Hypersomnia update: beyond subject one

It’s not sleep apnea. It’s not narcolepsy. Hypersomnia is a different kind of sleep disorder. There’s even an “apples and oranges” T-shirt (see below) that makes that point.

This weekend, your correspondent attended a patient-organized Living with Hypersomnia conference. One of the main purposes of the conference was to update sufferers and supporters on the state of research at Emory and elsewhere, but there was also a lot of community building – hence the T-shirts.

The story of how sleep took over one young lawyer’s life, and how her life was then transformed by flumazenil, a scarce antidote to sleeping pills she was not taking, has received plenty of attention.

Now an increasing number of people are emerging who have a condition similar to Anna Sumner’s, and several questions need answers.

  1. How many people have this type of hypersomnia?
  2. What is the mysterious GABA-enhancing “sleepy stuff” in their brains?
  3. What’s the best way to treat them?
LWH1

Although the conference gathered a group of self-described “sleepyheads” who find conventional wake-promoting treatments such as amphetamines and modafinil ineffective, I did not observe anyone dozing off.

1 and 2 are still open questions, but there has been some progress on 3. At the conference, three Emory researchers — David Rye, Lynn Trotti and Andrew Jenkins — as well as a patient panel provided updates.

Previously, one of the obstacles was the scarcity of flumazenil, and that situation seems to have eased. Additional sources of flumazenil became available and it can be packaged by a compounding pharmacy. Dozens of people are being treated with flumazenil “off label”, almost all of them paying out of pocket for it.

A case report on a male hypersomnia patient from Western Australia (one of the conference organizers), who is being treated with flumazenil subcutaneously, was recently published in Journal of Psychopharmacology. Still, long-term safety data for flumazenil, which is FDA-approved only as a one-time antidote for benzodiazepines, is lacking.

Neurologist Lynn Trotti described a four-part checklist Emory doctors use for prescribing flumazenil in hypersomnia: at least two other drugs don’t work, the hypersomnia isn’t caused by something else, spinal tap reveals the presence of GABA-enhancing sleepy stuff, and hypersomnia interferes substantially with job/family duties.

In addition, Emory researchers have discovered that the antibiotic clarithromycin has wake-promoting properties similar to that of flumazenil, at least in some people. Their review of hypersomnia patients’ open-label experience with clarithromycin was recently published. They found that clarithromycin works well for many, but side effects such as an altered sense of taste (“like sucking on quarters 24-7,” according to Trotti) and stomach upset are common. And it’s an antibiotic, so chronic use may be also ill-advised. More clinical data are coming, Trotti says.

 

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Posted on by Quinn Eastman in Neuro 6 Comments

About the author

Quinn Eastman

Science Writer, Research Communications qeastma@emory.edu 404-727-7829 Office

6 Responses to Hypersomnia update: beyond subject one

  1. Pamela Patterson

    I have idiopathic hypersomnia. Also, central apnea. Although I do not show an increase in carbon dioxide, or a decrease in oxygen. My diagnosis came from the iniversity of Washington.
    I cannot describe how hard this is. In order to soldier on, I take 120 mg of dextroamphetamines a day plus tons of teen tea. Because, I get terrible hives from my dex, I also take chlortrimtron with my dex.I do everything I can to replenish the B vitamins and minerals my dex robs me of. By some miracle the awful spikes in my blood pressure are controlled with antihistamines. (I tried 11 different blood pressure meds. 3 types. None of them was even remotely acceptable.) How can I get my doctor to prescribe flumazenil? What do I have to show her, or tell her, in order for her to at least let me try it? I have decent medical insurance and compounding pharmacies nearby. Thank you. I can’t believe how hard it is to make any progress toward controlling my hypersomnia.

  2. Quinn Eastman

    Pamela, the Emory Sleep Center has some information on “Hypersomnia evaluation: what to expect” that you may find useful: http://www.emoryhealthcare.org/sleep/sleep-disorders/evaluation-expectations.html QE

  3. mariana

    Hi,I´m writin from Argentina to ask for help concerning my narcolepsy/hypersomnia diagnosis. I eas first diagnosed with narcolepsy in 2009, after suffering from symptoms for 10 years. Last year, after a new consultation with a different neurologyst, I eas diagnosed with idiophatic hypersomnia. Still, I struggle with my everyday life and don´t even know what I have. What can I do? Thanks a million.

  4. Quinn Eastman

    I’m uncomfortable giving medical advice by blog, but I can send you medical research articles by email. Perhaps that could help you discuss options with a neurologist or sleep specialist. qeastma AT emory.edu

  5. Sam Manickam

    A week ago, 16 year old girl consulted me after persuasion from her parents for her poor academic performance and impulse control. Both the parents being teacher educators considered her to be having some psychological problem. She was found to be having hypersomnia and reported that when she wakes up in the classroom, her friends and teachers would be making fun of her. She reported that they say that irrespective of their pinching and tapping she does not respond. I saw her school notebooks and it clear showed her writing going like the ‘EEG waves” from a legible handwriting. With much persuasion I had to send her back to the Neurologist who had missed her problem. Right now after sleep study, the same neurologist has diagnosed her as having ‘ Narcolepsy’ and when the parents consulted me again with more apprehensions about treatment and prognosis, I suggested to get a second opinion. She also has uncontrollable anger outbursts during which time she breaks objects ( remote controls, mobile phones) and later regrets for the same.Can impulse control disorder coexist? What are the other co-morbid conditions?Could you please send me other research articles so that the parents and the girl can be appropriately guided and to learn any other behavioural interventions that are specific to learning related issues?

  6. Quinn Eastman

    What you describe sounds like a challenge of distinguishing sleep issues from behavior issues, as well as a sleep disorder diagnosis problem. Does the girl ever collapse into sleep (cataplexy) because of the anger outbursts?

    Here’s a recent “consensus statement” on narcolepsy _without_ cataplexy diagnosis
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4015377/

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