dilantin toxicity

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Messages
18
Reaction score
0
Points
0
Has anyone ever had their dilantin go toxic in their system with no explanation my dads level shot up well over 40 for no reason
 
No, though when I was first put on Dilantin by the ER neurologist the dose was way too high. I was staggering and unbalanced, and my eyes would move rapidly back and forth. When I met with a different neuro, she saw what was going on and reduced my dose.

In your father's case there might be factors that would explain the jump, such as liver issues or metabolic problems. Is he on any other medications? Has his diet changed?

How recently had his Dilantin levels been checked before the spike? Maybe there was a gradual increase that went unnoticed until he went toxic. Is he still on Dilantin now? If so, his levels should be checked frequently and regularly to make sure they're staying where they need to be.
 
He had it checked in February this happened in April they checked his liver and kidney function are fine yes he is still on dilantin and is almost up to the dose he was on before and his level was 10.6 where as last week it waa 6.5 they are slowly increasing it to get it where it needs to be he is also on keppra to decrease the seizures while his dilantin was down
 
I was able to have seizure control on Dilantin with a low blood level (5), Everyone's different in that regard, but if your father has seizure control at the level he's at, he may not need to go much higher with his dose.
 
I've been on Dilantin for 40+ years. I had it get to toxic levels (43) and suffered many side effects until I stumbled upon a doctor who listened to me and talked with me rather than at me.

I was told that Dilantin levels increase (and decrease) at an exponential rate rather than geometrically. So seemingly all of a sudden I will start overdosing which physically feels as if I'm coming down with the flu - tired, dizzy, lack of coordination, etc. It may take me awhile to relate it to my Dilantin but when I do I get a blood test to verify Dilantin is the problem. I have a number of scripts from my doctor on hand so I can go immediately to a lab once I suspect a problem.

I keep a diary of my Dilantin levels, the dosage I was on at the time of each test, whether the level is high low or normal and any other info. I like to keep my level at 17 and having this info helps me know where I have been (my memory is horrid for this sort of stuff).

Interesting thing is that we have never been able to determine why the sudden increase in my Dilantin levels. But since I know about this and have learned to deal, I prefer to stay with it as it has my seizures under control.
 
I know this is a late reply!

Did any of you get hospitalised???? I am currently waiting on my blood test results and my neurologist said if it's any higher then 35 he will be admitting me
and I will have to undergo treatment.
 
I was on Dilantin for 34 years and I never went toxic once ever. Dilantin was the drug that wiped my memory clean but after I came of it my memory improved 90%
 
Last edited:
Well I take 460mg per day, I've never had any problems with it in the past two years I've been taking it until now. I'm just curious as it seems everyone else that has had the toxicity weren't hospitalised, my neurologist is talking of using charcoal if I am toxic
 
I was able to have seizure control on Dilantin with a low blood level (5), Everyone's different in that regard, but if your father has seizure control at the level he's at, he may not need to go much higher with his dose.

May I ask what dosage you took? I ask because my neuro has me on epilim, which makes me too ill to function properly, with supplemental phenytoin of 100mg. My epilepsy is fairly easy to treat but I do horribly with medications. If I could cut out the epilim, things would be far easier IF I can stay at 100mg phenytoin. I find that my doctors are never keen to try me on below what they love to call 'the therapeutic dose,' possibly because I am very prone to status. I would rather have a few of hospital visits than the side effects I've got now, though.
 
Back
Top Bottom