« September 7th, 2013 #NChatMarch 2nd, 2013 #NChat »

April 6th, 2013 #NChat

04/06/13

  08:43:00 pm, by The Dreamer   , 8147 words  
Categories: mSpew

April 6th, 2013 #NChat

  • TheRealMikeHunt @stridesagainstN @catthoma is it time to open it up? #Nchat -4:43 PM Apr 6th, 2013
  • stridesagainstN Those are the formal questions we had for this chat. Does anyone have anything they'd like to ask? #nchat -4:43 PM Apr 6th, 2013
  • mitdoc The current issue of the Narcolepsy Network newsletter has a dietary plan for #PWN. #Nchat -4:43 PM Apr 6th, 2013
  • catthoma @TheRealMikeHunt @stridesagainstN I'll never cut carbs. Or cheese. I will cut-the-cheese. Mostly in public. #nchat -4:43 PM Apr 6th, 2013
  • catthoma @TheRealMikeHunt @stridesagainstN I think so! #nchat -4:44 PM Apr 6th, 2013
  • TheRealMikeHunt RT @catthoma: @TheRealMikeHunt @stridesagainstN I'll never cut carbs. Or cheese. I will cut-the-cheese. Mostly in public. #nchat -4:44 PM Apr 6th, 2013
  • RedBradshaw Thanks! @mitdoc: The current issue of the Narcolepsy Network newsletter has a dietary plan for #PWN. #nchat -4:44 PM Apr 6th, 2013
  • TheRealMikeHunt @essoblu sure does #Nchat -4:44 PM Apr 6th, 2013
  • stridesagainstN @mitdoc Has that gone out? I haven't received a newsletter yet. #nchat -4:44 PM Apr 6th, 2013
  • TheRealMikeHunt RT @mitdoc: The current issue of the Narcolepsy Network newsletter has a dietary plan for #PWN. #Nchat -4:44 PM Apr 6th, 2013
  • TheRealMikeHunt RT @stridesagainstN: Those are the formal questions we had for this chat. Does anyone have anything they'd like to ask? #nchat -4:44 PM Apr 6th, 2013
  • catthoma RT @stridesagainstN: Those are the formal questions we had for this chat. Does anyone have anything they'd like to ask? #nchat -4:45 PM Apr 6th, 2013
  • mitdoc @stridesagainstN Yes, it went out this past week. #Nchat -4:45 PM Apr 6th, 2013
  • catthoma Alright tweeple- the last 15 minutes is open conversation this time. What do YOU want to chat about? #nchat -4:45 PM Apr 6th, 2013
  • LawrenceChen Hmmm, wonder where I put my newsletter....been bad with leaving mail in odd places recently.... #nchat -4:45 PM Apr 6th, 2013
  • TheRealMikeHunt I have one. Besides @LawrenceChen how many other guys are out there in #Nchat land. Soooo many ladies -4:46 PM Apr 6th, 2013
  • convergecollide @mitdoc is it on their website as well, do you know? #nchat -4:46 PM Apr 6th, 2013
  • sarahkbeau I am out of here, I need to make some food and head out the door! Happy napping fellow narcoleptics. &#59;) #NChat -4:46 PM Apr 6th, 2013
  • MaireadLawless @mitdoc how do I access it? #nchat -4:46 PM Apr 6th, 2013
  • essoblu #nchat I'm carb free since feb - no -4:46 PM Apr 6th, 2013
  • TheRealMikeHunt RT @catthoma: Alright tweeple- the last 15 minutes is open conversation this time. What do YOU want to chat about? #nchat -4:46 PM Apr 6th, 2013
  • mitdoc @convergecollide Not yet, the website has up to the end of 2012. Hopefully will post in a few weeks. #Nchat -4:47 PM Apr 6th, 2013
  • TheRealMikeHunt @sarahkbeau thx for coming! #Nchat -4:47 PM Apr 6th, 2013
  • catthoma @sarahkbeau Bye honey! :) #nchat -4:47 PM Apr 6th, 2013
  • LawrenceChen supposed to be in the member area...but I can't seem to find the login #nchat -4:47 PM Apr 6th, 2013
  • mitdoc @MaireadLawless You have to be a member of the Narcolepsy Network (http://t.co/EJPHOJE8q5). #Nchat -4:47 PM Apr 6th, 2013
  • THEAdnAmA #NCHAT I had thought of a question a couple of weeks ago but never wrote it down... so now I can't remember. :( -4:48 PM Apr 6th, 2013
  • jamesgblackwell @TheRealMikeHunt I'm a bloke... or I was last time I checked anyway! :-) #nchat -4:48 PM Apr 6th, 2013
  • MaireadLawless @mitdoc Ok thanks. #nchat -4:48 PM Apr 6th, 2013
  • TheRealMikeHunt Come on people, hit us up with your questions! #Nchat -4:48 PM Apr 6th, 2013
  • LawrenceChen keep getting pages saying I need to be a member, but there's no where to login as a member. #nchat -4:48 PM Apr 6th, 2013
  • catthoma Here's my random question- do you think we can find funding amungst us to start developing a magic anti-#cataplexy pill? #nchat -4:49 PM Apr 6th, 2013
  • TheRealMikeHunt @THEAdnAmA #narcolepsyyousillybitch #Nchat -4:49 PM Apr 6th, 2013
  • TheRealMikeHunt Also make sure to follow all your new #Nchat friends -4:49 PM Apr 6th, 2013
  • MaireadLawless @jamesgblackwell @therealmikehunt But you don't have N James!!!! Men with N don't seem to get involved as much as the women... #nchat -4:49 PM Apr 6th, 2013
  • catthoma @THEAdnAmA damn #narcolepsy brain. #nchat -4:49 PM Apr 6th, 2013
  • TheRealMikeHunt @jamesgblackwell and that makes two. Good thing you checked. #Nchat -4:50 PM Apr 6th, 2013
  • mitdoc @LawrenceChen If you go the the NN website, there is a place to click for member sign-in. #Nchat -4:50 PM Apr 6th, 2013
  • RedBradshaw ?...NEW N support grp striking out on their own in OH..1st mtg next wk (general get-2-know-u)..anyone else belong to a real-life grp? #nchat -4:50 PM Apr 6th, 2013
  • catthoma RT @TheRealMikeHunt: Come on people, hit us up with your questions! #Nchat -4:50 PM Apr 6th, 2013
  • catthoma RT @TheRealMikeHunt: Also make sure to follow all your new #Nchat friends -4:50 PM Apr 6th, 2013
  • MaireadLawless @catthoma Have you got a potion in development? #nchat -4:50 PM Apr 6th, 2013
  • essoblu #nchat been carb free since Feb no relief on #cataplexy or #EDS apparently need to be gluten free 2 -4:50 PM Apr 6th, 2013
  • TheRealMikeHunt @MaireadLawless @jamesgblackwell what are you trying to say, we're ladies now? #Nchat -4:51 PM Apr 6th, 2013
  • THEAdnAmA @TheRealMikeHunt #narcolepsyyousillybitch < still my favorite hashtag! #NCHAT -4:51 PM Apr 6th, 2013
  • stridesagainstN @catthoma Well, aren't SSRIs supposed to be magic #cataplexy pills? That and Xyrem. #nchat -4:51 PM Apr 6th, 2013
  • RedBradshaw Not that this isn't a real-life group....hahaha...didn't come out right (I blame brain fog and a glass of wine) #nchat -4:51 PM Apr 6th, 2013
  • mitdoc @RedBradshaw They are starting a support group here in Roanoke in August. #Nchat -4:51 PM Apr 6th, 2013
  • LawrenceChen it keeps taking me to page saying this section is for members only, but nowhere to login as a member. #nchat -4:51 PM Apr 6th, 2013
  • jamesgblackwell @MaireadLawless @TheRealMikeHunt Correct... I do not have N, just #nchat! #nchat -4:51 PM Apr 6th, 2013
  • TheRealMikeHunt @catthoma totally. Whenever the drug companies think they can make a shit ton of money off of it. #Nchat -4:51 PM Apr 6th, 2013
  • stridesagainstN @essoblu If you're carb free, what are you still eating with gluten in it? Sounds like you're not too far off. #nchat -4:52 PM Apr 6th, 2013
  • catthoma @RedBradshaw nope. can't find people out here. My doc is helping me set up an event with the local Children's Hospital though. #nchat -4:52 PM Apr 6th, 2013
  • smamela As I chat with more people about their narcolepsy symptoms, I'm more and more convinced that's what I have. Only 1 SOREMP in MSLT. #NChat  -4:52 PM Apr 6th, 2013
  • THEAdnAmA @RedBradshaw #NCHAT I have only met two other narcos. I don't know of a group in my area. -4:52 PM Apr 6th, 2013
  • convergecollide Alright #sleepypeople, I hafta get going....great to chat with you all, as always! #Nchat -4:52 PM Apr 6th, 2013
  • smamela So the Dr isn't convinced. #NChat  -4:52 PM Apr 6th, 2013
  • TheRealMikeHunt @THEAdnAmA your welcome, I made that up while chatting with these guys before we started #Nchat -4:52 PM Apr 6th, 2013
  • catthoma @MaireadLawless haha if only! Right now- wine seems to be a good start to the potion... &#58;&#41; #nchat -4:52 PM Apr 6th, 2013
  • stridesagainstN @RedBradshaw I started a group here in KC. It's so awesome to talk to people face-to-face who understand. #nchat -4:52 PM Apr 6th, 2013
  • TheRealMikeHunt @essoblu good luck with that. #Nchat -4:52 PM Apr 6th, 2013
  • RedBradshaw Just don't know what to expect..these are people who've been in Sleep Disorder Group but are tired of talking about apnea is my guess #nchat -4:53 PM Apr 6th, 2013
  • MaireadLawless @TheRealMikeHunt @jamesgblackwell Is it because the chatty aspect appeals more to women and men prefer to talk about politics/sport #nchat -4:53 PM Apr 6th, 2013
  • MaireadLawless @TheRealMikeHunt @jamesgblackwell am half joking!! #nchat -4:53 PM Apr 6th, 2013
  • TheRealMikeHunt @RedBradshaw no love in AZ yet! #Nchat -4:53 PM Apr 6th, 2013
  • jamesgblackwell @TheRealMikeHunt Dare I say it... I just think the ladies are better at this chatting/twittering thing than... no I'd better not! #nchat -4:53 PM Apr 6th, 2013
  • stridesagainstN @smamela The fact that you have 1 SOREMP tells me you should have another MSLT at some point. Were you on any meds? #nchat -4:53 PM Apr 6th, 2013
  • TheRealMikeHunt @convergecollide thx for coming! #Nchat -4:54 PM Apr 6th, 2013
  • catthoma @stridesagainstN wouldn't know. My doc just puts me on stimulants that make it worse. And I need a few more weeks on #xyrem first #nchat -4:54 PM Apr 6th, 2013
  • RedBradshaw @stridesagainstN YAY you! Do you have good attendance and find it helpful for face-to-face? So, in other words, worth going? #nchat -4:55 PM Apr 6th, 2013
  • TheRealMikeHunt @MaireadLawless @jamesgblackwell fair enough #Nchat -4:55 PM Apr 6th, 2013
  • stridesagainstN @catthoma If the Xyrem doesn't work or you can't tolerate it, ask about an SSRI for the #cataplexy. If he doesn't know, get a new doc #nchat -4:55 PM Apr 6th, 2013
  • catthoma @smamela hmm... sounds like you have something close. I had to do two #mslt's for a full dx. #nchat -4:55 PM Apr 6th, 2013
  • LawrenceChen I only had one MSLT, but it was reviewed 3 times.... first time, no SOREMs, not N. second time, two SOREMs.... #nchat -4:55 PM Apr 6th, 2013
  • TheRealMikeHunt @jamesgblackwell dont do it James its not worth man, blame out man #Nchat -4:55 PM Apr 6th, 2013
  • stridesagainstN @RedBradshaw We're a small but mighty group. Had our first meeting a few weeks ago. Was so awesome even with only 3 people. #nchat -4:56 PM Apr 6th, 2013
  • smamela @stridesagainstN no meds. went in because it turns out fainting episodes aren't fainting. trying to decide epilepsy or narcolepsy.#nchat -4:56 PM Apr 6th, 2013
  • MaireadLawless @jamesgblackwell @therealmikehunt Watch it!!! But yeah. The chatty bit doesn't appeal to all men. #nchat -4:56 PM Apr 6th, 2013
  • stridesagainstN @smamela Are the "fainting" episodes occuring with emotion? Are you aware of your surroundings during them? #nchat -4:57 PM Apr 6th, 2013
  • TheRealMikeHunt @MaireadLawless @jamesgblackwell I never shut up #Nchat -4:57 PM Apr 6th, 2013
  • LawrenceChen ...but not N, because my hypocretin level in that area that they don't know what to do with us. #nchat -4:57 PM Apr 6th, 2013
  • TheRealMikeHunt @smamela @stridesagainstN there is a might fine line there #Nchat -4:57 PM Apr 6th, 2013
  • mitdoc @smamela My daughter was diagnosed first with epilepsy, but turned out to be N/C, so don't give up! #Nchat -4:57 PM Apr 6th, 2013
  • LawrenceChen Even after the #cataplexy diagnosis, they wouldn't make a #narcolepsy diagnosis. #nchat -4:57 PM Apr 6th, 2013
  • catthoma @stridesagainstN well I've only been back on for 2 1/2 weeks. Doc said to check after 4 weeks. He has mentioned trying an SSRI. #nchat -4:57 PM Apr 6th, 2013
  • MaireadLawless @TheRealMikeHunt @jamesgblackwell That's a good thing! #nchat -4:58 PM Apr 6th, 2013
  • LawrenceChen Especially since Xyrem is only approved for #narcolepsy with #cataplexy and narcolepsy without cataplexy. No N, no Xyrem. #nchat -4:58 PM Apr 6th, 2013
  • lauramariee19 Coming in at the end! Love you guys... (And I started #Xyrem since the last #nchat, so far so good!) -4:58 PM Apr 6th, 2013
  • TheRealMikeHunt RT @mitdoc: @smamela My daughter was diagnosed first with epilepsy, but turned out to be N/C, so don't give up! #Nchat -4:58 PM Apr 6th, 2013
  • smamela @catthoma ugh, really? I do NOT want to do that again. I have a hard time with hospitals. was shocked I slept at all. #nchat -4:58 PM Apr 6th, 2013
  • mitdoc @LawrenceChen That's strange, as cataplexy only occurs in conjunction with narcolepsy. #Nchat -4:58 PM Apr 6th, 2013
  • stridesagainstN @catthoma Took me about 6 weeks before #cataplexy was improved. Had a huge sleep debt to pay off I guess. &#58;&#41; #nchat -4:58 PM Apr 6th, 2013
  • LawrenceChen And, my doc didn't want to become approved to prescribe Esctacy. #nchat -4:59 PM Apr 6th, 2013
  • smamela @convergecollide yeah, my sleep latency was 8mins. not sure what that means. #Nchat  -4:59 PM Apr 6th, 2013
  • MaireadLawless @LawrenceChen In Ireland they give it to PWN to deal with C. My son has subtle c but it def helps with the EDS. #nchat -4:59 PM Apr 6th, 2013
  • TheRealMikeHunt A special thx to @THEAdnAmA @MaireadLawless @mitdoc for helping out with the retweets today, just to name a few. #Nchat -4:59 PM Apr 6th, 2013
  • stridesagainstN @lauramariee19 Hi, Laura! Glad to hear you're doing well with the Xyrem so far! There's a new Xyrem Support Group on FB if needed #nchat -4:59 PM Apr 6th, 2013
  • catthoma @smamela @stridesagainstN from my experience? more likely #cataplexy. No test for that & little known about it #nchat -4:59 PM Apr 6th, 2013
  • LawrenceChen Finally saw a 3rd doctor...and said, well, it looks like a duck and quacks like a duck, so you have narocolepsy. #nchat -5:00 PM Apr 6th, 2013
  • TheRealMikeHunt @lauramariee19 good luck Laura thx for stopping by #Nchat -5:00 PM Apr 6th, 2013
  • smamela @stridesagainstN yes with emotion, and sort of. some yes, some no. #nchat -5:01 PM Apr 6th, 2013
  • RedBradshaw OH...Heres a ?!!!! I don't have cataplexy (at least the sx that I've read about to the extreme)...is it possible present that later? #nchat -5:01 PM Apr 6th, 2013
  • stridesagainstN Alright, y'all. I'm off to go enjoy this beautiful weather with my family. Thanks for a great chat! #nchat -5:01 PM Apr 6th, 2013
  • LawrenceChen and turns out he's the only doctor in Manhattan treating narcolepsy patients. #nchat -5:01 PM Apr 6th, 2013
  • catthoma @smamela won't lie- it sucked. But after I did it- no doubt of my dx ever again. So it's worth it. #nchat -5:01 PM Apr 6th, 2013
  • TheRealMikeHunt @smamela @catthoma I sleep like a very angry baby at those things #Nchat -5:01 PM Apr 6th, 2013
  • MaireadLawless @mitdoc @lawrencechen Very odd. Once someone has C they have to have N unless they are suspecting Epilepsy... #nchat -5:01 PM Apr 6th, 2013
  • MaireadLawless @LawrenceChen Ecstasy?? #nchat -5:02 PM Apr 6th, 2013
  • LawrenceChen Though I think he's still learning sleep medicine under a doctor in Topeka. #nchat -5:02 PM Apr 6th, 2013
  • smamela @TheRealMikeHunt @stridesagainstN yeah, sleep doc turned me over to neuro. not sure what'll happen if it's not epilepsy. #Nchat -5:02 PM Apr 6th, 2013
  • TheRealMikeHunt @RedBradshaw I hope not #Nchat -5:02 PM Apr 6th, 2013
  • MaireadLawless RT @TheRealMikeHunt: A special thx to @THEAdnAmA @MaireadLawless @mitdoc for helping out with the retweets today, just to name a few. #Nchat -5:02 PM Apr 6th, 2013
  • mitdoc @RedBradshaw Yes, it is possible to develop cataplexy later. #Nchat -5:02 PM Apr 6th, 2013
  • catthoma @smamela @convergecollide shorter it is- more likely it's narcolepsy. Mine ranges from 2-6minutes. #nchat -5:02 PM Apr 6th, 2013
  • TheRealMikeHunt @stridesagainstN no thank you heather #Nchat -5:02 PM Apr 6th, 2013
  • smamela @mitdoc Ack, really? they're looking at both right now, and I'm so confused. #Nchat -5:02 PM Apr 6th, 2013
  • NatalieBlackwel @RedBradshaw how long have you had N do you think? My son's 1st cataplexy came 2 1/2 yrs after N #nchat -5:02 PM Apr 6th, 2013
  • MaireadLawless @LawrenceChen Well done that Doc! #nchat -5:03 PM Apr 6th, 2013
  • TheRealMikeHunt @smamela @stridesagainstN keep in mind, nero are hard people to deal with. #Nchat -5:03 PM Apr 6th, 2013
  • catthoma @stridesagainstN @lauramariee19 really? I need to find this! #nchat -5:03 PM Apr 6th, 2013
  • catthoma @RedBradshaw yep. Seems everyone shows different symptoms. I didn't think I had it- sure enough? I have since being a kid. #nchat -5:04 PM Apr 6th, 2013
  • smamela @catthoma @stridesagainstN that was my thought, and epilepsy doesn't explain the exhaustion with plenty of sleep. #nchat -5:04 PM Apr 6th, 2013
  • mitdoc @TheRealMikeHunt Neurologists do the best job of diagnosing narcolepsy, so that is a good choice of doctor. #Nchat -5:04 PM Apr 6th, 2013
  • MaireadLawless @RedBradshaw Symptoms can develop gradually. My son has subtle. His legs feel like jelly/jello when he laughs hard. eyes close too #nchat -5:04 PM Apr 6th, 2013
  • Pages: 1· 2· 3· 4· · 6·

    You must be logged in to see the comments. Log in now!

    If you have no account yet, you can register now...
    (It only takes a few seconds!)

    This will be an attempt to consolidate the little thoughts that come to me while away from my computer.

    Recent Tweets

    Search

    Categories

    Retain only results that match:

      XML Feeds

    This seal is issued to lawrencechen.net by StopTheHacker Inc.
    powered by b2evolution free blog software

    hosted by
    Green Web Hosting! This site hosted by DreamHost.

    monitored by
    Monitored by eXternalTest
    SiteUptime Web Site Monitoring Service
    website uptime