This week, March 3-9, is National Sleep Awareness Week. The Sleep Health Foundation contends that sleep is the third pillar of health, alongside diet and exercise. I would strongly agree because for the last 14 years I have battled with a sleeping disorder.  Like so many others I took my sleeping for granted but now I realize how essential sleeping is to my overall quality of life.

In 2006 I began to have severe sleeping problems. For years I had always been a good sleeper. Going to bed at the same time each night and rising around the same time in the morning. Even taking a long nap during the day did not negatively impact my ability to get a good night sleep. But something shifted and I began a long and stressful battle with sleeping. At first, I thought it was just stress from normal life challenges. My schedule at work had changed. I was freelance writing on the side. My roommate had just moved out. A romantic relationship had just ended. So, I naturally thought that just the everyday things of life were causing me to not sleep well. But my lack of sleep persisted to the point I was not sleeping at all. Many nights I had difficulty falling asleep and would just lay in the bed for hours wide awake and feeling stressed. Other nights I would fall asleep with no problem but could not stay a sleep. I would wake up from the slightest noise or to go to the bathroom and then I could never get back to sleep. Other nights I just couldn’t sleep at all and would literally stay up for 24 hours. And lastly, this impacted me during the day, where I would nod off at my work desk or doze on the bus.

At first, I tried over-the-counter sleep aids. I tried nature relaxation music. I tried drinking warm teas and taking warm showers. None of these remedies worked. Something was majorly wrong with me and I needed to seek medical attention. First, I went to see my primary care physician and he immediately thought I had sleep apnea. He gave me a referral to a sleep doctor for follow up. When I saw the sleep doctor she agreed and scheduled me for a sleep test. I spent the night in a lab while they monitored my sleeping. In addition, they monitored my breathing, heart rate, any body movements and probably other things I can’t remember! The results showed that I had Sleep Apnea. I had episodes where I had woken up several times from lack of breathing. I was given a prescription for a CPAP machine. But this device never worked and something in the back of my mind told me that this was not the true cause of my severe sleeping problem. I shared this concerned with my sleep doctor but since the lab results showed sleep apnea there was not much she could say. I shared my worries with friends, family and co-workers; expressing that the CPap machine was not helping me. Some nights I felt worse after using the machine than before.

Sleeping Problems and Blindness

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At one point I came across some information on sleeping disorders and people with disabilities. I had never taken my blindness into consideration with my sleeping problems. A friend told me that since people who are totally blind can’t see sunlight, their bodies could not tell it was time for sleep. A local vision rehab center was doing a workshop for people with total blindness who were experiencing sleeping problems. I went and learned that my poor sleeping might be due to the fact I was totally blind and not to sleep apnea as originally thought. I began to do more research and have more conversation with people about this. I even went back to my sleep doctor to discuss the possibility. She said that was something new that she was not aware of and would look into it. But in the meantime, I continued unsuccessfully to use the CPAP machine. After multiple fits and starts, I finally gave up on that darn machine! I had become a bit depressed but also resolved that this just might be my life and to get over it. But a friend told me about a governmental clinical trial. They were looking for people who were totally blind, had no light perception and were having problems with sleeping. Well that sounded like me, right? I contacted the researcher and signed up. For two years I provided saliva samples about once a month to the Oregon State University Sleep Lab. They analyzed my samples and discovered that my circadian sleep rhythm was all over the chart. I would do well for a time and move over to the left. Then I would do well for a time and move all the way over to the right. Basically, I was zigging and zagging all over the medical chart. They found this interesting and asked me to sample more often and stay with the study a little longer. I agreed. At this point in my life I was feeling tired, depressed and desperate for a clear diagnosis of what was wrong with me. So, I was willing to persevere to get to a solution. I also wore a sleep watch and provided any changes in my health, eating or exercise routines. I told my PCP about the clinical trial and that I had stopped using the CPAP machine. He ordered another sleep test and it was discovered that I really did not have sleep apnea after all. The lab results showed that I did not have enough breathing episodes to warrant the condition.

At the end of the sampling, the researchers told me I had non-24 hour sleep wake disorder. This is a serious, chronic circadian rhythm disorder that affects a large majority of people who are totally blind. They had discovered that my internal body clock had gotten off track and felt it was because of my blindness. At some point in those first years of poor sleeping, I must have lost all light perception which explained why for years I had good quality sleep and then in 2006 things changed. They told me there was no cure but I could take very small amounts of over-the-counter melatonin an hour or two before bedtime. The important thing was to stay on a good sleep routine. I was saddened there was no cure but relieved that I had a diagnosis and some medication I could take. I decided to make peace with my situation and just continue to do the best I could. I decided to not get stressed about it anymore. To not be depressed about it anymore. To sleep to the best of my ability.

Then in 2010, I heard about the research that Vanda Pharmaceuticals was doing. They were working on developing a medication that would help remedy this problem. Well, they did just that and in 2014 they were given FDA approval for the drug call Hetlioz.  I have been on this medication ever since and it has greatly improved my sleeping. Again, it is not a cure and my sleeping is not like it used to be nor is it perfect. I still have moements when I don’t sleep through the night. I still have moments when I wake up and can’t fall back to sleep. But I have better sleep than before and more importantly I have made peace with my sleeping disorder.

Before you nod off, let’s  talk. do you have problems with sleeping or sleep wake disorder? What is your sleep regiment ? What things do you do to make peace with your lack of sleep? Join the conversation and let’s chat about sleeping disorders and blindness.