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Modified KIP scale? (Read 5480 times)
ClusterChuck
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Modified KIP scale?
May 19th, 2009 at 1:15am
 
I know that those of us that knew Bob Kipple and his lovely wife Judy, will always feel honored to have known them.

And I know that his KIP scale has been a GREAT tool for us to use, BUT, some are rather confused by it.  TedTheBear has come up with his suggestions as to a new KIP scale.

I would NEVER demean or lessen the impact that Bob's scale has been, BUT, Ted has some good ideas (I think).

SO, what I am proposing is to add Ted's ideas onto Bob's scale.  I think this newer version might help to eliminate some of the confusion that many of the newbies have with the scale.

What do you think?

CLUSTER HEADACHES PAIN SCALE


Here is Bob Kipple’s pain scale, with further clarification by TedTheBear in italics.

Pain level 0
No pain, life is beautiful

SHADOWS

Pain level 1
Very minor, shadow's come and go. Life is still beautiful
Pain is barely noticeable. Just a minor ache!

Pain level 2
More persistent shadow's
Pain is now noticeable. Similar to pressing your temple against the edge of a wall!

Pain level 3
Shadow's are getting constant but can deal with it
Pain is increasing and beginning to nag. There’s a dull warm feeling and some pulsing. Able to function; however, it is a definite distraction!

LOW LEVEL PAIN

Pain level 4
Starting to get bad, want to be left alone
Pain is increasing and a burning sensation is beginning to set in. Ability to function is still there, but there’s a need to want to be left alone. There’s also a desire to press the hand over the area of pain. There may some tearing of the eye, stuffed nostril, and nose drip from this point on!

Pain level 5
Still not a "pacer" but need space
The pain and the burning sensation continue to increase, and the ability to function is now limited. There’s a definite need to hold the area of pain. There may be some rocking!

MID LEVEL PAIN

Pain level 6
Wake up grumbling, curse a bit, but can get back to sleep with out "dancing"
The pain is now very sharp and the burning sensation is likened to heated fork or skewer pushing against temple and eye area. There’s a definite need to rock and/or pace from this point on!

Pain level 7
Wake up, sleep not an option, take the beast for a walk and finally fall into bed exhausted
The pain continues to intensify! The burning sensation is as if the heated fork or skewer has penetrated into the skull, but not through it. It may feel as if the pain is spreading to the cheek and jaw area – like a bad toothache.

HIGH LEVEL PAIN

Pain level 8
Time to scream, yell, curse, head bang, rock, whatever work's
Pain is reaching an unbearable plateau. The burning sensation continues to intensify, and now feels as if the eye-ball is being pushed out from its socket. The pain to the cheek and jaw area now feels like a severe toothache!

Pain level 9
The "Why me?" syndrome starts to set in
Pain is unbearable! The feeling is that of someone reaching in and trying to pull the eye-ball from its socket, along with the cheek and jaw (the entire side of the face!).

INTENSE LEVEL PAIN

Pain level 10 (MAXIMUM level)
Major pain, screaming, head banging, ER trip. Depressed. Suicidal.
There’s nothing that can compare to the pain felt - they’re dangerously intense! The feeling is that of the whole side of the head being ripped apart from the inside out! There will be rocking, pacing, screaming, punching, kicking, head banging into the wall, running in an attempt to escape the pain, possibility of violence, possibility of black out, suicidal thoughts, and a trip to the ER.



So what do you think of the modified KIP scale?

Chuck
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Lefty
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Re: Modified KIP scale?
Reply #1 - May 19th, 2009 at 6:14am
 
Yup..!

I think they both work very well together. The added information allows for a better distinction between the intensity of the pain levels on each Kip level. This new scale would allow for people to better explain their levels of  pain whilst seeking advice and also in a lot less words.


Lefty...!
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McGee
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Re: Modified KIP scale?
Reply #2 - May 19th, 2009 at 9:02am
 
works for me, a lot better defined and easier to understand.
just need to translate that into german for my Doc lol

mark (thats my weekend gone, more homework lol)
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Kate in Oz
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Re: Modified KIP scale?
Reply #3 - May 19th, 2009 at 9:07am
 
I agree, I think that the extra information is helpful.  I must say tho' reading through it was almost enough to trigger a hit for me.  It is all in my head  Shocked

I particularly think the low/mid level pain info could be helpful in explaining to others - or just figuring out where you are at.  Most of my hits are night time ones so often I'll wake at a 5/6 and it will escalate in no time at all to a 8/9 or whatever so... for that purpose it just frikken hurts!      

For mine, I think the more info the better.  (Considering it can take so bloody long to be diagnosed - over 10yrs for me - these sort of descriptions can be helpful).

Kate

P.S. pls excuse bad english - brain's gone to mush
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DennisM1045
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Re: Modified KIP scale?
Reply #4 - May 19th, 2009 at 12:46pm
 
Well when I first read the title I thought ... here we go. 

But now that I've read through it twice I have to agree that this added descriptions help a lot.  Nice job Ted.  Thanks Chuck for pulling a good idea into the light of day.

-Dennis-
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Chris Morrow
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Re: Modified KIP scale?
Reply #5 - May 19th, 2009 at 1:01pm
 
Well done! It looks like a great addition to the scale.
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Re: Modified KIP scale?
Reply #6 - May 19th, 2009 at 3:51pm
 
Nice job of description Ted.  It doesn't qute match up to my symptoms, but it does flesh out the pain levels a bit more thoroughly.

Jerry
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Re: Modified KIP scale?
Reply #7 - May 19th, 2009 at 5:27pm
 
Chuck (Ted),

not often I disagree with you……. (on cardinal issues)

BUT

The “old” KIP scale is a very good, comprehensive and straightforward tool,
that dose not need mending, changes, or modified to fit someone’s (or more)
needs, or as you say  to eliminate confusion that many of the newbie’s
have with the scale….  I was a newbie (about) 4 years ago, and if
I didn’t understand something about the scale, I have asked one or more of the
more “senior” members, and always got an answer…. or help with the thematic….

To "create" a new or "modified" scale is to reinvent the wheel…..

It is the same as with some posters that, at times extend the scale (pain level higher then 10),
something I find somewhat questionable, we should not change the system, in this case the KIP scale, just so we can fit it to our wishes or interpretation as we go.

Michael
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wildhaus
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Re: Modified KIP scale?
Reply #8 - May 19th, 2009 at 5:34pm
 
McGee wrote on May 19th, 2009 at 9:02am:
need to translate that into german for my Doc lol

mark (thats my weekend gone, more homework lol)


I think I have it in "DEUTSCH" will be at home on Sunday and will look it up..... and send it to you.....
so your weekend will not be gone.... should be very nice weather....

Michael
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karma
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Re: Modified KIP scale?
Reply #9 - May 19th, 2009 at 7:57pm
 
Why not?
Before the kip scale there was nothing. If a couple more words will comfort someone and understand the malady a bit more why not?
I never met Bob but I'me sure he would appreciate the effort if it is helpfull.
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Re: Modified KIP scale?
Reply #10 - May 20th, 2009 at 6:19am
 
I have to say that i do disagree with this totally.
The original is more then good enough

Svenn

One that are proud to have met both Bob and Judy in person
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Re: Modified KIP scale?
Reply #11 - May 20th, 2009 at 7:58am
 
Ok, this is me being diplomatic...

Kip wrote this scale about 10 years ago and it's served us well for a long time. I agree with Michael - we don't need to re-invent the wheel. It beat the happy/sad faces in the doc's offices and gave us a "scale" to go by.

I commend Ted for trying to explain it to newbies, but Michael is right again - ask questions and get answers. I think the scale explains itself and follows the principal of KISS (Keep it SHort and Simple).

What would Kip say about it?  "Don't sweat the small stuff - and most things ARE small stuff!"

Hugs BD Kiss
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Re: Modified KIP scale?
Reply #12 - May 23rd, 2009 at 1:29pm
 
The new list is going to be helpful for me for my teens to understand what I mean when I'm at a certain level.  I posted the KIP scale on my fridge for them to refer to when I realized this trip wasn't going to end as soon as the others and have explained to them what each level is like when I'm hitting them.....but when I spike up fast and they get worried all I have to do is say 7-8 and they know, and don't worry as much as they already do.  Now these are two teens that have seen this before, and are learning quick how to help mom...but they're still kids who get scared when I go downhill fast. 

The list may be helpful for other newbies who have kids/tweens/teens who don't know what is going on.
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E-Double
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Re: Modified KIP scale?
Reply #13 - May 23rd, 2009 at 1:42pm
 
The reality is that PAIN is relative to the INDIVIDUAL.

The explanations are very good in that not all curse, run, rock or bang.

Some can be at a very high level and zone out.

A few saw me get wholloped while out at a nightclub a few years back during a convention. I geared back and zoned and pumped my leg while they ran for ice and other shit.
My eye was like kwasimoto but if I tried to say that I was at a 8 or a 9 someone would have said no way.

So whether it be tolerance levels are different or coping mechanisms are different,  a little verbiage can not hurt and it doesn't disrespect Kip either.

E
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Re: Modified KIP scale?
Reply #14 - May 23rd, 2009 at 1:47pm
 
I've never been the head-banging type, but I've started the rocking around when they hit.  It's become more of a meditaion thing though I rock through the pain to deal with it.  The kids know that if I'm standing up and start rocking side to side and I don't realize I'm doing it look out mom's spiking  Cool

I think everyone has a different pain tolerance and different pain........but I gotta say from what I keep seeing on the boards and in research during this trip we are some of the strongest people I've ever had the experience of knowing!!!
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Re: Modified KIP scale?
Reply #15 - May 23rd, 2009 at 3:05pm
 
I say we keep it the way it is.....Lenny
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Re: Modified KIP scale?
Reply #16 - May 23rd, 2009 at 9:13pm
 
Looks pretty sensible to me and you know what they say, without change we would never move on.
Colin.
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Re: Modified KIP scale?
Reply #17 - May 24th, 2009 at 8:07am
 
To change with change is the only truly changless state.

I dig it.
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Re: Modified KIP scale?
Reply #18 - May 24th, 2009 at 2:58pm
 
DeStijl wrote on May 24th, 2009 at 8:07am:
To change with change is the only truly changless state.

I dig it.


It is not about you, or any one of us….. as a single person, it is about us as a community
it is about the Dr. and nurses, and so on, to get them to use and think in kip scale took a very long time and now to say we need to adjust the scale is just not practical….. it is not
that simple to educate a Dr. or for that matter a clinic…. or more…….

Michael
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Re: Modified KIP scale?
Reply #19 - May 24th, 2009 at 3:47pm
 
I first joined the old board in 1999, but never had the priviledge of meeting Bob and Judy Kipple, although I read a lot about them.  Bob's scale helped me tremendously through that first cycle,although I wasn't sure what level I was reaching sometimes, particularly with the description of Level 6.  I read that scale as being woken with a hit, but being able to go back asleep.

I remember posting something about getting hit but able to doze back off somewhere around a level 3 or 4, and was blown out of the water by several members that this was impossible.  When I pointed out Kip scale 6 and said that even Bob was able to go back to sleep at a level 6, I was told that what Bob meant was that he was able to go back asleep after the hit ended.  This is not said in the description of level 6, so this was confusing to me.

In my opinion, I don't think the addition of further definition of each level would in any way demean the contributions that Bob gave to this site.  I think the more information provided, the more a newbie can attempt to learn about where he/she is at in a hit, and the better to be able to log into his/her journal with more accuracy. 

We all know that our pain tolerance levels are different, and the Kip scale is a tool to help us determine where we are in a hit.  The added description of these levels cannot hurt anyone, and may help many.

Sandy
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Re: Modified KIP scale?
Reply #20 - May 24th, 2009 at 3:55pm
 
[/quote]

It is not about you, or any one of us….. as a single person, it is about us as a community
it is about the Dr. and nurses, and so on, to get them to use and think in kip scale took a very long time and now to say we need to adjust the scale is just not practical….. it is not
that simple to educate a Dr. or for that matter a clinic…. or more…….

Michael [/quote]

And, Michael, I've read through the original post three times.  I do not see where Bob Kipple's scale had been "adjusted" in any way.  His scale has been expanded with further definition.

You know I love you, just don't agree with you on this one.

I'm sorry.

Sandy
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Re: Modified KIP scale?
Reply #21 - May 24th, 2009 at 9:44pm
 
Sandy_C wrote on May 24th, 2009 at 3:55pm:


 I do not see where Bob Kipple's scale had been "adjusted" in any way.  His scale has been expanded with further definition.

You know I love you, just don't agree with you on this one.

I'm sorry.

Sandy
[/quote]

Exactly! Thanks.
Please note that this is NOT a re-invention, nor is it a modification or adjustment, and it definitely is NOT a replacement (I wouldn't dream of such a thing!). It's merely to "serve" as an EXPANSION, as Sandy has said.
It was only after giving it much thought, and consulting with a board member as to its usefulness, that I decided to expand upon the scale. I did this scale because there were many on this board that apparently didn't know what is was like to experience a Kip 10 - you can read some of my posts on other threads about this. Pain -  relative? Please, give me a break here, huh? Ever had your finger nails ripped off, one at a time? No? Then you have NO argument. That's pain! Kip 10's are worse than that - I KNOW! So, no, one person's Kip 10 is NOT another person's Kip 5. There has to be a base line from which to operate, and Kip has given us that. All that I did was add the x,y (algebra anyone?) to it.
Ted
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Re: Modified KIP scale?
Reply #22 - May 25th, 2009 at 1:58pm
 
Great job Ted... Expanding on the KIP Scale in this case is brilliant. I found the original to be very confusing.

Tony
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Re: Modified KIP scale?
Reply #23 - Jun 2nd, 2009 at 8:25pm
 
Thank you for explaining the scale a bit more. I've only recently been diagnosed with CH and I've been trying to learn as much as I can. I've been trying to figure out the kip scale but after reading it over and over I couldnt understand after a certain point. That is because certain levels it explains about being woken up from the attacks. Well I personally very rarely get an attack while sleeping. My attacks come everyday during the middle of the day. So I dont know which ones would wake me up or which ones I'd be able to go back to sleep after. So thank you very much because I now understand completely.
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Re: Modified KIP scale?
Reply #24 - Jun 2nd, 2009 at 10:38pm
 
Very good revision and changes to the original. 

Thank you.
Langa
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