Prepared
by Janet Borron-Richer, Nobleton, Ontario
My husband Tom
had extensive dental work done 3 years ago which triggered the
onset of TN. Since then we’ve both learned a lot—about
ourselves, the medical system, and the realities of living with
a long term medical condition. I’d like to share some
experiences and insights we’ve gained in the hope of easing the
journey for others.
We were quite fortunate when
Tom saw a neurologist and had a correct diagnosis early in the
TN onset. We hoped that the TN would go away and that Tom would
one day wake up and feel better. Having had no significant
experience with pain or illness made the thought of long term
disruption to our lives unimaginable. We simply didn’t know what
had hit us. About 2 years ago that we accepted TN was not going
to go away any time soon. That’s when we decided to get
proactive with the medical system.
My first step was to attend a
visit with Tom’s family doctor. Here’s what I observed and
learned over the past few years:
1.
Ensure that your loved one is giving an accurate
description of the pain and its impact. The TN sufferer may be
coping with their pain by disassociating from it. They might be
minimizing their pain to stay positive. The drugs may be
clouding their perceptions. Unless the doctor sees an attack
they may not have any idea of the severity of the pain.
2.
Have a list of questions and concerns ready. Write notes.
Have an action plan.
3.
Let the TN sufferer do as much of this as they can. The
idea is to support not take over. Let the TN patient do as much
as they can for themselves.
4.
Support your loved one in keeping track of medication.
Regular doses are crucial for pain management For example, if
Tom falls asleep at night on the couch I’ll wake him up to
ensure he’s remembered his drugs.
5.
Start a file or series of files to record medications,
doctor’s appointments and their outcomes, dates of medical
procedures like cat scans and MRIs. Get copies of specialist
reports and procedures; ensure the history of the illness is
accurately recorded.
6.
Do your own research. Get informed/ use the internet/
join a support group- join a support group even if your loved
one won’t go with you.
7.
Find a specialist who is familiar with TN. Speak to TN
sufferers in your region and ask for recommendations. We spent
2.5 years being shuffled from neurologist to neurologist. We
never saw the same doctor twice. Often they hadn’t had time to
read his history thoroughly and prescribed drugs Tom had already
found ineffective. We found our current specialist through a
recommendation. He is excellent and the first to consider
options other than drugs.
8.
Tell all doctors and hospitals that you will take
cancellation appointments at short notice. We were amazed at how
quickly we got MRI and CT scans done.
9.
Enlist the cooperation of your place of employment. Send
an article on TN to your boss and co workers. Remember that they
have no idea what you’re going through—it’s not personal.
My sincerest wishes for a smooth road
ahead.
Dr. Anthony
Kaufmann, Medical Advisor to the TNAC has agreed to answer your
questions. If you have a question for Dr. Kaufmann, please send
it to the newsletter at
newsletter@tnac.org
by e-mail, to Jan at (403) 295-0987 by phone or mail to TNAC
Newsletter, #207 15 Everstone Dr. SW, Calgary, AB, T2Y 5B5
Q: What is
the effect of air travel on TN? Specifically long International
flights.
A:
I
don't know of any problems with TN being aggravated and
triggered by air travel.
Q: I would
be interested in knowing if there are any statistics on the
length of time between the first attack & the second, third,
etc.
The attacks
of TN pain typically occur in clusters called exacerbations.
These may last weeks or months. Most sufferers then enjoy times
of remission with no TN attacks. Sometimes, these remissions
may last months and rarely years, especially early in the
disease course. However, TN usually becomes more severe and
comes more often (ie - less and shorter remissions). Even
during remissions, the threat of the inevitable next
exacerbation can be a torture.
Calgary, Alberta
The next
meeting will be on Wednesday Sept 21, 2005 1:30 pm at the
Macleod Coop Center Community Room – 8818 MacLeod Trail South.
Contact Jan at 403-295-0987 or email
jan.williams@shaw.ca.
·
The
Calgary group will join Toronto in spirit at least by
participating in the “Face-Off on Face Pain” Campaign. We’ll
wear our ribbons and have a support group night out hopefully
the same day as in Toronto which is planned for September 24th.
Contact Jan for details.
·
Plans are in place
for a major seminar in the spring. Everyone is welcome
·
We will have an
information session where educational videos and DVDs will be
shown during the “Face-Off on Face Pain” week. Dates and times
to be announced later.
·
We will plan a
garage sale for the spring to raise funds to support group
activities.
·
In Calgary we will
distribute pamphlets and ribbons to doctor’s and dentists
offices during the “Face-Off on Face Pain” week.
Donations to
help support the Calgary group are welcome – to make a donation
please mark clearly on your Check to the TNAC that this is to
support the Calgary group.
Lethbridge, Alberta
Lethbridge Support
Group meetings are held the second Saturday of each month. The
next meeting will be on 2 pm Saturday, Sept 10, 2005 at the
Lethbridge Senior Centre, 500 – 11th Street, South,
Lethbridge. Contact Marion Guzik at 403-327-7668.
Toronto, Ontario
The Toronto Support Group will
meet September 25th, at 9:30 a.m. at the Thornhill Community
Centre, 7755 Bayview Ave. Thornhill, Ontario. For more
information, please contact Kathy Somers (905 853-9849), Sandra
Arangio (905 284- 9215) or Dana Lavrence (905-886-7563),
Toronto Chapter Face-off on
pain
We want to make TN more known
and to reach out and help others.
We are planning a dinner out
for anyone in Ontario who would like to join us. Family and
friends welcome. Meet others who share your pain and truly
understand what you’re going through. Join us to help promote
our first "Face-off on Pain” week. For further information
call Kathy Somers e-mail
kathleen_somers248@hotmail.com
Other activities planned:
·
Letters and blue
ribbon to be sent to family, friends, and pain clinics
in Toronto to promote pain week and help others.
·
Garage sale to make money for our chapter.
Vancouver, BC
Next
Vancouver and Lower Mainland, BC Support Group Meeting:
q
Saturday, September
24, 10.30 am to 1.30 am.
q
G. F. Strong Rehab
Centre, 4255 Laurel St., Vancouver (Laurel at West 26th
–just east of Oak St. close to Children’s Hospital)
Group members
will be sent a meeting notice via email and snail-mail. The
agenda is not yet set for the meeting; however, Dr Chris Honey
neurosurgeon at Vancouver Hospital has agreed to speak to the
group – the date to be announced. Also, we now have 20 DVDs of
speakers from the annual TN Conference in the USA which we can
view. (First, I need to sort out the technical requirements. Is
there anyone out there with technical skills who can help? If
so, please call me. Thanks)
Our list of
group members should be available in a spreadsheet format by the
next meeting.
Thank you to
all those who have supported TNAC and its mission to “end the
pain” by joining over the course of the summer, and to those of
you who’ve made charitable donations to the Vancouver and Lower
Mainland group via TNAC. Great news on this front! See you in
September.
Questions,
input, suggestions, rides, support? Please contact Ann Hopkins,
Support Group Coordinator, 604 732 1673 or email annhopkins@shaw.ca
TNAC Annual General Meeting
The TNAC Annual general Meeting was held in
Lethbridge on August 13, 2005. There were three members of the
Board of director plus three members in attendance.
PRESIDENT’S REPORT – August 13, 2005
Another year has
come and gone and I would like to report that we have gained a
little more ground.
Jan Williams, Support Group
Leader for Calgary and Ann Hopkins, Support Group Leader for the
newly formed Vancouver Support Group, are reporting very good
success with their groups.
Jan is now a
co-editor of the TNAC News and has been busy setting up a
newsletter committee, so that the newsletter will get better and
better and is the Webmaster of our web page.
Presentations by
Dr. Anthony Kaufmann were held in Ottawa and Edmonton.
Unfortunately, in Ottawa we have yet to get a Support Group
formed and if there is someone out there that is willing to help
Robert Dunlop form this group that would be great. However, no
one as yet has come forward to fill this position.
We sincerely
hope that a Support Group in Edmonton is going to be formed in
September, 2005, as 2 people have indicated they would like to
get one started. I know there are a number of people in the
Edmonton area that would like a Support Group and certainly hope
it will become a reality.
Negotiations are
going on with Saskatoon to get a group started there, however at
the present time; our contact is battling with TN, so it is on
hold for now.
Jan Williams and
I attended the American Neurological Conference in Toronto in
October, 2004, and had a complimentary table. This was our
first experience and
exposure of this kind and we gained a lot
of knowledge. We have again been invited to their conference,
but as it will be held in the US, find that we are not in the
position as yet, to branch out that far.
The Membership in our
Association is growing and we have now more than 300 paid up
members and there are many more people in Support Groups who
have not joined the TNAC. It is our policy to allow anyone who
wishes to join a Support Group to do so, without becoming a
member of the TNAC. We urge any of our members who become
discontent with TNAC, to come forward and discuss their issues
with the Board.
Information Packages are being
sent out to anyone who requests them, so if there is anyone you
know of that would benefit from them, please let us know.
We are still learning and
growing, but sometimes we learn the hard way.
Our By-Laws were adopted at the same time
as we applied for our non profit society status and now that we
have been in operation for 2 years, it is time to take a look at
them to see if they are really working for us, and I am sure
changes will and should be made. This is par for the course for
non-profits, as at the time you are doing the by-laws, you
really don’t know what your associations needs are. Hopefully,
we will be able to discuss the direction for the TNAC and to
make recommendations to the members on new by-laws or ways that
we want to govern ourselves.
I will be stepping down as the
President of the TNAC at the end of this term. I have
accomplished what I had set out to do, which was to get all the
people with Trigeminal Neuralgia in Canada together, and to get
our Charitable Organization status from Revenue Canada, form a
Non-Profit Society plus establish independent Support Groups
across Canada, which is not as complete as I would have liked it
to be, but this all takes time.
I now feel it is time for
someone who is younger and healthier than me, to carry on with
the organization and take it to the next level
I want to thank all of you for
your patience, guidance and understanding and a special thank
you goes out to Don Brewer, our Sec. Treasurer, Board Members –
Mona Leslie, John Edwards and Patty Moyer, who was not only a
board member, but taught me how to use a computer, set up the
various programs so that I was able to keep records for the
TNAC. Patty also piloted the TN News and Website of which you
all enjoy. Without all of your help, I could not have done the
things that have made the TNAC a viable organization.
I would like the minutes of
this meeting to record a vote of thanks to Don, Mona, John,
Patty and Jan for their valuable contributions to the TNAC.
Hope you all have a wonderful summer. ------- Marion
Financial Statement
TRIGEMINAL
NEURALGIA ASSOCIATION OF CANADA
Balance Sheet
as at June 30, 2005
|
ASSETS |
|
Petty Cash |
$300.00 |
|
Chequing Account |
9840.81 |
|
TOTAL CURRENT ASSETS |
$10140.81 |
|
|
|
|
EQUITY |
|
Retained Earnings – previous
year |
$ 9353.51 |
|
Current Earnings |
-212.70 |
|
TOTAL EQUITY |
$ 9140.81 |
|
|
|
|
REVENUE |
|
Revenue from Donations |
$ 2829.00 |
|
Revenue from Memberships |
2830.00 |
|
Revenue from Sales |
686.00 |
|
TOTAL REVENUE |
$ 6345.00 |
|
|
|
|
EXPENSES |
|
Office Expense |
$ 1399.05 |
|
Postage |
1313.62 |
|
Telephone |
437.64 |
|
Bank Fees |
60.00 |
|
Book and tape purchases |
563.24 |
|
Gifts |
921.91 |
|
Travel |
1718.36 |
|
Other Expenditures |
143.88 |
|
TOTAL EXPENSES |
6557.70 |
|
|
|
|
NET INCOME: |
$ -212.70 |
Prepared
by Pat Rogers, Comox BC
Topamax-(topiramate)
Classification: Anticonvulsant
Description: Topamax has been approved for use in Canada
since 1997. It was developed in the mid '90's as an adjunctive
(add-on) medication for epilepsy and other seizure disorders. It
is used in cases where the condition is not adequately
controlled by the current medication the patient is taking. With
some success Topamax has been used in the treatment of cluster
headaches, migraine prevention, post-herpetic neuralgia and
neuropathies characterized by the more burning, constant pain.
It has also been used as a mood stabilizer in bipolar affective
disorder.
Warnings & Precautions: Rare incidents of decreased
perspiration with increased body temperature have occurred with
Topamax. In hot weather or during strenuous exercise it is
advisable to increase fluid intake to prevent serious health
problems. Kidney stones. About 1.5% of people taking Topamax
develop kidney stones. This is approx. 10 times higher than in
the general population. Men appear to be at greater risk. Ensure
adequate fluid intake to minimize the risk of stone formation.
Acute Myopia (nearsightedness) and Closure Glaucoma: Although
rare, this syndrome has been associated with the use of Topamax.
Symptoms include sudden onset of blurred vision, worsening of
the ability to focus or painful/red eyes. Symptoms usually occur
during the first month of therapy. If these symptoms occur
immediately contact your doctor. Like other anticonvulsant drugs
Topamax should NOT be stopped abruptly. This medication can
cause side effects such as drowsiness or difficulty
concentrating; which can affect the ability to drive or operate
machinery. Care should be taken to assess how the medication
affects mental or physical abilities prior to undertaking these
activities. Pregnancy & Lactation: Safety has not been
established to assess risk, insufficient studies have been done
with humans. Studies with rats show that the drug did cross the
placental barrier & is excreted in breast milk. CNS depressants:
Alcohol should be avoided. Other Central Nervous System
depressant drugs such as antihistamines, sedatives and certain
pain medications should be used under the advice of your doctor.
Adverse Effects: The most frequent side effects reported
include: difficulty concentrating, slower thinking,
forgetfulness, confusion, drowsiness/fatigue, dizziness,
tingling, speech or language problems (such as difficulty word
finding) and co-ordination problems. Other reported side effects
(not a complete list) include: loss of strength, nausea,
constipation, dry mouth, weight loss, decreased appetite, taste
changes, insomnia, double or blurred vision, rash, abnormal
thinking (ex. paranoia) and mood disturbances such as anxiety,
agitation or depression.
How It Is Taken: Topamax can be taken with or without
food. It is well absorbed with a peak plasma concentration
achieved in 2-3 hours. In adults the usual starting dose is
25-50 mg. taken at bedtime. It is then increased at weekly
intervals by 25-50 mg. per day. Some physicians may prefer to
titrate the dosage at a different rate. Ex. increasing the
medication approx. every 4 days at a smaller dosage to reach
pain control. Recommended daily dose is between 200-400mg. per
day divided in 2 doses. Maximum recommended dose is 800 mg. per
day.
How It Is Supplied: Topamax comes in 25mg, 100mg. and
200mg. tablets or in 15mg & 25mg. capsules. Tablets should be
taken whole as they have a bitter taste if chewed or crushed.
Sprinkle capsules can be taken whole or the contents can be
sprinkled on a small amount of soft food. It showed be swallowed
immediately and not stored to use at a later time.
** For educational purposes only, for additional information on
this or other medications please contact your doctor or
pharmacist. Ensure to inform your doctor about all
prescriptions, over-the-counter, herbal medications and
supplements you are taking prior to taking any medication.
Donations:
Vera Cail – Camrose, AB
R. Rocky Robitaille, Gatineau, QU
Amy Kohnke- Dawson Creek, BC
Elizabeth Blake – Williams Lake, BC
Kathrine McCran Leach- Kanata, ON
Allan Waxman – Toronto, ON
Shahida Nurani – Coquitlam, BC
Cy Saltzman – Richmond, BC
Marilyn Najm- Banff, AB
Chris Goodman, Calgary, AB
IN SUPPORT OF SANDRA ARANGIO- Markham, On.
Michelle Quattrociocchi – North York, ON
For THE VANCOUVER SUPPORT GROUP:
Joya Dickson, Dickson Media Services –
Delta, BC
Along with this donation, Joya says “Many
thanks. Ann is doing an incredible job for all of us who are in
the support group in Vancouver. It’s amazing how people who
suffer with this terrible nerve condition can find time to help
others in similar situations. She is one in a million.”
Thank you Ann for your dedication and to
Joya for the uplifting news of what a Support Group means –
Marion
NEW MEMBERS:
R. Rocky Robitaille, Gatineau, QU
Chris Nikiforuk – Whitby, ON
Andrew Nikiforuk – Calgary, AB
Cy Saltzman – Richmond, BC
Speedy Recoveries to:
Ann Peterson, Calgary
By Cy Neill, Rocky Mountain House,
Alberta.
I have had TN
since 2001 when I first experienced the lightening bolt while
washing my face. This was followed by a very severe headache.
My doctor diagnosed my TN right away and put me in touch with
another person in the community who had TN and who was able to
share his experiences with me.
I decided on
the Gamma Knife treatment in Winnipeg and contacted Alberta
Health Care to see if they would cover the expenses. I was told
that they would pay for the procedure provided that:
·
It is medically required procedure
·
The Doctor is a licensed practitioner
·
The surgery is not considered experimental
·
The Doctor accepts AHC payments
So I contacted Dr. Kaufmann and was
scheduled for a treatment Dec 3, 2003. I arrived at the
hospital at 5:30 am to register, was met by Janice, The Gamma
Knife Patient Coordinator, who brought us to the unit. I was
then fitted with the steel helmet which was screwed to my head
in 4 places – they froze the contact points first. After this,
Dr. Kaufmann put a plastic covering over the helmet, took
precise measurements and then I was sent for an MRI and a CAT
scan.
Then I went into the Gamma Knife Unit
(GKU) which looks similar to an MRI unit. The helmet is secured
to an apparatus on the GKU table. Everyone leaves the room and
the procedure which is absolutely silent and painless begins.
It lasted 28 minutes and was so peaceful I almost dozed off.
When it was over, we had a bite to
eat and then went shopping. A mild headache was the only
discomfort I had.
I had a pretty rough time with TN for
the next two weeks and was wondering if I was going to be one of
those patients where the surgery might worsen the situation.
However, on Dec 22 I woke up free of pain and stayed that way
until Sept, 2004 when I started to get mild twinges. That has
gradually become worse and I am starting back on medications
again.
Ideally I would like to have a repeat
Gamma Knife treatment but Alberta Health is refusing to pay for
it and in fact have sent me a bill for $17,000 for the one
treatment I did have. I’m currently waiting for some reports
from my doctor to be evaluated by the Alberta Government.
********
Jan’s note: I wrote to the Alberta
Minister of Health and Wellness, Mrs. Iris Evans, to ask about
the Government’s position. In her response she said “Alberta
Health and Wellness provides funding for Gamma Knife procedures
performed in Winnipeg when specific criteria have been met and
prior approval has been obtained. For the Gamma Knife
procedures received by Albertans through the approval process,
the Winnipeg Health Sciences Center submits invoices to the AHCIP in the amount of $17,000 for the hospital costs. This
policy will be in effect until such time as Gamma Knife
procedure becomes eligible for reciprocal billing or some other
funding arrangements can be made.”
What makes this all very interesting to me
is that the ACHIP also wrote to Cy and asked for a reason why
the new Radiosurgical Center in Calgary was not used for
treatment. That center as of Aug 25, 2005 has yet to complete
its first treatment for TN as they are waiting for some part for
the machine. Until that part arrives they are not able to treat
TN so its not available. Wonder why the government department
responsible for it does not seem to know that?
It’s the same Government Department
that oversees the Calgary center and should know it is not ready
to treat TN that refuses payment for the Gamma Knife in
Winnipeg.
Good luck Cy and please
let us know what is happening with you and if there is anything
we can do to support your cause.
Summer is almost over already and the
weather is playing tricks on us here in southern Alberta. It was
chilly enough today that everyone who came in to my worksite
said that it felt like October instead of August. I’m almost
positive that I saw a couple of those nasty little fluffy white
things fall to the ground this afternoon. Of course my
grandchildren are thrilled with that idea! Not me – I’m a warm
weather person. Hopefully we’ll see some nice warm weather again
soon.
How does everyone like our newsletter
lately? Comments (both good and not so good) are more than
welcome. You can send them to me or to Jan Williams. We want to
make the newsletter as informative as possible for everyone. If
you have any stories, ideas, or whatever, please email us at
newsletter@tnac.org.
Is there any one of the members who would
like to send us a story on the spousal/family support of a TN
sufferer? We would like to hear from a few members on how your
family helps you deal with your pain.
Something else that I would like to hear
about for future inclusion in the newsletter is what sort of
experiences you have had following one of the surgical
procedures (MVD, etc.). By this I mean how you have coped coming
down off the drugs, have you had any more pain, has there been
other things going on that may be related, etc.
I hope everybody has a great month ahead
and we’ll see you next issue.
Patty
HAPPY BIRTHDAY AND HAPPY
ANNIVERSARY
TO THOSE WITH September
CELEBRATIONS
The
TNAC News