Hi! I'm new here (found the site while looking for something else!!) and I've been going through the old postings, trying to find information about mood changes and memory problems. I have seen quite a bit about memory, but not much about mood. Several years ago I asked my neurologist if my anger could be related to my Dilantin or epilepsy and he said, "No." I left his office with some literature on epilepsy and guess what? The literature from his office said they can be related. I haven't gone back to a neuro since, just a GP. I figured there wasn't anything that could be done. I just don't think I'm myself.
A quick background: I've had seizures on and off since I was 2. I was taken off meds (dilantin & phenobarb) at 10, then at the age of 19 my seizures started again. This time are only at night (nocturnal), but they are really nasty. I'm now 43 and my seizures are under control. But I've occasionally missed work because I couldn't talk, because I bit my tongue so bad. But anyway, as long as I don't forget to take my 400mg dilantin, they are controlled. So I feel very fortunate that I can drive and appear to not have any outward problems with it. But inside I really think it's doing something to me.
I don't remember things, both long and short term. I mean I remember some, but my family and friends are surprised by how much I forget. Vacations, weddings, parties, lots of big events. And I seem to be mad so often!!! I'm actually pretty happy most of the time, but I get mad over the smallest things and get very worked up. Not violent, but definitely not nice!
Does this make sense to any of you? I just thought there might be some hope I hadn't heard of. My GP doesn't even discuss all of this with me. He doesn't seem to think there is any problem since my seizures are controlled. Most people don't believe anything is wrong with you if they can't see it!! And yes, I count my blessings that my case is so mild!! But I do feel as though my life span will be shorter due to the long term effects of this affliction or the meds.
I also have memory problems. Mostly short-term but lately long-term as well. I've also wondered about mood changes but after reading the info that comes with my meds I've put it down to the Tegretol. Sometimes I get really angry but I've never been violent. Lately though I've not had any problems with anger...just some depression and feeling sorry for myself.
i do not have epilepsy. i did, though, have a grand mal seizure over 22 years ago. it was the only time i have ever had a seizure. after my seizure, i could not remember a lot of what i did and where i was for the 2 years prior to my having the seizure. to this day, i still don't have some of the memories.
Hello. I am sorry you have had such memory problems. Up until recently, I was taking 600 mg a day of Dilantin. My short-term memory wasn't that great before starting my medication but now it's terrible. I lose my train of thought (it's more like a train wreck) and my friends have learned to let me take my time expressing myself. When you mentioned anger, I have had that problem too. It's more like I am really cranky. Especially when I have trouble doing things. Last night, I was really weak on my left side, and I couldn't even open a jar of spaghetti sauce. Normally, I am the one who opens those jars for other people. ... I think that with me, it's part frustration and part the Dilantin. (Now I have been cut down to 500 mg.) I, too, had seizures when I was quite young (status seizures that were prolonged causing damage) and then didn't have any until I was in my mid-teens. Now they are coming on strong (I will be 27 in June). I feel for you and hope that you get some relief soon. Are you taking any other medications not related to epilepsy?
P.S.: I went back to your post and remembered -- no pun intended -- that I really don't remember anything that happened in my life between about 4-5 years old and 10 years old. Maybe seizure-related?
All of us has an angel, if only we know where to look.
[This message has been edited by sekharp (edited 02-01-2003).]
All of us has an angel, if only we know where to look.
i am 45 years old. and when i was younger. in my late teens and early 20's i was so moody. i would get really mad for no reason. i have it under control now. (i better). i have been on dilantin for 25 years. seizure about 3,4x a year. i would forget event in the late teens and early 20's. we went to disneyland with my friends from new york and i couldn't remember that we had gone the day b4. but, oh well. my cup is still half full.
I've read that Dilantin was first used as a sleeping pill when it was introduced (30's or so) and that Tegretol was used as an anti-depressant (60's or so.) This makes me happy, as I hope my mood improves as I've just switched from Dilantin to Tegretol. People have been commenting how depressed and stressed out I seem.
Thanks to all of you for your replies so far. So many things to comment on!!
First, about the driving, as I understand it, as long as you are seizure-free, even if it's because of the meds, you are allowed to drive. If your seizures can't be controlled, even with meds, you can't drive. So I'm fortunate that mine are controlled by Dilantin.
No, I don't take any other meds. I should take more vitamins and get more calcium, though. I have the same gum problems others on here have mentioned. I don't even take birth control pills cause I thought my liver gets enough to deal with filtering out dilantin all the time!!
Yes, I have lots of depression, too. Not bad enough that people know. Not that I want sympathy, but when you are sad people aren't so mad at you. But if you express it by being mad, everybody gets mad at you. Does that make sense? I used to think all of that was me being a lousy person, but I've begun to think it could be the medicine.
I did try Tegretol about 20 years ago, I think. My memory is good enough to remember that I felt really spaced out. We didn't really try to work with it, just went right back to Dilantin. I wanted to have kids and the doctors then said Dilantin would probably be safer, because at least it had been around long enough for them to know the problems it could cause. The other meds were so new they didn't know what they might do to my babies. The most common side effect from dilantin was low birth weight, and my kids were 9-15 and 9-4!!! And they seem to be very healthy at the ages of 15 & 13!! So again, I have been very fortunate.
I just don't think my quality of life is so hot, between depression, anger, no sex drive, memory problems, and the thought that I will probably have a shorter lifespan due to the dilantin.
Thanks again for all of your comments. I will continue to read the board and see if others have the same problems and how they were helped or learned to cope better. Maybe I should try a good specialist. Someone who can understand and not have such a superior attitude, even when they don't know what they are talking about, like that last dr. did!!! KJ
[This message has been edited by kjgems (edited 02-01-2003).]
I realized I didn't answer some of your questions in that last response and I hope I get them all this time. (I wish we could read all of the replies below, while we are on this screen to do our reply!!)
Nic, thanks for your kind words. I hope things get better for you. And to the person who said your cup is half full, congratulations! That really is the way to see things, always looking at the positive! I just know that if there is a way to have even more positives, I want to find it!!
Whoever mentioned forgetting your childhood, that is so true. I remember some things, but the best way for me to remember anything is to have pictures, etc, and look at them every once-in-awhile. Talking about it keeps it in my mind, too, so it's easier to remember. When I have more time I want to really work on some scrapbooks, because I am truly afraid I will forget all of the things I did with my kids. I think scrapbooks help. People think you don't care enough to remember, but you just can't help it.
Somebody else mentioned the type of seizures they had. I just know mine were grand mal. I don't know if I had any petit mal or not. Since 19, the only ones I have had have been during sleep, and there really wouldn't be anyone to notice anything other than the kind that really make you move. Those wake my husband up!! We have a water bed now, so I don't even fall out of bed. I wouldn't know if I had one, unless I bite my tongue!! And the docs were never able to tell me why I have them. I think they call that idiopathic (no known cause?) I sometimes wonder if it was from a vaccination around the age of 2. By the way, I always had a high IQ and did well in school, but from about 19 on, I became less competent. Stress easily, seem airheaded, etc. I know you all know what I mean!!
I hope all of you have luck getting your specific difficulties worked out. I guess everybody has a cross to bear and this is ours. I know I still have many things to be thankful for. God be with all of you!! KJ
You better believe those meds can cause you problems with memory and mood. The trouble is not everyone is affected the same way or amount, just as you will see on this board. When I asked my neuro what was causing my problems the seizures or the meds he answered - "probably both". In other words he didnt know either.
Dilantin has given me depression, mood swings, bad memory, and swollen gums. But its the only one that comes close to controlling the demon for me.
Yup, that's the problem I have with Dilantin. It works so well, nobody wants me to change it. My husband doesn't want me to try anything else because at least the seizures are controlled. It scares him so much when I have one!! But I don't know how he can live with me being as moody as I am. I still feel like it's the epilepsy or the Dilantin, and many of you on this board have said you think it might be, too. So I think I am going to look for a really good Doctor. I'll do another post about how to find one.