Where is the most embarrassing place you have fallen asleep?

Ouch! I'm sure that did hurt, especially if the floor was tiled. - Lori (Team Member)

I am more in control of some of the symptoms. I’m not more in control (or in control) of other symptoms. Meds help with some of them. Meds have never helped me be able to control when I need to go to sleep (all the ten thousand obligations in the world or in daily life) or when I wake (for all those ten thousand obligations). I’m been playing catch up every day all my life. It’s the only life I’ve ever known. I don’t know what it would be like to go to sleep at 10pm and wake at 6am. My mom kind of had to torture me to get me out of bed and to the shower. Then, I’d lay down in the shower and sleep until she was banging on the door and kind of furious every day. We didn’t know about “sleep problems”. I did that for 2-3 yrs in middle/high school. I don’t think I used soap. I just slept in the shower. It was the sleepiness, Lori. It was grave. That’s what I’ve compared going to sleep to... most of my life (until CPAP started when I was about 35 yrs old). Waking was like coming out of a coma, I imagine. Before CPAP (and with PLM D/O), I’d kick and twist the bedsheets into a rope and throw the pillow into the floor... sometimes, I’d wake with my feet where my head was the night before. I did that until I was 35 yrs old. Sleep wasn’t “restorative” as the (medical) sleep people say rest is supposed to be. I didn’t do that until CPAP. Instead, I woke more tired than I ever was the night before, which I think has something to do with... why it was difficult ever to go to sleep in the pm. If someone’s tired all day and catches a second wind when the sun goes down, then who’s crawling into bed? If someone’s more alert at night, then how is it one is to go to sleep? To wake in the morning or noon sleepy? To wake sleepier? To fall asleep in class and wake to the empty room after the loud bells rang? Head on the desk. Slobber on the surface. Teacher at her desk. Grading schoolwork. I got some curious looks from those who liked me and cared for me (some teachers). They were like, “This 10 yr old's acting hungover.” They couldn’t do much. There weren’t... my problems weren’t recognized to be “medical” until I was grown. We had doctors, but "sleep doctors” weren’t much known or accessed where or when I grew up. I don’t miss those years I had no help. Frankly, I don’t remember a lot of things well. I’m too young not to remember many things people mention sometimes, but I don’t. Nobody can change the past, so, I’ve accepted it all went untreated for so long and try to stay engaged in treatment today even if it’s mainly meds... I do the best I can, try to be healthy, and happy. I was 20 yrs old until I realized health and happiness required effort, at least from me. Until I was 35 yrs old, I coped the best I could (cigarettes and coffee--both mild stimulants though not what doctors prescribe). I didn’t realize then, but that’s what I was doing. I mean pots of coffee. It’s all I drank to get through the day until I gave in and only took swing-shift or night jobs. Trying to work early drove me crazy every day. It was a daily cycle of stress related to sleep and waking. Whenever I tried to do it, it always got out of hand and worse. The poor quality of rest until I was 35 yrs old made it so that I slept 10-12 hrs routinely if left to myself (through alarms and all). Two times in my life I’ve slept 15 hrs, woke to use the restroom, then went back to sleep for 15 more hours. That’s over a whole day. I took naps growing up but didn’t know... they were symptoms of some serious sleep-related problems. They weren’t restorative naps. They were uncontrollable, ill-timed, and not the “power naps” I’ve so envied when I hear about them. They might be an hour or three hours. That must be more than a “nap”. It was as bad as a whole night’s sleep, though. I'd wake with headaches, the grogginess. I mean, that’s not why people take “naps”. Then, if I “napped,” then it was even more difficult to try to go to sleep at night. I resorted to staying up all night if I had to do it (to be awake at early hours if there was something I just could not miss). Life is full of these early events. I had no choice, really, if I needed to attend. After I was grown, a girlfriend helped from time to time. She might elbow me after the alarms had no effect. Physical contact helped get my attention. Persistence helped break through the disorientation of waking. It was necessary for me or else I’d talk out of my head until the person gave up, and then I was asleep again. One girlfriend screamed that I was “retarded” after I didn’t wake to the alarms. It’s a word I hate hearing used in that way. I know what she meant. We didn’t work out. I must be okay. She must have had problems too to be so mean waking up. If I was mean waking up, then I’d go back to sleep so maybe I could wake up nicer. Some people need some compassion in their lives. Especially with someone you’re laying down to go to sleep with at night. I couldn’t take all that though. The interpersonal conflict. I’m not trying to wash dishes and have somebody come up and start screaming at me. That’s not gonna help anybody’s problems. Anyway, some have been more understanding or aware, maybe, that the brain and circadian rhythm are complex manifestations. Not everybody’s the same. That’s a good thing. It makes life interesting. When people are not able to control these processes, when it’s disruptive to one’s whole life, then it’s necessary to go for help somehow. I’ve had to work for it. I didn’t like how I wrote something about “going back to the specialists, what a hassle,” or something like that. It sounds unappreciative, you know? It’s a privilege. A lot of people don’t have health insurance. A lot of people (in other countries) don’t have medical care of any kind, much less specialists for sleep or the brain. It hit my conscience when I re-read that carelessly worded sentence or sentiment or whatever. I’m grateful to get to go to the doctor and have one send me to specialists. My point was I expect too much from one doctor. They don’t know everything. There’s too much to know. It was responsible for my new doctor to farm me out. That’s fair. It was probably the best thing she could have done with me. I’m not doing just great in terms of.. well, I could do better, I think, and if she doesn’t know how to make it happen, then maybe the specialists will. Symptom control: sleep timing is not under control on the front or back end. Medication helps the EDSleepiness. Medication in conjunction with staying on my feet all day long in the heat and on task doing something... helps me not to fall asleep. Postponing eating helps me not get sleepy. It’s not good to skip meals (migraine trigger), but it’s a measure I take not to get sleepy. If I eat, then it’s not much and sometimes “light” (salad or carrot or cucumber). When the food’s not heavy, then I can run back out and keep working. I cope like this, in different ways. If I’m not at work, a few days a week, then I’m constantly doing something interesting to me (so my mind is engaged). I have a few of those hobbies. Chores and errands work their way in on my off days. I can’t manage many when I work. I go late and work late. I drive a lot to and from work. It’s just what I’m doing right now (to make a living and have health insurance). I’ve been on the verge of quitting for five years (as soon as I started), but I haven’t yet. I never planned anything until I was out of college and needed to work. Then, I did the best I could with some guidance from family and people saw in me good qualities I may not have realized. They helped me get started working and one even encouraged me to go to the doctor after I got a migraine and she heard me puking in her guest shower for a few hours. Sometimes, other people are necessary to point out that something’s not normal or... not necessary to go through without seeking help. It was the same with sleep. A job sent me for a polysomnography when I was 35 yrs old. No doctor ever referred me to one so much as an employer because they liked me, and I did the work of two people. I just couldn’t show up on time (wake up and go) especially their all-so-important 7am Saturday “team meetings”. There was no chance. I told them before they hired me I couldn’t do those things, but after write-ups and “probations” (like I was getting released from prison) they sent me for the test. It was the best thing that happened in my adult life. I stopped twisting sheets, knocking pillows, and waking up “backwards” in bed. I stopped sleeping 10-12 hrs and manage on about 6 hrs right now. I hear alarms now even if I sometimes turn them off over and over and don’t really remember it. I still wake sometimes with the dreams (narcolepsy clarified they are hallucinations more intense than other people’s dreams). They were also more frequent before CPAP, but I still wake from them sometimes. I never had nightmares. I feel for those I see writing about them. I had a few, but usually my dreams were beautiful. Things happened in them. I felt good in them. It was like a parallel life or something, a realm in which things I wanted to happen happened. I wasn’t in control, but all these fulfilling scenes came to unfold. I would wake and feel better or feel more than maybe I allowed myself to feel in waking life. It was like a reminder (waking from those “dreams”) that life is full of feeling (it is sentient). There’s thought and thinking, but beneath it all is this current or the flowing of feeling. We don’t have to be obsessed by it, or forsake thought, but it’s there. It’s okay. Whatever people express or don’t, I’m under the impression all mammals feel. Our situation as humans is complex because we think too, and we’re aware of ourselves to a greater or lesser extent. I’ve tried for a long time to be more aware. I think that is necessary for symptom-control or “regulation” anyway, more self-regulation of different kinds. Sleep paralysis: that’s better with CPAP too. It doesn’t go on as long. There’s not drool on my face. I don’t stare at the ceiling for so long, or the alarm clock. I’m not sure un-afflicted people can fathom being able to tune out alarm clocks set at max-volume to go off for like an hour in ten-minute increments. This I still do. It would drive somebody else crazy. I’ve been a little isolated for a long time, but I’ve never lost touch with a few good friends and my nuclear family, all still living. I think my dad is the same as me (we’ve talked about it), but he’s always been married to somebody lol She was able to get his attention. He’s been a napper all his life. So was his father. I thought it was normal. I thought all the snoring was normal. I don’t think it’s all normal anymore. It’s how they were, and doctors didn’t send me for a polysomnography. A job sent me for it because they didn’t want to fire me. If they’d wanted to fire me, then it would have been easy. The CPAP helped with central apnea events (and some of the symtoms: PLM D/O and hypersomnia, basically). The medication prescribed for it was to treat EDS in spite of religious CPAP use (rare among their apnea patients, they tell me). I fell asleep in the neurologist’s office about 10 yrs ago waiting for her to come into the little room. She sent me to the sleep MD for medicine. It’s helped some, but it’s not great. It’s better than nothing. I started taking half of what they gave me because I talked and wrote too much... a few weeks into it. Eventually, a doctor started prescribing only what I told them I took. I thought I could tell... “conversations” were just me talking, and I wouldn’t shut up, so I didn’t like that. With writing, it’s harder to shut up, and it’s not in person, so... I don’t get any cues or feel awkward. Writing was always a coping skill (I just didn’t know). I’ve tapered off over the years but realized it helps me to verbalize much that I can’t beforehand. Writing forces me to think and find the words I mean to say. It might be the “thought” element that makes it productive for me. Then, a conversation’s better (when I go to the doctor, for example) because I can verbalize what I might not be able to say otherwise. They rely on what people tell them to some extent. They need to hear from you, you know (patients). If you don’t tell them, then how can they know? Voice your concerns. I’ve bombarded them with words sometimes, and I see them shrink into their shells. That doesn’t help me or help them do a good job. The old forest for the trees adage... I’ve sometimes bombarded them with the forest instead of prioritizing the trees... with which they might help me. I started making short lists to cover with my last doctor. It helped me to be organized and to cover the main things when I went to see her. I forgot to do it when I went to my new doctor last week. I could see her go from wanting to make a good impression to seeming almost frightened. I’m not very comfortable being a patient, but I know I need to be one. I am one. Most people are one whether due to emergencies or just symptoms that are disruptive to different aspects of life (social, personal, professional). Yes, life has been disrupted for most of mine, but it got better about 10 yrs ago. It took a long, long time. I bet I took 25 different psychiatric medications before I ever had a polysomnography. Sleep-related disruptions (and migraine attacks) were the main grievance I had every time I went to the doctor. None sent me for a study. Maybe, there weren’t “Sleep MDs” and polysomnographies where and when they grew up either. Maybe,.. I don’t know how it went on so long. I’m just glad it’s over. I’m better. It’s not ideal, but there’s progress. I can live with that. The medicine they gave me for EDS related to people who are still sleepy all day even after using CPAP (after falling asleep waiting for a neurologist) is one of the same medications they give people today for narcolepsy. After hearing about some symptoms, a doctor wisely added the diagnosis 3-4 yrs ago. I didn’t know much about it myself, so when I began to read about it, I was caught, you know? My life of dreams weren’t like other people’s dreams. They were “hallucinations,” but those are okay so long as you remember it’s all the product of your own mind, between sleep and waking, and it’s just that it takes some minds a little longer to leave the dreams and get oriented to the room... different worlds. I’m not scared by the word hallucinations, though, even if I prefer dreams. The sleep paralysis: I thought that was normal until I was 35 yrs old, and it’s part of why I hated the idea of going to sleep (if that’s what waking was like on the other side of it). No, I was more tired when I woke than when I fell asleep. Sleep was counter-productive. It had to be done, but it did me no good in terms of “restoration”. It did teach me every day to start over and to cope the best I knew how. There was value in that, I think. I still do that. I just start out feeling a little better. You asked a good question, Lori. Sorry to go on so long. Your time is precious. Thanks for supporting all these (us) people on this forum. I see what you do, some of it here anyway. We appreciate it. I know I’m not alone. PS My mom feels bad for... not getting me help when I was a kid. They told her in Kindergarten I was falling asleep and not talking to them when they asked me questions if I was awake but only stared at them. I don’t really remember that. I remember staring at a fishbowl full of marbles as they talked about this EDS symptom (when I was 4-5 yrs old). They switched me to “afternoon session,” and I guess I’ve been switched all my life and at times the “night session”. We all coped. My mother helped me. I try to ease her mind and let her know nobody (around where we lived) knew about sleep diagnoses, PLM D/O, narcolepsy, none of these. Maybe, if I’d grown up in a big city, then they would’ve shuffled me to the Sleep MD 30 yrs sooner. Who can say? As it is,.. we all kind of wake up today if we get to wake up at all. Can’t regret whatever life is gone already. It won’t come back. It won’t really help either. I was resentful for a while (that I was 35 yrs old before I had a sleep study). I’m not anymore. I have ten years of breathing continuous oxygen as I sleep regaredless of what my brain is telling me respiratory system to do or not do. I don’t destroy my bed each night. It’s way easier to make the bed. These are advances from my baseline with no CPAP and medicine. Sorry to criss-cross topics. These co-morbid (co-occurring is a better term) conditions overlap sometimes... much is still a mystery in the brain and CNS. It’s a good thing, maybe, to a point. We can still be in awe. We need to be. I’m really glad people have made advances of all kinds (to help people with problems of all kinds). I hope people try to help themselves. If I didn’t, then I’d be too miserable to do anything. I couldn’t function in different ways. I don’t want to know what life is like without... treatment anymore... as long as it’s better than life without it. Communicating is not easy. I would like people to focus on being the best communicators they can be when they go to the doctors. It helps the doctors do better. They’re not mind-readers. They can’t see what you feel, think, or the struggles you go through maybe every day. They don’t know. You may be the only one who can tell them or try to describe it. Prioritize. Prepare somewhat. Show up. Make a list, even. Whatever helps you communicate more clearly or fully. I’m probably out of characters. I deserve it. Thanks for writing back! My support is limited, but it’s also real and authentic, so as few of thowe people as there are, I’m grateful for each and all of them. I don’t talk as much in person. I like to ask questions and listen to people. I learn from them. I Like your forum. I’m glad it exists. I think I wrote the other day because I got an email notice, I was stressed, I just visited the new doctor, and she’s changing all these meds even if she just met me. Sometimes, we get attached to a regimen even if it isn’t the best one. Maybe, it’s not. I’m keeping her, though. If it’s a disaster then she’ll have to deal with the consequences with me and work something out, I don’t know. I tried to write to her too, but their “portal” won’t show me my message sent. I don’t think it did. I was under the character limit and everything. Lame. Thanks, Lori.

Hi . Yours has been quite a journey. I am glad you are able to emphasize with your mother's lack of action when you were youngand that you don't blame her for the lack of treatment. I have a relative who showed signs of mental illness at age 13 and was undiagnosed until he was in his 20s. His mother was angry with herself for years because she blamed his behavior on drugs, but she was too close to him to see the bigger picture and mental illness in children was simply not well understood then. He doesn't blame her, but she carried that self-blame with her all her life. I hope your words have eased your mother's mind and your own and that she is able to let that burden go.
You will find several other members here who use CPAP. It's good you got evaluated. Too often, people with narcolepsy blame all their fatigue on their disease when there might be other factors making it worse. In your case, that was sleep apnea. By treating the sleep apnea, you are significantly reducing your risk of stroke or heart attack as well as improving your sleep quality. So I'm glad you have that CPAP.

I hope the direction your new doctor is taking you in is the right one. Keep us posted, if you don't mind. Thinking of you. - Lori (Team Member)

How scary, . Did someone find you on the ground or did you wake up and continue on your own? - Lori (Team Member)