Things that cause Dilantin levels to drop? - Epilepsy Message Board

davehere · 05-30-2008, 12:15 AM

Hi,

I've been taking Dilantin for about 10 years.

Four years ago I moved and my new pharmacy began giving me generic Dilantin. After about a month my levels were quite high, I had double-vision, I could not walk straight, and 12-16 hrs a day.

My doctor cut my dose to 250 mg (200 mg one day, 300 mg the next). Since then my levels were fine. Six months ago my level was 17.

A few days ago I had a tonic-clonic seizure and after being admitted to the ER my level was found to be 3.5. My doctor now has me taking 400 mg a day.

I've read about the difference in generic and real Dilantin but am not sure if switching from generic back to the real stuff is the best decision at this point, especially given that I've been on the generic for about four years. Let me know what you think.

I'm trying to think of what might have caused my Dilantin level to drop so seriously. Here are a few things that have changed in my life. Let me know if you have seen your levels change when doing any of them:

1. About six months ago I stopped drinking Diet Coke (contains Aspartame). Until then I drank almost nothing else and went through 40 oz to 60 oz of the soda every day. I have been drinking a great deal of water since- almost nothing else. At least six to eight glasses a day. I am thinking this could have seriously effected my Dilantin levels but I am only guessing here.

2. I started injecting myself with B12 once a month about a year ago. Over the last six months I have not missed a single injection whereas before then I may have missed one now and then. I first complained to my doctor about a numb feeling in my feet (necrosis?) and he determined my B12 was very low (anemia?).

3. In the days before my having the seizure my Dilantin intake occurred at differing times. I usually take it at 11 AM but since I had been on vacation for five days there were times when it was taken six or so hours late.

Any feedback would be great. Thanks,

Dave

SentenceDoing · 05-30-2008, 06:30 AM

All of those could be reasons, but number 3 is the one that really sets off the alarms in my head. Taking your meds up to 6(!!!) hours late can definitely cause your levels to go kind of wacko.

And just to share my experience, I took Dilantin as my first anti-seizure med, but they gave me the generic one... it didn't show up at all in my blood tests, even when increasing the dosage, so the doctor made sure the pharmacy gave me the name brand. So the fact that it's the generic could also have something to do with it.

davehere · 05-30-2008, 09:12 AM

Wow, six hours can make that much of a difference eh? I guess I'll make sure to be much more diligent about taking it on time.

Over the last week I have been having a difficult time waking up (hitting snooze buttons on several alarm clocks for at least an hour) and my mind has been rather fuzzy. Between just not thinking as fast, making small mistakes, and not talking as easily, I definitely notice a difference with my Dilantin levels being up there.

Over the last several months I was waking up easily and felt great- something that I never did very well even before taking Dilantin. I thought my body and biological clock were just changing. Now I believe my Dilantin levels were just low- either that or they are extremely high right now but I have not suffered dizziness or double-sighted vision the last few days. I'm eager to see results of a new test next week.

I'm not keen of the idea of switching drugs since for a period of time I am not going to know if the new drug works. Even before I started taking Dilantin I only had a seizure once every few years so if I switch drugs I wouldn't feel safe driving (or standing for that matter) for years to come.

Dave

Travis from MN · 05-30-2008, 09:48 AM

Quote:

Originally Posted by davehere

Hi,

I've been taking Dilantin for about 10 years.

Four years ago I moved and my new pharmacy began giving me generic Dilantin. After about a month my levels were quite high, I had double-vision, I could not walk straight, and 12-16 hrs a day.

My doctor cut my dose to 250 mg (200 mg one day, 300 mg the next). Since then my levels were fine. Six months ago my level was 17.

A few days ago I had a tonic-clonic seizure and after being admitted to the ER my level was found to be 3.5. My doctor now has me taking 400 mg a day.

I've read about the difference in generic and real Dilantin but am not sure if switching from generic back to the real stuff is the best decision at this point, especially given that I've been on the generic for about four years. Let me know what you think.

Any feedback would be great. Thanks,

Dave

Generic's content at times seems to fall within a percent (give or take X %). I had issues with generic Dilantin when I was on it, and my levels showed it. I was switched back to brand name and the issues went away.

from a patients view 3.5 is dangerously low of a level, while the 17 looks high, but within the satisfactory as long as you do not have problems at that dose back then.

The other thing to look at is where your levels HISTORICALLY have come out at. They TEND to be about the same time after time. I would sit around 16 for my Dilantin. I know my Tegretol sits at 8.2. KNOW what is "normal" for you and your lab test results. Knowing this helps you when you see the results you know if you are on the high or low side; and KNOW the range (Dilantin is 10-20 for "acceptable") of the med.

If Dilantin has been working I'd say try to stick it out a little longer. Just watch the time spaced between doses. Don't stretch it or you will allow the medication to drop before you take the NeXT dose. The idea is to maintain a constant level and avoid the mountains (peaks) or valleys (drops) of medication levels in our systems.

--Travis

davehere · 05-30-2008, 07:05 PM

Thanks for the replies all.

I usually take my medication at the same time day after day and the fact that I was getting by on such a small amount of sleep for several months has me believing there was more to my level drop than the recent activity over my vacation. I plan to watch my dose times closer regardless- no need for added confusion!

I will talk to my doctor and pharmacist about switching back to non-generic Dilantin. I do not have a neurologist but will be finding myself one soon.

My doctor told me to "be careful driving" and when I told him my wife was driving me an hour to and from work each day this week he said I should keep that up for at least another month or two. It's hard on her and we've been talking about moving closer to where I work.

I've always told myself if I had another seizure that I would stop driving but seeing that my Dilantin level was so low I feel hesitant about making that commitment. I surely want to wait until the level is stable, especially after reading more about unstable levels on here.

On a different topic... Are there any possibilities of a class action lawsuit against the company that manufactures the generic Dilantin? I'm not looking to get rich here but clearly there is something different about it and this is a serious, life and death situation. It took me long enough to take my epilepsy seriously and become responsible myself; now I have to deal with the irresponsibility of pharmaceutical companies? Granted, I'm not sure if the generic had anything to do with my latest episode but I'm convinced it did with the previous one.

Dave