Download TNA 2007 Program Book - TNA The Facial Pain Association

Trigeminal Neuralgia Association
A u s t r a l i a I n co r p o r a t e d .
ABN 33914644101
Support Groups – Adelaide, Brisbane, Canberra, Coffs Harbour, Gold Coast, Melbourne,
Newcastle, Sunshine Coast, Sydney, Sydney CBD.
August 2007
At our First National Conference in 2005, Professor Joanna Zakrzewska conducted a survey on
Profile and expectations of sufferers attending the Australian Trigeminal Neuralgia Association patient
led conference. Recently, whilst preparing scientific posters for our up coming conference and I decided
to appraise the results of that survey.
The study was designed to characterise the types of individuals attending such a conference, as well as
evaluate the success of the conference in meeting patient needs.
Included for a comparison is the 5th USA TNA Conference in 2004
TOTAL participants USA = 405
Australia = 82
Participants
USA
Australia
Patients
130
36
Support Group Leaders/
60 (55 patients)
Included as Patients / TNA Staff
Telephone Contacts
Health Care workers
71
14
Supporters/Partners
120
25
Exhibitors
12
3
TNA Staff and others
12
4
Questionnaire One Taken 144. Replied 110 (76%)
36. Replied 34 (94%)
Questionnaire Two Taken
74. ( 67%)
33. (91%)
Discussion
• Being the first national conference it would the first time patients had the opportunity to hear from
various TN experts.
• most commented on the opportunity to talk to both other patients and to healthcare professionals
• most were rather sad that the conference had to end
• the early start did not receive much approval amongst the older folks.
• the most highly rated talk was the MVD presentation by Dr. Mark Dexter
Conclusions
most of the patients who came to the conference were still suffering pain and were seeking answers.
The conference offered Hope.
Rated conference as being a valuable experience, particularly in terms of meeting others with TN
and being able to discuss their facial pain with medical and dental experts in this field.
For more details – see poster at the conference. ☺
Correction: July edition: Marina Holt : Topical and Transdermal Medication and how it works.
Product she mentioned was Lipoderm and not liposome.
My apology.
Irene
1
Learning to "Live With" Chronic Pain: Lessons From Mrs. Tandy
Paul Arnstein, PhD, APRN, BC :Topics in Advanced Practice Nursing eJournal. 2007;7(1) ©2007
Medscape : Posted 06/26/2007
Abstract
Advanced practice nurses are in a position to provide optimal treatment for the growing cohort of
patients with chronic pain. The case study of Mrs. Tandy provides a poignant and subtle review of
guiding principles likely to result in treatment success. The process of assessment and treatment
planning reveals the importance of psychosocial factors that are often overlooked. Strategies for taking a
stepwise approach to the medical and nondrug management of chronic pain are detailed and provide
the foundation for the education and counseling interventions by a nurse practitioner that yielded
improved functioning and enhanced quality of life. The power of providing encouragement, teaching
self-management skills, sharing vicarious experiences, and using persuasion is evident.
Introduction
The Centers for Disease Control and Prevention (CDC) released a report in November 2006 that was
based on their findings from a national health survey. According to the report, 1 in 4 American adults
experienced pain for at least a full day during the past month, and 1 in 10 adults have pain that has
persisted for over a year. Among adults over age 65, an astonishing 60% of Americans have pain that
has persisted for over a year. Following nerve damage from illness or injury, chronic neuropathic pain is
particularly difficult to diagnose and treat. For the person living with chronic pain, daily routines,
participation in enjoyable and meaningful activities, and relationships are changed or lost. As severe pain
persists, it erodes physical, emotional, and spiritual health, as well as the ability to work and maintain
close relationships.
Among the most common forms of chronic neuropathic pain is peripheral diabetic neuropathy, which
affects both the physical and mental health, as well as the quality of life, of at least 3 million
Americans.[5] Successful treatment plans require more than just pharmacotherapy. The medical
management of chronically painful diabetic neuropathy can make monitoring and adhering to complex
regimens (for treatment of both pain and diabetes), while engaging in health-promoting activities, a fulltime endeavor.
I reviewed the research literature, examining the CINAHL (Cumulative Index to Nursing & Allied
Health Literature), Cochrane, and MEDLINE databases in February 2007, which suggested that there
are many treatment approaches available. Too often in practice, however, clinicians are unaware or have
mistaken beliefs about available treatments and may suggest these patients will just have to "learn to live
with the pain."
For 12 years, I have received referrals of patients being sent to a cognitive-behavioral pain treatment
program to help them learn to live with their chronic pain. One of those patients, Mrs. Tandy (a
pseudonym), stood out as facing both the typical struggles as well as individual challenges as she strived
to live fully despite her pain. This manuscript introduces the reader to the principles of assessing and
managing patients with chronic pain secondary to peripheral diabetic neuropathy, relaying Mrs. Tandy's
story, a 5-year therapeutic relationship, to highlight how nursing practice lends itself to:
—
Knowing the patient;— Applying evidence-based approaches; and—Modifying treatments based
on individual responses.
As a caveat, emerging research is changing this area of practice at an extremely fast pace; clinicians are
advised to stay abreast of the latest research and best practices.
Overview of Chronic Pain
In general, chronic pain (lasting more than 6 months) is difficult to treat, with a 30% reduction in pain
intensity considered to be a successful response to treatment. First, clinicians must identify and treat the
underlying cause of pain, then determine whether persistent pain is nociceptive or neuropathic in origin.
In general, chronic neuropathic pain is more likely to be reported as a sharp or burning and superficial
pain, whereas chronic non-neuropathic pain is more likely to be described as deep and aching.Other
common descriptions of neuropathic pain include:
—
Shooting;—
Stabbing;—
Electric shock; or—
Uncomfortable numbness.
Despite the perception that neuropathic pain is refractory to opioids, patients are more likely to respond
to opioid analgesics than any other single agent. In head-to head trials, no subclass of opioids (for
example, long-acting vs short-acting), drug (for example, morphine vs fentanyl), or route of
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administration (for example, oral vs transdermal) has demonstrated superiority for chronic noncancer
pain.
Co-analgesic drugs are typically added to opioids and have analgesic benefits independent of the painrelieving properties of opioids. Tricyclic antidepressants (TCAs) are effective treatments for neuropathic
pain. These agents have a long track record of successful research and clinical use and may be the most
effective agents to use for the treatment of painful diabetic neuropathy. The American Geriatrics
Society warns that because of the side-effect burden of these agents in older persons, the starting dose
should be 10 to 25 milligrams (mg) per day at bedtime.
The effectiveness of several other treatments for diabetic neuropathy has been demonstrated, but some
of these are used "off-label," as the United States Food and Drug Administration has approved only 5
agents for the treatment of neuropathic pain (indicated by an asterisk) :
—
Carbamazepine (Tegretol)*;— Duloxetine (Cymbalta)*;—
Gabapentin (Neurontin)*;—
Lamotrigine (Lamictal);—
Pregabalin (Lyrica)*;— Venlafaxine (Effexor);—
Topical lidocaine 5% patch (Lidoderm)*; and— Tramadol (Ultram).
Duloxetine, although approved for the treatment of painful diabetic neuropathy, has not been published
in head-to-head trials to demonstrate its equality or superiority to TCAs. The adverse effects involving
the gastrointestinal, neuropsychological, and hepatic systems, as well as drug-drug interactions affecting
the cytochrome (CY) P450, 1A2, and 2D6 isoenzymes, suggest that more safety and efficacy studies
need to be published before this drug can be used routinely, especially in older persons.
Initial Assessment, Diagnosis, and Treatment Planning
Mrs. Tandy's History
Mrs. Tandy first presented as a well-dressed, meticulously groomed 76-year-old woman. Her response
to the question, "What brings you here today?" was very telling of her personality.
Well...my feet were burning so badly, I was on my way to the doctor to tell him to cut them off. While
waiting at the elevator I saw a sign for the Pain Medicine Department. I went and yelled at him for not
referring me there years ago.
Her pain was described as a severe burning (10/10 in intensity) in a stocking distribution pattern
bilaterally. A "stocking" or "glove" pattern of pain distribution is typical of peripheral diabetic
neuropathy (present in 20% who have diabetes of ≥ 10 years' duration), which damages the peripheral
ends of small somatosensory fibers. Her pain had been constant for 6 years, gradually worsening over
time. Although it was present around the clock, she was most bothered by the pain at night when it
interfered with the onset and maintenance of sleep. The pain was worsened by: tight-fitting shoes,
standing, or walking for too long. She tried cool soaks, acetaminophen, and ibuprofen, but nothing
seemed to help.
Her doctor once prescribed propoxyphene napsylate with acetaminophen (Darvocet N-100), but it
made her head feel "goofy" so she stopped. Next, she tried acetaminophen with codeine (Tylenol 3);
however, the constipating effects were a problem and she found it never noticeably reduced her pain.
Similarly, lidocaine 5% topical patch was ineffective against her pain. She did not want to take stronger
opioids because of concern about addiction and "what [her] children might think about [her]."
Mrs. Tandy's past medical history was significant for:
—
Diabetes type 2 -- treated with oral medications;— Cataracts; and—Hypertension, controlled by an
angiotensin converting enzyme (ACE)-inhibitor
Her adherence to the diabetic and low-sodium diet was poor, but she was very compliant, if not
regimented, when it came to taking her medications.
Mrs. Tandy was a fiercely independent woman, adamantly denying the need for help with shopping,
laundry, finances, or housework.
She lived alone in a modest apartment on a fixed income (husband's pension). She struggled financially
to balance her need for medicine, food, and heat. Mrs. Tandy described her 2 daughters and 8 lovely
grandchildren, who lived nearby but rarely visited. They had a falling out years earlier when she refused
to place her bed-bound, abusive husband in a nursing home. She found support and companionship at
the local senior center and dance club, and found strength in her faith community.
Mrs. Tandy's Diagnosis
Mrs. Tandy was diagnosed as having painful diabetic neuropathy of her feet. We discussed her
treatment options. She was reassured that surgical amputation or other invasive procedures were not
indicated or appropriate, as they were unlikely to make her pain go away and could potentially create
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new pains and health problems for her. At the very least, she needed to make lifestyle changes, including
diet and exercise for optimal control of her diabetes, which was the underlying cause of her pain.
Mrs. Tandy's Treatment Plan
An integrated approach, using a combination of medications and nondrug interventions provided by a
multidisciplinary team, was likely to be the most effective strategy for managing her chronic pain. In this
case, the team included a:
—
Nurse;— Psychologist;— Physician;—
Nutritionist; and—
Physical therapist.
Mrs. Tandy herself was an important member of the team, as her treatment success was going to
depend to a large extent on her motivation to utilize self-initiated coping skills and adhere to the
established medical regimen.
Patient education measures were complex and would take several visits to provide; education was not
merely a matter of giving Mrs. Tandy a handout, or trying to teach her everything in one session.
Additionally, Mrs. Tandy had biases or misconceptions about the use of strong opioids for severe pain
that needed to be addressed in order to offer her an optimal medication management plan. Developing
a sustained, trusting partnership with the healthcare team was important for Mrs. Tandy to make the
necessary meaningful changes in her self-care practices.
Taking the first step toward change. A first step in planning was to ensure that she had realistic
expectations of her course of treatment and disease trajectory. As was the case for her diabetes, the
treatment of her chronic neuropathic pain required her to take responsibility for changing her diet and
exercise patterns, while fine-tuning her treatment based on the results of self-monitoring activities. Also
like her diabetes, her pain was a condition she would likely have for the rest of her life, with no magic
pill or procedure that could make it completely disappear. A treatment would be deemed successful if it
decreased her pain by a third.
Resistance to opioid use. Strong opioids are often necessary, but when used alone, they are insufficient
to treat pain as severe as Mrs. Tandy was experiencing. Her reluctance to use opioid pain relievers was
addressed. We discussed the monitoring safeguards to detect and treat the emergence of an addiction
disorder, carefully explaining that an addiction was possible, but extremely unlikely in her case. She was
reassured to know that people could be treated with strong opioids without becoming addicts.
Setting goals. In setting preliminary treatment goals, Mrs. Tandy wanted to decrease her pain by at least
30% and be able to increase her activity tolerance from 30 minutes to 45 minutes. To accomplish this,
the plan was to meet weekly for a month to refine her medical management and begin to alleviate her
pain. She was very interested in participating in a 10-session treatment program, led by a nurse
practitioner, that would teach her ways to cope better with her pain after she was stabilized medically.
She enrolled in the program scheduled to begin 3 weeks into her medical management appointments.
Medical Management
The remainder of Mrs. Tandy's history and physical examination revealed no contraindications to a trial
of opioid analgesics with carefully selected adjuvant medications for her neuropathic pain. She was
started on low-dose oxycodone with acetaminophen (Percocet 2.5/325) 1 to 2 tablets every 4 hours as
needed (≤ 8 per day with instructions to avoid other sources of acetaminophen). It was unlikely that she
would experience the bothersome cognitive effects on this drug that she experienced on the Darvocet
because oxycodone produces no norpropoxyphene, the toxic metabolite of propoxyphene that causes
cardiotoxicity and neurotoxicity. She overcame her reluctance to use opioids when she was told that this
medication had the same potency or was only slightly stronger than 2 tablets of her acetaminophen with
codeine, while being much less likely to cause the side effects that could limit its usefulness.
As is standard for all patients in the practice, Mrs. Tandy was instructed on how to keep a pain diary.
She submitted to written questionnaires screening for depression, drug abuse, and physical mental
functioning, and she participated in a urine drug screen. She also signed an opioid agreement with
instructions to return for follow-up in 1 week.
Initial Response
Evaluation of this regimen at 1 week demonstrated that Mrs. Tandy's pain was slightly better (8/10 in
intensity), which the pain diary linked to the timing of the medication administration. There were no
physical or mental side effects reported, with stable vital signs and an absence of aberrant drug
behaviors. The oxycodone dose was titrated (utilizing the 5/325 preparation of Percocet) , a bowel
regimen was added, and adjuvant therapy was considered.
4
Adjuvant therapy. Although tricyclic antidepressants are typically used as first-line treatment for painful
diabetic neuropathy, a trial of gabapentin was used first for Mrs. Tandy because of its greater safety
margin for older people. To minimize the risk of falls due to sedation or dizziness, she was started on
100 mg of gabapentin at bedtime, with instructions to add an afternoon pill in 3 days, then add a
morning pill 3 days later before returning to the clinic the following week.
During the second week, she continued to improve (pain intensity cut to 7/10); however, the
gabapentin trial failed because of intolerable side effects at subtherapeutic doses. She tried taking it
twice a day a couple of times during the week, but each time she became dizzy and frightened of falling.
After a screening electrocardiogram indicated a normal ST segment, a trial of nortriptyline 10 mg at
bedtime was substituted, which also failed due to intolerable dry mouth and dizziness the next day.
A dose of 2 oxycodone/acetaminophen 5/325 mg tablets every 6 hours seemed to work best for her. At
night, however, she was still awakened by her pain. The oxycodone preparation was helping to provide
partial temporary relief, but was too short-acting to allow for sustained sleep.
Other adjuvant medications for neuropathic pain were tried in order of their anticipated safety and sideeffect profiles. After a couple more failed trials, oxcarbazepine (Trileptal) 150 mg by mouth at bedtime
was added, and the oxycodone/acetaminophen (5/325 mg) regimen was switched to controlled-release
oxycodone (OxyContin) 20 mg twice daily. Oxcarbazepine has support for long-term safety and
tolerability when used for painful diabetic neuropathy, and was acceptable to Mrs. Tandy when titrated
up by 150 mg per day added each week until reaching 600 mg twice a day. Combined with the changed
opioid, this worked to lessen the burning character of her pain and reduced its intensity to 5/10. Mrs.
Tandy also reported that she was sleeping much better and had considerably more daytime alertness.
Concurrently, she had been enrolled in the 10-week Cognitive-Behavioral Pain Management Program
led by a nurse practitioner, and was beginning to notice clinical benefits from that as well.
Lifestyle Modification for Chronic Pain
Through keeping pain and food diaries, Mrs. Tandy was able to see the connection between eating
sugared snacks and an increase in pain. That motivated her to modify her diet. Although there is limited
research on this matter, many patients find that high consumption of sugar, salt, and aspartame is linked
to pain flares:
Mrs. Tandy was instructed that better glycemic control may provide her with long-term benefits of
slowing or even reversing some of the nerve damage that is causing the pain. She was very vocal during
the skills training sessions, venting her frustration and anger with such statements as "This diary-writing
is stupid; my pain is real" and "How do you expect people to pace their activities when you've got to get
things done?"
Using the advantage of the group setting, several patients provided examples from their personal
experiences of how pacing helped reduce their pain and boost productivity and, conversely, how failing
to pace caused overexertion injuries or muscle spasms that increased their pain. Despite her resistance,
Mrs. Tandy diligently kept the pain diary and dutifully completed the assigned readings as well as other
self-exploration tasks. The use of relaxation techniques helped to alleviate her stress and lessened her
frustration and anger levels over the first few weeks.
Coping Skills Training
Among the different coping skills taught, practiced, and mastered in the cognitive-behavioral treatment
program (for example, problem solving and assertiveness), cognitive reframing techniques were most
important in Mrs. Tandy's case. A turning point for her seemed to occur between the fifth and sixth
weeks of the program. At this point, her diary helped her understand her pain and tease out the part of
it that was driven by her emotional distress. She had:
—
Mastered the relaxation and imagery techniques; Cut down on dietary sugars; and Learned to
pace her activities.
She was taking her medications as prescribed and tolerating them well.
However, one day she entered the room where the group was held and slammed her book down on the
table, expressing her disgust with the "stupid homework assignment." The assignment that was so
frustrating to her was to cognitively reframe an upsetting situation. She wanted to know what happens if
the identified "distorted thought" was, in fact, true? With her permission, we explored her circumstance
as a group.
The thought that was so upsetting to her was, "I'll never dance again." She tried to see if this thought fit
the definition of identified patterns of distorted thinking. For example, was she:
5
—
Magnifying;— Overgeneralizing;—
Catastrophizing;—
Jumping to conclusions; or—
Engaging in other types of errant thinking?
She was unable to see how her thought fit those patterns, and she was unable to challenge the
truthfulness or helpfulness of this disturbing thought. She claimed to have spent 4 hours trying to
challenge the truthfulness of this upsetting statement at home, and even in the group was unable to see
the upsetting self-statement, "I'll never dance again," as anything less than 100% true.
Given that the usual approach to reframing the disturbing thought (ie, replacing it with a more truthful
and helpful thought) was ineffective, we used an alternative approach as suggested by Caudill. Rather
than challenge her upsetting thought, we accepted her most troubling thought, "I'll never dance again,"
as 100% true and then asked her the question, "So why does that bother you; what's the worst thing that
can happen?" Her response revealed that this "truth" bothered her because as outgoing President of the
Dance Club, if she could not dance, others would not want her to go to the club (her only social
activity). The second thought, "People won't want me at the Dance Club," was validated as a statement
she believed, again, to be 100% true. So, we asked the questions again: If that is 100% true why does
that bother you; what is the worst thing that can happen? Similarly, we followed this train of thinking,
"catastrophizing" through 3 more "truths" until she realized the worst (most upsetting) thing that could
happen was to "be alone."
After this realization, we systematically went back over the statements she believed to be 100% true and
challenged them. The first statement, "I'll never dance again," was revealed as an overgeneralization,
because she could still fox-trot or waltz; it was the swing and the rumba she was unable to do.
The second statement, that she would be unwelcome at the club, was first recognized as a distortion of
the "jumping to conclusion" variety. Referring to a different self-test she completed as homework
revealed that she is emotionally vulnerable in settings where exposed to the possibility of criticism by
others. This is related to a commonly held and deeply rooted value or perceived need for the approval
of others to feel good about herself.
Once Mrs. Tandy could admit to how important the social connections are in her life, she was able to
recognize that she has been feeling socially isolated from her friends and family since the time when she
cared for her ill and abusive husband. For many years, her only escape from the stresses of her family
problems, and her only major connection to the community, had been her involvement with the Dance
Club. No wonder the threat of losing this connection was so upsetting!
The outpouring of support from other patients in the group was very moving. They validated how
likeable she was and reassured her that they would continue to socialize with her, even if the dance club
members would not. The next week, she was meticulously dressed, smiling and laughing as she declared,
"I went dancing!"
Conclusion: Optimizing Quality of Life
Mrs. Tandy's pain improved after a combination of the following interventions:
—
Adjusting her medications;— Improving her outlook;—
Partaking in pleasurable and
meaningful social activities; and—
Enhancing her quality of life.
Ironically, this patient had at first asked to have her feet amputated, while in the end, her ability to dance
was her greatest source of joy. Realizing the importance of social interactions, she reconnected with her
family and eventually moved in with her daughter (and precious grandchildren). She was trained and
learned to volunteer at the pain management program, helping others to improve their lives as she had
done.
By grieving losses and maximizing her physical, mental, and social functioning, Mrs. Tandy was able to
transcend the limits of her disease and her pain, reaching out to others to become a more full and whole
person.
“Man does not control his own fate. The women in his life do that for him." Groucho Marx
A man and his wife were sitting in the living room discussing a “Living Will”
"Just so you know, I never want to live in a vegetative state, dependent on some
machine and fluids from a bottle. If that ever happens, just pull the plug."
His wife got up, unplugged the TV and threw out all the beer.
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Meeting Reports:
Sydney Support Group
Toongabbie
7th July 2007
Attendance: (21) Audrey T, Ray C, Krishnan & Usha R, Stewart & Gundel B. Kim K, Frank M, Kim
S, Jocelyn S, Lorraine P, Terry & Judith D, Vern & Stephanie R, Roy & Joan W, Dennis S, Vera R,
Irene W, Lilian B.
Apologies: (9) Anne & Laurie P, Carol M, Cecelia C, Henry & Jeanette B, Keith & Hilary W, Norma M
Guest Speaker: Adam Nicholls
We welcomed everyone to the meeting and had a chance to catch up with three new members.
* Krish: found out about the group about 3 weeks ago. He has experienced R side pain in the lower
jaw for 5-6 years.(div 3-mandibular) Triggers are talking, eating brushing teeth, touch chin, shaving. He
has seen about 20 dentists over 2 years. Finally found a dentist who suspected TN. Saw a neurologist
and started Tegretol-on 2 tabs per day for past 2 years. experienced acute pain for 3 months then
remissions for 6 mths. Was referred to Dr Dexter, the MRI shows compression of artery. Started Lyrica
3 weeks ago, with Tegretol. Has difficulty doing his job as it involves a lot of talking. pain gets worse in
evening after work.. Krish asked what is the success rate of MVD
Irene: in the hands of an EXPERIENCED surgeon the initial success rate can be as high as 90+ %.
Long term success for MVD =10 years or more is about 75%. Regarding a 2nd MVD, 50% do not
show a compression.(various papers). The surgeon may then use other procedure such as glycerol or
RF. In vein compressions, veins can re-grow.
Dr. Peter Jannetta, Spring 1995: “Pain recurs after a microvascular decompression for two
reasons. The first is that the pain was caused by veins running on the surface of the pons, the area of
the brain from which the trigeminal nerve exits. These have a great tendency to re-grow after being
removed during surgery - usually within three to six months. That can cause return of symptoms.
After the first two years, this kind of recurrence drops way down, and late recurrences occur at about 1
percent or less per year in our experience. Later recurrence is due almost universally to a new vessel
compression caused by elongating arteries or a "sagging" of the brain. Either of those can lead to
changes in the relationship between the nerve and surrounding blood vessels.” – Irene.
“Teflon is most widely used substance in Australia. Others such as muscle or fats may disintegrate.”
* Dennis has had TN for 18 mths. Started on Tegretol then gave it up. Pain in the right temple, eye,
nose and top lip and top teeth ( Div 1 occipital and Div 2 maxillary) Main triggers – touch lip, wind on
face, shower on face, chewing harder food, talking esp. when complicated or important (eg with job)
The ‘zaps’ come and go, he’s not too worried right now. It’s coming in cycles. Had a major episode
with attacks 30 secs long over Christmas. Went to hospital, confirmed Neuralgia but did get not
much help otherwise. Current meds are 2 x 100mg Tegretol & 200g Tegretol SR. side effects are
drowsiness/sleepiness.
* Lorraine provided me with a wonderful written comprehensive history. I will summarise her
info. Pain started Feb 1998 with apparent ‘toothache’ in upper teeth which had root canal and crown
work done. Over next 8 months every filling except crowns were replaced. “The pain was
excruciating like bolts of lightning through my face”. Her dentist spoke to a Dr. friend and sent her
to Westmead Dental Clinic School where they diagnosed in Dec 1998. started Tegretol 300mg per
day. Finally pain free after 11 months. Has experienced periods with no pain and flare ups which
are followed by med increases. Triggers –wiping nose, cleaning teeth, eating and talking of course!
Started Neurontin in Feb 2004 300 x 3 till pain subsided then reduced to use as backup Sep 2004 –
Tegretol CR 400MG total daily dose 1400mg. May 2005 diagnosed with bilateral TN. 2006 taking
Neurontin and Tegretol together. Oct 2006 referred to Westmead Pain Clinic. Continual increase of
Neurontin up to 1800mg and Tegretol CR 1400mg. “I can cope with zaps of electricity in my teeth
and face, but when my head feels like it’s being hit with bolts of lightning and I have to puree my
food I decide to draw the line.”
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Had MRI and saw Dr Dexter 31st May. Went ahead with Left side MVD at Westmead Private on 15th
June. Since surgery, felt seasick and ears blocked. Felt no pain from the cut, and pain free for 4 days.
Delighted to be able to clean teeth, rub eyes, wipe nose, eat and drink, PAIN FREE . Following some
mild TN pain, Dr Dexter advised there is a settling period. Still getting some mild TN. (only 3 weeks
since surgery)
* Lillian is going fairly well since her MVD with Dr Sheehy at St Vincents .She has some mild numbness
around the mouth.
We then welcomed our guest speaker Mr. Adam Nicholls who spoke regarding alternative treatment
options using Holistic Therapy.
The following report is from my own speedily written notes. Any errors are my own.
Adam gave on overview of different causes of TN and possible therapies
1.
Tumour –space occupying lesions –need to be excised, removed, radiotherapy
2.
Vascular Compression –treated with medication or surgery.
Nutritional support can include antiinflammatory Borage Oil, Primrose Oil and Fish Oil which all
contain GLA –Gamma Linolenic Acid
Frequency Specific Micro-current is non invasive therapy –less than acupuncture. to provide
antiinflammatory treatment on the nerve.
3.
Herpetic –or Post Hepatic virus –Herpes or shingles –the virus is in the nerve
Various possible treatments include
homeopathic vaccine for the specific virus, herbal extracts-olive leaf, grapefruit seed, pressed virgin
coconut oil
Frequency Specific Micro current
Acupuncture
4.
Idiopathic –‘we don’t know what causes it”
Most commonly treated using holistic therapy as no one else can find the answers
There are TN impostors with similar pain but in different places and usually neuro-muscular in nature,
sometimes involving stress and tension. Usually respond to neuro-emotional techniques to help
relaxation
5.
Dental –usually involves muscles of mastication (eating) –dental and TMJ occlusions most
common cause of TN related dental disorders.
6.
Cranial- No cranial bones are fused they are all separate and moveable and lock together. Able
to expand and contract with different pressures of fluid on the brain.
If cranial bones get jammed they are unable to pulsate, building up constant pressure. Both the
meninges and cranial nerves can be compromised by changes in intracranial pressure. This pressure on
the Trigeminal Nerve can cause excitation of the nerve and subsequent neuralgia. Cranial Vault Action –
every time we move the cranial bones alter, affecting the flow of fluid within the brain. Nerves
branching off the brainstem may become overexcited leading to dilation of blood vessels.
7.
Meningeal. The cranial lining cerebellum is at base of back of head – it controls balance. Nerves
being upset can upset balance. Atlas bones are at the top of neck connecting to skull. Meningeal sheaths
are highly sensitive monitoring and protecting systems and are part of the body’s survival mechanisms.
Slight alterations in the pressure, tensions, irritations to the body anywhere are registered by meninges
tissues and relayed to central nervous system for the appropriate response.
Meninges are elastic, allowing for some stretch, but if scar tissue causes shortening of meningeal surface,
adverse reactions like pain spasm and limited mobility can result.
Other Information
Cranial Sacral work involves anything to do with the tube which runs from the cranium to the sacrum.
Cranial Sacral therapy is the best treatment when meningeal impingement is suspected.
Cervico Cranial Junction-if the bone goes out of place, it can affect the jaw, muscles and also nerves.
Upper Cervical subluxations and fixations of the first vertebrae can trigger TN via multiple
ramifications.
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Meningeal entrapment, compression of occipital nerve, initiating trigger point pain, distort TMJ, fixate
cranial sutures, alter CSF flow, increase intra cranial pressure, trigger active morrow reflex.
Food Intolerances
Body thinks it is a poison and reacts. wheat is a common allergy due to CSIRO increasing the amount
of Lectins to act as natural insecticide. It becomes an irritant to the body. Main intolerances are due to
too much wheat, sugar, milk and food colourings.
Adam Nicholls offers therapies including cranial Osteopathy, Chiropractic, Herbalism, Homeopothy,
N.E.T, Orthomolecular Nutrition. Location: Putney - for details –9809 4859
We enjoyed a beautiful afternoon tea and a lively chat, as members shared info with each other and the
new members. A common comment from new members is
“ I wish I’d known about this group ages ago. It’s so good to talk to someone who understands.”
We hope that more health professionals inform patients about the Association so that they can make
contact with others and no longer feel like “I thought I was the only one with this dreadful condition.”
Thanks to all the wonderful members who help out with setting up the meetings and packing up
afterwards, and providing afternoon tea. You are wonderful!
Looking forward to our next meeting: 1st September, and then the conference!
Hope you all survive the cold windy weather.
Kim
Brisbane Support Group
14 July 2007
30 Ridley Rd Bridgeman Downs
ATTENDANCE: (19) Leonie G, Honor S, Noela W, Henry& Eileen C, Joan F, Audrey C, Nancy B,
Chris C, Bianca ,Margaret& Colin B, BJ S, Beryl M, Collette, John L, Leo L, Tony M, Mary M.
APOLOGIES: (4) Doug P, Lesley C, Fay K, Lorraine G.
$36.30 collected in donations.
Leonie opened our meeting introducing our guest speaker Greg Scanlan, an acupuncturist. Greg asked
for examples of treatment responses from the group. Several reported no benefit, and others claimed it
had assisted to some degree. Greg uses single use pre sterilised needles so there is no chance of
infection. Greg said, like music, there are many and varied styles of the treatment and patients need to
find the mode that suits. There is a variety in the type of needle used, some thick, some thin.
Patients need not fear needles as a thin needle with a light treatment is quite gentle.
Acupuncture uses a language different to traditional medicine when assessing pain. Chi is a form of
energy that reads the environment and reports to the body. If flowing freely, there is no place for
disease to reside. The type of pain determines the strategy employed. As trigeminal neuralgia is a blood
stagnation pain, acupuncture ought assist this condition. Other therapies, such as Chinese herbal
medicine, likewise assist, as blood moving formulas reduce blood vessel constriction. If using standard
medicines, Greg claims it is safe to also take herbs. His aim is to gradually reduce medication as there is
a cost to the spirit when energy is depleted. The herbs help many organs, including the liver.
A person’s condition can be read from the wrist pulse. There is a whole person attached to the nerve
causing the pain and so two people with the same complaint may be treated differently. There is a wide
variety of styles, even in China. The Japanese have been tinkering with it for 1500 years, though Chinese
styles are more common. Greg claims to have had great success with treating mental illness, depression,
fertility, morning sickness stress management. He spent two years in the US working in a very successful
drug detox centre using acupuncture.
We thanked Greg for his informative presentation.
We then shared our stories.
9
Leonie’s mum Correy is going quite well, managing with low dose morphine. Keeping the diary helps.
The number of major attacks has dropped from 4 to 5 down to 1to 2 per week and was well enough
recently to go on a trip to Newcastle to visit grandchildren!! Well done, Correy-the Brisbane mob up
here are often asking about your progress.
Tony has had a revisit of attacks and has trouble shaving and brushing teeth, though attacks are not
nearly as bad as 12 months ago when even just speaking would trigger 10 second shocks. He displayed
the forms of B12 available: tablets, Bob Harrison’s methylcobalamin lozengers, and vials of the two
commonly injected forms. He outlined the success our group has had with B12, particularly with
injected forms. The Neo-Bi2 injection( !gm/ml hydroxocobalamin) is painless and very cheap-$10-$20
for a pack of 3 ampoules. Depending on the pharmacy, you may not even need a script to get it and
most doctors seem to be happy for the patient to take home the remaining ampoules. The product does
not require refrigeration. He then described the far more concentrated injection, the 10 mg in 2 ml
methylcobalamin. This must be kept in a freezer below-5C. A script is required for this form. Tony
describes himself as a human guinea pig and has tried 3 of the 4 forms so far. He continues with
magnesium complex, a muscle relaxant, fish and flaxseed oil.
Joan F previously suffered so badly that she had to stop work. She tried a number of drugs and
described this therapy as disastrous. She now takes a magnesium complex, fish oil and one
methylcobalamin injection every 3 months. She had the injections more frequently when the attacks
were at their worst. She continues to be pain free and has stopped all medication except for the antidepressant Zoloft.
Audrey C suffers from MS and TN. She first had an MVD which gave 5 pain free years. This was
followed by a glycerol injection providing 2 years pain relief with no side effects. The most recent
glycerol procedure has eliminated TN pain, but has left the eye feeling as though it is full of water.
We warmly welcomed new member Nancy B. She was diagnosed 12 years ago at30 after experiencing
excruciating sudden pain in the shower. She then had all root canals removed by a dentist who then said
there was no more he could do. The GP prescribed antibiotics and told her to rest. This was followed
by 10 days in hospital on morphine. A cat scan and MRI detected a brain tumour the size of a golf ball
that had apparently been present since birth. Tumour removal gave 4 pain free years. After pain
returned, Nancy had an MVD delivering another 4 pain free years, though taste, hearing and the ability
to walk were affected immediately after the op. The pain has again returned quite aggressively. It affects
speech, eating, and kissing loved ones. Nancy uses meditation to help. Welcome, Nancy and supporters
Chris and Bianca.
B J’s pain likewise started while showering and thought she had been electrocuted. BJ had a bad
experience with tegretol and vowed to never use drug therapy again. She has taken the path of natural
medicine. A kineseologist prescribes flaxseed oil, magnesium phosphate and iron tablets including B12
and folic acid. She has been pain free for 3 years and simply takes more flaxseed oil when pain returns.
Noela W has had problems with the pain going into the jaw and affecting eating. This has settled down
now as she is seeing a very good acupuncturist who uses the Japanese style. Noela says hot tea helps.
She is also taking B12 tablets and is now eating on both sides.
John L is still on the Neo B12 injections. (hydroxocobalamin).He only requires one shot every 3 months
to keep the pain away. He urged us all to get our B12 level checked by blood tests. His level was
initially250pg. Two weeks after the first injection, it was over 700pg. He only ever experiences minor
pain now-2 small attacks while eating since our last meeting. He is no longer on tegretol.
Henry C finds that the TN pain is worse in the morning, usually waking him up at about 5am.The pain
is in the jaw and top lip, so severe that he is unable to shave in the early morning. He was previously on
200mg tegretol. Henry now takes 400mg and B12 tablets. He doesn’t think that the B12 has been of
help.
Beryl M is going fairly well on Neurontin and tegretol. She recently lost a filling from a tooth while
eating some nuts and like the rest of us, is dreading going to the dentist.
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Margaret in the early days of TN had lots of dental examinations. Her specialist has told her to avoid
draughts and dentists! She has now gone 2months and 3 days pain free. Yesterday she brushed her teeth
with cold water rather than the usual warm water and ended up having one hit and another this
morning. She has reduced her medication from 22 tablets down to 17. She has been on B12 tablets for
years, but since March8 this year has been on monthly NeoB12injections (hydroxocobalamin).She is
also taking a magnesium complex .Margaret’s cheeky husband ,Colin, said that one beneficial side effect
of the TN is that Margaret doesn’t talk as much!!
Mary M is on 1800mg Nerontin. She has reduced her workload. She was taking B12 tablets, but has
switched to the losengers and is currently pain free.
Leo L used all the usual medicines and then had the MVD, leaving him with Anaesthesia dolorosa.
While this is very annoying, it is still preferable to the pain prior to the op. And he has a condition, he
says, that sounds like an Italian film star! He will be visiting the Greenslopes Pain Clinic soon. Leo finds
that distraction helps.
Tony tabled Emails he has sent to federal member Peter Dutton and Dr Cindy Pan
We again finished with a cuppa and a good chat. Thanks so much to the supporters-Honor, Eileen,
Chris, Bianca, Collette and the naughty Colin who came along and patiently listened to our complaints.
To you, and our supporters at home, your gentle presence and understanding keeps us going.
THE NEXT MEETING WILL BE ON SATURDAY SEPTEMBER 22 ND.
Note the change due to the conference being on our usual Saturday.
TONY
Canberra Support Group.
Weston Creek Community Centre
Saturday 7th July 2007
Present: Marilyn W, Ralph E, Jan G, Nicola G, Veronica G, Linden and Joyce M, Brian W, Susan and
Greg M, Constance A, Barbara and Colin B,
Apologies: Richard M. Meeting opened at 10.35am.
Joyce had seen the notice of meeting on TV, up until then she and Linden were not aware of the
existence of our support group. Jan reported that the notice had also appeared in the Chronicle and
Canberra Times, each a week apart.
Jan read a letter from Richard M, who had attended his first support meeting in April. He had been
unable to attend in May or this meeting. He reported that he had been to see the neurologist suggested
by members and found him helpful. He is now trying Epilim. He was also seeing a physiotherapist and
felt he had some relief by following his instructions. The meeting agreed with Jan that it was
encouraging to hear that we had been able to help.
Brian was asked to tell us about his recent visit to the USA. He had seen a Dr Ron Apflebaum at the
University hospital in Salt Lake City. The doctor confirmed that the amount of Gabapentin he was
taking was up to the limit and explained what was involved in an MVD or glycerol injection. Brian
decided on the latter and this went ahead with only an overnight stay involved. Three weeks later it has
been successful to date and he is now off his medication. There are some other aspects in that he has
some slight numbness and the possibility of the return of TGN in months or years. Members asked
questions, including Colin as a friend of his had seen a specialist in Adelaide for the same procedure
which had also worked for him.
Constance is still experiencing burning all the time, she is taking 4 Dilantin and 2 Neurontin a day, also
is trying Endep. She is looking forward to the conference and hoping for some advice on relieving the
burning sensation.
Susan had started root canal therapy but it made her pain worse. She sucks Xylocaine which helps.
Barbara had been completely sedated for her treatment and gave the name of the specialist dentist she
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had seen. A referral is needed to see him. Susan also has a vibration in one ear which is bothering her.
The specialist Susan sees at St Vincents has told her to enjoy the good times and she is trying to follow
this advice.
Constance mentioned that she recently had a filling and had four injections and still was in pain. Jan
suggested the cause could have been that the injections used by the dentist contained adrenalin. Jan's
dentist is happy to use an injection that does not contain adrenalin, although it means he has less time to
work before the injection wears off. (Thanks to Irene who originally passed on this tip.)
Ralph is interested in ways to help his sister-in-law who lives interstate and developed TON after a
tumour was removed. She has tried various drugs and currently Trileptal is giving some relief. She had a
nerve severed some months ago but this did not give any relief. She had attended a support group in her
area accompanied by her husband. He had found it most interesting but she had found it depressing.
Veronica is pretty good. Was taking 1600mg Tegretol and 800mg Epilim which makes her very sleepy
but has reduced the Tegretol to 1500mg and uses Traminal to help reduce the pain. She has seen Dr
Tuck and the MRI found that the TGN is caused by her MS so cannot have an operation.
For Your Information:
THIN CUT MRI IMAGING OF TRIGEMINAL NERVE IN TRIGEMINAL
NEURALGIA PATIENTS PRIOR TO THERAPEUTIC DECISION MAKING
John F. Alksne, MD: Third Trigeminal Neuralgia Conference: 2002 San Diego, USA.
“Although most patients with Trigeminal Neuralgia (TGN) have a standard MRI scan to rule out
tumour or multiple sclerosis, the images are usually not adequate to clearly visualize the
trigeminal nerve and determine the presence or absence of a compressing blood vessel at the root entry
zone. Current thin cut technology using 1mm cuts without spacing, however, makes this
visualization possible and provides the patient with the opportunity to know their situation before
making a decision about which therapy to select.”
Dr. John Alksne will be presenting the use of such MRIs at our September 2007 National Conference.
--------------------- 00 ---------------------
Br J Neurosurg. 2005 Dec;19(6):463-8:
Some patients with multiple sclerosis have neurovascular compression causing
their trigeminal neuralgia and can be treated effectively with MVD: report of five
cases. Athanasiou TC, Patel NK, Renowden SA, Coakham HB.
Department of Neurosurgery, Institute of Clinical Neurosciences, Frenchay Hospital, Bristol, UK.
The role of trigeminal ganglion percutaneous injection and radio-frequency lesioning procedures for the
treatment of trigeminal neuralgia (TGN) in multiple sclerosis (MS) is well established. There is general
acceptance that microvascular decompression (MVD) cannot be an appropriate treatment due to the
view that the underlying aetiology is a demyelinating plaque affecting the root entry zone of the
trigeminal pathway. Recently, MR-imaging has been used in the preoperative investigation of this
group of patients demonstrating that neurovascular compression can occasionally be the
responsible mechanism and that MVD can be the treatment of choice. We present five cases with
MS and TGN. All the patients had failed to respond to medical treatment or percutaneous procedures.
Magnetic resonance imaging demonstrated evidence of neurovascular compression in four cases. All the
patients underwent MVD. Postoperatively four of the five patients made an uncomplicated recovery,
were pain-free and fully satisfied with the result (mean follow-up 38.75 months; range 8-59 months).
One patient developed recurrent pain 1 week following surgery and went on to have a total sensory
rhizotomy. TGN in MS can be caused by neurovascular compression, which may be identified
on MR-imaging. MVD has offered satisfactory short-term outcome for at least 2 years and does
not inflict sensory loss. Longer follow-up will determine whether the outcome in MS patients
will be as successful as in the TGN patients who do not suffer from MS.
Linden had all his fillings replaced by his orthodontist in an attempt to relieve the pain, this did not
work. Then had been hospitalised 7 years ago and given morphine for severe pain. This failed to relieve
the pain. When the pain suddenly ceased it was suggested that he had TGN and a MRI showed slight
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kinking but was told he cannot have an operation. 2 years ago he was back in hospital while on a
caravan holiday in north WA. He could only drive for one hour before he needed to sleep and when he
reached Perth consulted a doctor who told him he could not increase his medication. He was taking
800mg Tegretol and 1 Endep at night. This has been reduced to 600mg Tegretol and no Endep. He has
a dry mouth and has trouble eating due to this. He still becomes very sleepy.
Barbara had further questions about Brian's glycerol injection. She had had a nerve block but that did
not work. She is taking 600mg Lyricia and 1100mg Gabapentin, Epilim has been reduced from 800mg
to 100mg. She also has a burning sensation. Distraction therapy can work sometimes. An operation is
not possible for her. She keeps a daily pain diary for the specialist.
Surgical treatments are only helpful for people with classic trigeminal neuralgia – destructive
procedures such as Glycerol Injections could make the burning sensation worse and even cause
Anaesthesia Dolorosa. – Irene.
Marilyn has been going fairly well and her GP suggested she wean off the Baclofen. She continues to
take Epilim.
Jan had been going well since early this year on 600mg Tegretol. In the past she had tried reducing to
500mg several times but less than 2 weeks later the pain would increase so went back to 600mg.
Recently, she joined Irene's B12 study and for some weeks now has taken only 400mg. Intends to
continue with the B12.
Due to 3 members going to the conference and both co-ordinators being out of town in September the
date of the next meeting has been set for 13th October to give most members the opportunity to hear
reports from Brian, Constance and Jan re the conference.
Meeting closed at 11.40pm.
Our thanks to Veronica who headed over to the shopping centre where her partner helped reserve two
tables and enough chairs for eight of us to enjoy coffee and a chat.
Jan.
GOLD COAST SUPPORT GROUP
NEIGHBOURHOOD CENTRE PALM BEACH
28th July 2007
PRESENT: George & Pat F; Margaret & Phil S; Ann P; George M (visitor) Andrée C.
APOLOGIES: Bruce G; Irene N; Pip B; Joy D; Marjorie D.
Only a small attendance at this month's meeting.
George F is very well and pain free after his MVD last February. He comes to share his experience with
any who may be considering surgery. Thank you George. Good on you George. – Irene.
Also another George M came to visit, telling us about the MVD he had 10 years ago and how thankful
he is to have his life back.
Margaret S is still doing well on Endep with no side effects. A small dose keeps her quite comfortable
most of the time. She and Phil are off to Europe later this month; we wish you both a wonderful trip.
It was nice to see Ann P again; she doesn't have TN but suffers constant facial pain that started when
having dental surgery. She finds chewing on some gum brings relief.
We wish Irene, Pip and Marjorie a quick recovery.
Joy, we wish you a happy trip to Sydney and Bruce who will be in France in September; Bon Voyage.
Next meeting Saturday 29th September 10: 30 am
Andrée
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ADELAIDE SUPPORT GROUP MEETING
2.00 pm SUNDAY 28TH JULY, 2007
at KENSINGTON GARDENS BOWLING & TENNIS CLUB
ATTENDING: Graham & Liz B., Bert J, Jill W, Joan E, Gary & Lisa R, Laurel S, Kevin S.
APOLOGIES: Barbara S, Ann T, Margaret, Jean T, Glen & Carol H.
WELCOME: Graham welcomed everyone and asked if they had all received and read the previous
minutes.
NATIONAL CONFERENCE: Graham advised that he and Liz will be attending the TNA
Conference in September which includes a session for group leaders and hoped to return better
equipped to run the support group meetings. No other members have indicated they will be attending
at this stage.
WELLNESS CLINIC Unfortunately Ann was not able to attend the meeting so we were unable to
hear how her Wellness Clinic is progressing. Gary and Lisa advised they have been to one Wellness
Clinic session and are keen to continue and will give us an update at our next meeting. The courses
runs for 8 weeks. Jill has previously attended a clinic and said the sessions are invaluable.
MEMBERS UPDATE:
Joan is well at present. She has had the MVD procedure. She also had a calcified bone tumour. She
woke up from her operation pain free and described the feeling as “absolute heaven”. Joan’s husband is
very sick and the stress of this triggered an attack of shingles. Joan enjoys the support of the group and
finds it helpful to talk to people who know what she is experiencing.
Jill had a Glycerol procedure in November last year. Her pain lessened over the following 4 weeks.
She now has worsening pain in the roof of her mouth and gum pain It has been suggested she have
the MVD procedure, however she is reluctant at this stage and prefers to try other methods of pain
relief. She has started on a course of B12 tablets, acupuncture (her acupuncturist has given Jill some
tips on pain relief, e.g. pressure at the base of the thumb) and uses a TENS machine. Her dentist
recommended she use only Pink Sensodyne toothpaste. She is experiencing mouth drooping and a
runny nose and realises she must make a decision soon. Graham suggested Jill speak to Irene regarding
the B12 trials. Jill was advised of a Compounding Chemist at Glynde for the preferred B12. Graham
suggested that Jill borrow the video which shows the MVD procedure in detail.
Laurel: Takes Warfarin and has been told not to take B12 tablets, however compounded lozengers are
acceptable.
Bert: Fortunately is still pain free but experiences sensitivity in his cheek and is “aware” of his
neuralgia. He has mentioned our group to his G.P. who was very interested. Bert has tried Acconite
but found it unhelpful.
Kevin: Has slight pain. He tried Tegretol which caused a rash. Endep was not advised as he has
glaucoma. Chiropractic treatment has helped slightly and he is coping without any medication. He
finds wearing a mouthguard at night helps.
Laurel: Reported she has had the best winter for a long time as cold weather usually triggers off her
neuralgia. She has been on B12 for 10 months and believes it is helping her pain. She still has slight
numbness and a little pain but “gets on with life”. She has had two Glycerol procedures with 5 years in
between treatments. Her second procedure was not as effective as the first.
Gary: Is aware of pain all the time, around his mouth, nose and around the eye, but is not sure if a
stroke has caused his eye pain. Gary takes 4 x 600 ml Neurontin daily and finds keeping busy,
particularly at the computer, distracts him. Generally he feels better and the group agreed he looks
much better. He is looking forward to attending the Wellness Clinic. Gary’s wife Lisa while not a
neuralgia sufferer is also going to attend the Wellness Clinic to help with her arthritis.
Graham: now 18 months since undergoing Glycerol procedure and remains pain free with minimal side
effects.
Everyone enjoyed a “cuppa” and chat and then settled down to watch the video session which covered
Radiofrequency surgery.
14
FINANCES TO DATE: Donations received 28.7.07. $20.00. Total on hand $124.10. It was decided to
retain this amount to cover room hire should the bowling club become unavailable for future meetings.
Meeting closed at 3.50 p.m.
Next Meeting: Sunday 30th September, 2007 at 2.00 p.m. As it is the beginning of the bowls season
the Bowling Club have not confirmed that the venue will be available on that day. Members are asked
to contact Liz on 8392 2781 the week before to confirm venue.
.Graham & Liz B.
Thank you – All Support Group Leaders. Your promptness in sending your meeting report has helped
me pace my work and lessened my stress level. Well Done All. Keep up the good work. – Irene.
CORRESPONDENCE CORNER
Stanley: Dr. Danks preformed a miracle for me. I have not had any face pain in these last 2 years. A
little numbness in the right side of my face but I hardly notice it. I am frequently asked why I still attend
our meetings seeing that I don’t have trigeminal neuralgia pain. My answer is that it is a support group,
and I owe it to the lady responsible for making all this possible.
Irene: Dear Stanley, Your letter was very flattering- am too modest to publish the rest ☺! But thankyou for your support, I take encouragement from it. We do our bit and hopefully make a difference.
Alicia: Sorry for my absence. At the moment I feel OK, only my right side of my face is still asleep, but
I prefer that than the horrible pain. I hope it never comes back again. I'm enrolled at TAFE and my
classes run 5 days a week including Saturdays. I am unable to attend the meetings this year, but I’ll be
there when I get a chance.
Jan: Thank you for sending me the newsletter recently. Just to let you know that the TN diagnosis was
confirmed last week, neurologist, here in Adelaide. Prior to my appointment I had not had any
symptoms for about a month except for a couple of minor "stabs" in the days leading up to my visit.
The doc. wrote me a script for Tegretol. Thank you for your support and interest.
Melissa: I would really like to come to this( 2nd National Conference) with my grandma (she is the one
with TN) I feel that my nan would really benefit from this.
Irene: I am confident that the conference would be of great benefit to her as well as you. It would give
her the opportunity to meet other sufferers, gain support from them, meet and talk with medical and
dental experts in this field. It would give her a better understanding into the disorder and she would be
able to make informed decision - hence manage her pain better.
15
Laughter is the best therapy.
HOW DO YOU DECIDE WHO TO MARRY? (written by kids)
You got to find somebody who likes the same stuff. Like, if you like sports, she should like it
that you like sports, and she should keep the chips and dip coming.
-- Alan, age 10
No person really decides before they grow up who they're going to marry. God decides it all way before,
and you get to find out later who you're stuck with.
-- Kristen, age 10
HOW CAN A STRANGER TELL IF TWO PEOPLE ARE MARRIED?
You might have to guess, based on whether they seem to be yelling at the same kids.
-- Derrick, age 8
WHAT DO YOU THINK YOUR MOM AND DAD HAVE IN COMMON?
Both don't want any more kids.
-- Lori, age 8
WHAT DO MOST PEOPLE DO ON A DATE?
Dates are for having fun, and people should use them to get to know each other. Even boys have
something to say if you listen long enough.
-- Lynnette, age 8 (isn't she a treasure)
On the first date, they just tell each other lies and that usually gets them interested enough to go for a
second date.
-- Martin, age 10
WHEN IS IT OKAY TO KISS SOMEONE?
When they're rich.
-- Pam, age 7
IS IT BETTER TO BE SINGLE OR MARRIED?
It's better for girls to be single but not for boys. Boys need someone to clean up after them.
-- Anita, age 9 (bless you child )
HOW WOULD THE WORLD BE DIFFERENT IF PEOPLE DIDN'T GET MARRIED?
There sure would be a lot of kids to explain, wouldn't there?
-- Kelvin, age 8
And the #1 Favorite is........
HOW WOULD YOU MAKE A MARRIAGE WORK?
Tell your wife that she looks pretty, even if she looks like a dump truck.
--Ricky, age 10
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NEXT MEETING: 2007
ACT
13 October: 10:30 am
CANBERRA SUPPORT GROUP
Venue: Weston Creek Community Centre
Support Group Leaders: Jan Goleby – 62474508
NSW
29 September: 12:30am – 3:30 pm SYDNEY CBD SUPPORT GROUP
Pyrmont Community Centre
Cnr of John and Mount Streets, Pyrmont
Support Group Leader: Irene Wood 02 45 796226
1st September: 2:00 pm – 4:30pm
TBA
10:00 am – 1:30 pm
SYDNEY SUPPORT GROUP
Toongabbie Public School,
Cnr. Fitzwilliam and Binalong Rds, TOONGABBIE
Support Group Leader: Kim Smith 02 9769 1947.
COFFS HARBOUR SUPPORT GROUP
Sawtell Uniting Church, 24 Elizabeth Street, SAWTELL
Support Group Leader: Ailsa Braid 02 6658 3051
NEWCASTLE SUPPORT GROUP
Meeting - suspended till further notice
QLD
22 September: 1:30pm - 4:00pm
BRISBANE SUPPORT GROUP
30 Ridley Rd., BRIDGEMAN DOWN
Co- Support Group Leaders: Leonie Gall 0407 55 44 07;
Tony MacPherson 07 3822 2286
29 September 10:30 am – 1 pm GOLD COAST SUPPORT GROUP
The Palm Beach Neighbourhood Centre,16 Third Avenue, Palm Beach.
Support Group Leader: Andree Chenevier 07 55200228
18th August: 1: 00pm
SUNSHINE COAST SUPPORT GROUP
Fletcher Dental Surgery, 23 Beach Rd, MAROOCHYDORE.
Support Group Leaders : Connie Holden: 07 54833939
Neil Westbrook: 07 54451700 ; Teresa Miller: 07 54912487
S.A
30 September: 2:00pm
ADELAIDE SUPPORT GROUP
Kensington-Marryatville Bowling Club.
Corner of The Parade and East Terrace, KENSINGTON GARDENS
Support Group Leaders : Graham/ Liz Boyer: 08 8392 2781
& Barbara Stentiford 08 84452019
VIC
11th August:
1:30pm
MELBOURNE SUPPORT GROUP
"Ringwood Room" Ringwood Library, RINGWOOD
Support Group Leader: Evelyn Diradji 03 9802 6034
Contact: Irene Wood, P O BOX 1611, CASTLE HILL, NSW 1765 Australia
Tel : 02 45796226, Email: [email protected] or [email protected]
Web : www.tnaaustralia.org.au
Disclaimer: This Newsletter is not intended to diagnose, prescribe or to replace the services of your physician.
It is solely for your reading pleasure. No part or whole of this newsletter may be copied without the
permission of the author. ©
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