Narcolepsy network research

Common Questions and Answers about Narcolepsy network research

narcolepsy

589816 tn?1332976771 Does he have narcolepsy with cataplexy? Or is it without cataplexy? Xyrem is a drug approved for treating narcolepsy with cataplexy, and it's taken at night in two separate doses. It combats one of the most important symptom of narcolepsy, aside from cataplexy: fragmented night-time sleep. Just to give a bit more background in case I'm catching you off-base.....
668092 tn?1225464120 I wanna be able to talk with others that have this condition because I feel like no one understands what im going through. I also have a condition called Cataplexy which is very rare and I have narcolepsy. If you wanna learn more about what I have I made a site that explains everything I have and what it is, http://www.piczo.
535822 tn?1443976780 A new review published in the journal Public Library of Science ONE confirms that Pandemrix, a swine flu vaccine produced by drug giant GlaxoSmithKline (GSK), is responsible for causing an up to 1700 percent increase in narcolepsy among children and teenagers under 17 years of age. Based on their findings, a cohort of scientists has determined that narcolepsy rates increased significantly following mass vaccination campaigns with Pandemrix.
Avatar f tn Look up symptoms of Narcolepsy. Sounds wierd, but it is very hard to diagnose, and that is one of the major symptoms of it. It usually (but not always!) shows up between ages 10-25. Symptoms include- Cataplexy (loss of muscle control): People with narcolepsy often have a sudden loss of muscle control while awake, usually triggered by strong emotions, such as laughing.
Avatar f tn Well testthe kind of sleep you are in while you sleep can test for Narcopelsy how long has this been a problem? I have been diagnosed my self with narcolepsy. Can fall asleep any where anytime!
Avatar n tn He was not sure I had crps though bone scan suggested it, He was talking about possible synvisc injections in 6 weeks, last resort is an epidural. You see I suffer from narcolepsy/cataplexy and pain triggers off muscle tone loss of total body so even upon inserting the injection I would go limp hear everything but cant move., part of the cataplexy.
Avatar n tn This is known as narcolepsy, there are treatments for it, so perhaps you can do some research on that topic and see if it matches up with you, and also the info sites will tell you the kind of doctor who is best equipped to help you with this. Sorry I don't know much more than that.
Avatar f tn I was diagnosed with narcolepsy approx. 5 yrs. ago. I haven't gone for another sleep study since, nor has my doctor seem to ever remember that I have narcolepsy. I am his only patient with narcolepsy, and if I ever end up in his office, it seems like he always forgets that I have narcolepsy. I don't believe he has a good understanding of this. Any suggestions. I am in the process of trying to switch my doctor, but in the meanwhile, I have been more tired lately than usual.
Avatar f tn Narcolepsy is a CNS disorder and is thought to also be caused by an autoimmune disorder. Causes: current thinking is that a group of cells in the brain responsible for sleep-wake behavior is damaged or absent. (gosh do you think the MS lesions might also damage this area for people unlucky to have both!) Tests: The spinal fluid of most patients with narcolepsy shows the neuroprotein lacking or deficient. The neuroprotein is "hypocretin".
Avatar n tn Unfortunately the only way you can change you facial muscles in excercise, that took me years to figure out!! There seems to be little research into bells palsy as no one seems to know the cause. Did you have an epidural? If yes I think you may not have 'bells palsy' but damage to the nerves caused by medical negligence. I have researched this for 11 years and although only a lay man with no medical training I believe you need to demand some answers.
Avatar n tn there is a woman that has visual lasting effects and has spoken publicly....here is a link to some of her info I am sure with more research u can find more info regarding her and the condition. http://en.wikipedia.
Avatar f tn s done a 1000 sleep latency tests and never had anyone fall asleep during all 5 nap times, fall asleep so quickly and dream too. She mentioned narcolepsy and hypersomnilance. Sometimes I Amos tired in the morning that I can't open my eyes or move. What is going on? I'm very frightened. And, I just got diagnosed 2 days ago with bad laryngopharyngeal reflux. Any thoughts are appreciated.
535822 tn?1443976780 New research reported by Reuters reveals that whooping cough outbreaks are HIGHER among vaccinated children compared with unvaccinated children. This is based on a study led by Dr. David Witt, an infectious disease specialist at the Kaiser Permanente Medical Center in San Rafael, California. As Reuters reports: (http://www.reuters.com/article/2012/04/03/us-whoopingcough-idUSBRE832...
Avatar f tn I've never really heard much about mycoplasma infections. (And I'm a nurse.) I just saw a rheumatologist a couple months ago who made the comment to me "all these things could go together." It was the first time I'd heard a doctor actually say that though that's been my thinking all along. It would seem to me that certainly sleeping issues would go along with lupus and fibromyalgia!
Avatar f tn Narcolepsy! i am a 28 year old male who literally just started having the exact symptoms you described about 8 months ago. After several test and doctors visits i was diagnosed with sever narcolepsy, with catalepsy. Its common for the symptoms to come on suddenly between the ages of 15-30. I encourage you to research narcolepsy and if it has the ring of truth go see a neurologist.
Avatar m tn She needs a true chiari specialist to help guide her,....we do have a list of the members Drs for her to use to research to find the Dr just right for her. Also she needs to educate herself as to what the Drs should be doing for her so she knows a good Dr when she meets them...there r related conditions to chiari and they will need to be ruled out. The bells palsy may be something related to her chiari I have heard of someone else that did have it with chiari as well.
Avatar m tn I was diagnosed with Bells Palsy in 2000, and given the same prescription, but with a lot of research and asked the doctor if it could be trigenimal neuralgia. Turns out I did. However, in 2010, I had what seemed like a stroke, but found out this Monday was MS. I had a second seizure and lost sight in my left eye. No bueno. Don't ever settle for what they tell you. You need to always search and ask questions.
Avatar n tn d give you a link. There is also info on the narcolepsy network site that you should be able to find if you google their name and cataplexy. Feel free to message me with questions on ruling that out (I have it). Heiferly.
488264 tn?1226520307 I am in my forties, female, and a nearly lifelong sufferer of sleep paralysis. So many times I have tried to research the problem online, and the general ignorance, lack of interest and false conceptions of this actually quite common condition is disturbing. What annoys me most is when it is connected to anxiety, mental states, youth, etc. I have endured this problem for decades, and it is worsening as I get older.
Avatar f tn //www.sleepfoundation.org/narcolepsy/what-narcolepsy/are-there-different-types-narcolepsy She has a hard time staying awake during the day without medication. This is called type 2 narcolepsy as well. https://www.mayoclinic.org/diseases-conditions/narcolepsy/symptoms-causes/syc-20375497 My sister in law as I said takes medication that allows her to be functional during the day and go to work and drive and all of that important stuff.
Avatar f tn I am diagnosis with narcolepsy and have had symptoms for 5 years now. I have been taking 500 mg. of nuvigil for over 2 years. Plus, 60 mg of adderall a day. My symptoms have slowed down a little, but I have to take 2 naps a day and not drive anywhere. I have sleep studies twice a year and it seems to get worse each time. Its very aggravating to me! It seems like something would help. I see a team of specialists at Vanderbilt, but I need something else, but what? Anyone have any suggestions?
1287446 tn?1313947638 Hi everyone. I am not familiar with Narcolepsy or sleep disorders in general but my sleep has always been different. Typically, I fight daytime sleepiness with caffeine. In prior years, the caffeine has been a lot but I’ve lowered it significantly.
Avatar f tn I have Narcolepsy- My vitamin B 12 level is 235- should it be higher for my condition?
Avatar f tn Although the pt has RLS and PLMS, the arousal associated with these do not likely explain EDS- given a short overall sleep and REM latency, consider narcolepsy clinically. I had 156 arousals, 110 spontaneous, the rest due to limb movement. I also spent most of my sleep time in sleep stages 1 and 2, whith REM episodes scattered randomly. I had no time in stage 3, and when I had REM sleep it was from wake to REM with no progression through the other cycles.