Shade Bio

Monday, October 22, 2012

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)."


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

Saturday, October 20, 2012

Life Hacks: 42 Hacks to Simplify Life

Hello Darling Otherbeasts! So the topic on my mind as of today are all the nifty "Life Hacks" I've been reading about. What is a Life Hack you say? Read on my dear reader, and become one of the informed! This is the largest compilation of Life Hacks, Tips, and Tricks you will find on the intarwebz as of today. No promises that someone won't one up this and blow me out of the water.

LIFE HACKS: 42 Hacks to Simplify Life

Life Hack 101: Oh, the simplest way to explain what a Life Hack is, is from Wikipedia which says, "The term life hack refers to productivity tricks that computer programmers devise and employ to cut through information overload and organize their data. In more recent times, the same phrase has expanded to any sort of trick, shortcut, skill, or novelty method to increase productivity and efficiency, in all walks of life; in other words, anything that solves an everyday problem in a clever or non-obvious way might be called a life hack."

Here's why I love hacks: they're always (usually) the simplest way to perform a task, find a solution, or just improve over the old ways. It's kind of a throw back to my "laziness vs resourcefulness" blog entry; see, these tips aren't lazy, they're just resourceful. And that's why I love them.

Now then on to the hacks!

1. Always fumbling through your keys and can't tell which is which?

2. Have wooden furniture with scratches, scuffs, and dings?

3. Wrapping paper always wearing you out by wriggling out of it's wrap roll?

4. Going to the beach and worried about scallywag pirates looting your beach bag when you're frolicking in the waves?
(Johnny Depp as Captain Jack Sparrow can loot my beach bag anytime he wants to.)


5. Did you roll out of bed as a kid? Do it now? Have kids that do it? (I hear it's genetic and hereditary. I used to do it.)

6. Hate is too strong of a word but I severely dislike those "sealed-shut-hard-plastic-death-cut-your-fingers-packaging" blister packs that items come in, don't you?

7. Can't recycle that shampoo bottle because the recycle code isn't one that your sanitation department facility can process? Go green with it!

8. Blew out your flip-flops after stepping on a pop top?

9. This one could save your life. Have cloudy headlights but don't wanna waste money on that infomercial we've all seen?

10. Hate digging under the sink for all your cleaning products?

11. Running out of room in your closet? (Hack for the "too many clothes situation" immediately following.)

12. Have too many clothes in your closet?
Put clothes in your closet with the hangers reversed once a year. As you pull clothes out reverse the hanger. Every year donate any clothes that you never took out to charity (hangers face original direction.)

13. Can't fit that mopping bucket into your sink and don't want to stoop over the bathroom tub?

14. Got a new key chain that's completely hard to open to fit even your fingernail, let alone keys?

 15. Renovating the house by splashing some new color on the walls but hate drips?

 16. Have hard water deposits clogging your once and former glorious Water Massager 9000X Chrome Shower Head  reducing it to trickle like a kinked garden hose?

17. Misplaced the garden trowel or the dust pan or the chimney scoop or the kid's beach shovels?

 18. Tied that plastic bag too tight and now it's in a tiny little infuriating knot?

 19. Dropped your earring or a small electrical component on the floor and it rolled somewhere?

20. Just brought home a six pack and don't wanna wait for it to cool down? Or left your pack of soda pop in the car and now it's the temperature of coffee?
Chill it out in just 3 minutes by putting them in a container or a pot and cover them in ice. Next add 1 to 2 cups of salt and fill with water. It will be ice ice baby cold in 3 minutes flat.

21. Need more time finishing that Essay Paper or your Thesis or you next big Office Project and it's due today?
Buy yourself some precious time by grabbing a .jpeg, an mp3 file, or some other media file and rename it, "MyEpicEssay.doc" and send it off to your professor/boss. The "document" will look "corrupted" and should buy you a day or two's more time.

22. Lost your phone charger and don't want to spend a prohibitive amount on a necessary accessory?
Not to fret, journey on down to the nearest hotel and tell them you think you left/lost it there. Cell phone chargers are the #1 most left behind items at hotels, so most places have a big bin full of any and all left/lost phone chargers imaginable that people are too lazy to retrieve.

23. Stuck at a crummy hotel/motel and nothing good is on TV to spice things up? Brown Chicken, Brown Cow.
Make sure the remote system is Nokia. Just enter on the remote 2-2-1, the down arrow, and then press and hold down the OK button. Free Hotel Porn. Thank you Nokia for doing something right.

24. Tires looking low but you don't have any quarters?

Just drive over to a Shell station to the air pump, push the button on the side of the machine 3 times in a row. The pump will start without you having to insert any coins. Free Air!

25. Need to cancel your hotel reservations but it's already past the date of the cancellation policy (causing you to lose money by having to pay cancellation fees)?
Call your hotel and check the policy on rescheduling to make sure there's no penalty. Then ask to reschedule your reservations for a future date beyond the cancellation policy. Call them back, speak to a different representative and cancel free of charge!

26. Stuck at an airport and don't want to pay for Wi-Fi?
Most airports often don't redirect images on websites, so just type in any url followed by "?.jpg" and this hack should get you trolling and loling in no time.

27.  Got a new job and need to wake up at 5am instead of 8am? Just wanna reset your sleep schedule because you want more daylight in your day?
Your day/night rhythm (circadian) can be reset by changing your eating schedule. Don't eat anything for the 12 to 16 hour time period before you want to awaken. Once you start eating again - or "breaking your fast" - your body will consider this to be your new waking time.

28. Hate backsplash when going number two? (You know, that little drop of water that springs back up and makes your buttocks pucker at the cold... you know.)
Just drop one or two squares of toilet paper in the landing zone before you do your business and it should suffice as a splash stopper.

29. Want the superpower to see in the dark? Hate waking up in the middle of the night to go potty and then hitting your toe on the dresser on the way back from not being able to see in the dark after the brightness of the lights?
Make like a pirate and keep one eye closed, or hold a hand over one eye when faced with the bright lights until it is dark again. This will assure that your closed eye retained the ability to see in the dark, missing that dresser on your trip back. Why pirates? Oh, because most eye-patch wearing pirates wore it for the same reasons, the ability to see below deck after being exposed to bright sunlight. Yarr!

30. Guys, don't want to miss the target when peeing in the middle of the night?
As you're standing in front of the toilet in the darkness, if the light switch is nearby, quickly toggle it on and then off while staring at toilet, it will leave an after-image of the toilet in your retinas, allowing you to pee in the toilet as opposed to on the floor; remember to keep one eye closed for seeing in the dark after your potty recess.

31. Sinus pressure got you feeling down?
Thrust your tongue against the roof of your mouth and then press between your eyebrows. Alternating these motions will rock the Vomer Bone back and forth and will loosen up congestion, causing your sinuses to drain. Hello breathing.

32. Car too far away to unlock or the remote gate key too far away from the sensor?
Place the key fob underneath your chin pointing upwards towards your skull. Your head acts as a parabolic reflector (dish) that extends the range forward a few feet, allowing the signal to reach the desired object.

33. Some person in line behind you at the supermarket called you something nasty under their breath and you want them to suffer a little? Or is that little machine just acting funny?
Misery loves company and instant karmic retribution can be in your hands by freezing up the credit card machine and causing it to reboot. Do this by holding down all four corner buttons on the machine until it powers down to reboot. Gather your things, smile and say, "have a nice day," and stroll out feeling just a little bit like the Grinch.

34. Hate waiting in an elevator for all the floors previously pressed until your floor is reached?
No matter how many buttons are lit up (thanks little kid that wanted to push all the buttons and screamed in a tantrum until mom or dad caved in just to stop the noise) simply just press your floor and the 'close doors' ([>|<]) button simultaneously until the doors close. Your floor will be the next stop despite that little kid's efforts to annoy everyone.

35. Car lock or house lock iced up and frozen over because it was nasty, wet, and cold outside?
Melt through it by using hand sanitizer, which due to its high alcohol content, will melt through the ice; make sure to get some inside the lock as well as well as some on your key.

36. Batteries not included?
Just find a 9 volt battery laying around; they contain 6 AAAA sized batteries that can be used in electronics that require AAA batteries. Small sized 12 volt batteries contain 8 1.5 volt cell batteries, which can cost up to 5 bucks a pop. Hello broken watch, you're about to get repaired.

37. Have a watch that is no longer ticking because the battery died? Don't want to pay 20 bucks to get it replaced?
Most low-end watches use 1.5 volt button cell batteries. Make sure your watch back looks like the one in the picture (if it has grooves it usually requires a special tool that looks like a claw because it unscrews, although some grooved backs are just false pop offs to make the watch look higher end... like someone is going to check the back of your watch anyway). Take a small pocket knife and locate the sightly raised area, stick the pocket knife gently under that lip and pull upwards. This will cause the back to harmlessly pop off (trust me, I am a jeweler and changed a gazillionty watch batteries using a "watch tool" that was nothing more than a pocket knife with a big-name-brand-watch-company's logo on it). Once the back is popped off, you can pop out the battery using the same pocket knife and install a new one. To get the back of the watch back on just put it in place, set it on the counter and press firmly on the metal bezel (don't press on the glass, just don't) and there ya go. Tick tock, tick tock.

38. It's baking time and your apple peels are going to waste? Or you have finicky kids that don't like the peel?
Simply toss a handful of apple peels into a saucepan and simmer for 5 to 10 minutes. Not only will your house smell delicious (toss in a cinnamon stick for a deliciously yummy smell) but you'll have just made yourself a healthy and nutritious tea (tisane).

39. Gotta pipe frosting onto a cake or cupcakes in time for the bake sale?
Don't worry about fancy piping bags, just use a freezer bag (or any ziploc-like bag). Cut a small hole in the corner of the bag; if you have the metal or plastic frosting tips stick one of those in first, followed by the frosting, and then pipe away to save the day!

40. Always have a habit of running late? Just paranoid?

Whether it's for work or for a hot date, punctuality can be preserved by making a playlist exactly as long as you have to get ready. Start with relaxing songs that progressively get more energetic. You will be able to tell how you're doing on time by what song you're listening to, and if your music stops, then you're running late. 

41. Hate watching your minutes drag by on gym equipment during your workouts?

This is a great hack for running a mile (or five) on the treadmill at the gym so you never have to constantly look down at the machine for a time readout, which sometimes seem to go backward if we really don't feel like working out that day. If you know it takes you 12 minutes to run a mile, fill your playlist with songs to add up to 12 minutes. make sure they're songs that you feel like moving to and that you enjoy, start it up when you begin running, throw a towel over those nasty little red glowing numbers, and enjoy your musical run. When your songs are over, that mile will have been run, all without having to stare at analog numbers.

42.  Feel a stubborn sneeze creeping up but it just won't happen?

To sneeze faster simply stare up at a bright light and your sneeze will happen more quickly than just waiting on it.

That concludes the list for now. Have a great hackful day!

Until Next Time,
<3 Shade

Myself and Things I've Learned 
Hack a Day