The ability to get a good night’s sleep has been an elusive struggle for me for over 25 years and has required incredible patience and perseverance to cope with. The following post is a summary of my experience with insomnia and the therapies I have pursued to address it.
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 relief for me as an important break from coping with my condition. Several years into my illness 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. Adherring to a strict schedule where I go to bed and get up at the same time each day and not eating or doing stimulating activites after dinner became a helpful habit. 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 I 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 was a difficult 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 2:45am and lasted several hours. Then the periods of heat increased starting 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 a storm. Then gradually as my energy returned I would sleep less well each successive night until I crashed again. My moods and mental state did not correspond with my insomnia. I worked with an acupuncturist for a year and 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 lasted for shorter amounts of time over 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 prevented headaches. I tried a number of "natural" remedies without success including magnesium, homeopathic remedies, Chinese herbs, valerian, melatonin, gaba, 5HTP and "natural" progesterone. I had a good initial response to some of these things but typically they only worked well one night and then I became intolerant of them. Another natural sleep solution that I tried was the Nikken sleep system which consists of static magnets built into a mattress but this was not helpful and began to agitate my system after several weeks of use.
By the mid-90’s 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. In 1997 I traveled 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. Dr. Goldstein assured me the drug 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 the drug Klonopin during this period, which helped me sleep for two weeks before it lost its effectiveness and sent me through a similar but less intense withdrawal. Finally I resigned myself to the fact that medication only worsened my situation and I toughed it out through a a hellish nine 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 in a disrupted way but I was on a slippery slope. Over the next few years I became increasingly more exhausted. I accommodated by making my yoga practice less rigorous physically and decreasing my personal commitments. Then in the fall of 2001 at the onset of menopause I developed fibromyalgia. My muscles could no longer recover from any repetitive or sustained form of exertion. I developed chronic pain and injury in any muscles I used. 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. Eventually I found the key therapies that brought about a slow gradual recovery of my health. Those therapies were stabilizing my thyroid function with a thyroidectomy and treating Wilson's Low Body Temperature Syndrome, improving my breathing through Oral Systemic Balance, pursuing a unique form of neurofeedback called LENS and treating SIBO (small bacterial overgrowth). I experienced my recovery as a slow moving together of the "wired tired" extreme states and a lessening of physical stress. My night sweats dissipated however my sleep remained disturbed with multiple (10-15) awakenings a night.
In January 2009 I tried taking MAX GXL, a nutritional supplement formula that increases the body's production of glutithione. It had helped several friends who suffered from long term insomnia. 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 I thought this product might be helpful. I initially had a good response to MAXGXL sleeping well for about five nights but 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.
Some individuals with CFS and FMS have reported good results from a treatment for insomnia that uses 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. For myself the patches did not result in deep sleep or prevent disturbances in my sleep. They are produced by a company called Lifewave www.lifewave.com.
Cranial Electrotherapy Stimulation or CES is another non-pharmacological treatment for insomnia that I tried. CES employs mild electrical stimulation from a small unit powered by a nine volt battery to clip-on electrodes attached to the earlobes or pre-gelled electrode pads placed behind the ears. Recommended usage is 30-45 minutes once or twice daily. Many people experience a relaxed alertness during sessions and a gradual diminishing of symptoms of anxiety and depression and a normalization of sleep patterns. The therapy is thought to stimulate pre-stress homeostasis in the brain. I tried CES for two sessions. Unfortunately the sessions produced increased muscle tone at the base of my skull, mild headaches, fatigue and depression which lasted for a week. For more information on this modality which is a good alternative to drugs for those that are not as sensitive as myself go to: www.cesultra.com.
Another non-pharmacological treatment for insomnia that I tried was Earthing. Discovered by Clinton Ober, this therapy uses conductive floor mats and bed sheets that are "grounded" via a cord plugged into an electrical outlet with a ground system or to a rod in the ground. Many people including those with CFS and FMS have reported improved sleep and a reduction or elimination of chronic symptoms by sleeping grounded. I used the products for three weeks, which produced a gradual aggravation of all my chronic symptoms including insomnia. The therapy amplified the buzzing or tingling that I have in my feet and caused me to have brain fog, a symptom that I had never experienced before. For more information go to: www.earthing.com.
I experienced some improvements in my sleep when I started LENS treatments in the fall of 2009. LENS or "Low Energy Neurofeedback Systems" 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. LENS successfully treated symptoms of adrenal fatigue and permanently raised my cortisol levels to within normal ranges as measured by saliva testing. After starting LENS I began to occassionally experience nights when I would get a 3 of 4 hour stretch of deep sleep but this was not consistent.
I also explored a form of biofeedback training called HeartMath that measures heart rate variability (HRV), which an important indicator of physiological stress and emotional flexibility. The technology called emWave analyzes the beat to beat changes in the time intervals between heart beats providing visual and auditory feedback via a computer program or hand held device. It was developed by Doc Childre and the organization he founded, the Institute of HeartMath, which has conducted years of research on the dynamics of emotional physiology and heart-brain interactions. When people experience stressful emotions such as anxiety, irritation and anger, their heart rhythms become irregular and incoherent, which impacts their health and sense of well-being negatively. When people experience positive emotions such as appreciation or love their heart rhythm pattern becomes more ordered and coherent. The "Quick Coherence Technique" is a three step program that teaches the user to create positive heart rhythms and relieve stress. Step 1 focuses on the area of the heart, Step 2 focuses on the the breath using a visual breath pacer, and Step 3 focuses on visualizing a positive feeling, activity or event. Over time the user gains skills at mastering this "coherence" technique at increasingly more challenging levels which can improve health, energy, mental clarity and emotional balance and sleep. I practiced HeartMath on a daily basis for several months but was unable to achieve coherence in any consistent way by following the three step technique. After consulting with person at HeartMath I tried a breathing technique he recommended where I slowly inhale to full capacity and slowly exhale pushing my stomach as far in as possible to push out all the air. Doing this exaggerated breathing technique I am able to achieve coherence consistently even at advanced levels. Unfortunately I did not experience any improvement in my sleep after several months of further practice with this technology. For more information go to: www.heartmath.com.
In the spring of 2013 I began a new phase of Oral Systemic Balance treatments with Dr. Farrand Robson. In the four years since I was a patient the science of OSB had advanced considerably in large part due to the addition of heart ultra sound equipment and EKG equipment to diagnose problems with oral balance. Robson discovered that when a person has difficulty maintaining ease of breathing due to the anatomy and position of the tongue in the throat this causes stress on the autonomic nervous system. Robson makes changes to the contours and positions of his appliance that correspond to changes in the heart. Over a nine month period which included several long appointments with ultra sound and EKG equipment as well as multiple adjustments, Dr. Robson modified my oral appliances and improved my cardiovascular function. I now experience more nights (2-3 a week) when I get a long (3-4 hours) stretch of deep sleep but I still experience many nights when I sleep lightly throughout and wake up frequently.
The quality of my sleep improved by taking the herb ginger root. I started taking 2 550 mg. capsules with breakfast and dinner originally as a treatment for Small Intestinal Bacterial Overgrowth. Ginger root is supposed to help with gut motility but for some reason it helps my sleep. I experienced further improvement in my sleep by taking Diamine Oxidase (DAO) an enzyme that breaks down histamine in the gastrointestinal tract. I take 60,000 units or 3 capsules with each meal. DAO supplements are supposed to prevent food reactions to histamine. This is not the case for me, however taking DAO does help my sleep. I continue to explore treatments that might improve my sleep more. Despite my improvements I still find myself patiently waiting for sleep many times at night.
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Posted by: bridesmaiddresses | April 12, 2011 at 02:18 AM
I, like you have suffered from insomnia for many, many years. I have tried many treatments but little worked for me. I also found relief when I started yoga classes but the benefits soon wore off after continued sessions. I may have to take a look at LENS to see if it can help me, like it has helped you to a certain degree.
Great post by the way.
- Paul
Posted by: Paul | January 16, 2012 at 02:37 PM