Rant - morphed to Shadows and KIP Scale

[MoxieGirl]

I shall apologise for this post at the onset. But I'm sure it rings true with other people too.

My best friend claims she understands what I'm going through. Her mother had trigeminal neuralga after all, she knows what bad pain is like.

However, I get chastised if I dare mention how bad my clusters are in relation to other people's pain, especially hers!

I had stopped doing it. Months ago after such a conversation I came to understand that to each person, their worst pain ever is the worst pain in the world. After all, there are no universal pain measuring devices (which I wish did exist).

And I DO really understand that principle, always have.

But when we were watching a show tonight where a baby was being born, and she says 'you've never experienced pain like child birth'... How could I NOT respond!?   .... 'but, actually I have.'

Yes, OK, child birth has its own unique attributes different from clusters, and no, I have never experienced that. But she can't seem to conceive that childbirth ranks somewhere between a 3 and 5 on the KIP scale (from what people have told me).

I so hate the 'my pain is worse than your pain' argument. It is so pointless. No pain is worse than a cluster (just kidding). But, clusters ARE bad, and just because someone can conceive of something worse than what they've experienced doesn't mean their worst pain cant be a drop in the bucket to someone elses.

Rant over. Gonna try and put it behind me and sleep.

On the good news front, I've not had a bad cluster in nearly 2-1/2 weeks!  A couple very short stabbing pains, but we won't count those.  It's nice to go several days in a row without a visit from the devil himself.

Hugs to all, and to all a good hug.

MG

[b.g.]

HIYA MG!!!!

Yup. I quit getting myself into those "arguments" as well.  There's better things in life to worry about.

BUT ..... I bet I can eat more french fries than you!!   

[Bejeeber]

On the good news front, I've not had a bad cluster in nearly 2-1/2 weeks! 

That part ROCKS!!   8-)

Lordy that must be a nice breather for you MG.  [smiley=thumbup.gif]

I'm familiar with those sorta conversations where you're just trying to mind your own biz and someone close to ya decides to engage you with an entirely false statement about your CH. Those conversations suck. 

[CHfather]

MoxieGirl wrote on Yesterday at 5:43pm:

On the good news front, I've not had a bad cluster in nearly 2-1/2 weeks!

That part ROCKS!! Cool

Yes, it does.  Great to read this.

[spiny]

Congrats on the great run of PF time! 8-)

And yep, just ask a kid who skinned his knee what the worst pain in the world is and they will tell you 'my skinned knee'.

Everything is relevant to personal experience. My son thought migraines were the worst till he picked up the ice picks last year. A six minute ice pick sure changed his perception of pain.

Hugs!

[weatherman]

MG-

Also sending applause  [smiley=vrolijk_26.gif] on the pain-free run.  That has really got to feel great!  I am so very jealous.

Pain is like happiness, there is no measure of how great it is, or how to compare it to others observations.  I guess that's why it can be faked so easily.  The ability to comprehend suffering is a combination of our individual encounters and our tollerance for knowing our limits of "high and low" values.  Life always seems to dish out something that stretches those limits every once in awhile.

I've seen people cry like a child over a scrape and another barely whince after having a hand completely smashed.  Some of the poorest and most disadvantaged people in the world are the happiest.  Others with all the wealth, status and prosperity possible are miserable.  No way to really see "what's going on inside".

Its a debate that no one can win and just leads to frustration.  It sux when someone compares your CH to something they have experienced, but you haven't (like child birth).  That's why pain in all forms generates powerful emotions and the all desiring wishes to end it.

Pain intensity is hard to imagine, but duration is understood by all.  Tell them it's like having a baby 5 times a day for a month .... they might get that.

You have great rants, keep 'em coming!   

weatherman

[ann]

Hi there

I think this is anything but a rant...it's a very valid point of conversation. When I first looked up cluster headaches they were listed as suicide headaches. Well, how many women have this feeling about labour. I have done labour with an 8lb baby firmly stuck and needing huge amounts of force to get her out, followed by a csection in which the anaesthetic wore off part way through....but guess what....they were nothing compared to months of CH. So, I DO think that CH folks should be recognized for the high levels of pain, recurrences and fears of recurrences as well as the fact that most of us carry on with our lives and try to protect our families from seeing us when the pain is worst. Whether it is said out loud, or just to yourself, the person who can deal with  CH and still be a reasonable person, is truly the champ. Let others complain because for them, their pain is the worst....of course these are also the same people who have to tell you all about their kid, their vacation, their worries...bottom line, CH trumps the worst labour a few times over!!

[diamondmaker]

I think Dr. McGeeney(or another promenent specailist) compared it to having a limb amputated without anesthesia... Ask them when was the last time they did that? We understand our pain, and on a scale of 1-10 (standard practice for determining pain level in an emergency room)... our range is more 1-100 with the "usual" 10 regestering around K4 for us... and you don't even get a K6 till you are up into the 50/100 range. It is simply inconcievable for those who have never tasted it. Like explaining an orange to someone who has never tasted one.

[MoxieGirl]

Thanks for your comments guys.

I often say it is like describing the colour red to someone born blind.

Thanks for your pain comparison Ann, I shall remember that.

I once read, either on this forum or our sister site, that someone had dislocated his knee playing football, and didn't realise it for 3 days because that level of pain didn't even register in relation to the pain of cluster attacks. It was about a 0.5 on his 1-10 scale.

There is a book, and one day I'll find it and read it, where a bug specialist guy went around getting himself stuck and bitten by every bug on the planet he could find, and then described the pain he felt. It was sort of a way of classifying how painful different stings were.

I think that's about the best we can do with cluster headaches. As mentioned, each and every persons 1-10 scale of pain is unique to them. But if we can find a common item between two people, and say...  'Ah, OK, so a broken arm ranks 10 on your ten scale. Well, for me a broken arm is a 2, and a bad cluster is a 10". That at least then gives them something to compare it with.

Although I've not given birth myself, I am told giving birth is about a 3 on the cluster scale of 10. I once had kidney stones, and they are about a 4 or 5 compared to clusters.

I've mentioned before that I'm a masochist, and I've worn out sadists who were inflicting pain (in a good way) on me. They have literally had to stop and recover, at which point I was just getting into the experience. That kind of pain, the level of pain that makes most other masochists I know wince, is about a 2.

I actually have 3 pain scales. My headaches have their own 1-10 scale. The my migraines have a 1-10 scale, and the 1 of a migraine is about the 7 or 8 point on the headache scale. Then I have the cluster scale, where the 1 is about a 7 on the migraine scale.

But the cluster 10 scale is much longer than the other scales, the pain range is much greater. Also, my very worst clusters hit a 14 or 15 on the cluster scale.

Sorry, my best friend also tells me I over think, over analyse things. hehe

MG

[Purple]

The Kip scale as described on the CH.com site is not a good reference for me. And For others to understand it, it would need comparisons like giving birth equals to Kip 4 or 5... so that (other) people can figure out what we mean.

Besides, the Kip scale doesn't fit my attacks, especially at level 4-5-6...

"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"

For me, at Kip 3, I need to be alone, and there is no way I would go back to sleep with a Kip 5, even 4.

The "why me" syndrom starts to set in at level 6, and at level 8, its hell, I'd rather die, which leaves two levels for "totally out of this world pain". At level 9, I'm starting to plan my suicide, think of my children, figure they will manage... all of life seems totally futile... And at level 10, I see death, it comes in the form of a white light and a flat land that looks soothing and peaceful... see it in the distance, but closing in... then it's coma time, I wake up hours after.

What do you think?

http://www.clusterheadaches.com/scale.html

[Purple]

There was a few attempts at modifying the Kip scale here, and I think we should get back to this and propose a new one which would stick better to our reality, and that would also help advocate to others

http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1327395365/15

[Cassidy]

I just don't think it's important. It hurts bad and I need to get it under control. And the sooner the better. It could be a kip 2 or 20. I just don't care much anymore. A cluster is a cluster. They all are horrible.

                                         Leslie

[ann]

I agree that the "standard" pain scales don't work as related to CH. Pain is such a personal experience and how you deal with it one day might not work the next time. Also fear of the pain is a big part.

My husband tells me that when I first went into shock and was hospitalized for dehydration + pain due to 4 month rt side headache, I told him the pain was 100/10. I never said that during the labour, the csection and I never said that during all the 100mile bike rides we did when we toured together. I never used that scale even when I took a full face kick during the swim at Ironman Canada in 2009 ~ I didn't know it that day, but the kick was hard enough that it ruptured the eardrum. I knew the nose was injured as the blood gushed during the rest of the swim but fortunately had stopped by the time I got out of the swim and transitioned to the bike or they would have stopped my race. The Ironman triathlon is 2+ mile lake swim with 2500 other athletes, followed immediately by a 112 mile bike and then a 26.2 mile run. Where I've done it the ambient temps are 30+ celcius. And never, during the training for 4 of these races, did I ever use a pain scale like I have with CH.

So for people who think I'm a whimp, I can assure them that I don't posses that character trait. The pain for CH sufferers really IS so bad that the 1-10 scale does not work in the traditional way.

Hang in there...

[ThatHurtsMyHead]

.

[Bejeeber]

Also fear of the pain is a big part.

Indeed it can be, and it can be considered PTSD.

If you haven't run across discussion of it yet Ann, vitamin M fortunately tends to be very powerfully effective for long term relief from PTSD. 

[MoxieGirl]

Kip scale..

I think I might start a new thread on the KIP scale today.

I wonder if 'suicide' or wanting to commit suicide is the best description for a level of pain. It almost justifies that desire - is that what we really want to promote?

Yes, I know that is often how people feel at that level of pain. But I can honestly say, I don't think about suicide - for me it is a case of wanting to cut my head off to separate myself from the pain.

If my foot was in that much pain, I would have a desire to cut my foot off. OK, yes, cutting my head off would be a final act, for sure. But its not that I want to 'die', I just want the pain to stop.

And I wonder if other people think the same way??

MG

[Purple]

And I wonder if other people think the same way??

MoxieGirl, no.

For me, at kip 9, life really becomes a futile thing, not important, and start to think about my children who will go on living without me. I lose grip, I start to let go...

and at Kip 10, the grip is lost and I resignate myself to the fact that I will die, I'm cut off from my life, I'm elswhere, and I actually experiment something that could be called near death experience where I see a bright white light. Don't have the strenght to get up and do anything to end it though, so I fall into somewhat of a coma.

Not that the suicide part is that important, some people might not picture it this way. But for me, the revision of that scale is also for other people to have an idea of how strong the pain is, so I think, yes, suicide should be mentioned in there ... well maybe it's because I'm rather depressive to start with and maybe you're not and that's why I get to that and you don't? 

You had re-done the Kip scale 18 months ago, the link to it is higher on this thread here.

I had the intention of working on this and starting a thread myself, but Cassidy's post stopped me. I thought she might have a point that, after all, it's not very important

[MoxieGirl]

Hey Purple,

You know, your so very right, in may respects.

I have spent quite a bit of time thinking about the KIP scale today. I even graphed it, or at least my interpretation of it. I then graphed the scale I use, and they are quite different. I was going to write a long post about them, comparing them, getting input from others etc.

I think my biggest dislike of the KIP scale - and that is a strong word, but bear with me - is that Shadows are included on the scale. For me, shadows are pain free and don't feature on my scale at all. But while researching the KIP scale on our sister board, I read a nice post by Batch explaining shadows, and I have a better understanding of why they are on the KIP scale, and I dislike it a lot less now.

I still tend to think the KIP scale is too shallow at the 1-4 end, and rises too steeply into full pain at the 7-10 end. My scale is closer to a 45 degree slant than an inverted bell curve.

But all that is really neither here or there. It is a reference point about something that you really can't put a reference point to - an individuals pain level. Like you say, it is an indicator to other people to how bad the pain is. A commonly understood 1-10 scale of pain.

At about this point, my dislike has turned to appreciation.

And really, you couldn't have said it better, at the end of the day does it really matter?

I've said it before, and I shall say it again. I am an expert at over thinking things and often strive for a much higher accuracy in things than is ever required.

MG

[Purple]

I've said it before, and I shall say it again. I am an expert at over thinking things and often strive for a much higher accuracy in things than is ever required. 

haha same here

shadows... while thinking of this on my side (just a little), I also wondered about shadows. I was going to say shadows are what is left of a precedent high Kip, and not a uhhh a new germ of pain. The other day, I had a Kip 5 that lasted 8 hours after my kip almost 9, but I was explaining to someone that I felt that for sure this wouldn't grow into a bigger attack. It was a stable pain. Not the same as when I wake up at night and rush for my abort solution because it's growing, like a horse au gallop, gee how do you say this... ok cool, same  like a galloping horse. So the horse can be at Kip 1, but reaching 2 in seconds and.... geee is it ever long waiting for that water to boil for my coffee.    :'( Frightening... runs fast and heads in the wall... Kip 3... Kip 4 Ahhhhhhrghhhh!  On the other hand, a shadow can easily be at Kip 3 and is not as frightening as this crazy horse.

What is Batch's description of shadows?

[MoxieGirl]

Here is a copy/paste from Batch's description of a shadow:

There are a lot of definitions of a cluster headache shadow...  Near as I can tell the original term came from Bob Kipple, father of the Kip Scale of cluster headache pain.

If you read the Kip scale tab at the left side of this page, you'll see that shadows are a minor cluster headache that intensifies from Kip-1 up to Kip-3.

The simple answer is a shadow is still a cluster headache even if there's relatively little or no pain at all.  As such, a shadow is not normal and should be treated with an abortive at the soonest...  Some shadows fade after a few minutes while others can hang around for hours.  A third category of shadows start benign then ramp up into a screaming a head-banger.

Prior to starting the anti-inflammatory regimen with 10,000 IU/day vitamin D3 that keeps me and hundreds of other CH'ers free of cluster headaches, I opted for oxygen therapy at flow rates that support hyperventilation to dispatch/abort shadows as fast as possible.

Hope this helps.

Take care,

V/R, Batch

Here is the full thread:

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1374772231/1#1

My clusters come on, and then leave, in a number of ways.

Sometimes I get what feels like a normal headache, it may last 1-3 hours and turn into a cluster. Once the cluster is gone, all pain is gone.

Sometimes the cluster comes on in a WHAM style, hitting me in the eye out of the blue.

Sometimes a cluster ends, and leaves me with a headache for 1-3 hours.

So, is it these headaches that come before, or linger afterwards, what people describe as shadows?

For someone who gets a normal headache at least 5 days out of 7, I can't tell the difference between a shadow (using that description) and a normal headache until after the cluster raises its ugly head.

To me, a shadow is a foreboding, a presence in my mind, of the demon. But perhaps this is PTSD, and not part of the cluster at all. This feeling can last for days, but produces no pain.

So perhaps I need to rewrite my definitions of what a shadow is.

MG

[Purple]

Cool, I feel this is getting somewhere, I can relate to almost all you write. Everything except the "normal headache 5 days out of 7" part.

I think if clusterheads share common symptoms, there are still as many as we are, and other particularities also. Moxie, you suffer migraines and other headaches too, so I can understand shadows becoming a mix up of all this and actually maybe triggering clusters in your case... I mean I can understand it becomes difficult to tell apart two different headaches, for I guess anyways a cluster attack always await only an invitation to dance from some other devil to master the floor.

Obviously, this scale and definitions never were established very precisely, and not with a very wide assessment of sufferers.

Maybe it's not very important, as Cassidy says, but still I'm interested in seeing this progressing, as I am also a little obsessed by detailling things.

hmmmm, I don't think I agree with Batch that every shadow should be treated/busted.

I agree with him though that there would be different types of shadows.

Perhaps we should start by defining shadows, since the Kip scale consists of shadows for the first scales, and that's what seems weird.

I think there are basically 2 types of shadows: those that are a pain that remains after an attack, and those that are more or less a building up of an eventual attack, like are the first sign of a cycle building up for most episodic. Some of these shadows, especially at begining or end of a cycle for episodic, we know will not develop into an attack. They are just there. At one point though, they do become a threat. As for the first type, they are generally manageable and can be throughout the day, but can get out of hand and climb up the scale fast.

En résumé, je think that I'm saying...

that a shadow is not a cluster attack, even if the pain reaches upscale.

Yea, I would say that an attack and a shadow is not the same, and that a shadow can turn into an attack, but some shadows can be up on that pain scale but manageable or stable, so still not an attack. So an attack could start at say Kip 3, since before it was a shadow level Kip 3, but not an attack. Suddenly, management of the shadows fails and the shadow swithes to attack. I'd love to have anyone's opinion on that statement of mine

Off cycle, I carry a pretty much constant shadow of Kip uhhh I would say 0,3  ;D no serious that's true. When the cycle is coming, the first week, it climbs to 0,9. When it reaches 1, it's an attack, it's growing and dangerous. Buuuut, I have shadows that I know won't grow of pain level Kip 3 easy. It's a stable pain. Won't grow. I've had these all day at work back then.

So... that's me...

you think we can get somewhere close to a common definition of shadows and get to some scale reform? ;D

what's everyone's take on this???

[weatherman]

I also don't believe in the K10 pain level.  That's the absolute upper limit of agony that leads to death or at least unconciousness.  There are only very few people who could handle that and survive .... although they'd surely be clusterheads.  I hope to never see that level.

Yes, the KIP Scale is WAY to vague to be useful.  Should only a few levels of misery ..... small, medium and large.  I've found that in tracking my CH it's difficult to distinguish between levels and the Beast always skips a few or starts at K4.  It is fun to try and over-analyze.  I've come up with this one ....

BradleyÂ’s Intensity Tracking of Cluster Headaches

This is my version of ClusterBusterÂ’s famous KIP scale for pain.

Refined, added to and personalized.  It's the BITCH scale.

Pain Level    K=0     NO PAIN   ;D

                           Simply put, Life is Beautiful

Pain Level    K=1     SOMETHING IS HAPPENING 

                           First realization that Head Ache is forming

                           Slight Pressure in Head and Sinuses, very low grade pain.

Pain Level    K=2     STANDARD HEADACHE IS HERE 

                           The Shadows become steady, pressure increases.

                           It’s Time to start O2 and get to a safe place

                           Avoid work, driving and people

Pain Level    K=3     CONSTANT STRONG SHADOWS  :-/

                           Becomes an intense regular headache, hot flashes

                           Very Strong Sinus Pressure and Head Pain

Pain Level    K=4     THE BEAST WANTS IN  :-[

                           Cluster Headache begins with knife in the eye

                           Tearing and restlessness occurs

                           All abortives attempted

                           Agitation ramps up with pacing and shutting off outside world

Pain Level    K=5     THE KNIFE STARTS TO TWIST  :'(

                           Strong stabbing Eye Pain with swelling and Congestion

                           Completely Unable to stop holding head and sobing

                           

Pain Level    K=6     THE BLADE IS SALTED AND ELECTRIFIED  :-X

                           May be Woken from sound sleep

                           Diminished senses (sight and hearing) and panic begins

                           Relief is mandatory.  This is the beginning of HELL

Pain Level    K=7     SHEAR AGONY FOR AN HOUR [smiley=cry.gif]

                           All relief options fail.  Pain becomes unreal and reaches

                           highest levels of bare-ability

                           If you can ride it out (and it doesn't get worse) you'll collapse

                           with complete exhaustion and fall asleep

Pain Level    K=8     VERY SEVERE CH.  INTENSITY BECOMES UNREAL   :exclamation

                           Rocking, cursing and yelling.  Some weak convulsions occur

                           Reality starts to fade.  Cannot stand or sit.  Consciousness

                           fades in and out. 

Pain Level    K=9     "WHE ME" Syndrome sets in

                           Pray to God for relief, you actually believe that you will die

                           Hopelessness, depression and fear becomes prevalent

                           Pain becomes very clean and almost spiritual, over-taking

                           your entire existence.

Pain Level    K=10    ER TRIP or CALL 911 if you are able 

                            Cannot move or speak.  Complete loss of senses,

                            Feelings of Suicide.  Near-death sensations.

On the concept of SHADOWS .....

I think there is a progression of events .......environment, body chemistry, physical effects, then symptoms that lead to a good CH.   Sometimes the stars just don't line up right and the initial stages develop, but don't lead to a full-blown attack.

I'll get the congestion, tears, red-eye and dull pain, but sometimes never a CH.

It's the knife in the skull that defines CH for me.  All other symptoms are just a regular headache or "shadows"

weatherman

[MoxieGirl]

Hi again,

I've re-titled this thread as the subject has changed a lot. Might draw in more discussion.

OK, so here is my pain scales. I have a 1-10 scale each for headaches, migraines and clusters, and the pain levels tend to over lap some (usually around the 7 point).

This isn't to say that a headache progresses to a migraine, or a migraine progresses to a cluster. Sometimes a headache will progress to a migraine, and sometimes I'll have a headache as a precursor to a cluster. But in essence these are 3 different types of pain. In the same way as period pain is not the same thing as contractions when giving birth.

I try to define my pain levels more by what it does than how it feels. So my 1-10 on the cluster scale looks like this:

It is also worth pointing out, as weatherman says, it can sometimes be difficult pinpointing if it was a 1 or a 2. So I tend to group mine a bit, 1 and 2 are quite similar, 3 and 4 are quite similar, but a 1/2 is definitely not a 3/4.

1 - Short and intense, similar to an ice pick headache but longer and more in the eyes with side affects that can take 20-60 minutes to recover from. Side affects being, feeling lost, out of sorts, crying, shaking, off balance, tired, etc. The body temperature may also go up and down very quickly.

2 - More intense and longer than a 1, perhaps several minutes. Takes my breath away, or makes me stop what I'm doing to catch my breath, eyes may water.

3 - Longer lasting than a 2, 15-30 minutes, often makes me cry (this was written before busting, as I rarely cry now). Grabs my attention and makes me stop what I'm doing and find a quiet place, or at least away from others. Can wake me from a deep dream at night (or become part of the dream), takes an hour or so to fully recover from side affects as listed in level 1.

4 - Potentially equal to child birth (although I don't have person experience), Can last 5 minutes to 40 minutes or longer, I will be very shaken, cry, body temperature all over the place, eyes water, nose runs, hands clasp to area of pain, can't stay still.

5 - Pain is VERY intense, takes most of my focus, difficult to get myself a drink or do anything but rock back and forth, hands clasped to head.

6 - Starting to approach serious pain now, curled up in ball, "why me" feeling, when will this end?

7 - Quite similar to 6, but typically lasting longer.

8 - Pain goes ultrasonic - there is a sense that I could perceive or almost hear the pain before, but when it reaches level 8, the pain (or the demon) becomes invisible, goes beyond my ability to perceive it, but is 1000 times more intense. Imagine hearing a very high peached squeal that hurts and gets higher and higher in pitch. Eventually you can no longer hear it as the pitch goes outside our range, but the pain is still there and getting worse. That is an 8.

9 - Suicidal. Can't breath, can't think, torrents and waves of pain, nothing exists in the world except the pain. All consuming.

10 - The pain has exceeded my ability to comprehend it. Feels like the top of my skill is being pried off with a crowbar, eyes being pulled out and burned, a hot poker in the eye would be a relief at this point in comparison to the pain.

I know I moaned about the KIP scale referencing suicide, and then I go and have it in my scale. Oops. My bad.

Notice I don't mention shadows or headaches at all. As I've said, I've never associated shadows with pain, but perhaps I need to start calling the headaches I have before a cluster a shadow. Hard to tell as I have so many headaches, I never know if it is just a headache, or a cluster is waiting in the wings.

My cluster usually (apart from the occasion with a preamble of a headache) come on WHAM! For me a 40 minute cluster is a long one, so my 1-3 on the scale refers to quite short clusters, lasting a minute to 10 minutes usually.

For those of you with proper clusters, you probably can't imagine a cluster lasting 5 minutes.

MG

[MoxieGirl]

Purple,

I love some of your descriptions, and agree with your perception of shadows.

MG

[Purple]

Cool  :D, thanks MoxieGirl, and

Thanks for that graphic,  [smiley=tekst-toppie.gif]

There are many common points in Moxie's and weatherman's description, except the "why me" which I would also put at K6.

So I put forth that a shadow is not a cluster attack. We 3 seem to agree on that. Therefore there could be added a line for the shadows in your graphic. Or 2 lines for 2 types of shadows. I would range these from headache 10 (migraine 3) to cluster Kip 3, or 4. Reaches my perception of a Kip 0,3...

I think this work can prove very useful to many to help identify their pain level and better define the cluster (and other HA) patterns.