Living with epilepsy - Introduce yourself & meet others

Welcome to the Epilepsy group on Mayo Clinic Connect.
Having seizures, or being told you have epilepsy, affects people in different ways. Let’s learn from each other and share stories about living well with epilepsy, coping with the bumps and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. You’re likely to also meet fellow member and volunteer patient Mentor, Dawn (@dawn_giacabazi), when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one. Grab a cup of tea, or beverage of you choice, and let’s chat. Why not start by introducing yourself?

@jakedduck1

@bruceg
If your EEG/s have been normal you might ask about a sleep deprived or Ambulatory EEG

If interested in diet treatment ask about
The ketogenic diet
The medium chain triglyceride diet (MCT)
The modified Atkins diet
The low glycemic index diet

Maybe ask if another medication would cause fewer memory issues

What type of Epilepsy do I have?

If interested in surgery you could ask about that.

Are there support organizations for epilepsy are in my area? Always helpful to hear from others.

VNS may be helpful provided you have
refractory absence epilepsy. I’m not sure of the severity of your E

Jake

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Has anyone on here had success in retrieving lost memories. Just wondered if there was any hope for this.
Bruce

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@bruceg

Has anyone on here had success in retrieving lost memories. Just wondered if there was any hope for this.
Bruce

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@bruceg
Hi Bruce,
I have never regained any lost memories but most of my issues were caused by being in induced comas for months at a time (Retrograde Amnesia)
I have posted your question on an Epilepsy forum. Hopefully someone will have good news.
Hope hangs eternal buddy, don’t give up.
Jake

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@jakedduck1

@bruceg
Hi Bruce,
I have never regained any lost memories but most of my issues were caused by being in induced comas for months at a time (Retrograde Amnesia)
I have posted your question on an Epilepsy forum. Hopefully someone will have good news.
Hope hangs eternal buddy, don’t give up.
Jake

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Thank you,
Jake
you are a great source of info. and inspiration

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@bruceg
Hi Bruce,
Here are a couple replies I got from the Coping with Epilepsy forum.

My short term memory went down hill really bad after I had brain surgery. My neurosurgeon told me that I had so many absence and complex partial seizures that it made my hippocampus shrink and become hard so they remove the right one.
I was told to do word search puzzles, math (which I don't like) and brain teasers to better my memory and I must say it has helped a lot. My Dr. also told me to stay away from cell phones because the frequency of the cell phone can cause short term memory if it's used to often. Go on line and type in "brain teasers" and give them a try some of them are so simple they are hard. I wish you the best of luck and May God Bless You!

Sue
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I don't think that memories will come back if you stop meds. I'm still taking meds but I've switched many through the years and it's never helped.

I don't have much left up there that happened before my first seizure when I was 27, 14 years ago. It seems like things I really liked I still remember.

My short term memory isn't that great either. I might forget things that happened a few months, weeks or even days ago. I hate it that I'll be talking with someone and I'll ask them a question I asked a few days ago and didn't remember asking it or what the answer is.

If I can relate words or names to something. I guy that I might start dating (cross my fingers) has a son named Trace, so I remember his name because you can trace something.

Crossword puzzles are great too. Many times the same question is asked in different puzzles so after a little while I remember the word. I do all sort of word puzzles that help with words and other other ones that have to make me think and have to remember something in it.

Hopefully more will reply,
Jake

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My name is Bruce. I am 73 years old and had my first seizure about 30 months ago. My seizures seem to.be under control with Lamotragine.
My short and long term memories are really bad.
As CEO of a small real estate development company, this is impossible to deal with so I.will be giving up a business I love.
My problems are small compared to others on this site. Every time I think of complaining, I think of them and and realize how fortunate I am.

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@bruceg

My name is Bruce. I am 73 years old and had my first seizure about 30 months ago. My seizures seem to.be under control with Lamotragine.
My short and long term memories are really bad.
As CEO of a small real estate development company, this is impossible to deal with so I.will be giving up a business I love.
My problems are small compared to others on this site. Every time I think of complaining, I think of them and and realize how fortunate I am.

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@bruceg
Hi Bruce,
I disagree that your problems are small. Memory loss always makes a huge impact in anyone’s life. Don’t devalue the seriousness of this problem. There will always be people worse off but your issues are still significant. If your willing to change medications there may be a better alternative for you. Dilantin/Phenytoin seems to cause fewer memory issues. You may want to ask your Neurologist.
Also a neuropsychologist may be able to help with memories as well as a speech pathologist.
Jake

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@bruceg
Hey there,
I was just curious about how your memory was prior to your Epilepsy diagnosis. Also what type of seizures did you have?
Jake

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@jakedduck1

@bruceg
Hey there,
I was just curious about how your memory was prior to your Epilepsy diagnosis. Also what type of seizures did you have?
Jake

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Thanks, Jake
I will try this with my Neurologist.

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@mmas

Yes, my daughter has been on epidiolex for about 4 months. Haven’t had too much success with it though. We may increase a little more. But…when she did go on it there was a program where we would only pay $25 until out of pocket deductible was met which we met pretty quickly because my daughter has lots of therapy. Maybe he will qualify for that? It was through insurance Caremark Cvs.

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Hi, @mmas – how are things with your daughter? Did you end up doing another increase with her cannabidiol (Epidiolex)?

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@lisalucier

Hi, @mmas – how are things with your daughter? Did you end up doing another increase with her cannabidiol (Epidiolex)?

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Yes, she is at max dose. Haven’t seen any improvements with the epidiolex. We increased her Trileptal and since we have done that she has been going 2-3 weeks with no seizures. We have neuro appt in July so will discuss possibly increasing epidiolex or getting her off. Some studies showed that we could increase more by based obviously on side effects etc. she is also on Vimpat which makes her crabby in the morning after she takes it which effects school and the desire to learn. Not too many options with that one since there are no extended release. She has been on vimpat and oxtellar (extended trileptal) for many years. If anyone has suggestions would love to hear them? Getting her on the extended release with the Trileptal was a big difference in mood. Thanks for reaching out!

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This week's member spotlight is for one of our most active members @jakedduck1. He's always willing to offer his support and share some laughs.

Transforming stigma to acceptance: Meet @jakedduck1
https://connect.mayoclinic.org/page/about-connect/newsfeed-post/transforming-stigma-to-acceptance-meet-jakedduck1/

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Hello, I am writing on behalf of my husband, who has had 6 seizures after a stroke at age 74. He is 77 now, and was doing pretty well, except for a seizure about every three months. The stroke was in his right hemisphere, temporal and parietal. He had an abnormality in that his language center is located on the right side, even though he is left handed. He almost fully recovered from the stroke, with aphasia being the most resistant to therapy. It is the seizures, and the medications for them, that are severely affecting his quality of life.

Does anyone have any experience to report on being on Keppra 2500mg./day, Lamotrigine 50 mg./day, and Vimpat 200 mg/day? He was on Keppra 3000 mg/day after the first thee seizures, and then after the fourth, the neurologist at a hospital in Boston added the Lamotrigine and the Vimpat. He was found to be at toxic level on the Keppra when they started to slowly reduce the dosage and he had the most recent seizure. His cogntition, mood, gait, balance and ability to function are now severely compromised. I know it is important to not have any more brain tissue damaged, but this state is not sustainable for him. I sent in a mesage via the hospital portal asking if they could at least do a level, or look at the combination. I know any reduction in dose is also a possible trigger for a breakthrough seizure. Any information would be appreciated. Thanks in advance!

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@dap

Hello, I am writing on behalf of my husband, who has had 6 seizures after a stroke at age 74. He is 77 now, and was doing pretty well, except for a seizure about every three months. The stroke was in his right hemisphere, temporal and parietal. He had an abnormality in that his language center is located on the right side, even though he is left handed. He almost fully recovered from the stroke, with aphasia being the most resistant to therapy. It is the seizures, and the medications for them, that are severely affecting his quality of life.

Does anyone have any experience to report on being on Keppra 2500mg./day, Lamotrigine 50 mg./day, and Vimpat 200 mg/day? He was on Keppra 3000 mg/day after the first thee seizures, and then after the fourth, the neurologist at a hospital in Boston added the Lamotrigine and the Vimpat. He was found to be at toxic level on the Keppra when they started to slowly reduce the dosage and he had the most recent seizure. His cogntition, mood, gait, balance and ability to function are now severely compromised. I know it is important to not have any more brain tissue damaged, but this state is not sustainable for him. I sent in a mesage via the hospital portal asking if they could at least do a level, or look at the combination. I know any reduction in dose is also a possible trigger for a breakthrough seizure. Any information would be appreciated. Thanks in advance!

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Hello, @dap – it sounds as though your husband had been through a lot. That's very difficult that seizures and the medications for them are compromising his quality of life now.

I'm hoping that Connect members like @crstyday40 @jakedduck1 @dawn_giacabazi @jenniferhunter and others may have some input related to the seizures and effects of the medications he's taken for control.

Have you heard back from the hospital? If so, how did they want to proceed?

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REPLY
@dap

Hello, I am writing on behalf of my husband, who has had 6 seizures after a stroke at age 74. He is 77 now, and was doing pretty well, except for a seizure about every three months. The stroke was in his right hemisphere, temporal and parietal. He had an abnormality in that his language center is located on the right side, even though he is left handed. He almost fully recovered from the stroke, with aphasia being the most resistant to therapy. It is the seizures, and the medications for them, that are severely affecting his quality of life.

Does anyone have any experience to report on being on Keppra 2500mg./day, Lamotrigine 50 mg./day, and Vimpat 200 mg/day? He was on Keppra 3000 mg/day after the first thee seizures, and then after the fourth, the neurologist at a hospital in Boston added the Lamotrigine and the Vimpat. He was found to be at toxic level on the Keppra when they started to slowly reduce the dosage and he had the most recent seizure. His cogntition, mood, gait, balance and ability to function are now severely compromised. I know it is important to not have any more brain tissue damaged, but this state is not sustainable for him. I sent in a mesage via the hospital portal asking if they could at least do a level, or look at the combination. I know any reduction in dose is also a possible trigger for a breakthrough seizure. Any information would be appreciated. Thanks in advance!

Jump to this post

@dap
You made a statement I’d like to briefly address.
“I know any reduction in dose is also a possible trigger for a breakthrough seizure.” Although I generally agree with your premise that statement is not always true. I’ve known some people who lowered their medication and either reduced and one mans seizures stopped.
Cognitive, mood, gait and balance problems are side effects of his medications. I have known countless people who discontinued Keppra due to mood issues, most often women. I’ve been on Anticonvulsants for 52 years, when I walk down the sidewalk I sway from the street to people’s lawns. I also fall occasionally. You mentioned he’s having “Ability to function” issues. Are you talking about his Functional abilities like activities of daily living? For instance,
Walking, Talking, Eating, Dressing, Bathing, Drinking or more cognitive problems like Memory, speech, vision, making decisions, solving problems. I assume he’s having Tonic Clonic Seizures. If not could you describe them.
Take care,
Jake

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@mmas

Yes, she is at max dose. Haven’t seen any improvements with the epidiolex. We increased her Trileptal and since we have done that she has been going 2-3 weeks with no seizures. We have neuro appt in July so will discuss possibly increasing epidiolex or getting her off. Some studies showed that we could increase more by based obviously on side effects etc. she is also on Vimpat which makes her crabby in the morning after she takes it which effects school and the desire to learn. Not too many options with that one since there are no extended release. She has been on vimpat and oxtellar (extended trileptal) for many years. If anyone has suggestions would love to hear them? Getting her on the extended release with the Trileptal was a big difference in mood. Thanks for reaching out!

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Hi, @mmas – wondering how your daughter is doing with her increased oxcarbazepine (Trileptal) recently? How did her summer neuro appointment go?

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