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  1. Has anyone had an encounter with an incubus or succubus? I have had an encounter with an incubus 3 times so far and have always wondered if it is really as uncommon as it seems. I've read articles and explanations online, but I don't think I've read any personal experiences so I'm just curious (and kind of hoping I'm not alone lol).
  2. Hello, Some background: I'm a 40 year old man living in the UK. I am currently supporting my closest friends in what can only be described as a horrible experience for them, and emotions are very high. It's all very upsetting, which is what leads me to this post in an way. I am not seeking advice on that directly, though, to be clear. For as long as I remember, when I cry I...well, my body kinda gives up (and a bit when I laugh, too) for a few seconds, quite slowly... It starts with my head/neck, then my face/arms and then, at it's worse (a full on sob) my legs join in. I'm not asleep, nor do 'I' change inside at all, I just loose control. Most of the time it was no problem really, as I wasn't much of a sobber, y'know? But I'm *really noticing it at the moment with what's going on...The extent of it, from top of my body to bottom, is based upon how upset I am. Crying at a sad/soppy film, but not being really hurt or truly upset, only makes my arms a bit limp and heavy, and mebbe some in my neck, and I'm not bothered by that too much. But right now, I have to cry this stuff out when I leave (I have my own family to look after, I need to release it)...it's, well, I flop (slowly, though, I'm not passing out as such, it's just my body). Also, it's happening a a bit...randomly, and right now when I laugh it's more intense. I need to sit down or I...not wobble...sag. I just want to make clear it's not...not emotion, directly, putting me on the floor. It feels physical. I can't choose to ignore it. As it's very noticeable at the moment. People see it. I don't like that. My ex (of 15 years) and my girlfriend (of 5) sat me down the other day. The Ex always thought I had narcolepsy, but I disagreed cos I'm an insomniac and thought you'd sleep all the time with that They said as it's worse than usual they'd had a chat and a read (I'll not comment on them gossiping about me, grrr) online. They made me read the wiki pages on cataplexy, and then narcolepsy....and it's me!!! At aged 17 I started to get what I now know to be sleep paralysis, and when I was younger it would happen 2-3 times a week (I used to party a lot, I thought it was down to that). Now it happens about that many times a month, unless I'm really tired then it's kinda guaranteed. Let's just say I'm not a fan of it, but it's just normal to me - although no amount of understanding/knowledge can get rid the fear and/or 'presence of other'(it sounds crazy) when I'm actually in it. I hadn't connected them at all. I'm quite surprised at my own ignorance...I've never mentioned it to my doctor. I'm not sure I want to. Is there anything I can do to to make it...be less in the way when times are hard? I have things to do! What do I need to do to stop this meat-bag I live in going floppy? Any advice would be appreciated.
  3. First post... About me: 42 year old female in WA state between Tacoma / Seattle. 16 year old Daughter diagnosed with Narcolepsy. My mom, other older daughter(23) and son (21) have symptoms as well and will likely be tested soon. My symptoms started around age 4/5 (confirmed by my parents) but my self-awareness that "something" was just not "right" started at age 6-7. Fell out of a 2 story window at age 4 and hit by a Jeep as a pedestrian at age 5 when walking home from school. Sleepwalking, night terrors, microsleeps /zoning out, excessive daytime sleepiness, falling asleep, automatic behavior and memory problems plagued my school years. I was tested at age 7 for epilepsy but that was negative and after that it was just swept under the rug. Denial by my parents was in full swing. Somehow, someway I was a good student but the struggle was daily and my life became riddled with anxiety. Why couldn't I be normal? I knew I was not normal, but on the other hand what was normal? I believe I have a genetic familial case that was triggered by my head trauma. My quest to figure out WTF was causing a laundry list of health problems started at age 20. I was diagnosed over the years with: Bipolar 2, A.D.D., Depression, Anxiety, PTSD, Fatigue, Phobias, P.O.T.S., Syncope and Chronic Idiopathic Urticaria. Being on medicines always left me worse than unmedicated. I felt CRAZY and was treated like I was a hypochondriac / nut case. Now I know I am neither! 20 plus doctors never asked me about my sleep... I was always told I was tired or depressed because of my job, life, 3 kids etc... Same story as 99% of you awesome people on here... but now I finally fit in and I am no longer a square peg trying to fit in a round hole! Road to Diagnosis: I was diagnosed with Narcolepsy with Cataplexy recently (April 2017) strangely in part because my teen daughter was diagnosed. My daughter has been sleeping a ton for the last few years, couldn't wake up to alarms etc... I thought this was normal because that was my life growing up. Hindsight is SO 20/20! A few months back we started having in-depth conversations and she started to describe these things that she was experiencing... hearing this from her took my breath away. Not because of what she was describing... it was that she was narrating my life! Holy Crap! How is she in my head? Surreal! She was describing things that I too have experienced and it was eerily similar. I now know after much research these things are Hypnagogic Hallucinations and Sleep Paralysis. I now also know this quirky weakness in my arms and hands when I laugh is Cataplexy... still blows my mind to know that this is what it is. How have I never stumbled on this in all my years of interneting? The research queen that I am, started researching feverishly and Narcolepsy fit all her symptoms... and mine. She eventually had a sleep study and had 2 SOREMPS but the other 2 naps were really close to being counted but didn't qualify as events. Diagnosis: Narcolepsy without Cataplexy (I believe she does have mild cataplexy though) Initial Sleep Neurologist Appointment: Amazing doc at Virginia Mason (Dr. B). He is certain I have Narcolepsy with Cataplexy from the get go and says it sounds textbook but we have to rule out apnea etc. I am at this point certain as well. I show him video we have of my Cataplexy that occurred after waking from a very emotional bad dream. He says we have to do the PSG and MSLT so I can be put on Xyrem. I understand why and that this is how the path to diagnosis works. Orders the sleep study. Off I go... I thought this was going to be easy because of my clear Cataplexy that I have had since about first / second grade. Boy was I wrong. Sleep Study: Now let's get to my sleep study. It was at Virginia Mason in Seattle (April 2017). It felt like everything went wrong in some way: I arrived at 7:30pm and they were supposed to have me wired and in bed at 9:30 as I normally go to bed at 9 pm. But... they were down a technician (ok, I can deal) so they said they would be in as soon as they can. Then they came in to tell me they had a patient who didn't have their interpreter so there was going to be even more of a delay. Anxiety started to build as I was getting very sleepy. By the time I was hooked up and put in bed it was 11:10 and by then I had a "second wind"and took forever to fall asleep. I normally sleep from 9pm to 5am as I get up early as I work at 7 am (my back pain wakes me up as well... I almost don't need an alarm clock). They made me stay in bed till 7:30am, I woke up at 5 am like clockwork and laid there wide awake but groggy with morning back pain that I have very regularly but I couldn't get up unless I was going to the bathroom. Good times! Room was noisy and not soundproof or anywhere close. The room for the technicians was right across from my room and I heard the door close loudly every time they entered and exited that room. Also, the ancient radiator heater in my room would cause expansion and contraction of the wall decorations that were screwed into the wall above the heater which would cause tapping sounds each time the heater went on or off. I could also hear the toilets in other rooms flushing. They are SO loud and must use 20 gallons of water per flush. When I flushed the toilet the first time I knew I would not flush it again during the night as I didn't want to wake up the person in the room next to me. Next thing was they fed me my two meals right before my naps. Woke up at 7:30 am and didn't get my food until around 8:30 and was to take the first nap at 9:00am. They apologised that my food was late yet my second meal was really late as well. If you are a Sleep Study Technician or Doc please read ------> Food needs to be ready to go right when your patient is scheduled to wake up from a nap, not 30 min before they have to sleep. Mental note and a tip to others: If I have to do the PSG and MSLT again I will bring a cooler to have my own food available in my room. I will eat very simple foods and will eat a small quantity. Trying to nap with a full stomach trying to digest food can keep some of us awake. Each time I napped the tech asked me a few questions. I asked him in reply "Did I sleep?" each time and he would tell me. I know now that they shouldn't say a word and now I know why... performance anxiety! Next time I will explicitly tell them not to tell me anything. Last gripe... not being allowed to leave my room and nothing to do. My daughters sleep center (Multicare) had a small lounge they could go hang out in in between naps. If my sleep center had a lounge I think getting out of my room to maybe go have some conversation, play cards etc... with others can be a great way to feel a bit normal so that I'm not sitting in my room trying to figure out what to do to not fall asleep. The rooms have nothing but a t.v, bed, recliner and a table. Heck... give me some laundry to fold... let me go for a stroll... or some dishes to wash. Board games / playing cards would be an awesome diversion! Sleep Study Results: Overnight PSG normal but fragmented no R.E.M. MSLT, slept in all 5 naps... only one SOREMP though... Doctor says test results clearly show fragmented sleep, no abnormal apnea, no RLS etc... and being able to nap quickly in all 5 naps does point to Narcolepsy because of my other symptoms (HH, SP and Cataplexy) but because I only had one SOREMP the insurance won't accept a diagnosis of Narcolepsy to get Xyrem, Provigil or Nuvigil. My other 4 naps the times didn't fit in the little SOREMP "box", just outside the number range... sigh! Doctor says he knows it's Narcolepsy and that people with Cataplexy for some reason can have trouble registering 2 SOREMPS especially when diagnosed later in life and that I should not worry... (Ok! I won't worry a bit!) He suggests that we get another video of my Cataplexy but we need to show me before, during and after it is triggered. He suggests that I have my husband sit on me and tickle me...sounds like torture but whatever it takes right? I enlist the help of my daughter and we get the video. Doc says it's perfect and he would submit it to the insurance (Regence) with all of my other stuff. I get a email a few days later... Regence will not accept a video clearly showing Cataplexy anymore to help bolster Narcolepsy diagnosis with someone who has every symptom of Narcolepsy. He says no worry, let's do a CSF for Orexin / Hypocretin. Why this test is so hard to get done makes my brain hurt... He gives me the name of a doctor and her email at Emory and says to get "enrolled" so I can get my CSF tested. I emailed her 5 days ago and I have not heard anything back. I am not sure what it is I am to be enrolled in... a study? He mentioned Stanford but I assume that was a dead end since he directed me to Emory instead. I had read about Stanford no longer doing commercial testing so this wasn't a surprise. Has anyone has their CSF drawn in their home state that was tested at Emory? If yes, were you required to enroll in a study to have this done? If you were enrolled in a study was there a fee for the test or was it free? Has anyone else had their CSF tested this year (2017)? Where? Any other CSF information would be awesome if you have knowledge. I will travel to wherever I need to to get a definitive Narcolepsy diagnosis. There is SO much more to my story but I'll end here! Thank you for reading my novel. Diagnosed but not diagnosed... T-Plex
  4. I'm sorry this is long but please read !! So al my symptoms started 4 months ago. It started out I was just overly tired. I was waking up earlier for work bit getting same amount of sleep. At first I was just exhausted but quickly turned in to not able to keep my eyes open. Every time I blink I fall asleep. It's like my eyelids are made of lead and by the time I Can open then everything is blurry and it's so hard to focus. Then I finally focus but I need to blink again and it starts all over. I'll have jerking moments when I blink or even when eyes are open. A month later the hallucinations started. (I had had 1 sleep paralysis and 2 exploding head dreams before about 4 years ago, when I would also be walking and my knees would buckle. I wouldn't fall but my legs would feel so weak I would have to sit down. I was diagnosed with lymes disease shortly after and just always assumed they were related) any how it started out sleep paralysis here exploding head dream there. The SP I would just go back to sleep but the expl head would happen every time I tried to close my eyes. And then they'd happen together. Couldn't wake myself up out of the exploding head dream. Then i started having dreams where I was trying my hardest to stay awake. I'd be "falling" all over e place because I was so tired in my dream. Almost as if my brain was doing everything in its power to keep me awake. Then I had the weirdest thing happen to me ever. (I've always lucid dreamed idk if it's related I wake up in the morning but stay asleep so I can lucid) but this particular one I was stabbed... And felt it. I got in a "fight" with someone and they stabbed me in the shoulder. All of a sudden there was this intense burning pain in my shoulder. I started screaming in the dream and the pain started radiating all the way down my left side but felt the worst where the knife was. It was excruciating. It felt like I legit wa a stabbed. I finally woke myself up and the pain was instantly gone. Fast forwards 3 months and the sleep paralysis is out of control. I can barely close my eyes without it happening. During my naps, during my sleep, it happens when I get my sleep attacks and go to sleep. What's worse is when I finally am able to open my eyes .. I'm still paralyzed. My eyes will be wide open but I still can't scream Or move. I also hear things. Even with eyes open. People talking, walking, chewing, breaking things. But not in my mind I hear them projected like across the room. I also started getting migraines for the first time in my life. Every day for a month. Now I'm getting auditory hallucinations. When I get really tired I hear music but not when I'm wide awake. I'll be texting about it, it won't go away until I go to sleep but even then I can't sleep because it'll be the same one or 2 lines over and over and over. Like the first Line of the chorus. My newest symptom which made me go to the sleep doc - I'm having blackouts. Missing chunks of my day.. I think I am functioning while sleeping. It only lasts as long as my sleep attacks last. I'll go to the bathroom and take a 3-5 min nap and be ok afterwards. But I'll be at work- I'm taking notes, blood pressure, I'm counseling people (I'm a weight loss coach) I'm holding conversations .... But then I walk them to the door and I don't remember even sitting with them. I'm having to squint my eyes and blink one eye at a time but when someone sits down I have to act normal. Which is why the blackouts are happening then. So fast forwards to Thursday I finally went to the doc. I have a very high suspicion I have narcolepsy. However having lymes disease I am on lots of medication, but the only one I take consistently every day (or even every week.. Everything else is maybe 1x/month when I'm having a bad lymes day). However as soon as the doctor sat down he immediately went in to "I don't even know what to do with this mess" and motioned to my medicine. It's a narcotic, thc pills, and adderall (that he had an issue with apparently) which I hadn't taken in 6 months as its only for school. He immediately wrote me off like I was hypochondriac. He said I need a "psychiatrist" or a "shrink". His exact words. He wouldn't even listen to my symptoms. I tried telling him I'm only having intense hallucinations when I have the sleep attacks but he still heavily implied that I was crazy and needed a psychiatrist not a sleep doc. He said that we will test for narcolepsy to "rule it out". I have 3/4 symptoms I thought there was a pretty high chance that I had it .. But now he's making me feel like maybe I need to look elsewhere. I'm getting the sleep study done anyways but at a different doctor. Anybody think I should or is what I'm explaining something else ? Again I'm sorry it's long I just want the hallucinations to stop. I don't even want to go to sleep because they're always like demons on my chest or rapists or burglars or murderers and when I can't wake up it's terrifying. I want to know if I should give up on the sleep study and go to a Neuro or psychiatrist like he *very rudely* suggesting
  5. This is something I've experienced since the onset of my symptoms. It used to be way worse than it is now (venlafaxine reduced it to at least one episode per week to no more than one episode per month). The way goes is like this: I'll start having mild cataplexy (weak knees, mostly) during the day, only a couple of hours after taking my medications; this is unusual for me since normally my cataplexy is relatively under control during the day, and if it isn't a small nap will usually help Daytime cataplexy gradually increases in frequency and, to a degree, severity (no full body collapse, but I have to stop walking and take deep breaths). At this point I know I have to lie down ASAP Once I lie down, everything is fine at first. Then, after a few minutes, total sleep paralysis takes over. I can't even take deep breaths. I'm 100% lucid at this point, no hallucinations. After a couple of minutes, the hypnogognic hallucinations set in. When I fully fall asleep I have very vivid/strange dreams (I have odd dreams every night; but these take it to an entirely new level). I wake up once or twice during this ordeal, but when I do I just know in my head that it isn't over. So I fall asleep again. These episodes last anywhere from 30-90 minutes. Afterwards frequent daytime cataplexy goes away (until the next episode, that is) I've spent a lot of time browsing narcolepsy forums. I've NEVER heard anyone describe something like this. Am I the only one this happens to? Does anyone else out there experience this?
  6. I started Modafinil at the start of june and got super anxious / depressed for 2 weeks but then my body settled down and got used to it. I now take 200mg in the morning and 100mg at lunch and it keeps me awake. If I make sure to get 8 hours sleep I wouldn't crash hard at night. But even so, I've been getting really frequent SP, and I started getting cataplexy when I laugh multiple times a week. Recently I've been getting it every day, at least once. I just moved house and started a new job and have had a really really busy and high stress 2 weeks and in the last few days I've not been getting as much as sleep as normal cos I've been busy meeting new people / staying out late to try and make a good impression (IE not bailing on karaoke but staying til everyone leaves so they know I'm not a party pooper). But yesterday I went round my (new) friends house for dinner and we stayed for ages and we talked for hours and as soon as i had eaten dinner (very heavy carby pasta) I started getting really sleepy and kept sort of having my mind wander/ start falling asleep for split seconds / not really remember what she was talking about and trying to respond in an appropriate manner. when I laughed, i'd get mild cataplexy, like my jaw would go slack so I couldn't make a laughing noise and I had to close my eyes cos I though they might look weird. (I felt like my eye sockets couldn't control the direction of my eyes so I want to close them In case they looks really weird) That happened repeatedly. Probably 5 times or more. Then she started telling me this really funny story and I kept laughing and the stories just continued and I couldn't stop laughing and I had to put my arms and head on the table and then stopped being able to move them or anything and it felt exactly like when I get sleep paralysis I was aware of my surroundings and could hear her find but couldn't move anything and my breathing went really shallow and weird. I could only move three of my fingers so I kept trying to move them, and finally I began to be able to move after 20 seconds or so. But I was really freaking out and was embarrassed in case she thought I was attention seeking or trying to divert attention from her story or whatever. But it was so freaky. I don't have any friends with narcolepsy, I'm not a patient at my old hospital anymore and have to wait till Friday to go to the new one and just don't really know how to deal. 😞 Has as anyone had experience with cataplexy getting worse when on medication? It really never used to be an issue but now I'm too worried to even cycle to work. I've never lost all ability to move my body whilst conscious before.
  7. Since starting to take 300mg of Modafinil every day / 200mg Modafinil + 10mg ritalin, I have... Not fallen asleep during the day Been getting physically/mentally exhausted (unmotivated) to do anything after 8pm, including going to bed. Been getting sleep paralysis very regularly (4 times at least in 1 week) Been getting cataplexy a lot. But I've noticed that my sleep paralysis has sort of morphed in form. It's changed since the start of me having it. Which makes me think that perhaps sleep paralysis can tell us something about our Narcolepsy. Type 1: Bad dream / no dream + Hallucinations upon waking. This is what I've had since 2011, at night and while napping. I may have no dream or a bad dream, then I'd wake up and not be able to move, with a heavy feeling and see or hear things that aren't there in my room. It would last for up to a minute. These hallucinations could be scary and unsettling or quite nice, or just confusing. I would get SP once every few months. Always within first 15 minutes of sleep. Type 2: Weird recurring dream (signaling SP will follow) + Hallucinations / no hallucinations upon waking WITH high posibility of LOOP Sleep Paralysis. This is what I've had since last year at night. I would always have a dream with the same "feeling" (the same themes, same weird feeling, same basic story), then I'd become conscious of the bad feeling and start expecting SP. Then I'd wake up and not be able to move. I wouldn't hear or see anything very often. BUT I would often fall back into sleep paralysis after I had regained movement. This happened because I did not adequately wake my body up enough before trying to go back to sleep, and I would get stuck in the same dream, same SP etc.etc. This way sleep paralysis could last longer, but would also not be so intense because I'd realise what was happening and therefore not look around my room or whatever.Always within first 15 minutes of sleep. Type 3: Dream / no dream + loop sleep paralysis 'dream'? This is the most recent type. I may have got it a couple of times before the meds, but increasingly after starting Modafinil. I would wake up, not be able to move, then slowly get myself out of it, then somethign weird would happen and I'd realise I was still not awake, and I'd get sucked into another 'awakening' into sleep paralysis. This transition between SP experiences is usually because I have 'rolled' out of bed, or something has 'pulled me out of bed', or I realise I am still facing the same direction even though I thought that I had moved. Then I slowly move parts of my body, get out of the paralysis, then realise I'm not awake stilll etcetc. This happens within SECONDS of falling asleep. In the last week I've woken up holding my phone, unable to move my fingers, and when I get out of it I realise that my phone's screen has still been on the whole time, and it hasn't been long enough for it to go to standby. It's hard to tell if it's real SP or just a dream of getting SP sometimes. My theory is that Type 1 happened when I was not sleep deprived and prior to N symptoms. Was probs just random REM-sleep order issues. I've had this type of SP recently when I went to my MSLTs. During the day naps both days I got Sleep Paralysis where I was sure I heard people talking and someone in the room etcetc. Type 2 happened when my stress started increasing cos of my dissertation or moving to Japan Type 3 happens when I am SO exhausted my brain can't even take longer than 1 minute to fall asleep. My doctor told me I'm probably sleep deprived (despite sleeping 7ish hours everyday) because the Modafinil is forcing me to be awake during hours when i woudl usually atleast subconciously drift off for a few seconds or minutes. I understand this, but can't seem to motivate myself to go to bed earlier. I'm also very scared of trying to nap in the day because I know I used to get SP with accompanying Hallucinations (Type 1) about 30% of the time that I nap (if I nap alone). I don't know if many people on this messageboard get sleep paralysis / have got knackered from taking too much Modafinil, but I'd liek to hear if anyone else has noticed a change in their SP experiences. It's like a vicious cycle. Reading books before sleeping has also given me N, because I tend to 'drift off too fast' after putting them down. But being on my computer/phone so much before bed can't be good. I don't want to nap in the day cos I may get scary SP. But if i don't nap then i'm just knackered. Unless I ask to try a different kind of medication. sure it's keeping me awake but i'm basically feeling really brain-dead during the evenings, AKA my only free time. And i never had it this bad before taking the meds.
  8. So I posted this on my help post but I want to focus just on this dream. I had a dream I was stabbed in the shoulder and I felt it. As soon as I was "stabbed" I felt a radiating burning sensation that began on site (the shoulder) but then spread down the entire left side of my body. I started screaming in the dream and it hurt so bad. When I finally was able to wake myself up the pain was completely gone but I felt like I had been hit by a freight truck. Probably from my body being so tensed. I have been having severe sleep paralysis and exploding head dreams that keep going even after I open my eyes but this takes it to a whole new level. It really really freaked me out. Has anyone ever experienced something like this before ?
  9. Hello fellow narcs, I am graced with three main disabilities: BiPolar 1, Borderline Personality Disorder, and Narcolepsy with Cataplexy and all the other sleepy stuff. I was wondering - does anyone share a mixture of these diagnosis? It has become a balancing act trying to keep me awake and functioning but not manic. Also losing my balance, hand strength, speech, etc is starting to get old. It got a lot worse after a manic episode last year and I kept thinking it would get better, but my doctor informed me that it won't get better. It seems that mania takes the narcolepsy up a notch. I lose the ability to walk several times a week and it baffles me. I am having trouble coping and accepting it. I've been diagnosed with narcolepsy with cataplexy for 8 years, but it feels like I just received my diagnosis because of the intensity of the cataplexy, sleep paralysis and EDS. Has anyone else's Narcolepsy gotten worse? How do you manage it? I have been unemployed for a year working on stabilizing the mania and restructuring the borderline with DBT. I can almost fully manage both those issues now. What I can't figure out is how am I supposed to get a job when I fall asleep, fall over, and can't drive on a regular basis? Basically... How do you manage narcolepsy? Thanks a billion!!
  10. For some reason, usually just during naps, I can feel my body fall asleep. My mind slows down and my thoughts start to kind of drift around into various topics. I feel my breathing start to change and slow down and as this is happening I kind of feel the Sleep Paralysis happening but it feels "Good" I suppose lol. I won't say it's euphoric or anything but it definitely kind of feels good. It's almost as if I feel this wave going across my body. This is also the time that I start to watch my dreams start, I sometimes hear music or people talking, this is also the time that I most often have HH. Suddenly I'll hear people talking and walking around me and I have vague visual hallucinations. It's never scary but very interesting for me. I'm curious, does anyone else experiences this "good" feeling while napping? I've been experiencing Sleep Paralysis my whole life and have had a few frightening experiences with it but usually I can work my way through it.
  11. Hello everyone, I want to share my story. I am wondering if anyone else has dealt with this disorder for as long without even knowing anything was wrong. Here's my Story. My Name is Debbie, I'm a 48yr old single mother of 2, single grandmother of 9, (two whom live with me). Full time career woman, that is back in school finishing my associates degree in psychology. I cannot pin-point exactly when I started having problems, but I remember having vivid dreams as far back as 2, I'm sure my sleeping habits were fine, I don't remember being awake all hours of the night, and I would get up without any issues when I was little, just the vivid dreams, that I can still remember to this day. I guess the excessive tiredness began in my teen age years, I would fall asleep during every class, I would sleep til noon if you let me, and in high school I found that I really enjoyed speeders. (Yea, I know, but makes more sense now.) They say that the onset of Narcolepsy is usually in the teens and early 20's. but I never gave it much thought until recently. I suffered from a major trauma when I was 15, not physical, but mental. (I was kidnapped and raped, but left uninjured to put it midly). My boyfriend at the age of 17 tried to kill me, which was one of my biggest PTSD starters. Not sure if either of these things helped cause the problem, but the time frame is there. Yes, I suffer from depression, but I don't recall having it until much later in life. My PTSD didn't rear its head until much later either. So, having said all the above, this is how I remember my life long problems. Falling asleep in class to me was normal, all kids do that, right? Sleeping the day away, again, normal, right? I mean, if I was up all night, didn't it make sense to sleep all day? Getting pregnant at 19, well that makes a person tired, of course I was going to sleep. Normal again. Newborn, gotta sleep all the time, Here's where I thought I was lazy and so did everyone else. Having a toddler in the house, and falling asleep off and on all day long if I sat down, was not good, one day, he was napping and I guess I was too, when my mom came home from work to find my 1 1/2 year old outside in a diaper in the middle of winter. THANK GOD my mom came home. He was fine, I fell asleep, as usual and he went outside. Still, just lazy. Falling asleep at a drill press at work, falling asleep when answering the phone, fighting to stay awake while driving, falling asleep at a band saw. Just tired. I figured when I was bored, I would fall asleep, just normal. (Crank seemed to be a very happy drug for me for about a year, thank GOD, I quick that when I realized I was starting to have a problem). When I was 22, I had my Daughter, my son would go to his dads for the weekends, and I would sleep the entire weekend away, up to 48 hours, just getting up long enough to feed and change a newborn. I just figured lazy again, i found the longer I slept, the worse I felt, to the point that I couldn't wake up anymore. I learned to fight that part. Then I started getting a new symptom. I would get this weird sound in my ears, like electricity, kind of like building up from a small pressure, until it would explode. I cannot even explain it, and everytime it was while I was laying down to go to bed, and I knew, that I was going into a paralays state, I hated it. OMG hated it. I would be powerless, I would lay there and fall into a dream like, yet awake state, where my brain was awake, but my body was paralized, I couldn't speak, move, nothing. I would try everything in my power to get my body to respond, I thought I was dying. Most of the time I would finally come out of it and would get up and go into the other room until the feeling passed, sometimes I would finally fall asleep and be out of it. I thought everyone went thru this at some point. Those things finally subsided somewhat and I seemed to be better, except for the excessive fatigue, oh and not so much insomnia, but the vivid dreaming and waking up all night long. I just thought It was because I was a single mom and had become a light sleeper. I remeber I was working for an ambulance service in my middle to late 20's and I would take patients to doctors appointments and I would either go outside and wait in the van and sleep, or I would just lay my head back and sleep in the waiting room. I also found that I was much more alive at night, so again, I just had my days and nights mixed up. This is how I lived and it was just my norm. no big deal. Until I hit about 40ish, The fatigue seemed to increase, my depression also seemed increased and my PTSD came full force. Time to talk to the Doctor about it. I was put on an anti depressant, which helped with the depression, I wasn't crying all the time. They did test for Thyroid, diabetes, you name it the blood worked it, all fairly normal. My gynochologist thought it was hormones, even though my hormone levels were not off the charts, they tried low dose hormones anyway. Yea, that didn't work. My neurologist even brushed it off and hormones, depression and then diagonosed me with fibromialgia. Nice. So now, my fatigue has increased, the brain zaps from younger days have returned full force along with the sleep paralasys. I even thought it was certain meds causing the problem, I couldn't sleep at night, tossing, turning and when I did fall asleep I would dream and be right back awake. My doctor decided to put me on Ambien, because if I could sleep at night, then I would feel better during the day. So now I'm addicted to Ambien, Cymbalta, plus, my heart rate has always been really high, so on a med for that, and cholesterol meds, I've gained 60 lbs, because I can't function anymore, I'm also on vitamin D because it was a little low, and I'm on Restless Leg syndrome meds. But, even sleeping a little better at night with the ambien, I am still exhausted during the day. My Doctor sends me in for a sleep study, maybe apnea. One sleep study later, conclusion, No apnea. That was about it. I keep complaining to my Doctor that I can't function anymore, so he sends me to an internist to figure it out. The internist want's allergy testing and another sleep Doctor, he say's and here is some Nuvigil, maybe by a slim chance it's narcolepsy. Well now theres a new word. Not thinking much about that either becaue I don't just fall out, which is what I associate narcolepsy to, when your sitting and talking then snoring. I never do that. So allergy testing done, I do have an allergy to something, but not sure what yet, and finally new sleep doctor who is going to do a full sleep study. She however takes me off all my sleep meds and anti-depressants, so now I can't sleep at night, at all, and I'm an emotional roller coster. Oh and by the way, thru all of this, I went thru menopause. and the nuvigil, just made me crash harder, when I would crash, and clinch my jaw. Sleep study finally done after a month of no meds and a wreck. Results in after a week, guess what???? Yep.... SEVERE NARCOLEPSY w/o calaplexy, ( kind of wonder though, when I get really upset the top of my scalp would really start to tingle, like from lack of oxygen,, I would just calm down really quick) Now, here I am 36 years later, with a diagnosis for something I thought was normal, You have no idea how my life is making sense. But, Nuvigil, that is the question.
  12. Hi, I am currently a student, but I think I may have narcolepsy. I believe I have been suffering from cataplexy and sleep paralysis. I attend a residential school, so I have poor sleep habits. I generally sleep at 2am on weekdays, and 5am on weekends, often waking up past mid to late morning. I usually have to take naps during the day too. The issue with me is I have been having very vivid dreams, where my dream scenario is the exact same as my physical situation. Except I cannot move in either the dream or in real life. I always try and wake up, but my eyes are unable to stay open for more than a second. Some more details to go along are that I think I am aware that I am in a dream, because I can't notice any specific details. Like I can't check the time on my watch in the dream. But, the worse issue is that I can't wake up until something horrible happens to me in the dream. Most recently I have been shot by a gun, and I can't see who is shooting it, and then I can finally wake up, but I still can't move for another three to five minutes. Do I have narcolepsy, and what should I do about it?
  13. Hello all. Hope people aren't too sick of answering questions from the newly diagnosed and confused Sorry if this is a bit long. Some background: I'm a student, and have fallen asleep in every class constantly for the past eight years, but did quite well until I came to vet school and missing huge chunks of class was no longer manageable. I honestly never thought I had any problems until my med student friend told me something might be wrong. Knowing already that I'm always tired and can sleep anywhere/anytime should the need arise, my friend asked me about sleep paralysis (I have had about 8 or so episodes ever, 3 in the past 4 months), hallucinations (which always accompany my sleep paralysis), and cataplexy, which confused me the most. I do get a slight weakness in my hands and am unable to grip things (pens, instruments, etc.) when I laugh/am angry/am nervous, but the degree of the emotion doesn't seem to correlate with whether I lose my grip or not. I might just be a bit miffed and get it, or laugh nervously and get it. I was told this is mild cataplexy, though. Anyway, I did my PSG/MSLT, and I had an extremely low sleep latency but no SOREM at all, so my results are consistent with IH, but my sleep specialist thinks I have N based on my symptoms. In any case, the treatment is the same (I'm on armodafinil...tried it once so far, seemed to work), so I'm not fretting about that. I'm really just curious: is it possible to have IH with N symptoms, or mild N with no SOREM? I read about how IH naps are long and unrefreshing but N naps are short and refreshing for a little while, and I've honestly had both many times. Hope someone has some insight!
  14. Hi everyone, I was diagnosed last week and this is my first post. I went to the sleep doctor because my sleep paralysis was out of control and I became anxious throughout the entire day from it. So I have a question: How in the world do you cope with sleep paralysis? Do y'all have any tips? I get sleep paralysis as I'm trying to fall asleep, and I often hallucinate situations that are occurring around me while I can't move. When I wake up from it, I've been trying, physically struggling to come out of it. These episodes make me so anxious, I wake up struggling for breath with my heart racing, and I'm simply terrified! Do y'all have any tips for dealing with sleep paralysis in the moment? I've tried a few times to not come out of it and just breathe steadily, but it only works for a few seconds before I start struggling again to wake up.
  15. I only ever read about people who have terrible hallucinations. I have never had a "bad" one and was never afraid of sleep paralysis even though I had no idea what it was. Does anybody else not have scary times?
  16. Posts: 1 New Member Send a PM Give a Hug *I didn't intend to write such a long post, but I would GREATLY appreciate it if anyone could take the time to read it. OR just skip down to the last two paragraphs!!! Before I explain my test results I would like to explain a seizure-like episode I had two years ago as one of my doctors said it may have been cataplexy. At the time I was on 0.5mg of Klonopin a night for sleep/anxiety and 10-20mg of Adderall a day for ADHD. I was also going to UC Santa Barbara full time, working an average of 30+ hours a week and had a boyfriend so I wasn't always getting enough sleep which was my mistake. I woke up one morning to go to work (I think it was during midterms or finals but I'm not sure) for my crazy over-bearing manager at Nordstrom. (Disclaimer: I now know that my actions on this day may seem utterly stupid and I should have taken the hint, but I was young, ignorant and intimidated by my co-workers.) I was utterly exhausted and running on very little sleep so I woke up and took 10mg of Adderall and drank a cup of coffee. I managed to get to work and stood there for about an hour and realized that even after adderall and coffee I was still reallyyy tired and felt woozy. I mentioned not feeling well to my only co-worker that day who gave me a *BEEP*y "I don't believe you, you're not going home" look along with a sarcastic remark. For some crazy reason, I thought that maybe if I took my ten minute break and drank a red bull that would help, so that's exactly what I did. I went back to work and felt worse than ever: light-headed, tired, weak and mentally foggy. I couldn't fight my fatigue so I left work and called and asked my boyfriend to pick me up. As I was sitting on the bench waiting for him, my arm started twitching uncontrollably, then my legs started and I wobbled into my boyfriends car and he immediately started driving me to the urgent care at student health. During the car ride, my whole body started twitching (seemed like convulsions), my head was drooping forward when it wasn't jerking to the side and I couldn't fully keep my eyes open. When we got to student health he had to prop me up to walk me in because in addition to the jerking, my legs kept giving out. While waiting for the doctor my head lolled forward at which point I laid down. The doctor was utterly bewildered when he saw me, and quickly gave me dissolving ativan which caused my symptoms to subside. He didn't seem to think it was a seizure because I was conscious the whole time, my eyes never rolled in the back of my head, my mouth wasn't foaming and the episode was fairly long. He noticed a rash on my chest and suggested first that I was having a panic attack and then that perhaps the Septra that I was taking to fight an infection on my foot caused an allergic reaction as well. Even though the initial doctor I saw didn't diagnose my episode as a seizure, I went to the ER a day or two later to get a note for calling out of work because my neck was killing me from the incident and I was totally drained and of course, my boss didn't believe me and demanded a note. I briefly explained to the doctor what happened and said the word convulsions so he immediately diagnosed the episode as a seizure, so it was documented in the computer system that I had a seizure. The hospitals and school health center here have some weird connected computer system so by the time I got to my psych and explained the incident, he read the ER doctor's notes that I had a seizure. He listened to my quick explanation and said that while it may have been an episode of cataplexy, it seems like it was a seizure so he immediately took me off of adderall and mentioned that I should go to a neurologist. In light of the situation, I think he made the right call, but without medication, the next year of my life was a struggle. Long story short, I ended up getting academically disqualified so I lost my health insurance. I quit Nordstrom for a more laid-back job and got back into school at which point I went back to the psych to discuss my options. I had a neurological examination, EEG and MRI which all had normal results. I had a PSG and MSLT at the end of January and results came back pretty normal for the PSG with 5 respiratory arousals and 41 non-specific arousals. I also had an episode of sleep paralysis in the middle of the test which doesn’t show on the test, but I definitely know what it feels like! In my MSLT I fell asleep in all 5 naps with a mean sleep latency of about 12:54 and two sudden onset REMS. It is important to note that I had horrible menstrual cramps and anxiety all throughout the test, especially during the fifth nap because I was so fed up of being woken up and couldn’t wait to leave. The doctor decided that while my sleep latency was too high to diagnose narcolepsy, the MSLT was “highly suggestive” of it and ordered a blood serum test. My blood serum test came back negative for the DBQ1*0602 allele. At my previous doctor’s appointment he said that if the test comes back negative, he’s probably going to diagnose me with Idiopathic Hypersomnia. He stated on the test results, “The test results are negative. This means that some medications will not be approved by your insurance. We will work around this. We will discuss more during your follow up visit.” I’m assuming he’s referring to Xyrem not being approved by the insurance company. Basically my dilemma is this: since I have sleep paralysis, sleep paralysis hallucinations, VIVID dreams that I always remember, muscle jerks at night sometimes, SOREM, and possible (though highly unlikely at this point due to the blood test results) cataplexy, I am convinced that I still might have narcolepsy in which case I would like to at least try Xyrem as I’ve heard it can be life changing for narcoleptics. Should I consider the painful and risky spinal tap? Or should I just work with my doctor and wait until I can take another sleep study? Or does my story seem standard for a diagnosis of Idiopathic Hypersomnia?
  17. Hi all, I'm new here, not sure if this post belongs here.. I have read over a few other threads on this forum and can really relate to a fair bit of it...which is both a bit comforting and nerve racking at the same time Ive been to a number of GP's at least 7 times over the past 3 years regarding why im tired all the time, had thyroid, iron, vitiman D, B12, liver and kidney tests and ECG's (heart test?) all have come back fine. I have made an appointment for this Monday with a nice GP i have seen only a few times now but never asked about my sleep. I am desperate for a sleep test, to at least rule out a problem? or hopefully give me n answer. Most GP's have been reluctant to write a referral. Im hoping the people here at this forum could tell me what the important symptoms I have are and what I need to tell the GP. I've had issues with sleep since I was a child. The problems have tended to change, come and go, etc. but the underlying problem is always being extremely tired! I'll write a bit about my past sleep and my problem now, This is probably going to be a long post but im hoping someone will be brave enough to read it through and give me some advice from the time I was really young (4 or 5 up until the age of 10 to12) id have nightmares and bad night terrors, and only fall asleep after hours of lying there awake. Before falling asleep, waking up (or sometimes at 2 or 3 am) quite often I used to swear I could hear someone say my name, or my mum telling me to get up and get ready for school (even though she was fast asleep). A few times I actually got up and dressed and started making breakfast and getting ready at (2am in the morning my mum told me). I don't think I was asleep, but I wasn't really awake either and didnt realise exactly what I was doing or the fact it was pitch black outside, was sort of on auto pilot. At 13 or 14 I had really bad trouble with insomnia, getting roughly 2 - 3 hours sleep on a good night and often going up to a day or two without sleep at worst - though generally managing 2 hours a night. Also at the same time form age 12- 20 I had varying levels of severity of anorexia and bulimia, but needless to say it made me even more exhausted with no 'fuel to run on'. I would fall asleep two to three times a day (accidentally) during classes at school , and in (final year) would have trouble keeping my eyes open - 75 minutes later wake up without realising I had fallen asleep for the whole class! (teachers knew I had trouble sleeping, and talked to me on numerous occasions about the importance of not sleeping through their class, but seemed to let me do it - maybe they felt sorry for me? lol) its a wonder I passed at all! I was prescribed 100mg of Largactil (an anti-anxiety/sedative) after numerous sleeping tablets hadn't managed to help me with a 'restful nights sleep'. While Largactil mostly helped my insomnia my current problem started and has been a problem for at least 6 years or more. Okay so, here goes; I am unemployed at the moment, so spend most of my time at home looking for work...I am tired all day, every day. being *completely* fatigued and fighting sleep that seems to come in waves throughout the day. I am now able (a quater to half of the time) on a good day to stay awake without falling asleep that i'm aware of, the rest of the days I will need at least one to two naps. I wake up groggy and exhausted, no matter how many naps. my energy then is a bit better for a few hours before needing to nap again. I sleep an average of 9 to 10 hours a night with the occasional night maybe 4 times in 6 months where I have been awake the entire night - but what I think what really exhausts me, is it feels, as soon as I fall asleep that I'm dreaming, very detailed dreams that require me to think yet I cant control what happens in these dreams, or wake myself up, I wake up usually mid dream(?) or after the dream ends, then fall asleep after a minute or two and have another dream. I average 4 to 5 dreams a night, or at least 3 very very long dreams. when my alarm goes off in the morning is when the dreaming stops for a moment, I wake up, press snooze and usually fall back into dreaming. repeat this usually two more times. I'm so exhausted because I feel like I live a whole nother life at night. There are some other things I thought I should mention to GP: I think I might have experienced sleep paralysis, will be fully consious but can only half open my eyes, cant move, have a pressing/heavy feeling on my chest and feel fearful/panicky I feel like im being watched or theres someone there sometimes, even though theres not, it probably only last a few minutes but it feels like forever. And also - a little bit, (used to be more) but similar to parlaysis before going to sleep, mainly after I wake up, I cant open my eyes or move, I used to feel panicky (just because I didnt know what was going on!) I put huge amounts of effort into trying to open my eyes and move my limbs, Im awake but my body wont respond, the best I can manage is maybe seeing a glimpse of light of some sort (I think im barely opening eyes/lids flickering) just before Im able to finally move. It hasnt happend this year thankfully! I have always daydreamed a lot, even as a kid, my imagination gets carried away, especially when im tired, but then again everyone day dreams, what im not sure, is if its normal to be so tired/immersed in a daydream that you dont blink, dont register whats going on around you at all, and dont really hear? or notice sounds, and body is completely relaxed - or even unaware of body all of a sudden I seem to 'wake up,' There are a few things I read here (and elsewhere) that I seem to have in common with narcoleptic's? (not at all saying I have it) but maybe should mention to a doc? I am very very clumsy, especially when tired! I will trip up, down stairs, and fall over my own feet (especially when my legs feel heavy) and no matter how hard I try to think "i will not drop such and such" things seem to slip out of my hands, (the worst being - I was exhausted when I worked and dropped a digital slr camera which smashed, at my job, plus another customers camera). When I laugh (very hard) my muscles feel tingly and all relax suddenly, sometimes loose control of my bladder a bit (embarrassing!). I've noticed, during some therapy sessions when I am extremely scared or stressed I get blurred vision, feel like i am far away, I get a ringing in my ears, light headed and tingling in my limbs, feel like I cant move, I think and talk slowly. I do have a dissociative diagnosis, but I am wondering if a lot of the things I experience could be extreme lack of sleep? finally quite often i think Im doing automatic actions? such as turning of lights, moving items, cleaning something and have no memory, I'll just be doing one thing, walk into another room come back and e.g the lamp is off, or the clothes are all folded. I always thought this might be related to dissociation but my Psych said probably not a large enough time gap (and haven't had problems with losing time for a very long time now) suggested it could be automatic actions... wow.......sorry this is such a long post! its taken me since 9.45pm to almost 11:3pm0 to write this beause my brain checked out a long time ago!lol... usually being in bed by no later than 9.30-10.00 absolutely exhausted now, but just had to write all this down and eager to hear if anyone has similar experiences or can relate at all or any advice? Thanks!