May 16, 2011

Delayed Sleep Phase Syndrome and Dysautonomia

Once upon a time when I was a wee toddler, I loved to stay up late and watch the Johnny Carson show. For those of you not old enough to remember, he was NBC's late night host prior to Jay Leno. I am told that sometimes I would be wide awake in my crib late at night. I have always been a nightowl. Which isn't necessarily a bad thing, just a part of who I am. My creative energy always seems to flow at night, and it is usually the time of day when I am most alert. Which worked to my advantage when I had to finish up all those homework assignments I procrastinated on or had an extracurricular deadline approaching that I didn't have enough daylight hours to devote to.

Things have been this way my whole life. I would feel alive and energetic at sleepovers when most of the other girls were starting to yawn. I would be a bear in the morning waking up for school and some of my most embarrassing moments happened when houseguests would overhear the absurd profanities I would yell in the morning for no particular reason, simply because it was morning and I always longed for more sleep. I seem to get the most refreshing, restorative sleep in the mornings or even into early afternoon if I happen to fall back asleep. This is the time of day my body likes to sleep. I fondly remember sleeping in through first and second period in high school and arriving late on some mornings. Thankfully this wasn't a problem for most of my teachers because I already held a 4.0 and academics were a breeze for me as I was not quite challenged enough at my small rural high school that only offered two advanced placement classes. In college, I scheduled my classes exclusively for afternoons and this schedule suited me to a tee. Sometimes being a nightowl got me in trouble with my mother or my first period teacher, but more often than not it never interfered with my life.

Since falling ill over three years ago however, I learned the true meaning of the word insomnia. I went for a period of four days without a wink of sleep, and shortly thereafter saw a sleep specialist and was prescribed several different sleep meds. The only one that worked was old fashioned ambien. And by worked I mean it would take me about two hours to fall asleep and I would sleep for about three or four hours a night. Which at the time, I was very thankful for. Just the fact that I was able to sleep at all was a miracle to me. During my waking hours, I experienced chronic resting tachycardia, shortness of breath, and sweaty palms all before receiving the POTS diagnosis.

My symptoms have improved tremendously since the beginning, but the ones I seem to be persistently left with are trouble sleeping and wooziness/lightheadedness. On rare occasion I sleep fairly well, and the following day my woozy spells are typically less frequent, less intense, and I am generally able to better cope with my symptoms when I have actually slept the night before. I am sure a lot of you can identify and empathize with my plight. It seems like a lot of us suffer from similar sleeping problems.

I have a pretty good sleep hygiene routine in place now, as I have a bedtime ritual that relaxes me and that my mind associates with sleep. I will take a warm shower, sometimes an epsom salt soak on my feet, put on my eye mask, arrange my pillows and try to get comfortable for slumber. Problem is, I usually struggle to fall asleep before about 3 am every night. It doesn't matter if I perform my bedtime routine at 10 pm or 2 am. I find that the later I get ready for bed, the faster I fall asleep. In order to be alert and functional the next day, I need to sleep until about 11 am or noon the next day. Not so great in a society where business operates on a 9-5 schedule. I have tried many times to change my natural schedule. Bright light therapy, chronotherapy, going to bed at different times to reset my body's circadian rhythm...nothing has worked. I always seem to revert back to the 3 am bedtime. It is so frustrating to try to fight it simply because that's society's expectation and the perception is that you're either lazy or undisciplined if you're not a morning person.

I have only seen a sleep doctor once and that was over 2 years ago. I opted out of the sleep study. My sleep specialist diagnosed me with both initiation and maintenance insomnia. However now I think I have something more like Delayed Sleep Phase Syndrome, where my body's internal clock is simply off, as is the rest of my body due to dysautonomia. When I sleep a 3 am to 11 am schedule, some days I feel okay, dare I say, almost normal. Sure I still have to deal with some pesky POTS symptoms, but at least sufficient sleep helps me cope with them better.

I avoid early morning appointments like the plague and as far as employment I will not be taking any jobs that start at 8 or 9 am. Recently though, my sleep patterns have come under close scrutiny by family members who tell me I just need to wake up early everyday, tough it out and I will eventually start falling asleep at a normal time. Been there, tried that. Didn't work and I felt miserable 24/7 from chronic sleep deprivation. I am sick and tired of having to try to change my imperfect internal clock to suit the sensibilities of others. So what if I'm an extreme nightowl? My body seems to function better when I don't fight it. When dealing with a chronic illness, I say, whatever works, just go with it. The people criticizing your "abnormal" schedule don't have to live in your body. Chances are they are among the annoyingly perky morning people anyway and can't even begin to empathize with your experience.

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