Hi, this is new to me and kind of scary

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maureen

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Hi,

I'm glad I found this site. This is all kind of new to me and reading other peoples experiences tells me I'm not crazy or alone.

A bit about me:

I was hit by a car in 1979 and was in a comas for 2 weeks. During that time I had a couple of seizures. I was on Dilantin for about a year or two then weaned off of it.

Fast forward to January 2005. I had a seizure. My drivers licence was suspended 6 months, I had all kinds of tests. They could see scar tissue on my brain from the head injury in 79 but couldn't explain why I had a seizure. I got my licence back Aug 17, 2005. Only problem, I had a seizure Aug 12, 2005. I am back on Dilantin. After a year and a half and juggling dosage, I got my licence back.

I bought a new car (I'd always had used) in August. September 15, 2years 1 month and 3 days I had a seizure!

Talk about frustrating. I figured that the medication would do the trick, I wasn't 'really' an epileptic.

My neurologist, husband and I have been trying to figure out why this happened. We have adjusted the time of day I take my med - the seizures happen at the end of the dose when the levels are lowest? I was exhausted having worked 11 out of 12 days, I was going through a management change at work. I was going through a stressful situation at home.

Now I'm trying to get it together, try and figure out how to avoid triggers, how to not get frustrated with Dilantins side effects, you all know the story....

Thanks for listening
 
Hi Maureen ~ This just sucks, doesn't it? My seizures mysteriously started in '90 when I was 46. Lots has happened since then.

Could I suggest you ask your neuro about taking Dilantin TWICE a day instead of just once? How about trying a newer medication than Dilantin? There are dozens more AEDS and maybe some/one would be more effective for you.

Many people will be here to talk to you and offer suggestions based on experience and knowledge. We all wish you the best.
 
Hi maureen, welcome to the forum. :hello:

Are you taking the brand name Dilantin or a generic phenytoin? Studies have shown that the generics don't metabolize into the blood as steadily as the brand name.

Make yourself comfortable here. :)
 
Welcome maureen,

Dilantin was the first medication I was prescribed and took consistantly for 5 years at varing dosages along with a laundrey list of add-ons.

One thing I found was that generic was NOT the same as name brand when it came to dilantin. Also because of the half-life, I took it morning and at night.

Medication works most effectively when taken at the same time every day. And you must take caution with what you eat or drink with some medication. Some you must take on an empty stomach, others after meals, some with nothing other than water others are less effective if taken with milk or grapefruit juice.

The same holds true for getting your monthy bloodwork. Try to get it done at the same time as the levels will fluxuate with the day.

Check with the pharmacist for the best way to take any medication.
 
:hello: Maureen!

So sorry you had to experience seizures again.
It just stinks!

OH by the way! Dilantin has a new look! Gone
is the White with the middle Orange band and
it now is Half Orange and Half White. I was
a long time Dilantin / Phenytoin "user", but
not on it anymore.

But welcome aboard to CWE!
 
Hi maureen: Welcome to the board , Nice meeting you!!!!!! I have never driven in my life ,but now that I am off meds I am thinking about leanring how to drive. My husband is in shock because I never wanted to learn before, and when he tried to teach me I had no perception. So I am going to give myslef a long time to develop the perception. I have always lived where there is public transportation.NYC,Montreal CA,
and now Portland.

I am allergic to dilantin, so my meds were zarontion and mesantion (mesantion is no longer available),or tegretol and mysoline, or mysoline and lycria.

Looking forward to getting to know you
Riva
 
Hi Maureen,
I hope this forum can help you with finding the answers that you need.
Knowledge is so helpful.
 
Hey Maureen, Welcome aboard! I am also new to this sight. You and I have some things in common-I too was in a bad car accident years ago, except I did not have any events until 1997 when I had my first blackout. Life changed on a dime!,but I have gone thru some changes. For one (this is my own decision and I am not recommending) I dumped the meds-couldn't handle the side effects. Of course after two years of smaller events I got nailed by a series that lasted 20-40 minutes...back to the doc and tests (I will be a glow stick for Halloween). Tomorrow I get the final results--little nervous since I think there has been some damage and I'm not sure what direction to take....Oh well I'm standin' today!
 
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