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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

Coming to an Understanding – By Dean

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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.

Living With Hypersomnia in Sweden

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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

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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

Living With Hypersomnia in Canada

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by on September 16, 2014 at 5:40 am

This photo comes from Valerie in London, Canada:

valerie-living-with-idiopathic-hypersomnia

This photo comes from Lisa in Nova Scotia, Canada:

lisa-living-with-hypersomnia

This photo comes from Krista in Ontario, Canada:

krista-ontario-canada-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

Anger And Stimulants – By Dean

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by on September 9, 2014 at 11:37 pm

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

People with IH often ask if it’s normal to have problems with anger when taking Adderall and some other stimulants. The simple answer to this question is “Yes”, but the issue isn’t quite that simple.

Living with hypersomnia is hard in so many ways, and this usually leads to bottling up a lot of crap. Bottling up emotions isn’t good but we have to do it to some extent because if we didn’t we would always be whining about something. This bottling up is part of our ever-present “game faces”. When we face a difficult situation we need to try to deal with that situation like everyone else but we have a lot of extra stuff working against us – we have the bottled up feelings fighting to come out and our capacity to deal with difficulty is severely hampered by both our sleepiness and the sleep deprivation caused by the permanency of that sleepiness. When you add the fact that stimulants leave some people prone to emotional outbursts (especially when they are wearing off) you can be stuck in a bad situation.

We always hear “God only gives you as much as you can handle”, but what exactly does “as much as you can handle” mean? I am hoping it means “as much as you can survive” because if it means “as much as you can handle with grace and dignity” he has severely overestimated my strength and this is one topic where I need to try harder to follow my own advice. We are human and between feeling like crap and being criticized for our shortcomings by people who have no frickin’ clue we are forced to endure more than a person should have to endure so we have a right to get angry sometimes. Throw a stimulant into the mix to mess up your system even more and it’s downright unavoidable.

So yes you might have difficulties with anger at times. This might be something to talk to your counselor about (Yes you have a right to have one of those too!) or just keep in mind that it will be coming every now and then and try to be prepared for it when it happens. DO NOT beat yourself up if you haven’t handled a situation with your kids as gracefully as you think you should have. You are human and you have a lot of factors working against you and the fact that you are reading this right now is a pretty good indicator of your desire to be the best you that you can be and you are probably handling things as well or better than many other people in similar situations.

Perfection and hypersomnia don’t go together. At all. Being the best you that you can be is an ongoing process. If I ever figure out the trick to it I will let you know, but don’t hold your breath.

How IH Affects Us – By Dean

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by on September 2, 2014 at 11:43 pm

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

When we are assessing ourselves for how IH affects us and when we are communicating it to others it would be helpful to clearly separate and specify four different factors:

1) How it makes us feel physically (intensity of sleepiness, etc)
2) How it affects our abilities
3) How it makes us feel emotionally
4) How it affects people around us

We have a tendency to just focus on how sleepy we feel. We talk to each other and other people about how we feel so sleepy all the time and that’s why life is so hard and we just can’t do things because we feel so crappy. Yes that is a big part of IH, probably the biggest, but that is also the part that they think they can identify with because “they know what it’s like to be really tired.”

Thus, we need to focus more on the other effects of the sleepiness. We all have talked about how we push ourselves so hard to get through the work day, but everyone feels like they push themselves to their limits to do their job so we have be more clear and focus on how it affects our ability to function regardless of how much effort we put in. I used to always say that “can’t” isn’t in my vocabulary (of course it obviously is since I just said it) so if there was a challenge I would do whatever it took to conquer it, but I have had to accept the fact that that ability is simply gone. I have 90% of what it takes to do just about anything, but that other 10% is kind of a deal breaker.

If you are going to dive into a battle you have to have the confidence that you can win and the skills and ambition to make it happen, but when you are diving into a battle it is just as important to know what your weaknesses are as it is to know your strengths because if you deny that weakness your opponent will find it and you will be done. Regular life is the same way, and in life with IH it is a very big deal because you have obvious weaknesses and we all want to hold on to our pride for as long as possible but facing your weaknesses head on and acknowledging that regardless of how deeply you are devoted to following through with something you just can’t anymore can bring you some clarity. Getting comfortable with the word “can’t” can actually be liberating. Saying “I can’t” takes some pressure off of you because you are no longer bound to expectations that you can’t meet. It can help you establish realistic goals and instead of struggling or failing at a higher level you can be successful at a lower level.

When you accept this for yourself you can clearly work on helping others understand where you are at and the actual, real effects that IH has on you and how you may despise it to the core but it’s just how it is.

There is no such thing as a pill you can take to replace sleep. A normal person can’t stop sleeping and take a pill instead and expect to function normally. I think some people compare us to how they use caffeine when they get tired during the day and once they get rolling they feel sharp as can be, but their tired isn’t IH tired. Some of us may feel fully “awake” with the help of meds, but for a lot of us it’s just energized, not awake. The lights are on but nobody’s home. There is no substitute for restorative sleep.

From there you can move on to identifying the different ways that it affects you emotionally, like how frustrated you are about your job situation, and how it is so hard to maintain a positive attitude when you feel like total crap every second of every day, how guilty you feel because of how your IH affects the people you care about, and if you are no longer able to work that adds a whole new issue because you feel like IH has completely taken over your life, that you have given up on your dreams, feeling judged by others on a whole new level, becoming more isolated from the rest of the world, feeling like a burden on society, or whatever.

Finally, you should try to identify how your IH affects those around you, talk to them about it, and come to an understanding on things. If your significant other or coworker has to take on additional duties because you can’t anymore, look for other simpler duties have they been doing that you can take on to give both you and the other person the feeling that you are doing your best to carry your weight.

If you find this to be helpful, bookmark it for future reference!!

This post originally appeared in the Idiopathic Hypersomnia Facebook Group and was reproduced with permission.

Living With Hypersomnia in Georgia, USA

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by on September 1, 2014 at 6:04 am

This photo comes from Melissa in Atlanta, 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

Living With Hypersomnia In Norway

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by on September 1, 2014 at 6:02 am

This photo comes from Lilian in Norway:

lilian-norway-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

Clarithromycin Cardiac Risks for Idiopathic Hypersomnia

1
by on August 23, 2014 at 10:00 am

Recently Jonas started a discussion in the Major Somnolence Disorder Facebook Group about a study on the risk of cardiac death from the antibiotic clarithromycin. Following research at Emory University a growing number of patients with Idiopathic Hypersomnia have been talking to their doctor about clarithromycin and seeing some pretty promising results! BUT now research has come out about clarithromycin having a high risk of cardiac death – what does this mean for people taking it for idiopathic hypersomnia…?

Executive Summary
As with every medicine you are taking – talk about it with your doctor when you have cause for concern. If you’re thinking of trying clarithromycin then it is definitely worth raising this concern, especially if you have other cardiac risk factors. The absolute number of people impacted by cardiac problems who take clarithromycin is still very low. Compared to traditional hypersomnia treatments, like amphetamines, clarithromycin could still be a safer option.

Discussion

Before we start, you probably want to have a quick read of the research article itself:
Use of clarithromycin and roxithromycin and risk of cardiac death: cohort study (Published 19 August 2014)

It has also been reported in various online newspapers including:

These headlines put a lot of emphasis on the risks! But how much cause for concern is there really? Let’s look at some of the main points:

  • The absolute risk is low. While the relative increase in risk of cardiac problems from clarithromycin is large, the absolute risk is low. It’s a bit like studying 100,000 lottery winners and concluding that people with brown hair are twice as likely to win as those with blonde hair – even though the likelihood has doubled, still very few brown haired people will be winning the lottery!
  • Clarithromycin was compared to other antibiotics – not to psychostimulants or flumazenil. There are risks to all medications. The numbers didn’t show a significantly higher risk from clarithromycin than would be expected from psychostimulants in healthy people. And for medicine like flumazenil the safety data is much, much sparser.
  • The age of patients was 40 – 74. Age is definitely a factor in cardiac disease, but many people with idiopathic hypersomnia are in their 20′s or 30′s. There is no way to know from this research how these risks translate for those under 40 or over 74.
  • The risks are greater for women. The risk for men was actually pretty similar. This is much more likely to be a concern for women than men.
  • People were using clarithromycin for a week~ at a different dose to what is used for idiopathic hypersomnia. This means that these results are of most relevance during the first week of treatment with clarithromycin. These results don’t suggest what might happen from long-term use of clarithromycin or from using it at higher dosages.
  • No cardiac effects were seen after stopping clarithromycin. This suggests that while some people on clarithromycin had cardiac events, a one-week course of clarithromycin doesn’t put you at higher risk after stopping it.

Lots of things to consider! But on balance, I feel it’s nothing to get into a panic over! Clarithromycin being linked to heart problems isn’t new either. In the past there has been discussion of Clarithromycin’s cardiac risks. This article from March 2013 is on such example: Macrolide Antibiotic Linked to Increased CV Risk in Patients with Lung Conditions

Summary
At the end of the day, this is all pertinent information for making a decision about whether clarithromycin is a possible treatment for you, or not. Please use this information as motivation to have a discussion with your prescribing doctor and allow them to guide your decision making!

 

Note: While best efforts have been made to provide accurate information – I am not a doctor! Please treat this as general in nature. If you’ve got further information to add please leave a comment.

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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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