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Old 11-22-2007, 04:22 PM   #1
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Lee1672 HB User
Dilantin levels

I take 550 mg of dilantin a day every am @9:00 for awhile my levels run where they are supposed to then like I have had 3 breakthrough siezures in the last ten days because my level is down to 7. I get plenty of sleep, no stress, eating right so my question is, is there a vitamin or mineral level that would deplete my level all of a sudden like that

 
Old 11-22-2007, 08:42 PM   #2
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Travis from MN HB UserTravis from MN HB UserTravis from MN HB User
Re: Dilantin levels

Thats a hefty dose. Are you on Brand name or generic? That would be my first question for possible issues.

The second part, is Once a day may be the other potential issue, and going to BID (2x/day) may help keep the levels at a higher level without increasing dose... thats IF your doc says to do that . Remember, do not follow what we say as if we are dr's. YOUR DR is the one you need to talk to and ask questions to.

--Travis

 
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Old 11-27-2007, 08:44 AM   #3
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Re: Dilantin levels

hi if your levels had been stable for a relatively long length of time and then suddenly dropped, it could be the dilantin. Have you sent them back to pzifer for testing?

In july I had a break through seizure. Before this my levels remained steady for many years on my therapeutic dose. But when tested after the event. the level was 1/3 to 1/2 lower than usual causing the breaktrough.
After changing lot numbers of parke davis dilantin, my level returned to normal. I sent the pills back in August and contacted the FDA. Pzifer at the time told me it would be 8 to 10 weeks for an answer. 4 monthes later they tell me it is still under investigation.
Is there any one else experiencing problems? If you have not changed anything in you lifestyle and are taking the meds as prescribed, I would suspect the meds.

 
Old 11-27-2007, 09:06 AM   #4
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Re: Dilantin levels

I was on Dilantin (generic) for 17 years. I took 400 every night. Suddenly the same thing that's happening to you started happening to me. I started getting seizures, frequent auras and my dosage wasn't working so my doctor checked my levels and they had dropped. She raised my dosage to 700mg. As a result, I started having the shakes, my gums were bleeding. I was told that for some people, dilantin can only work for so long and then it loses its effectiveness. That seemed to be what was happening to me so my neuro switched me to Topamax (a brutal experience) and now I'm on Keppra.

Dilantin was the best med I was ever on. It controlled my seizures and had minor side effects compared to topamax and Keppra.

 
Old 11-29-2007, 02:24 PM   #5
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Re: Dilantin levels

Quote:
Originally Posted by TopamaxKillsMe View Post
I was on Dilantin (generic) for 17 years. I took 400 every night. Suddenly the same thing that's happening to you started happening to me. I started getting seizures, frequent auras and my dosage wasn't working so my doctor checked my levels and they had dropped. She raised my dosage to 700mg. As a result, I started having the shakes, my gums were bleeding. I was told that for some people, dilantin can only work for so long and then it loses its effectiveness. That seemed to be what was happening to me so my neuro switched me to Topamax (a brutal experience) and now I'm on Keppra.

Dilantin was the best med I was ever on. It controlled my seizures and had minor side effects compared to topamax and Keppra.
If you still have the dilantin that you were using at the time, send it to the manufacturer and the fda. If not, call the fda anyway and relay the info plus the lot number. Maybe if enough people do this it will get some results. hope you are feeling better.

Last edited by loveslight57; 11-29-2007 at 02:24 PM.

 
Old 11-29-2007, 02:28 PM   #6
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loveslight57 HB User
Re: Dilantin levels

Quote:
Originally Posted by Lee1672 View Post
I take 550 mg of dilantin a day every am @9:00 for awhile my levels run where they are supposed to then like I have had 3 breakthrough siezures in the last ten days because my level is down to 7. I get plenty of sleep, no stress, eating right so my question is, is there a vitamin or mineral level that would deplete my level all of a sudden like that
Send the dilantin back to the manufacturer for testing and pleasecontact the fda.
It seems that I am reading more and more of these problems. If your are compliant with your meds there is no reason for the sudden drop.
The company should be accountable. hope you are feeling better

 
Old 11-30-2007, 01:05 PM   #7
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Re: Dilantin levels

Hi-has anyone experienced vision changes since taking Dilantin? I've been taking dilantin for 2 1/2 years(due to brain tumor), and since have not driven. Neuro claims the drugs ARE NOT affecting my vision. Opthomologist yesterday claims it could be the meds. Had levels checked 4 months ago. Am taking 200mg/morning, 200mg at night. Does this sound familiar?

 
Old 11-30-2007, 05:03 PM   #8
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Re: Dilantin levels

Hello. This is my 1st post and the right topic since it relates.

I have been taking generic Dilantin for over a year now and have not had any problems since my 1st and only grand. I didnt have any before, until a motorcycle wreck a year before the grand so I am able to know what is wrong since it is different from my previous norm. I have noticed posts similar to my dosage like the 400-500+ mg per day and having little, if any, problems. I have seen some that think it strange to take 400+ mg a day but, that just enforces the seriousness when some think it humorous to state it is odd. Because you take less than 400mg may mean that you are very lucky. I truthfully envy you. From what I have been told, most siezures come from an electrolite imbalance in the mind. Some have a greater imbalance. Like many others and myself.
Before the wreck, I ran, I swam, I played football, I road a bicycle, I practiced kung fu, and it really irritates some people when others state that the dose is odd, so please dont. Like I said, I envy you.

Back on the topic. I had taken the meds for a year and have had little doctor/tests since the beginning because I have shown good results. Nothing arose until I asked the doctor and was approved to take the full 500 in 1 dose a few hours before I went to bed at night. Since then I noticed small twitching in bed, staring in deep thought, and uneasyness, with the recent being me waking up on the ground beside my bed 1 time. I changed the dose back to 200 morning 100 afternoon and 200 night without my doctors permission. Nothing so far. It may be the manner inwhich you take your dose. You make talk to your doctor about that, for all the people who take 400+ mg, but try to remember that doctors can only give advice because most of what they know is only theory when it comes to the brain. I have noticed some blurring in vision but I take the generic so I do not think it is the meds.
Hope this has helped.

Good luck to you all.

 
Old 12-21-2007, 11:12 AM   #9
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sztoomuch HB User
Re: Dilantin levels

Only 550mg?
Well, I have had some issues with Dilantin. I was dxed in junior high school, first drugs were Dilantin/Phenobarbital
There was at least one refill of the brand name that caused me problems. I had been sz free until a particular refill, then had grand mal sz. I was in high school at the time. My dad took the refill back to pharmacy and to make a long story short, they gave him a different refill. Then, it worked fine.
Much later, after college, I was switched over to generic Dilantin. Had a breakthrough sz within a week. Same thing...but pharmacist told us to see dr. first. Well, it appeared that generic Dilantin at the same dosage level did not deliver as much Dilantin to my blood. So we upped the dosage.
Since then I have been tried on :
Neurontin
Zarontin
Tegretol
Mysoline
"Valproic Acid" (I was in a study on that one...didnt do well)
...to name a few.

I am still on Dilantin. Same dose. Thing is, for me, the dose that works puts my blood level over the 'accepted' normal blood level for dilantin. So a new doctor will cut my dose. Then I have a breakthrough sz. The dose then goes up.

All of the Neurologists I have had (4 so far) have said that it doesn't matter when I take the dose -- as long as I don't miss a dose. For me, 2 in the AM, 2 in the PM (that is 800 mg total!), as close to 12 hours apart as I can get it, with food (not just a snack). My only real side-effect is my gums.
No vision changes.
For many years (25) I have been sz free (until just lately). I drove, swam, played baseball...no problem.

 
Old 01-03-2008, 06:08 PM   #10
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gary33 HB User
Re: Dilantin levels

Hi,
I thought I would post this another place to make sure folks saw it. Two points I would like to bring up as I had been on dilantin for 40 years and began to have symptoms identical to those observed for MS. Optical neuritis, double vision, poor balance, issues swallowing, muscle control in general was poor, memory loss...I even had issues walking. Turns out another person reported almost identical symptoms on the internet and he ended up having issues walking. I never found out how he did after getting off it.

It turns out a few things of importance I found out

1) There are scientific literature articles which demonstrate if you take aspirin you can elevate your dilantin levels, becasue aspirin binds competitively to a protein responsible for removal of dilantin from the bloodstream. I once took three aspirin to alleviate some of the MS symptoms I was experiencing, well the symptoms got worse...becasue they turned out to be related to elevated dilantin levels not MS.

2) The effects seem for me largely REVERSIBLE, once off dilantin my eyesight came back, I have regained essentially all my balance, and no other issues with walking and muscle control. My memory came back, I dream more and began to dream in color. I feel ALOT better after getting off of Dilantin and onto Keppra, As to whether my siezures will be controlled is another issue which so far so good.

Hope this helps. The point being if you stay on dilantin it will make your life a living hell and at the same time cure your siezures, it will give you the equivalent of MS. With all the other meds out there I am hoping that there is more than one solution. I have another post here which may also be of help: search gary 33.

 
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