Dilantin & sleep issues - Epilepsy Message Board

Ann67 · 02-10-2004, 08:42 PM

This is my first time posting to this board. I have had grand mal seizures since 1997 and have been through numerous medications. I am now on Dilantin 700 mg. a day and have been for the last 3 or so years. My blood level is only 9.5 even on 700 mg. Ever since starting Dilantin I have had trouble with staying asleep and it seems to be getting worse as time goes by. I have no trouble with falling asleep (in fact, can do that just about anytime of the day); my trouble is with staying asleep. It doesn't matter how long I've been up, how tired I am, etc., after around 4 hours of sleep, I am wide awake, but of course am needing more sleep in only 6 or 7 hours. I used to be able to make it through 6 hours of sleep, but it has been decreasing to the point I am exhausted, am not getting any deep sleep, and am at my wit's end as to what to do because I don't have many options left as far as medications. My primary has been working with me with medications to help the sleep, but they are not working. So I will be heading back to my neuro sometime soon and am just trying to see if this is an unusual side effect or if anybody has any advice for me before I go in and talk about what next.

Thanks for any input.

Art_930 · 02-11-2004, 05:54 AM

Welcome to the board, Ann!

I can relate - I'm on Dilantin, 300mg, blood level around 8. I take the Dilantin at 8pm every night, and fall asleep the minute my head hits the pillow - usually around 8:30 (thank heaven for vcr's, so I can tape my favourite shows). I sleep soundly while I'm asleep, but get up a couple of times in the next five hours, then I'm awake and ready to go.

So that's two of us - any more?

Rebecca2 · 02-11-2004, 07:10 PM

Hi,
I ad been on Dilantin for a while about 3 years ago- then switched to Depakote and Topamax, now I am on Keppra- I really don't remember specifics of how I sleep, but I really felt weird on Dilantin- It made my gums hurt, and my throat felt swollen all the time- eventually I broke out in a rashso I had to go off it. Most seizure meds make me very sleepy, and I end up taking naps- then I have trouble sleeping through the night. Do you need naps? Sometimes my naps can go 2 hours- so I have trouble at night, but I just can't make it the whole day... I hear power napping (10 minustes) is the way to reenergize and feel better, though I have never been able to do it...
-Becca

Ann67 · 02-12-2004, 06:36 PM

Thanks for the replies. Yes, I do nap, but I have gone weeks without naps when I was filling in at work and still did not get the sleep I needed and by the end of a couple weeks was a wreck. So I guess it is time to perhaps search for another drug or a combination of drugs. It is just so tough switching meds or even adding a med. Oh, well, we all do what we have to do.

Krista2882 · 02-13-2004, 07:23 PM

Quote:

Originally Posted by Ann67

This is my first time posting to this board. I have had grand mal seizures since 1997 and have been through numerous medications. I am now on Dilantin 700 mg. a day and have been for the last 3 or so years. My blood level is only 9.5 even on 700 mg. Ever since starting Dilantin I have had trouble with staying asleep and it seems to be getting worse as time goes by. I have no trouble with falling asleep (in fact, can do that just about anytime of the day); my trouble is with staying asleep. It doesn't matter how long I've been up, how tired I am, etc., after around 4 hours of sleep, I am wide awake, but of course am needing more sleep in only 6 or 7 hours. I used to be able to make it through 6 hours of sleep, but it has been decreasing to the point I am exhausted, am not getting any deep sleep, and am at my wit's end as to what to do because I don't have many options left as far as medications. My primary has been working with me with medications to help the sleep, but they are not working. So I will be heading back to my neuro sometime soon and am just trying to see if this is an unusual side effect or if anybody has any advice for me before I go in and talk about what next.

Thanks for any input.

hi! I just posted almost this same thing to someone else, but when I was on Dilantin, I had a lot of trouble sleeping. I had nightmares, and panic attacks during the night. Now I've been on Tegretol and Keppra for a couple of years, and I sleep fine ever since I've been off of the Dilantin.