen or possibly get rid of my seizures or it may not work at all. Even though I'm taking lorazepam several times a day, I'm still having petit mals almost daily but I haven't had a grand mal since November. I am also having nocturnal seizures several times a week. The surgery part scares me to death! Has anyone been through this? What can I expect? I've read a lot of things but I'd like to hear from people that have experienced this. Thanks 💜

@lynette1975 It makes sense to connect with others who have been through the process of preparing for surgery for what your medical team feels like is scar tissue left behind from encephalitis.

I'd like to invite others who they themselves or who have had loved ones face possible brain surgery. Perhaps @sarahlou, @kerivb or @suellipo68 can offer some insight on what you might expect.

When is the appointment for your workup? Do you have a good support system (i.e. family and/or friends) who can be there for you during this stressful time?