After another night of not sleeping, I started mentally chewing on the subject of sleep disorders, and I wondered, how many of you deal with a sleep disorder and how has it affected your life?

I am not talking about simply making a choice to stay up too late, and then sleep in during the day, or about a few nights of restless sleep. I am talking about a disorder that truly effects your life, and how you live it.

I have a sleep disorder that I have been battling for years. It is called Delayed Sleep Phase Disorder. I didn’t realize until a little over a year ago that I actually had a sleep disorder. I just figured I inherited my mother’s “night owl” tendencies, and so I dealt with it. As time went on however, it genuinely started affecting my quality of life.

I have spoken to a few doctors about my sleep issues over the years, but the answers I normally received have been, “It is probably anxiety. Most sleep ‘disturbances’ are.” — “Take a hot bath before bed.” — “Drink some warm milk.” — “Meditate.” — “I could prescribe something for you.”

Not helpful.

I did have one doctor offer to do a sleep study, but honestly, what point is a sleep study if you aren’t sleeping? They would sit there and stare at me through the glass while I stared back. That would be fun. Not. Especially since I hate it when people stare at me. Gives me the heebie-jeebies just thinking about it.

If it weren’t for watching a show on sleep disorders (Discovery Health, I believe), I would never have even had a name for what I was experiencing. So, with the world at my keyboard, I decided to do some research. Boom! There it was!

In the past year, I have read countless articles, forums, medical “white papers”, and it always comes back to DSPD. The hours I sleep are literally almost identical to the encyclopedia’s definition:

“Delayed sleep-phase syndrome (DSPS), also known as delayed sleep-phase disorder (DSPD) or delayed sleep-phase type (DSPT), is a circadian rhythm sleep disorder, a chronic disorder of the timing of sleep, peak period of alertness, core body temperature, hormonal and other daily rhythms relative to the usual norms. People with DSPS tend to fall asleep some hours after midnight and have difficulty waking up in the morning.

Often, people with the disorder report that they cannot sleep until early morning, but they fall asleep at about the same time every “night”, no matter what time they go to bed. Unless they have another sleep disorder such as sleep apnea in addition to DSPS, patients can sleep well and have a normal need for sleep. Therefore, they find it very difficult to wake up in time for a typical school or work day. If, however, they are allowed to follow their own schedule, e.g. sleeping from 4 a.m. to noon, they sleep soundly, awaken spontaneously, and do not feel sleepy again until their next “night”.”

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“Attempting to force oneself onto daytime society’s schedule with DSPS has been compared to constantly living with 6 hours of jet lag; the disorder has, in fact, been referred to as “social jet lag”. Often, sufferers manage only a few hours sleep a night during the working week, then compensate by sleeping until the afternoon on weekends. Sleeping in on weekends, and/or taking long naps during the day, may give people with the disorder relief from daytime sleepiness but may also perpetuate the late sleep phase.

People with DSPS tend to be extreme night owls. They feel most alert and say they function best and are most creative in the evening and at night. DSPS patients cannot simply force themselves to sleep early. They may toss and turn for hours in bed, and sometimes not sleep at all, before reporting to work or school.”

Just as stated above, my daily routine is that I don’t get to bed before 4:00 – 5:00 AM most nights, and then sleep until noon most days; and that is by forcing myself to get up, regardless of whether I am still tired or not. I have that “spontaneous” awakening, but if I really wanted to, I could go back to sleep. I just choose not to. Half of my day has already been wasted.

My peak awake time is usually between 12:30 to 3:30 AM. My social life is basically non-existent because I am awake when most people are asleep, and the first few hours I *am* awake, it is hard for me to function at a normal level. I have no energy. “Social jet-lag” describes it very well.

What I am amazed to discover however, is that after all these years, none of the doctors I have spoken to have said anything about hormones playing a part in things. Hello?! They all knew that I had a hysterectomy performed when I was 22, and that I had no hormones whatsoever running through my body. Why on earth didn’t they let me know that this was something I needed to look into? I never had sleep issues before my hysterectomy. It makes sense.

“Estrogen is considered to play a significant role in women’s mental health, including insomnia and sleep disorders. Sudden estrogen withdrawal, fluctuating estrogen, and periods of sustained estrogen low levels correlate with significant mood lowering. Clinical recovery was shown to be effective after levels of estrogen were stabilized and/or restored.”

Now, I am not saying that hormone replacement therapy is going to be the cure-all for me, but wouldn’t you think that it would have been something that should have at least been discussed with me? An option given to make some effort to try to reconcile the situation? I am amazed. I knew that not having hormones could deteriorate my bone health, but I had no idea it could have anything do to with my sleep issues.

To top it all off, you know those weird heart palpitations (PVC’s) I had been having which we thought was due to my thyroid? I have found that the only time I get them is when I don’t allow myself to get much sleep during the day. On the days that I allow myself to “sleep in” instead of running on 2 or 3 hours, my heart is just fine. The days that I don’t, my heartbeat is irregular. Not only is that due to lack of sleep, but it can also be linked back to hormones.

“Often the cause of your heart palpitations can’t be found. It’s thought that common causes of heart palpitations include: [among other things listed]

- Hormone changes associated with menstruation, pregnancy or menopause”

Wow. I even asked the last doctor I saw if it could possibly be a need for hormones, and I was told, “No, I don’t think so.” Hmmmm. Since a hysterectomy is considered surgical menopause, it makes me wonder about the medical advice I was given.

I am going to be looking into finding a homeopathic clinic or doctor in our area to get set up with an all-natural hormone therapy. I do not want to take synthetic hormones, as I believe they hold a lot of health risks. (just my personal opinion!) I am going to find a natural therapy, and give it a shot. I will let you know how it goes.

I want to leave you with something that I think is important. Don’t misunderstand someone if they tend to be a “late sleeper”. Perhaps they have a sleep disorder, and simply don’t talk about it. Maybe they don’t even realize they have one, and feel guilty … like I used to.

“Lack of public awareness of the disorder contributes to the difficulties experienced by DSPS patients. By the time DSPS sufferers receive an accurate diagnosis, they often have been misdiagnosed or labelled as lazy and incompetent workers or students for years. Misdiagnosis of circadian rhythm sleep disorders as psychiatric conditions causes considerable distress to patients and their families, and leads to some patients being inappropriately prescribed psychoactive drugs.”

Please make sure to take care of your health. If you are having issues like these, do some research. Look into everything, and don’t let the doctors tell you it is just anxiety. You know your body better than anyone else, and you need to keep pressing your physical issues until you find a doctor who will pay attention and listen to you. You are in charge of it!

I’ll keep you posted as to how things turn out for me.

Longing for sleep,