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Message started by ClusterChuck on May 19th, 2009 at 1:15am

Title: Modified KIP scale?
Post by ClusterChuck on 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

Title: Re: Modified KIP scale?
Post by Lefty on 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...!

Title: Re: Modified KIP scale?
Post by McGee on 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)

Title: Re: Modified KIP scale?
Post by Kate in Oz on 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  :o

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

Title: Re: Modified KIP scale?
Post by DennisM1045 on 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-

Title: Re: Modified KIP scale?
Post by Chris Morrow on May 19th, 2009 at 1:01pm
Well done! It looks like a great addition to the scale.

Title: Re: Modified KIP scale?
Post by Callico on 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

Title: Re: Modified KIP scale?
Post by wildhaus on 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

Title: Re: Modified KIP scale?
Post by wildhaus on 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

Title: Re: Modified KIP scale?
Post by karma on 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.

Title: Re: Modified KIP scale?
Post by The Mad Viking on 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

Title: Re: Modified KIP scale?
Post by BarbaraD on 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 :-*

Title: Re: Modified KIP scale?
Post by jesbri on 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.

Title: Re: Modified KIP scale?
Post by E-Double on 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

Title: Re: Modified KIP scale?
Post by jesbri on 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  8-)

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!!!

Title: Re: Modified KIP scale?
Post by Lenny on May 23rd, 2009 at 3:05pm
I say we keep it the way it is.....Lenny

Title: Re: Modified KIP scale?
Post by cavalier on 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.

Title: Re: Modified KIP scale?
Post by Perediablo on May 24th, 2009 at 8:07am
To change with change is the only truly changless state.

I dig it.

Title: Re: Modified KIP scale?
Post by wildhaus on 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

Title: Re: Modified KIP scale?
Post by Sandy_C on 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

Title: Re: Modified KIP scale?
Post by Sandy_C on 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

Title: Re: Modified KIP scale?
Post by TedtheBear on 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

Title: Re: Modified KIP scale?
Post by Artonio on 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

Title: Re: Modified KIP scale?
Post by CaseyBart on 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.

Title: Re: Modified KIP scale?
Post by Langa on Jun 2nd, 2009 at 10:38pm
Very good revision and changes to the original.  

Thank you.
Langa

Title: Re: Modified KIP scale?
Post by Langa on Jun 2nd, 2009 at 10:50pm

E-Double wrote on 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


Yes, I remember that time.  Between Pepa, Sandra and myself we did get some ice.  I think I might have whisperd in your ear "If you wanna go, we're out of here, just say the word"  

Well, after about 10-15 minutes you wanted to dance so I knew all was well.

Love ya,
Maria  

Title: Re: Modified KIP scale?
Post by wildhaus on Jun 3rd, 2009 at 2:44pm
Ted.......

Loudness is the quality of a sound that is the primary physiological correlate of physical strength (amplitude) as sensed by the individual.   Therefore, unlike sound levels that can be objectively and accurately measured in physical terms expressed in decibels (dB), as a sensory input perceived by an individual’s ears, loudness is a subjective measure!  

Pain is somewhat the same as loudness, a very subjective sensation.

Pain, in the sense of physical pain is a typical sensory experience that may be described as the unpleasant awareness of a potentially harmful stimulus such as heat, cold, pressure, etc.

Individuals perceive and express pain differently, so it to is a highly subjective measure.

A definition that is widely used was first given as early as 1968 by Margo McCaffery to describe pain in the following:  "Pain is whatever the person experiencing it says it is, existing whenever he says it does".

Bob Kipple went to a lot of effort and was very clever in the way he developed the Kip Scale.  He developed it as a method of describing cluster headache pain levels that expresses the magnitude of the physical “stimulus” and “quantity” of pain in terms relative to a reaction to the pain rather than it’s specific acuteness and intensity or it’s exact location.   He did this because he knew we each experience pain differently.

In a way, pain levels are almost logarithmic nature ( like the Richter scale) that enables a very large range of ratios to be represented by a convenient number in a manner similar to scientific notation.  This allows one to clearly visualize huge changes of some quantity.

Now to the CHANGES you have put in..... or to your subjective interpretation of the scale and pain, carving your experience onto stone.....

Original example from Kip Scale

“Time to scream, yell, curse, head bang, rock, whatever work's”


your interpretation and change

“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!”

you have taken the paradigm and put your experience to explain the “formula” and with that you have limited the ability to adjust the scale to the individual perception….. I never experience toothache! or any cheek pain! but I do rock….. and I curse….. and “HUG” MY O2 TANK……

with your “expansion” you try to frame and explain the level as seen trough your “glasses” ignoring the possibility that for the same level some might experience different sensations……..

And that is a change…. that is reinventing…..  that is rewriting!!

I believe Bob Kipple was very claver and thoughtful by staying away from explaining pain or describing it, he rather used the reaction to the pain.... in terms we all understand and can relate to.


Now to your some what questionable or poor use of words……
“Pain -  relative? Please, give me a break here, huh?”

Pain is relative! you might possess some knowledge that most, or all of us
have missed, and I would love to get some insight to that knowledge…….
but until then pain is still very individual and very subjective, and there for
relative…….

In closing, I'd say the Kip-scale as Bob Kipple developed it is just fine and good enough.  I say that because in many cases, better is the evil of good enough...  in trying to make it better, you may have fallen short.

Michael

Title: Re: Modified KIP scale?
Post by gizmo on Jun 3rd, 2009 at 3:11pm

wildhaus wrote on Jun 3rd, 2009 at 2:44pm:
Now to your some what questionable or poor use of words……
“Pain -  relative? Please, give me a break here, huh?”

Pain is relative! you might possess some knowledge that most, or all of us
have missed, and I would love to get some insight to that knowledge…….
but until then pain is still very individual and very subjective, and there for
relative…….


One thing I want to add to that:
Not only is pain relative between individuals it even is relative compared to our own experiences since these lead to changing pain thresholds.

Oliver

Title: Re: Modified KIP scale?
Post by Lefty on Jun 3rd, 2009 at 3:38pm

wildhaus wrote on Jun 3rd, 2009 at 2:44pm:
Now to your some what questionable or poor use of words……


Michael you sound like the old boring, pompous teacher whose classes we all loved to skip at school. I really hope you are not employed in PR.

Your post seems to imply that this thread is a direct attack on the work of Bob Kipple. I didn't know the man but from listening to others on this board he sounded like a true gentleman. I used to think I suffered from Kip 10's on a regular basis until I read a post from Chuck stating that they are a rare and unique experience. From listening to Chuck and Ted on the same thread discuss a Kip 10 I  realised that maybe I haven't suffered a kip 10, in actual fact, I know I haven't. I have  probably only peaked at kip 9.


I am one of the people who has found that this discussion on the revamped kip scale has clarified a few queries that I may have had. I would like to thank Ted and Chuck for highlighting what a real kip 10 is like to experience.


Lefty...!


Title: Re: Modified KIP scale?
Post by Callico on Jun 3rd, 2009 at 4:57pm
Lefty,

I am not picking a side in this argument, but I must take issue to a degree with your characterization of Michael as "boring".  I don't for a minute think you were trying to attack him, but I think you were a bit off base.

Michael has not been posting a lot lately, and I recognize you are fairly new to the board, so you have not had the opportunity to know him nor from whence he speaks.  He is one of the deep thinkers on this board, and when he does post you can count on it having a great deal of thought behind it.  Intellectually he puts me way in the dust, and I can usually learn something from his posts even when we disagree, which is somewhat frequently, but rarely will you hear that from me on this board.  In my estimation, for what that is worth, I rank him up with Bob Johnson and a couple of others.

That said, Ted, I don't disparage your clarification of the scale.  As far as I'm concerned if it helps someone express their situation more power to them.  I was quite happy with Kip's scale, and that is what I will use as a reference point myself, but then that is what I've grown accustomed to for several years now.

As another member who hardly ever posts anymore (and I miss him!) said, "Take what you need, and leave ther rest."

Title: Re: Modified KIP scale?
Post by Lefty on Jun 3rd, 2009 at 7:00pm

Callico wrote on Jun 3rd, 2009 at 4:57pm:
 He is one of the deep thinkers on this board, and when he does post you can count on it having a great deal of thought behind it.  Intellectually he puts me way in the dust.


Jerry

Michael may very well be articulate and intelligent but I do find he uses these gifts in a very condescending manner. He has previously stated on this thread how he feels about the concept of a new kip scale. Why did he feel the compulsion to come back for seconds and in my mind have a go at Ted for daring to initiate a discussion on a revamped kip scale.

On other occasions I have seen this condescending tone and in his first reply to one of my earlier posts he began his reply by insulting me and my fellow country men. Not exactly what I would call the hand of friendship as we all suffer from the same infliction. Yes we may not all agree on certain issues, but state your objection and move on, it doesn't have to become personal.

Jerry you are correct,  I am a newbie to this site and I am still learning how to interpret posts properly as it can be a mine field at times. Michael has every right to post his thoughts and feelings and I know that it is my problem that I take umbrage with his manner. I will learn to ignore his posts as it is impossible for us all to get along like some Disney film.

And Jerry there are not many people on this board that can put you intellectually in the dust, OK, maybe Bob Johnson, but hey, were all in there with you.


Lefty...!

Title: Re: Modified KIP scale?
Post by stevegeebe on Jun 3rd, 2009 at 7:14pm
I'm okay with it as it is.  I've had enough change for now.

Oops.

They hurt like something from hell.

Steve G

Title: Re: Modified KIP scale?
Post by swimchica623 on Jun 3rd, 2009 at 7:20pm
I like that the additional words describe things a little bit more objectively and less subjectively...as best as you can do this anyway.  The new wording is certainly more helpful to me.  It describes the different levels and I like how they are grouped too.  Sometimes I'll have trouble getting an exact number and I'll be like...6? no 5...no...7?  because I am just so tired of it all...but I think the fact that it is in that category is more important because the symptoms occuring at that level are important...they only get worse or whatever by certain degrees.  
The grouping and objective descriptions also helps me know exactly what to do when...since getting under better control I have had far more lower level and shadows than before...and its a question of whether or not to treat.  I don't like to if I don't have to, but this tells me that maybe if I am putting my hand to my eye, can't really function great more than saying a few short sentances....yeah that isn't a shadow even if I say it is.  Like Eric said...pain is related to the individual.  I will...out of sense of denial or whatever reason I may have, say that I am not doing whatever Bob Kipple's scale said.  But if I am hurting so bad that I am not speaking well, cannot resist putting my hand up, etc....I go to a 4 and (according to how I treat myself) really should hit the o2 for a bit.  
Just my humble opinion of course...but this is great for me, thanks!  :)
Lisa

Title: Re: Modified KIP scale?
Post by midwestbeth on Jun 3rd, 2009 at 7:37pm
I think the added notes to the kip scale help to better understand each level of pain.  Thank you Ted and Chuck.

Beth

Title: Re: Modified KIP scale?
Post by TedtheBear on Jun 4th, 2009 at 12:06am
Ahem! This seems to be getting personal. Is there truly a need for that? Frankly, I don't have the time, nor am I willing to make any to do that sort of thing - I WON'T go there!
I rested my case in my earlier post (to which I got quoted, but not answered - how interesting!). I have nothing further to add.



Title: Re: Modified KIP scale?
Post by wildhaus on Jun 4th, 2009 at 4:53am
Ted and Laefty,

I am sorry if you feel I have attacked you personally!
In no way I have the interest or the desire to engage in personal
mud slugging........ nor did I think that this thread is a direct attack
on the work of Bob Kipple!

If my post has invoked in one of you that impression, that I am on some sort
of personal vendetta crusade, I do apologize!

All I was trying to express is simply my objection to the suggested changes!

I am all for a discussion, for better understanding, and searching for better ways
to convey what we feel, and go trough......

My objection is simply based on the simplicity and cleverness of the way Bob Kipple developed the Kip Scale.  He developed it (the way I see it) as a method of describing cluster headache pain levels that expresses the magnitude of the physical “stimulus” and “quantity” of pain in terms relative to a reaction to the pain rather than it’s specific acuteness and intensity or it’s exact location.

Bob Kipple (I believe) intentionally took the subjectivity and used objective reaction to the various pain levels we experience….

The way Ted (and Chuck), describe the sensations’, and translate the deferent levels might reflect what they feel and sense, which is very subjective, and there for apply in a very limited way, where as the Kip scale by avoiding subjectivity and there for applies to a broader “audience”, if not to all…….

I do find the effort to explain the kip scale as an interesting effort, and engaging in a
discussion is very important, we all can benefit, learn, and understand better what we all
go through…….


Quote:
“Michael you sound like the old boring, pompous teacher whose classes we all loved to skip at school. I really hope you are not employed in PR….. “

No, I am not in PR…..  

I do go very often over the various boards and read and try to
learn…. try to find deferent angels and thoughts, try to educate my self, regardless if I agree or understand the post, no post is ridicules’ or stupid or useless! (yes, some of the
“I have a cure”, by venders of dubious remedies are ridicules….)
Every bit of knowledge, know how and experience is important, and needs to be posted, if I don’t understand I will ask, if I disagree I will voice my opinion….. and try to present my opinion in a mannerly way, backed by facts, my personal understanding….. or personal experience…..

The times I allow my self get carried away are when politics, Israel, and racism are involved! and that is why I mostly try to avoid the topics…. and limit my self to CH…


Ted and Chuck, as I said your initiative is interesting! but I do find my self, still objecting
and “I feel the compulsion to come back for seconds” to voice my objection, and to try and convey my thoughts and arguments……

It is the way I understand and perceive intellectual discussion and healthy exchange of thoughts and opinions…..


Michael

Title: Re: Modified KIP scale?
Post by Rob73 on Jun 7th, 2009 at 3:55pm
I found the original KIP scale to be quite good but somewhat confusing in places.  The ammendments are a helpful step I think and surely not intended to disparage the original efforts.

Title: Re: Modified KIP scale?
Post by Batch on Jun 8th, 2009 at 9:10pm
I’ve been watching this thread for a while and have come to the conclusion there are some folks responding with entirely too much time on their hands…  The way I see it, they’re wasting their time and the time of others opining on matters of relative unimportance when there are other far more pressing issues affecting folks with our disorder to contend with at this time.

The Kip Scale, as Bob Kipple developed it, has served the majority of the cluster headache community who frequent CH.com and OUCH websites more than adequately since he first posted it.  I support Michael’s assessment and support of the Kip Scale as written…  It’s simple, direct, and easy to read.  It also leaves room for each cluster headache sufferer to identify his or her own reactions relative to the same pain scale used by others.

The Kip Scale is what it is…  It’s not a diagnostic tool, nor is it an ICHD-II definition...   It’s merely a way of relating the pain you feel in simple terms to others who suffer from the same cluster headache disorder.

Yes, there are questions frequently asked by newcomers to this forum on the nature of the Kip Scale and they deserve good answers.  I’ve not done a query on the database but “What are shadows?” would appear to be the question asked most frequently.  Rather than reinvent or change the existing Kip Pain scale in reaction to these questions, just answer the questions.  Shadows are a term Bob used to describe reactions to the pain of cluster headaches that occur between Kip-1 and Kip-3.

Accordingly, until a compelling requirement can be stated to change or amend the Kip Scale with clearly identified supporting rationale agreed upon by the majority,  posting comments to open the Kip Scale up to change amounts to little more than pole vaulting over mouse turds.  You cold be spending your time and efforts on far more pressing issues relative to our disorder.

For the folks here in the United States, if you want to spend time as an activist posting, faxing, sending email, and making phone calls on an issue/cause celeb that should be a major concern to all of us, take a look at Medicare and the fact that it will not cover the expense of home oxygen therapy for the cluster headache disorder.

Consider the following factoid…  Medicare paid out nearly $1.5 Billion dollars to cover home oxygen services and contents in 2006 for COPD sufferers, but not one penny to cover these same home oxygen services and contents for cluster headache sufferers 65 years of age and older .  The Medicare estimate for home oxygen therapy expense for 2009 is $1.69 Billion and…   the bureaucrats…  not physicians…  already have a plan in motion to ration home oxygen therapy by cutting the total amount payable to a maximum of $724 Million by 2012.

While this will not have an impact on those of you 65 and older paying for your own medical insurance or those fortunate enough to have your employer pay these expenses, for the rest of you who plan on using Medicare and who don’t have a supplemental medical insurance to cover these expenses, unless you plan on assuming room temperature on or prior to your 65th birthday, this is going to jump up and bite you…

Moreover, while you’re reading this, the same idiots in the US Senate that passed the porculus Bill without reading it are busy letting their “healthcare scientists” and lobbyists write a bill for Government run “Universal” Healthcare that’s essentially patterned after Medicare so it too will not cover the expense of home oxygen therapy for cluster headache sufferers 65 and older…

What’s even more concerning is the idiots responsible for this bill freely admit they don’t know how to pay for it…  

Now…  It that doesn’t get yer knickers in a bunch, it should…  If it does, and you can see where all this is heading, don’t let a day go by without sending faxes, email, and phone calls you your two Senators telling them cluster headaches are far more painful and debilitating than the enhanced interrogation techniques (EIT) used on the three terrorists at Club GITMO…  

Also tell them, when they write a bill that denies oxygen therapy to a cluster headache sufferer, they are guilty of fostering legislation that enables state run torture far more painful and debilitating than the EITs.

Having been through SEER training on two separate occasions at Eglin AFB, FL, and Warner Springs, CA prior to deploying to the Tonkin Gulf and the Air War over North Viet Nam, I can say that from personal experience…

Take care,

V/R, Batch

Title: Re: Modified KIP scale?
Post by thebbz on Jun 25th, 2009 at 1:59pm
If it ain't broke don't fix it. Elaboration of symptoms are subjective, it creates more confusion than it eliminates. IMHO
all the best
RIP Kip and Judy
the bb

Title: Re: Modified KIP scale?
Post by B14CK5H33P on Jun 28th, 2009 at 10:40pm

wrote on Jun 25th, 2009 at 1:59pm:
If it ain't broke don't fix it.....

RIP Kip and Judy
the bb


You sir, took the exact words I was going to type right out of my fingers.

Title: Re: Modified KIP scale?
Post by LadyLuv on Jun 30th, 2009 at 12:33pm
We all have our opinion... And maybe I miss read something; But I don't see where Ted changed the original KIP Scale. Nor do I see where KIP (or his memory) was disrespected in any way.

Had any wording in the original KIP Scale been changed, omitted or modified; than I would have a problem. but it wasn't. The original Scale is there; with an added explanation from Ted.

So as I said before, if there's something there that I'm missing, I apologize. But I see no harm in a more define clarification of anything.

I thank God for the Skip Scale... but I would also like to thank Ted for writing his addendum and Chuckie for sharing it.

For those of us who fine Ted's explanation useful, use it, for those of us that don't, don't use it...

I see no intent of discrediting KIP, his memory or the Scale he wrote.

I for one have copied Teds info and passed it on to family, co-workers and friends.

Have a Blessed Day Family, and lets move on..

Peace & Blessings
Ruthie

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