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Information about Cluster Headaches

area of pain    Are you getting 1, 2 or 3 headaches each day?
    Is the pain excruciating, the worst you've ever felt?
    Does each headache usually last from 15 minutes to 3 hours?
    Are the headaches only on one side of your head, in the area shown in the picture     to the left?
    Does your eye tear or nose run on that same side during a headache?
    Do the headaches occur around the same time each day?
    Do they sometimes wake you up an hour or two after going to bed?
    Do the attacks keep coming for several weeks to several months in a row and             then go away for months or years?

    If the answers to these questions are yes, you probably have cluster                         headaches.    

Just what is a Cluster Headache? 

Cluster Headache (CH) is a "headache" only in that the pain occurs in the head.  Beyond that, there are no real similarities. CH is a rare neurological disorder, affecting approximately 0.1% of the population, which causes excruciatingly severe pain on one side of the head, usually centered around the eye.  The pain is often described as boring or stabbing and is often likened to someone plunging a red hot poker into the eye.  The pain can spread into the temple, jaw and neck area.  The pain escalates very rapidly going from zero to debilitating in 5 to 10 minutes and stops as quickly as it starts. 

Attacks last between 15 minutes and 3 hours.  One or more of several physical reactions accompany the pain, always on the same side as the pain.  These include watery eye, runny and/or stopped up nose, red/bloodshot eye, a drooping eyelid, forehead and facial sweating, and irritability.  Attacks can occur from once every other day to eight times per day, usually at the same times each day.  An attack will wake a sufferer from a sound sleep.  Unlike with a migraine, a sufferer cannot lay down during an attack.  Instead, he or she will usually pace the floor, sit rocking back and forth, bang their head on the floor or wall, curse, scream, and cry from the pain.  Also, unlike migraine, light and sound usually have no effect on the attack, though there are exceptions to every rule. 

CH is divided into two sub-groups - Episodic and Chronic.  In Episodic CH the sufferer usually has attacks every day for several weeks/months followed by several months to a year or more between cycles.  Chronic CH sufferers get no such break.  They suffer day in and day out for years. 

There is currently no cure for CH and treatment is hit and miss at best.  What works for one sufferer may or may not work for another.  Treatments that worked last cycle may not work during the next.  Treatments that have not worked in the past, may work during future cycles.

Here is a link to a Cluster Headache quiz on www.clusterheadaches.com.  This quiz, while not a definitive diagnostic tool, will give you a quick idea about whether or not you may suffer from cluster headaches.  Regardless of what type of headache you think you may have, you need to be seen and diagnosed by a doctor, preferably one who specializes in headache treatment.  There are many problems and diseases that mimic certain headache types.  While Cluster Headaches won't kill you, treating yourself for CH and ignoring possible other problems, can.

Below, you will find many links to information about diagnosing, treating, and living with Cluster Headaches.  Unfortunately, due to the rarity of this disease, you may find yourself teaching whatever doctor you have about the disease.  Many sufferers have had to go through several doctors and neurologists to find one that is knowledgeable and that will work with them in their treatment.  Knowledge is power and you are your own best advocate in your medical treatment.   READ, READ, READ, all you can and then go read some more. 

MARCH, 2011
- One of our most knowledgeable sufferers recommends this article at Medscape as the most current and comprehensive abstract on Cluster headaches at this time.  Medscape's policy will not allow us to reprint the entire article here.  When you click on the link, you will be asked to join (it's free).  


Cluster Headache—Acute and Prophylactic Therapy

Avi Ashkenazi, MD; Todd Schwedt, MD
"Cluster headache (CH) pain is considered the most severe of the primary headache syndromes and is arguably one of the most severe pain syndromes that afflict humans.[1] The disorder is characterized by attacks of severe, strictly unilateral pain, typically in the retro-orbital and fronto-temporal areas, associated with symptoms and signs of cranial autonomic dysfunction (tearing, conjunctival injection, rhinorrhea/nasal congestion, and Horner's syndrome) ipsilateral to the pain. Patients typically pace restlessly during an acute attack. The hallmark of CH is the circadian periodicity of the attacks. Also, in episodic CH (ECH), the cluster periods often occur at predictable times of the year (circannual periodicity). Recent imaging studies confirm activation of the hypothalamus during CH attacks.[2] These findings may explain the characteristic periodicity of CH. Activation of the trigeminovascular system has also been shown during acute attacks."  

PDF of above article in full

General Information and Research Headache Comparison Table Cluster Headache Support Websites General Headache Information Sites Children With Cluster Headaches

Sufferer Recommended Doctors Oxygen - Justifying High Flow Rates Cluster Headache Medications CH Diagnosis & Treatment by Dr. Todd Rozen Hypothalamus

Communicating with Doctors about CH Communicating with Insurance Companies about CH
Communicating with Employers about CH Medication Studies and Research Disability and Employment Rights

Information on Clinical Trials
Serotonin Histamines and Serotonin Surgery How to Give a Subcutaneous Injection

Note:  Articles with PMID numbers can be found at the PubMed website

OUCH Headache Diary 
(69kb .pdf file) Use this form to track your headaches and the effectiveness of your treatments.
Medical Alert Card
(239k .pdf file)
Complete this form with your doctor and take it with you in the event of an emergency room visit.  It will give the ER staff your CH related medical information and hopefully result in expedited and proper treatment.
Colleagues Letter  Explains CH to employers, co-workers, friends, etc.   
(Also in French) 
Adobe Acrobat ReaderYou will need Adobe Acrobat Reader to read the above files.  You can download it by clicking on the Adobe graphic if you don't already have it on your computer.

Need help getting meds? Partners for Prescription Assistance

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DISCLAIMER: The information provided on this web site is for educational and informational purposes only.  It should not be used as a substitute for seeking professional care or for the diagnosis and treatment of any medical disorder.  O.U.C.H. makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!

World Headache Alliance