What do we know about alternative treatments of epilepsy" Enrique Feoli MD North East Regional Epilepsy 2014 Alternative Treatments Complementary and Alternative medicines (CAM) Non conventional therapies Herbs and Epilepsy CAM Complimentary and Alternative CAM On the rise 42% US 65% Germany 20% UK 1/6 people taking Rx also take Herbal > 50 y.o.: 2.66 herbals and 2.26 Rx CAM < 40% share their use with Drs. Legislation requiring regulation/licensing of Herbs in Germany, France, Sweden, Australia. In US the Dietary Supplement Health and Education Act of 1994 removed these products from FDA jurisdiction Herbs for Epilepsy Valerian root Skullcap European Mistletoe Marijuana Black cohosh Lobelia Kava Hyssop Blue vervain Yarrow Geranium Kelp Bupleurum Passion flower Carline thistle Elderberry Mugwort Lady’s slipper Aloe Betony European Peony Ginseng Flax seed oil Ginger Linden Chrysanthemum Forskolin Behen Burning bush Calotropis Gotu Kola Groundsel Lily of the Valley Tree of Heaven Yew How often do people take herbs? Overall use of complementary and alternative medicines (CAM) in U.S. 1990-1997. Herbal product use increased 4x In 1997, adults - 33 million office visits regarding herbal products & high-dose vitamins; spent ~$8 billion In 1997, ~15 million adults took prescription medications with herbs and/or high-dose vitamins Eisenberg et al. JAMA 1998;280:1569-75. How often do people take herbs? Herb Top 10 selling herbs and dietary supplements: 2002 U.S. sales ($ millions) Gingko biloba 150 Echinacea 70 Garlic 50 Ginseng 40 Soy 35 Saw palmetto 30 St. John’s wort 30 Valerian 16 How often do persons with epilepsy take herbs? U.S. and England studies: Up to 1 in 3 persons with epilepsy use CAM Most do not discuss their CAM use with doctors Herbs taken include ginseng, St. John’s wort, melatonin, gingko biloba, garlic and black cohosh Treat seizures (<10%), other symptoms (20%), and general health (>70%) Peebles et al. Epilepsy Behav 2000;1:74-7 Easterford et al. Epilepsy Behav 2005;6:59-62 Federal regulation of herbs Herbal products are classified by the government as dietary supplements. Dietary supplements are regulated by the 1994 Dietary Supplement and Health Education Act (DSHEA); prescription drugs - much more rigorous requirements of the Federal Food, Drug, and Cosmetic Act. Federal standards by DSHEA Claim -- an effect on bodily structure or function, not against a specific disease. Label must include a disclaimer that FDA has not evaluated the product Federal regulation of herbs Not required to be produced under Good Manufacturing Process standards, like drugs No government agency (eg, FDA) independently verifies the quality/production Could be contaminated with microbes, pesticides, toxic metals, or adulterated (eg, herbs or drugs) Potency and amount per pill/capsule may vary significantly within the same bottle or from batch to batch, or from one branded product to another Federal regulation of herbs Standards set forth by the DSHEA: Manufacturers are responsible for the truthfulness of labeling claims No government agency independently reviews and verifies the claims and supporting evidence Only manufacturers control product quality and verify safety Standardization How much of the active ingredient? For example, bottle says “carbamazepine 200 mg” This is a major problem for herbal products because the active ingredient (s) are usually not known the amount of the assumed active ingredient may vary from pill to pill and product to product it is usually not possible to measure levels in the blood to guide dosage ? The active ingredient St. John's wort standardized by its content of hypericin (typically to 0.3% hypericin) Hypericin not confirmed as the active ingredient Case 40 y/o woman with epilepsy well controlled on CBZ Was feeling depressed and began to take St John’s wort. She had multiple recurrent seizures and came to the office for a follow up. She did disclose that she began a over he counter tx. Problem; St john’s W, decreases the effectiveness of CBZ You wonder whether St. John’s wort could affect your carbamazepine or birth control pill, and whether it is safe and actually helps depression Herbal Anticonvulsants: Mechanisms Sedative effect/improved sleep: Valerian, Kava, Lobelia, passion flower. Increase in brain GABA/GABA receptors (Valerian, Kava) Agonist of benzodiazepine receptors (Passion flower). Antioxidants (TJ-960) Herb/AED Interactions Don’t use Valerian or Kava with alcohol, barbiturates, benzos- sedation/coma. Hemorrhagic complications with Gingko and St. John’s wort. St. John’s wort can lower carbamazepine levels. Shankapulshpi (Ayurvedic formula) decreases 1/2 life of phenytoin and decreases its efficacy. Tell your physician about herb use; anticipate potential for interactions. Herbs and Seizure Medications Increase Side effects Valerian Root Kava Kava Passion Flower Chamomile Herbs that cause Seizures Kava Kava: GTC from toxicity and withdrawal. Marijuana: intoxication or withdrawal. Skullcap: confusion and convulsions with high doses. Ma Huang: has ephedrine, pseudoephedrine, lowers threshold. Gamolenic acid lowers seizure threshold: evening primrose oil, borage (starflower). Goldenseal: hydrastine lowers threshold. Ginseng: lowers threshold. Ginkgo biloba: GTCs reported. Neurotoxin 4’-omethylpyridoxine. Thujone-containing herbs: wormwood, sage; lower threshold. Herbs and seizures Worsen seizures Ephedra Ma Huang Mate Guarana Borage oil ? Ginkgo ? Ginseng Bad Effects on Serum Concentration of AED’s (HerbDrug interactions) P450 enzymes: St. John’s wort Garlic Echinacea Pine bark extract Pygenol Milk thistle American hellebore Gingko Mugwort Pipissewa Side-Effects of Herbs Natural doesn’t equal safe! Herbs and herbal preparations contain many compounds. Black cohosh, Valerian, green tea have tannins - can affect absorption of Ca, Cu, Fe, Mg. Black cohosh can cause miscarriage via uterine stimulation. Lobelia - respiratory paralysis and death. Samuels et al, 2008 What are the Ingredients? Epi-Still is a 100% herbal formula and contains the following ingredients in therapeutic dosage: Passion flower, Skullcap, Cicuta virosa (30C), and Cuprum metallicum (30C). Hello. I was just wondering if anyone has heard of the herbal medication for seizures called Epistill? I Synergy 02 More than 70 minerals More than 18 amino acids Plant source silica Active ingredient? Is it just water and minerals? No trails/tests indicating that is useful Take Home In any given person herbs may be helpful, but in most they likely are not In any given person herbs may worsen epilepsy Herbs definitely can effect AED levels No good studies Communication between doctors and patients is crucial Perspective Part II Non Conventional Therapies Yoga Biofeedback Aromatherapy Acupuncture Non Conventional Therapies Yoga Biofeedback Aromatherapy Acupuncture How effective are alternative or complementary approaches to epilepsy? No scientific research in epilepsy and there is very little evidence of their effectiveness Some people who have tried complementary treatments have felt that these have helped their epilepsy and improved their quality of life. Certainly, reducing stress can reduce seizures in some people, and or improve quality of life. Can relaxation, yoga control epilepsy? Some people have found that yoga or meditation helps them prevent stress-induced seizures and improves their quality of life Can epilepsy be controlled by acupuncture? the goal is to bring the person's health into a better mental, physical and emotional balance. Acupuncture has been used in patients with epilepsy with mixed results. Can epilepsy be controlled using aromatherapy? Aromatherapy uses pure aromatic oils from plants for stimulation and relaxation and to aid the healing process. Dr. Tim Betts, a British researcher, has had some success using oils on patients with epilepsy who can predict an imminent seizure. Can epilepsy be controlled through biofeedback? Biofeedback for epilepsy uses EEG machines to help people identify and alter their own seizurerelated brain activity. The person with epilepsy is trained over time to use relaxation or other biofeedback techniques to generate a more normalized brain wave pattern, which may in turn reduce their seizures. Take Home There are no scientific studies that support the use of non conventional therapies to control seizures. Some has shown to improve quality of life (yoga) Discuss with your doctor before starting any non conventional therapies Thank you for coming! We would like to hear from you Please submit your surveys 38 Please join us 4:15-4:45 Bergen/Ramapo Room Safe and effective core exercises for epilepsy patients Renata Joy 39