Dilantin levels - Epilepsy Message Board

Lee1672 · 11-22-2007, 05:22 PM

I take 550 mg of dilantin a day every am @9:00 for awhile my levels run where they are supposed to then like I have had 3 breakthrough siezures in the last ten days because my level is down to 7. I get plenty of sleep, no stress, eating right so my question is, is there a vitamin or mineral level that would deplete my level all of a sudden like that

Travis from MN · 11-22-2007, 09:42 PM

Thats a hefty dose. Are you on Brand name or generic? That would be my first question for possible issues.

The second part, is Once a day may be the other potential issue, and going to BID (2x/day) may help keep the levels at a higher level without increasing dose... thats IF your doc says to do that . Remember, do not follow what we say as if we are dr's. YOUR DR is the one you need to talk to and ask questions to.

--Travis

loveslight57 · 11-27-2007, 09:44 AM

hi if your levels had been stable for a relatively long length of time and then suddenly dropped, it could be the dilantin. Have you sent them back to pzifer for testing?

In july I had a break through seizure. Before this my levels remained steady for many years on my therapeutic dose. But when tested after the event. the level was 1/3 to 1/2 lower than usual causing the breaktrough.
After changing lot numbers of parke davis dilantin, my level returned to normal. I sent the pills back in August and contacted the FDA. Pzifer at the time told me it would be 8 to 10 weeks for an answer. 4 monthes later they tell me it is still under investigation.
Is there any one else experiencing problems? If you have not changed anything in you lifestyle and are taking the meds as prescribed, I would suspect the meds.

TopamaxKillsMe · 11-27-2007, 10:06 AM

I was on Dilantin (generic) for 17 years. I took 400 every night. Suddenly the same thing that's happening to you started happening to me. I started getting seizures, frequent auras and my dosage wasn't working so my doctor checked my levels and they had dropped. She raised my dosage to 700mg. As a result, I started having the shakes, my gums were bleeding. I was told that for some people, dilantin can only work for so long and then it loses its effectiveness. That seemed to be what was happening to me so my neuro switched me to Topamax (a brutal experience) and now I'm on Keppra.

Dilantin was the best med I was ever on. It controlled my seizures and had minor side effects compared to topamax and Keppra.

loveslight57 · 11-29-2007, 03:24 PM

Quote:

Originally Posted by TopamaxKillsMe

I was on Dilantin (generic) for 17 years. I took 400 every night. Suddenly the same thing that's happening to you started happening to me. I started getting seizures, frequent auras and my dosage wasn't working so my doctor checked my levels and they had dropped. She raised my dosage to 700mg. As a result, I started having the shakes, my gums were bleeding. I was told that for some people, dilantin can only work for so long and then it loses its effectiveness. That seemed to be what was happening to me so my neuro switched me to Topamax (a brutal experience) and now I'm on Keppra.

Dilantin was the best med I was ever on. It controlled my seizures and had minor side effects compared to topamax and Keppra.

If you still have the dilantin that you were using at the time, send it to the manufacturer and the fda. If not, call the fda anyway and relay the info plus the lot number. Maybe if enough people do this it will get some results. hope you are feeling better.