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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. This website is owned and maintained by Lloyd. While the Living With Hypersomnia website links to other organizat

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About Us

A Great Loss

8
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

0
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

4
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

0
by on October 19, 2014 at 5:13 am

This photo comes from Rita in Stockton, CA USA:

melissa-ga-idiopathic-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

in Uncategorized

Living With Hypersomnia in Georgia, USA

2
by on October 18, 2014 at 6:04 am

This photo comes from Melissa in Atlanta, GA USA:

melissa-ga-idiopathic-hypersomnia

This photo comes from Lisa in Woodstock, GA USA:

melissa-ga-idiopathic-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

Support for Parents of Children with Idiopathic Hypersomnia

2
by on October 4, 2014 at 12:32 am

300px-ParentChildIcon.svgIdiopathic Hypersomnia is a tough disorder and not a lot of high quality information exists yet. But it’s not just hard for the patient, it can be really hard for their family and friends too. Up until now the support groups have primarily existed for the benefit of the patients themselves. This is beginning to change though with groups for the supporters of people with Idiopathic Hypersomnia beginning to gain their own momentum.

Today Essie announced on Facebook that she is starting a Facebook Group specifically to support the parents of children with Idiopathic Hypersomnia. If you’re a parent of someone who has Idiopathic Hypersomnia and you’re looking for more support, or you’re in a position to provide support to other parents, please check it out:
https://www.facebook.com/groups/619160951529889/

 

Follow Your Heart – By Dean

3
by on September 22, 2014 at 11:49 pm

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

I couldn’t wait to finish my shower and sit down to start typing when I came to this realization.

We all have heard people talk about choosing a career doing something you love, but for most people this sounds a bit oversimplified because there aren’t a lot of career options available in what we do for enjoyment. I think almost everyone has wished they could find a way but have either cast it off as silly or looked into it and found that it just wasn’t realistic because it wouldn’t generate enough income, would require going back to school, or would require a sizable investment to start a business.

When I was getting ready for college I didn’t have any hobbies or real passions so I just went with something that worked for me. I have been finding myself more over the past several years, but I haven’t figured out how to make a living writing music when I can’t sing or play any instruments or as a bike repairman because it wouldn’t pay well and I can’t be on my feet all day or as an inventor because I would still need a source of income until I finished my first world-changing invention.

The whole employment issue changes when you have hypersomnia that is severe enough that you can no longer perform sufficiently at your chosen career. This has happened to a lot of people I know, and to me. I struggled to finish my degree in Construction Management and directly used my degree for a year but couldn’t function properly in the quiet office setting. I took another job that included more field activity, but that still included too much quiet office time so I slowly worked my way down the ladder and was working as a carpenter in 2009, when my very understanding commercial construction employer couldn’t justify keeping me on the payroll anymore because I was only productive for about half of the hours they were paying me for so they permanently “laid me off” and I have been lost ever since. I am on disability, but that doesn’t come close to paying my bills so I have tried a few different things for part time or self employment, but I now have bad hips and a brain that doesn’t work right most of the time so my options are pretty limited.

A couple years ago though I found the facebook IH support groups and something in me started to evolve. I found comfort in finally having people who understood what I was going through and that was a huge change for my emotional well-being so to a large extent I felt more grounded. I found that I knew more about the struggles that people with IH face than a lot of others in the group due to how long I had been dealing with it, the research I had done, and the variety of things I had tried to deal with it, but I still had a lot to learn. In the following months I learned that I had a knack for talking to people about all of it, and for understanding the ins and out of the constant flow of medical information that was posted, and, most importantly, for identifying the details of the physical and emotional struggles we face and putting them into words that people could understand. Over several more months I found that I was really good at this and that this skill helped a lot of people and for the first time in my life, although basically failing to keep my head above water in real-life responsibilities, I felt like I really had a purpose.

I still had a hard time explaining why I could function so well in this virtual setting though when my functioning is so limited when I leave my desk and try to deal with the real world, until this morning in the shower. This morning in the shower I realized that all of the stuff I have to do to try to keep my bills paid and my house in order involve using my brain, while everything I do in those support groups is purely following my heart. Sure my brain is involved, but my heart is engaged and forcing it to work. I think I am a pretty smart guy and my brain is capable of some pretty cool stuff, but it is really just a tool and is relatively worthless when my heart isn’t operating it.

Ok, this got to be a lot longer and a lot more rambling about me than I intended, but hopefully it all helps to get to the point and I will back up to help you get there.

We all have done everything we can to do our best to be the most productive part of society that we can be and to provide for and build a future for or ourselves and our families, but many of us are losing our ability to maintain the careers that allowed us to do so and many of us have already lost those careers and are facing the most difficult times of our lives. We are limited by both what we are capable of doing and the number of hours we are able to do anything at all and the future looks more grim every day and this situation can be crushing to anyone’s emotional well-being.

There may be a little bit of a silver lining here though. I’m not going to imply that this little silver lining is going to replace the course you were on before, but it’s better than nothing so it’s something to try to focus on anyway. Are there things that you can still function at? Do you still have a hobby that stimulates you enough that you can function at it for a couple or few hours at a time? Do you know why? Because you are following your heart. Does anyone do this for a living? Does anyone make any money by doing this? If no one else does, could you? Is there anything you could make to sell at craft shows, flea markets, or on craigslist to make a little bit of money and provide some sense of accomplishment? Do you have something to offer that someone else really needs and you could provide through some kind of volunteer work?

You may feel down and out. You may feel like you have hit rock bottom. I know how this feels because I have been hovering there for quite a while. You don’t have to be happy about things. You are human and you aren’t the productive person you used to be. You can work on resetting your perspective though. You can be a valuable part of society without playing the stereotypical productive role you used to have. The “productive” you might be gone, but your core is still intact. You might not be the provider you used to be, but if you can let go of the expectations you think everyone has of you and do what comes naturally for you you might find that you are more fulfilled than ever and that people look up to you just as much but for different reasons. You just need to tap in to the resource inside of you that can never be depleted – YOUR HEART – and follow it.

Coming to an Understanding – By Dean

3
by on September 17, 2014 at 12:35 am

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

I still feel like a hypocrite as far as the whole understanding thing goes because people close to me still don’t get the degree to which my hypersomnia affects me after 30 years of dealing with it and about 25 years of talking to them about it, but now I realize that I have talked about it with them but I have never REALLY talked about it with them.

If you have close friends or family who still don’t get it, have you ever REALLY tried to get them to understand? Have you come prepared with a list of things to say, sat down at the kitchen table, and said “We need to come to an understanding on this.” and focused on their reactions so you knew that you were speaking in a language that they understood and tried working different angles until you knew that everything you were saying really hit home with them? Have you stubbornly stuck a conversation out until the other person said something like “Wow …. I knew you struggled by I had no idea that you struggled in so many different ways!” or even a simple “Huh. I guess you really have been trying.”?

I haven’t, but I sure have felt sorry for myself plenty of times because of hurtful things they have said out of caring because it just doesn’t make sense to them.

If you could use some help with things to talk about you could make a copy of my understanding letter to cover the basics. If you haven’t sent it to anyone yet that would be a good foundation to start from and if you have sent it to them but it didn’t help much you could cover those topics and try to get out of them what they didn’t get about each topic. (If you do that it would be cool if you could tell me so I could try to make improvements to the letter for future users.)

I think we have a tendency to feel that doing so would be drilling other people for our own benefit and maybe we just aren’t up for that for whatever reason, but if they really care about you there is a pretty good chance that the lack of understanding has caused them more pain than you. Maybe yours has been more intense for a while after they have said something, but they might spend a lot of time worrying about you on a regular basis and worrying that they have said the wrong thing or that they should be helping you more or even that they should be helping you less because THEY JUST DON’T GET IT.

So next time you have the opportunity to have a good talk with people who really care about you, do them a favor and sit down face to face and do whatever it takes to help them understand every aspect that you can think of and be persistent for their benefit as well as your own and don’t get up until you have succeeded. Maybe if you reach them they will talk to others in a language that people without hypersomnia understand and everyone will start to come around. If nothing has worked so far you either need to try a lot harder with your approach or take a completely different approach or both.

I don’t want my parents to leave this world disappointed in me, so something has to change.

See Also:
- Understanding Letter By Dean (PDF)

Living With Hypersomnia in Sweden

1
by on September 16, 2014 at 6:45 am

This photo comes from Maria in Sweden:

maria-living-with-idiopathic-hypersomnia

This photo comes from Cia in Sweden:

cia-sweden-living-with-hypersomnia

This photo comes from Lina in Sweden:
lina-sweden-living-with-hypersomnia

This photo comes from Ida in Sweden:
ida-sweden-lwh

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 New Hampshire, USA

0
by on September 16, 2014 at 6:15 am

This photo comes from Lynelle in New Hampshire, USA:

lynelle-living-with-idiopathic-hypersomnia

This photo comes from Ariel in Manchester, NH, USA:

ariel-living-with-hypersomnia-nh

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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