Rant - morphed to Shadows and KIP Scale

[Purple]

Here are similarities I found in the 2 above proposed descriptions that I find describe well the ride, adding a few of my own details. I think we need a simple generalisation of the state. I think the first 3 lack such a generalisation.

1-

2-

3-

4- Shutting off outside world, agitation - could be childbirth (the 2 sound maybe similar)

5- Unable to stop holding head - rocks back and forth

6- Beginning of hell - starting serious pain "why me" (should be here)

7- Unreal, highest level... Body sweating, moaning and screaming, total headbanger. This is hell

8- Reality starts to fade - ultrasonic beyond perception

9- Believe you will die - suicidal (well... just a fact that we do reach that point, Moxie  )

10- Complete loss of senses - Exceed capacity to comprehend Fall in coma-like state that can last hours and does not provide any rest; pain still very high when coming out of it Near death sensation I would say near death experience, I think that's what it is

[MoxieGirl]

Hi Purple,

Excellent input!

I really like the descriptions that get away from things like 'really hurts', 'very painful'. These are quite vague and can mean different things to different people. Although yes, I do have some in my descriptions of my pain scale, but that scale was written for me. Now that we are opening things to a wider audience, it needs rethinking.

I do also concede that suicide is a good indicator.

I think descriptions along the lines of:

Remembering the headaches and migraines are there just to put the intensity of the clusters into perspective, doesn't imply all clusterheads have headaches or migraines.

But the shadow line can be no pain, mild pain like a headache and all the way up to, and including the start of a cluster. But also, shadows are unique to clusters, so are tied to that pain line. I don't get shadows with headaches and migraines.

Are we starting to get more all-inclusive now?

MG

[Purple]

Great !

Trying to find general descriptions, adding this (please gang, add your 2 cents or modify this draft and/or redress my poor English )

1- Pain may come and go; First stabbings of an ice-pick like shots of pain

2- Pain becomes steady and (can be) rising fast; Breathing rythm increases; Great difficulties to concentrate, to go on working/driving/sleeping; Reaching for abort solution

3- Stabbing from the knife reaches deep inside the head; Need to isolate; Nasal occlusion starts/sinus pressure; If sleeping, impossible not to get up; Reaching for abort solution (kind of late); Sucked into a world of pain

4- Shutting off from outside world; Agitation; Hands to head; Moaning starts; Nose starts running, eye closes and tears run down

5- Unable to stop holding head; Rocks back and forth

6- Beginning of hell, starting serious pain; The "why me" syndrome sets in; Gets up and walks back and forth; Headbanging may start

7- Unreal, highest level of pain conceivable; Body sweating; Moaning and screaming; Total headbanger. This is hell

8- Reality starts to fade; Ultrasonic pain is beyond perception; Screaming becomes vain and turns into soft moans like ones of a dying person

9- Suicidal or thoughts that you are actually going to die; Reality has faded, this is another world; Impossible to communicate with outside world, even moans are left to soundless screams

10- Complete loss of senses; Exceeds capacity to comprehend; Fall in coma-like state (can last hours and does not provide any rest); Near death experience

adding: I notice K5 lacks description... I see K5 as where either the abort solution starts working and I take the exit, either it's highway to hell foot to the floor (might run out of gas though).

So maybe could be added at K5 ... idk... the edge?

[MoxieGirl]

I REALLY like those descriptions. They don't fit my clusters perfectly, but they aren't going to, nor is that the goal. But, I can relate to something at every point, and if I said I had a level 4 cluster, we would all be right there knowing exactly what that felt like.

I really like how 'highest level of pain conceivable' is at level 7. You reach that point and think, 'it can't possibly get any worse'. But it does, and it does and it does...

I've read it twice now, and can't find fault or something I'd want to adjust.

OK, maybe some of the description in 2 I'd move to 3, but it is also true in 2 sometimes. I think there can be a thin grey line between some of these. I know that even when I'm recording numbers from my own pain scale I might call one cluster a 5, and the same sort of thing a 6 the next day. Maybe it lasted longer, or came on sharper, but the pain might have been more or less exactly the same.

Do you ever reach a point where you are afraid to get up and walk around or even move? Afraid of disturbing it while it is at its worst? I hear people saying they go running, or take a hot shower, or a cold shower, or do some other activity to abort or reduce the pain. But for me, there are times when I'm terrified of moving. The pain has so captured 100% of my world, that the desire to get up seems impossible.

If my best friend comes in and says 'go get yourself a cold drink', I can do that. But not without someone prompting me. It is almost a battle of wills.  I wonder if something along those lines is fitting on the scale, if it is just more than me.

A few people have told me that giving birth unaided is a 3 or 4 on the pain scale. I have had kidney stones, and I'd rank them about a 5, although at the time (long before clusters) they were the worst pain imaginable. Would it be worth trying to include some comparisons?  A 4 is like a broken bone (although I've never had a broken bone). Or an 8 is like having your leg cut off without anaesthetic. I don't know, maybe not.

MG

[Purple]

OK, maybe some of the description in 2 I'd move to 3, but it is also true in 2 sometimes. I think there can be a thin grey line between some of these. I know that even when I'm recording numbers from my own pain scale I might call one cluster a 5, and the same sort of thing a 6 the next day. Maybe it lasted longer, or came on sharper, but the pain might have been more or less exactly the same.

So true !

Do you ever reach a point where you are afraid to get up and walk around or even move?

Yes ! and yeah, I couldn't imagine running... at these stages, I do tend to stop moving, just spasms.

Would it be worth trying to include some comparisons?

I think so... If I showed this to some people, they could (maybe finally) picture what I meant all along.

Where do you think would be on this scale the "severing of an arm with an unsharped small knife" be?

[MoxieGirl]

I think so... If I showed this to some people, they could (maybe finally) picture what I meant all along.

Where do you think would be on this scale the "severing of an arm with an unsharped small knife" be?

Yes, well, this is where it can be a challenge, but not impossible.

If several people have given birth, and have clusters, and agree that giving birth is a 3 or 4, then that becomes a valid comparison.  Yes?

We'll probably be hard pressed to find a clusterhead whose cut their arm off with a small knife. But broken bones and dislocated joints will find a place on the scale. And things like kidney stones (I'd rank as a 5), migraines, headaches. What about having a bone re-broken because it started to heal wrong?

A root canal, that must be a 5 or 6, or maybe just a 4.

Back pain. Back pain would be an excellent comparison. I've put my back out, and the pain is phenomenal. Excruciating just isn't the word for it. It must be about a 7.

One description I've often used successfully. Have you ever gotten a muscle cramp in your calf muscle? You know how it hits so suddenly it takes your breath away? The pain is ultra intense, you can barely breathe, you can't walk, all of your focus is on that pain and finding a way to stop it. Now, take the most painful muscle cramp you have ever had, and increase the pain 10 fold and have it last for 3 hours. Then relocate that pain to your eyeball, and you are beginning to understand what a cluster is like.

However, I think there is an element to clusters that make them different from other forms of pain.

With most injuries, the pain travels up the body, through the nervous system to the brain. There is a time delay, and distance.

I've said before, and not afraid to admit, I'm a masochist. Yes, in the very real S&M way. There is a form of pain I adore, I seek it out and cannot live without it. But it is SO, SO very different. I have had times where a sadist was inflicting all kinds of extreme .... um .... 'play' onto my body (for lack of a better word). But because it was on my body, I am able to completely separate myself from that pain. I can literally leave it at the source, at the impact point, and not let the sensation travel to my mind. I can turn it off.

You can't with clusters. I've earnestly tried all of my techniques. The pain is instant. It is raw from the source. All other forms of pain is like touching a bread pan straight out of the oven with  your hand, a cluster headache is jumping right into the hottest part of the oven.

So we always have to remember that comparisons will only go so far. But I think they are important, and will help convey the message.

I also think they will help supporters. So many supporters watch their partner go through a cluster, and feel so very helpless. I think part of that is because they don't, they can't, understand what the person they love is experiencing. If we can quantify that, put it into terms they can relate to, that should help break down a barrier. With understanding comes better openness and communication, then more compassion and support.

I think having an easy to understand, easy to remember and use, and non-clusterhead friendly pain scale is vital.

MG

[didgens]

thank you for this .. my son doesnt know how to describe the pain levels to me .. hopefully this will help.

[didgens]

I have never experienced a CH but other types of severe pain so mabye  between 4 - 5,, say a 4+  are gall bladder attacks  (required a  morphine drip in ER), and or labor pains dialated to 4.  from what you describe here. 

[MoxieGirl]

Hi didgens,

Thanks for your input. It is a difficult thing to grasp, or explain, the sort of the pain these beasts produce.

You think you should black out, and I wouldn't be surprised if some people do.

I also wonder if, as clusterheads, we build up a pretty high pain tolerance. Which would mean our perception of the pain would grow and change over the years.

I know that I can take amazing levels of pain now, and barely flinch. Things that would have had me in tears before clusters came into my life.  We adapt to survive, and we (clusterheads) adapt to pain.

Have you read my Thor's Hammer post? It may help.

http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1375472809

Hugs, MG

[Potter]

Punched the bone right thru the end of the stump.  It hurt. But not like ch.

[MoxieGirl]

Potter, you have a way of leaving people speechless, but OMG!

I think that puts our little pain scale discussion into agonising clarity.

MG

[spiny]

The most important thing is to get rid of 'headache'. Otherwise, it does not matter, except to us. It cannot be conceived of if you haven't been there.

The root canal doesn't hurt, the abscess does. Labor for one is a breeze without meds and almost death to another. Depends on the labor.

How do you explain a railroad spike at 1000 deg. temp being pushed thru your brain? Or every nerve lighting up like it was plugged into about 50volts Dc? Ain't going to happen. Yes, it matters to us but I doubt it matters very much to others.

And suicide has never entered my mind thru it all. I have loved ones that I will not abandon because of this affliction. Again, just my opinion I know.

The best thing that happened around my house was my husband seeing a grown man pushing across the carpet on his face in pain so severe that he could not handle it. Thank God for those videos. That will show a man that a woman is not being a wimp when she is in agony like that, sitting in a scalding hot bath rocking and moaning to herself. He has seen my health go to sheeet from 6-7 month cycles.

Just my opinion, I know. But it is what I have learned. My friend with TN understands, but no one else. He has faced the octopus of TN and that is enough to get the picture.

Just get rid of the word 'headache'!!!!!!

[Bejeeber]

Just get rid of the word 'headache'!!!!!!

AMEN Spiny!!

[Cassidy]

Get rid of the word headache and get rid of the pain. I'd rather spend time on solving the pain and forget the number or discription.           Leslie

                                           

[weatherman]

Moxie, Purple

I totally applaud you for the efforts in trying to improve the Kip Scale.

All we want is the ability to effectively communicate the degree of suffering encountered with CH.  How each of us hurt must include individual experience, which naturally varies depending on our progression of the disease and tolerance for pain.  Room for discrepancies can certainly be built it.

The most important aspect is to make definite comparisms to other types of pain, like injury, child-birth, burns, other common headaches, etc.  Although these vary tremendously also, at least PEOPLE NOT AFFECTED BY CH will be able to understand.  Perhaps then, true sympathy may be obtained, expecially from the medical community.  Then, attention may be turned to effective treatment.

Most of the medical consideration is directed to the "top 3-4" killers; heart disease, cancer, respiratory and stroke, etc.  Only the death rates (and of course profits gained by treatment) are considered.  NO FACTOR OF PAIN IS ACCOUNTED FOR!

If even 10% of doctors, Big Pharm Mgmt and polititions could experience a K8-9 CH, we'd probably have better treatment now.

Good job guys, lets make this "new and improved" Pain Scale a product we can all use and hopefully get benefits from.

weatherman

[MoxieGirl]

I often say that if I had a super power, it would be the ability to touch someone and let them experience a 5 minute cluster attack.

None of us have that ability, and maybe that's a good thing. So instead, we need to use words to describe what we are feeling, or videos, or screaming or any other tool we can possibly come up with to convey the message. Any and all are good.

One of the devices people, and doctors, understand is a 1-10 pain scale. So if we can define a 1-10 pain scale that is roughly right for most sufferers, and describes the levels of pain in ways most people can relate to or imagine, then we are adding another very power tool to our toolbox of descriptions.

It will also help us share with each other, so we know how badly someone is hurting within the community.

Is it going to be perfect? No, labels are never perfect. But if it gives a good general idea, points people in the right direction and invites communication, then that is a good thing.

Not the answer to everything, but a step in the right direction.

And I agree with you Spiny, the word 'headache' does us more harm than anything else. And that is a topic that should be addressed, and will also help us in getting this message across. But right now, with this thread, we are focused on the pain scale.

MG

[Purple]

Glad you like it weatherman. 

I won't comment more, trying to keep my message short and clear, I agree with MoxiGirl and Weatherman's comments

At this point, what I feel is important is:

Does this improved scale picture well what we clusterheads feel?... what modifications...?

The only way to know is if clusterheads answer that question.

I would like to see it presented at our sister board also for further comments, approval or modifications.

It would be very cool  8-) if many Clusterbusters could first tell if it can prove useful for them or not... what they would change...

is there a survey option on this board? That could be easier for those who never or seldom post

I particularly like MoxiGirls's graphic, with the migraine and regular headache scale alongside. It would really help non-sufferers to easily picture...

[ThatHurtsMyHead]

.

[weatherman]

Potter...

GREAT that you shared that photo.  It demonstrates exactly why we are trying to improve the KIP Pain Scale.  CH agony cannot be seen, except of course by witnessing someone go through an attack.  Personally, I can't watch it .... just freaks me out.

But the visual of an injury IMMEDIATELY promotes a response.  OK, I thought .....  "HOLLY CRAP ... that must have hurt!" 

We need to get this type of connection (at least with doctors) through our scale of pain.  The general public would understand, while the medical community will surely need a little more convincing.

Can we querry one of the admins for approval to submit a survey to the members, once a final version of the Pain Scale is drawn-up?

I totally agree w/ Purp that it should go to the "big audience" for suggestions, ideas and approval.  No doubt, there will some very interesting comments.

MG .... That linear scale comparing the popular headache types .... with "shadows" added is OUTSTANDING!  You've got this one very close to perfection in my eyes.

weatherman

[MoxieGirl]

Really loving this thread.

I've got a very busy week this week, but I want to (in the next few days) combine all the various 1-10 scale descriptions listed so far, and produce a 90% draft of an all-encompassing scale.

We can then tweak that a little more, and I have an idea or two to further enhance the graphic scale that may help too.

Then, I propose we present it here (yes, there is a survey option, but we may have more flexibility with something like Survey Monkey). And then once we've gotten more comment, present it on our sister board. Not sure why, but I think it is going to be a harder sell there, so want to make sure we have answers for any push back we might get.

What do you think about a survey listing a bunch of common ailments, injuries and life events, such as giving birth, breaking a bone, having a bone re-broken, dislocating a knee, kidney stones, headache, migraine, etc. And invite people who've had one or more of those to place them on a 1-10 scale of pain, where 10 is their worse cluster ever.

What other things could we add to this list?

MG

[ThatHurtsMyHead]

.

[MoxieGirl]

That's an interesting point Jeff, although you may not realise you made it.

The Richter Scale for earthquakes is a very interesting scale in that an level 5 earthquake isn't just one notch up from a level 4, it is 10 times larger (more energy) than a level 4 earthquake and so on up to level 10. So, a 1.0 on the Richter scale is equal to 480 grams of TNT, whereas a 10 on the Richter scale is equal to 15 gigatons of TNT.

I like the terminology used with the Richter scale, and maybe we should adopt something similar.

1 - Insignificant

2 - Low

3 - Minor

4 - Moderate

5 - Intermediate

6 - Noteworthy

7 - High

8 - Far-reaching

9 - Outstanding

10 - Extraordinary

MG

[weatherman]

My favorite is the Fujita Scale for tornados.  I think the apparent injury due to the pain (nerve cells firing), could be similar to structual damage incurred by winds.

Light Damage

Moderate Damage

Significant Damage

Severe Damage

Devasting Damage

Incredible Damage

Just kidding, but had to toss the weather-related scales in there too.   

An idea did strike me though seeing MG's post with the Richter Scale.  Since it is logrithmic and not linear (two is ten times greater that a one, three is 100 times greater that a one and four is 1000 times greater that a 1) ..... maybe we need some sort of multiplying factor as the numbers increase?

Just a though, Ok ... too much coffee tonight. 

I like the idea of comparing CH pain to more common pains most people are familiar with.  Again, just a thought............

weatherman

[shocked]

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

Try  - “tapping hands together in synchrony”

http://www.nytimes.com/2013/07/07/opinion/sunday/the-morality-of-meditation.html

“alter neural functioning in brain areas associated with empathic understanding of others’ distress”

“dissolve the artificial social distinctions — ethnicity, religion, ideology and the like — that divide us and feel more compassion for each other when distressed.”

“not just benefiting yourself, you’re also benefiting your neighbors, community members and as-yet-unknown strangers by increasing the odds that you’ll feel their pain when the time comes, and act to lessen it as well.”

shocked

[shocked]

Wong-Baker “Faces” scale -

Why pain is a numbers game

By Sophie Harrison. The Financial Times Magazine.

http://www.ft.com/cms/s/2/dcbdc9d4-14f5-11e3-a2df-00144feabdc0.html#axzz2eTSjmRfD

“There is also no way to rank pains objectively, no master list of officially painful conditions – though having an awareness of problems that are generally perceived to be agonising, such as renal colic, dental abscesses and cluster headache, is helpful.”

shocked