New Here: Losing My Mind

[tsspinklady]

Today has been a tough day for me, and I'm so thankful that there is a forum/outlet like this because I feel so alone and depressed today. Is it just me, or has anyone else totally lost their memory after having seizures? I'm not sure if this is from the Keppra or the seizures. I had three last week - one per day in my sleep between 5 and 6 a.m. I don't remember anything about last week at all -- I hardly remember last month. I don't feel like myself - sort of out of body feelings -- and I don't have any answers at all - why did I suddenly start having seizures again? I've been trying to make lists today of stuff I need to do/remember, but that's hard to do when you can't remember what you need to remember! What if I was trying to save the world, but I just don't remember my charge? I've looked at notes that I wrote to myself and they mean nothing to me at all. Some of my friends' voices don't even sound familiar.

[hawke86]

pinklady,
what you're feeling is normal.

[Bernard]

Hi tsspinklady, welcome to the forum.

... Is it just me, or has anyone else totally lost their memory after having seizures?

It's happened to my wife a few times - mostly after heavy seizure activity (status epilepticus or a cluster of tonic clonic seizures in a week).

I'm not sure if this is from the Keppra or the seizures.

Keppra can cause exaggerated mood swings. Vitamin B6 supplements are said to help curb that.

For what it's worth, my wife's memory recall and cognitive functions pretty much returned to normal in time when she got the seizure activity back under control.

[tinasmom]

Pinklady -

Glad you are here. So sorry to hear that you are going through such a tough time right now. Have you talked to your neurologist about this? I personally don't have seizures, but I have been linked to Epilepsy through my daughter and granddaughter for 20 years now. I sure hope that you are feeling better soon.

[tsspinklady]

I dont really have a neurologist yet, per se, except the one that saw me in thie hospital. i've got an appointment with him next week, but I heard that his group doesn't take my insurance...so i might be back to square one.

Thank you to everyone who posted and welcomed me into the group. It's nice to have something like this to turn to.

[BuckeyeFan]

Welcome to CWE. I have more trouble with what I call 'quick recall' memory. Like someone walking in who I have known for years, but I can't pull up their name. This has even happened with family members. The day I couldn't come up with my Grandson's name about drove me nuts.

I have never remembered anything during major seizures (well controlled now), but I usually recall the events leading up to it.

((((HUGS)))))

Please stop in often.

[skillefer]

Hi Pink! Welcome to CWE. Actually, lousy memory seems to be par for the course around here. My memory is lousy when I have seizures. And my hubby has quit asking if I remember meeting people. Most of the time I don't. The thing is, you need to find a neurologist . My neurologist didn't take my insurance, but because I was his patient, he agreed to take it. So I'd say talk to your neurologist. And if he won't take it, then find another neurologist that will.

[RobinN]

I wish you luck finding a good neurologist to help you through the learning phase of this disorder. It isn't always easy, so I hope you find CWE a place you can come to lean on occasionally.

Welcome.

[tsspinklady]

I stopped by the neurologists' office this morning and had a tearful moment in the lobby, while the office people just sat there behind their glass walls (there has GOT to be some sort of symbolism in that). They actually told me that in a month, they would be taking my insurance, so looks like things are on track in at least one way. I'll take it as good news, that is for sure.

I feel like I have a team through the CWE forum though, so I'm not as scared. Well, actually, that's a lie -- i'm in a panic because I don't feel like me and I can't remember who "me" was or is....

I just don't trust myself anymore - I was in the bathroom this morning and there was a pair of sizzors laying on the counter, and it was all I could do to NOT grab them and cut all my hair off my head for no reason save that it seemed like the appropriate thing to do with a pair of sizzors in the bathroom. Does that make any sense?

Also, words don't look the same -- i mean, I already have a problem with spelling confidence...but now, no words look right at all!

[skillefer]

Are you taking vitamin B-6? It's recommended for people taking Keppra. It helps to bring the moods into an even keel. At least that's what several people here have found. I'd let your doc. know about the impulse you had to cut your hair this morning. Ok?

[tinasmom]

I just remembered that when my daughter was on Keppra, she had some back reactions. She picked up one of our puppies and threw it across the room and she didn't remember doing it. They had to take her off the Keppra because of so many bad reactions.

[tsspinklady]

I've not started taking B-6, but I'll make a note of this for my doctor and will ask him. I really don't remember meeting my doctor, since I've only seen him in the hospital, and I don't much remember that. I'm trying to write everything down so I'll have a record of what's going through my mind.... thanks for the suggestions

[hawke86]

I lost my mind years ago, if I had one.:bigs mile:

[nana1]

Don`t worry to much. I seem to have forgotten alot of things around the times i am coming out of seizures. i can be that way for months. My spelling can be really bad ( as you can tell). I am on keppra1000 twicw a day, lamictal 2000mg twice a day, zonegran100mg twice a day, every day.
I do have a note book by my bed in my living room and in my bathroom, that way i can write down what happens . When i am out walking i carry a small notbook with me in my purse in case i need it. I have been threw 6 neurologist, i am with a good one he is someone who takes time to listen to you and talks to you and expains thins to you, i feel comfortably with him. You got to feel comfortable and you got to trust the person. Call your insurace and see if they can send you a list of neurologist you can see they cover, tell them were you live, this may help you.
By the way welcome to WCE!!!!!


nancy

[Necie]

Hello Pink Welcome.
I do know what you mean about everything...I have to write everything down. My kids know now if they tell me something(where they need to go,what activities they have, I have to write down what I need to do for the day laundry, dust ect.) I know that sounds stupid but we all have to do what we need to do. I cant spell worth a crap now either.My 13 year old son thinks it funny when I cant spell the smallest word right. But he makes me laugh about it which helps
I have found out that with ep and seizures things do change like talking spelling, remembering. You just need to find what works for you.
Good luck. Necie

[stilldancing_98]

Welcome ! you will make it! I do that just with little seizures! If there is somebody like a friend a parent who knows what is going on in your life this is good. Sometimes I have what I call flash siezures and they just take my memory is a second. The whole week like you are talking about. Mine is a myoclonic siezure. I call my Mom. And she fills me in and then I start remembering.Talking about it can help.It can bring the week back. Im glad you are here,Teresa