Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Nocturnal seizures
Wed, 06/29/2005 - 14:03Hi everyone, Can anyone tell me how you know if you have had a seizure while you are sleeping? thanks
Penny
RE: RE: RE: RE: RE: RE: Nocturnal seizures
Submitted by jmblou on Fri, 2005-07-01 - 07:56
I think maybe I misunderstood her post. I make the incorrect assumption that SHE was the one with epilepsy and noticed this situation with her son and I had no idea he was diagnosed with E. That being said, in my area heroin was not readily available, and I saw many people, people I knew were only doing coke (and alcohol of course) have a coke seizure. Not trying to pull any chains or tell anyone they don't know what they are talking about. Just that it was ignorant of me to assume (I had not read any of her other posts) that her son was not suffering from E. You are exactly right about your entire post. If I found my husband face-down in a pool of blood I would call an ambulance (I am new to this and often overreact) and be certain in my head he had the worst scenario -- a bleed. My son had an aneurysm 2 and 1/2 years ago so I am amazed you survived 4. I think 1 almost killed me and I wasn't even the patient. About the E data in your post, it was very informative, I have already heard it from our dr (oaf) and read a ton more on this site and others. I am aware that one seizure doesn't mean E, and if they can find a cause, like you said, like meningitis, they are not an epileptic. My husband has seen 2 neuros and countless er and primary care drs. It is well-documented in all records that he was having "spells" as long as a year ago. I know ya'll hate that word but at the time I didn't know what to call them but described them in detail to all drs. They all told me not to worry, nothing wrong with him. 3 mo. ago he had his 1st tc that lasted 11 min. When the emt's arrived he was just unconscious and vomiting. I heard them tell the er doc he did not have a sz. Like I'm too stupid to know what it looks like: his eyes rolled up in his head so hard he had busted blood vesels, his jaw was locked and he was screaming at the top of his lungs (I have since read this is just the air being forced past vocal chords), he was thashing from side to side, bruised everywhere, and was in an arc like he was being electricuted. When he woke up 2 hours later in the er, he didn't beleive he had a sz. He had no memory of it. The drs weren't taking me seriously. I left him with family and let my sis take me home to ppick up a car since I rode in the amb. While I was gone, he had 2 more tc in er. Needless to say, they were lots more interested in my story about what happened when I returned. They put him in ICU because they thought he had a bleed. They did every test imaginable from the neck up. All they could find was a little arthritis. His protein was elevated in his spinal fluid, but no white cells present. The dr said oh, well, let's just blame it on meningitis and not report him to the dmv. He put him on depakote 1000 for his migraines and told him not to drive for 3 wks. Since then he has had to quit his job, lost his insurance, and suffers nocturnal among other sz. I work 2 jobs. This makes him stress more and have more sz. 1 job is at night. I live in fear he will smother while I am at work. I call home every hour waking him up , disrupting his sleep, causing more sz. I know, I gotta learn to set limits and leave the rest in God's hands. But it's so hard to let go of what little control I have left over our lives. I thought about getting him one of those special pillows. Has anyone ever used those? Do they work? Anyway, I know my point was lost long ago, but it was that I didn't know he had E and because of his age just thought it might be a possibility. I'm sure no one wants to hear that, but since I thought it was one isolated incident, one should look everywhere for a cause.