So what does it take to get a good night’s sleep?
Guest blogger Jennifer Crystal discusses how much Lyme disease can disrupt the sleep cycle and one option for dealing with it.
By guest blogger Jennifer Crystal
Recently I was out for a friend’s birthday. After a couple hours and my third seltzer with lime, the lights in the bar dimmed and the music volume went up. I glanced at my watch: 10:00 p.m. “Pumpkin time,” I said to my friends, rising to gather my things.
“You are starting to look a little orange,” one of them joked.
People who know me and know my story are gracious enough to make light of my early bedtime and let me go like Cinderella, because they know what’s at stake if I don’t stick to a set sleep schedule.
In my early days of illness, before getting an accurate diagnosis, I experienced severe insomnia. No matter how late I went to bed, I began waking long before dawn, listening to the quiet hum of my sleeping household and eventually the incessant chirping of birds outside my window. I tried reading. I tried listening to soft music. I tossed and turned and tried deep breathing exercises, but I could never fall back asleep.
Soon the restlessness crept into the beginning of my sleep cycle. Though I was completely exhausted, I’d lie awake for hours, growing more and more tired and frustrated. I begged and prayed for sleep, bargaining that I’d take better care of myself forever or never say anything bad again or never ask for anything again my whole life if I could please just sleep for ten minutes. But sleep wouldn’t come. I dangled right on the precipice, even snoring in my waking state, hanging in that last moment right before my brain should have turned off.
I tried old tricks of counting sheep. Counting backwards from ten didn’t work. Neither did counting from 100. When I got all the way back to one sheep from 1,000, I gave up and tried singing myself lullabies. These, of course, got stuck in my head, and I spent the night listening to “Twinkle, Twinkle Little Star” try to beat out “All the Pretty Little Horses,” with a side player of “Hush Little Baby.”
This neurological overdrive was one of many signs that something deeper was going on than my original diagnosis of chronic Epstein-Barr virus. I did indeed have that illness, but it was the underlying tick-borne diseases that were upsetting my circadian rhythm.
Finally getting an accurate diagnosis, however, was not the answer to my problems. Once I started intense antibiotic and antimalarial treatment, I experienced a Jarisch-Herxheimer reaction, which is when toxins are killed off faster than the body can eliminate them, making the patient feel worse before better. My sleep disturbances hit fever pitch as the spirochetes burrowed deeper into my central nervous system. When I finally did sleep, it was, unbelievably, less restorative than the endless waking hours. I dreamed in excruciating detail of trauma I’d never experienced: rape, sodomy, stabbing. I might have ten to twelve of these nightmares an hour. I died over and over, yet somehow always lived to witness my own tragedy.
Other dreams were not nightmares but hallucinogenic mish moshes of everything I’d read, heard, seen or thought about. Random people from my past mixed together in crazy scenes. Sometimes I dreamed in levels: instead of waking from one dream, I’d slip into another in which I was telling someone about the previous dream. Often I traveled, exploring places I’d never visited in real life, waking with tired legs as if I’d been walking all night. I’d look up the places I visited in my dreams and find that what I’d “seen” was accurate. I had some intensely beautiful lucid dreams. But while the fodder of my nights was at times fascinating, it was always exhausting. I wasn’t getting the rest I needed to heal.
My Lyme doctor called in various sleep aids. Some helped to a degree, but none touched the dreams. It seemed there was no medicine that could dig as deep into my brain as the spirochetes could.
I did a sleep study at a local hospital. Recognizing my extreme duress, the director of the program immediately swept me away from interns who wanted to diagnose “restless leg syndrome” and took me under his wing. Nationally recognized as a leading researcher, academic and clinician in the field of sleep medicine, this doctor introduced me to a technique called neurofeedback. Similar in concept to biofeedback, neurofeedback is a computer-based technology that re-trains the brain to allow restorative sleep. “Western medicine helps people in crisis,” the doctor said, referring to the heavy prescription sleep aids I’d tried. “But Eastern philosophy gets at the underlying problem; both are necessary for long-term health.”
I was wary that a non-invasive treatment could help my intense symptoms, but I was desperate. I agreed to try a session, which turned out to be a relaxing and easy experience. The doctor placed small sensors on my scalp and ears, similar to those used on the skin in biofeedback. These sensors were connected to a computer that read my brainwave activity and subsequently provided information back to my brain. Throughout the session, I listened to gentle music and watched a visual representation of it on a screen. Every so often I’d notice the music skip. These interruptions, linked to my turbulent brain activity, signaled my brain to self-correct.
During my first few sessions, the doctor showed me a picture of my brainwaves; they were wild, both left and right hemispheres firing so erratically that the data couldn’t fit on the screen. After many training sessions, we watched my brain level out, the waves centering and relaxing. At home, I started to feel the effects of these brain workouts. The crazy dreams started to dissipate. While I still needed a low-dose medication to fall asleep, I was able to sleep restfully through the night. Perhaps most blissfully, I was finally able to fall asleep on my own in the afternoons. These naps relieved some of the daytime exhaustion and allowed for more refreshed evenings.
And that meant I could go out at night. I can now rally and celebrate a friend’s birthday. But I still need to do my part and exercise good sleep hygiene. This means calling an early “pumpkin time,” so that my bad nights remain few and far between and my days continue to be functional. That’s a spell I’m not willing to break.
For more information on neurofeedback or to find a practitioner near you, visit www.zengar.com.
Lyme survivor Jennifer Crystal, MFA, is a writer and health care advocate in Boston. Her website is www.jennifercrystal.com. Email her at jencrystal5678@gmail.com.
In addition to the great relief, this is really fascinating. Is neurofeedback therapy used to heal other issues besides insomnia? Do you find other benefits?
Neurofeedback helps with anxiety, depression, stress, and neurological issues–and has been said to help people perform better at work and in their daily lives. It has great widespread benefits! I highly recommend it.
Emily – Yes, Neurofeedback is used to safely treat a variety of conditions and issues – ADHD, anxiety, stress, addiction, etc. There are more than 40 years of research to prove its effectiveness. Most individuals – regardless of the condition – see an improvement in focus, sleep, processing speed, and significant stress reduction. You can find board certified providers at http://www.BCIA.org Best! Dr. Roseann Capanna-Hodge Ridgefield and Newtown, CT
Jen’s description of overcoming her severe sleep disorder has lessons for all of us, even those of us with no trouble sleeping. Just like children, adults sleep better with a rested mind and similar routine. Thanks for sharing your wisdom and experience, Jen,
Interesting post. I’m curious—were the wild dreams attributed directly by the physician to the spirochetes, or did the nightmares have some other source? Some medications, for example, are known to induce “crazy” dreams.
They were attributed to the spirochetes–and to babesia. They began before I started any medications.
I never slept past 2 hours before wild dreams, recently I went to a Reiki session where the woman said “You have NO energy in your legs.” (neuropathy) I massage my calf’s every morning now and am sleeping deeper. Start slow to avoid restless leg. Also a cranial massage helps because our pineal glands are thrown off by the disease, mold, pollen and distressed emotions.
Your sleep problems (not enough sleep and some anxiety) are being caused by Bartonella and the vivid dreams are Babesia. Hard to treat but definitely curable.
Sounds wonderful : I too used to have a job and insurance to help me pay for my desperate search for any kind of help, feeling that modern medicines would cure me. It just isn’t in the cards after this stuff takes control of all of one’s body.
For daytime energy, a good body scrub is very helpful, if the nausea and exhaustion will allow you to do it. As for sleeping, I take an old, cheap neuropathy drug @ $4.00 per month, called Amitriptylin, generic for Elavil. This was a God send for me as there was never any comfort in the daytime and the pure miserable torture of trying to get to the point of even dozing off at night, was in itself a nightmare of trying to ignore an itch somewhere, then a pain in random body parts, then a tickle or the sensation of a bug crawling on me, while getting up, laying down, turn this a way, then that way, then the phobias of scorpions in the bed, or snakes on the floor; and on and on and on relentlessly; and needless to say getting out of bed in the morning meant I was more tired than the night before.
We should all pray for our children, that an immunization be developed and implemented quickly, as lyme is certain to skyrocket shortly.
Wow… good article. This sounds very similar to my experience over the last few years. I’d kind of realized that I had nightmares when I herxed, but not connected the insomnia the Lyme!! I tried neuro feedback once years ago for pain management, and found it helpful … never realized it could be used for sleep. Thank you so much … I think this will really help me. The insomnia is one of the symptoms I had no idea how to deal with.
By the way restless legs WAS one contributing factor for me, and another Lymie I met at an Ozone clinic in Cyprus (awesome place!!) helped me to realize that I needed more topical magnesium. Added MgCl baths to my routine (with a little Copaiba) as a detox, and they *really* helped. (restless legs gone now). I’ve since learned that Lyme often leads to low magnesium, and that causes many aches and pains, and cramps. I was using Epsom salts, but then learned I have MTHFR-667 and a few other SNPs (23&me) and can’t process sulfur well… so Mangesium ‘flakes’ (MgCl) work much better for me. You can get some good lotions and oils from ‘ancient minerals’ that work wonders too, if you don’t have time for a bath.