I've had "funny" sleep for as long as I can remember. My parents have lots of stories about it, too. My mom always said that I would just put myself to bed when I was ready. I used to get up in the middle of the night and watch TV until the colored bars came on, then go back to bed. There are lots of stories of me sleep walking - which usually involves me "chewing-out" my parents or something. I would nap and argue with my mom and Desiree that it was actually the next day even though it was dark outside. My mom even told me how creeped out she was when I sat up in bed and watched her in my room while I was still sleeping. Thanks, mama.
When I got older I continued to sleep walk. I was embarrassed when people would randomly talk about how creepy sleep walkers were but didn't tell them that I was one. In high school I actually starting researching it during my library time - this was pre-internet. I actually pulled out cards, looked for the appropriate call number, and physically retrieved books and articles. Crazy to believe how this just doesn't happen anymore. I read that 1% or less of adults are sleep walkers and that the mass majority of sleepwalking stops around the age of 12. Up to 40% of kids may have sleep walking episodes (so why did my peers think it was so creepy? Didn't any of them sleep walk?!).
By the time I was an adult, I was ok with my sleep walking. People still thought it was creepy, but then I was letting them know that I was a sleep walker and I look completly normal so maybe they can find out more about it rather than be creeped out by it. This seemed to work until my favorite roommate, Rachel, watched a TLC or Discovery show about sleep walkers that described the really rare cases of people who have killed others in their sleep. She said she was going to lock her room from then on. I assured her that I would never kill her (and the program even emphasized how rare this was), but I don't know if she felt secure or not after that. She had caught me once or twice sleep walking but I quickly come out of it - confused, but more coherent - so I could let her know I was fine and she should just go back to bed like I was going to. When I was seriously dating Bruce he was eager to see an episode. Silly guy. Once they started he was getting really upset. I was interfering with his sleep. Now it wasn't cool or funny...it was just annoying and disruptive.
Around the time I started Post-bacc/Grad school, I noticed that I was getting tired more often and all throughout the day. Unlike the majority of my college peers, I was going to bed and waking up at decent hours (in bed by 10pm awake between 5 and 6am). Why was I tired? I made a lot of excuses for it (1) I was bored by studying or being in classes (2) I was studying a lot and sleep was an avoidance technique (3) I was pushing myself too hard (4) I was lazy that day... any excuse I could think of for why I wanted to sleep off and on all day.
It progressively got worse, but then again, so did my load of work. There's another excuse. I also was a Teaching Assistant, which would cut into my nap time. I was still going to bed at a decent hour every night, though. I ate right, I exercised, I had healthy sleep habits but it gradually worsened.
When I graduated and this continued I thought it was the stress of looking for a house. Then we got the house I thought it was the stress of my job, maybe I was getting a cold, maybe it was finanacial stress. It continued to worsen but I didn't really discuss the issues I had been having.
The issues in one summary were:
(1) hallucinations - originally it was spiders. A big one. When I started working it was children. Bruce always joked that we couldn't have kids because I always lost them. We thought this was a dream I woke from, even though I felt fully awake when I saw them.
(2) sleep atacks - it's really annoying to be doing something and then, like hitting a wall, I have an incredible urge to sleep. In the winter I thought it was my body telling me I was getting sick. In the summer I thought it was from running around too much. In the car it was just down right scary and dangerous.
(3) constant waking - within the last 2 years I wasn't sleeping straight through the night. I was waking for no reason between 3 and 15 times a night.
(4) excessive daytime sleepiness: I would feel fine for hours then feel a huge dip in energy and ability to stay awake. I had no energy or drive. I pushed through, though. Sometimes it would take minutes, sometimes an hour. It was rough, but I didn't want to be a whiner.
(5) dream recall during naps - did you know you shouldn't be able to fall asleep at lightning speed, dream, and then recall it in full detail during a 20 minute nap? Neither did I. Apparently, this shows your brain is not functioning properly. It is possible to have isolated incidents, but not to have this be an ongoing issue.
(6) sleep paralysis: although rarely occuring in comparison, it was disconcerting nonetheless. Only once did someone else witness it. Bruce told me to get up and go to bed when I fell asleep on the couch but I couldn't move. I heard a thud and realized it was my leg that had fallen off the couch. He carried me to bed. After some time I was able to get up out of bed. He told me how strange it was to see me. It was like I wanted to get up but couldn't. That's exactly what happened.
I didn't really know how to label these until I read an article on Yahoo in the Spring. I laughed because I had a majority of the sleep disorders that were on the list. I never really even thought about having a sleep 'disorder' - I thought of it more as a sleep 'difference.' Around the same time I noticed that co-workers were starting to comment that I was always dragging. Bruce was complaining about my excessive sleepiness and my lack of drive to do anything but sleep. I still didn't appear to be sleeping an abnormal amount - napping only on the weekends unless it was a real bad day, going to bed and waking up at decent times - but I wanted to sleep all the time. It was starting to affect my job performance. I don't know if the families realized it, but I did and it was embarassing.
I finally decided to pursue this with a doctor. I did it more because I was thinking of future children. If there was a way to help me feel more awake and 'normal' I should take care of it before I have kids, right. When I described my symptoms to the doctor, she told me not to think of myself as a 'freak' (I never did until she said that, thank you very much) but that my issues were far from normal. I went to the sleep doctor who, based on my answers to a series of tests and a case history, suspected I was developing narcolepsy. There was a small possibility it was sleep apnea, but he spent a good deal of time discussing narcolepsy and it's treatment.
"Narcolepsy" was hard to hear. I had heard it from the doctor and seen it on sleep websites, but having a specialist tell me that was a strong possibility was paralyzing. I didn't want that. For days I quietly obsessed over it. I told some others because I thought that if I told people it would lessen the blow when I heard the definitive news. After a few days I actually wanted to have a diagnosis of narcolepsy. That would mean a definitive plan of action. There wouldn't be additional tests and trials. I would simply feel better.
The sleep study was a nightmare. I was wired and felt like a robot through the overnight study. I was like Medusa with the number of wires coming off my head and face (under my eyes, at my jaw, above my eye brow, all over my head in my hair). I was wired literaly down my legs and stomach. I was thouroughly exhausted at that point, too and I broke down crying because I knew they weren't going to find anything. I felt like I didn't sleep the whole night. The lights came on around 6 in the morning and they unhooked most of the wires. I still had many hours to go, though. For the rest of the day I was trying to entertain myself and not fall asleep because they had scheduled sleep intervals. I fell asleep for each nap. I thought that I wouldn't be able to sleep that night because of all the sleeping I had done - wrong. I had no trouble going right to sleep that night.
The unfortunate part of telling people about my difficulties is that they wanted to know the outcomes. Not good, I thought. I didn't sleep and they won't find anything. When I got the report it said at the bottom "sleep disorder." There it was. It was finally in writing, no going back. I had a "disorder." Sure, they didn't see the real 'freaky' stuff that I do, but they did determine that I fall asleep too fast, too often and too easily. I am a wonderful sleeper, in fact. I have REM sleep but it didn't occur that quickly. However, it also said "cannot rule out narcolepsy." Ack! All that work and I may still have it but the tests just didn't reflect it?!
When I returned to the sleep specialist to discuss the results, he told me that I am strange. He is almost positive that I will be diagnosed with narcolepsy within 5-10 years. I have all the symptoms in my case history and the beginning symptoms on the sleep test (falling asleep too fast, too often, too easily). At this time he is diagnosing me with "idiopathic hypersomina" - a fancy term for unexplained excessive sleepiness.
Other news, I have a "diametrically opposed" diagnosis of "parasomnias" as well. A fancy word for my sleep walking and talking. Typically these two things don't co-exist. He thinks I'm a puzzle, basically.
Now, that being the news, even sadder news was to come. Because of the two diagnoses, there are 2 completely different methods of treatment. Which one to do? Make me sleep more deeply, thereby making me feel more awake during the day OR make me feel more alert during the day and continue to sleep the same way I do now at night. Sorry but neither seemed like a great option.
Then even more sad news, when I plan on getting pregnant all the way through breast feeding, I cannot be on any medications prescribed. I cried. I was going to be given sleep/restfulness and then have it taken away. I am so exhausted, this just isn't what I want to hear. I need rest, though, so that may mean putting off having kids. I really want kids, but I need to be healthy. I may eat right, exercise and have all the healthy habits you're supposed to, but I don't feel like my body is a healthy environment for a child at this time.
So what happens now? Well, I'm trying the sleeping more deeply route. I will have a check up in 2 weeks to see if it helped. If not, then I'm trying the more alerting route. If that doesn't help, I don't know what we'll do.
If one wonders why I would be diagnosed years from now, but not now, that's because (as explained by the sleep specialist) narcolepsy takes years to fully develop. It's hard to know that I have something happening inside me that I have no control over. Something that is going to gradually affect my life more and more. Symptoms can only be elevated and controlled, but not cured. I like to have control. This will be hard.
So for now I will just keep trying to feel 'normal' and maybe even feel awake most days. It's all I want right now.
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