powerless to help, is very upsetting. Second, no-one is
keen to be seen in a state where they will scream, cry,
A note for those who know a C.H. sufferer
pace, hit their head repeatedly and generally be
uncontrollable - dignity does matter. (I heard from
Someone has probably given you this note to explain a
someone recently who went to their local hospital, where
little about a condition they suffer from called cluster
they were not treated with medication, but in fact
headaches. It is likely that before you met them, you
institutionalised for three days because of their extreme
had never heard of this condition, which, after all, affects
behaviour.) Finally, coping with the attack is wearing in
fewer than 1% of the population. 69 in 100,000. Men are
the extreme, and having to cope with other people
more frequently affected than women, probably by
In addition, the cumulative effects of repeated attacks,
Because it is so rare, sufferers often feel isolated,
and the medications used, can lead to tiredness,
especially through misunderstanding by those who do not
irritability, and an occasional loss of temper (particularly
fully appreciate its effects. This short explanation, written
when it is suggested that things can't possibly be that
by a fellow sufferer, is intended to help with that.
bad). Depression is quite common. Some individuals lose their jobs, and even partners and homes, as a result of
C.H. That said, because having to cope is part of the nature of the condition, most sufferers will "get along" -
It is a neurological condition which manifests itself as
they have to be quite strong to survive.
extreme pain, on one side of the head. It is frequently accompanied by some or all of:
Most can be helped by medication, but, because the
cause of the illness is unknown there is no cure. Those on
medication take (generally large quantities of) pain-killing
and preventative drugs. These often mask or reduce the
- changes in the pupil of the affected side,
symptoms, but, to my knowledge, never remove them.
It should be noted here that doctors are often poorly
The attacks are relatively short (2-3 hours), with a very
informed about C.H., and misdiagnosis is very common.
rapid onset. They tend to occur several times a day,
Some GPs are reluctant to prescribe certain drugs, even
There are two types of the condition, episodic and
chronic. In the episodic form, the attacks occur in a bout lasting several weeks (8 – 12), after which they disappear
for around a month. This is where the name cluster
When an attack hits, nothing. The best thing is to stay
headache comes from. Chronic sufferers do not get this
well away. Afterwards, a quiet word is probably a good
relief, and their attacks can continue daily for many years
idea. You may find the sufferer will talk about what he
goes through if you ask - he may appreciate the
A curiosity of C.H. is that both the individual attacks and
the clusters themselves can have an almost metronomic
If you are interested, you might like to visit
regularity - attacks starting at a precise time of day is
www.clusterheadaches.com.au where your friend is
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
Most sufferers are happy to discuss how things affect
something that can be cured by taking a pill, or by
them, and how you can best help them, but you will find
thinking of it as a migraine. As one who has had both
your conversations very short if you say any of the
conditions, clusters are nothing like migraine.
Those bald facts, though, do not do justice to the pain
"I had one of those once" - no-one ever has one cluster
experienced. It is stated, by neurologists who deal with
the condition, to be the most severe pain experienced
"My aunt has migraine too" - migraine is nothing like
by human beings - certainly female sufferers say that it
is more painful than childbirth. Try and imagine giving
"Can't you just take a tablet and lie down?" - no is the
birth three or more times a day, possibly for several
answer, most sufferers cannot lie down during an attack
years, and you may get some idea of what it is like. A
"Just pull yourself together and work through it" -
more sinister name for it is suicide headache - for obvious
suggest that, and step back several paces!
reasons. More than half of all sufferers have considered this, and, sadly, I know of at least three who have been
This is not rudeness, but simply the result of experience.
driven to it in the last eighteen months.
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
This will vary enormously. Sufferers are reluctant to allow
anyone else to see them at that point, I suspect for three
reasons. First, with family and friends, it is simply to avoid them having to see something which, as they are
Cluster headaches. Cluster headaches, named for their
When the hypothalamus malfunctions, thyroid problems,
repeated occurrence over weeks or months at roughly the
cluster headaches, and sleeping, eating, or reproductive
same time of day or night in clusters, begin as a minor
pain around one eye, eventually spreading to that side of
The sudden start and brief duration of cluster headaches
the face. The pain quickly intensifies, compelling the
can make them difficult to treat; however, research
victim to pace the floor or rock in a chair. "You can't lie
scientists have identified several effective drugs for these
down, you're fidgety," explains a cluster patient. "The pain
headaches. The antimigraine drug sumatriptan can
is unbearable." Other symptoms include a stuffed and
subdue a cluster, if taken at the first sign of an attack.
runny nose and a droopy eyelid over a red and tearing
Injections of dihydroergotamine, a form of ergotamine
tartrate, are sometimes used to treat clusters.
Cluster headaches last between 30 and 45 minutes. But
Corticosteroids also can be used, either orally or by
the relief people feel at the end of an attack is usually
mixed with dread as they await a recurrence. Clusters
Some cluster patients can prevent attacks by taking
may mysteriously disappear for months or years. Many
propranolol, methysergide, valproic acid, verapamil, or
people have cluster bouts during the spring and fall. At
their worst, chronic cluster headaches can last
Another option that works for some cluster patients is
rapid inhalation of pure oxygen through a mask for 5 to 15
Cluster attacks can strike at any age but usually start
minutes. The oxygen seems to ease the pain of cluster
between the ages of 20 and 40. Unlike migraine, cluster
headache by reducing blood flow to the brain.
In chronic cases of cluster headache, certain facial nerves
Studies of cluster patients show that they are likely to
may be surgically cut or destroyed to provide relief. These
have hazel eyes and that they tend to be heavy smokers
procedures have had limited success. Some cluster
and drinkers. Paradoxically, both nicotine, which
patients have had facial nerves cut only to have them
constricts arteries, and alcohol, which dilates them,
trigger cluster headaches. The exact connection between
these substances and cluster attacks is not known.
Despite a cluster headache's distinguishing characteristics,
its relative infrequency and similarity to such disorders as
sinusitis can lead to misdiagnosis. Some cluster patients
have had tooth extractions, sinus surgery, or psychiatric
treatment in futile efforts to cure their pain.
Other research studies have turned up several clues as to
the cause of cluster headache, but no answers. One clue is
found in the thermograms of untreated cluster patients,
which show a "cold spot" of reduced blood flow above the
eye. The cause of cluster headaches is unknown. They
may be genetic, since people whose parents or siblings
have cluster headaches are at more risk for developing
Cluster headaches may be caused by a problem in an area
of the brain called the hypothalamus. This area of the
brain seems to be more active in people who have cluster
headaches. The hypothalamus is a region of the brain that
regulates sleep cycles, body temperature, pituitary gland
activity, and other autonomic nervous system functions.
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SULL’INFEZIONE Opuscolo a cura dell’AIED (Associazione Italiana per l’Educazione Demografica) via Salaria 58 00198 RomaNovembre 2013Dr. Roberto Sindico - Medico ginecologo Dott.ssa Anna Sampaolo - Psicologa-psicoterapeutaDistribuzione gratuita NOTA IMPORTANTE. Questo depliant ha uno scopo esclusivamente informativo. Ogni sforzo è stato condotto per renderlo chiaro, aggiornato,