Newbie Introduction

[KimberlyD]

Hello, my name is Kim I have had narcoleptic grand mal seizures since I was 6 years old. I mainly go off of what people that have witnessed them tell me because obviously I have no memory of what happens during them. I am fortunate enough to only have about 4 each year but they are speratic. My husband has narrowed it down to me having them when I am either really happy about something or really stressed. He says that trying to keep me on an even keil is his day to day job. Which by the way is not an easy task.

A little about my life...I am the mother of 11 children, 7 of them still at home. The ones at home are 16,16,12,12,8,7, and 3 yrs old. No, none of them are twins we have the "yours, mine and our" bunch. I am 36 yrs old and I work part time/full time (depending on the week). I also attend school full time to become a surgical technician. I help coach my kids baseball teams and try to stay active with them.

This is pretty much my life...I am happy to be here where others are going through the same things I am and where I can find support.

[Nakamova]

Hi KimberlyD, welcome!

Eleven kids! No wonder you occasionally get stressed -- both positively and negatively.

I'm curious about your narcoleptic seizures? Do you also have other narcolepsy symptoms? Are being treated with meds?

Best,
Nakamova

[KimberlyD]

The doctor gave me a cpap to use to help control them as well as my carbitrol. I am not on any other meds for the narcolepsy part of it though. They say I have minor apnea but not major. I have had seizures with the mask on so I don't use it all the time.

[Nakamova]

So how do the seizures differ from nocturnal epileptic seizures? Did an EEG rule those out?

[KimberlyD]

I started out with the diagnosis of narcolepsy when i was 5 the doctor said it progressed into the seizures so he kept the narcoleptic part of the diagnosis. From a medical stand point they are actual full narcoleptic seizures now but it has never been put in my medical file that way. I don't know why they haven't changed it. My mom tells me I started off just with falling asleep in classes and during play with weird breathing sounds (no convulsions). I don't remember that part of it so I don't know how fast it progressed. The EEGs have never been able to detect any seizure disorder, they all come back normal...which from what I understand is pretty normal for these kinds of seizures.

[Nakamova]

I wonder if neurofeedback would help at all. I think there's been some anecdotal success using it to treat for narcolepsy, but there isn't a ton of data out there.

[KimberlyD]

I haven't heard anything about neurofeedback, I actually just within the last 5 yrs have changed neurologists. My last one kept giving me tests when I was awake and I could never understand it. This new doctor is a neurologist/sleep specialist. I had a overnight sleep test 2x now and that was when they gave me the cpap. Does the neurofeedback have anything to do with sleep studies?

[Nakamova]

Your new neurologist may be aware of neurofeedback, but it's relatively new, and not many neurologists refer patients for it yet. So your sleep studies were probably unrelated to neurofeedback.

Still, it would be interesting to see what your neurologist says about it. You can read a bit about it here:
EEG Neurofeedback
http://www.isnr.org/information/sleep.cfm
http://www.talkaboutsleep.com/messag...ic.php?t=23239

[huskymom]

7 still at home..school..working...coaching..