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Old 10-31-2002, 12:43 PM   #1
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Question New, just really learning about epilepsy

Hello everyone, My name is John and I'm 24. I've had a seizure problem / epilepsy for around 10-12 years now. It started about a year after I had a bicycle accident where, flying down a hill I hit the brakes and flew over the handlebars. The resulting skid on the dirt road pounded a rock into my skull, denting it slightly and requiring 3 stitches. I first noticed a problem on the school bus with what I now know are absence seizures. It usually happened when I was talking fast to someone, and I'd mumble, forget and glaze for a second or two.

After various tests, (CAT, MRI, and finally EEG), I was diagnosed with a seizure disorder. The word epilepsy didn't show up until much later. I was put on Valproic Acid for many years until about my Junior or Senior year in High School. (Having switched to Zarontin if I remember the name correctly, and eventually Dilantin.) Having been seizure free, my doctor told me that she thought we could try weaning me off the medication. It worked fine and for 2 or 3 years I seemed seizure free. I went to college and didn't have a problem.

Until a calculus test. During the test, (from what I was told), I grabbed the desk and tensed, then both of us went over and I had my first grand mal seizure. I woke up with students, my teacher, and several EMT's standing around me. I, of course, had no idea what had happened and just wanted to relax and get my bearings. (I got quite upset when I was asked what year it was and couldn't remember) I was then foricibly grabbed, thrown into an ambulance and taken to the hospital where I was given an IV of Dilantin. The pain in my arm where the IV was given was incredible and the dose had to be lowered until I could take the pain. I was in for a few hours and finally released.

Hoping that it was an isolated incident, life went on as normal. Until the next year (I think it was the next year, my memory is really terrible)where, during yet another calculus test, I had another Grand Mal seizure. Because of my terrible memory and the fact that both seizures happened during a calculus test, I can't remember what happened after I came to. I belive I was taken to a hospital but refused the Dilantin IV and was given pills instead.

Since then I have been put back on the Dilantin. After flunking out of college due to several problems only partially due to the seizures, I moved in with a friend and had no real problems. The occasional jerk or twitch... I continued to work with the doctors to maintain a good Dilantin level.

After a while I moved into my own apartment. Things were fine until one day I woke up at my computer feeling extremely weak. My tounge had been bitten and one of my fingers had a cut on it. Luckily, my computer chair is big, has arms, and was pressed up against the desk so that was the extent of my injuries. I thought I just fell asleep. I didn't have the confusion that followed the others (probably because I didn't have people waking me up) but felt extremely sick and weak. I stood up, called my parents and they took me to their house to relax for a while.

I now have the occasional spasm or slight absence seizure. I never really learned much about epilepsy until now. Partially because the doctors never gave me much information (I have to pull teeth to get answers) and partially because I was and still am to a certain extent in denial. I get very frustrated when the aura's come or I have an absence seizure.

I want to post here because I haven't ever spoken to someone with the same problem, I don't know much about epilepsy, and I want to know what I can do to help my body and my mind cope better with having this problem. All in all, I feel lucky that the problem isn't worse... but dealing with something I have no control over upsets me so much...

I seem to have three major triggers. Sleep deprivation, stress, and major concentration. The more I concentrate on something, the more the seizures seem to stir. (This became extremely upsetting in school where I needed to study, and sometimes now at work)Lights and motion don't seem to bother me, but I try to stay out of strobes and away from blinking lights. They've always seemed to make me feel sick to my stomach and since flashing lights have always seemed to be a common trigger, I'm not sure if they are a trigger to me, or if I'm just afraid of them being so. The only other problem that gets me upset is my terrible memory which I'm just seeing now might be caused by the epilepsy or the medication.

I currently take 800mg of Dilantin per day. (4 100mg tabs in the morning and evening)I've never adjusted my diet (which isn't so great, but I try), and my doctor didn't seem to think any special diet was necessary. It seems to me that when I mention to my doctors something that I've read might be a cause or might seem to make things better, it gets shrugged off.

I'm wondering now also if there are other medications that I should be looking into, changes to diet I should especially look for, people that have similar problems, and for any information I can obtain to help me deal with this problem.

Any comments or suggestions would be greatly appreciated. Thanks!

-John

 
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Old 10-31-2002, 03:14 PM   #2
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John...

Everything that you are mentioning sounds so much like my boyfriend Patrick, who is 26.

I joined this board to learn more about Epilepsy too, as Patrick began to have seizure episodes after he moved from Arizona to Wisconsin to live with me. Before that, he had been seziure free and off any kind of medication or diet since the age of 19. We do not know what is causing his new bouts of Epilepsy and we have an appointment later in november to see what is going on. Since he had moved here only recently, he had no family doctor here, so he had to start over. The doctor didn't listen to anything he said wither...which really frustrated me because I am a total "take charge" person and this was something that I couldn't "take charge" of. Finally the doctor prescribed him Depakote, which made him feel so much better...most of the seizure episodes were tamed, although he does have a problem feeling lethargic and he sleeps alot.

Patrick is frustrated often by his epilepsy. He feels like it keeps him from being "sharp"...or being as mentally agaile as he knows he can be. He says it is like his brain is lazy...and it stifles his creativity (we met on a writers web page), which is something he struggles with constantly...not having the mental stamina to creatively write...or write his music. He has some good times with it and some bad...it comes and goes.

When he was 18/19/20, his childhood epilepsy recurred and he ended up having to leave college...with nothing but incompletes. This threw him int a pit of depression...but he used knowledge to help him get through it. He started reading about his epilepsy and different ways that people have dealt with it (the book "Seized" is a very good one, and he learned a great deal from it). The understanding made it easier for him to deal with.

Patrick doesn't have Grand Mal seizures, but he has small "tick" like episodes, and his vision is always affected with auras and Alice In Wonderland syndrome. He says that when he is tping or concentrating for a long period of time, that he starts to have that feeling of seziure activity coming on. Stress, sleep deprivation and alcohol have all brought on the episodes...which sucks, because at our age...we tend to have or want exposure to all of those things..lol. But he is doing alright on the Depakote, and now, he can even have a couple beers and feel fine, which was impossible just a couple months ago.

You need to demand information from your doctors and you need to make them listen to you. Do you have a special doctor...or a nuero...who do you see? You need to make them inform you. Dilantin is a heavy drug, I think...do you really need it? Would Depakote or Tegratol work for you? Ask these questions. There are many medications out there...Dilantin may work the best for you, but there may be something BETTER that will make you...well, more "you". I am SERIOUS...unfortunately...doctors are too comfortable...we can't be complacent patients...DEMAND the information...(or try different doctors...the best case scenario is to find an epileptologist...someone that only deals with epilepsy patients)....the quality of your life is just as important as stopping the seizures. Learn as much as you can...then it won't seem as frustrating and scary...and you won't need to deny it any more.

Learning has helped me...for awhile I had all these questions..."can we have a normal life together?", "what do I do when he has a seizure?", "how will he act when he is having one?"...but I feel much better now, and more in control of my own self, just because I am trying to understand it. That is why I come here. I now like that he is different, and that we can help to manage his epilepsy together.

Patrick is now, once again, a full time student. He also holds a full time temporary job. A few months ago, just handling school would seem too much.

Good luck to you...and keep coming here and reading up on stuff. Keep me posted...and most of all..

Welcome

~ Anabel

------------------
"Life is what happens
while you're making
other plans"~John
Lennon
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"Life is what happens
while you're making
other plans"~John
Lennon

 
Old 11-04-2002, 11:43 AM   #3
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Thank you so much for your reply. Hearing these things helps a lot. I think even to know something that is fact is made so much better by having someone actually validate it. heh

The problem with the Dilantin seems to be that it may not be working to the full extent it should. I started off (after the inital Grand Mal) with taking 6 pills per day. Then we added a 30 mg tab in there, then 2, then we jumped up to the 8 pills at 100mg each. It still seems that I'm having some problems with the absence seizures and the "jerks" (myoclonic seizures, I read they are called...) Now what I'm wondering is, is the medicine doing it's job but my lifestyle needs to change as well to make sure the medication will work to it's full extent, or is the medication not working?

One of the problems I have is taking the medication on a strict schedule. More recently I've been getting better at it. Taking meds at 8am and 8pm... a schedule SEEMS to balance things out more and reduce the amount of seizures... but if I'm taking an anti-convulsant, shouldn't I be seizure free if the level is controlled? Or does it just reduce my chances of one? This is something I've never been clear of... and I've been lead to believe that the former should be true, since my doctors have just said, let's try an increase. Do things such as your diet, sleep, and a schedule actually LOWER the amount of Dilantin in my system? I know you can't all possibly know the answers to all of these questions... but it helps to pose them to someone while I wait to see my doctor. One of my problems seems to be formulating things clearly these days, as well as logically figuring things out. Just gets jumbled nowadays.

I count myself lucky, even with all the confusion, etc... I have minimal problems at my job, and everyone knows about the problem. If I have a problem, I just relax for a few minutes and can usually jump right back into work. Of course, I have to learn to keep aware that I can get hurt in some instances if I have a problem. While I was in college, I waitered at an on campus "restaurant" for a year for spending cash. I ended up spilling a nice hot mug of coffee on my arm after having a spasm. No real harm was done, but it woke me up to the fact that there's some things I just shouldn't do on a regular basis. heh

How do I know when the problem I have is my epilepsy or Dilantin, or whether it's just me? I've never wanted to start "blaming" my problem on faults of my own. But it's tough for me to correct a problem when I don't even know where it's coming from. And if I do feel a concern that it might not be me, I feel foolish for suggesting it. Am I over-reacting or do I really have legitimate claims that I could clear up with different medications... or is it something that is a side effect of having epilepsy... that I'm just going to have to live with?

I currently have a neurologist. He's one of the better doctors I've had, but doesn't divulge enough information. I'll make a list for him for the next time I see him. (I planned on doing this the last time and only remembered certain things for the visit. heh) I'm also planning on requesting another blood level soon... see how things look.

On another note, how reliable is surgery? Has anyone had any done or can anyone give me any information on what types of surgery is available, or how you are a canidate for surgery? Any information on success rates? I'm really scared of the surgery angle... but if it can fix the problem... just more to think about...

Thanks again for listening, and for the support.

-John

 
Old 11-04-2002, 04:25 PM   #4
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My son at first started taking Tegretol for seizures and he still had seizures but they didn't seem as bad. The neurologist changed him to Depakote and he didn't have any seisure while he was on the Depakote.

Maybe they need to try a different drug?????



------------------
Mother of 15 year old son, Jared, born with Hydrocephalus and takes Depakote for seizures.
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Mother of 17 year old son, Jared, born with Hydrocephalus and takes Depakote for seizures.

 
Old 11-05-2002, 10:22 AM   #5
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That's my next step... if things don't level out soon. The biggest problem is having to run 2 drugs at the same time. Gets costly. But now that I'm learning things, I'll have a whole mess of things to discuss with my neuro. He's going to have fun.

 
Old 11-07-2002, 03:51 PM   #6
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JSP, if Patrick doesn't take his Depakote at the zsame time daily...he feels awful. If he misses one dose...he gets disoriented and his head pain (the "warning" of his seizure threshold) comes back full bore. He is doing well with the Depakote...I call it a bit of a God-send myself. I think it may be in your best interests to try some of the other medications out there...you may find one that really helps you much more than the Dilantin. One thing I DO know about different meds is that you have to give them a chance to work...for your body to get used to them.

One thing that I think is incredibly interesting about E is that it seems to be unique to every one person that has it. It has it's own "intellegence", for lack of a better word. Different things work for different people because everybody's E is different.

Patrick has said that the older that he gets (as he has dealt with "on again, off again" episodes of his E since he was a baby) the more he appreciates what having E has done for him...rather than dislike it or hate it, dealing with it has made him stronger, more calm, creative and spiritual. He does have times when he gets discouraged and depressed...those are the times when he just needs someone to point out that what you make of it, and how you deal with it, and what it does to you is all "up here" *points at the noggin'*...

Keep us posted..
Anabel
__________________
"Life is what happens
while you're making
other plans"~John
Lennon

 
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