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nocturnal epilepsey only need advice anyone else have this ?
Thu, 01/26/2006 - 14:26Comments
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
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
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.
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.