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jillian18
@jillian18

Posts: 6
Joined: Nov 11, 2018

Nocturnal Seizures

Posted by @jillian18, Sun, Nov 11 2:06pm

I have had nocturnal seizures since I was 11. They would occur once to twice a year. As I have gotten older they would happen more often. In early thirties they were more often and would jolt me up out of my sleep before going into a grand mal seizure. Now at 36 they are waking me up nightly shaking but only occasionally turning into grand mal seizures. I had never experienced them awake until recently and I am seeking help locally. They started Keppra and I feel worse than before. Wondering if Mayo Clinic is my best option as opposed to UAB Hospital in Alabama.

REPLY

Hi @jillian18 and welcome to Connect. It must be frightening having these seizures progressively worsen.

I would like to introduce you some other Connect members, @dawn_giacabazi @jakedduck1 @lethargic as they have experience with seizures and can offer you support. In addition, @dawn_giacabazi is a patient of Mayo Clinic and is able to provide perspective of the care you would receive.

I also wanted to share this discussion on the use of Keppra: https://connect.mayoclinic.org/discussion/keppra/

I thought this discussion on Epilepsy Monitoring Units would be helpful as well: https://connect.mayoclinic.org/discussion/been-to-an-epilepsy-monitoring-unit-whats-it-like/

Back to you, @jillian18 have your doctors given you any reason as to why the seizures are increasing in frequency and severity?

Thanks Ethan!
Hi Jillian.
Ethan provided you with some great links. If you follow those a bit you’ll see I to have had seizures for years. I was seen by many doctors locally and tried many different treatments & medications. Went through numerous tests before I was seen at Mayos. My seizures are several types but after going through the treatment center discovered I had been experiencing seizures most of my life. I had been having partial complex temporal lobe seizures as far back as I can remember and would wake up with bedwetting which was a indication that I was having seizures in by sleep. My grand mal Seizures didn’t start until after a closed head injury sustained in a car accident. My last seizure was about 2003. I remember waking up with a horrific headache. I decided to lay down for a nap with my children which was out of character since I never nap. My husband reported he heard our children screaming & crying calling “mommy, mommy”. Says he walked in & found me on the floor shaking and making a weird noise. All I remember was waking up in an ambulance. Well I had second one at the hospital so they has given me 3 new medications and I had an allergic reaction and stopped breathing. My children were terrified. I never want my kids to find me like that again!!! I decided to go to Mayo Clinic. Now I’m Seizure free on 1 medication as a result of my testing & monitoring in the Epilepsy Clinic at Mayo Clinic Rochester. It was totally worth the trip.

May I ask what concerns or reservations do you have in regards to going to Mayo’s?

Thanks
Dawn

Hi, @jillian18 – I wanted to add my welcome to @ethanmcconkey's and @dawn_giacabazi's. I appreciate the input @dawn_giacabazi has provided, as someone who has experienced nocturnal seizures personally.

I'd also like to invite a few additional members into the conversation who have talked about nighttime seizures and may have some thoughts on these seizures waking you up nightly and where you might go for medical help, like @sarahlou @matermiracle @jakedduck1 @sall @macbeth.

@jillian18 – you mentioned starting levetiracetam (Keppra) and feeling worse than before. What symptoms are you experiencing since starting this medication?

@lisalucier

Hi, @jillian18 – I wanted to add my welcome to @ethanmcconkey's and @dawn_giacabazi's. I appreciate the input @dawn_giacabazi has provided, as someone who has experienced nocturnal seizures personally.

I'd also like to invite a few additional members into the conversation who have talked about nighttime seizures and may have some thoughts on these seizures waking you up nightly and where you might go for medical help, like @sarahlou @matermiracle @jakedduck1 @sall @macbeth.

@jillian18 – you mentioned starting levetiracetam (Keppra) and feeling worse than before. What symptoms are you experiencing since starting this medication?

Jump to this post

I started Keppra a little over a week ago and the seizures are different as I’m awake instead of being grand mal seizures. I am set to do a video EEG in January. I am heading to Dr today to go over what changes I have experienced this weekend. Keep seeing flashes and can’t focus. I feel like I try to look at something but my head is pulling the other direction if that makes sense. I have a 4 month old, 3 & 6 yr old so it’s not something I can live with and deal with until January.

@dawn_giacabazi

Thanks Ethan!
Hi Jillian.
Ethan provided you with some great links. If you follow those a bit you’ll see I to have had seizures for years. I was seen by many doctors locally and tried many different treatments & medications. Went through numerous tests before I was seen at Mayos. My seizures are several types but after going through the treatment center discovered I had been experiencing seizures most of my life. I had been having partial complex temporal lobe seizures as far back as I can remember and would wake up with bedwetting which was a indication that I was having seizures in by sleep. My grand mal Seizures didn’t start until after a closed head injury sustained in a car accident. My last seizure was about 2003. I remember waking up with a horrific headache. I decided to lay down for a nap with my children which was out of character since I never nap. My husband reported he heard our children screaming & crying calling “mommy, mommy”. Says he walked in & found me on the floor shaking and making a weird noise. All I remember was waking up in an ambulance. Well I had second one at the hospital so they has given me 3 new medications and I had an allergic reaction and stopped breathing. My children were terrified. I never want my kids to find me like that again!!! I decided to go to Mayo Clinic. Now I’m Seizure free on 1 medication as a result of my testing & monitoring in the Epilepsy Clinic at Mayo Clinic Rochester. It was totally worth the trip.

May I ask what concerns or reservations do you have in regards to going to Mayo’s?

Thanks
Dawn

Jump to this post

My main concern would be financially. I live in Alabama and have three small children.

@lisalucier

Hi, @jillian18 – I wanted to add my welcome to @ethanmcconkey's and @dawn_giacabazi's. I appreciate the input @dawn_giacabazi has provided, as someone who has experienced nocturnal seizures personally.

I'd also like to invite a few additional members into the conversation who have talked about nighttime seizures and may have some thoughts on these seizures waking you up nightly and where you might go for medical help, like @sarahlou @matermiracle @jakedduck1 @sall @macbeth.

@jillian18 – you mentioned starting levetiracetam (Keppra) and feeling worse than before. What symptoms are you experiencing since starting this medication?

Jump to this post

Constant flashes in my eyes and can’t focus on anything. Seizure patterns have changed also.

@jillian18
Hi there and welcome,
UAB and Mayo Clinic both have Level 4 Epilepsy Centers which are equipped with the best imaging technology, Epilepsy Monitoring units, Epileptologists and the most advanced Surgical Technology and Neurosurgeons. The Mayo Clinic has been rated the best Epilepsy Center in the U.S. I don’t know if Mayo would necessarily be “Better” although they might have a different perspective that may be beneficial.
As your no doubt aware different meds have various side effects, many if not most and sometimes all ease if not disappear within usually 3-6 months. If you continue with Keppra and are the Brand name no problem but if on generic make sure to tell the pharmacy you want it refilled from the same manufacturer as your original prescription. Pharmacies change drug manufacturers frequently.
You may find the following Epilepsy Forum links helpful.

https://www.coping-with-epilepsy.com/forums/

I lost this post twice and can’t remember a few things I wanted to tell you. I apologize for my stupidity.
I hope your seizures improve and your VEEG gives the doctors the answers they need to get you better control.
Jake

Thank you!

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