nocturnal epilepsey only need advice anyone else have this ?

My Experience

Submitted by terrielouisep on Sun, 2009-09-20 - 15:57

I started having seizures when i finished school at 16 so unfortunatley i was beyond growing out of them.

i have had them for 5 years, i use to have 1 a year for 2 years then as i went into adult hood i had 1 every month, in july this year i have 5 in 1 month which scared me so much so i went to the dr's as i was suffering with anxiety of being scared to go home and insomnia, i am on lamogtrigine 350 a day while also on a tablet of a night which relaxes my brain.

after being in the clear for all of august i had one last night  : . (  i went on this site to know im not the only one and it brings comfort to know their are others and even though its horrible that time we have them we are in the same boat. i need to go back to my dr to get a higher prescription and pray for the day to come i will be healthy for years as i am so scared of them. i know i have to go to bed soon which is making me anxios because of last night but i listen to my ipod during sleep and hope that the relaxing music can help some how

i feel sorry for us all and hope in the future there will be a cure.

Re: nocturnal epilepsey only need advice anyone else have this?

Submitted by DBL on Wed, 2008-09-10 - 21:49

I am in my late 50's and have had noctural-only temporal lobe seizures since I was 8 years old.   I have, in earlier years, gone for months without having them, however for the last 15-20 years have averaged between 0-3 a night.  I now have approximately two per night, 5 nights per week. 

 I took dilanten for many years, but have been taking tegretol for about the last 15 years or so. 

 I never know that I have had a seizure and have no indication that one is to occur.  I have been on a number of drug studies trying experimental medication and have during the tapering off/titrating up of old and new medications had very rare daytime temporal lobe seizures.

I often sit up in bed, swing my arms left and right and shout very loudly (it used to be cheers as if I was at a sporting event but for the last few years it has turned into swearing, or so I am told).

 I often never injure myself.  

My doctor has very, very few patients that fit my profile of seizure type. He believes that my seizures are triggered by REM sleep, which I tend to agree with.

My seizure activity has never hampered my active, vigourous sporting lifestyle (I ski, skate, scuba dive, play tennis, sail, swim, exercise, etc.)

I have never found a medication that fully controls my seizures, tegretol has come closest.

PLEASE LET ME  KNOW IF YOU HAVE HAD SIMILAR EXPERIENCES AS MINE AND IF YOU HAVE FOUND MEDICATIONS THAT ARE PARTICULARLY EFFECTIVE WITH THIS TYPE OF SEIZURE.

I would be happy to enterain any questions that you might have as well.

best regards,

DBL 

Re: nocturnal epilepsey only need advice anyone else ha

Submitted by Trisscity on Sat, 2008-09-06 - 06:55

My daughter has seizures only after she falls asleep. This started when she was 4 years old. She still used to nap during the day then but didn't usually have a seizure. They only happened after night time sleep. She's 8 now and if she takes a nap during the day she will sometimes have a seizure but this is because she's really tired (sleep deprivation) from the weekend or if we were at an outing all day or something like that. Her seizures start within 15-20 minutes of her falling asleep and she only has one. Then she is fine for the rest of the night. They started out as tonic clonic and she took tegretol and was almost seizure free for a year and then I think she had a growth spurt and started having them again because she outgrew her dosage. Since then she has the focal seizures where she twitches in her eyes and mouth area. She stiffens up sometimes and other times she has full movement in her body. I've actually seen her come out of the seizure briefly (few seconds), say something to me, and then start seizing again. It's really bizarre. Now she's been on topomax and that worked for awhile and when she reached the highest dose she could be on that, we are now weaning her off that and she's on trileptal. This transition has been trying because she recently started school and we had family in town for Labor Day. So her seizures have increased but I think it's all triggered from sleep deprivation and stress. She goes months without a seizure and then something will happen like family in town, school ending and she stays up a little later, or she has a friend stay over and they stay up too late and get up early and she ends up having a seizure or a few over a few days. I treat her like a normal child but I am very diligent about monitoring her sleep. She needs 10 hours and if for some reason she doesn't get it I let her sleep in and I take her to school rather than get her up for the bus. I don't let her stay over at friend's houses and it's rare that friends stay over here. I keep her in activities and she's a very smart child. Cognitively it has not effected her. They say she'll outgrow it in her teen years. Her 2nd grade teacher had childhood epilepsy that started at 4 and she outgrew it when she was 7 and the lady that owns the modeling agency we used to be involved with has a daughter who had epilepsy that started when she was 5 and she outgrew it when she was 17. I'm hopeful that it's something she'll outgrow in her teen years. In the meantime I'm comfortable with the meds right now controlling it to a point. My parents are flipping out and want other answers. My mom wants to take her to Cleveland Clinic but according to my current neurologist the only other option is no meds at all and I'm not comfortable with that.