It's 10:30pm. You're lying in bed with the television and lights off, your cell phone off, with the battery possibly removed, and in good spirits and adamant that tonight you will get a good night's sleep. But before you know it, it's 1am in the morning and the only thing productive you've done since hitting the sack is think about how you can't fall asleep no matter how hard you try. That was me tonight.... I have been up and about, and wide awake ever since, even though I am exhausted all day and desperately need sleep for my body to heal....
Insomnia. It's the only symptom of Lyme Disease that doesn't occur while a person is sleeping. You might need a second to take that one in. Insomnia includes not just an inability to naturally fall asleep, but sometimes also the inability to stay asleep for the entire night. Not everyone with chronic Lyme Disease experiences insomnia, and some experience it at different intervals throughout treatment. The cause for each individual's insomnia can be different, and even a combination of factors. It's a very familiar pattern - sleep (or in my case exhaustion but inability to nap) all day and stay awake all night. More information on the causes of Lyme-induced insomnia can be found in Dr. Richard Horowitz's book "Why Can't I Get Better: Solving the Mystery of Lyme & Chronic Disease".
Personally, I have found a way to fall asleep most nights lately - 10mg Melatonin, magnesium, lyrica (for muscle pain), double dose herbal sleep aide, hot packs on my cramped muscles and about a paragraph of a book. What I have not discovered is a way to stay asleep or gain restful sleep. I consistently wake around 1pm and then again by 3:30/4am, at which time I am done sleeping for the night and may as well get out of bed. If I miss the opportunity to fall asleep at night because of ie. stress, over-tiredness, lack of winding down, muscle pain, headache/brain heaviness or digestion troubles I will remain awake for the entire night. At a certain point I admit defeat and try to achieve something with my night so that I don't feel so bad when I am wandering around in a daze and not able to accomplish anything the following day.
Insomnia doesn't mean you don't need sleep
It's foolish to think that just because you're not tired, your body doesn't need or desire that all important rest, or that the body itself somehow chose to stay awake rather than sleep. The body is under the influence of a bacteria, and possibly other pathogens, that greatly influence its own chemistry. So it's not the body that doesn't want to sleep, but rather the body under the influence of pathogens giving the illusion that sleep is not desired or needed.
Sleep is essential for healing from chronic Lyme Disease
In the end, it's going to be the immune system that puts the final nail in the coffin for those who heal from chronic Lyme Disease. A good antibiotic will kill the pathogens it was designed to kill, but it will be up to the immune system to not only do the same, but also removes the toxins left over that cause chronic inflammation (i.e., symptoms), and to ultimately keep the bacteria at bay and suppressed. Once the Lyme bacteria is suppressed and the immune system has complete control, then grounds are created for a person to be asymptomatic or achieve remission. Sleep deprivation directly results in an even more compromised immune system, and when the immune system is down, the pathogens are up.
Sleep medications have been unsuccessful for me as I have battled with insomnia and lack of restorative sleep over the past few years. I have tried several prescribed versions and they have had an opposite effect in my body, causing my brain to work even harder to overcome the buzzed feeling that they give me. An interesting study at the sleep clinic, conducted two years ago when I was struggling with severe insomnia, showed my brain activity was creating arousals about every 5 minutes. Either the pain or what we now know is lyme disease has been keeping my body and brain on high alert!
Because of the importance of sleep to my recovery, Dr McShane (LLMD) has suggested I go to bed as soon as I become exhausted in the evenings - aim for 9:30 lights out. I may be able to squeeze in a couple more hours of sleep by going to bed earlier every night. I am up for trying anything at this point so if you are unable to get hold of me after 9pm, I have probably turned off my phone and am winding down and going about my sleep inducing routine!
...parts of the information in this blog post were taken from a posting on the hamilton region lyme alliance (thanks Jeanne...)