Idiopathic Hypersomnia: What does it mean? Perspective of a suffering patient.

By:  msaubrey-aka-ahyoka  •  last year  •  10 comments

Idiopathic Hypersomnia: What does it mean? Perspective of a suffering patient.
...“it steals too much of who I am and who I want to be.” You support IH research because “it’s a daily battle…to get things done” and “I’m sleeping my life away.”

“You’re lazy.” “You had 9 hours of sleep! How are you tired”? “What’s wrong? Are you depressed”? “Are you really sleeping right now”? “You never come out.” “Am I boring you”? “I wish I had that problem.” “…you mean that you can’t sleep at night”?

The above are things that I’ve heard all my life. The reality is that people simply don’t get it. The only way anyone might understand how I feel without my “awake pill” [Nuvigil (Armodafinil) or Provigil (Modafinil)] is if they (the “normal” person) takes a sleeping pill right after they wake up in the morning and then do all of the things they need to do throughout the day; then, as soon as that sleeping pill starts to wears off… take another one. Then… do that day in and day out for 30 years while having people telling them they’re lazy and act like the sleepy one is the a-hole for needing to sleep.

If you’ve never fallen asleep while driving, while working, while in the middle of a conversation with someone and even once during sex for a brief moment, not been able to awaken from an alarm even after having 9+ hours of sleep, and tried everything legal to remain awake for 10 hours a day [for work and commuting to and from], then you won’t get it. Hypersomnia is rare and is not completely understood. People understand more about Narcolepsy than they do Hypersomnia; however, the understanding most people have regarding Narcolepsy is from movies, which paints a broad generalized notion and that’s about it. Both Hypersomnia and Narcolepsy are disorders that make a person “excessively sleepy,” but there are more differences than similarities. More often than not though, it’s just easier to associate the two when explaining it to people that don’t really care about the differences.

The average adult on an average day requires about 6-9 hours of solid sleep (25-38% of a 24 hour day) meaning awake 15-18 hours a day and usually takes about 20-30 minutes to fall asleep; that is a normal sleep pattern. For an adult dealing with Hypersomnia on the other hand, requires 9-15 hours of solid sleep (38-63% of a 24 hour day) and a 2-4 hour nap somewhere in the 9-15 hours remaining; therefore, upwards of 19 hours of sleep total and my Multiple Sleep Latency Test (MSLT) was an average of 4 minute latency (amount of minutes it took for me to fall asleep) with the shortest time being 30 seconds. Granted, I don’t know any adult that has the opportunity to sleep upwards of 19 hours including myself. I work full time. I have a husband and kids.

Let me explain the MSLT. I wake up at 7am, make my way to the sleep specialist office, they hook up some stuff on my head and I watch tv or read or something quietly (Suduko, Crosswords, etc.) for two hours. Then, they tell me to nap. After 20 minutes, they wake me up [many people would never even fall asleep in that time, but that’s normal]. Then I’m up for another 2 hours and nap again for 20 min. There are 5 naps. Only my first nap took more than 2 min. to fall asleep.

I’d have to say that the most frustrating thing when talking to people about my struggles, is when they say, “I wish I had that problem,” when referring to how fast I fall asleep. Normal people don’t understand what it’s like to fall asleep at a red light because it lasts more than 30 seconds. Normal people don’t understand what it feels like to find out you just ran a red light and nearly hit an elder lady because you fell asleep while driving home from work; I was 17 years old when that happened and my job was only 1.5 miles from home. I was less than a half a mile from where I worked when it happened. I only awoke when the police officer turned on the siren. He followed me home to make sure I got there safely without writing me a ticket. So, yes I get frustrated when people say that they wish they could fall asleep like me.

Caffiene and sugar do not have the same effects for me that they do on a “normal” person. I’ve never had the shakes from too much caffiene. I’ve never had an elevated BP or heart rate from meds or caffiene. I can drink coffee [really strong coffee] up to about 8pm and still go to bed and be asleep by 10pm. I get frustrated with commentary and suggestions from people sometimes.


So… what sleepy issue ails you? Can’t sleep [Insomnia]? Restless legs? Narcolepsy? Apnea?


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1  Kavika     last year

Hi ahyoka, good to see you back. 

When you post an article you have to make a comment before it will show up on the front page of active articles. 

I don't have any of the sleep problems but this is the first time that I've heard of EDS. What a difficult situation you have with that...

MsAubrey (aka Ahyoka)
1.1  author  MsAubrey (aka Ahyoka)  replied to  Kavika @1    last year

Thanks for the heads up! I've dealt with this my entire life. My mom was scared sh*tless when I was only about 10 months old and slept 22 hours straight. She kept checking on me, making sure I was still breathing. It took until I was almost 30 years old for someone to listen and send me to a sleep specialist. I've been seeing this sleep specialist for 10 years now. I'm his only Hypersomnia patient.

Perrie Halpern R.A.
2  Perrie Halpern R.A.    last year

Hello ahyoka!

Good to see you old friend. 

So you ask if anyone has a sleep disorder..... Hello! 

I have had since my early 30's what is called Nocturnal Myoclonus. It means I have large involuntary movements as I approach stage 3 sleep that prevents me from going into REM. No REM no real sleep. So in a way, we both have the same problem... we are constantly tired. 

I am on medication for this for a very long time, since I need to sleep and because I was beating up my hubby in bed with my wild arm and leg movements, so he was not sleeping either. 

Good thing that I need about 6 hours of sleep to function. 

Buzz of the Orient
2.1  Buzz of the Orient  replied to  Perrie Halpern R.A. @2    last year

I have a sleep disorder. I wake up every hour or two and have a restless time getting back to sleep.  At my age, my bladder is an alarm clock.

Perrie Halpern R.A.
2.1.1  Perrie Halpern R.A.  replied to  Buzz of the Orient @2.1    last year


Odd thing but my dad and my father in law seem to have the same condition. LOL!

2.1.2  TTGA  replied to  Perrie Halpern R.A. @2.1.1    last year
Odd thing but my dad and my father in law seem to have the same condition. LOL!

That makes four of us.  I've found that the bladder alarm is remorselessly accurate......and set about a half hour before the other alarm rings.

2.1.3  luther28  replied to  TTGA @2.1.2    last year

Five, I think the last time I managed to make it through the night, I was four.

MsAubrey (aka Ahyoka)
2.2  author  MsAubrey (aka Ahyoka)  replied to  Perrie Halpern R.A. @2    last year


That's one I hadn't heard of yet!  My ex suffered from night-terrors, so I would get beat up [until I started sleeping in another room], but his occurred during REM sleep and I found that it happened far more frequently when he pushed himself to stay awake [usually playing a video game].

3  luther28    last year

You have my sympathy, as I suffer the opposite.

Six straight hours is great but seldom achieved for various reasons. Perhaps we can meet somewhere between six and twenty two hours.

MsAubrey (aka Ahyoka)
3.1  author  MsAubrey (aka Ahyoka)  replied to  luther28 @3    last year

My husband has trouble sleeping more than 4-5 hours solid.  Then, when he is sleeping, his apnea is so bad sometimes that it scares me. 


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