I'm new here

[thjr59]

My first seizure was when I was 12. There was no reason for it, but it just happened. I was swimming in the pool for a while and I felt tired so I went inside and laid on the floor and fell asleep. The next thing I remember was waking up in the hospital. Then I was put on dilantin. I've been taking it for about 36 years now. I've been on it so long that I'm wondering what effects that it is doing to me. I know it causes liver problems, but what else I don't know. I'm only on 400mg a day of dilantin, but I would like to stop taking the medication. I've had 4 grand mal seizures in my life, but I'm for the most part controlled. I believe that 3 of my seizures were from the doctor trying to get me off my meds. Well thats my story.

[BuckeyeFan]

Come on in and have a seat. This is a great place to relax and get answers to questions like yours.

You have already found another dilantin user like yourself (27 years). Actually, I am on a form of dilantin called phenytek. It is another brand name of dilantin, only it is time released. I alternate 500 + 600 mg every other day to achieve my most effective levels. I also take 1500 mg of Keppra each day. This combination has kept me free from tonic-clonics (grand mals) for almost 5 years now.

If I do my math right, we must be about the same age. I am 47, a father of 3, a grandpa of 2, and have had E since I was 20. There are several threads here about dilantin side effects and long term use. For most, it is not terrible, but definitely not good either.

Two suggestions. First, do not go off your dilantin without the help of a QUALITY neurologist or epiletologist. If the withdrawal caused any of your other seizures, it is vital that any future attempt be safely monitored.

Second, I hope your doctor is monitoring your liver function/enzymes. I used to have elevated levels, but for the last several years, mine has been OK. But close monitoring is important.

I hope you visit often. This is a great place to learn, VENT, or just hang out for a laugh.

Have a cup of my best coffee!

[thjr59]

I just turned 49 and have 2 kids. My oldest now lives in Hungary. He got married after getting out of the marines and moved there with his wife. This web site makes me feel like I'm not the alone out there with epilepsy.

[Bernard]

Hi thjr59, welcome to the forum.

Long term use of Dilantin can also lead to bone density loss and osteoporosis as well as dental problems (receding gum lines). Ranman has been on Dilantin about as long as you have and has posted a bit about his experience with long term side effects.

FYI: Stopping drugs when seizures have been controlled for years

[morgan381]

Hi! Welcome to CWE. I've only been here for a month or so now, but I think this place is wonderful. It's so nice to be able to talk to others who are in a similar situation. It's a gold mine of information. I hope you enjoy it here as much as I do.
Again, welcome
Morgan

[skillefer]

Hi thjr! Welcome to CWE. As you can see, we're a pretty friendly bunch. I don't use Dilantin, so I wouldn't know what the side effects are. Do you know what triggers your seizures? That might help if you decide to try to go off the meds again. Also, check the info on alternative therapies in the library here. I'm using a combo of meds and vitamin supplements. Feel free to ask any questions, give us your two cents, or just rant whenever needed. We're here for you.

[thjr59]

I think certain lights trigger my seizures but am not sure. Sometimes when I'm in a store I feel like I'm going to have one. I get kind of a dizzy feeling. When I leave the store I feel better but it takes a little while. My doctor says that the light shouldn't affect me according to my test results. But I don't know.

[skillefer]

Hmmm....it could be lights....try getting blue polycarbonate sunglasses and wearing them to the grocery store. The lenses actually have to be blue though, and not just regular lenses with blue tint. Supposedly, the blue lenses are supposed to cut seizures by up to 50%. Just a suggestion. And no, I can't remember the web site where I got the info...*sigh*

[joey]

hello thjr59 this is a pretty helpful website in many ways im fairly new here and its a good place to open up and talk about things that you would not normally share, and its a good place for general information about epilepsy,

[thjr59]

I wish I could of had something like this web site when I was younger.

[ashmstng]

Hello thjr59~

Welcome to CWE Board. I hope you enjoy it as much as I do. I have met alot of wonderful people and learned alot of new things on here. Enjoy!

[hawke86]

Welcome aboard. I hope you enjoy your stay thjr. Again welcome aboard.

[alivenwell]

HI !! Welcome to our home!
It's a good thing you left that pool. I had a very similar experience with a warning in water, and got out just in time. Paramedics were staring at me when I woke up. Freaky... I think we must have a purpose to live.

I used to be on Dilantin also (over 20 years ago), but I switched to Lamictal and Mysoline. They all affect bone density. I'm taking calcium supplements and vitamin D on the side. They have some really great tasting calcium chews with the vitamin D included in them. I had to add a little more to my dosage than the average prescription.

[RobinN]

Welcome to CWE
My daughter is doing well without meds at the moment but she has never been on anything for an extended period of time. I felt that the side effects of many of the drugs was not worth it. If it were me (with a doctors knowledge though most likely not with their blessing) I would take a grain away each week, and sometimes keep it steady for a few weeks. Keeping track of every change, thought and feeling. That is what i would do if it were me dealing with meds.

I wish you well.

[seizures4ever]

Hi there! Welcome to the forums. I haven't been here very long either. But I have forum-hunted for epilepsy sites for many years (about fifteen), and so-far this site gives the best first impression. It seems to have nice, intelligent, nonjudgmental, FUN, forgiving people. In addition, there does not seem to be a lot of fighting and bickering and constant thread locking. So Welcome! Come and share, have fun, feel safe, and make some new friends! -Julie

[Meetz1064]

Nice to meet ya, and how do ya do???

Up until a few years ago, I, too, had been on Dilantin for almost my entire life. I think I've been off it for a grand total of 7 years now? Maybe. I'd have to think about that. Anyway........for some, it causes more of the dental problems --puffy gums, excessive bleeding, receding gum line-- but for others it causes the osteoporosis, elevated liver enzymes and more. It would be wise, I think, to ask your doctor about your blood tests....how they've been looking, etc. And ask about a bone density test, too, just to be safe.

Some people aren't that badly effected by it, though......it simply works on their E, and that's it. Which I don't understand, but whatever......

You've found a great place to be, here at CWE. Mr B (Bernard) has made a wonderful home for all of us, so please, stick around, and make yourself at home!

Toodles!

Meetz

[tinasmom]

Great to have you here thjr
I also wish I had this forum when my oldest was going through her seizures. I have learned so much and everyone has been so wonderful.

[thjr59]

HI !! Welcome to our home!
It's a good thing you left that pool. I had a very similar experience with a warning in water, and got out just in time. Paramedics were staring at me when I woke up. Freaky... I think we must have a purpose to live.

I used to be on Dilantin also (over 20 years ago), but I switched to Lamictal and Mysoline. They all affect bone density. I'm taking calcium supplements and vitamin D on the side. They have some really great tasting calcium chews with the vitamin D included in them. I had to add a little more to my dosage than the average prescription.

One of my seizures was in a pool. Not the first one but the second. I was on a raft and the next thing I remember was being in the hospital again. Luckily someone looked out of the window and seen me laying on the bottom of the pool and got me out. I guess it wasn't my time.

[Elaine H]

Hi There

Make yourself at home, if you find this website as helpful and comforting as I have then you'll be fine, we all have that wonderful bond, and it is a great place to "let it all out" I have just had my second lot of brain surgery, and the guys here have been absolutely wonderful, I hope you enjoy your time, and remember, you are so not alone!

God Bless!

Elaine x