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January 5th, 2013 #NChat

01/06/13

  08:28:00 am, by The Dreamer   , 9134 words  
Categories: mSpew

January 5th, 2013 #NChat

  • TheRealMikeHunt Q4. What resources do you have trouble locating? Research? Treatment? Other #PWN in your area? #Nchat -4:38 PM Jan 5th, 2013
  • LawrenceChen Yeah...I don't know how many N patients my doc has....the only person with N/C he mentions in our sessions is his wife. #nchat -4:38 PM Jan 5th, 2013
  • belstar06 @MiaRaven family and close friends still give me hard time, they just brush it off and say go to bed earlier #nchat -4:39 PM Jan 5th, 2013
  • stridesagainstN @wehaveourhopes I agree. I think that's where the FB groups and NarNet boards come in handy. #Nchat -4:39 PM Jan 5th, 2013
  • MaireadLawless @convergecollide You should! You could pass on an email address for other PWN to make contact if they wish? #nchat -4:39 PM Jan 5th, 2013
  • TheRealMikeHunt @stridesagainstN Agree. I know where to start, we started right here and we wont stop till everybody knows about it. Who's with me. #Nchat -4:39 PM Jan 5th, 2013
  • mavericksmeow @mitdoc my doc told me not to use Xyrem. Mind you I don't have cat. #Nchat -4:39 PM Jan 5th, 2013
  • LawrenceChen Though the copay assistance programs can help....on Xyrem costs. #nchat -4:39 PM Jan 5th, 2013
  • TheRealMikeHunt @belstar06 @MiaRaven Those people are the worst #Nchat -4:40 PM Jan 5th, 2013
  • stridesagainstN @TheRealMikeHunt FIST PUMP! #Nchat -4:40 PM Jan 5th, 2013
  • mitdoc A4. A big problem seems to be finding doctors who are up on the current treatments and are willing to prescribe. #Nchat -4:40 PM Jan 5th, 2013
  • LawrenceChen I knew my first refill of the year was going to be more expensive than the rest, because of my big $2500 deductible. #nchat -4:40 PM Jan 5th, 2013
  • convergecollide @MaireadLawless that's a REALLY good idea! Maybe I'll have some simple business cards printed up... #nchat -4:40 PM Jan 5th, 2013
  • TheRealMikeHunt @stridesagainstN @wehaveourhopes Is it time to start a FB group? #Nchat -4:41 PM Jan 5th, 2013
  • MiaRaven @convergecollide Girl, I'd tattoo it on my forehead if I thought it'd do any good. "I'm not lazy, I have narcolepsy!" #nchat -4:41 PM Jan 5th, 2013
  • stridesagainstN RT @TheRealMikeHunt: Q4. What resources do you have trouble locating? Research? Treatment? Other #PWN in your area? #Nchat -4:41 PM Jan 5th, 2013
  • Sarah_hosey @mitdoc yeah I know the 'finding the right dose' game pretty well 😔 #nchat -4:41 PM Jan 5th, 2013
  • TheRealMikeHunt RT @convergecollide: @MaireadLawless that's a REALLY good idea! Maybe I'll have some simple business cards printed up... #nchat -4:41 PM Jan 5th, 2013
  • jenniewakefield I used to get mocked for sleeping and being tired all the time, even my parents called me lazy and bone-idle for years #Nchat -4:41 PM Jan 5th, 2013
  • convergecollide @mavericksmeow @mitdoc I don't have cataplexy either but have had some success with Xyrem esp. with waking up in the a.m. #nchat -4:41 PM Jan 5th, 2013
  • mavericksmeow I got my doc 4 hrs away to prescribe me meds & I still have no coverage #Nchat -4:41 PM Jan 5th, 2013
  • TheRealMikeHunt @LawrenceChen Yowza! #Nchat -4:42 PM Jan 5th, 2013
  • LawrenceChen And, I was ready to pay it all, except I hadn't switched from my HSA debit card expiring 12/12 when they called on the 2nd. #nchat -4:42 PM Jan 5th, 2013
  • Sarah_hosey RT “@MiaRaven: @convergecollide Girl, I'd tattoo it on my forehead if I thought it'd do any good. "Im not lazy, I have narcolepsy!" #nchat” -4:42 PM Jan 5th, 2013
  • stridesagainstN @TheRealMikeHunt @wehaveourhope There are already so many...that's the issue. Everyone is spread out, doing their own thing. #Nchat -4:42 PM Jan 5th, 2013
  • TheRealMikeHunt RT @stridesagainstN: @TheRealMikeHunt FIST PUMP! #Nchat -4:42 PM Jan 5th, 2013
  • MiaRaven @belstar06 I get the same thing, one fam member says to this day that I'm "faking it". *shrugs* Screw them, I say. @therealmikehunt #nchat -4:42 PM Jan 5th, 2013
  • stridesagainstN RT @mitdoc: A4. A big problem seems to be finding doctors who are up on the current treatments and are willing to prescribe. #Nchat -4:42 PM Jan 5th, 2013
  • jenniewakefield @TheRealMikeHunt please start a fb group, my friends in the uk have no idea about narcolepsy #Nchat -4:43 PM Jan 5th, 2013
  • wehaveourhopes @TheRealMikeHunt @stridesagainstN There are a few groups already, but I'd prefer @catthoma's and your new site to be honest. #nchat -4:43 PM Jan 5th, 2013
  • MaireadLawless @convergecollide #nchat if you have a willing medic it can work. You might also want to set up a special email address for it tho! -4:43 PM Jan 5th, 2013
  • TheRealMikeHunt I know we're having fun and I love how everybody talking to one another but don't forget about Q4. #Nchat -4:43 PM Jan 5th, 2013
  • LawrenceChen But, they said I qualify for a program....that makes it $35 a month. So, I put that on regular card, save my HSA for the future. #nchat -4:43 PM Jan 5th, 2013
  • TheRealMikeHunt @wehaveourhopes @stridesagainstN @catthoma Thats damn good to hear, thx #Nchat -4:43 PM Jan 5th, 2013
  • Sarah_hosey @MiaRaven I have an aunt who thinks that's it's all in my head, and that I could stay awake if I really wanted to! Ugh #nchat -4:43 PM Jan 5th, 2013
  • stridesagainstN A4. I've noticed there is a lack of standardization in testing and diagnostic criteria. Some will say no meds, others don't. #Nchat -4:43 PM Jan 5th, 2013
  • jenniewakefield @mitdoc I get free prescriptions an I have loads of modafinil, shame I'd probs get in trouble with the law if I posted some out lol #Nchat -4:44 PM Jan 5th, 2013
  • stinacristina @convergecollide @mavericksmeow @mitdoc How does Xyrem work? I take provigil and I don't like it. I just want I be able to wake up. #Nchat -4:44 PM Jan 5th, 2013
  • lauramariee19 A4. Other local #PWN to meet with, for sure. #nchat -4:44 PM Jan 5th, 2013
  • kevin0gonzales RT @stridesagainstN: Did you see my post about @meggbphillips benefit concert for Narcolepsy Network? http://t.co/fe0W2tZB #Nchat -4:44 PM Jan 5th, 2013
  • LawrenceChen A4: other PWN's in the area.... its the big thing I miss when I'm back from a conference.... #nchat -4:44 PM Jan 5th, 2013
  • MiaRaven @sarah_hosey *nods* My little sister is the one that thinks I'm 'faking it'. Yeah, I can really fake HLA DNA tests. I'm that good! #nchat -4:44 PM Jan 5th, 2013
  • convergecollide A4: I wish I had some easily readable resources to pass on to people I know that focus more heavily on narcolepsy than cataplexy #nchat -4:45 PM Jan 5th, 2013
  • jenniewakefield @LawrenceChen I get free prescriptions & have loads of modafinil shame I would probs get in trouble with the law if I posted out lol #Nchat -4:45 PM Jan 5th, 2013
  • meggbphillips A4: All of the above. But mainly medication that works & is not too expensive. I keep building a tolerance & increasing dose & so on. #nchat -4:45 PM Jan 5th, 2013
  • mavericksmeow A4: most doctors will tell me they don't know enough to prescribe me meds. My specialist works 2x/week only :( #Nchat -4:45 PM Jan 5th, 2013
  • belstar06 @Sarah_hosey @MiaRaven so glad to find its not just my family #nchat -4:45 PM Jan 5th, 2013
  • stridesagainstN A4. I met a #PWN this year - best experience ever. I'd like to find others near me. #Nchat -4:45 PM Jan 5th, 2013
  • MiaRaven #nchat A4 - Finding a good sleep doc is hard, I used to travel 3+ hours to see the doc that DX'ed me after going thru 4 docs that couldn't. -4:46 PM Jan 5th, 2013
  • stinacristina @convergecollide That would be beneficial. Do you find it hard to explain because people often think narcolepsy IS cataplexy? #Nchat -4:46 PM Jan 5th, 2013
  • mavericksmeow @meggbphillips me too! #Nchat -4:46 PM Jan 5th, 2013
  • mitdoc @stinacristina Xyrem seems to allow you to go into non-REM sleep at night, which allows you to actually rest. #Nchat -4:46 PM Jan 5th, 2013
  • TheRealMikeHunt @stridesagainstN very true but how do we get them all together? #Nchat -4:46 PM Jan 5th, 2013
  • convergecollide A4: It's hard when people try to learn abt it but much of the info is about cataplexy & then I have to explain that mine is different #nchat -4:46 PM Jan 5th, 2013
  • Sarah_hosey I found out I have an uncle with narcolepsy. Anybody else have family members with narcolepsy? #nchat -4:46 PM Jan 5th, 2013
  • TheRealMikeHunt @stridesagainstN me too #Nchat -4:47 PM Jan 5th, 2013
  • meggbphillips @LawrenceChen We have a $7,000 deductible, so I feel your pain. #tooexpensive #nchat -4:47 PM Jan 5th, 2013
  • convergecollide @stinacristina Yes. It's frustrating. #nchat -4:47 PM Jan 5th, 2013
  • mavericksmeow @Sarah_hosey only one :( #Nchat -4:47 PM Jan 5th, 2013
  • MaireadLawless @Sarah_hosey #nchat I understand that can be an issue in US. Meds for depression are used too - prob easier to get prescribed and paid for -4:47 PM Jan 5th, 2013
  • LawrenceChen @stridesagainstN yeah...first few docs were only interested in objective tests to diagnose.... not enough that PSG says I might... #nchat -4:47 PM Jan 5th, 2013
  • TheRealMikeHunt @convergecollide Then we should make them, agree? #Nchat -4:47 PM Jan 5th, 2013
  • stridesagainstN @TheRealMikeHunt Well, I guess you and @catthoma make such an awesome site so no one has to go anywhere else. :) #Nchat -4:47 PM Jan 5th, 2013
  • stinacristina @mitdoc My doctor was thinking about prescribing me that, but I turned it down. I need to to back. I am nervous about being medicated.#nchat -4:48 PM Jan 5th, 2013
  • Sarah_hosey RT @belstar06: @Sarah_hosey @MiaRaven so glad to find its not just my family #nchat -4:48 PM Jan 5th, 2013
  • TheRealMikeHunt @Sarah_hosey My dad, found out after he died. #Nchat -4:48 PM Jan 5th, 2013
  • stridesagainstN @convergecollide And those of those who do have #cataplexy, everyone thinks we're having sleep attacks but we're not. Sigh... #Nchat -4:48 PM Jan 5th, 2013
  • mavericksmeow @stridesagainstN what's the site? #Nchat -4:48 PM Jan 5th, 2013
  • TheRealMikeHunt @stridesagainstN @catthoma I really really hope so #Nchat -4:48 PM Jan 5th, 2013
  • jenniewakefield @mitdoc @stinacristina #Nchat I need xyrem, sick of REM sleep, they give me modafinil an that just keeps me awake thru the day -4:49 PM Jan 5th, 2013
  • LawrenceChen @stridesagainstN ... but clinical correlation needed. Guess most docs don't have time to listen to their patients, etc. #nchat -4:49 PM Jan 5th, 2013
  • MaireadLawless @convergecollide #nchat Do you know about Stanford & Prof Emmanuel Mignot? His research asst is very helpful. You could email her for some? -4:49 PM Jan 5th, 2013
  • mavericksmeow @jenniewakefield Modafinil barely keeps me awake. #Nchat -4:50 PM Jan 5th, 2013
  • stridesagainstN @stinacristina @jenniewakefield I am on Xyrem. I sleep much better at night and it helps with cataplexy. Still struggle with EDS. #Nchat -4:50 PM Jan 5th, 2013
  • jenniewakefield @stridesagainstN @convergecollide #cataplexy #Nchat people that don't know about mine think I'm just having a spasm -4:50 PM Jan 5th, 2013
  • TheRealMikeHunt A4.Still haven't found anybody in my area 2 talk 2, and I still have trouble finding treatment, but that is all gonna change in 2013 #Nchat -4:50 PM Jan 5th, 2013
  • MiaRaven #nchat A4 - I find it odd that most of yall can't find info about N w/o C, C is hardest to explain to others & most still don't 'get it'. -4:50 PM Jan 5th, 2013
  • convergecollide @stridesagainstN It's really impressive how almost everyone knows nothing, or is misinformed. #nchat -4:50 PM Jan 5th, 2013
  • mitdoc @LawrenceChen Lack of time is part of it, but lack of experience is a big part as well. #Nchat -4:50 PM Jan 5th, 2013
  • LawrenceChen First sleep doc I saw, told me that he's ignoring me and until I stop talking he's not going to do anything during the appointment. #nchat -4:50 PM Jan 5th, 2013
  • belstar06 @mavericksmeow @Sarah_hosey think my mum may have it but she doesnt think it exists unless you fully collapse in a heap, #nchat -4:50 PM Jan 5th, 2013
  • Sarah_hosey @stridesagainstN we should try to organize something! I've never met anyone with narcolepsy, I think it'd be a great experience #nchat -4:51 PM Jan 5th, 2013
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