Posted by Margi (207.148.135.106) on August 23, 1999 at 11:35:06:
Hi Gang,
The following has resulted from numerous email inquiries I have received telling me of how people are suffering "their CH" for extended periods of time - 18 hours.....10 hours......3 weeks. I can't keep still any longer. No offense is intended to anyone - this is simply meant to clarify some confusion that has been appearing here lately over self- or mis-diagnoses of CH. OK, here goes. Please direct all hate mail to my name in blue at the top and keep it off the board...
From my 14 years of observation of Cluster Headaches, these are my thoughts as to define the disease:
A typical CH cycle, if you are an episodic sufferer, most commonly appears at season changes, lasts 6 - 8 weeks, having anywhere from 2 - 10 intense attacks a day, each one lasting no longer (usually) than an hour to an hour and a half.
For my husband, the first signal of an impending attack is the presence of Horner's Syndrome which is a drooping of one eyelid and the dilation of one pupil. The pain quickly esclates (from 0 - 6 or 7 for the first day or two of the cycle, then 0-8 or 9 for the next few weeks, hitting 10 level pain directly at the peak of the cycle).
The number and intensity of attacks increase steadily until the apex of the cycle is reached, bringing the most number of attacks per day with the highest level of pain. The cycle then gradually starts to diminish until the attacks are completely gone and the sufferer is in remission again. My husband had 6 month remissions for 20 years. The last two remissions have been longer, the first one 18 months, this one 9 months at the moment.
During an attack, blood pressure elevates, heart rate increases, the body sweats, a ganglion lump on the back of the neck is quite common which (for my husband) becomes inflamed during an attack and diminishes when the attack subsides.
Intolerance to light and sound is much more common in migrainers than CHers, although some CHers do prefer to be in a quiet dark place. There is quite often nasal congestion and tearing from the eye on the side of the head that is being attacked. The pain is centred more on the face than on the rest of the head, specifically the eye, cheek, sinuses (which is why they are so often misdiagnosed as sinus infections). The sufferer can not function normally during an attack and quite often prefers to be left alone in order to deal with their pain. From the people I have talked to over the last year, rocking, pacing, hitting their heads to defray the pain are all common actions during an attack. This pain has been compared to amputation without anesthetic, a pain much worse than childbirth.
The attack commonly and regularly wakes victims from a sound sleep and many people cannot sit still until the pain passes. Having been a migraine sufferer myself, the motion of moving around during an attack would have been enough to nauseate me and I could NOT tolerate any light or sound and would quite often put foil wrap on the windows to block out the light and lie as motionless as possible during the 18-24 hour attack. This is NOT an option for my CHer. He can very rarely even sit during an attack and quite often gets very exhausted from pacing or just standing.
In the 14 years of my observations I only remembering him vomiting once and that was when he was prescribed Imitrex.
If you read our website and specifically the medical information site at the left sidebar on the message board, there is a much more detailed definition of CH available there.
Please consult your neurologist to accurately diagnose your symptoms. Different drugs treat different things and no one here wants anyone to be misdiagnosed or incorrectly medicated.
Just my opinion and observations.
Margi Storey