Posted by Bob Johnson (12.19.49.2) on February 02, 2001 at 07:52:54:
In Reply to: how am I supposed to live with this? posted by Nick on February 01, 2001 at 15:31:32:
You tell us very little about your docs and the other meds which they may tried. However, if they have not tried Imitrex to quickly abort an attack it makes me wonder if this doc is up to date on effective treatments.
Suggest you get Dr. Robbins' book, listed below, and educate yourself and your doc about the range of effective treatments available. Also get Dr. Mathew's article (via your school library) and give to your doc.
After those first steps, then broaden your self-education via some of the web sites listed.
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Cluster Resources--#9
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Posted by Bob Johnson (216.53.226.34) on November 26, 2000 at 15:26:28:
As new folks discover ch.com we see many basic questions appearing about treatment, causes, and so on. The valuable support available here cannot, however, be matched with the breadth of coherently presented medical information which many people need. I want to share material--largely with a medical focus--which has been valuable to me. This list is hardly comprehensive: my criterion for listing is that I return to this material because it's useful.
In all cases, explore both "cluster headache" and "migraine" sections and use both terms when doing searches. Because of the classification system used in medicine, cluster material is often a subsection of migraine material.
If you find this list helpful, please send me your favorites (in a private message) and they could be included in future "editions" of this resource list.
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**** Signals new or revised since previous posting of this material.
WEBSITES
**** www.bash.org.uk For UK folks seeking contacts. Has guideline for diagnosis and treatment but it's less useful/adequate compared to other sources listed here.
**** www.nnlm.nlm.nih.gov/members. For a list of public libraries which have special health resources or medical libraries that are open to the public.
**** www.nlm.nih.gov/medlineplus/libraries.html. Same as preceding.
**** www.medsch.wisc.edu/chslib/hw/altmed. Alternative medicine information.
**** www.medlineplus.gov. The best place to start health searches; The National Library of Medicine--the medical equivalent to the Library of Congress.
HTTP://NEURO-WWW.MGH.HARVARD.EDU/FORUM (Enter at "new forums"). A variety of neurology discussion sites, cluster being one of them. Same format for other medical conditions also. Operated by Mass General Hospital.
www.ZYWORLD.COM/HEADACHEPAINFREE/ Magnesium as a preventive treatment for CH is the main value of this site. It appears that magnesium has been used in Europe for some years for this purpose and I've posted one medical report about using IV magnesium to abort headaches which would not repond to the usual medications. [With thanks to Shawna @ 6/22/00.]
(Vitamin B-2, 400mg/day, has also appeared in the medical literature as a possible preventive treatment: evidence is anecdotal so far but favorable [as of 9/00]. I've been using both B-2 and calcium/vitamin D/magnesium, 500mg, in a combination capsule, and have not had a CH for 22-months.)
www.quackwatch.com This site is not directly related to headache. It contains many articles on a variety of scams, especially around health issues, and how the claims are wrong or misleading. Some introductory articles deal with how our psychology sets us up to be mislead and duped. This vulnerability, which is part of our species, i.e., a trait which we all share, is especially and easily triggered when we are faced with a personal crisis--cancer, chronic and disabling diseases, and so on. But being aware affords some protection against "being taken".
www.HEADACHEDRUGS.COM. Perhaps the best single site; operated by M.D. who runs a headache clinic. Site has been changed significantly and now has two new sections of interest: a search function and a screen to ask Dr. Robbins a question.
www.HEADACHECARE.COM. Brief articles; a diagnostic test; a physician finder; breaking news reports.
www.AMA-ASSN.ORG. American Medical Association. Select "migraine" at bottom of home page and explore several sub-sections; covers CH and migraine.
www.NOAH.CUNY.EDU/headache/headache.html. This is a directory of links grouped by many headache topics.
www.LIB.UIOWA.EDU/HARDIN/MD/ Hardin Meta Directory of Internet Health Sources. This is a deep, multi layered directory to medical sites grouped by speciality. Most of the sites require some background/understanding of medicine, biology, and so on but, like MEDLINE, it's an excellent resource.
www. PSLGROUP.COM/docguide.htm. Doctor's Guide to the Internet. Select "migraine" and you get breaking news on all forms of headache. Explore the buttons which link to other websites, organizations, etc. It has just been reorganized and offers more links but at the price of being a bit more time consuming to navigate but has the edge as a source of breaking news.
www.MEDSCAPE.COM. Professionally oriented site which is of greatest benefit if you have some medical vocabulary but should not be avoided, in any case. Free, initial registration required. Look for links on the Neurology page. Use the search box (bottom) and enter "headache", then select "all dates" on the next page. Some excellent articles on diagnosis and medical treatment.
www.EMEDICINE.COM. Search under "cluster headache".
www.NEUROLAND.COM. Professional and patient sections; explore both. Especially for information on drugs, dosing, etc. Some links.
www.UPSTATE.EDU/HAASD/INDEX.HTML Brief introductory level material and treatment information.
www.MAYOHEALTH.ORG. Search using "cluster headache".
www.INTELIHEALTH.COM. Johns Hopkins hospitals. ~
www.HEADACHES.ORG. National Headache Foundation; educational group with limited articles. (See also under finding a physician.)
http://AHSNET.ORG. American Headache Society. Patient information button on left has some good material. You can explore the contents of the professional journal which they publish.
www.MELDRUM.DEMON.CO.UK/migraine. At bottom of home page, look for FAQ on clusters: four sections of extensive material; strong on treatment options.
http://DIETARY-SUPPLEMENTS.INFO.NIH.GOV. The name tells you what's there.
www.INTERACTIONREPORT.ORG. A new site which plans to report, "...(B)alanced and authoritative information on drug-herb and drug-nutrient interactions and adverse reactions involving herbs and nutritional supplements." You can ask questions about interaction concerns.
www.ACHENET.ORG American Council for Headache Education. Appears focused on migraine but searching pays off; the search function under "Headache Resources" pulls up material on cluster by entering "cluster headache".
MEDICATION INFORMATION
**** www.nlm.nih.gov/medlineplus/druginformatioin.html
**** http://calder.med.miami.edu/catalog/subject/pharmacology_and_toxicology.html In addition to medication data you will find a number of other medical information sources.
HTTP://CPONLINE.GSM.COM I've come to like this one better than the others listed although it's more difficult to navigate.
http://PHARMINFO.COM.
www.RXLIST.COM
www.SAFEMEDICATION.COM General information about prescription medications.
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ARTICLES FROM MEDICAL JOURNALS. They can often be found in the medical library of a large hospital or the public library can obtain at little or no cost. In either case, take all the information provided here in order to locate. If you are working with a doctor who has little experience with CH these are the materials you want to get and give!
We all fuss about the lack of research on CH compared to migraine, and be right in doing so. The reality, however, is that the money goes where the need is and clusterheads are (may we be grateful?) in a distinct minority. I'm listing this information because it represents an extraordinary compilation and review on research on the treatment of migraine--ABORTIVE & PREVENTATIVE MEDICATIONS, AND NONMEDICAL TREATMENTS. For those who are seriously into medical information, this material may lead to a more rational selection of treatments. Go to: www.aan.com (Americn Academy of Neurology) or www.neurology.org; look for button on "guidelines". Be prepared: the section on abortive MEDS. alone is 58-pages!
"Cluster headache", Au. Ninan T. Mathew, MD, NEUROLOGY, 42 (Suppl 2), March 1992. I believe the best single article to give to your doc around questions of diagnosis and treatment.
"Management of cluster headache:an American view", Au: Lee Kudrow, MD, HEADACHE QUARTERLY, 1:1 (57-63), 1990. Somewhat dated but most of the information still relevant.
"Treatment of cluster headache in Europe", Au. Karl Ekbom, MD; HEADACHE QUARTERLY, 1:1 (65-70), 1990. Ekbom is one of the big names in European research.
"Prophylactic therapy of cluster headache", Au: Seymour Solomon, MD, CLINICAL NEUROPHARMACOLOGY, V.14, #2, 116-130, 1991.
Re. special needs of women. Both of these in HEADACHE QUARTERLY, Vol X, #2, 1991: "Women and headaches:a comprehensive approach", p. 31-36. "Special considerations in the management of headache in women", p. 37-43. The last one focuses on role of hormones in headache and how medications must be altered.
Rebound headaches. "Rebound Headaches--A Review", Au. John S. Warner, M.D., in HEADACHE QUARTERLY, 10:3(1999). (There is some confusion on the board about the meaning of "rebound". There appears to be an emerging consensus in the medical literature to define "rebound" as a headache which is caused by the overuse of any medication used to abort a headache or relieve pain. "Recurrence" [of a headache] is being used to refer to the redevelopment of an attack when its "normal" duration is longer than the useful life of the medication which has been taken. That is, the medication effectiveness is reducing before the headache has come to an end; the pain redevelops.)
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BOOKS
Doing a search using "headache" on Amazon.com will get you 200+ titles! Seymour Diamond, MD, has a new title aimed at the patient; L. Robbins, MD has a new edition for physicians (see www.headachedrugs.com) and a consumer oriented edition containing much of the same material. But this long list is worth exploring--with care and selectivity.
There are many others available but often high priced. I've listed a few at reasonable price.
HANDBOOK OF HEADACHE, Ninan T. Mathew, M.D. & Randolph W. Evans. Suggest that you do NOT buy this one. As much as I appreciate Mathew's writings on CH this volume is only for physicians or people deeply steeped in medical knowledge.
TAKING CONTROL OF YOUR HEADACHE, revised ed, Paul Duckro, et al, The Guilford Press. Aimed at patients and includes a strong focus on the value of stress/cognitive control in addition to medical treatment.
HANDBOOK OF HEADACHE MANAGEMENT, 2nd ed., Au. Joel Saper, MD, 1999, Lippincott Williams & Wilkins. A highly condensed volume for doctors but good for "advanced" clusterheads who have a grasp of medical terminology and medications. Covers all types of headache with the section on cluster being brief. Sections on general considerations in treatment and on medications are important.
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
MIGRAINES AND OTHER HEADACHES, James W. Lance, M.D. (ca. $12 at Amazon) [Recommended by Geo, on 9/4/00.]
On stress control/cognitive therapy: see message at 8/31/99, "cognitive therapy".
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PHYSICIANS--LOCATING HEADACHE SPECIALISTS
The National Headache Foundation, 1/888-643-5552, will send a list of doctors, by state, who have self-identified themselves as being interested and experienced in treating headache.
I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.
www.HEADACHECARE.COM. See physician finder; limited listings.
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INSENSITIVE DOCTORS--dealing with
Some personal thoughts posted on 1/18/00.
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HMO/MANAGED CARE PROBLEMS
See message at 1/18/00, "Dealing with managed care" and,
"If HMO/insurance won't cover treatment", at 12/06/99.
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