One of the first things that makes us realize that there is something wrong with us is the inability to perform intellectually like we once did. We seemingly accept the increasing pain, the muscles spasms, the insomnia, but when we keep forgetting our own phone number, red flags go up.
We lose things - misplace others - on a route we know, we get lost - we forget where we're going - shopping lists lose their importance because we keep forgetting to bring them - we lose our car in parking lots time and time again - we come home from shopping and realize we bought the exact same things the day before. We forget friends' names. We stop in mid-conversation because we've forgotten what we were talking about. We start using gadgets and date books in order to keep track of our normal daily to-do list. If we handle our own checkbook, we gradually have more and more trouble with it. Even taking a shower is a major effort because we don't remember whether we've rinsed the shampoo out of our hair - we lose the washcloth - we drop everything - we forget whether we rinsed all those hard-to-reach areas. What were once functions that we handled without thought, we now need to consciously review every aspect of the process before it occurs.
We laugh about it. We learn to "cover" the errors with laughter. But we're embarrassed and silently start questioning our own sanity. We worry about brain tumors and Alzheimer's because we know the problem is far more extensive than other people are seeing. Sometimes I can't even rely on myself and that's not good.
If we tell our doctor about our problems, we are often easily placated by the doctor's words. "Everybody starts having trouble as they get older." "No, you don't have Alzheimer's - just FMS." "Oh, you're just depressed." I
We take comfort from such dismissals. We really don't want to believe that something is really wrong with our brain. So we joke about it with each other - further dismissing its importance. Someone once said, "If it wasn't for brain fog, I wouldn't get any exercise!" Now I have to look at the humorous side of this and call it "SOMETIMERS" because "sometimes" I remember and "sometimes" I don't.
But something is wrong. This is not the everyday forgetfulness that everyone experiences from time to time. This is a 24-hour, seven day-a-week continual struggle to appear and act normally. It's been proven by SPECT and PET scans of the brain. It really IS all in our heads - and it's real. Unfortunately, the full extent of our brain fog may not be known until a moment of clarity. That moment may be as simple as finding your "lost" glasses on the end of your nose, or as complicated as finding out years later that you made a stupid little mistake when you filed your taxes.
What part of the brain controls all these things? Most often cited is the right temporal lobe. In plainer English, that's the section in the area of the right temple.
Why do we get brain fog? What causes it? What part of our disease creates this cognitive dysfunction? The following is a review of some of the major components of it.
In addition to the creation of food allergies by the leaky gut, the bloodstream is invaded by bacteria, fungi and parasites that, in the healthy state, would not penetrate the protective barrier of the gut. These microbes and their toxins, if present in large enough amounts, can overwhelm the liver's ability to detoxify. This results in symptoms such as confusion, memory loss, brain fog.
"The evidence suggests a reciprocal relationship of the immune and sleep-wake systems. Interference either with the immune system (e.g. by a viral agent or by cytokines such as alpha-interferon or Interleukin 2) or with the sleeping-waking brain system (e.g. by sleep deprivation) has effects on the other system and will be accompanied by the symptoms of the chronic fatigue syndrome." "Fibromyalgia, sleep disorder and chronic fatigue syndrome." 1993 Moldofsky H
Here's what doctors have to say:
Dr. M. Yunus: Cerebral blood flow imaging by SPECT (single photon emission computerized tomography) and PET (positron emission tomography), as well as topographic brain mapping with evoked responses using BEAM (brain electrical activity mapping) have been reported to be abnormal in a large majority of patients with CFS, showing a pattern different from normal controls and those with depression. Findings of the above imaging and topographic tests suggest an abnormality of several anatomic regions of the brain in CFS, including the temporal lobe, prefrontal cortex, and limbic structures (hippocampus, amygdala and cyngulate gyrus), perhaps on the basis of neurohormonal dysfunctions. Abnormalities by magnetic resonance imaging (i.e., areas of high signal intensity) have also been described in CFS, but their significance needs to be determined by further controlled studies. Results of SPECT, PET, BEAM or MRI studies specifically in FMS have not been reported, but a good number of patients with CFS who had these tests carried out with abnormal results also had fibromyalgia.
Excerpted from "Chronic Fatigue Syndrome and Fibromyalgia Syndrome: Similarities and Differences" by Muhammad B. Yunus, MD, University of Illinois College of Medicine at Peoria, Peoria, Illinois
Dr. Samuels: But we're talking about CFIDS or chronic dysfunctional diseases; you can span every physiological system in the body. The SPECT scan on the brain shows flow and function. If the temporal lobes are mismatched, you can be sure there will be trouble with memory, recall and concentration. If the frontal lobes are poorly lit, you will see depression.
Excerpted from Dr. Samuels Speaks
Dr. Seastrunk: Why does brain injury becomes a factor years later? CFS is not a psychological illness but is physical with psychological overlays such as stress. Brain dysfunction is associated with abnormal behavior. Dr. Seastrunk developed a questionnaire, called the organic evaluator, for his patients that includes questions involving abnormal olfactory hallucinations (smells and tastes that aren't there); visual distortions (colors, spots, sparkles in outer portion of visual field indicates temporal lobe is injured); oscillopsia (vibration or oscillation of visual field); unable to understand when people are talking to you (left temporal lobe dysfunction); wrong word is used during conversation or go blank in the middle of the sentence; auditory hallucinations (hear noises, clicks, or someone calling your name while the television is on or while taking a shower or using a hair dryer); dizziness (temporal lobe dysfunction); and gastrointestinal dysfunction. 95% of the CFS/MCS patients who take Dr. Seastrunk's questionnaire have demonstrable brain pathology.
Cognitive dysfunction is a right temporal lobe phenomena. Multiple mood swings, trouble sleeping are all temporal lobe abnormalities. Temporal lobe is responsible for understanding what we hear, retrieving and restoring our memories even though the patient may feel they have difficulty with their memory. The problem is actually the retrieval of this information. The card catalog is there but the PWC can't find the right word. Not being able to find the word or you forget what you are going to do, or blocking, is a left temporal lobe phenomena. 30% of people with panic disorder have focal brain injury as a cause according to Dr. Seastrunk's tests.
Deja Vu, the feeling of having been there before, is a temporal phenomena. Jamis Vu, the feeling of being lost while driving your usual way home, is also a temporal lobe phenomena (the temporal lobe has fired).
Migraine or migraine equivalents may also be a result of brain injury.
Excerpted from a lecture by Dr. Jay Seastrunk, Psychiatrist- 6/1/97 CFIDS Conference
Dr. Goldberg: What is causing the basal-constriction in the cerebral arteries? With a cold you will feel spacey, foggy, tired, yet a cold is a virus that doesn't go to the brain. While fighting the virus, the immune system releases cytokines and neuropolypeptides that shutdown blood flow. This has come out of good conferences in Europe attended by 10 or 11 laureates in the room and is now a well accepted physiologic explanation. This is a normal process our bodies go through when we have a cold. With CFS, our bodies are doing this all the time inappropriately.
Excerpted from a lecture by Dr. Michael Goldberg, MD at the 6/1/97 CFIDS Conference
Dr. Goldstein: CFS patients are prone to overestimate their cognitive abilities. Their making of new memories is extremely fragile and disrupted by proactive interference. They do not benefit from memory cues. The making of new memories is easily disturbed by increasing the amount of information presented.
Excerpted from "Chronic Fatigue Syndromes: The Limbic Hypothesis."Dr. Jay Goldstein,1993
Viral: "Virally infected patients are more likely to show cognitive impairment and other symptoms of sub-cortical brain dysfunction." Stealth Virus Testing Center for Complex Infectious Diseases
HPA axis dysfunction: "His clinical evidence states that the symptoms associated with Persian Gulf illnesses appear to be caused by abnormalities in the hypothalamus portion of the brain, which controls many bodily functions. When the hypothalamus malfunctions patients can experience chronic fatigue, fibromyalgia, peripheral neuropathy, arthritic esthesiopathy, chronic diarrhea and bloating, and respiratory problems. "In terms of Neuropsychiatric phenomena they have memory problems, decreased cognitive ability, agitation, compulsive behaviors and obsessive thoughts, vulnerability to mental destabilization and a generally minimal stress tolerance. In my own experience they have subtle but consistent neurological problems like clumsiness, visual disturbance and attentional difficulties." "Persian Gulf Illness : Is It All Just 'In Their Heads?' New Report Shows Evidence of Brainstem Encephalitis In Gulf War Veterans" William E. Baumzweiger, M.D.
"SPECT scans show anterolateral and dorsolateral hypoperfusion, the right hemisphere worse than the left. The right hemisphere deals mostly with novel situations and uses norepinephrine. Norepinephrine is crucial to cognitive novelty. The left hemisphere deals mostly with repetitive, well-routined, pre-learned activities and uses mainly dopamine. Dopamine is critical to cognitive routinization. Flu-like illnesses are known to deplete brain norepinephrine. Regional cerebral blood flow is consistently found to decrease after exercise or any activity that makes the patient worse, for example doing calculations.
PET scans show activation of the dorsolateral prefrontal cortex along with decreased regional cerebral blood flow to the left angular gyrus, part of the neural network involved with tasks that require "willed action". Hypoperfusion and malfunctioning of the inferior parietal cortex leads to inappropriate sensations, behavior and emotions." "Betrayal By The Brain: The Neurological Basis of Chronic Fatigue Syndrome, Fibromyalgia Syndrome and Related Neural Network Disorders." Dr. Jay Goldstein
So what do you do? Perhaps you're still working and notice you are unable to even grasp the simplest part of those new forms you have to use. Perhaps people are noticing that glazed-over look you have as you struggle to understand a new instruction. Maybe you've overdrawn your checking account again - despite superhuman efforts on your part to prevent it. Maybe you're watching the Weather Channel because it's the only channel that makes sense. You're forgetting to take the garbage out. The list is endless on how this cognitive dysfunction can effect your life.
Your personality is changing. You're no longer as spontaneous as you used to be because everything coming into your brain has to be sifted for importance - for nuances you used to catch easily. You're struggling to react appropriately to everyday situations - and it's a constant effort which adds to our stress.
The good news is that Brainfog is reversible, or, at least, the progression can be halted with medications. In fact, the SPECT scan pictures above are actually of a CFIDS brain pre and post treatment (although Harvard neglects to tell us what the treatment involved).
There are anecdotal messages on the lists on various herbs and medications that have helped. Co-enzyme Q10 150mg a day seems to help many people, including myself. Gingko Biloba has adherents. Dr. Lapp says low dose Ritalin seems to jump start the brain (and I find that to be true). NADH helps some people. Neurontin may help with lessening of brain fog.
Because our brainfog is underdiagnosed by our local doctors, there's very little research on treating it - especially in FMS. However, please don't feel that there isn't something that can't be done. I can vouch for that medications listed above do help, and are worthy of you and your doctor discussing the issue.