Drug of the Month

Uses: Toradol is used to treat moderate pain for short term use (usually less than 5 days). It works by reducing body chemicals that cause inflammation, swelling and pain. In hospitals, Toradol is available in an injectable form. It has been used in conjunction with IV Dilantin 'drip' during painful bouts of TN pain. It can also be used for pain associated with muscle sprains, dental pain and pain after surgery.

Warnings/ Precautions: Tell your doctor if you have any drug allergies, especially any undesired reactions to Toradol, ASA, voltaren, Ansaid, Motrin, Indocin, Orudis, Naproxen, Feldene or Clinoril. It is important to tell your doctor what other medications you are taking, especially blood thinners, ASA or other medications used for pain or inflammation. Discuss with your doctor any medical problems especially: a history of stomach/ intestinal problems, diabetes, kidney disease, high blood pressure, a history of bleeding problems or stroke. Older adults are generally more sensitive to the effects of this drug and may experience stomach problems, a decrease in urine output or swelling in the face or lower legs & feet. Also, many medications take longer to be eliminated from the body in older adults than in young adults. In pregnancy Toradol has been shown to cross into the placenta; and does pass into breast milk.

Adverse Effects: Toradol has adverse effects that can be dangerous. These increase with the dose and length of treatment. Contact your doctor immediately and stop taking the medication if you experience: an allergic reaction (hives, swelling of lips/ tongue, difficulty breathing or closing of the throat), bleeding from the rectum (or black stools if not on iron supplements), vomiting blood (or what appears like coffee grounds), dark or cloudy urine, lower back or side pain, a sudden decrease in the amount of urine, or pain while urinating. Also, chest pain, blue lips/ fingernails, fainting, jaundice, convulsions, severe restlessness, or hallucinations. A common side effect from NSAIDS -- nonsteroidal anti-inflammatory drugs is mild to moderate stomach upset and this can be decreased by taking the medication with meals

or milk. Sometimes headache, drowsiness and mild dizziness can occur and these effects may go away as your body gets used to the medication. ***This is not a complete list of all possible side effects. Check with your doctor or pharmacist if you have any concerns regarding unusual effects while on this (or other) medication.

Dosage/ how it is taken: The usual adult dose is 10 mg. every 4 to 6 hours given 4 times a day with a maximum dose of 40 mg. per day. It is recommended for short term use (5 days or less). The lowest dose required to control pain should only be used. Toradol comes in 10 mg. tablets and is available in hospitals as an injection.

** 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.

Join us for the TNA 6th National Conference, held in Portland, Oregon from September 14 to 16, 2006. To learn more about the conference and to register online, go here: http://www.tna-support.org/newlook/conference_files/Conference6/introduction.htm. Please let us know if you have questions. I look forward to seeing you in September!

I received this via Kathy Somers, from the UK Trigeminal Neuralgia Association. Unfortunately it was received too late to run in our April issue. I have edited it a little by removing details of sending sponsorship money as the event has already taken place. I thought you might be interested though to see how others are trying to raise money for TN organizations around the world.

I hope you don't mind me sending you this email but we have had a wonderful last minute sponsorship opportunity from a young lady running in the London Marathon on the 23rd April. She has very kindly offered to run in aid of the Trigeminal Neuralgia Association UK and we are desperately keen to let everyone know about it. Her name is Emma Jones and you can find out more about her and how to sponsor her by visiting www.rsbproductions.co.uk/emma. You can also email her from that site to let her know of your support which will give her tremendous encouragement, and I know you'll join me in wishing her every success. Thank you for reading this and for your support.

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

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.

I am just out of the hospital and am reading the package for new members and the TNAC newsletter Mar. 06. I spotted the opportunity to ask questions of Dr. Kaufmann.

The 1997 MVD failed because of problems with the Dura and complex routing to the compression site.

My first Gl. Ryz. resulted in a few crackly TN pains within hours then none for 7 years. This last one (Mar. 9) was very different. OK for that day and night. Monster full blown continuous attack the next morning for a few hours. Back to almost nothing for 3 days then big shots under moustache and up into cheek. Quiet unless triggered by chewing. I am down 10 lbs. so I muster strength, fire up the intense cheek pain and eat as normal as possible. It burns away but slowly subsides and stops when I stop. I mop up the tears and a drippy nose, job done till the next meal.

Question: Will this stay like this, or reduce, or get worse? I will soon have to leave the sanctuary of home and planning activities depends so much on this pain situation.

Question: If it continues or worsens, what next? (Tegretol @ 900 mg. through this last Ryz.)

Thank you for your recent question, which I would be happy to answer as follows.

I often see people with recurrent pain after Rhizotomy procedures, which fail eventually in about one half of patients. This recurrent TN is expected to become more severe and frequent over time. Additional medications may be tried, although dose related side effects are often very problematic. When it is decided to pursue further surgery, the options of rhizotomies and microvascular decompressions (MVD) are again considered. Repeat "needle rhizotomies" (glycerol, balloon compression, radiofrequency) can provide rapid pain relief, provided prior procedures have not caused excessive numbness or complications such as major "nerve injury pain". If less urgent pain relief is acceptable, Radiosurgery rhizotomy (ie: Gamma Knife) can be considered. The option of MVD also deserves special consideration. In this gentleman's case, the prior MVD appeared to have been unsuccessful for technical reasons. This poses a difficult dilemma; if the first MVD was performed optimally there may be little to be gained in repeating it. However, in the majority of "redo MVD's" I have done, we find significant neurovascular compression that can be successfully alleviated. While MVD surgery has a greatest potential to provide immediate relief and cure TN and with extremely low risk of complications, it is also the procedure most dependent upon individual neurosurgeon experience and expertise with this unique operation.

For this patient, " what to do next?" is consult with 1 or more specialists to discuss the various medical and surgical management options, recognizing there is a good chance this recurrent TN can be successfully treated.

Kristin Benoit, Secretary to
Anthony M. Kaufmann, MD, MSc, BSc (Med) FRCSC
Associate Professor, University of Manitoba (Neurosurgery)
Director, Centre for Cranial Nerve Disorders
Co-Director, Centre for Cerebrovascular Disease
Co-Director, Winnipeg Centre for Gamma Knife Surgery
GB-137, 820 Sherbrook Street, Health Sciences Centre
Winnipeg, Manitoba, Canada R3A 1R9

Sandra Arangio- Markham, On, Joan Robinson, Moncton, NB and Margurite Devos - Sarnia, On, have now been added to our Telephone Contact Persons List. Welcome Aboard the TNAC Express.

I am out of Striking Back Books, but have ordered another 15. I don't know what the cost will be but I will let you know. If you wish to purchase a book, please let me (address below) know and I will put your name on the list. We are selling these books at cost plus shipping and handling, so our TN members are getting a good deal.

Congratulations to Rene Rogers, Comox BC, who had a successful MVD operation on his birthday, April 25th, 2006, at the Vancouver General Hospital. Wishing you all the best Rene.

Lethbridge, Alberta

The next meeting will be on 2 pm Saturday, May 13, 2006 at the Lethbridge Senior Centre, 500 – 11^th Street, South, Lethbridge.

We meet the last Saturday of the month at 2 pm at the MacLeod Trail Co-Op Community Room. 8818 MacLeod Trail South, Calgary. Meetings are open to everyone with an interest in TN. The next meetings will be:

Some of our members have found some relief and help with Reiki. On May 27 we will be joined by a Reiki Master, Deb Schneider who will explain how Reiki can help those people with TN. Come prepared to ask lots of questions.

April 29, 2006 was a good meeting - thanks to the participation of everyone who attended. Welcome to the new members.

Garage Sale
We will plan a garage sale to raise money for the Calgary TN group some time this spring. Jan is looking for a garage we can use - if you can open your garage for the sale - please contact me. We would need it for two days - Friday to set up and Saturday for the sale. Helpers for the sale will also be required.

MS Walk-a-thon
We will enter a team in the Calgary MS Walk scheduled for June 4th. You can join the team and walk 5, 10 or 15 km. Or - you can participate by sponsoring the team. All funds raised go towards the Multiple Sclerosis Society of Canada. For those that do not wish to walk but who are willing to make a pledge it can be done on-line www.mssociety.ca follow the link to “Pledge a Walker”. Our Team is TNAC Calgary. People could also make the pledge under my name too. Anyone can join the team and walk with us.

TNA's Sixth National Conference will be held in Portland Oregon on Sept 14-16, 2006. If you are interested in attending and want a copy of the brochure, contact Jan.

Group Finances - we are doing really well with our financial picture. Thank you everyone who has been so generous. Remember if you want your TN donation to go to a particular group then you must indicate that on the front of the check - use the "memo" line.

Next meeting - May 27, 2006.
We may change the meeting location to make it easier for those folks who have trouble getting up and down the stairs. Watch for the updates. We will have a Reiki Master as a guest at this meeting.

Next Meeting will be Saturday May 27 at the Boardroom, G.F. Strong, 4255 Laurel (Laurel at 26th). Time will be from 10.30 - 1.30 pm. Speaker will be Dr. Malcolm Kennedy and he will speak about Botox Treatments for Facial Pain Disorders. Dr. Kennedy will speak for about an hour after which we will have our regular meeting and social.

This week Rene Rogers underwent MVD surgery, done by Dr. Honey at VGH. I'd like to thank our awesome support group who phoned me at the hotel to offer their support, encouragement and prayers. A big, special thank-you to Ann Hopkins, Shahita (I hope I spelled your name right) and Marion Guzik. Your kind words helped ease my anxiety while Rene underwent the surgery. Words cannot express my gratitude enough to Dr, Honey for giving Rene one amazing birthday present! Yes, only someone suffering with TN would consider "a hole in the head" as a gift. Rene is beginning his recovery and no TN pain! My heartfelt thanks to you all. Pat R.

Contact: Ann Hopkins, Volunteer Coordinator, TN Support Group. Phone: 604 732 1673 or Email: annhopkins@shaw.ca

Toronto Chapter Next meeting: Sunday April 30/06, Sunday May 28/06 at Thornhill Community Centre, 7755 Bayview Ave Thornhill, Ont. 9:30 a.m. Please bring a family member or friend for support. You do not have to be a member of the TNAC to attend meetings. Sandra Arangio and Kathy Somers look forward to meeting you.

Sandra Arangio, Didi Berger, Valerie Brooks and some members of our families, and friends walked last Sunday in the MS walkathon. It wasn't a sunny day but it didn't rain, and the wind was pretty good. We would like to thank our families and friends for their support.

To all of you that have made a donation to to Toronto Chapter we thank you for supporting us and remembering us.

Nov. ’89 - Sharp pain seemingly in roots of upper molars. Dentist suggested TN & family GP agreed.

Dec.’89 - Neurologist tests to discount other causes. TN confirmed. Tegretol 400 mg/day

1990 - Trigger locations increasing, Tegretol 800 mg/day. Pains increasing to brutal sharpness, good times down to 400 mg. Never free of triggerable pain.

1991 thru 1995 - Learned to avoid some trigger activity. Very challenging. Location & quantity of trigger points spreading. Interesting pattern formed – one dominate set of triggers would last +/-3 weeks then ease back while a new set would kick in +/- 3weeks, sometimes overlapping. On & on & on etc. Tegretol running 1000mg/day with sessions needing 1200/1300. Unprovoked sessions (brutal) growing longer from seconds to minutes. The odd one up to 20 min. Wow.

1995/1996 - Winter horrible. Unprovoked sessions common & difficult to avoid. Tegretol up & down 1000 to 1400 mg/day. 1996 spring, worst was 60/65 min. continuous. Tegretol 1200 mg/day. First time ever (milder weather?) reduction to trigger only, still very painful, but no continuous sessions (back to lightning strikes) everyday. Tegretol 1000 mg/day.

1996/1997 - Winter, back to the biggies. Trigger settled in upper lip especially savage

(lost 8 lbs. in 2 weeks). Tegretol 1300/1400 mg/day. 1997 Spring first ever distinct change – Reduction in long sessions. No more unprovoked pain, just strong jabs. Things bounced around, big blasts returned, tried Baclofen then Neurontin with Tegretol (got Tegretol down to 800 mg for a few days.

November 1997 - St. Michael’s Hospital in Toronto – Attempted MVD but failed due to complications cutting through the dura & route to compression site unusually complex. Situation life threatening so surgeon stopped and closed.

September 1998 - St. Michael’s Hospital, Glycerol Rhizotomy – 100% successful. No pain, slowly weaned off Tegretol.

1998 thru 2006 - Time out for seven & a bit years. No pain, No drugs. Feel normal, so we lived fast thoroughly knowing it will not last. Seven+ years is much longer than average.

February 2006 - Back in the barrel YUK! Slowly returned but grew to be huge with much unprovoked long term blasts. They put me in local hospital, quickly ramped up tegretol & tried to smother the pain with morphine (which does not work) while waiting for date for another glycerol procedure.

March 9th, 2006 - St. Michael’s Hospital, Glycerol Rhizotomy # 2. Gave next to 100% relief for a few hours & then the whole system went wild for a few hours with worst ever unprovoked pain then settled to mild flash in cheek. Stayed this way for three days and cheek/lip developed very strong pain, easily triggered into prolonged blasts if I chew. Tegretol 900 mg/day.

The day after my last GL. Rhz. I suffered a couple of hours of very intense TN pain. Then all was quiet except for tiny flick in cheek/lip for 5 days. Day 6 a very strong TN in the same area made eating & talking extremely painful. This lasted 4 days, then I noticed it diminishing tegretol 900 mg). A few days later it was gone, back to tiny flicks, so now I am slowly reducing tegretol. That is where it is today & if anything significant happens, I will keep you informed.

Today I am a happy guy except for the dark cloud. My neurosurgeon is reluctant to offer opinions on how this will play out & has suggest I not remove the feeding tube in my stomach just in case - Oh Oh!

This is where it is at the time of writing. I do not know if it will diminish (hope so) or stay or increase. I can drink with a straw, slip soft food down the good side (sometimes). Regular food requires courage. The first bite fires it up very painfully but I keep shoveling it in & chewing, as I keep this up it continues but eases to the point I can tolerate it and pretend it is not there (Ho Ho). When I stop, it stops whew! Mop up the tears, blow nose, job done till the next meal. That’s it to date. Oops, I see I was not as brief as I wanted to be.

Please if you haven’t done so already; send in your Election Nomination forms. The Election is coming up fast and we need the names as soon as possible. The forms were included in the last issue of the TN News and you may snail mail them to:

Pat Rogers sent me a list of “words of advice” from the famous Will Rogers. I wanted to pass one of them on to you.

“After eating an entire bull, a mountain lion felt so good he started roaring. He kept it up until a hunter came along and shot him.”

Why do people pay to go up tall buildings and then put money in binoculars to look at things on the ground?

Here it is the beginning of May already. It’s hard to believe just how quickly this year is flying by. My grandson said to me last week – “Hey Gramma, I have my list all ready for what I would like for Christmas if you want it.” Wow! Here I am trying to plan my summer holiday still and he’s giving me his Christmas list!

Please send me your comments, questions, stories, etc. You may either snail mail to: Editor, TN News, P.O. Box 973, Coaldale, AB, T1M 1M8 or email to editor@tnac.org. Thanks everyone.

Drug of the Month

TNA CONFERENCE

Trigeminal Neuralgia UK Newsletter

Letters

Ask the Doctor

Marion’s Desk

Member’s News

Support Group News

Lethbridge, Alberta

MEMBER’S TN HISTORY

Patty’s Ponderings & Miscellaneous Ramblings