Narcolepsy blog

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narcolepsy

4489852 tn?1375753951 This is not a question, but I wanted to post my blog on here for other people to read if they wanted to. I had a hard time finding a chiari blog that was kept up to date and was current, so I wanted to start one not only so that i could have record of everything, but also so that other people could read my story and see that they are not alone in this fight. This is the blog I started in April.
730180 tn?1249543941 Have finally made public the blog I started about my wifes struggle with MSK. The address is http://spongekidney.dross.org.uk Click the blog link and you will see whats there. Still very much a work in progress and will be changing direction in the future so please be gentle with me.
1853014 tn?1340038575 I think this is the blog you are talking about. It is excellent. You can see there are many, many pages of valuable information. Plus it is written very well and has some humor too. http://hep-free.
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.
208141 tn?1229873260 It is amazing how similar our symptoms are- I have almost everything you mentioned- I have 2 kids and it ALL started after the birth of my first daughter (I also had bells palsy 2 days onset after the birth) It's amazing to read this ! We should keep up with each other and update! I have a blog if you'd like to follow it www.ramblingsofarandomhousewife.blogspot.com Please keep in contact, at least you know how I feel!
Avatar m tn //totallyadd.com/category/totallyadd-blog/rick-totallyadd-blog/ . There is one other site that I know of - just gotta find it. Hope this helps.
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.
427801 tn?1203844562 She is a few years older than me and said she started noticing the same thing when she was my age (23 at the time), and shes since been diagnosed with Narcolepsy. She said the problems progressed into her falling asleep at lights. Then her falling asleep at dinner. Finally after being diagnosed, she was put on a medication to keep her alert (Cylert maybe?) and she says its helped. Well my parents are seriously concerned that I may have it as well.
729135 tn?1247495402 Regarding genetic testing for narcolepsy, positive test results indicate a susceptibility to narcolepsy but do not definatively diagnose narcolepsy. Positive genetic tests results are used to support a clinical diagnosis of narcolepsy. We recommend that you speak with your doctor regarding your symptoms and test results as well as to discuss the most appropriate course of treatment for your specific situation. We wish you the best.
Avatar f tn I was reading up about it and this lead me to read about Narcolepsy as Cataplexy is a unique symptom to this condition. I read about the symptoms and I am now afraid that I may be suffering from it. I have very vivid and sometimes lucid dreams and I wake up almost every hour of the night for short spans of time. Sometimes I cannot tell my dreams from reality and I often hear noises and see things during the night that aren't really there.
Avatar f tn Narcolepsy, how to find the severity of this sleep disorder? I am helping my friend with his disability claim. He has PTSD also and is not able to discuss the Narolepsy with doctors or me or anyone. How can I show the severity of his Narcolepsy. He goes out of way to look normal everytime he has an evaluation for mental stability. He has sleep Apnea #12 CPAP nightly. He is not able to tolerate the Narcolepsy medication. throat clossed, tongue swale, stomach blew up, stayed in toilet.
Avatar n tn t have sleep apnea but it was narcolepsy. He never told me what I needed to do about it. Do you also know if people with this disorder have periods of sleep walking. I have walked in my sleep from time to time since I was a child but it seems to have suddenly multiplied in the last few years. I am now 56 and have had some very life changing events in my life during these last 3-4 years. I am wondering if these traumatic events could have caused the sleep walking to increase. I stay exhausted.
Avatar f tn At 16, my daughter finally had a sleep study. She met the criteria for narcolepsy. What I find puzzling is that her sleep problems were already there in infancy. She did not sleep excessively at first -- just very erratically, in short pieces of time. Even at 6 months old I could put her on her back and she would suddenly be asleep for 5-15 minutes (in the middle of an activity). 1- Can a BABY have narcolepsy?