Nocturnal seizures? New here

Hello and Welcome - I don't

Submitted by gretchen1 on Sun, 2006-06-04 - 00:37

Hello and Welcome - I don't have the ability to answer all of your questions, any of them with any authority for that matter but I will share experiences, things in my life and lives of those in my family who have E. Sleep Disorder - I have several sleep disorders and have been extensively tested both at home and in two different labs. When you say they only tested you for sleep apnea? I'll bet like me, if you were wired to the hilt, could barely even roll over in bed or the wires would get tangled, like me, many many functions of your body were being tested. Like did they put on EKG pads, an oxymeter checking your blood saturations, obviously you had an EEG wired on and usually, but a few times I think on me this got missed, I give a urine and blood specimen before I go to the sleep room. I got a tremendous amount of information both from the two sleep labs I was tested by, 3 nights each time, and the testing done in my home. A lot of the information given to me was this or that was normal functioning as you sleep. Such as my cardiac status was normal. Really? It's comforting to know what's right with me, as well as what's wrong. But I've found at times in medicine we only hear the things that are wrong with us, not what is right. My suggestion to you then and what I do frequently now, is request your medical records of that sleep study. It might be or not you get new information but I've found when I have lingering questions? I start worrying. I have this mountain of medical records but it is me, and I don't like anyone picking and choosing what I get to know because maybe they're busy or whatever. I want to know all of it. EEG blank spot - This is just a comment but I found that very interesting what you said about that because my son has had epilepsy since he was an infant. He also has severe asthma, Tourettes, and severe ADHD but medications have helped him considerably with all of these things but he has to be very vigilant to keep his health status good. Up until the age of 6 years, high on the occipital area they told me it was blank. They tried to show me but I couldn't read an EEG if my life depended upon it. At that time we thought, or maybe it was true, he only had generalized sz's and I was told then it was likely that he had this blank spot because of either (1) he was born prematurely and that area still hadn't caught up OR (2) this was the area where his sz's started. His next EEG was about 2 years later when we switched neuro's, and this neuro wasn't HMO demanded but one I chose knowing he was good, in fact at the age of 29 my son still see's him, but he said whoever read that EEG and gave us those "answers" didn't know what they were doing. He said they were bad tracings, and the conclusions couldn't be accurate because of that or he might have said they were read wrong too, that was long ago, I can't remember for sure and he ignored them. His EEG interpretation at that time, about 8 years of age, didn't show this blank spot. He also told me that EEG's and I've heard this since from others in neurology are interpretable. IOW as our epileptologist always refers to our EEGs now and what he see's on them, he'll say "...this suggests...". It's his interpretation. They're not black and white is the opinion I've gotten. Nocturnal sz's - I have these. I seem to go through periods where I'll have more sz activity of one kind for awhile, then another kind will be more frequent plus I'm guessing on this but I think I'm now pretty tuned in to how I feel,what I do, if I'm having nocturnal sz's. I was diagnosed with E the first time to my previous knowledge when I was 49, I think, my memory is horrid. I had heard I had encephalitis as a child but didn't remember it so I dug up my pediatric records and to my gigantic surprise found out I had been diagnosed with epilepsy when I was 7, treated for 10 months and I remembered taking little white pills and not feeling so weird all the time. But my mother insisted it says on my medical records it be called something else. I feel because epilepsy had some dangerous bigotry in the '50's. She was worried. But she also had me taken off phenobarbitol and I remember all those things coming back.Only to say I've probably always had this since my early life, it just got so bad when I was 49 it was easily diagnosable, again (sheesh). So that's my history. When I was 49 I had my first known t/c that lasted 2 hours and continued to sz on than off for 5 days. Also a positive EEG so I was easily diagnosed is my point plus I have a rich family hx of E. After that it was like the dam burst. I started feeling, smelling, seeing, tasting all these weird things. I felt like I was a power plant of electricity, jerked constantly, was dropping like a rock every day - you get the picture. IOW I got to the point I just accepted everything abnormally happening to me like -well there goes another thing. It was hitting me so suddenly, fast and hard it almost got humorous between my husband and I. Like once I allowed dinner to burn on the stove sure I was having a simple partial and only thought I smelled something burning or I went through this big period of time out of the corner of my vision I'd see a huge black bird about to fly at me and I'd duck, let out a little squeal in public places. That one did get a little humorous if you have a warped sense of humor I guess like we do, or you laugh or cry. Plus I've had a lot of children, know my bladder is prolapsed, so when I would suddenly wake up because I was wetting the bed, I assumed it was my bladder prolapse. I was so postictal it took me quite awhile to remember the next day I could barely get my legs under me or couldn't at all to get to the bathroom. Sometimes I could get on my feet but would make the wrong turn, couldn't even find the bathroom plus I couldn't stop going, and normally I could. But I'm not always incontinent with nocturnals. With most I'm not but that was my first clue. I also wondered why on some days I seemed to have decent energy, felt fine and on other days I just can not get any steam going, I'm very tired, my fingers and toes really hurt, often the back of my neck, jaws, lower back and I'm not a tongue biter, I chew on my cheek which is now I know a BIG clue. The areas where I have pain my husband tells me I posture those areas in extreme positions during a tonic sz which then I recognized but not at that time as happening in my sleep. I'd take multiple naps, sometimes have unexplained for me depression. I knew some people had sz's in their sleep but I assumed if that happened the bed linens would look like it, mine didn't look different, and then my doctor's EMU told me bed linens don't usually look thrashed around in. Sometimes I don't have the pain thing tho. My current is I'm having CPs, getting up and out of bed or sitting up and talking nonsense. I don't hurt after those but they are sz's. Believe me I wake up the whole house, everyone definitely knows when I've had a nocturnal CP. So,from a VEEG I had done and family observation I've found out I have nonconvulsive sz's in my sleep too, so naturally I don't hurt when I wake up but I do usually feel lethargic, crudy, mildly depressed. That tired, crudy, depressed feelings for me usually wears off late afternoon but maybe that's just me too. Anyway about a year after my "bladder prolapse" became a problem, someone put up a thread asking if anyone else was incontinent during their nocturnal sz's and went on to describe just how I felt the next day too. I was really shocked but it all started making sense too. I will say once in awhile I'll be incontinent during a status tonic sz if I was awake when it started but other than nocturnals that's the only time I'm incontinent. I don't have nocturnals every night. If I'm tense or stressed, for me, I'll tend to have more than one a night. But really all I can offer you here are my experiences. I had TMJ so severely when I was younger I had to have surgery on my jaw joints. I'd wake up in the morning after a night of gritting my teeth, which no one heard I guess, and I'd hurt in many places from just that. I would say if you're wondering if you're having nocturnals a VEEG test in my experience anyway would be appropriate. Also you could consider an AEEG or ambulatory EEG, an EEG you wear usually for 1-3 days. Those are for me really hot, itchy and often put on way too tight still you don't have to go in the hospital. Another thought I had was once I was put on an antibiotic that gave me one night terror after the other all night long. I'd never had a night terror, had no idea what was wrong in my emotional life to be causing such havoc in my sleep was my thought for 5 nights until I couldn't take it any longer, called my doctor. I didn't know antibiotics could do such a thing, this was new too and wasn't well known at that time to produce night terrors. But it does they've now found out to so many people few are ever prescribed it. However just that made me wake up every morning I was on that blasted drug sore all over, sweaty, worn out, my bed linens were everywhere and I was very depressed. I guess what I'm trying to demonstrate is self analyzed symptoms alone I don't think are reliable indicators you're having nocturnal sz's. On the other hand if you are having nocturnals your doctor should know that too. My sleep studies showed mine but also showed my oxygen saturations dropped into the high 40% and that's killing brain cells. After that was found out immediately my dosage times and amounts were changed. My 02 sats tend to drop during a sz but not reliably that low every time if they occur when I'm awake. My gosh you've had it rough lady and you really sound so upbeat. I'm having a rough period of my life right now with my husband's health which is a daily gigantic worry. I feel like I have to be really careful how I post so I don't sound very depressing or snappy. I applaud you. Gretchen