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Pain level scale


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I want to keep a journal with all kinds of info about cycles,vitamins and pain level.


In regards to pain level on KIP

The more I think about it , the more difficult it is for me to objectify assess the pain level.Here is why.


When abortive method doesn't work,I end-up,cursing god and everything living and dead on earth and I end-up  running around  the house and doing push-ups in desperation to ease the pain. You know the drill.


While I 'm at its worst , I'm thinking  it's 7-8-9  , because I just want  to be dead at that moment.  

But once the pain is gone for the day ,I'm thinking it was like 5-6 I  just overreacted.

Now when my Cycle is gone, I'm thinking it wasn't really that bad at all.I can't image I was cursing at 2am because of stupid headache.

I also am all alone in my house during the cycles, so there is no witness.


Which reading of level is then true pain level that you are supposed to write down?

Does your perception of pain changes the more time passes by?


Thank you





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...personaly I would record the pain level as perceived at the time...related to previous hits


...there are remarkable stories of clusterheads reporting on pain OTHER than CH...

which to "normal" folks would be excruciating....but to a clusterhead is "meh"...see women

and childbirth...


...which is to say we have an altered impression and a pain tolerance uncomprehended in

the medical profession...one of the few benefits(?) of CH....





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Thanks  jon,


I was wondering, Do you think your pain tolerance is higher due to CH pain?


I don't think my pain tolerance is higher. 

When I hit my toe on a table leg, I would still curse and be in pain as it still hurts like hell . :)


But when I'm in pain other then CH pain I can easily  compere it,to  how strong it is in  relation to CH pain .

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...there is NOTHING...in my experience (broken bones, falls, cuts)... that compares in ANY way to

a bad cluster hit....THAT pain is truly indescribable. Sure other stuff hurts...but if I think about it..

I could tell ya exactly what a broken hip hurts like, or a kidney stone, or or or...NOT ch.....

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I  think my problem is , that I can't image the "pain" ,when I don't have it anymore.

I know my CH hurts when I have it, but I soon as it's gone,  I can't  really remember the pain itself. I just remember the experience. 

I think that I have to write down the pain level while I have it, otherwise it will be always be like 5 or 6 

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John2000, I have to agree with jon019, If you think the CH is 8, it is a Freaking 8! I used to feel the same as you, and downgrade the pain, and myself.

At that time I did not know anyone else with this bitch of a problem, my neuro thought I was nuts (maybe), that I do have a high tolerance for pain(don't think so), simply by the fact that I am still standing after 45 years of this S--t. Over the last 20 plus years of using 100's of Imitrex inj's, and mountains of Verp, I started to forget about the 8's and 9's. Then I had that late warning, that I ignored, now I know I will never forget, an 8 is an 8. I believe we should call CH by their real name,Trigeminal Autonomic Cefilalgia (sp). The word headache just is not powerful enough.

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I believe you should rate pain at the time of occurrence. Mental strength and inner spirt get you get through it and the memory of the pain departs quickly. If it didn't the haunting memories would increase suicide rates even more. If we held on to the memory of actual pain I doubt most women would have more than one child. The cluster survey reinforced how relatively bad the pain is. I recall them reporting gunshot injury and loss of limb were worse and those only happen once not a couple hundred times a year. If you have not taken the survey you are encouraged to do so. It is a very comprehensive instrument and you will gain some insight as you take it. Most important it will provide understanding to funding groupsntomsupport research.

My personal experience with rating and handling the pain parallels mine exactly. The post attack perception is also similar.

I do believe our ability to handle other painful situations is improved because of the CH experience. There's not much one can't handle after dealing with cluster cycles. This includes kidney stones, gout attacks, torn body parts, extreme exercise and extensive tattooing. An increased pain tolerance may not be so good as one may put up with or ignore significant warning pain and end up with permanent joint, heart or renal damage. Delay in treatment because the pain a non cluster person would seek medical care for gets ignored by a CH warrior who knows how to suppress pain better than most. No proof, just personal speculation.

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I have been broken up a lot. I have crushed my acetabulum broke my back, seperated my shoulders one incident, broke collar bones, broke ribs, torn ligaments to name a few. I have passed kidney stones a couple of times. I can tell you that none of those listed come close to the pain of CH!

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We do have a higher pain level in my opinion. Last year I hit myself with an hammer on the knee with full force. Saw some stars and a big egg started to develop on my knee. But just a little bit of pain, it was no problem..


But anyway, if you want to registrate, download my app I'm building for the clusterheadache and Migraine people. I've been posting messages on this board about it. Its a very simple app were you can load buttons with your symptoms, medicine, alternative medicine, activities and more. After installing the buttons you need, you can press them to register that item. 


The registrations are made with label of button, date and time, amount, intensity or duration.

All registerations are displayed on a (for the moment) simple timeline. When I finisch some work I'm doing now on the buttons, I will make a better timeline that gives more view on all individual registerations.


You can download the app for free because its my way to try to help us finding a solution.

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