How do you know if it is a seizure or narcolepsy I have both?

[georgebailey]

I was diagnosed with severe narcolepsy last year and this year with temperol  lobe seizures. I am on provigil 400 mgs a day and Ritalin as needed. I am trying to take lamictal just 25 to start increase to 200, but having some problems, may switch me to Keppra I have digestive upsets after some seizures, but recently I blanked out and when I came to,  I had written odd things all over the papers I was grading. I then, no way to make this sound pretty, had a bowel movement in my pants.  My neurologists does not think the vomiting and diarrhea are related to seizures, but my regular doctor does. I had febrile seizures as a child and then many episodes of dizziness, head tilt, walking difficulty, and violent vomiting through the years. They finally did an eeg after a bad episode that was followed by explosive diarrhea. and it was positive for left temporal seizures.  I'm just a mess and I have three doctors now and they don't want to step on each others toes. I just don't know what brain activity it is?

[MommyLisa96]

Thanks for your kind words.  We'll keep our fingers crossed for Skylar.  You take care yourself!

MommyLisa96

[georgebailey]

I don't think it is that common to have both although my sleep doctor does have other patients with both. The meds for the narcolepsey have been great and help with ADHD. I have been driving but limited and my sleep doctor thinks I should not anymore with the seizures and cataplexy. I work running a computer lab at a school. I ran a marathon two years ago.  I travel when I can. I told my employers just in case, but has not been a problem. I read a lot, love movies try to eat right.  My neurologist just told me to take care of myself mind, body, soul. at my age it is much easier to adapt. Your son is fortunate to have you in his corner. It is annoying, but it is just part of who you are and tell your son ultimately so much more interesting.

Take Care

[MommyLisa96]

thanks for your insight.  Do you know if it is fairly common to have both conditions of epilepsy and narcolepsy  for an individual? It seems to go hand in hand on these postings.  We have changed is meds several times since August and his levels are showing to be fine, at this point.   The 24 EEG should be a good test to help clarify his condition.  I would also like to get a sleep study done, as you mentioned.  I hope we can get this under control before the nice weather gets here.  We both work and I worry about his safety.

Are you able to drive and do normal activities?  

[georgebailey]

It sounds as if he has narcolepsy with cataplexy but could also be his reaction to the meds.. He will need a sleep study.  The multi latency one is very good for that.  It is a day and night one. I am seeing my sleep dr. today the first time since I've been diagnosed with the seizures also.  I would discuss with your Dr. about his activities because exercise helps both physically and psychologically. He can do many things as long as he is not alone and with those activities a helmet.  His biggest issue will be a little later when the driving subject comes up.  He should have an id card with his meds and condition and also a bracelet or some other sort of identifier. Seizure meds react poorly with other drugs so you want him to be safe in case of an accident. Take Care I know it is rough as a mom and  the flip side  a neurological mess.

[Dr Santos]

Hi,

Narcolepsy is a chronic sleep disorder characterized by daytime drowsiness, abrupt onset of sleep, are very tired during the day, have difficulties concentrating, or may have mood swings or behavioral issues. Aside from diagnosing seizures,  an electroencephalogram (EEG) may also help study sleep disorders such as narcolepsy. Other tests for narcolepsy include: actigraphy, polysomnogram, and multiple sleep latency test. Yo can read more about this through this link: http://www.mayoclinic.org/narcolepsy/diagnosis.html

Take care and keep us posted.

[MommyLisa96]

OMG...  my son, who is 12 has been having seizures since August.  The initial EEG showed to definately be Epilepsy.  Now...ever since we can't seem to get him regulated with meds.  He takes both Kepra and Deprakote.  He has been having these "nod-offs" or episodes where he will loose his balance and falls back suddenly.  Not to the floor typically, but has before.  He has complained about his sleeping, but we did not take too seriously - assumming it was meds and adjusted as needed with Doc's approval.  
  So, if he now has narcolepsy on top of epilepsy - how is he to cope with this?  How can he be normal?  We already keep him from riding bikes, skateboarding and soon swimming, because of his condition.  To top all this off, he is also ADHD!!  He cannot take his ADHD med because it will interfere with the epilepsy medicine.  
  The Neurologist is doing another 24 EEG on Monday to see what is going on.  Will this show Narcolepsy as well?  Any help or advise or a friendly shoulder would be great.  I am really a mess with all this.  His school year has really tanked due to all of this.

MommyLisa

[georgebailey]

What meds do you take? I'm trying Keppra now for the seizures so far ok.  My special talent is sleeping and the eeg showed when I was sleep deprived. I've tried taking less of the provigil, but then I am barely coherent and not functional.  It is interesting, but I think they are all linked.

[narcolepticgirl]

I have been diagnosed with seizures and Narcolepsy too.  I am like you though I am really unsure if I have either.  First though the Lamicatal will give you sever diarrhea, or at least it did it too me.  It also made me depressed.  I also have a severe case of periodic limb movement disorder.  When I have a naroleptic attack as soon as I get to the point  of falling asleep I will have a huge full body spasm.  If I am lying on my back I will rise up, raise my legs and push as if I were giving birth.  If I was on Lamictal I would have eplosive diarrhea then too..  When I was originally diagnosed with seizures it came from the left temporal lobe too.  It only showed up on EEG's when i was sleep deprived, because I fell asleep during them.  I hope it helps knowing you are not the only one.