Hello,

I am new to this list and am so glad I found it. I have been dealing with issues of decreased self-worth and anger since I went on dilantin. Here's why. I'm 28 and was diagnosed with epilepsy in Feb 2003 when I had a gran mal seizure while writing a law school paper. An MRI showed temporal lobe epilepsy, a pre-existing condition that hadn't shown itself yet. I was put on dilantin--300 mg. Things went well until a few weeks later I had what appeared to be another seizure so my neuro increased it to 350 mg. From then on my life was hell. I had almost no drive to do anything, total lack of concentration and terrible memory loss. There were other weird things that showed a lack of control over my brain. I didn't realize that dilantin was the problem until after my second final. For the first two I couldn't remember much of anything despite having studied my rear off. I told my neuro I thought the meds needed to be dropped after some research on the web. She reduced it to 300 again and within days it was like a new lease on life. I was myself again.

The summer was great but now I'm in school again. The memory loss is worse than ever (still on 300). I have to make lists (even to take my umbrella when I leave the house) or I don't remember anything at all. I forgot my locker combo after several weeks of using it. I can't remember anything I read and when I get called on in class and put on the spot I feel like an idiot. It takes me so long to even figure out what the teacher has said and I can't respond like the others. And now I can't concentrate for my life. I have to read a sentence 3 or 4 times for it to make sense. This is hard for me because I was valedictorian of my high school and graduated at the top of my college class. I fell from top 1/4 in law school to just over 1/2 because of last semester. And this came at the crucial semester which in large part determines the jobs I get when I get out.

I am angry because my neuro despite being really nice never told me what to expect. I thought I was just going through typical law school stuff. And yet all over there are warnings about this drug and testimonials of people who have had similar problems. I feel like the last semester of my life was robbed.

I have some different questions for anyone who cares to respond, in addition to any other comments.

1) How have you learned to cope with this in terms of going from having a sharp to having a dull mind and dealing with what other people might think such as in a law school situation?
2) Tell me about your memory before dilantin and after.
3) Has anyone decided to not take the meds at all or tried alternative therapies? I am considering this.
4) Has anyone else's grades/performance dropped sharply and then have you brought this up in interviews to employers? What was the reaction?
5) Do you feel like you have to have a medical degree and resolve this problem yourself since no one else seems to know the answers?

I am open to advice and would be very thankful for it. I don't know who else to talk to and this is plaguing me everyday. Thanks so much.

JJ

JJ Dear,

I am tearing up reading your post. I have felt the same way you do on numerous occasions. All of what you have stated is a side effect of ANY anti-seizure medication. I will attempt to answer as many of your questions as possible. It may not be what you need to hear but it will be honest and with nothing but good intention.

1) I could remember where you buried your car keys in a desert 30 days later. I had a memory like an elephant and now THIS!! I can't remember what I was told 10 seconds ago sometimes. It is frustrating I know. The meds, any anti-"E" meds, will do that to anyone. Frustrating indeed but a fact none-the-less. I have learned to cope by explaining to everyone my situation and keeping a notebook (very small) with me at all times. Did you tell your school that you might need a little extra help in classes due to your disability?? Under the ADA, you are entitled to it and they are required to give it to you with NO repercussion. I know it is hard but I think we are all still trying to figure it out and how to deal with it. We all have our own tools for managing. Mine is the notebook.

2) As I stated in 1, I had a memory like nobodies business. I do not take Dilantin nor have I ever but the Neurontin that I take is just as bad. ALL of the ASMs are the same.

3) I have Complex Partial and simple partial seizures and have since the onset of my "E" just a little over a year ago. I went off my meds for just a few days for a test I did at the hospital (VEEG). I took myself off gradually like they said to and on my 3rd day there (5 day study) I had 2 gran mals in one day. I had never even had ONE in my life but had 2 in one day. Not a good thing to take yourself off. I am unsure of alternative ways of treatment but I wouldn't chance it personally.

4) I am a 32-year-old woman with three kids a husband and an almost full time job outside of the home. I don't have grades to maintain but a household I do. I never had a performance drop on my job but if you count having a seizure at work a 'drop', then I have. I am now in the process of bringing up charges to my employer due to privacy rights that were violated and now they wont let me back to work unless I disclose this private information to them. The ADA and EEOC are both looking into this for me and I find my lawyer Tuesday to start the process. You are a law student, look up the ADA and read the part where you do not have to disclose any medical info to your current or prospective employer EVER!!! That means even telling them that you have "E". Did you know that??

5) It is all a matter of time before you will have control again. You may never have it again but let me tell you something if I could. These are the words I HAVEto live by...

ALL WE HAVE TO DO IS DECIDE WHAT TO DO WITH THE TIME GIVEN TO US

I live by these words because I didn't ask for "E" nor do I want it. I wish all the time that this never would have happened to me and always asking, "WHY ME"? I have to do the best that I can IN the time and WITH the time that was given to me. I can't change it nor can I take it away...This time was a precious gift to me and what am I going to do with it?!

Hope this helps hon.

God Bless you,
KittyMom


[This message has been edited by KittyMom (edited 08-31-2003).]

I began having GM's just before I turned 30 (10-1/2 years ago). 3 in one day, no apparent reason other than my stress level going through the roof. I don't remember those first 3 days of dilantin at all. But, man was I sore all over for weeks. I was just basically told to take my meds and get a medic alert bracelet and not to drive for a year.
About 5 months later (still in denial about my "condition") I slowly discontinued my dilantin. Bam, another GM. Back on the dilantin again. At one point my neuro told me that is was a "very sick young lady". I wonder, if I'm so sick, why does everyone expect the same of me as before?
Anyway. I've been on dilantin for over 10 years (with the exception of a trial of tegretol for a few weeks, ugh) and now find my body/system is on a very delicate balance. Any increase/decrease in meds takes weeks to get used to. My daily vitamin intake needs to remain constant. I get tired easily (yeah, so I'm 40 - it's not that old, right?). I get a lot of headaches (SP activity).
My most recent neuro told me that I would probably be a "much sharper individual" without meds, but then I would have seizures.
So, basically the moral of this is you have to decide what you want to live with. If you are happy with the seizure control, stick with the meds. If you feel there is a better way, explore the alternatives. Perhaps a break from Law School while you are attempting to achieve the control you are happy with. Maybe you just need a different med, or adjunct?
For some,there's biofeedback. Epilepsy clinics, etc.
Lainie

Hello JJ, and welcome to the board!

I understand completely the affects of Dilantin. I went on that orginally 4 months ago, and could not funtion well at all. I am 32, and my mind was as sharp as a tack. I immediately had trouble remembering things and was so frustrated. I also had trouble thinking clearly and it seemed like it took me longer to just figure out simple every-day things. I felt like everything I did was in slow-motion, if that makes sense.

Ny neuro changed me to Lamictal (I have now tried 6 different Epilepsy drugs in all), and let me tell you, that was by far the best prescription for me. I had VERY little side effects and felt "normal" again. I have heard alot about that from people. In fact, I met someone at my support group a few weeks ago that said he had been on seizure medication for 10 years and when he took Lamictal, he thought "So this is what it's like to feel alive". The only problem with it is in some few instances, it can cause a rash (I don't think too likely) and unfortunately I got it and had to discontinue use. I have been on several since then, and have felt "drugged" 24/7. I'm not a doctor, but maybe you could try to get your meds changed, that may make all the difference in the world to you.

In regards to doing your own research, etc, I have done a TREMENDOUS amount on my own because that's what seems to be the best results for me. I have also joined a support group in my area and have gotten a tremendous amount of info from going to that. (This was a group directly from the Epilepsy Foundation).

The meds are making me feel like a zombie all the time...I'm to the point that I would rather have the surgery or try some kind of other alternative. I have done research on the ketogenic diet, and would almost be willing to try that.

Another thing too is for instance my neuro sees patients for all kinds of problems. I am thinking about possibly finding an epileptologist who specializes only in seizures and Epilepsy.

Hope any of that helps you. But again, the Dilantin was terrible for me. I literally couldn't remember every-day things, plus my mind just seemed to work so SLOW.

Take care, and hopefully they will get you on something that helps you!

Amy

Hello,
I too, understand how you feel regarding adjustments to taking a drug such as dilantin. I started on dilantin 28 years ago, at the age of 21. I never had seizures before, but one morning I had two grand mal seizures, one after the other. Since then, I have, at times gone up to 5 years without a seizure...but, they do return. I did stop taking dilantin (300 mg) when I was pregnant. That was my own decision, not advised by my doctor. I usually have at least one seizure a year, sometimes 2 (usually brought on by stress and sleep deprivation). I want to encourage you!!!! In 1997 (in my 40's) I went back to college and completed my BA, and then went two years (full time and working) for my masters in counseling. In just one month, I will have completed 3000 hours of internship and will apply for licensing. It was a lot harder for me than other students. I did not tell anyone until I had to call and cancel clients at the college counseling clinic because of the grand mal seizure. My professor was very understanding. Now, I have to monitor myself...and try to listen to my body. I was truly devastated last year when I had a seizure in my office with clients. It really scared them. I wanted to give up, but my boss was great. I had another seizure in July, so the doctor added Keppra. I could not tolerate the drug, so I stopped after two days. My dilantin level was upped to 330mg a day, and I am tired all the time. I cut back and only take the extra 30mg every other day. I cannot recommend what you should do, but I found out that I am the only one who knows how I feel. I KNOW that over 300 mg a day makes me tired and brainless. I have had to take detailed notes after each session and be sure to re-read my entries before the next session. I truly PRAY that God protects me, and helps me stay sharp at my work. It's when I get home that I am truly exhausted. My poor husband!!!!! Sorry, I am going on forever. I hope some of this is helpful for you. GOd bless you and keep you safe.

Dear JJ
I started having GMs at 17 and went onto Dilantin, which drove me crazy. I eventually dropped out of Uni and, even worse, out of rock music (in those days all the gigs had strobe lights,and they used to give me myoclonic seizures, which , for me, is a GM aura). But one day I bit the bullet and went back to Uni and got a degree. I never had a GM on campus, so it was OK. So there: it can be done.
Incidentally, I switched to Epilim, one of the Valproates, and my side-effects disappeared as if by magic. With my renewed confidence I kept on studying and got a few more degrees. Ho Ho! What fun! Just thought I'd let you know I made it. The Epilim does tend to slow down my thinking a bit, and afer all this time (I'm now 55) I still haven't decided if I'm prepared to settle for that. At the beginning of this year I decided to slowly cut out half of the E so that I could speed up my brain and undertake some writing projects. Since then I've written 3 books (including one on epilepsy!) and I've had one GM (and it was a beauty). So that's the price. Am I scared? Bet your life. And I still haven't decided what to do. Well, all the best JJ. I'm on your side.
God bless
Peter

So JJ...Have we totally confused you, or are you more informed?!? http://www.healthboards.com/ubb/dizzy.gif

I am 49 years old. I began having seizures two years ago. I have gran mals and partials. My experience with Dilantin was not a pleasant one. I felt as if I was "thinking through mud!" http://www.healthboards.com/ubb/confused.gif I thought my mental confusion and memory deficit was from the seizures (fried brain cells.) After complaining about it over and over my Doc switched me to Carbatrol. I felt better....clearer in the head, but still pretty screwed up. Then I switched Doc's....got myself a seizure specialist....my HERO!!! http://www.healthboards.com/ubb/round.gif The new Doc switched me to Lamictal. (I'm still not completely off the Carbatrol.) I am feeling SO much better. I continue to have partials....haven't had a GM in over a year!!! I still have memory problems occasionally, but I feel like a million bucks compared to my Dilantin Days.

My suggestion is to talk to your Doc about switching meds. I'm not going to suggest a particular drug, because each of us is different. My seizure specialist hero said that his goal was for me to be "seizure free and symptom free." I thought the guy was a quack! But, I feel so much better and I'm so much happier nowadays. I hope you find the same relief that I've found. Hang in there. Don't feel discouraged...better days are coming. BUT, you need to be a self-advocate! Be well, Kathy

I am trying to become an accountant and have an exam tomorrow.

I should have studied all weekend but find I cannot concentrate worth a damn anymore.

Ever since I started on dilantin, then tegretol....I lost all interest and ability in my school reading and learning.

I only have a couple of courses to go...and have no idea if I'm going to be able to pull through.

http://www.healthboards.com/ubb/frown.gif Sad indeed.

JJ,

You still out there dear?? Hope all is well and write when you can.

God Bless,
KittyMom

Hi JJ,

Welcome to the board! Hope you are studing either law or E and not just off going OH MY GOD!!!

My names Lisa and my little boy Jake has TLE with a left side focal. Jake was 10 mths when he was placed on Dilantin, he's currently 20 mths. It was the most horrid time in my life, to see your child stop in his little developmental tracks is heart sickening. For Jake it wasn't a matter of memory loss or "fog brain", it truely impacted his development. He's been off it for over a month and the difference is amazing. http://www.healthboards.com/ubb/smile.gif

There are other drugs out there that are so much less intrusive to your cognitive thinking. Trileptol, Lamictol just to name a couple.

The bottom line is that this is YOUR condition and YOUR life! Learn all that you can about TLE and the other seizure types. Learn what each med is doing to get seizure control, some work as an inhibitor, slowing rapid neuron firing, some work as a conductor of sorts - these allow neuron activity to work through slowed areas of the brain, etc.

Jake's first neuro told us that the best thing we could do for our son was to learn about Epilepsy, to trust ourselves and question his care if we felt something wasn't right! Trust me we have done just that!

Best of luck in your studies, you will get through it!

Love and light,

Lisa and Jake