Trigeminal Neuralgia Association of Canada
Published by: The Lethbridge Chapter
THE TN NEWS
February 1, 2004
Volume 4, Issue 2
EMAIL VERSION * EMAIL VERSION * EMAIL VERSION * EMAIL VERSION * EMAIL VERSION
WHO WE ARE.....
The Lethbridge Support Group is open to everyone who wishes to learn more about Trigeminal Neuralgia and who would like to support TN sufferer’s and their families. Meetings are held at 2 p.m. every second Saturday monthly at the Lethbridge Senior Centre, 500-11 Street South. Occasionally, films and/or guest speakers are presented. There is time reserved at each meeting for open discussion.
DISCLAIMER
This newsletter is not intended to diagnose, prescribe, or to replace the service of your physicians; but only to give you information about our member’s experiences.
DONATIONS
Donations to the TNAC are gratefully received. Your monetary support helps defray the cost of TNAC News, copies, supplies, postage, etc. Please make your cheque payable to Trigeminal Neuralgia Association of Canada and mail to: 1514 Lakemount Blvd., Lethbridge, Alberta T1K 3K4
LETHBRIDGE CHAPTER NEXT MEETINGS:
Saturday Feb. 14, 2004
2:00 p.m. @ Senior’s Centre
Saturday March 13, 2004
2:00 p.m. @ Senior’s Centre
IMPORTANT NOTE:
DUE TO THE MANY VIRUS’ THAT ARE FLOATING AROUND ON THE INTERNET, IF YOU EMAIL MARION, PATTY OR TNAC.ORG PLEASE PUT IN YOUR SUBJECT LINE: TNAC INFORMATION.
NOTE:
Is there any special information that you would like to see in upcoming issues of the TNAC News? Such as articles on different treatments, surgeries, etc. Maybe something about dental health while your TN is especially bad? Or a list of some good TN web sites or other reference sites to check out? There is a lot of information available but it would really help me to know what you want to read. Please email Patty with your newsletter input requests and I will see what I can come up with. I need to know what you want to read in the newsletters. I want to make them interesting and informative for everybody but it would really help to have your input. Thanks very much.
DONATIONS FOR DECEMBER Our apologies to Lois Henry, Manitoba who was inadvertently reported from Sask in the January newsletter
Audrey Halowaty – MB
Jim Van Loo – AB
Nadia Lewis BC
NEW MEMBERS FOR DECEMBER:
Helen Brown - AB
Hilda Janish- Ont.
Katherine Nero-Campbell – AB
Claire Forre - AB
BEST WISHES GOES OUT TO:
The following who had their MVD’s in January.
Chris Goodman, AB - Jan 6,
Sandy Rivey, AB - Jan. 13
Zennon Malec, AB - Jan. l3
To the following who had the Gamma Knife:
Gordon Gauley BC
Heather Scully , Ont.
And to Nadia Lewis, B.C. who unfortunately after going through a tough Rhizotomy is now having another rough time and will be looking at other options.
HAPPY BIRTHDAY’S TO ALL THOSE WITH FEBRUARY CELEBRATIONS!
IMPORTANT NOTE TO ALL TNAC MEMBERS:
Membership Fees for 2004 are due on June 1, 2004. If you wish to pay early, you may send in your renewal fee ($25.00) to: TNAC, Member Fees; 1514 Lakemount Blvd. South; Lethbridge, AB T1K 3K4
MARION’S DESK
I hope you are all still pain free and that 2004 will be good to you all. It doesn’t seem possible that January has passed already. Just think, 11 more months and it will be Christmas time again. Oh what a thought.
The TNAC is growing everyday. I am getting more and more inquiries now that our website is up. We now have links to quite a few other sites, thanks to Patty who has been busy letting them know we are here. People who did not know there was a Canadian organization are now very thankful that they have someone to talk to in their area, whereas before they thought they were alone. We have come a long way in such a relatively short time and hopefully it will continue.
The weather in Lethbridge has been desperately cold and windy, consequently, I am having a bad bout of TN again. Hopefully, this too will pass, so I will just sign off for this month.
Take care,
Marion
MY TN STORY:
Koo Mair, Richmond, B.C.
I was 20 years old and was sitting at home after work when I first felt it. I was convinced right away that I needed to see a dentist. I did not have dental so I decided that the next day I would go to the doctors clinic to see if they could help me get emergency dental. The pains happened many more times that night, bringing me to tears.
So I went to the clinic. There the doctor said he could help with the dental if it was in fact a dental emergency. I was asked to describe my pain and he poked at my teeth. Based on the description of my pain he said that I did not have a dental problem. I was shocked. He then told me that I have Trigeminal Neuralgia, but without any explanation he gave me VIOXX commonly used for arthritis and sent me home. I assumed that TN was like the flu it would heal in a matter of time and I would be fine.
The pains gradually got worse and much more frequent so two days after the clinic I decided to go back. This time it was a different doctor. As soon as the doctor came in I started to cry. I explained that I could no longer handle the pain and if something wasn’t done I was afraid that I could hurt myself. The doctor quickly left the room. When she returned she explained TN to me and that she was almost positive this is what I was suffering from. She sent me away saying that a Neurologists office would contact me.
One day later the neurologist contacted me. I went in shortly after and was immediately diagnosed. He was positive TN was what I have. I was given a mix of Tegretol and amitripiline ( an antidepressant used for chronic pain). The pain never really went away and was worse some days than others. Ice cream had to be given up completely because that was the biggest trigger for my pain.
Eventually after frequent appointments discussing my pain and the severe side effect from Tegretol, I went on Neurontin. Much better but the pain never went away completely. I lost some friends who couldn’t understand that just because you can’t see it doesn’t mean it’s not there! As well I also lost my job. It made me stronger and I feel for those people that can’t be understanding to others..
Now I am not currently pain free, but I have faith that one day I will be. I am not on medications due to the fact that I just had a baby girl. Still the best medication for me was Neurontin and I will be going back to that as soon as I can.
Koszima (Koo) Mair
Note: Koo has her own Webpage. Please log on to: http://aletta.Ocatch.com/koo.html
SUPPORT GROUP MEETING NEWS
CALGARY, Alberta:
Monthly meetings will be held on the third Tuesday of each month at:
Confederation Park, Senior Centre,
2212 – 13th Street, N.W.,
Calgary, Alberta.
The next meeting will be February 16th, 2004 at 7 p.m. Please mark your calendars for this date. For further information please contact Jan Williams at 403-295-0987 or email TNAC Calgary Group at
tnac-calgary@hotmail.com
TORONTO, Ontario:
The Toronto Support Group will meet on Sunday, February 29th, at 10:00 a.m. at the:
Thornhill Community Centre,
755 Bayview Ave.,
Thornhill, Ontario.
PLEASE NOTE THE NEW TIME. Mark you calendars for this date. For more information please call Dana Lavrence at 905-886-7563
WINNIPEG. Manitoba:
To this date we have not received any notification of a meeting date.
LETHBRIDGE, Alberta:
The next Lethbridge Support Group meeting will be on Saturday, February 14th, 2004 at the :
Lethbridge Senior Centre,
500 – 11th Street, South,
Lethbridge. Alberta
Please mark you calendars for this date.. For more information please contact Marion Guzik at 403 – 327-76689 or email mguzik@telus.net.
SUPPORT GROUP NEWS:
CALGARY: We are really pleased to report that the post-op MVD group are continuing to show improvement. Rick Keuben (Oct 28) has returned to work part time. Jan Williams (Nov 28) is pain free. Chris Goodman (Jan 6) is doing well and looks great! Sandy Rivey (Jan 13) is recovering at home.
LETHBRIDGE: Zennon M. had his MVD on January 13th, his birthday, and we will be looking forward to hearing all about it. I know that he had some problems, so we will be anxiously awaiting to hear what he has to tell us. Welcome home Zennon.
I want to bring you up-to-date on our raffle. With the help of Patty, Erna, Marion, the tickets are now available for distribution. They look very professional thanks to our computer expert Patty and Erna who stitched them. Please ask for them at our next meeting.
The brochures for the Doctors and Dentists are also ready to be distributed. We are hoping to make them more aware of TN in Lethbridge.
To the TN suffers in Alberta, I have just been advised that Trileptal is under review for the Blue Cross Plan. I know there are people besides myself that are taking this drug and we should know by March if it was passed. If not, we will then lobby for our cause. Trileptal is covered in Ontario and B.C and I don’t know about the other provinces.
TORONTO: Sandra Arangio will be having her MVD on Feb. 23. Our best wishes Sandra.
George Carlin’s View on Aging
….(submitted by Richard Foo, Calgary)
HOW TO STAY YOUNG….
1. Throw out nonessential numbers. This includes age, weight & height. Let the
doctors worry about them. That’s why you pay them.
2. Keep only cheerful friends. The grouches pull you down.
3. Keep learning. Learn more about the computer, crafts, gardening, whatever.
Never let the brain idle. "An idle mind is the devil's workshop." And the
devil's name is Alzheimer's.
4. Enjoy the simple things.
5. Laugh often, long and loud. Laugh until you gasp for breath.
6. The tears happen. Endure, grieve, and move on. The only person who is with us
our entire life, is ourselves. Be ALIVE while you are alive.
7. Surround yourself with what you love, Whether it's family, pets, keepsakes,
music, plants, hobbies, whatever. Your home is your refuge.
8. Cherish your health: If it is good, preserve it. If it is unstable, improve
it. If it is beyond what you can improve, get help.
9. Don't take guilt trips. Take a trip to the mall, even to the next county; to
a foreign country but NOT to where the guilt is.
10. Tell the people you love that you love them, at every opportunity.
AND ALWAYS REMEMBER
Life is not measured by the number of breaths we take, but by the moments that
take our breath away. We all need to live life to its fullest each day
**********************************************************************
Might As Well Dance
(Sent in by Helen Brown, Calgary)This was written by an 83 year old...The last line says it all.
Dear Bertha,
I'm reading more & dusting less. I'm sitting in the yard & admiring the view without fussing about the weeds in the garden. I'm spending more time with my family & friends and less time working.
Whenever possible, life should be a pattern of experiences to savor, not to endure. I'm trying to recognize these moments now & cherish them.
I'm not "saving" anything; we use our good china & crystal for every special event such as losing a pound, getting the sink unstopped, or the first Amaryllis blossom. I wear my good blazer to the market. My theory is if I look prosperous, I can shell out $28.49 for one small bag of groceries. I'm not saving my good perfume for special parties but wearing it for clerks in the hardware store & tellers at the bank.
"Someday" & "one of these days" are losing their grip on my vocabulary; if it's worth seeing or hearing or doing, I want to see & hear & do it now.
I'm not sure what others would've done had they known they wouldn't be here for the tomorrow we all take for granted. I think they would have called family members & a few close friends. They might have called a few former friends to apologize & mend fences for past squabbles. I like to think they would have gone out for Chinese dinner or whatever their favorite food was. I'm guessing; I'll never know.
It's those little things left undone that would make me angry if I knew my hours were limited. Angry because I hadn't written certain letters that I intended to write one of these days. Angry and sorry that I didn't tell my husband & parents often enough how much I truly love them. I'm trying very hard not to put off, hold back, or save anything that would add laughter & luster to our lives. And every morning when I open my eyes, I tell myself that it is special. Every day, every minute, every breath truly is a gift from God.
Life may not be the party we hoped for, but while we are here we might as well dance.
AN INVITATION TO TNAC MEMBERS:
If you decide to write Mr. Lawhern regarding this, please remember that he is from the U.S. so please check with your own insurance company and/or HMO (if you have one in your province) regarding their rules and regulations before you make any decisions.
To TNAC Members:
Of concern to facepain patients, is the difficulty we all experience in being heard by the medical professionals who treat us. Some doctors are not notoriously good listeners, and all medical professionals are rushed by rules of practice enforced by insurance companies and HMO's. Thus patients, their families, and occasionally even medical professionals, may benefit from an opportunity to correspond with someone who offers time and expertise to help sort out symptoms and issues either before or after a doctors' appointment. By knowing what questions to ask, you can make your time with a doctor more productive in the management of many medical conditions. Chronic face pain is no exception.
Readers of this newsletter are invited to correspond with Richard A. "Red" Lawhern, Ph.D., formerly a Board member, Webmaster and medical literature search expert for the Trigeminal Neuralgia Association in the US. Dr. Lawhern is the spouse of a patient who has managed TN with atypical symptoms, for over eight years. During that time, he has corresponded with over 2000 pain patients, and edited three chronic pain websites. Although not a medical doctor, (he is technically trained in engineering and operations research), he has written widely in the field of chronic facepain, and donates his time to aid patients in gaining mastery and management over their pain conditions. All are welcome by email, via lawhern@erols.com.
Written & published by: R. A. Lawhern, Ph. D.
This article is for people who have been informed by a medical or dental professional that they have a condition called "trigeminal neuralgia." We are concerned here with the question, "What treatments are available and how do I choose between them?" We will discuss options and (hopefully) shed some light on how you may choose between the options in a way that works best for you. As we begin, please accept this reassurance: although trigeminal neuralgia (TN) can be a long-term life issue for many people, a high percentage of patients find effective management and even long-term resolution of their TN through medications or surgical procedures.
About the Author:
The author of this article has been webmaster for the TNA Homepage and was a member of the Board of Directors of the Trigeminal Neuralgia Association for three years. My spouse has had TN with atypical features since 1996. For three years I have assisted patients with information research on causes and treatments of Trigeminal Neuralgia and other facial pain syndromes. However, I am technically trained in engineering -- I am not a medical doctor.
The Trigeminal Neuralgia Association has consented to publication of this article on its web site as a TN spouse contribution. The Association is not responsible for the medical accuracy of what appears here. You should assume that any errors are solely the author's. Before you accept or act upon the content of this article, you should give your physician a copy and discuss whether it applies to you. This work is offered for information only -- it is not intended to be substituted for the advice and counsel of a medical or dental professional. Likewise, the Association invites additional or contrary input by patients or professionals, concerning treatment choices for facial neuralgias.
(The following article is reprinted here with permission from R. A. Lawhern, Ph.D)
CHOOSING TREATMENTS FOR TRIGEMINAL NEURALGIA: Part 2
Continuing with the Chapter on How Did The Pain Start?
Ratner and some of his associates believe it is possible for an infection to become established in tiny pores or cavities of bone through which parts of the distribution of the trigeminal nerve pass. According to this theory, infection may take years to develop after an injury or surgery introduces bacteria into the bone. The nerve becomes inflamed due to the infection. Advocates of this medical model propose that pain may be treated by surgically opening these cavities, scraping out the infection and treating with antibiotics.
However, other dentists and many endodontists do not accept the idea of NICO, asserting that the bone cavities do not appear in dental X-rays or MRI imagery. They also argue against the idea that root canal can introduce infection in the first place, or that it may take years to develop to a level which causes widespread inflammation. At present, medical/dental practice has not arrived at a consensus concerning the proposals of Ratner, and the controversy continues in the medical community. For a more detailed discussion, the reader is referred to "NICO and Cavitations?", edited from an original article by Dr. Karen Evans.
The important thing to take away with from this discussion is that if your pain appears to emerge as part of a dental problem, then it may be appropriate to seek an orofacial consultation from a dental specialist who is also trained to recognize neurology problems. There aren't very many such people in practice, and you may need to find a facial pain center or teaching hospital to get help from an appropriate treatment team. Likewise, if "electric shock" face pain emerges shortly after an injury, then your treatment team may need to include a specialist in temporomandibular joint disorder, a trauma specialist, an orthopedist, or a chiropractor who works with the cervical spine. Your treatment options should definitely include a careful examination of all of your symptoms to determine if more than one disorder could be involved in your pain.
How Do You React To Medications?
Medication with anti-convulsant drugs is the first treatment that
many doctors and neurologists recommend. In fact, one of the most reliable
indicators that you actually have TN, is a rapid, positive response to an
anti-convulsant drug like Tegretol (Carbamazepine). Many people are able to get
total or near-total relief from the pain of TN by such means. However, patients
respond to these drugs in highly individual ways. The required dose for pain
relief may vary in a range that can reach over 1200 milligrams per day for
Tegretol, and higher for other types of drugs. Before you reach a dose level
sufficient to moderate your TN episodes, you might experience disturbing side
effects: drowsiness, inattention, memory problems, blurred vision and balance
problems are among the most common. As your body gets used to the drug, some of
the effects may pass or decrease. However, some people seem to be outright
allergic and cannot tolerate their reactions to such drugs. A few others --
particularly people with a history of bone marrow suppression, kidney or liver
toxicity -- may experience toxic reactions that are quite dangerous. Such severe
reactions can be avoided by periodic monitoring of your blood chemistry while
you use these drugs.
Thus you should be mentally prepared to go through a period of experimentation and dose determination, if you choose medication as your treatment for TN pain. The process is somewhat similar to what is used in allergy medicine. You and your physician need to find a drug or combination of drugs that addresses your problem without producing side effects that you cannot tolerate. A number of different drugs can be used individually or in combination. If you cannot find a combination which works for you, your doctor may recommend that you be evaluated for some type of neurosurgery.
Are You Depressed?
It's no secret that any chronic pain can be very depressing, both to the patient and to immediate family members. What may not be as widely known is that there are close biochemical links between pain and depression. Not only does pain suppress some chemicals in the brain that are needed to fight depression, but depression seems to affect chemical balances that make patients more sensitive to pain.
As a consequence, it is important for your examining doctor to be made aware of any changes that have occurred in your moods, your ability to enjoy favorite activities, or your sleep patterns since your TN has developed. Simple questionnaires can be administered to determine whether you are "down" in the same way that anyone may feel, who deals with continuous pain and limitation -- or whether something additional is going on that needs to be treated specifically. By treating you with antidepressant drugs, a neurologist and psychiatrist working together may be able to substantially decrease your sensitivity to pain and increase the overall quality of your life, thus making other treatments more likely to successfully control your TN.
What Other Medical Conditions Do You Have?
It is important to evaluate your alternatives in the context of both your general health and other specific conditions that may complicate your treatment. As an example, if you already have hepatitis or a kidney problem, your doctors are less likely to treat you with the most commonly used drug, Carbamazepine. This drug is known to have a risk of toxic side effects in people who are vulnerable to liver or kidney problems. Similarly, if you have a heart condition which requires you to wear a pacemaker, you may be unable to undergo MRI (magnetic resonance imaging) procedures that doctors frequently use to check for signs of TN, Multiple Sclerosis, or slow-growing brain tumors (MRI machines can disturb the action of some kinds of pacemakers). This situation may require your doctor to use other methods such as CT scan, rather than MRI.
Although research statistics are presently incomplete, it is known that multiple sclerosis (MS) and trigeminal neuralgia can occur together in some patients. Perhaps five percent of TN patients also have MS. The "plaques" or small scars which MS causes in the myelin covering of nerves may be a cause of symptoms like those of TN, even when the most common cause of TN (physical compression of the nerve by blood vessels) is not present.
As indicated in an article by Ronald Brisman, M.D., of the Neurological Institute at New York Presbyterian Hospital, "Medical management through the use of anticonvulsants is initially pursued for those with TN and MS. While this may be effective for many with this dual problem, many patients find that the use of these medications aggravates their MS symptoms such as balance and strength. If the medications cannot be tolerated or are ineffective, [then] neurosurgical procedures, especially the minimally invasive percutaneous procedures - glycerol injection, radiofrequency and balloon compression - may be helpful. Since compression of a blood vessel is not usually the cause of TN in an MS patient, microvascular decompression is generally not pursued as a choice of medical intervention. [Note] Recurrence rates following these procedures are slightly higher in those with MS, but in most cases, can be repeated as needed."
Author's Note [R.A.L.]: Gamma Knife radiosurgery is the most recent technique that has been pursued for some MS/TN patients. Although some patients have been helped by Gamma Knife, the results of this procedure appear to be better for TN patients who do not have MS.
NOTE: To Be Continued in March Issue……….
RECIPE
Patty’s Poppy Seed Cake (or cupcakes)
This cake is very easy to make and tastes wonderful. You can use different pudding and cake mix combinations. Makes 1 - 10 inch Bundt pan or about 18-24 cupcakes depending upon how big you want them.
1 (18.25 ounce) package yellow cake
mix
1 (3.4 ounce) package instant vanilla pudding mix
2 tablespoons poppy seeds
1 cup water
1/2 cup vegetable oil
4 eggs
1 teaspoon almond extract
1 Preheat oven to 350 degrees F
(175 degrees C). Grease and flour a 10 inch Bundt pan or use inserts in cupcake
pans.
2 In a large bowl, stir together cake mix, pudding mix and poppy seeds.
Make a well in the center and pour in water, oil, and eggs. Beat on low speed
until blended. Scrape bowl, and beat 4 minutes on medium speed. Pour batter into
prepared pan.
3 Bake in the preheated oven for 50 minutes, or until a toothpick
inserted into the center of the cake comes out clean. Let cool in pan for 10
minutes, then turn out onto a wire rack and cool completely.
CUTE: (received from Jan Williams, Calgary)
While driving in Pennsylvania, a family caught up to an Amish carriage. The owner of the carriage obviously had a sense of humor, because attached to the back of the carriage was a hand printed sign... "Energy efficient vehicle: Runs on oats and grass. Caution: Do not step in exhaust."
People want the front of the bus, the back of the church, and the center of attention.
A father was approached by his small son who told him proudly, "I know what the Bible means!" His father smiled and replied, "What do you mean, you 'know' what the Bible means?" The son replied, "I do know!" Okay, said his father. "So, son, what does the Bible mean?" "That's easy, Daddy. It stands for 'Basic Information Before Leaving Earth."
Patty’s Ponderings & Miscellaneous Ramblings:
I hope everybody is doing well and staying warm. We have been having quite a ‘deep freeze’ the past week with temperatures running into the high –30’s and with wind chills approaching –47. Yuck—too darn cold for me!
I’m still working on the improvements for the web site. In the next batch of updates, I’ll be posting the current newsletters also. More links are coming too. Stay tuned.
This month I want to share one of my favorite poems with you. Hope you all have a wonderful February.
Patty
Always remember to forget the troubles that pass your way. But never forget to remember the blessings that come each day.
Hope Is A Thing With Feathers
By Emily Elizabeth Dickinson
Hope is a thing with feathers
That perches in the soul
And sings a tune in the woods
And never stops at all
And sweetest, in the gale, is heard
And sore must be the storm
That could abash the little bird
That keeps so many warm
I’ve heard it in the chilliest land
And on the strangest sea
Yet, never in extremity
It ask a crumb of me.
TNAC (Trigeminal Neuralgia Assoc. of Canada)
BOARD OF DIRECTORS
EXECUTIVE DIRECTORS
Marion Guzik; President
Don Brewer; Secretary/Treasurer
DIRECTORS:
Mona Leslie
Patricia Moyer
John Edwards
CONTACT INFORMATION:
Head Office and Lethbridge Support Group
Marion Guzik
TNAC President
1514 Lakemount Blvd. South
Lethbridge, AB T1K 3K4
Phone: 403-327-7668 EMAIL: mguzik@telus.net
TNAC Newsletter:
Patty Moyer, TNAC Editor
P.O. Box 973
Coaldale, AB T1M 1M8
Phone: 403-345-6262
EMAIL: pgmoyer@telusplanet.net