how often should a person on dilantin get blood levels checked?

3-6 months I'd say. 3 if you are unstable and having adjustments. 6 months (or more?) if your levels are stable (seizures controlled) and don't tend to change.

My new doc (I'm not on Dilantin; have not been for years) goes more by how YOU (as in the patient) feels then the numbers of the blood test. I'm sure he'd react if the results came back very low. However the way he explained it to me (first time I heard this mindset) "the range is a GUIDE and we can go above or below those numbers and still be safe".

YES I knew that, but I'd rather pay attention to where my levels sit then suddenly feel toxic or have a rapid onset of seizures due to a drop in medication and not "feeling" the symptoms beforehand.

--Travis

Travis,
My son is on pheytoin and the neuro is making adjustments to lower his dosage (he said it was too high at 20) and I was concerned because his levels were low when he had a breakthrough seizure 1 1/2 years ago and I don't want any more episodes to occur. Thank you kindly for your helpful reply. Good luck to you and to all on this message board because I empathize with what you are all going through with your situations. The doctors are not always so compassionate because they are not going through it, but I bet they would change their tune if they had a seizure disorder themselves or if they had a loved one who had to live with it. Thanks again.
Ann M

Up to you if you want to reply; I share a lot having seizures since I was a kid. :)

I would ask your son if he felt any problems (toxic) at all when the levels were at 20. The range is 10-20, but again, some patients are above 20 and ARE FINE being above 20. The main issue is how the patient "feels". Medication has side effects that only the person taking the medication can describe. Sometimes the side effects are minimal.

If he feels fine when the dose came back with the level of 20 and was not impaired, did not show slurred speech, impaired hand eye, any vision issues; issues with irritated stomach (the generics did that with me)... I'd say it's up to the three of you (parent, child and doctor) to decide what to do.


They DO have a 30mg Kapseal (pink ring) of Dilantin rather than dropping with the 100 or the disgusting 50mg chewable triangle tab (I hated that flavor).

I can try and describe for your benefit what it was like when my previous doc (over 10 years ago) had me on a very high dose of Tegretol 3x/day. If I didn't space it properly (too soon or too late) I had about a small 60 minute window to take my noon dose and maintain the levels in my system without experiencing a "drunk like" symptom.

Thats the best way to explain how the drops and peaks of Tegretol felt to me when they had me on 2200mg/day. Needless to say the noon dose did not last very long with all the complications and not feeling normal.

Different meds act differently. Thats just an example of being able to recognize the symptoms the medication caused me.

Very high doses of Dilantin (administered by IV at the hospital) caused me to be sensitive to :light and sound. The standard room lights were as if I was on a stage. I had them put on the night settings and draw the curtain. That helped my eyes. They closed the door all but an inch and it still sounded loud. After I left the hospital and was sent back by cab; Balance was still off from the medication megadose, but my mind was clear in thought. I slept the IV drip off for 4 hours and was fine after that.

Sorry I rattled on,

--Travis

Hi!, See my opther post on dilantin, aspirin and MS....search gary 33. Aspirin can elevate dilantin levels.

Dilantin levels should be checked regularly. How often depends on whether or not meds are being changed. From what I have seen, it is a highly individual thing. Some need checking only once a year, and are well under control. Others need it very often (as much as weekly) if there are control problems and/or medication is being adjusted.

I am one of those that has been on Dilantin for years. My levels are above the toxic range (between 30 and 35), and I am able to operate fine. I drove for 35 years at this level. Currently, as my neuro is changing meds, I have to have levels checked more frequently, especially in ER visits. Since my 'normal' level is so high, though, I have to be checked once every six months, along with testing to see how my liver is doing.

If there have been any liver problems, that changes things. From what I understand, Dilantin can damage the liver. Mine was damaged when I was in college (was a subject in testing a new anti-seizure drug :dizzy:...controlled seizures, but damaged liver :mad:). So, I have to be quite careful. That may be another reason why my testing for Dilantin levels is more frequent.