My Story, need feedback

[kenzbrain]

Ok, so I'm 64, I got epilepsy out of the blue at 30 for no reason they said after a grand mal seizure. They put me on Dilantin 400mg and sent me on my way. I only had 7 seizures over the next 25 years or so, pretty mild, and that was when I either quit taking my meds or had the flu.

When the Dilantin quit working they tried Felbatol at first, then switched to Topamax, and it worked fine for a few years. Then, no more tonic-clonics, but I started having complex-partials, like 12 of them in a short period of time. This was all new to me. So they tried adding Vimpat, but it didn't work, then added Zonegran, and pulled away from the Topamax and added Keppra. Those 2 worked for a few years and all of a sudden complex partials again, so they upped the zonegran, which I am taking 500 mg/day of now, upped the keppra, which I am taking 2500 mg/day now, and that doesn't seem to be completely getting rid of them as I've had 3 since May. My neurologist is adding Lamotrigene, so at this point I am now up to 100 mg/day of that with the other 2 at the levels where they were. He wants to phase out the keppra and ramp up the lamotrigene.

Now, I can take a lot, but doesn't this sound like quite a bit of meds to be on? Actually I'm quite a happy guy, and am not having too much in the way of side effects believe it or not. I am just a little concerned about how well the zonegran will work with the lamotrigene alone once the keppra (actually levetiracetam) is gone. Has anyone done such a transition?

thanks (first post by the way, hi)

 

[Nakamova]

Hi kenzbrain! Welcome to CWE!

Usually when someone's seizures are controlled by the very first medication they try (Dilantin in your case) that is a good sign that they will respond well to monotherapy with other anti-seizure meds. So it's surprising that you've needed to try so many when the Dilantin quit working.

Some people do find that it takes a "combo platter" of meds to control their seizures, though. If you're worried that you're taking too many or too much then you should discuss it with your neuro. As far as dosage goes, 500mg/day of the Zonegran is on the high side. According to the manufacturer: "Controlled trials suggest that ZONEGRAN doses of 100-600 mg/day are effective, but there is no suggestion of increasing response above 400 mg/day." In other words, going above 400mg/day hasn't show any real added benefit. You might ask your neuro about reducing the Zonegran dosage after you've fully ramped up on the Lamotrigine.

Zonegran and Lamotrigine both have relatively long half-lives (60 hours and 30 hours roughly), so you may find that they work together better than the Keppra (half-life = 8 hours). It's great that your side effects have been minimal so far. Pay attention to how you feel as the Lamotrigine is upped and the Keppra is reduced, and if anything feels off let your neuro know.

 

[AlohaBird]

Hey, Nak? Do you have a handy table somewhere that has all the half-lives listed in one place? I'm thinking about going med shopping as well.

If I were kenzbrain, I would definitely be concerned about that large of a med cocktail. I think the polytherapy approach is thought of among neurologists as rather "old school" these days. If a patient can be controlled on monotherapy, it just makes everything easier in terms of interactions between the AEDs and with any other meds that might be needed along the road of life.

 

[Nakamova]

I usually check wikipedia and also this table:
http://www.ncbi.nlm.nih.gov/books/NBK2513/table/A974/?report=objectonly
Half-lives are pretty rough and can vary quite a bit from person to person, but Keppra is known as one of the shortest and Zonegran as one of the longest.

 

[valeriedl]

I had my first seizure when in 2007 when I was 27. It came out of the blue and the drs still don't know what caused it.

I had been on several different meds, more than one most times, through the years but nothing really seemed to help much. My neuro suggested I get a VNS and see if it helps. I did get the VNS and it did help a lot. I'm having less seizures a month and they aren't as bad. I'm also currently taking Depakote, Tegretol, Keppra and Lamictal. My neruo is reducing one of my meds in hopes to maybe get me off of it.

Even with all the meds and the VNS I am still having seizures. Just because you're taking meds or have some type of surgery doesn't mean that your seizures are going to stop, I wish it worked that way. It could just decrease them like it does for me.