http://www.mdjunction.com/forums/narcolepsy-discussions/feed http://www.mdjunction.com/forums/narcolepsy-discussions/feed en-us Copyright (C) MDJunction.com. All rights reserved. Wed, 22 May 2013 05:28:33 -0700 http://www.mdjunction.com/forums/narcolepsy-discussions/medicine-treatments/3811012-anyone-managing-n-without-medication#10699024 I have been drug free for approx 7 years. The first meds I quit taking was for the cataplexy. For this I have learned that I have to keep my emotions in check. My mom says the cataplexy part is worse than the sleeping part because it is very hard on a person to not have emotions. There are times when an emotion just tears me down and I can't help but giving in...especially the anger/hurt combination. I am learning to let myself laugh again. As far as the eds, I kinda live my life around the n... Tue, 21 May 2013 20:21:23 -0700 http://www.mdjunction.com/forums/narcolepsy-discussions/general-support/10522248-how-might-lyme-disease-cause-narcolepsy-or-idiopathic-hypersomnia#10676636 I cannot beleive that someone else has had nearly the same experience and come to the same conclusion as me. Three years ago after cleaning up layers of dead leaves that had been on my yard in Florida for several years, i came down with a high fever and body aches . . . .six times in eight weeks. I thought this was so strange that i documented it by dates and symptoms in addition to the fevers. It was a lot like a flu, but it ended much sooner, and did not ivolve any respiratory or stomach... Sat, 11 May 2013 22:27:12 -0700 http://www.mdjunction.com/forums/narcolepsy-discussions/general-support/312505-restrange-shaking-chaos-during-sleep-paralysis/limitstart/20#10647066 I use to get a strange symptom during my most intense symptoms. I would feel kind of like electric volts in my head and then my head would pull back and shake from side to side. It was really freaky. It was an awful feeling and felt lime a seizure but within s.p. which was odd as the body was paralyzed so tbe fact that it moved felt really messed up. It was like it took the weight of the world to move and it was like every inch of my body was fighting 100 percent. I also have jaw clenching but ... Sat, 27 Apr 2013 23:05:44 -0700 http://www.mdjunction.com/forums/narcolepsy-discussions/general-support/10647036-possible-cure-for-sp#10647036 Hi everyone. I am new to this forumn. I had narcolepsy after a bad bout of strep throat. The symptoms progressed for a number of years. I use to have up to nine episodes a day of sleep paralysis. The episodes were horriffic as they are for everyone. I am writting about what a good friend of mine and her husband convinced me to do. This is going to seem strange and I am embarassed to admit this as it is very personal but feel and hope it can help others. Very simple cure... Play al baq... Sat, 27 Apr 2013 22:25:11 -0700 http://www.mdjunction.com/forums/narcolepsy-discussions/general-support/10625908-i-could-really-use-some-advice-with-my-narcoleptic-partner#10625908 Hi all, sorry for skipping the Intro section but I really am getting to my wits end and thought I would seek some advice before I go off the deep end here. I have been with my partner for the past 3 years. He was diagnosed with narcolepsy 2 years ago and is on Welbrutrin(sp) and Provigul(sp). Now he does have other medical issues as well that he takes other meds for too. When we found out about his sleep issues we did a lot of research and started to work to make our life the best it coul... Wed, 17 Apr 2013 15:22:06 -0700 http://www.mdjunction.com/forums/narcolepsy-discussions/general-support/1081981-narcolepsy-cataplexy-lucid-dreams#10615790 well even the dr's think its highly possible that i have some kind of cataplexy, my symptoms have been experienced by others that have been officially diagnosed. http://rxmarijuana.com entwig.htm <-- this guy described my symptomes to a T.... Sat, 13 Apr 2013 08:17:33 -0700 http://www.mdjunction.com/forums/narcolepsy-discussions/general-support/10584546-how-to-juggle-work-relationship-motherhood-and-running-a-household#10609757 I’ve been married for 5 years with a very understanding wife and tensions like you describe still come up. There is no helping it. They can be absolutely understanding and supportive but cannot fully comprehend what it is like. At the same time we should realize that even if it’s not our fault, this reality is added stress to their lives. We need to be just as understanding, that being an SO to someone with narcolepsy takes extra effort and is difficult in many ways. Personally, it’s very toug... Wed, 10 Apr 2013 13:24:06 -0700 http://www.mdjunction.com/forums/narcolepsy-discussions/general-support/10351628-somethings-gotta-give-i-need-help-#10609635 . Amphetimine based medication introduces issues of reliance, tolerance and theft. I would strongly recommend Provigil (modafinil). I have been on it for a decade now. It is not addictive and just as affective as when I first started taking them. It is also a targeted neurostim, so it will not give you a feeling of euphoria or any other type of high. When I am on it, it’s a feeling of finally raising your head above the clouds and seeing clearly for once, and realizing that this is what it feels... Wed, 10 Apr 2013 12:35:30 -0700 http://www.mdjunction.com/forums/narcolepsy-discussions/general-support/2858684-any-students-with-narcolepsy/limitstart/10#10609585 I joined just to respond to your question. I was diagnosed with narcolepsy/cataplexy/severe OSA, during my 3rd year of college. I was young and skinny and the specialist was perplexed. By then I had been put on probation twice and my GPA was disastrous. With treatment and a lighter course load I was able to obtain a BSc Honors degree in Computer Science 3 years later. My GPA went from 1.3 to 3.4 for my final year. I’ve gone on to complete a Masters degree and now work as a senior analyst in a mu... Wed, 10 Apr 2013 12:17:06 -0700 http://www.mdjunction.com/forums/narcolepsy-discussions/general-support/2703952-struggling-with-narcolepsy-wanting-to-work-from#10584496 I too am really having a hard time at work lately. In the past I have always done really well with jobs where I juggled a lot of different responsibilities and had to prioritize, multi-task ect. It wasn't until I started a new job about 3 months ago where there is little to do and the attitude is spread your work out, slow down, and internet surf that I realized how important a fast paced environment is for me. Now that I am in such a slow paced job, I am finding myself making lots of little ... Fri, 29 Mar 2013 14:36:24 -0700 http://www.mdjunction.com/forums/narcolepsy-discussions/general-support/10560901-soooo-confused-and-afraid-of-losing-my-job#10584452 I am 33 and was diagnosed with narcolepsy over 10 years ago but since becoming a mom about four years ago and since starting a new job about 3 months ago, I have for the first time really noticed my narcolepsy symptoms, in particular issues of memory and concentration. Anyway, I wish I had more answers for you instead of just wanting to let you know that reading your post made me feel like I am not so alone because I have been getting very frustrated lately with my memory/concentration/atten... Fri, 29 Mar 2013 14:15:04 -0700 http://www.mdjunction.com/forums/narcolepsy-discussions/general-support/10570568-nuvigil-decreased-appetite#10570568 Does anybody else have a decreased appetite while taking Nuvigil?? I was diagnosed in 2010 and took just plain 10 mg Ritalin pills every couple of hours to keep me awake but it wasn't enough. Ive been on Nuvigil for over a year now and I've lost almost 50 pounds. Lately it seems to have taken away my appetite even more than before. It's kind of starting to scare me. I really can't afford to lose more weight but I am so nauseated that when I try to eat I can barely stomach anything. I've been try... Sat, 23 Mar 2013 14:57:01 -0700 http://www.mdjunction.com/forums/narcolepsy-discussions/introductions-personal-stories/10566260-newbie-needing-help#10566260 Hi Everyone This is my first post so sorry if I rant. I'm currently going through the diagnostic challenge. I've been quite sick for years now and the doctors couldn't figure it out, they keep saying things like it's nutritional, lupus, cfs, blah blah blah. Then one day my Gp Asked me few odd questions, have you been paralysed? Hallucinated? Answered yes though only in my early teens a handfuls of times. Slurred speech occasionally? Yes. Did you sleep much as a kid? No. Where you diagn... Thu, 21 Mar 2013 17:05:04 -0700 http://www.mdjunction.com/forums/narcolepsy-discussions/general-support/10547223-narcolepsy-vs-idiopathic-hypersomnia-diagnosisneed-advice#10547223 *I didn't intend to write such a long post, but I would GREATLY appreciate it if anyone could take the time to read it. Before I explain my test results I would like to explain a seizure-like episode I had two years ago as one of my doctors said it may have been cataplexy. At the time I was on 0.5mg of Klonopin a night for sleep/anxiety and 10-20mg of Adderall a day for ADHD. I was also going to UC Santa Barbara full time, working an average of 30+ hours a week and had a boyfriend so I wasn'... Wed, 13 Mar 2013 19:41:09 -0700 http://www.mdjunction.com/forums/narcolepsy-discussions/general-support/10449633-so-many-questions#10518740 Hi, my name is Katie. I was diagnosed with narcolepsy at 11 years old. Today, I am 18. It's been quite the journey, and I struggle often. But in my opinion anyways, the only way to deal with Narcolepsy is to study it. You need to really understand what's going on in your brain, so that you can explain to others about it. You need to find a way to simplify it, because other people often are heartless and could care less. There is a huge difference in the way someone treats you if you send them an... Fri, 01 Mar 2013 06:27:07 -0800 http://www.mdjunction.com/forums/narcolepsy-discussions/general-support/231526-memory-loss-and-narcolepsy-related#10518703 I was diagnosed with Narcolepsy about 7 years ago. I am currently 18 and I too am noticing signs of memory loss. I have a strong feeling it is the Provigil that I have been taking for 6 years. I take 200mg every 4 hours. So I average about 600-800mg a day. A very high dosage. Example: I was at school in Gym class and went to the bathroom, then I forgot where I was. I realized I was in Gym because I was wearing my Gym clothes. But then I forgot where the Gym was located. It was pretty scary.... Fri, 01 Mar 2013 06:04:26 -0800 http://www.mdjunction.com/forums/narcolepsy-discussions/medicine-treatments/10368276-nuvigil-stopped-working#10511167 Sorry to hear about your issues. My husband has narcolepsy and was just dx this past year. He's had issues with being exhausted since high school. He tried Nuvigil first and it quit working. He is now on Ritalin and it doesn't always work and he can only take it 6/days a week. We're kinda at a loss and trying to figure out if a specialist can help us...... Mon, 25 Feb 2013 21:17:25 -0800 http://www.mdjunction.com/forums/narcolepsy-discussions/general-support/10509896-narcolepsy-and-working#10509896 Hi id like to introduce myself. Im 40y old and has Narcolepsy. Im married and working full time... Mon, 25 Feb 2013 10:38:52 -0800 http://www.mdjunction.com/forums/narcolepsy-discussions/general-support/10504766-wife-of-possible-narcoleptic#10504766 Hello I am a mother of 5 kids under 11. We think my husband may have narcolepsy. I have known him since I was 14 and his sleeping habits have always seemed strange to us, but we didn't think it was narcolepsy. He seems to have every symptom of a narcoleptic. Since about 2 years ago he has been getting REALLY bad, it is so scary! Two years ago we both got EBV,(mono). That is when it started or escalated. This is so scary and frustrating, I have chronic lyme disease and currently going thro... Sat, 23 Feb 2013 02:38:33 -0800 http://www.mdjunction.com/forums/narcolepsy-discussions/introductions-personal-stories/10491222-almost-diagnosed-narcoleptic-who-works-rotating-shifts#10491222 Hi all, I am currently in the process of getting diagnosed with Naroclepsy. Basically I thought everything about me was normal and everybody else had the same issues so I never mentioned or talked about them. The older I got, the more ashamed I became about my sleep habits. Over the last year or so my issues have really messed with my life and career. I am a rotating shift worker and my job does not allow naps. I've been working here for 8 years and the last year has become unbearable. I fig... Sun, 17 Feb 2013 17:23:13 -0800