Hypersomnia Foundation

Posts Tagged 'IH'

2017 #BeyondSleepy in Boston

Hypersomnia Foundation Regional Conference on June 4th

The Hypersomnia Foundation (HF) board is finalizing the program for its 2017 Boston Regional Conference. We will provide Eventbrite registration details in the near future via Facebook, Twitter and Somnusnooze.

Information below will help you begin making your travel plans to Boston. Read to the bottom for information on special hotel accommodations!


Conference Schedule (As always, social activities are optional):

Saturday – June 3

  • 2:00-4:00PM-Old Town Trolley Tour https://www.trolleytours.com/boston#home-section  
  • Survey responders voted the trolley tour #1 choice for our Saturday afternoon activity.  Sit back, relax and discover all that Boston has to offer by means of this sightseeing tour!  Group booking arrangements will be available through our Eventbrite once it is live, and we anticipate the per person rate will not exceed $36.00 (seating will be limited).
  • 7:30PM – Meet and Greet Game Night
  • Enjoy a casual meet and greet with light snacks and games hosted by the HF Board at the Residence Inn Boston Harbor on Tudor Wharf.This event is FREE but you will need to register once our Eventbrite is live.

Sunday-June 4

  • 1:00-4:30PM – HF Regional Conference at the historic Boston Public Library at Copley Square, 700 Boylston St., Boston, MA 02116
  • We have booked Rabb Lecture Hall in the newly renovated Johnson Building at the Boston Public Library for another fabulous regional conference featuring dynamic speakers.In this state-of-the-art facility, our outstanding speakers will cover research updates on idiopathic hypersomnia and related disorders. This year’s conference, however, will also focus on advocacy and empowerment to assist people with hypersomnia and their supporters navigate this world living with a chronic, rare disorder.

COST OF CONFERENCE ATTENDANCE - We understand Boston can be pricey. With this in mind, we have been hard at work negotiating the perfect location and space for our conference. The stars aligned and this year attendance to this event will be FREE!
Due to limited space you will need to register for the conference once the Eventbrite is live.

At this moment we are not 100% certain that Livestreaming the event will be possible, but are working diligently to identify sponsorship to help cover AV and Livestreaming costs. Watch for updates.

Hotel Accommodations – For Saturday night, June 3rd, The Residence Inn Boston Harbor on Tudor Wharf has offered a special group rate of $289.00 USD per night (plus tax) for a studio suite.   All rooms include complimentary breakfast and in-room high-speed internet access.  These discounted rooms are limited and we cannot stress enough to book early!

This Residence Inn has generously agreed to offer this same rate for a limited number of rooms for Friday (June 2) and Sunday (June 4) nights as well.

To make a reservation guests can either call 800-331-3131 to the central reservation team (be sure to mention the Hypersomnia Foundation room block) or book online through this link:

Book your group rate for Hypersomnia Foundation

With specific hotel questions please contact Dory Noll at the Residence Inn,
at 617-933-5313 and she will be happy to assist you.

Details about registration for the Saturday trolley tour and the meet and greet, as well as for Sunday’s Regional Conference will be highlighted in a future SomnusNooze once program details have been finalized.

We look forward to connecting with everyone in Boston!

Posted in: BeyondSleepy, Conference, SomnusNooze, Uncategorized

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A Pilot Study of tDCS Looks Promising for the Treatment of IH

A Pilot Study of tDCS Looks Promising for the Treatment of Idiopathic Hypersomnia

Background

Idiopathic hypersomnia (IH) can severely impact affected individuals’ family, employment, education, and leisure activities. And because there are no FDA-approved drugs for the treatment of IH — and even those drugs that are prescribed off label are often not effective or only somewhat effective — researchers have continued to seek out non-drug (nonpharmacologic) treatments for IH.
When a group of researchers in Italy heard about the encouraging results of a study in which investigators used a positively charged electrode (anodal) transcranial direct current stimulation (tDCS) to treat the effects of sleep deprivation, they decided to try tDCS in patients with IH. tDCS is a noninvasive brain stimulation technique that creates temporary changes in the excitability of the cortex – the outermost part of the brain, which is responsible for executive function. In the United States, tDCS and transcranial magnetic stimulation are approved for the treatment of depression.

Who Were the Participants and What Did They Do?

Three men and five women with IH that had not previously been treated took part in the study. These participants were also not taking any medication for other medical conditions or had been on a stable dose of their other medicines for at least 6 months. Their average age was 35. They underwent overnight sleep testing (polysomnography) to rule out any other sleep cause of their sleepiness.

Each person completed several tests of neurocognitive function and depression and the Epworth Sleepiness Scale (ESS) before starting the study (T0) and after the study was completed (T1). They also repeated the ESS two and four weeks after the study was completed. All participants also filled out a 10-point visual analog scale (VAS) to rate their sleepiness before each treatment session and kept a sleep diary for the duration of the trial. Finally, the participants completed a test of attention, the Attentional Network Task (ANT), at T0 and T1.

Who Were the Researchers and What Did They Do?
Dr. Ferini-Strambi and his colleagues in Milan, Italy, performed neurologic examinations on each of the participants and used statistical methods to analyze the results of testing and completed scales.

The researchers applied anodal tDCS by placing one electrode over the left dorsolateral prefrontal cortex, with the cathode over the contralateral orbit. The treatment consisted of 3 sessions of tDCS per week for 3 weeks delivered between 8 am and 11 am. The researchers chose this early time of day to allow the peak stimulating effects of tDSC to subside before typical evening bedtimes so as to not interfere with sleep.

What Were the Results of the Study?

Seven of the eight participants (87.5%) reported improvement in their daytime sleepiness, including for up to two weeks after the end of the study. The results of the ESS supported this reported improvement. Average ESS scores at T0 were 13.25 and at T1 were 7.5. VAS scores dropped from 4.96 at T0 to 1.57 at T1. Improvements in the ANT were significant and reflected faster reaction times at T1 than at T0.


What Were the Authors’ Conclusions?
“The lack of a sham condition represents the main limitation of our study. In any case, our investigation supports the idea that tDCS may provide a valid alternative for the management of [excessive daytime sleepiness] in the treatment of IH and opens the way to further controlled studies.”

(A sham condition is similar to the use of placebo in a drug trial. During a randomized controlled trial that is testing a device, some of the participants are assigned to receive treatment with the device as it would normally be used. Others are assigned to treatment that appears to be using the device, but the device is never turned on or, in this case, does not deliver the stimulation. When the test is masked, or blinded, the participants do not know to which group they are assigned. This type of testing provides stronger results.)

Editor’s note: This safe procedure, tDCS, is being used regularly now for the treatment of depression. We look forward to the results of a larger randomized controlled study in IH, which, according to Dr. Ferini-Strambi, is underway. For more information on tDCS, please visit this link at the National Institutes of Health.

Galbiati A, Abutalebi J, Iannaccone S, et al. The effects of transcranial direct current stimulation (tDCS) on idiopathic hypersomnia: a pilot study. Arch Ital Biol2016:154:1-5.

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Ask The Doctor: Idiopathic Hypersomnia vs Type 2 Narcolepsy

Question: Is there an overlap between idiopathic hypersomnia and type 2 narcolepsy?

Answer: The short answer to this question is yesThe only way to definitively distinguish idiopathic hypersomnia (IH) from type 2 narcolepsy (T2N) is the number of sleep-onset REM periods (SOREMPs) on diagnostic testing. However, in a group patients with IH, T2N, or symptoms of excessive sleepiness who had normal results on a single Multiple Sleep Latency Test (MSLT), researchers showed that the diagnosis changed more than half of the time when the MSLT was repeated1—this means that some patients initially diagnosed with IH may later have a diagnosis of T2N, and vice versa, or they may have no sleep disorder diagnosed and then have T2N or IH on another MSLT, and, again, vice versa. In the general population as a whole (ie, not just those who are sleepy), the presence or absence of SOREMPs on repeated MSLTs is also quite variable,2 suggesting that this may not be the best feature to use in discriminating among diseases. Indeed, prominent narcolepsy researchers have concluded that the presence of “2 or more sleep-onset REM periods [eg, on the MSLT] does not appear to have any specific pathognomonic significance.”3

The idea that T2N can overlap in some of its clinical symptoms with IH, as opposed to MSLT features (that is, “signs” of REM sleep on napping), was first proposed by the Czech sleep neurologist Bedrich Roth.4 In noting that many patients with T2N experienced long sleep periods and sleep inertia, he proposed that both IH and T2N might be considered as part of the same phenotypic spectrum or continuum of “disease.” Roth’s interpretation found further support in his recognition of a potential common heritability in these primary hypersomnias (that is, individuals with T2N and others with IH often have family members with the other condition).

Additional support for concluding that T2N and IH are more alike than they are different comes from four independent sources and lines of inquiry.

  • First, nearly 20% of people with T2N sleep continuously for long periods (for example, for 11 out of 24 hours, thus, meeting the criteria for a diagnosis of IH).5
  • Second, bioactivity that enhances the inhibitory function of GABA has been found in the cerebrospinal fluid (CSF) of many people with T2N and people with IH, whereas the same CSF samples exhibit normal levels of hypocretin.6
  • Third, a substantial proportion of people with T2N and people with IH whose sleepiness/hypersomnia does not respond to traditional wake-promoting medications and whose CSF samples share an ability to excessively enhance GABA function respond positively to medications that are intended to suppress this enhancement (for example, flumazenil and clarithromycin).6,7
  • Fourth, results of a process called “cluster analysis” suggest that symptoms of IH (without long sleep time) and T2N are more similar than they are different.8 In cluster analysis, symptoms are compared among people while ignoring their official diagnosis, and new categories are created based on which symptoms or signs tend to occur together. In this study, three new “clusters” of disease were created:
    • People with T1N
    • People with IH with long sleep times (based on ICSD-2 criteria)
    • People with either T2N or IH without long sleep times

 

References

1          Trotti LM, Staab BA, Rye DB. Test-retest reliability of the multiple sleep latency test in narcolepsy without cataplexy and idiopathic hypersomnia. J Clin Sleep Med. 2013;9(8):789-795. PMID: 23946709.
2          Goldbart A, Peppard P, Finn L, et al. Narcolepsy and predictors of positive MSLTs in the Wisconsin Sleep Cohort. Sleep. 2014;37(6):1043-1051. PMID: 24882899.
3          Singh M, Drake CL, Roth T. The prevalence of multiple sleep-onset REM periods in a population-based sample. Sleep. 2006;29(7):890-895. PMID: 16895255.
4          Roth B. Narcolepsy & Hypersomnia. Basel, Switzerland: S. Karger Ag; 1981.
5          Vernet C, Arnulf I. Narcolepsy with long sleep time: a specific entity? Sleep. 2009;32(9):1229-1235. PMID: 19750928.
6         Trotti LM, Saini P, Koola C, LaBarbera V, Bliwise DL, Rye DB. Flumazenil for the treatment of refractory hypersomnolence: clinical experience with 153 patients. J Clin Sleep Med. 2016 [Epub ahead of print]. PMID:26149554.
7         Trotti LM, Saini P, Bliwise DL, Freeman AA, Jenkins A, Rye DB. Clarithromycin in gamma-aminobutyric acid-related hypersomnolence: a randomized crossover trial. Ann Neurol. 2015;78(3):454-65. PMID:26094838
8         Sonka K, Susta M, Billiard M. Narcolepsy with and without cataplexy, idiopathic hypersomnia with and without long sleep time: a cluster analysis. Sleep Med. 2015;16(2):225-231. PMID: 25576137.

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Complete the CoRDS Registry to Raise Funds for Research!

Hypersomnia Australia is designating September 5- 11th as Idiopathic Hypersomnia Awareness Week. Their theme this year is Improving Quality of Life.

We can’t think of a better way to improve the lives of people with Idiopathic Hypersomnia than to make a special push toward research and finding new treatments – and one day, a cure.

Throughout the month of September, YOU can have a big impact on working towards these goals. The Hypersomnia Foundation’s Board will donate $50 to the Foundation’s Restricted Research Fund for every person with hypersomnia (or a related sleep disorder) who completes the patient registry at CoRDS by September 30th!

So, by registering with CoRDS and completing the registry by the end of September, you score a double win: your completed questionnaire gives researchers another piece of the puzzle and you raise $50 towards funding research. (If you began the questionnaire but didn’t finish it, coming back to complete counts!]

Read on for more details and tips for completing the registry, and then click the CoRDS link below to get started today!

What is the Coordination of Rare Diseases at Sanford (CoRDS) registry?
“…CoRDS is a centralized international patient registry for all rare diseases.  The goal of the CoRDS registry is to connect as many patients and researchers as possible to help advance treatments and cures for rare diseases.” Be assured that your identity is completely confidential. Your personal information will be given an ID number, which will then be linked with your responses to questionnaires – no researcher or the Hypersomnia Foundation will ever be able to connect your personal information with your ID number.

Who should participate in the CoRDS hypersomnia-specific registry?
Any person diagnosed with a central disorder of hypersomnolenceidiopathic hypersomnia, narcolepsy type 1 or 2, or Kleine-Levin syndrome—can contribute valuable information. For example, researchers want to know which symptoms are more common to each of these disorders as well as those symptoms that affect everyone with one of these disorders.

If my identity is protected, how will HF know if I have completed the registry?
CoRDS will simply provide the number of registrations on of September 1st and 30th.

OK, I’m ready to make my contributions to research!!  How do I get started??
You can also complete registration via regular mail by calling CoRDS at (877) 658-9192 or sending an email to cords@sanfordhealth.org and requesting paper versions of the Registry materials. If you would like to complete it online, click the link below or copy it into your browser. (It works best with updated versions Internet Explorer, Google Chrome, or Mozilla Firefox.)

https://cordsconnect.sanfordresearch.org/BayaPES/sf/screeningForm?id=SFSFL

OK, I’m on the site – now what?

Step 1: You will be asked to answer some basic questions in a SCREENING FORM.

TIP: Once you have completed the screening form and clicked submit, on the next screen, your first name will become your user name. You will be asked to select a password and set up a security question. Please make note of these responses.

The next screen confirms that you have submitted your screening form, but you are not yet enrolled.

Step 2: : Click the button at the top of the screen that says, Start Questionnaire.

TIP:  click on the SAVE & NEXT button in the upper right-hand corner of the screen to proceed to the next set of questions. Some people had a hard time finding how to proceed.

TIP: A question requires you to calculate your age at time your symptoms began. Here is a link to an online calculator to help determine age: http://images.pearsonclinical.com/images/ageCalculator/ageCalculator.htm

Step 3 – the most important part!: The final piece is the Hypersomnia Questionnaire. Please be as complete as possible in answering these questions. Although none of the questions are required, researchers may not be able to use your responses in their work if you do not answer all of the questions.

TIP: Take your time. Take a breather. You can save the questionnaire at any point, close out and log back into the registry at a later date in (if you remember your user name and password). Even if you have clicked SUBMIT at the end of the questionnaire, you can go back at any time and update your answers.

TIP: The questions do not get harder as you go along! In other words, if you come across a couple of tough questions, don’t assume that the rest of the questions will be difficult. Some people find it easier to go through the entire questionnaire to answer all the “easy” questions first, taking note of which questions they need to come back to and complete.

TIP: Because you can move onto the next page even if you have not answered all of the questions on your current page, please review your answers or make note of those questions that you have not answered before saving and clicking to the next page.

TIP: Some of the “pages” are long. Please scroll to the bottom of each page to “submit.”

TIP: Depending on your diagnosis, you might be invited to participate in additional questionnaires from other organizations. It is entirely up to you if you complete those questionnaires.

ONCE YOU HAVE COMPLETED EVERYTHING AND CLICKED SUBMIT – CONGRATULATIONS!

You’ve made a very valuable contribution to solving the puzzle of Hypersomnia. And if you have completed your questionnaire by September 30th, you’ve also earned $50 for research!

We are most grateful to the members of the PAAC (People with hypersomnia And Advocates Council), who have completed the Registry and provided these valuable tips. If you have any questions about the enrollment process or how to complete the three steps, please contact CoRDS at (877) 658-9192 or cords@sanfordhealth.org

If you have already completed the CoRDS registry, fantastic! Please help get the word out to the hypersomnia community and encourage others to take part and complete it. If not, please enroll in the Hypersomnia Registry at CoRDS today. Your enrollment during the month of September will provide answers and simultaneously fund research. Together we can solve the puzzle of hypersomnia one piece at a time!

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Ask the Doctor

Is There a Doctor in the House?

Yes!

The Doctor Is in and Here for YOU!

The Hypersomnia Foundation is pleased to announce the launch of a new resource for readers of SomnusNooze called Ask the Doctor.

The Nuts ‘n Bolts of Ask the Doctor

What is an Ask the Doctor column?
Ask the Doctor columns, or some form thereof, typically appear in medical newsletters for public consumption and address medical matters of interest to the readership.

How will the Hypersomnia Foundation’s Ask the Doctor column work?
Readers will submit their questions to atd@hypersomniafoundation.org. We reserve the right to modify your questions so that they apply to a broad audience and for grammar and clarity.  Members of the Foundations Medical Advisory Board will answer the questions, which we will then publish in SomnusNooze.

What kinds of questions can be submitted?
Questions that will be accepted for the column are those that are of general interest to the readers. However, they must be related to one of the three central disorders of hypersomnolence: idiopathic hypersomnia, Kleine-Levin syndrome, or narcolepsy. We cannot take questions that are related to a personal diagnosis or personal treatment. In other words, questions that seek medical advice will NOT be considered.

Who are the physicians behind Ask the Doctor?
As mentioned previously, members of the Hypersomnia Foundation’s Medical Advisory Board will be responding to these questions. You can see a complete list of our Medical Advisory Board on the Hypersomnia Foundation’s website at http://www.hypersomniafoundation.org/about-us/medical-advisory-board/.

We thank the members of our Medical Advisory Board for their willingness to be available to our readers and support the Hypersomnia Foundation in yet another way.  And, we thank YOU, our readers, for making this resource as robust and helpful as possible.

Introducing New Members of the Hypersomnia Foundation Medical Advisory Board

The Board of Directors of the Hypersomnia Foundation is thrilled to announce two additions to the Medical Advisory Board: Dr. Jason Ong and Dr. Michel Lecendreux. If you attended the 2016 Beyond Sleepy Regional Conference in Denver, or watched the Livestream, you have already “met” these two sleep clinicians. This month, we will formally introduce you to Dr. Ong and, next month, to Dr. Lecendreux.

Dr. Jason Ong is an Associate Professor of Neurology at Northwestern University Feinberg School of Medicine. He received his PhD in clinical psychology from Virginia Commonwealth University and completed a fellowship in Behavioral Sleep Medicine at Stanford University Medical Center. His primary research interest involves demonstrating the effectiveness and value of behavioral treatments for sleep disorders, including cognitive-behavioral therapy and mindfulness meditation. Specifically, Dr. Ong is interested in the psychosocial impact of hypersomnia, and his lab has been developing an intervention to aid in coping with chronic hypersomnia. Additional research interests include the impact of sleep disturbance on chronic health conditions. His clinical interest is aimed at delivering empirically supported behavioral treatments to patients with sleep disorders, which complements and informs his clinical research. Dr. Ong is currently the president-elect of the Society for Behavioral Sleep Medicine.

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What’s New in the Diagnosis and Treatment of Hypersomnia in 2016?

Rather than writing our own article for this week’s edition of SomnusNooze, we are bringing you information from Dr. David Cunnington in Melbourne, Australia. Dr. Cunnington has agreed to share with us a recent post from his website (sleephub.com.au) that covers hypersomnia-related topics from the SLEEP2016 meeting in Denver. A podcast, which covers hypersomnia and other SLEEP2016-related topics, is available at sleephub.com.au/podcast (click on Sleep 2016 Update).

From Dr. Cunnington
In clinical practice it can be difficult accurately diagnosing people with hypersomnia and excessive sleepiness. Apart from narcolepsy with cataplexy, or type 1 narcolepsy, where there are distinct symptoms, and the possibility of testing orexin levels in cerebrospinal fluid, it can be hard to make an accurate diagnosis. Managing people with hypersomnia can also be difficult, as a substantial proportion of people are refractory to treatment with currently available wake-promoting medication.
Issues around diagnosing and treating hypersomnia were discussed at the recent Sleep2016 meeting in Denver, and I’ve tried to summarise some of the main issues that were covered.

Issues With Diagnosing Hypersomnia
The International Classification of Sleep Disorders 3rd Edition (ICSD-3), divides central disorders of hypersomnolence into narcolepsy type 1 (with cataplexy), narcolepsy type 2 (without cataplexy), idiopathic hypersomnia (IH) and then a range of other hypersomnias secondary to medical or psychiatric conditions or medications and the rare condition, Kleine-Levin syndrome.
The criteria for the diagnosis of IH listed in ICSD-3 are:

  • The patient has daily periods of irrepressible need to sleep or daytime lapses into sleep occurring for at least three months.
  • Cataplexy is absent.
  • A Multiple Sleep Latency Test (MSLT) performed according to standard techniques shows fewer than two sleep-onset REM periods or no sleep-onset REM periods if the REM latency on the preceding polysomnogram was less than or equal to 15 minutes.
  • The presence of at least one of the following:
    • The MSLT shows a mean sleep latency (MSL) of ≤ 8 minutes.
    • Total 24-hour sleep time is ≥ 660 minutes (typically 12–14 hours) on 24-hour polysomnographic monitoring (performed after correction of chronic sleep deprivation) or by wrist actigraphy in association with a sleep log (averaged over at least seven days with unrestricted sleep).
  • Insufficient sleep syndrome is ruled out (if deemed necessary, by lack of improvement of sleepiness after an adequate trial of increased nocturnal time in bed (preferably confirmed by at least a week of wrist actigraphy).
  • The hypersomnolence and/or MSLT findings are not better explained by another sleep disorder, other medical or psychiatric disorder, or use of drugs or medications

Whilst people with narcolepsy type 1 can usually be differentiated from these criteria, narcolepsy type 2 and hypersomnia associated with medical or psychiatric disorders can often overlap significantly with these symptoms. In addition, I often see people with most, but not all, of these symptoms. What do they have? They clearly have a problem, as they have been severely impacted by their symptoms and sleepiness. How much sleep and sleepiness is normal? Some surveys suggest around 8% of people sleep for more than 9 hours per day, and 1.6% of people report sleepiness intruding on their waking activities. One of the tests we commonly use, the MSLT, whilst helpful, can be negative in people with all the other symptoms of IH. In one study, 71% of people with long sleep times and other symptoms of IH had a mean sleep latency of > 8 minutes. In addition, unpublished data from Emory University has shown that around 50% of people with chronic fatigue syndrome meet the MSLT criteria for IH. Other studies have shown that 25% of people with hypersomnia due to psychiatric conditions have an MSL of < 8 minutes.

There really wasn’t any clear consensus on how exactly to define hypersomnias and IH. Unfortunately there are not good biological markers, and trying to make a definite diagnosis based on symptoms is fraught with difficulty. So an approach put forward by the team from Emory and that seems to make sense is to try to exclude other factors that can add to sleepiness symptoms, such as depression and circadian rhythm disorders, as well as getting a number of objective measurements of sleepiness and it’s impact. They do this by performing the below tests and assessments:

Although the team at Emory were testing cerebrospinal fluid levels of GABA potentiation in everyone with hypersomnia at one point, they are not doing this routinely at the moment and have found that people with sleepiness due to other causes such as sleep apnea can also have GABA potentiation, meaning that what they had previously described as a “somnogen” may not be specific for IH, but may in fact be a mediator of sleepiness symptoms in a range of conditions.

Options For People Refractory To Available Treatments

With regard to treatment, we often find people with IH are refectory to treatment, and some groups report around 50% of people on modafinil not persisting with treatment because of a lack of efficacy, and only 30% to 60% of people on dexamphetamine continuing with treatment. Given this, other treatments to address symptoms of sleepiness symptoms are needed.

Clarithromycin – has been used by the team at Emory who published their research in Annals of Neurology in 2015. In that study, they treated 23 people with clarithromycin, and they reported the results on 20 cases using clarithromycin 500 mg twice daily. They did not show changes in reaction time but did show subjective measures of sleepiness were significantly improved. People did get gastrointestinal side effects and changes in taste, so it was not well blinded, so it is a little hard to know exactly how to interpret that, but, nonetheless, this may be a helpful agent.

Flumazenil – has also been used at Emory. At the meeting, they presented their experience with 153 patients they treated between 2013 and early 2015. They administered flumazenil as sublingual lozenges or transcutaneous lotion. Overall, 63% of people felt flumazenil had helped their sleepiness, dropping the mean Epworth Sleepiness Score in the group from 15 to 10.3, and 39% of people remained on treatment at the end of the observation period, which was an average of 7.8 months. Interestingly, one of the predictors of clinical response was the presence of significant sleep inertia, with 72% of those with sleep inertia getting a good response versus 42% of those without sleep inertia.

Sodium oxybate (Xyrem) – is another treatment that was discussed for sleep inertia, which can be one of the most difficult symptoms to manage in people I see with hypersomnias. Whilst Xyrem is most commonly used in treating narcolepsy, Isabelle Arnulf from Paris has treated a number of people with IH with sodium oxybate. Their results, published in Sleep Medicine in 2016, showed that it can reduce morning sleep inertia and probably had a greater effect on this than on overall sleepiness symptoms.

JZP-110 – is a compound being developed by Jazz Pharmaceuticals that has both dopaminergic and noradrenergic activity. In two small clinical trials with a total of 126 subjects, it has been shown to increase the MSL on a Maintenance of Wakefulness Test by 8.9 minutes. This may not sound like much, but, in comparison, in the sentinel modafinil studies, MSL increased by 2.3 minutes, and, for dexamphetamine, there is a 5.6-minute change. So, at this stage, results for JZP-110 look promising, and it appears to be significantly more effective than modafinil or dexamphetamine. Larger phase 3 trials, aiming to enroll more than 800 subjects with sleepiness started in mid 2015, and results are expected at the end of 2016.

Non-drug treatments – There is increasing acknowledgement that medications only partially address symptoms of sleepiness and that there is a role for psychological and behavioural treatments to reduce the impact of symptoms in people with hypersomnias and other conditions that cause sleepiness. For people with narcolepsy with cataplexy, napping has long been used as a strategy, but for people with IH, napping as a strategy often doesn’t work, as they can’t have short naps and have significant sleep inertia on waking from naps. Research on behavioural strategies to help manage symptoms of sleepiness is now being undertaken, and I had a chance to talk with Assistant Professor Jason Ong about it at the meeting in the following interview: Sleep Talk: Episode 8 – Sleep 2016 Update.

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