Contacts: Advice for Friends and Acquaintances of Cluster Headache Sufferers.
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Manfred Sander, 37603 Holzminden Tel. 05531-140007
Clusterheadache Patient´s group
Tel. 02562-965255 [email protected]
Milan Meschko, 91267 Neu-Anspach Tel. 06081-962678,
Dr. med. Regine Augspach-Hofmann, 57462 Olpe Tel. (02761) 2081
Für die Übersetzung dieses Faltblattes in die englische
Sprache danken wir sehr herzlich Frau Kimberley Sadler
Edith Renneberg, 37130 Gleichen Tel. (05508) 431
Kerstin Szanyi, 81241 München Tel. (089) 89689714
Such groups are now very wide
of cluster headache sufferers, your friend is
spread and are recognised by the experts.
suffering from a very rare and fiercely painful,
headaches and social surroundings the following
To sum it up, it can be said that to enable
incurable (but not life threatening) ailment known
yourself to live with the chronic pain, it does not
as Cluster headaches or Bing-Horton-Neuralgia.
It is not easy to live with a handicap,
make any sense to simply surrender to the pain
According to current knowledge it relates to a
one´s body, personality and private and work
infection of the nerves close to the brain.
relationships are all very much affected. One experiences a reduction in the quality of daily life
Also it will not get you any further to just
attacks of the most vicious severity which can not
of which a “healthy” person could hardly imagine.
constantly fight against the pain, it is all too easy
The best thing for most sufferers in the
Please help your friend/acquaintance, do
acute situation is to simply be left alone.
considerable, however, the suffering goes far
not leave a usually reliable friend isolated and
You cannot help them! The pain will
out in the cold just because he has an illness.
automatically begin to wear off after a certain
(that basically he did not want or wish for)
amount of time (a few minutes to a few hours). If
How can you help friends and
the attack is very severe, the patient can help
between friends and acquaintances acquaintances?
themselves either by inhaling Oxygen or injection
- so called friends withdraw, one Firstly you can be there for them, do
of Sumatriptan. This will limit the length of the
would not be invited to occasions(she not break contact or let the friendship
attack to a about 15 minutes. Usually following
dwindle. If you and your friend are a member
the onset of a severe attack the sufferers are
of a club or group please accept that he/she
simply exhausted, grant them some peace and
may not always be able to attend events.
quiet. When the attack is over the sufferer will
And suddenly one is all alone and asks
return to your circle and you will barely notice
oneself “what am I doing in this world??”
hours due to an attack, you can appreciate that
sufferer would not be very interested in taking
However, this fact should not be a
part in any sport or social events. However, the
sufferers in many cases are very irritable and
reason to break all contact with people and
occurrence of the severe attacks phase only
tend to be over sensitive. Imagine you had pain
withdraw from the outside world. Certainly it is
usually lasts for a couple of weeks - and then a
up to 8 times a day which feels like someone has
very difficult when one has a lot of pain to exist
put a hot poker in your eye and this happens
normally but that would be the case for anyone in
There is certainly no reason to envy the
over many weeks, you would also be easily
What is important is that we show
too could be affected by this dreadful menace.
reaction, it would be fatal for the sufferer if
ourselves and the outside world that despite
he/she were to lose social contact due to the
our illness we have the will to continue,
CSG - Cluster headache Self-Help Group is
illness. And please show understanding when
although we occasionally need a “timeout”
trying to bring this suffering out in the open, to
period.
simply ensure that the sufferers of this hindrance
appointments altogether at short notice. Please
think about the sufferer, it is also hard for
him/her, they were also looking forward to seeing
make new friends and to work together to cope
contact the attached address where you will find
with the health, social and emotional problems
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