Hypersomnia | Excessive Daytime Sleepiness | Sleep Disorders
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I'm tired of Hypersomnia!
After years of constant exhaustion and countless naps that don't help a bit, I finally got a doctor to take me serious. I went to a neurologist and had a sleep study done. [The picture on the left is me at the sleep study with wires glued to my head... cute huh?]
The doctor diagnosed me with recurrent hypersomnia and said I have a little trouble breathing at night but not enough to say I have apnea or prescribe a cpap.
Isn't that great? I went to the doctor because I'm tired all the time. They did tons of test and told me that... I'm tired all the time. Yeh...thanks!
Ahh but they gave me a name for it and a prescription... that's something! Now I can obsessively research and figure out how to stay awake... or at least procrastinate my homework a little longer...
I'll share my research here.
The doctor diagnosed me with recurrent hypersomnia and said I have a little trouble breathing at night but not enough to say I have apnea or prescribe a cpap.
Isn't that great? I went to the doctor because I'm tired all the time. They did tons of test and told me that... I'm tired all the time. Yeh...thanks!
Ahh but they gave me a name for it and a prescription... that's something! Now I can obsessively research and figure out how to stay awake... or at least procrastinate my homework a little longer...
I'll share my research here.
Contents at a Glance
Definition
What is Hypersomnia anyway?
Hypersomnia:
[That's pronounced... hy-per-som-ni-a-zzzzzzzzz... OK not really, wow what a terrible joke. Is this whole site going to be like that? You can only hope not.]
Answers.com says:
"Hypersomnia refers to a set of related disorders that involve excessive daytime sleepiness."
WebMD says:
"Hypersomnia, or excessive sleepiness, is a condition in which a person has trouble staying awake during the day. People who have hypersomnia can fall asleep at any time; for instance, at work or while they are driving. They may also have other sleep-related problems, including a lack of energy and trouble thinking clearly."
My Notes:
Basically hypersomniacs are tired all day and naps don't help.... yawn! Well, they aren't refreshing... but they do help in that whole not-being-awake thing.
[That's pronounced... hy-per-som-ni-a-zzzzzzzzz... OK not really, wow what a terrible joke. Is this whole site going to be like that? You can only hope not.]
Answers.com says:
"Hypersomnia refers to a set of related disorders that involve excessive daytime sleepiness."
WebMD says:
"Hypersomnia, or excessive sleepiness, is a condition in which a person has trouble staying awake during the day. People who have hypersomnia can fall asleep at any time; for instance, at work or while they are driving. They may also have other sleep-related problems, including a lack of energy and trouble thinking clearly."
My Notes:
Basically hypersomniacs are tired all day and naps don't help.... yawn! Well, they aren't refreshing... but they do help in that whole not-being-awake thing.
Kinds of Hypersomnia
They aren't all the same...
- Excessive daytime sleepiness (EDS)
"Characterized by persistent sleepiness, and often a general lack of energy, even after apparently adequate night time sleep."
aka Idiopathic "Hypersomnia without long sleep" - Prolonged nighttime sleep
aka "Idiopathic Hypersomnia with long sleep" - Kleine-Levin syndrome
"People with Kleine-Levin syndrome have symptoms that differ from the symptoms of other forms of hypersomnia. These people may sleep for 18 or more hours a day. In addition, they are often irritable, uninhibited, and make indiscriminate sexual advances. People with Kleine-Levin syndrome often eat uncontrollably and rapidly gain weight, unlike people with other forms of hypersomnia. This form of recurrent hypersomnia is very rare." - minddisorders.com
Symptoms
There are different kinds of Hypersomnia... and people experience different symptoms in addition to excessive daytime sleepiness. Here are a few...
- Long sleep periods. (For one kind of hypersomnia)
- Excessive sleepiness or excessively deep sleep.
- The onset is insidious (gradually, so you are not aware of it at first).
- Dizziness
- Cold hands and feet
- Depression symptoms
- Headaches, which may be Migrainous in quality.
- Fainting Episodes.
- Hypnagogic Hallucinations and Sleep Paralysis may be encountered occasionally
- Trouble thinking clearly
- Lack of energy
- Not doing the dishes or laundry regularly... What? I'm so going to use this diagnosis as my excuse for a messy house!
About Hypersomnia
All of those informational websites...
- Sleepdisordersguide.com: Excessive Sleepiness | Hypersomnia | Excessive Daytime Sleepiness
- Excessive sleepiness is also known as hypersomnia. A person with excessive sleepiness may sleep up to twelve hours a night, and still need frequent daytime naps. Discover the treatment techniques for excessive sleepiness...
- Answers.com: Hypersomnia: Definition
- hypersomnia ... Excessive sleepiness.
- Psychnet-uk.com: Hypersomnia
- Diagnostic criteria for Hypersomnia
- eMedicine Psychiatry: Primary Hypersomnia
- Overview: In 1966, William Dement proposed that patients with excessive daytime sleepiness but without cataplexy, sleep paralysis, or sleep-onset rapid eye movement (REM) should not be considered narcoleptic. In 1972, Roth et al described a type of ...
- Psychology Today's Diagnosis Dictionary: Hypersomnia
- Psychology Today's Diagnosis Dictionary, definitive resource for psychological terms and info, Hypersomnia
- Sleepeducation.com: Idiopathic Hypersomnia with long sleep
- How do I know if I have it?
- Sleepeducation.com: Idiopathic Hypersomnia without long sleep
- Idiopathic hypersomnia without long sleep time is one of the disorders of severe sleepiness. It causes you to have disabling daytime sleepiness. This occurs despite a normal or an increased nightly sleep time. Your nightly sleep time ranges from 8 to10 hours.
- Sleepdex.org: Hypersomnia
- Hypersomnia is the opposite of insomnia...
Research Resources
Unsatisfied with the simple stuff? Do some serious research.
- Hypersomnia books and articles at Amazon
- If you really want to do some research, Amazon has several books and downloads available.
- Google Scholar: Hypersomnia
- Articles about Hypersomnia listed on Google Scholar. Many of these require subscriptions or purchase.
- Sleep disorders and sleep deprivation. - Google Book Search
- Sleep disorders and sleep deprivation By Harvey R. Colten, Bruce M. Altevogt, Institute of Medicine (U.S.). Committee on Sleep Medicine and Research
- Quality of Life in Excessive Daytime Sleepiness and Hypersomnia ... -Google Book Search
- Sleep and Quality of Life in Clinical Medicine By Joris C. Verster, S. R. Pandi-Perumal, David L. Streiner
Treatments
I'll add more treatments as I find them.... feel free to leave suggestions in the guest book.
- PROVIGIL - What the doctor prescribed to me.
- Official site of PROVIGIL (modafinil), a prescription medicine used to improve wakefulness in adults who experience excessive sleepiness (ES) due to one of the following diagnosed sleep disorders: obstructive sleep apnea (OSA), shift work sleep disorder, also known as shift work disorder (SWD),
- Amazon.com: The Snore Wizard
- My sleep study showed several "elevated respiratory effort related arousals." This wasn't bad enough for a CPAP but my doctor did recommend I go to the dentist to get a Dental Snoring Device made. Similar [and much cheaper] devices are available online. Here's one of them.
- Dental Appliances
- There are sooo many different dental snoring device options... My insurance won't cover one made by the dentist so I have to find an affordable alternative.
Tests
Do you have hypersomnia? How tired are you?
- The Epworth Sleepiness Scale
- How likely are you to doze off or fall asleep in the following situations, in contrast to feeling just tired? This refers to your usual way of life in recent times. Even if you have not done some of these things recently try to work out how they would have affected you.
- Stanford Sleepiness Scale
- This is a quick way to assess how alert you are feeling. If it is during the day when you go about your business, ideally you would want a rating of a one. Take into account that most people have two peak times of alertness daily, at about 9 a.m. and 9 p.m. Alertness wane
- Karolinska sleepiness scale
- You'll have to get the book:
Akerstedt T. Subjective and objective sleepiness in the active individual. International Journal of Neuroscience 1990; 52: 29-37. - Sleep Studies
- Sleep studies are tests that watch what happens to your body during sleep. The studies are done to find out what is causing your sleep problems.
- Sleep Hygiene Test
- Online scored Sleep Hygiene Test. Evaluates whether bedtime habits are affecting your ability to get a good night's sleep.Includes detailed interpretation of results and advice.
Support Groups
You're Not Alone
- View Forum - Idiopathic Hypersomnia
- Sleep disorder community providing authoritative sleep information and live sleep disorder support: news, chat rooms, message boards, and articles
Sleep Tips and Tools
Make sure you're getting the best sleep you can!
- Tips for A Good Night's Sleep
- Article on psychcentral.com by Michael Bengston, M.D.
- How to get better sleep
- Best practices for sleep hygiene.
- Sleep Diaries: How to Keep a Sleep Log
- Do you have trouble sleeping? Read on to learn how using a sleep diary to record your sleep history may help you beat insomnia.
- YawnLog.com
- Yawnlog lets you and your friends track and share your sleep.
- Healthwise Sleep Diary PDF
- Sleep Diary PDF
- How to use a sleep diary
- Learn how to track your sleep patterns with a diary to help you discover your sleep habits and understand your sleep problems.
- Sleepiness Diary PDF
- "Many people struggle to stay awake during the day, when they need to be fully alert to perform well. NSF's new Sleepiness Diary can help you keep track of your sleepiness patterns and compare them with how long you've slept the night before and how often you battle sleepiness with naps or caffeine and other stimulants."
My Sleepy Story
I'm going to throw personal updates here...
I tried the Provigil twice. 200mg each morning. It didn't help at all. It just made me feel like staring into space all day. I was dizzy and tingly when I stood up. Not good. Maybe it was just an interaction with my other prescriptions.
Tried taking 400mg of Provigil in the morning... definitely kept me awake. All night. Now I'm really exhausted.
---
I wasn't able to get the Provigil approved before my insurance ran out. So I'm not sure if it helps or not.
Yerba Mate seems to help. I tried drinking about 4 cups a day. That definitely helped. Yesterday I bought some 500mg capsules. So far, that seems helpful too. I haven't researched Yerba Mate, I just drank some and happened to notice that it helps. I'll provide more info and resources later... until then... Google!
Tried taking 400mg of Provigil in the morning... definitely kept me awake. All night. Now I'm really exhausted.
---
I wasn't able to get the Provigil approved before my insurance ran out. So I'm not sure if it helps or not.
Yerba Mate seems to help. I tried drinking about 4 cups a day. That definitely helped. Yesterday I bought some 500mg capsules. So far, that seems helpful too. I haven't researched Yerba Mate, I just drank some and happened to notice that it helps. I'll provide more info and resources later... until then... Google!
- Sleep Study Slide Show
- My blog post about my sleep study. With goofy photos.
- I'm tired of Hypersomnia!: GentleWhisper.com - By Amy Maxwell
- My blog post after getting the sleep study results
Tired Poetry
Provigil costs $390 for 30 pills.
Doctor says, "take two a day."
Insurance doesn't want to pay.
I lose coverage on Sunday.
Not sure it helps anyway.
Just for Fun
Ever notice how sometimes when you're really tired, things seem funnier? Yeh that has nothing to do with this link list, I just thought I'd ask. Here are some random sleep related links just for fun.
- Hypersomnia by Masha Qrella
- A song about Hypersomnia? Love it!
Reader Feedback
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- 4th dwarf 4th dwarf Oct 5, 2009 @ 2:27 pm
- Thaks so much for your humorous posts. I was feeling pretty bad about IH becasue it seems like a catch-all diagnosis and didn't have an official and scary name like Obstructive Sleep Apnea or Narcolepsy. I'm in my first days of this diagnosis and it didn't occur to me there would be supportive forums. The sleep sites are all about "getting a good night's sleep" and tell me to not drink caffine before bed. Are you kidding me? That is so not my problem. I want to stop missing entire days of my life. I want roommates and family to not feel they have to make sure I'm "still breathing." I don't want to have to actually look at the little light on my alarm clock that tells me if it's a.m. or p.m. I'm on day 2 of a NuVigil sample and I hope it works. I hope my insurance pays for it.
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- mariebmel mariebmel Jun 26, 2009 @ 10:42 pm
- Thank you so much for starting this support group. After 13 years of misdiagnosis (you are just depressed, you eat too many carbs, you are lazy, you have sleep apnea) I found out that my sleep apnea is actually very mild and probably not the cause of my sleepiness (so glad they told me that after I spent over $1000 on the CPAP) and that my real problem is idiopathic hypersomnia with long sleep. I sleep about 15 hours a day. It has affected every aspect of my life. I don't go much of anywhere anymore because I just don't have the energy. May try Provigil. Keep up this group!
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- sleepyhead sleepyhead Jun 16, 2009 @ 11:58 am
- Great blog. I am going back to my primary doctor on Monday for a follow up to a sleep study I did 2 weeks ago. She referred me there with the diagnosis of hypersomnia. For the past year and a half I have been progressively feeling more and more tired throughout the day. Over the past couple of months I have almost fallen asleep on the road and had to go to my car to nap to avoid falling asleep at work. I never feel quite refreshed from sleeping/napping either. Two years ago I was anxious to get up and get the day going and was running 1/2 marathons 1-2 times a year. Today its just hard to get motivated to keep up a minimal exercise program b/c I am so tired. I hope she gives me some medication that can help. A few years ago I recreationally tried an Adderall that my friend had and I remember feeling focused and alert for the entire day. Maybe a stimulant will work for me.
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- Sherribaby Sherribaby Jun 11, 2009 @ 5:21 pm
- Boy can I relate! I tried Provigil - it did nothing. Thinking about nasal surgery...don't know if it will work. Good luck!
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- davidstillwagon davidstillwagon May 29, 2009 @ 2:58 pm
- good, informative lens I'll give it a 5
by amymaxwell
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