Doc's Cluster Headache Journal

Monday, December 28, 2009

I Don't Use The Kip Scale Personally

Its not because I don't find it adequate mind you... its mainly because I had developed my own scale many years before hearing about the kip scale and everything in my long record is based on my own measurement. (I had clusters long before the magic of the interweb!) Converting now I'm afraid would cause more disassociation with that old pain and cause me to forget what I had really experienced. a level 3 should always be a level 3 in my mind. It will "drift" and you can't stop that with ANY pain rating system but I think changing my point of reference mid stream would be really bad for me.

My apologies if this causes confusion for any readers.

Having said all that I do like mine better because it doesn't spend as much time on the low end. It starts were I precive a bad tention headache peaks in pain and thats what I call a "one". This makes it easy for me to explain the pain to others. I have little doubt that my worst attacks have qualified as being described as 9-10 times more painful than a tension headache.

So on my scale, I tend to be conservative with assigning high ratings. Many times I have marched in circles around my downstairs at 3am repeating a mantra and beating myself in the base of the skull with a heavy object only to rate that a level 6-7. I think I have only given my self 9's a few times and I may have only used 10 once.

On my scale, 10 represents almost a mythic level of pain... believe me I know most of us have peaked into that pit. I just don't want to be casual about it... when it really happens, I want to document it. I want to have a rating that stands out and screams "that night was pure horror." So I kind of keep 10 in reserve.

I think If I was using The kip scale I would be tempted to grant myself 10s more often.

Here is what the KIP scale looks like.
Pain level 0: No pain
Pain level 1: Very minor, shadow's come and go
Pain level 2: More persitent shadow's
Pain level 3: Shadow's are getting constant but can deal with it
Pain level 4: Starting to get bad, want to be left alone
Pain level 5: Still not a "pacer" (needing to walk back and forth) but need space
Pain level 6: Wake up grumbling, curse a bit, but can get back to sleep with out "dancing“
Pain level 7: Wake up, sleep not an option, take the beast for a walk and finally fall into bed exhausted
Pain level 8: Time to scream, yell, curse, head bang, rock, whatever work's
Pain level 9: The "Why me?" syndrome starts to set in
Pain level 10: Major pain, screaming, head banging, ER trip. depressed. suicidal.

Note: Between Pain level 6 and 7, the eye on the hit side starts to tear and nose starts running.

My scale looks more like this
Pain level 0: No sensation at all (like that ever happens. I get migraines now as well so I usually got some pain in the noggin)
"Aura" Dull non painful sensation behind eye and "stupid feeling" mild confusion( "shadows?" )
Aura w/pain I will sometimes refer to these as a .5 (yes, I know that if I used KIP I wouldn't have to do that.)
Pain level 1: Approximately the pain level of a tension headache
Pain level 2: I am able to mask this level of pain and function, but it is twice what I used to consider a "normal" bad headache
Pain level 3: 3x Even though I am very well practiced, at this level I start losing the ability to "act normal"
Pain level 4: About the level of bad migraines I have experienced, urge to pace and beat self in the head starts.
Pain level 5: Pacing starts, talking to self can begin... this is when fear of a really bad attack sets in
Pain level 6: Marching, try a hot bath (placebo effect imo), full blown mantra by this point. Cursing.
Pain level 7: Trying to keep it together, marching louder mantra, screams of anger common, constant beating self in head.
Pain level 8: Nearing the breaking point, often abandon pacing and retreat to hot bath, question fairness of life.
Pain level 9: Breakdown, too much pain to take. Even a seasoned cluster veteran loses it
Pain level 10: Reserved for events to nightmarish to describe with words.

So as you can see its really similar, just a different "curve" it starts quicker and is more stingy with the ratings as they go up. I may have to go back through my blog and do a "KIP" conversion for each time I rate a cluster. (that would be a pain)

One useful tool I have found for describing clusters to people is telling them to think about an Ice cream headache. Then tell them to imagine that lasting for 45 to 90 minutes! I let them chew on that for a bit... then I drop the bomb that I would consider that about a level 2-3 at most. Of course this assumes everyone experiences those little intense throbs the same... maybe they just always hurt me more than other people... well, people seem dutifully horrified. hehe Pain will never be an easy thing to discuss.

I feel like I bought a set of wrenches and found out I needed metric. : )


  • One thing I don't see here is nausea and dry heaves. I get these at about level 8-9.

    By Anonymous Anonymous, at 11/02/2010 7:51 PM  

  • I tend to prefer your scale as I tend feel pain earlier in the scale, even if it is lower level but you know what's coming ! It's scary reading someone else's experiences and they mirror your own. It's sad to think how many people are suffering and it's relatively unknown in the medical profession.

    By Anonymous Anonymous, at 1/29/2014 7:50 PM  

  • Anonymous 1/29/2014,

    I am glad you found my scale useful. Pain is difficult to quantify. I also am saddened thinking about all the people like us out in the world. Really, that was a major motivation to start this blog so many years back. You may have noticed that I am not very active here for a while. One of the reasons is a bit of good news. I may be "growing out of" my clusters after all these years. Now, I am not ready to say that they will never come back in full force mind you (in fact I had a short run of attacks that peaked around 4 just a week ago) and I have not made a full post as if it would jinx my run... but I may have reached that magic age that is often reported when they start to tapper off. So, I want drop you a personal note to HANG IN THERE! I can tell you from my experience at least that there is a good chance things will improve.

    By Blogger Murdock Scott, at 2/01/2014 11:02 AM  

  • I haven't had an attack for 8 years now. I was told that my clusters would taper off and disappear. I never thought that it would happen but here I am pain free.
    Never give up hope folks.

    By Anonymous Anonymous, at 7/20/2014 6:42 AM  

  • Hi Doc,

    Long-time CHA guy here (since 7 years old, and I just celebrated #68 yesterday :-)

    Used by hospital ER folks, the KIP does have some shortcomings. CHAs cannot be compared to a regular tension HA or migraine (...sleep it off, no way).

    I relate to your ice headache analogy, but additionally I add "if you've ever hit your funny bone..., take the burning sensation and add it to the ice headache." That usually gets the attention of the ER tech, so I can get the O2 without delay. I add to my testimony, that "I wouldn't be here for something less than a 10"

    Sometimes my CHA episodes last 8-10 hours, and on occasion longer. After my 55th (or so) birthday I've had some remission, sometimes lasting for several years. Mine are seasonal--usually September - Jan, but sometimes exactly opposite May - July... go figure :-) After three years off for good behavior, mine just started again today :-(

    The good news, like you relate Doc, they are tapering off--the length of the episodes that is, and fewer 10s!

    Best wishes to all Cluster Heads. If it weren't for the periodic remission, I'd be seriously considering one of the new procedures that alter the blood supply to the affected area, until then it's lydocaine, pepper, neosephryne, or other assorted astringents... up the nose, Ice packs on the head, feet in ice water, Oxygen (15 ml or more) at the ER, walking aimlessly around the neighborhood holding my head in a pressure squeeze, or any combination of any/all of the above followed with caffeine and aspirin in varying doses :-)

    Best wishes to all! Bob

    By Anonymous Anonymous, at 8/31/2014 2:51 PM  

  • Anonymous, at 7/20/2014 6:42 AM,

    Yes, Yes, and more YES! Great to hear more stories like this! Sometimes people don't have attacks for a few months and get overzealous about some treatment working... and I sometimes caution to not get their hopes up... but eight years is defiantly a WIN!!! Congratulations! ONE thing I firmly believe, is that they DO END!!! and if we all just hang on, we can make it though this thing! Thanks for sharing your story and giving people who find their way here some hope.

    By Blogger Murdock Scott, at 10/21/2014 11:57 AM  

  • Bob,

    I like adding the description of hitting your "funny bone". Especially when I was younger there was what I used to refer to as a "buzzing" component to a cluster attack that was nearly impossible to make people understand. It was part of the thing that forced me to move and pace. Hitting that collection of nerves we refer to as the "funny bone" may be the closest thing I have ever experienced to that element of a cluster attack. So yes, I like it a LOT, extra Strong "Brain Freeze" pain that lasts a very long time and the added feeling of hitting your funny bone if it was located in your head... No wonder we can't think or function or do much of anything during a bad attack!

    I am so glad to hear that your attacks are tapering off and thanks for sharing it! These are the stories that people suffering need to hear, that their IS a light at the end of the tunnel. After such a long run of them, I sure hope they end entirely for you... and soon.

    By Blogger Murdock Scott, at 10/21/2014 12:22 PM  

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