CLUSTER HEADACHE SYNDROME

A note for those who know a C.H. sufferer:

Someone you know has probably given you this note to explain a little about a condition they suffer from called Cluster Headache Syndrome. It is likely that before you met them, you had never heard of this condition, which, after all, affects less than .05% of the population.
The term "headache"; is very misleading. Your friend or coworker is not experiencing the typical symptoms of familiar primary headaches, such as Migraine and Tension. The cause and cure of Cluster Headache Syndrome are unknown.
Cluster Headache sufferers fall into two categories: Episodic and Chronic. Episodic sufferers experience headaches in clusters for a period of typically six weeks to six months and will go into periods of remissions typically lasting from six months to 3 years. Chronic sufferers experience no periods of remission lasting longer than two weeks in the period of one year.
A CH attack is unilateral (one sided). Pain may begin around one eye, "Like a nail or knife stabbing and piercing" the eye, or as if someone "were pulling out" your eye. It may be accompanied by a tearing or bloodshot eye, drooping eyelid, dilated pupil and nasal congestion or runny nose on the side of the attack. It can radiate from the eye to the forehead, temple, ear, cheek, jaw and neck on the same side. The pain of a CH has been described as piercing or boring and so excruciating that most victims cannot sit still and feel compelled to rock in a chair, walk back and forth, or bang their heads against something.
The pain is so extreme that Dr. Peter Goadsby, Professor of Clinical Neurology at University College London, and the worlds leading researcher on CH has commented, "Cluster headache is probably the worst pain that humans experience. I know that's quite a strong remark to make, but if you ask a cluster headache patient if they've had a worse experience, they'll universally say they haven't. Women with cluster headache will tell you that an attack is worse than giving birth. So you can imagine that these people give birth without anesthetic once or twice a day, for six, eight or ten weeks at a time, and then have a break. It's just awful." Most CH victims experience these attacks 2 to 10 times daily. The pain quickly escalates from no pain to unbearable pain within five minutes. The pain subsides in the same manner. Attacks can last anywhere from 30 minutes to 3 hours or more.
A curiosity of Cluster Headache Syndrome is that both the individual attacks and the clusters themselves can have an almost metronomic regularity - attacks starting at a precise time of day or season are typical. Doctors believe the source of CH is keyed to the hypothalamus which regulates sleep and pain in the body.
It is a headache, in that the pain is in the head, but that is really where the similarity ends. The name itself leads to confusion, as people immediately think of it as something that can be cured by taking a pill, or by thinking of it as a migraine.
How is your friend affected?
This will vary enormously, and, surprisingly, you will almost certainly never witness a full-blown attack. Seeing someone in that state can be quite terrifying. Sufferers are reluctant to allow anyone else to see them at that point, for three main reasons: first, with family and friends, it is simply to avoid them having to see something which, as they are powerless to help, is very upsetting; second, no-one is keen to be seen in a state where they will scream, cry, pace, hit their head repeatedly and generally be uncontrollable - dignity does matter; and three, coping with the attack is wearing in the extreme, and having to cope with other people around is just not possible for most.
In addition, the cumulative effects of repeated attacks and the medications used can lead to tiredness, irritability and an occasional loss of temper. Depression is quite common. Some individuals lose their jobs, and even partners and homes. That said, because having to cope is part of the nature of the condition, most sufferers will "get along" - they have to be quite strong to survive.
Most can be helped by medication, but, because the cause of the illness in unknown there is no cure. The medications often mask or reduce the symptoms, but do not remove them. Many of the medications have difficult long and short-term side effects.
What can you do to help?
When an attack hits, there is nothing anyone can do, unless the sufferer requests help. The best thing is to stay well away. Afterwards, a quiet word is probably a good idea. You may find the sufferer will talk about what he goes through if you ask - he may appreciate the opportunity to explain. Sympathy will be appreciated, certainly, and, if you are working with someone, make sure that you do not give any reason for them to think that you blame them for the inconvenience they may have caused. Most will be keen to get on with things, and repay any efforts you have made to cover for them, if the nature of the work allows.
Some misconceptions:
"I had one of those once" - no-one ever has one cluster headache
"My aunt has migraine too" - migraine is nothing like a CH.
"Can't you just take a tablet and lie down?" - No is the answer, most sufferers cannot lie down.
"I know an acupuncturist/herbalist/allergist/chiropractor/spirit medium/etc who cures cluster headaches!" - No offense, but that's not how this condition works.
To learn more about this disorder, you may wish to visit the following links: http://www.clusterheadaches.org
Cluster Headaches http://clusterheadaches.com
Thank you for supporting your friend. This can be a very frightening disease and your encouragement and understanding is an important and vital factor in helping to manage CH.
Original draft of this letter written by Simon Bower for http://www.clusterheadaches.org.uk