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Idiopathic Hypersomnia Myths

There are many Myths surrounding Hypersomnia. Understanding these Myths can help you to deal with it and for others to support you in effectively treating your Hypersomnia. If your peer, friend or fam

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Idiopathic Hypersomnia Myths

Idiopathic Hypersomnia Treatments

There are many different approaches to treating Idiopathic Hypersomnia (IH). As each person can respond differently it is normal for different treatments to be trialed until a treatment is found that

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Idiopathic Hypersomnia Treatments

Idiopathic Hypersomnia

Hypersomnia (sometimes referred to as hypersomnolence or non-REM narcolepsy) is a disorder characterized by excessive sleepiness, extended sleep time in a 24-hour cycle, and the inability to achieve t

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Idiopathic Hypersomnia

Support For Those With Hypersomnia

The support that is available to sufferers of Hypersomnia varies greatly from country to country. Below are links to various places you can seek support.   International Living With Hypersomnia F

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Support For Those With Hypersomnia

About Us

The Living With Hypersomnia website is maintained by volunteers from around the world. Our goals with this website are to: Provide reliable information for those suffering from Hypersomnia as well as

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About Us

Photo Scavenger Hunt – Best IH Wakeup Method

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by on April 11, 2014 at 8:55 pm

alarm-clockFor people with Idiopathic Hypersomnia, waking up in the morning is one of the HARDEST parts of the day. The text books are filled with descriptions of the lengths patients go to in order to wake up and make appointments on time. But a text description is one thing. Actually SEEING those lengths is quite another! So starting today we are calling for photos that demonstrate the lengths you must go to in order to be awake on time.

Your mission, should you decide to accept it, is to take a photo of what wakes you up in the morning. These photos will be used to create a collage to better demonstrate to others the extreme lengths that are needed for many of us to wake up each day.

It doesn’t matter what your wakeup method is! Just take a photo that clearly demonstrates it and share it with us. The Facebook Group has had stories of people using means such as:

  • Loud sonic boom alarm blocks
  • Bed shaking vibrating alarm devices
  • Determined family members (or pets)
  • And in one case even a WINCH!

But whatever your method is, take a photo and send it in! Your photo will help us raise awareness for one of the major challenges of having this disorder.

Please upload a photo of how YOU wake up using the link below:
http://dbinbox.com/lloydy

Note: Photos uploaded will be used in a collage in the future for the purpose of raising awareness about Hypersomnia. Please don’t upload anything unless you are happy with it being seen by the public and used on the Internet. Photos are uploaded anonymously – I just see the photo itself, not who submitted it.

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Living With Hypersomnia in Texas, USA

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by on April 11, 2014 at 8:00 am

This photo comes from Shelli in Texas, USA:

hypersomnia-shelli-texas

This photo comes from Rothko in Texas, USA:

rothko-living-with-hypersomnia

This photo comes from Susan in Texas, USA:

susan-texas-living-with-hypersomnia

Do you want to submit your photo too and receive a Living With Hypersomnia wristband for your efforts? Check out this link for what you need to do to be involved.

Or click this link to see all the submissions so far:
» Photo submissions from those Living With Hypersomnia

Hypersomnia Patient Featured in Medical Assisting Newsletter

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by on April 1, 2014 at 7:41 am

sherry-hypersomnia-cubeRecently Sherry, a person living with Hypersomnia and active member of the Facebook Community, was chosen to be featured in the National Medical Assistant Insider Newsletter. This four page feature article goes through many aspects of her work, life and history.

While many people living with Hypersomnia are unable to work, Sherry is an exception. Her motto of “Never Give Up” has shown that for some people with Hypersomnia it is still possible to hang in there and battle it out! I’m not for a second saying it is easy, but seeing someone like Sherry achieve so much despite the severity of her Hypersomnia can serve as inspiration for us all!

To read the article please follow the link to read the four page PDF:
Read Issue # 6 of the National Medical Assistant Insider Newsletter

Living With Hypersomnia in Florida, USA

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by on March 31, 2014 at 4:02 am

This photo comes from Sean in Florida, USA:

sean-florida-living-with-hypersomnia

Do you want to submit your photo too and receive a Living With Hypersomnia wristband for your efforts? Check out this link for what you need to do to be involved.

Or click this link to see all the submissions so far:
» Photo submissions from those Living With Hypersomnia

Spinal Tap for Hypersomnia at Emory University

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by on March 26, 2014 at 6:15 am

Recent research suggests that Hypersomnia is likely caused by an endogenous benzodiazepine-type substance in the brains of those who suffer from it. Or, essentially, the patient’s own brain is sedating itself by producing the equivalent of a sleeping tablet, such as Valium! But, to prove whether this theory is applicable to each patient, the spinal fluid must be tested for levels of this so-called “sleepy juice”. Thanks to research published in 2012 by Emory University, we know that control subjects have a certain “sleepy juice” level, while 80% of those tested with symptoms of Hypersomnia show levels that are significantly higher than those of control subjects.

This YouTube video shows the process of undergoing a Spinal Tap or Lumbar Puncture to extract spinal fluid so that it can be tested for levels of “sleepy juice”. Watch the video to see what is involved:

Currently, this spinal tap testing is only being conducted as part of research at Emory University. How to obtain an appointment at the Emory Sleep Center was a frequently asked question at the 2014 Hypersomnia Conference, and a document was put together detailing the information you must provide if you wish to be considered for an appointment. As part of your medical care, the doctors will conduct a spinal tap if deemed appropriate, to check for your “sleepy juice” levels. You can download the Patient Process Information by clicking the link below:
http://www.livingwithhypersomnia.com/wp-content/uploads/2014/02/Emory-New-Patient-Process.pdf

For questions relating to this information please contact The Emory Sleep Center by using the contact information on the first page of the document.

Podcast of The 2014 Hypersomnia Conference (With Diana)

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by on March 22, 2014 at 3:53 am

lwh-thumbnailThe first episode of the Living With Hypersomnia Podcast Show is now available! Recorded on March 17, 2014 it stars Diana Kimmel, one of the key organizers of the 2014 Hypersomnia Conference.

You can access the Podcast on iTunes. Follow the link to ‘View in iTunes’ and you will have options to SUBSCRIBE to our future podcast episodes as they become available:
https://itunes.apple.com/au/podcast/living-hypersomnia-podcast/id845309171

Or directly access the Podcast Audio here:
http://s3.amazonaws.com/LWH-Podcasts/001+Welcome+and+Conference.m4a

Transcript of the Podcast
LJ = Lloyd
DK = Diana

[Intro: In a world of Hypersomnia, where the desire for sleep is never fulfilled: There is just one Podcast. Welcome to the Living with Hypersomnia Podcast Show. Please welcome your host.. Lloyd]

Lloyd: Welcome to the first Living with Hypersomnia Podcast! And I’m really, really excited to be here today with Diana, who was one of the organizers for the Conference, along with Jenn – welcome Diana!
Diana: Thank you for having me, Lloyd.
LJ: No worries. No worries at all.. And before we get into our interview with Diana, I’d just like to share a little bit about what to expect from the podcast in the coming months. This is something that’s brand new. I’ve never done a podcast before and as far as I know this is the only podcast in the world specifically devoted to people with Hypersomnia. So what I’m hoping is that we’re going to be able to have a show coming out of between a half hour to an hour in duration. (And) You’re going to be seeing those come out at least once a month, maybe more frequently at times, maybe more slowly at other times. (And) We’ve got some GREAT guests lined up like, the second podcast is going to be with Dr. David Rye talking about the Multiple Sleep Latency Test.
But this first podcast today, I’m going to be talking with Diana about the 2014 Hypersomnia Conference. (And) There was a lot of excitement about this Conference. For those of you who haven’t heard about it yet, it is the first time there’s been a conference dedicated to Hypersomnia and I’m just thrilled that Diana’s here today. Diana’s one of the Conference organizers, along with Jenn, who put this whole Conference together. (And) Diana’s going to share with us how it went, what she learned, and what to expect in the future. So welcome Diana.
DWK: Thank you.
LJ: No worries. Now for those of you who are just tuning in who haven’t heard about the Hypersomnia Conference before, how did this all start?
DWK: Well it started about December of last year. Thinking about the need for awareness and bonding of people with Hypersomnia together and creating an environment of acceptance.
LJ: Ok, so we’re talking December of 2013, right?
DWK: Exactly.
LJ: And.. Like, why a conference?
DWK: Well I had attended other conferences before and noticed that there was a huge feeling of unity after uh, attending a conference together. You get to talk to somebody who actually understands how you feel, uh, what you go through on a daily basis, and what your needs and fears are. This was definitely an opportunity for Hypersomnia. We had decided in early uh January, I guess, to go for it, booked it, created a poster, and we ran with it. We expected possibly 30 people- hoped for 30 people. L: Ok hang on; hang on, when we were hoping for 30 people; how many people did you book the room for?
DWK: Uh.. Well I had the minimum of 45..
LJ: {Giggles}
DWK: And I was nervous about that.
LJ: Yeah, cuz I still remember us chatting on Skype and I think I was what, in Thailand at this point?
DWK: You were, which was a challenge trying to do the first Hypersomnia Conference hoping to get the support of 30 people and trying to do it in different time zones thanks to Skype.
LJ: And so the poster went out..
DWK: The poster went out. We, I remember Jennifer and I sitting there watching um, view by view. It would click and show you every time. I remember being excited when we hit 10 views. It just snowballed from there. Uh, by the next day we put the tickets on sale, again hopeful for 30, and as each day went by we continued to consistently sell 2-3 tickets a day.
LJ: So hang on like, so from when you announced it from when the tickets went on sale from Eventbrite; how soon was the first sale?
DWK: Uh.. less than 2 hours.
LJ: Wow. {Giggles}
DWK: Yes.
LJ: And.. like.. those 50 tickets sold out?
DWK: We fastly approached 30. It.. was.. very apparent that we needed to grow from here. We.. continued to.. contact the conference center and they worked with us in growing. Nervously, we went to 60.
LJ: {Giggles}
DWK: We sold that out within another 2 weeks. Um, a couple days went by again.. we increased to 85. Once again [we] sold that out within 2 weeks.
LJ: Cuz I remember like, you would go to the Evenbrite page and it would show like {Giggles} how many tickets were left.
DWK: Yup. {Giggles} People might have thought we were a little crazy. Uh, but we only added what we could possibly uh.. seat. And every time that met that expectation; we had to grow. Which, we added more tickets. Um..
LJ: So what was, what was the final… what was the final number of people who could attend?
DWK : Well the final number of people uh 2 weeks before the Conference; we kept at 95. We got very concerned because within 1 hour of selling out our wait list went to 10 people.
LJ: 10 people?! {Giggles in disbelief}
DWK: So we got on the phone immediately. The conference center again worked with us uh, the best they can. They upped our room to 140. We nervously did that again because we weren’t sure that we were going to be able to sell that amount of tickets and it costs more money to increase the size.
LJ: Cuz like what, as soon as you agree to 140, like you’re liable to pay for that extra space, that extra room.
DWK: Absolutely. So… um…
LJ: Whether we sell the tickets or not.
DWK: Yes- and there was no guarantee that those people on the waitlist were going to buy so this was a-uh, jump in faith once again.
LJ: And while the tickets sales were going on like you were juggling t-shirts..
DWK: Well t-shirts, name tags, lanyards.. all those supplies in general. We thought we were going to possibly tap out. Best case scenario: 50. So everything had to grow as the uh, event grew.
LJ: So it all came together, 140 people. That was the maximum, right?
DWK: Well.. we ended up with uh, Conference-goers, speakers, and special guests.. 149. Unfortunately we did leave somebody on a wait list because up until 24 hours beforehand we could not grow any larger.
LJ: Ok, ok and.. what? That.. like.. {Giggles} I still remember that there wasn’t enough lunches for everybody.
DWK: {Giggles} It was uh.. one of the biggest conferences…
LJ: Let, let me correct myself; There was enough lunches for all of the ticketholders.
DWK: Yes, the biggest conflict we had was our room size was always able to grow but the amount of people we could fit in the lunchroom was the issue. So we actually had to break our Conference-goers into 3 lunchrooms.
LJ: Oh my goodness.
DWK: Which that was our biggest challenge and in including as many people as possible, we were willing to take that on- and everybody was great about that. So it actually got to the point where in order to get as many last minute attendees as possible, some of us actually decided to eat our lunch elsewhere-
LJ: {Chuckles}
DWK: To try to accommodate as many people as possible. I do remember there was a couple of us sitting on the floor um, of the conference room itself while the lunch was going on.
LJ: And now we haven’t mentioned this yet, but the Conference was held in Atlanta, Georgia in the United States. Um, what was the reason you guys chose Atlanta as the venue?
DWK: Well, 2 out of 3 of the Conference-goers resided in Georgia, which was great. It’s also very close…
LJ: 2 out of 3 of the organizers, you mean right?
DWK: Um, yes. We’re actually on the same continent, where um, you were not.
LJ: {Giggles}
DWK: We are very close to Emory, which really helped us in getting the support of the speakers, which was…
LJ: And tell us about that, who were the speakers?
DWK: The speakers were… We had uh, Dr. David Rye. We had Dr. Lynn Trotti and Dr. Jenkins. All from Emory.
LJ: Andy Jenkins.
DWK: Andy Jenkins, who was… spectacular!
LJ: Now I know you spent quite a bit of the Conference like, outside, keeping everything running smoothly. But I was lucky enough to see these presenters and it was really interesting to see how peoples’ like perceptions changed in the room as the day progressed. Because it started with like a gentle introduction and an overview of the history of Hypersomnia from Dr. David Rye.
DWK: Yes.
LJ: And then Lynn Trotti… Dr. Trotti went through all of the conventional treatments. So these are things like the stimulants such as Adderall, Dextroamphetamine.. The Afonils like Modafinil, Provigil, Nuvigil..
DWK: Exactly.
LJ: And then following Dr. Trotti we had Dr. Jenkins. [And, I mean,] For those of you unaware of Dr. Jenkins, his background is an NEBS in Anesthetics, I’m gonna say. {Giggles} I can’t say those other big words! [And] He really busted open the whole GABA issue and how the GABA System in the brain works. Then he really got into some hardcore science.
DWK: He did. Not only did he get into hardcore science but he did keep it light, refreshing, and actually at times comical, um, keeping everybody totally engaged.
LJ: And it really set the scene beautifully for the afternoon when um, Dr. Trotti started getting into some of the newer treatments. Things like Clarithromycin, that antibiotic. Things like Flumazenil.
DWK: There was great excitement with the outcome of Flumazenil, yes.
LJ: I still remember everyone’s faces when we’re like, “Dr. Trotti has requested that we don’t record this second session.”
{Giggling}
DWK: Which I think was fear and excitement all at the same time.
LJ: And I mean, like… what was the feeling you got from the people who were there? Like..Was.. cuz you could expect all these sleepyheads getting together in one place. You wouldn’t blame them if it was just a room full of people sleeping propped up on conference chairs.
DWK: I would agree. I had the great fortune of speaking to a lot of these people before the Conference and then watching them come to the Conference, and then get involved in it. And a lot of the tone beforehand was… I don’t know how I’m going to stay asleep. I am…
LJ: How I’m going to stay awake. {Giggles}
DWK: Awake, yes! {Giggles} Um, a lot of the thing is your social skills are affected by Hypersomnia. So the biggest fear was, “I’m nervous about connecting with people. I’m a very shy person.” I watched that all change Friday as people were arriving and checking in.
LJ: Cuz that’s right.. like the Conference was on Saturday. The one day Conference.
DWK: A lot of people arrived on Friday though, because we are sleepyheads. We need to get some sleep and be able to function at 9:00 in the morning.
LJ: Whose idea was a 9 am start? {Chuckles}
DWK: Well… when we realized that the Conference number was growing, so did our itinerary and we had we had so much information to pack into such a small day. So we had to um, push the limits of our sleepyheads and all the medicines involved and get people out of bed. Everybody thought it would be more of a challenge.. but the excitement grew. The adrenaline kicked in.
LJ: I did hear stories… like Jonas visited from France and there was 2 people telling me they were banging on his door because they promised his mom to make sure he was awake.
DWK: Yeah… there was a couple people asking if this person had checked in or that person had checked in. We had to, had to follow up on a couple people, but the… I would say we had almost 100% success in getting everybody down from their rooms. I think the hotel itself did a great job with the wake up calls apparently. I did let them know ahead of time that that might be a high demand that they might face.
LJ: So sorry I cut you off before. You were starting to talk about Friday night.
DWK: Alright so Friday night people were starting to arrive… and like myself um, may be socially scared of the whole situation of meeting new people and talking about your illness and how it affects you. But what I noticed was amazing. People came together very quickly. We had nothing formally planned at all. The next thing I knew there was about 30-35 of us sitting down in a room having dinner… Talking, excited, and just totally overjoyed to be having dinner.
LJ: And with the disorder thing, you could pick the sleepyheads a mile off or..?
DWK: You know, ironically not. One thing I had witnessed at another conference for a Sleep Disorder was that adrenaline does kinda kick in… and you can’t live off adrenaline but for a simple thing like this it does help. Um, there were some yawns. There was some sleepiness. But A LOT more participation than I had intended on seeing.
LJ: What time did things wind up on Friday night? Was it a late one?
DWK: It was not really a late one. I mean, most people headed up early {Giggled}, and us, we’re a quiet group.
LJ: {Giggles} What a surprise.
DWK: Um, I think pretty much by 9 or 9:30 everybody was heading in with the hopes of an early morning and being successful at getting there.
LJ: Cuz unfortunately I wasn’t able to be there Friday night.
DWK: No, you really missed it!
LJ: Yeah.. and I mean that’s one of the things that when reflecting on this for me; If there’s going to be any future conferences it’s like the action starts the day before and there’s still some fun to be had the day after.
DWK: Yeah, I think going into this the next time we would definitely want to look into uh, some social things the day before and the day after and maybe a trip- and organized trip, something like that. But definitely focusing more on the relationships, bonding, and the communication between the attendees.
LJ: Yeah, absolutely because I mean, a lot of people asked like, “Can we do a live stream?” “Can we webcast it?” “Can we do A, B, or C?” But the thing that really struck me is what the speaker said was really awesome. But connecting and bonding and meeting people… that was just something else.
DWK: Yeah, that you cannot get through a video or live streaming. Watching it, listening to it, and being a part of it can’t be duplicated.
LJ: And yeah I mean, I mean that’s something we would just love to do for future Conferences but probably something worth saying at this point is that we did our best to record as many parts of the Conference as we could and with the exception of some of the parts that Dr. Trotti has requested that we do not share about the new treatments and the newer research that is not yet published um, we’ve got a dvd in the works. A dvd sharing the majority of the information in this Conference. So if you haven’t already joined the Facebook group, Major Somnolence Disorder, make sure you join that Facebook group because the minute that dvd is finished, the minute that dvd is available, people will be hearing about it first.
Diana, you must have had so many requests from people who couldn’t make it..
DWK: We did. [And] it, you know, it’s hard to not meet those requests. But we did our very best and we knew that the first and foremost thing to really bring to the Conference was that personal connection. So the dvd is the next thing that we can possibly do and I look forward to it myself, watching it in its entirety.
LJ: Because I mean, there were people from all over the United States.
DWK: Yes.
LJ: But depending on your level of sleepiness it’s not necessarily an option.
DWK: Yeah, it’s a lot of information to take in and uh.. a dvd will help for everybody: Attendees and Non-Attendees.
LJ: So for the attendees that were there like, do you remember off the top of your head? Like I know I came from Australia, which was probably the furthest that anyone came; 1100 miles for anyone that’s wondering. But um, I wasn’t the only international…
DWK: No, you weren’t. France… Canada…
LJ: That was Janet from Canada.
DWK: Janet from Canada. We had Jonas from France and I think that may have been it internationally.
LJ: So what about the different states? We had..
DWK: States all over. We had Texas, Florida, um Oregon…
LJ: I got some cheese from Wisconsin…
DWK: [North] South Dakota, Minnesota..
LJ: New Jersey..
DWK: Vermont, New Hampshire.. I, I didn’t even get..
LJ: California
DWK: Yes. I think I said Minnesota.
LJ: Texas?
DWK: We did say Texas, yup. I would say a lot from Georgia.
LJ: So I mean have absolutely no idea when it comes to geography. I mean they don’t teach the states of America in Australia. But I was just blown away at how many people were able to come.
DWK: We had a wide vast of people throughout the United States. That was another thing that pleasantly surprised us was the willingness to trust us in this Conference and believe in us… and that was important for us to follow through and give the people what they wanted.
LJ: And I mean, it’s not an easy task. I was just super appreciative because some of these people… they’re single parents…
DWK: Mmm-hmm.
LJ: They’ve got pets, they’ve got responsibilities and they somehow found a way to either delegate or outsource {Giggling} those responsibilities.
DWK: I heard lots of grandparents were called in… friends, aunts and uncles… everybody to help out a little bit. Both with travelling… and everything.
LJ: Yeah… {Giggling} I heard some horror stories about the days after the Conference. People sleeping through flights and…
DWK: Yeah I mean, I was in Georgia myself and… Sunday was definitely a recoup day and um…
LJ: Did anyone miss their flight on the way to the Conference?
DWK: I do not believe anybody missed their flight to the Conference. They were pretty sleepy getting there, but everybody did arrive.
LJ: That’s amazing. I did hear about some delays though from some parts of America covered in snow and ice.
DWK: Yes, 1 or 2 of those. I did hear about some close calls. Maybe uh, getting to the airport a little too late. But everybody did arrive.
LJ: So what were some of the highlights for you? What were some of the things that really stood out as Kodak moments that gave you a warm and fuzzy feeling in side?
DWK: You know… again, I was there on Friday as people were first starting to arrive and you can tell the hesitation um, the apprehension in people… by Friday evening watching people talk, bond, and connect- that was really huge for me. Um, the overall kindness and willingness to help from everybody really took me aback. I was… overwhelmed by the amount of offers and people that wanted to help- they wanted to be more than just an attendee.
LJ: And I guess it wasn’t just sleepyheads that offered to help in the afternoon after the Conference.
DWK: No, we had quite the amount of Supporters! When we first started to talk about this Conference we didn’t even take that into consideration. We mainly talked about the Hypersomnia as a whole. As the Conference grew, so did the amount of Supporters and they were a huge part in this.
LJ: Because I mean, not just in terms of donating their time. Not just in terms of donating their effort. Some of them also donated in a financial sense. Like all of the printing, as I understand it.
DWK: Absolutely, our printing was 100% donated. All of the hands on work as far as putting the bags together, gathering the materials, [and] cutting out nametags… We delved into some friends.. We called in everybody we possibly could to make this happen.
LJ: And what, printing the merchandise? There was like steep discounts on the printing of the…
DWK: Steep discounts, if not almost free. Uh, again it kept our costs down and helped us give more of a donation at the end.
LJ: And in terms of the people who were able to volunteer that day I mean, of course there was yourself, there was Jenn, there was Renee, who was manning the registration desk.
DWK: We did. We also had Cat, Mouse, and Rye helping out with some t-shirt sales. We had Janelle and her husband helping as well.
LJ: Jeff.
DWK: Jeff, yes. They had actually made some t-shirts and some mugs up and brought them to sell for donation.
LJ: Then we had sleepyheads… We had Beth. We had Diane.
DWK: We did. We had Sherry. We had a lot of help from there.
LJ: Scott.
DWK: Scott was a huge help.
LJ: And I mean, there’s probably people we’re not remembering right now. Even people like Prabhjyot.
DWK: Prabhjyot was awesome. He stepped up to the plate as far as recording.
LJ: For those of you who don’t know, Prabhjyot is… how would you best describe him? He’s involved with Emory University…
DWK: I would say Prabhjyot is Dr. Rye’s right-hand man. [And] He’s up close and personal with each of us when we go into the Sleep Lab and…
LJ: And he was there the entire Conference. We have Prabhjyot to thank for the dvd because he was there….
DWK: He donated his entire day, which is probably a rare day off. He uh, gave up his time and he helped us out enormously with that.
LJ: And you mentioned briefly that there was some selling of t-shirts and mugs.
DWK: There was. This Conference ran at such a tight budget to make it affordable to everybody that was coming. We had to think of some creative ways to um, help out and make sure that we came out ok, if not come out with a donation. We had some t-shirts, we had…
LJ: Do you-do you remember what the budget was looking like um, just based on the hard costs, the-the bag of the delicates get included, the contents um, the seats that they have in the conference room, their lunch, like all of those…
DWK: It was scary. Again, we try to keep it as affordable as possible, but in doing that it kind of tightened our budget up.
LJ: Cuz I remember when we had like 90 people booked and confirmed.
DWK: And we had a huge profit at that point in time and we were thrilled to see it. It was a total amount of $98.
LJ: And that’s on over $10,000 worth of revenue. {Giggling}
DWK: Yes. You would think that we had all these people so we must have been making great money. Unfortunately, I would say probably 70-80% of each ticket sale went to… lunch and room rental, easily.
LJ: Cuz that was the thing that blew me away. It’s like, the cost of everything; hiring a screen, the sound system so that everyone could hear us. All of those costs, they add up so quickly by the time you add tax and equity and all those.
DWK: Yeah, every little thing: The chair rental, you also rent rooms for the lunches. Everything costs… down to the Attendee Packets. The folders, the lanyards, the nametags… everything just adds up so quickly. And there was not a lot of money left over.
LJ: One of the things announced at the outset of this Conference was that any money raised in surplus to needs was going to be donated towards supporting people with Hypersomnia either to the Foundation or the research going on at Emory and… so I’m guessing not much of that came from the ticket sales.
DWK: No, absolutely not. Our goal was to try to come out with something. But we also wanted to make sure we rebuffered it through the t-shirts, the raffle, the mug sales, everything helped in that.
LJ: So run us through the raffle. I remember the tickets were what? 1 ticket for $2 or 3 tickets for $5?
DWK: Exactly.
LJ: And the raffle prizes were…
DWK: Well, we noticed that the biggest straw was, let’s be honest, Mr. Lloydy Pops and…
LJ: {Giggles}
DWK: Dr. David Rye was another great one. So one of the best prizes we could come up with was a little one-on-one time with those two- with you two. So we offered a breakfast with Dave and Lloyd, which..
LJ: Breakfast a day after.
DWK: Breakfast a day after, which meant another early morning for a hypersomniac but it was an excitement thing.
LJ: That was won by Ally, right?
DWK: It was-It was. We also had a FitBit, a book donated by Julie Flygare…
LJ: So for those of you who don’t know the FitBit is like this wrist strapping device that um, it counts how many steps you have and it’ll track how much you sleep and..
DWK: It is. It’s a great little device to keep up with your movement and your sleep.
LJ: And the book was donated by?
DWK: Julie Flygare. She had sent a signed copy for us to raffle off.
LJ: And that’s her memoir about her dealing with her experience with her sleep disorder narcolepsy.
DWK: And we had several other prizes.
LJ: I just love… like, somebody donated this sleepy little garden gnome.
DWK: Exactly, exactly. The people were excited to bring some things as well for us.
LJ: Um, I know there were some donated magazines. I think the Discover Magazine .
DWK: Yes we did.
LJ: And I know we got those signed by Dr. Rye and Anna Sumner, who is sort of “Patient #1” when it comes to Flumazenil.
DWK: Gracious to have her as well.
LJ: We didn’t just have the t-shirts that Janelle and her husband Jeff made. Actually, I’m wearing one right now. It says “Hypersomnia Sucks”.
DWK: With a little vampire on it.
LJ: And there were also these little mugs that they made with these little zombie caricature. The Hypersomnia Foundation was also selling t-shirts. There was the um, iHope t-shirt with the white circle with the Flumazenil on it.
DWK: The Apples and Oranges Narcolepsy versus Hypersomnia.
LJ: If Dr. Rye was here right now he would be telling me this is such an important distinction we need to make.
The difference between narcolepsy being seized by sleep and with hypersomnia being consumed by sleep. At the moment, and this is one of the take home things from the Conference, at the moment there are so many people with narcolepsy. Doesn’t really matter about having narcolepsy or hypersomnia because the treatments are the same. But that’s just not quite true anymore.
DWK: No and that was one of the things a lot of the people walked away with knowledge of.
LJ: {Giggles} There was one point I remember Dr. Rye making some comment about the MSLT.
DWK: Yes! Um, I think that quote went viral.
{Giggles}
LJ: I won’t repeat it because it’s not PG, but those of you who are listening to this who were at the Conference will know exactly what I’m talking about.
DWK: Absolutely… and you know again, with such a serious subject and we had a lot of material to take in… But our presenters gave us giggles and a lot of great humor throughout the Conference as well.
LJ: Now… any Conferences like this can’t be all smooth sailing, especially with so many people involved.
DWK: Of course not! You have a lot of different personalities and visions and uh..
LJ: Were there any like points of conflict that um, that you can’t talk about them that uh…
DWK: {Giggles} Well listen, it started from day one. On ticket price… times..
LJ: But that was it, right. Once we announced the ticket price people were really honest with us and gave us some really honest feedback.
DWK: We got some honest and let’s just say negative feedback on ticket price. We tried to justify it and it wasn’t really justify, it was explaining it. Um, and I think that people didn’t know what to expect for that price. So I think in the end, it turned around, people understood it and people supported the ticket price.
LJ: And what were some other points of conflict? I remember between you and me the whole point of pillow cases.
DWK: Yes, well… as much of a personal event as this was, it still had to come down to some business decisions. Ya know, you always have one organizer that wants to do more than the other. Pillowcases was a big thing.
LJ: For those that aren’t familiar with this issue, does the ticket price include a t-shirt with the Conference logo or do we do something a little bit unique to represent the fact that we’re sleepyheads.
DWK: {Giggles} And that’s where the pillowcase came in. Some interesting discussion came about after that because well, what do we put all these things in? So we need a bag. And I remember Lloyd trying to turn a pillowcase into a bag.
LJ: And that was not gonna work. {Giggles}
DWK: So we had some bumps in the road. But we had it all worked out.
LJ: And I mean it was sort of interesting I mean, coming from Australia: Everything’s bigger in America, I’m coming to find out.
{Giggles}
LJ: When I first saw the pillowcase, I was like OH MY GOODNESS!
DWK: I don’t think you understood the King, Queen pillowcase concept.
LJ: {Laughs}
DWK: I think we could have cut it in half and had a pillowcase and a bag.
LJ: But seriously, if you’re a hypersomniac and you don’t have a king-sized pillow?
DWK: We have a problem.
LJ: We have a problem. But it’s a good excuse to go out and get a king size pillow if you don’t have one already.
DWK: In hindsight, the pillowcases were just awesome and cute. Everybody got a kick out of them. At the end of the day it was nice to have a bag, a pillowcase, and a packet of information. And uh, it all worked out.
LJ: And I mean, along this journey I was in a position to see the huge amount of time you and Jennifer put into this. Can you explain to me what sort of motivated you and Jennifer to put so much time and energy and effort into making this event a success?
DWK: For us, it really went back to October. We had attended a different conference for a sleep condition and…
LJ: That was the Narcolepsy Network?
DWK: It was. And we had had a few hypersomniacs there and the overall thing was well we really need to connect with people who really understand us. And I kinda started saying that if we wanted to be treated like a real disease then we have to start acting like one. And it just seemed like a great time with you coming in from Australia, uh.. having Dr. Rye here and Dr. Trotti and as far as the consensus on Facebook was people wanted to start meeting each other. And this was just all for a great opportunity.
LJ: I know, there comes a point where you start building friendships online and through different mediums…
DWK: Oh absolutely.
LJ: It just like reaches a point and you’re ready.
DWK: It is. You get to that point where it reaches that next step, that next level. And you know we had done an Attendee Feedback form and one of the quotes that sticks in my head the most was, “When I came to the Conference I expected… weakness and found strength.” That really sums it up. I mean, people were walking into it with fear and weakness and leaving with strength and hope.
LJ: And that was one of the things that really grabbed me too is as you do with events like these you ask everybody if it’s ok to take their photo.
DWK: Mmm hmm.
LJ: And there was a handful of people who weren’t comfortable with their photo being taken, which is fine. But I remember there was someone that came up to me, they came up to me towards the end of the day and they said, “Look, I said when I came here that I didn’t want anybody to know. I didn’t want my photo taken. I didn’t want to be identified as having this. But through this day I’ve realized that this is a legitimate condition, this is a legitimate disorder, and I’m prepared to stand up and be counted.”
DWK: It is… I mean, sometimes you’re looked down at when you say, “I have a sleep disorder.” You’re considered lazy…
LJ: Crazy..
DWK: Crazy.. you know, “Just exercise more.” “Drink some coffee.” I’ve heard it all. You know, and after a while you just get tired of hearing that so you just try to escape away and… make yourself invisible. And that was a big part of this.
Another comment we got back on our feedback was, “I’m a very shy person and I’m afraid of meeting new people.” And this person walked away with many new friends.
LJ: Yeah… and it’s just… I mean, this is the first Conference. So presumably things can only get better.
DWK: Oh, absolutely. What drove us to do this is to bring people together. Send them back home knowing that they can spread awareness, raise donations, and help this cause as a whole.
LJ: And have you had a chance to go through all the receipts, all the dockets, get all the bills in from the hotel? Do you know what kind of donation this event is going to help contribute to Hypersomnia?
DWK: Yes! Everything… even the very little that was left over from our ticket sales, our raffle sales, our t-shirts, and even some personal donations that were made on the side as well. We were just over $5000.
LJ: WOW.
DWK: Yes. We were thrilled, absolutely thrilled. Especially when maybe about a month ago we were looking at a $95-98 profit. Um, blown away.
LJ: Am I understanding that right? That was nearly all profit from ticket sales, raffle sales, personal donations..
DWK: Yes, I’m going to say that 99% of our donations were out of the generosity and willingness of that day- which was all raffles and t-shirts.
LJ: That’s incredible.
DWK: Yes, it was.
LJ: I’m sure these people listening in are thinking tell me, when is the next Conference!
DWK: I have gotten that question a lot. They want dates already. Uh what I can say is save up. We can take a look at it. There’s a lot of things that need to be taken into consideration. Location. Uh, we would love the Hypersomnia Foundation to start looking at something as well.
LJ: Somewhere warmer. I mean, Atlanta’s not …
DWK: Listen, I would love to take a cruise, myself. But as far as ideas go, it is nice to be this close to Emory when having a conference. We have great speakers here. People love the area and the location as well. We’re not 100% sure but definitely stay tuned.
LJ: Alright. I think that’s one of the really important things in planning the next one is keeping it accessible.
DWK: That was a big part in picking the location that we did, which was almost connected to the airport through SkyTrain. People didn’t have to rent cars or get a taxi, they pretty much had to walk through the lobby to the airport and get right back directly to the hotel. That was huge. And again, also being within a half hour of Emory.
LJ: Cuz I guess that’s the thing, if we were to go and choose another location when we’ve still got most of the major research coming out of Emory then we have to somehow factor in the cost of supplying the speakers from Atlanta to that location, putting them up in a hotel, and…
DWK: Exactly. And every little thing just adds cost onto the ticket prices. So that is something we have to look at if we want to get people to attend, this might have to be the place that we look at for the next one.
LJ: Well it sounds like there’s a lot of thinking, a lot of planning… I’m going to guess it’s probably going to be what 2015 before the next sort of conference of this magnitude at the earliest?
DWK: Definitely, I think so. It needs time. You know, I think we did a great job for throwing together a Conference in 2-3 months and to have the results that we had. But listen, it’s tiring. It took a lot of I would like a little bit more time to plan and I think anybody would want that time.
LJ: I think it was um, Catherine Rye who said, “Having a conference is a bit like having a baby.”
{Giggles}
DWK: Maybe having a baby, planning a wedding, and buying a house at the same time.
LJ: Yeah, yeah. {Giggles} So I mean, we’ve talked about a wide range of topics. Is there anything we haven’t talked about in relation to the Conference that you wanted to add?
DWK: I’m-I’m just grateful that everybody made the effort to come and be a part of it. And I think we really raised a lot of excitement for the next one. And I look forward to it, myself.
LJ: Well thank you so much for making time today to share all of that insight into the 2014 Hypersomnia Conference. Thank you to you the listener, for tuning in to our podcast. The first ever podcast today! And I’ve got some really exciting news about future podcasts. We’ve got speakers lined up including Dr. David Rye, talking about the Multiple Sleep Latency Test. I’ve been talking to someone who has a background in exercise who is going to be sharing how exercise can help Idiopathic Hypersomnia- and it is not what you think. And many, many, many other great topics to come so stay tuned, subscribe to the podcast and we’ll see you soon with the next one.
DWK: Thank you, Lloyd.
[Outro: That’s it for this time. Tune in again for the latest and greatest on Hypersomnia. In the meantime, make sure you check out the www.livingwithhypersomnia.com website. Thank you.]

This transcription is thanks to a volunteer who is living with hypersomnia themselves!

Hypersomnia Music

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by on March 20, 2014 at 3:39 am

It’s not often that music is written about Hypersomnia or sleeping too much but a little while ago I saw this music video and I just had to share it with you. The title of the song is ‘Hypersomnia’ and the lyrics speak for themselves. Check it out…

This song was written by APPLEPOLISH who are an indie/electronic/pop-rock duo comprised of brothers Johan and Richard Palacio. For more details on these musicians please visit their Facebook Page:
https://www.facebook.com/Applepolish

Do you have a Hypersomnia song that speaks to you? Share a link to it or the name/artist of the song in the comments of this post.

This video was shared with permission.

in Just For Fun, Videos

2014 Hypersomnia Conference – RESOUNDING SUCCESS!

6
by on March 12, 2014 at 4:56 am

The 2014 Hypersomnia Conference held in Atlanta, Georgia, USA was a resounding success. The event sold out and was attended by 159 delegates with a large waiting list of those who missed out. The speakers including Dr. Rye, Dr. Trotti and Dr Jenkins were well received and the cutting edge research they shared was eye opening to patients and supporters alike. The crowd was primarily made up of patients and their supporters although we were lucky to have Pharmaceutical Representatives, Reporters and Researchers in attendance too.

HUGE THANKS must go to both Diana and Jenn who were responsible for organizing the conference. The feedback sheets are testament to the gratitude and satisfaction of those in attendance. But thanks must also go to the volunteers, the businesses who backed the conference with free or discounted services, and the attendees for showing their support for this first ever event. Before the conference had even finished there was already a buzz starting about the next Hypersomnia Conference to come!

I could go on and on about how well this event went, and the difference that proper information can have in informing future treatment. But pictures speak louder than words! So for an insight into the conference please check out the Animoto video that was put together by Jenn:
» Watch the 2014 Hypersomnia Conference Video

Bookmark the website and check it regularly for more information about future Hypersomnia events!

Other Media Coverage:

Share Your Hypersomnia Story… and it might end up in the book!

2
by on March 8, 2014 at 11:02 pm

Living with Hypersomnia is a unique journey for each and every one of us. While our stories share many common themes they also share their differences.

The Hypersomnia Story Project is dedicated to collecting the stories of people living with Hypersomnia. These stories will be edited, compiled into a book and used to raise awareness for this debilitating disorder. Please read the instructions below and contribute your story.

The questions for you to answer in a few paragraphs are:

  1. What is your full name, age and state/country?
  2. What does ‘hypersomnia’ mean to you?
  3. How long did it take to receive a diagnosis? And how old were you when you were diagnosed?
  4. Hypersomnia impacts our day to day life. Which three important things are currently most affecting your day to day life?
  5. What support/medicine/effort would make the greatest difference to your life if you were to have it today?
  6. Other comments…

We also require a high quality image of you that you are happy for us to use alongside your story. If you are taking a photo on your phone this means sending the original sized file (normally over 1MB).

Please email your story to [email protected]

Just be patient! It’s like to be months rather than weeks before all these stories are edited and ready for publication. If you can still read this page then that means we are still accepting new stories :)

Living With Hypersomnia in Maine, USA

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by on February 16, 2014 at 4:48 pm

This photo comes from Kim in Maine, USA:

kim-living-with-hypersomnia

Do you want to submit your photo too and receive a Living With Hypersomnia wristband for your efforts? Check out this link for what you need to do to be involved.

Or click this link to see all the submissions so far:
» Photo submissions from those Living With Hypersomnia

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