Possible Dilantin toxicity?

I am 60 and was diagnosed with complex partial seizures when I was 42.  An MRI at that time showed an old brain injury in the left temporal lobe (probably due to a car accident when I was 18).  At the time of diagnosis, I was starting to go through menopause.  It took some time to become stable on Dilantin (generic) at 450 mg and I had a testing level of about 12-14 for years.

Since last August I have had two surgeries, including a total hysterectomy. In October 2008 my Dilantin level was 19.9.

In January 2009, I was diagnosed as severely deficient in Vitamin D (D2 was less than 4; D3 was 8).  

In February 2008, I started having some "spells" that weren't quite seizures but did feel like I was going to faint but I didn't.  I felt like the bottom just totally dropped out of my energy and it happened quickly. I would have several of these a week.  Since then, I have had a new MRI (normal), and MRA (slightly enlarged -- 2mm -- left artery), and an EEG.  While I was having the EEG, I had one of these spells.  I told the technician at the time that this is what I was talking about.  The neurologist said the episode on the EEG showed I fell asleep.  He refused to order a new Dilantin level check.  He said if I wasn't having seizures, I was within range and did an eye movement test and said I wasn't toxic.  

I have been on the generic Dilantin for years rather than the name brand.  I was taking 400 mg one night and 500 mg the next night for an average of 450 mg.  

My nurse practitioner ordered another Dilantin level check when I had another spell at their offices.  My blood level was 17 at that time and I had taken 200 mg that morning.  At my third appointment my neurologist put me on the name brand Dilantin and reduced the dosage to 400 mg.  I am finally starting to feel better by degrees.

My questions:  
1. Could I have become toxic on the generic Dilantin even though I was within range?
2.  Some of the information I have looked at on the internet shows ranges as high as 40-50.  It was my understanding that a level of 10-20 is preferred.  What is correct?
3.  Could the lack of estrogen or Vitamin D have contributed to what was going on?  If so, how?

Thank you so much.

[KixNgo]

your lack of vitamin D can cause extreme fatigue.. I am 44, and have been on dilantin name brand, the generic didnt work, for about 11yrs as adult and was on it for 5 yrs as a child(my stepmom took me off of it thinking i didnt need it). but my new neuro is weaning me off dilantin to keppraXR, because i was having what felt like chest seizures, awake the whole time, but would experience severe pain in my chest, that would start off subtile and peak at about 20-30 min after start, was told this was side affect of being on dilantin for too long, i supose its possible the vitamin D deficiency could have added to your problems, Dilantin does deplete vitamin D as well as vitamin B's.  I take D supplements b/c i'm allergic to dairy, as well as I am on Blood thinners, so i cannot eat greens hardly at all.. so getting my D's isnt always the easiest.

[brainpain]

hi poppy, i have been taking dilantin for about 20yrs. my level stayed constant and never had problems. when the generic came out i took thosen within 1 week i started getting lite headed and feel like i was going to pass out. i had a grandmal seizure within 2 weeks of taking the generics. my neuro said the generic dident have every thing the name brand has. i cant take generics only name brand. my level was so low on the generics . i honestly believe the generics are useless. i do take 400mg dilantin every nite before bedtime and have for about 5yrs.

[poppy1949]

Thanks for the feedback . . .  this is useful.  

Currently I have to fight with my insurance company to get them to cover the name brand Dilantin -- it's not on their formulary.  I'm also wondering if I should be switched to a different drug.  

After it was determined that I was so deficient in Vitamin D, I was put on a massage dose of 50,000 units per week for eight weeks to get my level up.  Could that be toxic as well?  Does anyone have experience with that?

Poppy

[poppy1949]

Oops!  So much for checking spelling.  That should be a "massive dose" -- not "massage dose."  

[kylooker]

I've been told also that prolonged use of Dilantin to control seizures will effect the Cerebellum - No ones told how severe - But a Nuerologist has strongly suggested I get off it and use another anti-convulsant - I've been seizere free since I was 14 and I'm now 52 and am very reluctant to start all over again - Any help would be greatly appreciated - They say the Cerebellum may shrink and one thing that is effected is balance what else I don't know?