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Old 02-16-2005, 06:38 PM   #1
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Trileptal vs Dilantin

Hi, thanks for taking the time to read this.

A quick history... I have been on Dilantin for the past 15 years (28yrs old, M, married with two young sons) due to "mild" gran mal seizures about two per year.

I have recently started the transition from dilantin to TRILEPTAL (and am having a hard time with it: , , and sums it up! ).

According to my neurologist, trileptal has fewer of the side effects I have been suffering from (very strong wording, but they have really begun to affect my life). He loosely classifies it as "foggy head" (lack of concentration, loss of memory, confusion, "zoning out", fatigue no matter how much sleep I get possibly due to apnea, etc. etc.).

Even though I was on a reletively low dose, 300mg, the level of dilantin in my blood has always been on the high side, most recently 28.9 (should be between 10 and 20). That was reason, along with the symptoms mentioned above for the switch.

I am looking for info from anyone currently on trileptal, as to the side effects and severity they've experienced, BUT am especially interested in anyone who use to take dilantin and switched to Trileptal and any differences they've noticed between the two.

Anything would help. Thank you all

 
Old 02-17-2005, 08:00 AM   #2
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Re: Trileptal vs Dilantin

I was on Dilantin as a teenager for seizures. From 11 to 17, then because I had a normal EEG I was taken off. About four years ago (I am 42 now) I started having Partial Complex Seizures and my regular doctor put me on dilantin. The dilantin seemed to make it worse so she sent me to a neuro who told me dilantin was not for this type of epilepsy and he put me on trileptal. I was on the trileptal for two months when I started having trouble with my vision 2 neuro's assured me that it wasn't from the trileptal so I continued to take it. My vision eventually got better but my new neuro raised the dosage and I didn't tolerate it well. I was very tired and was having palpitations. He switched me to Lamictal and I am still on the second week of the sample kit that takes you up to a regular dose slowly.
Thw 2 neuro's who said that they didn't think the vision problems were from the trileptal, felt very strongly that trileptal was a very good drug. Since my vision cleared up I am not sure if it was the drug or not.

 
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Old 02-17-2005, 10:26 AM   #3
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Re: Trileptal vs Dilantin

Thank you tiresome.

I'm on the third of a four week plan to get off of dilantin and on to the Trileptal.

During the "weening" period, I was suppose to take 200mg of dilantin the first two wks, 100mg the last 2, but due to the high blood level, I have been taking 100mg for the last week and a half. I had been taking 1 Tri in the AM, and 1 in the PM, but this past sunday I increased the trileptal to two at night.
I have always taken the dilantin at night, so I am taking the Dilantin WITH the trileptal (neuro says it'll be no prob)

I have been very dizzy, especially in the morning (which has me nervous, b/c that kind of dizzies usually means a seizure is somewhere on the horizon), but on the bright side, I have stopped snoring at night (that's my wife and kids, not me!)

I'm not use to the dizzieness, and am not sure how to deal with it, what it's from, or how long it'll last.

Thanks

 
Old 02-18-2005, 10:02 AM   #4
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Re: Trileptal vs Dilantin

Trileptal vs. Dilantin..... Don't you love it when we have such wonderful choices? I started having grand mal seizures about 4 years ago, but the closest time span between them was about 2 1/2 months. My most recent came after 4 months of stability, but I think it may be that I'm finally on a med that's doing something for me (Dilantin). The first Med I tried was Dilantin, but I started having mouth irritation pretty quickly, so they took me off it. (It's pretty hard to tell if somethings working when you have to wait 3 months) Then depakote which did nothing (or at least nothing good), then Trileptal. I want to emphazise here that everybodys different, everybody has different reactions, everybody has different meds that help or harm. Now that the disclaimer has been put out there....Trileptal was the worst drug I have ever experienced. Not to mention the fact that it didn't work. I would take it, and almost get giddy off it. In a very strange way I would feel almost "high" off of it, then as the hours would go on I would go, as my friend who saw me put it, "down, down, down". While I was on this med I actually hit my head on a train. And yes, that was ME hitting the train, not the other way around. And no, the train was not moving. Once I ended up finally getting to the end of my "schedule" and having a seizure my friends and family were actually glad. They didn't want to have to see me on that stuff all my life. The strange part? I didn't mind the med. At least not until I stopped it and realized how much it was screwing with my head, how much I really didn't like it. That was the really scary part, that it was doing bad things to me, making me act differently and feel differntly, and I wasn't noticing. I have heard of people having success with this med, and I have heard of people having experiences much like mine or worse. The real problem is, If I couldn't tell that it was changing me until I stopped it, how do we know that it's not affecting the people it is working for who are still on it? Bottom line, I think it could help people and possibly not have these side effects, but you have to ask the people around you to watch out for you. Tell you if you are acting differently. One major concern I have about the Trileptal is low sodium levels. Once I finally had another seizure while on this they gave me all sorts of tests and found I had low sodium levels, a rare side effect of the Trileptal. I should point out that I had to badger a doctor into looking this up, as he wouldn't believe that this was caused by Trileptal. (it was) The sodium levels being lowered is said to be very rare, but as a doctor I talked to said "Who knows, we're not giving sodium level tests on many people, and the makers of Trileptal aren't telling us to" So I think I'll stop my book now and wish you the best. Remember, everybodys different, this could actually work for you. (I'm leaving my guess out of it) Good Luck! I'm here if you have more questions. I have definetly researched Trileptal. (More than my doctor!)

 
Old 02-21-2005, 07:57 PM   #5
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Re: Trileptal vs Dilantin

Thanks for the info Bingerbee.

The side effects I experienced from dilantin came on slowly, over the years, and like you said of your experience with trileptal, I didn't even notice them. People would point things out to me and mention the meds, but I would always say I felt fine. I am not one to put the blame on anything, and I felt blaming the dilantin was nothing but a crutch. I thought whatever they would mention was my problem.

Dilantin definately changed my personality and pretty much turned me from someone who was "sharp as a tack" into someone as dull as a bowling ball for lack of a better term .

My family had always been on my case about the Dilantin, always wanting me to talk to the neuro about getting off the stuff or switching, but I figured, hey, it's preventing seizures like it should, I'll just live with the side effects. Recently (over the past year) things have gotten much worse. I hadn't felt like myself in so long, I can't even remember feeling 'good' or 'normal'.

The forgetfullness has gotten me into so many arguments with my family (wife, parents)... half the time I'll forget to have done what they asked me, or I won't even remember being asked. I'll swear I did it,or they didn't ask me, AND I'LL FIGHT TOOTH AND NAIL WITH THEM ABOUT IT. 99% of the time I'll realize I forgot but won't admit it to them b/c it's embarrassing and I don't want to worry them. I now know that they see things in me that I can't can't.

I'll sometimes find myself confused to the point where the simplest of things, ex) getting the kids to school on time in the morning (and I know thats not an easy thing to do), becomes an unbelievable challenge. I'll literally get my son dressed and sit there for a second perplexed, asking myself "...what next, what next?" Those are but a few examples. It was becoming a bigger and bigger problem in my day to day life and i coudn't ignore it anymore.

I told my neuro what was going on, and he immediately suggested the change Tripleptal. He said that the side effects arent as severe as Dilantin, and there were only 2 major side effects to watch for:
1) an Itchy skin rash will break out in people allergic to it , and
2) it could lower the sodium level in my blood.
He said the lowering of sodium was the most common and he suggested taking blood tests to monitor it after I am completely off dilantin and on Trileptal.

Again thanks for the input, hope all works out! BTW, you mentioned you did a lot of research on Trileptal... please feel free to share any info you think is relevant.

Thanks

Last edited by chrevan; 02-21-2005 at 08:12 PM.

 
Old 02-26-2005, 06:32 PM   #6
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Re: Trileptal vs Dilantin

Hi Chevran

My experience with Trileptal wasn't great. I tried it after getting off Dilantin because of the gum problems it caused. It made me fall asleep at odd times, but far worse was the 'toxic epidermal necrosis', a rare side effect. The skin on the bottoms of my feet blistered, and I ended up with open sores that made walking extremely painful. I switched to Depakote, and my feet cleared magically... but then my hair started to fall out. Finally I tried Primidone, a form of phenobarbital that has been working fine for two years now. Finding the right drug can be a long, difficult process, but there's one out there that will work for you. Good luck!

 
Old 03-02-2005, 05:43 AM   #7
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Re: Trileptal vs Dilantin

Bingerbee, I'm switching from Dilantin to Trileptal because Dilantin is no longer working for me. I am still taking the Dilantin but I have experienced those "high" moments as well, especially in the mornings were it takes me a few hours to get over the "stumbling" moments. I feel drunk without the hangover. Of course, I thought Dilantin had some weird side effects at firat as well but those went away with time

 
Old 03-02-2005, 09:11 AM   #8
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Re: Trileptal vs Dilantin

I was on Dilantin for 37 years and i went to trileptol because my i couldnt think straight, remember anything. As i made the switch I started getting those abnormal feelings again and they were lasting a long long time. I switched back to dilantin on my own like a dummy and the levels were out of wack and I began to feel like i was gonna pass out (not seizure related) and i called the doctor and he told me to get off of the dilantin all together

I told him i might go into a seizure and he said that is the risk you need to take. so i weened myself off of dilantin and just took tegretol generic medicine which is carbamazepine. it is a medicine that when you taKE it , it gives out false blood levels. . The doctor told me that it works obly up to 4 hrs at a time and i was taking 3 200 mg pills twice a day so he put me on carbatrol and it has been successful ever since. I can remember, and dont forget things.

 
Old 03-02-2005, 11:30 PM   #9
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Re: Trileptal vs Dilantin

Currently on Trileptal, mild hair loss, short term memory becomes terrible, zones out during conversations, extreme anxiety and nervousness during nervous situations, and some Social Anxiety Disorder effect mixed in.

 
Old 03-03-2005, 04:37 AM   #10
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Re: Trileptal vs Dilantin

Quote:
Originally Posted by Hydroxpl
Currently on Trileptal, mild hair loss, short term memory becomes terrible, zones out during conversations, extreme anxiety and nervousness during nervous situations, and some Social Anxiety Disorder effect mixed in.
Really? I just started trileptal and was on Dilantin. My problems with Dilantin was anxiety, memory problems and in conversations when more than one person spoke I want to scream at them to shut up.

My Doc switch me to Trileptal for that reason. Ugh on the hair loss because my family tends to be brutal on men when it comes to hair

 
Old 03-03-2005, 10:00 AM   #11
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Re: Trileptal vs Dilantin

the only reason I have hair loss is because I shave it every 2 days, but that is because of the tegretol i used to be on

 
Old 03-06-2005, 08:05 AM   #12
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Unhappy Re: Trileptal vs Dilantin

hi everyone

after weeks of light-headedness, that increased from once a day to three or four times, that wooziness changed into dizziness last friday (3/4) and I had what the brilliant neuro called a "breakthrough seizure"

He said it was my body getting use to the trileptal. I was completely weaned off the dilantin the previous Sunday, but there was still a level 9 in my blood test. Have any of you heard of a "breakthrough seizure" before or is it just this guys way of covering his butt after he told me there was no increased chance of a seizure due to the switch?

Thanks

Last edited by chrevan; 03-06-2005 at 08:07 AM.

 
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