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Narcoleptics... where are you?
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Started this discussion. Last reply by Michele Blazina Nov 12.
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HI My name is Michele and I was diagnosed with narcolepsy about 6 months ago and really am struggling with it. I as well need extra support I don't really know where to go or who to talk to. Its like some people don't get the whole feeling exhaust...
My son has this has had it for years school is threating to turn him into a trunacy officer. Wont believe me even though they have had a note form docotr saying he has narcolopsy they say so what. I say that means he cant stay awake cant wake him ...
Ryan-
I was diagnosed with Idiopathic Hypersomnia when I was 22 (26 now). Its very similiar to narcolepsy with just a few technical differences when it comes to sleep cycles, rem, etc (in fact normally I just tell people I have narcolepsy because...
I was diagnosed about 3 years ago and it has been the best thing ever. I work in the sleep field and for years thought I had narcolepsy. I have had cataplexy since childhood and EDS. I napped 2 hours everyday of my life before treatment. Now I nev...
I AM Struggling now as my wmedco took me off nuvigil after doing well on provigil for years, 3 but had had the symtoms many years prior, apparently my employer changed the rules and every doc we are asked for we submit and now my doc and I wonder ...
I was diagnosed about two years ago. I was suffering from strange episodes when I laughed and my doctor sent me first of all to an epilepsy clinic. It was there that the doctor mentioned cataplexy which I had never heard of, after that I was sent ...
Can anyone help me find a good Dr. and support group in St. Louis MO. I was diagnosed with narcolepsy 6 months ago at the age of 44... Finally!!! My symptoms started at about age 11. I do like my Dr. but I would still like to learn more. Also, any...
Do you also have trouble falling asleep at night? I find that even though I take my nuvigil every morning that it fails to keep me up, but when I lay down to go to sleep, nothing happens. I have sleep apnea too, so I use the mask, which is suppose...
I've gotten tremendous support from the Narcolepsy Network and http://www.talkaboutsleep.com (I'm DozyDayDreamer, but typically just lurk). There are tons of online resources available, and even a pretty awesome book that helped me quite a bit. NA...
Hey ryan ! im 26 and I was diagnosed with narcolepsy 2 yrs. ago...although i always had problems waking up in the morning...my sisters hated me b/c my alarm would go off for an hour and id still be fast asleep! Problems really started affecting me...
My life would have been TREMENDOUSLY easier if someone would have picked up on my narcolepsy earlier. Everybody, parents, teachers, professors; they all thought I was just lazy. If I suddenly lost controll of the muscles in my hand during a lesson...
Hey Ryan,
My name is Kevin, I am 31 and was diagnosed with Narcolepsy 5 years ago. My experience is more representative of narcolpsy without cataplexity (but I do have a head drop or knee buckle know and then)
Managing the disease is different f...
I'm interested in talking with other people who have been diagnosed with narcolepsy because I have been recently diagnosed (thankfully I can classify my sleeping for days on end now) and would really like any advice, support, or resources to help ...
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- At 10:44pm on August 24, 2009,
Kelly P said…
- Oh, i just read your about me... idk how far pitt. is in relation to philly but i just found a sleep disorder center in philly at one of their hospitals... checked out their website and seems like theyre pretty damn good. they had treatments on their site that they do i havent even heard of yet. i was goin to cooper hospital in voorhees but their sleep center isnt that good at all. i kinda hate my dr. lol. if u want i can give u more details if your interested and not too far away. my appt. is sept 17th so i could also let u know how they are..
Profile Information
- How many hours of sleep do you get at night?
- 8 hours
- About Me:
- I was recently diagnosed with narcolepsy and I am now in the process of figuring out how to effectively manage it. I'm still looking around for a sleep specialist in Pittsburgh, PA since I've come home from college (in Erie, PA). Also looking for any advice, support, or resources that anyone might offer to help. Especially interested in talking with someone who has the same disorder, in particular someone also in their mid-twenties, and would be willing to answer some questions and act as a comparison for myself (since I know no one else who has narcolepsy right now). Just found out about Ning too, so hoping to try this out : ). Thanks!
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thats so good information i will have it on mind i will sleep better cause i suffer of stree i will sleep more for reduce my stress problem because i also suffer of acute asthma so i want to now that if i sleep more this will help me to reduce my ...
i always knew that i good 8 hours of night sleep will help to to feel better and to look better that why sleep 8 hours is so important good sleeping habits.
what does xyrem do? does it make you go to sleep and then help you wake up
Dear friends,
Hello! i am a new comer to the forum and been diagnosised as Sleep apnea fro some years. Since there was no mark problem that i had not doing anything for this till sleeping is worsting now, i decided to purchased a CPAP for improvin...
it definitely makes sense...and I can completely relate to just about everything you wrote. We definiitely have a lot of common, and I'll write more a little later on, since, although I know I shouldn't...I woke up today, checked for messages on t...
Thanks for the response, Marcia. Funny about your brother though because my sleepless brother also lives in France (the other one as well incidentally), since I am a French expatriate living in the USA. We are all in our mid-late fifties. What abo...
My brother as far as I know, sleeps well...though since he lives in France and I haven't seen him in 4 years or so, though I doubt anything has changed. Oh, and he (when I was around him more often) had what to me, seemed to be the best sleep sche...
Hello,
I recognize myself in just about every story on this board. One thing that I am now looking at more closely and that you have done is finding a proper shrink--more about this later.
So, am brand new on this site--found it as I was about t...
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