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  1. So I've been diagnosed for a few years, and have tried so many different medicines I feel like I've lost hope. I started on nuvigil.. went up to I believe 450 mg a day.. didn't do anything switched to provigil, 600 mg a day was better but still out of it then tried a combo of 600 pv and 150 nv with no change.. my mind was active, my body dragged then provigil 600 mg and Ritalin 40 mg the Ritalin didn't last more than an hour or two.. (also tried XR, lasted too long) now I'm on adderall 50 mg. And I feel stupid. I'm awake, which is why I continue to be on it, but I can't manage my time. I focus on one thing and take hours doing it. I've become slow at work because of this. And I'm starting to build tolerence. Adderall is horrible for the brain amongst other organs, and I can't be on this for the rest of my life (I'm 26) i just feel feel like I've lost hope in finding something that will help or make me feel normal. I used to be great at my job, and now I'm slower than a snail. I don't know what to do help!!!
  2. I've been on Xyrem for about a month now, and last night I had my first 9gm dose -- the maximum allowable, as I understand. Today, I have been more tired than I can remember in a long time. The Xyrem is still doing nothing for me, just like the Adderall and the Provigil. If anything, treatment seems to have made things worse for me. I used to go to bed at 11:00 and fall asleep within five minutes, much to my wife's irritation. I'd wake up long enough to use the bathroom at some point, come back to bed and pass right out until 7:00 AM, when I would get up for work. I was tired throughout the day, and would take a nap over lunch that would help a little bit, but chances were good I would fall asleep on the couch for half an hour when I got home at 6:00. Now, by 8PM, I am barely able to stay awake. Still take my brief afternoon nap, but it's been helping less and less. I don't eat, or drink anything more than water, after 7:00. Pretty much fully awake by now, I go to bed at 11:00, take the Xyrem, and spend twenty minutes trying to fall asleep. I wake up just before the silent alarm at 2:30, take my second dose, and fall asleep after another 20 minutes. Almost inevitably, and for no apparent reason, I wake up at 4:00 for about fifteen minutes, and then fall asleep until 6AM, dozing fitfully until 7. Last night, on 9gm, the only difference was that I woke up at 5AM, and...then dozed fitfully until 7, waking up at every little sound. And now, it's 12:30. I've had an hour nap already, and want nothing more than another one. I know, I know, it takes time to adapt to the new dose...but being this tired is making it even more difficult to fight this deepening depression. Medication has made my life worse, not better, and I don't know if there are any options still open. I'm communicating regularly with my doctor, telling him all of the above -- hence the dosage bump last night -- and his only other suggestion right now is to go to bed earlier. Which would mean barely seeing my wife and kids, and not even being able to eat dinner with them. Already my life feels like it's contracted down to nothing more than work -- where I am barely functional -- and sleep. Going to bed earlier would only accentuate that. Is there anything that I might be doing to inhibit the Xyrem's functioning? Could it be stress? I'm under a lot of stress right now, and the sleep issues have only accentuated that. I do have caffeine during the day, but nothing after 6:00 or so -- although when I HAVE had it later, I haven't slept any worse. Any foods that I need to avoid? I'm avoiding screen time before bed, I've tried using white noise and various podcasts to help me fall asleep, nothing seems to make any difference. I need to, and will, give the Xyrem more time. A week, two weeks, whatever. But I'm giving very serious thought to just giving up the medications entirely, titrating down as needed, in hopes of moving from "barely functional" back to "kinda functional, sometimes" . I don't even know if there are any medication options left to me if the Xyrem fails. I know that I am too tired and too depressed to make proper decisions right now, and I'm not doing ANYTHING without consulting my doctor, but it's becoming increasingly difficult to shake this "why even bother?" feeling. Any advice? Other options? Hopeful words? I'll take anything at this point.
  3. I recently was diagnosed with N this past November. I have been seeing a psychiatrist for the past 8 years for the treatment of general anxiety disorder/social anxiety disorder (I am 24). I have been on and off so many different medications for my anxiety, and had just thought I was finally finding something that worked (Pristiq) until I had a major "episode" as my doctor likes to call it. This first episode occurred around 2 years ago after I had been riding horses out in the heat. I had an extreme migraine and then began to get nauseas. After non stop vomiting I began to experience a tingling sensation and my entire body became numb. Then, as if a switch went off, my muscles started to contract and become rigid to the point I could not move them. My jaw locked up, etc so that I could hardly speak. I went to the ER and the dr told me I had experience a panic attack. Everything seemed to point to the but I then shortly a few weeks later experienced hm first sleep paralysis event. I had no idea there was even a name for what I had experienced until I told my psychiatrist. Time passed and I eventually had 3 more "episodes" like the one mentioned above. They all started the exact same way. It was a very hot day, I had been riding my horse..... Migraine....nausea....vomiting... Tingling... Then muscle contractions. It finally became a huge issue when the last one happened while I was trying to drive home, and I managed to pull over and a woman noticed me and pulled her car over to help me out my car. She managed to hear me say "911" and she called an ambulance to again take me to the ER. After the Drs examined me, they all seemed confused but again they discharged me saying it was just another "panic attack". My psychiatrist finally decided that I should see a neurologist because he Said certain things didn't seem to add up. And he forwarded my history to the neurologist... Constantly tired, sleep paralysis episodes.... These "attacks" after riding my horse... Migraines... Etc. The neurologist suggested N and I was shocked. But sure enough, after performing the overnight study and then the mlst I had very abnormal results. The only thing that puzzles me is that even though I fell asleep in all 5 naps during the mslt, I apparently never reached REM sleep. The Dr. Did note that my avg onset sleep latency time was less than a minute which he said was very abnormal. Therefore my Dr. Said I have narcolepsy. I am curious as to how this is possible if I did not reach REM during my 5 naps.... And the question my dr cannot answer is this... I wanted to know If it was possible that these "panic attacks" or "episodes" I have been having over the past 2 years have actually been a form of cataplexy. I told my neurologist I didn't think I have ever experienced catoplexy (I've never felt weak or fallen down, etc). He told me he wasn't sure if the episodes I have had could be catoplexy because, "Narcolepsy is a very strange disorder, there's not much known about it so it's possible." This just did not satisfy me. Can anyone help!?!? Or give me any insight!?!? I'm currently being treated with Nuvigil 250mg twice a day, propranolol 20mg twice a day, pristiq 100mg once a day, and clonazepam .25mg twice a day.
  4. Hi guys! I just started taking Xyrem 2.25g 2x a night for a week now, and it seems like it works for so many people but I feel like it might be making me MORE tired?? I'm so confused and sad to think that it may not be working. Before Xyrem, I was taking 30mg Adderall XR in the morning and about a month before Xyrem the adderall started to begin to make me feel almost zombie like and in a really weird state of constant confusion like I was in a daze, just concentrating on everything and nothing at the same time. Since this was happening it started to freak me out so I wondered if I would feel better off of Adderall, so I stopped taking it about a week before Xyrem, with 1 or 2 days of taking just 10mg IR to experiment when I was tired (didnt help). I then started to feel very very tired (I'm thinking it was some kind of withdrawal side effect from not taking the Adderall everyday), but I did start to feel better and more "alive" I guess you could say, not having the same zombie experience that I was having on the Adderall. I thought that the Xyrem I would be taking in a few days would help with the exhaustion I was experiencing from suddenly stopping the Adderall, and I didnt want to start taking Adderall again soon because I didnt want to experience the terrible brain fog/zombie/confusion I was experiencing before. However, once I started the Xyrem I didnt have any more confusion/fog but I was EXTREMELY EXHAUSTED, even more so than during the intermittent time I had during my "Adderall break." I dont know if the exhaustion is just still an Adderall withdrawal symptom and the Xyrem is doing its best to help me but I cant really "see" it working over the mask of the tired symptoms, or if it is just the Xyrem itself making me more tired. I have even skipped the 2nd dose in the middle of the night a few times because I didnt wake up to my alarm, and I just woke up 10 hours later. Recently the first dose of Xyrem 2.5g has been completely knocking me out and I havent been able to wake up for the 2nd dose, and I will even miss my morning alarms and wake up around 10:30am which is around 10/11 hours of sleep ( I usually get up at 5:30am for 8 hours of sleep). I really dont know what to do because I'm still hopeful that the Xyrem will work so I dont want to stop taking it, but I really dont want to start taking the Adderall again because I dont want to be a zombie haha and even "tapering off" of the Adderall scares me because I really hated being in that confused state. I just cant go on being this exhausted, its almost magnifying my narcolepsy symptoms. I would love to hear other people's experiences and thoughts as to why this might be. If anyone has thoughts/answers please let me know, thanks!
  5. I just started Xyrem (yay!) and I'm so excited because I really think that it might actually work for me and help me feel so much better and manage my symptoms. But, with this new territory comes new questions and since narcolepsy and Xyrem aren't the most common things ever, it's hard to find answers to all the questions that can come to mind. So, I hope this thread can answer some questions not only myself but others have about Xyrem and the things that interact with it. Basically, I'm wondering if anyone has the answers to/experience with and would like to share their thoughts on: 1. I know you can't eat within 2 hours of Xyrem, but can you drink tea before/after taking Xyrem? 2. Can you drink water before/after taking Xyrem? If so, what's the point of measuring the 1/4 cup of water in with the medication if you're just going to drink water after taking it? 3. Can you drink other things before/after taking Xyrem like juice, a latte, etc? Please let me know your answers/thoughts to these questions and anything else that you might want to add. Thanks!
  6. Braden Members 9 posts Posted 5 hours ago · Hey guys, so I just started xyrem on Friday. I was excited but also pretty scared because I didn't know how it was going to effect me. After drinking a fewcalorie free sodas and tossing and turning I finally decided to take the 2.25g starting dose at 330 AM. It initially worked, a sleepy drunken intoxicating feeling overcame me at roughly 4am. I felt like I could fall asleep but my stomach was growling and I was craving food just like drunk munchies so I figured at 430 am, an hour from taking my dose that I'd eat a snack(I can't sleep if I'm hungry, pharmacist said once xyrem is fully absorbed it's fine. I'm a college athlete and not exactly a tiny guy, 6'4 220 lbs) I absolutely demolished some leftover chili, then laid in bed and sometime roughly before 5am, I was out. Slept through my second dosing alarm and awoke at about 10 am with what felt like a mild hangover. Decided I would get up for the day as I felt 5 solid hours would be sufficient. Took my adderall, and after an hour I felt absolutely fantastic! My brain didn't hurt, didn't feel like there was rocks in it, felt rested, smooth, clean and refreshed. This is the result of deep sleep replenishing those crucial neurotransmitters and neural circuits that give our stimulant medications the ability to work the way they should. Anyway I went through my Saturday feeling great, hit the gym, and only napped once. I did notice my face was a little flushed all day, similar to how it was in my teenage years when I was going through my growth spurt. Was excited for Saturday night because I was hopeful to take both doses and utilize the medications full benefit. I took my first dose at 130am(wasn't drinking any calorie free soda on this occasion) and by 2am I could feel the medication taking effect, only this time it was not even close to how I felt the previous night. It was like I was taking a placebo, I only felt minor relaxation and strangest of all, more alert and stimulated(I hear this happens on the smaller doses). This dose didn't have enough strength to put me to sleep. So I laid in bed extremely dissapointed and irritated waiting for 530am so I could take my second dose. 530am came, I was literally exhausted, but as you all know, we narcoleptics do not have control over when that damn brain of ours turns on and off so as typical, i still havent been able to fall asleep. Took the second dose and laid there waiting for the magic to happen. Unfortunately, while I did feel more relaxed again, I also felt slightly stimulated and was unable to achieve sleep. Its now 1230 pm noon and I'm in bed writing this. I apologize for the jumbled words as I haven't exactly slept in 24 hours...again. I'm at a loss for words, I'm scared, dissapointed, discouraged, and heart broken by what has just happened. I understand the titrating process but I just don't know what to do. I can't take any other sleep meds and I realistically am not fit to go out and do anything today as I've been deprived of sleep for 24 hours yet again. The past week I was using 30mg of baclofen at bed time and 15-30mg of temazepam that was yielding positive results(nothing like the mental clarity and refreshing sleep I got on the first night xyrem sleep though) Could I already have a strong tolerance to xyrem given that baclofen is also a GABA B agonist with a similar mechanism of action? What about the calorie free soda I was consuming the first night I took xyrem? Could the soda have increased its bioavailability and thus, made it hit me stronger? I'm not scheduled to titrate up to 3g until Friday. Has anyone else had a similar experience to this? Any other larger than average narcoleptics out there who need an elephant dose to fall asleep? I don't exactly have a virgin brain when it comes to sedatives. I don't consume alcohol anymore, but in my early college years I was notorious for having a pretty strong tolerance. The past few months I've been on as much as 75mg of temazepam to produce sleep. Tried 10mg ambien, then had to move to 20, then as much as 30mg! All spaced hours apart of course. Lunesta the same thing, took close to 7mg one night and I didn't sleep at all! Even ambien cr failed(also made me feel like crap the next day) Tried trazodone, but it made me feel like I had a tequila hangover and someone punched me in the face the next day(anti-histamines do that to me) remeron had the same effect and worked against my adderall, mirtazapine has a half life of 20-40 hrs, so there ya go Odly, the only successful sleep I've ever had was when I mixed 10mg of ambien with 2mg of Lunesta, slept the whole night. Baclofen with the temazepam showed some promise the last week too. Anyway guys, if you read through all of this is there any advice you can offer? The pharmacy said I could drink calorie free soda when I take the xyrem so it must not have the big of an effect on it(although I have heard it could alter the ph in the stomach) I don't what to do. How can something like that go from sugar to crap in 1 night!? I'll likely have to wait until it's time to increase my dose. Maybe try taking it with a soda again tonight? Maybe I'll finally be able to crash given my current state of sleep deprivation. This insomnia has been a common cycle the past year that got worse once I started stimulants. Insomnia got worse as stimulants had consistently diminishing returns on their effectiveness. This cycle all starts with a decent nights sleep, then boom, I can't sleep for two days, whereby I finally crash, sleep for a day and a half, then begin the whole cycle again. It's completely incompatible with school, sports, life in general and has sent me to the ER 3 times this past semester with panic attacks accompanied by high blood pressure 168/116 on one occasion and unbearably painful insomnia. Had to withdraw from my classes this past semester to focus on my health(I'm a 3.7 student 😔. Got the sleep study, got the N diagnoses, got the xyrem, got hopeful, and now, as typical, I'm let down, dissapointed and scared. Please, any advice would be helpful. It's been a very rough year. One positive I noticed, everyone keeps complaining about the god awful taste, but honestly, if the taste is a major factor in you not taking the xyrem your being over dramatic and ridiculous. I've swallowed many peoples meals and pre workout supplements that have tasted far worse. ***update*** I'm going out of my mind with worry right now. Slept an hour tops. 2-3pm. I'm afraid to take xyrem tonight because it might fail me again, and if it does, that's 48 hours without sleep, I'm scared, I've been bed ridden all day
  7. Help: What helps you stay awake? What wakes you up when you fall asleep? Hi guys, I was diagnosed with narcolepsy 10 years ago and staying awake has been a daily struggle for me ever since. I was prescribed adderall to help me stay awake and concentrated during school and college, but never really felt like it was a good solution to my problem. I have been doing a lot of research on the topic and presented my findings to a large pharmaceutical company, who now gave me the opportunity to pitch a product to them. I want to present the best possible solution to them to increase our chance of finally having a product that can help us, which is why I need your help. If you could take a minute to answer some/all of the below questions, I would really appreciate it! Thank you! What helps you stay awake? What situations are you most likely to fall asleep in? When falling asleep, what wakes you up? Sound? Touch (e.g. vibration)?
  8. 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!!
  9. I have cataplexy. I lose muscle control on an almost daily basis. I can't take antidepressants because they make me manic. My doctor is extremely reluctant to put me on Xyrem and I agree. I want to be able to manage cataplexy attacks to the best of my ability. Since medicine is out I am trying to discover and learn alternative methods that will allow my cataplexy to become manageable so that I can function. What I know: The good: Healthy diet, daily exercise, and consistent sleep schedule are effective tools for manageable narcolepsy and cataplexy. They're also great tools for a healthier happier life. They also have proven to not be enough because when I try to eat better/exercise more the energy drained to enact that behavior usually causes a more pronounced cataplexy attack - usually because I'm happier doing it The bad: Limiting emotions, especially joy and laughter, will decrease my catoplexy attacks. This is not an option. My doctor berated me because I tried this approach. He told me its not worth it and he's right. So: I feel like I'm in a paradox. Does anyone regulate their cataplexy without medicine? How?
  10. So I just had the most gut wrenching phone call with pharmacist, I'm sure plenty of you know the kind. I'm in a very tough position right noe. I'm prescribed Nuvigil 250mg for NwC. I just started a full time job that pays me better, yes, but is 3rd shift. kind of a perfect storm if you get me. I had 4 miscrosleeps on the ways home this morning, for example. Better pay not withstanding,i it's not anything that could allow me to pay 607$ for a medication I desperately need. The 150s don't pull the weight I need them to, so I'm terrified Ritalin and similar won't either. Maybe I'm just freaking out but I'm almost crying rn and thank god for autocorrect cause my hands are already getting a bit noodly. Does anyone have any suggestions or advice? Alternate treatments anything like tha?t even a little reassurance would be good lol Additional info: In the US, dx'd and prescribed by sleep doc, prior to insurance cleating it was 887 or something like that so. I have a high deductible and it's incredibly inconvenient situation because I'm trying to move out, and I can't just throw away 600 dollars of a biweekly paycheck and save up at the same time. So, yeah. Does anyone have any suggestions for other medications to try as well as how bad the side effects and price might be?
  11. So, has anyone else had this problem? I registered for the site on my phone and never have a problem signing in! However, the second I tried to switch to my computer and sign in, the site not only tells w my username doesn't exist but that my email doesn't either! But...clearly it does? My phone has a huge crack in the screen that makes typing difficult. Has anyone else had an issue switching from mobile to desktop before? So unsure of how to fix this.
  12. Hello, I would like to present a case to you all. I'm looking for other's opinions on what I may be experiencing. My name is Jared Spencer. 21 Years old, Newfoundland , Canada. So basically I'll jump right into this and you guys and gals can give me your thoughts. Also; A download to video's for further examination are below I included two of the many I have. The Beginning: When I was about 14-15 Years old I started to experiencing fall that where not of a normal nature, and it seemed as though the biggest trigger to these falls where being startled. Now the thing is while falling, I knew that it wasn't normal because I would lose total control over my body. to anyone around me it would appear that i had fainted, but in reality I never once lost conciseness. & though totally conscious and watching the ground grow closer to my face with the thought of " This is going to hurt " . my arms, legs, neck, speech, hands where all paralyzed. After many falls of this nature I could see the trend immersing and it always had to do with being startled, weather it be walking down the hallway in school and someone tap my shoulder, or standing at work catching someone out of the corner of my eye, I would hit the floor. unable to regain motor function until I hit the ground. First Diagnosis: After two of three trips to the hospital from drastic falls, some of which I knocked myself unconscious from the impact with the floor. I spoke to my family doctor who proceeded to tell me it was due to my Anxiety. from the age 14 to 17 I had tried many different types of SSRI's including Prozac, but did not find any help with the feelings I was experiencing. Now at this point in my life I was finding it very difficult to describe what I had been experiencing to doctors, and the embarrassment of this took me far enough to blame the medications saying they where making me " Faint " . which was not the reality as I never drew a blank while tumbling to the ground. At the age of 18 I started experiencing Hallucinations and other strange phenomenons. such as very restless sleeping, insomnia, acting out my dreams physically, and constantly jolting myself awake before finally falling into a slumber. although never a well rested one. My doctor then refereed me to yet another Psychiatrist whom diagnosed with with " Paranoid Schizophrenia". though I wasn't happy with that diagnosis I took it and ran with it ( not literally, running is a thing of the past with me, my legs tend to " Lock up " whenever I do that haha! ). Recent Times: Since that time I have been off all medications for Mental Illness for much over a year. after noticing that alas the medications where once again , Not helping with my situation. I had started a new job near my home but was finding it difficult to keep myself from these falls, which where getting more and more frequent . I said enough is enough, I wanted my life back. So once again back to my family doctor I went. But this time older, wiser , and with video proof of what was happening to me. He told me straight up that " Anxiety and mental illness would not cause this, I will refer you to a neurologist." along with being shocked himself from the nature of the falls. I Seen the neurologist this past January and just recently this week had my MSLT study as he said it seemed as it may be Cataplexy but he was weary because of the " Violent nature of the falls"; He noted that it seemed like it was " In the crossroads of Cataplexy and Mytonia Congenita" Saying he had a very interesting case on his hands, but would do what he could to help. I am still unsure of the results from the test but as of the point that i left they informed me that on the first three nap's , though I fell asleep they did not see me quickly falling into R.E.M sleep. I am currently waiting awaiting an EMG. Confusion/Grief: So basically these are the things that I have been experiencing which made me interested in posting here because I have seen some things that are very similar to what I have been experiencing. Some of the things that trigger me include : Noise, Sudden noise of any form. From a car's horn, unexpected talking.People walking behind me.Catching something / someone out of the corner of my eye, Or walking around a corner and seeing someone.Extreme emotions like : Anger, Excitement, Fear.Cold Weather causes my legs to become very weak.Physical exertion like running, also cause my knee's to buckle. Making walking very difficult, I find myself holding on to objects as I walk to steady my balance and keep myself upright. I also have a lingering anxiety, which has worsened lately ( With my other symptoms ) . I have always been very easily startled, even as a child, it sends a Jolt through my body and all my muscle's tense up like you would from watching a horror movie where something pop's out of no where, but it's not just to a scary film it's all day every day in my life, and I have always been this way. Between the bell ringing while I was in high school sending me out of my seat. to more recent times where any extreme input or stimulus causes it. it's almost like my brain overloads and my nerves short circuit causing me to jolt. and that's where my problems really began, with this happening so frequently that, The phone ringing can cause me to fall over from the fright. So due to these things happening I now have a very hard time with getting out, and doing anything. My doctor has taken me off work indefinitely because with all the falls I became a liability to the company I was working for, and myself. I have also developed a fear of walking down stairs ( I pretty much have to scoot down them on my behind now ). and walking in open spaces where I have nothing to hold onto is extremely hard because my knee's buckle and shake . Turning corners are a task and I always try to take the far outside because I can't risk someone starling me because it's an inevitable fall. So going into public has become a task for me lately, unless I have someone who can come along and help me. it almost seem's like the anxiety of it happening has become a trigger in itself Post Script: I Have noticed that alcohol seems to help me out with my symptoms, which is where I start feeling like a crazy alcoholic because I know I can't justify wanting to drink every day ( which I do not. ) it seems like it dulls my senses enough that I don't feel weak in the knee's & I don't get startled as easily, which means I don't fall onto my face or behind from someone coughing in the next room. I have also noticed that no one else has brought up alcohol ( to my knowledge , I have only know of this site for the past few days.) Though I always feel absolutely terrible the day after, and no I'm not talking hangover, I mean the symptoms are worse. Even harder to walk, and obviously on edge & much easier startled. Thank you for reading, Your Input will be very appreciated. Signed: I just want my life back. Fall.wmv
  13. Hey all. My name's Niks, I'm living an exciting life of stupid video games, blogging, working part time, and then sleeping the rest of the time. I just got my diagnosis this year for Narcolepsy (with Cataplexy), I think--my neurologist is super vague, but he prescribed me xyrem and nuvigil, which I think solidifies the diagnosis from him. Anyway, it's been a rough year. I don't feel confident enough to go back to college (I slept through most of my classes last year) and a lot of people in my life don't understand what its like. Hell, I barely understand and I've had symptoms since I was 10. Uh, okay but more on that later! I'm nearly 21 (November 15th! So close!!) And I have a wide variety of interests including art, writing, blogging, activism, and all kinds of other this and that's. I'd just love to have someone else to talk to who understands!
  14. I was just wondering if there was anyone out there in the forums that had applied for, or gone through an internship for something after they were diagnosed with narcolepsy? I am struggling through some post-secondary courses for Museum and Heritage Studies, and there are many internships available to students in the area. I know that they can be valuable experiences, but I have no clue how to go about applying for one given my personal restrictions as a PWN. Anybody have experience with this or advice for me?
  15. I recently changed the doses of both my medications: Xyrem - went from 4.5 twice a night to 3.5 twice a night (I was unable to wake up and use the bathroom and was wetting the bed on the larger dose - at 24 that's pretty freaking embarrassing and causing severe emotional stress) Adderall - went from 10mg twice a day to 20mg twice a day Now I am experiencing a lot of lightheadedness and confusion and it's becoming really obvious when I'm at work. I can't seem to communicate my thoughts properly anymore - I've had to retype much of this post because the words I want to type aren't the words being typed. I've experienced this before, but never quite so intensely and for as long. It's been weeks and it's not getting any better. I feel more exhausted than ever and I don't know if it's being caused my the medication or the disease. Should I consider re-doing my medication again? I really need to get this figured out. Any advice is appreciated!
  16. Hey! This is probably really over done and common for new members to instantly post about the possibility of them having narcolepsy, but I'm cliche and tacky so I'm doing it as well. I'm 16, male and in highschool. I've always had issues with sleep and such and I've never thought about it until recently when I failed a bunch of my classes in school because I was so spaced out and drowsy in school and comatose at home every day. On Christmas Day I slept at my cousins and we got up early the next day to go to the beach, and we all got ~10 hours of sleep. That typically isn't enough for me in the least and hours later at lunch I was falling asleep while eating chicken strips... My aunt made a comment saying I probably had narcolepsy. I eventually looked into and realized it's literally nothing like it's portrayed in modern media. And honestly things just clicked. For organizational sake I'm just going to make a list of examples of symptoms... I'm so tired that I'll sleep for 16-18+ hours and never feel betterI have close to no friends any more because instead of hanging out with them I choose to stay in bed and lounge around because I don't feel energized enough to keep up with people.I went from having a 4.0 to struggling from getting F's because I would daydream in class and zone out all the time.I can't focus and I feel foggy and lethargic. I have the hardest time articulating my words because I struggle in remember what I was saying/what I was doing (I used to be praised by my teachers for my linguistic abilities.. )I thought I had depression for a really long time because all of my old hobbies no longer seemed enjoyable... rather they were a hassle. My old friends literally ask me if I died this year because I look vacant and we haven;t talked in months.I wake up a lot at night and fall back asleep.I have intense vivid dreams... I dream every night and they're very... real.I have very bad sleep paralysis regularly and it's terrifying.When I fall asleep I feel what like I'm spinning/ vibrating (People explain this feeling when they TRY to have sleep paralysis/ OBEs) and I fall asleep dreaming.I'm pretty sure that I've taken quick 5-10 minute naps and I've dreamed during them.I have multiple dreams per night (not sure if this is relevant)I think I have cataplectic episodes... I thought initially that cataplexy was when you collapse and fall asleep...apparently not exactly. For the past couple years I just recall when I laugh I feel so faint and like jello that I want to/start hunch and crawl/sprawl out on the ground. Or when I'm sitting(also standing I suppose) my head instinctively drops. I thought this was normal until recently I asked my sister and she just laughed. However this year I think I had a bigger episode; I started to think I couldn't express emotion...(I was in my first serious relationship and I was EXTREMELY giddy all the time and when I laughed... I laughed hard.) I was in science telling a funny story when after laughing for a while every stared at me and I wasn't laughing anymore, I couldn't talk for a few minutes and I just kept thinking "This is funny why am I not laughing... I can't talk to them..." I felt very lethargic and confused. I couldn't communicate with them and I just sat there motionless hunched on my desk. My friends told me that I was frowning and I looked very depressed. Then literally the same day I found out that the person I was dating was cheating on me and I got really depressed, and it seemed to exasperate this feeling of being unable to express emotion at times... In the library I had written this paper all night and didn't get very much sleep and I found out I did it wrong and started laughing pretty hard (I was almost hysteric due to lack of sleep... I got like 2 hours of sleep) and I got on the floor and I couldn't talk again for a few seconds. Another time I was at a friends birthday and we were wrestling in a tournament, and the kid I was wrestling punched me in the face and I got PISSED. I was already on top of him and I tried punching him but I couldn't make a fist and I just ended up laying on top of him... I felt very very lethargic. I honestly thought this was ALL normal but I guess it's not..I'm not sure what hallucinations are like but I woke up one morning and thought I had heard my dad and brother whispering negative things about me out side my bedroom (they weren't), I've also seen cats in my house at night that aren't the color we own. That's what I can think of as of now... This all started around the time I turned 15 (last year around this time). I thought I had a thyroid problem and I don't. I'm really hoping that this is what I DO have and I'm not making it up and I'm not just being anti-social and lazy. It's weird though because some nights I have bad insomnia where I can't sleep for a few hours after waking up... so it makes me doubt this. I have an appointment with my doctor in a week with the reason being "I'm always very tired", I don't want to be the one to suggest Narcolepsy and be wrong, and subsequently seem like a hypochondriac. I really don't want my doctor to blow me off and say that it's just puberty or that I need to eat more or something like that. What do I say that would imply to refer me to a sleep specialist? thank you so much for reading this! I'm stressing out and looking for answers!
  17. Has anyone had the awesome bed wetting side effect happen with Xyrem? It happened once and the nurse said usually it is a one-time thing, so I kept going. A week later, yesterday was the first time I woke up on my own for my second dose AND before my wake-up alarm, which was really exciting for me. Last night...it happened again. The nurse’s line says they suggest talking to the doc about going to a lower dose. But this dose has been the most successful for me, except for the whole incontinence thing. Any feedback? Has anyone encountered this and changed doses with success? I am at the end of my rope here. I am looking for a new doc, because mine kinda sucks, so I don't know what to do for the next two weeks until I can get in to see the new doc. Please HELP
  18. I am afraid of losing my boyfriend. He has been so supportive, and has been right there for me during this whole process. But my cataplexy is getting worse. This, along with college, job searching, and his personal going-ons, I have been losing in the communication department. I had a fall the other day for the first time, knee gave out beneath me. It scared him. And it scared me more. And then yesterday while we were talking about some stressful topiocs, I froze when he asked me a question. It was simple, and slightly unrelated, but important, and I just lost it. Froze, became disoriented, confused, silent. I could see that this frustrated him and I wanted so much to fix it. I tried to apolagize, but he said it was fine. It wasn't. I don't want to blame this on cataplexy. But it happens a lot. I get drained after social interation. I tense up to any kind of confrontation and utypically fall asleep shortly thereafter. The slurring overcomes me. And I just screwed us over in the communicatioins department. I do not knnow what to do to help make it easier to communicate these difficulties. I do not want to lose him, but I know that it is hard being in a relationship with someone like me. I know that. But I will do anything I can to make it easier. SO, I need tips, hints, help, anything. Doc is abou to switch me to Xyrem most likely after a 3 week trial of a double nuvigil dose that didn't work out so great. Maybe that will help with any kind of cataplexy slurring, and when that goes away I can focus on any other underlying things. I just don't know how to move forward when my brain just quits on me when I need to be 100% present.
  19. I'm on 36mg of Concerta this week while my doc tries to figure out what stimulant to add to the xyrem I should be starting in 1-3 weeks, But I feel horrid. My anxiety is terrible and because of the constant worrying I am very down. I know anxiety can be a side effect of this drug, but anxiety so bad as to cause depression??? Has anyone experienced this and what did you do? Quit taking it? I'm afraid it might be doing more harm than good. I am supposed to go to class today but stayed up late last night attempting and failing to get work done. I was so angsty I couldn't stop to focus. And then trying to sleep was a nightmare with my mind all over the place like that. Help! Alternative to Concerta? I tried Nuvigil and as much as I disliked it, I'd rather go back to it than this!!! Even though Nuvigil didn't do anything for me. This is crazy, every drug I try is supposed to help and ends up screwing things up again. I've already messed up 2 weeks of class, I don't want all of this to end up hurting me so bad it shows on the transcript but as of now it's inevitable. This is horrid. [end rant]
  20. Dear members of the Narcolepsy Network, I've been pretty seriously ill for several years now and my neurologist (a sleep specialist) recently suggested I might have narcolepsy, (with or without cataplexy). I've done lots of reading about narcolepsy and in many ways it could fit - EDS, constant exhaustion, episodes of sudden muscle weakness (previously thought to be epilepcy, but now considered potentially cataplexy), and what appear to be hypnagogic hallucinations, to name a few examples. But what I'm trying to understand, and what countless medical journals and 'advice' websites can't tell me, is how really 'awake' or 'fully conscious' a narcoleptic is before they are diagnosed and being treated. While obviously EDS and exhaustion can both render an 'altered state of consciousness', in which people go into forms of automatic behaviour and semi-automatic behaviour (both of which happens to me), I'm trying to understand whether people with untreated narcolepsy ever just feel 'normal'. Just as there are points in the day when I'm far less sleepy than at others, there are points where I feel more 'awake' than at others. Additionally at the moment I'm being trialled on Modafinil, which is reducing a fair bit of the 'sleepiness'. But it's not making me feel more awake - I'm still groggy, confused, and more like an animated corpse most of the time than a real human being. I'm just not falling asleep or being at that point just before falling asleep as much. I can't recall the last time I genuinely felt properly awake, alert and mentally able - completely present or in the moment. I remember from childhood what that is/was like, but I can't recall the last time I experienced it. Comparatively it feels like life is more like a half-way point between being 'awake' and 'asleep', and often it feels more like dreaming. Except that some dreams are so vivid they feel more 'real' than reality. Have any of you any thoughts on how this does/ does not fit with narcolepsy, and/or have simliar experiences? I'm trying to get a sense of whether this is something other people who have gone on to develop narcolepsy have also felt or experienced, or if I'm being led down another rabbit hole! Thanks in advance!
  21. Hey, I am new to this forum. Ive been dealing with N (without cataplexy, but with halluinations) for about a year now. I am 26 years old and recently fell off of my parents group healthcare plan. I switched to the COBRA extension plan but cannot afford the $900 a month premium. I cannot afford this on my smaller self-employed income. I keep getting denied for every single application for private health care. Even when I ask them to exclude coverage for narcolepsy, I still get denied. (Also it became very evident to me that even insurance underwriters have no earthly idea what narcolepsy is or what it means, but that's for another topic). I have not been without health insurance for 6 months and I do not fall at or below the national poverty level, so I do not qualify for govt assisted health programs or medication plans (from what I can tell). I have been trying to ration out my medication and today I fell asleep at the wheel due to not a high enough dose of nuvigil (been cutting my nuvigil 250mg in half) and almost flipped the car. My focalin XR for midday has completely run out. I know my best bet is probably to pay out of pocket for my meds right now because rationing clearly isn't working. My questions are: Has anyone else dealt with situations like this? Does anyone know of a way to get medicine for cheap if paying out of pocket? Does anyone know how to get private health insurance while havinv N? Does anyone know of cheaper meds? Thanks in advance! Any feedback is good feedback!