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nocturnal epilepsey only need advice anyone else have this ?

Thu, 01/26/2006 - 14:26

Topic: Living With Epilepsy - Adults

my 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

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

Submitted by DBL on Sun, 2009-09-20 - 21:18

I should clarify a few things;

My seizures are not triggered by REM sleep, but are triggered by regular sleeep (they don't happen during REM) .... I can explain why, since I just learned from my new Neurologist... just let me know.
Since my seizures are nocturnal only, do not distub my sleeping, do not result in any memorable bad or good dreams specific to them, I have no knowledge that they even happended and unless I am sleeping near someone neither to do they.
I do make a lot of noise, none of which I hear, but others nearby do.
So, as far as impacting my life or lifestyle they really don't.
It may sound hard to believe but I rarely even think about it and when I do it doesn't cause any anxiety or concern.
They just limit certain activities... like taking a trip on a close-quarters windjammer where we all sleep in same open area.... etc. but I can live with that.
I just spent 8 days on a cruise to Alaska with no issues whatever, for example.
I play tennis, ski, skin dive, sail, etc. with no adverse effect.
And, as I mentioned earlier hardly anyone, other than close family even knows I have this issue. If I didn't tell others, they wouldn't know.

Regards,

DBL

I should clarify a few things;

My seizures are not triggered by REM sleep, but are triggered by regular sleeep (they don't happen during REM) .... I can explain why, since I just learned from my new Neurologist... just let me know.
Since my seizures are nocturnal only, do not distub my sleeping, do not result in any memorable bad or good dreams specific to them, I have no knowledge that they even happended and unless I am sleeping near someone neither to do they.
I do make a lot of noise, none of which I hear, but others nearby do.
So, as far as impacting my life or lifestyle they really don't.
It may sound hard to believe but I rarely even think about it and when I do it doesn't cause any anxiety or concern.
They just limit certain activities... like taking a trip on a close-quarters windjammer where we all sleep in same open area.... etc. but I can live with that.
I just spent 8 days on a cruise to Alaska with no issues whatever, for example.
I play tennis, ski, skin dive, sail, etc. with no adverse effect.
And, as I mentioned earlier hardly anyone, other than close family even knows I have this issue. If I didn't tell others, they wouldn't know.

Regards,

DBL

Re: nocturnal epilepsey only need advice anyone else ha

Submitted by angelran on Thu, 2006-01-26 - 16:24

I have nocternal epilepsy. I have been able to control it first with Tegretol and now with Lamictal. (They just changed my meds.) I had a hard time controlling it at first. Even now, I have to be VERY careful and take my meds perfectly or I will have one. Like her, mine start about an hour after I go to sleep. The doc says that it has something to do with the sleep cycle that I am in at the time. Most of mine occur in the sleep/wake cycle but I have had them during REM. It is harder for me to wake up if it happens during the latter one. Does she wake up when she has them? I do but I know that many don't. Can you discribe her seizure? Does she go into full body convulsions? Is it focalized in one part of her body? Mine are sometimes focalized.

Re: nocturnal epilepsey only need advice anyone else ha

Submitted by txrhb1 on Thu, 2006-01-26 - 16:46

My daughter has tonic/clonic seizures that manifest mostly at night. Her seizures began at age 9, and she is currently 23 years old. During her pre-teen and teenage years, her seizures would happen at almost anytime during the day or night. She is currently 7 months pregnant, and although not completely controlled, her seizures have been fewer and longer times in between the seizures. We keep a baby monitor in her room, so that we can hear if she has a seizure. It has helped both her piece of mind and ours. I wish I had some magical words to make you feel better. All I can offer is a listening ear and a sympathetic shoulder when you need one. Know that you are not alone. ((( hugs ))), Barbie *************************************** "We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo

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