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Help us fight Cluster Headaches! Visit the O.U.C.H. Website!

Posted by Bob Johnson ( on January 24, 2001 at 14:00:51:

In Reply to: CLUSTERHEAD I AM posted by TONY on January 24, 2001 at 04:02:05:

Tried to send you a private message to the address you left but it was returned as an error. Here is some sources which might help. Contact me if you have difficulty obtaining anything.

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

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

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


**** For UK folks seeking contacts. Has guideline for
diagnosis and treatment but it's less useful/adequate compared to other
sources listed here.

**** For a list of public libraries which
have special health resources or medical libraries that are open to the
**** Same as preceding.

**** Alternative medicine

**** The best place to start health searches; The
National Library of Medicine--the medical equivalent to the Library of

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.) 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".



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.



www.SAFEMEDICATION.COM General information about prescription


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 &
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

"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

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.

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

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.

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

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


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.


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.

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