The Cluster Headache Support Group, Inc. is a 501(c)3 non-profit organization dedicated to improving the lives of those suffering with Trigeminal Autonomic Cephalgia and Migraine through Research, Education, Fact-based Information, and Compassionate Support. We provide practical, relevant information for the patient community and healthcare, help people learn to live with this debilitating disorder, and drive scientific research in collaboration with pharma and healthcare to find better treatment options that will help reduce their time to living pain free. Our ultimate objective is to find effective prevention and ultimately elimination of the debilitating impact of these disorders. Have a good look around, and by all means, visit our Facebook page, CHSG and join our PRIVATE discussion group CHSG Private Discussion Group!
The site includes three main areas of collaboration:
- InfoBase - provides detailed information about medicines, alternative treatments, and other methods for management of Cluster Headache. These pages are co-edited by the members of the board with the intent of continually improving and extending the content.
- Cluster Diaries - individuals can create their own cluster headache diary web page and tell their own story about their path to diagnosis, what has worked and what hasn't. This is essentially an online "book of experience" told from the eyes of the Cluster Headache patient
- Facebook - our facebook page for communicating with others, comparing notes, commiserating, or just sharing a laugh
Please take some time to explore the site and by all means, please join us and contribute to this worthwhile collaboration!
Warmest Regards. -Chris
Cluster headache, nicknamed "suicide headache," is considered to be the worst pain known to man. Learn more about this incredibly debilitating disease here.
A Guide for the Cluster Headache Sufferer
by Chris Hannah
So you've been diagnosed with Cluster Headaches, the "worst pain known to humans." Well one thing that you'll quickly find out is that there is no silver bullet for alleviating the pain of cluster headaches. In fact, in many cases it takes so long to come to a diagnosis that you may have already been through several drug trials with your physician or neurologist in order to rule out other maladies. This is not at all surprising because cluster headaches are a pimary headache type. In order to diagnose a primary headache type, your doctor must first rule out secondary headache types, including headaches caused by trauma, lesion, or tumor. This is for your safety, but it can certainly be frustrating going through the various diagnostics with no real pain relief.
The average time to diagnosis is actually several years. This is largely because the much of the general medical community has never encountered cluster headaches and knows little about them. It is a very rare illness, somewhere between .03% and .05% of the population. For this reason, and to ensure proper treatment, it is important to go to the right doctor. Your general practitioner or family doctor may hazard a guess that you have cluster headaches, but by and large, they do not see enough patients with this particular disorder to know enough about it to prescribe the right treatment. A good indicator that you are on the wrong path is treatment of cluster headache with painkillers - aspirin, ibuprofen, naproxen, Vicodin, hydrochodone, Oxycontin, morphine, etc. These medicines have their place, but generally do not work very well for cluster headache and they set the stage for prescription medication dependency. Cluster headache is a life-long ailment for most and there is no known cure. It may come and go over time, but typically will return at some point. You need to get on the path of preventing versus numbing the pain.
General neurologists may be more likely to have studied about cluster headaches, however many have never seen a case. A neurologist headache specialist, on the other hand, has a focused practice on evaluating and treating headache sufferers and will undoubtedly have more experience and education related specifically to cluster headaches. Consider also that choosing the right doctor for your headaches is likely a long-term decision, and a long-term relationship. Side up with a good doctor partner that you like and trust to help guide you through it.
For many cluster headache sufferers, there are specific foods, substances, or conditions that can trigger an attack. Typically these are consistent for an individual but are not necessarily the same for all CH sufferers. Some common triggers are:
- Alcohol of any type while in cycle. Red wine and hoppy beers tend to be immediate triggers for many.
- Processed food preservatives, especially monosodium glutamate (MSG) and nitrates used to preserve meats. MSG is most noted in Chinese food, but is also used in many soups and other canned foods. Nitrates are used fairly heavily in bacon, sausage, ham and many luncheon meats. It is possible to find these meats with no nitrates.
- Carbon monoxide or petroleum fumes. These can trigger strong attacks.
- Significant physical exertion, although for many this is a good way to relax and does not introduce an attack.
- Inhaling smoke. Although many cluster headache sufferers are smokers, inhaling indirect smoke can be a trigger.
It may take a while to determine your specific triggers but over time you will learn what to avoid. If you know it's your trigger but you decide to use it anyway, well, you know the risk.
High-flow oxygen is a godsend for the cluster headache sufferer. It is a risk-free, natural alternative that is highly effective as an abortive for most cluster headache patients. It is easy to acquire and easy to use to abort cluster headaches; however, for whatever reason, many doctors are reluctant to prescribe its use. One of the first things you should do when diagnosed with cluster headaches is request a prescription for Oxygen in the home at 12-15 liters per minute (lpm) with a non-re-breather mask. You may get some pushback, but providing some study data may help. It's a good idea to print out the study documents found here to take with you to the doctor. A nasal cannula at low flow will not work to abort cluster headaches; the concept is to breath as close to 100% pure oxygen as is possible. A deeper description of why this works may be found here. Oxygen therapy has literally changed hundreds of people's lives.
Some cluster headache sufferers use oxygen at even higher flow rates and report more effective aborts. However, it is unlikely that you will be able to get such equipment by prescription. Getting the oxygen supply by script will save some money and make it easier to have oxygen tanks delivered. If you cannot get a prescription for oxygen, or you don't have insurance coverage for it, it is possible to use welder's oxygen. The key differences are that medical oxygen cylinders are more closely controlled and are flushed prior to fill to ensure there are no ambient impurities. Both types are filled with the same oxygen from the same source tanks. Any reputable oxygen supplier will ensure purity in either case in order to limit their liability. Higher flow regulators are available on the Internet without a prescription.
One challenge many have using oxygen at a high flow rate is that the rebreather bags attached to the mask are insufficient in volume and flatten out while taking the oxygen. Some have replaced the bags with larger bags to eliminate this issue. Additionally, the cheap masks that come with typical medical oxygen setups do not displace exhalation air at a high enough rate and do not form an adequate seal on the face, so the user is not breathing 100% oxygen. The O2ptimask from LifeGas is highly recommended and can help ensure successful aborts. Also see this important guide prepared by OUCH for more information: Cluster Headaches Sufferers Guide to Oxygen.
Abortive, preventative, and bridging therapies
There are three types of treatment for cluster headaches:
- Abortives are acute treatment for the immediate relief of cluster headache attacks
- Preventatives, or prophylaxis treatment, intended to prevent the occurance or reduce the severity of attacks
- Bridging therapies that are a type of immediate but short-term preventative while longer term preventatives are titrated to full dose
The most common bridging therapy is a corticosteroid, such as Prednisone, given in a taper (large dose, then diminishing doses) over a period of 1-2 weeks. The corticosteroid works to relieve pain by reducing the body's natural defenses, and thereby reducing any swelling associated with the area of pain. Keep in mind that while taking a corticosteroid your natural immunity defenses are lowered. Other bridging therapies may include pain relievers to help get you through the period while you are ramping up on a cluster headache preventative. These may or may not be effective.
Another bridging therapy is Greater Occipital Nerve Blockade (GON or GONB). This is administered by your neurologist or by a pain management center. Essentially the approach is to numb the nerve by injecting anesthetics and steroids, thereby blocking the sensation of pain. Depending on your areas of pain, they may inject strictly at the occipital nerve base at the back of the head or they may also inject at nerve trigger points on the side of the head, temple area, face, and brow. The injections are not exactly pleasant, but the procedure can provide immediate relief for ongoing "shadow" pain. This procedure can help to significantly reduce the impact of cluster attacks and can reduce or eliminate shadows entirely. Unfortunately, the effects are not long lasting for most, lasting anywhere from 2-3 days to a month or more, depending on the patient.
Preventive medicines for cluster headache are borrowed from other primary indications, including anticonvulsant (anti-epileptic), mood stabilization, and blood and heart medications (calcium channel blockers). There are no prescription medications specifically indicated for Cluster Headache and there is no drug to cure cluster headaches. The cost/benefit ratio for big pharma to invest in novel treatments for .05% of the population is not a very compelling business case. However, leveraging prior work and existing medicines is common practice in the pharmaceutical industry and the ability to take an existing drug to market against a new indication, such as cluster headache, is very appealing from a cost/risk perspective. For this reason, several existing drugs have been evaluated in clinical study and others have been used off label to treat cluster headaches.
Preventatives rarely stop cluster headache attacks altogether, but many do help to reduce the number of attacks and/or the severity of attacks. The following is a partial list of preventatives commonly prescribed for cluster headaches:
|Generic||Trade Names||Dose range||Comments|
|Verapamil||Calan, Covera, Isoptin, Veralan||120-960mg||First-line preventative therapy for chronic cluster. Can be used in conjunction with sumatriptan and steroids. Extended release appears to be less effective against CH. Dosages above 600mg typically require ongoing EKG monitoring. Primary indication: high blood pressure and angina (chest pain)|
|Topiramate||Topamax, Topiragen||100-400mg||Anti-seizure medication that appears to be effective in both migraine and cluster headache. Anecdotal evidence shows a low efficacy rate for cluster headache. May cause confusion, fogginess, difficulty finding words. Primary indication: seizures in people who have epilepsy.|
|Lithium carbonate||Eskolith, Lithobid||600-2400mg||Effective but high side effect profile make it less desirable. Primary indication: episodes of mania in people with bipolar disorder.|
|Valproic sodium||Depakote||500-3000mg||May be more effective in patients whose cluster headaches are accompanied by migraine-type features. Very important - ask for Depakote brand name prescription to avoid confusion with valproic acid. Primary indication: mania in people with bipolar disorder|
|Naratriptan||Amerge||1-2.5mg||Remains effective in the body for a longer period of time than other available triptans BUT another triptan cannot be used concomitantly as abortive. SSRA Primary indication: Migraine headaches|
|Melatonin (9-12mg)||generic||9-12mg||Natural sleep hormone that is not produced in normal amounts by cluster patients. Available OTC|
You may find that your doctor adds medications more frequently than he/she eliminates them. As a general rule, these are powerful medications that carry with them some significant side effects. Some subtle and some right on the surface. It is a good idea to review all of your meds at every visit and eliminate any that are not working for you.
You will likely find that getting to the right medication that works for you will take some time. Every medication switch requires a washout period for the prior drug and a titration (ramping up) period for the new drug. Getting to a therapeutic level of the medicine in your bloodstream can require blood testing and dosage adjustments. These adjustment periods are not often pain free times and can be very frustrating. The only thing you can really do to shorten those trials is to communicate clearly and often with your doctor. If something is clearly not working, make a phone call. Often they can make adjustments to your script over the phone.
Another consideration is that your doctor may need to rule out other headache types and may prescribe certain medicines to test their effect on your pain. Indocin, for example is a highly effective treatment for hemicrania continua, a one-sided headache with symptoms similar to cluster headache. To rule out hemicrania, your doctor may prescribe Indocin over the course of several weeks. These trials are important because medicines that work for one headache type do not necessarily work for another. For example, high-flow oxygen has shown no benefit for migraine sufferers yet it works very well for cluster headaches.
Abortive (Acute) Therapies
Abortive therapies are intended to do just that - abort the headache at its onset and stop the pain. One of the most critical factors in effectively aborting a cluster headache is getting the medicine to the problem, fast. Since cluster headaches come on rapidly and are of relatively short duration, medicines taken in pill form are generally not effective. The route of administration of the drug should introduce the medicine to the bloodstream fairly immediately, therefore, medicine by injection or inhalation will provide the highest likelihood of an effective and rapid abort.
Learn more about all approved cluster headache treatment options here.
Disease name and synonyms
Other terms for cluster headache (CH) are erythroprosopalgia, ciliary or migrainous neuralgia, erythromelalgia of the head, Horton's headache, histaminic cephalalgia, petrosal neuralgia of Gardner, sphenopalatine, Vidian and Sluder's neuralgia, and hemicrania periodica neuralgiformis. In French, it is named algie vasculaire de la face, somewhat a misnomer since Cluster Headache does not primarily involve a dysfunction of arteries or veins.
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