mogracer
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a letter for non-clusteric people you come across: (this was the link)
CLUSTER HEADACHE SYNDROME
A note for those who know a C.H. sufferer:
Why should I read this?
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 1% of the population.
Because it is so rare, sufferers often feel isolated, especially through
misunderstanding by those who do not fully appreciate its effects. This short
explanation is intended to help with that.
What is it?
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. Cluster Headache (CH) has a prevalence of
approximately 69 cases per 100,000 people, although it may be much higher.
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.
Those bald facts, though, do not do justice to the pain experienced. A more
sinister name for a CH is “suicide headache” - for obvious reasons. More than
half of all sufferers have considered this.
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 are typical.
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 cureby taking a pill, or by thinking of it as a
migraine.
CH sufferers experience some of the most intense pain known to the medical
field. There are many medications available to help CH patients manage their
condition. Medications fall into three categories: Preventive (medications which
are used to abort the cycle, such as steroids, Verapamil, Lithium, etc.) Transient
(medications used to help while the preventatives take effect, such as
Prednisone and other steroids), and Abortive (medications which are used to
abort the headache, such as Imitrex, oxygen, etc.) Narcotic medications are not
recommended as effective management for cluster headaches.
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 (particularly when it is suggested that things can’t possibly be that bad). Depression is quite
common. Some individuals lose their jobs, and even partners and homes, as a
result of CH. 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.
It should be noted here that doctors are often poorly informed about Cluster
Headache Syndrome and misdiagnosis is very common. Some GPs are reluctant
to prescribe certain drugs, even when they are known to be effective.
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.
Things to avoid saying/doing
Most sufferers are happy to discuss how things affect them, and how you can
best help them, but you will find your conversations very short if you say any of
the following:
“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 during an attack.
“Just pull yourself together and work through it” - suggest that, and step
back several paces!
This is not rudeness, but simply the result of experience. Sufferers know that
sometimes it is simply better to ignore remarks such as these and leave the
person in ignorance. If you have read this far, though, that probably doesn’t apply
to you!
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