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        New Message Board Archives >> 2004 Posts >> Worst Pain Known? How do you Measure Pain
        
(Message started by: athos on Aug 26^th, 2004, 6:29am)

Title: Worst Pain Known? How do you Measure Pain
Post by athos on Aug 26^th, 2004, 6:29am

I have been sitting here trying to qualify the statement that Cluster Headaches are the Worst Pain Known to man?

How do you qualify that? How can you acurately measure pain?

I understand CH as much as anyone, but how do you qualify that with others? Going a little further, how do I measure my kip 10 with what another expresses as a kip10. My neuro thinks that I have a very low pain tolerance. My view is, that I have a very high pain tolerance, I just have a lot of high level pain. Unless you have and experience my pain, how can you accurately measure it?

Pain is all relative to the individual and their experiences with pain am I right?

I can't really measure my pain with the same stick as someone with Cental Pain or Trigeminal Neuralgia, can I?

There have been those that have watched me during an attack of a Kip 10 and I have really freaked them out, but they can only relate on what they understand. They are not qualified to judge what my pain is, as I am not qualified to judge what their worst pain is.

So I guess my question is how do you really measure pain and explain it to others?

Title: Re: Worst Pain Known? How do you Measure Pain
Post by Ronny on Aug 26^th, 2004, 8:19am

Hi,

I think pain is different for everyone, what hurts for someone might be a laugh for another. I think there is no real measurement.
It says in ouch canda: "Cluster Headache is said to be the worst imaginable pain known - more severe than limb amputation without anaesthetic or natural childbirth."

I for myself have never amputated any limb to measure the difference. (i'm not going to ;))

But then you wonder, how can they know this?

Ronny.

Title: Re: Worst Pain Known? How do you Measure Pain
Post by thomas on Aug 26^th, 2004, 8:31am

I don't mearsure or quantify pain, all I can say is to me, there is no other pain than ch, EVERYTHING else TO ME is minor discomfort. (Broken bones included)

Title: Re: Worst Pain Known? How do you Measure Pain
Post by Jeepgun on Aug 26^th, 2004, 8:34am

I've been through a number of physically traumatic experiences in life, including breaking numerous bones, (some of them several times!) breaking my neck, five years of boxing in the Army, (20 wins, 4 defeats, 2 draws, 6 wins by way of knock-out :) ), car wrecks, on and on... Cluster headaches are, without a doubt, the absolute worse things I have ever experienced in my entire life. I'd rather get in the ring and spar six rounds with Muhammad Ali in his prime, than to deal with this shit. On a scale of 1-10, with 10 being the worst pain you have ever felt in your life, how would you rate the pain of a cluster headache? 10+

Title: Re: Worst Pain Known? How do you Measure Pain
Post by farmboy on Aug 26^th, 2004, 8:55am

I have had 2 back surgerys and i will that that pain anytime over the pain of these cluster headaches.

Title: Re: Worst Pain Known? How do you Measure Pain
Post by purpleydog on Aug 26^th, 2004, 9:04am

How do I describe the pain of a kip10? Let me count the ways...
Hmmm. There is no fucking way to describe it. Does that mean I'm not feeling it? Hell no. Does that mean the doc doesn't believe you? Depends on whatever excuse for a doctor one happens to be using...which is fairly common.

Lucky me, I have a good doc.

PD

Title: Re: Worst Pain Known? How do you Measure Pain
Post by Lizzie2 on Aug 26^th, 2004, 9:19am

Ken,

Under JCAHO law (you remember me talking about that the other day?), health care professionals cannot rate your pain for you or tell you how intense or not intense the pain you are feeling is. If they do this, this is grounds for taking action at some level! They cannot send you away from the ER because they decide that your pain relief is adequate. If they send you away from the ER and YOU feel your pain relief is not adequate, then you need to speak up and say you have not had adequate relief. If they still refuse to help you further, then REPORT them.

Personally, I do not rate any one type of my pain against another. When I have my clusters, they are rated on their own scale (the Kip scale, of course!), and when I'm referring to the pain of my constant headache, I usually relate it to the pain scale that we envision as the "normal" pain scale. Do I have level 10's there, yup I do. They aren't the same as Kip10's I'll tell ya that much. But to me, they go beyond much more than a slight annoyance or bother. Just ask those of you who I've spoken to in the middle of some of those intense pain moments that were'nt due to CH.

I did have the pleasure of putting a saw through my finger when I was 13. It was an accident and it went to the bone. Honestly, it didn't hurt at the time! I was in too much shock over it. It started to hurt later when they were messing with it, but the fact of that type of injury is that it ends. It is severe, but it ends. It doesn't come back 4 + times a day with equal intensity.

Also, I've watched my brother have 3 surgeries to his legs. The first was to completely reconrstruct a torn ACL, MCL, and miniscus. The second was to repair the ACL in the other knee. The third surgery, they cut open his shins and shaved off some bone and sewed him back up and sent him on his way. He says the knee surgeries were by far the most painful. But I saw my brother, who will never show pain...in real pain. That was rough.

When I treat patients in pain, sometimes they have pain in more than one place. I always do a different "pain assessment" of each place they feel pain. For example, what do you rate it? What is the quality of it? and then on. If I have a patient with a migraine headache and a post-op abdominal incision pain...these pains are not the same, but she would like both to be resolved as quickly as possible!

All in all, I really think you can't compare. Before I had CH, I had thought I'd experienced my worst level of pain. Had I not ever had CH, I'd still think I have. Having CH, I now know that the CH is more intense than any other pain I had. Working in hospitals and ERs has shown me that everyone deals with pain on a different level, and everyone needs to be given the benefit of the doubt about their pain, no matter how significant or insignificant it seems to the health care worker in charge. Some people scream their heads off over papercuts and sore throats. Some people are very quiet and handle major things like GSW's without yelling.

The ambulance rule of thumb tends to be if they are yelling and screaming, they are going to be ok. If they're quiet, that's when we worry. And that is usually due to trauma victims.

So pain has so many facets, it really is impossible to compare one to another. Clusters probably are the absolute most intense pain any of us has ever experienced. I do hope that we dont' have to experience any greater pain than that ever.

Just my thoughts!
Carrie/Lizzie2 :)

Title: Re: Worst Pain Known? How do you Measure Pain
Post by E-Double on Aug 26^th, 2004, 9:20am

I don't think there is a true way that "we" could qualify the pain. It's unfortunate. So many of us are different (patterns, triggers, duration, even the way we respond to meds). This probably makes it difficult for researchers as well.

If a large enough sample was gathered while in cycle and hooked up to various types of monitoring devices (with long wires so we could move about ;;D)

Then it might be possible to measure the "stress" we endure in comparison to the "kip levels" we describe.

I wonder if this is a possible.
Could this be a study that one of the clinics or big name Neurologists in the field conduct?

How else could it be qualified? Especially to a world that needs a visible reference and the fact is that most don't get to see us during a hit.
Doing such an experiment could not only qualify but make our pain quantifiable.

I guess that is why we get... It's only a headache or how bad can it really be? even from "experts"

Good question and I hope you are doing well!

Eric

Title: Re: Worst Pain Known? How do you Measure Pain
Post by lionsound on Aug 26^th, 2004, 9:22am

Yes, worst than childbirth. And at least after labor you get an amazing gift.

Yes, worst than car accidents. Unless, you car accident trips CHs(yes it did, yes it was a nightmare)

Since I started logging my HA's (I get "painful" migraines too) my first cluster entry said :

Went to ER at 3:30pm.
Headache Left side(10+++).The worst. I just couldn't handle it...... writhing in pain waiting on the stretcher in the hall. The Doc said it was a cluster headache.

Title: Re: Worst Pain Known? How do you Measure Pain
Post by JDH on Aug 26^th, 2004, 9:24am

What's bad about CH pain is that when you think it can't possibly hurt any worse it goes up a notch.
Like Thomas said, there's nothing else like it. IMO all other pain is just annoying compared to CH's.

Jim

Title: Re: Worst Pain Known? How do you Measure Pain
Post by Charlie M on Aug 26^th, 2004, 11:19am

NO one known another pain. The only people that can understand me are on this board. Someone can watch as I sweat or check my blood presure and see it as 190 or above over 120, and can amagin what its like. I also have nerve pain in my leg that keeps me from walking at time, thats a peice of cake next to CH. It is truly suicide pain at times as we bang or heads and wish for ANY relief.

Title: Re: Worst Pain Known? How do you Measure Pain
Post by john_d on Aug 26^th, 2004, 12:26pm

on 08/26/04 at 09:24:03, JDH wrote:

What's bad about CH pain is that when you think it can't possibly hurt any worse it goes up a notch.

exactly, damn ch

Title: Re: Worst Pain Known? How do you Measure Pain
Post by Karla on Aug 26^th, 2004, 12:35pm

Well I do remember a time when my right fellopian tube twisted 3x. I was in a lot of pain but it wasn't as bad as a cluster so I kept laying on a heating pad trying to ignore the pain and taking ibuprofin. After 3 days of this I finally went into my drs office in tears and collapsed. He carried me into the er and ordered morphine right away and admitted me and ran tests. He asked why I didn't come in sooner? I said because the pain isn't as bad as my ch's. He said most women are dying after 1 day of this. They did emergency surgery within hours to remove the tube and overy. My dr became my best advocate I have ever had for ch and getting me what ever I needed whenever I needed it.

Title: Re: Worst Pain Known? How do you Measure Pain
Post by Mac on Aug 26^th, 2004, 12:59pm

A while ago somebody on this board said(roughly) "it doesn't matter what you do to me, nothing is worse than a cluster. I had an abscessed(sp?) molar one time. Extreme pain, took 4 or 5 days for the penicillin to work and I would have rated it a 5 on the kip scale. I could dull the pain with tylenol and I managed to fall asleep at night. Clusters rule the world of pain.

Title: Re: Worst Pain Known? How do you Measure Pain
Post by crazy_mj on Aug 26^th, 2004, 4:06pm

12 hours of labor with two hours of pushing resulting in an emergency c-section....hmmm.....nope, clusters still win hands down!!! You only go through childbirth, at the most a handfull of times. A cluster is pretty much all day everyday for the rest of your life.
If I found out that I would have to go through childbirth on a regular basis for the rest of my life, I would put a gun to my head and pull the trigger.

Title: Re: Worst Pain Known? How do you Measure Pain
Post by Superpain on Aug 26^th, 2004, 4:39pm

I'd rather have a root canal with no anesthetic...

Title: Re: Worst Pain Known? How do you Measure Pain
Post by k9n8 on Aug 26^th, 2004, 5:45pm

I was one of many who agreed recently that it doesnt matter what you do, untorturable, that kind of thing. My 2 cents is a kidney stone. At first sign, it took about a week for it to really get going. I kinda figured what it was because I was taking WAY too much coral calcium, trying to self medicate, so it was a big one (I saved it, gross, I know, but it is BIG, haha). Even though the location of pain wasn't cool, it is an ongoing joke with my wife and me because my friend told me that was his worst pain of his life. It hurt but come on, I watched a documentary through the worst of it......

k9n8

Title: Re: Worst Pain Known? How do you Measure Pain
Post by Sean_C on Aug 26^th, 2004, 6:20pm

I agree with the familiy, ones pain bears all on that persons tolerances. Some people can withstand alot, some none.

My personal experience with pain other than CH has been hell but I have yet to experience a pain that I could classify as similar to a CH on any scale. CH has its own class by itself. I have yet to come into a pain class where I can't control it at all like CH. I mean on my kip 10 CH I have no control what so ever until it stops, I'm totally fucked, and I know it. With other than CH pain like bones sticking out of your flesh or your guts trailing 6 feet behind you, or getting your head pulverized by pipes, or your ribs splintering your lungs, none could compare to my kip 10 at all. All those things I could still control the pain, whether it be not moving or positioning myself differently till I could get help. I remember it was more of an issue of fear of bleeding to death other than pain. Fear is not physical pain, pain is clusterheadache.

Sean..................

Title: Re: Worst Pain Known? How do you Measure Pain
Post by Jonny on Aug 26^th, 2004, 8:07pm

Anyone ever hear a clusterhead say they know of a greater pain than CH?

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

Title: Re: Worst Pain Known? How do you Measure Pain
Post by Kevin_M on Aug 26^th, 2004, 8:26pm

Clusters have taken me past what I thought I could mentally bear, but to have to do that several times a day and at night makes it pain that would test anyone's sanity too. Many comparable pains don't happen six times a day, which makes experiencing clusters an unescapable lifestyle of coping with going beyond, and keep getting up.

Kevin M

Title: Re: Worst Pain Known? How do you Measure Pain
Post by Jonny on Aug 26^th, 2004, 8:38pm

on 08/26/04 at 20:26:28, Kevin_M wrote:

Many comparable pains don't happen six times a day, which makes experiencing clusters an unescapable lifestyle of coping with going beyond, and keep getting up.

Got Sciatica dude?

I hit the floor twice a week and keep getting up, keep doing my job......After this long aint nothing going to keep my ass down for long (Unless its a 6' blonde ;;D)

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

Title: Re: Worst Pain Known? How do you Measure Pain
Post by fubar on Aug 26^th, 2004, 8:45pm

I have developed a saying over the years, and I hope it makes sense to a lot of you here because it has deep meaning for me personally.

Everyone has their own '10'.

What I mean is this... No matter what you have been through in your life, something in it is going to qualify as the best or the worst in some category. If you're talking about pain, everyone has been hurt at least once in their life. If they are lucky, maybe it hasn't been that bad, but it's still their '10'. When they try to imagine the 'worst' pain that can be felt, they only have a yardstick as long as the '10' they know. However, this does not diminish the value or importance or severety of their '10', and that's what's important to remember. I think we, as clusterheads, tend to trivialize others so-called pain because we know a '10' that usually is orders of magnitude higher. This is wrong. Everybody has their own '10', and no matter where that bar is set, it's still their '10' and we should respect what that means.

The Fu has spoken.

Title: Re: Worst Pain Known? How do you Measure Pain
Post by Lizzie2 on Aug 26^th, 2004, 8:49pm

on 08/26/04 at 20:45:50, fubar wrote:

I have developed a saying over the years, and I hope it makes sense to a lot of you here because it has deep meaning for me personally.

Everyone has their own '10'.

What I mean is this... No matter what you have been through in your life, something in it is going to qhalify as the best or the worst in some category. If you're talking about pain, everyone has been hurt at least once in their life. If they are lucky, maybe it hasn't been that bad, but it's still their '10'. When they try to imagine the 'worst' pain that can be felt, they only have a yardstick as long as the '10' they know. However, this does not diminish the value or importance or severety of their '10', and that's what's important to remember. I think we, as clusterheads, tend to trivialize others so-called pain because we know a '10' that usually is orders of magnitude higher. This is wrong. Everybody has their own '10', and no matter where that bar is set, it's still their '10' and we should respect what that means.

The Fu has spoken.

You just made me smile. That's been my thoughts for as long as I can remember. Thanks for that, Fu

Carrie :)

Title: Re: Worst Pain Known? How do you Measure Pain
Post by Carl_D on Aug 26^th, 2004, 8:56pm

Would rather get kicked in the nuts several times a day than deal with CH. I've often said if I had a gun I would probably blow my brains out during a 10; not to kill myself - but to make it STOP!

Carl

Title: Re: Worst Pain Known? How do you Measure Pain
Post by E-Double on Aug 26^th, 2004, 9:00pm

on 08/26/04 at 20:45:50, fubar wrote:

It is a very good point.
In fact I honestly do not trivialize others pain but i do find that my fiance sometimes feel like she is not "allowed " to have any because she has researched and read that nothing can compare to my "CH pain". I always tell her that she's being silly. but she is trying to be supportive in a weird way. gotta love her.

Title: Re: Worst Pain Known? How do you Measure Pain
Post by vig on Aug 26^th, 2004, 9:16pm

Lately when people ask me what it's like, this is how I respond.

It's like getting tased in the eye...
Every 5 seconds...
for an hour...
and that repeats every 2 hours...
every day...

That usually shuts them up.

Title: Re: Worst Pain Known? How do you Measure Pain
Post by Cerberus on Aug 26^th, 2004, 9:48pm

Ok had to jump in here...

Havent read the entire thread so pardon if someone has said this.
YES... pain is relative to ones ability to withstand it, however, the pain associated with most things albeit not directly will be the result of a fatal or potentially fatal injury.
Example...severed limbs and broken bones, the pain from this is excrutiating...alas, as a result of the injury, your body will experience shock and the pain itself will eventually be ignored by the brain while trying to survive, or the pain is only temporary and very isolated.
Even pregnacy and natural childbirth technically have a higher mortality rate than CH...at least it can result in death AND women tell me all the time that they "forgot" how painfull it was...when was the last time you "forgot" how painfull CH is? Burning alive is "less painfull" because the nerve endings get cauterized and eventually don't work at all.
CH...is non-fatal, the body doesn't go into shock as a result of any injury and the pain therefore is "pure". The pain of CH generally doesn't lessen and you DON'T in any shape or form "get used to it". Not to mention that you can experience it over and over again to the same tune Quantifying it as the most painful experience possible.

At least that would be my best reasoning
Ramon

Title: Re: Worst Pain Known? How do you Measure Pain
Post by Grandma_Sweet_Boy on Aug 26^th, 2004, 9:50pm

I've gotta say that between Ramon and Jonny - they've said it all!

Amen!

Title: Re: Worst Pain Known? How do you Measure Pain
Post by don on Aug 26^th, 2004, 10:14pm

Few months back my appendix exploded. They put me on Diluadid injections and a morphine pump.

I found the pain to be a bit annoying without the pain meds.

I was back at work the following Monday after exploding body parts and emergency surgery. If I woke up that Monday with a CH I might have taken the day off.

Title: Re: Worst Pain Known? How do you Measure Pain
Post by BobG on Aug 27^th, 2004, 1:18pm

The pain of a cluster attack is a "unique" pain. A one-of-a-kind pain. There is no other "type" of pain like it.
Pain of child birth, cuts, broken bones, abscessed teeth, gun shot wounds or Sciatica are "different" than the pain of clusters. They all hurt like hell but the pain is just not the same. I don't know if it is the worst pain known to man but I do know it is the worst I've ever felt.
On the Kip scale, a Kip 10 is different from person to person. My Kip 10 is no worse nor milder than your Kip 10. If yesterday you experienced the worst cluster pain you ever had that is your Kip 10. If tomorrow you experience a more severe pain that becomes your Kip 10 and yesterday's 10 moves back to your Kip 9 or 9+.

Title: Re: Worst Pain Known? How do you Measure Pain
Post by ZAIRA on Aug 27^th, 2004, 4:42pm

on 08/26/04 at 06:29:08, athos wrote:

I have been sitting here trying to qualify the statement that Cluster Headaches are the Worst Pain Known to man?

They say so, Ken... I think that, at least I survive with CH, bad, but I survive... I think of all people who would like to survive as me (and they have "worse" pain as me... for example I am thinking about children cancer affected)

Quote:

My neuro thinks that I have a very low pain tolerance.

You have a very hight pain tolerance, my friend. Don't mind your neuro (neuro?)... Everyone here can understand... :'(

Quote:

So I guess my question is how do you really measure pain and explain it to others?

I don't measure the pain, because it is not a play: it hurts, that's enough.
I don't explain it to others, because I can't find the right words! What could I say? I feel as having a screw in my brain? They could say: me too I have a screw in my brain... "normal" people (supporters apart) can never understand!! >:(

Hugs..... Zaira :-*

Title: Re: Worst Pain Known? How do you Measure Pain
Post by Sean_C on Aug 27^th, 2004, 9:38pm

on 08/26/04 at 20:07:42, Jonny wrote:

Anyone ever hear a clusterhead say they know of a greater pain than CH?

I was thinking on the same aspect today at work dude and although they were'nt clusterheads I said to myself the fire survivors of the Station fire in R.I. more than likely no more pain and suffering than we could ever imagine. Those people must suffer more every day.

PFDAN to all

Sean.........................

Title: Re: Worst Pain Known? How do you Measure Pain
Post by Prense on Aug 28^th, 2004, 10:22am

It is impossible to make someone else understand the pain of a clusterhead. I have tried in the past, but it has proven futile. Sure, I have had my painful experiences (non-CH) just like everyone else. When I tell someone that there is nothing more painful than a CH attack, I know they are immediately thinking, "yeah, I doubt that."

Folks imagine unbearable pain as severing a limb, skull fracture, broken ribs...basically, something they have never experienced themselves. They just think that is what unbearable pain must be like. How could a headache possibly compare to that?