Trigeminal neuralgia association

TRIGEMINAL NEURALGIA ASSOCIATION
TEXAS SUPPORT GROUPS NEWSLETTER
JANUARY 2006
TNA REGIONAL CONFERENCE – DALLAS, TX
If you plan on attending the TNA one-day Regional Conference at UT Southwestern Medical Center in Dallas on Saturday, February 18, 2006, please make sure to register in advance. You can register or by calling Shelly Wilson at 817-416-7202. If you live in the Waco area and need transportation to and from the TNA Regional Conference, Mary Ann Lippe has looked into group transportation rates on the STREAK. If you are interested, please call Mary Ann at 254-857-9166 by January 14. HOUSTON SUPPORT GROUP MEETING – DIFFERENT LOCATION
A Houston Support Group meeting will be held on Saturday, January 7, at 10:00 a.m. at
the West Houston Doctors’ Center, adjacent to West Houston Medical Center, 12121
Richmond Avenue, Suite 305, Houston, TX 77082. Doctors’ Center is west on
Richmond from Beltway 8 between Kirkwood Drive and Dairy Ashford.
NEED HELP WITH REVIEWING MEDICARE PRESCRIPTION DRUG PLANS?
Go to t your individual information including medications and dosages you are currently taking. Drug plans available in your county will then be summarized for you and even allow you enroll on-line. TEGRETOL & ERYTHROMYCIN
On the first page of the book called “Best Pills/Worst Pills”, it lists fourteen pairs of drugs which can cause life-threatening reactions if used together. Tegretol and Erythromycin was a pair on this list. Thank you Ramona for sharing this information with us! Disclaimer: This newsletter is not intended to diagnose, prescribe, or to replace the service of your physician, but solely to give you information to help enable you to make informed decisions about your care. REQUEST FOR E-MAIL ADDRESSES
We presently have 1,169 people receiving our newsletter. If you have an e-mail address where we can send you this newsletter and our meeting schedule, please e-mail Shelly Wilson at to help us save on mailing and copying costs. Also, if you change your e-mail address, make sure to advise Shelly as well. Thanks! FEEDBACK ON LYRICA
There is a new anti-seizure medication available to facial pain patients in the U.S. The prescription drug is called Lyrica and it is manufactured by Pfizer. If you are currently taking Neurontin and want to switch to Lyrica, Dr. Krusz, a North Dallas neurologist, said you will need to take ¼ to 1/5 of the milligram dosage of Neurontin of Lyrica. For example, if you are taking 2400 mg of Neurontin a day, your physician may prescribe you 600 mg of Lyrica per day. You will probably be directed to take 300 mg, 2 times a day of Lyrica. Nola’s doctor gave her samples of Lyrica to take which helped relieve TN pain. She is taking 50 mg in the morning and 75 mg at bedtime. However, due to Lyrica’s price, Nola may switch back to Neurontin. Tanya’s TN pain was increasing and the medications she was taking weren’t handling her pain like they used to so her neurologist prescribed Lyrica for her. She took it for three days and broke out in a rash that ended up being all over her body, some places even had blisters. Apparently, she had a very bad allergic reaction to Lyrica because she also ran a pretty high fever, 101-102, and had muscle pain. It took her a week to recover with a steroid pack from her primary care doctor. So, needless to say, she didn’t take the Lyrica long enough to know if it had any benefits for the pain. It was also the most expensive “tier” on her prescription plan which cost her $50 for one month. Pat is taking Lyrica, 2-3 times a day, totaling 300 mg a day. It is helping with her pain but she is still is having some breakthrough pain. She’s hoping it will continue to help her so she can get off of Topomax and some other medications. Christina was having success with Neurontin and followed the advice of her doctor and switched to Lyrica which made her pain worse. As soon as she changed back to Neurontin, the pain went away. (She is actually taking the generic of Neurontin called Gabapentin.) Kendall from Seattle, WA saw our newsletter on-line as he was searching for information about TN and Lyrica. He was diagnosed about 2 months ago. He had no response to Gabapentin and negative side effects from Carbamazepine. He’s been on Lyrica for 3-4 weeks now and so far, so good. Currently, he is taking 200 mg., 2 times a day. He sleeps very well but often falls asleep early in the evening if he stops moving. To offset the Disclaimer: This newsletter is not intended to diagnose, prescribe, or to replace the service of your physician, but solely to give you information to help enable you to make informed decisions about your care. sleepiness at work, he moves around frequently. He’s had only minimal difficulties with concentration. He’s pleased with the medication! He thinks it is great to be pain free! Zo is taking Lyrica and it is the best thing that has worked for her to date. Previously, she took Neurontin for two years and it didn’t do more than take a bit of the edge off of the pain. If you have tried Lyrica, please e-ma or mail a note to Shelly Wilson, 604 Aberdeen Way, Southlake, TX 76092 and we’ll include it in an upcoming newsletter. CALL FOR VOLUNTEERS
We need a new East Texas Support Group Leader. Please don’t let this support group die! If you are interested in taking over this role or are willing to become a co-support group leader for East Texas, please let Shelly know either by e-mail at CYMBALTA FEEDBACK
Donna recently moved and went to a new neurologist who prescribed just Cymbalta for her face pain. Unfortunately, the Cymbalta made her terribly nauseated and her whole digestive system seemed in spasm. The Cymbalta did not help her face pain. Joan mentioned she also tried Cymbalta in combination with her other TN medications and it made her nauseated for a day or so. Joan also experienced some sleeplessness and other side effects. It did not help Joan either. TN QUESTION AND ANSWER
Question: A TN supporter asked a pharmacist if adding Cymbalta, an anti-depressant, to
anti-seizure medicine being taken for Trigeminal Neuralgia would help. She was advised
that patients taking Cymbalta have suicidal tendencies.
Answer: Howard Biel, R.Ph., a compounding pharmacist with ReCept Pharmacy in
Waco provided us with a website that lists the new warning attached to all of the newer
classes of anti-depressants as it relates to suicidal tendencies:
On October 15, 2004, the Food and Drug Administration directed pharmaceutical companies to label all antidepressant medications distributed in the U.S. with a black box warning that the medications ".increase the risk of suicidal thinking and behavior (suicidality) in children and adolescents with major depressive disorder (MDD) or other psychiatric disorders." The warning states that the increased risk of suicidal thinking and/or behavior in a small proportion of children and adolescents is most likely to occur Disclaimer: This newsletter is not intended to diagnose, prescribe, or to replace the service of your physician, but solely to give you information to help enable you to make informed decisions about your care. during the early phases of treatment. The FDA did not prohibit use of the medications in youth, but called on physicians and parents to closely monitor children and adolescents who are taking antidepressants for a worsening in symptoms of depression or unusual changes in behavior. What prompted the FDA warning? In 2004, the FDA reviewed 23 clinical trials
involving more than 4,300 child and adolescent patients who received any of nine
different antidepressant medications. No suicides occurred in any of these studies.
Most of the studies that the FDA examined used two measures to assess suicidal thinking
and behavior.
Which medications will carry the warning label?
DO YOU MISS EATING APPLES?
If you have TN pain in your middle or lower branch of the trigeminal nerve (the two most common branches where TN patients experience pain), you may not be eating as many apples as you used to prior to having TN. Ramona’s daughter cut up apple slices and sprinkled them with lime juice to see if by softening them, her Mom could eat the apple. When Ramona ate the apple, it was so tender, it did not cause her to have jabbing pain. Disclaimer: This newsletter is not intended to diagnose, prescribe, or to replace the service of your physician, but solely to give you information to help enable you to make informed decisions about your care. To make the lime a little milder, Ramona put the apple slices in a jar with a light pear juice which Ramona thinks then tasted delicious! You might want to try Ramona’s recipe the next time you want to eat an apple. UPDATES FROM OUR MEMBERS
Jerry got approved for social security disability, the first time he filed for it. Hurray! Linda had a microvascular decompression surgery (MVD) in December 2003 by Dr. Jonathan White at UT Southwestern in Dallas and continues to be pain-free and medication free. Joan’s been pain-free since May 29, 2004 when she had a radiofrequency rhizotomy by Dr. Phil Williams, Jr. in Dallas. She’s also off of all of her TN medication. Yeah! Patty, one of our long distance support group members living in Illinois, continues to do well with her motor cortex stimulator. She will be seeing Dr. Rosenow in Illinois to have it adjusted. Ronnie continues to be pain-free from his MVD by Dr. White and thankful for the help he received from TNA. His thoughts and prayers are with the TN patients he reads about in our newsletter. Dr. John Claude Krusz, Ph.D., M.D., a neurologist who is in private practice in North Dallas, reported he recently had success treating a TN patient, who had just come off of an eight year TN remission period, with IV Keppra. Betty has been able to cut her TN medication dosage in half. Frank suffered with TN for 12 years before having a MVD by Dr. Catterini at Plano Medical Center in October. He’s got some numbness in half of his tongue and on part of his lip which he has been told may go away. He’s feeling great and enjoying retirement. Larry’s still hanging in there with atypical facial pain, only dealing with occasional minor pain. Since his in-laws just stopped driving, it has been difficult for him to learn how to say “no” to them when he can’t do something for them due to his pain. Please pray for: • Lillian who’s MVD did not work so she is considering other surgical options to • Nola and Michelle who have filed for disability. Let’s hope they get approved on • Pat who’s son was in rollover car accident which has increased her stress and TN • Cal who is having blood platelet trouble as a result of taking Tegretol. Disclaimer: This newsletter is not intended to diagnose, prescribe, or to replace the service of your physician, but solely to give you information to help enable you to make informed decisions about your care. If you would like to share an update with our group, please let Shelly Wilson know. or a written note to 604 Aberdeen Way, Southlake, TX 76092. FUTURE MEETING DATES
Austin – T.B.A.
Dallas at UT Southwestern Medical Center – Regional Conference – 2/18
Fort Worth at Baylor All Saints – T.B.A.
Houston – 1/7
San Antonio – 1/10, 2/14, 3/14, 4/11, 5/9, 6/13, 7/11, 8/8, 9/12, 10/10, 11/14, 12/12
Tyler – T.B.A.
Waco at Hillcrest Baptist Medical Center – 1/9, 3/13, 5/8, 7/10, 9/11, 11/13
TREASURER’S REPORT – NORTH CENTRAL EAST TEXAS

Beginning
11/28/05
$2857.72
Donations
Received
$1996.50
Postage 157.78
Supplies 117.46
Total Expenses
12/31/05
$4422.33
FINANCIAL CONTRIBUTIONS
Local TNA chapters do not receive funding from the national office. If you would like your tax-deductible contribution to go toward your local Texas chapter, please make your check payable to the order of Trigeminal Neuralgia Association and in the memo field put the name of your support group (i.e. North Central Texas chapter, Houston chapter) then mail it to Shelly Wilson, 604 Aberdeen Way, Southlake, TX 76092 for processing. Please remember to also support the efforts of the Trigeminal Neuralgia Association’s national office. Typically, they are the first ones to make contact with new TN sufferers. They provide us with convention materials, run the national website, promote research, and a host of other activities. 2801 SW Archer Rd., Gainesville, FL 32608 Disclaimer: This newsletter is not intended to diagnose, prescribe, or to replace the service of your physician, but solely to give you information to help enable you to make informed decisions about your care. Disclaimer: This newsletter is not intended to diagnose, prescribe, or to replace the
service of your physician, but solely to give you information to help enable you to
make informed decisions about your care.
Disclaimer: This newsletter is not intended to diagnose, prescribe, or to replace the service of your physician, but solely to give you information to help enable you to make informed decisions about your care.

Source: http://texastna.org/jan2006.pdf