Idiopathic Hypersomnia: A Personal Account

Hello Darling Otherbeasts, I'm so glad you're joining me. It's awesome to have you.

Because y'all are awesome.

Back in September of 2009 my neurologist sent me off to have a sleep study done to see if it had any connection to my seizure disorder, such as sleep apnea. Well, the sleep study went just fine but an unexpected diagnosis came out of it: Idiopathic Hypersomnia. I had never even heard of it before.

He would have found the cause in only 50 minutes.

Upon doing research some of the valuable information I found came from PubMed Health which defined Idiopathic Hypersomnia as, "[...] sleeping too much (hypersomnia) without an obvious cause. It is different from narcolepsy, because idiopathic hypersomnia does not involve suddenly falling asleep or losing muscle control due to strong emotions (cataplexy)."

 Really?

That was coupled with Wikipedia's information which says, "Hypersomnia disorder characterized by excessive sleepiness, extended sleep time in a 24-hour cycle, and the inability to achieve the feeling of refreshment that usually comes from sleep."

They did say.

So, the easiest and most simple thing I learned then was "idiopathic = no known cause," "hyper = excess,"- "somnia = sleep." I was like James Dean in a very bad bizarro-world movie called A Sleep Without A Cause. But no matter how bizarre it was, what was even stranger were the actual results of the sleep study.

This cat knows what's up.

The sleep study had a routine all laid out for me: I was going to go to bed at the normal time I usually did, I would sleep for 8 hours, they would wake me up for two hours, ask me to nap for 20 minutes, and then wake me up again. There were to be 2 or 3 naps the following morning. Well, nap time came and you guessed it, it was lights out. And it happened like that for every single nap. Turns out I was falling asleep in 7 minutes or less on average, no matter that I had 8 hours of sleep just the last night.

That looks extremely comfortable.

Certainly very odd. It explains my propensity for sleeping during class in college, sleeping in the hallway between classes, and wanting to sleep all the time. I was actually fired from a job because I fell asleep doing data entry; now mind you, I had taken benadryl because my allergies were out of control, but still, I suppose it didn't sit very well with them.

Morning nap on keyboard? Don't mind if I do.

I suppose I really should have guessed that something wasn't quite right when, as an assignment for a 3D art class, we had to make something that applied to a skill or talent we had. What did I make? A pillow and a quilt. Sitting in class we had to demonstrate our talent, and so I got up explained my talent for being able to sleep anywhere and sleep like the dead, went over to the professor's desk, laid on it, and promptly fell asleep. I wasn't awoken until the end of the class, apparently after a drum solo that some guy had done using a drum practice pad he had made. I laugh now to think that people were skeptical of my claims.

Gonna learn these books through osmosis. Like a boss. Don't mind the drool.

To add to all of that, at night I would sleep for 8 hours... or 10... or 12... or 14... or 16... it was like I was never to get enough sleep, and if someone didn't wake me up, I would keep right on sleeping. I know my parents were worried when I would go to sleep around 11pm and wouldn't wake up until the following afternoon at 3pm, after 14 hours of sleep. At least the idiopathic hypersomnia explained what I did and why I did it.

Don't stick your feet out... there could be monsters!

Here's what Wikipedia says about Symptoms:
"Those who suffer from hypersomnia have recurring episodes of excessive daytime sleepiness (EDS), which is different from feeling tired due to lack of or interrupted sleep at night. They are compelled to nap repeatedly during the day, often at inappropriate times such as at work, during a meal, or in conversation. These daytime naps usually provide no relief from symptoms.

Patients with hypersomnia often experience prolonged night sleep and have difficulty waking from long sleep, feeling disoriented upon doing so. This condition is known as sleep drunkenness.^[2] Other symptoms may include anxiety, increased irritation, decreased energy, restlessness, slow thinking, slow speech, loss of appetite, hallucinations, and memory difficulty. Some patients lose the ability to function in family, social, occupational or other settings. Typically, hypersomnia is first recognized in adolescence or young adulthood.^[3] These symptoms are present in both types of hypersomnia.

A sufferer of primary hypersomnia displays these symptoms continually for months or even years. Recurrent hypersomnia is characterized by recurring periods of symptoms many times throughout the year mixed with periods of normal sleep-wake cycles. Kleine-Levin syndrome is the most well-known form of recurrent hypersomnia, though it is very rare; sufferers often sleep up to eighteen hours a day and yet do not feel refreshed upon waking."

Haven't even started. Already exhausted.

Symptoms from PubMed Health:
Symptoms often develop slowly during adolescence or young adulthood. They include:

• Daytime naps that do not relieve drowsiness
• Difficulty waking from a long sleep -- may feel confused or disoriented
• Increased need for sleep during the day -- even while at work, or during a meal or conversation
• Increased sleep time -- up to 14 - 18 hours per day

Other symptoms may include:

• Anxiety
• Feeling irritated
• Loss of appetite
• Low energy
• Restlessness
• Slow thinking or speech
• Trouble remembering

Now I can tell you from personal experience that being excessively sleepy during the day is a complete nuisance; it's the same feeling after you eat a bunch of turkey on Thanksgiving except constantly. Thank God for my boyfriend now because if he sees that I sleep past 10 hours, he's by my side, singing me awake. Sometimes I'm so disoriented and so fatigued that he has to help me sit up out of bed. I thank the Lord every single day for having that man in my life; he is so good to me.

Hot espresso in bed? Not sure if brilliant idea or really dangerous one.

I used to have these episodes where my alarm would wake me up, I would stand up out of bed, and then immediately lose all sensation of balance and fall over onto the bed with the room spinning wildly. It was like I couldn't balance for the life of me and my body seriously didn't know up from down. I'd push myself up onto my hands but immediatelty fall over on my side; it's a miracle I never fell to the floor during one of these "sleep drunkenness" spells.

It was seriously exactly like this. Only a lot less graceful.

Some people, upon learning of my condition, will joke with me about how they wish they had Hypersomnia instead of Insomnia, wish they could trade places with me, etc. Well, let me tell you something right now, given the choice between insomnia and hypersomnia, I would choose insomnia. For you people thinking I'm crazy for saying that, let me say this: the grass is always greener on the other side. Imagine trying to wake up for work, feeling like you haven't slept at all, hitting the snooze button, and then waking up two hours later having to call you boss to give him the same explanation you've given over a dozen times before: that you never heard your alarm clock go off. In some cases I never even had the chance to hit the snooze button because I had slept through my alarm clock.

It's a legitimate reason, I swear, Farmer Brown.

 Let's take it a step further. Let's say it's your day off and you're allowed to sleep in, so you wake up naturally at 11am - with full intentions of getting out of bed - only to realize you dozed off and it's now 12:30pm. So you decide that you're really getting up this time, only to glance at your clock and see that it's 3:00pm. Hypersomnia robs you of your day, your free time, and your life; I wouldn't wish it on my worst enemy.

That's about right.

Examining my past after the diagnosis in 2009, it occurred to me that I had been having all of these same symptoms since high school, probably around 2000... now it's 2012 and so I've had Hypersomnia for 12 years. They say the average adult sleeps for 1/3 of their life... being someone with Hypersomnia, I'd estimate that I've already slept 1/2 of mine.

And you thought the clock read 4:41am? Try PM.

 Hypersomnia has also affected my memory quite severely. My mother would say that I had "the memory of an elephant, because I would never forget." Out of all the things that Hypersomnia has done to me, it's what it has done to my memory that I resent the most; my short term memory is crap now. I have to write myself reminders on sticky notes to even remember the simplest things. My long term memory is still intact, thank the Lord, but feeling like you've missed the better part of 5 years because you don't remember things is a hard pill to swallow. I decided to start keeping a journal, written by starting with, "Dear Stacey, Today..." so that I won't forget the things that happened to me, or if I do I can remember when I read my own words to myself. 

This guy knows my strategy.

Taking into consideration my seizure disorder that I've had since 2002, but diagnosed in 2008, the medications I'm on for that don't help as they all have a side effect of drowsiness. What really grinds my gears about this is that my Hypersomnia has no known cause - hence "idiopathic" - not sleep apnea, not restless leg disorder, nothing. If they don't know the cause, how can they cure it? They can't. But they can give you medication for it, "alertness medication" that's not caffeine and not an amphetamine, but there are side effects of that medication as well: such as insomnia. So it becomes a vicious cycle.

Morning vs Night.

Here's another consideration from Wiki: "People who are overweight may be more likely to suffer from hypersomnia. Although studies have shown a correlation between lack of sleep and weight gain, sleeping at the level of a hypersomniac can also lead to considerable weight gain. This is because excessive sleeping decreases metabolic energy consumption, making weight loss more difficult. Sleep disorders of this nature can also provoke or initiate weight gain, as sufferers may attempt to manage low energy levels by eating non-complex carbohydrates."

A fan of fans, I see. I approve.

I used to be thin but over the years it's become harder to maintain my metabolism... sleeping for 10 or more hours sort of turns you into a bear in hibernation, your metabolic rate slows way down and so everything you eat gets stored for energy reserves (FAT). I'm not obese either, but I am carrying around 30 extra pounds than I should be.

I know that feeling, buddy.

The best remedy I've found for combating this is regular exercise and eating healthy, but by no means does it eliminate Hypersomnia. Some days I lose all of the daylight in my day and so I don't get a chance to exercise.

Run as fast you can to the next street lamp. Light equals safe.

Here's the thing, if you think you might have Hypersomnia, go get tested. If you already have it and you're reading this, first of all, thank you for reading. Second, I feel your pain, my friend... it's not as depressing as it can first seem.

And lawn mowers that wake me up need to die.

Yes, Hypersomnia can be debilitating, but it doesn't mean that you can't live for you and for what makes you happy. If you have no problems taking medications, try something like Provigil. If you're like me and the medication had adverse effects, counters the medications you're already on, or something else, try these tricks:

- Have a different alarm for every single day so that your brain doesn't get used to it and tune it out.
- Try to get 9 to 10 hours of sleep a night; to most people it sounds ludicrous, but for someone with Hypersomnia, it's a pretty good number to "feel" like you've gotten enough sleep but not so much that you wake up "drunk" or more tired than you were when you went to sleep.
- Coffee or tea are your friends if you have to be one of those morning schedule persons, but never drink any after 8pm at night. Or if you do, choose caffeine-free beverages.
- If you feel sleepy in the middle of the day, excuse yourself and go to the restroom. Try doing about 20 to 30 jumping jacks, which should raise your heart rate, your metabolic rate, and increase blood flow to your brain for a more alert feeling.

Talent to levitate? She has it.

If you or someone you know has Hypersomnia, research as much as possible on the subject. Parents, you may think your teen is drastically lazy when it could be something else. Employers, you may think your employee is unreliable and can't be counted on, but it may be Hypersomnia. Husbands/Wives, be good to one another; if your spouse exhibits these symptoms, then please try and be understanding instead of getting frustrated.

Not even the sun can interrupt her nap time.

My fellow friends with Hypersomnia: make sure to explain to people that you have a debilitating sleep disorder, make sure everyone in your life understands, if it requires your employer seeing your medical history and seeing the diagnosis with his/her own eyes, then do it. It's easy to get labeled as "lazy," "unreliable," "flaky," "irresponsible," "unaccountable," "fair-weathered," and any number of labels that can make your self-esteem plummet like an anvil falling through the atmosphere. It's not your fault, having Hypersomnia isn't your fault, but it is your job to make sure everyone in your life is aware that you suffer from a disorder that impedes your daily life for the sake of understanding. Life is a lot easier when people understand what's affecting you and your life.

I wish you the best of luck. Never give up.
_____

Until Next Time,
<3 Shade