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

Hoppy.

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."

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


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.

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

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 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