July #Nchat Recap

July 6th, 2013, marked the 11th Twitter narcolepsy chat, #nchat.  It is hard to believe what started as a little idea to help people with narcolepsy communicate with other people with narcolepsy has become such a wonderful tool for finding answers, advice, and support.  This month, questions came from the suggestions participants wrote in the survey that was distributed a couple of months ago.  If you’ve attended #nchat and haven’t filled it out yet, please consider doing so.  We want to make it even better but can’t do it without your feedback!

Here is a breakdown of questions and answers from this month’s chat.

Q1. What tips do you have for working and/or attending school with #narcolepsy? #Nchat

A1 we meet/talk with teachers & principle of our 8yo son regularly to update them and find out how he is getting on in there #nchat

A1. Use resources available to request accommodations. Do not be afraid to be your own advocate! In school, and IEP may help #nchat

A1. If in school, note the times your body feels most awake then study. Until recently I was taking naps on my lunch break. #Nchat

A1. Here in US it’s important to have and IEP or a ‘504 Plan’ in order to allow for accommodations in school. #nchat

A1 cont. I have ADA set up for school even though I attend online. Just helps protect me. #nchat

A1. For work, talk to your supervisor and/or HR department. Whatever your do, whether work or school, document everything! #nchat

A1. My daughter also was allowed to use a recorder in class in case the teacher said things while she had spells of microsleep. #nchat

A1. Work and go to school from home. You can takes nape whenever you need them, plus a hell of a lot less stress. #Nchat

A1. I have found that being in a fast paced, up-beat environment helps keep sleep attacks away! School- I attend online. #ncha

A1. I have no tips, but certainly need them! Struggling to finish my Masters online. Work? Forget about that right now!! #nchat

A1: I work part-time in the afternoons and also do college studies from home. No tips from me on how to do full work days yet. :/ #nchat

A1. I also changed my work schedule to the latest available time. I work 9-6. Gives me more time to wake up in the morning. #nchat

 

Q2: What advice can you give for someone struggling to achieve understanding and acceptance from family and friends? #Nchat

A2. I have learned to hold unsupportive people at arm’s length and to work on strengthening relationships with the supportive ones #nchat

A2. Also direct them to the all the information on the internet. A good place would be @RemRunner videos. #Nchat

A2. Education can help. We found that some of the brochures on N/C were helpful to let them read. #nchat

A2. Educate them. Print out some fact sheets from reputable websites. This is what I did with my Dad #nchat

A2. I really don’t know. I don’t think that my family & friends believe I have #narcolepsy It’s a joke or something I “think” I have #nchat

A2: I think having Julie Flygare’s book available for my family to read really helped them. #nchat

A2. I think it is also important to stress that N is a neurological condition which has EDS as a major symptom. #nchat

 

Q3: Any advice for someone who has run out of meds to try? Dealing with temperature fluctuations and job issues.. #Nchat

A3. I thought of one piece of advice! Staying hydrated and drinking lots of water helps my #cataplexy at work! Not sure how… #nchat

A3. Running out of meds can be a problem, esp with the anti-cataplexy drugs. Can have severe rebound cataplexy if stopped quickly. #nchat

A3. Some have had success with #glutenfree and/or #paleo diets to help with #autoimmune disorders, N included. #nchat

A3. Don’t give up. It took me 3 years and three doctors and one nero, to find something that kinda works. Trust me it gets easier #nchat

A3. Assuming Xyrem has been explored as an option, getting healthy in general is the next logical step. Clean eating, exercising, etc #nchat

A3 #NCHAT – Hands down… diet!!! Gluten free is a good start. It has been the most helpful thing for me!

A3. Blue light blocking glasses and a sleep mask have also improved my nighttime sleep, lessening daytime symptoms. #nchat

 

Q4: #Cataplexy – when did it start?  Same time as excessive sleepiness or after? #Nchat

A4. #NCHAT hard to say. I can remember microsleeps /auto behavior from 3rd grade, but cat n 7th grade. my mom says cat before then though

A4. I don’t have it. And if I do get it, I asked my gf to kill me. #nchat

A4 – my son has only reported 1 wobbly knee episode about 3 mths ago. Praying it won’t progress any further #nchat

A4: I think #cataplexy was mild as a child, progressively worse as I age. Had full collapse for the first time in 2011. #nchat

A4. The EDS can be harder to recognize at its onset, but the start of cataplexy is pretty obvious in many PWN. #nchat

A4: I have N w/I cataplexy, but worry about developing it #nchat

A4. #Cataplexy scares the crap out me #nchat

A4. I was having muscle spasms, neuropathy and falls. They were focusing on treatment not cause so it kept getting worse. #nchat A4. After 1 yr of this, I mentioned nightmares and sleep paralysis which got me a sleep study. Took another year to get #cataplexy dx #nchat

A4: Not sure… Probably sleepiness first, but I only completely collapsed from laughter a handful of times in my teens. #nchat

A4. Sometimes I wonder if certain things are just side effects of my meds, or actually #cataplexy. How would I know? #nchat

A4. #Cataplexy started first during my 18 month attempt at getting a dx. I think it stumped doctors and caused the delay in dx. #nchat

A4: #cataplexy is something I haven’t had to tackle. Interested in everyone’s responses. #learning #nchat

A4. My daughter complained about symptoms which later realized was cataplexy, we her parents noted the EDS first. #nchat

A4: I still don’t know when my narcolepsy started, so I’m just assuming that cataplexy came along later. #nchat

 

Q5: What is the best thing you’ve learned from living with #narcolepsy? #Nchat

A5. I’ve learned how strong we are united. The more we learn from each other, the more we can teach others. #unitedinsleep #nchat

A5. How in be more in tune with the body’s rhythms. Before my dau had N/C, we all felt that if you pushed hard enough, could get thru #nchat

A5. Who my true friends are!! #nchat

A5. That I am really good at taking naps. And learning that I’m not alone, I have all you guys(mostly ladys) that I can count on. #nchat

A5. Someday I’ll somebody with #narcolepsy in Az #nchat

A5 #NCHAT Best thing I’ve learned…hmmmm.. HA HA! I guess to..yeah, got nothin @ the moment. HA HA! Sorry… having one of those down days

A5. I’ve learned to make more time for things that make me happy and spend less time on things that don’t. #nchat

A5: I mean, I’ve learned a lot about sleep, which is interesting. #nchat

A5 that I am not crazy or weird because my dreams are alive. That I just need to get to sleep sometimes. There’s life there! #nchat

A5. That there’s a reason for everything. It’s good to find so many answers about yourself. :) #Nchat

 

The next chat will be on August 3rd.  We hope to see you there!  (And for a little teaser…September will mark a full year since #nchat started!  We are working on putting together a special chat to celebrate!)

Comments

  1. Mairead Lawless says:

    Brilliant. Thanks for the update.

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