Friday, July 28, 2017

Why Am I So Tired? (Friday Five Edition)

So I know it's been awhile since I posted.  I have been really busy at work and just too tired when I'm home.  I've also haven't been running.  Though I have been biking, I haven't in the past week and a half because my IT band has been acting up.  Too much too quickly.  I just was having so much fun that I kept riding and I should have given myself an extra rest day.  But anyway I have been wanting to write this post for awhile and this would help explain when I say I'm tired and have no energy to even blog, this would help explain it.


Ever since I can remember in my adult life, I have always been tired.  This is more tired then the average person usually is.  I mentioned it many time to many different doctors and all they say is get more sleep or get more exercise or reduce the stress.  No matter what I do, I'm just tired all day.  And to explain what I mean by tired is that I could wake up at 8 on a Saturday after getting 7-9 hours of sleep and I'll get up, have some breakfast.  I'm so tired that I would take a nap at 10.  Yes, I would be able to fall asleep for another hour or two after only being awake for a couple of hours.  And then there are even times that I could take a second nap in the afternoon.  And I am this tired every day.  An example I read was if a normal person went 3-4 days with only getting 2-3 hours of sleep a night, that is how tired I am.  And I get 7-9 hours of sleep every night.


Last summer I saw a new doctor and she actually took me seriously and referred me to a sleep clinic. I talked to the sleep doctor and he asked me all these questions on if I lose muscle control if I laugh too much.  He wanted me to do a sleep study.  Not only overnight, but also a day sleep study.  Here are five things that have happened with this study.

1. I showed up about 8 PM with my pillow, blanket, and a bunch of stuff to entertain me the next day.  I brought my own pillow and blanket not because they didn't have them, but I wanted to be as comfortable as possible.  I have a hard time sleeping when I'm not in my own bed.  They attached all of these wires to my face and body.  All to measure brain waves, breathing, snoring, and muscle movements.  Even though it was very uncomfortable I did eventually fall asleep.  I woke up a few times through the night and they knew through the monitoring.  They came in and helped me get to the bathroom (I was plugged into the wall) and reattach the wires that came lose.


2. The moment I woke up in the morning, they knew and came in to unattached some of the wires.  I still had to wear some of the wires throughout the day for my day study, but at least I was able to freely move around.  They had a TV and a comfy chair to relax in.  I was not allowed to sit or lay in bed.  So the day study was to have a 20 minute nap every two hours and see if I fell asleep and if I did, how quickly.  They ordered breakfast for me and I was off to my first two hours awake.  Before I knew it it was time to take my first nap.  I didn't feel like I fell asleep at all and just laid there for the 20 minutes.  I was very tired though the day and had 3 more naps.  The last nap I did feel like I fell asleep and the nurse said that I had and she let me sleep a little longer then the 20 minutes since it was the last nap.

I had to carry this around with me all day

3.  So what did the study tell me?  I don't have sleep Apnea or Restless Leg Syndrome.  I was so relieved that I didn't have sleep Apnea as I so didn't want to have a machine attached to me while I slept.  He said that I got 6 hours of good deep sleep, so he was satisfied that I can sleep well through the night.  But my day study told a different story.  Out of the 4 naps, I fell asleep within 5 minutes for 3 of them.  He said that was not normal, that I shouldn't be falling asleep that quickly after the amount of sleep the night before.  Even though I fell asleep quickly for those naps, I did not go into REM sleep right away.  This is a tell tail sign of Narcolepsy.

4.  So if I didn't have any of the sleep disorders, what was wrong with me.  Basically I have Idiopathic Hyper-insomnia.  So what's that?  It's basically a name they give to anyone with sleep issues where they cannot put into any other category.  So they know there is something wrong with me, but they are not sure what.  I explain it as Narcolepsy-light.  I have most of the symptoms of Narcolepsy but not enough to be categorized with it.  And no, I have never fallen asleep without knowing it, though I am so tired a lot that if I had a chance to lie down, I would fall asleep.

5. So how is it treated if they don't know exactly what is wrong with me?  They are treating me the same way they would treat someone with Narcolepsy.  So I'm given stimulants to help me not be tired and to have the energy of a normal person.  The common stimulants that are given for this are the same drugs used for ADD, Ritalin and Adderall.  For the last 9 months I have been trying to figure out the right drug and right dose.  There is also extended release and quick release.  I haven't quite found the right combination of things yet, but I have found that I am not as tired through the day when I am on the medication.  Even though there are days on the medicine that I still feel tired, it is so much better then the days I don't take the medicine.  I have also found that some of these combinations don't work for me after several months.  Right now I'm on a new combination that I'm not sure is working as well.  Hence why after work I have no energy to write a post.  And since I'm busy at work, I don't have the breaks I normally would to get a post written during the day.

Have you ever had a sleep study?  What have you done to help you stay awake?


I'm linking up with Fairytales and Fitness and Running on Happy for Friday Five 2.0

10 comments:

  1. Wow this is so interesting. I hope you can find a combination that works well for you and gives you your energy back again.

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  2. Wow, the sleep study is interesting! That's great news you were able to find a doctor who took you seriously and that they're able to find a treatment. I have hypothyroidism and ran out of medicine for a bit a couple weeks ago (my own fault) and it was so hard to just get through the day! Hope things continue to get better now with the medicine.

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    1. Yeah, the meds may not be 100% but it is night and day without them. Hope you don't run out of meds again!

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  3. Oh wow! that sounds quite intense! Those wires do look very uncomfortable!

    I hope you figure out a good solution for your medication!

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    1. Surprisingly the wires weren't too bad, just really weird.

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  4. Wow I am sorry you have to go through all of this but I'm glad it sounds like you have a plan to try. Good luck, girl!

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  5. At least you got answers. Hopefully they'll get the combo right and you'll be feeling better. I work in a building that has a sleep lab in the basement, but I did wonder what they do in there.

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    1. Yeah, there were others there doing a study too, but they were just getting their Apnea masks correlated. It was kinda like a hotel with room service and wires.

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