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Candida · 12-03-2002, 03:48 AM

I am looking for some hope really, as I have pretty much run out!

My husband had encephalitus 3 and a half years ago and after much testing and umming and ahhing, he has been diagnosed with severe epilepsy. MRI scan is normal, but eeg's have shown epileptic activity. He is on a large dose of Epilim (Sodium Valproate) which seems to work to a certain extent, and has also tried dilantin, which didn't do any good, Lamotrigine, which didn't do any good, and he is now trying Keppra. Trying a new drug takes at least 6 months in all, ie. a few months to introduce it, and then a few months to get him off it if it doesn't work, before the next drug can be tried. He is being treated by a specialist epilepsy unit, so I can't push for better treatment, and surgery is not an option as the origination of seizure activity is dispersed across his brain, which is apparently common after an infection in the brain.

He still has between 1 seizure a week and a few a day, depending on when, what and where he is at with drug changes. My question is, will this ever change? Has anybody else ever been in this situation? I know he won't ever stop having them, but will it ever settle down, or is it possible to find a drug that will reduce them significantly? I beginning to think this is what our lives will be like forever, and that feels so unbearable.

Thanks in advance for any positive messages anyone can give.

Candida.

12-03-2002, 11:09 AM

Have you looked into the VNS? Maybe that could be an option on atleast making the seizures less severe.... I only have the grandmal seizures and they do get more frequent when the meds are changing or upping the dosage. But I am having much luck with the Keppra/Lamictal combo ...... have had no seizures in a month in a half so I am really excited. But the VNS u can look for it in Cyberonics ......... its an implant. I couldn't have any operation because of the location of my seizures also but this maybe an option for you. My epi. doesn't want to try this yet .. he wants to try and get them controlled with the meds. Good Luck!!!!!!!

lady_grey · 12-16-2002, 08:18 AM

I agree about the VNS. I received mine about 8 months ago and it's been making a world of difference lately. It takes a little while for them to ramp it up to the level you really need -- the docs don't want to overload you at once. BUt once I got to that point, I really felt a big difference. I had severe epilepsy with multiple seizures a day. It was getting more and more difficult to hold down a job.

Things have definitely turned around lately. And because I'm on less medications, I don't walk around in that same drugged up fog I used to have.

Candida · 12-16-2002, 10:31 AM

Thankyou for your replies Ladygrey and Bluebird.

I asked my husbands consultant about the VNS and apparently in trials people who had epilepsy from post viral infections did not have much improvement with the VNS. Is this something you have heard?

Ladygrey - my husband hasn't worked for 3 and a half years since the encephalitus, due to seizures. I am impressed you have carried on working. Well done!
Plus it's nice to hear of someone actually improving. As I said, I'm pretty much running out of hope!

Thanks once again.

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