Dilantin Levels - Epilepsy Message Board

bgcg2001 · 08-01-2007, 11:20 AM

Hi i am new here but i need to just vent for a little bit. I have been on dilantin for almost 6 years now and till the present i have had ok luck with it. But the last month it doesnt want to stay in my system, i have had 3 blood checks in the last month and my count as been none existant. I take my medicines religiously and my wife even gets them laid out for me. I take 400mg in the morning and 400 mg in the evening. My last three counts have been anywhere from 2 - all the way down to just .6. My doc refuses to change my medicine and even made me take my pills to another pharmacy and have them count them and check to make sure they were the right pills. Which they were. I am getting really upset because i feel like they essentially saying i am lying to them and not taking my pills, when that is the furthest from the truth. I know what happens when i dont take my meds and i dont enjoy having seizures so i take it religously. They basically told me that there is no possible way that my count should be that low and the pharmacy and the doc decided to take me off name brand dilantin and switch me to the generic. I dont know what difference they think that will make because arent they basically the exact thing??? i am just so confused and so depressed right now. I dont like being made feel like i am crazy. And thats exactly how the doc is making me feel. I mean i even heard the pharmacy that he sent me to asking the docs nurse if they had talked to my wife to make sure i was taking them. and he asked her that with me standing right there by him! how do they think that makes me feel?? I am guessing with all the people that take the drug dilantin that i am not the only person that has their level drop. if you have any suggestions let me know. Thanks for letting me vent.

Travis from MN · 08-01-2007, 02:30 PM

800/day and your levels were at 2; now reading 0.6!!! YIKES! Dilantin levels "recomended range" is 10-20. For some it's lower, others higher. Much of a reason for concern.

Generic in my case caused irratic levels, lower than normal. caused seizures. caused me to visit the ER a few times and get pumped up with dilantin by IV.

I'd HIGHLY suggest sticking with brand name ONLY if your Doc is keeping you on that medication. It DOES make a difference!!! By The Way, Dr's DO have to follow your (the patients) requests, even if they don't like it. If you so desire, ask your Dr to write out a script for Dilantin saying "Do Not Substitute". That way you will get brand name only if you wish to.

One generic I was on of Dilantin/Phenytoin was one side of the capsul was white, the other was purple (lavender?). The generic had a SOLID PILL inside, not powder like brand name Dilantin's Kapseal. (for a reference)

--Travis

Travis from MN · 08-02-2007, 11:22 PM

I should add this on.

The opposite end of dilantin levels, toxic side (too high of levels). Effects can be sensitivity to light and sound, balance, "drunk like" effects.

I had those when the hospital pumped me with a megadose by IV. The hospital ambient noise sounded like it was on an amplifer, the lights acted like there were spotlights my eyes were very sensitive. The "night" lighting setting seemed "normal" to my eyes. Take into account They pumped me up with over 2000mg by IV in about an hour and I only took 350mg/DAY.

Mental effects (thinking) were clear and did not seem to be inhibited as it can be with other medications.

Finding out the sideFX of meds is not something we care to, but having been there done that Im more than happy to inform and NOT have others go through the same I did.

On a different occation, due to body weight loss (caused by a medication that didn't work for me) it shot Dilantin up to 25 (blood test) I think it was. About 8 above my normal reading. My balance was shot, blury vision/double vision, I had to walk with a CANE or lean on the walls my balance was non existant. Dropping the 50mg after checking levels took away the problems (Dr's orders). Also the new med that didn't work out had been removed and I gained back the weight lost; took a few months.
Substantial weight drop was the cause of that toxicity.

--Travis

SentenceDoing · 08-03-2007, 07:35 AM

Quote:

the doc decided to take me off name brand dilantin and switch me to the generic. I dont know what difference they think that will make because arent they basically the exact thing???

No, they're actually not the same thing. When I was on Dilantin, they first put me on the generic, and my blood levels were nonexistant. So my doctior switched me to the brand name, because he said the amount of actual meds (or the concentration, or something like that) in generic vs. brand name is usually different. The brand name was a little better, but he couldn't get the levels in my blood where he wanted them to be, so I switched to Tegretol and then eventually added Keppra.

I say, if your doc doesn't believe you, switch to a new doctor. I'm pretty sure it's possible for your body to sometimes build an immunity to certain meds after a certain amount of time (like what happens with antibiotics or pain relievers), which is what may have happened, and you need to have your meds changed.

neurowreck · 08-03-2007, 09:31 AM

Yeah, you have to have a doc who believes you. Generics of dilantin are usually not recommended (not sure why they even make them- even I, on SSD and no prescription coverage- wouldn't buy the generic- I'd go without something else first, if I was on Dilantin). I can imagine the frustration of knowing you're taking what's prescribed and having messed up levels. Is it your PCP or neuro who's doubting you? Whoever it is, I'd tell them that their lack of trust is sending you elsewhere, since YOU know you're taking what's been prescribed. I'd be upset, also.