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nocturnal epilepsey only need advice anyone else have this ?
Thu, 01/26/2006 - 14:26my daughter has seizurs at night when she sleeps and if she falls asleep during the day . this happens every night about one hour after she goes to sleep and throughout the night averaging 12 to 15 per night she has been on almost all medication but nothing seems to work she does not have any in the day.
does anyone else have or know anyone else with this type of epilepsey?
Comments
i totaly agree with you
Submitted by benji on Mon, 2006-02-06 - 16:08
i totaly agree with you about the medication when my daughter was on topamax it seemed to work for a few weeks but then she started to get worse and as the topamax increased so did the sz .but the worse drug of all was keppra and her sz became longer and violent iam now looking into alternative medicine and hypnotherpy just dont know what to try next lost all faith in doctors they dont previde many answers
Re: i totaly agree with you
Submitted by Jake Reed on Tue, 2006-02-07 - 11:26
Our doctor wants us to have a genetic test done (I believe uncovered by insurance). This could help pinpoint the type of epilepsy my son has. At this time, it does not change how to treat it (thus, not covered by insurance). Justin went through a metabolic study a few ago. The results are not back yet, but the doctor encouraged us that there are huge studies being done at this time dealing with the genetics of epilepsy. He believes in a few years, these types of tests will pinpoint which type of medicines will work best on each individual. I’m so sorry your daughter and the rest of your family have to go though this. It is very hard. My heart goes out to you. I will try to inform you on any information that I find is helpful. My fear is that it is not helpful to everyone with the same disorder. The Vagus nerve stimulator is the next option. I am going to find out how many children/adults with night seizures have had this installed. I have heard of good results and not so good results using this, but no information on night seizures. The patient may have to be over age 12… I'm not sure. God Bless!
Jake Reed
We spent a good part of the
Submitted by Jake Reed on Mon, 2006-02-06 - 11:40
We spent a good part of the week at the Cleveland Clinic in early January. They did a complete study, including the EEG-video telemetry. After falling asleep, every 10 second, my son has seizure activity. Not all of this activity leads to seizures, but it can. Justin, prior to the epilepsy @ age 5, could read, write, and play piano. Now, he can still read a little, but we will have to teach him to write all over. He even has a hard time tracing words. I believe most of this is due to medication. My wife and I are not going to let the Drs change his medication unless he becomes critical. I'm done with the changes. I don't believe any of the seizure meds work on him very well. They just snow him. With the last increase of medication on Saturday, he now will put his coat on upside-down and not know the difference. I'm hoping the Topamax will level out enough for him to be able to learn again. It is hard to watch him drool and roll around on his head when I know how know how smart he is. I miss his old ways, and I'm angry. I have to continually give this to God, because he knows better than I. My mother has a milder form of epilepsy. She went 25 years without medication (from years 25-50) without a seizure. She started having a few a year again and has been on meds ever since. Jake Reed