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Old 05-29-2008, 11:15 PM   #1
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Things that cause Dilantin levels to drop?

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

 
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Old 05-30-2008, 05:30 AM   #2
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Re: Things that cause Dilantin levels to drop?

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.

 
Old 05-30-2008, 08:12 AM   #3
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Re: Things that cause Dilantin levels to drop?

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

 
Old 05-30-2008, 08:48 AM   #4
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Re: Things that cause Dilantin levels to drop?

Quote:
Originally Posted by davehere View Post
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

 
Old 05-30-2008, 06:05 PM   #5
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Re: Things that cause Dilantin levels to drop?

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

 
Old 06-01-2008, 05:54 PM   #6
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Re: Things that cause Dilantin levels to drop?

Dave, I'd be very cautious on driving. If you are in an accident due to a seizure the state can hold that against you. This is a very serious issue. Even when the state knows and has approved for us to drive (letter from Dr.) they keep more of a watch on us then the average driver.

About the medications. I had issues when I moved and stayed with the same pharmacy line. They carried a different maker of generic than the previous location did of Tegretol and I had problems with it. My solution was to go back to the previous pharmacy (15 miles away!) being the local one could not change their supplier. With Dilantin, when I had level problems on generic, I was wondering why, and I opened the capsule and it was then I noticed it was a solid pill inside the capsule, not powder. I deduced that may be part of the problem. After 2 visits to the ER due to low levels my Doctor changed me over to Brand Name only of Dilantin (that was a while back).

When it comes to mediations and epilepsy, it's a STEEP learning climb. You have a lot of information to take in quickly. Some related to your case, other information related to medications and what you need to avoid in some cases, what may be considered "normal" side effects, when to call the doctor and so on.

I guess growing up on medications this has been normal for me. I started the research end the last 10-15 years when my medications started being changed for the first time. I'd read up on the new med so I knew what to avoid and not to panic if symptoms showed up that were "normal" with that medication.

Take the information as is, never EXPECT anything. You are only reading it to make yourself aware "just in case" symptoms show up. I've had Dr's place me on medications that people are not to be on at the same time and did not feel good. It was due to my reading up on the meds that I found the caution note that a person was never to be on them (the medications) at the same time. I was changed (the change failed) and they wanted to put me back on that prior mix. I had the warning in my hand and read it to him word for word. Needless to say I was not liked for being educated, but it helped. They tried a new med that I am still on today.

--Travis

 
Old 06-03-2008, 03:27 PM   #7
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Re: Things that cause Dilantin levels to drop?

Thanks for the feedback Travis.

It seriously bothers me that I grew up hearing "generic is the same as brand name" only to find out that this isn't always true. Between the pharmacies and the pharmaceutical companies it seems like downright lying to me but I suppose there isn't much we can do about it.

I'll continue to learn as much as I can about the medicines and my body. One thing I am certain of- I can tell when my Dilantin levels are low. I wake up before the alarm clock, think clearly, and have a ton of energy. A few things to sacrifice to avoid having seizures.

When you say the state keeps a closer eye on driving epileptics what do you mean? Have people been punished for causing accidents even after having doctor approval to drive?

I plan to make an appointment with a neurologist to discuss the driving since my doctor's response was "be careful" and "what did the hospital tell you?" The hospital didn't mention it and in the past I've never had one contact the proper authorities to revoke my license in the first place.

I searched this site for "epilepsy" and "driving" and found a post here that advised to "be careful." I am guessing this type of talk is aimed at those who have auras. I am convinced I do not have auras; I can clearly remember seconds before having my last seizure. The only way for me to "be careful" is to avoid driving completely. I assume at some point I will be permitted to again though; my last two seizures (over ten years) have occurred when my Dilantin level was low (the first time I ran out of medication and didn't realize that not taking it for two days could cause one).

Is it more likely for an Epileptic to have a seizure when Dilantin levels are dropping than when not medicated at all? Before taking medication I would have one at most every two years. Now it seems as soon as my levels are low I end up having one.

I do not like the idea of changing medication because the Dilantin seems to work for me. I feel that even after four years I would still be wondering about a new medication. I do plan to have my level checked much more often than once every six months from now on however.

Thanks for the feedback and thanks for listening to me rant as well. The therapeutic value of that alone is helpful when living in a world full of non-epileptics.

Dave

 
Old 06-04-2008, 03:04 AM   #8
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Re: Things that cause Dilantin levels to drop?

Dave, in reply to your question below

"When you say the state keeps a closer eye on driving epileptics what do you mean? Have people been punished for causing accidents even after having doctor approval to drive?"

When we filled out the license application, there is a question in most states "Have you EVER had a seizure" (checkbox) or worded similar to that. That is what flags us. If we DENY that knowing we have had seizures and the state finds out that we have, they can fine us or take away our license. If we are in an accident and look into our paperwork and find out we have medical (seizures) issues and it was not indicated on paperwork and it was known at the time we can be found at fault and taken to court for failing to admit it.

When I first applied for my license, I had been controlled for years, yet I admitted I had seizures. I had a documented past, surgery when I was a child, medicated ever since. Auto insurance was high the first 6 months then dropped closer to normal for me.

However YES if drivers that are epileptic/diabetic DENY they have such conditions (if they have had seizures) they can be in deep trouble with the state for filing a false document.

I had to have a 12 month review by my Neurologist to maintain my license (paper submitted to the state). After I had a seizure and went 6 months seizure free, license was reinstated, they (the state) went every 6 months. The average driver does not need to submit their annual physical to the state saying they are safe to drive. So YES there is some differences in how we are treated. However it is for the safety of other drivers.

I don't expect to be able to drive again sadly. I wish I still had the aura's before my seizures so I had the warnings. I have not been able to go 12 months seizure free. It's 6 months here, but if I can't keep them controlled for a year why bother to get the license back if I'll just lose it again due to one seizure every 3 or 4 months usually (it's gotten better).

--Travis

 
Old 06-06-2008, 08:12 PM   #9
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Re: Things that cause Dilantin levels to drop?

Thanks for the detailed response, I see what you mean. Sorry to hear your seizures occur so frequently and are not controlled Travis.

After meeting with a neurologist he made sure to make it clear to me that MI law requires no driving for six months. I'm planning on moving so I won't have a commute to work anymore. My wife can not drive me for that long and I don't think I'd feel safe making the drive myself anymore regardless.

My Dilantin level made it up to 31 at 400mg/day. Neurologist and physician both said to stay on the generic. I'm eager for my level to come down, I've had a heck of a time concentrating, remembering, and waking up. Now I am trying 100mg in the morning and 200mg in the evening. By taking the large dose at night will that keep my level higher during the day?

Dave

 
Old 06-06-2008, 08:40 PM   #10
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Re: Things that cause Dilantin levels to drop?

From my past on Dilantin it sounds how they had me. Higher PM dose then AM. Not really. Your "overall" level will hold (the Dilantin "free level" if I recall) after about 6 days on the new lower dose. Long time since I had to deal with Dilantin! Most doctors run the standard levels, the free levels SOME feel are more accurate (mine did)...He ran both to be sure.

The level 31 is HIGH. I remember the symptoms... vision, balance effected. I even had to buy a cane! I couldn't read during that time. I had to transfer a book on tape (tape!) over to my MP3 player to listen to it. The text was dancing on the page even with only one eye open. TV was even out for an option.

Almost always in my past when I had a higher dose it was in the PM dose. I would GUESS it is due to the fact we take it a few hours before bed, so even IF it makes us toxic, we will sleep through the "peak" level period of the medication (and not be bothered by it). When we wake up, we take the AM dose and it maintains the level in our systems the Doctors see fit.

Overall the level becomes an "average" with the exceptions of (you have to look at every med for the time frame) the "peak" period of the medication, often 1-3 hours after ingestion. If our levels are already on the high side we will notice the "peak bumps". If we are having that happen and it is a problem we should let the doctor know.

I had that issue with Tegretol when I was told to take it 3x/day. I had a 15-20 minute window to take the midday dose or I'd be toxic for a few hours. I'd be on peak for about 1 hour then it would fade. If I was off the time window it was 2-3 hours. Needless to say that regiment did NOT work well with me (she had me at 2200mg!).

--Travis

 
Old 06-25-2008, 11:08 AM   #11
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Re: Things that cause Dilantin levels to drop?

Not only do I wish that the manufacturer of generic Dilantin could be sued, I wish that the insurance companies could be persuaded to cover the brand name version.

I know that on the brand name my blood level sits at 12.5 while on the generic the level drops to 7.0 or less.

As for things that can cause your particular level to drop, my suspicion is that different batches of generic Dilantin contain varying amounts of the drug.

 
Old 07-02-2008, 09:22 AM   #12
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Re: Things that cause Dilantin levels to drop?

Hi all,
I know I'm late to the discussion, but I hope someone will respond here. My husband is on Dilantin and has been switched to generic in the past year. The info they gave us said it is the exact same medication as the brand name. They said there is absolutely no difference, but still had him take a blood test. His level was at 8, which was low but they still said okay, that was a year ago. He had his levels tested again a couple weeks ago and it was 5.3. The doctor said he wasn't even covered at that level, so he upped to 500mg one night then 400mg the next (was taking 400mg every night). We didn't think it could be the generic since they said it was the same, but it sounds like it can be. Scary.

So what do you do if your insurance doesn't cover the generic, do you pay full price? Also, my husbands neurologist wants to change his meds because his liver count is 81, so he will likely be switching off generic Dilantin to something else, so how long should he go without driving? He works 48 miles away but is switching his schedule so he can carpool with someone who lives nearby.

 
Old 07-15-2008, 11:34 AM   #13
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Re: Things that cause Dilantin levels to drop?

Sorry for the late response to your question regarding what we do since insurance doesn't cover the brand name. Personally, I pay the difference between what my insurance covers and the cost of the brand name.

One would think that since our neurologists know that there is a difference they would lobby the insurance companies for us.

 
Old 07-15-2008, 02:31 PM   #14
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Re: Things that cause Dilantin levels to drop?

To the new question. There IS a difference between generic and brand name.

If the person is having problems with generic and maintaining levels all it takes to get around insurance cost saving is the doctor writing Do Not Substitute on the script and you will only be given brand name. The coverage can't change the doctors order.

At that high of a dose to maintain levels on generic we (patients/posters) don't know. It's possible the body has developed a tolerance to it (the medication). It is hard to say weather or not brand name would work at a lower dose or not. It's pure SPECULATION at this point until a person would change over to find out.. (shrug).

--Travis

 
Old 07-16-2008, 08:43 AM   #15
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Re: Things that cause Dilantin levels to drop?

Unfortunately, despite the fact that my neurologist indicates specifically that the brand name should be dispensed with no generic substitute, my insurance does not have the brand name Dilantin on its formulary and will only cover the generic cost. I suspect that other insurance companies do the same.

 
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