I am 34 and was dx'd with Narcolepsy/Cataplexy last year after searching for answers for a very long time.
I have white matter and grey matter spots/lesions that are unenhanced with contrast (demyelination) and was told it could possibly cause partial seizure disorder. I just forgot all about that part and concentrated on dealing with the Narc/Cat.
In september of this year I was taking a nap and awoke to my face seizing up and my eyes rolling back and twitching and my mouth and jaw felt ripped open to the limits and I could no longer breath in or out. My boyfriend was here and witnessed the entire thing and said I was semi conscious and trying to communicate for about a minute and then passed out and twitched and seized for another 2 minutes and then was in a semi coma state for about 15 minutes before I became conscious again. I of course went to the ER and had tests and nothing was found other than the spots that I already knew about. Neurologist the next day said it can happen to many people once ina lifetime and not to worry too much.
Then come January 23rd, I was home alone, napping in the evening and woke up once again to my face seizing up and I realized I was sitting on the toilet. I immediatley realized I couldn't breath again and my eyes were twitching and my face felt like it was being pulled apart. I remember grasping for the tub and then losing consciousness. I awoke to not knowing where I was, let alone how to speak or do anything, even sit up....my pants were down and I fought like hell with myself to get them up....then it all hit me that I had just had another seizure and crawled the best I could to the phone where I couldn't even remember how to use the phone for a minute or so....
This time my neurologist prescribed ativan and said he waasn't sure that these are true seizures since I am conscious during them and they aren't just absense seizures or partial seizures that I'm describing. He tought maybe they could be tonic clonic seizures but there again I guess consciousness is not preserved in those types.
My question, after that long history is, what could possibly cause this and is it related to Narcolepsy or sleeping or Epilepsy or the spots in my brain.
These episodes were the scariest thing I have gone through in my life and I want to avoid another however i can.
I don't have health insurance so I can't get a follow up MRI from 2 years ago......so hpefully soon I will be able to afford one and have my neuro make the comparison...maybe then I'll have more answers. Until then, any info, help, or advice would be greatly appreciated.
I also have narcolepsey diagnosed last year. I take provigil unbeleivably expensive, but recently got good insurance. I also take ritalin if I need to drive. I had a seizure 12-23-08 It was my second major one in six months. The er again told me I was fainting from the flu or bp.Luckily my doctor listened when I said I had wet the bed recently and he ordered an eeg. It was positive for temporal lobe seizures which are deep in the brain and not easily diagnosed. I had had two contrast brain MRI's because of visual issues nothing was found. I just felt like a nutcase and quit telling anyone my bizarre symptoms. I was so grateful this doctor listened and I am trying Keppra now because lamictal was hard on me.I don't understand why your doctor isn't looking into seizure control. Read up on temporal seizures. It is intriguing, but also difficult to diagnose. Good luck and I also have trouble differentiating between narcolepsy and epilepsy they just told me it was a different part of my brain Mine are mostly at night or in the early morning and have had many in the bathroom as it wakes me up and I feel the need to go. Be careful I had a near skull frature from a seizure.
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