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  #1  
Old 01-14-2010, 01:22 PM
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Angry Alternatives to Dilantin?


Hi.

BRIEF BACKGROUND:
I have temporal lobe epilepsy and get simple & complex partials. Every once in a great while, they generalize.

Was on Dilantin (actually Phenytoin) for a few years then Keppra was added. Was on both for about two years at which point I tried coming off the Phenytoin. Had a seizure that generalized and went back on the Phenytoin but at a lower dosage. This was all under the supervision of my neurologist.

I didn't have any problems with Keppra per se, but eventually it became obvious it affected my moods. My temper was on a hair-trigger and suffered from periodic depression. I came off the Keppra in November and was completely off by the first week of December.

Had a seizure the other day that generalized and I blacked out. Not going to go into detail about that here right now but let's just say the results were catastrophic (no one was hurt, thank God).

LET ME GET TO THE POINT...
I'm starting to think maybe the Dilantin isn't really working for me to begin with because I've always continued to experience auras and simples. But my neurologist says that Dilantin won't prevent simples/partials but will stop them from generalizing. Has anyone else heard this?

I'm going today to get a level checked. If my level is low, then that could explain what happened the other day but what if it's NOT low? I've looked into other drugs but the side effects appear horrible. So many people seem to be on Lamictal and my neurologist has mentioned it before but all I hear about is the side effects... especially in this forum. Are people getting their seizures under control from Lamictal? Are people getting control with Dilantin? Could my problems be because I'm on phenytoin and not brand-name Dilantin? Is there any evidence its more effective than Dilantin in stopping and/or preventing simple/partial seizures?

I'm SO ANGRY right now I can't even think straight. I have been 100% independent up until now---been driving, etc---but since the other day my wife has been driving me to work.

I'm just looking for suggestions. Thank you.

FRUSTRATED & DEPRESSED,
Mo
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Old 01-14-2010, 05:10 PM
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Hi Moses, welcome to CWE!

I've been on both Dilantin and Lamictal (in both cases the brand version, not the generic). I had total seizure control with the Dilantin; I only switched off of it because my neurologist was worried about possible long-term effects on my gums and bones. I now have total seizure control with Lamictal. Yes, there are side effects (occasional blurry vision; weight gain), but they are tolerable.

In general, if you're at all sensitive to changes in blood serum levels of your anti-epileptic drug, then the generics can be risky, because they vary in strength from manufacturer to manufacturer and from batch to batch. So it's possible that the generic played a role in your seizure. There could be other factors at play as well -- many things lower seizure threshold, like stress, alcohol, infections. In addition, some people's seizures change as they age, and changing metabolisms can also affect how meds are absorbed.

I realize you're off Keppra now, but for future reference, some folks have been able to combat the moodiness and "Kepprage" by taking Vitamin B6 supplements.

Best,
Nakamova
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Old 01-14-2010, 07:07 PM
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Thank you for responding. Total seizure control sounds like a pipe dream right now.
I just got back from having blood drawn. What a brute! I've got a nice bruise on my arm thanks to the tech who took my blood. Oh well.

Thanks,
Mo
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Old 01-14-2010, 09:29 PM
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Moses,

It sounds like you are in the same boat I am. I have been on Phenytoin from the start and a few months ago I started some Keppra also. I think mine are called simple & complex partials now. Every once in a great while mine will generalize. Before the Keppra I had one spell a day maybe go two days. Keppra works best when I take at least 750mg a day.
I can get really mad fast on it. ( people are talking to me and i just bump my head, **** it leave me alone..)


400mg Phenytoin in the morning and 400mg at night- I take also

I would like to take something else. hopefully it may be cheaper.
I'm working on finding a good neurologist to go see. I found one that will read an EEG for me but, What good is an EEG .. Have not found a good answer to that one..
My Epilepsy seems to be rare.. My brain works so hard to fight misfires..

OO ... and I will point out if you have not got it by now very few can understand my posts...
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Old 01-15-2010, 07:40 AM
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Hey RC,

I understand your post just fine... not sure what that means for me though.

Anyway, yeah, the Keppra definitely had a mood-altering effect that got worse as time went by. If it was supposed to reduce the frequency of my seizures, then it didn't work for me, because to the best of my knowledge I was still getting simples as frequently with it as I was without it. Up until now, I've just shrugged off these minor seizures and thought I could live with them. But now I realize that every seizure I have has the potential to generalize, and for that reason, I no longer want to just disregard them and live with it.

I'm currently on 500 mgs of Phenytoin/day: 300mg in the AM, 200mg in the PM. If my neurologist says I can increase the dosage to 600 or 700mg/day, then I'm going to try that. If that doesn't work, then I guess I need to try something else like Lamictal.

RC, are you currently employed? Do you drive?

Thanks for sharing,
Mo
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Old 01-15-2010, 09:10 AM
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Welcome Moses, I've been on Lamictal for years now. It's a potent medication so a doctor should start you on small dosage. It works for Bi-Polar Disorder as well as for Epilepsy, so it serves as a double duty medication. I find it to be a very good med, warding off my seizures. WARNING: If you're on too high a dozage it can cause episodes.

I don't know why you're on Dilantin. It's a very old med and there has to be some alternatives for Dilantin.

Here is a link for alternative medications. You'll just have to scroll down a bit.

you.http://epilepsy.emedtv.com/dilantin/...ernatives.html
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Old 01-15-2010, 11:10 AM
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Mo,
I am glad you understand..
Your post helped me the same as mine was meant for you and others reading. My post was to help you get more comfortable and that there are people on this site that can understand your situation. Never 100% But, ya know....

I do work....
I also drive, It may not be recommended tho. (As so often that it is not)
I am 25 and this all started around 18 years old.
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Old 01-15-2010, 11:11 AM
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This might get a little long, but I think I have some good experience to share with you.

I have had secondarily generalized tonic-clonics for 28 years. I have been on dilantin ever since. I would get auras (simple partials) on a regular basis with the occasional breakthrough tonic-clonic. Up until 6 years ago, I was working with just a family doctor who had the opinion that it was OK to have the auras.

Then 6 years ago, after a tonic clonic where I hurt my ribs, the ER doctor got me referred to a good neurologist. This neurologist stated right up front that the auras were seizures and our goal was to be seizure free. What a change in attitude. He made two changes.

1. He added Keppra which really seemed to help out. I have not had any tonic clonic seizures in the last 6 years (though I have had some pretty bad auras that were on the brink of a tonic clonic). My auras are much less than what they used to be and the ones I have I think are usually due to unusual triggers or missed doses.

Thus, I can't really answer the question about dilantin treating simples and complex, but I have always had the impression they did.

2. He also switched me from the better known brand Dilantin to another brand of phenytoin called PHENYTEK. Phenytek is a time released form and has fewer peaks and valleys of blodd levels. Same phenytoin, just better time release. I still take this at 500 mg / day.


Keppra worked well for me until a little over a year ago. Yes, it always had side effects including the mood issues, but I tolerated those. Later though, I started having more and more concentration/focus issues and last February I slowly went off Keppra and onto Lamictal.

I have had good luck with Lamictal. I have gained some weight, but I don't think it is due to the drug. My moods still swing some, but I am generally more alert. I would not be afraid to try Lamictal.


I understand the driving frustration, but try to see it this way. If you can get your meds in balance, you should be able to get back to driving. Many with E cannever even get that chance. I am not saying you shouldn't be mad or upset, I was last year when I couldn't drive. But it helped knowing that I would be driving again and now I am with no problems.


Best of luck to you.
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Old 01-15-2010, 11:51 AM
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Hey BUckeyeFAN,
" don't won to forget FAN at the end "

THak You.

I am just with a family doctor.. I still get auras (simple partials) on a regular basis with the occasional breakthrough tonic-clonic. That is the a description for me also.
What is the price of this PHENYTEK?
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Old 01-15-2010, 04:24 PM
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Hey RC, I hope you can get to a neurologist. Don't know anyone in here that has done better with only a GP. Epilepsy is just too complicated for a GP and the good ones will admit that.

Phenytek is not cheap when compared to generic phenytoin. However, phenytoin is one of the worse generics out there. Few people have consistent control with the generics. IMO, I would avoid the generics. My doctor won't let me take them.

Phenytek vs brand Dilantin? I don't know which is cheaper. I have OK insurance, but pay $270 every three months because they don't want me to have the brand name. Luckily I can afford it.

Good Luck
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Old 01-15-2010, 11:46 PM
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Moses, please pay attention to the length of time as well as the quantity of dilantin you must take. Please consult with your neurologist about this if you are on dilantin for any great length of time. I believe that there is something posted about dilantin on this site here, but I stand to be corrected.

From my experience (40 yrs.+ on dilanitn), it's not wise to be on a Rx for such an extended length of time, especially when there are other more effective Rx with fewer side effects attributed to them. If you notice something unusual, please consult your pharmacist first and ask him/her to give you further information. If there isn't any mention made of the problems you're experiencing with dilantin, it could be that it hasn't been mentioned in the pharmacopoeia yet. By that I mean this: as a result of an OD by the dr. which was substantiated by blood work results, I have more severe tinnitis (ringing in the ear) and some very unstable balance. Even though there wasn't any mention of this in the pharmacopoeia, what I was experiencing was so abnormal for me that I knew that something was wrong with me. You also have to play an active role in your own health so that you can live as full a life as possible.
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Old 01-18-2010, 10:22 AM
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Thanks to all who've responded. It helps (a little) to know others who are dealing with the same issues.

I expect to hear from my neurologist this week with the results of the blood work. I decided that if my level is low, i'm going to ask to either increase the dosage, switch to the brand name or both. If my level is fine, then I'm going to try another med, maybe lamictal considering how he had mentioned it in the past as an alternative.

For the record, I've been on phenytoin for about 7 or so years (I was officially diagnosed with E in '99 but was on tegretol for a very short while). In that time, I've had 3 seizures that have generalized, including the one last week, with one of the others attributed to an attempt to come off phenytoin to use Keppra as monotherapy back in the summer of '06.

But I (we; my wife and I that is) just got some news this weekend that makes it all the more important that I try my best to get a better handle on this. I think you folks can figure out what that news is.

Thank you for your posts,
Mo
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Old 01-18-2010, 10:30 AM
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Congratulations!


Best Wishes to you and your wife Moses.

You are right, you have a great reason to feel better now.
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Old 01-18-2010, 08:33 PM
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Congrats Moses! I wish you and your wife the best of health
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Old 01-22-2010, 07:50 AM
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I got my phenytoin level back yesterday. It was 14 (range 10-20). Neurologist says taking more might make me toxic, so going up on the dilantin isn't an option.

His first suggestion was to go back on the Keppra, 500mg b.i.d, but the Keppra & Phenytoin combo wasn't preventing the simples either, so what's the point? Plus I had mood swings with the Keppra--not exactly a make it/break it factor for me, but when you add that to the fact it wasn't really all that effective, then why bother?

I've got an appointment to see him this morning. I'm going to ask for alternatives to the phenytoin. I hope I can get a better handle on this soon. I'm fed up with having seizures and I don't want my seizures to complicate our lives more than they're already going to be complicated.

~Mo
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Old 01-22-2010, 08:35 AM
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Good Luck at your appointment MO
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Old 01-22-2010, 10:20 AM
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Lamictal is supposed to be a good med for simple partials, also sometimes in combo with Klonopin.
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Old 01-22-2010, 11:33 AM
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Just got home. We came up with a couple options after discussing it.
1) Try Lamictal as combo therapy with the phenytoin.. OR
2) Go on Trileptal and eventually get off Dilantin.

I got the feeling that he (my neurologist) feels that since I haven't had any problems with Dilantin so far, it might be a better idea to add lamictal because the two drugs have different mechanisms of action and that might mean better seizure control. Down the road I may get to a point where dilantin isn't effective or I start having problems with it and at that point, switch to something like Trileptal because the two have similar mechanisms of action.

On the other hand, sometimes just because two drugs work in the same manner, it doesn't mean that one drug may be more effective for one person while the other is more effective for someone else. So the Trileptal could potentially work better for me than dilantin... or it could be less effective.

He left it up to me to decide. I have to call the office back and let them know what I want to do. I have insurance (thank God) so the cost isn't a factor. And I suppose switching from trileptal to dilantin is more risky (as far as having seizures go) than just adding a second drug.

I was made aware of the potential problems with Lamictal, but hopefully my body won't react negatively to it if I decide to try it, and that's the way I'm leaning at the moment.

Thanks for your feedback folks!
~Mo
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Old 01-22-2010, 04:34 PM
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Moses, please pay attention to the length of time you're on Dilantin. If you're on it for a prolonged period of time, say 20+ yrs., please think about raising the issue of being titrated off (weaned from) dilantin. Long range side effects can result in peripheral polyneuropathies - NOT GOOD!! They make your limbs feel numb & heavy over time. Please discuss this with your dr, & neurologist!! It's important! (Speaking from 1st hand experience!)
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Old 01-23-2010, 07:49 AM
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How fast does your Dilantin serum level drop? anyone...
Like overnight....
Any affects if you miss a dose at night time?
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