Clusterheadache, vascular pain of the face, cephalgia of Horton, neuralgia sphénopalatine, red migraine, so many names for only one pathology, one of the most painful.
This disease generally affects young men between 15 and 45 years old. More often around the age of 30 however, there are many exceptions to the rule.).
This disease also affects women, to a lesser degree (sex ratio 4/1 – 10/1 depending on the source), and often at a later age.
It appears as violent painful episodes affecting just one side of the face, always the same side. The pain is extreme, constant, and is located at the orbit of and at eye-level. It spreads to the whole of that side of the cranium.
The crises generally last 1H00 but can last from 20 minutes to 3 hours and occur in salvos or bunches (from whence the English name of cluster). The crises often occur at a fixed hour and have usually at night.
They are generally accompanied by at least two of the following symptoms on the painful side: red eye, eye-watering, dripping nose and the syndrome of Claude Bernard-Horner (enophtalmy myosis and ptosis).
It is sometimes described as being the most painful experience a human being will know.
The International Headache Society informs us about the following diagnostic criteria:
A- at least 5 crises answering to the criteria B and D;
B- unilateral severe orbital pains, supra-orbital or temporal pains lasting 15-180 minutes without treatment;
C- cephalgia associated with at least one of the following characteristics occurring on the painful side: conjunctival injection, eye-watering, nasal congestion, rhinorrhea, sweating of the forehead and face, myosis, ptosis, oedema of the eyelid;
D- frequency of the crises from 1 to 8 per day;
E- at least one of the following characteristics: the history, the physical and neurological examination do not suggest an organic disorder; an organic disorder exists but cluster headaches do not initially appear at the same time.
The majority of the patients are known as episodical, i.e. the crises occur episodically with episodes lasting from 15 days to a few months when the daily crises are interrupted by periods of remission, which themselves can last from 15 days to several years.
According to estimations, 10 to 20% of affected people have the chronic form, i.e. the crises occur almost daily for months, years, even tens of years without any period of remission longer than 14 days.
This disease is often misunderstood and is confused with other cephalgias. It sometimes places the patients in a delicate social, psychological and professional condition and it is little known to the general public.
It is difficult to estimate the number of patients in Belgium. Various sources give different estimates, but the number of people reached doubtless amounts to thousands, maybe even tens of thousands.
Vascular pain of the face however remains a rare disease and living with this disease is a challenge to be faced every day.
Who are we?
For the moment there are just three of us who have realized that there is probably a lack of help and assistance available in Belgium with regard to the mutual aid (self-help) between patients. Also it is difficult to get hold of clear information about the illness and the treatments that are available.
This is why the main aim of this site is to supply a forum of related links especially dedicated to cluster- headaches. In this way, you will be able to enter into contact with people will understand you because they know with what you are having to deal.
We are looking for partners therefore please do not hesitate to give us your suggestions and ideas.
What are our goals?
- To inform both patients and close relations about this disease.
- To create a community of mutual aid on this site.
- To provide information specific to Belgium.
- In the long term, if we find partners, perhaps to create an ASBL that would give us a voice to be heard and that would have a social role:
O in better rendering understanding of cluster-headaches through soft “lobbying” and attracting the attention of the media;
O in informing more specifically general practitioners, ENT consultants, ophthalmologists and dentists about this disease which, because of its scarcity at the beginning, is often badly diagnosed.
In the ‘Tips’ data base we can already mention: Cold.
For some, intense cold tends to calm the crisis or in any case to make it slightly more bearable. The cold, in addition to being a vasoconstrictor is slightly anaesthetic. Be careful, ‘though, cold can also be harmful.
For this reason several techniques can be used.
- Direct full cold air conditioning in the direction of the face.
- Put the head under a tap of running water;
- Cover area with a damp cloth.
- Rub with ice.
- Take some fresh air.
- Using the cold air of a hair drier on a wet face.
- Etc…
Heat
Some report that tepid or hot water on the face diverts the pain.
Taurine
Sometimes drinking a fresh drink containing taurine at the beginning of a crisis, will bring relief.
Oxygenate yourself
- Hyper ventilation and using a diver’s respiration which consists of breathing in fully thus putting pressure on the fresh air in the lungs then breathing out in little bursts followed by a relaxation then start again…
- Take fresh air.
- Avoid smoky and badly aired places.
- Force yourself to expectorate…
Stop smoking
Smoking decreases the proportion of oxygen in the blood. Ceasing to use tobacco makes oxygen treatment much more effective. Moreover, it is frequently reported that tobacco can act as a trigger to crises and that it influences their number.
However, a significant number of patients do not smoke.
This makes two additional reasons to stop smoking (Easy to say..).
Don’t drink alcohol
Although many sufferers do not drink, alcohol is recognized as being a trigger for crises. It should be avoided at all costs during a crisis. In addition, it is not recommended in conjunction with several drugs prescribed in the treatment of cluster-headaches.