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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

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

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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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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:

This photo comes from Aubrey in Wyandotte, MI USA:

aubrey-mi-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

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:

This photo comes from Mikel of Basqe Country, Spain:

mikel-spain-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 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

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