Hi everyone

Last time I was here (back in 2012) I posted about a 5 point pain scale I was using (see clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1326845269). Since then I've found that I'm missing resolution at the top end of the scale, so today I want to post about a newer version I'm using which has 6 points. Here it is:

Level 1: Minor (shadows). Can be ignored.

Level 2: Starting to get bad so want to be left alone. Will not wake one from sleep.

Level 3: Considerable pain. Sleep not possible. Rationed medication (eg sumatriptan) should be considered.

Level 4: Rocking, pacing.

Level 5: Swearing, groaning, sobbing. Nose running/eye tearing.

Level 6: Major pain, screaming, head banging, ER trip. Depressed. Suicidal.

I'm not trying to convince people to switch away from the Kip scale. This is just something that I use myself that I wanted to share. What do you think?

Nick
PS. While writing this I found an alternative 10 point pain scale which has a similar curve to mine where it starts quicker and is more stingy with the ratings as they go up. It's at cluster-headache.blogspot.co.uk/2008/10/i-dont-use-kip-scale-personally.html

Certainly we all use the Kip scale here, it's just so convenient because we all know it and can immediately relate, but there's every good reason to have your own little system as well.

Personally I use my Kip & Cope scale - the Kip being the level of pain and Cope being my ability to deal with it.

When my Cope is up I can waltz through any number of monster hits, but when it's low a couple of lousy little Kip-6s can leave me devastated. My priority during a cycle isn't worrying about Kips but maintaining and improving my Cope.

Thanks for posting your thoughts because everything that helps you might also help a fellow CHead.

Only better daze ahead,

Brian down under.

I like it!  Actually, there are a lot of us here who DON'T use the KIP scale, including me. With all due respect to KIP, it isn't generalized enough--too specific to his personal reaction to CH. Do we all start pacing and "dancing" at level 6? It does the job here on a forum, where we usually get the drift when someone refers to it. Neurologists tend to use a 10 point scale, which I prefer when I'm describing pain to a professional. They take me much more seriously. But your 6 points are perfect for many. I think everyone should have their own scale. So great idea.

^^^ I agree with all three above. One thing I believe is any pain scale used is subject to an individual's pain tolerance. And being a former EMT / Ski Patroller I'm familiar with and understand this. I must say I do like the "KIP & Cope" idea. I know I usually find myself using a 'range', i.e. 3-5 or 7-8, when I'm taking/keeping notes.

I would imagine that we could have as many pain scale definitions, as we have sufferers.

In discussing pain scales, I am reminded of people who have posted things here, like:
- "I am in the middle of K-10 as I type this."
- "I have Kip 11's - they are way worse than what you people describe as a 10."

Their pain scale definitions just don't fit my experiences with CH's.

Remember that if your personal pain scale works for you, that's all that counts.

Marc

From what I've read on a pain scale from 1-10
you pass out when the pain reaches a 10, which 
has happened to me when writhing on the floor
or on the bed, bum in air, and hands on head,
with a full blown CH. Therefor I judge an 8-9
on the pain scale as the most pain you can take
without passing out.

Hoppy

This discussion reminds me of a story…imagine that?…..
I once worried about randomly telling stories, but my Father used to tell me “be yourself”….so, anyway: Back in a previous lifetime I managed a crew of 16 sanitation workers…. all Asian guys…..none over 5’5”…and I’m 6’5” in boots…so our group photos were hilarious…. me, the circus freak in my white coveralls.

These guys were good…REALLY good…and it made me look really good….and for a time I took it for granted…. until one day it struck me…HEY, these are Laotians, Cambodians, Thais, Vietnamese, Chinese, who knows what else…and most of ‘em barely spoke English!  How are they possibly doing such good work in a job requiring meticulous cooperation and coordination?????? So… I asked my guy,  their Chinese supervisor (from Vietnam) ….HOW do you coordinate all this???? He looked at me like I suspect folks in other countries look at “Americans” who can only speak ONE language and said: “we all speak Cambodian…is business language!” Haaaaaaaa! BTW…this same man spoke 5 other languages…it put this colidge gradjiate to shame….

All that to say….a group…of any sort… needs a “common” language. For years now we’ve used the KIP scale here. It works because we all have therefore a common reference point. Not to say it worked to describe all of our situations. It didn’t quite meet mine…maybe not yours…but compromises must be made. I have no problem whatsoever with anyone coming up with what works best for them…but, again…what does your 3 or 5 or 4 mean? If it aint consensus… it aint workin’ here.

And one more thing…..previously discussed but worth reiterating….CH tends to skew your personal “pain scale”. Things that put “regular” folks in bed or misery can frequently be nagging nadas to a clusterhead. Broken bones, gunshots, cuts, bruises, auto wrecks…whatever….so when talking to a medical professional, I personally double and add 1 to whatever I think I’m feeling on a 1-10 pain scale…. even then I’m not sure it’s enough……..

Best

Jon

   I like stories! Wanna hear another? I think the Kip scale can be a self adjusting scale. Back before O2 came along I used to run a cluster off, usually in the middle of the night. Started using oral Imitrex to get through the night and it worked but I started getting worse and worse wake up calls in the morning.  Like most of us, I had already gone through too many cycles with nothing to alleviate the pain so I was very familiar with pain and back then I'd say I had my share of 9's or 10's.  Well that particular cycle taught me something about pain.  Those rebounds were starting to take a toll on me and then one morning the ch I woke up with...... well everything I might have called a 9 or a 10 before just got dropped a notch or two. I quit the Imitrex for rest of that cycle and rode it out.                                                                                                                                                                                                

        Today I can say I've only had one 10 in my life and if I ever have another like it..... I won't.

               Sean                        

Brian,

Excellent point!

Hi ya, Jon! Glad to see you! Great story and excellent point to it. If we don't use something consistent nobody knows what another is talking about. I personally stay with the Kip scale. It doesn't fit me exactly, either, as I don't swear, so that leaves out a whole number if you want to be picky. On the other hand, I know full well what Bob referred to, and I know the feeling, so that number just got put back in.

If you are in the middle of a Kip 8 or 9, even though it is YOUR Kip 8 or 9, we all have a pretty good handle on what you are facing. If you use another scale, no matter how accurate it is for you, and you try to say you have a 5.5 on a 6 no one has a clue. AND, if you have that 5.5 on a scale of 6, you won't be in any condition to try to explain the intricacies of your scale. Medical people will be even more confused, since they use that 1-10 thingy with the smileys and frownies that is totally subjective based on "the worst pain you have ever experienced." After all, if you have never had anything worse than an ingrown toe-nail, a smashed thumb is going to be extremely severe. The key to Bob Kipple's scale is its transferability, even if the levels don't exactly match up to your experiences.

As an example, I now consider K 4's as shadows. No, I didn't say I consider shadows as K-4's. There is a difference! I've had this mess so long now that under a K-4 I don't even notice I'm getting hit, and if I have something going on I may be sitting there with my legs bouncing and practically dancing in my seat without even consciously noticing I'm in pain. Sure, I am, but I've learned to block it out. However, the physical manifestation says K-4, and when I stop to notice it, it is indeed a K-4.

My Neuro and my GP have both seen me with a K7 or K8, which brought my GP to tears, and they have learned the Kip Scale for use with other clusterheads. (Their hand sanitizers trigger me.) When I told them about breaking a toe on Sat. night, but wearing wing-tips to church on Sunday, and that was about a level 5 they got the message, but they also got an understanding of the scale by observing my reactions.

For what it's worth.  ;D As long winded as I am, maybe I ought to write a book or something. :D

Jerry