The pain of a cluster headache is caused by the swelling of
veins, arteries and blood vessels around the major facial nerve. The exact
mechanism that causes this swelling is not fully understood. What has
been established is that cluster headaches sufferers have a deformed
hypothalamus. The hypothalamus is the part of the brain known to act as the
body clock. It also controls the excretion of certain chemical messengers from
glands. One of these chemical messengers is serotonin. It is known that
serotonin levels fluctuate in headache patients.
Headache sufferers are
shown to have (under a PET scan) a malformation of the hypothalamus during an
active cluster cycle.
This is a sufferers description of an attack.
It comes on scarily fast, within 5 minutes it can totally debilitate. It is centered behind my left eye. The cause of the pain is the blood vessels in my head/brain/face/throat swelling up to 20 times their normal size. This presses on the main nerve on that side of my face. This particular nerve runs through the eye, the sinus, all the teeth on the left hand side of my face and down my throat.
Everyone knows what toothaches feel like! Well, imagine the worst toothache that you ever had, only it is affecting half the teeth in your mouth - and they aren't responding to any painkiller. That accounts for about 1/4 of the total pain. At least 50% of it is living behind the eye - people have described it as having a red hot poker shoved into their eye socket - that doesn't really tell the whole story.
When the headache is going full force I am aware of nothing but (what seems like) never ending pain. 5 minutes feels like an hour, and at peak time the headache can last 3 hours, only to be followed by another 3 hour headache. It gets so sore that I start to writhe around banging my head on the floor, begging it to go away. I'm an agnostic, but I've actually prayed aloud to any god during these attacks. Sometimes it gets so painful that I am unable to remember who I am, how old I am, where I am, It actually makes me delirious. Usually I moan, sometimes I scream.
The worst thing is that this goes on every day, up to 8 times a day for a month, 2 months every year - and I'm one of the lucky ones. Chronic sufferers face this EVERY day.
In an ongoing online poll of nearly 200 cluster sufferers from around the globe, the following results were gathered.
Have you considered suicide?
No answer 0 0.00%
Yes (Y) 129
65.48%
No (N) 65 32.99%
Have you attempted Suicide?
No answer 0 0.00%
Yes (Y) 18
9.14%
Unfortunately, those that may have been successful, were not available for comment.
There are many conventional treatments available for cluster headaches. Their effectiveness ranges up to around 80%. There are several problems with conventional treatments:
- They can be dangerous - many have potentially severe side effects.
- All need to be taken long term.
- They are expensive.
- They have a limited period of effectiveness. What works this year may stop working next year. Cluster headaches always find a way around the medication eventually.
- Some doctors are ignorant of the condition, and may not prescribe useful medication.
- Reports are beginning to appear that some medications commonly used for clusters (Verapamil and Imitrex most recently) may help in many cases but over the long run, may actually be making cycles last longer, suffer through more attacks, and more intensive attacks.
Headache. 2004 Jul;44(7):713-8. Related Articles, Links
Subcutaneous sumatriptan induces changes in frequency pattern in cluster headache patients.
Rossi P, Lorenzo GD, Formisano R, Buzzi MG.
Objectives.-To document the relationship between the use of subcutaneous (SQ) sumatriptan (sum) and a change in frequency pattern of cluster headache (CH) in six patients. To discuss the clinical and pathophysiological implications of this observation in the context of available literature. Background.-Treatment with SQ sum may cause an increase in attack frequency of CH but data from literature are scant and controversial. Methods.-Six CH sum-naive patients (three episodic and three chronic according to the International Headache Society (IHS) criteria) are described. Results.-All six patients had very fast relief from pain and accompanying symptoms from the drug but they developed an increase in attack frequency soon after using SQ sum. In all patients, the CH returned to its usual frequency within a few days after SQ sum was withdrawn or replaced with other drugs. Five patients were not taking any prophylactic treatment and SQ sum was the only drug prescribed to treat their headache. Conclusions.-Physicians should recognize the possibility that treatment of CH with SQ sum may be associated with an increased frequency of headache attacks.
Sufferers should note that the use of analgesic drugs, such as aspirin and parecetomal, can make things much, much worse...
PMID: 15209695 [PubMed - in process]
- The medications fall into 4 groups:
- Those that prevent the headache cycle.
- Those that prevent the headaches.
- Those that abort the headaches.
- Those that break the headache cycle.
Most fall into 2) or 3) or both 2) & 3).
Some medications concentrate on dealing
with serotonin receptors.
- The most commonly used are:
- Ergotamine, both abortive and preventative
- Methysergide, preventative
- Triptans, abortive
Both ergotamine and methysergide belong to a family of drugs known as ergot alkaloids. Ergot is a mold/fungus that grows on grain. It was responsible for a condition known as St. Anthony's Fire that caused mass hallucinations and gangrene among villages where the infected grain was accidentally eaten.
One of the common side effects of methysergide is hallucinations. Another is reduced circulation. A common side effect of ergotamine is also reduced circulation. This is known as vascular constriction. Both these drugs may occasionally cause gangrene. Initially it was thought that the constrictive effect was the most important factor in the ability of these drugs to treat cluster headaches.
If you are still using conventional prescriptions and have been having a difficult time affording them, you can check out the following sites for assistance. Hopefully you won't need them much longer.