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

Read More
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

Read More
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

Read More
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 Idiopathic Hypersomnia Fa

Read More
Support For Those With Hypersomnia

About Us

The Living With Hypersomnia website is maintained by volunteers from around the world. This website is owned and maintained by Lloyd. While the Living With Hypersomnia website links to other organizat

Read More
About Us

My Most Awake – By Tyler

by on November 25, 2015 at 6:09 pm

This poem was written by Tyler, an American living with Idiopathic Hypersomnia. This poem was written following a night where the author experienced insomnia, a common experience shared by people with Idiopathic Hypersomnia from time to time:

My Most Awake
By Tyler

Normally I’d be deep asleep, somewhere between dreams.
But I am free in tonight’s 4th hour.
Free of unresting rest,
And free to enjoy the sweetest feeling.
Tonight my thoughts are pensive, my mood is melancholy.
Hello again,
My most awake.

Now is when I glimpse back, I feel as I did years ago.
Back when thoughts weren’t cloudy.
Back when thoughts were ordered,
And I could be conscious of my own decisions.
Tonight my mind is open, my intellect is here.
Hello again,
My most awake.

Understand the mixture of sadness, coupled with exhilaration.
For these are the nights I look forward too.
On this night I have the company of my thoughts,
And I greet them as a long lost friend.
Tonight I and I are reacquainted, my soul is thankful.
Hello again,
My most awake.

Here I am nurturing a feeling, a feeling I cannot keep.
Sure tomorrow I will feel the grip of depression.
I may even feel a slight energy,
But that is a poor substitute for this state of gloomy bliss.
Tonight my mornings are a dream, but by morning tonight will.
Don’t go,
My most awake.

Now the clock ticks loader, my eyelids draw closer.
Now the sandman calls at the hour 6.
Once again his prisoner,
And my mind the prison.
Tonight my body betrays me, assaulting my spirit.
Goodbye for now,
My most awake.

Would you like to share your story or opinion about living with Idiopathic Hypersomnia? Please email your entry to [email protected] and mention that you would like it shared on the Living With Hypersomnia website. While we cannot except everything, these stories and opinion pieces are so important to making Idiopathic Hypersomnia more than just what is written in the medical text books.

2:00 a.m. Delirium – By Dean

by on November 14, 2015 at 5:20 am

This poem was written by Dean, an American living with Idiopathic Hypersomnia:

2:00 a.m. Delirium

Let thee rest your tired soul
Concede to your tyrant foe
This thing called sleep does hold the reigns
Without it misery remains

You wish you did not need it so
So within energy could flow
The crutches given can’t replace
Cognition, leaving empty space

Your mind, not what it used to be
Your smile, so others cannot see
What’s missing in your head and heart
Your whole world feeling torn apart

But there are battles you have won
You’ve reached another setting sun
You’ve earned the right to sleep once more
One of these days you’ll win the war.

Would you like to read more?
» Read More Posts By Dean

Would you like to share your story or opinion about living with Idiopathic Hypersomnia? Please email your entry to [email protected] and mention that you would like it shared on the Living With Hypersomnia website. While we cannot except everything, these stories and opinion pieces are so important to making Idiopathic Hypersomnia more than just what is written in the medical text books.

Announcing the Idiopathic Hypersomnia Awareness Ribbon

by on October 31, 2015 at 1:03 am

We are excited to announce the Idiopathic Hypersomnia Awareness Ribbon!

(Click to view a higher resolution version of the Idiopathic Hypersomnia Awareness Ribbon)

This ribbon has been a work-in-progress for many months now. When the discussions first started on the forums in August there were lots of ideas. We were incredibly lucky to have many people sharing their ideas about what would make a suitable Awareness Ribbon for representing Idiopathic Hypersomnia (IH) officially. As the discussion progressed the choices were narrowed down to six patterns and six color combinations. Following hundreds of votes from the patient community we were able to narrow the choices down to the ‘top three’. There was then a second voting period that ran for several weeks in October and the winner was clear to see.

On behalf of all of those involved with creating this ribbon – THANK YOU to everyone who shared their ideas, feedback and votes to make this ribbon a reality.

There is also a pattern design available that might work better than the ribbon in certain situations. You can view and download the pattern by clicking here.

Now, you might be wondering how this ribbon will work. The ribbon has been designed by the community and no person or organization has retained the rights to this ribbon. That means it can be used by any individual or organization for the purpose of creating awareness about Idiopathic Hypersomnia. We encourage you to take this ribbon and use it wherever you see fit! That means you can use it as your Facebook profile, post it to your blog, share it with your Instagram followers or put it onto a tshirt. There is no need to credit anyone – this was a joint project by many members of the Idiopathic Hypersomnia community. Please feel free to share it alongside links to information about Idiopathic Hypersomnia such as the Idiopathic Hypersomnia Wikipedia article or the Living With Hypersomnia website.

Several of us working towards making merchandise available that shows off the ribbon. That is still a work in progress though so watch this space for when that is up and running. Our plan is to sell the merchandise at cost price on a website like Zazzle that prints on demand. This will keep prices as low as possible for you if you want some Idiopathic Hypersomnia Awareness Swag :) We aren’t making any profit from the ribbon, though we hope in the future not-for-profit organisations will be able to use it as part of their IH-related fundraising efforts.

, , , ,

Idiopathic Hypersomnia Awareness Ribbons – Final Vote

by on October 12, 2015 at 12:07 am

After a prior survey (answered by hundreds of patients with Idiopathic Hypersomnia) we have narrowed down the Awareness Ribbon options to the top three. Please take the time to vote as the favourite from this poll will become our official Idiopathic Hypersomnia Awareness Ribbon, as chosen by the community.


To vote, follow this link:

Voting closes soon, so vote now! When the vote closes we will post the outcome to the Living With Hypersomnia website so keep checking back :)

in Uncategorized

Have Your Say: Idiopathic Hypersomnia Awareness Ribbon

by on September 12, 2015 at 6:03 pm

Following discussions on the Living With Hypersomnia Forums progress has been made towards creating an Idiopathic Hypersomnia Awareness Ribbon! Lots of ideas have been suggested and we are trying to narrow the choices down so that a ribbon can be made that most of us can be happy with. In order to do that, a survey has been created to ask for YOUR opinion:


Please, take the time to fill in the quick one-page survey. We especially want to hear from you if you are a patient with Idiopathic Hypersomnia or a supporter of someone with Idiopathic Hypersomnia. If this ribbon is going to represent Idiopathic Hypersomnia then we want it to be right!

The main two decisions to be made are:

  1. The best template design; and
  2. The best color (or colors).

The survey is really quick and it asks for your three preferences. This is your chance to say, so take a moment to respond by following this link:
(One response per person, please!)

We will share the results when voting closes at the end of the month. There will then be a final vote with 3 designs, based on the results of this survey. If you haven’t already put your name down for the Living With Hypersomnia Email Updates so you get an email when the final vote takes place.

in News

Any light on the horizon for you? – By Dean

by on September 10, 2015 at 7:30 am

This post was written by Dean, an American living with Idiopathic Hypersomnia:

Any light on the horizon for you?

I like a lot of things about me.

I know I’m a good guy, and a loving dad, and I am creative, and expressive, and have excessive work ethic, and I have a lot of skills and talents, and I am detail oriented so I have high standards for anything I do, and I like how I thrive on helping others. I am pretty extroverted but I like my alone time too, mostly to make use of my skills or talents.

Unfortunately, throwing Idiopathic Hypersomnia (IH) into the mix makes a big frickin’ mess. It makes most of my skills and talents feel like curses because I know how to do all of these things but my foggy brain can’t process things properly anymore so many mistakes are made, everything takes 5 times as long, and even though I am on disability and a short sleeper and should have plenty of time, eventually I have to move on to other priorities so nothing gets done. I mean if you look around my house you will see roughly 75,000 things I have made or done in the 9 years I have lived here and literally not one of them is complete.

I do a lot better when someone else is around to help me stay focused, but when I am alone it’s a joke. I hop from one thing to another, leaving messes everywhere I go, and more often than not I’m focusing on whatever is at the bottom of my theoretical list of priorities. I am just not cut out for disability because it puts me in an eternal loop of attempt and failure. I am alone all week long and I don’t mind being alone, but I can’t stand the alone me.

And more positive traits turn into more negatives. Being detail oriented I see every detail I have missed or not gotten to, and with my work ethic there’s no way for me to not feel like a failure for my complete lack of productivity. When your primary source of personal satisfaction is accomplishment and there’s no accomplishment there’s no personal satisfaction.

Then there’s the whole “other people” issue. I like being in the underdog position. If someone says “you can’t do that” you can bet that I’m gonna do it or die trying. My problem is being in the opposite position. After talking to me and recognizing my vision and ambition people think I am capable of just about anything, so later when they see nothing done or nothing done properly they see it as some kind of character flaw. People who have known me well for most of my life remember what I used to be capable of, and now when the people who care about me realize I’m just not capable of those things anymore I know it hurts. Often I am in the position of having to choose whether to explain why I don’t do things properly so people don’t see it as a character flaw, but sometimes it’s just easier to let them keep thinking that and when they really care about me it can turn the disappointment into pain and sometimes I’d rather just let them be disappointed.

Usually I would have a nice, concise closing line here, but this turned out to be a lot longer and different than I intended and there are things I will probably come back an change but my brain is now fried so I am just done.

Would you like to read more?
» Read More Posts By Dean

Would you like to share your story or opinion about living with Idiopathic Hypersomnia? Please email your entry to [email protected] and mention that you would like it shared on the Living With Hypersomnia website. While we cannot except everything, these stories and opinion pieces are so important to making Idiopathic Hypersomnia more than just what is written in the medical text books.

A Great Loss

by on October 27, 2014 at 7:48 pm

This is a letter from a French Narcoleptic who killed himself in October 2014. He was 26 years old. He suffered from Narcolepsy since he was 14 and was diagnosed at 16 years old.

After being a brilliant student in political science, he moved towards to music, his passion. He had just finished writing and recording his first album which was supposed to be released in November 2014.
His family and friends did their best to support every moment while thinking that over time, he was managing to tame narcolepsy.

This letter was written in French and it was translated by Patrice from the Major Somnolence Disorder Facebook group:

Letter to a kind unknown person

Dear friend,

Maybe you’re curious to know what is my illness?

You’re probably enough detached from me to listen serenely.

I met very few people who were able to listen. Maybe any.

But you’re here, with your fresh mind and your peaceful eye. You’re here, and because we could meet and maybe (I do not doubt) we could appreciate ourselves, you whisper me a sincere attention.

So I will try to present you my illness with as much lucidity as I can. I’ll explain you how this disease is hardly a sinking despite appearances.

I will also try to not spread myself too much, the principle of this disease being relatively simple in my opinion. Almost as simple as the rechargeable battery principle.

The violence of some of my statements may offend you and may awake in you some suspicions. In this regard, I will try to put my pain aside to explain you this disease without any exaggeration.

Sometimes when the body suffers, the mind receives this pain disproportionately. I also experienced this pitfall and I couldn’t talk to you 5 years ago as I’m doing right now.

It took me 10 years to succeed to free my mind of this enormous weight. Yesterday when my body was suffering, my mind was too and these two pains seemed to accumulate themselves. It’s because I had not yet accepted the disease, I had not yet taken the measure of its magnitude. I would not claim to have succeeded to accept it totally, but the outcome I found, the emergency door I chose to take, allows me the luxury of an ultimate detachment.

Finally, if you agree, and if I have not already exhausted your patience, I wish to entrust myself to you on this other life I would wanted to know if the disease had not seized me so violently. Pain gave me the true taste of things, learned me what I really love and at least I owe it that.

What is the point, you would say, if it is to end his days without having enjoyed? It’s because the object of my desire is an inacessible horizon. Can we cross the Atlantic with a ruined raft? What am I saying? Can we just cross the English Channel?

This disease exhausts you every day and you ask yourself “Why? “. But this is its essence. It does not need a reason. It exhausts you and that’s all, as it’s a genetic malformation.

Sleeping 15 hours will not help you either. The first time your body will fight fairly easily and your mind will naturally judged this tiredness like a temporary one; or worse, it’s just a mononucleosis? But no, you will live with it all your life!

When you’ll understand: brace yourself. Each day will look like a day after a sleepless night, or as a tomorrow of drunkenness.

So what? Give up so quickly? No, you are part of the lions race.

Somehow, you will adapt yourself to the world of normal people. As a starving in the Garden of Eden attending powerless to the banquet of Gargantua.

Permanently on the edge of sleep, you’ll have to learn to not dive. You will use all the tips, the tricks, the subterfuges you can.

Gradually, from the lack of sleep will born a nervous fatigue. The spirit will fight against the body, but strength to fight: it will use it.

Not in days, not in months. No, you’re stronger than that! It will take several years …

You, the one who were hoping to heal sooner or later, you are still the same ten years later, with some disease addition: reflux, back pain, allergies, hypersensitivity to stress, chronic cold members. And you don’t have 26 years yet.

All this without mentioning the social problems that the disease causes. Unable to go out at night without being completely broken the next day, for example, inability to socialize during the day because of fatigue.

You may say, “but there are much more serious diseases than this one,” and in fact, I will give you reason. But as in most diseases, the patient has a certain indulgence from society (would you blame a blind person to cross off accidentally?). The narcoleptic comes up either against society sarcasm when he is recognized as he is, either against a real guilt. With explicit or innuendo accusations ranging from “idle” to “are you a junkie?”

Narcoleptics should receive financial assistance from the state as well as most of disabling diseases.

Tom Derhy

Read the Original Article on HuffingtonPost.fr (in French)

If reading this article has been a trigger for you please seek help and contact your local helpline, such as Lifeline or Beyond Blue.

Living With Hypersomnia in Victoria, Australia

by on October 24, 2014 at 11:55 am

This photo comes from Felicity in Melbourne, Victoria:

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

Flaredown App for Idiopathic Hypersomnia

by on October 20, 2014 at 6:09 am

Idiopathic Hypersomnia is quite the riddle. As a patient it’s really hard to know when we are going to have a good day or bad day, let alone knowing what causes our good days and bad days! While many Apps exist for tracking various a symptom here or a symptom there, none of them work to track the complete picture. That’s why I became so excited when I started reading about Flaredown, a new App that’s being created specifically for tracking chronic illness.

Flaredown is a way to track symptoms alongside external variables such as treatments. Through tracking a combination of quantitative metrics (such as sleep time) and qualitative metrics (such as brain fogginess) it creates a graph showing the times your chronic illness was under control, and when it was flaring up. Alongside your symptoms you can also track your treatments – the medication you take, the lifestyle changes you are undertaking and so on. The hope is that by recording and graphically representing this data it will make it easier to work out both how to avoid the things that make our symptoms worse, and do more of the things that make our condition better.

Flaredown - decode your chronic illness

Flaredown make some pretty bold claims, and their software isn’t available yet so it’s impossible to say just how well they will deliver. But when they initially shared their list of conditions Idiopathic Hypersomnia wasn’t on the list. Well, until a few days ago!

Following Flaredown’s appeal for crowd funding on Indiegogo a group of patients in the Major Somnolence Disorder Facebook Group decided to team up and purchase the $500 Option to Fund a Condition. The condition we nominated? Idiopathic Hypersomnia!

What this means is that when Flaredown becomes publicly available it will have full support for tracking the symptoms and treatments of Idiopathic Hypersomnia. The Flaredown team will work with the patients in the Major Somnolence Disorder Facebook Group to tailor it to our needs. Plus, they promise the Flaredown App will be free, forever. This means that anyone and everyone with Idiopathic Hypersomnia can use this App to track their symptoms at no extra cost. A pretty generous arrangement!

While the Beta testing starts in 2014 the expected public launch of Flaredown isn’t until March 2015. Given how rarely IT projects run to time, that likely means we will see it mid-2015. Keep an eye on the Living With Hypersomnia website for updates as we learn more.

If you would like to contribute towards the money paid to the Flaredown Indiegogo campaign please email Lloyd for further details: [email protected]

Living With Hypersomnia in California, USA

by on October 19, 2014 at 5:13 am

This photo comes from Rita in Stockton, CA 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

in Uncategorized
1 2 3 10 11

Quick Links

New to Idiopathic Hypersomnia? Start by reading about it on Wikipedia. Click here to view the Wikipedia article

Are you on the Idiopathic Hypersomnia Patient Map? Click to view the map now

Idiopathic Hypersomnia Patient Handouts are a great way to help raise awareness with your friends and family. Click to download a PDF

Email Updates