The worst pain known to medical science... really?

[MoxieGirl]

I have an issue with that statement, and it has been bugging me for awhile.

Many cluster heads, myself included, tout that statement about to gain sympathy from a public that does not understand us. It's as if that statement is meant to encapsulate the seriousness of our condition. We often lack other words to describe (or perhaps describe in one sentence) the Hell that is Cluster Headaches.

And I get that. Like I said, I've used it myself.

I saw a post recently that said.. "... Some doctors and scientists have described the pain resulting from cluster headaches as the most intense pain a human can endure - worse than burns, broken bones or child birth."

WHAT!! I appreciate their well meaning intensions, but, WHAT!

First off, scientists? Really, do we have scientists involved in the study of cluster headaches? But that's actually a trivial point. The real thing there for me are the statements 'most intense pain a human can endure' and 'worse than burns, broken bones and child birth'.

OK, clusters are painful, very painful. The only other medical condition I know off the top of my head that comes close is Trigeminal Neuralgia, which I would say is about a 9.5 on the pain scale if clusters are a 10. They are a Hell in and onto themselves. But there are other things out there that cause phenomenal pain. I know of a kid who has a very rare chronic pain condition in his stomach that easily rivals clusters. I wish I could remember what it is called, but there are probably only 10 people in the world that have it.

I also wonder about things like the Australian Box Jellyfish sting, or the fire ant. Get stung by enough of these jellyfish and you're dead! That sounds pretty intense. The fire ant is said to be like being shot by a gun!

And yet, everyone compares clusters to child birth. I know they are trying to relate it back to a pain that everyone can understand, or at least 1/2 the population can. But I know people who had a really easy birthing experience, and others really bad.

I've never had a broken bone, so can't say how clusters compare.

The thing is, the pain of a cluster headache (in my very humble opinion) is just one part of the whole picture of the condition.

What about the frequency, the sleepless nights, the sheer terror of not knowing when the next one will come, or perhaps worse, knowing that going to sleep will bring one on. Remember the film Nightmare on Elm Street? Remember how the kids were terrified of going to sleep? That's what it's like for a cluster head who gets attacks at night.

The list goes on, and my rant could go on, but I'll stop here.

I feel that we, as a cluster suffering community need to find an effective way to communicate the absolute Hell that having clusters is to people who are unable to experience them themselves. We must find the words to describe the condition in a way everyone (not just those who've given birth) can relate to.

Rant over.

MG

[tangerinearmy]

i get where you are coming from.

there are loads of things that i would choose clusters over but the only reason being is that clusters dont last long and you are back to normal pretty quick.

if clusters were to last days weeks or months at a time i doubt very much anyone could stand it.

[alleyoop]

if clusters were to last days weeks or months at a time i doubt very much anyone could stand it.

I stood it for 7 yrs, and others have stood it for much longer.

But I have been episodic for about 8 yrs now, and my remission periods seem to get longer and longer. 

[MoxieGirl]

I think, may be wrong, but I think what tangerinearmy is saying that if the pain from a cluster were 24/7 for days/weeks, it would be unbearable.

So, I once had a headache that lasted 7 months. I was quite literally in pain 24/7 for 7 months. If that were a cluster, no, I wouldn't survive it.

When I have a bad migraine that lasts 4-5 days, in some ways that is as bad or worse than a cluster because it is non-stop for days. Whereas tangerinearmy rightly says, clusters are normally measured in hours.

And I think this is one thing that makes them survivable, and at the same time makes them Hell.

Clusters wear you down after awhile, not just the pain, but the frequency of them, not knowing when the next attack is going to be. Am I going to have a pain free day today, or get struck down 5 times and not be able to do any of the things I have planned?

All of these things combined make clusters a debilitating condition - not just the pain aspect. And is the core of my frustration, yes the pain is worse than 99% of the other stuff out there in the world, but the condition is even worse than that!

On a side note, and a possible digression of the topic:  Have you ever gone to a doctor due to an injury, and in trying to find out how much it hurts they as, 'On a pain scale of 1-10 where 10 is the worst pain you can imagine, how much does it hurt?'  And you look back at him and say, 'Dude, you have no concept of real pain, none at all. Yes, I've just broken my arm and the bone is sticking out, but on my 1-10 pain scale, it's about a 0.5.'

MG

[Bejeeber]

A couple things come to mind that provide some perspective:

First a quote from our forum member Sierra:

"I am a former  Marine that has been shot, stabbed, severely burned, and had several bouts with kidney stones....none of that comes close to the pain caused by a cluster attack."

Second, when I was at the last CB conference a question was asked "how many CH'ers here have given childbirth?"

Lots of women's hands went up.

Then "how many found childbirth to be as painful as CH"?

I saw one hand go up.

[MoxieGirl]

Very well said.

And I like how they are worded because show really good examples.

When I was learning to be a writer, we were taught to always SHOW, never TELL. That is how you get an idea across to people.

So, I could say 'cluster headaches are the worst pain I've ever experienced.' (telling)

Or, I could say, 'I once had a kidney stone and it was so painful I couldn't stand up straight. I had my partner drive me to the hospital, bent over double the whole way crying out in agony. Once there I was giving a shot of demerol, which didn't even touch the pain, so they gave me a second shot. After 48 hours in the hospital the stone finally passed - felt like peeing a glass shard. If I put that on my 1-10 cluster pain scale, it scores a 5. My worst ever cluster headache was a 14.'  (showing)

MG

[tangerinearmy]

if clusters were to last days weeks or months at a time i doubt very much anyone could stand it.

I stood it for 7 yrs, and others have stood it for much longer.

But I have been episodic for about 8 yrs now, and my remission periods seem to get longer and longer. 

you ve totally missed what im saying.

im saying if the pain was constant

[spiny]

Well, my pain history is very long and not actually needed here. One of the differences that I find is that often we get injured and look at the injury and say 'Boy, that is going to hurt like hell soon.'

With CH, we are waiting for the 'hurt like hell' part without being shot or breaking a bone or whatever. It just comes, all by itself, no matter how 'good' we have been, bam out of the blue. Just like we dreaded.

We have dread and not a moments grace to prepare for the pain.

[ClusterHeadSurvivor]

Sorry I disagree Moxie, but we are all entitled to our opinions and I respect yours.

I broke 6 bones in 6 weeks. All 6 combined wouldnt be a kip7.

I tore all the ligaments and tendons in my ankle. now that friggin hurt. That might be a kip 7.5.

I had brain surgery and the pain after felt like a truck ran over me in recovery. that hurt as well. Maybe, a kip 7.75.

I know women who said they would rather have child birth every single day of their life without anesthesia than have 1 attack.

I personally would rather have the most severe migraine for the rest of my days alive than a kip 8 or higher.(I hae chronic migraines and tensions too).

I spoke to a CHr who shot himself. Said it was nothing compared to a CH.

to me....its all about personal experience and journey than we go through. How one deals with the disease, how one perceives it. How one copes. Myself....no other pain I have had in my life from hitting myself accidentally with a hammer to breaks,sprains, cuts and bumps even compares. To me, its the worlds most painful disease. Even my close friend with TM will concur.

Everyones potion of CH is different too. Some are worse and I dont claim to be the worst or had the most.

But the mere fact its even suggested as the worlds most painful disease should raise enough eye brows for eople to think hey this is some serious stuff.

Myself.In my lifetime, No surgery, no cut,tear,break or any other injury or migraine have I ever even considered suicide yet I planned mine for CH.

[tangerinearmy]

well ive lost an eye after having a screwdriver in it

believe me id take cluster headaches over that again.

but the only reason i would take clusters over that is because they end, if the pain was continuous there cant possibly be anything more painful  though.

[MoxieGirl]

I think we are in agreement CHS, there are a lot of really bad painful things out there that can hurt us, but Clusters tend to top them all.

And even though everyone has different pain thresholds, Clusters still come out on top and often by a considerable distance.

I also agree that this is an important message to get across to people who don't have clusters, it's the vagueness of the wording that bothers me, and how it doesn't convey a complete picture of the Hell that comes with clusters.

Try this scenario on for size.

Let's suppose I'm an Astronomer, and I publish a discovery I just made, which is: 'Astronomers have just discovered the largest galaxy known to mankind. In fact, it is 4 times the size of the Andromeda Galaxy.'

Now, as a non-astronomer reading that, I would think they found a pretty big circle of stars. But I have no concept at all how big the biggest galaxy is, or even how big the Andromeda Galaxy is.  So the information doesn't really mean a lot to me. OK, it's the biggest. Cool.

But, if they were to say, 'our galaxy is approx. 120,000 light years across, and Andromeda is 260,000 light years across - and this new galaxy is 4 times that big! It's 1,040,000 light years across!!' - now they are starting to put the size of the galaxy into some perspective. OK, I can't really grasp the distance of a light year, but I know it's a far bit. A quick Google search says it's about 5.9 trillion miles. It doesn't take much brain power for me to work out that I could line 8 Milky Ways up in a row, place them on top of this new fictional galaxy, and they still wouldn't touch the edges. NOW THAT'S BIG!

Relating one person's pain to another person's pain is very difficult to do. We all experience pain differently and there is no level playing field. So trying to convey how painful a cluster attack is, is very difficult. But I don't think putting a vague statement out there is the best way of doing it. Especially when having the condition of cluster headaches involves so much more than just the pain.

Just my 2 cents. Not trying to change the world.

MG

[tangerinearmy]

saying that if the pain from sticking a screwdriver in an eye was never ending

which would i choose

decisions decisions

actually its the the screwdriver

[alleyoop]

Does anyone know where and if this was actually published?

It would be nice to be able to quote it word for word, and back it up with a link or reference.

I know that I had a problem with the wording when I first saw it.  I thought that instead of it reading, "The worst pain known to man", it should read, "The most intense pain known to man."

[CHfather]

Does anyone know where and if this was actually published?

Goadsby: “probably the worst pain that humans experience”

Goadsby, Peter. Interviewed on Health Report. Radio National. Transcript at http://www.abc.net.au/radionational/programs/healthreport/cluster-headaches/3568262#transcript 

Also Goadsby, in a medical journal (with a co-author): "It is an excruciating syndrome and is probably one of the most painful conditions known to mankind."  http://pn.bmj.com/content/1/1/42

Also Goadsby, also with a co-author, also in medical journal: "Few, if any, medical disorders are more painful than cluster headache."  http://www.bmj.com/content/344/bmj.e2407

[alleyoop]

Goadsby: “probably the worst pain that humans experience”

Also Goadsby, in a medical journal (with a co-author): "It is an excruciating syndrome and is probably one of the most painful conditions known to mankind."

Also Goadsby, also with a co-author, also in medical journal: "Few, if any, medical disorders are more painful than cluster headache." 

Thanks for the quotes and the links CHf!

But that word "probably" sticks in my craw.  And "Few, if any, medical disorders are more painful than cluster headache."  is still not the definitive definition that I have heard touted so many times. 

I tried googleing "the most painful condition known to man" and got the Goadsby quotes, along with some links to things like "Ten most painful conditions", "Seven most painful conditions" & "Fourteen most painful conditions", in which all but one put CH at the top.  The one that didn't put shingles as the most painful with CH second. 

No where could I find a credible doctor or researcher that made that absolutely strong statement.

The phrase is bandied about so much that to me, it is concerning.

Bobb

[Ajax]

This is one paragraph from Wikipedia:

Pain[edit]

The pain occurs only on one side of the head (unilateral), around the eye (orbital), particularly above the eye (supraorbital), in the temple (temporal), or in any combination. The pain of CH is remarkably greater than in other headache conditions, including severe migraine. The term "headache" does not adequately convey the severity of the condition; the disease may be the most painful condition known to medical science.[10] The pain is described as burning, stabbing, boring or squeezing and may be located near or behind the eye.[11] Those with cluster headaches may experience suicidal thoughts during an attack as a result of the pain.

I have seen it in other places as well.

[Rimantas]

well I had non stoping attack after unsukcesfull bustin, after 5 hours I passed out my mother called an ambulance. So I think after 24 or a bit more hours of non stoping attack I would be dead... there is no pain which would kill you so fast.

I had my left leg burned realy hard then I was little and I would take that pain over cluster any time, it was 3d degree burn skin was gone on half of leg.

I my opinion if cluster would just a bit more painfull we all be dead... maybe pain is diferent for everione I dont know.

[alleyoop]

Sorry, but I don't put much stock in Wikipedia since anyone can edit it.

[CHfather]

Sorry, but I don't put much stock in Wikipedia since anyone can edit it.

Bob, you might have missed our very concerted effort last year to edit the Wikipedia entry about CH (to try to include some reference to psychedelics).  They're very strict about their medical entries.  In any event, I don't see what's new in that Wikipedia entry.  In fact, the quote from what Ajax posted -- "may be the most painful condition known to medical science" -- is just a rephrasing of Goadsby's quotes from above.

[alleyoop]

Jerry, no, I didn't miss the excellent effort put forth by you and others on Wikipedia about CH.  I need to go there and see for myself the progress made.  But it'll have to wait till later.  I am covered up with too much right now.

And I agree that the quote Ajax pulled from the site is just a rephrasing of what Godsby quoted.  Maybe someone will come up with a definitive quote from a knowledgeable and reliable source.

[Whooligun]

On a side note, and a possible digression of the topic:  Have you ever gone to a doctor due to an injury, and in trying to find out how much it hurts they as, 'On a pain scale of 1-10 where 10 is the worst pain you can imagine, how much does it hurt?'  And you look back at him and say, 'Dude, you have no concept of real pain, none at all. Yes, I've just broken my arm and the bone is sticking out, but on my 1-10 pain scale, it's about a 0.5.'

MG

haha yep

[ThatHurtsMyHead]

On a side note, and a possible digression of the topic:  Have you ever gone to a doctor due to an injury, and in trying to find out how much it hurts they as, 'On a pain scale of 1-10 where 10 is the worst pain you can imagine, how much does it hurt?'  And you look back at him and say, 'Dude, you have no concept of real pain, none at all. Yes, I've just broken my arm and the bone is sticking out, but on my 1-10 pain scale, it's about a 0.5.'

MG

MG,  Quite funny actually.  I had that exact situation happen to me 2 years ago.  The middle and index fingers on my right hand got stuck between a dock  line and cleat.  It was just bad timing that I lashed and pulled to snug the line at the same time the boat pulled against the line while docking.  My 2 fingers were under the line right when it tightened.  I heard a few pops but was looking up and was afraid the dinghy motor housing had bumped up against the dock piling.  I used my left hand to feel the back of the motor, but oddly there wasn't any damage.  At that moment I realized I couldn't move my right hand.  Looked down and saw my fingers pinned and being crushed by the line.  I couldn't pull my hand out so I instinctively used a shoulder lunge to force pulling my hand out.  Hind sight, the popping was my 2 fingers popping, like one would squeeze a grape and it pops.  (only fingers are a LOT louder when crushed to that degree).

Went to the emergency room.  My middle finger bone was sticking out of my finger down to the first knuckle.  The meat was basically peeled off the bone, and both fingernails were peeled off as well.  I could feel some pain, but it really wasn't that bad at all.  Compared to a CH it was maybe a 3 (out of 10).  I figured it might start hurting when they got around to working on it, so I had to 'fake' the pain at a 7 (which the nurse asked me: "are you sure?  Looks like it hurts worse than that.  The bone is sticking out and your fingernails are gone").  ha ha... 

They did a nerve block, but had to do it 3 times because apparently I'm immune to the primary drug they use for nerve blocks (twice with the normal stuff, then a third time with something stronger).  After the 3 nerve blocks it took the pain from a 3 down to a 2.  I figured it was good enough and told them they didn't need to do it again.  The doc finally comes around and tells me it's going to really hurt because he was going to force the finger 'meat' back around the bone.  I look at his face when he's doing it and he's really pushing and twisting, has this sorta distorted look on his face that's sorta scary. ha, ha..  Anyway pain goes to maybe 4 for a minute while he's pushing and twisting trying to get my finger meat back around the bone (through where the fingernail use to be)..

Most everything grew back together ok.  The feeling just started coming back a few months ago.

Yea, pain is all subject to one's experience level. :-/  Just don't drag your fingernails across a chalk board while I'm around...  Not cool... 

J

[Bejeeber]

Now THAT is some serious pain tolerance! Sheesh if you go into the espionage biz and find your fingernails being pulled by enemy agents, I guess you can do the fake pain thing where you're saying "ow! ouch! stop it, you're being mean!", while you're thinking "ho hum, oh well, maybe I can also get a pedicure outa the deal while they're at it". 

[MoxieGirl]

WOW! Yeah, that's impressive.

I do find if the pain level is anything below a KIP 8 I can just mentally walk away from it and pretty much turn it off. I haven't injured myself quite to the same degree and smashing my fingers, but have dealt with some pretty serious levels of pain. Well, serious for mortal folk, not tough leather souls like us.

It the times when you're in the emergency room calmly giving the doctors and nurses directions on what they should be doing to fix you that I think people find unnerving. I once helped a nurse set up an IV because she kept missing the blood vessel.

MG

[ThatHurtsMyHead]

I was about to post some pics, but after looking at them again.  I thought they might be a little gross for some people.

J