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

@pamelastewart5
Hello again,
You have probably read the thread about epidiolex but in case you haven’t @mmas is giving it to his 6 year old daughter. It hasn’t been helpful the last time I heard from him but now she should be on the maximum dose. Hope he updates us soon. I thought I read Epidiolex was about 25% effective but I can’t remember if that was for Tonic Clonic Seizures or it’s overall effectiveness. I’ll try and get some accurate info about that. Does anyone know? Atonic or Drop seizures associated with Lennox–Gastaut syndrome appear to be nearly 42% effective provided its used as an add on medication in adults.
Not quite the wonder drug they had thought it would be.
Best wishes,
Jake

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We haven't started Epidiolex yet because yet another form needs to be filled out by the neurologist. Once we do start, I will report on my son's progress. He had atonic seizures as a toddler, but now he only has grand mal seizures when he sleeps. We are grateful for that–many fewer injuries! He has tried many different med without success, so we aren't expecting a miracle. But. . .hope dies hard! And we are hoping for the best.
Thanks for your info, Jake. You know a lot!

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@pamelastewart5

We haven't started Epidiolex yet because yet another form needs to be filled out by the neurologist. Once we do start, I will report on my son's progress. He had atonic seizures as a toddler, but now he only has grand mal seizures when he sleeps. We are grateful for that–many fewer injuries! He has tried many different med without success, so we aren't expecting a miracle. But. . .hope dies hard! And we are hoping for the best.
Thanks for your info, Jake. You know a lot!

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@pamelastewart5
Hello,
I’m sorry your son is having Nocturnal Tonic Clonic Seizures. Does you son have an anti-suffocation pillow? Thank you for keeping us informed. I’m curious how well this medication works with Lennox-Gastaut syndrome. There was a lot of hype that Epidiolex was going to be the next Epilepsy wonder drug, unfortunately it hasn’t been as effective as thought. Fingers crossed it will work for him.
Blessings,
Jake

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I began having seizures after back surgery over two years ago. My neurologist has me on medication, but has no clue as to the cause of the seizures.
The Mayo website is the first source of information that has mentioned epilepsy.

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@bruceg

I began having seizures after back surgery over two years ago. My neurologist has me on medication, but has no clue as to the cause of the seizures.
The Mayo website is the first source of information that has mentioned epilepsy.

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Hi, @bruceg – welcome to Mayo Clinic Connect. Thanks for sharing your story with seizures cropping up after back surgery.

Just wanted to inquire what the doctor has indicated about any connection with the surgery, or whether it's been deemed unrelated, or just unknown at this point?

Is the medication you are taking controlling seizures effectively?

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@bruceg

I began having seizures after back surgery over two years ago. My neurologist has me on medication, but has no clue as to the cause of the seizures.
The Mayo website is the first source of information that has mentioned epilepsy.

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@bruceg
Good morning,
I’m sorry to hear of your seizure disorder. At least half of Epilepsies are Idiopathic (Unknown cause) and the actual cause unfortunately is seldom identified.
Did you have any seizures during surgery? If not, how long after it did they start? What type seizures are you experiencing and how often? What med/s are you on? Are your seizures controlled with the meds/s?
If the seizures started after the surgery, I wonder if it was coincidental or may be somehow related to the Anesthesia? I know some Anesthetics are prone to cause seizures
I’ve had Generalized Idiopathic Epilepsy for 52 years and it wasn’t controlled until 6 years ago.
Here are some Epilepsy sites, one informational and the others are forums.
I wish you luck in your journey,

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

Epilepsy Foundation
https://www.epilepsy.com/forum-topics

Epilepsy Action Forum 4e (UK)
https://forum.epilepsy.org.uk/

Epilepsy Society (UK) Informative site
They discontinued their forum.
https://www.epilepsysociety.org.uk/facts-and-statistics#.XObS9BZlDDs

Jake

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@jakedduck1

@bruceg
Good morning,
I’m sorry to hear of your seizure disorder. At least half of Epilepsies are Idiopathic (Unknown cause) and the actual cause unfortunately is seldom identified.
Did you have any seizures during surgery? If not, how long after it did they start? What type seizures are you experiencing and how often? What med/s are you on? Are your seizures controlled with the meds/s?
If the seizures started after the surgery, I wonder if it was coincidental or may be somehow related to the Anesthesia? I know some Anesthetics are prone to cause seizures
I’ve had Generalized Idiopathic Epilepsy for 52 years and it wasn’t controlled until 6 years ago.
Here are some Epilepsy sites, one informational and the others are forums.
I wish you luck in your journey,

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

Epilepsy Foundation
https://www.epilepsy.com/forum-topics

Epilepsy Action Forum 4e (UK)
https://forum.epilepsy.org.uk/

Epilepsy Society (UK) Informative site
They discontinued their forum.
https://www.epilepsysociety.org.uk/facts-and-statistics#.XObS9BZlDDs

Jake

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My seizures are now mostly under control. My neurologist has me on lamotrigine. I have had one seizure in the last 90 days and that was probably because I thought it would be OK to have two glasses of wine. Now I can't drive for another 90 days.

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@bruceg

My seizures are now mostly under control. My neurologist has me on lamotrigine. I have had one seizure in the last 90 days and that was probably because I thought it would be OK to have two glasses of wine. Now I can't drive for another 90 days.

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@bruceg
Good morning Bruce,
I’ve always been told by Neurologists not to drink but my E was severe and I took 5 different AED's.
A drink or two doesn’t usually lower a persons seizure threshold. Binge drinking is the worst culprit. Alcohol withdrawal is usually what causes seizures. That’s not to say the wine couldn’t have done it. Tolerance is very individualized.
In case you’re not aware your lamotrigine should always be from the same manufacturer also
people shouldn’t switch from brand to generic and vs versa. This is primarily due to the inert ingredients affecting the bioavailability of the medication. In years past the main drug ingredient could vary by a certain percentage.
Although some studies claim there’s no difference I disagree based on experiences of people I’ve known and read about. Also when I was admitted to the hospital nearly unconscious I was given generic medication and by the time I knew what was happening my seizure medication level dropped by 52%. Although I didn’t have a seizure I don’t believe it’s reasonable to assume no one else could have under the same circumstances. I prefer to err on the side of caution.
Take care,
Jake

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@jakedduck1

@bruceg
Good morning Bruce,
I’ve always been told by Neurologists not to drink but my E was severe and I took 5 different AED's.
A drink or two doesn’t usually lower a persons seizure threshold. Binge drinking is the worst culprit. Alcohol withdrawal is usually what causes seizures. That’s not to say the wine couldn’t have done it. Tolerance is very individualized.
In case you’re not aware your lamotrigine should always be from the same manufacturer also
people shouldn’t switch from brand to generic and vs versa. This is primarily due to the inert ingredients affecting the bioavailability of the medication. In years past the main drug ingredient could vary by a certain percentage.
Although some studies claim there’s no difference I disagree based on experiences of people I’ve known and read about. Also when I was admitted to the hospital nearly unconscious I was given generic medication and by the time I knew what was happening my seizure medication level dropped by 52%. Although I didn’t have a seizure I don’t believe it’s reasonable to assume no one else could have under the same circumstances. I prefer to err on the side of caution.
Take care,
Jake

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Thank you, Leonard
I will make sure that the medication is from the same supplier.
Is it common to have memory loss (both long term and long term) as a result of the seizures?
Bruce

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@bruceg

Thank you, Leonard
I will make sure that the medication is from the same supplier.
Is it common to have memory loss (both long term and long term) as a result of the seizures?
Bruce

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Hello Bruce,

I've been epileptic approximately 40 years. The last 10 have been Limictal. Yes, brand and generic are important. I am in a 5% group that cannot use generic Limictal, and found out the hard way. Your neurologist is aware of the problems with this and should write you a prescription that states, brand only, or specify other. It's probably a good guess that many, brand or not issues, go unnoticed or get lost in several other attempts to control other multi-behaviors in a patient.

Memory loss,,, yes,,, long and short. For all, long may be accessible one minute but not the next. I can say, the longer I can go without any type of seizure, the more short term are accessible. Leonard can comment/direct on the next (because there is plenty of info out there) but my understanding is that all incoming information in is remembered, just like anyone, just not accessible to the epileptic "at all times". Some however will truly never be recalled. Think of memory as dime size windows pasted to the surface of a basket ball. Some are intermittently opened or closed, during your attempt at recall. For most folks, the more opened, better recall. For us, there aren't enough opened often enough.

Occasionally misc prompts will trigger a memory I thought wasn't avail for recall. That was a visit of the neighborhood I grew up in from 50 yrs years ago. Interesting/enjoying but how much is it really worth in all days? It's relaxing in that I had some memory back for a few min. I also have learned somewhat,,, how to avoid having to forget in front of others. In a conversation you have to remain quiet for a bit waiting for prompts. Talk to an interrogations officer about this some time. Another view of recall is, it makes others happy that you thought enough of them to remember events with them. Not remembering is also interpreted as not caring enough to remember. All you can do is explain. And go ahead and recall when it's not prompted, like, "hey Tom, remember when we were at Joe's last month,,, that dog that chased the cat?"

Short term… I overload myself with daily information a bit (more on that abuse and side affects another time) and the only way I can combat it is a day-planner. Keep it within 20 seconds of wherever you are. It will help with many things over time, and it will show some people that you care enough to have written them down in your history. The rest of the time it provides less stress, like your grocery list at the store. Keep a month or 2 of planner history in another folder for long term recall. I have about 25 years of planners in my file. It's great fun to read occasionally, for confidence, maybe even recall practice.

Rick

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@bruceg

Thank you, Leonard
I will make sure that the medication is from the same supplier.
Is it common to have memory loss (both long term and long term) as a result of the seizures?
Bruce

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@bruceg
Memory problems are extremely common with Epilepsy, more often because of the medications.
Overall the brain is quite resilient. Although memory issues are not limited to only severe or frequent seizures memory damage is possible with any seizure.
My memory is horrible so I can relate. I have total amnesia of my first 15 years because of Convulsive Status Epilepticus (continuous state of seizure) and being in a coma for months.

Here is a bit of info on memory from the Epilepsy Foundation.
https://www.epilepsy.com/learn/challenges-epilepsy/thinking-and-memory/types-memory-problems.

Here’s something from Epilepsy Society in memory.
It explains a little about the temporal lobes.
https://www.epilepsysociety.org.uk/how-epilepsy-can-affect-memory#.XOg3KRZlDDs

What type seizures do you have Bruce, Tonic-Clonic, Focal or something else.
Jake

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@jakedduck1

@bruceg
Memory problems are extremely common with Epilepsy, more often because of the medications.
Overall the brain is quite resilient. Although memory issues are not limited to only severe or frequent seizures memory damage is possible with any seizure.
My memory is horrible so I can relate. I have total amnesia of my first 15 years because of Convulsive Status Epilepticus (continuous state of seizure) and being in a coma for months.

Here is a bit of info on memory from the Epilepsy Foundation.
https://www.epilepsy.com/learn/challenges-epilepsy/thinking-and-memory/types-memory-problems.

Here’s something from Epilepsy Society in memory.
It explains a little about the temporal lobes.
https://www.epilepsysociety.org.uk/how-epilepsy-can-affect-memory#.XOg3KRZlDDs

What type seizures do you have Bruce, Tonic-Clonic, Focal or something else.
Jake

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My seizures seem to be simple focal seizures and occasional petite mal.
This is from internet diagnosis, so might not be medically accurate.
I am new to this and searching for information.
My main current concern is memory loss.

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@bruceg

My seizures seem to be simple focal seizures and occasional petite mal.
This is from internet diagnosis, so might not be medically accurate.
I am new to this and searching for information.
My main current concern is memory loss.

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@bruceg
Hi Bruce,
First, it’s not wise to try and diagnose yourself. Seizures can mimic other conditions/illnesses.
Have you had an EEG, MRI or CT?
Since your taking lamontrigine you must have been diagnosed by a physician. Did they give you a specific diagnosis?Have you see a Neurologist?
Your obviously unaware of your Absences but when your Focals START do you experience any sensations like headache, tingling, light-headedness, numbness, or odd tastes like metallic, sweet, bitter, salty, or have visual symptoms like seeing colors, shapes, flashing lights or hear any sounds?
An Aura is a precursor or warning to a seizure which can be any of the above and more, do you experience any before a Focal Aware Seizure (Petit Mal, old terminology) Some believe Auras are separate, however others, myself included believe an Aura is in fact a Focal Aware Seizure.
I relate to your memory issues but it’s to be expected with Epilepsy and Anticonvulsants. Some doctors may say seizure meds have nothing to do with memory loss, don’t buy it. You may want to talk to your doctor and see if there is a better medication option for you.

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I have a neurologist. He prescribed Limotrigine.
He is very responsive to my questions. My wife and I are working on a list of questions to e-mail him this evening. Among them is if my idea of the name of the seizures is accurate, what supplements might help, and his thoughts on memory loss caused by Lamotrigine.
I would appreciate ideas for additional questions for him.
Thank you,
Bruce

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@bruceg

I have a neurologist. He prescribed Limotrigine.
He is very responsive to my questions. My wife and I are working on a list of questions to e-mail him this evening. Among them is if my idea of the name of the seizures is accurate, what supplements might help, and his thoughts on memory loss caused by Lamotrigine.
I would appreciate ideas for additional questions for him.
Thank you,
Bruce

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@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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Hi, all – a number of you have shared your (or a loved one's) epilepsy story, and just wanted to touch base and see how things are going for you. I'm sure others in this Living with Epilepsy discussion will also benefit from hearing an update.

@pamelastewart5 – has your son now started on his cannabidiol (Epidiolex)? If so, how is that going?

@djsmom – how are things going with your daughter and the levetiracetam (Keppra)? How are you doing?

@patrassi – how are things going for your son? How is the levetiracetam (Keppra) working for him?

@kimberly1967 – how is your daughter? Is she still unable to work?

@mmaryemc, thinking of you and your granddaughter.

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