Darden returns to explain how she ended up a fixing a common problem in ME/CFS and FM – low cortisol levels and feelings of agitation and “wiredness”. Please note Darden is a patient, not a doctor.
Adrenal exhaustion or fatigue is a term used in alternative medicine to describe a condition of diminished adrenal function found in persons who have experienced unabated stress over long periods of time. The adrenal glands produce the hormones epinephrine (adrenaline), norepinephrine (noradrenalin), cortisol, dehydroepiandrosterone sulfate (DHEA), aldosterone and small amounts of estrogen and testosterone.
These hormones play an important role in helping the body cope with stress and moderate immune function. Symptoms of adrenal exhaustion include fatigue, low blood pressure, sleep disturbances, low blood sugar, decreased sex drive and cognitive impairment.
Adrenal exhaustion is a controversial diagnosis and is not recognized by mainstream endocrinologists who only diagnose and treat adrenal insufficiency or Addison’s disease, a different condition caused by inadequate production of adrenal hormones. Alternative medical physicians diagnose adrenal exhaustion primarily with saliva tests that measure cortisol levels at four intervals throughout the day as well as DHEA. Healthy cortisol levels follow a circadian rhythm with the highest levels occurring in the morning and the lowest levels around midnight.
Adrenal exhaustion is treated, by taking for a period of time, hydrocortisone (Cortef), which is thought to give the adrenal glands a chance to rest and build up hormonal reserves. Some physicians prescribe adrenal cell extracts obtained from bovine glandular tissue instead of hydrocortisone. The hormone DHEA is often prescribed as well.
Alternatively physicians also treat adrenal exhaustion with a variety of nutritional supplements including Vitamin C, licorice root, Siberian ginseng and ashwagandha. After a period of several months cortisol levels are retested.
Most person with chronic fatigue and fibromyalgia suffer from adrenal exhaustion and will produce irregular results on a saliva stress test. It is postulated by many researchers that the “hypothalmic-pituitary-adrenal axis” is out of balance in patients with CFS & FMS. This axis is a complex set of interactions between endocrine glands, which control reactions to stress and regulate many body processes including digestion, the immune system and energy storage and expenditure. Addressing low adrenal and thyroid function is an important part of bringing the axis back into balance.
I was first diagnosed with adrenal exhaustion in 1990 by Dr. Jonathan Wright, a well-known leader in the field of alternative medicine from Kent, Washington. Dr. Wright diagnosed me with adrenal exhaustion using a baseline 24 hour urine collection test that measured adrenal hormones and then after an injection of adrenocoricotropic hormone (ACTH) a hormone secreted by the pituitary gland that stimulates the release of adrenal hormones. Several of my adrenal hormones were in low ranges at baseline and/or failed to respond to ACTH.
Dr. Wright prescribed hydrocortisone, which I took for six months and DHEA, which I took for five years. Although I felt some increase in energy initially from taking these hormones the improvement was not long lasting.
Long before being diagnosed with adrenal exhaustion I had adopted lifestyle changes that are recommended to manage this condition including avoidance of alcohol, caffeine and sugar; moderate exercise in the morning; a short nap in the early afternoon; and adhering to a regular bed time.
Over the next 15 years I was repeatedly diagnosed with adrenal exhaustion as measured by saliva stress tests prescribed by naturopathic physicians. My cortisol levels remained well below normal throughout the day and night in all these tests except when I was taking hydrocortisone, which I tried several more times. I also tried various herbs and nutritional supplements including licorice root, ginseng, ashwagandha, and vitamin C as well as several years of acupuncture with no significant benefits.
Beginning in 2005 I experienced a series of breakthroughs in my health that alleviated chronic fatigue and brought my body back into balance. The first one was addressing low thyroid function by treating Wilson’s Low Body Temperature Syndrome or Wilson’s Syndrome by taking for a period of several years the thyroid hormone T3 obtained from a compounding pharmacy.
Initially I had to take a large dose of T3 to bring my body temperature up to 98.4 degrees, then over time I needed to take less and less until my body temperature and thyroid function “reset”. Returning my body temperature to normal relieved a certain kind of fatigue I had experienced for over 25 years.
The second breakthrough began in 2007 when I started Oral Systemic Balance, a treatment developed by a TMJ dentist named Farrand Robson that employs oral appliances to help patients breathe better and restore balance to the autonomic nervous system. OSB took a huge layer of stress off of me physically but despite these significant improvements in my health I still suffered from some fatigue and when aroused emotionally I would go into a “wired” or hyper agitated state.
Saliva stress tests still measured very low levels of cortisol. I suspected that I might be suffering from some kind of post traumatic stress from living in an exhaustive state for many years so I started to investigate therapies to address this.
The field of biofeedback has the potential for reversing many maladaptive stress patterns by using instruments that measure various physiological functions and learning through practice how to alter these patterns. It has the advantage of not producing side effects associated with pharmaceutical drugs.
In the mid-1970’s after first developing CFS I had a positive outcome training the tight muscles in my neck using surface EMG biofeedback to alleviate chronic headaches. In the late 1990’s I learned a surface temperature biofeedback technique called hand warming that alleviated night sweats.
Neurofeedback Take I
Then in the mid-2000’s I began to explore a third form of biofeedback called Neurofeedback or EEG biofeedback, which provides feedback on the electrical activity of the brain or brain waves measured with an electroencephalograph (EEG). Various amplitudes or rhythms of brain waves correspond to different states of consciousness. For example delta waves correspond to deep sleep, theta to dream-like states, alpha to meditation and beta to mental focusing and problem-solving.
In neurofeedback training a person learns to manipulate brain waves through visual and auditory feedback to produce desired brain wave patterns. It is used to help with various neurological conditions including depression, addiction, attention deficit disorder (ADD) and post traumatic stress disorder (PTSD).
In 2008 I did over 60 sessions of neurobiofeedback training with a system called NeuroCare (now called NeuroOptimal) developed by the Zengar Institute. Zengar’s system does not target or train specific brain wave patterns nor does it treat different conditions with different protocols, rather it is designed to train the entire brain to function more efficiently.
Training sessions involve sitting in a comfortable chair with sensors placed on either side of the scalp that pick up brain wave activity. Feedback of brain wave activity is obtained from watching a video of moving graphic designs on a computer monitor and listening to music. The process is monitored by a technician who adjusts the thresholds.
When the brain is unproductive the video or music is interrupted and when the brain makes appropriate adjustments the video and music restart. I noticed an improvement in my cognitive abilities from this therapy but experienced no other significant results.
Neurofeedback Take II
Next I tried a different form of neurofeedback called LENS or Low Energy Neurofeedback System. Developed by Len Ochs, a pioneer in the neurofeedback field, LENS operates entirely different from traditional EEG or neurofeedback training and in fact it does not exactly fit the definition of biofeedback. Rather than training the brain with feedback to produce desired brainwave patterns, LENS feeds back a person’s own brain waves at a slight alteration or offset.
People are hypersensitive to their own brain waves. If you feed back the dominant brain waves to a person it can amplify these waves creating an unstable condition provoking for example a seizure in someone with epilepsy. Ochs discovered that if you feed back a person’s brain wave at a slight offset, the brain waves will lose amplitude and break up dysfunctional or stuck patterns. This disruption causes the brain to heal on its own.
The treatments are very short, lasting only a few seconds in duration and involve no conscious effort on the part of the patient. The practitioner determines the variation of the feedback offset based on the patient’s history and previous response to treatment. LENS also differs from other forms of neurofeedback in that is treats 21 different sites on the scalp, one at a time in a specific order determined by a brain map of the individual.
The intensity of the radio waves in the electromagnetic field used in LENS are extremely weak, less than a trillionth of a watt. The changes produced however are quite profound and usually permanent requiring no further treatment once a course of LENS is completed. LENS is effective for treating dysfunctions of the Central Nervous System including autism and head injury. It is especially effective for those that suffer from trauma, both psychological and physical.
In August 2009 I started LENS treatments at Ochslabs, the LENS center in Sebastopol, California working with Len Ochs’ partner, Cathy Wills. Cathy told me that my case was particularly difficult due to my severe sensitivities. We started treating one site per session at a large offset, once a week. After each treatment I felt a shift in my energy and symptoms, sometimes feeling worse for a period of hours or days.
My breakthrough came after session four which was followed by a 14-day roller coaster of symptoms, including every kind of headache I had ever experienced, anxiety, depression and gastrointestinal pain. When the symptoms finally subsided, I felt much better than before the treatments and started for the first time in over ten years getting some long stretches of deep sleep.
After this positive response to LENS, I began working with a practitioner in my area. Over time I was able to tolerate treatments with no adverse reactions at a shorter offset and then two treatment sites per session, signs that my brain was healing. I observed a general calming of my nervous system and the chronic symptoms of dry mouth and loose stools went away completely and never returned.
I continued LENS treatments on and off for two years. After two years of treatment my cortisol levels as measured by saliva stress tests rose to normal levels with the exception of slightly low levels during the afternoon. During this time I was not pursuing any other therapy or taking any drugs or supplements.
After a break in treatment of a year I did another year of treatments in 2014. During this time my symptoms of occasionally becoming agitated or “wired” when emotionally aroused completely disappeared and my most recent saliva stress test showed normal cortisol levels throughout the entire day and night.
Rewiring the Brain to Improve the Adrenals
In conclusion I think that my symptoms of adrenal exhaustion both subjectively, and as measured by cortisol levels, were caused by maladaptive stress patterns of the brain. In other words there was nothing wrong with my adrenal glands, rather my brain’s regulation of my hormones. LENS neurofeedback training was successful in reversing this.
Similarly my low thyroid function was also a maladaptive stress pattern reversible by taking incremental doses of T3 according to Dr. Wilson’s protocol. This unique response of down regulating physiological functions in response to overwhelming physical stress is characteristic of CFS and FMS.
Fortunately I found therapies to correct down regulation of my endocrine system, which have contributed significantly to my quality of life. It is important to note the LENS neurofeedback did not resolve all of my remaining CFS symptoms. It did not help with fibromaylgia muscle pain after exertion, or lessen my sensitivities to foods and drugs or substantially restore my disturbed sleep.
In my opinion CFS and FMS are multifaceted conditions that require a variety of treatments to improve health and well-being.
- Check out more of Darden’s blogs here.
Lens Neurofeedback Resources (added by Cort)
Traditional Neurofeedback vs Traditional Neurofeedback
Share your pain, make friends, find new treatment options, check out recovery stories and more in the Health Rising ME/CFS, FM and Chronic Pain Forums here