Email: newsletter@tnac.org

Where to Turn When TN Strikes

Marion’s Desk

Trigeminal neuralgia (TN) is one of the most painful afflictions known. It is characterized by episodes of excruciating stabbing or electrical shock-like pains, which are confined to one side of the face. The pain occurs in short, brief episodes with periods of no pain between painful attacks.

TN has been around forever. One of the very early descriptions was made about 1677 of a patient who had such severe pain he was unable to eat and died of malnutrition. There have been various treatments over the years. Many were ineffective and bizarre by today’s standards but because of the nature of TN with periods of remission, people thought these treatments were successful.

The early surgeries damaged the nerve usually by severing it. It wasn’t until 1968 when Dr. Peter Janetta discovered that in most TN patients he could identify a blood vessel lying on or near the trigeminal nerve. He discovered that by separating the blood vessel from the nerve he could cure the disease. Thus the Microvascular Decompression surgery was born.

TN has distinct characteristics:

Trigeminal Neuralgia is caused by the irritation of the nerve due to a blood vessel compressing the nerve. The brain interprets even the slightest touch as extreme pain.

There is a related condition of the trigeminal nerve called "neuropathy" and that causes similar symptoms but has different causes. The nerve can be damaged by MS, infections, trauma or by a tumor. Usually pain caused by a tumor is constant and associated with numbness. In some cases blood vessels can be pushed against the nerve by the tumor and those patients will have the more classic symptoms.

TN Treatments

Left alone, TN will always get worse. It is important for all TN patients to develop a plan so that when the next attack occurs you can take appropriate action. Don’t wait until you are in the midst of an attack to try and decide what to do.

The first treatment is drug therapy – usually with Tegretal (Carbamazepine). If this drug relieves the pain, it helps confirm the diagnoses. There are several medication options, and it is important to have these prescribed carefully to maximize benefit and minimize side effects. Unfortunately, as TN becomes more severe over time, over ½ of the sufferers will develop intolerable pain or drug side effects or both; then several surgical options are available.

Microvascular Decompression

In this surgery, the blood vessel(s) that is compressing the nerve is moved and Teflon padding is placed between it and the nerve. This is done through a small opening in the skull behind the ear. This surgery has the best potential for long-term relief of the pain. The relief of pain is usually immediate. About 70% of people will have a permanent cure.

The success rate of the MVD and the rate of complications are very much influenced by the number of surgeries done by the team. Statistically, those surgeons who do more MVDs per year have significantly fewer complications and better results for their patients. For example Dr. Kaufmann has done over 400 MVDs with no major permanent complications.

Nerve Damaging Procedures

These are also called Rhizotomies. The nerve is purposely damaged by chemicals (glycol), heat (radio frequency) or direct pressure (balloon). The Neurosurgeon slides a needle through the cheek into an opening of the skull (foramen ovale; falics) to the trigeminal nerve. The damage to the nerve interrupts the pain signals in some way not completely understood. The pain relief is usually immediate although approximately one half of the patients will suffer a reoccurrence requiring further procedures.

The nerve can also be damaged through focused radiation, called stereotactic radiosurgery. This is most commonly performed with a Gamma Knife, such as the one in Winnipeg with over 18,000 patients treated worldwide. Unlike the "needle" procedures, pain relief usually occurs after 3 weeks, and about 1/3^rd of the patients are still pain free after 5 years.

The real message of the seminar is that almost everyone with classical TN can be helped. There are different treatments available and new drugs being developed. If you have TN, start thinking now about how you want to be treated when the next attack occurs. Have a plan.

By Ann Hopkins

Coordinator, Vancouver & Lower Mainland Support Group

At our June meeting in Vancouver, Hypnotherapist Di Cherry talked to us about hypnosis and taught us some simple techniques for self-hypnosis as a way to reduce stress and keep healthy.

What is hypnosis? It’s a state of highly focused and relaxed awareness in which you concentrate on something specific. Did you know that you’re in hypnosis for several hours every day? Have you ever driven home and yet don’t remember much about the drive? Or got so absorbed in a TV movie that it seems more real than your living room? That’s hypnosis. You’re always in control and can snap out of it at any time.

In hypnosis your brainwaves have slowed from beta to alpha. You can use this state of mind to work with your body to reduce stress and anxiety and support healing. Or you can simply meditate or just rest and relax for 20 minutes once, or preferably twice a day.

Studies have shown that people who meditate or use hypnosis techniques and visualizations reap health rewards. Benefits include lower blood pressure, fewer heart-related problems, stronger immune systems and more. Hypnosis for 20 minutes a day delivers enormous benefits.

And there’s a way to really maximize those benefits. Your body has a 24-hour rest and activity cycle known as an Ultradian Rhythm. The only thing you need to remember about this cycle is that every 90 to 110 minutes the dominant lobe of your brain switches from left to right, and there is a 20 minute rest period between each cycle. The way we divide up our time, and the conventional working day with its morning and afternoon break, reflects this natural rhythm.

If you meditate, relax, or do self-hypnosis during the 20 minute "rest cycle" you are giving your body a wonderful gift of rest and renewal by maximizing the opportunity to heal and refresh the body. Over-riding this natural cycle as so many of us do, creates stress.

How do you identify at what stage you are in the cycle? Have you ever been working on something and you find your mind drifts and you daydream, or you go to get a drink or take a washroom break? You’re probably in the rest cycle. You can find this out by checking to see if your breathing is equally balanced between both nostrils – it if is, you are. If your breath flows more easily through one nostril than the other this indicates which hemisphere of your brain is dominant. If your right nostril is easier to breathe through, then the left hemisphere is dominant. If your left nostril is easier to breathe through, then the right hemisphere is dominant.

Interestingly, each side of your brain has different characteristics. The right hemisphere is creative, visual and intuitive. The left hemisphere is good at analysis, words, precision and critical thinking. And although both hemispheres are always active, you’ll find it’s easier to do your taxes or balance the household budget when your left hemisphere is dominant!

Stress is a silent killer. Long-term stress has been implicated in heart disease, chronic illness and mortality. The stress response is a brilliant physical adaptation involving hormonal changes that enable you to cope with a physical emergency like fleeing from a hungry lion or avoiding a traffic accident. But these same stress hormones can get switched on at any time by anxiety and worry, during an emotional crisis or disaster, by chronic pain and for repeated, arbitrary, unpredictable, agonizing, electrical pain attacks beyond our control like TN.

As we all know, TN is incredibly stressful. Although not life threatening, the wear and tear on the body and emotions can be enormous. And so is the fear and anxiety that can accompany it. Although I’ve always been strong and fit, over time the stress of trying to keep going with TN collapsed my general health bringing all kinds of new, unwelcome experiences like allergies, psoriasis, bronchial asthma, regular asthma, tachycardia… and much more. Meditation and hypnosis were the only things that began to address and slowly unwind the new levels of discomfort I’d achieved with such success by toughing it out and ignoring my stress.

The wonderful new edition of Striking Back published by TNA, USA, discusses self-hypnosis techniques on page 390-391. (This edition is twice the size of the first edition – I highly recommend it.) I’m going to reproduce the book’s instructions for hypnotizing yourself (From The Encyclopedia of Healing Therapies, 1977)

If you can do this once a day you’ll be reducing your stress hormones and supporting your health. If you can do it during your body’s natural rest cycle, you’ll be more than doubling the benefit. And if you can manage to do it two or three times a day, congratulations. We may not be able to control our TN any more than we can control the prevailing wind, but we can trim our sails to make the best of the voyage. This has helped me. I hope it helps you. Good luck & Bon Voyage!

(BAK-loe-fen)

Classification:  Muscle Relaxant, Antispastic

Description:  Baclofen is used to relax certain muscles to reduce spasms, cramping and tightness.  It acts on the central nervous system (CNS) to produce its muscle relaxant effects.  It is prescribed for medical conditions as MS or certain injuries or diseases to the spinal cord.  In TN it can be beneficial because it imitates the effect of a brain chemical that slows nerve cell activity.  Baclofen can enhance the effectiveness of anticonvulsants like Tegretol or Dilantin.  Its actions on the central nervous system may also cause some of the medications side effects.

Warnings:  Baclofen should NOT be stopped abruptly due to withdrawal symptoms (except in severe adverse reactions).  These symptoms can include:  convulsions, dyskinesia (impairment of voluntary movement), confusion, psychosis (visual and/or auditory hallucinations, paranoia), anxiety with tachycardia (rapid pulse), or insomnia.  Check with your doctor for the best way to reduce the dosage before stopping the medication.

Precautions:  Though an allergy to this medication is rare, the signs of a reaction are difficulty breathing and/or a skin rash. 

Baclofen can raise blood sugar levels, which can pose a problem for diabetics.  The presence of other medical conditions may affect the use of Baclofen.  These include:  kidney disease, history of a stroke, epilepsy or mental/ emotional problems.  Older adults are usually more sensitive to this medication than younger adults.  Side effects like hallucinations, confusion & severe drowsiness may be especially likely to occur.  This medication will add to the effects of alcohol and other CNS depressants such as: antihistamines, sedatives, tranquilizers, sleeping pills, certain pain medications and anticonvulsants.  Increased drowsiness can occur. 

Side Effects:  Side effects most frequently occur at the start of treatment, especially if the dosage is increased too rapidly.  These effects are often temporary as your body adjusts to the medication or can be eliminated by decreasing the dosage.  However, check with your doctor if side effects continue or are bothersome.  The most common side effects reported are drowsiness, fatigue, dizziness, weakness, decreased coordination and nausea.  Others reported: (not a complete list) are headache, insomnia, depression, tremor, constipation, diarrhea, difficult or painful urination, urine retention, loss of appetite, low blood pressure, muscle or joint pain, pounding heart beat, slurred speech, dry mouth or weight gain.

Dosage:  Baclofen is supplied in 10mg. or 20mg. tablets.  The usual starting dose is 5 to 10 mg. taken 3 times per day (15-30mg/day).  With an increase in medication about every 3 days.  Usual maximum dose is 80mg. / day, though adequate pain relief can be achieved at about 50-60 mg. per day given in divided doses.

The presentation in Edmonton went very well and two people have indicated they would like to start up a Support Group. I hope that we will be able to get one going, in the fall, as many of those in attendance are in favor of having a Support Group.

The Striking Back Books that I had for sale are now gone. I have 3 that have been spoken for, so to those people, please send in your money and I will send them out to you or you may cancel if you wish but please let me know.

I will be ordering more, and hopefully, we will be able to get them at the same price. If you wish to buy one, please let me know and I will put your name on the list.

Our August meeting will be our Annual General Meeting, so please attend.

Hope you have a safe and pain free summer.

Marion

Support Group News

The next meeting will be on August 24, 2005 at 1:30 pm in the Community Room at the MacLeod Co-op, 8818 Macleod Trail South. There will be no meeting in July. Contact Jan at 403-295-0987 or email calgarytnac@hotmail.com for more information.

A message from Kari: I am looking for people who have facial neuralgia and are interested in joining a support group in the Edmonton area. I live in Tofield, a small town southeast of Edmonton and having a group of people who can understand what we are going through would be wonderful. Please email me at kari@sunshineplaygrounds.com if you would be interested in participating

Lethbridge, Alberta

The Lethbridge Support Group meetings are held the second Saturday of each month. The next meeting will be on Saturday, August 13, 2005 at the Lethbridge Senior Centre, 500 – 11^th Street, South, Lethbridge, Alberta. For more information please contact Marion Guzik at 403-327-7668.

The Toronto Support Group will meet on Jul 31, 2004, and August 28, 2005 at 9:30 a.m. at the Thornhill Community Centre, 7755 Bayview Ave. Thornhill, Ontario. For more information, please contact Dana Lavrence at 905-886-7563, Sandra Arangio (905) 284-9215 or Kathy Somers (905) 853-9849

There will be no meetings in July or August. The next meeting will be in September. Contact: Ann Hopkins - Ph. 604-732-1673 - email: annhopkins@shaw.ca

        Edie first developed some symptoms of TN in 1969 following a serious plane crash. At that time she had a head injury and a whiplash injury. The sharp, stabbing pains were in her head and face. They grew steadily worse until 1991 when she had a severe and acute attack which was overwhelming and left her face tingling. She was seen in the emergency department that night and diagnosed with TN. She was started on Tegretal.

        Tegretal did not totally control the pain in spite of being on up to 2300 mg per day. Her whole life was controlled by the need to take multiple doses of Tegretal. She would write out a schedule each day of when she was taking the drug so as not to skip or delay a dose and let the pain break through. She credits her use of herbal medicines for decreasing most of the mind altering side effects common to Tegretal users but she did have liver damage and osteoporosis. (Tegretal is known to deplete calcium in some individuals and can cause osteoporosis). During the time she was on Tegretal, Edie estimates she lost approximately 2 inches in height and developed a dowagers’ hump – both signs of osteoporosis.

        Edie lives in Winnipeg and was seen by neurologists and a neurosurgeon there. In 1995 they recommended an MVD and added her name to a waiting list which was about six months to a year long. Given her concerns with the toxicity of Tegretal, she decided to go to the Mayo Clinic for a second opinion. The specialists at the Mayo Clinic confirmed the diagnosis and raised a red flag about her continued use of Tegretal. They were concerned about the damage being done to her liver and to her skeletal system. They recommended an immediate MVD so she could discontinue the drugs. Edie decided to return to Canada for the surgery. With the help of a recommendation from the Mayo Clinic, she was able to go to the top of the waiting list in Winnipeg and had her MVD done in 1995 by Dr. Norman Hill.

        Ten years later Edie is still pain free. She does not require any drugs for TN and calls herself "cured." She would be pleased to talk to anyone in Winnipeg who wants to discuss her story.

        One interesting fact – Edie’s brother has recently developed some symptoms of TN. He too has a history of trauma but it was many years ago. It is an interesting coincidence that two people in the same family have had serious head trauma followed by TN.

        Edie lives in Winnipeg with her husband. She has one son aged 32.

Phone (204) 831-5356

Donations:

 M.M. Gresson – Winnipeg, Man.

Art & Margaret Lomas- Gwynne,AB

Mona Wells – Lethbridge, AB

Mary Merrill – Ottawa, On

Maureen Leonard – London, On

Arlayne Davies – Blackie, AB

June Angus – Saskatoon., SASK

Lorne Haner – Red Willow, AB

Olga Ferrer- Red Deer, AB

Rene & Pat Rogers – Comox, B.C.

Nadia Lewis – Richmond, B.C. – Vancouver Support Group

Ann Hopkins – Vancouver, BC – Vancouver Support Group

Peter Miller – Oakville, ON

Hugh Laycock – Lethbridge, AB

Jean Reimer – Sidney, BC

Alice Law – Toronto, ON

Rita Berlando – Lethbridge, AB

Dr. Ruth Turner – Saskatoon, SK

Our Deepest Sympathy to Arlayne Davies of Blackie, AB on the loss of her mother.

and to Vera Cail of Camrose, AB on the loss of her husband

From our Members

Hello Patty

  The Newsletters are terrific.  I always enjoy them and find them so informative and helpful. I love getting monthly newsletters - but feel that even 6 per year would be helpful - also to combine the June/July and also Dec/Jan - no problem.

  Thank you for all your work in contributing to a wonderful newsletter and organization. Take care and have a great day!

… Rose J

Hi Patty

Several years ago I had a root canal - and shortly thereafter - experienced my worst TN attack.    My dentist has now suggested that 2 of my front teeth would 'look better' if capped. 

Although I have had cleanings without a problem - I am concerned that 'replacing a cap and preparing for the 2nd one ' - may stimulate the TN again.  At this point I am pain free and feel 'normal' again. 

If anyone has had any experience in this area, I would appreciate your comments.

Rose James

Pickering, Ontario

                 **************

-- When cooled it can be divided into containers and stored in fridge (the extra containers can be frozen until ready to use) 

 …Pat R.    

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Patty’s Ponderings

            Well here it is the beginning of July already. This year sure seems to have gone by quickly. Just the other day my youngest grandson said to me “Hey Gramma, do ya know it’s only 6 months to Christmas time?” Wow – that’s amazing. But I think I’m ahead of his game already because I have half my shopping already done. With 6 grandchildren I have to start early!

            I hope everyone is enjoying the new articles and changes for the newsletter. Jan has been working very hard on it. Starting with this issue we have a little help from some of our other members and I know that it will alleviate some of our stress!

            Does anyone else wish to contribute items of interest to our newsletter? They don’t need to be long. Even just a little paragraph or two. Tell us about how you are coping or about something new that you have tried – whether or not it worked, etc. We appreciate all items and will find room for them.           

            I want to take a moment also to thank all of you who have generously donated to the TNAC. Your donations are greatly appreciated and it is these gifts that enable us to keep this organization going. Even just the cost of mailing out the newsletters monthly gets to be very expensive – the cost of stamps seems to rise every darn year now!

            I hope everyone has a very enjoyable summer. See you all next month.

Patty

August 13, 2 pm, Lethbridge

Agenda:

President's Report

Sec./Treas. Report

Discussions - a) Conference Line

b) Funding

c) TNAC Newsletter

d) Medical Advisory Board

e) Motion by Jan Williams –

Discussion: Last year everyone was elected at the same time to a two year term so the whole Board of Directors will be re-elected at the same time again. How about next year electing 3 people to a 2 year term and 2 to a one year term. After that in even years elect 3 people and in odd years elect two -- each for a 2 year term as it is done now. This will provide some continuity on the Board of Directors if and when there are changes.

Everyone is invited to forward their comments on any agenda item to one of the board members or via the newsletter email: newsletter@tnac.org. You can also post your comments on the forum at www.tnac.org/talk

TNAC Board of Directors 2005
President
Marion Guzik, Lethbridge, Alberta                president@tnac.org

Secretary Treasurer
Don Brewer, Lethbridge, Alberta               dwbrewer@telus.net

Board Members
Mona Leslie, Lethbridge, Alberta

John Edwards, Lethbridge, Alberta               jgedward@telusplanet.net

Patty Moyer, Coaldale, Alberta                  pgmoyer@telusplanet.net

This newsletter was prepared by Jan Williams from Calgary with submissions from Pat Rogers from Comox, Ann Hopkins from Vancouver and Marion Guzik from Lethbridge.

The next edition will be September 1, 2005.

You can send your suggestions and comments about the newsletter to us by email at newsletter@tnac.org.