Narcolepsy network conference

Common Questions and Answers about Narcolepsy network conference

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.....
572651 tn?1530999357 A while back I entered the patient scholarship opportunity for the Social Media conference at Mayo Clinic. You may have even been one of the many people who ‘liked’ me through Facebook. They awarded three scholarships for the patient/caregiver and one companion to attend the conference. I was not one of the three people selected to attend, but I did reach out to the winners with my congratulations.
Avatar m tn Is there any way to do conference calls on skype? I've never tried to connect with more than one person at a time.
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.
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 f tn The Pull-Thru Network has a great list-serve for families of kids, and adults, who were born with either HD or imperforate anus - or have some other kind of dysfunction. There will be special programs at their St Louis national conference this summer. Check them out at www.pullthrunetwork.
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.
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.
Avatar n tn The combination of this study and my first MSLT nap study produced a perfect pattern for diagnosis of Narcolepsy. Has there ever been a study to look at the coorelation between the 2 diseases. Would many CFS sufferers be classified narcoleptic if they took the appropriate test? Narcolepsy leads back to hippothalmus and lack of production of hypocretin/orexin(?). Seems like all things lead to hippothalmus. Thank you!
Avatar f tn i was wondering if i should be tested for narcolepsy, or if diagnosed with narcolepsy would they prescribe me to something similar to adderrall? if this were the case, being tested would not matter much if they would give me the same medications anyways. I just dont want to be misdiagnosed and on the wrong medication for the rest of my life.
295756 tn?1247125892 ll be seeing in August actually said she had attended a conference on Fibro/CFS just a couple of weeks before she interviewed me to decide if she would take me as a patient. Hope all goes well.
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 m tn Yes, narcolepsy can result in disturbed nighttime sleep. Narcolepsy can only be diagnosed with a multiple sleep latency test during the day (usually preceded by an all night sleep study). Dr.
1745492 tn?1320198340 My husband was diagnosed with severe obstructive sleep apnea and narcolepsy about 5 years ago and the narcolepsy is under control with 200 mg of Provigil. He had hypnogogic hallucinations, body jerks when falling sleep, imaginary conversations with no one, talked in his sleep, fell asleep driving, talking and even in activities you'd never imagine a male would fall asleep. He appears to always have had it since about puberty but it got worse as his sleep apnea did.
Avatar n tn has anyone heard what vaccination is reportedly linked to narcolepsy? i saw a show yesterday about narcolepsy and they mentioned a vaccination was given to a 13 year old girl and 2 hours later she was experiencing cataplexly (a paralyzing catatonic state that is a symptom of narcolepsy) but they did not say which vaccination.
Avatar m tn and at the same time it should not be happening. i do have narcolepsy and the reason i add this is because i know this in itself has a lot of symptoms ie cataplexy sleep paralysis.
Avatar f tn This is the symptom of a sleep disorder called Narcolepsy. This sleep disorder is characterized by excessive day time sleepiness, sleep paralysis, cataplexy where the person has episodes of loss of muscle function while awake, hypnogogic hallucinations and automatic behavior. You will need to consult your primary care physician, who may schedule you for a polysomnogram (sleep test) to rule out sleep disorders and initiate appropriate therapy. Hope this helped and do keep us posted.
Avatar m tn the first National People of Color AIDS Activist Conference; and co-founded the Asian and Pacific Islander Caucus. In 1992, Lei served as the Founding Board Co-chair of the Asian and Pacific Islander Coalition on HIV/AIDS, the first AIDS organization to serve the API community in New York City.