Intro w/question

[JohnnyU]

Hello all,
I am the step father of Michael who has drop seizures. Over the years he has been on many med combinations. He currently is on Dilantin (160mg) Lamictal (900mg) & Lyrica (300mg). We want to wneen him off of the Dilantin totally and have the lamictal handle his possible Gran Mals. Has anyone just used only Lamictal as their Gran Mal drug? The three he is on now are doing a very good job but why have the Dilantin if it is not needed is our goal. Our Neuro is leaving it up to us (that's a whole other post). We are thinking removing 30 mg per month to 3 months at a time but worry about the Gran mals reappearing which they have not for awhile.
Thanks,
JohnnU

 

[Nakamova]

Hi JohnnyU, welcome to CWE!

I'm only on Lamictal and it controls my tonic-clonics (gran mals) just fine. I would recommend that you go very slowly in doing any tapering off. Even slower than the pace you've described. I know that it seems slow already, but I've found that the brain is sensitive to even small drops in dosage, and the longer you can wait between taper levels the better. Either way, I wish you and your stepson the best of luck. It's always nice to reduce the medication load, and since all the AEDs have short- and long-term side effects, if you can get rid of one that's terrific.

Best,
Nakamova

 

[JohnnyU]

Thanks Nakamova for the quick response. Are you only on lamictal then? Do you still experience head/hand drops and occasional falls? What is your dosage if I may ask and have you used other med's prior as well?

 

[Bernard]

Hi JohnnyU, welcome to the forum. :hello:

If the neuro presented you with the option, s/he must feel that there is a possibility that he would be controlled without it.

160mg of Dilantin is not a lot (for an adult/adolescent). I guess Michael is still a boy?

Are you/Michael keeping a seizure diary/journal? I'd recommend it if you decide to pursue experiments with changes in treatment.

 

[Rae1889]

hi there JohnnyU,
I am taking Lamictal *my first AED* and it seems to be holding off my tonic clonics *grand mals* by not letting my complex partials or simple partials *auras* generalize. I believe I only have had one drop seizure, but have had a few myoclonics. My current diagnosis is JME, but I think that its a load of doo-doo.

I am not sure if Lamictal is right for me just yet, as I dont have the control I want, but I am only at 350mg total. 175mg morning/ 175mg at night. *occassionally I forget to take the little 25mg pill, so it ends up being combinations of 150mg and 175mg* but 900mg seems like alot to me, so I think that it should be enough to keep it steady. But that is just my opinion, as we do not give medical diagnosis or adivce, just going by experiance.

how old is michael?

 

[Nakamova]

Hi JohnnyU --

I was on Dilantin first, but my neuro didn't like the potential long-term side effects. I then tried Zonegran but it messed with my appetite and gave me low blood sugar. So now I'm on Lamictal (175mg per day), with complete seizure control and no other seizure symptoms. But keep in mind that what works for one person won't necessarily work for another. I tend to be medication-responsive, and I seem to be able to get away with fairly low doses.

 

[JohnnyU]

Hi Nakamova,

Michael (age 31) has been on Dilantin since the start of his seizures. His 1st Gran Mal was in 2002. He has gone through many AED's along the Dilantin and @ many different dosages. He has been through, Keppra, Zonagran, Depakote, Topamax, Lamictal (current) & Lyrica (current). What was your dosage of Dilantin when you started to wheen off of it? Michael was @ 450mg, then 350 mg for a long time always with the Lamictal until it was slowly reduced to the current 160mg when Lyrica was introduced. Did you have any Gran Mals during your phase-out of Dilantin at any dosage level? We are actually somewhat accepting where Michael is with his current dosages since when the Lyrica was introduced his head/hand drops were reduced substantially. We now only witness occasional "almost" Gran Mals (neuro says they are only complex seizures) where he is out of it for approx. 10-20 secs. in addition to "almost" falls but he catches himself plus the same with the head/hand drops.

 

[Nakamova]

I think I was at 200mg when I started to wean off of Dilantin. The first time I tried to wean off of it was less than a year after my first seizure, so I wanted to see if I could go without meds altogether. My neurologist told me to taper off over two weeks (!). Needless to say I had a seizure almost immediately after I'd tapered off.

At that point I went back on the Dilantin. After a few years I asked to try going med-free again. This time I tapered off over a 3-month period, and I remained seizure-free for about 3 months before seizing and then going onto Zonegran. When the Zonegran didn't work out I went onto the Lamictal.

So I was seizure-free even at the lowest dose of Dilantin. But I think it can be tricky balancing out multiple medications. Keep paying close attention to your stepson's seizures as he's tapering. If you don't already, I recommend keeping a seizure diary. Not only can you keep track of the seizures to see if they escalate or change in frequency, you can also see how things change during the taper, and get a handle on any side effects. And if you can also keep track of stuff like diet/nutrition, sleep and any other physical or physiological stressors, you can potentially isolate seizure triggers and try and avoid them. The most common trigger is fatigue, but a number of people on this site have found that gluten seems to be factor, and switching to a gluten-free diet has reduced their seizures.

 

[JohnnyU]

Thanks,
Being an engineer by trade, yes I have kept logs from day one, everything is recorded & even used whenever we have interviewed with possible new neuro's.