Anonymous Cluster Pain Survey

[MoxieGirl]

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.

Pain Scale Survey

Thank you,

MG

[ThatHurtsMyHead]

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[MoxieGirl]

Good thought Jeff, but the results are going to be averaged out, so at this point I don't think it needs to be that accurate.

Have received 17 responses so far, and it is interesting how close many of the values are. For example:

Most people rate 'Putting your back out' as a 6 or 7, with a couple of 4's. But there is also a 1 and a 2. So a wide range of experiences, but a clear majority as well.

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.

OK, not the best tools in the world, but tools.

Wow, where did all that come from? Shall get off my soap box now. hehe

MG

[MoxieGirl]

Bump

[weatherman]

Great Survey!  Hope is yields some good results.

I don't believe I've ever experienced a K10 clusterheadache.  K9 had me almost paralyzed, unconscious and scared to death.  That was before being diagnosed.  Would have called 911 if I was able.  To me, K10 is the end.

I've seem my share of burns, cuts and a few broken bones.  Can't say I have had to deal with most of the items on the survey, maybe just lucky ...... but no pain I have ever encountered even comes close to that K9.  Not even sorta close.

You are correct, the randomness, lack of apparent physical injury, rapid onset of pain and the duration ...... make this difficult to compare to other injuries.  To include ALL of these factors, I think only a difficult birth or kidney stones are close.

I've seen both and they looked like I felt during the K9.

Can't wait to see the conclusion ......

weatherman

[MoxieGirl]

The results are looking really interesting. I only have 37 respondents so far, and really want to get that number up closer to 100 if possible.

What I'm finding interesting is that by asking about other pains, I'm seeing that not everyone's clusters are the same.

The question about migraines for example. The vast majority rank them between 4 and 7, right where I would rank mine. But one person scored them as a 1, and a few people as 2s and 3s.

I don't think this means their migraines are really mild, as the pain level of a migraine is pretty well established. But rather, their Cluster-10 is so far out there that migraines pail in comparison.

I think when I get to developing the 1-10 pain scale of clusters, the 8, 9 and 10 are going to be pretty extreme, with only perhaps a percentage of the population ever reaching that level. I think some people's upper limit is what other people would call a 7 or 8.

MG

[ThatHurtsMyHead]

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[MoxieGirl]

Very good points Jeff, well presented (and not offended - from one data analyst to another)