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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)."

 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









21 comments:

  1. Hello,
    Thank you very much for your honest blogpost about idiopathic hypersomnia.
    I have i.a. myself. Already 20 years but diagnosed 5 years ago...
    All you are telling is true.
    Medication wasn't working for me, I became suicidal...
    Every day I do 4 powernaps. That helps for a moment.
    I also sleep at work and during sport meetings to improve concentration and performance.
    Since 1 month I take hypericum drops, that helps a bit for concentration.
    I had 3 burnouts caused by no possibility for powernaps at work and misunderstanding...
    I am still searching and searching for a solution, somewhere in this world I will found something :-)
    I wish you all the best and never give up!

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  2. Yvette, thank you so much for contributing your personal testimony. <3 It is a difficult battle and believe it or not, I've found that what I eat really affects how tired I am... it's almost like the ketogenic diet prescribed for ADD, called the Primal Blueprint by Mark Sisson. From what I've observed in myself, my tiredness soars when I eat too much sugar and carbs. So I'm pretty much eating like a caveman: meats, veggies, fruits, nuts, and berries. I hope maybe this will work for you as well! <3 Shade

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  3. I have Idiopathic Hypersomnolence as well, and work in the western world of medicine called neurology. Luckily I knew to get tested, and tried each of the prescribed medicines over a period of years. I however wanted more of a cure, versus a mask to the illness, and stimulants for me were a horrible experience. I began seeing a licensed Naturopathic physician, and she prescribed Carcinosin. This has been the best healing product so far, along with correct diet, consistent sleep patterns, and light to moderate exercise. I chose a licensed Naturopathic Physician due to their extensive training. There are only a few states which carry this type of licensure.

    It's so difficult to describe what this does to life. I've heard everything from well intended people about how I should live, and what I should do. I don't get as frustrated at the disorder as I do the lack of understanding from the community AFTER I've explained my limitations. I remind them that this is a change in an organ in the body just like the pancreas with diabetes, and that I have to address it as such.

    People look at me and think I look amazingly healthy. I am for the most part, but the interruptions in my work and social life are difficult. I however continue to have hope through the naturopathic approach. I now can go the entire day without a nap. That speaks volumes, when previously about every 4 hours I needed to sleep.

    Good luck to each and every person on this path.

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    Replies
    1. <3 Thank you. Best of luck to you.

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    2. can anyone else speak to taking Carcinosin for Idiopathic hypersomnia?

      this might be the most bizarre substance I've ever heard of. it's made from breast cancer tissue. even Google doesn't have much information about it.

      where do you buy it? is it safe? how is it administered?

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  4. thank you so much for sharing this! you explained it PERFECTLY! People just dont understand... i'm going to send them a link to this so that they can better TRY to understand what its like from my perspective.

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    1. Jen, thanks so much for reading. I'm so glad people are finding this helpful; it was difficult to be "in the dark" for so long without knowing what was wrong. I wish you the best of luck. <3 Shade

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  5. Hi there. I haven't been diagnosed yet, just stumbled across this recently and REALLY believe I have this issue (scheduling a sleep study) but I've been trying for years to get a diagnosis and understand why I'm fine and then one day every few months or so I sleep for 24 hours and my brain feels like it doesn't work. (I'm guessing I have the recurrent kind that's sporadic).

    I've been trying to get a diagnosis for years and haven't had any luck. BUT since nobody could tell me what was wrong I've found that food and exercise are huge factors and for me, that its not just the hours slept per night (you're right 9-10 hours does a world of good for making my symptoms less sever)but what hours they are. Does anyone else experience this? I have this weird set body clock that seems to want to sleep from midnight to 10am or 11 - 9am. Pushing further and further before 9am sends me into a tailspin - even if I've slept 10 hours (eg if I have to get up at 7am and go to bed at 9pm I feel AWFUL). Anyway, just curious anyone else find this to be the case with them?

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    Replies
    1. Hi there, the hours you mentioned actually work very well for me. I usually crash in between 11pm and 12am, then wake between 8am and 9pm... sometimes 10pm or later if I'm menstruating - sorry if TMI but I found it really affects my fatigue levels- and you're right... if I try to go to bed earlier or later than that it completely throws me off. What's helped me a lot is cutting out sugars and carbs like in the ketogenic diet for ADD, ADHD, Epilepsy, as well as for Diabetes. Eating "clean" really helps my sleep schedule maintain some modicum of normalcy.
      I wish you the best of luck and let us know how it goes. <3 Shade

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  6. Hi my name is Holly but I put anonymous cause I think I'm on my husband google account lol.
    I hate that you have this but I have to say it's nice not to be alone. I have hypersomnia and insomnia and of course it sucks! And I agree with you I would much rather just have insomnia. The reason I say this is because my hypersomnia has taken away so many memories. Memories with my family, husband and children that are gone from my mind forever. I thank God that I have my husband to tell my the stuff I don't remember, he's wonderful!

    I have to say you seem like a shining star with how you've dealt with these terrible things we live with. Your an inspiration in many ways. The one way you've really inspired me is that I'm going to start to journal now! I hope one of these days they will have better ways to deal with our problems but until then I guess we're all left to our own ways of trying to make things better. Thank you for telling your story it helped me a lot!
    Take care,
    Holly

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    Replies
    1. Holly, thank you so much for your kind words. I'm sure having both insomnia and hypersomnia is quite taxing, I can only imagine. Yes, the memory loss is such a tragic loss, especially for those of us who used to be "elephants." One positive aspect of forgetting memories is that you forget a lot of the negative ones, too! Optimism is always helpful. Best of luck to you with your journey!
      <3 Shade

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  7. I just wanted to say thank you. While I've been diagnosed and have done my fair share of research on Idiopathic Hypersomnia, there was something about your personal account that was very comforting. It's so hard trying to get somebody without this sleep disorder to understand, but you seemed to explain it all perfectly. So thank you.

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    1. Anonymous, you're so very welcome. It seems our plight is a misunderstood one but hopefully with testimonies like mine and more accounts from others, we can begin to shed light on this often misunderstood, misdiagnosed, and debilitating condition. We are not alone.
      <3 Shade

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  8. Hello,

    I have just been diagnosed with hypersomnia. The diagnosis brings relief in some way. It explains so much of what I believed to be a normal part of my life. Taking naps in the middle of the day. Pulling my car over so I could nap quickly and then get to my destination. Never driving long road trips in the middle of the day when my sleepiness peaks. Worrying about falling asleep at work. Planning my childrens nap times around my nap time! Looking back I realize how ridiculous it sounds.

    Yet, the diagnosis leaves me feeling embarrassed and regretful. I always knew that I like to sleep more than other people, but I never knew how abnormal it was. My sleep study revealed that after 8 hours of sleep, I fell asleep within 2 minutes during 5 naps spread through the day. I was so frustrated at the sleep tech who kept waking me up because I just wanted to keep sleeping! I am sad that this has been going on for so long (I am 40 and have always been like this) and I never knew. How would my life have been different had I been treated earlier? My doctor has never been concerned about my complaints of daytime sleepiness, anxiety, irritability, weight gain and depression. I have been in therapy for 5 years for all of these symptoms that were treated with antidepressants that have not worked. Finally, my Dad suggested that I go for a sleep study, as he has sleep apnea and had tremendous relief from his CPAP machine. I only wish it were as simple as a CPAP machine. Now I learn that there is no cure. I will try nuvigil and hope for some relief. Maybe my symptoms that were assumed to be from depression will resolve as I treat the hypersomnia?

    I am afraid of what my friends and family will say. In fact, I think I will tell very few for fear of their reaction. I already feel lazy when I have to sneak a nap in the middle of the day. I do not need anyone judging me further or telling me that it must be in my head. Has anyone else had this reaction from people after revealing your diagnosis? My husband told me that I should exercise more because my weight gain was probably the culprit. There are so many things wrong with that reaction. How do I respond to criticism like that? More importantly, how do I develop the confidence to be comfortable with myself as a "sleepyhead."

    Thanks for any advice/comments.

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  9. Hi There,

    Have you ever been diagnosed with Narcolepsy? Also, are you taking any specific medication for idiopathic Hypersomnia? Thanks!

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  10. This was such a blessing for me to find other struggling with this as well.
    I appreciate all of your insights.
    Best to you and yours :)

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  11. Hi Shade, I have hypersomnia as well as Delayed Sleep Phase Disorder, meaning that I typically fall asleep much later than most people, usually between 4-8 am; it's like being always jet-lagged. I'm down to sleeps of 8-14 hours on most days, but in the past have slept up to 32 hours in one go, and 24 hours on dozens of days and nights. I have been asleep on so many days (including glorious sunny days with blue skies that I just roll over and sleep through) and have been awake mostly at night for the past 4-5 years. I can also try to be awake during he day and end u not being able to sleep until the next morning; in other words, I can be awake for long stretches, too, because my jet-lagged-like mind thinks that night is when I should be alert and up. I am so happy you have put this into words, as I plan to, also. My condition might not be completely idiopathic, either, as I have had other chronic ailments surface when the sleep problems began, but there is no definitive cause. I have diagnoses of depression, anxiety, chronic fatigue, adrenal fatigue, and hypothyroidism. I start a great-paying part-time job on Monday and fear I might lose it because of the sleep problems, as they need me 8:30am-12:30pm. I am really hoping I can twist my schedule to work for this job because it pays phenomenally well and is better than a full-time job at a low wage. Hugs to you on your journey, and when I write something I'll try to let you know.

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    Replies
    1. Hi, I'm Donna. I have no diagnosis yet of hypersomnia, but Shizly, I have all the other diagnoses you have. It really sucks! I have scheduled an appointment with a doctor that I hope may help me because most have never heard of hypersomnia. I'm too deliriously tired right now at 5:30am too write much more as I wait for adderall, provigil, and coffee to wake me up enough to go to work, but I'm sending loads of empathy vibes. Also, I went gluten and dairy free 3 years ago and it helped, but the benefit has completely waned. I'm back to square one. Sending warm vibes to you too, Shade.

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  12. I just cried the entire time reading this. It perfectly captures everyday for me on a college campus. It's so hard.

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  13. Hey everyone. I got diagnosed early this year and I've been suffering from it since I was 16 or so. I was prescribed Nuvigil but it is giving me the worst migraines I've ever had. (Ocular Headaches too.)

    I'm trying to figure something out that works but I don't really have a great support group. (Wife and family don't really get it or just don't seem to fully understand my situation.)

    I feel like eventually I'll probably get fired from my industrial job even though I have FMLA. Some days I'm okay but some days I'm so badly out of shape I fear going in and causing bodily harm to myself or others.

    I wish there was a cure.

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  14. I enjoyed reading this article. PLease continue publishing helpful topics like this. Regards, from beddingstock

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