Cluster Resources--#16

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Posted by Bob Johnson ( on December 20, 2001 at 10:24:09:

As new folks discover 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.

**** Signals new or revised since previous posting of this material.


NEW ENGLAND JOURNAL OF MEDICINE is one of the premier medical journals. It has just become available for limited free searches and is worth exploring for folks with a serious interest in medicine. As with all of the medical sites listed here, it assumes some working knowledge of medical terminology and, more importantly, an understanding of scientific methodology and how to interpret the data which one finds.
For an access chart that provides information:

WWW.HEALTHINSURANCEINFO.NET --see under HMO/managed care/insurance

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.


HTTP://HEALTHWEB.ORG/BROWSE.CFM?SUBJECTID=24. This is change in address. Delete: www.medsch.wisc/edu, etc. 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. This page was created for folks who do not have a background in medicine. It has sections on: health topics/conditions; drug information; dictionaries; and links to other resources.

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.HEADACHEPAINFREE.COM The content of this site has been expanded since I first posted it. It now covers several types of headache and a more general coverage of medications. It remains, to my knowledge, the best single source of information on the use of magnesium for headache--both for prevention and as a treatment during an active cycle.

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.)

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. Search for "migraine"; covers CH and migraine.

WWW.NOAH-HEALTH.ORG Change of address. Delete, This is a directory of links grouped by many headache topics.

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. Harvard Medical Schools.

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". Also physician finder.



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. (Sorry to report that they have moved to a subscription service with a minimum charge of $145/year for an individual.)


www.SAFEMEDICATION.COM General information about prescription medications.


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: (Americn Academy of Neurology) or; 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.)


Doing a search using "headache" on 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 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.

HEADACHE IN CHILDREN AND ADOLESCENTS. Eds: Paul Winner & David Rothner. Hamilton, Ontario: BC Decker, Inc., 2001, $69.95. A review of this book was very favorable, identifying the editors as recognized experts in working with children and adolescents. (I have not seen the book.)

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".


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.

WWW.ACHENET.ORG American Council for Headache Education.



Some personal thoughts posted on 1/18/00.


See message at 1/18/00, "Dealing with managed care" and,

"If HMO/insurance won't cover treatment", at 12/06/99.

WWW.HEALTHINSURANCEINFO.NET Provided by Georgetown University. "Consumer Guide for Getting and Keeping Health Insurance." State by state guide to protections around health insurance.

Because obtaining coverage for preexisting conditions (CH) is usually difficult, impossible, and/or expensive, searching a variety of sources is often required. This is not a comprehensive list of sources but a few suggestioins copied from the Prostate Problems Mailing List (10/31/01).
1. Group coverage may be obtained through professional associations, school alumni associations, or fraternal organizations.
2. National Association for Socially Responsible Organizations, a nonprofit cooperative based in Wasington, D.C.. The group doesn't sell health insurance but it provides referrals to other groups which might be able to help find coverage. Phone, 800/638-8113;
3. Working Today, an advocacy and service group representing all types of independent workers. 212/366-6066;;
4. Women, Inc. a Los Angeles based membership group for female entrepreneurs. 800/930-3993;;
5. The Health Insurance Portability and Accountability Act of 1966 (HIPAA) requires insurance companies to "convert" group health plans to an individual plan which covers the preexisting conditions which was covered when the person was in a group plan. The person must have used the COBRA benefit before using HIPAA. (You may have to call your state insurance office to get information/contacts.)
6. States often have risk pool programs which allow limited coverage for preexisting problems. You might start by looking at the Georgetown University web site mentioned above and/or calling your state insurance office.


AMERICANS WITH DISABILITIES ACT. An outline of your rights to refuse to give information about health issues during a job interview. See in archives, 8/5/01, message, "ADA:job interviews and chronic illness. Your rights...."

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