Re: Complementary & Alternatine Treatments for Epilepsy Conference Report

[Guest guest]

Arnold

Thank you for taking these exhaustive notes, god bless.

Kathy

[ ] Complementary & Alternatine Treatments for Epilepsy Conference Report

Hi List,

Its finally done!

Summary of Complementary & Alternative Therapies for Epilepsy Conference

This unique conference was held from Thursday November 8 through Saturday November 10,2001 at NYU Medical Center. It was an excellent presentation of some of the best methods used to Control this disease and related neurological problems.

At the beginning of the opening session I had my enthusiasm somewhat dampened, when one of the presenters went over a general introduction to the background of Complimentary and Alternative Medicine (CAM)after noting that its rigorous scientific and medical literature is often lacking and what exists, often does not meet the standards of "Science-based Medicine (SBM)". The characterization of Orthodox Medicine as scientifically based was somewhat disconcerting to say the least. I might point out to any of you reading this, and not familiar with the actual hard data on the subject that the Office of Technology Assessment (OTA) of the United States Congress conducted a review of all existing medical procedures used in the treatment of medical diseases found that "only 10 to 20% of all procedures currently used in medical practice have been shown to be efficacious by controlled trial." These therapies include coronary bypass surgery, various chemotherapy’s for cancer, preventive mastectomies for breast cancer, electroconvulsive therapy and brain surgery for epilepsy. This speaker’s handout even cited the history of medical quackery and approvingly gave the website of the quackbusters as an authority in evaluating medical treatments and claims. While a caveat was in order, I feel this was overkill, but perhaps understandable in view of the sea change which is taking place in the treatment of medical conditions.

Another handout was presented on behalf of a speaker who could not be present, supposedly detailing a confused patients’ perspective. The handout cited the studies of Dr.Eisenberg ringing the alarm bell that alternative therapists and providers are becoming widely accepted by patients. Eisenberg stated that the number of visits to all alternative therapy practitioners exceeded the number of visits to all primary care providers or first line medical doctors. Unfortunately this degree of acceptance and use is quite exaggerated.

By far the most widely used ‘alternative therapy’ is chiropractic care. Most chiropractors are NOT holistic. They confine themselves to back and spinal manipulation, only treating back or muscle pain which is highly conventional and accepted by all, except perhaps the quackbusters cited approvingly by one of the speakers. In other parts of the handout, the real picture of the actual use of CAM therapies is seen in the figures that less than 25% of Americans who see a medical doctor for serious health problems also use an unconventional therapy. In the review of treatment for seizure disorders the most widely used alternative is Prayer- 58%, Relaxation Techniques 46%, Nutritional Supplements 12% and little use of biofeedback,yoga. aromatherapy and acupuncture. The real total of what I would consider an alternative therapy is slightly over 12% using nutritional supplements--which is NOT synonymous with good nutrition-which deals with REAL FOOD not just supplements in a bottle.

Once these obligatory presentations were over the conference picked up and my hopes rose accordingly. Mr.Bernhard Muller,Dipl-Pad, presented an interesting review of how massage. There is a point below the nose and above the upper lip which has an effect on stopping seizures.Before approaching massage therapy you should make baseline observations, preferably in a diary, noting frequency and intensity of seizures and related symptoms. In order to derive the most benefit he suggested that you have regularly scheduled massages with a licensed masseur, keeping regular appointments. He recommended you try it at least a couple of times a week minimum, preferably even daily and learn to administer self massage or massage given by your significant other, who must be supportive. Try to keep any medication or other seizure effecting therapies constant during the trial of massage to isolate it’s effect. The massage should be given in a relaxing setting, listening to your favorite relaxing music. If you vary the essential oils used in the massage you should clearly note the effects of a change in the oils, aromas and seizure control. If the individual patient can be taught to self massage himself during a pre-seizure aura, this can avert a seizure. Mr.Mullers email in Germany is bmueller@...

his phone +49 6131-39 87 15 mail address: Lindenstr. 16, D - 67433 Neustadt/W.(Germany)

Dr. Gleberzon,DC presented the uses of chiropractic care for epilepsy. While no clinical trials have been conducted in treatment of epilepsy, there have been reports in the literature of successful resolution of epileptic seizures in 17 cases. Ten of the cases had the onset of seizures precipitated by trauma or injury to the body. Fourteen of the patients had ineffective seizure control with anti-epileptic drugs (AED).But there was no sudden or miracle cure reported. Some cases have reduced incidence of seizures on one case reducing from seizures accompanied by lower back pain every 3 hours prior to treatment and resulting in complete resolution of lower back pain and frequency of seizures to once every 2 months after an 18 month period of treatment. A 5 year old multiply impaired child experienc30 generalized tonic-clonic and absence seizures/ day while being treated with Dilantin and Phenobarbital. During the first week of treatment with 2 upper cervical adjustments reduced seizure frequency to 10/day. By the third week all tonic-clonic seizures stopped and between the seventh and twelfth week of therapy all seizures stopped. After another ten months the child’s neurologist discontinued all of the child’s AED. One of the benefits of chiropractic is the lack of serious side effects. There is reported to be some side effects in 49% of 1058 patients visiting a total of 102 chiropractors. Most reported a local discomfort in 53%, headache in 12% and tiredness in 11%. These were reported to be mild to moderate in 85% of cases. In 74% of these cases the side effect disappeared within 24 hours. This record of mild to no adverse effects with self limiting times and NO serious side effects is very encouraging. In looking for a chiropractor you should ask friends about recommendations. Each state has a professional association of Chiropractors. Dr.Gleberzon is an Assistant Professor at Canadian Memorial Chiropractic College his email: bglebezon@...

Dr Alan s,MD presented a discussion of Hormonal Therapy in the treatment of epilepsy. This dealt with women’s menstrual cycles correlating with epileptic seizures. This is called catamenial epilepsy. He said that frequently the patient has a low level of progesterone in the luteal phase of the menstrual cycle. The Luteal phase begins in the 14th day of the menstrual cycle. This imbalance is called unopposed estrogen and has to be offset by added progesterone. This is also lacking when the seizures are more frequent so it sometimes helps epilepsy.

Dr.Barry Sterman,PhD, spoke on Neurotherapy and Seizure Control. He has specialized in EEG biofeedback training. The level of seizures varies with the excitability of the relevant brain tissues measured by EEG. In 82% of the studies on neural excitability, when controlled was able to decrease seizures by about 50%. This is usually called an added stressor, observed by most patients that when they are very upset and or angry they are more susceptible to a seizure. He then proceeded to recommend meditation, relaxation etc. to gain control and lower the stress level. This is fine, if we lived in a world where the normal stress of everyday life could be reduced when we wanted to achieve a reduction. At this point I tried to point out that the B complex vitamins are also known as the anti-stress vitamins and are able to make people have the capacity to handle stressful situations in a better way and remain in control of the events around them. When my question-woven into a suggestion was elegantly sidestepped and compartmentalized to a future session on nutrition, I knew I would have to be prepared to distribute a handout on my experience with B Complex vitamins.

Dr.Viola Frymann,DO,FAAO,FCA presented a session on Osteopathy for Epilepsy. Osteopathy is the manipulation of bone structure, particularly in the head and neck area in treating epilepsy which has met with success.

Dr.Amy Rothenberg,ND a naturopath from Enfield Connecticut presented a very interesting talk on Homeopathy. For those of you unfamiliar with Homeopathy it is a 200 year old therapy based on the observation that, when sick patients are given an extremely dilute formulation of a substance that CAUSES the same symptom in healthy people, it cures the sick person. At first blush, it sounds counter-intuitive , but it works. Modern Science has tried to isolate and identify the substance in homeopathic remedies, but it has been completely unproductive. There is no measurable trace of the original antigen which was present in the original preparation. The opinion is frequently expressed that chemical analysis shows that there is nothing measurable in the homeopathic formula that could be responsible for the healing and any effect is considered by these scientists to be attributable to the placebo effect. But when tested the homeopathic remedies are successful far in excess of a placebo. Homeopathy is very comprehensive and detailed histories of the patients symptoms, attitudes, types of seizures, what precipitates a seizure, digestion, urination, sleeping patterns and positions, musculoskeletal system, headaches, emotional factors irritability, anger, food cravings,weather preferences etc. these factors paint an entire picture of the patients’ health. The Homeopathic doctor then tries to pick the correct remedy for the patients overall condition. She said that Homeopathy could be used concurrently with the patients AED’s so it is not necessary to discontinue conventional drugs prior to using Homeopathy. Homeopathy is practiced by some Medical Doctors(MD) some Osteopaths (DO) some Chiropractors(DC), some naturopaths(ND) and some laypersons. The naturopaths are licensed in only 14 states. Connecticut licenses Naturopaths. New York does not. In order to find a homeopathic physician contact the National Center of Homeopathy Email: nch@... telephone 703-548-7792

Mail: 801 N. Fairfax Street, andria,VA 22314

www.homeopathic.org OR

The Homeopathic Academy of Naturopathic Physicians email: hanp@...

telephone 503-761-3298

Mail: 12132 SE , Portland.OR 97266 OR

American Association of Naturopathic Physicians email: info@...

telephone 703-610-9037

mail: 8201 Greenboro Drive #300,Mc Lean,VA 22101

Simon Taffler,DCH, PCH also lectured on Homeopathy and explained its global diagnosis as trying to find ways of correcting underlying disharmonies in the body. He had a good handout on a graphically detailed description of a case of epileptic seizures with other factors indicating a fear of claustrophobia in narrow places. Had hay fever and Premenstrual Syndrome.An aura from throat to the uterus prior to seizures as if hot water is poured down the neck. Patient is overcome by a feeling of everything being yellow and losing control. Hearing people, but not understanding what they are saying. Then extreme tiredness and a seizure and all the lights turn off. Jaw moves and tongue is chewed. Patient wakes up bruised tired and exhausted. Feeling of wanting to be alone. Metallic taste. Aversion to company, wants to be alone. The Remedy in this case was Laschesis. Over 17 months the patient reduced conventional drugs as her confidence in homeopathy increased. During the following 3 years she was seizure free with no hay fever or premenstrual symptoms. controlled with homeopathy

Mr.Taffler is from London, his tel. +44 20 7388 8030 or 212 560- 5661

website: www.lifeworks.org.uk

Other Resources on Homeopathy:

www.homeopathyhome.com a comprehensive internet site with a reference library of on line books, contacts, links and more.

The Society of Homeopaths (SOH), 4a Arizona Road, Northhampton,NN1 4HU, England

tel. +44(0) 1604 621400 website: www.homeopathy-soh.org

The North American Society of Homeopaths (NASH), 1122 East Pike Street #1122, Seattle, WA 98122 tel. 206-720-7000 website: www.homeopathy.org

www.homeopathic.com Dana Ullman’s educational site including his research articles

www.hom.inform.org The British Homeopathic Library at Glasgow Homeopathic Hospital, an on line library and information service.

www.likecureslike.org A resource introducing homeopathy. materia medica and first aid treatments.

Dr. Coralee ,MD presented an interesting theory about the importance of Carbon Dioxide levels in enhancing brain function. It came as a surprise to me,since I always focused on enhancing the good oxygen intake and getting rid of the Carbon dioxide. But there is an instinctive relationship which forces the body--actually the lungs to take in a DEEP breath of fresh oxygen when it senses a high level of Carbon Dioxide. Dr. is the Medical Director at the Institute for the Achievement of Human Potential(IAHP). Her work at the Institute, which was presented in her workshop on Saturday with Dr. Malkowicz,MD a neurologist specializing in epilepsy. Dr.Malkowicz is very traditionally trained and has a background that includes epilepsy surgery and investigational new drug research. She is a consulting neurologist at IAHP. The workshop was one of the most inspiring displays of the possible advances attainable in overcoming the most severe and debilitating brain injuries using enhanced breathing techniques fully taking in fresh oxygen,Very Strong and Constant Stimulation of the Brain and Senses of the children, A very healthy nutritional intake of Real Foods and Juices needed to nourish the mind and body. I might add that this workshop was the only time I heard it mentioned during the entire conference that FOOD was a key factor in development of proper brain function. IAHP’s intensive therapy has had fantastic results in regaining neurological development and eventually greatly reducing and ultimately eliminating AED use. I might even hypothesize that a large measaure of the cognitive functioning strides seen are specifically due to the elimination of the mind and nerve altering drugs. Dr. is the mother of a developmentally delayed son, and she had devoted the years 1992 to 1996 working full time with her son in overcoming the problems of such children.She then became the Medical Director at IAHP and is now able to bring these sound procedures to many children who are being consigned to perpetual drugging and corresponding delays in their growth and development. The rapid strides made by many of these children was dramatic. Children who could not crawl and walk are being taught to do so. Neurological functioning is sometimes being brought to near normal levels. Of 48 children who were blind 34 or 71% were able to see for the first time. Much child blindness is due to the brain not processing the images appearing on the retina of the eye. Some 89% of children with no hearing were able to hear.The results only keep getting better as skills advance. 82% of children unable to understand are brought up to the level of a 3 year old. 95% o children unable to read, began to read. Of the 88 children on AED’s 47 or 53% were completely and successfully removed from AED’s and detoxified.The remaining 41 are in the process of detoxification. On the results of this exciting detoxification. Dr reported that in a study done from December 1977 to May 1979, of 71 children who were removed from AED’s and detoxified 39 or 55% had NO seizures, 22 or 31% had fewer seizures or a total 86% had positive outcomes. Two(2) of the 71 had the same number of seizures or 3% and 8 of the 71 had increased frequency of seizures or 11% negative response.

When this drug removal or detoxification was done in 1993 with 132 children

- 48% had no seizures

- 34% had fewer seizures

82% had positive outcomes from AED withdrawal

A limited number of copies of the workshop are available from the conference try contacting Toes, who co-ordinated the conference at facescoordinator@... but if you can’t get one contact IAHP directly website www.iahp.org telephone 215-233-2050

mail: 8801 Stenton Avenue, Wyndmoor,PA 19038

Dr. Luciano,MD presented a review of Herbal Therapies for Epilepsy.He noted that 80% of the world uses herbal formulas, but less than 50% of the US consumers use herbs. In much of the world there is no powerful drug industry and people can’t afford the high prices charged. He recommended as reasonable herbal treatments, Valerian Root-410 mg BID(what does BID mean?) see how long its been since I took prescription drugs, Black Cohosh-525 mg BID with meals, Lobelia 275 mg QD with meal(what does QD mean?) and Passion Flower-360 mg BID with meals. He listed herbs that cause seizures as Kava Kava,Marijuana.Skullcap-confusion and convulsions in high doses, Caffeine,Mahuang or Ephedra,Gamolenic Acid- in evening primrose oil and borage oil, Godenseal, Ginseng,Gingko Biloba, Thujone containing herbs such as wormwood and sage. A quick review of Weiner,Phd’s Herbs that Heal indicates that Dr.Luciani may have been too quick to warn about herbs causing seizure’s which may happen in rare instances. Kava Kava is a sedative and has been observed to be an anti-convulsant. In Chinese studies skullcap root extract was shown to have central nervous system depressant activity and is a sedative and is recommended for epilepsy. I don’t have time to go over it all but I think he is being taken in by the FDA campaign to scare people away from using safer more natural herbal preparations. One of his anecdotes, seemed to stoke this fear in patient-consumers.

For more information on herbs he recommended www.herbs.org and the PDR for Herbal Medicine.

Thus ended the first day of this historic conference featuring many of the Complementary and Alternative Therapies for Epilepsy. As I mentioned it had a lot of good insights, but was likely to ignore the benefits of good nutrition and foods high in the B complex vitamins. I therefore decided on Thursday night to print up my post on my experience with B Complex Vitamins and get them out to the conference attendees. It ran to two pages and I did not want to edit out parts, since it might have left out important details and background that others would rely on. The conference registration and breakfast started at 8:30 and the first session was at 9:00am. I took my handout in to be copied an a shop at 28th Street and 5th Avenue at a little after 8am and got over to the conference for the 9am session and would pick up the single sheet, two sided copy a little before lunch. I told the conference co-ordinator about my handout and she asked to see it . She said it would have to be approved by their medical advisor--who happened to be the speaker referring favorably to Barrett’s quackwatch site. Things did not look too good.

The Doctor did not approve it and she said it would have to be approved by the attorneys for NYU Medical Center. Therefore she asked me not to put it out on their table, but I could try to give it out to people requesting it. Which sounded reasonable and also gave me the opportunity to meet many of the attendees. Most seemed to have never heard of alternative therapies for Epilepsy before and seemed very interested. Most asked for my handout and some discussed it with me at length. The only downside, was that I couldn’t spend too much time with any one person. because there were so many other people I wanted to reach. It has been 23 years and I have always wanted to tell other people suffering from epilepsy about my experience. This day finally arrived. One of the participants was so moved by the experience and her similarity to my experience that we both had tears in out eyes. I wanted to hug her, but I felt it might be misinterpreted and hurt the message I was trying to get out. But it definitely got out.

Friday’s session began with a presentation by Dr.Shaobai Wang,MD, L.Ac on Chinese Herbs. Dr. Wang explained Traditional Chinese Medicine(TCM). Chinese Medicine treats the whole person and has different categories for Hot and Cold feelings produced by foods. Hot is yang and cold is yin.Pungent and sweet flavors are yang, sour and salty flavors are yin. Herbs have differing effects. TCM doctors use all of the observations about the patients other feelings, cold or hot and types of other symptoms to pick a correct herbal formula in contradistinction to western medicine, where all patients with the same diagnosis get the same treatment--usually a drug or class of drugs.In Epilepsy there are different types of epilepsy requiring different herbs.

Type A is characterized by dizziness, chest distention, an aura warning prior to seizure may not be present. Sudden falling with loss of consciousness, spasms, salivation or screaming with urinary and fecal incontinence may be observed. Patient has white coating on the tongue with a wiry or stringy pulse. If most of the symptoms are occurring ,this is treated with Dingxianwan. NOTE: Before you go to a TCM doctor DO NOT brush your tongue--the coating is part of the diagnosis.

Type B Epilepsy is characterized by loss of consciousness, salivation, spasms or bellowing. In between episodes patient is moody , upset, restless and sleepless. Has difficulty bringing up and expelling sputum and phlegm associated with dry mouth, constipation and a red tongue with a yellow greasy coating. Pulse is wiry, slippery and rapid. This is treated with Longdan Xiegen Tang and Ditan Tang if the first one does not work.

Type C Epilepsy is Long history of Chronic seizures, poor memory, dizziness with lumbago or constipation. Tongue is red without a coating and pulse is rapid.This is treated with Zuogui Wan.

Type D is with a long history of chronic epilepsy, easily tired with low spirits, dizziness, poor appetite, pale face loose stool or nausea and vomiting. Pale tongue, with a thin floating and weak pulse. This is treated with Liujunzi Tang

As you can see there is considerable overlap in types and variations in cases will lead to different remedies.

Dr Wang’s office is located at 200 West 57th Street suite 1010 in Manhattan.

His telephone is 212-262-9898

Dr Mark Rudderham, ND delivered a lecture on Nutrition which dealt with a few vaguely identified stimulants to avoid that he identified in very technical terms, so as not to in any way cause patients to decrease their consumption of foods implicated in increased seizure activity. He identified Excitatory Neurotoxins as Glutamates, Glycine and Aspartate. I assume he was referring to Mono Sodium Glutamate, the frequent flavor enhancer. Aspartate I assume was meant to refer to Aspartame also known as Nutra Sweet. The artificial sweetener that has been implicated in causing epileptic seizures in airline pilots causing some to lose their licenses. By the way this product was brought to the American Public in 1981 by the company then headed by Secretary of Defense Rumsfeld. He had previously been Secretary of Defense in the Ford administration and was quite influential in having Arthur Hull , the FDA commissioner override the report of the FDA advisory committee recommending AGAINST approval.

He mentioned that Glycine an excitatory stimulant was effective in enhancing anti-convulsant activity of Phenytoin(Dilantin) and GABA sounds strange but maybe thats why dilantin doesn’t work that well. He mentioned Taurine as being helpful, B-6 dependent epilepsy which we have heard of frequently. He made a hasty retreat without any questions. Not one word was said about eating healthy FOODS high in B Complex vitamins. I now knew my handout was going to be even more important than ever.

Dr. Weidong Lu,MB.L.Ac presented a talk on accupuncture for epilepsy. In the Jiagsu Journal of Traditional Chinese Medicine, 1999;20(11);37 there is a report of a randomized controlled study in which 30 patients were each receiving accupuncture and phenytoin (Dilantin) and were withdrawn from phenytoin Vs recieving phenytoin. The Accupuncture group received acupuncture once a day a 1 course, and then 2 to 3 courses of acupuncture with 3-5 day breaks on treatment and Gradual Withdrawal of Phenytoin. The Phenytoin group received .1g. 4 times a day.

After 6 months 22 members of the acupuncture group or 73.4% had clinically controlled seizures whereas the phenytoin group had 14 or 46.7% clinically controlled. another 7 or 23.3% were of the acupuncture group showed improvement in seizure control and 14 or 46.7% of the phenytoin group showed improved control. Only 1 or 3.3% of the accupuncture group showed no change and 2 or 6.6% of the phenytoin group showed no change. Some other studies have been done in countries, such as Sweden, where they did not have trained acupuncturists and the acupuncture treatment was not found to be of statistically significant benefit.

Acupuncture can be used in conjunction with AED therapy. You will need 20 to 40 treatments and don’t withdraw drugs until control is achieved.

Dr.Ginger Nash,ND a naturopath from Oregon presented a talk on cranio sacral therapy for epilepsy.Cranio Sacral therapy is a very mild pressure applied to the skeletal structure of the head and back. It can be used in patients of all ages even children in infancy. The College of Cranio Sacral Therapy is at 99 ’s Mews, Primrose Hill, London ,NW1 8XE tel. 020-7483-0120

website: www.ccst.co.uk Email: info@...

other referrals in the US can be obtained from www.craniosacral.co.uk/usa.htm

and www.craniosacraltherapy.org/members.htm

The Cranial Academy in Indianapolis,Indiana has tel.317-879-0713

SURSI in Prarie Village, Kansas tel. 913-649-3475

Some Osteopaths, Chiropractors and Naturopathic Doctors may also use Cranio Sacral Therapy

Since I had to leave to pick up my B Complex Vitamin handout, I missed the talks on The Ketogenic Diet by Dr. Freeman,MD and the Self Generation of Seizures by Fenwick,MD.

I cannot imagine why anyone would want to intentionally bring on a seizure except to infer that if you know what can bring it seizures on, by implication you know what to avoid. Why anyone would have to bring on seizure intentionally to find this out is beyond me.From Dr Fenwick’s handout it appears he was discussing the avoidance of situations that are likely to bring on seizures.

The biggest trigger for seizures was found to be Tension-69% of seizures attributable and Depression-67%, Tiredness-49%, Anger-45%, excitement-41%,boredom-25%,menstruation-19%,Hunger-16%,sex-10%,Happimess-7%

I brought the handout just before the lunch break, but waited while the co-ordinator tried to show it to their medical advisor.Since most of the people were eating anyway, the delay wasn’t that bad. As I stated earlier, the handout was not approved to be left out on the tables, but I could try to spesak to people on an individual basis, which I did. starting with the latter part of the lunch break and at the subsequent breaks. Most of the people were quite receptive. For most of the people, it was their first exposure to the possibility that there were alternatives to AED’s they were taking. I tried to keep circulating and couldn’t spend too much time with any one person. But it had my phone and Email address for anyone who wanted to follow up. It was a wonderful feeling to finally be able to communicate this information to other people who might be able to use it.

After Lunch Dr. Reiter,MD of the s/Reiter Epilepsy Treatment Program presented a talk on A Neurobehavioral Approach: Cognitive Restructuring,Breathing and Visual Imagery. He went over the potential of patients to alter their bodies processing of thoughts and gaining control over the cascade of events that can eventually precipitate a seizure.The inputs that the individual controls range from the depth and pace of breathing or sometimes called the rate of breathing and how it can be consciously varied. Patients can also attempt to regulate or facilitate communication in the mind. Dr.Donna s,PhD presented an inspiring talk on the way patients can get control of their brain’s functioning and regulate the permissible range of excitation and exert control over seizure activity. She had a workbook for patients and said that it was important to consult with her to make sure the patient is using it correctly. She had personally controlled her recurrent seizures without medication and had frequently had success with others in gaining control and eliminating use of anti-convulsant drugs. Her email: djandrews@... tel. 707-578-8985

s/Reiter Epilepsy Treatment Program, 1103 Sonoma Avenue, Santa ,CA 95405 .

Dr, Schachter,MD and Coss,MA,ATR-BC, presented a talk on the use of Art Therapy. This was basically a discussion of the means of coping with the expriences,emotions and feelings surrounding the seizures and living with them. I felt it was a talk on how to live with hopelessness and making realistic positive adjustments to a difficult situation. If anything I thought it made patients feel more dependent on a lifetime of prescription drugs without ever thinking of anything better. Ms.Concetta Tomaino,DA.MT-BC presented a talk on Music Therapy. There are some types of music that lower tension and are relaxing and there are other types of music that can sometimes promote seizures. If you want to find out more look them up at:

www.cbmt.org OR www.musictherapy.org OR www.musicaspower.org

Professor Brown, a neuropsychiatrist and epileptologist(I learned a new word), spoke on Pet Therapy for Epilepsy. Pets decrease stress and stress is one of the triggers for seizures. Children with disabilities and a dog get more social acknowledgment than without a dog. The Dog is a catalyst for greater social interaction with others. Some Trained dogs have been able to warn of oncoming seizures.Dogs must be trained to respond to seizures. The untrained dog can possibly be frightened and become more dangerous than helpful. The dog may attack the patient having a seizure and passersby.Frequency of seizures has been shown to decrease with a trained "seizure alert dog" A dog tends to build levels of confidence and control. The patient is put at ease and is not stressed and can sometimes feel more able to be in control of his situation.

On Saturday Dr. Pacia,MD presented a talk on the benefits of Exercise and Yoga in Epilepsy Control.Moderate exercise is beneficial. I might point out that too much intense exercise, especially if causing hyperventilation can cause a seizure as I can attest. When running at top speed past the point where I can adequately handle and control my heavy breathing, I have had seizures. But with proper biofeedback monitoring--through monitoring my rate of speed and adding to prior mile splits, I can test if my mind is clear enough to perform arithhmetic manipulative processes in order to test if I have mental control. Yoga has am emphasis on deep breathing and measured relaxation and is beneficial in gaining control over important functions.

Dr.Tim Betts, FRCPsych presented some interesting experiences with aromatherapy and hypnosis. The sense of smell is part of the limbic system, which is also the site of epileptic sezure activity. Those who have an odor in the aura before a seizure are even more responsive to aromatherapy. In treatment, the patient picks the oil which is to be used. In a trial of 10 patients, Aromatherapy it was found that average mean frequency of seizures decreased from an average of 7 seizures the month before therapy, down to 2 per month during the month of treatment and rose again to 3 the month after therapy and rose to 6 a month after six months after therapy. The oils used and # of patients in parenthesis(n)were, yang ylang (6), lavender (1), rosemary (1)* , rose geranium (1). The * with rosemary resulted in INCREASED seizure activity.

Hypnosis is a level of concentration in which there is a dissociation so that the person alter his level of arousal and change mental states. It should only be used on persons with epilepsy if the practitioner is an expert. And you should avoid sudden awakening from hypnotic trance which might lead to a seizure. In a trial of 100 patients followed for one year after treatment with massage with essential oils and hypnosis, results Follow:

100 Patients followed for 1Year after treatment with Hypnosis and/or Massage with

Essential Oils

Hypnosis Only Massage Only Hypnosis+Massage

N=25 N= 46 N=29

Seizure Free 12% 35% 38%

At least 50% Reduction 36% 30% 31%

in Seizures

No or Transient Effect 40% 31% 25%

Increase in Seizures 4% 4% 6%

Number of patients and the essential oils chosen were as follows:

Ylang Ylang 52 geranium 2

Jasmine 30 lemon grass 2

lavender 5 melissa 1

bergamot 4 chamomile 4

Some people carried the oil to ward off seizures and then automatically imagined the smell without having to carry it. Aromatherapy was best for seizures related to long auras, triggers, sleep related seizures, stress related seizures. Aromatherapy is useful in drug withdrawal. Avoid Camphor containing oils such as rosemary- which promote seizures.

If you pick an oil- DO NOT PICK ONE THAT REMINDS YOU OF SEIZURE.

Referrals: Finger Lakes School of Massage, 1251 Trumansbury Road,Ithaca,NY 14850

Prof. Trimble, presented a talk on Transcranial Magnetic Stimulation. It seemed rather invasive to me using magnetic coils. It is touted as non invasive, but if it has headaches as a side effect, it sounds too close to Electro Convulsive Therapy. It is said to be felt like a tweak with the fingernail but if it induces electrical current in the brain it has a dangerous potential. There have been reports of elevated seizures in animals in study. I think its too experimental to trust.

The conference was a tremendous success, even though my personal therapy was not featured. The exposure to alternative treatments and my handout, for those it reached could make a significant difference in many lives.

Arnold Gore

Consumers Health Freedom Coalition

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