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Old 01-22-2005, 02:32 PM   #1
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Uncontrollable/Elevated Dilantin Levels

Wondering if anyone has ever had a problem controlling their dilantin levels? For the past month or so my levels have been up and down and I'm not taking any more/less than what I've been told to (I take 600 mg per day - 300 in the a.m. & 300 in the p.m.).

A few weeks ago I was at a toxic level of 30 (therapeutic being 10-20) and my doctor called & told me not take any dilantin for 3 days. Got my level drawn again and it had dropped to 25.6, had it drawn again a week later and it was at 20. A week later it climbed back up to 26.8 and last night I had my blood drawn and it's over 30 again. The doctor called last night and now I'm not supposed to take any until Monday and then go get my levels drawn again.

I feel like I'm drunk when my level is so high and am always tired. I've been on dilantin for 12 years and have never had this problem before. Additionally, I've recently been told I'm severely anemic (wonder if there's any correlation?). Can anyone offer any advice??? HELP, I'M AT A LOSS ~ THANK YOU!!!

 
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Old 01-24-2005, 10:42 AM   #2
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Re: Uncontrollable/Elevated Dilantin Levels

I too have had major problems with dilantin and keeping the levels steady. Especially when I was taking the generic phenytoin. Contrary to what people say, they are NOT equal, and many neuros will tell you the same thing. I had been on a dose of 600 a day for 3 months, no prob, then suddenly became toxic with level up at 32. They thought I had tried to overdose. Oh my. Same thing happened with Tegretol about a year ago, but med just needed adjusted, so no harm done. My levels tend to go up very quickly, and drop very quickly. If I miss two doses, I'm below theraputic, and I'm having seizures, if we don't watch levels close, get to high and I'm having them. It gets so frustrating. Dilantin is a tough drug for me to regulate because level needs to be between 16-20 roughly to keep me sz free in combination with the other two meds I'm on. Also, drinking alot of milk, especially within about an hour of taking Dilantin either before or after can interefere with it's absorbtion. Also, sometimes combined with other meds can make things tough because they may lower one drug, and raise the other. I'm sorry you are having such a tough time, hang in there, and God bless.
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Old 01-25-2005, 11:25 PM   #3
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Re: Uncontrollable/Elevated Dilantin Levels

600/day is a very high dose of Dilantin for anybody.

My levels were at 25 when I was taking 350/day and problems came up (I usually held 16).

I'd reduce my dose rather than not taking it personally; talk to your Dr about that. By not taking any you are having peaks and troughs and throwing your body for a loop with the drugs half life. You want to maintain a consistant level in your system not shock it by sudden levels of the drug.

Not taking any is a huge risk unless you just came out of the ER and had recieved a IV overdose of your drug. (bad memories of 2100mg of Dilantin IV in the hospital ER)

--Travis

 
Old 01-26-2005, 04:29 AM   #4
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Re: Uncontrollable/Elevated Dilantin Levels

THANKS EVERYONE FOR YOUR FEEDBACK! Actually, my level from Friday came back at 31.7 so I didn't take any all weekend (per the doctor). He called me Monday a.m. and cut me back to 400mg/day and increased my Lamictal to 150mg 2x/day. He said that dilantin is a rather unpredictable drug and would like to get me off of it if possible (that's why he's upping the Lamictal). He said that the slightest increase/decrease in dosage can cause the levels to go up/down exponentially.

I too thought that 600mg/day was high considering I'm 5'2" and weigh 130 lbs. (when I weighed 300 lbs. I didn't take that much!). You should've seen me when they had me on 800mg/day after I had my last seizure (12/16) when my level had dropped to 5.6 ~ SCARY! I was at the mall Christmas shopping w/my step-daughters and tried on a pair of jeans and literally fell over in the dressing room. Then, when the escalator came to an end I tripped and fell. Talk about not being able to focus and feeling drunk all the time?! EY!

Anyway, I find the statement from "mandiyew" about the generic version of dilantin (phenytoin) interesting. I get my medication through my insurance co's mail-order program and that's exactly what they send! Perhaps I need to talk to the doctor about NOT checking the box that says "generic is OK".

Again, thanks for everyone's feedback ~ I greatly appreciate it.

 
Old 01-26-2005, 12:03 PM   #5
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Re: Uncontrollable/Elevated Dilantin Levels

For others on here; there's a HUGE truth about level problems on generic dilantin.

My HMO tried force switching me and seizures were starting left and right, blood levels were not where they had been. If you inspect the generic dilantin, the capsul has a SOLID PILL inside, not powder as the REAL Dilantin Kapseals do.

Make sure your Doc writes or checks do not substitute on ANY of your meds or the pharmacy will provide generics to cut costs.

They tried to substitute TegXR with regular Teg once on me and I threw the bottle back at the pharmacy staff's face, telling them to read with their glasses on!! They claimed because it was not checked they could replace it. I left the bottle on site and refused to give my signiture. I had backups for 2 weeks, and went to the hospital the NeXT day to get the issue resolved (I DID take the drug reciept to prove the error at the pharmacy).

--Travis

 
Old 01-27-2005, 06:45 AM   #6
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Re: Uncontrollable/Elevated Dilantin Levels

SuzyQ - Generic phenytoin and Dilantin are NOT the same thing no matter what your medical insurance tries to sell you on. Your neuro needs to write "dispense as written" when he prescribes Dilantin. On the generic my levels are at 5.6 and on Dilantin my levels are 12.2.

 
Old 01-30-2005, 05:10 AM   #7
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Re: Uncontrollable/Elevated Dilantin Levels

Thanks again everyone ~ appreciate your insight.

I will MOST CERTAINLY be talking to my neuro about this ASAP. A week ago Friday my level escalated to 31.7, this past Monday he cut me back to 400 mg/day and on Friday night I went and had my levels drawn and now it's down to 8.8!

I am TERRIFIED that I'm going to have a seizure ~ this is insane that they can't figure out what's going on. This not driving business is for the birds and is getting to be a major inconvenience. I feel like I've lost all my independence...

P.S. to Travis -- My husband did just inspect the Phenytoin and you're absolutely right...it is a capsule inside, not powder like regular Dilantin!!! Isn't Dilantin supposed to be "time released"? Wondering if maybe that's what the problem/difference is between the two.

 
Old 01-30-2005, 05:28 PM   #8
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Re: Uncontrollable/Elevated Dilantin Levels

The "Kapseal" (brandname dilantin term) makes it time release. If it disloves in the stomach it may cause stomach irritation and almost immediate entry into the body (bloodstream). The idea is for it to disolve past the stomach and seep into the system that way and avoid irritation.

Good luck on getting the brand name. The cost is *not* that much different between generic and brand name for Dilantin. It is an old drug. I don't know why they put up a fuss over the costs. When I was changed back to brand name I leveled out and my seizure became much more controlled.

A lot of the times the stores/insurers will tell you it's the same. They see it as the same, they are not on it, and just care about costs. It may contain the same amount of ACTIVE drug, but the inert ingredients, bonding ingredients are different. THATS where the problems arise often. Not to mention the form of how Dilantin/Pheytoin is presented. The same is true for the majority of generics. It's the inactive contents that differ. It may contain the drug itself, but it's the "other contents" that people show reactions to.

I did when I switched from one generic of Teg (tablet) to another generic of Teg when I moved. I had a major reaction as if it was not even effective. Same pharmacy chain, 12 miles away from my old one. I ended up going back to the old location so I could keep getting the previous generic that worked with me.

(now people understand why I read up on my medications!) <grin>

--Travis

 
Old 02-04-2005, 02:26 AM   #9
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Re: Uncontrollable/Elevated Dilantin Levels

I'm new to posting here. I have intractable epilepsy, generalized and TLEs. The only AED I can tolerate is Dilantin which has left me in a real fix.

I managed to keep my levels around 17-20 for the first 3 years I took 300 mg of Dilantin. Then for unknown reasons my levels jumped to 24-25, but my sz's seemed a little bit less too. So I had no intervention. But THEN in the last 2 years my levels have been just crazy. A year ago I was admitted in a status sz probably caused by my level of 52. I was told I shouldn't be able to live with it that high. BUT my highest level so far has been 62 and I wasn't really aware of things. I don't think I was sz'ing, but I sure wasn't all the way conscious. I use a pill minder so I know I wasn't taking more than I should and that's all still on the same dose I've always taken - 300 mg.

My epileptologist played around and curently I'm finally under 20 by taking 200 mg alternating every other day with 300 mg. One thing that still bothers me though is that I take the trade name by Parke Davis which is supposed to be extend tab but when in the hospital they drew Dilantin throughout a 24 hour period and my levels were anything but sustained. I was all over the scale. I talked to a pharamacist with my doctor and he recommended I cut my twice a day doses into three times a day. I have yet to see what that's doing to my levels but I feel I'm sz'ing less.

However I called Parke-Davis to discuss these huge booming levels with them and they informred me that they were now recommending Dilantin for ONLY short term use. I've known a person whose been on this for 40 years! The reason why I'm concerned is because I've developed peripheral neuropathy in both of my feet which is basically a condition where the nerves are dying in my feet, a condition I need to get stopped, pancreatitis which can be a terminal condition if not treated and I'm shooting liver enzymes. All attributable to Dilantin. I don't know if it's because I was toxic on it for 2 years. Is long term use 6 years? I don't know. I also don't know what else I can take. I've tried nearly everything and the side effects were horrible.

Anyway this thread was certainly interesting to me. I thought I was the only one with this very odd problem. And also yes, what others posted don't ever go back and forth between the trade and generic. I was given generic once in the hospital and that made me extremely sick. It seemed to me it wasn't even the same medication. Several times in different hospitals they've tried to give me the generic. You'd think pharmacists would be more aware of the danger of that.

Stormey

 
Old 02-04-2005, 04:41 AM   #10
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Re: Uncontrollable/Elevated Dilantin Levels

Thank you for the post. I have NEVER heard of using Dilantin for short term use only. A lot of people I have typed with have been on it for over 10-20 years.

I was only on it for 8 years until they took me off it. In that time I had problems with it, the HMO changing me to generics (until I forced them to give me brand name after problems), it did damage to my teeth, which now I have no idea what to do about the damage that happened.

The levels you suffered scare me. Those levels are shocking. It almost sounds as if you and the other poster started to have a "buildup" of the drug in your system. Thats just a thought that has no basis from any medical material I have seen.

300mg/day is a Standard starting dose... in some cases they need to increase the dose to achieve proper blood levels. Very strange.

--Travis

 
Old 02-04-2005, 09:49 AM   #11
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Re: Uncontrollable/Elevated Dilantin Levels

Stormey - thanks for posting! Gotta hand it to you - I never would have thought to call Parke-Davis.

Interesting that they've said that Dilantin should only be used short term. It's the drug that neuros start with and if you have success with it you're on it for years. Like Travis said, some people on this board have never been on anything else.

Sounds like you have a responsive neuro who is actively involved. Best of luck to you.

Last edited by Art_930; 02-04-2005 at 09:50 AM.

 
Old 02-09-2005, 10:29 PM   #12
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Re: Uncontrollable/Elevated Dilantin Levels

Stormy, You mentioned you were seeing an Epileptologist. Is he/she at a Comprehensive Epilepsy Center? Since you are still on Dilantin and are still intractible seems like an Epileptologist would have suggested other options to you since they are the only ones who really can offer other options. A general neurologist is not the same as an Epileptologist by a long shot. Has he mentioned the VNS or suggested surgery? Does the Dilantin stop you seizures completely? That was my first med I was put on back in the 60's. It is one of the oldest drugs for seizures. Have you tried the newer meds? Phoebe

 
Old 02-28-2005, 06:01 AM   #13
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Re: Uncontrollable/Elevated Dilantin Levels

Hello All - Sorry it's taken me awhile to get back here. To answer some questions:
Phoebe: yes my epileptologist is at a comprehensive epileptology center and since I wrote that post I have been to a different one because we have recently moved. I'm intractable officially because I am intolerant to any other AEDs except Keppra which doesn't help me at all. Both centers had specialized pharmacists that are currently trying to come up with combinations of drugs and modalities so I can get off of Dilantin. Dilantin was the first I was on and it controlled my sz's for 5 months, along with Klonopin, which I still take, now at high doses (2 mg 3x/day) for jerks. I was put on a quinolone antibiotic which tends to significantly reduce the effectivness of Dilantin, which it did in me, and I haven't been controlled since that time. That was about 5 1/2 years ago. I went through about 2 years of miserable AED trials, one after the other. The side effects were like a literal living nightmare. I wound back up on Dilantin, actually I think I never ever got completely off of it at any time, but I'm not sure. I was a zombie for a large part of that 2 year period of AED trials. There is an axiom that if you try 3 AEDs and they don't work then it's senseless to try more. I'm not sure if that means taking 3 at once, or 3 AEDs at any time, regarding intractability. I know the recommendation or maybe The Rule, is not to be on more than 3 at a time. Once this crazy neurologist I started out with had me on FIVE AEDs at once but in smaller doses but talk about being pulled from the North to the South Pole! What in the WORLD was he thinking? That's when I headed out to an epileptologist. I have tried 11 AEDs that I can remember, that number might be higher and couldn't take any of them due to severe and intolerable side effects except for keppra which did absolutely nothing for me. I kept trying to remember to ask the specialized pharmacist for epileptics at the last center I was an inpatient a few weeks ago a better definition of the 3 AED axiom, and forgot.

Since I wrote last I've been on IV antibiotics, in the hospital for pancreatitus attributable to Dilantin, this is the third time now I've had that in 3 years, and right now I'm going to a liver specialist because my enzymes are now over 700, which is in the "severe" range. Also attributable, tentatively, to Dilantin. I need a liver biopsy to ascertain exactly what is wrong with my liver but several epileptologists I worked with in the new center feel I should assume it's Dilantin. I was told Dilantin doesn't attack everyone's liver, pancreas or feet, like it has mine, but it does some, they feel it has mine, and frankly I'm really sick right now with liver enzymes that high, thus my absence from here too. I'm also finding out that there is no "magic bullet" for liver problems either Avoidance of what is causing liver disease, if that's possible, they feel will be my recommendation, so we're all scrambling right now trying to find what I can take and why my enzymes are so high. There are other reasons liver enzymes are shooting that high such as alcoholism (I don't drink but as an example), chronic hepatitus, some kind of bone disease, many things but my first liver consult so far was long, comprehensive and they feel it's probably attributable to Dilantin and even though I didn't ask, I had the feeling this very comprehensive liver center, approved for liver transplants which is a hard certification to get so I feel I'm going to a good place, has seen other Dilantin patients with liver disease.

So far? Whenever my Dilantin is slowly started to be reduced? I have a status seizure, even when hospitalized with IV sedation. Obviously I sz very easily though too. I'm a "little" freaked out about this whole picture but we're all still working on it. I was given a rest for a few weeks to try and regain some more strength, continue to see the liver specialists I'm scheduled with, and have more liver function studies and a liver biopsy.

I'm not a candidate for either surgery or the VNS, both centers feel. I've had a severe head injury with subsequent scarring from clustering drops, years ago, surgery following that 3x. No one is to anxious to cut into my head again and I have to be honest, I don't know if emotionally I could go through the surgery most likely to help me and that's splitting of the hemispheres. What is being suggested to me as something we should all talk about is a work up to see if grid placement is feasible. I'm a little hazy on this but in general grid placement is to kill the cells that have a special name I can never remember, something like epileptogenic cells I think, that can be or are maybe(?) the focus or excitor, maybe, of at least my TLE's. But my generalized sz's are the ones that are my primary problem so I don't know if I'm up for grid placement. It's pretty invasive. I've already done enough of the "invasive" thing. I'll also say, may unpopularly, but I've followed some people that have had lobectomies and I haven't been real impressed with their results. I'd like to see some statistics on how much seizure reduction, which is how it is billed, not a "cure" but "seizure reduction" is expected, how many people get off AEDs but most, and this is what the people I've known or talked with I have seen, many people have a lobectomy that seems to work for awhile, and then these people have started sz'ing again. I've read a lot of posts of people who got the VNS who had good results at the start too, who also started sz'ing later. My epileptologist isn't impressed with the VNS and rarely, if maybe ever, is using it now. I'm not sure. I'm not a candidate for it he told me. One woman had her lobectomy at Rush Institute in Chicago, considered an excellent center and her epilepsy changed from one kind to another after her lobectomy. I do think the success of a lobectomy though from all that I've heard is a very careful work up to see who is a good candidate and a wise neurosurgeon won't operate on anyone that isn't a very good candidate. For me? It would be the surgery called Corpus C - something, splitting of the hemispheres, for generalized epilepsy. That is not frequently done at all. It gives me the total willies. There was a man at the last center, where I was just an inpatient, who had this surgery several years before. I was told he had normal intelligence then but his hemispheres were split too far down, and it's left him significantly developmentally delayed appearing. I asked if that is unusual and I felt like I got a lot of pass off answers but maybe that was because they were protecting his privacy in ways too. It's a surgery that's done in two stages. The THREE people I know that have had that done? Didn't do well at all after surgery. Surely someone does well after it, but I haven't talked to them yet.

This is a strange thing maybe to say and I need to ask the epilepsy pharmacist I've met about all this but my dog has epilepsy and she's controlled on pheno and sodium bromide. Sodium bromide was added when phenobarbitol wasn't enough. I don't think, but don't know, if it goes by any other name in the human world, but don't think so. Which makes me wonder why it works for canines. Guess you can see I'm getting rather desperate - LOL.

The center I've been in the past few weeks has one of the better reputations nationally and I have no complaints. However the center and doctor I went to before know me so well, have been through a lot with me so when I go back in the hospital to give this another try to get off Dilantin and onto probably now a combination of things including modalities such as accupuncture which if done right we've found out controls my absences for about 5 days, I'm going to go back to my old epileptologist who I have a huge amount of trust in and who seems to keep me involved more in my treatment plan and knows my touchy reactions to these medications too better than anyone.

When I was going through all of these AED trials I had several factors. One was I was seeing a neurologist that later I found out isn't too devoted to neurology but more the ski area I lived in for ice climbing and that is simply the truth. HE told me that. At the same time I was seeing an internist. Their little deal was the neurologist would decide my treatment, all with the assumption I'd be flipped on some pills, they'd control me, the internist then would just keep prescribing and monitoring me I guess. That worked for the 5 months I was controlled until the stupid internist put me on a quinolone antibiotic, cancelling out the Dilantin, throwing me out of control since then, but when I went out of control I was still seeing both of them, which is my fault but also a symptom of how mindless I was on other AEDs, and on Lamictal, which the neurologist placed me on multiple times determined it was going to work. My internist had at the same time, with no communication between the two I later found out, put me on Zoloft. I had such a severe reaction really never seen in Lamactal that the epilepsy pharmacists are wondering if it might have been that the Zoloft and Lamactal had an interaction. I think that could be true. I'm up for trying it again. I'm no longer on Zoloft. Also when I was on one of the many Lamactil trials I was given a headache medication after a seizure for 2 weeks that has a mild barbiturate in it and the two of them had a gigantic, really unexplained reaction it's now thought, and I was hospitalized for two weeks because of it. So? What is my "virgin" brain on Lamactil? We don't know. Sorry if I'm misspelling that. BUT I was also on Dilantin in decreasing doses I do know going up on Lamictal, so did those two interact? My Dilantin levels were almost not detectable so it was thought at the time, they were not interacting.

(too long - to be continued in next post)

Last edited by Stormey; 02-28-2005 at 06:31 AM.

 
Old 02-28-2005, 06:04 AM   #14
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Re: Uncontrollable/Elevated Dilantin Levels

Continued from above -

It's becoming disheartening to be giving something my all, and nothing good YET is happening. I'm really afraid to ask the question and it hasn't been posed to me - what if nothing else CAN be found because I'm telling you - I'm terrified of taking Dilantin now. I think the damn drug is killing me. Can't live with it and can't live with it it seems.

Intractable due to inability to take the AEDs is one of two of the reasons for intractable, officially listed. I'm actually assuming that would be my diagnosis but on all the other AED trials I had I did get to therapeutic limits on all of them, miserably, and my sz'ing didn't stop. On some of the AED trials I've had my sz'ing INCREASED.

However with these new liver problems, continuing to also work with Parke Davis, there are no questions being asked, I do have to get off of Dilantin. The problem is - and then do what? I'm pretty unnerved about all of this.

The pharmacist I've been working with on an inpatient basis told me that Dilantin was the second drug developed for epilepsy and 1 of 2 for many years. Phenobarbitol was the first.

there is a new drug coming out, no one seemed to know when but I wasn't encouraged to think it was going to be that much different to what is already on the market.

Thanks for your responses.

Stormey

Last edited by Stormey; 02-28-2005 at 06:33 AM.

 
Old 11-28-2007, 04:47 PM   #15
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Re: Uncontrollable/Elevated Dilantin Levels

Hi All,

I am so glad to read that others are having trouble regulating their Dilantin levels. This is the second time in a month that mine has bottomed out and I have begun having sz's again. I am on 600 mg., trying to get the level up and keep it up. It seems that when I take antibiotics, my level bottoms out. Today it was 6.2. Way too low!

I really didn't know that their was such a big difference in generic phenytoin and Dilantin!

FYI.....beware of your levels taking any antibiotic, especially a drug like Cipro or even pennicillin. I have bottomed out on both.

Pam

 
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