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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

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

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

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

USA Prescription Patient Assistance Programs for Idiopathic Hypersomnia

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by on August 13, 2014 at 4:39 am

Did you know that you may be eligible for assistance to help pay for, and in some cases cover, your prescription costs?

Finding a best fit treatment for an uncommon disorder is challenging enough without the added worry of affordable access. The good news is that for some, patient assistance programs can smooth the way and help secure budget friendly options. Depending on the organization and patient requirements, programs offer a discount and/or full coverage for qualifying patients. If you’re struggling to cover your prescription costs, a patient assistance program might be the solution for you.

The links below can get you started with learning more about the possibilities. Please keep in mind that all links provided are for information purposes only.

Is A Patient Assistance Program Missing?

This list of options is by no means complete so if you know of other prescription programs that might benefit someone else living with hypersomnia, please leave a comment below with the specific information. It would also be great to hear about your affordable access story so feel free to leave a comment about that too!

This post was contributed by Beth following a discussion in the Facebook Group, Major Somnolence Disorder.

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Living With Hypersomnia in New York, USA

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by on August 4, 2014 at 5:07 am

This photo comes from Gwen in New York, USA:

gwen-new-york-living-with-hypersomnia

 

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

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

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2014 Hypersomnia Conference DVD Podcast (With Catherine Rye)

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by on August 3, 2014 at 5:47 pm

lwh-thumbnailThe fourth episode of the Living With Hypersomnia Podcast Show is now available! Containing an exert from the 2014 Hypersomnia Conference DVD this podcast features Catherine Rye.

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/004+2014+Hypersomnia+Conference+Cat+Rye.m4a

The 2014 Hypersomnia Conference DVD is available for order directly from the Hypersomnia Foundation. To place an order, please follow this link:
http://bit.ly/conferenceDVD

Or to learn more about the DVD, please follow this link:
http://hypersomniafoundation.org/news/2014-hypersomnia-conference-dvd-set-is-now-available-to-order

Living With Hypersomnia in Michigan, USA

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by on August 3, 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:

This photo comes from Lauri in Michigan. Her sign reads, “My loving Husband, and three wonderful children are Living with Hypersomnia because of ME!” with the words Guilt and Shame on the sidelines:

 

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

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

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 :)

You can access the data behind the report and filter more easily by country at this link:
https://www.google.com/fusiontables/DataSource?docid=1gHNCtzUujDJ34_hp0nceULyibCI_d6GyYsxWsLyl

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The Hypersomnia Project Fundraiser Podcast (With Bailey Connor)

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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.

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Blood Tests for Common Causes of Sleepiness

2
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 :)

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