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