# General **URL:** https://forum.livingwithnarcolepsy.org/c/general/8.md?page=2 [Latest](https://forum.livingwithnarcolepsy.org/latest.md) · [Categories](https://forum.livingwithnarcolepsy.org/categories.md) · [Tags](https://forum.livingwithnarcolepsy.org/tags.md) **Page:** 3 --- ## [React! Share your thoughts](https://forum.livingwithnarcolepsy.org/t/react-share-your-thoughts/1109)
**Author:** [@Bens\_Friends](https://forum.livingwithnarcolepsy.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [October 12, 2019, 2:30pm UTC](https://forum.livingwithnarcolepsy.org/t/react-share-your-thoughts/1109 "2019-10-12T14:30:26Z")
How has your life been affected by a disability? (Yours or someone else’s.) What experiences have you had with disability issues? What can you add to the author’s do/don’t suggestions? Share your thoughts with your fel… --- ## [Angel Flight West](https://forum.livingwithnarcolepsy.org/t/angel-flight-west/1114)
**Author:** [@Bens\_Friends](https://forum.livingwithnarcolepsy.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [October 16, 2019, 3:19pm UTC](https://forum.livingwithnarcolepsy.org/t/angel-flight-west/1114 "2019-10-16T15:19:41Z")
Check this out and share. Help for transport to specialists and specialized treatment. https://www.angelflightwest.org/ --- ## [Just a minute: can you give that back to Ben’s Friends?](https://forum.livingwithnarcolepsy.org/t/just-a-minute-can-you-give-that-back-to-ben-s-friends/1132)
**Author:** [@Bens\_Friends](https://forum.livingwithnarcolepsy.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [November 2, 2019, 3:01pm UTC](https://forum.livingwithnarcolepsy.org/t/just-a-minute-can-you-give-that-back-to-ben-s-friends/1132 "2019-11-02T15:01:11Z")
Yippee! It’s a long weekend for some of us! OK, not really a lo-o-o-ng weekend, but for those of us who are going off daylight savings time in the dark hours of tomorrow night, it is an hour longer than an ordinary week… --- ## [Our Board at Work - 12 Years of Changing Lives](https://forum.livingwithnarcolepsy.org/t/our-board-at-work-12-years-of-changing-lives/1163)
**Author:** [@Bens\_Friends](https://forum.livingwithnarcolepsy.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [December 18, 2019, 9:38pm UTC](https://forum.livingwithnarcolepsy.org/t/our-board-at-work-12-years-of-changing-lives/1163 "2019-12-18T21:38:32Z")
We just want to give a shout out to our amazing Board and the work they do keeping the lights on at Ben’s Friends. Through their work and the response of our members they annually produce an amazing video as part of thei… --- ## [Best wishes to you from all of us](https://forum.livingwithnarcolepsy.org/t/best-wishes-to-you-from-all-of-us/1165)
**Author:** [@Bens\_Friends](https://forum.livingwithnarcolepsy.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [December 24, 2019, 3:47pm UTC](https://forum.livingwithnarcolepsy.org/t/best-wishes-to-you-from-all-of-us/1165 "2019-12-24T15:47:47Z")
From Ben and the Ben’s Friends Team, warmest wishes for a holiday season that’s content and comfortable, as well as for success and good things in the year ahead. We know first hand that holidays can be challenging or e… --- ## [A personal Word From TJ (modsupport)](https://forum.livingwithnarcolepsy.org/t/a-personal-word-from-tj-modsupport/1173)
**Author:** [@Bens\_Friends](https://forum.livingwithnarcolepsy.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [March 14, 2020, 4:14pm UTC](https://forum.livingwithnarcolepsy.org/t/a-personal-word-from-tj-modsupport/1173 "2020-03-14T16:14:07Z")
Good Morning Ben’s Friends, and I hope/pray it is for all of you. I have over the last 10 years gotten to know many of you and want you to know just how much I have appreciated all of you over the years, especially now. … --- ## [COVID 19 Testing Criteria](https://forum.livingwithnarcolepsy.org/t/covid-19-testing-criteria/1176)
**Author:** [@Bens\_Friends](https://forum.livingwithnarcolepsy.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [March 18, 2020, 4:49pm UTC](https://forum.livingwithnarcolepsy.org/t/covid-19-testing-criteria/1176 "2020-03-18T16:49:55Z")
Since early March, two groups have been and remain prioritized for COVID-19 testing. These groupings prioritize the likelihood of finding disease (testing those who are most likely to have been exposed), support care for… --- ## [Don’t Get Mad, Get Proactive: A Covid-19 Weapon for YOU](https://forum.livingwithnarcolepsy.org/t/don-t-get-mad-get-proactive-a-covid-19-weapon-for-you/1171)
**Author:** [@Bens\_Friends](https://forum.livingwithnarcolepsy.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [March 13, 2020, 3:16pm UTC](https://forum.livingwithnarcolepsy.org/t/don-t-get-mad-get-proactive-a-covid-19-weapon-for-you/1171 "2020-03-13T15:16:44Z")
Yes, we have a public health crisis. And as rare disease patients, we are “at risk”. Being marginalized as a rare disease patient is nothing new to us. But this time is different! There are 7000 rare diseases that affe… --- ## [A Word From Seenie](https://forum.livingwithnarcolepsy.org/t/a-word-from-seenie/1177)
**Author:** [@Bens\_Friends](https://forum.livingwithnarcolepsy.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [March 21, 2020, 4:45pm UTC](https://forum.livingwithnarcolepsy.org/t/a-word-from-seenie/1177 "2020-03-21T16:45:06Z")
We know. Right now, it just seems like bad news and more bad news, doesn’t it? And yet in some ways, we are fortunate to be rare disease patients. One of those ways is that we are part of a global Ben’s Friends communi… --- ## [Looking for Moderators: Who Comes to Mind?](https://forum.livingwithnarcolepsy.org/t/looking-for-moderators-who-comes-to-mind/1181)
**Author:** [@Bens\_Friends](https://forum.livingwithnarcolepsy.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [April 21, 2020, 8:39pm UTC](https://forum.livingwithnarcolepsy.org/t/looking-for-moderators-who-comes-to-mind/1181 "2020-04-21T20:39:27Z")
Can you think of someone who would make a great moderator here on your Ben’s Friends community? You perhaps? Or maybe someone else on this forum who is understanding and supportive of others? This is a great time to giv… --- ## [SHARE WHAT you’re doing to reach out to others: The Science of Helping Out](https://forum.livingwithnarcolepsy.org/t/share-what-you-re-doing-to-reach-out-to-others-the-science-of-helping-out/1189)
**Author:** [@Bens\_Friends](https://forum.livingwithnarcolepsy.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [May 12, 2020, 3:09pm UTC](https://forum.livingwithnarcolepsy.org/t/share-what-you-re-doing-to-reach-out-to-others-the-science-of-helping-out/1189 "2020-05-12T15:09:17Z")
Helping others is good for your body as well as your mind. That’s what the article in the New York Times said, anyway. Who knew! These are especially difficult days for many of our members: I went on to read the entire… --- ## [SHARE HOW you're reaching out to others: The Science of Helping Out](https://forum.livingwithnarcolepsy.org/t/share-how-youre-reaching-out-to-others-the-science-of-helping-out/1190)
**Author:** [@Bens\_Friends](https://forum.livingwithnarcolepsy.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [May 12, 2020, 3:16pm UTC](https://forum.livingwithnarcolepsy.org/t/share-how-youre-reaching-out-to-others-the-science-of-helping-out/1190 "2020-05-12T15:16:06Z")
Helping others is good for your body as well as your mind. That’s what the article in the New York Times said, anyway. Who knew! These are especially difficult days for many of our members: I went on to read the entire… --- ## [Meds No Longer Working: Need ideas!](https://forum.livingwithnarcolepsy.org/t/meds-no-longer-working-need-ideas/1112)
**Author:** [@RADKINSON](https://forum.livingwithnarcolepsy.org/u/RADKINSON)\ **Replies:** 9\ **Last updated:** [May 6, 2020, 2:54pm UTC](https://forum.livingwithnarcolepsy.org/t/meds-no-longer-working-need-ideas/1112 "2020-05-06T14:54:46Z")
Hello everyone. I’m a new user and this is my 1st post. I’ve been living with narcolepsy for \>20 years. I have tried Provigil, Nuvigil, all kinds of anit-depressants but the only thing that has ever helped is Adderall… --- ## [Raising children - Mothers with narcolepsy and severe cataplexy](https://forum.livingwithnarcolepsy.org/t/raising-children-mothers-with-narcolepsy-and-severe-cataplexy/295)
**Author:** [@Christina\_W](https://forum.livingwithnarcolepsy.org/u/Christina_W)\ **Replies:** 12\ **Last updated:** [April 28, 2020, 2:52pm UTC](https://forum.livingwithnarcolepsy.org/t/raising-children-mothers-with-narcolepsy-and-severe-cataplexy/295 "2020-04-28T14:52:35Z")
Hello, my name is Christina and I am a single mom, raising two small boys. I have had narcolepsy and severe cataplexy since I was born. My boys are hyperactive little monsters! They don’t play…they destroy! Lol. I’m curi… --- ## [Sleep Testing](https://forum.livingwithnarcolepsy.org/t/sleep-testing/1174)
**Author:** [@wolfgal269](https://forum.livingwithnarcolepsy.org/u/wolfgal269)\ **Replies:** 1\ **Last updated:** [March 15, 2020, 1:34pm UTC](https://forum.livingwithnarcolepsy.org/t/sleep-testing/1174 "2020-03-15T13:34:36Z")
I was finally diagnosed, with this lovely thing called Narcolepsy, nearly 10 yrs ago through 2 separate sleep studies (the first one was just over night & the second one a few weeks later was over night plus most of the … --- ## [Narcolepsy affects job hunt](https://forum.livingwithnarcolepsy.org/t/narcolepsy-affects-job-hunt/1087)
**Author:** [@Mark\_Lucas](https://forum.livingwithnarcolepsy.org/u/Mark_Lucas)\ **Replies:** 3\ **Last updated:** [December 6, 2019, 5:43pm UTC](https://forum.livingwithnarcolepsy.org/t/narcolepsy-affects-job-hunt/1087 "2019-12-06T17:43:48Z")
I’m hunting for a new job right now. I’m trying to change careers, my current line is toxic. So that means ground floor, no experience. I’m finding my search curtailed not only by the usual, can’t sit down too long or I’… --- ## [Why do people act weird when you tell them about narcolepsy](https://forum.livingwithnarcolepsy.org/t/why-do-people-act-weird-when-you-tell-them-about-narcolepsy/411)
**Author:** [@Jeanetta](https://forum.livingwithnarcolepsy.org/u/Jeanetta)\ **Replies:** 15\ **Last updated:** [August 8, 2019, 6:07pm UTC](https://forum.livingwithnarcolepsy.org/t/why-do-people-act-weird-when-you-tell-them-about-narcolepsy/411 "2019-08-08T18:07:30Z")
So newly diagnosed mother, active, pretty easy to talk to but when I post Anything about narcolepsy it’s really quiet in FB Land. Why is that? Why the stigma? I even posted some video pretty good one one of Dr. Raj he wa… --- ## [Muscle pain](https://forum.livingwithnarcolepsy.org/t/muscle-pain/1066)
**Author:** [@brontecopping](https://forum.livingwithnarcolepsy.org/u/brontecopping)\ **Replies:** 1\ **Last updated:** [June 9, 2019, 2:59pm UTC](https://forum.livingwithnarcolepsy.org/t/muscle-pain/1066 "2019-06-09T14:59:29Z")
I was just wondering does any one else experience extremely painful muscles. I have tried everything and they always go back to the way they are use to (very tight and sore). I get remedial massages every 2-3 weeks and t… --- ## [Community Help With Summer Fund Raiser For New Communities](https://forum.livingwithnarcolepsy.org/t/community-help-with-summer-fund-raiser-for-new-communities/1060)
**Author:** [@Bens\_Friends](https://forum.livingwithnarcolepsy.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [May 29, 2019, 2:58pm UTC](https://forum.livingwithnarcolepsy.org/t/community-help-with-summer-fund-raiser-for-new-communities/1060 "2019-05-29T14:58:33Z")
Can you help us out? We have set a goal of creating 10 new communities over the next year. It costs $1500.00 to create, set up, and take online a new community. We trying something new for this ambitious project. A group… --- ## [New Insights into Narcolepsy](https://forum.livingwithnarcolepsy.org/t/new-insights-into-narcolepsy/339)
**Author:** [@anon90770670](https://forum.livingwithnarcolepsy.org/u/anon90770670)\ **Replies:** 10\ **Last updated:** [April 29, 2019, 12:16am UTC](https://forum.livingwithnarcolepsy.org/t/new-insights-into-narcolepsy/339 "2019-04-29T00:16:15Z")
According to researchers, "A swine flu vaccine may have caused rare cases of narcolepsy by stimulating antibodies to attack brain cells that help regulate sleep.": http://med.stanford.edu/news/all-news/2015/07/side-effec… --- ## [Sleep "attacks"?](https://forum.livingwithnarcolepsy.org/t/sleep-attacks/286)
**Author:** [@pwntek](https://forum.livingwithnarcolepsy.org/u/pwntek)\ **Replies:** 19\ **Last updated:** [December 17, 2018, 5:36pm UTC](https://forum.livingwithnarcolepsy.org/t/sleep-attacks/286 "2018-12-17T17:36:00Z")
I have a concern about some of the information being circulated by the media. In almost all cases, narcolepsy is defined as subjecting people to "sudden, uncontrollable sleep attacks." In casual surveys, however, it ap… --- ## [Schedule A letter](https://forum.livingwithnarcolepsy.org/t/schedule-a-letter/985)
**Author:** [@ScottyG](https://forum.livingwithnarcolepsy.org/u/ScottyG)\ **Replies:** 3\ **Last updated:** [October 10, 2018, 2:54am UTC](https://forum.livingwithnarcolepsy.org/t/schedule-a-letter/985 "2018-10-10T02:54:03Z")
Hi! I feel like I searched as thoroughly as I could and didn’t find any threads covering Schedule A letters. I’ve worked for Dept. of Veterans Affairs for 10 years. I am starting to look for a new position. First tim… --- ## [Family and Friends](https://forum.livingwithnarcolepsy.org/t/family-and-friends/402)
**Author:** [@Janria](https://forum.livingwithnarcolepsy.org/u/Janria)\ **Replies:** 5\ **Last updated:** [September 21, 2018, 4:22am UTC](https://forum.livingwithnarcolepsy.org/t/family-and-friends/402 "2018-09-21T04:22:32Z")
It is the hottest day ever ...yet I could get myself to this point... and will drag my body through to the end of this very hot March day. My mind is filled with lots of thoughts, I will try to focus long enough to make… --- ## [Treatment/Questions to ask doctor](https://forum.livingwithnarcolepsy.org/t/treatment-questions-to-ask-doctor/409)
**Author:** [@Jeanetta](https://forum.livingwithnarcolepsy.org/u/Jeanetta)\ **Replies:** 3\ **Last updated:** [September 21, 2018, 4:16am UTC](https://forum.livingwithnarcolepsy.org/t/treatment-questions-to-ask-doctor/409 "2018-09-21T04:16:46Z")
Happy Easter!!!! I was just diagnosed with Narcolepsy, not a big shocker as I knew something was not right. I was a stay at home mom for 6 years I just went back to work almost a year ago. I love my job and am now in sch… --- ## [Welcome Dara!](https://forum.livingwithnarcolepsy.org/t/welcome-dara/966)
**Author:** [@Zaid\_BFintern](https://forum.livingwithnarcolepsy.org/u/Zaid_BFintern)\ **Replies:** 1\ **Last updated:** [September 7, 2018, 4:40pm UTC](https://forum.livingwithnarcolepsy.org/t/welcome-dara/966 "2018-09-07T16:40:41Z")
@Daja77 Let’s all give a warm welcome to Dara from Virginia! I would like to take this opportunity to personally welcome you to Ben’s Friends Dara. It seems as though you have been struggling with narcolepsy, especiall… --- ## [Welcome Kim!](https://forum.livingwithnarcolepsy.org/t/welcome-kim/960)
**Author:** [@Zaid\_BFintern](https://forum.livingwithnarcolepsy.org/u/Zaid_BFintern)\ **Replies:** 2\ **Last updated:** [August 20, 2018, 7:14am UTC](https://forum.livingwithnarcolepsy.org/t/welcome-kim/960 "2018-08-20T07:14:45Z")
@Kpcrystal1965 Let’s all give a warm welcome to Kim, the latest member of our community! I really empathize with your experiences with narcolepsy. The silver lining in all of this is that you finally understand why you… --- ## [Narcolepsy at work: yes to ADA?](https://forum.livingwithnarcolepsy.org/t/narcolepsy-at-work-yes-to-ada/952)
**Author:** [@Msnicole39](https://forum.livingwithnarcolepsy.org/u/Msnicole39)\ **Replies:** 15\ **Last updated:** [July 28, 2018, 4:52pm UTC](https://forum.livingwithnarcolepsy.org/t/narcolepsy-at-work-yes-to-ada/952 "2018-07-28T16:52:48Z")
Hello, My name is Nicole C and I was finally diagnosed in 2015 having narcolepsy with cataplexy. I currently am a licensed mental health counselor and managed to get my undergrad and masters degree without treatment. I… --- ## [Never got to MSLT](https://forum.livingwithnarcolepsy.org/t/never-got-to-mslt/931)
**Author:** [@ludicrous](https://forum.livingwithnarcolepsy.org/u/ludicrous)\ **Replies:** 4\ **Last updated:** [May 18, 2018, 10:33pm UTC](https://forum.livingwithnarcolepsy.org/t/never-got-to-mslt/931 "2018-05-18T22:33:15Z")
I have had three sleep tests and last night the fourth with mslt. I don’t have apnea. The tech would not give me the mslt because I did not sleep for six hours and he said I did not go into REM quick enough. He finished … --- ## [Can symptoms disappear and come back years later?](https://forum.livingwithnarcolepsy.org/t/can-symptoms-disappear-and-come-back-years-later/926)
**Author:** [@ludicrous](https://forum.livingwithnarcolepsy.org/u/ludicrous)\ **Replies:** 1\ **Last updated:** [April 24, 2018, 8:05pm UTC](https://forum.livingwithnarcolepsy.org/t/can-symptoms-disappear-and-come-back-years-later/926 "2018-04-24T20:05:45Z")
I’m sure I had worst symtoms when I was a teenager and in my 20s. It seemed to disappear and now 30 years later the day time sleepiness has returned. Is this possible? --- ## [What stimulants for EDS have worked best for you?](https://forum.livingwithnarcolepsy.org/t/what-stimulants-for-eds-have-worked-best-for-you/925)
**Author:** [@ZiggyB](https://forum.livingwithnarcolepsy.org/u/ZiggyB)\ **Replies:** 2\ **Last updated:** [April 24, 2018, 7:10pm UTC](https://forum.livingwithnarcolepsy.org/t/what-stimulants-for-eds-have-worked-best-for-you/925 "2018-04-24T19:10:41Z")
I have recently been diagnosed with narcolepsy type 2 and was diagnosed with 150 mg armodafinil once per day. Unfortunately I have received little to no effect from this medication after 8 days of use. What stimulants ha… [Previous page](https://forum.livingwithnarcolepsy.org/c/general/8.md?page=1) [Next page](https://forum.livingwithnarcolepsy.org/c/general/8.md?page=3)