Living with epilepsy - Introduce yourself & meet others

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.

@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.

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

@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

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.

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

@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

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

@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

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.