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  1. Methamphetamine and Amphetamine Use Triples Parkinson's Risk Pauline Anderson December 22, 2014 Individuals who use methamphetamine or its metabolite amphetamine face a threefold increased risk of developing Parkinson's disease (PD) compared with nonusers, and the risk may be particularly high in women, new research shows. The retrospective cohort study of Utah residents confirms an earlier report of increased PD risk among meth users, although that study was limited to California inpatients and did not report risks based on sex. Lead author of the new study, Karen Curtin, PhD, University of Utah, Salt Lake City, and associate director, Utah Population Database (UPDB), called the findings "sobering." "If you think about how many people worldwide get Parkinson's disease and the explosion over the last couple of decades in the use of methamphetamine and amphetamine-type stimulants in the drug-using population, these long-range effects could have significant consequences both for individuals and for the communities they live in." There are also implications in terms of the healthcare burden, she added. "Parkinson’s disease is a long-term illness, and treatment is expensive and it gets progressively worse." The study was published online December 11 in Drug and Alcohol Dependence. Young Victims Researchers used the UPDB, which houses computerized records for nearly 8 million people, as well as University of Utah Healthcare and Intermountain Healthcare (UUHC/IH) records. Therefore, they had access to inpatient discharge records, including admissions from an emergency department, as well as comprehensive outpatient clinic records from the largest healthcare providers of patient services in the state. The primary outcome was time from baseline (January 1, 1996) to index diagnosis of PD or PD/Parkinsonism/essential tremor (PD/PT) to the end of 2011. Those with HIV were excluded from the study because it can result in parkinsonismlike symptoms. The study included these cohorts: A meth/amph cohort, which included 4935 patients aged 30 years or older who were using this drug but no other illicit drugs, including cocaine, and who did not have any alcohol-use diagnoses A cocaine cohort of 1867 patients aged 30 years or older who did not use meth/amph or other illicit drugs except cocaine or abuse alcohol An unexposed, randomly selected age- and sex-matched (5:1) control group for each of the exposed groups, representative of the Utah population, who did not have a prior diagnosis of PD or PD/PT or an indication of illicit drug use or alcohol abuse Results showed an approximate threefold significant increased PD risk based on the hazard ratio (HR) of methamphetamine/amphetamine users (men and women combined) compared with unexposed control individualss (HRPD 2.8, 95% confidence interval [CI] 1.6-4.8; P <10-3;HRPD/PT, 3.1, 95% CI 2.1-4.5; P < 10-4). Dr Curtin noted that a diagnosis of PD was found in patients as young as late 30s and early 40s. "Jenny Crank Diet" An increased risk for PD/PT in women who were exposed to meth/amphetamines compared with female control individuals (HRPD/PT, 5.0; 95% CI, 2.9 - 8.6; P < 10-4) was larger than in men (HRPD/PT, 1.9; 95% CI; 1.1 - 3.5; P = .03), although confidence intervals overlap. A case-only comparison of female vs male meth/amph users was statistically nonsignificant. "We need more research and more confirmation from other studies" to explain why this sex difference might exist, commented Dr Curtin. Researchers wanted to investigate sex differences for a number of reasons. In 2012, 19% of patients who were admitted for drug dependence in Utah claimed meth as their principal drug of choice, and women were almost twice as likely as men to have a meth-related hospital admission (27% vs 15%). "Women begin to use illicit drugs in lower doses than men, but they tend to more rapidly escalate to become addicted, and they seem to have greater risk for relapse," said Dr Curtin. "They also seem to have more comorbidities, like depressive disorder or psychological disorders." During the past 10 years, there have been growing concerns about young women using meth, she said. "There's this perception that it will help them lose weight after pregnancy and have more energy; it was termed the Jenny Crank diet" (crank is slang for meth). Utah is the 17th leading state in terms of meth use. At one time, meth was relatively cheap and was easy to make in home laboratories, although many of these have been shut down, said Dr Curtin. Nearly half of the meth/amph-exposed individuals in the current study were women. By comparison, in the cocaine group, male users outnumbered female users by nearly 2 to 1. Smoking's Role The cocaine cohort had no increased risk for PD/PT compared with unexposed control individuals. Dr Curtin noted, however, that the number of outcomes was extremely limited in the exposed patients. Although meth affects dopamine receptors in the brain, cocaine does not work through this pathway, said Dr Curtin. She added that including the cocaine cohort indicated that the increased risk for PD was not just through illicit drug use but specifically through meth use. The researchers were interested in the potential confounder of cigarette smoking. Utah has a lower smoking rate than the rest of country, although meth addicts in general have very high smoking rates. At the same time, smoking has been consistently associated with decreased PD risk. "Maybe that could be why women are at greater risk," Dr Curtin speculated. "They don't smoke as much as men and so may not have that protective effect. What's really chilling is that about 70% or 80% of meth users smoke in Utah ― and probably 90% nationwide ― so what would the risk estimates look like if these people were nonsmokers? Is the smoking keeping the risk from being even higher?" In this study, adjusting for tobacco use did not substantially affect the estimated risk for PD/PT in the meth/amph vs cocaine cohorts. Researchers did not adjust for race or ethnicity because 80% of Utah residents are non-Hispanic whites. However, PD prevalence differs between races as well as with regard to sex, with rates being higher among whites than nonwhites, said Dr Curtin. The age at first use of meth averages about 18 years, whereas the average age at onset of PD is about 60 years. Asked whether PD not only occurs more often among meth addicts but also earlier, Dr Curtin said that her data suggest that this is the case. "We have some indication that the time to the index diagnosis in the meth users was a shorter period than in controls." The study findings underscore the importance of educating young people about the long-term consequences of using meth, said Dr Curtin. She pointed out that public health campaigns using descriptive images of people with lung cancer "have certainly kept young adults from starting to smoke." A potential source of bias in the study was that the administrative claims data may not have correctly identified PD. As the authors noted, there is no "gold standard" diagnostic test for PD, and results of studies that evaluated the accuracy of the relevant diagnostic codes are mixed. In addition, the authors assumed that index drug abuse preceded the first diagnosis of PD/PT, but it is possible that a diagnosis of the disease came before drug exposure. And they did not control for exposure to antipsychotic medications that may have side effects that mimic PD. Next on Dr Curtin's research agenda is gathering more information about the impact of smoking on PD risks among drug users. She also plans to try to corroborate the PD diagnostic evidence by using data on levodopa and carbidopa, which are treatments that virtually all PD patients are prescribed at some point. In addition, more research is being planned using sex-specific models in the laboratory. Mounting Evidence Commenting on the study for Medscape Medical News, Michael S. Okun, MD, professor, University of Florida Center for Movement Disorders and Neurorestoration in Gainesville and national medical director, National Parkinson Foundation, said the study adds to the "mounting evidence" that supports the idea that illicit drugs can increase the risk of Parkinson’s disease. "Though these data cannot be interpreted to mean that everyone who takes a recreational drug will get Parkinson's disease, it is important for users to be aware of this strong association," added Dr Okun, who is also author of Parkinson's Treatment: 10 Secrets to a Happier Life. The authors and Dr Okun have reported no relevant financial relationships. Drug Alcohol Depend. Published online Dec. 11, 2014. Abstract
  2. So I've read that 75% of people with narcolepsy never get a diagnosis in their lives. That means only 25% of people ever get treated for the problem. So scientists say 50,000 people have been diagnosed, but about 150,000 people haven't been. My question is, how do we know how many people aren't being diagnosed if we know that it is so under recognized (and we do know that, at least, because it takes 7-15 years to get a diagnosis)? How do we accurately attempt to estimate how frequently narcolepsy occurs in the population?
  3. Is this cataplexy?

    I was referred to a sleep specialist recently for what I thought was just a lifelong insurmountable struggle with insomnia, and I was tentatively diagnosed with narcolepsy with cataplexy (pending a sleep study and MSLT in May).   Originally I thought I had unrelated Bell's Palsy, but the sleep Dr. (accredited) said it was facial cataplexy. Once I thought about it, I realized that I had cataplexy in my knees (once I even fell), my hands (I randomly drop things), my neck (droops when I laugh), and once, I fell over completely, laughing. I droop all over when certain people hug me, too...but it doesn't feel like I'd think paralysis would feel... I just feel too weak to keep standing/holding my neck up, etc.   This is a video of me in one of my college classes, watching a funny event. I'm the one with the dark brown hair pulled back into a pony tail. At :01, I laugh, and my head droops, then again at :08 I laugh, and my head droops again, and stays down for about 10 seconds. It didn't feel alarming to me at the time, but when I look back, it's kind of scary. Do any of you have cataplexy episodes that look like this?    Full video Head Cataplexy.mp4
  4. I think I might have narcolepsy without cataplexy, but I'm worried I won't get diagnosed. I have a sleep study set up for PSG but no MSLT even though my primary who send the referral to the sleep doctor is the one who suggested I may have narcolepsy (and my psychologist agrees). Can they diagnose narcolepsy based on REM onset on a PSG, or do you think they would have to rule out apnea before getting an MSLT. The thing is, I'm worried I'll have apnea and they'll treat that, but since reading about narcolepsy I've had so many of those symptoms since I was 14. I'm afraid that it will go undiagnosed if I don't get an MSLT and have some apnea. I dint think we have any neurologists in my city who do sleep medicine, only pulmonary.  Symptoms are a lot of sleepiness without regard to how much sleep I got the night before, though it's certainly worse without adequate sleep. I always dream during naps, which I sometimes take in toilets because I'm at work or in public and there's nowhere else to sleep without being seen or having my stuff stolen. I have wild and vivid dreams that I usually realize are dreams even if I don't take control of them. (Like I realize I'm at work when I'm at work but I don't often think that thought consciously, it's just the knowledge is in my brain). I also will doze off standing up, and if I'm trying not to fall asleep I will continue with my behaviours. Usually at work this happens when I'm typing, and I'll start writing about whatever is happening in my hypnagogic dream. I've had this problem of falling asleep while writing since high school, waking up and finding my notes are illegible scribbles, sometimes including words having nothing to do with the subject of the class (found the word Idaho in sleep notes from a pre calculus class).  Incidentally I've been put on phentermine for weight loss, just a short 90 day course and there will be no refills. It's an amphetamine, and since starting I've started it I've been so much more alert. I don't feel high or super energetic, I just feel like a person, finally, a human who can actually function in the world. I will still get sleepy if I didn't get enough sleep, but I won't actually fall asleep or even need to. It's just kind of like a sweet, pleasant sleepiness that doesn't ruin my job performance. But I'm only on that medication for a short course. I'm afraid I'll get put in CPAP and just go back to falling asleep all the time. Now that I know how normal I feel on the medication I'm terrified to stop; I cannot cannot go back to how tired I was before. I thought it was normal and inevitable to feel that way, but now I know it's not....i don't ever want to have to feel that way again. I took my medication late today and started dozing again at work and writing my dreams into important legal documentation. I HATE THIS. I guess I'd like to hear some thoughts on how hard I should fight to have the sleep doctor seriously consider narcolepsy. I thinks it's possible my symptoms could be explained by sleep apnea, but I think it's unlikely that I've had apnea since I was 14. Does that sound reasonable?
  5. Doctor Thinks I'm Crazy. Am I? -

    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
  6. Narcolepsy? Not Even Sure.

    Hay I'm new to this community! I've been doing some research on N since my doctor mentioned all my symptoms sounded like it. Here is some history. I've had weird sleep my whole life, I've always had vivid dreams I can remember, had night terrors nightly as a kid and even had times when I would wake up and do things. I was diagnosed with depression at 18 and have been on various sleeping medicines to help with that as it seems to affect my sleep a lot. I've been on Trazodone, Seroquel, Ambien, Clonazepam etc etc etc. I've also had a lot of daytime sleepiness which I have always attributed with Depression. Every time I talk to someone about it they say, "Thats just a part of the depression you have to get used to." I'm, 33 now. Last year I started having super scary sleep hallucinations where I would see people in my room, try to get up and talk to them. (this happened at least twice a week, every week for several months) Among other things I though there was a person in my apartment that had gotten through locked doors and would see gigantic insects. But mostly it was a person standing at the end of my bed or on the other side of the room. It was always super scary. My boyfriend was even there for some and was like "You need to talk to your doctor." Along with this had SUPER scary nightmares that would wake me up fully out of sleep, so vivid I thought they were real. I was taking a drug called Clonidine at night at this time and asked my doctor if anything like that could cause the night time hallucinations and she said no but scheduled me for a sleep study. As far as cataplexy I am confused because I have had times when I feel weird, almost like I'm about to pass out, only when I get EXTREMELY angry. Like angry to the point where I want to punch someone for real. I attributed this to the Clonidine since it can cause blood pressure irregularities. I've never totally collapsed and when I do feel that way, its only for like maybe 10 seconds or less and I'm not even sure what it was at all. For the study itself I had to go off two of my medications (Fluoxetine, Clonidine,) and the hallucinations seemed to stop, even though I was still taking 10mg of the Fuloxetine (I wasn't able to get all the way off of it as it was causing badness with depression to show up again)   Last week I had a PSG and an MSLT the next day, I know I slept during the PSG but I have no idea how the MSLT went, I remember having fragments of dreams but I'm not even sure if I did. I guess I'm just worried that they will come back and be like "You are perfectly fine!" because I mean, my sleep is totally weird!   I guess, what I want to know is, how much of this sounds like Narcolepsy, and maybe get some advice on how to deal with these symptoms. I go in on Tuesday next week for my followup and if there are any questions I should ask, let me know! I think it would be just nice to have someone to talk to, I haven't talked to my family much about it because I don't want to worry them.
  7. Dear all, Hopefully you can help me with this! I had a diagnostic sleep study, and my doctor and I agree it was distinctly abnormal.  I have been having what I now know are "sleep attacks" at work, on the bus, and everywhere else.   I fall asleep for what seems like a few seconds or so and then am somewhat awake, and then back to sleep, etc.  Caffeine helps some but not much. On the sleep study, I had a night-time sleep latency of 7 minutes, and I had 34 arousals an hour while asleep. I actually had a lot less REM sleep than normal people and more slow wave sleep.  In the daytime, I had no REM sleep but 3.5 minutes average sleep latency-usually 1-2 minutes.  Apparently I have severe  daytime hypersomnia and severely disturbed nighttime sleep. I am on a lot of antidepressants.  I also have hallucinations when I fall asleep, sometimes.   Because my job has a rotating shift once a week, my doctor wanted to make sure I got a consistent sleep schedule of 8-9 hours a night before making a diagnosis.  I had previously been getting maybe 6-7 a night.     I am already less sleepy, after less than a week, and I am really hopeful that I was just sleep deprived. Is that unrealistic? I am still taking naps and "sleep attacks", though much fewer sleep attacks.   Is this wishful thinking? Thanks.
  8. Undiagnosed something-or-other without cataplexy here. I've gone through the basic overnight sleep study with my sleep specialist, and he wants me to take the MSLT to test me for Narcolepsy. I have EDS, sleep attacks/microsleeps, vivid dreams and dreaming during short naps, fatigue, some symptoms of N w/o C (hallucinations), and other symptoms that seem to be more in the range of IH (long naps, not refreshed). I've read stuff both on this website and on other websites about the low test-retest reliability of the MSLT in distinguishing between N w/o C and IH, and the possibility that they're actually just the same disorder at different points in time.    And I'm super down for taking the MSLT, and think that a diagnosis of some sort would be really nice, but I've been on Lexapro (20mg/day) for ~6 months for PTSD and Panic Disorder (or General Anxiety Disorder NOS, depending on whether you ask my psychiatrist or my therapist), and I'm worried about two things.    1) The effect that having extremely high anxiety would have on my sleep latency during the MSLT. Even when I'm extremely exhausted, pre-Lexapro it would sometimes take me upwards of an hour to fall asleep because I couldn't stop my head from spinning. Are doctors able to take this into consideration during diagnosis? I don't think that it would take me over an hour to get to sleep anymore, but if it took me 12 minutes instead of <8 or something, would that disqualify me from having a sleep disorder? And I guess as a different question, would that fairly disqualify me from having a sleep disorder, or is that a failing of this test?    When I was diagnosed with sleep apnea, the plan had been to start me on the MSLT right after my PSG, and so even though the MSLT was cut short when my sleep apnea results came in, I still got through two naps and fell asleep really quickly during both of them, dreamed during one. (I don't know latency in minutes.) And that was while I was on Lexapro (my doctor forgot that I was on it at the time, I think).   2) I tried to come off the Lexapro already and had to go back on a few days later because of how bad the withdrawal symptoms were. I could deal with the nausea and depressive symptoms, but I have a detail-oriented job and the brain fog was leaving me unable to do my work. I also got dizziness so bad that it was hard for me to walk down a hallway, and if I turned my head too fast all of the colors would blur together and make it hard for me to see. (Bad when driving.)    I'm on 250mg Nuvigil right now and it's a hell of a lot better than not being on any meds at all, but I still get regular sleep attacks (down from 3 a day to 1 a day, sometimes every other day) and I'm still exhausted, fatigued, and sleepy all of the time. It's so much better than not being on anything, but I want to get it better if I can. I'd like to try other stimulants (maybe Ritalin?), but my doctor doesn't want to prescribe anything but Nuvigil until I have a diagnosis. (Right now the Nuvigil is being billed to my insurance under Sleep Apnea, which I have very mildly and is completely under control now. But it's the best we can do without any other fatigue/sleep diagnosis.)    Is there any way to get a diagnosis without going off Lexapro? (Guessing the answer is no, but asking in case.)    And if not, is there anything I can do to reduce the symptoms of the Lexapro discontinuation? Are there any effective treatments for my sleep disorder that I could do without getting off Lexapro? I'm sure I can't be the only one who's ever had this problem.   Thanks!
  9. Hi everyone, i'm in a bit of a weird situation here. I'm a 19 year old female, recently diagnosed with narcolepsy and was prescribed government subsidised modafinil (Australia). What i've noticed is that whilst I meet the government's definition of narcolepsy I do not meet the DSM-IV criteria. My sleep specialist says it is 'possible' that I have narcolepsy but will not give me a definite answer. Although i'm sure I have some sort of sleep disorder I am doubting my diagnosis. I would greatly appreciate it if someone could read this and share your thoughts.   Symptoms   Excessive daytime sleepiness - Since I was little (starting at around 4) i've always had a tendency to fall asleep easily and at inappropriate times but it started to become extremely problematic when I reached my mid teens. By the time I was 15 I was falling asleep every lesson, every day. Outside of school I would fall asleep during movies, as a passenger in the car (even through few minute trips), on public transport, studying, etc. Getting sufficient sleep and drinking coffee was not a solution to my problem. One moment I feel fine and the next i'll be uncontrollably nodding off to sleep. Most of the time I struggle with staying awake for a while and all of a sudden my sleepiness stops. Other times I actually fall asleep and the time I stay asleep varies. My mum has the same problem as me but hers is worse. She falls asleep at the dinner table, whilst talking to someone and she even recalls falling asleep in primary, being made to stand up by the teacher, then falling asleep standing up.    Other symptoms of narcolepsy - To my understanding many people with narcolepsy have vivid dreams and hallucinations. It's extremely rare for me to have dreams, I estimate that I dream 5 times or so in a year. The only symptom of narcolepsy that I have is EDS.   Sleep study results (Sorry i'm not sure what's useful, I have included everything)   Overnight Patient slept prior to lights out for 1.5 minutes.  Sleep latency: 8.0 minutes, patient perception at 30 minutes Total sleep time: 455 minutes Sleep efficiency: 83.3% Sleep architecture: Overall sleep architecture was reasonable however there were long periods of instability with fragmentation and frequent arousals SWS: 19.9% REM: Totalling 18.0% over four periods, REM latency delayed at 223.5 minutes Arousal index: 15.7/hr (1.2/hr respiratory, 0.0/hr limb, 14.5/hr spontaneous) Technical comments: High proportion of NREM Cyclic Alternating Pattern. Arousals may be over/underscored. Alpha intrusion in EEG signal. There was adequate sleep efficiency, with significant fragmentation of sleep architecture. CPC Analysis of sleep micro-architecture shows loss of high frequency coupling (33%) and increased cyclic alternating patterns (e.g. epoch 572) indicating unstable sleep. SOREMP was not observed.   MSLT Sleep was present in all 4/4 naps, REM observed in 0 sessions. Patient perceived sleepiness but that she did not sleep in any of the naps. Results are indicative of an increased propensity for sleep.   Nap 1: 4.5 min Nap 2: 4.0 min Nap 3: 1.5 min Nap 4: 2.5 min Mean latency: 3.1 min   Although EDS is the only relevant symptom that I have, I passed the government's definition of 'narcolepsy' as a mean sleep latency of less than 10 minutes was enough to satisfy the criteria. My problem now is that when I explain my diagnosis (to the road authority, college etc), do I say 'I have narcolepsy'? 'It's likely that I have narcolepsy'? Furthermore, should I push for a official diagnosis of narcolepsy or idiopathic hypersomnia?   Thank you very much for taking your time out to read this.
  10. I had a sleep study and MSLT for what what my doctor believed was narcolepsy. It's worth noting that as a kid I had sleep paralysis, hypnapompic/hypnopompic dreaming, and daytime issues like excessive sleepiness and random collapses for no obvious reason. My mom asked my doctor about the dreaming and was told it was night terrors. No testing was ever done. It continued well into my early twenties but seemed to calm down around 22 or so and only the extreme sleepiness occurred regularly. Fast forward to 2012 when it all started getting worse. My legs turn to sand with the slightest exertion or high emotional distress, my face has gone droopy multiple times with no cause, brain fog, double vision that comes and goes, and occasional "deadness" in one arm or the other for no reason. My doctor referred me to a Nuero and he did an MRI which was clear them ordered a sleep study. He said my polysomnogram was normal other than a few extra leg jerks. I did it the MSLT the next day and although my sleep latency was only 2.9 minutes average, I did not have any REM although I could remember both visual and auditory sounds that I am sure we're not there. I thought maybe they were hypnogogic episodes because I recently started having that bringing my dreams out to f sleep problem and sometimes dreaming before being asleep but again, no REM so I don't know what to think. My doctor said he still felt very strongly that I am narcoleptic but he can't diagnose that without the MSLT supporting it. He has temporarily diagnosed me with idiopathic hypersomnia although that didn't explain my other daytime issues. He said for me, the diagnosis won't matter because I have an arrhythmia and can't take the stimulants that he would normally prescribe. He suggested I take a lot of naps but I am just trying to re enter the work force out of necessity and naps won't be an option soon. I know that a diagnosis of narcolepsy might get me disability, as least, while I wait for non-stimulant meds to come on the market but I don't know how to get the diagnosis. Should I ask for a new sleep study? Does it sometimes take more than one before narcolepsy shows up or is it something else?
  11. I am taking the PSG and MSLT in 1 day to rule out narcolepsy and I'm freaking out. If I get a diagnosis of N, then I can finally plan my life effectively and put to rest all of the other BS diagnoses I've had before. If I don't get a diagnosis of N, then I'm back to square one.    On top of that, I was so scared to stop the Nuvigil and fail at work (I'm self-employed and meet face to face with clients 70% of the day) that I took it today. I plan to not take it tomorrow, but tomorrow night is the first leg of my test. I feel like I've self-sabotaged.   Have any of you experienced existential freak-outs when it comes to receiving this diagnosis?
  12. Self Diagnosing

    Hello there people! I wanted to hear your opinion on my idea.   Since the main syomptom of Narcolepsy is the early REM onset (within 5 minutes of falling asleep) I have been wondering lately - why can't we just film ourselves (closeup camera) while falling asleep and then see if our eyes are moving rapidly within 5 minutes of falling asleep? This idea came to me after my sister took a nap one day and at one point I noticed very clearly that her eyes are moving very rapidly.   What do you think of this idea? How legitimate it sounds to you? NOTE: I do not intend to self diagnose myself or take this for granted, I am perfectly aware that I first need to do a sleep study and have an official diagnosis before claiming that I have narcolepsy, but don't you find this quite logical and legitimate?
  13. May I Rant?

    Hello Narcolepsy Network, I'm a 19 y/o college student and I've been experiencing EDS for three years now. I used to just feel kind of sleepy after a long day, but now I need at least one nap each day after sleeping sometimes up to 12 hours every night. I want to make it clear that I have not been diagnosed with narcolepsy or any sleep disorder, for that matter. I know my case isn't the worst and I do not intend whatsoever to trivialize the experience of those who have actually been diagnosed.   For the last few years I've been "complaining" of sleepiness to a variety of doctors and health providers. Nobody has been taking me seriously. I was on a few medications for mental health problems for a long while, and I had to go OFF of them completely in order for my psychiatrist to agree to consider it's not just meds making me sleep all of the time. (And who ever heard of fluoxetine making people sleepy anyways?) Finally I've gotten my mother and psychiatrist to agree to a sleep study, but it took months for my mom to think it's worthwhile. She still doesn't, though. I overheard her talking today and called narcolepsy the "disease du jour." How does that make any sense?   Anyways, I've been having a rough time because I slept almost through the entire semester of a noon-time class and I'm worried my grades will start reflecting my sleepiness. This is particularily unnerving for me because I have a GPA based scholarship.   In addition, my girlfriend is giving me grief for sleeping all of the time. Half of the time she says she knows it is not my fault, but she still blames me for whatnot and is making me feel ashamed.   I know it is not the worst thing in the world to have to pay for treatment myself, but I'm a little insulted that my mom's making me pay for part of the sleep study. I know she wouldn't do that if she didn't think I needed it.   I'm sorry, I know I'm acting like an entitled brat right now. I guess I just need to get this out somewhere people would be less likely to tell me to stop complaining. I hope I haven't offended anybody. If I have, I am genuinely truely sorry.   Thanks, Emmett  
  14. 16 And Possibly Narcoleptic?

    Hello everyone, I’m new here. I’m 16 years old (almost 17), and I am wondering if I could be developing narcolepsy, probably without cataplexy, as I have no symptoms of cataplexy. I am not on any kind of medication, I’m not overweight, but it should be taken into account that I do have severe depression. Anyway, here are the symptoms that have been worrying me: Hallucinations - Frequently, I experience some form of hallucination before I fall asleep. I will feel like someone is laying their hand on my leg or back, or holding my arm, or I’ll feel some kind of animal walk across my bed. Sometimes I hear music, birds chirping, people having a conversation (but I can’t make out the words), or someone screaming my name. Once in a while, I hear a VERY loud noise like a gunshot. This is very startling and prevents me from going back to sleep. These are just a few examples. I’ve been experiencing this for years. EDS - I almost always feel like I’m in a daze. Very forgetful, too. However, I’m not sure if I consider myself EXCESSIVELY sleepy during the day, or maybe I am and I’ve just gotten used to it or something? But I’m definitely much more tired during the day than I am at night. I will readily take a nap any time during the day when I’m home. However, I have problems falling + staying asleep at night (often waking up 1-2 hours too early). I fall asleep in class once in a while, but I’m pretty sure everybody does that. And sometimes in class, I’ll be taking notes, and suddenly when I look back up, I’ve apparently missed a bunch of things and there’s stuff on the board that I haven’t seen before. No automatic behavior though, if something is unfamiliar to me on the board, I haven’t written it unconsciously in my notes either. I have NEVER fallen asleep while reading, talking to somebody, or anywhere in public, except sometimes at school, as I mentioned. But occasionally I will feel so tired that I just cannot process any information, even if I got 7+ hours of sleep the night before. This doesn’t happen to me SUPER often, just a few times a month. When it does happen, I can’t even understand what people are saying to me. It sounds like total gibberish. I can’t focus on anything. Nothing makes sense to me. I feel like I’m going through even more of a fog than usual. I always forget how to use the stairs. I put things that are supposed to go in the fridge into the cupboard, and things that are supposed to go in the cupboard into the fridge. Weird stuff like that. Rapid entry into REM sleep - Obviously this is tricky for me to say without having a professional sleep study, but there definitely have been times where I have dreamed pretty vividly when I’ve only been asleep for 30 to 45 minutes. Is that just normal? I am able to remember those dreams for days, if not months. They’re always either hyper-realistic or very bizarre. It doesn’t happen every single time I take a quick nap, but it happens about 3 times out of 5. Sleep paralysis - This doesn’t happen to me very often at all, but when it does happen it feels like my lungs aren’t working, like I can’t breathe properly, and also like there’s something in the room with me that I can’t see. This has only happened to me around 3 times in my life. Also, I feel like it's worth mentioning that my sex drive is MUCH lower than most other people my age. I'm not asexual or anything, but it takes a LOT before I feel aroused. Does anyone here relate to what I’m going through? Is it possible that I could be in the early stages of narcolepsy? I’d like to get a sleep test, but my parents would never let me. I go to therapy for my depression, and it took a literal YEAR to convince them to let me go to that. But I’ll turn 18 next year in 2016, so hopefully I can get myself tested then… Advice and input is greatly appreciated! Sorry if some of this is hard to follow, or doesn't make much sense.
  15. I've been looking at this forums on and off for more than a year I think. I just made a membership for myself. I needed to ask someone about this who has Narcolepsy. I feel kind of crazy. It was two Junes ago that I finally complained to my doctor enough about my sleepiness that she sent me to a pulmonologist/sleep specialist. Since I was a teenager I have had a very hard time with being tired and sleepy in general, my mom had my iron levels checked, all good. I was diagnosed with depression, anxiety (which is anxiety I do think is a problem) but nothing seemed to really explain things for me. I also had a full panel done on my thyroid, but that was all good. It was around 15 years old that I started having sleep paralysis. I don't know if people can typically open their eyes, but at least one of mine is about half open usually when this happens. I've seen some strange and terrifying things during those episodes in my room. When I told my family about it they looked at me like I was making it up. So I just stopped mentioning it, but it was so terrifying. I've always been plagued by extremely vivid and frequent nightmares. I wake up crying a lot. A lot of times when I wake from a nightmare I'm stuck in paralysis and the terror just continues. As I got older it seemed to get worse. I've finished my BS and during that time I loved school, but even in my most enjoyable and fascinating classes I would find myself fighting sleep. It is so difficult sometimes, so intense. At times I would be writing notes and staring at the board and suddenly I would be seeing my professor write things that weren't there and I would keep writing, although unintelligibly, these strange things. I still have one of my notebooks with those pages dog-eared. I'm afraid to loose the proof, I feel like no one believes me how hard it is. I work full time now, and it's happened at work as well, which makes me scared I could mess something up and lose my job. In fact I have messed things up before. Sometimes I go hide in the bathroom for 5 minutes and sit in a wooden chair that's in there and sleep. 5 minutes isn't exactly enough, but it helps a bit and I'm too scared to stay any longer.  And when it comes to cataplexy, I'm not really sure. If I do have it, it's not something that happens often. But I do know that while I'm practicing aerial silks I can't let anyone make me laugh, especially my best friend, she has the most affect on me, because my grip would go slack and my knees buckle and I had almost fallen a few times. And there have been a few times I recall not being able to hold up my head properly when laughing. I was on a ride with my husband at a carnival. It spins you and you go up and down, it's kind of scary for me so I was screaming, but then I knew it was funny that I was screaming and it was so much fun I started laughing and soon I just couldn't hold up my head. My husband had to support my head with his arm because it was rolling around badly with the movement of the ride. I just always thought it was normal that when you laugh you can't do things. But I've never just collapsed or anything. It's not extreme enough to stand out I don't think, so I'm unsure of whether that's what it is. This post is longer than I thought it would be. Anyways, after I got in with the sleep specialists who barely spoke to me for 5 minutes, he immediately said narcolepsy. -Unless I was exaggerating my symptoms. I don't know why, but when he said that I freaked out thinking, maybe I am exaggerating and I'm just being a big baby. Everyone else deals with life. The sleep study was set for a few months out and I kept a sleep journal, but there were a few problems, one was during those months I had no job and no school, so I kind of couldn't tell when the sleepiness was at it's worst because I just napped when I wanted and slept for how long I wanted. There was nothing demanding my time like normal life. Secondly, I also suffer from mesophonia, it's not something I've been diagnosed with -which also makes me sound crazy, but I'm afraid to even mention it to a doctor. Most probably don't know what it is. But if there is anyone in the world who has that it is me and my mom. We saw a special on TV about it and looked at each other, like, OH My Gosh, it has a name! Other people are like us! You feel intense rage at certain triggers, usually things like bodily function kinds of sounds that are repetitive. My worst are clocks, breathing noises, and basically any repetitive noise when I'm trying to fall asleep or concentrate. Anyways, with this it makes it very difficult to fall asleep even when I am at my worst sleepiness, in fact, the more sleepy I feel and the more stressed I am the more easily my mesophonia is triggered. It's like torture, that's the only way I can explain it. I sleep with earplugs now and a fan usually.  The night of my sleep study I got a call that my sister and made an attempt on her life. I was calling family members acting as the middle man because even though I live in another state, my family can only seem to communicate through me. Then when I finally was put to bed it was SO cold. My toes went numb. I asked them over the course of a couple hours to turn up the heat in that room several times. The results of that night say I didn't hit REM for 3 hours. And I took forever to fall asleep because I was so cold and anxious. The next day for the naps, I just couldn't get myself to fall asleep. It was so frustrating and I kept having heart palpitations. I would get the point of drifting off and I would suddenly become aware again because I was, like, excited that I was about to fall asleep. I was so anxious and there were these weird noises coming from the vent driving me insane. And the fan I had on for white noise started rattling. I know it sounds dumb, but my brain will zero in on those kinds of things and I just can't do anything but focus on them. During my 4th nap I finally fell asleep, I knew I had taken too long to do it, but I did instantly start dreaming. It was very vivid. It was of my cat on the counter eating something I was cooking and I got really mad and was going to jump up and yell at her to get down, but I remembered I wasn't supposed to move and woke up. Then they sent me home. I thought that if I had dreamt they would have let me do one more nap. But The results said I didn't dream at all. I was so upset. I thought I must not have narcolepsy, but there has to be some explanation. The sleep specialists didn't bother to talk to me at all after that. He just forgot about me. And the records from my appointment with him said I came in complaining of moderate snoring, which I didn't! And the sleep study confirmed I don't snore or have any kind of apnea. But I kept getting letters to have a follow up for my cpap machine.  My husband has a nurse from his work who has narcolepsy and he is convinced that is what I have. But I don't think I would ever pass a sleep study. I just don't think I could fall asleep quickly enough with all the pressure. I think my anxiety would flare up and just overturn any kind of sleepiness I might have. The sleep specialists said it wouldn't matter if I was nervous or anxious or that my sister tried to commit suicide, if I were narcoleptic I would fall asleep no problem anyway.  But also, do symptoms come and go in waves? Because I can have weeks or sometimes months where I don't have sleep paralysis, or I'll not have any severe sleep attacks for awhile and I get really confused about whether I have a problem. But they never completely go away. It's always there at least a little bit, and then it will come back full force for days on end for months. I can have sleep paralysis multiple times a night every day, I'll be fighting off sleep everyday and be like walking zombie and then one day I'll be kind of ok. I won't feel the oppressing need for a nap. I'm still yawning and relatively un-energetic, but I can get by like most people. Should I continue to try and get a diagnosis? Is that even possible for me, or am I reading into all of this too much?
  16. At The Doctor...

    So, have my son waiting to see the sleep specialist and they sit him in a dark room to watch two educational videos back to back... Cruelty for a PWN. He is of course asleep. SMH.
  17. Hi Everyone! I’m new here, though I have been lurking for a few months as I prepared for my PSG and MSLT. I’ve had EDS for almost 4 years now and am in the whirlwind of a process of getting some kind of diagnosis or answers. All I really want is to feel better!   I feel like I've had every test under the sun - iron, B12, vitamin D, thyroid, mono, Lyme's, Epstein Barr, diabetes, brain MRI. My doctor recommended a sleep study next to check for sleep apnea, so I had my first PSG on January 7. No apneas, but I went into REM sleep faster than normal (26.5 minutes after falling asleep), so they scheduled me for another PSG along with an MSLT for February 11-12. After the MSLT, the technicians sent me home after just 4 naps but wouldn’t tell me ANYTHING (not even if I had slept at all). Right before my 4th nap, the technician said, “Okay, ready for your last nap?” I was expecting 5 naps, so I was freaking out throughout the whole 4th nap over-analyzing why they were sending me home early. I figured that meant the results were clear cut - either I had already had 2 REM episodes or I had not slept at all.   I went to my doctor to get the results the week after my MSLT, and it turns out that the results aren’t really conclusive of anything. I slept in all 4 naps with an average sleep latency of 10.8 minutes, but didn’t have any REM. Apparently during the PSG I spent 16.3% of my sleep in REM which is “minimal REM sleep deprivation” according to my results report.   I had an appointment on Friday with the sleep specialist / pulmonologist who interpreted the sleep study. I told him I sleep an average of 8.5 hours per night (I have been keeping track with an app on my phone, so that’s not just a guess). He asked me about all of the symptoms of narcolepsy without calling them by their names or mentioning narcolepsy. I don’t have cataplexy, hallucinations, or sleep paralysis though. I do have an uncle with narcolepsy, but I don't know if it runs in families. So he told me that one of his patients needs 12 hours of sleep a night, and many more need 10 hours, and as long as they sleep that long, they are completely fine. He also said my results were borderline. Most people have 1 or 2 naps where they don't sleep, and normal sleep latency is above 12 minutes. A sleep latency below 10 minutes is reason for concern, so mine is in a "gray zone".   He has suggested I try to get more sleep at night and gave me a 7 day sample of 150 mg of Nuvigil to try and wrote a prescription that I can fill if it makes me feel better. The forms he gave me say, "Diagnosis: Hypersomnia". I guess my next steps are to try to sleep more and give the Nuvigil a try. The pulmonologist I saw seemed pretty knowledgeable about hypersomnias, but I am still in the process of trying to get an appointment with a neurologist who specializes in sleep.   Below are my PSG and MSLT results. I should note that for the first PSG I was on 5 mg of Escitalopram (generic Lexapro). I saw on this forum that SSRIs can interfere with REM sleep (none of the doctors thought to tell me this!!), so I stopped taking it on January 26 to prepare for my MSLT. I had only recently started taking the SSRI since my doctor thought the tiredness may be depression.   JAN 7 PSG: Time in bed: 379 minutes Time asleep: 268 minutes were asleep Sleep efficiency: 71% Sleep latency: 72 minutes REM latency: 98.5 minutes Time awake after sleep onset: 39 minutes Arousals: 24 Arousal Index: 5 The patient spent 6% of sleep in stage 1, 42% in stage 2, 29% in stage 3, and 23% in REM sleep. This is an acceptable sleep architecture. # of REM episodes: 6 # of awakenings: 10   FEB 11 PSG: Time in bed: 428.5 minutes Time asleep: 327.5 minutes were asleep Sleep efficiency: 76.5% Sleep latency: 26 minutes REM latency: 135.5 minutes Time awake after sleep onset: 74 minutes Arousals: 46 Arousal Index: 8.4 The patient spent 11.6% of sleep in stage 1, 46.7% in stage 2, 25.3% in stage 3, and 16.3% in REM sleep. This is an acceptable sleep architecture except for sleep maintenance insomnia and minimal REM sleep deprivation.   FEB 12 MSLT SUMMARY:   The patient had borderline daytime sleepiness. The mean sleep latency testing was at 10.8 minutes and normal is more than 10 minutes. No REM onset was noticed. Nap 1: Sleep latency 6 mins, no REM onset was noted Nap 2: Sleep latency 12.9 mins, no REM onset Nap 3: Sleep latency 9.2 mins, no REM onset Nap 4: Sleep latency 14.9 mins, no REM onset     Anyway, thanks if you made it this far! I guess I don't have a specific question, I'm just looking for thoughts, advice, or even just support from others who are going through or have gone through this process before!
  18. Just Wondering...

    I'm sure many of you have already addressed these topics in other posts but try as I might, I can't seem to read them all. So my questions are 1) do you ever feel almost nauseated when fighting off a sleep attack? 2) do your sleep attacks occur on a fairly regular schedule or at completely random times throughout the day and 3) do any of you find yourself stubbornly resisting your urge to nap for no good reason? Being diagnosed later in life (41) I'm realizing that I've developed all kinds of maladaptive "coping skills" that aren't serving me very well. I've noticed that I'm impatient and dismissive of my own sleepiness and urges to nap, or even just rest, because I'm afraid to "miss out" on opportunities to "get stuff done" (usually household chores on my days off.) I know that is bananas and not healthy, I'm just curious if anyone else has had to address their inner overachiever? If I try to discuss this with the "normal" people in my life they look at me like I'm nuts because they tend to think of napping as a fun luxury rather than an annoying necessity. I'm one of those PWN who can't nap without closing the curtains, getting in bed, and applying earplugs & eyemask. All of which feels like an epic waste of time, even though I know that it's self-care for my own health and well-being. Old habits die hard, I suppose.
  19. Neurologist Or Sleep Center?

    Am struggling to get a diagnosis for my son, a year after first major cataplexy episode (didn't know what that was at the time).  Been testing for everything under the sun and now got referred to a Neurologist that will not see him because he is only 17.   I am currently trying to get him seen by a Children's medical facility, but their policy is not to take new patients that are within 6 months of their 18th Birthday!!!  I think they are going to waive that, as I did take him to this facility's ER last year with an episode - case is under review and I hope to hear this week.    My question is,  are most PWN under the care of a Neurologist?   If I cannot get him in, should I just get his GP to refer to a sleep clinic?
  20. Pretty Bad Fall-Brain Contusion

    Last night I suffered a pretty bad attack and fell and smacked my head. Immediate vomiting, etc. rushed to hospital and I have moderate swelling in my brain with no bleeding, so they are keeping me for up to a week to make sure I don't hemorrhage. My PCP is coming to visit me and they are starting me on Prozac 10 mg. I'm on 5 Mg adderal 3x per day. The took my license as well. They stated they are not sure if they will up my dose til they see what the Prozac does for me (6 weeks) and they want me to do another sleep study. I don't know how they are exoecting me to live like this with the sleep attacks and not up my dose. This is a nightmare. Complete nightmare. I don't know what to do. Help.
  21. Scared

    Where do I start? About two years ago I was so tired before my finals. I laid down and the next thing I knew people where around me and I could hear and feel everything. I just could not move. They took me to the hospital and they blew out my vein trying to get an IV started and I felt it. I kept telling myself to open my eyes and let them know I'm ok. Finally I woke up and they were in disbelief. They said I had a seizure and sent me home. A year later fatigue always swept over me. I wouldn't even eat lunch at work because I feared falling asleep. I went to my PCP (at the time) and he said I would get a sleep study. I asked, no begged, for relief. I explained it wasn't me being just tired. I'm exhausted. My mind tells me I can do it but then my body just can't. Before I fall asleep I just feel fear and see things under my eye lids. Like my mind just goes nuts in numerous unexplainable thoughts. Finally I went to a clinic and I started to cry. The nurse practitioner said she would call in a crisis counselor. I ran out. I called my PCP and he said meet him at the ER. I explained my symptoms and because I was having hallucinations they sent me to a psychiatric hospital. After 3 days of sedation and hell they sent me home. I obtained a new PCP and he said because of my family history (brother and father have N.) my symptoms that I most likely have narcolepsy. He put me on 10 extended release MG Adderall once a day. Then he bumped me up to 15 mg ex. It was a miracle. My MSLT is scheduled for the 18th. But right now my medication isn't working I'm falling asleep by 1230 and when my husband tries to wake me up I can't move. My sleep specialist said to try instant when needed vs extended or a combination of both. I am allergic to provigil and Nuvigil. I told my PCP about instant and he didn't answer. I didn't ask flat out I know what these drugs are so I am scared to. So now I am back to exhaustion and I am so scared. Please any advice, comments, anything would be helpful. Everyone thinks my disease is a joke. But this is a nightmare. My body is my prison. Help.
  22. Hi!  Well this is my first post, but I have been doing a lot of reading on here as well as other sites ever since my Dr first mentioned narcolepsy. For starters I'm a 33 yr old female, fairly active (use to be military, not as active now because I just don't have the energy outside of work!) and overall healthy, aside from this! I've been battling chronic, constant fatigue for as long as I can remember, no matter how much sleep I would get at night (I average 8-9 hours).  Not only that, but I have gotten to the point where I feel like I am always dreaming, I almost always remember my dreams, and it doesn't matter how long I sleep for, I can dream.  I couldn't have been happier to finally have a primary care doctor who is listening to me and told me the fatigue & dreams aren't normal, despite normal labs!!   I have an appointment with my dr this coming Friday, but honestly the waiting to find out the official results is driving me crazy.  The tech told me that I was falling asleep very quickly (they had to restart the computer for the first nap and I was asleep before the computer even rebooted all the way).  And that it was uncommon in people who did NOT have either narcolepsy or extreme hypersomnia to dream at all during naps, let alone as vividly as I did and to remember them.  As much as I wish I didn't get a diagnosis out of this, part of me really does one comes out from this because then maybe I can start along a path of treatment and not have my lift ruled by sleep.    
  23. Hello. I'm new to the forums and I appreciate you reading/answering my first post! Although narcolepsy is very serious, the diagnosis of N would be, for me, something of a relief as it would explain my most disabling symptoms and help rule out other life-threatening illnesses my doctors have been considering. The problem is that my neurologist, who ordered the MSLT in the first place, will not diagnose me due to the relative "rarity" of narcolepsy. I only suffer from "partial" cataplexy, so my presentation isn't as clear-cut as he would like. Please take a look at my MSLT results below and tell me if you would seek a second opinion. The results seem pretty clear-cut to me, and I would like to move on past diagnosis, toward treatment, but that's impossible without my doctor's cooperation. Thanks, Jessica =) Clinical Information: The patient was referred to the sleep center with narcolepsy, and quantify daytime sleepiness. A diagnostic polysomnogram was performed immediately preceding the MSLT. There was adequate total sleep time and no other significant sleep disorder suggested. Indications include excessive daytime sleepiness. Sleep Study Technique: A multiple sleep latency test was performed. The channels recorded and monitored were central and occipital EEG, electrooculogram (EOG), submentalis EMG (chin), and electrocardiogram. Impressions: • Total number of naps attempted: 5. Total number of naps with sleep attained: 4 • Number of SOREM's: 3. This study is diagnostic for narcolepsy. • Mean sleep latency was 05:36 minutes. Pathologic sleepiness is suggested by short mean sleep latency Diagnosis: • Narcolepsy (347.0) • Pathologic Sleepiness Recommendations: • Return for follow-up and management of Narcolepsy. • Return for follow up to evaluate other causes of excessive daytime sleepiness.
  24. I had a sleep study last winter at my request due to EDS and asthma. At the time I filled out a questionnaire that led the doc to suggest narcolepsy based on my reports of knee buckling and hallucinations (when I was younger) kind of funny that all my googling of knee buckling never came up w narcolepsy. I scored a 5.5 ahi, mostly I had hypopneas so he suggested I might try a cpap to see if it helped. I also had some restless legs activity (145, 19 with arousal)...something I experience when I am awake so no surprise there. Had it for decades. Pretty much the best thing about the cpap is I have had to learn to sleep with my mouth closed and that seems to reduce sore throat/reflux. But it has not been a miracle. Fast forward 9 months I am on antidepressants due to some extreme life stresses. I have had two faint knee buckles in over a month which is less than usual and they were slight. 2 months ago I had a bout with diverticulitis and was very weak And on 2 antibiotics. At that time the knee buckling became much more was the first time I could say for sure that yes, that time it was both legs. i never fall...its very brief but it was close during that time. The knee buckling usually happens at work or when I am hurrying to my car. When I'm "on a mission" so to speak. It never happens when I power walk. It happens when I get off my bike after a very long ride. The antidepressant makes me yawn uncontrollably. I have halved the dose...and doc added adderral which strangely enough worked. I find it strange that I was "sleepy" and could not recognize it. Unless the adderral is performing some other function. I like the alertness but when you crash its big time. So anyway...does this sound like cataplexy? I asked my reg pulmo And he said no it was orthopedic (no pain btw) I have not been back to sleep doc. Wouldn't he have seen something on my overnight sleep study to make him ask for mslt. I did fall asleep in 4.4 minutes which was surprising to me. It seemed like forever.
  25. Do I Have Narcolepsy?

    Greetings,   I'd like to share my story with you all in search of feedback as to whether or not I may have narcolepsy.    I'm a 25 year old healthy and active male with no other serious medical conditions and on no medications.  I am not depressed nor suffering from any mental tragedy / anguish.  I'm a very positive and joyful person.  I have an office job and typically get about 5 hours of sleep a night on the weekdays.  During the work day, it's almost a guarantee that I will fall asleep at least twice a day at my computer.  My coworkers watch and wait for it each day and get a good laugh out of it.  Meetings are terrible; it is a rarity that I'll make it through a meeting without falling asleep.  There have been several instances when I've been in conversation with people and started to doze off.  During my "naps" at work, often I will dream almost immediately.  While I am in a "dazed" state at my computer, falling in and out of sleep, I will see strange colors.  Things that are black become green and other things will have an orange glow.  However, if I am actively engaged in something (physical activity, etc.), I can stay awake just fine and be energized for the time immediately following, but a crash usually comes later.    I don't think that I suffer from cataplexy, but, as a pretty stoic individual, I tend to keep my emotions in check.  However, if I get to a certain extreme of an emotion (which doesn't happen too often) my face and hands will start to tingle and they get this funny feeling.   I fall asleep without any problem and stay asleep.  I will normally wake up 1-2 times during the night, check the clock, and then go right back to sleep.  However, about once a month or so I will jump out of bed at 2 or 3am (well before my alarm) and start getting ready for the day.  It will normally take me several minutes of staring at the clock, trying to figure out the numbers, before I know it is ok for me to go back to bed.    As I look back on my high school and college days, I can see that I had this tendency to fall asleep then as well.  I remember certain college classes where I was only able to stay awake for maybe 2 classes during the whole semester.  I was constantly falling asleep in classes in both high school and college. I remember one time, as I was falling in and out of sleep in class, when one of my college professor's face was glowing orange and I thought, "That can't be right!?"  I would focus a little more and sure enough, the professor's face was glowing orange.   I went to get a consult done to possibly get a sleep study, and they bascially told me to go pound sand and that they are not going to recommend any further action until I sleep 8 hours a night.  Although this is ideal, my current work/life cycle doesn't usually allow this luxury on weekdays.    I know that I don't struggle or suffer greatly from narcolepsy, but it seems clear that something isn't right and that I have this tendency to fall asleep more than normal and especially at work and during meetings.  My coworkers know me as the one who can't stay awake and will poke fun at me (in good fun of course, I don't mind).  Every day it's a guarantee I will fall asleep at work (I am still able to perform my job succesfully, though).    Something just doesn't seem normal.  I appreciate any feedback that you may have for me.  Thank you,