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        New Message Board Archives >> Oct-Dec 2003 >> KIP scale comments.
        
(Message started by: Svenn on Nov 12^th, 2003, 6:13pm)

Title: KIP scale comments.
Post by Svenn on Nov 12^th, 2003, 6:13pm

Pain level 0
No pain, life is beautiful
Pain level 1
Very minor, shadow's come and go. Life is still beautiful
Pain level 2
More persistent 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" 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.

The above is Bob Kipples’s marvelous clusterhead scale. I am concerned that it is being misused. I have seen people post that they have several KIP 10’s in a row. I disagree. KIP 10’s are very rare. To me, a KIP 10 is when I have the 45cal pistol loaded, pointed at my head, the safety off, and my finger on the hair trigger.

I have even some people refer to a KIP 15. There is no KIP 15. If you think you are having a KIP 15, you have to re-evaluate your rating of your pain. There is NOTHING worse than a KIP 10. And NOBODY has six or seven KIP 10’s a day, day after day.

I know your pain is severe. I know it is unbearable. I know you are in agony. I know you don’t know how to stand it anymore. I know you are at your wit’s end. I have been there too.

I know I have been guilty of calling a hit a KIP 8 or 9, and then after I think back on it, I have to ask, “Was it really that bad?”

Nobody needs to put themselves over anyone else. It seems that some people feel they have it worse than anyone else. This is the wrong attitude to have. All of us sufferers have pain. All of us are in agony. It sucks that any of us have this.

I guess what I am really trying to say, that we all need to be careful how we use Bob’s scale. It is a real scale. It sets it down to how it really is. Please do not belittle Bob’s great work.

Thnx a LOT to Clusterchuck who help me put the words together

Svenn

Title: Re: KIP scale comments.
Post by Big_Dan on Nov 12^th, 2003, 6:24pm

I agree...

I've mentioned that I've had quite a few 8's and 9's... but after some reflection it ends up being less than I first thought...

I know for a fact that I've had 6 10's, because I can remember each and every one of them... they're the only 6 times I've contemplated emptying my 12 gauge in my skull....

-Big Dan

Title: Re: KIP scale comments.
Post by thomas on Nov 12^th, 2003, 6:27pm

Very powerful message, we should not lose sight of what you are saying here Svenn. I may have been guilty of this, but will try to be more dilligent in the future. [smiley=thumbsup.gif]

Title: Re: KIP scale comments.
Post by jonny on Nov 12^th, 2003, 6:39pm

A most excellent post, Svenn my brother!!

...............................jonny

Title: Re: KIP scale comments.
Post by Prense on Nov 12^th, 2003, 6:53pm

Outstanding!

Title: Re: KIP scale comments.
Post by Edna on Nov 12^th, 2003, 8:07pm

Help with words.....PHOOEY....anyone that can understand and speak back to this cajun woman don't need no help with his words!!!!!!! :) :) ;) ;)

Great post pal, and I myself may be a bit guilty as well. Though I've had the kip 10 a few times...........I was just considering that the ones I do rate 10 have all been as bad as those times.

Will take your message and really do some thinking with it!!

Svenn rocks!!!

luv ya guy,
EDNA ;;D

Title: Re: KIP scale comments.
Post by FrankF on Nov 12^th, 2003, 8:25pm

I have had clusters 14 years now and have had to re-evaluate where I place them on the Kip Scale. Many I thought were 10's were not. I think now most of mine are in the 6-9 range. If I consider 10 to be the absolute worst, well then I have probably only had 20 of them in 14 years.

I remember at least one definite 10... screaming my head off (and neighbors turned their lights on in the middle of the night) and cops coming to the door with weapons drawn.

Title: Re: KIP scale comments.
Post by kim on Nov 12^th, 2003, 9:39pm

Great reminder Svenn and thanks. :)

Yup. Yer RIGHT!

Title: Re: KIP scale comments.
Post by Cerberus on Nov 12^th, 2003, 9:53pm

Excellent point Svenn,

Of course the Kip scale for me is the beggining of the end of the regular pain scale used typically at hospitals and doc's offices. (probably the same in reality but how else are you going to convey your pain to one who doesn't get it?)

Ramon

Title: Re: KIP scale comments.
Post by pubgirl on Nov 12^th, 2003, 9:55pm

Svenn (hey, you sneaked back as well!)

Good wake-up call

Guilty as charged :-[
Think I've only truly ever had one Kip 10

Wendy

Title: Re: KIP scale comments.
Post by Roxy on Nov 12^th, 2003, 10:29pm

Thanks for the reminder Svenn.... :)

I do think think that the Kip Scale is a good median judge of ch pain. But everyone's pain level is different. What I may think is a Kip 6.......someone else may rate it as a Kip 2. It's all relative. Pain is pain. Everyone has a tolerance level different from everyone else. Some can keep working and not notice a Kip 5.....it might lay someone else out on the floor. Pain is a very difficult feeling to judge.

Looking at the Kip scale....I've never had a 6 or a 9. I've never been able to roll over and go back to sleep, and I've never been in the "Why me" mode. So how do you judge where you are on the scale.

Just a wondering thought,
T

Title: Re: KIP scale comments.
Post by Mark C on Nov 12^th, 2003, 10:40pm

If and when you ever get a Kip-10, you will know.
Trust me.
Mark

Title: Re: KIP scale comments.
Post by drnoe on Nov 12^th, 2003, 10:46pm

Unfortunately I've found that my memory of the clusters themselves is vague. I know when I have em what to rate them but I have almost amnesia when it comes to even the recent ones.
The 10 being more rare than would seem is indicated by the "suicidal" criteria. On the original it is, in fact the only word in red.I hope and trust that truly suicidal thoughts are not common amongst us. Yeah. I musta been there a few times.
It is a very useful scale as a general guide, yes? Not for comparison of individuals if that is even possible or desireable.
Regrets if I've shown disrespect about the KIP scale or anything else in past posts. Didn't mean to.
I appreciate all the work that's been done here to make life better.
For the record.
dan

Title: Re: KIP scale comments.
Post by Patrick_A on Nov 13^th, 2003, 12:19am

I know i had 1 Kip10 my last cycle, maybe 2! I do remember the one though. Imitrex didnt touch it.
10's are rare! But 9's suck also!

Patrick

Title: Re: KIP scale comments.
Post by suzy617 on Nov 13^th, 2003, 3:12am

I know I can tolerate pain fairly well but I have to say that when I get hit in my sleep, they are the worse for me and they almost always end up a KIP 10. I do not run to the ER because I know they will be gone by then but many many times if I had a gun near by....well dont know what I would do. Instead though I have constant images in my head of blowing my brains out.
I have to agree with Tracey though that each persons pain level is different. The whole CH thing just sucks.

Suzy

Title: Re: KIP scale comments.
Post by samurai on Nov 13^th, 2003, 4:31am

Uh-oh. I think I need to see a neuro before my next episode, if this one stays done.(3 days PF!) I couldn't afford O2 or even Imitrex, because I didn't have insurance when my last cycle started. I am fortunate that I can shut most of my headaches down with about 2000mg of Acetaminophen, but it still takes about 30min, and I almost always go from shadow straight to k7-9! I can't remember the last time I had a K2-6. The result is not good. Bad HAs, too much Acetaminophen, and I get no sleep. I worry that I am subjecting myself to more pain than necessary, by using such an ineffective remedy, but I have little choice. It worries me that almost all my headaches fall into that high range, and I can vividly remember many k10s as described. When the Acet. doesn't work I have had four hour headaches that cycle from k7-10 back and forth. These really scare me, because I start to lose perspective. I have had the suicidal thoughts, but never acted on them, however I have done some stupid stuff because I was stupid with pain. In my most recent cycle I had a killer HA that the Acet. didn't touch, but I didn't know what else to do, so I kept taking more and more. After four and a half hours I finally got free, but I had taken about 20,000mg of Acetaminophen. That really scared me. That's liver failure territory! I know I'm not suicidal, on the contrary, I am an optimist, but the pain can be too much for rational thoughts to penetrate.
Sorry if I am rambling, I wish I didn't know what a k10 felt like.
Jason

Title: Re: KIP scale comments.
Post by BarbaraD on Nov 13^th, 2003, 6:47am

I agree with Tracey - pain in relative to the individual. Some of us tolerate pain in different ways.

My pain level has increased since the onset of CH. For those of us who are chronic, it's possible to have 10s more than once a day - been there done that and yes - was suicidal.

Over the years, I've built up a tolerance and what was once considered a 10 has now become an 7-9.

I don't think anyone is trying to say their pain is worse than anyone else's, it's just we have to have a place to say "I hurt so bad I cannot stand it!" We all hurt and just are trying to describe it. Kip just gave us a way to express it.... He is a wise man and should be taken serious.

That's my 2 cents worth..... Hugs BD

Title: Re: KIP scale comments.
Post by Opus on Nov 13^th, 2003, 8:14am

Svenn,
You are very correct. I have had only 1 kip10, it did last for 3 hours, fortunately I can't remember much, I was outside screaming in the night and my mother who lives next door had to rescue me. Then I took some codeine and made it a 10+, I was completely out of control and the ambulance was called. When they strapped that o2 mask on I was down to a kip 7 in a short time. I hope I never experience one again.

Opus/Paul

Title: Re: KIP scale comments.
Post by Mark C on Nov 13^th, 2003, 10:54am

Something that comes to mind reading this thread is the pain of a typical CH, much less the un-holy 10, is so great I can't really remember it, it's just too bad. I do know I have had several real 10's through the last 3 decades....my last one last October.

But through the years what I remember is where I was or what I was doing when the real deal hits.....like being at work, or the time I was driving a semi through Oklahoma and I had to park on the side of the road for several hours before I could function again. This is before there were any "modern meds" like Trex...all the Doctors thought it was a sinus infections back then. Just hurting and waiting and praying and cussing ...geez...I don't miss that......oh wait....I still do that....sometimes. Life is better because my arsenal has improved greatly in the last 10 years or so.
Better living through chemistry!
(Right RJ!)
http://tinyurl.com/uvc3

It's not easy living with the "most painful condition to man! (http://www.clusterheadaches.org/library/general/management_of_ch.htm)

PF Today!
Mark

Title: Re: KIP scale comments.
Post by Woobie on Nov 13^th, 2003, 1:41pm

on 11/13/03 at 04:31:06, samurai wrote:

I am fortunate that I can shut most of my headaches down with about 2000mg of Acetaminophen, but it still takes about 30min, and I almost always go from shadow straight to k7-9! Jason

???????????? Never heard of anyone aborting a CH with Tylenol. Especially a KIP 7-9.

Svenn - good post dude!!

Title: Re: KIP scale comments.
Post by Margi on Nov 13^th, 2003, 1:59pm

I thought the same thing, Tina - but he does also say that it's taking 30 minutes to "work". It could be that the attack is just ending on it's own.

Before abortives and oxygen, Mike would do this too. 2000mg of acetominiphen is, what....4 or 8 of them (depending on whether they are 500mg or 250mg pills). Yep, he would take 4 (chewing them so they would "work" faster! ) and said it would take the edge off. I know Elaine's done the same thing - take some kind of OTC med, just to take the edge off. When life gives ya lemons, make lemonade, right? Any port in a storm. OK, that's all the cliches I can think of but if it's helping Samurai get through his attacks, great. Hard on the tummy though - AND long term use can cause kidney/liver damage.

Title: Re: KIP scale comments.
Post by Unsolved on Nov 13^th, 2003, 2:35pm

I agree...good post. But, according to the KIP scale, Most all mine are 8's, 9's, and 10's. If it wasn't for my kid, I would've already blown my head off !

Reminds me of sitting in the hospital bed at Chelsea Hospital (MHNI) about a month and a half ago. The scale they use is 0-5, with 5 being the worse pain you've ever felt. When the nurses would come in and ask us to rate our pain, the guy next to me ALWAYS said 5 (even though he was fiddling w/ his laptop, talking on the phone, and maybe even eating.) When he saw me have my first cluster attack while I was there, I think it gave him a new outlook on pain (just from seeing me in pain)

Unsolved

Title: Re: KIP scale comments.
Post by thomas on Nov 13^th, 2003, 2:39pm

I had an 8 while at my appointment with my neuro last year - the nurse just about freaked!!!!!! She couldn't believe I was in that much pain. After it was over I said "That's why I'm here" duh!!!

Title: Re: KIP scale comments.
Post by amen on Nov 13^th, 2003, 6:09pm

Well I have just been introduced to the kip scale about a week ago. I still think I can honestly say the first HA I had this cycle was a 10 I considered the ER but since its 45 mins away and my kids aren't old enough to stay alone, and the nearest relative is 30 min away, I knew that by the time I got to the hospital it would be about gone. I still considered it a 10 in my book though, because I have had 4 kids naturally and would have rather been doing that for 4 hours than suffer that 1 hour of pain at that level it was hitting me. I have never been suicidal, but that's because I could NEVER put my kids through that. Maybe that wouldn't be considered a 10 to most people. But to me it is. I agree, it all depends on your pain tolerance.

Title: Re: KIP scale comments.
Post by Donna on Nov 13^th, 2003, 7:58pm

My ch's started in the early 60's. No one knew what a cluster headache was. I was diagnosed as having Hortons Cephalgia--the red, tearing eye, nostril congestion on that one side and the headache on the same side. The only thing available was Sansert, which I researched and refused.

Then came the Tylenol 3. I took it at the slightest twinge of a headache...no help. I took it before I went to bed and woke up each night with a roaring Kip 9.....I took it and slept sitting up and still woke up with a roaring Kip 9. I took Tylenol 3 with Goodies Headache Powder..no help.

As a matter of fact, most of my headaches shot from 0 to 9 within minutes. I never had a shadow in my life.

During the 28 years of ch, I can only remember 4 Kip 10s, and I did end up in the ER. I had no conception of time...no thought that it would be over before they saw me....just somebody please do something! Put me to sleep or whatever because I cannot stand this pain.

I was a single mom with three little ones and was blessed with a good lady friend with kids that could watch over mine while she drove me to the hospital.

Talking about pain bein relative...
I may have a higher pain tolerance than you, but if you truly cannot stand the pain that I described as above, it is a 10 for you.

I agree with Svenn.......there's nothing higher than a 10. If you call yours a 10+, you are having a real 10...you just didn't know one before.

Title: Re: KIP scale comments.
Post by BobG on Nov 14^th, 2003, 1:58am

The way I read Mr. Kipple's Scale is nobody has had a 10+ and lived to tell about.

RIP

Title: Re: KIP scale comments.
Post by amen on Nov 14^th, 2003, 8:06am

Quote:

I did end up in the ER. I had no conception of time...no thought that it would be over before they saw me...

I have thought about that and now my opinion is this. If it's the worst pain you have ever felt before in your life, then it's a kip 10, because you don't know any worse pain. However, your worse pain can be way more severe than my worse pain. I compared it to being worse than delivering birth naturally. For me it was worse than that. However most people who I know have had delivered kids think I am nuts. I don't think I have a higher tolerance of pain, I think I just got lucky with how much pain I had. You never mentioned the pain of delivering, so what I deduct from that is that the pain was so bad, it didn't even compare. I am sorry you have to suffer like that. I honestly feel I have had 1 kip 10, based on the worse pain I personally have ever felt. The worse pain you have ever felt may been 10 X's what I have experienced. I don't try to one up anyone here. When I read these threads, I actually count my blessings and thank the Lord! I look at the positives of my situation and feel for those of you who are worse off :'( I think-at least I'm not chronice(sorry for those of you who are), at least I only get 2-3 a day, at least I have found a med that is working (for now), at least I got to experience 5 pain free years before this last cycle. Those are the kind of things I think about to get me through this cycle. I pray for those of you who are worse off or more severe than I am. I try to use the kip scale as accurate as possible.

Title: Re: KIP scale comments.
Post by sandie99 on Nov 14^th, 2003, 8:55am

Good point! :)

I've never had KIP10, luckily, but the ch pain I've had has been enough.

I think what has been worse than one painful attack itself is that I got used to having pain daily. THAT made me depressed and yes, suicital for a while last year. Nothing worked and the attacks kept coming... that's when I thought if it's worth it. But now I see things differently.

People do tolerate pain differently. In my case, I can take hell of a lot before I say auch. So, my KIP5 can easily be KIP10 to someone else.

Anyways, pain-free days to everybody!

wishes,
Sandie99
(who has finally got new pain and preventing medication and keeps her thumbs up that this time it will work...)

Title: Re: KIP scale comments.
Post by catlind on Nov 14^th, 2003, 9:50am

I don't know how many Kip 10's there's been over the last 3 years, haven't wanted to keep track really. I remember only 2 or 3 instances that were truly and totally unbearable, where my husband has physically restrained me from leaving the house because he knew that if I found a moving vehicle I would willing put my head under it to stop the pain.

When I was at the docs the other day trying to get my trex sorted out, the nurse asked about pain scale, 0 being no pain, 10 being someone cutting your arm off with a chain saw while you watched. I laughed at him and said that's not a 10, a full blown CH is a 10.

Of course he scoffed at me, and I explained to him that when in "kip 10" (our pain scale) I would gladly let someone cut my arm with a chain saw if I thought it would distract me from the pain in my head.

For me those are rare. Thank God or I wouldn't be alive now. I have no desire to die, but I have been at the point of "I will do ANYTHING to stop this pain". Since I've had trex though, I have come to realize that anything over a 6 is rather rare. I take the advice of those more experienced than I and I medicate at the first twinge. This recent cycle has been a blessing comparatively. Every time prior by the time it's ending, I am in a state of mind that says "I CAN'T live like this anymore". I have been able to manage this cycle quite nicely.

Alternative treatments can also help in that area ;)

One day, none of us will ever know what a Kip 10 is. We will have won the war with CH and not just the battle.

Cat