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Multiple Sleep Latency Test (MSLT) Podcast with Dr. David Rye

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by on April 21, 2014 at 2:48 am

lwh-thumbnailThe second episode of the Living With Hypersomnia Podcast Show is now available! Recorded on March 11, 2014 it stars Dr. David Rye, Professor of Neurology at Emory University.

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:
https://s3.amazonaws.com/LWH-Podcasts/002+Mean+Sleep+Latency+Test.m4a

Transcript of the Podcast
LJ = Lloyd
DR = Dr. David Rye

[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 Johnson.]

Lloyd: Hello and welcome to another podcast! I’ve got a very special guest here with me today: Dr. David Rye from the Emory University Sleep Center. Some of you might be familiar with Dr. Rye because his name was one of the names on the paper about Flumazenil for treating Idiopathic Hypersomnia.

He has a lot of experience with sleep disorders and he’s going to be part of the show with us today. Today I’m going to be keeping questions specific to the Mean Sleep Latency Test (MSLT). Welcome Dr. Rye!

Dr. Rye: Great to be here.

LJ: So… for the people tuning in who are sort of early in the diagnosis, don’t necessarily know much about Hypersomnia or the jargon that goes with it, how would you explain in layman’s terms what a Mean Sleep Latency Test is?

DR: Well it’s actually called the Multiple Sleep Latency Test.

LJ: Multiple?

DR: Because you have multiple chances to fall asleep during the test. You derive a mean sleep latency- meaning an average of how short or long it takes you to fall asleep over opportunities to nap that you’re given during the day.

LJ: And when you say opportunities to nap, this is in a Sleep Lab, right?

DR: It’s in a Sleep Lab. It’s usually done typically… the vast majority of times it’s done following an overnight sleep study.

Um, and that’s primarily done for 2 reasons:

1) To establish that there’s no primary sleep disorder that might account for the patient’s daytime sleepiness

LJ: So that would be things like Sleep Apnea…

DR: Sleep Apnea is probably the primary thing that most physicians are looking for. Also you know, adequate amounts of sleep…

LJ: And what’s an adequate amount?

DR: Well that’s a really good question; I think it differs for everybody. But the…… standard is to document that the patient has slept at least 360 minutes. So 360 minutes of sleep time, not 360 minutes of recording time. It will take you some time to fall asleep. You may wake up for 5 minutes to use the bathroom, rollover, get adjusted in a strange environment… So it really requires that you have 360 minutes of total sleep time.

Many of the studies- in fact, there was a study that just came out in Europe that did a survey with the Multiple Sleep Latency Test, in many instances the test wasn’t performed properly sometimes because this 360 minutes wasn’t achieved yet the patient was studied the next day on the Multiple Sleep Latency Test and the latencies were recorded, used, and interpreted.

LJ: I could see where if people only slept 1 or 2 hours, of course it’s going to be easy to nap the next day.

DR: As little as 4-5 hours. I saw a test recently from a patient that I saw in the last several days who slept for 306 minutes, which is just a little bit over 5 hours. Aaaand the next day his mean sleep latency for 4 naps; he had 4 (some labs do 4 naps, some do 5) was 5 minutes- just over 5 minutes, which is considered sleepy and I’m sure we’ll talk about that.

LJ: And just-just walk the listener through that when you say the Mean Sleep Latency. They add up how long it takes for each nap, is that right?

DR: Right. So you have scalp electrodes on during the nap opportunities so that physicians can properly see that you are actually entering an electric or graphic uh, pattern that’s defined as Stage 1 Sleep, Stage 2 Sleep, or Stage 3 Sleep, or even Dream Sleep. The Latency from lights off, the time from lights off to the first 30 second epic or duration where you can say that 30 seconds, the majority of it is sleep, is considered sleep onset. One calculates the difference between lights off and sleep onset, and whenever that is scored- it could be 4 minutes later, it could be 10 minutes later- and then you add the 4 or 5 naps together, divide by 4 or 5 and come up with a Mean.

LJ: And is there like, a cutoff time in terms of diagnosing different disorders? What are they looking for with that mean time?

DR: Well the first thing… let’s talk about… how the test is run. A 20 minute opportunity to fall asleep: So once you do fall asleep, you’re given 15 minutes of sleep. So let’s say, you fall asleep at minute 2. You’re then allowed 15 more minutes for the test. So the test is gonna last 2 + 15 so…

Both: 17 minutes.

DR: Alternatively, you could fall asleep at minute 19… and then given 15 minutes to sleep.

LJ: So 34 minutes?

DR: 34 minutes. So… you know, you’re going to accrue depending on when you fall asleep. Different amounts of sleep throughout the test throughout the day which can alter the test results but that in and of itself won’t alter themselves too much. So traditionally in the criteria for the International Classification of Sleep Disorders III, which just came out in the last couple weeks. The cutoff for considering being sleepy or sleepier than controls is falling asleep on average in less than 8 minutes over those opportunities.

LJ: Ok.

DR: Then the next designation or criteria that’s looked at is whether or not you entered into dream sleep during those… or how many naps you fell into dream sleep.

LJ: So do you mean like REM?

DR: Yeah like, REM Stage of Sleep, which is a very specific physiological stage of sleep; Very easy to identify. Pretty good reliability between different observers, scorers, and laboratories. And um, if you do that more than twice or more that’s basically considered Narcolepsy.

LJ: Ok, so let me get this straight. If you fall asleep in under 8 minutes as an average in the 4 or 5 naps, and at least 2 of the naps have REM, or dream sleep, the doctor would look at that report- and assuming there were no primary sleep disorders on the overnight test that would be labelling you Narcolepsy?

DR: Correct. If it was one nap of dream sleep, you wouldn’t be Narcoleptic. You would be Idiopathic Hypersomnia or if it was zero naps it would be Idiopathic Hypersomnia.

LJ: And what happens to those people who go there and do the naps and don’t fall under the 8 minutes? Are they send away and told they’re fine or?

DR: Pretty much- and that’s what we know through some research done by Isabelle Arnold’s group…

LJ: Was that in France?

DR: In France, yes. And we would agree in our own experience; published and unpublished, that there are a set of people who experience Hypersomnia who… for whatever reason they either tested or performance anxiety or whatever.. 30-40% of them are NOT going to fall asleep in less than 8 minutes. Nonetheless, the do experience Hypersomnia. This gets to be a little bit problematic. As you said, this kind of disenfranchises them a little bit because they won’t be diagnosed with anything.

LJ: Yeah.

DR: And then physicians are wondering why is the complaint not matching up with our test result? And they get you know, a little confused. So I think it gets back to what I’ve discussed in other forums- I mean, what’s in a name? Hypersomnia means to sleep too much so…

LJ: Yeah.

DR: And if we’re measuring sleepiness in terms of a Latency to fall asleep, that’s a sort of Kodak moment and you’ve got 4-5 Kodak moments during the day. And you’re not really measuring total sleep time over the 24 hour clock.

LJ: What is the longest like, well in a standard sleep lab if someone was put to bed first and they were woken up last; what is the maximum amount of time that they could sleep?

DR: Um so probably 9:30 pm, or 21:30 to 6:30 in the morning.

LJ: So that’s like 9 hours.

DR: 9 hours, and basically you’d have to be asleep that whole time, fall asleep instantly in order to get that 9 hours. It brings up some practical issues that came out in that survey in Europe and we deal with it also. From a practical standpoint the nightshifts, and what the technicians are paid, what shifts they work. There’s a lot of juggling that has to go on to sort of accommodate a patient who goes to bed later and sleeps until 11:30 and then they sleep till 10:30 in the morning.

LJ: Well for anyone with Delayed Sleep Phase Disorder that would be a nightmare!

DR: It becomes more problematic because the physician will rely less on the history because you’re trying to document a diagnosis. This is why actigraphy is becoming more popular because then we can look at patients over multiple nights over many weeks um, to kinda gauge and get an estimate on how much sleep time they do have…

LJ: Yes.

DR: Averaged out over many more nights or weeks, for example to mean we get a little bit more accurate gauge.

LJ: It is- It is a bit like preparing for a race when you’re at school. There’s a big opportunity for performance anxiety.

DR: Mmm hmm.

LJ: Cuz a lot of people with Hypersomnia they’re not readily believed by a lot of people so that night in the sleep lab- it’s not cheap. The insurance companies are not going to do a lot of these in a lot of cases.

DR: Mmm hmm, correct.

LJ: Um, and if that person doesn’t sleep very well that’s going to invalidate their history, you know, what they’re describing.

DR: Correct. There are instances in our laboratory, and I’m not sure how many other laboratories do it, but if we don’t get- document- 360 minutes of total sleep time, we don’t usually go through with the Multiple Sleep Latencies the next day.

LJ: Ok.

DR: Patient’s will be sent home and we will consider whether we should do it again, whether we should do actigraphy, whether we should assess them at a different time, in a different environment…

LJ: So… so say somebody’s listening to this and they’ve got their Multiple Sleep Latency Test coming up. What’s the best way for them to approach it? Is there like a frame of mind they can approach it in or? Things they can do?

DR: [Sighs] Well… I haven’t really been asked that question or thought about it too much really. {Chuckles} It’s nice to know and to try to keep their schedule regular and to document that. Some laboratories ask for patients to keep a diary before they come in. And the other issue would be… some laboratories ask for… I was just looking at some reports of patients coming to see us in consultation and they had actigraphy for the week or 2 prior to the night they actually come in for their sleep test. So they were anticipating the Multiple Sleep Latency Test…

LJ: And by actigraphy, you mean… wearing those watches…

DR: It’s a little wrist watch that keeps track of motion. So this is essentially using motion as a surrogate for sleep or lack of motion as a surrogate for sleep. So it’s really looking more at rest or activity and looking to see if it’s a good surrogate for being awake. But there are some problems with that as well because many people who have lassitude or languid or may be depressed may be very still or not move a lot…

LJ: Yes.

DR: A couch potato, so to speak, and if that’s recorded, it could be as an interpretation of sleep when the person could be wide awake…

LJ: Watching TV…

DR: Or staring at the ceiling.

LJ: Yeah..

DR: So you know there are some difficulties that can be incurred by relying on actigraphy- and this is well recognized and-and because in part… the patients you’re doing the test on may be presumed to be more likely to be depressed and suffer from Hypersomnia from depression…

LJ: Yeah.

DR: It becomes a bit of a vicious circle. Uh… and you know, the best is objective data.

LJ: Yeah and I mean in speaking about that, a lot of the sleep labs seem to differ in the guidelines about medication.

DR: Yeah… using medication, not using medication…

LJ: Right. Do you come of anti-depressants?

DR: Are you on medicines that are going to interfere with the suppress dream sleep occurring? Um, and therefore like you said, are going to interfere with potentially observing Narcolepsy. Or… what’s an adequate time to be off the medications? Cuz if you’re being suppressed from having dream sleep from these medications how long does that suppression last? AND another phenomenon is called REM Sleep Rebound where you take your foot off the spring from suppressing it and then all the sudden it starts occurring. Is that a day later after stopping the medicines? Two days later? Five days later? These have not been well established.

LJ: Some of the places seem to say 2 weeks before. Is there any consistency with that?

DR: Well, I think that most people say 5 half-lives… 4-5 half-lives of the medication that is responsible to make sure it’s completely out of the system. But some of these medications can persist for quite some time and I don’t think there’s an agreement on this at all. In our laboratory, in my own practice generally speaking, when patients are coming to me, I don’t see them in a virgin unmedicated state sometimes. If I’m going to order that test they’re usually going to complain of sleepiness. I don’t feel it a prerequisite, necessarily. They have a complaint while on the medicine and in most incidences, I just want to document the complaint.

LJ: And you’re ordering the MSLT because….

DR: Well one is- well, there’s 2 reasons. One is- well there’s 3 reasons that I would order it. One is to objectify the complaint; That’s A because….

LJ: So if someone does fall asleep during the day, they are sleepy…

DR: They are sleepy.

LJ: Ok.

DR: At least on some level and we can have a discussion about, {Giggles} “Is 8 minutes the correct level?” But as a physician involved with the ongoing care of these patients I have to think about what’s coming. What’s coming down the line is letters from Disability, potential Family and Medical Leave Paperwork, and I have to be able to write a letter and speak sort of as objectively as I can with as much voracity as I can about well do I have evidence that objectively says this person is sleepy.

LJ: So that’s the first reason.

DR: The other reason is… and it would be very similar to that. Maybe the patient has a Commercial Driver’s License. Ya know, they actually have a job that’s highly dependent…

LJ: They drive a truck or…

DR: They drive a truck or they drive a bus, they’re a school bus driver. I need to identify whether this person is a potential health risk- not so much to themselves but to the people that they’re responsible for caring for or driving them. So that might be a second reason. Um… and the third reason would be to establish a potential diagnosis relevant to getting medications covered through an insurance carrier. Um…

LJ: So what sort of medications could you access if your MSLT was a certain way that you couldn’t necessarily otherwise?

DR: This is the reason why so many physicians reorder tests um, to try and get a diagnosis of Narcolepsy. Because of the medications that are FDA approved to treat Narcolepsy.

LJ: So Sodium Oxybate…. Xyrem…

DR: Xyrem, Sodium Oxybate; Xylem being the brand name and Sodium Oxybate being the generic name. Also many of the psychstimulants… Provigil/Modafinil, Nuvigil/Armodafinil… um, and many of the insurance carriers especially in this economic environment healthcare reform in the United States, many of the companies are simply defaulting to: “We will cover the medicines that the FDA approves for what they are approved for, ergo you have to have that diagnosis.”

So this leads to many people ordering Multiple Sleep Latency Tests and eventually to… and we see this frequently in seeing patients, because we’re a tertiary referral center so we’re used to seeing people who are already carrying a diagnosis, who are not doing well, who are already on medicine, or who wanna switch providers….

LJ: Soo… so let me get this straight, there’s actually a huge incentive right now for people to diagnose sleepy people who need wakefulness medication with Narcolepsy?

DR: Correct. That’s my interpretation.

LJ: So it’s all- it’s all

DR: I’ve certainly seen physicians who have uh, sort of purposely misinterpreted Multiple Sleep Latency Tests in order to use a diagnosis of Narcolepsy SO that the patient can have access to medicines.

LJ: So they could be…

DR: I’ll give you 2 examples. Ummmmm… recent examples;

1) A person who had a Multiple Sleep Latency Test a-aand the results were in the ballpark of fell asleep in 6 minutes, no dream sleep during this, and apparently couldn’t get their medications authorized so the physician wrote a letter and said, “Well gee whiz, in my reading of the literature there’s a 30% false-negative rate for the Multiple Sleep Latency Test for Narcolepsy.”

Which that’s news to me! I don’t know where that number came from. So in other words, if I take people who have well-established Narcolepsy and I do this test; How often is it going to be abnormal?

LJ: Mmm hmm.

DR: When I’m saying well-established Narcolepsy, which I’m sure {Giggles} we’ll get into this; I’m talking about Narcolepsy WITH Cataplexy, with all the other abnormal phenomenon such as REM, Dream Sleep,

LJ: Hallucinations…

DR: Hallucinations, Cataplexy, Sleep Paralysis… And in those patients the Multiple Sleep Latency Test is highly, highly sensitive it’s like, 97% sensitive. So where someone says it’s only 70% sensitive- in other words you’re missing 30% of the patients; I have no idea. So that’s you know, one physician that interpreted it in such- I’ve had other physicians who interpreted it with only a single REM onset instead of 2 and then try to come up with some sort of reason as to why the other REM nap didn’t happen. Therefore we’re just going to call it Nn..

LJ: There was a loud noise outside the room…

DR: Yeah, whatever. This person has Narcolepsy and darn it they need their medicine.

LJ: So what would you say to someone who’s listening to this who’s done Multiple Sleep Latency Tests and their doctors labelled them as having Narcolepsy but if they look at their symptoms they don’t have a lot of the symptoms? They don’t have Cataplexy and they didn’t necessarily have all those REM periods on their MSLT?

DR: If they didn’t have the REM periods well then they’ve probably been mischaracterized and um…

LJ: Which might have been from a well-meaning doctor who

DR: Sure, sure… but if the Center for Medicare in the United States found out that was happening on a regular basis that would be considered Medicare fraud.

LJ: Yeah.

DR: [Chuckles] I mean, they’re basically misdiagnosing patients to get a medicine covered and paid for surreptitiously. It doesn’t you know, I totally agree with you. We run into this often and we get very frustrated with running out of access or trying to get access to meds for patients. What will you do?

LJ: Because… not to have to choose 1 with the MSLT, being normal is one outcome to the MSLT. What are the other outcomes?

DR: Um… Idiopathic Hypersomnia. So that would be somebody falling asleep in less than 8 minutes. Um… and either 1 REM onset or none. But not 2.

{Giggles}

DR: Or 3. And then there’s a whole ‘nother group of people where you just look at the result- I’ll give you an example. A young man we saw and you just go jeez..

I had a gentleman come in years ago and his chief complaint was swooning.

LJ: {Giggles} When ladies walk up?

DR: Yeah, when ladies walk past. He would get excited, lose strength in his legs and fall down. I mean, this guy had Cataplexy there was just NO doubt about it. Not only in terms of the history, but in terms of examining him and talking to him more.

LJ: Yeah.

DR: He drank copious amounts of caffeine. We had actually tested him in the laboratory and I remember his Mean Sleep Latency came out at about 10 minutes. But of all 5 naps, he went into a dream on all 5 naps. So according to these criteria he doesn’t have anything, right? Because he didn’t make the 8 minute cutoff so he’s not sleepy. But gee whiz, he went into a nap with dreaming at the 10 minute mark every time, showing that he has an increased REM propensity; a propensity to go into Dreaming Sleep. Boy uh… as a Clinician what am I supposed to do with that, right? I mean, clinically he has Narcolepsy with Cataplexy, there’s just no…

LJ: So…

DR: No, these cases are rare and it’s an example. There was another young man who came in with a- and we reported him in a recent paper. The results are in there- in the paper just as part of a larger study.

A young man, life long history since his teens… or earlier, of Hypersomnia. Slept all the time; sleep inertia, sleep drunkenness, slept 12 or 13 hours a day, and so we put him in our laboratory and getting back to practical issues.. We didn’t accommodate this long sleep. We got his 7 or 7 ½ hours. He then had a Multiple Sleep Latency Test and the result, if I recall, was about 10 minutes. He went into it and had Dream Sleep on 3 naps. Ummmmm… so we’re like…

LJ: So that’s not beneath the cutoff. That’s more naps with REM…

DR: More naps than what you would expect… but he would kind of fit the label.

LJ: So how…

DR: But listen to the end of the story. So then being frustrated by the fact that we had started treating him and he really wasn’t doing much better, the family took him to another sleep center where they let him sleep his typical night. I don’t know, I think it was 11, 11 ½ hours of sleep. Then they did sort of a modified Multiple Sleep Latency Test… modified because it started later in the day. They kinda got the naps closer to one another because you know; it’s 12:00 pm by the time you’re starting. He only did 4 naps and I believe it was… 14.5 minutes for his Latency, which is better than 10 AND he only went into a dream once. So clearly you can see the effect there of extending his sleep. It gave you a totally different result so…

LJ: Yeah..

DR: Both of which still didn’t buy him a diagnosis. Big picture if one looks through the history of the Multiple Sleep Latency Test is it was essentially defined… It was refined in order to find genuine people who have Narcolepsy with Cataplexy. Narcolepsy with clear cut symptoms of disordered Dream Sleep. That’s great if you have Narcolepsy with Cataplexy. But it essentially disenfranchises a whole group of other people that have complaints of excessive sleepiness or more importantly, Hypersomnia that is just not going to be captured very accurately by this test. And the field knows this. There have been some people who have published some papers recently, including ourselves.

A) Showing that the Multiple Sleep Latency Test in those other instances is highly variable and results in a diagnosis changing 50% of the time.

LJ: Hang on, hang on, hang on… half of the people who do this twice will come up with a different label?

DR: If they don’t have genuine Narcolepsy with Cataplexy. So this has been done with those patients.

LJ: Ok.

DR: And in those patents separated by 2 weeks, nothing else changing, the Kappa Coefficient- which is the coefficient of how alike 2 tests of the same person are- was very high, above 95%. So if you were sleepy and had 2 REM onsets the first time, the next time they did the test 2 weeks later the test results were 97% accurate.

http://en.wikipedia.org/wiki/Cohen’s_kappa

So that’s known for Narcolepsy with Cataplexy. The same data, until we published a more recent paper, was unknown to the other diagnostic categories. So in that paper we reported 36 people that did not have genuine Narcolepsy with the REM sleep disorder.

LJ: Mmm hmm.

DR: Presumed Hypocretin deficient and we looked at the other Primary Hypersomnias: Narcolepsy without Cataplexy, Idiopathic Hypersomnia. In those instances the diagnosis changed 50% of the time. The result of the Sleep Latency Test changed 50% of the time. So this test, in that clinical situation is highly invalid.

LJ: So but I mean- you’re using a lot of big words so just so sort of tie in; simplify it again. It sounds like it’s got a high level of accuracy for people with Narcolepsy with Cataplexy.

DR: Sensitivity AND accuracy, which is what we would call specificity.

LJ: But then for everyone else, it’s a bit hit or miss?

DR: Yeah, that’s fair enough to say. Sure.

LJ: So if there are people out there that go for an MSLT um, can they get told that they have Narcolepsy with Cataplexy. They can probably put a fair amount of faith in their diagnosis.

DR: Well… with Cataplexy it’s basically a history- with Cataplexy.

LJ: Ok.

DR: Very few people manifest it overtly. So if we think about it…. Diseases are defined by signs and symptoms. The symptom of Narcolepsy is an attack of sleep. There may also be other symptoms of Cataplexy, the sudden loss of muscle tone… comes with positive emotion. Sleep Paralysis. Even though many people in the normal population have Sleep Paralysis and these hallucinations when you go to sleep or when you’re waking up. So those are the symptoms.

In terms of the signs, which are overt … Cataplexy is certainly one. If anyone ever captures it, sees it, records it, which is not common. I have not seen it a lot over my career… maybe 30-35 times total. A couple times a year I’ll usually see it, and it’s unambiguous. So that’s a sign.

One could say that going into a dream during a daytime nap is a sign- an objective sign. So… how good is that objective sign? It’s certainly accurate or-or valid if you test the person with true Narcolepsy again you will see that sign on the Multiple Sleep Latency Test.

The difficulty arises when the person doesn’t have clear-cut Cataplexy, when they don’t have any features of REM sleep to control, and they go into a dream twice or more…

LJ: Yeah.

DR: during their daytime testing. Is that reeeally specific for Narcolepsy? The answer for that group is… probably not. So we would agree with Isabelle, and she’s in Paris, that about 30-40% have Narcolepsy and Hypersomnia. So should they be thought as as a true Narcolepsy and presumably expected to develop over time. Or are they better thought-of and grouped with people with Hypersomnia? Um…

LJ: That’s a good question!

DR: Right- and everybody struggles with this so if we look at the spinal fluids, which this had recently happened with Dr. Minot’s group… If they do spinal fluid analysis of Hypocretin and those as such just to find based on the Multiple Sleep Latency Test with the 2 sleep onset REM sleeps

LJ: Yup.

DR: Only 25%- at most, have the actual Hypocretin Deficiency. So what do you do about 75-80% of them that don’t?

LJ: So you’re saying that 75% of people both who fall asleep on the Multiple Sleep Latency Test in under 8 minutes and have REM in 2 or more naps don’t have the Hypocretin Deficiency..

DR: Correct. That’s not my work, that’s the work of the people most interested in Narcolepsy-

LJ: But they still would have Cataplexy and be reporting, not necessarily showing in clinic, but reporting that they’re falling down, weakness…

DR: Well, they may not report anything! And as I said, Isabelle Arnold is reporting, and we agree with her, that about half those patients say they have Hypersomnia…

LJ: Ok.

DR: But remember we’re not measuring Hypersomnia with the Multiple Sleep Latency Test. We’re just measuring momentary sleepiness on 5 occasions. We’re not reporting in the test, “Oh gee, this person slept for 10.3 hours or over 20 hours in the sleep laboratory,” or whatever you might want to…

LJ: So-so given that the test can’t be duplicated, the test is pretty unreliable then?

DR: Correct.

LJ: And… given that it’s so unreliable, what is a better test that someone will work out if they have Hypersomnia?

DR: [Sighs] well, right… I think we don’t know that yet. There certainly is no consensus. And it’s something that several folks are looking at… There’s a paper out from Italian groups and they’re saying, “well gee, maybe we should study people for 48 hours and just let them ad lib sleep and see what we get.” The problem there-

LJ: So it sounds like in a couple decades the Multiple Sleep Latency Test will have dropped away when people are suspected of having Hypersomnia.

DR: Right, and you could think of.. well you have to balance the practicality of the test, There’s a cost benefit ratio. Just like any business, right? And is it practical? What will the cost of recording somebody continuously for 48 hours? Or…. The way things seem to be headed is, “well gee; it would be nice to have a Biomarker.”

LJ: Yeah.

DR: Some biological marker in the spinal fluid that allows you to correctly diagnose somebody quickly. That doesn’t incur the cost of being in the laboratory with the costs of the overhead lights and the technician.

LJ: So like the Narcopletics have with Hypocretin deficiency…

DR: Right! Hypocretin deficiency in the Narcoleptics and what we’re seeing now with the majority of patients with Hypersomnia is the ability to potentiate the Gamma Butyric Acid A receptor in an experimental dish.

GABAA receptor

DR: So that’s another option and I think something that we have to keep in mind is perhaps other behavioral metrics to fully capture the main complaints of Hypersomnia that nobody’s really thinking about or trying to get at. Doing a little bit with that so for example, what is sleep inertia? What is sleep drunkenness and how do we measure it?

LJ: I know how it feels..

DR: Right… and this seems to be a very common complaint with patients with Hypersomnia not often described by Narcoleptics- true Narcoleptics that are Hypocretin deficient. Their naps are short, usually refreshing. Ok, they’re not deep sleepers. They’re more often kinda restless sleepers as opposed to the Hypersomnic subject who is more often a deep sleeper, efficient sleeper. Who’s difficult to arouse, who can be so difficult to arouse that they are almost frankly encephalopathic.

So can we come up with other tools other than a history can be very good at times, that allows us to measure or capture it and let’s us know how that …. on a test.

LJ: But until the biomarker for Hypersomnia, for example, becomes available…

DR: More available… because I think it’s at least available in one location.

LJ: Sure… so until that time doctors are going to keep ordering this…

DR: Multiple Sleep Latency Test.. and they’re not disincentivized to do it, right? They’re incentivized to some extent because they want to treat their patients and get the drugs approved for the patients. It doesn’t hurt that they can bill at nearly $3,000 U.S. dollars for the test. So there’s not a lot of incentive to change that behavior. {Flabbergasted chuckle}

LJ: So that’s it… so you got Hypersomnia and people with Hypersomnia can sleep pretty damn well- and the problems come during the day. But.. like I mean, you would get some of that with the sleep study overnight when they would come to wake you up at whatever time in the morning but does any of that get recorded?

DR: Some laboratories write some of these things. Patients are asked, you know, “you did a test in our lab…” And then we ask the next morning. We do the test in our lab. Patients are asked to record the test the next morning. How awake do you feel? Some judgment on how you rested. Do you feel like you slept last night? How do you feel right now upon waking? We’re also starting to institute behavioral testing during the Multiple Sleep Latency Test: essentially doing some cognitive testing to see how well your cognition is working around your nap opportunities. And also doing psychomotor vigilance tests around your nap testing. Which is a performance test measuring the reaction time derivative to give us

Are you awake and alert?

A little more of an idea of how metrics that are highly correlated with sleepiness. Try to capture sort of another domain or construct, which is vigilance, cognition, attention. That may be part of the complaint of the Hypersomnic, as opposed to sleepness, per say, which is what the Multiple Sleep Latency Test is measuring.

LJ: So it sounds like there is work being done on measuring sleep inertia or sleep drunkenness?

DR: Starting to.. There’s been a few papers that have come out on other laboratories doing similar approaches but I think we’re far away from seeing it incorporated into routine practice. It’s the routine practice that we’re at, at the moment, but we’re trying to do it I guess, on a bit of a research angle- uh, but thinking out… Where is this headed farther out, years from now?

LJ: Yeah..

DR: Um.. in anticipation of that. It’s gonna take a lot of heavy lifting o get to that point because people want data.. and so it appears that the gold standard is still going to be the Multiple Sleep Latency Test {flabbergasted chuckle}, even with all the caveats and problems with it and the problems we’ve had interpreting it.

LJ: What sort of data would be needed to-to change that?

DR: Well some of it’s coming out- but you don’t… Well I think some of it in general uh, it’s easy enough to come out and sort of trash things {chuckles} or show why they’re not good. But at the same time we don’t just want Debbie Downers or Negative Nancy’s around. Essentially want to provide some alternative when in the process of tearing something down. You provide some options for alternative approaches. So I think those are important to develop at the same time.

Um, I think if you get most sleep physicians off the record they’ll probably agree with most of what I say. {Chuckles} But nonetheless, they still rely heavily on this test…

LJ: Well they’re trapped…

DR: Yeah, we’re trapped. Until you have an alternative that’s more widely available and cost effective- and it’s not going to take a huge leap to find something that’s cheaper- or that’s more valid and reliable. But somebody’s gotta do it.

LJ: Yeah.

DR: Um…. And we have thousands of people studied, more than thousands, with the Multiple Sleep Latency Test so we’re going to need thousands of people studied- you know, normals and controls and different disorders with some alternative metrics; biomarker or behavioral metric.

LJ: Because I guess like, it’s a huge expense to go through these tests all the time. There are some people that love the opportunity to nap all day but most people hate being woken up, at least the ones that I’ve heard from. They’re being woken up 5 or 6 times in a day just so…

DR: Yeah, if you’re a Hypersomnic. {Chuckles} We get complaints a lot that some people are very excited about the opportunity {laughs} to be able to sleep fairly freely. But another uh, another standard as you know, between the testing protocol is that between the naps you have to stay awake. Depending on how good or bad the technical staff is at the lab- some are very very vigilant with the video camera and every time someone is drifting off they’re in there screaming at ya or prodding you to wake up. So you only get to nap, if you think about it, you’re only going to get 15 minutes times 5, which is 75 minutes of sleep.

LJ: {Giggles}

DR: Uh…. During those nap opportunities if they’re done properly. So that is going to partly depend, I imagine, on how much sleep you got the night before… If you only got 6 1/2-7 hours, which is what most people get in a sleep lab setting then you’re going to have… 400 minutes plus 75… so maybe a little over 8 hours total in that 20 hour period.

LJ: Which is nowhere near…

DR: Which is not enough for most people with Hypersomnia. So… lotta things. Lot of challenges. We can certainly do better- we want to do better. We wanna come up with accurate diagnoses. And statistically get patients the best treatment. I guess the other issue is the nay-sayers to much of this or the minimalists to much of this- they don’t want to do a Multiple Sleep Latency Test because they say, “Jeez, I’m going to treat them the same way whether we do the test or not anyway so why do we eve care?

LJ: Yeah.

DR: That’s the other…

LJ: That was my first doctor. You’ve got no signs of Narcolepsy…

DR: Right, so why do the test? I’m just going to give you stimulants. Then he gave you Modafnil, or Adderall… Vivanse, whatever. You’re not telling me you need the test, you’re not telling me you have Cataplexy. You don’t have sleep paralysis; you’re not hallucinating so you’re not Narcolepsy so they might just do a night time test. Make sure that you don’t have Sleep Apnea.. or in many instances they find that you do have a little bit and give you a C-PAP mask and see how you do. See if your sleepiness gets better. If it doesn’t, you end up on these stimulant drugs… and it’s kinda like… we’re really not concerned with what we’re going to label you.

LJ: So… throughout this conversation you’ve talked about the different areas where there’s room for improvement, shall we say. But to end it on a positive note, contribute some data about their experience with the MSLT and how that could lead to a measure of how effective they are.

DR: Yup.

LJ: For specifically people whose main complaint is Hypersomnia.

DR: Specifically in those people who have Hypersomnia but we don’t want to cherry pick it. I think that just getting an idea in a group larger than 36 like we reported in terms of repeat testing, how good the test/retest reliability is getting some concrete- if patients have a record of the medicines they were taking at the time. That would also be beneficial- some ambiguities about how medications affect it. Which that’s going to be tough {chuckles} because in a lot of these cases from looking through these records medication status hasn’t been properly designated into the report or the interpretation of the study. We routinely put it into our reports. And that would be very important. I think another information that is very important is just…. Some idea of the unmet clinical need; The cost burden to patients. Or we can put a cost to how many MSLTs and sleep studies you’ve had {chuckles}in such a survey, which sort of speaks for itself is the cost associated with the ignorance of the test. And the frustration with getting a diagnosis. I think are critical, but again, that’s the paring down of the Multiple Sleep Latency Test. I would anticipate also we would have to have a discussion and careful thought about other potential projects regarding ways to capture sleep inertia, sleep drunkenness and particularly ways to quantify it. Because those would be important as we would get disease-specific treatments going forward we don’t have outcomes.

The other part of this that we haven’t spoken about is the drugs approved for the FDA for Narcolepsy separate from subjective scales, the Multiple Sleep Latency Test was one of the-

LJ: Ok..

DR: the outcome variables. So we have to have an alternative outcome variable, um…

LJ: So-so if we came out with it- if there was a new treatment available for Idiopathic Hypersomnia, and it specifically worked on a symptom of sleep drunkenness, we really are going to struggle to get FDA approval if there’s no objective way to measure that sleep drunkenness.

DR: Or subjective- even a scale.

LJ: Yeah.

DR: Restless Leg Syndrome really doesn’t have, I mean the FDA always love objective, but doesn’t necessarily have to be the primary outcome variable. It can be the supportive or secondary variable. For example: Restless Leg Syndrome is a symptom.

LJ: Yeah.

DR: But there’s no sign, kicking in your sleep, Periodic Leg Movements is a sign. There’s no scale. How bad does it have to be in capturing it? If you do it twice do you get the same result? If 2 observers do it do they get the same result? And that scale was something we developed very early on, which is something that is now recognized by the FDA as the principle primary outcome variable for Restless Leg Syndrome. The secondary outcome variable interestingly was the sign. Periodic Leg Movements of sleep.

LJ: Yeah sure…

DR: They loved a sleep study to be done, which was great for the laboratory because they would make money to be doing these studies, to measure Periodic Limb Movement. Interestingly enough though, in the final approval it’s only approved for Restless Leg Syndrome. It’s not approved for Periodic Limb Movements even though they asked for that as a secondary outcome measure. Nonetheless, getting back to our analogy for our instance for Hypersomnia… YES, we need to do that. So I’ve been thinking hard about it and anybody that comes to see us can see that we have questions and um… during treatment and… it’s not in database form and we routinely do it, and we give it to patients before and after treatment. So an example… we thought, “gee whiz, what can we put a number on that might capture this? “so we said number of alarm clocks-

LJ: Yup.

DR: Not only the number of alarm clocks- physical,how many times the alarm is set, and do you have any other extraordinary means to wake yourself up? So a recent case, that used as an example the other day at our Conference was, “I use 3 alarm clocks. Two physically not next to the bed so I have to get out of bed to touch them.. each set to 10 times AND I get 3 phone calls; one from a co-worker, one from my sister, and one from my mother.” So you could say…

LJ: {Laughing unapologetically}

DR: But baseline… baseline I have 33 prompts to wake up. After treatment maybe I have 20. Well that’s a significant improvement.

LJ: Yeah. Oh man…

DR: Right? Right? Maybe it’s not enough to hold a job or function, but that’s not really the question. It’s certainly a goal… but to know that the drug had an effect. Another question we asked was how many times are you late to appointments, work or school each week? You can put a number to that.

And I would challenge the community, we’ve got a lot going on, I know that… we did that and we’re doing it and are there better ways to do something like that?

LJ: There’s only so many patients that are ever going to get themselves through one sleep center. One of the things that’s really exciting me about the community is that we have people from all over, from all over the world, at all sorts of cultures, at all sorts of points in their diagnosis…

DR: Mmm hmm.

LJ: It’s never been easier with the internet that it is today to do surveys and to collect peoples’ data.

DR: That’s certainly the case. The other thing I was thinking of, Lloyd, is the psychomotor vigilance test. There are, you know…

LJ: And for those of you who don’t know what the psychomotor vigilance test is that’s where you press a button as soon as you see a light come on. And the faster you press it, the better your reaction times are.

DR: For consistency, reaction time, and variability. There are some applications now for that so you might envision, gosh now that application device is your alarm in the morning. So now not only do you have to shut the alarm off, you actually have to do the test. That could be an outcome variable. Right?

LJ: {Laughing} You’ve got this app on your phone that goes off all the sudden and give you your PVT scores…

DR: {Laughs} Well but we gotta start thinking like that. We need an outcome variable. If we ever want to go to the FDA they’re going to do a Multiple Sleep Latency Test

And we just spent a half hour talking about how it’s probably not going to be very good at capturing what we need to capture for this population. And depending on how big the signal of improvement is, we don’t think it’s very good at capturing it unmedicated. And I might point out that it’s not a great test for Narcolepsy either. If you look at just the study sizes ok, the studies for Modafinil were studies with 4, 5,600 patients. You have to ask yourself why do you need so many? The size and the benefit is so big you don’t need as many patients.

The fact that it’s so large it’s telling you, in and of itself, the effect size, the benefit is not very big. You need more people to see the benefit.

LJ: Yeah.

DR: So it’s not great and people have shown that there are alternatives in the Multiple Sleep Latency Test, the Maintenance of Wakefulness Test, and {Chuckles} we’ll save that for another podcast. There’s not much to talk about but that might be another metric to pick up drug effects. The other thing I’ve seen spoken about a lot on the Facebook group is medications yes… medications no… if you’re still arguing that you’re sleepy while on a medication then it’s pretty hard for me to argue that it needs to be removed- AND in further support of that, when people did these tests with genuine Hypocretin-deficient Narcoleptics, they didn’t get rid of it. They’re all still on the Ritalin and Modafinil and still having REM sleeps on these tests. They barely moved the latency of sleep on these tests. They didn’t turn a bunch of people with the diagnosis of Narcolepsy into normal people with Modafinil on these tests. So if it didn’t do it there… Why should I be taking medicines away?

LJ: So… yeah…

DR: You’re still going to have a propensity to dream. My final comment is people don’t walk into clinic, I haven’t seen it in 23 years, they don’t say, “Hey doc, I got these real problems with hallucinations at 3 in the afternoon when I’m sleeping after lunch.” They don’t complain of that, right?! So why are we using a test that relies upon a complaint that I never hear of? What I do hear is, “I sleep too much” OR “I fall asleep multiple times during the day”

It has nothing to do with whether I’m dreaming or not it has to do with people who are so enamored with or in love with, is so reliant on this fascination- this utter fascination with dreaming. Which has got as much to do with the psychophysics of psychology as it does with philosophers and psychiatrists than it has to do with the reality of taking care of your patient.

LJ: Yeah… yeah… well Doctor, I thank you so much for taking all this time to talking with us on this topic.

DR: I enjoyed it Lloyd, and any other time you want to chat and just let me know. Pick another exciting topic in the area of sleep.

LJ: Thank you! So hopefully people have been listening along with this, people who develop an app for phones, maybe we’ve inspired some people to go out there and design a survey. Regardless, there’s going to be a write up about this on the website. It’s www.livingwithhypersomnia.com/mslt-podcast/. You’ll find all that information. Thank you so much for tuning in and we’ll see you soon with the next podcast.

[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!

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.

, , ,

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!

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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!

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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 :)

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