Living with epilepsy - Introduce yourself & meet others

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!

@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

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.

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?

@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

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.

@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

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

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

@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