Understanding Epilepsy – Diagnosis, Treatment, and Alternatives

What is epilepsy and how is it treated? Are there alternative or natural approaches to treating epilepsy?  When it comes to the subject of epilepsy, many people find it difficult to fully understand the disorder and all of its characteristics. Even though signs of epilepsy in people were present centuries ago, epilepsy is a relatively new discovery in the world of health. Before the advancement of medical technology, those with epilepsy might have been look upon by others with confusion.

Epilepsy Incidence
The Center of Disease Control & Prevention states that “2.3 million adults and 467,711 children (0-17 years of age) in the United States have epilepsy”. The incidence of the diagnosis of epilepsy has increased in the last few decades.  There is a higher incidence of seizures among  infants and elderly citizens over the age of 70.

What is Epilepsy? Understanding Epileps
Epilepsy is a term used to express an array of brain disorders caused by seizures. Depending on the type of epilepsy, the disorder may be short-term or long-term. Epilepsy is characterized by a tendency for recurrent seizures. A seizure occurs when nerve cells in the brain signal abnormally causing temporary disruption in brain function. Neurons are overly stimulated which can lead to involuntary muscle spasms or convulsions, changes in behavior and/or changes in awareness or sensation. There are three main types of seizures: generalized seizures, partial or focal seizures and absence or petit mal seizures. Generalized seizures involve all parts of the brain. The Epilepsy Foundation provides the sub-types of generalized seizures in the following:

  • Grand Mal Seizures- unconsciousness and convulsions
  • Myoclonic Seizures- isolated jerking movements
  • Clonic Seizures- repetitive jerking movements
  • Tonic Seizures- muscle stiffness
  • Atonic Seizures- loss of muscle tone


Symptoms Specific to Types of Seizures

Epilepsy Generalized

Generalized or tonic clonic seizures affect the entire brain. The person falls to the floor and shakes or twitches uncontrollably, and is unable to speak.

Generalized or Tonic-Clonic Seizures - With a generalized or tonic-clonic seizure, the person experiences muscle stiffness, loss of consciousness and/or flailing arms and legs. They may lose control of bowel or bladder, may have trouble breathing and turn blue or be foaming at the mouth.

Epilepsy recovery position

 

The generalized seizure may last seconds or minutes. After the seizure, the person may feel very confused and it may take up to an hour for him/her to fully regain awareness of the situation.


Partial or Focal Seizures
– During partial or focal seizures, part of the brain is affected. The part of the brain that is affected will determine which kind of symptoms arise. For example, if the occipital lobe is affected, the person may experience temporary blurry vision or is extremely sensitive to light. Within this category of seizures, there are also simple and complex partial seizures. Refer to diagrams A and B below.

 

A.  Simple Partial Seizures

Simple Partial

Simple partial seizure symptoms include arm twitching, tingling of face or one side of the body, seeing flashes of light, hearing ringing or hissing, sweating or flushing, facial grimacing or turning of head to one side.

 

B.  Complex Partial Seizures

Complex Partial

Complex partial seizure symptoms include chewing movements, wetting lips, and picking at clothing, dysphasia or trouble speaking, and auditory, visual or olfactory hallucinations.

 

EpilepsyAbsence seizures can occur many times in a day. People who have these seizures may exhibit moments of confusion, staring blanking and excessive blinking.  Often absence or petit mal seizures go undetected because episodes can be brief but happen multiple times during the day or multiple times every hour. For more detailed information on each of the seizure types and symptoms, the Epilepsy Foundation is a very good resource.

 

Types of Epilepsy
The type(s) of seizure(s) a person has dictates which type of epilepsy is present. Epilepsy is characterized by the types of seizures a person exhibits. The major types of epilepsy include but are not limited to the following:

  • Idiopathic Generalized Epilepsy
  • Childhood Absence Epilepsy
  • Juvenile Myoclonic Epilepsy
  • Photosensitive Epilepsy
  • Benign Rolandic Epilepsy


Idiopathic Generalized Epilepsy 

Since there are so many different types of epilepsy, we will focus on idiopathic generalized epilepsy (IGE) or primary generalized epilepsy. According to an article written by Selim Benbadis & Leanne Heriaud from Tampa General Hospital, entitled “Idiopathic Generalized Epilepsy,” patients with IGE experience the following type of seizures:

  • Patients with IGE have one or more of 3 types of (primary generalized) seizures: myoclonic, absence and generalized tonic-clonic seizures.
  • One type may be the only or main type in a given patient.
  • Generalized tonic-clonic seizures are convulsions of the whole body lasting 1-2 minutes, and are the most common and most dramatic type of seizures.
  • Absence seizures are brief staring spells with arrest of activity, often with eye fluttering, which last just a few seconds.
  • Myoclonic seizures are very brief isolated body jerks that tend to occur in the morning.

Cause(s) of Idiopathic Generalized Epilepsy 
Idiopathic generalized epilepsy is presumed to have a genetic cause however in many cases of epilepsy, a family history of the disorder may not be present. Patients with IGE who have a family history of the disorder may find it difficult to determine which family member will be born with IGE. The symptoms or seizures associated with IGE often start during childhood or adolescence.  Epilepsy Febrile SeizuresSeizures that occur during childhood and associated with high fevers are termed “febrile seizures,”  and are not uncommon.   Children and adults can have seizures and not be diagnosed with epilepsy. The diagnosis of epilepsy is not made after only one incidence of seizure, but instead it is made after recurrent episodes of seizures.    The Center of Disease Control & Prevention offers some possible theories of events that may lead to epilepsy:

  • Oxygen deprivation during childhood
  • Brain infections such as meningitis, encephalitis, or brain abscessTraumatic brain injury or head injury
  • Stroke resulting from a block or rupture of a vessel in the brain
  • Other neurologic brain diseases such as Alzheimer Disease
  • Brain Tumors
  • Certain Genetic Disorders


Diagnosis of Idiopathic Generalized Epilepsy 

For physicians, it’s challenging to exactly pinpoint the type of epilepsy a patient may have. Patients with IGE have normal intelligence and score in the normal range on neurological exams. One method to most accurately diagnose a patient with IGE is to perform electroencephalogram (EGG) tests.

EEG EpilepsyFlat metal discs are attached to the patient’s scalp to tract electrical activity in the brain. When the patient is having a seizure, the device documents the spikes. Other tests to assist physicians in diagnosing epilepsy include: Magnetic Resonance Testing (MRI), Positron Emissions Tomography (PET) Scan and Magnetic Resonance Spectroscopy (MRS).  A good resource for more information about diagnostic tests for epilepsy is the John Hopkins Hospital School of Medicine, Neurology and Neurosurgery,“Diagnosing Seizures and Epilepsy.” 

 
Orthodox Treatments for Idiopathic Generalized Epilepsy
No cure for Idiopathic Generalized Epilepsy (IGE) currently exists so finding the proper treatment is very important to maintain a healthy lifestyle. People with IGE can live a normal life span.

Prescription DrugsMost patients diagnosed with idiopathic generalized epilepsy take medication to control their seizures. All prescription drugs have side effects. Some have potentially severe side effects.  The medications to help control the incidence of seizures in patients with IGE include but are not limited to the following:

  • Valproate
  • Lamotrigine
  • Topiramate
  • Levetiracetam
  • Ethosuximide
  • Zonisamide

Epilepsy drug side effects

 
 
Alternative Treatments for Idiopathic Generalized Epilepsy  
Alternative treatments for epilepsy include:

  • Ketogenic Diet - A ketogenic diet may be considered to control  IGE seizures. The diet is high in fat and low in carbohydrates. Ketones are formed when fat is used for the body’s source of energy. High ketone levels have been indicated to increase seizure control. ketogenic dietVining concludes, in a research review entitled “Tonic and atonic seizures: medical therapy and ketogenic diet. ” Epilepsia. 2009,  that “Although these seizures are often very difficult to control, some of our medications/therapies have been shown to be effective. Recommendations concerning the efficacy of these therapies and a review of the newer therapies are provided. In addition, the ketogenic diet has been particularly successful in treating these seizures; this is discussed in some detail.”

Ketogenic diets have been successful with pediatric epilepsy in young children. Almost half of children and young people with epilepsy who have tried some form of this diet reduced seizures by at least 50% and maintained this decrease even after discontinuing the diet. Constipation, was the most common negative effect, affecting about 30% of patients, due to fluid restriction.  This led to increased risk of kidney stones.

 

  • Biofeedback- relaxation techniques used to control the body’s functions such as heart beat and blood pressure. Biofeedback may help control seizures that are triggered by stressful life events. In 10 research studies by Tan et al., (2009), Meta-analysis of EEG biofeedback in treating epilepsy, studied 87 patients whose seizures were not controlled by drug therapy.
     
    BiofeedbackThose with contingent EEG biofeedback all the studies showed fewer weekly seizures and a significant reduction (P < 0.05) in the frequency of seizures. The researchers concluded that neurofeedback training is a possible treatment in patient whose seizures do not respond to medical therapies.

     

     
  • Herbal remedies - Since ancient times, herbal remedies have been utilized in Traditional Chinese medicine for epilepsy. 
     
    Herbal remedies

In the US, herbal medicines are regulated by the 1994 Dietary Supplement and Health Education Act.  Herbal remedies might be helpful in reducing the incidence of seizures, however, a study by Saper et al., 2004, “Heavy metal content of Ayurvedic herbal medicine products.” conducted in Boston with 70 herbal medicines found that 20% of these products contain potentially harmful levels of neurotoxic materials such as lead, mercury or arsenic that may cause seizures.  80% of the preparations did not contain harmful products, however.

Ailanthus altissima (Tree of Heaven)
Artemisia vulgaris (mugwort)
Calotropis procera (calotropis)
Cannabis sativa (marijuana)
Centella asiatica (hydrocotyle)
Convallaria majalis (lily of the valley)
Dictamnus albus (burning bush)
Paeonia officinalis (peony)
Scutellaria lateriflora (scullcap)
Senecio vulgaris (groundsel)
Taxus baccata (yew)
Valeriana officinalis (valerian)
Viscum album (mistletoe)

Gingko biloba, ephedra, eucalyptus, pennyroyal, shankhapusphi, star fruit, star anise & sage are some of the herbal medicines containing neurotoxic components which can induce seizures (Samuels et al., 2008), Herbal medicine and epilepsy: Proconvulsive effects and interactions with antiepileptic drugs. and should not be used by epileptic patients.  More research is needed regarding the effectiveness of herbal remedies.

 

  • Essential Oils -  Essential oils can be effecting in calming the epileptic patient and preventing the symptoms of epilepsy.  Such calming oils include: jasmine, ylang ylang, chamomile, and lavender (not spike lavender which is not recommended).  Research was carried out at the University of Birmingham’s seizure clinic which involved using essential oils with individuals who had epilepsy.essential oil massageThe studies used aromatherapy massage to allow individuals to associate the smell of an essential oil with a state of relaxation. Researchers concluded that the aroma triggers relaxation and can help to reduce seizures. According to the  University of Maryland Medical Center, the following essential oils should be avoided: Eucalyptus (Eucalyptus globulus), Fennel (Foeniculum vulgare), Hyssop (Hyssopus officinalis), Pennyroyal (Mentha pulegium), Rosemary (Rosmarinus officinalis), Sage (Salvia officinalis), Tansy (Tanacetum vulgare), Thuja (Thuya occidentalis), and Wormwood (Artemesia absinthium)  For more information about aromatherapy contact the Aromatherapy Council

 

  • Acupuncture -The effectiveness of acupuncture in treating epilepsy has not been statistically significant. A review of acupuncture in epilepsy, “Acupuncture for epilepsy” by Cheuk et al., (2009) included eleven randomized controlled trials.  The authors suggested that studies using a larger sample size with appropriate standardized control groups are necessary to assess the effectiveness of acupuncture on treating epilepsy. They concluded that more studies are needed.

 

  • Yoga- Yoga has been shown to be an effective treatment for epilepsy patients.  In a research study conducted by Sathyaprabha et al., 2008, “Modulation of cardiac autonomic balance with adjuvant yoga therapy in patients with refractory epilepsy,” 18 members performed yoga (breathing exercise, meditation & yoga postures) and 16 members performed non-yoga exercise (quiet sitting & simple physical exercise) for one hour daily for 10 weeks.Yoga GroupThe researchers determined that the yoga group showed significant reduction in seizures (P<0.05) with improved parasympathetic parameters compared to no changes in the non-yoga exercise group. Thus it was concluded that yoga might be used effectively as an alternative therapy in management of autonomic dysfunction in patients with refractory epilepsy.

 

Multiple Chemical and Environmental Sensitivities – Surviving in a Toxic World

Allergy mask

Triggered by air, food, and environmental toxins, new diagnoses are being considered as the root cause of chronic disease.  - istockphoto

WHAT IS IT?
Multiple chemical sensitivity (MCS), “environmental illness,” “environmental sensitivity,” or “idiopathic environmental intolerance” (IEI), each refer to a variety of symptoms experienced by people after exposure to chemical, biologic, or physical substances.

In 1996 the World Health Organization proposed using the phrase “idiopathic environmental intolerance” (IEI) instead of MCS, because many people attribute symptoms to environmental agents other than chemicals, such as food or electromagnetic forces. MCS or IEI is fairly common in the United States.

MCS IntolerancesCigarette smoke, food colorings, alcohol, paint, pesticides, gasoline, plastics, car exhaust fumes, shampoos, caffeine, turpentine, new carpeting, bleach, chemical food additives,  household cleaners, fragrances, and newspaper ink are some of the most commonly reported triggers.  These common triggers  cause severe, debilitating reactions in a MCS/IEI patient whereas the average person might be mildly affected by these products or environmental conditions.  Statistical studies show that 16% of people in California and New Mexico report that their IEI or MCS symptoms severely limit their ability to function on a daily basis.  Some are unable to leave their homes because of the possibility of having a severe asthmatic reaction to someone wearing perfume in an elevator or at a movie theater, for example.  Some cannot live in an apartment complex because of the gas heat, or because of neighbors who smoke cigarettes. Some are never unable to open their windows because of car exhaust or the gas fumes from neighborhood lawn mowers.  Some cannot ever eat food prepared in public restaurants or packaged foods due to chemical food additives, resulting severe symptoms such as fainting or vomiting.  This can lead to isolation and depression. Many have multiple combinations of environmental sensitivities, dramatically limiting their abilities to function.


WHAT ARE THE SYMPTOMS?

The symptoms of  MCS/IEI vary from patient to patient but the most common symptoms are respiratory distress, dizziness, gastrointestinal problems, joint pain, fatigue and severe headache.

MCS What is It?
People who suffer with MCS/IEI often report having several of the following symptoms:

  1.     burning eyes
  2.     wheezing, breathlessness
  3.     extreme fatigue/lethargy
  4.     headache/migraine
  5.     nausea, upset stomach
  6.     vertigo/dizziness
  7.     fainting
  8.     seizures
  9.     memory problems
  10.     runny nose (rhinitis)
  11.     sore throat
  12.     chronic cough
  13.     sinusitis
  14.     inflammation
  15.     skin rashes and or itching skin
  16.     sensitivity to light & noise
  17.     sensitivity and pain with heat or cold
  18.     insomnia or sleeping disorders
  19.     diarrhea or constipation
  20.     bloating
  21.     sweating profusely or uncontrollable chills
  22.     food sensitivities and/or irritable bowel syndrome
  23.     muscle & joint pain
  24.     trouble concentrating, foggy-headed

young man allergiesWHO IS MOST LIKELY TO EXPERIENCE MCS/IEI?
MCS/IEI can affect people of all ages. There appears to be a link between fibromyalgia or chronic fatigue syndrome patients and MCS/IEI patients.  MCS/IEI patients and ME/CFS/CFIDS/PVFS (myalgic encephalomyelitis – chronic fatigue) patients have very similar symptoms.  Because the symptoms are so similar, it is not easy for doctors to make an accurate diagnosis. When surveying a general population of people with CFS, it was determined that 14% of MCS patients also had CFS and 41% of CFS patients met criteria for MCS diagnosis.

People with a history of allergies, sinusitis, or food intolerances or sensitivities are more likely to experience MCS/IEI.   Chronic Fatigue Syndrome (CFS) patients also report worsening of allergies when exposed to chemicals and environmental triggers.  This may be related to a CFS/MCS/IEI diagnosis.

Research studies show that Veterans of the Persian Gulf War and people diagnosed with Gulf War illnesses (GWI) report chemical sensitivities at a three-times higher rate than civilians or veterans who did not participate in the Gulf War, or non-deployed veterans. Those who were profoundly affected by hurricane Katrina and other natural disasters, also reported to have MCS/IEI symptoms.  There may be a connection between post-traumatic stress disorder and MCS/IEI.

WHAT IS THE CAUSE OF MCS/IEI?
Toxic factory SmokeThe cause of MCS/IEI is yet to be determined.  Some believe that it is the result of an incident which resulted in toxic exposure from one particular source, and developed into what is known as “spreading.”  “Spreading” is a phenomenon where the body becomes sensitive to other chemicals as a result of exposure to one chemical. This phenomenon is characteristic of  veterans who have MCS/IEI and also diagnosed with Gulf War illness, or others who have had a traumatic event in their lives.

It is also believed that the MCS/IEI reaction can be a result of long-term exposure to toxic chemicals, such as those who work factories or live in heavily polluted city environments. It is also a possibility that MCS/IEI is a psychological reaction  rather than a biochemical reaction although the symptoms can be quite debilitating, often resulting in the person living a completely isolated lifestyle. It is also possible that MCS/IEI is an autoimmune disorder. More research is needed to determine the cause.

Some researchers believe that MCS/IEI is a misdiagnosis for another disorder. More than half of 54 people from one MCS study were mistakenly diagnosed with MCS, and instead were determined to have a somatoform disorder or panic disorder. Migraine, anxiety disorder, lupus, postural orthostatic tachycardia syndrome or other forms of orthostatic intolerance, hay fever and other allergies, hypercalcemia, hypothyroidism, chronic fatigue syndrome, fibromyalgia, or mast cell activation diseases such as mastocytosis, or any disease or condition where symptoms can be triggered by environmental toxins, chemicals or inhalants, could be possible reasons for a MCS/IEI misdiagnosis.

MCS Diagnosis

DIAGNOSIS OF MCS/IEI
The definition of MCS /IEI was established by researchers and clinicians in 1999.   Specific symptoms are not listed in the criteria, however respiratory symptoms, gastrointestinal symptoms, fatigue, weakness,  and headaches are most common. The following six criteria must be present for a person to be diagnosed with MCS/IEI:

  1. The symptoms are reproducible with repeated exposure to the same chemical.
  2. The condition is chronic.
  3. Low levels of exposure (lower than previously or commonly tolerated) result in manifestations of the syndrome.
  4. The symptoms improve or resolve when the incitants (irritating agent such as a virus, bacterium, prion, gas, or fungus) are removed.
  5. Responses occur to multiple chemically unrelated substances.
  6. Symptoms involve multiple organ systems (most commonly the neurological, immune, respiratory, skin,    gastrointestinal and musculoskeletal).

Chemical Sensitive ShopperCONTROVERSY ABOUT MCS/IEI
The International Statistical Classification of Diseases and Related Health Problems (ICD), maintained by the World Health Organization, does not recognize MCS or environmental sensitivity as a valid diagnosis.  The American Medical Association (AMA) has stated that MCS is not recognized as an established organic disease. The American Academy of Allergy, Asthma, and Immunology, the California Medical Association, the American College of Physicians, and the International Society of Regulatory Toxicology and Pharmacology also do not recognize it as a medical diagnosis or disease.

However, In 1997, U.S. Social Security Administration Commissioner John Callahan issued a court memorandum officially recognizing MCS  “as a medically determinable impairment.”  The SSA agrees that some MCS patients are too disabled to be meaningfully employed.

IS MCS/IEI ACCEPTED UNDER THE AMERICANS WITH DISABILITIES ACT?
The ADA does not list particular disabilities accepted under the Americans with Disabilities Act, however, some people with MCS/EI will have a disability under the ADA and some will not, depending on the severity of their symptoms. If a person’s MCS/IEI is disabling, then the employer is required by law to make accommodations.  For more information about how to determine whether a person has a disability under the ADA, and suggestions as to how to work with your employer to modify your working environment, visit the Job Accommodations Network.

Man cleaning apartment
TREATMENT
AND LIFESTYLE CHANGES

Lifestyle changes are the primary treatment for most MCS/IEI sufferers. A 2003 survey of 917 MCS patients concluded that the two most effective treatments for MCS  were a chemical-free living space and chemical avoidance. Prayer and meditation  also were recommended choices. Of those who tried Zoloft, prescription medication, two-thirds of patients reported it as being harmful, along with other pharmaceutical drugs and chemical, unnatural solutions.

Nutritional or dietary changes, including vitamin or herbal supplements, can also be beneficial.  Many people with MCS/IEI with dietary restrictions might eliminate whole categories of foods (dairy, for example, or meat).   A trusted nutritionist or healthcare practitioner can work with the patient to review and plan a diet with optimal nutrition.

In addition to meditation, dietary and lifestyle changes, some patients suffering from MCS/IEI symptoms have found acupuncture, chiropractic treatment, or yoga to be effective methods for relieving respiratory,  anxiety, nausea, and pain symptoms and promoting relaxation.

However, the primary treatment remains to take action to modify the living environment and avoid MCS/IEI triggers.  The following modifications may be effective:

  1. Vacuum pillows, beds, chairs, etc. weekly, with a HEPA filter vacuum, change the filter regularly
  2. Wash sheets and blankets weekly in hot water (130°F [54°C]) and dry in a hot dryer.
  3. Cover mattresses and pillowcases with airtight allergen-proof covers.
  4. Replace comforters and pillows made from natural materials (such as down, feathers, or cotton) with those made from synthetic fibers.
  5. Avoid wall-to-wall carpeting (especially in the bedroom) as much as possible. If you have it, be sure to vacuum often.
  6. Throw out all products with chemical fragrances (perfumes, cleaning supplies, shampoo, etc.)
  7. Buy only natural, fragrance-free products
  8. Close all open gaps in windows, floorboards, doors, and around drains.
  9. Fix and seal leaky water faucets and pipes because roaches need water and humidity to survive.
  10. Always keep food in airtight containers.
  11. Remove pet food dishes after pets have eaten.
  12. Keep stove and kitchen surfaces free of food and dirt.
  13. Use an air-purifier with a HEPA filter
  14. Throw out all food products with food additive and chemicals
  15. Do not use processed oils
  16. Wash all fresh fruits and vegetables before eating
  17. Do not eat packaged foods.
  18. Remove any curtains, carpeting, or wallpaper that show visible evidence of mold.
  19. Install exhaust fans in the kitchen and bathroom.
  20. Use dehumidifiers in damp areas such as the basement, and hire others to clean this regularly
  21. Avoid storing clothing in damp areas.
  22. Do not carpet damp or concrete floors, use wooden floors or tile floors only, if possible
  23. Do not use gas stoves or gas heating, use electric
  24. Do not use synthetic, plastic or man-made fibers in clothing or blankets.
  25. Use a solution of 1 part bleach and 20 parts water to clean areas with mold.
  26. Do not frequent any locations that allow smoking.
  27. Avoid areas with fresh paint fumes.
  28. Avoid the fumes of strong cleaning products.
  29. Avoid perfumes and aerosols.
  30. Use masks if needing to go around airport terminals, bus stations or train stations, or hire others to help you.
  31. Hire others to help you with raking, mowing, blowing leaves, gardening and cleaning the garage, yard or home.
  32. Close windows and stay indoors (with air conditioning) when necessary, using air purifiers.
  33.  Have an air quality test performed by an industrial hygiene professional to assess poor air quality, dust, mold or mildew accumulation, VOC concentration, etc.
  34. Buy indoor exercise equipment to keep physically fit rather than participating in outdoor activities
  35. Make your home a pleasant enjoyable place where you can meet your needs and best care for yourself in comfort.

RESEARCH ARTICLES

Principles and Methods for Assessing Autoimmunity Associated With Exposure to Chemicals: Environmental Health Criteria 236 – ehc236.pdf. World Health Organization (WHO)

Watanabe M, Tonori H and Aizawa Y,  “Multiple chemical sensitivities and idiopathic environmental intolerance” (part one), Department of Preventive Medicine and Public Health, Kitasato University School of Medicine, 1-15-1 Kitasato, 228-8555 Sagamihara, Kanagawa, Japan,   Environ Health Prev Med, v.7(6); Jan 2003, PMC2723465

Watanabe M, Tonori H and Aizawa Y,  “Multiple chemical sensitivities and idiopathic environmental intolerance” (part two), Department of Preventive Medicine and Public Health, Kitasato University School of Medicine, 1-15-1 Kitasato, 228-8555 Sagamihara, Kanagawa, Japan,   Environ Health Prev Med, v.7(6); Jan 2003, PMC2723466

Meggs WJ, Dunn KA, Bloch RM, et al. Prevalence and nature of allergy and chemical sensitivity in a general population. Arch Environ Health 1996; 51:275.

Kreutzer R, Neutra RR, Lashuay N. Prevalence of people reporting sensitivities to chemicals in a population-based survey. Am J Epidemiol. 1999;150:1-12.

Multiple chemical sensitivity: a 1999 consensus. Arch Environ Health. 1999;54:147-9.

Fukuda K, Nisenbaum R, Stewart G, et al. Chronic multisymptom illness affecting Air Force veterans of the Gulf War. JAMA. 1998;280:981-8.

Jason LA, Taylor RR, Kennedy CL. Chronic fatigue syndrome, fibromyalgia and multiple chemical sensitivities in a community-based sample of persons with chronic fatigue syndrome-like symptoms. Psychosom Med. 2000;62:655-63.

Bailer J, Witthöft M, Rist F. Psychological predictors of short- and medium term outcome in individuals with idiopathic environmental intolerance (IEI) and individuals with somatoform disorders. J Toxicol Environ Health A 2008; 71:766.

Sparks PJ, Daniell W, Black DW, et al. Multiple chemical sensitivity syndrome: a clinical perspective. I. Case definition, theories of pathogenesis, and research needs. J Occup Med 1994; 36:718.

Levin AS, Byers VS. Environmental illness: a disorder of immune regulation. Occup Med 1987; 2:669.

Black, DW., Temple S, Overview of idiopathic environmental intolerance (multiple chemical sensitivity)” 


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Jean E. DartThis article is written by Jean Voice Dart, M.S. Special Education from Illinois State University. Jean is a published author and has written hundreds of health articles as well as hosting a local television program, “Making Miracles Happen.” She is a Registered Music Therapist, Sound Therapist, and Master Level Energetic Teacher, and is the Executive Director, founder and Health and Wellness Educator of the Monterey Bay Holistic Alliance. The Monterey Bay Holistic Alliance is a registered 501 (c) 3 nonprofit health and wellness education organization. For more information about the Monterey Bay Holistic Alliance contact us or visit our website at www.montereybayholistic.com.


Disclaimer:The Monterey Bay Holistic Alliance is a charitable, independent registered nonprofit 501(c)3 organization and does not endorse any particular products or practices. We exist as an educational organization dedicated to providing free access to health education resources, products and services. Claims and statements herein are for informational purposes only and have not been evaluated by the Food and Drug Administration. The statements about organizations, practitioners, methods of treatment, and products listed on this website are not meant to diagnose, treat, cure, or prevent any disease. This information is intended for educational purposes only. The MBHA strongly recommends that you seek out your trusted medical doctor or practitioner for diagnosis and treatment of any existing health condition.

 

What is Chronic Fatigue Syndrome? How is it Treated?

Man stressedDEFINITION OF CHRONIC FATIGUE SYNDROME
Chronic Fatigue Syndrome (CFS) is a complicated disorder characterized by extreme fatigue that is not explained through diagnostic testing or a pre-existing medical condition. 

CFS is also known as Myalgic Encephalomyelitis (ME), chronic fatigue and immune dysfunction syndrome (CFIDS) and by other names. It can be a complex and debilitating chronic illness with a serious impact on one’s quality of life. Fatigue specific to CFS may worsen with physical or mental activity, but doesn’t improve after sleeping or resting.

Chronic Fatigue
WHAT ARE THE SYMPTOMS OF CFS?
The most common symptoms of Chronic Fatigue Syndrome or Myalgic Encephalomyelitis include post-exertional malaise (PEM).  PEM is characterized by a state of exhaustion due to sleep that is not relieved by bedrest or sleep.  This unrefreshing sleep leads to trouble concentrating or mental fatigue, joint and muscle pain, with worsening symptoms typically lasting for six months or more.

Primary symptoms include:

  1. Increased malaise (extreme exhaustion and sickness) following physical activity or mental exertion
  2. Problems with sleepChronic Fatigue
  3. Difficulties with memory and concentration
  4. Persistent muscle pain
  5. Joint pain (without redness or swelling)
  6. Headache
  7. Tender lymph nodes in the neck or armpit
  8. Sore throat

Other secondary symptoms may include:

  1. Brain fog or trouble concentrating
  2. Difficulty maintaining an upright position
  3. Dizziness, balance problems or fainting
  4. Allergies or sensitivities to foods, odors, chemicals, medications, or noise
  5. Irritable bowel syndrome
  6. Low grade fever or low body temperature
  7. Numbness, tingling, or burning sensations in the face, hands, or feet
  8. Chills and night sweats
  9. Visual disturbances (sensitivity to light, blurring, eye pain)
  10. Depression or mood problems (irritability, mood swings, anxiety, panic attacks)

Chronic Fatigue SyndromeA person with CFS feels completely exhausted to the point of being unable to function. This extreme tiredness makes it hard to do the daily tasks that most of us do without thinking — like dressing, bathing, holding a book, putting away dishes, or eating, and therefore might experience depression. Sleep or rest does not make the tiredness go away. It can be made worse by walking,  light exercising, carrying on a conversation or even thinking or problem-solving.

Chronic Fatigue Syndrome can happen gradually and worsen over time, or it may occur unexpectedly and suddenly.  The extreme tiredness may come and go, over many years.  In some cases the CFS symptoms never goes away. CFS symptoms must remain for at least six months before a diagnosis can be made by a trusted physician.

 

HOW COMMON IS CFS AND WHAT CAUSES IT?
Experts estimate that at least one million Americans have CFS, and of these cases, 20% are undiagnosed. Statistics show that in the United States, approximately 75-420 people have CFS per 100,000 people.  In Australia,  o.3% or 30 per 1,000 people have CFS.

Women are four times as likely as men to develop Chronic Fatigue Syndrome and people age 40 – 59 are more likely to be diagnosed, than children. People of all ages can get CFS, although studies suggest that CFS occurs more often in adolescents than in children under twelve years of age.

CFS occurs in all ethnic groups, cultures, and countries around the world. Statistics show that it is more Tired womancommon in lower-income than in higher-income persons, however this is not significant. CFS is sometimes seen in members of the same family. Researchers are determining whether this might be because of a genetic link.  People who are overweight and inactive are more likely to develop CFS.

There is no definite cause of CFS.  Epstein-Barr virus or human herpes virus-6 (HHV-6) might be a contributing factor, however, no specific virus has been identified as the cause.  It is thought that it might be caused by inflammation in the nervous system and a faulty immune system response.

Age, previous illnesses, stress, genetics, and environmental factors listed above, may also play a significant role in the development of Chronic Fatigue Syndrome.   People with Chronic Fatigue Syndrome often report that the onset of symptoms occurred after a time of great stress, such as the loss of a loved one or major surgery. More research is needed to determine the cause.

Chronic Fatigue SymptomsHOW DOES THE DOCTOR DIAGNOSE CFS?
A diagnosis of CFS may take many years to determine and can be frustrating or wearing for those suffering from CFS.  Laboratory tests currently are not used.  Sometimes CFS can be misdiagnosed because many Chronic Fatigue Syndrome symptoms can be side effects of medical treatments or can also be symptoms of other illnesses.  Therefore, doctors will prescribe blood and urine tests, and possibly brain MRIs to rule out other illnesses and medical conditions.  All adult cases of CFS are determined by the “Fukuda criteria” from the 1994 Centers for Disease Control and Prevention (CDC) definition.  Children with CFS are determined by a pediatric case definition of CFS.  A qualified doctor will make a diagnosis of CFS after questioning a patient about their physical and mental health, conducting a physical exam, and ordering urine and blood tests to rule-out other medical conditions.  The doctor will diagnose a patient as having CFS, only if that person has been extremely tired for six months or more and laboratory test results do not offer a medical solution, and if the patient has four out of the 8 primary symptoms of CFS listed above.

In addition to having four out of the eight primary symptoms determined by the Centers for Disease Control and Prevention (listed above under “Primary symptoms”), the patient must  also have unexplained, persistent or relapsing chronic fatigue that is:

  1. New or definite onset (has not been lifelong)
  2. Not the result of ongoing exertion
  3. Not substantially alleviated by rest
  4. Results in substantial reduction in previous levels of occupational, educational, social, or personal activities.

 

DISEASES WHICH HAVE SIMILAR SYMPTOMS TO CFS
Doctors must rule out other diseases and chronic illnesses that have similar symptoms. The following diseases and syndromes are often mistaken for Chronic Fatigue Syndrome:

  1. Drug dependence
  2. Infections
  3. Muscle or nerve diseases (such as multiple sclerosis)
  4. Endocrine diseases (such as hypothyroidism)
  5. Psychiatric or psychological illnesses, particularly depression
  6. Tumors
  7. Fibromyalgia
  8. Lyme disease
  9. Gulf War syndrome
  10. Gluten intolerance
  11. Post-polio syndrome
  12. Vitamin B12 deficiency
  13. Multiple chemical sensitivities
  14. Other immune or autoimmune disorders
  15. Heart, kidney or liver diseases

 

TREATMENT OF CHRONIC FATIGUE SYNDROME
The National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) are funding CFS research studies on Chronic Fatigue Syndrome in order to determine treatments and cures.  The following treatments have been found to be effective

Over-the-counter pain relievers
such as
Aleve, Advil, or Motrin, can be beneficial in reducing pain, such as body aches, headaches, and muscle and joint pain. Non-drowsy antihistamines can help with allergy symptoms, such as sneezing, runny nose, sore throat, nose and watering or itching eyes.  Prescription medications like doxepin or amitriptyline can help improve sleep.

Yoga poseComplementary or alternative treatments, such as massage, acupuncture, chiropractic care, yoga, stretching, meditation, Tai Chi, Reiki,  biofeedback, or self-hypnosis can be helpful in treating stress-related symptoms or pain. Many alternative treatments, dietary supplements, and herbal remedies can be effective in alleviating CFS symptoms.  Neti Pots are a nonprescription solution for chronic allergy and sinusitis problems and recommended for use by most all healthcare practitioners. Herbal remedies such as honey and lemon tea, steam tent, valerian root, grapefruit seed extract, ginger, echinacea,  vitamin C supplements, and others. Talk to your doctor, nutritionist, or trusted health-care practitioner in order to determine which treatment is best for you.

Lifestyle changes can be effective in treating CFS.  A nutritionist or primary care doctor can make suggestions regarding a healthy diet.  A journal can be a helpful tool. Write down what you do each day, noting times when you feel particularly tired. Then, determine which activities are most fatiguing to you.  Stop doing things that seem to trigger your tiredness, or do less.  If basic tasks are overwhelming, such as dressing or eating, find ways to modify these tasks or break them into smaller steps.  occupational therapistAn occupational therapist or physical therapist can be helpful in recommending assistive devices (such as modified appliances or tools) if you are unable to achieve basic daily life skills.  The occupational therapist can help you with setting goals, and choosing alternative approaches to completing tasks at home and at work and making progress in managing your pain and fatigue. You might also need to change your working or resting environment and even move to another location that is more supportive and comfortable for you. CFS affects mental, emotional, or physical energy, so these modifications in behaviors must include all areas of fatigue.

ORGANIZATIONS

  1. Chronic Fatigue and Immune Dysfunction Syndrome Association of America, Phone: 704-365-2343 http://solvecfs.org/
  2. Chronic Fatigue Syndrome, Center for Disease Control, Chronic Fatigue Syndrome Advisory Committee, HHS, Phone: 202-690-7650 http://www.cdc.gov/cfs/
  3. International Association for CFS/ME Phone: 847-258-7248 http://www.iacfsme.org/
  4. National CFIDS Foundation, Phone: 781-449-3535 http://www.ncf-net.org/
  5. National Chronic Fatigue Syndrome and Fibromyalgia Association, Phone: 816-737-1343
  6. The Trans-NIH Working Group on Chronic Fatigue Syndrome, Phone: 301-402-1770


REFERENCES

  1. Evangard B, Schacterie R.S., Komaroff A. L. (Nov 1999). “Chronic fatigue syndrome: new insights and old ignorance”. Journal of Internal Medicine 246 (5): 455–469.
  2. Santhouse A, Hotopf M, David AS. Chronic fatigue syndrome. BMJ. 2010;340:c738
  3. Guideline 53: Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy). London: National Institute for Health and Clinical Excellence. 2007.
  4. Afari N, Buchwald D (2003). “Chronic fatigue syndrome: a review”. Am J Psychiatr 160 (2): 221–36
  5. “Chronic Fatigue Syndrome (CFS), Symptoms”. Centers for Disease Control and Prevention. 2012-05-14. Retrieved 2012-09-23
  6. “Chronic Fatigue Syndrome Basic Facts”. Centers for Disease Control and Prevention. May 9, 2006. Retrieved 2008-02-07
  7. Carruthers BM, Jain AK, De Meirleir KL, Peterson DL, Klimas NG, et al. (2003). “Myalgic encephalomyalitis/chronic fatigue syndrome: Clinical working definition, diagnostic and treatment protocols” (PDF). Journal of Chronic Fatigue Syndrome 11 (1): 7–97
  8. Edmonds M, McGuire H, Price J (2004). “Exercise therapy for chronic fatigue syndrome”. In Price, Jonathan R. Cochrane Database Syst Rev (3): CD003200.



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Jean E. DartThis article is written by Jean Voice Dart, M.S. Special Education from Illinois State University. Jean is a published author and has written hundreds of health articles as well as hosting a local television program, “Making Miracles Happen.” She is a Registered Music Therapist, Sound Therapist, and Master Level Energetic Teacher, and is the Executive Director, founder and Health and Wellness Educator of the Monterey Bay Holistic Alliance. The Monterey Bay Holistic Alliance is a registered 501 (c) 3 nonprofit health and wellness education organization. For more information about the Monterey Bay Holistic Alliance contact us or visit our website at www.montereybayholistic.com.
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