Posted by Rob Heckemann on April 16, 1999 at 12:00:52:
Hi everybody,
Like promised, here's the translation from the text about CH on the site of the Dutch Migraine Foundation. I left some unimportant things out. Anybody with questions about this piece, mail me: rob@blue-willow.com.
Please understand that I do NOT 100% support what is written here, I just translated this, ok? Sometimes, I made some comments, my name is behind them.
BTW, I'm not a translator, so please pardon the mistakes. Here go's:
Clusterheadaches.
Typical for this headache are the periodical attacks that come in groups (clusters). The duration from those attacks can vary from some weeks to several months. The duration from the attack can vary from some minutes to several hours. The almost unbearable pain comes very sudden, often during sleep, behind and around the eye (mostly on one side only). The eye ofter tears, the nose gets stuffy. Patients feel an enormous urge to move around. This dissease, also known as Hortons Syndrome, occurs mostly in male's.
There are some typical factors connected to CH. Male/Female patients are 5 to 1. Recent studies show that the amount of women with CH is raising, maybe due to changing social circumstances: they smoke more and are more stressed.
CH creeps behind and around one eye. The eye gets red, pupil gets smaller, the eyelid drops down (a littlebit) and the nose blocks on the side of the pains.
The attacks are terribly painfull. They come four or more times a day en last 1 to 1.5 hours. Very often a patient wakes up around 2 am with and during an attack.
Usually the cycle takes 6 to 8 weeks, with several attacks a day, followed by a cluster-free period that can last months, sometimes even years.
Dr Mark Gawel:
In our Sunnybrook hospital Health Science Centre we have about 200 CH patients. They call us when having attacks. We treat them and sometimes involve them in tests we do. We often don't see patients for upto three years, untill a new cycle starts. Very often they are very frustrated, thinking that the CH disappeared completely. Three years without CH and they come again!! However, some had some "normal" migraine attacks during that period.
A patient develops in a cycle a sensitivity for certain triggers. A very good way to trigger an attack is to give them alcohol. Even alcoholics stay away from alcoholduring a cycle.
Ch forces the patient, unlike migraine, to moving, pasing around. Soemtimes a patient bumps his head to the wall. A terrible thing to look at.
Migraine patients lay down in a darkened room, are forced to. CH patients, like said before, wake up in the middle of the night with an attack. Those attacks are extremely painfull and the patient is suffering beyond believe. It's even worse when the CH is chronicl, then there are no more pain-free periodes at all!
There are many studies done over the years, trying to find the cause and also the reason why CH suddenly disappears. Not one of those studies gave the answer, but some showed that there is a area near the Hypofyse [hypothalamus? Dunno the exact translation. Rob] (where the vain from the eye come together), where a inflamation is present. It looks like this is causing irritation from some nerves going to vains leading to the face and eye, thus causing the redish colouring. This abnormal amount of blood has to flow back to the vains near the Hypofyse, thus causing the pain. Then the vains (is it vain or bloodvessle? Rob) tighten in a reflex and the attack is over.
CH treatment is frustrating for both patient and doctors. Most medication is not reaching the system fast enough to counter the symptoms. A fast way of adminitering is important.
Tablets don't work very good. Painkillers used in CH patients have various effect: from none to midium. Imigran (Sumatriptan, Imitrex in the US. Rob) are very effective in most patients, however, the maximum dose is two per day.
Sumatriptan tablets don't work, it takes them to long before the effects are noticable.
Sumatriptan nosespray works good sometimes, the effects are not yet fully investigated.
Sometimes, a dose ergotamine, taken before bedtime, prevents nocturnal attacks. (please note that sumatriptan and ergotamine are not compatible, read the information provided with both meds!!! Rob)
Very effective to counter attacks is pure oxygen (O2): 8 liters/minute, inhaled during 15 minutes.
When the attacks start we often use high doses of prednison. When reaching the desired effect we stop the treatment. Unfortunatly, the attacks comes back in 50% pf the cases. When this is happening, we start preventatives: Verapamil (isoptine), methysergide (deseril) or lithium-carbonate. The latter is only used in chronicla cases.
Operations, like injecting the nerveconcentration from the 5th nerve or cutting the vidian-nerve, are performed but not always with succes. Operating is the last resort.
The fact that much more males then females are CH patients led to therapeutic investigation with chemicals that lower the testosteron-level. When this level drops, sometimes the CH disappears. Unfortunatly, also some other bodily functions disappear, which makes this a unpopular treatment.
Dr. Marek Gael is chief-neurologist in the Sunnybrook Health Science centre and the centenary health center. He is vice-chairman from the migraine association of canada. This article is printed before in the magazine from this association "Headlines, spring 1998".
(On the site there is a story from a Dutch CH patient, writing down his experiences. I'm not going to translate that, we all know how it is. Rob.)
The text ends with the following statement from Dr. Lee Kudrow, California:
Within the group of headaches CH has the honour of being the most painfull and, much to the discomfort for the patient, is the most mis-diagnosed one.
Further there is a note that the dutch foundation for migraine patients has a brochure about CH. Interested persons can obtain it via the site, adres: http://home.wxs.nl/~mip/cluster.htm. When I have the time, I will translate this brochure when anybody wants it. Let me know.
Wishing you all painfree days!! Rob.