Breakthrough seizures after 16 yrs

Posted by lynette1975 @lynette1975, Nov 22, 2019

I had a breakthrough grand mal seizure on the 11th after being free of grand mals for 16 yrs. I've had absence seizures over the past 16 yrs every once in a while, maybe 1 per month at the most. After the grand mal on the 11th, I have been having 20 or more absence seizures everyday! I am so scared! Afraid that I will have another grand mal. I can't get to a neurologist until the end of December. They increased my dose but it hasn't helped the absence seizures. They gave me lorazepam to take if the absence seizure is too bad. I'm home alone all day and I'm so scared that something will happen to me while they're gone. Sorry for the long post, I just don't know who to talk to. My family doesn't really take it as seriously as they should. Thanks for listening 💜

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.

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@gimmegum

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.

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Thank you 💜

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I have a question

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In reply to @1964chevyz "I have a question" + (show)
@1964chevyz

I have a question

Jump to this post

What is your question?

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@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?

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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?

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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.

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@hopeful33250

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?

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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!

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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 💜

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@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?

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@lynette1975
I certainly can understand your reluctance to have surgery. Sometimes it’s very successful occasionally not at all or seizures may increase, decrease change in severity or the type of seizure my change. Doctors suggested I have surgery numerous times but I always refused because my seizures were intractable, frequent and severe and my chances for becoming seizure free were about 50/50 at best, not worth the risks in my opinion or my parents. One thing in your favor is that TLE is a common Epilepsy surgery. Although i’m not sure if your seizures are intractable or how long you’ve had seizures but if it were me and my seizures were on controllable with medication and I had a history of meningitis I’d be very leery of becoming seizure free.
I’d be sure to ask your doctor a lot of questions about the function of the temporal lobe and specifically about the hippocampus if they’re planning on resecting that as well. There have been some studies that suggest if a patient is taking two medications and a third or more is added there’s only a 5% chance that that additional drugs will be effective. Epilepsy is an extremely individualized condition and I am very confident the researchers didn’t try every imaginable combination and dosage of every medication available or on every type epilepsy, so I don’t know how they came up with that conclusion but I definitely don’t agree.
You’ve got a lot to think about and I wishing you all the best,
Jake

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@lynette1975

I have had both petite mal (complex partial absent) and grand mal (tonic clonic) seizures for 58 years. I had a grand mal when I was 16 and the next was when I was 54. Like you a long time between seizures. I have had less than 10 total grand mal. However, I live with petite mal absent seizures or "twitches" is what I call them. They last about as long as it takes to flip a light switch from on to off and back again. It is hard to say how many of those I average a day, maybe 5.

I have just joined this site and became aware of epilepsy specialists and epilepsy centers. I have a level 4 center within a couple of hours of me. I have been on medicine of one kind or another from age 7. Generally not combinations though. I too have the lorazepam in case the petite mals lead to something bigger. All of it seems to work for awhile (stops the petite mal) and then I start having them again. A term I have heard here is medicine resistant epilepsy.

I am thinking about calling the center and asking for an appointment. I am curious if the medication is doing me any good at all. Thanks for your post.

Liked by lynette1975

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Most of the 10 grand mal (tonic clonic, I wish they would quit changing the names) I have had were breakthrough seizures due to change in medicines.

The one at age 54 was due to being put on a large dose of steroids for too long, an oops due to miscommunication between my hematologist and primary care. Both excellent doctors but an example of not enough communication and something I could have fixed by asking are you sure more than I did.

I had several emergency room visits as I was taken off of Keppra. I was coming down at prescribed levels but it wasn't slow enough for me. I was cutting 500 milligrams tablets down to 62.5 milligrams before I made it off. My provider said I would be taking dust before I got off of it. This a good example of how everyone is different. The lorazepam tablets did not stop the seizures although it did keep me from going into a full blown, lights out seizure. The emergency room injected me with the stuff (probably a higher dose) and I came out of it.

I had one and the start of another due to low sugar levels. A new trigger for me. New is within the last 10 years. About the time the steroids were introduced.

I am curious if you had the surgery as I may be headed down the same path myself. Thanks.

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