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Idiopathic Hypersomnia Myths

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

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Idiopathic Hypersomnia Myths

Idiopathic Hypersomnia Treatments

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

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Idiopathic Hypersomnia Treatments

Idiopathic Hypersomnia

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

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Idiopathic Hypersomnia

Support For Those With Hypersomnia

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

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Support For Those With Hypersomnia

About Us

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

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About Us

School Accomodations for Idiopathic Hypersomnia in the USA

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by on July 30, 2014 at 5:59 pm

For those who are hit by it, as a child or young adult, Idiopathic Hypersomnia can play absolute havoc on their education! Most children are ‘sleepy’ at times and, while awareness remains so low, there is no guarantee that educators will be understanding, compassionate, or helpful in supporting those with this disorder. Julie Flygare, a Narcolepsy advocate, has published a couple of blog posts about how to request accommodations for those receiving an education with a sleep disorder. Both posts are well worth a read!

You can check them out here:

  1. School Accommodations for Narcolepsy
  2. Narcolepsy 504 Plans for High School Students

While these tips and ideas are geared towards people with Narcolepsy, many of them will apply to those of us with hypersomnia too.

It is important to remember that each state has its’ own procedures for determining learning accommodations. Parents cannot just demand that educators make special allowances for their child without proper medical documentation. The accommodations become legally binding, so it is important to understand the procedure in your state or school district before you request them. Most districts have staff whose job it is to organize and verify special student needs. These coordinators are a great place to start since the classroom teacher has to wait on their confirmation anyway.

Do you have ideas or tips that have worked for you? Please leave a comment below with what has worked for you and maybe we can use them to create tips specific to those of us with Hypersomnia!

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Living With Hypersomnia in Spain

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by on July 5, 2014 at 11:26 pm

This photo comes from Eider in Valencia, Spain:

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

Living With Hypersomnia in France

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by on July 4, 2014 at 5:06 pm

This photo comes from Jonas in France:

jonas-living-with-idiopathic-hypersomnia

This photo comes from Cassandra in France:

cassandra-living-with-idiopathic-hypersomnia

This photo comes from Patrice in France:

patrice-france-living-with-idiopathic-hypersomnia

This photo comes from Leclerc in Hauteville, France:

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

Living With Hypersomnia in Michigan, USA

1
by on July 4, 2014 at 3:11 pm

This photo comes from Rachel in Michigan, USA:

rachel-living-with-hypersomnia

This photo comes from Caralyn in Michigan, USA:

This photo comes from Sherry in Michigan, USA:

sherry-michigan-living-with-hypersomnia

This photo comes from Karissa in Michigan, USA:

 

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

Map of Hypersomnia Patient Locations

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by on July 4, 2014 at 7:58 am

This map shows the location of people living with Hypersomnia from around the world. Using Google Maps you can scroll around the world to find an approximate location of people who are around you. Take a look, and if you can’t find yourself on the map then make sure you follow the link after the map to register yourself!

Don’t see yourself on the Map? Make sure you have filled in your details here:
https://docs.google.com/forms/d/1bNyJjDJVUGeMbhV_UEuu5v1H491c_nc1hoDDPfHH0w0/viewform

The Map is only updated every month or so. Please be patient if it takes a little while for our volunteers to get the map updated with your location :)

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The Hypersomnia Project Fundraiser Podcast (With Bailey Connor)

0
by on June 9, 2014 at 3:44 am

lwh-thumbnailThe third episode of the Living With Hypersomnia Podcast Show is now available! Recorded on June 6, 2014 it stars Bailey Connor.

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/003+The+Hypersomnia+Research+Project.m4a

Transcript of the Podcast
L = Lloyd
B = Bailey

Lloyd: Hello and welcome to yet another addition of the living with hypersomnia podcast. I’m Lloyd and I’m really excited to have joining us today Bailey Connor all the way from Denver, Colorado. Now, Bailey is a patient diagnosed with both Idiopathic Hypersomnia and, also, narcolepsy without cataplexy like a few different people. And the reason we’ve got Bailey on the show today is to talk about the hypersomnia research project. So, welcome Bailey.

Bailey: Thanks Lloydy. Good morning to you

L: Thank you. You having a good day?

B: So far so good. I’m a little sleepy but I’m pretty good.

L: Some things never change. So, for the people tuning into this who have never heard about the hypersomnia research project before, how would you describe it in broad brushstrokes?

B: It’s an effort to get Dr. Rye going in a new direction, and sort of move the research on hypersomnia forward.

L: And when you’re talking about Dr. Rye, that’s at Emory University, for those of you who are new to this show, and the hypersomnia research project itself: is it mainly fundraising? Or is it other things as well?

B: It’s mainly fundraising but I think it’s also, it’s fundraising towards a specific project, that should be said. Dr. Rye has a very well outlined project that he’s going to perform once we raise the money necessary, and I believe he’s actually started on the project, isn’t that right?

L: That’s what I’ve heard. Do you want to tell us a little bit more about the project?

B: Yeah, so, the project…the project, I just adopted an Australian accent from having talked to you Lloyd.

L: I do that to people I’m sorry.

B: So, the project itself is three phases. The motivation behind the project is that Dr. Rye’s previous research has shown that there’s a molecule in the spinal fluid of people who have hypersomnia or, many of the people who have hypersomnia, that potentiates the GABA receptor, and we’d really like to know what that molecule is. And, this project is an investigation into that molecule. So the first phase of the project is: Dr. Rye is going to test candidate molecules and these molecules seem to share characteristics with the unknown molecule. And they are called Diazepam Binding Inhibitor and Octodecaneuropeptide. Those are the two molecules that uh…

L: That’s quite a mouthful.

B: Yeah. There are many syllables for all of these scientific terms. But, um, he’s gonna test those and see how they work on the GABA receptor.

L: So let me get this straight. So basically, there’s something in the fluid in our brain which is causing us to be sleepy. Some kind of somnogen. And is this the same thing that I’ve heard talked about which is a bit like Valium or sleeping tablets.

B: The very same. Yes. I was speaking with Dr. Andy Jenkins recently about this vis a vis the project and his way of describing it, which I think really puts it well for me, is its as if you’re anesthetized. It’s as if the patients with this molecule have an outpatient anesthesia. He references Propyphol, which I think is an anesthetic they use in practice to put people under, and it’s as if we are nearly knocked out with propyphol.

L: Which I guess is that paper that Dr. Rye published back in, well, Dr. Rye and his team back in 2012 about flumazenil for hypersomnia.

B: That’s right. Same…same one.

L: So does that mean if we’re able to get a bit more clarity around what that somnogen is we might be able to get more treatments for this? Or, what does this all mean?

B: That’s my understanding. In speaking with Dr. Jenkins again, he seemed to think that it was just a window into a completely wonderful new field of science. He was really excited and it made me excited listening to him because it just made me feel like the possibilities were endless, that once we identified this molecule, which he believes that this project will do. So, can I go back to the Phase 2 and 3 of this project?

L: Yeah, I’m sorry, I cut you off. So, phase 1 is testing against those two really long sounding. What’s phase 2 and phase 3?

B: Phase 2 is an unbiased proteomics approach, and this is the one that Dr. Jenkins was really excited about, which is, they’re gonna analyze, around 1000 spinal fluid samples which they’ve collected, and they’re going to put these spinal fluid samples in a kind of crucible where it’s gonna separate the spinal fluid into all its major components. So Dr. Jenkins thinks that this is just gonna be a really revealing test into what the molecule itself is. And then the third phase of the project is they’re gonna take the results from that proteomics analyses and they’re going to see how those different components affect the GABA receptor. So, I think the main thing for me is, I’m not a scientist and I can’t tell whether these tests are going to be successful or not, because I don’t have a background in science but I do feel that, in talking with Dr. Jenkins and Dr. Rye, that they’re doing things that they certainly think will be successful. So that’s something, for me.

L: So let’s rewind a little bit. How did you come to be involved in all of this? So you’ve sort of ended up being the spokesperson. For those who haven’t seen there’s a website: www.hypersomniaresearch.org and it’s your face on the video there. How did you become involved?

B: Well, I have you to thank, in part, Lloydy. I um was diagnosed with Narcolepsy without cataplexy about 5, 6 years ago, and as time went on I felt increasingly that I was not any better for having been diagnosed, and I started to look for things online and other resources to explain to me what I was going through, and lo and behold, I ran into this smiling Australian face and from then on I think it was, I went out to see Dr. Rye and umm, got my spinal fluid tested and…

L: Oh so you’ve had your spinal fluid tested for the somnogen?

B: That’s right, yeah I have, and it came back positive so I have the same level of GABA potentiation as someone who has been anesthetized for an outpatient colonoscopy.

L: Well that kind of explains a lot, I guess.

B: It does, it really does for me. Especially because so many of the sleep experts that I saw said that I had sleep apnea, really that the mild sleep apnea that I had was what was making me so sleepy so it’s nice to hear, nice to feel that I’m not crazy.

L: So that makes sense in terms of you coming to Emory, and you getting tested, and you showing positive for the somnogen, but how did you get involved in the fundraising project?

B: Well I attended the hypersomnia conference, the living with hypersomnia conference, this year and I was intrigued at how it seemed like in the presentations Dr. Rye and Dr. Trotti and Dr Jenkins, they seemed like they just had this well of scientific energy to put into this. They had these theories and hypothesis and work they had been doing and they were just ready to go, it just seemed like they had you know this damned up scientific, sort of, energy, and they didn’t have enough money to get after it and um, I thought to myself, I’d much rather, for me, I’d much rather donate money now, and get this better, get this cured or get better treatments, I’d rather do that, than save my money for some future date and not have better treatments. So…

L: I think that’s like a big philosophical dilemma when you’ve got something like Idiopathic Hypersomnia, because you’re sort of like, well I don’t know about most people, but you get this diagnosis and you’re either working or you’re not working, and they say, well the chances are this is progressive and whatever you can do now you’ll be able to do less in 10 years time.

B: Yeah, absolutely.

L: It’s like, what, you’ve got limited amount of financial resources and what do you do? Do you conserve them to make them stretch for the best quality of life? Or do you sort of go all out, early in your diagnoses, and do everything you can to get the best quality treatment.

B: Yeah, I really hear you there, and I was lucky to have a bit of money that I wanted to, from a grand mother, that I wanted to donate that wasn’t going to bankrupt me. I think a big thing for me also is what the bang for the buck is, so it would be great if we could tell these people, the potential donors who might not have a lot of money, it would be great if we could tell them that they were going to get something for their donation. But it’s just the nature of science that that’s not possible.

L: Sure, there’s no guarantees.

B: Exactly.

L: I mean, there’s a guarantee the work will get done.

B: Right, absolutely.

L: But there’s not a guarantee that the answers will come from the first experiment.

B: Yeah, and I think, as far as odds go, Emory University is one of the top research universities in the United States and, you and I have been there, and seen their facilities and Dr. Rye is University of Chicago educated and Dr. Trotti is so impressive and Dr. Jenkins, I mean I really don’t think we could ask for a better crew going after this, or better resources.

L: And they’ve also got a track record of finding things that have turned out to be not only scientifically meaningful but also they have a meaningful difference to the treatment that we can access.

B: Yeah, I completely agree with you, I think there’s a lot of hope in the way that they approach these things.

L: So, I don’t think you’ve said it yet, but what’s the fundraising goal. You’ve talked about the three different phases – is there a fixed amount that needs to be raised?

B: Yes, there is, that amount is around $72,000.00 dollars, I, maybe you can correct me here, I’m just looking on the website, it’s $71,445.00.

L:And, since you’ve got the website open, what you’ve been fundraising for a week and a half and…

B: That’s right, yes.

L: And, do you have any idea what figure we’re up to yet?

B: Yes, it is $16,920, which is just wonderful.

L: That’s incredible.

B: Yeah, I’m just so amazed.

L: And that’s like, a fifth of the way, if my maths isn’t off.

B: Yeah, no, you’re exactly right, it’s about a fifth of the way. Just over 20%.

L: And, is there a deadline for this, like can we take the next 20 years raising the rest of this money or do we need it like, yesterday or like, what sort of time period do you think this will go over?

B: We’re focusing on a year, I think, for this.

L: So, by May 2015, we want this fully funded.

B: That’s right, yes.

L: Ok, that’s terrific. And, like, how does it work? So you go to the website, www.hypersomniaresearch.org and a lot of the information I’ve seen there is exactly the information you’ve shared with us on this podcast, but if someone wants to donate, what do they do next?

B: So, it’s a little complicated, admittedly, and I’d like to just walk you through it, if I may. So you go to that webpage and there are green donate now buttons all over the page, and you click on one of those and that will take you to the Emory donation page and that is where we are set up.

L: So all the money…you’re not collecting it personally, it’s collected by Emory University, right?

B: That’s absolutely right. 100%. We’re just serving as a conduit for Emory’s research fund.

L: And, does that mean people get like, some kind of tax benefit? I don’t know how it works in the US?

B: Yes, yes, so any and all donations made through the Emory University webpage are tax deductible. Not for those of you outside of the US, but if you do donate from the US, you will get a letter from Emory, a receipt from Emory, thanking you for your donation and you can deduct that from your taxes

L: Well all that sort of stuff helps.

B: It does.

L: So you go to the webpage, you click the green button, you go to the Emory website and what happens next?

B: So you’ll come to a page that says: Make a Gift Online and underneath that heading is “Select Gift Direction” and, this is all filled out for you, so it should say “School of Medicine” and then there should be a bar that says “Select” next to “Select Fund” and that just stays the same so this whole are should stay the same. And then beneath that there’s “Hypersomnia Research Project” and then there’s an appeal code, E4HRP, below that…

L: But all of that autofills if you click the green button.

B: That’s right. And I have noticed, at times, that I’ll refresh this page and that does not autofill for some reason. I’m not sure why.

L: Oh, so people need to make sure it’s there and if it’s not there then go back and click the button again.

B: That’s right, I’d say that’s the easiest way. If it’s not going to the hypersomnia research project, to go back to the hypersomniaresearch.org and click donate now and all of that will auto fill again. And then moving down, selecting the gift amount, there’s set gift amounts there ranging from $50 to %2,500. Really, any amount helps, $5, $20. And you can enter that gift amount in the box there. They have a box where you can enter that.

L: And is the only option like a once off?

B: No, you’re right, and that is another thing that I don’t think I’ve given enough air time to in the page… is that…

L: Well, we’re only a week and a half into this, right, so, you’ve got to be kind to yourself.

B: That’s true. Uh, the recurring payments, those are really valuable. If people can set aside $20 a month to pay to Emory, um, those, that’s a really valuable contribution in its own way. So there’s a button here that if you’d like to split your gift into recurring payments you check that box, and then it will come up with another set of things to fill out. Now I have to be honest, I have found this page confusing, no offense to Emory, but I have found this page confusing and I think the one way, or another way to set up a recurring payment is to visit this page once a month and donate $20, to make a commitment to yourself to do that, because a lot of this stuff gets confusing on the page and it um, it’s not, I’ve tried to set up recurring payments on it and came away with sort of, I’m not really sure if I’m going to be giving payments…

L: So what you’re saying is like, don’t visit this when you’re deep in brain fog land. Like pick a time of day when you’re more awake than normal whatever that means.

B: Yes, I would agree with that. It’s your money, so I think that, um, you want to be sure how you’re donating it and where you’re donating it.

L: Absolutely, so what happens next? You chose your amount, you chose whether it’s a once off or a recurring.

B: And then you can donate in honor of somebody, if you are donating in honor of a friend or a loved one who has hypersomnia, I think that’s really touching when that happens, and then, beneath that, you enter your personal information and then you move on to enter your payment information, which is on the next page.

L: And refresh my memory, from memory it was like Visa, Mastercard, American Express type of options.

B: Right, right.

L: If people want to pay by a wire transfer or a check is that something they can do through the online system? Or do they have to do it some other way?

B: Great question, and maybe you can help me out with this one Lloydy, I myself have an aunt who would like to donate and she can only donate through checks so I believe that it’s possible to donate through checks and wire transfers, are you, do you know anything about that?

L: I don’t know, but I think that it’s something that it’s really important that we find out and maybe when we find it out it’s something you can put on the hypersomniaresearch.org website because I’m sure there must be an address that you send it to, or a form that you print and fill out and I’m sure that there’s going to be people wanting other options besides just the different cards.

B: Good idea. Okay, I’ll put that down for the next update on the hypersomniaresearch.org.

L: So, you fill in all the details, you punch the button, it does its thing. You get an email next right?

B: That’s right, yes, you get an email from Emory University, a receipt which can also be, serve for your taxes, by the way. Um you get a receipt from them and, we would like it if, you’re willing, if you would sent that receipt to [email protected], so that we can update our total on the website immediately. Um, if you don’t, we will still update the total and note your contribution, it’s just gonna take a little bit longer because it takes awhile to trickle down into the Emory system and for them to report back on it to us.

L: So if someone wants to make a donation and have it reflected in that little thermometer straightaway, they’ve got to email that receipt, just forward that receipt to [email protected]

B: That’s right.

L: But, I mean, a lot of people out there with hypersomnia have sort of alluded to this before, it’s not exactly a disorder that gets you rich, so there’s probably lot of people listening to this who are thinking, goodness, like, where I am right now, it’s not financially responsible for me to be donating to something like this, how can people donate if they’re in situation like that.

B: I’m really glad that you asked that because this is something that we’ve bounced around a little bit, but I’d like other people’s input on this because I’d really like this effort to also serve as a celebration of those who do have hypersomnia because I think we really do deserve to be celebrated. So many people on this have a disorder that’s invisible but that also prevents them from, you know they have to fight, everyone here has to fight every day, so I’d like to see us celebrate it by perhaps involving those folks who aren’t, who don’t have as much money to donate, by involving those folks in some kind of telecommuting common fundraising events. So, one that Diana Kimmel has going right now is collect your change for the month of June, and donate that, I think that’s a great idea, and hopefully we have similar ideas in line with that one.

L: And that’s so easy right, like every time you pay with cash they give you back a pile of change.

B: Yeah.

L: And you normally just like, like I don’t know about everyone else, but I get home and have like a little bowl on the dresser and I just dump it in there. I know some of my friends dump it in their car and every time they turn a corner you hear this sliding of change across the insides of the car.

B: Yeah, yeah I think that most people have a few quarters in their seat cushions. So, just exploring around the house and finding, you know in the drawers or underneath the couch or under the, wherever, it could add up.

L: But I think also, we can’t underestimate how many people care about us when we’ve got hypersomnia. And how far personally asking friends and family for their support can go.

B: I completely agree with you. I’ve found since I’ve accepted my condition, I really do feel there’s a similarity with “Coming out” um, and I’ve come out, and let all my friends know that I have this and my family members and I’ve just been amazed – it’s a weight off my chest, for one and second, people are concerned. People from all over have said how much they admire me and want to donate, and I just never expected that, I never expected that people would actually welcome my um, coming out, so.

L: And I guess we see this with other conditions, like someone was telling me just the other day how one of their friends was diagnosed with breast cancer and then all of a sudden the friends and family of that person are doing fundraisers, they’re doing fun-runs, they’re like, baking goods for them and taking them round, and there was just a huge outpouring of support when they heard about this person and her diagnosis.

B: That’s so great. I, for me, I find that, sorry go ahead.

L: I mean this is the thing: if we give people an opportunity to know what we’re going through, um, sure everyone’s got their horror stories of sharing this with someone and them being less than understanding, but I think that most people out there are good people and they want to support people who are struggling and you definitely have time where you’re struggling with hypersomnia.

B: Absolutely, yeah, and so, I think just going back to the celebration aspect, I would hope that um, one thing I’d like to do is to organize a spaghetti dinner, or a movie night, and say, maybe you know, this is a week for spaghetti dinners and, if you’d like our help organizing a spaghetti dinner for you and your friends and then we’d love it if you’d donate the money from that, so say you charge everybody $20 to come to your spaghetti dinner and you send us a picture of you and your friends, um, having spaghetti dinner and I think that would really be a fundraising achievement, it would also be an awareness achievement and a celebration achievement so, I hope we can brainstorm as a community and get more events like that which people would be interested in doing.

L: So now if people want to be involved in that brainstorming obviously there’s the Facebook group, which, if you’re listening to this and you haven’t joined it and you’re a patient suffering I would highly recommend, just search Facebook for Major Somnolence Disorder and that group will pop right up, but um, I noticed that there’s that little email sign up at the bottom right of your web page. If people sign up to that will they get kept abreast of all these ideas like the spaghetti dinner week, and all those different things, or?

B: They will, absolutely, yes. Um, there is the Living with Hypersomnia email list and then there’s also hypersomnia research email list and you can sign up for either of those, or both.

L: Absolutely, I mean, I love Facebook, but there’s lots of websites I go to where I don’t want to be part of the facebook stuff that goes with that website, so if you’re one of those people then definitely put your email address down because it’s really easy to read an email if the timing’s not great, but it would be a real shame if you didn’t hear about some of this stuff if it’s something that you care about.

B: Yes, absolutely, and, so I wasn’t sure I thought you said the top right of the page. It’s actually at the bottom right of the page, for those who want to sign up for the hypersomnia research email updates.

L: So the bottom right of hypersomniaresearch.org.

B: Yep.

L: Alright, look Bailey, I really appreciate your time, running through all of this for the podcast. I mean, this is a little bit of a change in the program from what we normally do with these podcasts, but I just think that the research project is just such an important project. The things that are gonna happen when this is fully funded, it just creates so much hope that things are gonna get better for us, and I really wanted to highlight it with a podcast episode. Is there anything we haven’t covered, that you really want to share? Or have we covered everything?

B: I’d like to go back to the fact that Dr. Rye has started. And so that’s exciting.

L: So he’s started the research project? Like, with the…

B: That’s right. He’s started Phase 1 of the project outlined. I can’t speak for Dr. Rye, I don’t want to put words in his mouth, but I would assume that the reason that he’s done that is that he’s so encouraged by our progress so far.

L: And, I mean, I didn’t even really think about that. Like, sure, all three phases are gonna require that this whole thing is fully funded but once you start getting the funding in, if they’re gonna get started um…

B: Better sooner than later, yup.

L: Absolutely, that’s really encouraging. Has he given any indication as to when the results from phase 1 will be ready, like are we waiting 6 months or a year or a couple of weeks?

B: I’ve heard, hopefully by the end of the month, and, don’t quote me on that, but I think that we can look for some update how it’s going in a month.

L: And for those of you tuning in, this is being recorded on the 6th of June, 2014 so hopefully by the end of June we’ll have some good news to share, and I guess that will go up on hypersomniaresearch.org either way?

B: It absolutely will, as soon as we get it.

L: And Living with Hypersomnia is doing everything we can to support you and the team at Emory in this project so we’ll definitely put it up on the Living with Hypersomnia website as well and in the Facebook group, and I’m sure there’s gonna be a point where you guys get a little bit sick of hearing about this, but it’s really important and I think we’re better with people hearing about it two or three times, and every body hearing about it than some people missing out.

B: I agree, thank you Lloydy.

L: No, thank you so much Bailey and we’ll probably welcome you back in another couple of months for another update. Hopefully, this time next year, what, May 2015, this thing is gonna be well and truly funded and we’ll be able to talk about what the results of that are, and how those help each and every one of us as patients. So, thank you so much for your time today. I really really appreciate it.

B: You’re welcome, good to talk to you Lloyd.

L: Ok, bye bye.

B: Bye bye.

,

Blood Tests for Common Causes of Sleepiness

4
by on May 15, 2014 at 11:08 am

blood-test-tubePart of having a diagnosis like Idiopathic Hypersomnia means excluding EVERYTHING else that might possibly be causing your sleepiness. That means excluding other sleep disorders (sleep apnea anyone?), psychiatric disorders (bipolar disorder, depression, etc), viral or bacterial infections, hormone or vitamin deficiencies and so on… One of the most commonly conducted procedures for those complaining of being sleepy or fatigued is a series of blood tests but they are often done at the very beginning and never re-visited in too much detail. However, that’s a mistake, as, there are many things shown in the blood that can help us feel more AWAKE, diagnosis of IH or not.

With that in mind, Living With Hypersomnia has consulted some of the top sleep doctors to ask, “What would you test for in the blood of someone with IH?” We have collated their replies, screened them past a medical person to make sure everything is written correctly and you can check out the list below:

  • Iron studies: Iron, TIBC, %Sat, Ferritin
  • Carnitine panel: free, total, esterified, esterified/free
  • Thyroid studies: TSH, Free T4, Total T4
  • Vitamin D, 25-Hydroxy
  • C-Reactive Protein
  • Vitamin B12 and Serum Folate
  • Complete Blood Count
  • Complete Metabolic Panel (glucose, sodium, creatinine, etc)
  • Cortisol (preferably 8 am spot cortisol or 24-hr urinary cortisol)

Is this a complete list? No. Are these tests that everyone with IH should have done? No. But they are a good list to discuss with your doctor so they can test the ones that they think are relevant to you! You might also want to request your past blood results and go through to check whether these various tests have been run for you yet!

If any of the tests show up outside the normal ranges then that is a great discussion to have with your doctor. There are treatments for abnormalities in these levels that might lead you to feel less sleepy.

Have you had all these tests done? Were any of yours outside the normal range? And if so, did correcting them make any difference to how you felt? Leave a comment below and share your experience with the rest of the hypersomnia community :)

Living With Hypersomnia in Washington State

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by on May 5, 2014 at 12:05 pm

This photo comes from Princess in Washington State:

princess-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

Receive the Living With Hypersomnia Email Updates

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by on May 1, 2014 at 11:35 pm

lwh-mailchimpAre you interested in Hypersomnia, but not always able to check this website regularly? Do you want to make sure that you never miss an important development? Developments like new treatments, event announcements or fundraising drives? Then make sure you put your name down to receive the Living With Hypersomnia Email Updates.

The email updates are a way for you to keep your finger on the pulse. Don’t want anything to do with the facebook group? Or don’t have TIME to read the facebook group? Then put your name down below.

I’m not going to lie to you – these email updates will be pretty irregular. You might go weeks or months with barely anything from us, but then you might get two in a week if there’s news to share! The email updates are 100% free to receive and at any time you can unsubscribe from them if you decide that they are not for you.

Please fill in the form below and next time we send out an email update you will receive your copy. First name and email address are required, but last name is optional.

Note: After filling in the form you will receive an email asking you to confirm your subscription. Please make sure you click the blue button in that email!

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!

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