levetiracetam--Keppra

 

 

Classification:  Anti-convulsant

                Uses:  Keppra is one of the newest anti-convulsants being used to control seizures, as an add-on medication. It appears to work by preventing nerve cells from firing. Since it is a new drug there is not a large amount of data as to how it can help various types of pain such as neuropathic pain. Some patients during studies have reported good to excellent pain relief. More studies are still needed as it is largely unproven as a pain killer thus far.

                Warnings & Precautions:  Contact your doctor immediately if you experience any severe or allergic reaction to Keppra or any of its ingredients. Kidney function: Those with an impaired kidney function may need a lower dose as the medication will take longer than usual to clear from their bodies. The risk of adverse reactions therefore may increase. This medication can cause drowsiness/ decreased mental alertness 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: There are no adequate studies as yet in pregnant women; safety has not yet been established. Studies have shown that the medication is excreted in breast milk. Occasionally this medication may decrease the effectiveness of some oral contraceptives. Alcohol should be avoided. As well, other medications that can cause drowsiness such as antihistamines, sedatives and certain pain & cold medications should be used under the advice of your doctor, excessive sedation can occur.

                 Adverse Effects:  Although rare a serious blood disorder can develop which involves a decrease in white blood cells (leukopenia) or a decrease in cells needed to fight infection (neutropenia). Side effects are not experienced by everyone and may go away as your body adjusts to the medication. Check with your doctor if they become bothersome. The most common side effects reported include: drowsiness, weakness, loss of energy, dizziness and cold symptoms such as runny nose, cough, dry throat, hoarseness & tender/ swollen glands. Less frequently reported: bruising, loss of appetite, weight loss and skin sensations like itching, tingling, prickling or burning. Contact your doctor as soon as possible if you experience: unsteadiness, double vision, lack of co-ordination, vertigo, fever, lower back or side pain (kidney), difficult or painful urination, shortness of breath, tight chest, tooth disorders and though uncommon psychological reactions may be triggered. These include nervousness, outbursts of anger, paranoia, rapidly changing moods and depression especially when accompanied by thoughts of suicide. This is not a complete list of possible side effects and some people can experience adverse effects other than those listed.

                Dosage:  Tablets are supplied in 250mg., 500mg. and 750 mg. dosages. Keppra is usually started at 1000mg. per day given as 500mg. twice daily. Dosage is increased every 2 weeks. Depending upon the condition it is used for, the max. dose for treating pain is approx. 1500mg per day. If used to control seizures the max. dose can be 3000mg. per day.  Many things can affect the dosage a person needs. These may include other medical conditions (like renal impairment), a person's weight, age and other medications that the person is taking. Do not stop taking the medication suddenly, as with other anti-convulsants it should be withdrawn gradually. Always consult with your doctor regarding changing the dosage. Levetiracetam can be taken with or without food.

 

** 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.

 

 

 

Please send your letters via email to newsletter@tnac.org or mail to Patty, TNAC editor, Box 973, Coaldale, AB, T1M 1M8

            NOTE: For anyone who missed the show that the US did on Inside Edition on TN go to Yahoo, type Inside Edition, look on the right, type in trigeminal neuralgia, and click on watch video and you can watch the show from there.

 

 

 

Our web site (www.tnac.org) is getting more and more attention from around the world. In January, February and March of 2005 we averaged about 500 new visitors each month. Now for the same three months in 2006 we are averaging over 1500 new visitors each month. The top three countries where people come from in 2005 were Canada, USA and Japan; this year it is USA, Canada and Germany.

The forum provides an outlet for people to express their opinions or to “talk” to others with TN. It is not very busy yet, but has proven invaluable to those who use it. Check it out at www.tnac.org/talk. There is a lady there who really wants to set up a support group on Vancouver Island. If you live on the island and are interesting in attending a support group please contact me and I’ll pass your name along to this lady.  Jan Williams (403)  295-0987 or by e-mail jan.williams@shaw.ca.

 

 

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, or snail mail to Patty at Box 973, Coaldale, AB, T1M 1M8.

 

 

 

Due to illness, work and family demands of some of the newsletter team, the March issue was shorter than anticipated. We apologize for this and hopefully have made up for it this month.

We have some excellent articles for you this month. Ann Hopkins, Vancouver and Lower Mainland Coordinator submitted the “Striking Back Table of Contents” and Pat Rogers, Comox BC submitted the “TN-Facial Pain Questionnaire” and “Drug of the Month. All of these articles are very well written and I want to thank Patty, Ann and Pat for their dedication and ongoing contributions to the TNAC. This is what makes a great Association, people who are dedicated and willing to work together.

If you have an article that you would like published in our Newsletter, please send them to Patty or Marion. We need all the help we can get to bring you interesting and informative news.

Wishing you all a Happy Easter.  Until next time –

Marion

 

 

 

New Members:

Donald Britton, Midland, ON

Chris Willis – Kingston, ON

Debra Proven – Courtland, ON

 

Donations:

Robert Dunlop – Ottawa, ON

Don Brewer – Lethbridge, AB

Mona Wells – Lethbridge, AB

John Edwards – Lethbridge, AB

Gladys Redfern – Lethbridge, AB

Audrey Korman - Winnipeg, MB

 

Donations For The Calgary Group:

Jan Williams – Calgary, AB

Sharon Habiak – Calgary, AB

Bernice Balyk – Calgary, AB

 

Other Donations:

In Honor of Sy Moskowitz

Love and Best Wishes for a Very Happy 80^th Birthday - The Icyk Family, Esther, Henry, Bryan and Warren – Thornhill, ON

In Memory of a Brother-In-Law & Uncle Stan Merkel: Vera Cail – Camrose, AB. Kenny and Kathy Roth, Daysland, AB

The D. Liedtke Family – Diane & Dennis, Jackie & Brent Lane, Jeff & Silvia Liedtke- Victoria, B.C.

In Memory of Heather Scully:

John and Terry Scully, Ottawa, ON

BEST WISHES to Rene Rogers of Comox, B.C. who is scheduled to have an MVD on his Birthday April 25^th with Dr. Honey in Vancouver. Happy Birthday Rene and hope this will be a very happy “No More Pain” day for you.

 

 

 

Calgary, Alberta

The Calgary group continues to meet on a monthly basis. Meetings will be the last Saturday of the month at 2 pm at the MacLeod Trail Co-Op, 8818 MacLeod Trail South. Meeting dates are April 29, May 27, June 24. There will be no July meeting.

For more information please contact Jan at 295-0987 or by e-mail at Calgary@tnac.org.  

Three members of the Calgary group had surgery in March: Gaye, Marilyn and Jan. All are doing well and we thank everyone for the good wishes, prayers and kind thoughts sent our way.

Lethbridge, Alberta

The next meeting will be on 2 pm Saturday, April 8, 2006 at the Lethbridge Senior Centre, 500 – 11^th Street, South, Lethbridge. 

Contact Marion Guzik at 403-327-7668 or lethbridge@tnac.org

 

Toronto, Ontario

Next Toronto Meeting: Sunday April 30th at the Thornhill Community Centre, 7755 Bayview Ave. Thornhill, Ont. 9:30 a.m. You do not have to be a member of the TNAC to attend meetings. Family and friends welcome.

On Wednesday April 22nd the Toronto chapter had its second TN dinner. 39 TN patients and supporters joined one another for a wonderful dinner at Frankie Tomatto's. Dr. Kaufmann just happened to be in Toronto and joined us for dinner. The evening was a great success and I think everyone enjoyed the evening and learned a great deal. On behalf of the Toronto Chapter I know I speak for all of us in thanking Dr. Kaufmann for caring about us and wanting to join us for dinner.

If you had any major dental procedures done before you were diagnosed with TN would you please e-mail your story to Kathy at toronto@tnac.org I'm going to write an article for the Ontario Dental Assoc. magazine and want to make sure I have proper names of some of the procedures TN patients received before being diagnosed with TN. Also if there is a dentist out there who would like to work with me please contact me as above.

Super Cities Walk for MS. Sandra Arangio & Kathy Somers will be walking in the Toronto walk for MS. It is my dream that when they find a cure for MS they will find one for TN. We will be walking in the 5k walk for anyone who would like to join us. If you can't walk because of your pain perhaps you have a family member or friends who would like to walk with us. The walk is Sunday, April 23rd, at the Sunnybrook Park (Leslie & Eglinton); sign in 8 a. m. at the sports pavilion. Walk begins at 10 a.m. for more information go to www.supercitieswalk.com. Perhaps you live out of Toronto & would like to walk in your own town or city. The above website has all the information including map & you can register on line or call 1-888-822-8467 or 416-967-7050 if you would like to talk to me about the walk please contact me at toronto@tnac.org. Please contact me if you would like to join us in the walk so I know how many signs we will need. We will be wearing signs saying we have TN and (15% of MS patients have TN). We hope that other chapters across Canada will join us in spirit. If nothing else it will be great exercise and perhaps we will meet some press while walking!

 

Vancouver and Lower Mainland BC

2006 MEETINGS:  The Boardroom, G.F. STRONG REHAB CENTRE, 4255 Laurel St. Vancouver (Laurel at West 26^th – one block East of Oak). TIME: 10.30 am – 1.30 pm DATES:  March 25, May 27, July 29, Sept. 30, Nov. 25

Friends, family and supporters are welcome to attend meetings. For more information or to talk with someone who has TN contact:  Ann Hopkins, Volunteer Coordinator, TN Support Group.  Phone: 604 732 1673 or Email:  annhopkins@shaw.ca

 

 

 

The Trigeminal Neuralgia and Face Pain Handbook By George Weigel and Kenneth F. Casey, M.D. Foreword by Peter J. Janetta, M.D.

Publisher: Trigeminal Neuralgia Association, Gainesville, Florida

Available from the TNAC. There are 7 books remaining at  $40.00 ea. (shipping included). Orders will then be taken for SB book  Price will depend on current value. 

This is an outstanding book. With over 500 pages which answers just about every question on TN. It’s full of useful information & coping strategies. It has comprehensive information on medicines and surgery & goes far beyond the medical strategies & surgical intervention in discussing everything from nutrition to acupuncture & hypnosis. This book is a must for every TN sufferer’s bookshelf. Friends, family & supporters will also find it helpful.

The table of contents below demonstrates the wide ranging nature of the information & discussions that Striking Back contains. The US TN association is to be congratulated on producing such a valuable & wide-ranging reference book.

 

CHAPTER 1: LIKE A LIGHTNING BOLT

Not just an aging disorder. When TN First appears (chart). How the pain behaves. TN snapshot (chart). A quick TN anatomy lesson. What trigeminal nerves do. A TN history lesson. Trigeminal neuralgia in a classic… (box). From bloodletting to boiling water. Surgical breakthroughs. Treating it with medicines.

 

CHAPTER 2: JUST WHAT IS TN ANYWAY?

Where & how TN strikes. How people react to TN pain. How a TN patient appears to others (box). That unforgettable first attack. A warm-up for the real thing. Diagnosis difficulties. Unnecessary treatments. Education & awareness. Diagnosing by description.  10 tips on getting a speedy, accurate face-pain diagnosis (box). Ruling out other problems. Tests the doctors often do. Changes in sensation?  A family connection? Kids with TN.

 

CHAPTER 3: WHAT’S CAUSING THIS TERRIBLE PAIN?

How nerves work. The road to the brain. A sample impulse. Like a phone cable. The trigeminal nerve’s duty. The 12 pairs of cranial nerves (box). What’s going wrong? “Irritable” nerves. The remission cycles. The suspect of aging. Compressions of all kinds. Problems with compressed other nerves (box). Is it always a compression? Tumours & cysts. The “AAA” of anatomy problems.  Some other things that could be causing TN.

 

CHAPTER 4: TN OR NOT TN?  

It must be “atypical?” Sorting out the “atypicals.” A variation on the TN theme. What’s injured… and for how long? When do variations become something else? Changing the names.  TN-1 andTN-2.Trigeminal neuropathic pain. Trigeminal neuropathic pain. Trigeminal deafferentation pain. Postherpetic neuralgia. Symptomatic trigeminal neuralgia. Atypical facial pain.

 

CHAPTER 5: THE DENTAL CONNECTION

How tooth pain factors in. Flushing out tooth problems. The “straw that broke the camel’s back. New pain but not TN. Dental pain & TN. Dental problems to consider.  The “bony-cavity” theory. How NICO happens. The other side of NICO. Fillings as triggers? Dental care with TN. Going to the dentist.

 

CHAPTER 6: OTHER FACE PAINS: NOT TN, NOT DENTAL & IT STILL HURTS

Cluster headache. Cluster tic syndrome. Migraines & facial migraines. Trigeminal neuritis.  Lyme Disease. Glossopharyngeal neuralgia. Geniculate neuralgia. Occipital neuralgia. Vagal/superior laryngeal neuralgia. Sphenopalatine neuralgia. SUNCT 89. Temporomandibular disorders. Myofascial pain. Temporal arteritis. Sinusitis. Chronic paroxysmal hemicrania. Raeder’s paratrgimenial syndrome. Orbital myositis. Tolosa-Hunt syndrome. Lupus and Sjogren’s syndrome. Atypical odontalgia. Burning mouth syndrome. The many faces of face pain (chart).

 

CHAPTER 7: MEDICATIONS FOR FACE PAIN

Anticonvulsants: still the main type. What usually doesn’t work. Finding better anticonvulsants. Beyond anticonvulsants. No “just for TN” drug. The path to medication. Medication’s role in TN. Picking the “right” medicine. Conflicts with other medicines, conditions. How to take TN medications. A dosing schedule (chart). Allergic Reactions. The right dose. Questions to ask when taking a new drug (box). What if the pain is gone? What if the medicine “wears off?” Dealing with side effects. A drug-by-drug rundown. Carbamazepine (Tegretol, Carbatrol). Oxcarbazepine (Trileptal). Gabapentin (Neurontin). Lamotrigine (Lamictal). Topiramate (Topomax). Phenytoin (Dilantin). Levitiracetam (Keppra). Tiagibine (Gabitril). Valproate (Depakite, Depakene). Zonisamide (Zonegram).  Amitriptyline (Elaval). Imipramine (Norfranil, Tofranil). Nortriptyline (Pamelor). Venlafaxine (Effexor). Baclofen (Lioresal). Tizanidine (Zanaflex). Pimozide (Orap). Clonazaepam (Klonopin). Opiods. A look at opioids used for chronic face pain (chart).  Comparing the medications used for TN (chart). Side effects & interactions of TN medications (chart). Compounding: Another way to take medicines. Help paying for TN medications. Seven ways to hold medication costs (box). Pregnancy & TN. Pregnancy risk ratings of TN drugs.

 

CHAPTER 8: IF MEDICINES DON’T HELP

Choices, choices & more choices. When is enough enough? The case for sooner surgery. Is there a time window? CAM options. What de patients want (box)? Making the surgery decision. Need more help deciding what to do (Box)? Wading through the options. Need more help deciding what to do (box)? Which kind of surgery? Average life expectancies (chart). The nature & location of pain. Complications & recurrence. Prior procedures? Which came first…the surgery or the surgeon? Picking the skilled surgeon.  Seeing the cause. Decisions in “atypical: or TN-2 cases. Decisions in multiple sclerosis cases. Decisions in post-herpetic neuralgia cases. Decisions for trigeminal neuropathic & deafferentation pains. No two cases alike. What to do about surprise attacks. Health insurance & disability issues. Comparing the five main TN surgeries.

 

CHAPTER 9: RADIOFREQUENCY LESIONING: Fighting Face Pain with Heat

How it’s done. Radiofrequency’s role in TN. Success rates & recurrences. The possible drawbacks. 

 

CHAPTER 10: GLYCEROL INJECTIONS:  Fighting Face Pain with a Liquid

How it’s done. Glycerol’s role in TN. Success rates & recurrences. The possible drawbacks.

 

CHAPTER 11: BALLOON COMPRESSION: Fighting Face Pain by Squeezing the Nerve

How it’s done. Balloon Compressions role in TN. Success rates & recurrences. The possible drawbacks.

 

CHAPTER 12: RADIOSURGERY: A No-Incision Surgery Using Radiation

The Gamma Knife. Linear accelerators. How Gamma Knife is done. How a linac treatment is done. Radiosurgery’s role in TN. Differences of Radiosurgery. Success rates & recurrence. The possible drawbacks.

 

CHAPTER 13: MICROVASCULAR DECOMPRESSION:  Attacking the root of the problem. 

How MVDs are done. Dealing with the vessels. MVD’s role in TN. Success rates. Pain recurrence. The possible drawbacks. Partial cutting the nerve. A comparative look at surgical success rates (chart). A look at the potential unwanted effects of surgery (chart).

 

CHAPTER 14: IT STILL HURTS… NOW WHAT

Why did surgery fail? What if it worked but the pain comes back? Why pain might come back. Surgery repeats. Which one next? Dealing with surgical complications. Pain & numbness both. Other avenues. “Peripheral” nerve treatments, Neurectomies. Chemical injections. Cryotherapy. Peripheral radiofrequency. If all else fails….The DREZ procedure. Deep brain stimulation. Motor cortex stimulation.

 

CHAPTER 15: NOT SURGERY NOT PILLS: THERAPIES BEYOND MAINSTREAM MEDICINE

Rising CAM trends. Exactly what is CAM? CAM’s roots. Why people are interested in CAM. Who’s using CAM today? How to determine if CAM is right for you (box). The issue of evidence. Why there’s little research. A few other caveats. Worth trying? A closer look at some CAM & other options. Hot-Pepper creams. Local anesthetics. Botox injections. TENS units. Magnet therapy. Low intensity laser therapy. Massage. Herbal therapy &aromatherapy. Craniosacral therapy. Therapeutic Touch/Healing Touch. A quick look at other CAM therapies (chart). Tips on CAM shopping (box.)

 

CHAPTER 16: ACUPUNCTURE FOR FACE PAIN

Understanding acupuncture. Not always needles. Why else might acupuncture work. How well does it work? Side effects & drawbacks. Help finding an acupuncturist (box). Acupuncture’s role in TN.

 

CHAPTER 17: CHIROPRACTIC FOR FACE PAIN

The spine & face-pain connection. Searching for problems. Fixing the misalignments. Success rates. Keeping the pain away. What patients say. What doctors say. Chiropractic’s role in face pain. How to find an upper-cervical chiropractor (box.)

 

CHAPTER 18: NUTRITION THERAPY

Food links to face pain. Pain triggering foods. Two main routes. The “healthy-nerve” diet. Seven guidelines for a healthy diet (box). Nerve related vitamins ad minerals. The role of supplements. Vitamin B-12 & myelin. Nutrition based plans.The Lemoles’ TN program (Chart). Other nutrition & lifestyle efforts. For more information on nutrition and health… (box).  Success, precautions & limits. A few tips on supplement shopping. 

 

CHAPTER 19: TIPS FROM THE VETERANS

Cold compresses. Heat treatments. Hot creams. Menthol creams. Avoid burning eyes. Gum numbing gels. Give the nerve the “cold shoulder.” Eating tips. A nerve-calming tea. Teeth tips. Chew gum. Facial massage. Massage the ears. Chin adjustment. Flex the neck. Clever sleeping strategies. Get proper rest. Set the alarm for nighttime does of medicine. Stay away from face-touching activities. Cover the face outside. Loosen those glasses. Cut out nicotine.  Limit other “stressors.” Prayer. Strenuous exercise. Fresh air? Keep a “pain diary.” Play detective. Prioritize your activities. Avoid vibrations. Avoid bright light. Dry-eye help. Attitude boosters.

 

CHAPTER 20: COPING WITH FACE PAIN

Lots of exams, no answers. TN affects more than just the face. Reacting to the pain. Fighting the mental battles. The depression connection. Eight myths of pain (box). “Willing” the pain away? You don’t have to “learn to live with it.” Coping with sudden pain flare-ups. Relaxation. Mental imagery. Deep breathing exercises (box). Progressive muscle relaxation (box). Hypnosis and self-hypnosis. How to hypnotize yourself (box). Biofeedback. Prayer. Americans’ thoughts on the healing power of prayer. Humor as therapy. How to laugh your pain away (box).

 

CHAPTER 21: HELPING PEOPLE WITH FACE PAIN

Supporters help with coping. How others react. Hard to understand. “I Don’t Get It” poem. Things that don’t help. Things that do help. Walking that fine line. The effect on children. An effective doctor. How to help your TN doctor help you (box). The “burden” on caregivers. A support group for neuralgians. The beginnings on TNA. TNA’s purpose (box). Support makes a difference. How to contact the Trigeminal Neuralgia Association (box). Finding a TN support group (box). Support can add years. Support group by Internet. 18 ways to help a neuralgia in the family (box)

 

CHAPER 22: POSSIBILITIES

A new view of pain. Pain Care Bill of Rights (box). What we’re learning about pain. Regenerating myelin. Medications just for TN. Better delivery of the medicine. New & improved surgery. MVD advances. Stimulating the pain away. Better imaging. More TN education. Lots of hope.

 

CHAPTER 23: HELPFUL LISTS, QUESTIONNAIRES AND OTHER AIDS

Questions to diagnose & treat face pain. Sorting out the exact face pain you’ve got. The McGill Pain Questionnaire. How is pain affecting your life?  Wong-Baker FACES pain Rating Scale. Are you & your doctor on the same page? How are you coping with your face pain? Measures for depression. Understanding medical literature. Navigating for health information online. 15 points to look for in a good surgical study. “Thoughts to Myself” poem.  “Do You Know What I Did Today?” “Tic Douloureux My Darling.”