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 their friends, family and peers;
- Provide support resources to those suffering from Hypersomnia so they can improve their quality of life; and
- Promote Hypersomnia to the International Medical Research Community in the hope of the development of better treatments and eventually a long-term cure to Hypersomnia.
IMPORTANT: Everything on this website is simply our opinions. If you do anything we talk about on this website without the supervision of a licensed medical doctor, you do so at your own risk. This information is presented for educational purposes only.
The current administrators of the Facebook page are:
Alyssa – Pennsylvania, United States
Alyssa is a single mom and social worker. Exhausting in itself, but the tiredness started many years prior. She remembers being 11, turning on the shower so her mom would think she was washing up, then lean on the wall and fall asleep. Her primary care physician never really took her symptoms seriously, but in 2007, when she started seeing a neurologist due to a seizure disorder, she was sent for a sleep study and diagnosed with IH. Nuvigil helped an enormous amount, but started losing its potency about a year ago. Her doctor added stimulants, but they didn’t help.
She’s managed to work full-time due to jobs where she 1) did home visits and could pull over and sleep in her care, 2) had an office and could close the door, or 3) had a cubicle where she could sit with her back to the corridor and look like she was thinking really hard about something on the computer screen rather than sleeping. Another trick she learned was to make her phone buzz so she could “go take a call” during meetings. She only snored at work once!
Alyssa loves doing crafty-type things: cross stitch, scrapbooking, and such. She also likes to bake which, along with the exhaustion, could explain the weight gain over the last couple of years. She particularly likes doing these things with her daughter, who is the most fun person she’s ever known. She’s also looking forward to getting hitched in the fall to a guy who is more than willing to help out when she really needs to take nap.
Amy – London, United Kingdom
Amy is an artist/illustrator living in London, UK. After suffering with symptoms for a number of years she was diagnosed with Idiopathic Hypersomnia in 2008 aged 20, and she has been active in the IH Facebook groups ever since then. In more wakeful moments she loves going for long walks, plein air painting and in 2013 hopes to illustrate her first children’s book. Her boyfriend’s parents have two gorgeous Airedale Terriers, Cooper and Teddy, and she makes plans to steal them during every visit.
David – United States
David is a father and licensed hearing aid specialist. He lives in Oregon 2006 with his wife and 1 year old son. David started seeking treatment for his excessive daytime sleepiness (EDS) when he was about 28. He was driving 30~ minutes to work and having trouble staying awake at the wheel. David started with his primary care doctor who recommended a sleep study and follow up with an ear, nose, and throat doctor (ENT).
The ENT said that David could not breath due to his nose structure and that he needed surgery to hollow out his sinuses and that would make it so he could breath at night and help him stay awake during the day. David asked what had changed that he was falling asleep now and the doctor told him that since David was getting closer to 30 that his body required better sleep and that it was something that David had probably had all his life but that he was just old now. The surgery did not have any effect on David’s EDS and he was told that he needed surgery on his throat, it was not covered by insurance so David opted to skip it. The sleep study prior to surgery showed that David snored and had mild sleep apnea but did not qualify for CPAP. So David went back to what he was used to doing, abusing caffeine and sleeping every second that he could often 10-12 hours a day and still woke up feeling like a truck had driven over him.
Over the next 6 years David tried everything that he could think of to feel better. He tried exercise, eating better, D vitamins, and thinking that it was just job stress he changed jobs regularly each time stepping down from the manager roles he had had in the past. Nothing he did ever changed the severe EDS that always threatened to pull him under while driving, watching tv, reading, or even sitting at a red light.
In 2009 he got new insurance and they wanted him to do a sleep study again. After two sleep studies he was given a CPAP machine to use. After a few months of no benefit the doctors recommended a multiple sleep latency test (MSLT). With a score of 3:30 on five naps David was diagnosed with idiopathic hypersomnia (IH) in 2012. David has tried Ritalin, Rrovigil, Xyrem and each has caused many side effects and not much benefit.
David is hopeful that a new form of treatment will be found that will allow the sufferers of IH to resume a normal life.
Lloydy – Western Australia, Australia
Lloyd is a bit of a late comer to the world of Idiopathic Hypersomnia. Although he has always been more tired than normal, especially as a teenager, he sorta just got on with things until his life came to a screaming halt in 2012. Originally told he had a “virus” and to “rest” but after taking a break from work and sleeping most of the day away for over six months he realised something was really wrong. The diagnosis was first suggested towards the end of 2012 and was only confirmed in May, 2013.
Driven by his dissatisfaction with his loss of quality of life Lloyd has tried pretty much every treatment that exists for IH, including the more experimental clarithromycin and flumazenil. His favourite so far is the flumazenil, with Armodafinil in second place. Lloyd has documented his experience with the different medicines on the Idiopathic Hypersomnia YouTube Channel.
If Lloyd weren’t sleeping he would be traveling the world with his Canon 7D, riding motorbikes a little too fast and continuing to train for endurance triathlons. It’s his greatest hope that one day a treatment will exist that allows sufferers with Idiopathic Hypersomnia to have a normal quality of life and chase their dreams like most of the rest of the world can.
Rainbow – British Columbia, Canada
Rainbow is a mother and former dietitian who lives with IH on the beautiful western coast of Canada. She was diagnosed in 2011 and the MSLT done in 2013 but remembers trying to stay awake through high school and 8 non-consecutive years of post secondary education. When she became a single mother, working full time, the sleepiness overwhelmed her system and she developed Chronic Fatigue Syndrome on top of her chronic pain so she took a medical leave and has been navigating the private disability insurance system in Canada with her union backing her up.
Rainbow was not diagnosed for 20 years! Her vivid dreams, hypnagogia and sleep paralysis were not understood as a symptom of a neurological disorder and were called “lucid dreaming” as if it was perfectly normal. When IH starts during adolescence, it is difficult to sort out if a teen has got a medical problem or is just sleepy because of late nights. Then the teen is told that s/he is lazy and needs more sleep. Fighting this label of “lazy,” Rainbow went underground with her disorder by living alone and working part-time and sleeping a lot. She sleeps about 8 to 11 hours a night and has sleep inertia until about 10-11 am and her occasional daytime naps are long and unrefreshing. She is still unsure whether she has cataplexy which is considered Narcoleptic because if she is startled (i.e. screaming children) her knees give out and she falls. Modafinil (Provigil) has been the most helpful.
Her hobby is composting and gardening and eats vegetarian non-processed food. She and her son foster feral kittens through rescue group, though her 2 adopted cats don’t like it so she will never be a cat lady! She is on the PAC of her son’s school and edited a community cookbook this year. She doesn’t have enough energy for much more right now.
Sandy – Missouri, United States
Sandy, an International Patent Paralegal, met her Hubs of 30 years in high school & has the typical up/down love you/you might want to go fishing before I shoot you kind of marriage. She has 2 kids (14 & 20) who couldn’t be more opposites with the exception of making their parents very proud.
Sandy was diagnosed with IH about 7 years ago but her current doc says Narcolepsy. All she know is she is exhausted. It started as a teenager after a bout with mono & there’s been a steady decline after a stint with shingles a couple Christmases ago. After a sleep test in 2008, was prescribed Dexedrine which worked ok. Sandy had gone so long not knowing what normal felt like anything beat how she had been living. As Dexedrine became unavailable, tried Provigil = nothing; Nuvigil = migraines; currently on Adderall IR / ER combo. This combo allows her to work and, if she times her meds right, attend the important things in her family’s lives. Sandy prefers not to live this way, but feels fortunate to still be working & enjoying some good times.
Although this illness has made it difficult, Sandy strives every day to live each moment as it comes with a sense of humor and grace & to not let the illness win. Whenever she can get out of bed or go to work, be Mom or get dishes done, those are her small victories in the war on IH/Narcolepsy.
Sandy doesn’t have all the answers & can’t always comprehend the medical jargon that’s tossed around but she knows what guilt, tired & disappointment feels like & she will do what she can to help you navigate through all that to your own victory lane.
For all inquiries please join us on Facebook:
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This post is also available in: French