Former Dilantin user, Keppra not working

[Kornfuzed]

Hello everyone. I started taking Keppra about a month ago after being off Dilantin for almost 20 years and I have a few questions. My epilepsy history is: Way back in 1981 I started having partial seizures. Those lasted about 1.5 years and then I had a grand mal. A brain tumor was discovered and removed. After allergic reactions to Phenobarb and Tegretol, I took Dilantin for about 12 years and I only had a few more partials. Finally, in 1995, after 2 years without a partial, I was taken off Dilantin. I was seizure and med free for about 10 years after that but then partials returned. I had been dealing with them without meds but I had grand mal #2 about a month ago so I thought I should get back on some meds.

My neurologist prescribed Keppra. It's been 4 weeks and it doesn't seem to be working. It gives me a headache within 15-30 minutes after I take it and it makes me tired and a little light-headed. I'm also still having partial seizures. One was 2 weeks after I started the Keppra and the other was 17 days after that. They are exactly the same as they were when I was dealing with them without meds. They aren't shorter or less powerful. They're exactly the same.

So, my questions are:
1) How long do I take Keppra before it's decided it doesn't work? There's no rash or anything like Phenobarb and Tegretol immediately caused but, again, Keppra seems to be doing nothing after taking it for a month. My prescription is running out and I don't want to renew it if I should try something else

2) My research seems to say Keppra is taken with other drugs. Why did my doctor prescribe Keppra by itself? I saw her after my first post-Keppra partial and she gave me a prescription for Clonazapem. However, she said to only take it at night if I'm having trouble falling asleep. I haven't tried it yet. I'm not too crazy about the possible side effects

3) Has anyone had success with Dilantin and then been moved to another drug that also worked well? Dilantin seems to be a little less popular now due to long-term ill effects (liver issues, I think) but 10 years on it didn't seem to affect me much.

Thanks for reading. Any response would be greatly appreciated. Thanks!

 

[Dolores]

I've been on Dilantin & Phenobarb for 40 years.
My doctor keeps tabs on the various long term effects and has me on a number of supplements. My seizures have been under control for 14 years so I really have no desire to change medications. My only problem with Dilantin is that I tend to start overdosing every once in awhile. We haven't been able to figure out what triggers the overdosing, I think it's a combination of things that for me become a perfect storm. Luckily I'm starting to recognize the signs much quicker so I get a blood test then my doc and I decide the best dosage for me.

I've never been on any other medicine and at this point know Dilantin so well that I prefer not to switch to something more stable since everything has side effects.

Hang in there!

 

[Eli]

If I recall correctly my epileptologist said I'm on the keppra to prevent my t/c's but I needed another med for my partials. Of course since other meds didn't work we decided I'd have to live with my partials.

So I've been under the impression that keppra was better for controlling t/c's.

*edited cause I forgot....
I had horrible headaches and migraines when I started the keppra. We had to lower my dose then split it up throughout the day. I still have the headaches/migraines (like now) but they aren't as often.

The drowsy/dopey feelings eventually went away or im just used to them now

 

[jyearta]

I'm on dilantin and clonazepam (klonopin)

I have not had absence / simple partials to the degree I used to when I was on Dilantin & Phen.

Dr. started back in 2004 trying me on other seiz. medic, saying I needed to come off dilantin, this was an old medic. and the new medic. were much better.

You name the medic. I was put on it. I couldn't tolerate any of them, I either had seiz. (even worse seiz.) or the side effects were so bad.

I went back to the neur. I had seen many years ago and he agreed to put back on dilantin he added the clonazepam.

 

[Nakamova]

Hi Kornfuzed, welcome to CWE!

So, my questions are:
1) How long do I take Keppra before it's decided it doesn't work?

Hard to say -- Keppra gets up to a working dose fairly quickly (one reason the docs like to prescribe it), but it's possible you need a higher dose. You might want to give it another month, but it's your call. Certainly you should talk to your neurologist about how and when to safely transition off of it, if you don't feel it's working.

2) My research seems to say Keppra is taken with other drugs. Why did my doctor prescribe Keppra by itself? I saw her after my first post-Keppra partial and she gave me a prescription for Clonazapem. However, she said to only take it at night if I'm having trouble falling asleep. I haven't tried it yet. I'm not too crazy about the possible side effects

When Keppra was first introduced, it was as an adjunct medicine -- because of how they have to be tested on humans, that's the first use new anti-seizure meds are approved for. But now Keppra is actually used quite commonly as a standalone medication.

3) Has anyone had success with Dilantin and then been moved to another drug that also worked well? Dilantin seems to be a little less popular now due to long-term ill effects (liver issues, I think) but 10 years on it didn't seem to affect me much.

I started on Dilantin, which worked fine -- but due to worries about its effect on my gums and bone density, I eventually switched to Lamictal. I'm four-years seizure-free on Lamictal. I never had partials though, only tonic-clonics.

Best,
Nakamova

 

[Kornfuzed]

A belated thanks for everyone's reply. Keppra doesn't seem to be bothering my head as much it did. I've felt pretty "normal" the last two days. However, I now have an expanding rash in various spots. I've read that Keppra can cause a rash but could I resist it for 30 days and then break out? Phenobarb and Tegretol both gave me a rash but the rashes started 2 days after I started the meds. Of course, that was 29 years ago. Also, does anyone know what the Keppra rash looks like (big bumps, little bumps, close together, etc.). With my rash, I have 2-3 small bumps close together and then another group an inch away. It started yesterday with about 20 bumps on the right half of my stomach but now I have a few bumps on my waist, gluteus maximus and both outer thighs. Does that sound like a Keppra rash?

 

[no.guru]

My body did not like Keppra and I was on it for half a year or so, but it didn't give me a rash. Dilantin works well for me, but I've had to learn to live with its side effects.

I like to believe Jack Dreyfus was right and the FDA was wrong. There's no certainty.

 

[JLogefeil]

I found out that Keppra is a Slow acting medicine.
It can take 2 weeks to 2 months to start working.
I saw you only been taking for about a month, honestly I think that you should keep taking it and see if it works better.
You can also keep a record of what's been going in so when you do go to your doc you can show it.
Good luck

 

[loveslight57]

Hi, I had also had partials for one year prior to a gran mal in 1993, I was put on Dilantin. dilantin seemed to work fine unless the doctor lowered the dose. They added leviteracitam in sept of 2011 and since then have had 4 gran mals. They kept increasing my dose finally to 6000 mg a day. Now the dilantin isnt working either. I am taking the generic form of leviteracitam and have had 4 different manufacturers since I started. I think there is a connection. Of course the info from the manufacturer says that levetiracetam doesn't interact with other aeds , but I am starting to wonder if that is really true

 

[MuayThaiFighter]

I didn't think keppra really starting making me feel any different until about 2 months. I hope the right mix for you is found asap.

 

[Kornfuzed]

Thanks for the replies. It's been 4 months now and Keppra is still doing absolutely nothing. I still have 1-3 partials over a 1-3 day period every 20-30 days.

I will be back at the neurologist in the next few weeks so, hopefully, he/she/we can figure out a better treatment. Since my first round of partial seizures 30 years ago was basically resolved with the discovery and removal of a brain tumor, I'm really starting to think that simply taking medicine isn't the solution.

Anyways, I'll keep everyone posted on my status. Thanks for listening!

 

[loveslight57]

I was on dilantin since 1993, It controlled my seizures unless the dose was lowered. Because newer meds were introduced, and Pfizer seemed to have a problem with the switch over to new formulation of dilantin, my doctor tried lamictal. I ddint get the level within therapeutic range. I was put on leviteracitam in addition to dilantin in 2011. I had 3 grand mals within 7 months, now that levetiracetam is gone, I am 4 days short of 6 months seizure free. i don't think this is a coincidence, but not sure. any input.

 

[loveslight57]

I realized that I did reply to this awhile ago but wanted to check in again.

 

[jyearta]

I've been on Dilantin & Phenobarb for 40 years.
My doctor keeps tabs on the various long term effects and has me on a number of supplements. My seizures have been under control for 14 years so I really have no desire to change medications. My only problem with Dilantin is that I tend to start overdosing every once in awhile. We haven't been able to figure out what triggers the overdosing, I think it's a combination of things that for me become a perfect storm. Luckily I'm starting to recognize the signs much quicker so I get a blood test then my doc and I decide the best dosage for me.

I've never been on any other medicine and at this point know Dilantin so well that I prefer not to switch to something more stable since everything has side effects.

Hang in there!

I overdosed on Dilantin only because I lose 39 lbs. dieting & excerizing, I was seeing another Neur. at the time, I told him of my weight lose, I asked for my Dilantin levels to be checked, it was VERY HIGH, he didn't want to reduce my meds. so I found another Neur. they started lowering my dilan. slowly.
NOW I have gain 1/2 of the weight back, I have got to lose it, are I will have to increase Dilantin.