CLUSTER HEADACHE FAQ FOR: USENET NEWSGROUP ALT.SUPPORT.HEADACHES.MIGRAINE Section IV of IV, Headache FAQ's VERSION 2.0 Part 4 of 4 Version 2.0 Written/collated by Bob Wold Feb/12/00 Rwold42932@aol.com Some sections Edited by Jack Sandweiss, Research Associate, California Medical Clinic for Headache, Encino, CA All rights reserved and copywrited If you post this to the WWW or Usenet, please inform the author, for the purpose of receiving updated versions in the future. Contents, part 4 of 4 13. Tips 14. What's in our future 15. References and Resources 16. Contributors 13. TIPS 13.1 The Shower Cure (TM) Personally, I find a shower with someone sure takes my mind off the headache, but it has been reported in this newsgroup that various combinations of hot and/or cold showers can abort a cluster headache. Try it and see, guaranteed artificial coloring and preservative free ;) (TW) "I run the shower as hot as possible over my entire body. Then, I turn the shower head downward and switch to cold only. I spray the cold onto my head area only and keep it on my head for as long as possible, or until a {shiver} goes through my body. Then I turn the hot water back on and reheat my head and body. I have found relief several times, especially after repeating the treatment through about three or four cycles." (BW) 13.2 Massage Therapy This didn't help to end a cycle for me but did help on several occasion's to stop the cycle from spiraling downward into oblivion. As the cycle's worsened, my upper back, shoulder and neck muscles would become strained and tied into knots waiting for the next attack. Massages helped to loosen up the muscles and made the cycle slow down a bit. A cycle that was progressing from 3 to 5 to 8 attacks per day, backed off to 5 attacks and allowed the medications to get a better handle on things. It stopped some of the peripheral things from making things worse. Feels good too!! 13.3 Using Stadol? Many people "water down" their Stadol®. This can easily be done using saline solution. You can purchase a metered spray can of this at your pharmacy. By diluting the Stadol, you are able to treat the headaches with just enough medication to stop the pain without using more than is needed. If it only takes one-half a full strength spray or one and one-half sprays rather than 2, the bottle will last for more treatments. Don't "prime" the sprayer into the air. What a terrible waste of what little medication there is in the bottle. If you keep an old bottle around, fill it with the saline solution only. When you get a new bottle, prime the sprayer with the saline. Switch the "primed" sprayer to the new bottle of Stadol. The first spray will then be only saline solution which can be sprayed into the air, pulling the next metered spray of Stadol into the sprayer and ready for your nose. 13.4 Treating cluster headache with cold air "It's worth a try. It's also easy during the winter if you live in an area that gets *cold* during the winter. I've tried "pacing" outside when the weather was appropriate and yes, even tried sticking my head in the freezer during the summer. ( I'm not the only one either ;-P ) Pacing in the cold weather has definitely helped me during this latest cycle." The results of a study showing that cold room air inhalation is effective for aborting cluster headaches: Four patients with episodic cluster headache and four with chronic cluster headache were instructed to inhale room air cooled to 42 deg-F via an inhalation device that delivered the cold air to a nonrebreathing face mask at a rate of approximately 6 liters per minute. Patients inhaled the cold air until the headache was relieved or 15 minutes had elapsed, whichever was first. This procedure was continued through 10 headache attacks. For comparison purposes, a second study was done involving six patients who used 100% oxygen at each of five additional headaches. Inhaling cold room air effectively aborted cluster headaches in 6 to 15 minutes in 85% of episodes. By comparison, 100% oxygen was effective in 83%, with response occurring in 7-15 minutes. Cold air and 100% oxygen provided equivalent pain relief (mean level-of- relief score was 2.69 for cold room air and 2.72 for 100% oxygen). "Room air cooled to 42 deg-F is as effective as 100% oxygen in relieving cluster headache pain," concluded the investigators. "This offers cluster headache patients an alternative treatment that is safe, effective, convenient and inexpensive." (McLeod MS. Headache. 1996;290. Abstract.) 13.5 Don't be afraid to ask: We've all been told when starting a new preventative, that it "may take a while" to start working. Please don't be afraid to ask for something to help with the pain "while you are waiting." Don't be fooled into thinking that you want to know "when" it starts to work and you might not be able to tell if the pain isn't there. Believe me, you will know if and when something starts to work. It's never a "problem" trying to figure out "which" medication is working or doing the job. What a nice "problem" to have to figure out. 13.6 Biofeedback OK, so this is where things may start to sound a little tricky, a little strange. If you haven’t reached the point of willingness of trying everything at hand, you will. Biofeedback has had good success in tension related headaches and in many cases, has had a positive effect on vascular headaches. Even if the physical aspects and changes that occur during biofeedback do not directly effect the cluster headache, it could, at the very least, have a positive effect on your mental outlook and ability to cope with cluster headache disease. The stress level involved between attacks raises as the attacks continue and as they increase. If nothing else, this is a way of relaxing and keeping a grasp on reality. In some cases, this relaxation *can* bring on a cluster. You will probably know before you even try these techniques whether or not relaxation techniques tend to bring on attacks. Biofeedback is a method that teaches people to control specific target functions of the central and autonomic nervous system, such as muscle tension and peripheral blood flow. The blood flow areas are what most concerns the cluster patient. Biofeedback programs can help to control blood flow, thereby changing the subjects hand temperature. Changing the blood flow patterns may coincide with the theories that attribute oxygen inhalation being effective due to it’s lessening of blood flow to the brain. The additional benefits of biofeedback are the relaxation techniques utilized. The longer you’ve struggled with clusters, the more frustrating the condition can become, hence the more important relaxation is to your mental health. These relaxation techniques can also guard against falling further and further into a poor state of health due to the constant onslaught of the cluster attacks. 13.6.1 Biofeedback Exercises The "Diaphragmatic Breathing Technique" is an exercise designed to achieve the relaxation response from your system. The diaphragm is a grouping of the main muscles used in breathing. It is the dome-like wall of smooth muscle that separates the lunges from the rest of the organs. All breathing exercises should be done by taking slow, gentle deep breaths. When inhaling, the abdomen should push out. When exhaling, the abdomen should pull in. Breathing should be done in a very slow, even flowing manner with careful attention to the rising and falling of the abdomen’s movement. The rest of the chest area should have little or no movement. Begin a gentle inhalation through the nose. Be sure the abdomen is pushing out with the breath. Try to notice a sense of ease and well being that you are creating in your body, with each breath. Take this breath down to the bottom of your lungs. Do not allow your shoulders or chest to rise. Inhale a sense of clean air and relaxation. When your lungs are full, allow a slow, smooth transition between inhaling and exhaling. Begin to exhale through your mouth slowly, allowing the abdomen to pull back in. While you are exhaling, imagine that you are bringing up any discomfort and muscle tension with each breath. Blow your breath gently away from you. Allowing a sense of quiet to take over your body, repeat the above steps several times per day. The most important part of this exercise is the “diaphragmatic breathing,” with movement only in the lower portions of your lungs and your diaphragm. 13.6.2 Hand Warming One theory behind the success of oxygen inhalation, is that it decreases the amount of bloodflow to the brain. Another way to achieve the same result is called handwarming. If you can learn how to raise the temperature of your hands, you can reduce the bloodflow to the brain. This handwarming is done through mental imagery. Sit back and relax. Before beginning the exercise, take three deep breaths, releasing as much tension as possible. Picture yourself in a quiet scene that will allow your body to produce the physical responses that would be present in those surroundings. Imagine a place that would give you a sense of warmth and well being. Examples to aid in raising your hand temperature include a sunny beach, warm sand, hot sun, sitting in front of a fireplace, holding a cup of hot coffee. Although this technique sounds like it would be impossible for the average clusterer to use while in the midst of a cluster, it may be beneficial to try it in between attacks in an attempt to stabilize the vascular system and to induce a state of physiological relaxation. Thermal training redirects some of the blood from the engorged blood vessels of the brain to the extremities. If you can start the process at first sign of a cluster, while you can still concentrate, it may be possible to relieve some of the pain and or duration. Use a hand held digital thermometer to track your progress and to show yourself the results that are quite surprising sometimes. 14 What's in our future? I think that gene therapy may someday be the one avenue that gives us some relief, permanently and without too much damage to our existing self's. As an example, a study done jointly by the U. of S. Carolina and U. of Illinois has shown that a herpes simplex virus type 1, the kind that causes cold sores, can be genetically engineered to block pain signals. Although much more animal studies must be done first, it looks like we're about two years down the road before it could be tested in humans. The therapy can be directed to specific areas of the body by injecting the virus directly into the site of the pain. The virus then travels up the nerve pathway and settles into nerve fibers along the spinal cord that directly relates to the painful joint, organ or limb. The virus stays in the nerve cell, producing a natural opiate only in response to pain signals. To create the genetic pain killer, the scientists removed the DNA from the virus that allows it to grow and cause disease. They then inserted DNA that produces a human protein called "Preproenkephalin." This is a precurser of opiate-like peptides called "Enkephalins," which are natural analgesics. The virus will sit there forever, remaining in the Neurons, and never causing disease. 15. REFERENCES AND GETTING HELP Cluster Headaches are generally grouped together with migraines, and although the causes are not believed to be the same, migraine resources are a valid and useful source of information. Read the migraine FAQ's. In addition to medical information, they are also good sources on "support" and coping with the problems of chronic head pain. 15.1 Headache Specialist Referrals: You can get referrals from either of these organizations: 15.1.1 National Headache Foundation (NHF) 428 W. St. James Pl., 2nd Floor Chicago, Illinois 60614-2750 HEADACHE HOTLINE (800) 843-2256 (773) 525-7357 (fax) http://www.headaches.org http://www.headaches.org/homepage.htm 15.1.2 American Chronic Pain Association P.O. Box 850 Rocklin, CA 95677 (916) 632-0922 Fax 916-632-3208 E-mail ACPA@pacbell.net http://www.theacpa.org/ 15.1.3 American Association for the Study of Headaches: Home Page http://www.aash.org/ http://www.aash.org/headj/Default.htm 15.1.4 American Council for Headache Education (ACHE) 19 Mantua Road Mt. Royal, NJ 08061 (800) 255-ACHE [2243] (609) 423-0258 FAX (609) 423-0082 achehq@ache.smarthub.com http://www.achenet.org Compuserve- ( GO GOODHEALTH ) message board, Library, Conference room AOL- Keyword: PR HEADACHES Chat on Tuesdays at 10:00 and Thursdays- am Prodigy (MHA) Bulliten Board, chat Thursdays 15.1.5 Migraine Association of Canada 356 Bloor Street East, Suite 1912 Toronto, Ontario M4W 3L4 Telephone: (416) 920 - 4916 Facsimile: (416) 920 - 3677 To Order Information: 1 - 800 - 663 - 3557 24-Hour Information Line: (416) 920 - 4917 wschaefe@niagara.com http://www.niagara.com/migraine/migraine.html 15.1.6 Migraine Association of Ireland http://www.migraine.ie/ 15.1.7 For organizations in other countries: visit http://www.niagara.com/migraine/org.html 15.2 In-Person Support Groups NHF and ACHE both have support group programs. In Canada the Migraine Association of Canada has support groups. Contact any of them about a group in your area. They also have information about the location of support groups on their Web pages. The Migraine Association of Canada also has the Person to Person Network that puts members with similar interests or in similar locations in touch with each other. Although it's not specific for headache, the American Chronic Pain Association has the most widespread network of support groups. The ACPA is actually international, with groups in Canada and many other countries. 15.3 Online resources As fast as websites evolve and change, it is impossible to post a list that would always be applicable, correct of content and reliable. For this reason, please take this list as a general list of references only and a sampling of the type of information out there in cyber space. Whenever you decide to look at the following sites, some are sure to have improved while others may very well be out of date. This is a "live" document that will be updated and changed as needed. If you have new sources that you feel should be posted, or find that listed sites no longer deserve mention, please write to the author of this FAQ. Finding information on "the net" including *this* document, should be only one step in your search for accurate and reliable information. The FAQs for the alt.support.headaches.migraine newsgroup may be found at the following locations: http://www.meldrum.demon.co.uk/migraine/ http://www.msn.fullfeed.com/~ronda/help.html http://www.geocities.com/HotSprings/Spa/7379/karen.html These additional FAQs, I, II, and III, cover migraines and support/information, treatments on headaches of all kinds and dealing with them on an every day basis. A "good read" all. JAMA Migraine Information Center. http://www.ama-assn.org/migraine Dr. L. Robbins http://www.headachedrugs.com/ Excellent Site Continual updates on what's new in research, medications and treatments for Cluster headaches and others. Medline http://www.betterhealth.com/sponsors/aol/cgi- bin/frame_medline.html You Are Not Alone A very good informational and support web page: http://www.geocities.com/HotSprings/Spa/7379/karen.html Award winning site on Headaches & chronic pain support Ronda's Migraine Page Also a very good site: http://www.msn.fullfeed.com/~ronda/ Cluster headaches, Info http://www.healthanswers.com/centers/topic/overview.asp?id=wom en's+health&filename=000786.htm Cluster Headache Web Site http://www.clusterheadaches.com A growing community revolving around cluster headaches. An excellent site with links, chats and a message board. Pain Control Information If you have come to the point that you are a candidate for seeing a Specialist in Pain control, I would highly recommend visiting the following site. They will send you in the right direction of doctors willing to treat your pain. http://www.widowmaker.com/~skipb/panic.html State guidelines on pain control http://www.medsch.wisc.edu/painpolicy/index.html American Academy of Pain Medicine http://www.painmed.org/ Opioid agonist-antagonist drugs in acute and chronic pain states. http://www.pain.com/library/detail.cfm?Articles_Unique=22&itw_ number= (KC) http://home.ptd.net/~paulbarb/narc.htm (KC) Surgical Treatment Options: Trigeminal Rhizotomy See: http://www.ojoy.com/fpr/Texts/Tew-9.htm Microvascular Decompression http://www.neuronet.pitt.edu/groups/ctr-microvasc/mvd.html Drug interaction reference sites: http://www.rxlist.com Is very easy to use and is written in a way even we can understand. No double talk gobbledy gook there. It's one of my favorites although I have to say it isn't the most complete one that I have seen (KC) Also: http://health.phillynews.com/pharmacy/search.asp Site for international equivalents of drugs: Informative sites that help with different names of drugs used throughout the world. Raymot Medical Page -- http://www.powerup.com.au/~rmottare/med.htm Raymot Rx Page -- http://www.powerup.com.au/~rmottare/drugs.htm Free medication to those in financial need: http://www.li.net/~edhayes/indigent.html http://www.the medicineprogram.com/info.html 15. 4 Books / Newsletters / Research Documents I would recommend the following: Dr. L. Robbin's "Management of Headache and Headache Medications" 2nd edition (to order, 1-800-springer ) Completely updated and revised. "Cluster headache. Recent development in clinical characterisation and pathogenesis", Manzoni GC, Acta Neurol (Napoli) 1991 Dec; 13(6):506-13 "A review of hormonal findings in cluster headache. Evidence for hypothalamic involvement", Leone M, Cephalagia 1993 Oct; 13(5); 309-17 NHF, ACHE, and ACPA have newsletters. These come with membership. In Canada, The Migraine Association of Canada has a newsletter called Headlines. Membership for any of these is typically 15-20 US$. British Migraine Association, 178a High Road, Byfleet, West Fyfleet, Surrey KT14 7ED. New England Journal of Medicine http://www.nejm.org/content/index.asp 16. CONTRIBUTORS If anyone objects to their words being including in this FAQ, I can either remove them, or anonymize them. JDD: John D. Draeger BW: Bob Wold, mailto:rwold42932@aol.com DG: Doug Green. mailto:dgreen@infi.net MS: Michael N. Skaredoff. mailto:MikeS73844@aol.com RP: Rich Perrine, mailto:perrine@ridgecrest.ca.us RVZ: Russell Van Zandt. mailto:russvz@wwa.com JS: Jack Sandweiss. mailto: Sandweiss@mediaone.net SB: Stu Brown, mailto:stubrown@q.continuum.net TW: Tim Wortley mailto:twortley@tiac.net KC: Karen Cohen mailto: FibroKaren@aol.com additional website and resources info from: Pat Smallwood mailto: psmallwood@cybertron.com Dennis @ anon-14866@anon.twwells.com Jonathan W. @ jonsailr@tiac.net