Thank you all for your input. I guess really deep down I know I'm choiceless, but it's a hard emotional commitment for me to make. And yes, the full rigid mask I had in the hospital did hurt my face. I'm very fair. The marks once it was taken off remained for a very long time. I'm not sure how long I wore it either. I haven't had active zits now but as a teen and well into my 20's I had polycystic acne, had a face peal in my 30's removing most of the scars, but I wonder if I'm still prone to pimples. I take really good care of my skin, have all of my life, after going through the horrors of polycystic acne but sometimes that's just not enough. Wearing CPAP in the hospital it wasn't for night time sleeping but weaning out of a sedation coma or a very long status seizure where I had to have so many sedatives to stop the seizure, it depressed my respirations too much or my seizure was so severe I stopped breathing and had to be intubated and then was weaned onto CPAP. They haven't done that often though, I don't think. The key word here is "think", which I'm not really able to do well after one of these seiges so my personal medical history account I have to rely on my family.All day today I was going to call my respiratory therapist, but didn't do it then I ran into him at the bank! YIKES! I have a script for the CPAP now. I called my doctor to get a script for the BiCAP also, just so I could try both.Thank you all for your shared experiences. It was really interesting to me how Classy, Will and I seem to feel the same all the time. And, yes, I do know that difference between tired and sleepy. I so often feel drugged out, tire easily, have to pace myself, but have problems many nights going to sleep because I'm not sleepy enough. Made total sense to me :)Classy I'm just going to give you my opinion, and please realize that is all it is, not medical gospel, okay? I assume you're referring to your EEG and MRI as rule out testing? IOW when you're first diagnosed and sometimes after you're diagnosed, EEGs, MRI's, CT scans, other testing will be done. In my opinion, knowledge base, EEGs are testing for one thing - brain wave patterns. MRIs or CTs are testing for another thing - physical abnormalities in the brain. Some people have epilepsy because they have a physical brain abnormality which would show up on a scan and may show up also in abnormal brain waves on an EEG. If so, that would aid your physician in treating your epilepsy. For instance if you're seizing because you have a brain tumor or a cyst? That'd need to be known, attended to. Seizures might have been the symptom that lead to that discovery then by an MRI. Some people have epilepsy for other reasons and can have an abnormal EEG, or abnormal brain waves, but show no physical abnormality on a scan because that isn't the root of their problem. In truth a brain researcher told me several years ago that many forms of epilepsy, and maybe it's most, I'm not sure, the total reason why we seize isn't known unless there is a significant brain abnormality. Or, the researcher said, they can "map" abnormal electrochemical activity, but it's not known why that's occuring, which causes a seizure. In myself? When I was first diagnosed I had the standard "rule out" testing: MRI scan, EEG, blood testing, neuropsych eval. Everything was normal except for my EEG, which showed spiking without a seizure. In my case? I clearly have genetic generalized seizures, with 7 family members who also have generalized epilepsy. I developed TLE's though from a head injury. Also, some people have seizures but have normal appearing EEGs. Now I THINK I'm right about all of this but even though I'm an RN? I'm rather neurologically stupid and the first to admit it. I hope though that helped answer that question.In answer to your other question? I would contact your contact, whoever wrote to you should have given a phone number, and ask them what medical records they want. There is also an 800 number to call that is supposed to be able to answer all of these questions and on most of my correspondence from Social SEcurity that 1-800 number is usually on there. It's also probably on the Social Security site. I've called them a lot. I don't find them able to answer more than the general questions but they might be able to answer this question of yours. I didn't have to gather my records. My case worker did it. But I know in my case she gathered records only pertaining to my disabilities, I have 3, because I'd moved to that area, immediately got epilepsy, discovered lung lesions, my asthma went bonkers, so ALL of my medical care revolved around these problems. Thus ALL of my medical records she would have known about, and gathered would have reflected the health problems I have. I don't think she even knew where I'd moved from where I had the regular medical care without all these problems, so much, I guess. Gosh I sound so ILL don't I? Well in truth this winter has really been frightful. I've had liver failure, which is now resolving, at least for now, and preliminarily I'm thought to have chronic serum hepatitus. Pending results of testing still. I've had pancreatitus. Right now miserable shingles from nerves I'm told, and I can sure verify THAT! But on the other hand? I exercise every day. I laugh, sing, cook up a storm, go fishing and hunting, hire out for dog training, love living and also veg out a lot, way too much for my tastes. I am a champeen napper! I do tend now to be a sprinter, not a long distance runner as I always was before. I use to always run at such a high energy level, all the time. Then about once every few weeks I'd collapse into bed and sleep 15 hours or more. Recharged again and up and going again. Course I was younger too. I was a midwife, thus was called all hours of the day and night. I also worked night shifts at a hospital. I ran a very busy nursing consulting business and I had 11 children, 4 of whom have significant health problems. I think I got into a groove where I just went and went like a Duracell battery, I was so darned tired all the time it felt normal. I didn't expect to feel differently. I actually think the times I wasn't tired? It made me feel nervous. I wonder if that's true? During those years someone labeled me, my kids caught onto it and called me "Sparky" instead of mommy. Odd ball family humor I guess. Friends have told me I probably have adult ADHD and I figure - thank God, I probably NEED IT! hehe. My mind can be going a million miles an hour but the old bod just isn't keeping up any longer. But gosh when you seize all night? That's like working in your blasted sleep! I hate waking up all the time feeling like sludge. Then too we're all fighting post ictal all the next day. If I may so say? My medical opinion is? Epilepsy? Sucks. Even though this sleep problem isn't new, it's worsened, seeing a pulmonologist so much she's investigated all of this. I've never complained about it to anyone else before. It's been noted during my many hospitalizations but I was hospitalized for acute unrelated problems, mainly for severe seizure trouble, and I thought it'd never been mentioned to me but my daughter who goes to as many appointments with me as she can tells me, not so. I zone out when my epileptologist talks about things I don't care to hear, to be honest. But you know IF this would reduce my sz's. Wearing CPAP? That truly gives me some drive, push, to overcome my obstinancy about trying it. I seize so much? I honestly would hesitate to even post it here. I wonder if I'd be believed. Thanks all.GretchenPS This is a funny. Stores are such an ambush for me. I have drop attacks and I'm wildly photoconvulsive and most stores have something that can drop me. My husband had this grand idea after a drop, which people recover fairly rapidly from it APPEARS, after one drop I had in the grocery I should get one of those motorized scooters, so I could sit down. Wanna know how I drove post ictal? LOL - well if you EVER need help finding something or want employee assistance? Drive a motorized scooter PI. You'll have LOTS of employees, right at your side!Gretchen

I have sleep adema or how ever you spell it.. i sleep to hard aparentley when i go to sleep dont worry about waking me up unless you have water or screaming.. i stay sleepy dring the day and i can be really mean to people.. well thought i would say my bit on it