What are they?
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A note for those who know a C.H. sufferer
Someone has probably given you this note to explain a little about a condition they suffer from called cluster headaches. It is likely that before you met them, you had never heard of this condition, which, after all, affects fewer than 0.07% of the population (69 in 100,000). Men are more frequently affected than women, probably by around 6 to 1.
Because it is so rare, sufferers often feel isolated, especially through misunderstanding by those who do not fully appreciate its effects. This short explanation, written by a fellow sufferer, is intended to help with that.
What is it?
It is a neurological condition which manifests itself as extreme pain, on one side of the head. It is frequently accompanied by some or all of:
- tearing in the eye
- runny/blocked nose
- changes in the pupil of the affected side
- sweating
The attacks are relatively short (1-3 hours), with a very rapid onset. They tend to occur several times a day, most frequently waking the patient in the early hours. There are two types of the condition, episodic and chronic. In the episodic form, the attacks occur in a bout lasting several weeks (4 – 12), after which they disappear for around a month. This is where the name cluster headache comes from. Chronic sufferers do not get this relief, and their attacks can continue daily for many years (25 or more is not unknown).
A curiosity of C.H. is that both the individual attacks and the clusters themselves can have an almost metronomic regularity - attacks starting at a precise time of day is 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 cured by taking a pill, or by thinking of it as a migraine. As one who has had both conditions, clusters are nothing like migraine.
Those bald facts, though, do not do justice to the pain experienced. It is stated, by neurologists who deal with the condition, to be the most severe pain experienced by human beings - certainly female sufferers say that it is more painful than childbirth. Try and imagine giving birth three or more times a day, possibly for several years, and you may get some idea of what it is like. Another description is that of a belt to the side of the head with a baseball bat, but take that instant of pain, and imagine it as a continuous pain for an hour or more. Quite exhausting to bear. This is no exaggeration. In fact, Cluster headaches can be worse than that. A more sinister name for it is suicide headache - for obvious reasons. More than half of all sufferers have considered this, and, sadly, I know of at least three who have been driven to it.
How is your friend/colleague 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 C.H. 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 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 symptoms, but, to my knowledge, never remove them.
It should be noted here that GPs are often poorly informed about C.H., 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, nothing. The best thing is to stay well away. Conversation is extemely difficult for them, because all their energy and concentration is consumed by trying to bear the agony they are going through. 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.
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 C.H.
"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!
Source - www.clusterheadaches.com