Sunday, July 31, 2011

I feel bad about this, you guys **UPDATED**


Betcha thought I was dead, huh? No post in like 3 weeks?! Unacceptable! I have no legitimate excuse... "I was on vacation and didn't have the internet..." "My computer crashed..." "My grandma died..." Nope. Nada. I have pictures. But do I want to edit and upload and babble on and on about them? Nope. So why am I posting now? To let you all in on why I'm so lazy.

Here is what I just posted to a forum on Idiopathic Hypersomnia (a condition where no matter how much sleep you get, you're still tired, for no reason any medical test can find, sleeping in excess of 12 - 14 hours and long daytime naps without feeling refreshed)

Hi everyone, I am a 19 year old female college student. I just had a sleep study with a nap test done a few days ago. I haven't been diagnosed with anything yet, but my doctor says its most likely either narcolepsy or Idiopathic Hypersomnia. I don't have sleep apnea. My thyroid is fine. I do have periodic limb movements, restless legs and teeth grinding at night. I have also been diagnosed with depression, anxiety and OCD since I was 8 and have been on antidepressants (all of them, currently Prozac) since then. I've always been a sleepy person, even as a baby, I slept through the night. My parents always said I slept like the dead and I was very hard to wake up.
It became a problem my senior year in high school (2 yrs ago) when I began falling asleep in class, not remembering that I had, and waking up when the bell rang, to find that I had missed a whole class. I would then come straight home from school (at 3PM) and fall asleep and sleep right up until my alarm went off the next morning at 5AM. And I was still so tired. My mom worked really hard, and was really annoying, making sure I didn't take any naps. Whenever I could, though, I'd sleep for 12 - 14 hours. I once slept for about 36 hours, not once waking up. Since the onset of this, I've had super vivid dreams (someone else mentioned this) and I sometimes have a hard time telling the difference between dreams and reality for a few hours when I wake up. Recently, I've been having issues staying asleep. I wake up several times, only for seconds and go back to sleep. This is strange because until now I've always had deep, restful uninterrupted sleep.
I've been on Concerta (methylphenidate) 36mg for a year or so now and although I hate the side effects (dry mouth, excessive thirst, jittery, sweating, ect) it has done wonders to keep me awake. Without it, I can't function. I'm also a caffeine addict, I drink huge amounts of coffee and other drinks with caffeine and have built up a high tolerance to it. College has been hard, I've slept through several classes, missed deadlines, missed out on having a social life, despite the Concerta. I'm still so tired during the day. There have a been a few instances when I've come very very close to falling asleep while driving, which terrifies me. My parents still make me run errands (I'm home for the summer) even though I insist I don't think its safe for me to drive. I think they think I'm making this all up. My mom thinks I'm just depressed and she thinks changing my diet and exercising will help. No one else, aside from doctors, understands. They all just think I'm lazy. In reality, I'm addicted to sleep. 

I have a difficult time talking about this because so few people believe me and I truly believe that you can't understand what this is like unless you experience it. So... this is hard putting this out there, but I feel like us nail bloggers are non-judgemental people (for the most part!) To prep for the sleep study, I had to go off my Concerta for 2 weeks and start sleeping "normal people hours" like midnight to 10 AM instead of 3 AM to 3 or 4 PM or whatever. So, I've been pretty messed up these past 2 weeks. But, I'm back on my speed now (haha) and am getting back to normal.

**UPDATE** 8/15/11: My official diagnosis is idiopathic hypersomnia with long sleep time. Basically (this is all what my sleep doctor in Boston told me) most people go to sleep and fall steadily into a deep sleep and then come out of it within an hour and go into REM sleep within that time and repeat it over and over throughout the night, known as the "normal" sleep cycle. My diagnosis means that my sleep cycle looks like I fall immediately into a deep sleep and stay there for a while and come out of it, and so on, and it looks completely normal except I don't go into REM sleep until about 8 hours into my sleep. I'm so tired all the time because I get so little REM sleep which is essential to feeling recharged and maintaining body function. There is a possibility that I do have narcolepsy as well but I take Prozac for depression and SSRIs like Prozac are what is prescribed to treat the major symptoms of narcolepsy. The Prozac would suppress the cataplexy (suddenly losing muscle tone often due to strong emotion) and the pre or post sleep hallucinations which I can't remember the name of. In order to officially diagnose me with narcolepsy, I would need to go off the Prozac and repeat the sleep study. The possibility of narcolepsy comes from the results of the nap test which were that I fell asleep on every single one, in under 10 minutes every time. For one I fell asleep in less than a minute and that was at 5:30 PM. But I didn't go into REM during my naps so I couldn't get the narcolepsy diagnosis, but that could be due to the IH or the Prozac, she's not sure.
So I came off my Concerta, which I was "severely undermedicated" with and started taking Provigil last week. Provigil is the drug prescribed to people with narcolepsy so my Dr. gave me the narcolepsy diagnosis in order to get the medication (confusing, huh?) Its not a stimulant, they're actually not quite sure how it works but its supposed to work. I haven't noticed anything yet. And also, I'm not supposed to drive. Apparently I'm a danger on the road because of how unpredictably I fall asleep and how quickly I fall asleep. So yeah, that's how that's been going.

I'm hoping to start posting pretty regularly starting sometime this week.

Thanks for reading my personal ramblings, if you did, and I hope you all have an awesome night/day!



  1. Wowsers, that sounds terrible! I hope they figure out what it actually is and you can start getting more help for it. I know how it is to feel like you can't function during the day--I had a hard time in college staying awake sometimes even if I got 8-10 hours of sleep! I don't know if I have a condition or anything like yours, but I've been trying to eat a little better and I'm working on getting into an exercise routine to regulate how I feel a little more!

    Hope things get better for you, girl! Hang in there :)

  2. Thanks, Whitney! I'm gonna update this post right now...

  3. *HUGS* I have multiple chronic illnesses, 2 of them chronic fatigue syndrome and fibromyalgia. I understand all too well how it sucks to be SO DARN TIRED all the time, even when you're sleeping 16+ hours.

    I'm 41 and ever since "the change" began my sleep is getting even wilder....I can be up for 36 hrs straight and feel ok, and then have days of sleeping 16 hrs straight, up for 4 and back down for 12. CRAZY.

    I would never survive this were it not for my incredible husband and kids.

    I'm glad you found an answer and hope you find a good treatment that gives you the quality of life you deserve!

    Email if you ever want a friendly ear!

  4. Headacheslayer- Thank you for this awesome comment, it so nice to not feel alone. I wish you luck as well with your conditions. :)


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