Hi,

You may already know that I'm interested in understanding pain levels that are associated with cluster headaches, and how they compare to other painful events we experience.

To this end, I have created a very short survey that compares cluster headaches to other aches and pains.

My goal is to get an idea of how other 'things' compare to clusters in the general cluster sufferer demographic.

I would be very grateful to have 2 minutes of your time to complete this survey. Honest, it won't take long.

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Thank you,
MG

Hi Moxie,
A full blown CH kip10 would pale your survey insignificant
by comparison including child birth.

Hoppy.

The pain is one thing, but then it's knowing it will return.

Again, and again, and again and again and again.

Hi Moxie,
thought this would interest you.

Professor Peter Goadsby; director of the UCSF Headache Center and one of the world's leading headache experts and researchers has commented:

"Cluster headache is probably the worst pain that humans experience. I know that’s quite a strong remark to make, but if you ask a cluster headache patient if they’ve had a worse experience, they’ll universally say they haven't. Women with cluster headache will tell you that an attack is worse than giving birth. So you can imagine that these people give birth without anesthetic once or twice a day, for six, eight, or ten weeks at a time, and then have a break. It's just awful."

The condition was originally named Horton's Cephalalgia after Dr. B.T Horton. His original paper describes the severity of the headaches as being able to take normal men and force them to attempt or complete suicide. From Horton's 1939 paper on cluster headache:

"Our patients were disabled by the disorder and suffered from bouts of pain from two to twenty times a week. They had found no relief from the usual methods of treatment. Their pain was so severe that several of them had to be constantly watched for fear of suicide. Most of them were willing to submit to any operation which might bring relief."

I will say that when my CH are bad, I walk around with my hands on face not knowing where I am going.  I will stop frequently and drop to my knees and rock on the sidewalk.

I do this because it was the only option.  The pain is so intense that this is all I am capable of, there was no other option.  That seems to be what my mind tells me to do while enduring horrific pain.  I know the pain will pass after my brain pours out of my left nostril, I am most concerned about being hit by a car or stopped by the police.  I am very good at ignoring strangers offers of assistance and can deal with the staring.

I have never even heard of pain worse than CH.  I broke my hand in 3 places and that was a joke by comparison.

Hope it helps.
Bobby :'(

AussieBrian wrote on Aug 15^th, 2013 at 7:38am:

The pain is one thing, but then it's knowing it will return. Again, and again, and again and again and again.

You got it spot on with this comment. What makes it worse is when it is striking at a predictable time for days on end (or longer) and you watch the clock get closer to the time.

I was expecting to see this survery end with "Cluster headaches" and was hoping to have a write in so I could put in 10^10000000000000000

as for it returning, it is awful, but I can almost take some sort of cruel comfort knowing that within a specific time of day I'll have them and I'll have oxygen.

Hi Everyone, and thank you for filling in the survey, it is getting some good response.

Below is a post I put up on our sister board about this very topic of clusters being the 'worst' pain known to man. And I think, in this regard, I have to agree with AussieBrian.

There has also been talk on the other board about the 1-10 pain scale for clusters being like the 1-10 Richter Scale, where 2 is 10 times more powerful than 1, and 3 is 10 times more powerful than 2, etc. And although I agree that this is how it feels, that is a challenging concept to get across to most people.

Back to the survey I've posted. I'm asking for this input because it will play a part in a bigger project I'm working on, which I will publish here when it is done. I'm hoping clusterheads will find it useful.

So, here's the post I put up on the sister board about this topic.


Something I've also been thinking about when comparing other pain to clusters. When I read about clusters, it is usually said that they are the 'worst pain known to man', or the 'worst pain known to medical science'.

Interesting this word 'worst'. Perhaps it is just a way of saying 'most painful', without having the word 'pain' show up twice in a sentence 'most painful pain known to man' - reads a bit weird.

But also, maybe worst includes things beyond just how painful it is.

Compare it with a broken bone. I'm 40 something, and have never had one. (knocks on wood) But I have friends who have, and it hurts! But it is a rare thing, happening possibly a few times in most people's life (not taking into account people like Evil Knievel).

So how does that compare with a cluster attack? If I had one or two cluster attacks in my entire life, it may score more or less the same as a broken bone. If I got 150 broken bones a year, they might score closer to cluster headache.

I think there is an unavoidable fault when trying to compare clusters with another pain on an equal footing. That equal footing doesn't exist. Can't exist. For most comparisons, I hasten to add. Trigeminal Neuralgia might be an exception.

Some of the things I think make a cluster attack 'worse' than other pains is the complete randomness of it. Its resistance to most traditional medicines. How long it last for, for those of you that have it lasting 1-3 hours. The side affects, PTSD, fear, anxiety, lack of sleep, regularity of it (random regularity, if there is such a thing). And also the utter lack of understanding of it amongst the medical community.

For example, one thing that would reduce the 'worst' factor of clusters is if every doctor knew how to diagnose it quickly, and how to best treat it. Even taken psilocybin and LSD out of the equation, if doctors knew to give oxygen and injections to a patient on their first visit, that alone would reduce the 'worst' rating. Because instead of going years without being diagnosed, or wrongly diagnosed, people would have tools at their disposal to deal with the condition.

MG

"For example, one thing that would reduce the 'worst' factor of clusters is if every doctor knew how to diagnose it quickly, and how to best treat it. Even taken psilocybin and LSD out of the equation, if doctors knew to give oxygen and injections to a patient on their first visit, that alone would reduce the 'worst' rating. Because instead of going years without being diagnosed, or wrongly diagnosed, people would have tools at their disposal to deal with the condition."

Moxie... therein lies the problem.. educating doctors .. most don't have a clue what CH even is and our Misdiagnosis runs rampart. Ever since I've been on this site (since 98) that's been one of our goals - educating doctors.

But as of now, WE must be our own advocates and LEARN as much as we can about our disease so we KNOW what we need and how to treat it. Most of us who've had this for a while KNOW what's best for us and finding a doctor who will work with us is our next step.

I'm one of the lucky ones.. After a few years I found a GP and a neuro who have worked with me for a lot of years and "listen" to me. We've found a magic bullet and most of the time it works well, but not all the time.

The pain of CH is not describable to one who hasn't suffered it. We've associated it to giving birth without any drugs.. (and I've done that and it hurts like the devil) several times a day. I thought that was the worse pain I'd ever endured until I got hit with CH... then my mind changed totally. Childbirth was a breeze.

We all hope that someday medical science will find a "cause" for this and then maybe a cure, but until then, those of us who suffer will keep on suffering and trying to find a way NOT to hurt and support each other.

But knowing we're not alone with this malady has saved a lot of lives and this board has been our lifesaver over the years.

I wish you luck with your report and look forward to reading it.  :-*

The pain is horrific but for me at least, a bit of the pain includes fear if that makes any sense.  When my CH are high on the scale.  I am scared as hell.  Even though I know what is happening, still, I am scared every time.

When I re-read this it seems to not make much sense.  However, I believe the fear included in a bad CH such as when will it subside, will it get worse and how much more can I take is all part of the pain rating when I describe them.  For bad ones I tend to panic making everything worse.  As if running down the street will help!

Good luck in your work!

Hi Barbara and Bobby,

I agree, we need to find an effective means to educate doctors, and I have an idea or two about that. But need to make some enquires. I used to work for the National Health Service in England, and may have some contacts that can help.

I also think one of the steps in that process is putting CH into a language that non-clusterheads can relate to, even if it isn't spot-on accurate. We need to get them into the ball-park, as it were.

Bobby - I often compare an attack to a child being regularly abused by their drunk father. The absolute terror they would feel when the father returns home, not knowing if he is drunk, and thus going to smack the child around, or if he's sober and will be approachable. I think CH instils the same level of terror.

MG

Hi MG,

Your analogy is going to get the point across.  For myself the fear is such a big part of the pain.  Now, does that enter into the pain scale or add to it?  I am curious about others.  This cycle was so bad prior to Verapamil that I was afraid of being alone in my own home!

Your project is admirable but I do not envy the amount of work involved.  I had a few at work and I was with two of my closest friends and honestly only one of them really got it.  My wife doesn't really get it.  To others it is simply a headache.  Albeit a bad one, but nonetheless a headache.

Anything I can do to help.
Bobby

Hi Bobby,

I hate the word 'headache' in the title of the condition. So do a lot of people, but I think that is another battle. I now routinely call them cluster attacks. It is much more an attack than a headache, if you ask me.

I just put a new post up called 'Thor's Hammer'. It is one of my descriptions of a general attack.

People tell me I write pretty well, and I have a knack for putting feelings into words and making pictures from them that others can understand. This I think, is the missing link between what we experience and how others understand it.

MG