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November 3rd, 2012 #Nchat

11/03/12

  05:46:00 pm, by The Dreamer   , 6273 words  
Categories: mSpew

November 3rd, 2012 #Nchat

  • catthoma Q5. Do you think your symptoms have improved overall since diagnosis? #nchat -4:50 PM Nov 3rd, 2012
  • convergecollide A4 contd: 2 doctors, reading same sleep study results/patient history, gave 2 diff diagnoses. #Nchat -4:50 PM Nov 3rd, 2012
  • TheRealMikeHunt RT @catthoma: Ok #nchat 'ers. I am going from computer to phone to head to a party... I'll ask Q5 and try to keep up via phone. Just head's up! -4:51 PM Nov 3rd, 2012
  • catthoma @MiaRaven Haha! I love that diagnosis! #nchat -4:51 PM Nov 3rd, 2012
  • catthoma RT @MiaRaven: #nchat A4: Other DX's: "you might be having a mental breakdown" & the kicker: "Are u sure you're just not unhappy w/your marriage?" #nchat -4:51 PM Nov 3rd, 2012
  • TheRealMikeHunt RT @catthoma: Q5. Do you think your symptoms have improved overall since diagnosis? #nchat -4:51 PM Nov 3rd, 2012
  • Sarah_hosey A4: depression, hypersomnia, laziness.. #nchat -4:51 PM Nov 3rd, 2012
  • catthoma A5. Nope. If anything I think I'm hyper-sensitive to everything sleep related now. But emotionally our #narcolepsyfamily helps! #nchat -4:51 PM Nov 3rd, 2012
  • stridesagainstN @convergecollide is it tied to emotion? If so, could be C. If not, it's a sleep attack or maybe a microsleep even. #Nchat -4:52 PM Nov 3rd, 2012
  • mitdoc A5: I think my daughter's symptoms have improved, but only with meds and life-style changes. #Nchat -4:52 PM Nov 3rd, 2012
  • TheRealMikeHunt @catthoma @MiaRaven Jesus Christ that is stright up bullshit! #Nchat -4:52 PM Nov 3rd, 2012
  • LawrenceChen Sleep/Neuro doc said my Sleep Apnea/Depression was the cause for cataplexy. Even though he had said my MSLT showed #narcolepsy once. #nchat -4:52 PM Nov 3rd, 2012
  • convergecollide @Sarah_hosey I'm sure a lot of people just thought I was lazy, too. Luckily only a few said it to my face. #nchat -4:52 PM Nov 3rd, 2012
  • stridesagainstN RT @catthoma: Q5. Do you think your symptoms have improved overall since diagnosis? #nchat -4:52 PM Nov 3rd, 2012
  • LawrenceChen He changed it to Idiopathic Hypersomnia because I needed to be another 41 pg/ml lower in hypocretin to pass that test. #nchat -4:53 PM Nov 3rd, 2012
  • TheRealMikeHunt @mitdoc I had to change and lose a lot to finally get my shit right. #Nchat -4:53 PM Nov 3rd, 2012
  • MiaRaven @therealmikehunt Patriarchy at it's finest, IMO. @catthoma #nchat -4:53 PM Nov 3rd, 2012
  • stridesagainstN A5: My symptoms ebb and flow still. It depends on a lot of things like sleep schedule and #stress management. Also meds and diet. #Nchat -4:53 PM Nov 3rd, 2012
  • TheRealMikeHunt @mitdoc You can tell her it was all worth it though. #Nchat -4:53 PM Nov 3rd, 2012
  • mitdoc @TheRealMikeHunt Thanks. #Nchat -4:54 PM Nov 3rd, 2012
  • LawrenceChen A5: Yes.... hardly ever have #cataplexy now...and I'm awake for much longer during the day...and can work longer too. #nchat -4:54 PM Nov 3rd, 2012
  • sarahkbeau A5: time to particiapte in #nchat .My symptoms have improved significantly, people who don't know me fully..think i'm actually normal!! -4:55 PM Nov 3rd, 2012
  • catthoma @LawrenceChen that's awesome news! #nchat -4:55 PM Nov 3rd, 2012
  • LawrenceChen A5... though there's still plenty of room for improvement.... #nchat -4:55 PM Nov 3rd, 2012
  • lauramariee19 A5: I would say EDS is slightly worse, cataplexy is slightly better (avoidance, maybe?) and HH is heck of a lot worse #Nchat -4:55 PM Nov 3rd, 2012
  • convergecollide A5: meds have definitely helped. Not solved everything, but I'm definitely better off day-to-day with them than without! #Nchat -4:55 PM Nov 3rd, 2012
  • MiaRaven #nchat A5: I have been unmedicated for 8 yrs. Lost ins, then became uninsurable due to pre-exist, could now get it, but can't afford it. -4:55 PM Nov 3rd, 2012
  • TheRealMikeHunt @sarahkbeau Welcome Sarah #Nchat -4:56 PM Nov 3rd, 2012
  • MiaRaven #nchat A5: When on my meds, my life is vastly improved. Without, I feel like I'm constantly in a state of fog and high anxiety. -4:56 PM Nov 3rd, 2012
  • catthoma @MiaRaven that sucks... #nchat -4:57 PM Nov 3rd, 2012
  • LawrenceChen undecided if my HH is better or worse....its less scary...though its been more real. #nchat -4:57 PM Nov 3rd, 2012
  • catthoma A5. Been off meds for 2 months and won't get any til end of Jan. makes it harder... #nchat -4:57 PM Nov 3rd, 2012
  • TheRealMikeHunt A5. Nope they seem to get worse every month. I still don't have any meds or ins. Living in AZ sux. #Nchat -4:58 PM Nov 3rd, 2012
  • convergecollide @MiaRaven this makes me so angry. You should NOT be denied access to the medical care you need. GRRRRRRRR. #nchat -4:58 PM Nov 3rd, 2012
  • MiaRaven #nchat A5: Without meds I have withdrawn, cataplexy is a huge embarrassment to me. I rarely leave the house, hate large crowds, ect. -4:58 PM Nov 3rd, 2012
  • LawrenceChen Earlier today I was trying to find a report I thought I had read something in....only to discover I hadn't read it. #nchat -4:58 PM Nov 3rd, 2012
  • stridesagainstN A5: Been under a lot of stress lately and not sleeping well, so I've been a mess the last few months. Need to change some things. #Nchat -4:58 PM Nov 3rd, 2012
  • mitdoc @lauramariee19 Does it help with the HH knowing what it is due to, even though it is worse? #Nchat -4:58 PM Nov 3rd, 2012
  • MiaRaven @convergecollide Girl, I am waiting for it to kick in & hoping that Alabamastan will recognize it, so far they won't. Even on ballot. #nchat -4:59 PM Nov 3rd, 2012
  • LawrenceChen so 6 months after the report I downloaded it and read it, and what I thought it would say...it didn't. #nchat -4:59 PM Nov 3rd, 2012
  • stridesagainstN @MiaRaven People don't understand what this blasted disorder takes away from us. #Nchat -5:00 PM Nov 3rd, 2012
  • LawrenceChen That's pretty much the kind of HH that I've been having lately.... #nchat -5:00 PM Nov 3rd, 2012
  • TheRealMikeHunt We have three new member to our group make sure to welcome them @sarahkbeau @mitdoc @Sarah_hosey #Nchat -5:00 PM Nov 3rd, 2012
  • sarahkbeau @TheRealMikeHunt @mitdoc @Sarah_hosey thanks =) #nchat -5:01 PM Nov 3rd, 2012
  • catthoma RT @TheRealMikeHunt: We have three new member to our group make sure to welcome them @sarahkbeau @mitdoc @Sarah_hosey #Nchat -5:01 PM Nov 3rd, 2012
  • LawrenceChen I'm afraid what I might offer as solutions if I were to get called at night.... #nchat -5:01 PM Nov 3rd, 2012
  • lauramariee19 @mitdoc Absolutely. If I had not been diagnosed, I would be so much worse mentally and emotionally due to the dreams. #Nchat -5:02 PM Nov 3rd, 2012
  • TheRealMikeHunt @sarahkbeau @mitdoc @Sarah_hosey We do out #Nchat on the frist saturday of every month. Hope to see you all again -5:02 PM Nov 3rd, 2012
  • convergecollide Welcome, @sarahkbeau @mitdoc &@sarah_hosey! Glad to have you in our #narcolepsyfamily :) #nchat -5:02 PM Nov 3rd, 2012
  • stridesagainstN Had a crazy HH the other night where I felt someone was next to me in bed. Hoped it was hubby but heard TV downstairs. #Nchat -5:02 PM Nov 3rd, 2012
  • MiaRaven @convergecollide And that is why I have a huge bumper sticker on my front door that says "I <3 Obamacare" :) #nchat -5:02 PM Nov 3rd, 2012
  • stridesagainstN So then I was confused and scared. Couldn't move to look and see who was in my bed with me. Realized it was prob. not real. #Nchat -5:03 PM Nov 3rd, 2012
  • TheRealMikeHunt RT @MiaRaven: @convergecollide And that is why I have a huge bumper sticker on my front door that says "I <3 Obamacare" :) #nchat -5:03 PM Nov 3rd, 2012
  • mitdoc @TheRealMikeHunt Thanks, I will try and make the next one as well. #Nchat -5:03 PM Nov 3rd, 2012
  • catthoma @stridesagainstN HH? Missed the acronym... #nchat -5:03 PM Nov 3rd, 2012
  • lauramariee19 @stridesagainstN I hate how often that happens. #Nchat -5:04 PM Nov 3rd, 2012
  • TheRealMikeHunt @stridesagainstN DO IT! #Nchat -5:04 PM Nov 3rd, 2012
  • stridesagainstN @LawrenceChen I had to stop being on-call overnight. On call 7am-10pm every day now instead. #Nchat -5:04 PM Nov 3rd, 2012
  • MiaRaven @stridesagainstn They really don't. Used to have a great job, drove race cars (late model & drag), traveled extensively. Now nada. #nchat -5:05 PM Nov 3rd, 2012
  • TheRealMikeHunt @mitdoc no problem, you should check out @RemRunner stuff too . She is really awesome! #Nchat -5:05 PM Nov 3rd, 2012
  • catthoma Ok #narcolepsyfamily let's plan the next #nchat for 12/1 at 5pm EST! Hope to 'see' you there! #narcolepsy -5:05 PM Nov 3rd, 2012
  • stridesagainstN @LawrenceChen My boss takes overnights. #Nchat -5:05 PM Nov 3rd, 2012
  • MiaRaven @convergecollide That is not the first time I've heard "come to Austin, we're the sane part of TX" ;) #nchat -5:05 PM Nov 3rd, 2012
  • LawrenceChen HH - Hypnogogic or Hypnopompic Hallucinations #nchat -5:06 PM Nov 3rd, 2012
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