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Disclaimer: This Newsletter is not intended to diagnose, prescribe or to replace the services of your physician. It is solely for reading purposes.
06 October 2001 WINSTON HILLS PUBLIC SCHOOL
Welcomes Dr. M Dexter
DATES!!!
03rd. Nov. Skull Base Institute presents - EVD
01st. Dec. Ms.A. Johnson -- Vitamin Bs &B12
Jan.2002 NO MEETING!!
02nd.Feb 2002 First meeting for the year 2002.
02nd. Mar.2002 Dr.B.Kwok - "Surgical Options"
06th. Apr.2002 Mr.S.Lalani. Chiropractor.
Contents
ONE YEAR OLD
1st September 2001
Assembly Hall
Winston Hills Public School
Present:
I Wood. M.Wilson K.Koh M.Govendah B.Slade P.Govendah B.OBrien S.Bruce L.Porter D.Wilson A.Porter V.Eurrel J.McIntyre C.McIntyre J.Birett M.Bowd M.McIntyre H.Birett F.Gordon M.Lyons J.Craggs C.Holland B.Clark K.Stentiford B.Stentiford L.Brooker A.Priest J.Whitehouse J. Palmer Joy.Palmer R.Whitehouse J.Granter C.Granter V.Slade S.Briggs E.Koh K.Dunn G.Dunn F.Rodovau F.Martin N.Martin J.McMartin M.Hammond S.Riley
Apologies
T & B Coull A.Thomas J.Weaver J.Douglas G.Fletcher M.McKenzie
We marked the day with songs and activities that allowed members to get to know each other better. It was a fun day with opportunities aplenty to chat.
I wish to thank Beryl Slade for providing us with the music. Thank you also to Margaret Lyons for organising the afternoon’s programme and to Gordon Franklin our MC for the day.
A big thank you to everyone for making it such a successful afternoon, and all the food you brought.
Thanks also to the Wilsons for the "birthday "cake - it was a scrumptious mud cake ( and Jean -I kept my promise . Had to do 6 laps around the oval the next day -2 laps for every slice of wickedness... and I HATE jogging!)
The Birth Of The Sydney Support Group. Like many of us, I was busy living my own life. I left the matter of my mother’s health to her doctors. When she described her pain - it was "hmm. ok you have this electric shock like pain zapping through, " and left it at that. After all, to me, "pain is wearing a size 8 soccer boot on my shin, or someone’s kneecap on my nose. It’s only pain - it will go away".. until.....one dayI watched my mother winced in pain while tears rolled down her cheeks.( She would even wake up in the middle of the night screaming with pain.) I watched, as she bravely tried to cope. I wondered to myself "how bad does this get?" I had no idea what she was suffering from and neither did she.
Her pain worsened, and for months she survived on semi fluids (- 2 minutes porridge took 20 minutes to cook - it had to be completely disintegrated.- so that it can be drank through a straw.) Eating would trigger the attacks. She was reluctant to go out. Each day it was as if she sat in anticipation of the pain. Others began to term it "psychological"
I eventually learned the name of the disorder and delved into the net, and began learning about Trigeminal Neuralgia. Although by then, my mother was pain free, I could not shelf the information, and pretended no one else needed it. For it was obvious many were suffering like my mother, helplessly, in isolation and in ignorance. " one minute I can be in dire pain and then next minute I am fine, you must think I am mad" or "whining again."
So in June 2000, I registered with the TN Association. and began the slow road to contacting sufferers. I was passionate about sharing the information. With knowledge one learns to cope, and it was just as important TN sufferers realised that there are others suffering the same.
On 2nd September 2000 we held our first Sydney Support Group meeting. There were then 14 of us - 11 of whom were patients. Today, 12 months later, we have 110 patients on our mailing list. 45 people attended our 1st Anniversary. It was a record attendance. It showed me how much you valued the occasion and I draw tremendous encouragement and strength from it.
Goals Achieved:
Goals to work towards:
The aim of the support group: is to provide the information, the support and the encouragement to all patients, their families and friends.
Here are some members who have attained pain free through different method of treatment: I would like to share their stories, and perhaps offer you some hope. Bear in mind - what works for one may not work for another..
Microvascular Decompression
Helen JuddWarners Bay.
" My first bout of TN was experienced as I applied moisturiser to my face. It was fierce and unending, climaxing with the pain in my right eye. A dotor was called and I was diagnosed as perhaps having sinus infection. After having my sinuses washed out by an Ear -Nose -Throat Specialist, then a CT scan, I was advised to see a neurologist. Eating and speaking etc, were triggering many attacks.
I was diagnosed as having TN when my husband took me to the Emergency Ward, and Tegretol was prescribed .This kept the pain at bay for 6 weeks. I tried acupuncture which seem to aggravate my problem greatly.
Again my husband took me to the emergency dept. where my history was known. Dilantin was added to my Tegretol. TN pain broke through within 2 months. I was counselled on surgery which I decided to have, as eating etc was becoming impossible, even walking was setting off the attacks..
A small blood vessel was found and a small piece of dacron was placed between the nerve and the blood vessel. The procedure was called ‘the Janetta Procedure"
I awoke from surgery with the right side of my head numb, but no pain. This slowly receded until below my eye This numbness receded slowly over the years. Now 12 years later, I have a small degree of numbness around the mouth area.
I did have some forgetfulness after the surgery mainly short term eg:" where did I leave the car?" - left iron and gas stove on " This righted itself within 6 months.
This is my TN history - so far so good.
Other members who recently had MVD with success:-
Fred Richards, Grodon Franklin, Don Wengglar, Marie Hammond - talk to them- I am sure they too would be willing to share their experience.
Vitamin B 12
Val Eurell
Kenhurst.
"My first experience with TN was March 1996. The pain was on the right side of my face and my GP put me on Tegretol. The pain lasted about 6 months.
The next year, the month of March the pain started again. The pain was not too bad, and Tegretol was taken again which kept it under control. It lasted about 3 months. I had 2 years free of TN and thought that was the end of TN for me. But last year, it returned with a vengeance. Pain was very severe, stopping me from talking and eating for 3 weeks. The pain was lodged in between upper and lower jaw bones. The doctor combined Tegretol and Neurontin. These 2 drugs together made life very difficult and put me in fairy land" This time the pain lasted 8 months.
I read about a patient having vitamin B12 injections in our May Newsletter, so I decided to try them. I got some Vitamin B12 tablets from the health store and have been taking 2 tablets a day, since May. I have been free of pain and off all medication. It has been wonderful to be back to normal again and hope this continues.
M.Wilson - using sublingual B12.
B. Clark - taking Vit.B12 tablets.
Chiropractic Manipulation
Joyce PalmerBaulkham Hills
" My head started about 15 years ago, they were no ordinary headaches, but intense pain on the left side from the eye to the jaw. they were triggered by cold and draughts. Air conditioning was a particular problem esp.. when it was difficult to avoid situation such as in an aircraft or restaurants.
On explaining the symptoms to my GP he diagnosed the problem as TN. I had never heard of the condition, but my doctor’s father had been a sufferer, so he was aware of the various treatments at that time.
Tegretol was prescribed and I stayed on this medication for some time, putting up with the "zombie " feeling as being the lesser of the 2 evils.
I was then referred to a neurologist who changed the medication to Indocid. Some years later I saw a Gastroenterologist, who advised stopping the use of this drug, so it was back to Tegretol. After discussing the unpleasant side effects with my doctor I stopped the medication last year.
By this time I had taken to keeping my head covered if I felt that the situation was likely to cause a problem. This certainly helps.
I joined the TN support group and in March was impressed by the guest speaker, a chiropractor and have since undergone a series course of treatment. I have had no major attacks since starting the treatment.
Capsaicin Cream
Andree ChenevierQueensland.
I had an MVD 17 years ago and had been pain free for that time - so I had a very good out come with the operation. However early last year, I started feeling twinges along my jaw line, this soon developed into shock like trigger spots all over the right side of my face. I was terrified that it would soon develop into full blown attacks. I began looking for anything that would stop this pain from happening again.
I listened to treatment options available from neurosurgeons. I was desperate for something which was permanent and would not have harmful side effects.
I learned from Irene and the support group a few positive reports about this cream "Zostrix" ( Capsaicin Cream). I began using it 4 X a day. There was a slight burning sensation on the skin when I first started applying it. But this sensation only lasted for a few minutes.
It was extremely difficult to apply as one has to apply them on the trigger spots. I was never sure which spots would trigger. So it was with great trepidation I made myself get it on 4X a day.! I have to tell you that it was 7 long weeks before I knew it was working. - the trigger spots were gone. I could spread the cream and RUB it into my face.
This happened just before Christmas last year and has remained pain free since. I still apply the cream 4 X a day. I think I can apply it less often now, but I am not confident enough yet. I can only wish you all the same success I have had. I am sure you will with persistence.
There are many others in the group who are using Capsaicin cream, achieving pain relief and cutting back on their drugs.
Topical Clonidine - with Capsaicin
Patient : My MumFebruary 2001 - 1st return of pain, pain level mid range, started on Neurontin 3x300mg per day - result: Ho hum!
March - started on Capsaicin cream, as well as increased neurontin to 4x 300 mg p/d result - Ho hum!
By May - her pain level was lowered to "pin prick" ( I like to think the capsaicin is responsible for that ) but the spasms / or nerve firing increased.. Have a few days of remission in between attacks, but each attack seem to last longer in time. However, it was encouraging to note that the pain level was always low, It was the fear of how bad the pain could get that stopped her in her tracks..
On 29th Aug 01 - a 2 hourly topical clonidine (catapres) 0.015mg/ml , ( 8 applications p/day was the maximum) . supported with 4 applications p/day -(max) of capsaicin cream (zostrix HP) .
After 1 week of topical clonidine - her "electric shock like" attacks have completely stopped. Prior to this, her attacks were quite frequent and lasted between half an hour to an hour. She now can press and poke and rub at the trigger points and NO ZAPS!! She started reducing her Neurontin. by 300mg per week.
Currently - she is on 1X 300mg Neurontin - 2 hourly topical Clonidine with 4 hourly Capsaicin cream = NO PAIN , NO SPASM, NO SIDE EFFECTS!!
Things we need to consider :
Mum has poor memory - ( due mainly to her Neurontin I think) so applying the medication 2 hourly, was a TASK! She tends to forget. When she eventually could remember to apply them consistently every 2 hourly, the result is good. - she has not been bothered by the spasm.
She felt that 1 ml is too much to apply. - she has only 2 trigger spots. - on the left top lip and the crook of her nose. ( too much cream on too little an area.)
It would be ideal to have the Capsaicin compounded with the clonidine - thence patient needs only one cream.
I wish to thank Bob Harrison for making this possible. He listened, and was willing to work and support me in " compounding an alternative for pain management." ( He had to import the raw materials.)
I also wish to express my thanks to my mum’s Neurologist - for giving this a go.
The "beauty of this" is the vehicle of transport can carry up to 4 chemicals. IF pain breaks through - we can look at adding another mechanism of action - with no side effects!!
Dr.Casey ( transconjuctival with topical / IV lidocaine .) "Understanding I'm not a compounding pharmacist, I think the consistency of drug delivery is generally good with this approach. "The rub comes from the ability of the drug to create a depot within the skin and readily penetrate through all the layers of the skin."
" have been using this ( topical clonidine) ~for six months in all types of late pain with fair to middling results but most reported some level of relief." Casey
1: Pain 1995 Mar;60(3):267-74
Transdermal clonidine compared to placebo in painful diabetic neuropathy using a
two-stage 'enriched enrollment' design.
Byas-Smith MG, Max MB, Muir J, Kingman A.
Neurobiology and Anesthesiology Branch, National Institutes of Health, Bethesda,
MD 20892, USA.
" A post-hoc analysis of many variables suggested that patients who described their pain as sharp and shooting may have a greater likelihood of responding to clonidine
Osteopathic Treatment
April Ford
Mt.Colah.
In 1995 I developed severe pain in my right temporal area of my head. I saw my GP who diagnosed TN.
Panadine Forte, Digesic and Tegretol, only offered slightly relief for the pain.
My daughter at that time was seeing an Osteopath for treatment and on a visit there I asked if he could help. He wasn’t sure but decided he would try.
After the 1st treatment there was great improvement. The pain returned after the 2nd visit. After the 3rd treatment, - I no longer experience the pain.
Magnets Therapy
Margaret Bowd
Windsor.
Suffer from Neuroma in my left foot., Occipital Neuralgia and Trigeminal Neuralgia in my V2 and V3. Had medication such as Tegretol, antidepressants to help control the pain.
An injection of corticosterone in the back of the head for the occipital neuralgia which stopped the pain immediately.
I heard about magnets therapy and decided to try them. I put a pair of magnets in the in soles of my shoes and left the pain eased. The next day there was no pain. in my foot. I wear them everyday now
I now have magnets in the pillows, the overlay, and I wear a neck piece. My whole world has changed. I sleep with no pain nor pain killers.
Margaret is willing to share her magnets experience with anyone interested. See me for her contact number.
TN patients in America have also reported such success. Look out for the next TNALERT - It will carry news on Alternative treatment.
There also other methods of achieving pain relief.
RadioFrequencyLesioning ,
Glycerol Injection
Balloon Compression
‘Linac’ Sterotactic Radiosurgery, Acupuncture, Lazer Acupuncture,
Magnetic Field Therapy Author/s: Richard RobinsonDefinition
Magnetic field therapy is the use of magnets and electrical devices to treat and diagnose many medical conditions, including cancer, rheumatoid disease, stress-related illness, and pain.
Purpose
Magnetic field therapy (MFT) is an alternative treatment for a wide variety of symptoms, most notably for pain. While the use of magnets for healing has a centuries-old history, only recently have some controlled studies been done which demonstrate the effectiveness of magnetic field therapy.
The human body is surrounded by magnetic fields present on the earth, and the body is full of magnetic materials. Magnetic fields penetrate the body easily, because it is 70% water and offers no resistance. A strong magnet held on one side of the hand can easily affect the needle on a compass on the other side of the same hand. Measurements show that tissue that has been exposed to a magnet will keep enhanced magnetic signals for sometime afterwards. Different types of magnets can produce these effects, including flat magnetic pads and electromagnets, such as magnetic resonance imaging (MRI) machines and nerve conduction testing devices.
The mechanism of action of MFT is not understood. Possible explanations of its beneficial effect on the body include its ability to increase blood flow, change the alignment of bodily electromagnetic fields, and interact with acupuncture points and meridians on the body. Certainly the placebo effect, in which a treatment is helpful because the patient thinks it is, may be acting in some cases. However, MFT has also been used successfully in treating pain in horses, where the placebo effect presumably is not a factor.
Claims of successful treatment have been made for many more conditions, including cancer, arthritis, headache, sleep disorders, neurological disease, stress-related conditions, and osteoporosis.
Some double-blind scientific studies have shown varying results in the use of MFT to reduce pain associated with hip replacement and heel pain. Another small investigation demonstrated improvement in the healing of leg ulcers.
Precautions
MFT is not approved by the Food and Drug Administration as a treatment for any medical condition, and magnetic therapy products are not registered medical devices. Those with cardiac pacemakers or other implanted devices should not use magnets. Marketers of MFT devices warn against use during pregnancy or on open wounds, and state that magnets may cause pain, toxin release, medication interactions, digestive difficulties, seizures, insomnia, hyperactivity, and tumor growth.
Description
Magnetic therapy can be applied in many ways, from the use of small, simple magnets to a large machine. Small magnets, either embedded in flexible plastic or wrapped in cloth, are strapped over the area to be treated, and left in place for variable lengths of time. They can also be carried in a person's pocket or placed in a shoe. Magnetic blankets and mattress pads also are available. Large machines that can generate high levels of field strength are used for treating fractures that are slow to heal, and in pseudoarthritis, a joint disease caused by nerve breakdown.
Risks
In the limited studies of MFT, no adverse effects have been reported. Since the body's electromagnetic fields are easily altered, magnetic therapy should be practiced under the supervision of an experienced professional.
Normal results
MFT seems to be effective, according to the literature, for relief of some types of pain and in healing leg ulcers. Further study is needed to confirm its effectiveness in treating other conditions.
The Consumer Guide to Vitamin B-12 Vitamin B12 is a water-soluble B complex vitamin obtained primarily from animal sources. It is also known as cobalamin, because it is a cobalt-containing compound. The body needs only tiny amounts of B12 and stores it better than the other B vitamins, but lack of B12 in the diet or an inability to absorb it can eventually cause nervous system problems, pernicious anemia, and other ailments.Why is it essential? Vitamin B12 aids in energy production from fats and carbohydrates and in the production of amino acid. Nerves need B12 to maintain healthy myelin sheaths. The vitamin is also involved in production of the mood-affecting substance S-adenosyl methionine. Vitamin B12 works with folic acid to control blood levels of the amino acid homocysteine. It aids in the formation of red blood cells, the nucleic acids DNA and RNA, and other vitamins. Pregnant women and children need adequate B12 for normal growth and development. B12 assists immune function and melatonin secretion.
Benefits and uses: An excess of homocysteine (which B12 can help prevent) dramatically increases the risk of heart disease and perhaps osteoporosis. Many people find that B12 increases their bodily energy and prevents fatigue. Inadequate body levels have been tied to hearing problems—one study of B12 levels in soldiers, 50 percent of whom suffered from either tinnitus or hearing loss, found that nearly half of the soldiers with hearing problems were deficient in B12, fewer than one in five of the soldiers with normal hearing had deficiencies, and tinnitus was most severe among those soldiers with the lowest B12 levels.
Vitamin B12 may reduce the rate of various emotional and nervous system disorders, including depression, age-related mental impairment, and multiple sclerosis. Vitamin B12 may also help prevent or treat asthma, bursitis, diabetes, hepatitis, male infertility, retinopathy, shingles, and bursitis.
Daily requirement: The NRC recently increased slightly the recommended dietary intake for B12. The adult RDI is 2.4 to 2.8 mcg.
Deficiency risk factors: After several years, vegans (vegetarians who also avoid dairy and eggs) face some risk of long-term deficiency. Many people who suffer from a vitamin B12 deficiency have a malabsorption condition, often related to lack of a stomach enzyme (intrinsic factor) needed for the small intestines to absorb B12. Malabsorption is very common among the elderly, mainly due to an autoimmune-induced atrophy of the mucous membrane that lines the stomach.
People with diabetes or thyroid disorders are also at increased risk for a B12 deficiency. Stress, alcoholism, and overuse of antacids can increase the need for B12. Deficiencies in B12 may cause neurological problems, numbness in the hands and feet, diarrhoea, confusion, fatigue, depression, and memory loss.
Optimal intake: An optimal daily supplement level of B12 is 50 to 150 mcg. Larger doses (such as 1,000 to 2,000 mcg per day) are used to reverse pernicious anemia.
Food sources: Vitamin B12 occurs principally in animal products, as it is stored in tissues after being produced by the action of certain bacteria in the intestines. Rich sources include organ meats, beef, lamb, pork, poultry, milk, eggs, cheese, and seafoods such as sardines, salmon, oysters, and tuna. A few plant sources exist, such as tempeh, sea vegetables, brewer’s yeast, spirulina, and mushrooms, but these are less reliable compared to animal sources and may provide a form of the vitamin that is not as useful as animal-derived B12. Some breakfast cereals are fortified with B12.
Recent findings: Studies have continued to support the connection between B12 (and other B vitamins), homocysteine levels in the blood, and heart disease. A recent study, however, found that homocysteine levels may also be a risk factor for chromosomal damage.1 Researchers have also determined that B12 supplementation is an affordable and nontoxic strategy for preventing irreversible neurological damage among the elderly if started early.2 A two-year study found that people with vitiligo, a disorder in which patches of skin lose their color, could induce repigmentation by taking vitamins B12 and folic acid in combination with exposure to the sun.3
Safety: It is nontoxic up to at least 1,000 mcg per day, much beyond the optimal level. Vitamin B12 supplements are not associated with side effects. If a person is deficient in vitamin B12 and takes 1,000 mcg of folic acid per day or more, the folic acid can improve anemia caused by the B12 deficiency, but not affect neurological symptoms of a B12 deficiency.
Vitamin B12 deficiencies often occur without anemia (even in people who don’t take folic acid supplements). Some doctors do not know that the absence of anemia does not rule out a B12 deficiency. If this confusion delays diagnosis of a vitamin B12 deficiency, the patient could be permanently injured. This problem is rare, and should not happen with doctors knowledgeable in this area using correct testing procedures. Anyone supplementing with more than 1,000 mcg per day of folic acid should seek evaluation by a nutrition-savvy medical practitioner.
Types of products: As an individual supplement B12 comes in tablets, capsules, liquids, and lozenges; some forms are sublingual. Potency ranges from 100 to 10,000 mcg. Injectable B12 offers no advantages over oral supplements. B12 is sometimes combined with folic acid. It is included in most B complex and multi-nutrient formulas. The most common form in supplements is cyanocobalamin; hydroxycobalamin and methylcobalamin are also found.
Excerpted from : MotherNature.com
General Matters
Dr. Kim Burchiel has expressed his regrets on cancelling his trip to Sydney following the horrific events in America. He has indicated his commitment to meet with us and hopes to be able to do that soon as possible.
Dr.C.West did an article on TN in the Sun Herald "TEMPO". She recommemded the TNA support group as the best resources of information and gave (with my permission) my number for details. YES!!! I have had a very busy week. The evidence is in the amount spent on postage and on extra photo copying for this month.
Margaret Lyons has asked to be relieved from the steering committee. She feels she needs a break. Regretfully, we accept her decision and wish her all the best.
Coming soon to a theatre near you! EVD (EndoscopicVascular Decompression) - an evolution of MVD.
Raffles raised $47. Thank you Henry and Jeanette. Well done.
Your Support Group Leader : Irene Wood 02 45 796 226
Steering Committee : Margaret Lyons, Frank & Norma Martin, Gordon Franklin, Margaret & Doug Wilson. and Kylie McIntyre.
Disclaimer: This Newsletter is not intended to diagnose, prescribe or to replace the services of your physician. It is solely for reading purposes.