Every person is different. Every natural substance is different – every mushroom, every seed. Every cluster cycle is different, at least in detail, every time it comes around. There are always different situations, different medications used, different foods eaten, different schedules lived.
How we experience and remember things can be a problem as well. We lie most easily and often when we lie to ourselves. Keeping careful track of the details right after they happen helps us keep from fooling ourselves.
Sometimes we remember only the things that surprise us, when the ordinary is what turns out to be most important. Some times we make a guess about how things work, and then remember only the events that fit our theory, proving how smart we are – this is the infamous confirmation bias that afflicts even the best and brightest. Being careful to write down everything that happens in detail can help avoid this.
Keeping a disciplined and detailed log of attacks, cycles, medications and situations really helps some folks keep track of all the variables and make informed decisions.
KEEPING A DIARY
Many clusterheads devise their own diary or log system. It can be as simple or sophisticated as you’d like. Simply writing everything down as it happens in a spiral notebook can suffice. Some set up a form on paper, with labeled blanks as reminders of what to record, to help make sure everything is covered. Some set up a simple spreadsheet on their computers for this purpose. You could go so far as to work up a database with entry forms and sophisticated reporting.
Clusterbusters came up with a detailed and comprehensive diary for research purposes, and while it is six pages long, with two pages repeated for every attack, it makes sure everything relevant is covered for the treatment of a cluster cycle.
The two main topics to report in a cluster diary: what the attacks are like and what we do about them.
Here are some of the items to cover in a diary or log.
Describe the attack
Date and time
Length of attack
Level of pain
Location of pain
Additional symptoms (teary eye, runny nose, small pupil, etc.)
How the attack starts, peaks and ends
Environment – room temp, weather changes, altitude, location
Triggers that might be involved
Non-attack symptoms (shadows, precursors, mood swings, etc., before or after attack)
Immediate treatments used
Long-term treatments being used
Describe the treatment
Time and date
Substance, (include source, how stored, how old, other details)
Other cluster meds used, time and date
Meds for other conditions used, time and date
Non-medicinal treatments used (oxygen, ice, exercise, etc.)
Apparent psychoactive effects (trip level, narrative)
Apparent medicinal effects (describe relief, narrative)
TRACKING THE PAIN
How do you describe the pain of a cluster attack? Profanity often comes into play, and tales of terror and suffering can be powerful and poetic. But describing an attack in an objective and consistent way can be difficult.
Doctors and researchers often use a 1 to 10 scale for patients to describe pain level, but this has the problem of trying to turn something subjective and individual to a simple number that means the same thing to everyone. See VAS scale.
The KIP scale
A clusterhead named Bob Kipple devised a 1 to 10 scale to describe the special pain of a cluster attack. The scale goes beyond just assigning a number from one to ten to describe the pain, as typical pain scales do, by describing common behaviors and symptoms of clusterheads during an attack. While this is still subjective, some feel the KIP scale is more useful and relevant than simply picking a number from one to ten. Here are the KIP pain levels
KIP-0 No pain, life is beautiful
KIP-1 Very minor, shadow’s come and go. Life is still beautiful
KIP-2 More persistent shadow’s
KIP-3 Shadow’s are getting constant but can deal with it
KIP-4 Starting to get bad, want to be left alone
KIP-5 Still not a “pacer” but need space
KIP-6 Wake up grumbling, curse a bit, but can get back to sleep without “dancing”
KIP-7 Wake up, sleep not an option, take the beast for a walk and finally fall into bed exhausted
KIP-8 Time to scream, yell, curse, head bang, rock, whatever work’s
KIP-9 The “Why me?” syndrome starts to set in
KIP-10 Major pain, screaming, head banging, ER trip. Depressed. Suicidal.
The KIP scale is good for intensity, but it is one dimensional – it doesn’t indicate the total amount of suffering over time. Bob Wold of the Clusterbusters developed a system that uses the KIP scale as the basis for a system that puts a number on the total suffering clusterheads experience.
The CB Pain Tracker
The Clusterbuster Pain Tracker Scale attempts to put a numerical score on the amount of suffering in a cluster cycle. The pain tracker considers the length of an attack by giving a point score to how long the attack lasts. This is the duration factor. The duration factor is multiplied by the intensity factor, which uses the KIP scale in an exponential way – a KIP 10 is not just twice as bad as a KIP 5, it’s ten times as intense.
|Duration||Intensity points||Intensity level||points|
|1-5 minutes||5 points||1||1 point|
|6-14 minutes||6 points||2||2 points|
|15-29 minutes||5 points||3||3 points|
|30-44 minutes||11 points||4||4 points|
|45-59 minutes||16 points||5||5 points|
|60-74 minutes||24 points||6||6 points|
|75-89 minutes||35 points||7||7 points|
|90-104 minutes||50 points||8||8 points|
|105-119 minutes||70 points||9||9 points|
|120 + minutes||100 points||10||10 points|
The scores for each attack are then added together to give a daily score, and this in turn can be added up over weekly or monthly periods.
It helps to see trends and progress when making decisions, and devising charts and graphs can make it easier to help see the status of the cycle and the effectiveness of treatments. This can be as simple as graphing out the daily pain tracker score . Others show the intensity, time and duration of each attack using bars that get longer with time, and colors that change with intensity – light blue for a KIP 1 to deep red for a KIP 10 for example.
These visualization can be done day by day or even attack by attack, or can be worked up from a log or diary well after the fact. All this can be done on a scratch pad with pencil, on a place mat with crayons, or on your favorite fancy computer graphing program and laser printed in full color. What really matters is that the visualization helps you think about the disease and its treatment.
Keeping a diary is most pleasant where there is nothing to write. Charts are prettiest when blank.