|Sleep Disorders, LJ Icons
||[Sep. 24th, 2006|01:41 pm]
SLEEP DISORDERS AND ME
As some of you already know, I went to my new Sleep Specialist on Friday and got some interesting news. He believes I may have a very rare condition called Non-24hr Cycle, or Free-Running (Nonentrained) Type. He wants to do some tests and sleep logs to be sure before treatment is done. Since it's such a rare disorder, it's amazing that he thought it might be it at all.
The reason why he really thinks this is it is because when he was asking me about different things, me and Oae mentioned that when my sleep cycle is left to do whatever it wants, it will "roll". That is, my sleep cycle will bump itself every day, about an hour or so, forward. Eventually, I am sleeping during the day, when normal people are awake, then it will roll and in two weeks or so, it will resemble a more natural sleep pattern.
This is a very common symptom of the disorder. What it means is, while a lot of people actually have a 25-hour day cycle, a sufferer's internal clock that tells them when it's time to sleep will not reset at the end of the day. Normal people's clock (called circadian rhythm) will be reset daily by normal things such as light and behavior patterns. People with free-running type don't get this and their clocks do not reset, hence the rolling sleep schedule.
Over time, the sleep schedule can look normal, it can look like DSPS, or it can look like Advanced DSPS. When my old sleep specialist had me do a sleep log, it was only for two weeks and for the first two weeks of me taking Lunesta, which would have made it appear as a completely normal sleep pattern with just a little insomnia issues.
Some other issues of this disorder are becoming home-bound, which I am, and having relationship issues. This is a problem for me because sometimes my sleep pattern will be in such a way that I am asleep when Oae is home and awake, so he doesn't get to see much of me for a couple weeks while the schedule is aligned to that time. It also turns out that trying to correct this with pills can actually aggrivate the problem and make it worse. Attempting to use behavioral patterns on my own will also worsen the condition. Both of these things I have noticed on my own and completely agree and understand them.
The major thing the Doctor wants to do is try to get a device called an actigraph to monitor my sleeping patterns. What this device does, is monitors activity. You wear it on your wrist and it logs your movement through the entire day. I think he said I'd need to wear it for a few weeks. After that time, it will be hooked up to a computer and all the information will be downloaded, then they can have a fairly accurate log of when I sleep and when i wake up, since physical activity drops significantly when you're asleep.
The problem is that actigraphs are apparently very difficult to get ahold of, since they're basically only used for diagnosing this disorder and the disorder is very rare. He said he hopes he can get one, but if not, we'll have to rely on me keeping accurate sleep logs. Either way, once this test begins, I will have to completely go off sleep meds for the period of time of the monitoring and let my sleeping do whatever it wants. I don't know yet if I will be able to get a note to be excused from class for sleeping (har) or if I'll have to drop the class entirely. If I have to drop the class, I guess that'll be okay, just because it puts me one step closer to figuring out what's wrong with me and being able to fix it.
Free-running type is usually treated with melatonin, the hormone that controlls the sleep cycle, and lightbox therapy. That means no horrible sleep meds that drop off in effectiveness after two weeks. That also means no more feeling drugged all the time. I'm really looking forward to this.
It also really helps that this doctor seems interested. The way it felt to me is he's excited to have a very strange case and wants to get to the bottom of it. He said the last time he had a patient with this disorder was five years ago, because it's so rare, but that I have most of the symptoms of it. The last doctor I had was told that I have an unusual sleep schedule, since he asked me for my average schedule and i seriously couldn't give him one, so I don't know if it was just too weird of a condition to diagnose or if he was an idiot. I should have fired him when he didn't even keep the sleep log I had written up.
There's a little more info at the American Academy of Sleep Medicine's website, SleepEducation.com. Here: Free-running (Nonentrained) Type
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