HEADLINES
VOLUME 6, ISSUE 5
NOVEMBER 2000
November 14th Meeting: Chronic Disease Self-Management
For many participants in the East Bay Headache Support Group, headache is a chronic condition. Whether our head-aches come once a month, or we struggle each day with them, we can all benefit from self-management techniques, which
Aaron W. (Wally) Barger will present to us on November 14, 2000. Join us in the Ball Auditorium at John Muir Medical Center from 7:30 to 9:00 pm. For more information, call (925) 938-5252.Wally is a graduate of the Stanford University Chronic Disease Self-Management Workshop, and is a Certified Master Trainer who has conducted training programs for hundreds of people with various chronic conditions. He is a published author on self-management techniques and chronic diseases.
Diagnosed with rheumatoid arthritis in late 1976, Wally has experienced the ups and downs of the physical and emotional effects of chronic pain. He has endured fourteen surgeries and twenty-two admissions to the hospital for conditions such as pulmonary embolism, total knee replacement (five surgeries), foot reconstruction (both), gallbladder surgery, etc.
With a positive attitude based upon techniques and experiences that have helped him and others, Wally will discuss the scope and nature of the self-management program, and explain how it can be applied to headache sufferers. The discussion will include topics such as pain management, fatigue, fear, anger management, relaxation, managing emotions, communication
skills, and making treatment decisions. Caregivers also are encouraged to attend.Editor’s Note: Check out the Chronic Disease Self-Management Program on Stanford’s Web site: www.stanford.edu/group/perc/cdsmp.html
Long-Acting Opioids as Preventive Medicine for Severe
Headaches
By Lawrence Robbins, M.D., Robbins Headache Clinic, Northbrook, IL; and Assistant Professor of
Neurology, Rush Medical College, Chicago, IL.
Preventive medications help no more than half of patients with chronic daily headache (CDH). The medication options for those whose headaches have not responded to the usual preventives remain limited. Long-acting opioids (drugs related to or derived from opium), taken as preventives several times per day, are one of the "end-of-the-line" options. In my experience, treating 450 severe CDH patients with these opioids, a small number of people (15% to 20%) achieve long-lasting relief, reporting a greatly enhanced quality of life. While the short-acting opioids, like hydrocodone, codeine, meperidine and propoxyphene, often lead to rebound headaches and overuse, these problems are rarely observed with the longer-acting opioids. Of course, prior to utilizing any stronger
therapy, we must be sure that the patient is not experiencing rebound headaches from analgesics.When they are not overused, the opioids are safe medications. The major side effects that lead to discontinuation include constipation, nausea and fatigue. They have not been associated with weight gain, often seen with antidepressants such as the tricyclic antidepressants. When the usual daily preventives do not work, alternatives for patients with severe headaches include the MAO inhibitors, stimulants, daily DHE, or even daily triptans. Each of these has possible side effects. The side effects of even several opioid tablets per day are generally less than those from many other headache preventives.
The doses must be kept low. My patients have averaged daily doses of 40 mg of morphine, 30 mg of oxycodone, and 10 to 15 mg of methadone. These are relatively low doses. It is necessary to achieve a balance between medications and headaches, and to strive not to overmedicate. If a low-to-medium dose decreases the pain by 40% to 80%, we may need to accept this level, keeping in mind that these patients had no relief from other daily headache preventives. Relief of pain by 40% to 80% is enough to greatly improve functioning and quality of life.
Each of the opioids has its pluses and minuses. The longest-lasting form of morphine is Kadian, which lasts 12 to 24 hours in the body. I prescribe this at 20 mg (a low dose) twice per day. Patients often state they do not feel as if they are "on" a medication; they experience no "ups or downs," only pain relief. However, some people do better with MS Contin or Oramorph SR, 15 to 30 mg three times per day. Oxycodone (OxyContin) is generally well tolerated, with pain relief lasting from 6 to 12 hours. Methadone causes more fatigue, and typically more severe withdrawal. However, methadone is the most effective medication for some patients. Despite its original development as a narcotic painkiller, methadone has been widely used to control heroin addiction. So, there is more social stigma associated with being prescribed methadone. On the other hand, methadone is much less expensive than the other long-acting opioids.
Occasionally, the body develops tolerance to the narcotic and the patient needs increasing doses to achieve the same effect. Rather than increase doses, at times we will discontinue the opioid for 1 to 2 months to restore efficacy. Another strategy is to switch to a different opioid. A small number of patients have remained on the same low-dose opioid for many years.
While dependency (needing the medication but continuing on the same dose) is to be expected after continuous use of an opioid, addiction to the long-acting opioids is relatively uncommon. Only 3% to 5% of people will show addictive behaviors. In treating chronic severe pain, dependence has to be accepted, but not addiction. Addictive behaviors include: increasing the dose without discussion with the doctor; seeing multiple physicians for the same medication; obsessing about the supply; calling the physician with phony stories to obtain additional refills; selling or hoarding the drug; or concurrent use of other addictive or illicit drugs. Ongoing drug-seeking behaviors like these label the person as "addicted" to the opioid. Previous addiction to short-acting opioids has proven to be only a mild risk factor for addictive behavior with the longer-acting ones. A number of patients who previously had overused short-acting opioids have done very well on the longer-acting ones, without addiction. Patients on daily opioids require close monitoring by the physician, with office visits every 1 to 2 months.
A few patients have become depressed as a side effect of opioid treatment. It has been controversial and is generally not a good practice to treat depression or anxiety with opioids, because of the risk of addition. However, patients in my practice who have continued on the long-acting opioids for a number of years report less depression and anxiety, along with enhanced quality of life. Most importantly, pain is decreased in these headache sufferers, and they function daily at a much higher level.
For those suffering with severe CDH, the usual treatments often are ineffective. It is not realistic to expect these people to accept no relief. For a small number of patients, the long-acting opioids offer a chance at a greatly enhanced quality of life.
Excerpted from the Summer 2000 issue of Headache, the newsletter of the American Council for Headache Education.)In May 2000 Dr. Stephen Peroutka, Chairman of the World Headache Alliance Internet Review Committee, reviewed more than 1,000 migraine Web sites and ranked them using a system of 100 possible points. He assigned 0-20 points each for content, accuracy, references, and design, and 0-5 points each for author, sponsor, date of last update, and medical dis-
claimer. He noted that a search for "migraine" produced a variable number of sites depending upon the search engine, ranging from 1,391 (Web Crawler) to 102,447 (Northern Light), with an average search yielding more than 30,000 Web-page listings for migraine.
The top ten migraine Web sites as ranked by Dr. Peroutka are:
1.) JAMA Migraine Information Center (85 points) http://www.ama-assn.org/special/migraine/migraine.htm
Excellent overview of migraine that combines news updates, general information and links to other relevant Web sites. A great "first stop" for
any migraine patient.2.) Migraine Diagnosis (85 points) http://www.upstate.edu/neurology/haas/hpmidx.htm
Well-written overview of the migraine for knowledgeable patients. Out- standing visual effects of aura as well as graphical data presentations. Excellent references.
3.) AMA Health Insight: Migraine (80 points) http://www.ama-assn.org/insight/spec_con/migraine/migraine.htm
A well-organized medical overview of migraine.
4.) Ronda’s Migraine Page (80 points) http://www.migrainepage.com
An interesting and successful mix of information from a patient’s perspective and reviewed references to more technical medical sites.
5.) Migraine Awareness Group: A National Understanding for Migraineurs (MAGNUM)
(65 points)
http://www.migraines.org
This site is relatively weak on scientific issues, but it is an excellent starting point for patients with migraine.
6.) Your Migraines: American Council for Headache Education (ACHE) (60
points)
http://www.achenet.org
An excellent site geared to patients interested in headache prevention and treatment. The subsection on migraine is well written but not as easily accessible as it could be. A headache diary and a variety of other patient-oriented information on the general topic of headache are also provided.
7.) Migraines: You are Not Alone (60 points) http://www.geocities.com/HotSprings/Spa/7379/migraine.html
An excellent, wide assortment of information and links for migraine patients. The site could be better organized, but is well worth the effort for the interested migraineur.
8.) Discovery Health: Headaches (55 points) http://www.discoveryhealth.com/DH/ihtIH/WSDSC000/20707/9347/210168.html?d=dmtContent
A subsection of an excellent general headache site focused on migraine.
It is best for individuals who already know their headache diagnosis.9.) Migraine Action Association (55 points) http://www.migraine.org.uk
The home page of the British
To easily get to Dr. Peroutka’s top 10 migraine Web sites, go to http://www.hometown.aol.com/drperoutka/ and link from there. And for a more extensive list of evaluated migraine sites, as well as the criteria used for his evaluation, contact him at: DrPeroutka@aol.com.
Dr. Peroutka recommends using the Google Search Engine to find additional Web sites. He also noted that there are pluses and minuses to having freely accessible information on the Internet: Physicians are seeing more and more patients who are self-diagnosed, and who uncritically accept whatever they may find on the Web and challenge their doctors; and, on the plus side, a number of patients bring in good information they have found on the Internet.
Editor’s Note: Dr. Stephen Peroutka spoke to the East Bay Headache Support
Group at its March 1996 meeting. For notes of his presentation on
"Head-ache and Genetics," go to our Web site: http://www.headachesupport.org/
Your Support Group Needs Your Help
The East Bay Headache Support Group is a nonprofit organization dependent on both monetary donations and volunteer labor. A small group of volunteers organizes the meetings and publishes this newsletter, and our major operating expenses are printing, bulk mail postage, and maintaining our Web site.
What can you do to help?
* Consider making a tax-deductible donation to assist the group with its mission to provide education and support for head-ache sufferers.
* The Planning Committee meets one evening every other month inWalnut Creek and welcomes new members with fresh ideas.
* Write up a personal profile of your struggles and/or successes in dealing with your headaches and submit it for the next newsletter.
Call Leslie Davis at (925) 228-1084 or e-mail ladavis98@aol.com to volunteer.