What is Cluster Headache?

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

Just what is 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 to several 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.  Cluster Headache 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 Headache.  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. 

These links open in a new tab/window.  When you are finished reading them, just close that tab/window.
Crisis Intervention	Need help getting meds? Partners for Prescription Assistance
General Information and Research	Sufferer Recommended Doctors
Headache Comparison Table	Oxygen - Justifying High Flow Rates
Dealing With Doctors	Cluster Headache Medications
Dealing with Employers	Medication Studies and Research
Dealing With Insurance Companies	Non-Prescription Treatments
Disability and Employment Rights	Serotonin
Cluster Headache Support Websites	Hypothalamus
General Headache Information Sites	Histamines and Serotonin
Pharmaceutical Information Websites	Surgery
Children With Cluster Headaches	CH Diagnosis & Treatment by Dr. Todd Rozen
Information on Clinical Trials	How to Give a Subcutaneous Injection
Note:  Articles with PMID numbers can be found at the PubMed website
Colleagues Letter - Explains CH to employers, co-workers, friends, etc.
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.
Documents listed as .pdf files require Adobe's Reader program to be able to read the file.  Click the Get Adobe Reader Button to download the latest version.   If you have trouble opening the file, try saving it to your computer first by right clicking the link and selecting "Save _ As" then selecting the location on your computer to save the file. Once the file is downloaded to your computer, try opening it.

Do you have new information about Cluster Headaches that is not on this website?  Help out your fellow sufferer by clicking here and submitting the url where the information can be found and whether you want to be listed on the page as submitting the information. 

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!

 

If you want to know about what cluster headaches please read this. Family and friends will gain a better understanding to my problem and how they can help.

Pain level 0
No pain, life is beautiful

Pain level 1
Very minor, shadow's come and go. Life is still beautiful

Pain level 2
More persitent shadow's

Pain level 3
Shadow's are getting constant but can deal with it

Pain level 4
Starting to get bad, want to be left alone

Pain level 5
Still not a "pacer" but need space

Pain level 6
Wake up grumbling, curse a bit, but can get back to sleep with out "dancing"

Pain level 7
Wake up, sleep not an option, take the beast for a walk and finally fall into bed exhausted

Pain level 8
Time to scream, yell, curse, head bang, rock, whatever work's

Pain level 9
The "Why me?" syndrome starts to set in

Pain level 10
Major pain, screaming, head banging, ER trip. Depressed. Suicidal.

This is what i get to judge my pain level on, this is a daily and nightly thing. The Kip cluster headache pain scale