The ability to get a good night’s sleep was an elusive struggle for me personally for 25 years and required incredible patience and perseverance to cope with.
When I first became ill with chronic fatigue and headaches in 1973 I slept quite well. Sleep in fact was one of the few things that provided some relief for me if only a mental break from dealing with my condition. Several years into my condition my sleep became more fragile. If I became overtired or stressed it was more difficult for me to fall asleep. Getting enough sleep was crucial for me to function and I started sleeping with earplugs and put up shades to darken my room, which at least psychologically seemed to help. Avoiding alcohol, caffeine and sugar reduced the stress on me physically and improved my sleep. I also adopted the habit of taking an hour nap after lunch everyday and continue to do so to this day. Even after a good night’s sleep I usually have a significant dip of energy in the early afternoon and need to lie down and rest. This has been very helpful in recouping some energy for the remainder of the day. About five or six years into my illness I reached a point where occasionally I had to take off an entire day and rest so my body would unwind enough to sleep the following night. My life became a curious juggling act of taking care of myself physically and moving on with the goals and activities of my life.
As I pushed against fatigue to accomplish things, which included completing my college education, pursuing a part time career as a piano teacher and musician and becoming a mother, I started to live increasingly in an adrenaline type state. I think that most people can relate to this when they occasionally pull an “all nighter” to finish a project or go several days without sleep due to a crisis. It’s an unsettling feeling to be living in this “wired tired” state and it takes incredibly mental strength to carry on in a sane, calm manner when one’s body is so out of balance. Fifteen years into my illness I was living in this state a lot of the time and sleeping very poorly. My sleep was disturbed by periods of intense heat and sweats that woke me up every night around 2:45 am and lasted several hours. Then the periods of heat increased to begin around 11:00 pm and lasted most of the night. By 1993 my health was in a crisis due to lack of sleep.
In 1991 I took up the practice of yoga, which I thoroughly enjoyed. Not only did it keep me in great shape physically, I learned how to maintain a meditative state, which helped me through the difficult nights. When my night sweats were intense I would get up and sit in a comfortable chair and do yoga breathing and meditate through the ordeal. After three or four nights of this my body would eventually collapse and I would sleep soundly through one night, the next morning waking up thoroughly exhausted as if I had come out of some storm. Then gradually as my energy returned I would sleep less and less well and repeat the cycle. My moods and mental state did not correspond with my insomnia. I worked with an acupuncturist for a year a half who diagnosed my condition as "kidney yin deficiency". Initially the treatments were effective in dispersing my night sweats and improving my sleep but their effects gradually lasted for shorter amounts of time until they became totally ineffective.
I have never tolerated pharmaceutical drugs well. Avoiding pain relievers, stimulants and sedatives of all kinds is one of the key ways I managed my health condition and relieved my headaches. This also applied to various herbs and natural remedies that are prescribed for insomnia including homeopathic remedies, Chinese herbs, valerian, melatonin, gaba, and 5HTP. By the mid-90’s however I was so desperate for relief that I was open to trying medication. I went to a sleep clinic and was prescribed Ambien, which worked for about three days before I built a tolerance to it and I tried the antidepressants Trazodone and Doxepin, which I could not tolerate at all. I then went to California to see a neurologist named Dr. Jay Goldstein who was treating chronic fatigue patients with drugs. Dr. Goldstein prescribed Neurontin (Gabapentin), which allowed me to sleep for the first time in many months. There were no adverse side effects other than feeling a bit intoxicated at times during the day and Dr. Goldstein assured me the medicine was very safe. After about a week the drug began to loose its effectiveness so I increased my dose and continued to do so until after six weeks it did not work at all. The withdrawal from Neurontin was the most harrowing experience of my life causing severe depression, nausea, and headaches lasting several months. I tried several trials of Klonopin during this period, which helped me sleep for two and a half week before it lost its effectiveness and sent me through a similar but less intense withdrawal as Neurontin. Finally I resigned myself to the fact that medication only worsened my situation and I toughed it out through an unimaginable hell lasting six months where I burned up with heat every night, slept very little and felt suicidal. I made it through this period by leaning on a network of friends and family as I struggled with my own will to live.
(Lyrica, the first FDA approved drug for the treatment of fibromyalgia is very similar to Neurontin sharing similar anticonvulsant mechanisms of action. Fibro friends report that is can help with sleep but has bad side effects - fatigue, pain, weight gain, cognitive problems- and when discontinued causes serious withdrawal symptoms).
Nine months after going off Neurontin I made the acquaintance of a neurobiofeedback therapist in my community. She taught me a simple biofeedback skill called “hand warming” which literally saved my life. Basically one learns through biofeedback how to raise the temperature of one’s hands by observing a digital temperature display of a heat sensor strapped to one’s finger. When the temperature reaches 95 degrees, a relaxation response occurs in the vascular system. I bought an inexpensive indoor-outdoor thermometer and practiced this skill on my own until I mastered it. When I experienced night sweats this skill would actually stop the heat and allow me to go back to sleep. I had to repeat this skill 5-10 times a night but I was sleeping. I also worked with the therapist using neurobiofeedback training with alpha-theta brain wave patterns that facilitated a deep state of relaxation thereby perfecting my meditative skills. My depression lifted and the quality of my life improved significantly.
My biofeedback skills were helpful in managing the stress on me physically and helped me get sleep if only in a very disrupted way but I was on a slippery slope. Over the next few years I became increasingly more exhausted. I accommodated my yoga practice to be less rigorous physically and took less on professionally. Then in the fall of 2001 at the onset of menopause I developed fibromyalgia. My muscles no longer could recover from any repetitive sustained exertion without causing pain. I had to give up my yoga practice, walking, gardening and playing music. My sleep became even more interrupted, sleeping only 20-minute stretches. My health was at the lowest point ever. I was devastated but I did not give up. Since that time I made big breakthroughs in understanding and recovering my health including stabilizing my thyroid function and improving my breathing through Oral Systemic Balance, which I discuss in other posts of this blog. The stress on me physically lessened considerably and my night sweats dissipated but my sleep remained very disturbed with multiple (10-15) awakenings a night.
In January 2009 I received from a friend the book “Glutathione” by Dr. Robert Keller a medical doctor whose specialties included chronic fatigue and fibromyalgia. Keller developed a formula of nutritional supplements called MAX GXL that increase gluatathione levels in the body. My friend does not have CFS/FMS but suffered most of her adult life with insomnia. She started sleeping immediately after starting on MAX GXL, thus changing her quality of life. She thought it might be of interest to me. Glutathione is a major agent of detoxification and is concentrated in the liver and since I have long known that impaired detoxification and liver function were key components of my health condition this caught my attention. Low glutathione levels can also contribute to insomnia. MAX GLX is sold through multi-level network marketing. The associate who my friend purchased it through has fibromyalgia and started sleeping through the night after being on the product for two months. I started taking MAX GXL in late January 2009 and initially had a good response sleeping well for about five nights however I was very tired during the day. Then my disturbed sleep pattern returned. I took MAX GXL for 6 months gradually increasing my dose but my sleep remained disordered and problematic.
The big breakthrough in my sleep happened in the fall of 2009 when I began "Low Energy Neurofeedback Systems" or LENS treatments. LENS is a unique form of neurofeedback developed by Len Ochs where the brain receives feedback of its dominant brainwave frequency at an offset. The short sessions which last only seconds in duration produce profound shifts away from dysfunctional brain patterns and result in re-integration of the brain in more healthy and flexible patterns. My sleep started to improve after four LENS sessions when I started to get some long stretches of deep sleep several nights a week. LENS is a process and my sleep remains vulnerable to agitations of my nervous system. At the time of writing this blog I am in treatment and continue to improve.
Recently I discovered a treatment for insomnia using nanotechnology homeopathic patches placed on acupressure points at night that stimulate the production of melatonin and serotonin. The patches are non-transdermal, are non-addictive and have no side effects even for highly sensitive individuals. Some individuals with CFS and FMS have reported good results. For myself the patches did not result in deep sleep or prevent disturbances in my sleep however they keep me calm and restful during a bad night. They are produced by a company called Lifewavewww.lifewave.com.