Next Steps

[jcroper]

I have tonic-clonic seizures since 16 which were mostly controlled by meds for several years. Switched meds in 2006 after some breakthrough seizures, from carbatrol to keppra to lamictal, which finally worked (though it brought with it increased insomnia and lovely migraines). Now I'm starting to have breakthroughs again on the lamictal. Looking to the future I'm taking a serious look at what comes next. We ramped up dosage on lamictal recently, and I just had a seizure with the increased dose last week. I've been on multiple meds before, though I don't tolerate it well (tends to make me stupid, and that's not really an option as a grad student). A recent combo trial of lamictal and topamax (trying to help migraines) made for the most hellish month I've had in a long time. (Note, low-dose amitryptiline has helped with the chronic headaches, which is good news.) So, all of that said... I have an appointment coming on the 30th and I need to go in ready to address what to do now.

Having gone through six meds now, I'm looking seriously at alternative/complementary treatments. I would love it if surgery could take away my problem, but I don't think it's a viable option now. I don't have time or money to go through the intense testing and the monitoring involved. On top of that, I don't know if I'm a candidate, with generalized seizures and difficulty finding a focus point(s).

I used to be strictly T-C seizures, and only in my sleep, but in recent years I've shifted to more partial seizures that happen any time of day. I'm considering bring up the possibility of a VNS, but I'm not entirely sure about it. It does seem to make some sense, especially if I'm moving toward having more partials.

The only other realistic option seems to be trying other meds. I don't know if this is my best approach or not, as I've spent far too much time in recent years switching meds around. I'm slightly apprehensive about the prospect of trying more and more meds. It seems to me like a patch job, just hoping to hold out a little longer. I've been through six meds/combos by now and there's not much end in sight.

So I'd like to go into my next appointment with some thoughts and options. I don't know if the VNS is a viable option, or if I should just stick with more meds, but I'd be up for anybody's thoughts. Epilepsy patients commonly seem to almost know more about epilepsy than our doctors, so I'm throwing this out there for an (un)professional opinion.

Thanks to all!

[mitzyjalapeno]

It sounds like you have a lot of the same symptoms I have had for 11 years now. I started with just tonic-clonic seizures at 18, and it was mostly controlled with dilantin for seven years. We added phenobarbital - I hate it, but it works. We tried tegretol, topamax, keppra, depakote and finally settled on adding lamictal, which made me feel more human, and ativan. i still had breakthrough seizures, though, and they started changing, just like yours. (I also started having really bad headaches.) Recently, it all stopped working. We added vimpat as well; I'm still not sure how effective that is.

At the same time, I was referred to an epilepsy specialist. My neurologist doesn't seem to be concerned that I'm still having seizures, and I can't remember anything, and my quality of life is pretty bad. This new dr asked me to do a week-long video eeg, with no medicine at all, to try and find what kinds of seizures I was having, where they were starting, etc., to try and find the best medicine. As an afterthought, he also mentioned the vns. When we did the eeg without meds, he found out that I had more than 300 seizures in a 24-hour period, while functioning. There were no outward signs. I was talking, eating, sleeping, all normally. I did eventually have two tonic-clonic seizures, the worst I've ever had, but the dr said he still could not pinpoint exactly where everything is coming from. I'm having all sorts of seizures, though, instead of just the tonic-clonic, and he said that I'm an extremely good candidate for the surgery. I don't know if anyone else has had the same experience, though.

So, my advice is this: talk to your doctor about your concerns, the possibility of vns instead of just band-aid solutions, and ask him/her frankly for a referral to an epilepsy specialist, if there is one in your area. It can't hurt to talk to someone who may have a lot more relevant and current information. Also, pay attention to your schedule. Make sure you eat regularly and don't go without sleep. Any stress on your body could be a trigger. Also talk with your doctor about giving up caffeine. It was hard, especially the chocolate, but it does seem to help a little.

Best of luck - I know how hard it is when it seems like you have no options.

[Bernard]

Hi jc, you can try one of the seizure control diets (see the chart mentioned in my signature) practically for free. Get a copy of Epilepsy - A New Approach: What medicine can do, what you can do for yourself and try the exercises mentioned in the book - it's not an expensive book. I also recommend EEG neurofeedback if you can afford it.

Proactive Prescription for Epilepsy