Huntington's chorea
Related Terms
Adrenal gland, akinesia, akinetic-rigid, anxiety, apathetic, atherosclerosis, autoimmune disease, bipolar, bradykinesia, CHF, chorea, chorea maior, cognition, cognitive, computerized tomography, congestive heart failure, cortisol, CT, depression, esophagus, excitotoxicity, genetic, HD, heart attack, Huntington's chorea, hypersexuality, hypertension, juvenile HD, juvenile Huntington's disease, magnetic resonance imaging, metabolism, monoamine, MRI, mutation, nervous system, neurobehavioral, neurochemical, neurodegenerative, neurological, neurons, neuropsychiatric, oxidative stress, pneumonia, prenatal, psychiatric, psychopathology, receptors, rigidity, schizophrenia, senile chorea, SLE, striatum, suicide, Sydenham's chorea, systemic lupus erythematosus, tardive dyskinesia, trachea, trophic factors, Westphal variant, Wilson's disease.
Background
Huntington's disease (HD) is a neurological (nervous system) condition resulting from genetically programmed degeneration of neurons (brain cells) in certain areas of the brain. HD, previously known as Huntington's chorea and chorea maior, affects up to eight individuals per 100,000. It affects one out of 20,000 people of Western European descent and one out of one million people of Asian and African descent.
HD causes uncontrolled movements, loss of intellectual faculties, and emotional disturbance. HD is a familial disease, passed from parent to child through a mutation in the normal gene. HD causes cells in certain areas of the brain to slowly destruct. It usually starts in middle adulthood. HD gradually gets worse over time. In one to three percent of individuals with HD, no family history of HD can be found.
Affected people may be unable to take care of themselves and may need to be put in an institution. Death occurs in most affected people between 10 and 30 years after the disease is diagnosed. HD is not contagious. Death is due to infection (usually pneumonia), fall-related injuries, or suicide. The suicide rate for HD sufferers is much greater than the national average.
Some early symptoms of HD are mood swings, depression, irritability, trouble driving, and trouble learning new things, remembering a fact, or making a decision. When the condition progresses, difficulty in concentrating on intellectual tasks may occur, and the patient may have difficulty eating and swallowing. The rate of disease progression (worsening of the disease) and the age of onset vary from person to person.
There is no cure and there are no treatments that slow the progression of HD. Medication may be used to treat psychosis, depression, or movement.
Brain cells in HD patients slowly die, so scientists are paying close attention to the process of genetically programmed cell death that occurs deep within the brains of individuals with HD.
Juvenile HD has an age of onset anywhere between infancy and 20 years of age. The symptoms of juvenile HD are different from those of adult-onset HD in that they generally progress faster and are more likely to exhibit rigidity and bradykinesia (very slow movement) instead of chorea (involuntary movements).
Risk factors and causes
Huntington's disease (HD) is an inherited condition caused by a single abnormal gene. It is found in every country in the world. Each child of an HD parent has a 50% chance of inheriting the HD gene. Because signs and symptoms typically appear in middle age, some parents may not know they carry the gene until they've already had children and possibly passed on the trait. If a child does not inherit the HD gene, he or she will not develop the disease and cannot pass it to subsequent generations.
A person who inherits the HD gene will eventually develop the disease. Whether one child inherits the gene has no bearing on whether other siblings will or will not inherit the gene. A genetic test, coupled with a complete medical history and neurological and laboratory tests, helps physicians diagnose HD. Testing before symptoms occur is available for individuals who are at risk for carrying the HD gene.
Although the precise cause of cell death in HD is not yet known, scientists are paying close attention to the process of genetically programmed cell death that occurs deep within the brains of individuals with HD. This process involves a complex series of interlinked events leading to cellular suicide. Causes of cellular death in HD patients may include excitotoxicity (overstimulation of cells by natural chemicals found in the brain), defective energy metabolism (a defect in the cell's mitochondria where energy is produced), oxidative stress (normal metabolic activity in the brain that produces toxic compounds called free radicals that cause oxidation and death of cells), and trophic factors (natural chemical substances found in the human body that may protect against cell death).
Clinical studies for HD are focusing on understanding losses of nerve cells and receptors in HD. Neurons (nerve cells) in the striatum (a section deep within the brain) are classified both by their size (large, medium, or small) and appearance (spiny or a-spiny). Each type of neuron contains various combinations of neurotransmitters (brain chemicals). Researchers have found that the destructive process of HD affects different subsets of neurons to varying degrees. The hallmark of HD is selective degeneration of medium-sized spiny neurons in the striatum. Studies also suggest that losses of certain types of neurons and receptors are responsible for different symptoms and stages of HD.
In spiny neurons, two types of changes have been observed, each affecting the nerve cells' dendrites. Dendrites, found on every nerve cell, extend out from the cell body and are responsible for receiving messages from other nerve cells. In the intermediate stages of HD, dendrites grow out of control. New, incomplete branches form and other branches become contorted. In advanced severe stages of HD, degenerative changes cause sections of dendrites to swell, break off, or disappear altogether. Investigators believe that these alterations may be an attempt by the cell to rebuild nerve cell contacts lost early in the disease. As the new dendrites establish connections, however, they may in fact contribute to nerve cell death.
Signs and symptoms
Although there is no sudden loss of abilities or exhibition of symptoms, there is a progressive decline. Symptoms are classified as physical, cognitive (the process of knowing and thinking), and psychological (mental illnesses). Physical signs are usually the first noticed, but it is unknown how long before the cognitive signs and psychopathology are affected. Physical symptoms are almost always visible and cognitive symptoms are exhibited differently from person to person.
Psychopathological symptoms vary more than cognitive and physical symptoms, and may include anxiety, depression, a reduced display of emotions called blunting, egocentrism, aggressive behavior, hypersexuality (increased desire for sex), and compulsivity, which can cause addictions such as alcoholism, drug addiction, and gambling.
Many patients are unable to recognize expressions in others and also do not show reactions of disgust to foul odors or tastes. The inability to recognize disgust in others appears in carriers of the Huntington gene before symptoms are manifest.
The rate of disease progression and the age at onset vary from person to person. Symptoms of Huntington's disease (HD) usually become noticeable in the mid 30s to mid 40s. Adult-onset HD is characterized by disabling, uncontrolled movements (chorea).
Some individuals with adult-onset HD may not have chorea. They may appear rigid and move very little, or not at all, a condition called akinesia.
The earlier the onset, the faster the disease seems to progress. In general, the duration of the illness ranges from 10-30 years. The most common causes of death are infection (most often pneumonia), injuries related to a fall, and suicide.
Early signs and symptoms: Early signs of the disease vary greatly with each individual. Normally, the earlier the symptoms appear, the faster the disease progresses. Family members may first notice that the individual experiences mood swings or becomes irritable, apathetic (a lack of interest or concern), depressed, or angry. These symptoms may lessen as the disease progresses or, in some individuals, may continue and include hostile outbursts or deep bouts of depression. HD may affect the individual's judgment, memory, and other cognitive functions.
Some early signs include having trouble driving, learning new things, remembering a fact, answering a question, or making a decision. Some may even display changes in handwriting. As the disease progresses, concentration on intellectual tasks becomes increasingly difficult. In some individuals, the disease may begin with uncontrolled movements in the fingers, feet, face, or trunk. These movements, which are signs of chorea (involuntary movements), often intensify when the individual is anxious. HD can also begin with mild clumsiness or problems with balance.
Late signs and symptoms: Some individuals develop involuntary movements later, after the disease has progressed. They may stumble or appear uncoordinated. Chorea often creates serious problems with walking, increasing the likelihood of falls. The disease can reach the point where speech is slurred and vital functions, such as swallowing, eating, speaking, and especially walking, continue to decline. Some individuals cannot recognize other family members. Many, however, remain aware of their environment and are able to express emotions.
Juvenile HD has an age of onset anywhere between infancy and 20 years of age. The symptoms of juvenile HD are different from those of adult-onset HD in that they generally progress faster and are more likely to exhibit rigidity and bradykinesia (very slow movement) instead of chorea. A common sign of HD in a younger individual is a rapid decline in school performance. Symptoms can also include subtle changes in handwriting and slight problems with movement such as slowness, rigidity, tremor, and rapid muscular twitching called myoclonus. Several of these symptoms are similar to those seen in Parkinson's disease, and they differ from the chorea seen in individuals who develop the disease as adults. These young individuals are said to have akinetic-rigid HD or the Westphal variant of HD. People with juvenile HD may also have seizures and mental disabilities.
Diagnosis
The requirements for the diagnosis of Huntington's disease (HD) include medical history, family history, neurological examination, brain imaging testing (including magnetic resonance imaging or MRI and computerized tomography or CT), laboratory tests, and genetic testing (when necessary).
Genetic testing - direct mutation analysis:
HD is usually inherited as an autosomal dominant trait, meaning that each child of an affected parent has a 50% risk of inheriting the mutated gene for the disease. Those who do not inherit a copy of the disease gene (or have a spontaneous mutation in that gene) do not develop HD and cannot pass the disease trait on to future generations.
Scientists discovered the gene for HD in 1993, called the IT15 gene. This discovery helped in the development of specialized testing that may help to confirm the diagnosis of HD in patients with an affected parent with the disease. During such testing, blood samples are taken from patients and DNA is directly analyzed for HD mutations.
Implications of genetic testing: Although the discovery of the HD gene has facilitated predictive testing, the disease remains without a cure, and treatment to slow or alter the disease's progression is currently unavailable. Therefore, the availability of such testing continues to be associated with numerous emotional, practical, and ethical concerns. Even confirmed positive results do not provide accurate information concerning the approximate age at onset, clinical severity, or rate of disease progression. Individuals at risk for HD who are interested in the possibility of genetic testing are referred to specialized, designated testing centers that have staff with the necessary expertise and appropriate psychosocial counseling experience.
Genetic counseling is the process by which patients or relatives, at risk of an inherited disorder such as HD, are advised of the consequences and nature of the disorder, the probability of developing or transmitting it, and the options open to them in management and family planning in order to prevent or stop passing the gene on. A genetic counselor is a healthcare provider who helps in this process. At risk individuals include those with a parent or sibling who has HD or individuals known to carry an HD gene mutation. Individuals considering genetic testing require sufficient information and appropriate counseling concerning the limitations of genetic testing, their potential level of risk, and the possible implications of results including negative, positive, or inconclusive findings.
Genetic counseling concerning the implications of positive or questionable results should address a number of essential areas, including long-term emotional and lifestyle issues, confidentiality concerns (including the fact that patient confidentiality laws are governed by individual states), and possible effects in the areas of health insurance, life insurance, and employment. Counseling regarding the practical, emotional, and personal impact on spouses as well as relatives who themselves may be at risk including children, parents, or other relatives is important as well as family planning. Individuals who are considering such testing may wish to have a relative or close friend accompany them to their counseling sessions. A decision to receive genetic testing must be carefully considered and made solely by the individual.
Predictive testing in children: It is generally believed that pre-symptomatic testing should not be conducted in at-risk children who are under the age of 18 years. Once individuals are aged 18 or older, they have the choice to receive testing based on a personal, informed decision. An exception may be made for children with symptoms characteristic of HD. In such cases, genetic testing is provided in association with a thorough clinical evaluation.
Prenatal testing: Predictive genetic testing before birth (prenatal testing) is associated with unique concerns. For example, direct mutational analysis that provides a positive result indicates that a parent also carries the mutation. However, in some cases, parents may wish to determine the risk of disease development in the developing fetus, yet may not wish to know their own risk. Proper counseling in these individuals is necessary.
Physical and neurological assessment: Although predictive genetic tests may indicate whether individuals carry the disease gene, these tests are not able to confirm the onset of the disorder. Therefore, the diagnosis of HD is also based on a thorough clinical evaluation including a complete physical and neurological assessment and detection of characteristic symptoms and findings (such as involuntary movements, emotional and behavioral disturbances, and progressive dementia). A careful patient and family history will also be taken. Neurological assessment may include testing to evaluate cognitive (brain thinking and memory) status, reflexes, balance, and movement, including evaluation of certain voluntary eye movements necessary in focusing on moving targets.
Imaging techniques: Specialized brain imaging studies may also provide evidence that supports a diagnosis of HD. For example, in moderately advanced cases, computerized tomography (CT) scanning demonstrates characteristic changes in the brain. CT scanning may also detect characteristic enlargement of cavities of the brain (ventricles). In addition, positron emission tomography (PET) scanning may show decreased glucose and oxygen metabolism within the brain. Although such findings may also be associated with other neurodegenerative disorders, they may be helpful in supporting a suspected diagnosis of HD when associated with characteristic clinical findings and family history. In general, neuroimaging is performed only if a symptomatic individual does not have the HD gene and there is a suspicion of another neurodegenerative disorder.
If a symptomatic individual is gene negative, diagnostic studies may be conducted to eliminate other neurodegenerative disorders that have similar symptoms including Wilson's disease (excessive copper in the body), drug-induced tardive dyskinesia (involuntary movements of the tongue, lips, face, trunk, and extremities), Sydenham's chorea (infectious disease caused by bacteria that involves involuntary movements), systemic lupus erythematosus (SLE, an autoimmune disease), or senile chorea (a symptom complex primarily characterized by the development of chorea after age 60). Such studies may include blood tests, neurophysiologic tests, and neuroimaging techniques.
Complications
Huntington's disease (HD) is not fatal in itself. People with HD have a shorter life expectancy and die of life-threatening complications related to the disease. Pneumonia (a bacterial infection in the lungs and respiratory system) and heart disease (including heart attack, congestive heart failure or CHF, and atherosclerosis or hardening of the arteries) are the two leading causes of death for people with HD. Additionally, HD patients have higher incidence of choking and respiratory complications, gastrointestinal diseases (such as cancer of the pancreas), and suicide than the non-HD population.
One of the chief symptoms of HD is the inability to produce coordinated movements. In the latter stages of the disease, lack of muscle coordination becomes more pronounced to the point that people have difficulty swallowing. Swallowing is actually a complex series of movements by muscles in the throat to ensure passage of food into the esophagus (gastrointestinal tract) rather than the trachea (respiratory tract). As a result of these movements, the epiglottis, a flap that acts as a valve in the throat, prevents food from entering the airway. People with HD often lack this coordination, and food will accidentally enter the respiratory tract, leading to choking. Moreover, when food particles manage to get into the trachea (the "wind pipe" leading to the lungs), instead of the esophagus (the "food pipe" leading to the stomach), the lungs can become infected and cause what is known as aspiration pneumonia.
Although pneumonia is relatively common among people in the general population, it is only fatal in about five percent of HD cases. Researchers have demonstrated that stress imposed on a person for prolonged periods of time can severely damage the body's ability to fight off diseases. Long-term release of the stress hormone cortisol, released from the adrenal glands, can eventually suppress the immune system and cause other problems including hypertension (high blood pressure), impaired glucose tolerance (lack of blood sugar control), and weight gain. The physical, cognitive (thinking and memory), and psychiatric symptoms of HD add a great deal of stress to everyday life for these patients.
In addition, although studies have shown that suicide is not a leading cause of death for HD patients, suicide rates are higher than among the rest of the population. This is probably due to a combination of factors, including neuropsychiatric changes induced by HD and the added stress of daily life. Neuropsychiatric changes include mood disturbances (such as depression and anxiety), bipolar disorder (manic depressive illness), psychosis, and addiction.
Treatment
There is no treatment to fully stop the progression of the disease, but symptoms can be reduced or alleviated through the use of medication and care methods.
Medications: The use of medications may help to manage or alleviate certain neurobehavioral or movement changes associated with Huntington's disease (HD). Certain antipsychotic agents, such as haloperidol (Haldol?), or benzodiazepines, such as clonazepam (Klonopin?), may partially suppress involuntary movements and help to control psychiatric (mental) abnormalities, including severe agitation, hallucinations, or psychotic delusions. Because antipsychotic therapy may have potentially severe adverse effects, including the development of tardive dyskinesia (neurological condition that involves involuntary movements of the tongue, lips, face, trunk, and extremities), such medications should only be used to treat chorea if the condition is functionally disabling. In addition, these agents should be prescribed at the lowest possible dosages and periodically discontinued if possible (drug holidays). Benzodiazepines may also be associated with certain side effects, including fatigue (extreme tiredness) and drug dependency.
Monoamine-depleting agents (monoamines are brain chemicals), such as reserpine (Serpasil?), may alleviate chorea (involuntary movements) with a decreased risk of causing tardive dyskinesia. However, these agents may aggravate or cause drowsiness, depression, and fine motor tremors or have other serious, life-threatening adverse effects, including neuroleptic malignant syndrome (a neurological disorder that includes high fever, sweating, unstable blood pressure, stupor, muscular rigidity, and autonomic dysfunction which includes blood pressure and breathing) and agranulocytosis (failure of the bone marrow to make white blood cells for the immune system).
Medical management may also include administration of certain drugs to help alleviate depression, anxiety, or obsessive-compulsive behaviors potentially associated with HD. These drugs may include antidepressants such as paroxetine (Paxil?), fluoxetine (Prozac?, Sarafem?), and sertraline (Zoloft?).
Lithium (Lithobid? or Eskalith?) or valproic acid (Depakote?, Depakene?) may be prescribed to combat excitation and severe mood swings, similar to bipolar disorder. Medications may also be needed to treat the severe obsessive-compulsive rituals of some individuals with HD.
It is important to note that the side effects associated with certain medications may be difficult to differentiate from signs of HD. Most drugs used to treat the symptoms of HD have side effects such as fatigue, restlessness, or hyperexcitability. Any medication regimen needs to be assessed on a regular basis to determine the benefits and possible adverse effects of specific therapies and evaluate the need for continued treatment.
Late in the course of the disease, some patients with HD develop signs of parkinsonism, such as fine motor tremors. These symptoms typically are not responsive to antiparkinsonism medications, such as levodopa (L-dopa), a precursor of dopamine (a brain chemical), or agents that mimic the effects of dopamine (amantadine or Symmetrel?). In most patients, these agents may worsen involuntary movements. However, there have been a few reports in which patients with parkinsonism associated with late-onset HD have responded to levodopa. In addition, the treatment of juvenile HD may include prescribing such antiparkinsonian agents.
Investigational treatments: Experimental studies for the treatment of HD include transplantation of human (stem cells) or pig fetal cells. Stem cell research is investigational and the side effects are not known. Also, researchers are evaluating whether excessive activation of glutamate (a brain chemical) may be reduced by blocking receptors of N-methyl-D-aspartate (NMDA), a similar neurotransmitter, which may help to halt abnormal nerve cell death. The drug under investigation is riluzole (Rilutek?), which blocks activation of glutamate.
Another investigational drug for the symptomatic treatment of HD is ethyl-EPA (Miraxion?). Miraxion? is eicosapentaenoic acid (EPA), a component of omega-3 fatty acids or fish oils. Miraxion? seems to help decrease the chorea (involuntary movements) that can be debilitating in individuals with HD.
Nutrition and lifestyle changes: Proper diet and exercise is very important for individuals with HD. As the disease progresses, persons with HD may even choke. In helping individuals to eat, caregivers should allow plenty of time for meals. Food can be cut into small pieces, softened, or pureed to ease swallowing and prevent choking. While some foods may require the addition of thickeners, other foods may need to be thinned. Dairy products, in particular, tend to increase the secretion of mucus, which in turn increases the risk of choking. It is best to avoid dairy products such as milk, cheese, and sour cream.
Some individuals may benefit from swallowing therapy, which is especially helpful if started before serious problems arise. Suction cups for plates, special tableware designed for people with disabilities, and plastic cups with tops can help prevent spilling. The individual's doctor can offer additional advice about diet and about how to handle swallowing difficulties or gastrointestinal problems that might arise, such as incontinence or constipation.
Most HD sufferers need two to three times the calories than the average person to maintain body weight. The normal population's average daily intake is approximately 2,000 calories for women and 2,500 for children and men. Caregivers should pay attention to proper nutrition so that the individual with HD takes in enough calories to maintain his or her body weight. Individuals with HD are at special risk for dehydration and therefore require large quantities of fluids, especially during hot weather. Bendable straws can make drinking easier for the person. In some cases, water may have to be thickened with commercial additives to give it the consistency of syrup or honey due to swallowing problems.
Exercise is extremely important for the person with HD to maintain physical fitness as much as possible. Individuals with HD who exercise and keep active tend to do better, with fewer symptoms and a slower disease progression than those who do not. A daily regimen of exercise can help the person feel better physically and mentally. Patients should walk as much as possible, even if assistance is necessary.
Although their coordination may be poor, individuals should continue walking, with assistance if necessary. Those who want to walk independently should be allowed to do so as long as possible. Careful attention should be given to keeping their environment free of hard, sharp objects to help ensure maximal independence while minimizing the risk of injury from a fall. Individuals can also wear special padding during walks to help protect against injury from falls. Some individuals have found that small weights around the ankles can help stability. Wearing sturdy shoes that fit well can help too, especially shoes without laces that can be slipped on or off easily.
Speech therapy:
HD can impair speech, affecting the ability of the individual to express complex thoughts. Speech therapy may improve the individual's ability to communicate and swallowing methods. It is important for caregivers to understand that individuals with HD may not be communicating due to the disease and not due to lack of sociability.
Social activity: Unless and until the disease's progression prohibits it, people with HD should participate in outside activities, socialize, and pursue hobbies and interests. These activities also give family members and caregivers valuable time for themselves.
Caregiver support:
Huntington's disease confronts individuals and their caregivers with many complex problems that must be dealt with for the life of the patient. While it may be emotionally difficult, it is important for patients and caregivers to make informed, carefully considered decisions regarding the future while the patient is capable of making his or her contribution to a planned course of action. Patients and their family members should discuss and consider issues such as legal concerns, home care, assisted care, and institutionalization. Wills should be drawn up and legalized and other important documents should be taken care of as early as possible to avoid legal problems later on, when the patient may be unable to represent his or her own interests. Legal assistance may be necessary
Part-time help with housekeeping and physical care is often necessary. Federal, state, and local government programs and private agencies provide varying levels of domestic assistance, nutritional and nursing care, occupational therapy, and other home-based services. In some communities, group housing facilities are available to persons who are alone and still independent, though not fully capable of providing for all routine needs, such as cooking and housekeeping. In these group residences, a resident attendant takes care of meals, housekeeping services, social activities, and local transportation needs.
The decision to institutionalize or place a family member in a congregate care facility can be enormously difficult. Professional counseling may be needed to help families deal with this important life choice.
Physical therapy: According to the American Physical Therapy Association, the goal of physical therapy or physiotherapy is to improve mobility, restore function, reduce pain, and prevent further injury by using a variety of methods, including exercises, stretches, traction, electrical stimulation, and massage. Physical therapy has been reported useful in neurological disorders.
Prognosis: HD usually runs its full terminal course in 10-30 years. It has been observed that the earlier in life the symptoms of HD appear, the faster the disease progresses. The bedridden patient in the final stages of HD often dies from complications such as heart failure or pneumonia. Juvenile HD runs its course comparatively fast, with death typically occurring in about 10 years.
Integrative therapies
Note: Although few clinical studies exist using integrative therapies for the treatment of Huntington's disease (HD), there have been studies in other neurological disorders that may present with similar symptoms as HD. Listed below are integrative therapies that have been studied clinically in various movement disorders.
Good scientific evidence:
5-HTP: 5-HTP is the precursor for serotonin. Serotonin is the brain chemical associated with sleep, mood, movement, feeding, and nervousness. Cerebellar ataxia results from the failure of part of the brain to regulate body posture and limb movements. 5-HTP has been observed to have benefits in some people who have difficulty standing or walking due to cerebellar ataxia. However, current evidence is mixed. Further research is needed before a strong conclusion can be drawn.
Avoid 5-HTP if allergic or hypersensitive to it. Signs of allergy to 5-HTP may include rash, itching, or shortness of breath. Avoid with eosinophilia syndromes, Down syndrome, or mitochondrial encephalomyopathy. Use cautiously if taking antidepressant medications, 5-HTP receptor agonists, carbidopa, phenobarbital, pindolol, reserpine, tramadol, or zolpidem. Use cautiously with kidney insufficiency, HIV/AIDS (particularly HIV-1 infection), epilepsy, or with a history of mental disorders. Avoid if pregnant or breastfeeding.
Music therapy: Music therapy has been reported to improve symptoms in people with Parkinson's disease. Modest improvements were seen in symptoms including: motor coordination, speech intelligibility and vocal intensity, bradykinesia (slow movement), emotional functions, activities of daily living, and quality of life. Music therapy is generally known to be safe.
Zinc: Wilson's disease is an inherited disorder of copper metabolism characterized by a failure of the liver to excrete copper, which leads to its accumulation in the liver, brain, cornea, and kidney, with resulting chronic degenerative changes. Early research suggests that zinc treatment may be effective in the management of Wilson's disease. More well-designed trials are needed to confirm these early results.
Zinc is generally considered safe when taken at the recommended dosages. Avoid zinc chloride since studies have not been done on its safety or effectiveness. While zinc appears safe during pregnancy in amounts lower than the established upper intake level, caution should be used since studies cannot rule out the possibility of harm to the fetus.
Unclear or conflicting scientific evidence:
Acupressure, Shiatsu: The practice of applying finger pressure to specific acupoints (energy points) throughout the body has been used in China since 2000 B.C. Shiatsu technique involves finger pressure at acupoints and along body meridians (energy lines). It can incorporate palm pressure, stretching, massaging, and other manual techniques. Shiatsu practitioners commonly treat musculoskeletal and psychological conditions, including neck/shoulder and lower back problems, arthritis, depression, and anxiety. Acupressure may benefit several measures of severity of Parkinson's disease. Preliminary clinical evidence from one small study with individuals with facial spasms reported improvement when using Shiatsu acupressure. Further study is needed before conclusion can be made.
Acupressure appears to be safe if self-administered or administered by an experienced therapist. Serious, long-term complications have not been reported, according to available scientific data. Hand nerve injury and herpes zoster ("shingles") cases have been reported after shiatsu massage. Forceful acupressure may cause bruising.
Acupuncture: Aucupuncture has been reported to help relieve symptoms of some neurological disorders, including cerebral palsy, nerve damage, Parkinson's disease (characterized by fine muscle coordination and tremors), Tourette's syndrome (characterized by "tics"), and trigeminal neuralgia. More trials need to be performed.
Needles must be sterile in order to avoid disease transmission. Avoid with valvular heart disease, infections, bleeding disorders, medical conditions of unknown origin, neurological disorders or if taking anticoagulants. Avoid on areas that have received radiation therapy and during pregnancy. Avoid electroacupuncture with irregular heartbeat or in patients with pacemakers. Use cautiously with pulmonary disease (like asthma or emphysema). Use cautiously in elderly or medically compromised patients, diabetics or with a history of seizures.
Alexander technique: The Alexander technique is an educational program that teaches movement patterns and postures with an aim to improve coordination and balance, reduce tension, relieve pain, alleviate fatigue, improve various medical conditions, and promote well-being. Preliminary research suggests that Alexander technique instruction may improve fine and gross movements and reduce depression in patients with Parkinson's disease. Well-designed human trials are necessary.
Serious side effects have not been reported in the available literature. It has been suggested that the technique may be less effective with learning disabilities or mental illnesses. The Alexander technique has been used safely in pregnant women.
Arginine: Arginine, or L-arginine, is considered a semi-essential amino acid because although it is normally synthesized in sufficient amounts by the body, supplementation is sometimes required. Injections of arginine have been proposed to help manage adrenoleukodystrophy (ALD), although most study results are inconclusive. Further research is needed to evaluate the use of arginine in ALD and other neurological conditions.
Avoid if allergic to arginine. Avoid with a history of stroke or liver or kidney disease. Avoid if pregnant or breastfeeding. Use cautiously if taking blood-thinners, blood pressure drugs, antidiabetic drugs, or herbs or supplements with similar effects. Blood potassium levels should be monitored. L-arginine may worsen symptoms of sickle cell disease.
Ashwagandha: Ashwagandha (
Withania somnifera) is widely cultivated in India and the Middle East for its medicinal properties, and it is also found in parts of Africa. There is insufficient scientific evidence to determine if ashwagandha is a safe and effective treatment for Parkinson's disease.
Avoid if allergic or hypersensitive to ashwagandha products or any of their ingredients. Dermatitis (allergic skin rash) was reported in three of 42 patients in one ashwagandha trial.There are few reports of adverse effects associated with ashwagandha, but there are few human trials using ashwagandha and most do not report the doses or standardization/preparation used.Avoid with peptic ulcer disease. Ashwagandha may cause abortions based on anecdotal reports. Avoid if pregnant or breastfeeding.
Ayurveda: Ayurveda is a form of natural medicine that originated in ancient India more than 5,000 years ago. Ayurveda is an integrated system of techniques that uses diet, herbs, exercise, meditation, yoga, and massage or bodywork to achieve optimal health. There is evidence that the traditional herbal remedy
Mucuna pruriens may improve symptoms in Parkinson's disease and that it may offer advantages over conventional L-dopa preparations in the long-term management of the disorder. More studies are needed in this area.
Ayurvedic herbs should be used cautiously because they are potent, and some constituents may be potentially toxic if taken in large amounts or for a long time. Some herbs imported from India have been reported to contain high levels of toxic metals. Ayurvedic herbs may interact with other herbs, foods, and drugs. A qualified healthcare professional should be consulted before taking.
Belladonna: Belladonna has been used for centuries to treat many medical conditions. To date, human studies have shown a lack of benefit from belladonna in treating autonomic nervous system disorders.
Avoid if allergic to belladonna or plants of the Solanaceae(nightshade) family (bell peppers, potatoes, eggplants). Avoid with a history of heart disease, high blood pressure, heart attack, abnormal heartbeat, congestive heart failure, stomach ulcers, constipation, stomach acid reflux (serious heartburn), hiatal hernia, gastrointestinal disease, ileostomy, colostomy, fever, bowel obstruction, benign prostatic hypertrophy, urinary retention, narrow angle glaucoma, psychotic illness, Sj?gren's syndrome, dry mouth, neuromuscular disorders, (such as myasthenia gravis), or Down syndrome. Avoid if pregnant or breastfeeding.
Chiropractic: Chiropractic is a healthcare discipline that focuses on the relationship between musculoskeletal structure (primarily the spine) and body function (as coordinated by the nervous system) and how this relationship affects the preservation and restoration of health. Although there is not enough reliable scientific evidence to conclude the effects of chiropractic techniques in the management of Parkinson's disease, anecdotal reports suggest a positive impact on fine muscle coordination in some individuals. More clinical research is necessary.
Avoid with symptoms of vertebrobasilar vascular insufficiency, aneurysms, unstable spondylolisthesis, or arthritis. Avoid with agents that increase the risk of bleeding. Avoid in areas of para-spinal tissue after surgery. Avoid if pregnant or breastfeeding due to a lack of scientific data. Use extra caution during cervical adjustments. Use cautiously with acute arthritis, conditions that cause decreased bone mineralization, brittle bone disease, bone softening conditions, bleeding disorders, or migraines. Use cautiously with a risk of tumors or cancers.
Choline: Data regarding the effectivenses of choline in the treatment of Parkinson's disease is conflicting and inconclusive at this time.
Avoid if allergic/hypersensitive to choline, lecithin, or phosphatidylcholine. Use cautiously with kidney or liver disorders or trimethylaminuria. Use cautiously with a history of depression. If pregnant or breastfeeding it seems generally safe to consume choline within the recommended adequate intake (AI) parameters; supplementation outside of dietary intake is usually not necessary if a healthy diet is consumed.
Chromium: Chromium is an essential trace element that exists naturally in trivalent and hexavalent states. Chromium has been studied for its protective benefits in Parkinson's disease and is included in antioxidant multivitamins. However, there is lack of scientific evidence in humans in this area. Additional research is needed.
Trivalent chromium appears to be safe because side effects are rare or uncommon. However, hexavalent chromium may be poisonous. Avoid if allergic to chromium, chromate, or leather. Use cautiously with diabetes, liver problems, weakened immune systems (such as HIV/AIDS patients or organ transplant recipients), depression, Parkinson's disease, heart disease, and stroke and in patients who are taking medications for these conditions. Use cautiously if driving or operating machinery. Use cautiously if pregnant or breastfeeding.
Coenzyme Q10: Coenzyme Q10, or CoQ10, is produced by the human body and is necessary for the basic functioning of cells. There is promising evidence to support the use of CoQ10 in the treatment of symptoms associated with Friedrich's ataxia and Parkinson's disease. Better-designed trials are needed to confirm early study results.
Allergic reactions have not been associated with Coenzyme Q10 supplements, although rash and itching have been reported rarely. Stop use two weeks before and immediately after surgery/dental/diagnostic procedures with bleeding risks. Use cautiously with a history of blood clots, diabetes, high blood pressure, heart attack, or stroke, or if taking anticoagulants (blood thinners) or antiplatelet drugs, blood pressure drugs, blood sugar drgus, cholesterol drugs, or thyroid drugs. Avoid if pregnant or breastfeeding.
Cowhage: Cowhage (
Mucuna pruriens) seeds have been used in traditional Ayurvedic medicine to treat Parkinson's disease. Traditional Ayurvedic medicine and preliminary evidence suggests that cowhage contains 3.6-4.2% levodopa, the same chemical used in several Parkinson's disease drugs. Cowhage treatments have yielded positive results in early studies. However, more research should be conducted to determine the treatment that is most effective.
Avoid if allergic or hypersensitive to cowhage (Mucuna pruriens), its constituents, or members of the Fabaceae family. Avoid with psychosis or schizophrenia. Use cautiously with diabetes or Parkinson's disease or if taking levodopa, dopamine, dopamine agonists, dopamine antagonists, or dopamine reuptake inhibitors. Use cautiously if taking monoamine oxidase inhibitors (MAOIs) or other antidepressants or anticoagulants (blood thinners). Avoid if pregnant or breastfeeding, as cowhage may inhibit prolactin secretion.
Creatine: There is currently not enough scientific information to make a firm conclusion about the use of creatine in Huntington's disease. High-quality studies are needed to clarify this relationship.
Numerous studies suggest that creatine may help treat various neuromuscular diseases and may delay the onset of symptoms when used with standard treatment. However, creatine ingestion does not appear to have a significant effect on muscle creatine stores or high-intensity exercise capacity in individuals with multiple sclerosis, and supplementation does not seem to help people with tetraplegia. Although early studies were encouraging, recent research reports no beneficial effects on survival or disease progression. Additional studies are needed to provide clearer answers.
It is unclear if creatine is helpful in patients with spinal cord injuries. Results from early studies have been mixed. Further studies are required before a firm conclusion can be made.
Avoid if allergic to creatine or if taking diuretics. Use cautiously with asthma, diabetes, gout, kidney disorders, liver or muscle problems, stroke, or with a history of these conditions. Avoid dehydration. Avoid if pregnant or breastfeeding.
DHEA: There is conflicting scientific evidence regarding the use of DHEA (dehydroepiandrosterone) supplements for myotonic dystrophy. Better research is necessary before a clear conclusion can be drawn.
Avoid if allergic to DHEA. Avoid with a history of seizures. Use cautiously with adrenal or thyroid disorders or if taking anticoagulants or drugs, herbs, or supplements for diabetes, heart disease, seizure, or stroke. Stop use two weeks before and immediately after surgery/dental/diagnostic procedures with bleeding risks. Avoid if pregnant or breastfeeding.
Dong quai: Dong quai (
Angelica sinensis), also known as Chinese Angelica, has been used for thousands of years in traditional Chinese, Korean, and Japanese medicine. There is insufficient evidence to support the use of Dong quai as a treatment for nerve pain. High-quality human research is lacking.
Although Dong quai is accepted as being safe as a food additive in the United States and Europe, its safety in medicinal doses is unknown. Long-term studies of side effects are lacking. Avoid if allergic/hypersensitive to Dong quai or members of the Apiaceae/Umbelliferae family (like anise, caraway, carrot, celery, dill, parsley). Avoid prolonged exposure to sunlight or ultraviolet light. Use cautiously with bleeding disorders or if taking drugs that may increase the risk of bleeding. Use cautiously with diabetes, glucose intolerance, or hormone-sensitive conditions (like breast cancer, uterine cancer, or ovarian cancer). Do not use before dental or surgical procedures. Avoid if pregnant or breastfeeding.
Feldenkrais Method?: The Feldenkrais Method? involves stretching, reaching, and changing posture in specific patterns. In some cases, it includes a form of massage. Patients who practice complementary alternative medicine methods have reported that the Feldenkrais Method?, as well as breathing therapy, massage, and relaxation techniques, helped improve symptoms of dystonia. Further data are needed before a firm conclusion can be made. There is currently not enough clinical evidence to determine if the Feldenkrais Method? is an effective treatment for cerebral palsy.
There is currently a lack of available scientific studies or reports of safety of the Feldenkrais Method?.
Ginseng: A clinical study found that patients with neurological disorders may improve when taking Asian ginseng (
Panax ginseng). This supports research findings that report
Panax ginseng improving cognitive function. More research is needed in this area.
Avoid with known allergy to plants in the Araliaceae family. There has been a report of a serious life-threatening skin reaction, possibly caused by contaminants in ginseng formulations.
Kava: Kava beverages, made from dried roots of the shrub
Piper methysticum, have been used ceremonially and socially in the South Pacific for hundreds of years and in Europe since the 1700s. There is currently unclear evidence on the use of kava for Parkinson's disease. Kava has been shown to increase 'off' periods in Parkinson's patients taking levodopa and can cause a semicomatose state when given with alprazolam. Consult with a qualified healthcare professional before taking kava due to the risk of harmful side effects.
Avoid if allergic to kava or kavapyrones. Avoid with liver disease, a history of medication-induced extrapyramidal (the motor system related to the basal ganglia) effects, and chronic lung disease. Avoid if taking medications for liver disease or CNS depressants such as alcohol or tranquilizers. Avoid while driving or operating heavy machinery (may cause drowsiness). Use cautiously with depression or if taking antidpressants. Avoid if pregnant or breastfeeding.
L-carnitine: Although used traditionally for support of neurological conditions, one poorly designed preliminary clinical study reported that L-acetyl-carnitine (carnitine or L-carnitine) possesses neither efficacy nor toxicity towards the patients with Huntington disease. Further trials are required to determine is L-carnitine is beneficial in individuals with neurological disorders.
Early research on the use of carnitine for Rett's syndrome has produced promising results. However, additional research is needed before a firm conclusion can be made.
Avoid with known allergy or hypersensitivity to carnitine. Use cautiously with peripheral vascular disease, high blood pressure, alcohol-induced liver cirrhosis, or diabetes. Use cautiously in low birth weight infants and individuals on hemodialysis. Use cautiously if taking anticoagulants (blood thinners), beta-blockers, or calcium channel blockers. Avoid if pregnant or breastfeeding.
Massage:
Early evidence suggests a possible benefit of massage for cerebral palsy, Parkinson's disease, and spinal cord injuries. However, evidence is insufficient on which to base recommendations.
Avoid with bleeding disorders, low platelet counts, or if taking blood-thinning medications (such as heparin or warfarin/Coumadin?). Areas should not be massaged where there are fractures, weakened bones from osteoporosis or cancer, open/healing skin wounds, skin infections, recent surgery, or blood clots. Use cautiously with a history of physical abuse or if pregnant or breastfeeding. Massage should not be used as a substitute for more proven therapies for medical conditions. Massage should not cause pain to the client.
Melatonin: Melatonin is a naturally occurring hormone that helps regulate sleep/wake cycles (circadian rhythm). Melatonin has been reported useful in neurological conditions including Parkinson's disease, periodic limb movement disorder, Rett's syndrome, and tardive dyskinesia (abnormal movements that can occur after long-term use of some older antipsychotic drugs). The use of melatonin in these conditions, however, is not supported by rigorous scientific testing. Better-designed research is needed to determine if melatonin is beneficial in individuals with neurological disorders.
Avoid melatonin supplementation in women who are pregnant or attempting to become pregnant. Use cautiously with bleeding disorders, seizure disorders, or if taking anticoagulants.
Moxibustion: Moxibustion uses the principle of heat to stimulate circulation and break up congestion or stagnation of blood and chi (energy). One small study reported treatment of trigeminal neuralgia with cupping to have a significant therapeutic effect. However, there is insufficient available evidence and more clinical studies are needed in this area.
Avoid with aneurysms, any kind of "heat syndrome," heart disease, convulsions or cramps, diabetic neuropathy, extreme fatigue and/or anemia, fever, or inflammatory conditions. Avoid areas with an inflamed organ, contraindicated acupuncture points, allergic skin conditions, ulcerated sores, or skin adhesions. Avoid over the face, genitals, head, or nipples. Avoid in patients who have just finished exercising or taking a hot bath or shower. Avoid if pregnant or breastfeeding. Use cautiously over large blood vessels and thin or weak skin. Use cautiously with elderly people with large vessels. It is considered not advisable to bathe or shower for up to 24 hours after a moxibustion treatment.
Physical therapy: There is evidence for the use of physical therapy for nerve or neurological disorders such as cerebral palsy, Guillain-Barre Syndrome (GBS), and Parkinson's disease. Additional high-quality studies are needed.
Not all physical therapy programs are suited for everyone, and patients should discuss their medical history with their qualified healthcare professionals before beginning any treatments. Physical therapy may aggravate pre-existing conditions. Persistent pain and fractures of unknown origin have been reported. Physical therapy may increase the duration of pain or cause limitation of motion. Pain and anxiety may occur during the rehabilitation of patients with burns. Both morning stiffness and bone erosion have been reported in the literature, although causality is unclear. Erectile dysfunction has also been reported. Physical therapy has been used in pregnancy, and although reports of major adverse effects are lacking in the available literature, caution is advised nonetheless. All therapies during pregnancy and breastfeeding should be discussed with a licensed obstetrician/gynecologist before initiation.
Psychotherapy: Psychotherapy is an interactive process between a person and a qualified mental health professional. The patient explores thoughts, feelings, and behaviors to help with problem solving. Supportive psychotherapy may or may not reduce the motor and vocal tics associated with Tourette's syndrome. More research needs to be done before conclusions can be made. Some forms of psychotherapy may evoke strong emotional feelings and expression.
Qi gong: Qi gong is a type of traditional Chinese medicine (TCM) that is thought to be at least 4,000 years old. It is traditionally used for spiritual enlightenment, medical care, and self-defense. There is promising early evidence suggesting that internal Qi gong may help in the treatment of Parkinson's disease. However, the evidence is somewhat unclear, and further research is needed.
Qi gong is generally considered to be safe in most people when learned from a qualified instructor. Use cautiously with psychiatric disorders.
Reiki: Reiki is a system of laying on of the hands that originated in as a Buddhist practice approximately 2,500 years ago. Human study suggests that reiki may have an effect on autonomic nervous system functions such as heart rate, blood pressure, or breathing activity, important in neurological disorders that may damage autonomic function, including neurological conditions. Large, well-designed studies are needed before conclusions can be drawn.
Reiki is not recommended as the sole treatment approach for potentially serious medical conditions and should not delay the time it takes to consult with a healthcare professional or receive established therapies. Use cautiously with psychiatric illnesses.
Rolfing? Structural Integration:Rolfing? Structural Integration involves deep tissue massage aimed at relieving stress and improving mobility, posture, balance, muscle function and efficiency, energy, and overall well being. Rolfing? Structural Integration may slightly improve movement in cerebral palsy patients. More studies are needed to confirm these possible benefits.
Rolfing? Structural Integration should not be used as the sole therapeutic approach to disease, and it should not delay the time it takes to speak with a healthcare provider about a potentially severe condition. Rolfing? Structural Integration is generally believed to be safe in most people. Avoid in patients taking blood thinners and in patients with broken bones, severe osteoporosis, disease of the spine or vertebral disks, skin damage or wounds, bleeding disorders, blood clots, tooth abscesses, acute disc problems, aneurysm, fever, recent scar tissue, connective tissue disease, cancer, and in patients who have just received cortisone shots or who are on chronic cortisone therapy. Use cautiously in patients with varicose veins or phlebitis, joint diseases, psychosis or bipolar disorder, severe kidney, liver, or intestinal disease, diabetes, menstruation, infectious conditions, colostomies, high blood pressure, and stenoses or strictures.
Safflower: In clinical research, safflower (
Carthamus tinctoria) decreased deterioration caused by Friedreich's ataxia. More high-quality studies with larger sample sizes are needed to establish safflower's effect on neurological conditions.
Avoid if allergic/hypersensitive to safflower, Carthamus tinctorius, safflower oil, daisies, ragweed, chrysanthemums, marigolds, or any related constituents. Use parenteral safflower oil emulsions cautiously in newborns. Use cautiously if taking anticoagulants (blood thinners) or anti-platelet drugs, immunodepressants or pentobarbital. Use cautiously with diabetes, low blood pressure, liver problems, bleeding disorders, or skin pigmentation conditions. Use cautiously if pregnant or breastfeeding.
Selenium: Studies have consistently shown that antioxidants may not have clinical benefits in motor neuron diseases, such as amyotrophic lateral sclerosis (ALS). Although the research thus far does not discourage selenium supplementation in patients, more research is needed to determine if selenium is an effective treatment for central nervous system disorders.
Avoid if allergic or sensitive to products containing selenium. Avoid with a history of non-melanoma skin cancer. Selenium is generally regarded as safe for pregnant or breastfeeding women. However, animal research reports that large doses of selenium may lead to birth defects.
Tai chi: Tai chi is a system of movements and positions believed to have developed in 12th Century China. Tai chi techniques aim to address the body and mind as an interconnected system and are traditionally believed to have mental and physical health benefits to improve posture, balance, flexibility, and strength. Community-based fitness programs, which include tai chi classes, may improve balance in patients with Parkinson's disease and may motivate individuals to participate in routine exercise. Additional research is warranted in this area.
Avoid with severe osteoporosis or joint problems, acute back pain, sprains, or fractures. Avoid during active infections, right after a meal, or when very tired. Some believe that visualization of energy flow below the waist during menstruation may increase menstrual bleeding. Straining downwards or holding low postures should be avoided during pregnancy, and by people with inguinal hernias. Some tai chi practitioners believe that practicing for too long or using too much intention may direct the flow of chi (qi) inappropriately, possibly resulting in physical or emotional illness. Tai chi should not be used as a substitute for more proven therapies for potentially serious conditions. Advancing too quickly while studying tai chi may increase the risk of injury.
Taurine: Taurine may affect cellular hyperexcitability by increasing membrane conductance to potassium and chloride ions, possibly by altering intracellular (within the cell) availability of calcium. Study results suggest that taurine supplementation may result in improvements in myotonic dystrophy. Well designed clinical trials are needed.
Taurine is an amino acid, and it is unlikely that there are allergies related to this constituent. However, allergies may occur from multi-ingredient products that contain taurine. Use cautiously in patients with high cholesterol, low blood pressure, bleeding disorders, potential for mania, or epilepsy. Avoid consuming energy drinks containing taurine, caffeine, glucuronolactone, B vitamins, and other ingredients before drinking alcohol or exercising. Use cautiously if pregnant or breastfeeding because taurine is a natural component of breast milk.
TENS: Transcutaneous electrical nerve stimulation (TENS) is a non-invasive technique in which a low-voltage electrical current is delivered through wires from a small power unit to electrodes located on the skin. Electrodes are temporarily attached with paste in various patterns, depending on the specific condition and treatment goals. Several studies have reported benefits of TENS therapy in patients with trigyminal neuralgia (facial pain), hemiplegia/hemiparesis, and spinal cord injury. Additional research is needed before a firm conclusion can be drawn.
Avoid with implantable devices, such as defibrillators, pacemakers, intravenous infusion pumps, or hepatic artery infusion pumps. Use cautiously with decreased sensation (such as neuropathy) or with seizure disorders. Avoid if pregnant or breastfeeding.
Therapeutic touch: Therapeutic touch (TT) practitioners hold their hands a short distance from the patient without actually making physical contact. The purpose of this technique is to detect the patient's energy field, allowing the TT practitioner to correct any perceived imbalances. There is some evidence that therapeutic touch may affect some properties of the central nervous system. However, further research is needed to examine whether therapeutic touch could have any effects on central nervous system disorders.
Therapeutic touch is believed to be safe for most people. Therapeutic touch should not be used for potentially serious conditions in place of more proven therapies. Avoid with fever or inflammation and on body areas with cancer.
Vitamin B6: Vitamin B6 (pyridoxine) is required for the synthesis of the neurotransmitters serotonin and norepinephrine and for myelin formation. Pyridoxine deficiency in adults principally affects the peripheral nerves, skin, mucous membranes, and the blood cell system. In children, the central nervous system (CNS) is also affected. Major sources of vitamin B6 include cereal grains, legumes, vegetables (carrots, spinach, and peas), potatoes, milk, cheese, eggs, fish, liver, meat, and flour. Some prescription drugs called neuroleptics, which are used in psychiatric conditions, may cause movement disorders as an unwanted side effect. Vitamin B6 has been studied for the treatment of acute neuroleptic-induced akathisia (NIA, a neuromuscular disorder characterized by a feeling of "inner restlessness" or a constant urge to be moving) in schizophrenic and schizoaffective disorder patients. Preliminary results indicate that high doses of vitamin B6 may be useful additions to the available treatments for NIA, perhaps due to its combined effects on various neurotransmitter systems. Further research is needed to confirm these results.
There is also early evidence that pyridoxine supplementation may be of benefit in hyperkinetic cerebral dysfunction syndrome and tardive dyskinesia. Further research is needed before a recommendation can be made.
Vitamin B6 is likely safe when used orally in doses not exceeding the recommended dietary allowance (RDA). Avoid vitamin B6 products if sensitive or allergic to any of their ingredients. Some individuals seem to be particularly sensitive to vitamin B6 and may have problems at lower doses. Avoid excessive dosing. Use cautiously if pregnant or breastfeeding.
Vitamin E: Vitamin E has been studied in the management of tardive dyskinesia (abnormal movements that can occur after long-term use of some older antipsychotic drugs) and Parkinson's disease, although the results of existing studies are not conclusive enough to form a clear recommendation. More research is needed.
Avoid if allergic or hypersensitive to vitamin E. Avoid with retinitis pigmentosa (loss of peripheral vision). Use cautiously with bleeding disorders or if taking blood thinners. Avoid doses greater than the recommended daily level in pregnant women and breastfeeding women.
Yohimbe bark extract: The terms yohimbine, yohimbine hydrochloride, and yohimbe bark extract are related but not interchangeable. Yohimbine is an active chemical (indole alkaloid) found in the bark of the
Pausinystalia yohimbe tree. Yohimbine hydrochloride is a standardized form of yohimbine that is available as a prescription drug in the United States. It is theorized that yohimbine may improve orthostatic hypotension (lowering of blood pressure with standing) or other symptoms of autonomic nervous system dysfunction. However, yohimbe bark extract may not contain significant amounts of yohimbine, and therefore may not have these proposed effects. More research is needed before a recommendation can be made.
Yohimbine is generally well tolerated in recommended doses. However, many side effects have been reported with yohimbine hydrochloride and may apply to yohimbe bark. Avoid if allergic to yohimbe, any of its components, or yohimbine-containing products. Use cautiously with peptic ulcer disease, kidney disease, high blood pressure, heart disease, or if taking drugs that affect blood sugar levels. Avoid with benign prostate hypertrophy (enlarged prostate), anxiety, mania, depression, stress disorders, post-traumatic stress disorders, bipolar disorders, or schizophrenia. Avoid use in children or in pregnant or breastfeeding women.
Fair negative scientific evidence:
Choline: Choline is possibly ineffective when taken by mouth for treating cerebellar ataxia. More research is needed in this area.
Avoid if allergic/hypersensitive to choline, lecithin, or phosphatidylcholine. Use cautiously with kidney or liver disorders or trimethylaminuria. Use cautiously with a history of depression. If pregnant or breastfeeding it seems generally safe to consume choline within the recommended adequate intake (AI) parameters; supplementation outside of dietary intake is usually not necessary if a healthy diet is consumed.
Coenzyme Q10: There is negative evidence from studies that used coenzyme Q10 in the treatment of Huntington's disease. More studies are needed to confirm these results.
Allergy associated with coenzyme Q10 supplements has not been reported in the available literature, although rash and itching have been reported rarely. Stop use two weeks before surgery/dental/diagnostic procedures with bleeding risk and do not use immediately after these procedures. Use caution if history of blood clots, diabetes, high blood pressure, heart attack, or stroke, or with anticoagulants (blood thinners) or antiplatelet drugs (like aspirin, warfarin, clopidogrel (like Plavix?), blood pressure, blood sugar, cholesterol or thyroid drugs. Avoid if pregnant or breastfeeding.
Creatine: Overall, the evidence suggests that creatine supplementation may not offer benefit to individuals with amyotrophic lateral sclerosis (ALS).
Avoid if allergic to creatine or if taking diuretics. Use cautiously with asthma, diabetes, gout, kidney disorders, liver or muscle problems, stroke, or with a history of these conditions. Avoid dehydration. Avoid if pregnant or breastfeeding.
Octacosanol: Policosanol is a mixture of very long chain alcohols that is purified from sugar cane wax. About 67% of policosanol is octacosanol. Although some research has been conducted using policosanol, little research is currently available that focuses on octacosanol alone. Early study does not show any evidence of benefit in brain or lung symptoms of amyotropic lateral sclerosis (ALS) patients. Additional study is needed in this area.
Avoid if allergic or hypersensitive to octacosanol or policosanol. Use cautiously if taking nitrates, lipid-lowering agents, cholesterol absorption inhibitors, nutraceuticals, aspirin, or agents that lower blood pressure. Avoid if pregnant or breastfeeding.
Prevention
Diet: Nutritional changes along with the addition of supplements (vitamins, minerals, and herbs) may be effective in reducing symptoms associated with neurological disorders.
Avoid caffeine and other stimulants, alcohol, and smoking.
It may be best to eliminate potential food allergens, including dairy (milk, cheese and sour cream), eggs, nuts, shellfish, wheat (gluten), corn, preservatives, and food additives (such as dyes and fillers). Food allergies can be a contributing factor in neurological imbalance.
Avoid refined foods such as white breads, pastas, and sugar. Doughnuts, pastries, bread, candy, soft drinks, and foods with high sugar content may all contribute to worsening symptoms of neurological disorders.
Food can be cut into small pieces, softened, or pureed to ease swallowing and prevent choking. While some foods may require the addition of thickeners, other foods may need to be thinned. Dairy products, in particular, tend to increase the secretion of mucus, which in turn increases the risk of choking.
Exercise: Maintaining physical fitness is important to those suffering from neurological conditions. Those with neurological conditions such as Huntington's disease (HD) who exercise and keep active tend to do better, with less symptoms and a slower disease progression, than those who do not. A daily regimen of exercise can help the person feel better physically and mentally. Individuals should walk as much as possible, even if assistance is necessary. Talking with a healthcare provider about an exercise program is important.
Patient and family resources: A number of resources are available to help ensure that HD patients receive appropriate care and that caregivers obtain necessary support. Doctors, federal, state, or local health service agencies, and HD patient organizations may be able to provide information concerning community resources. These may include social and legal services, therapeutic work and recreational centers, home healthcare services (including occupational therapy and nursing assistance), group housing facilities, or institutional care. Although many families prefer to keep affected relatives at home, it may sometimes become necessary to consider long-term institutional care. Patient organizations may be able to provide referrals to facilities that fulfill the necessary standards for care of HD patients.
Author information
This information has been edited and peer-reviewed by contributors to the Natural Standard Research Collaboration (www.naturalstandard.com).
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